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love + light

“The human spirit is stronger than anything that can happen to it.”
– C.C. Scott

chew on this

Some years ago I had a dream boss, Rachel. She made everything palatable, no matter what it was. She could paint shit pink, call it bubblegum, and you’d blow bubbles until your face hurt.

“Paint it pink and chew” is just that. If dealt a crap hand, turn those lemons into lemonade. Or, as my case may be, drop the lemons like hot potatoes.

I have breast cancer.

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Click on “morsels” or the pencil icon to keep up with my journey.
Click on any post headline (the bold date) to leave a comment or well wishes.

one n one i

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Jeni.

Mother of 3 amazing humans – Madison, Lilja and Ray Ray.
Married to my partner in crime, Bill, for nearly 20 years.

Creative problem solving by day.
Pottery throwing witch on wheels by night.

And, today, breast cancer warrior.

morsels

Thanksgiving 2015. Like any other day, early to rise. Lots to do. Somewhere in the chaos of cooking for masses I find this lump on my breast. Subtle. Sorta raised, sorta round. Not a frozen pea. They said it would feel like a frozen pea. Not so much. More like a soft, fleshy marble. On the right. Near my arm pit. Annoying.

The following are little nuggets of my story with breast cancer. The good, the bald and the ugly truths of my time with the big C. Thanks for following along. Scroll all the way down if you want to start at the beginning.

Click on the post headline (the bold date) to leave a comment or well wishes.

The end is near

Friday I had my deconstruction surgery at Rush. Dr. K and team removed everything on the expander side and all the bumps and knobs left on the already deconstructed side. I ended up staying the night, was nauseous from the sleeping drugs, and couldn’t get the pain quite control quite right. And, to be honest, I didn’t want to get in a car.

I was home by noon on Saturday. Slept most of the day, took a few little walks. Went to bed at 7, and got up this morning at 7. Not a lot of pain today. A deep, crunchy cough from the breathing tube, and still a bit foggy but pain is a 2 and everything feels alright.

I’m allowed to shower today. I’m afraid to look. Have one drain to contend with. 60 cc’s this morning. Probably have it all week.

I hope I’m completely flat under all the padding. I hope I’m done.

Cleared for the last at bat

I had my pre-op tests today, and was cleared for surgery.

This article popped up in my FB feed. I’m dropping it here for my own reference.

Over spring break, my Aunt’s friend walked into their condo, said “I hear you’re going flat,” and lifted her shirt to show me her scars. She never looked back. And though I am truly sad to have lived through all of this and still have more to go, I know flat is where I should end up. It won’t be pretty, but it will be 100% me. And I can live with that.

Batter up.

Long time, no speak

It’s been a long time since I’ve been on here. This is just a quick update, more for my memory than anything. I talked to Oncology today, and we decided I should go off of the Anastrozole. This long term drug is an estrogen suppressant. But it’s causing me pain in my joints and feet, and more recently discomfort in my left arm. We’re going to see how I feel in a month from now, and then potentially try another variant of this Aromatase Inhibitor class of drugs.

Second, and much more importantly, my last surgery is on the horizon. On Friday, September 8th I’m going to have my reconstruction explanted, and go completely flat. I was left with some bumps and knobs after the emergency removal of my right expander, and I’ve decided not to pursue further reconstruction, but quite the contrary – deconstruct it all and live a flat and fabulous life.

And with that, let’s hope, it’s the very last time I need any medical attention of a serious nature.

Hope the summer treated you well. See you on the other side.

Another trip around the sun

Greetings.

It’s been a while.

Because I’m okay.

Today I turn 45. When my mom turned 45 I made her a huge sign – You are 9 times Adrianna and 5 times Caleb. She was so young. I realize, now, she probably didn’t feel so young. What a long, strange trip this has been.

I finished PT and OT. No lymphedema. I’m able to move my arm around, not without discomfort, but I can do it. My skin on my right side is tight, and in places very hard. I have weird mounds of skin in the front and on the side. It’s still very tender on my rib cage, probably due to radiation. And still very red.

No issues with menopause, post oopherectomy. The new drug I’m on (for the next 10 years) makes my joints ache. It’s managable. Anastrozole. It blocks estrogen production from the adrenal gland (since I no longer have ovaries).

Next month I will be 1 year cancer-free. May 26th is the anniversary of my double mastectomy. I will be visiting with all of my doctors for my one year check in next month, as well – surgeon, plastics, gynecology, oncology and radiation. I’ve decided not pursue further reconstruction, but instead deconstruction. When I see the doctors, I’m going to explore taking the last breast mound out and flattening out my right side. Flat & Fabulous it’s called. I’ve joined a support group with others who have also made this decision, to see how they are handling the transformation. For me, what I have now isn’t right. I don’t like the expander’s reaction to my muscle – I can squeeze and contort the saline bag inside by flexing my pectoral muscle. Though I make an excellent candidate for Late Night TV’s stupid human tricks, it all just feels foreign. Reconstruction from this point is super intensive. Moving skin from someplace else to “create” a breast mound. It all sounds horribly painful. And, let’s be frank, I’ve had enough of “what could go wrong.”

So, there you have it. Sometime in the fall, I’ll have one last “big” surgery. And then, let’s hope, by this time in 2018 I’m planning my trips around the world – Bali – Krumlov – Amafi Coast.

Much love from the birthday girl to you all. Love the ones your with.

Long, dry spell

It’s been a while since I’ve documented my journey. Always hoping it will come to an end. Today, however, I’m sitting in the waiting room of the radiology department at Rush, awaiting an ultrasound. I’m losing feeling in my right hand. Like a numbness. Sleepiness. Dullness. I’ve had an Xray of my neck. Next is ultrasound of my arm. Try to see if there’s a blockage.

We’re ruling out a blood clot. Oncology doesn’t think it’s drug related. Could be surgery related. Might be from PT. Could be pinched nerve. Might be blood clot. For all that’s happened to me on my right side, it seriously could be anything. All concerned agree this is the best next step.

Will have results tomorrow.

Treatment ended last week. Was bittersweet. My super-dooper-amazing-human nurse Christie showered me with gifts and treats. Bill came down for the day and we had a lovely champagne lunch with lobster rolls and then spent the afternoon taking a very much needed rest.

I have many adventures planned. I spent a long weekend with my brother and his family in California. My sister came too. A few days from now I’ll be in Arizona with my college roommates, celebrating in the sunshine. In March I’m off to see my Dad on the Texas coast. Plus a fantastic local celebration with pink drinks and lots of dancing. Potentially Harry Potter land in May. We’ll see. Bill will probably kill me with all my disappearing acts.

Hoping there’s a reason behind this strange sensation.

Delayed, by insurance

Tomorrow would have been my second to last infusion. I had a celebration of epic proportions planned for the 26th. My final one. It’s all for not. Not happening tomorrow. Therefore, not happening on the 26th.

Due to the incompetence of the health care industry to get their shit aligned, I’ll have to postpone my life-saving-treatment while they can figure out how to file paperwork.

The system is so inefficient it’s terrifying.

I will go to my grave saying Obamacare saved my life this last year. The hospital guided me as to what to choose, and how it would work. I picked the only insurance plan they’d accept. My treatment, from an insurance perspective, was flawless. Then, as 2017 approached, the bottom dropped out and I’m back to square one. My insurance carrier dropped my hospital and all of my options. I do, fortunately, once again, have insurance that Rush accepts, but the new, monster, insurance company can’t keep up with demand and I’ll have to wait to get mytreatment.

I won’t die from not having the infusion tomorrow. But I will miss my sweet celebration of completion. I guess there will just be more opportunities to celebrate.

I realize the system is flawed. But it saved my life. I didn’t bankrupt my family. It allowed me to choose the doctors I wanted for my disease. For my treatment. Who saved my life. It worked really well, for me. What’s going to happen now that this fuck nut is in charge of my health? I no longer have ovaries or breasts. In his book I’m probably not female, anymore.

The eve of the eve of the year of Jeni

Sorry for the long pause. I’m seeing the end of the journey now, and I feel like I’m repeating myself, even here, constantly. There is news. Always something new.

A few weeks back I had my ovaries removed. So far I’ve not had any side effects. I’m on a new drug – one that stops estrogen production from the adrenal glands – since I no longer can produce it from my ovaries. It was a precautionary surgery – simple outpatient procedure – I wasn’t sure I wanted, but now that I’m on the other side of it, I’m feeling really grateful I did it. I’ll be on this new drug for 10+ years – as long as the cancer stays away from me.

I started physical therapy. I can’t move my right arm over my head without a lot of pain. It’s difficult to sleep on my right side or stomach (my preferred positions), and it was time to address the issues I’m facing before they become permanent. Luckily I can go to the hospital closest to home, and it has been very helpful, informative and appears to be helping.

Unfortunately, one arm is bigger than the other. I started seeing an occupational therapist as well. I have no baseline from before my multiple surgeries happened, so as a precaution I’ve started to wear a compression sleeve and gauntlet to squeeze the excess fluid out of me, and hopefully prevent any fluids from staying too long. They removed 18 lymphnodes from my right side armpit, and thus the issues. I’m a candidate for lymphedema, something I have no interest in dealing with. The sleeve is comfortable, not to obvious and, for now, a necessary evil.

I was also fitted for a proper breast prosthesis and bra contraption. I’m only a few days into it, but I like it. The extra weight on the right feels more balanced. I feel dressed for the first time in months. The shop suggested I wear it 8 hours a day, will help my neck and back feel better, and I should use it during the physical therapy sessions as well. Opens up the other half of my wardrobe, which is also nice.

We were able to secure new insurance, starting Jan. 1. Bill’s company was kind enough to change their plan offerings, to allow the kids and I to join in and allow me to stay at Rush. It’s a huge relief. Healthcare has been such a learning curve and obstacle. Though Obamacare saved my life.

I’ve continued to pursue meditation to help ease my anxiety. It’s helping. Feels good to be in a group / community of people seeking similar relief. Susan joined me last night at a new place, with both decided we’d go again, and hopefully next week we’ll try it again.

I’m going back to pottery classes. As I see the end of the treatment schedule approaching, I’m filling my free time with things I loved doing before cancer took over my life’s plans. I miss my instructor, Jean, and my wheel mates. Looking forward to the therapeutic Thursdays on the wheel starting mid month.

I’ve planned some trips too. My goal is to travel once a month this next year. I’m going to see my brother Chris and his crew, with my sister Butzer, to celebrate the end of treatment in late January. In February I’m going to ring in the new year with my college roommates in Arizona at some fabulous spa in Scottsdale. And in March I’m going to sneak down to Corpus Christi to see my dad in his winter nesting spot. That’s as far ahead as I can plan. I’ll start wave 2 in February.

And because there’s not enough to do around here, we added a puppy to our lives. She’s full of energy, beautifully silky white, part Lab / part german shepard, and everyone is completely in love with her – accidents and all. Elle Vis (pronounced Elvis) is a fostered rescue pup from Mississippi and is already changing our lives for the better.

Two more infusions left – Jan. 5 and Jan. 26 – and then I can let my cancer journey rest until May. No doctor’s meetings or appointments until May. I’ll continue physical therapy until the pain goes away. Reconstruction – or deconstruction – of my breast mounds will wait until next fall, after my still-scarlet skin has had time to heal and recover a bit more. Surely the fall will come soon enough.

Happy New Year has never sounded so true. A NEW year. I’m a year through it. One whole year behind me. And that’s where it’s going to stay. Here’s to the next year, next chapter, next adventure. I’ve been so fortunate in my journey – excellent care, amazing friends and family, and a positive prognosis – the year of Jeni will be a grateful celebration of all that’s still to come. Cheers!

PT is good to me

Recovering very well from the ovary removal. Started with a flood of bleeding, probably my last period EVER, but it’s slowly going away. The surgery itself feels a bit like cramps. A little bit of stomach pain, nothing horrible. I have a follow up with GYN/ONC surgeon next week.

They said “Immediate menopause.” Nothing yet. No raging bitch or streaming tears. No firey hot nights or days. I’m sure it’s coming. But nothing to report, yet.

Physical therapy started yesterday. It felt so good. She pushed and pulled my arm around, looking for it’s resistance points. Took measurements. Massaged a little. I felt great walking out of there. I have PT twice a week for 4 weeks. Should see some improvement by the end. Looking for full range of motion in my right arm and little or no pain in my neck. My skin all around my right chest is so tight from being sewn and resewn together. There is a lot of scar tissue. I babied the whole side for so long I’m a little lopsided now. The PT says I’m resilient and will respond well to therapy. Bring it.

Tomorrow is infusion day. It’s also 6 months post-surgery follow up with Dr.M’s office, from the primary breast removal. 6 months. Seems like 6 years ago. I was also supposed to have a bone density scan done, but it’s been postponed until my next infusion. The machine is broken, apparently.

Now that I’m officially post-menopausal I will be given a new drug to suppress estrogen, tomorrow. I was originally given Tamoxifin. But that made me a little nuts-o. This new drug is for the post-menopausal crowd. So we’ll see how I adjust to that. So far, my body hasn’t caught on that there aren’t any little estrogen factories in my body any more, hopefully this drug doesn’t highlight that fact.

Seems I’m always an experiment, doesn’t it? Feels that way too. But now, I can see the path to healing in front of me, for the first time ever, I can actually see the end of it all.

Bye Bye Ovaries

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We are home. Surgery took 28 minutes.

I have 3 incisions. One on each side of my belly button and one in my bellybutton.

I can feel my bellybutton constantly, right now, it’s very unusual.

I’m bleeding a little, they said that’s normal. I should expect to feel good in a few days.

They sent the little buggers to pathology just to be certain there’s nothing strange.

Adios, dynamic duo. You’ve served me well. I hope your departure doesn’t turn me into a raging lunatic.

Bring on the hot flashes!

Oophorectomy, Physical Therapy, Lymphedema, Oh my

Tomorrow’s the big oophorectomy – ovary removal. Probably takes longer to get to Rush than take them out, actually. It’s outpatient. Instant menopause. Bracing for that.

Saw Dr. K’s team today. Next meeting is not until MAY! Progress! He’s recommended physical therapy to get better range of motion in my right arm. I have stiffness in my neck and some difficulty sleeping on my right side, this should help. And added some massage techniques so that I can keep the skin and scar tissue loose. Plan to have reconstruction next fall after we evaluate skin in May.

The place I called to start therapy has a lymphedema specialist. So, I asked for a script for that too. Apparently the swelling can come on at anytime. I start next week, as long as all goes well tomorrow.

All in all, doing really well. Healing. Getting used to my new skin. Have my final Mindfullness seminar class tonight at Wellness House. Sad that its ending. Glad I signed up. Will aid greatly in the recovery from tomorrow’s surgery.

Chicken cutlet

We’ve applied for new insurance through Bill’s company. Submitted it today. If accepted, we will be saving money, ultimately as a family, and my treatment should cost us a whole lot less next year. Thousands less, actually. Obamacare served me well, and though it just attempted to screw me, we’ve dodged a huge bullet, thanks to the kind folks Bill works with. I’ll be staying at Rush. Finishing out treatment. Finishing reconstruction. Keeping all of my doctors. Relief.

Sadly, I’ve lost so much sleep over this situation, it’s unhealthy. But I’m hopeful we’ll be accepted without issue, and back on to the healing process.

My next hurdle is ovaries. Being removed Dec. 9th. Out patient. Immediate menopause. Fun Christmas!

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I am healing nicely from my last surgery to heal the open wound in the stitches. I have very little skin/tissue left and it’s tight. I started exercises to increase my mobility, and that’s helping. I have a funny looking hole now, where the original tumor was and the surgery caused a cone like point towards the front of my body, that looks like a little mini boob. It’s not my favorite. I can live with it. I got a prosthetic to help hide it. It works. Super awkward to wear, but again, I’ll get used to it. They gave me a prescription for new bras that hold such a thing, but I haven’t had the energy to focus on that yet.

Looking for a golden retriever / mix for the kids, if you know of any… We are loving the Ginger Dog who visits us often, and it’s time to have a permanent family member, for mom’s mental health.

The 365th day

One year ago, tomorrow, I found that lump that has forever changed our worlds.

I have learned more new words that I never wanted to know.

I have showed more strangers my body parts than I ever thought possible.

I have cried more thankful tears than I knew I had in me.

I have heard from hundreds of friends and strangers with words of love and encouragement.

I have found the way to let go of what I cannot control and lean in to what I can.

I have surrounded myself with completely amazing human beings.

I have asked for help.

I have finally started to heal.

And tonight my sister and I will make our family’s special Parker House rolls, drink Brandy Old Fashioneds, send Bill to the store for forgotten ingredients and beat the kids at yahtzee and pounce. Pa Pa Pa brought the bird and intends to win a world record for the amount of gravy he can create and consume. We will remember our last Thanksgiving with my mom, 10 years ago, and how funny it was to have my brothers attempt the rolls. And I will be missing my cousins, because I always think of going to Aunt Nancy’s on this holiday. And crafting. And football. And now, unfortunately, I will also think of that moment, in the shower, a year ago, when I felt that lump. But also be grateful that I told someone, and someone else, and then someone else and that all together we learned the right words, showed enough people, and found the right path to begin to heal.

Happy Thanksgiving.

No more drains

img_9366I’m only 9 days out of surgery, but the fluid build up was not enough to keep the last drain in. Had it removed today. The lovely Miss Blair went along to hold my hand. The fabulous Miss Jenn was there Monday to do the same. Neither fainted.

I’m trying my damnedest to stay still. Be chill. Sit and rest. Not my greatest strength. I had to cancel my trip to Jamaica, at the encouragement of my doc. Was supposed to leave Sunday, return the following Saturday. But, with healing wounds, no sea water or chlorine for me – much less sand or sun for my radiated skin, what was the point, really? A little time away with some of my most favorite friends would have been nice. But I know we’ll get together again, and have much more to celebrate when my doctor’s visits are far behind and only future travel awaits. Plus, my sister has promised me a trip to Bali. So the decision became a little less painful.

We did have a nice gathering for Halloween, as is tradition. And I barely lifted a finger. Many thanks to all who cleaned up the non-sense. It was really nice to have us all together for a little bit.

I’m coveting my right side, the surgery side, it’s tender. Once in a while there is a little pain in my back. Dr. K (Plastics) thinks it looks good. There’s a thin purple line all along my incision – now covered with glue – it’s on there for good. Kinda my own little tattoo of sorts. He said they’d peel that off eventually, but not for a few weeks. I’m just in a cotton cami, no bandages or pressure. I’m comfortable.

I don’t have to go back for 2 weeks, unless something funky happens with pooling fluid, or a fever. It’ll be the longest stretch I haven’t seen Nurse Shelia or Dr. K in two months. I’m off antibiotics as of today, but am still taking the pain meds to sleep at night. Nurse Shelia joked she’d be hearing from me 15 minutes after I walked out the door. She’s probably right. I get a little overworked sometimes with questions. They’re good to me.

Tomorrow is infusion day at Rush and I have an echocardiogram to check for valve damage to my heart. I moved my oopherectomy to Dec. 9th. May move it further back, per Dr. Plastic’s advice, wanting me to really, really heal this time. We no longer have to combine surgeries, since I had this last procedure done, hopefully I won’t need more on the plastics side until we make a decision on rebuilding or removing the other expander. There’s a lot of time for that.

I have to find new insurance. Rush won’t accept my Obamacare coverage next year. I’ve got to find something they will. Not a lot of options for the self employed. It’s pretty nerve wrecking. Bill and I are trying to figure out who knows more than we do about how we can make something work. Changing doctors now, for me, would be devastating.

Loving watching the leaves change. Some nice warm fall days have been a treat, too. Thank you to so many friends and neighbors for helping us cart the kids around. Another 3 weeks of no driving is really taxing on commuting everyone, everywhere.

It’s Bill’s birthday tomorrow. If you see him send him a shout out. We’ll spoil him some at home too, but he loves to hear from folks on “The Day of Bill.” There’s clearly too much focus on me.

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Healing

Home and resting. Really resting. No lifting, housework or exercise. Just resting. Reading. Unburying my emails.

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Here’s how I came home from the hospital. There’s really nothing left on the right side now. The incision goes around almost to the start of my back. Small thin line. My muscles, or maybe it’s my skin, twinge a little, now and again, but it’s bearable. I have no bandages. Just wearing a cotton tshirt with nothing else. I still have the 2 drains dangling off my side. I’m weening off the narcotics, moving to Tylenol, as needed. Using the Valium. Still on antibiotics and a probiotic. Pooped finally today, which seems trivial, but holy cow what a relief. Sleeping really, really well.

Our dearest friend Noelle has just had her own double mastectomy. (Stage 1. Prognosis is excellent). She’s home for a month recovering, too. We spent the day together with our drugs and our drains, letting her mom pamper us. It was special. Rare. Sort of unbelievable, really. Her mom is a survivor, almost 10 years. So many survivors. We look horrible, here, but we’re cured. And the cure isn’t always pretty, for which I am living proof. What’s really important is healing. And that’s where we are now. Healing. Together.

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I’ve been guest blogger for my long time friend Drew’s company, this last month. My latest entry is about the mindfulness course I’m taking at the Wellness House. It’s been a great help to me in this journey, even in the short time I’ve been practicing. Even if you stink at sitting still, check out the links below – at the end of the post – sometime when you feel you need a little balance in whatever you are facing. It’s really a nice treat.

http://www.medixteam.com/clients/mindfully-healing/

/diˈbrēdmənt/

The new word of the week.

de·bride·ment
diˈbrēdmənt/
nounMedicine
noun: debridement; plural noun: debridements
The removal of damaged tissue or foreign objects from a wound.

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Last week Thursday when I saw Plastics, we collectively determined that the lack of change in the hole’s healing process was disconcerting and the time had come to force this gap closed. We agreed that sooner was better, and to not wait to combine the ovary removal.

Yesterday afternoon, Monday, I had surgery at Rush. Dr. K removed all scar tissue associated with the original mastectomy, cleaned out the cavity, removed as much radiation damaged skin as possible and forced my arm through exercises to break up some of the constricted muscles and give me better range of motion. He used the skin in my arm pit to cover the area, and sutured it flat to my muscle, so there would be no room for fluid to gather. There are no more holes. I have 2 drains to allow fluid out. Will probably have them for 2-3 weeks.

Today, Tuesday, I woke up in a world of pain. Scale of 1 to 10 I was a solid 8 for hours. Morphine made no dent. Norco did nothing. They gave me an IV of Toradol, an anti inflammatory that worked immediately. You can only get one dose, though, as it causes bleeding issues. So, next up will be a rotation of Norco 10 and Valium to keep the aches and pains at bay. Plus IV antibiotics.

I can go home tomorrow, Wednesday. I’m not to do anything for two weeks. No driving, no walking the dog, no laundry, no dishes, no lifting of any kind. I’m to sit and heal, sleep and heal, repeat. I’m sealed up so well now that there’s even glue to keep the skin together. Only stitches on the inside, a thin strip of glue on the outside.

This has to work. I have to be a model patient, and be patient with it. There’s no more skin to use to close up a hole. Dr. K would have to graph skin from somewhere else. That could compromise my options of building a flap breast later on. It really has to work so options aren’t taken away from me.

I’m exhausted but I’m in good hands.

Stable

The oncologist took me off Tamoxifen. Feeling more like myself. Better control in all areas. Probably not a long term solution, but its working, for now.

My partner-in-treatment told me it took her 3 months to adjust. I won’t need that long. Once they take my ovaries out, I don’t need that drug anymore.

Tomorrow I see plastics. The serum color has changed from chicken broth to a milky yellow. No progress on the hole in my stitches closing.

emotional

I can’t stop crying.

It started last night at the Mindfulness class.
This morning when writing next week’s guest blog post for my friend ‘drew.
And then later when I went to show the radiologist what has happened to me.
She kept looking at me, saying “Are you sure you’re okay?”

Maybe it’s the same theory as the serum? Let it out?

I texted my oncologist just to double check this new drug they put me on, see if emotional instability is one of the side effects.

I also offered up that I may be slowly going crazy and have just met my emotional limits.

Nothings new. Nothings changed. I’m sobbing.

WTF, Cancer. WTF.

Patience

Yesterday was an all day doctor affair.

I met the Gynecologist who will remove my ovaries. There are 3 choices for me: leave them alone and await natural menopause, have them taken out or get a shot once a month for the inevitable future. The surgery is 45 minutes long, she’ll go in through my bellybutton and one incision on each hip (roughly). The cons of doing the surgery are that I have to be put to sleep (and the surgery is minor), I will be forced through menopause and I cannot have hormone replacement of any kind. Hot flashes, mood swings and vaginal dryness, were a few of the side effects I have to look forward to. The surgery will be after Thanksgiving.

Here’s an article about the theory behind removing the ovaries. It’s an aggressive option, but has proven successful (less likely cancer recurrence) for others with estrogen positive breast cancer. It also links to the study that my oncologist told me about, one of the reasons I’m pursuing this treatment option.

http://www.breastcancer.org/treatment/hormonal/ovary_removal

The drug they’ve put me on, Tamoxifin, also simulates menopause. It’s giving me hot flashes, cramps and some issues sleeping. Once my ovaries are out, they will change my drug to something else, something for post-menopausal woman.

I had infusion which was uneventful.

I saw my primary surgeon, Dr. M, for a peek at my incisions. I hadn’t seen her in person since late May, though we talk frequently via text message. She stuck a Qtip wand into the open wound, which released a decent amount of serum. She would pack the wound with gauze to help the healing process, but recommended I talk to my plastics team before doing anything. She thinks the healing process is 3+ months long. I’ve got a hole the size of a golf ball in me, right where my lymph nodes were removed. The skin all around that area is thin and damaged from radiation, she predicts the healing process to be very, very slow.

On my way back home I stopped at the plastic surgeon’s office for a wound check. He wasn’t happy about the whole Qtip incident, and would prefer the hole to continue to drain uninhibited. He, too, thinks the healing process will be a very long one. He suggested that we wait another 6 weeks, and see what happens. If I can’t heal on my own, perhaps we go back at the scar, with surgery, and create a new seam, using some of the skin from my armpit. I told him about my meeting with the gynecologist, who had mentioned combining any other surgeries together with the ovaries, since her procedure is so quick, and requires anesthesia. He was all over that idea and we agreed that would be the best way forward. Next week Nurse Shelia will help me coordinate that.

6 more weeks of wearing maxipads in my bra and emptying the hole. I can manage that. There’s an end in sight.

I did get accepted into the Mindfulness course at Wellness House. Starts tonight. Looking forward to finding some mental balance in all of this.

Let it out

The plastics team saw me Wednesday instead of Thursday. On Tuesday, just before getting in the shower, as I was peeling the bandage from the open wound, I sprouted a stream of serum. Same clear, chicken broth colored fluid as before, but it was flowing out of me like a spring. I soiled a towel. I still managed to get in the shower, a little shaky, but washed the serum off my stomach, cleaned the site and got out as quickly as possible.

I texted Nurse Shelia to let her know what I was dealing with and she made space for me the Wednesday schedule. When I showed up, both she and the doctor saw me, and agreed it’s all better out then in. The fluid I’m producing has to come out before I can heal, and this opening in the stitches is helping facilitate that. They asked that I continue to keep it clean and dry and start to massage the wound area toward the opening in the stitches to get the fluid to come out. The hope is that if I can get the fluid out, the skin can fuse and stop producing pockets of fluid.

Ironically, or not, the position I sit in on my “workspace” on the couch is ideal for extracting fluid. I’m a little hunched, a little slouched, a little compacted, and have an excellent light. So today I spent a good 20 minutes soaking through my pads. And by pads, I mean pads. As in MAXI PADS. Which are the ideal for absorbing fluid and I’ve run out of the surgical pads from the hospital. Very MacGyver.

I had a great week, regardless. I was a guest blogger for my good friend’s company’s breast cancer initiative. I celebrated my amazing friend Carmen’s humanitarian award – she’s a judge in Chicago who gives more of herself then there are hours in the day. I made a new friend, Maria, who’s mother passed away from breast cancer nearly 30 years ago. Together we are going to try to bring healing / coping / options to youth who suffer loss or distress from a parent who has cancer. And tonight I applied for a course in Mindfulness healing. At the suggestion of my confidant Liz, worried for my well being after countless setbacks, I investigated integrative medicine. I found a course at the Wellness House, Thursdays for 8 weeks, but I have to be accepted to attend. I’ll find out tomorrow. Mindfullness Stress Reduction is a course using meditation to help reduce anxiety and depression, be present and manage stress. I hope I get in. Priority is given to people in treatment, so there’s hope.

Plus, tomorrow I will to see my sister, spend the weekend with my dad in the northwoods and play with my cousins.

Here’s to the holes healing, skin fusing, fluid drying, finding calm in the moment and always having something to look forward to.

Back on ‘biotics

I met with my plastic surgeon and his nurse today. The overarching theory is that the skin is so damaged from radiation, and so saturated with fluid that the recovery / healing is really difficult. There appears to be slight gap in the stitches where the wound isn’t healed. It’s maybe a half inch wide. They ended up taking out only half of the stitches. They left the ones where the wound is seeping, around where the opening is. When they pulled the stitches out 3 of the holes sprung leaks of serum, too. It looks clear, and not infected, but they recommended I take antibiotics for a week as a precaution. I’ll be back to see them both in a week, or Monday if something happens over the weekend that seems questionable.

This healing process is getting old. Really, fucking, old.

Seeping

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This morning I realized my stitches are weeping serum. Since coming home from the hospital, I’ve had a surgical pad covering the incision site. I took a photo of the incision area / stitches and sent it off to Nurse Sheila. It’s been 2 weeks and one day from the day they took out the right expander. I was scheduled to have the stitches out on Thursday. This development may change that plan. It appears the incision is still open.

It’s the only time the incision has had any discharge. It doesn’t hurt. Makes me a bit sick to my stomach to look at. Will have more news tomorrow. The plastics team wants to see me sooner, they changed my appointment to tomorrow at 1pm.

Adapting to change

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I finally had infusion today. I had to be “front loaded” again, as I’d missed Herceptin for more than a week. Today’s infusion became 1.5 hours of Herceptin and just half hour of Perjeta. I am super psyched my sister came for the weekend and was able to stay with me through today to get me to and from treatment. We met with the oncologist and she’s prescribed Tamoxifin as a long term hormone inhibitor, until I have my ovaries out. Once I become post-menopausal they will give me a different drug better suited for that stage, for the next 10 years of my life. Christy, my oncology nurse was able to rearrange my infusion schedule to get me back on Thursdays, realign my Gyn/Oncology meeting for an infusion day and get me back on track.

Afterward I caught up with Sheila, my plastics nurse, to have my drain taken out from the surgery site. Actually made me a bit queezy. They had about 5 inches of tubing along the base of my former implant, it took my breath away when she pulled it out. I got a chance to see what an implant looks like/feels like. And also see what the expander looks like. I still have an expander in me on the left side. This is what they took out on the right, from the infection that happened after radiation. The metal circle is where they did the filling – it’s what that little magnet goes searching for. The expander has a weird texture on it, and feels very, very thick. It’s hard to believe they thought it could be compromised. Seems industrial to me.

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My incision site is still very sore. I’ll have the stitches out late next week. I’ve gotten approval to stop with the ace bandage around my body, and find a tight / compression bra to replace it. The scar will be a bit lumpy and bumpy, but appears to be healing fine. I’m to just keep it clean and dry and come back late next week to have the stitches out – unless I begin to fill again – which is cause for immediate ER trip. I’m getting used to the missing space on my front a little more each day. The bandage helps. I think it’ll be strange when there’s no more wrapper on me.

Special shout out to my sister for hanging around for the long day at Rush, and driving the kids and I all over this weekend, as I still don’t have my approval to drive. We managed to get to the apple orchard, which was crowded, but fun.

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And the Mizwicki’s sent this lovely bouquet of treats for us – hit the spot – and so beautiful. I managed to cut them up individually so I could try more then one. Looks a bit like an autopsy now.

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The silver lining

Gaylord Focker and I met with the plastics team today, to see behind the bandages and get the low-down on the next steps. Dr. K sent everything to pathology – all came back clean – including the expander. He likened my situation to a giant blister. My skin was so irritated by the radiation and so reactive with fluid, that the expander was floating in serum. Clean serum, but serum none-the-less. He feels confident we made the right decision to remove the expander and allow my chest to heal. I’m producing about 30 cc of fluid a day – a small shot glass full – and we’ll likely have the drain taken out next week.

What now?

Essentially I am in a waiting game. I will have drains and stitches for up to 2 weeks. There are 3 layers of stitches. Inside layers will dissolve on their own. It will take 6 weeks for the site to heal. Where I once had an expander, I am now concave, and my chest disappears into my arm pit. No right boob, for now. I will be able to have a prosthetic to put in a bra, at least for the interim, so I look balanced. My pain level now is consistently a 6/7. Sadly, when this was “just” an infection, I had NO pain at all, just tightness. As Liz said, it’s hard to see the silver lining.

Long term plan is to build a breast mound from skin and muscle from another area of my body, my back most likely. They’ll migrate that tissue under my skin and make a smiley / semi circle shaped addition to my chest wall to be able to put an expander back in. Then my two sides will match again, and we can restart the “fill” process if my skin is forgiving enough. That’s about 6 months out. The ultimate goal being dropping actual implants into these breast mounds when the time and space is right. Also, depends on how I heal and how the rest of my actual cancer treatment goes. I still need to finish infusion, suffer through having my ovaries taken out and start taking Tamoxifin, which I’ll be on for basically ever.

How am I?

Weepy. Tired. Disappointed. Drugged. I wanted immediate reconstruction to help with the emotional impact of all of this. I thought walking out of the hospital with a bit of cleavage would help my mindset. And it did. Though I know this is only temporary, and I’m far better off without all that fluid in me/on me/around me, I am saddened by this set back. When you start treatment, you are really looking forward to crossing milestones. When calendar dates shift by 6 months or more its disheartening to say the least. I do have lots to look forward to this fall and next spring. Lots of trips with my cousins, sister, best friend and Ocho. Lots to celebrate. Lots left to conquer. And this, too, shall pass.

Many thanks to all who have signed up to bring us food and help shuffle the kids around. We are very fortunate to live in such a generous community, surrounded by so many kind souls. I am never alone in this. That’s the silver lining.

Home, again

I got home yesterday around noon. Spent most of the day sleeping. Regrouped with my people. Susan brought dinner (Thank you!!) and I went back to bed. The hospital is no place for rest. Woke this morning rested but still groggy. Very sore. I have a drain in the incision site on my right side, and am bound up with tight bandages. Not a lot of drainage – 20 cc yesterday – 10 cc this morning. Nurse Bill handling his duties with precision and care, and a few choice f-bombs to keep it real.

Tomorrow we will check in with Dr. K. and get a peek at what they did to fix all the issues. It’ll be too soon to talk about what happens next. Only healing is in the immediate need category.

I dropped a line to my radiologist, who is still on vacation. So much has happened since I saw her last, I figured she’d like to know. Since I’m all bound up until further notice, I can’t see her until plastics gives me the thumbs up. I gave her team access to my Rush records so they can catch up.

No driving or lifting anything for two weeks. Miss Jeanne put the meal train in motion – thank you – so we’re in good hands for a few weeks. A little bump in the road. Technically it’s a little bump no longer in the road. Perhaps there’s a prosthetic in my future. We shall see.

Here’s to better days ahead.

Rejected

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I came in this morning for infusion. On my way in I chatted with my primary surgeon, to see if she could see me while I was at Rush. She asked how I was, since Saturday. I told her I’m basically the same. Still swollen. Less red, a bit hot. She said they must see me before infusion to check the site. One of the drugs I get can cause my white blood cell count to plummet, and since I’m fighting off an infection, it could make me septic.

She sent me to her office, at 7:15, to meet her nurse. Then she sent my plastic surgeon, and his Fellow. And in a matter of 10 minutes it was suggested that the radiation damage was so extensive that my implant needs to come out. We could do it today, wait a week, or wait a month for this thing to turn around, but in that process I was at risk for all sorts of other issues, and it was already beginning to fill with fluid again.

Both Dr. K and his side kick agreed they could get me in today. So with a heavy heart, I agreed. Dr. M, my primary surgeon, called me on my way to admissions, tears streaming down my face, and reassured me there would be other ways to build a boob. The implant will not be an option for this space moving forward. My skin is tough and thick from radiation. The open wounded skin will need to be removed and the remaining pulled together tightly to heal. To heal. To finally heal.

The surgery went quickly. Michelle saw me in. Bill saw me out. There were a few more tears before, during and after. Not so much out of sadness, but more out of exhaustion. I’ve been more in the hospital then out this last week. I haven’t slept a lot. And my journey’s far from over. Bill brought up some soup for snack, then ran home to gather everybody up from Martha’s and Carmen’s (Thank you Miss Marfa!! Thank you Miss Carm!!!) and Shelly came with sushi a little later and helped me walk the floor and get the feeling back in my legs.

Tomorrow the Fellow, Dr. B, will greet me early in the morning, show me what he did with what he had to work with, and let me know if I can go home. Tomorrow is a new day. And at some point this week I’ve got to get this elusive infusion my body is working so hard to not let me have, which I really, really need.

Tomorrow is a new day.

Going home. No answers. Sit and wait.

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I’m going home to see what happens next. The 48 culture never grew anything. No bugs. No infection. A little blood. All pretty normal. I’m armed with antibiotics. Exhausted from being in the hospital several nights. Sad there’s no verdict here. The attending plastics fellow was easy on the eyes. Bonus.

Two scenarios were presented to me. See if the frustrated skin and tissue calms down and reabsorbs, and the exterior sores heal on it’s own. Or. If it bursts allowing the outside world to expose the expander implant, have the implant removed and start over at a later date.

Hoping it all goes smoothly, heals as it should, I’ll be keeping close tabs with my teams. Monday I’ll be back for infusion, slip in to see Dr. M my primary surgeon for a quick look-see and hope nothing has advanced. Dr. K, the plastics doc, will be at Rush Monday also, so I’ll try to see him too, if I can make it happen. I have a standing appointment with him on Thursday, as well.

At some point I’ve got to let my radiologist in on all that’s new in my life. I’ll save that for somewhere in the middle of the week. Too much excitement for the last few days.

More in a few…

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Admitted

I showed up for infusion, flashed a couple of photos of my infection around, and got myself admitted for the next four days. Face plant.

They aspirated 400+ cc of fluid from the right breast mound. That’s a little bit more than a can of coke. My expanders have 450cc of saline in them, so on the right side I was at least double the size of my left, literally.

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They sent the chicken-soup-looking serum to the lab to try to see what type of bug is in there. It’ll take 48 hours to get the cultures to grow. So I’m here at least until Saturday. More likely Sunday, and that’s only after we see the response of the fluid release (does it fill back up?) and when we know if the fluid in there could have compromised my expander, in which case I’ll be in here a whole lot longer to have it removed.

Today I have no concrete news. I’m in no pain. I have no fever. And I have very little sensation at all along my incision site, scar and this behemoth hematoma looking monster infection. The liquid they withdrew was clear – a good sign. And I’m getting intravenous IV of antibiotics, through my port – which has to help. I’m a little bewildered how I got here, but I’m glad it’s being taken care of. And my boob shrunk to half it’s size – a very welcome release in tension.

3 steps forward, 4 steps back

I’ve been out of radiation for just over 10 days. I have contracted some sort of infection in my tissue from the radiation treatment and have been on antibiotics for almost a week now, with little improvement. A week ago I went back in to show the radiologist the expanded tissue mass on the right, and she prescribed an antibiotic treatment for 10 days. The following day I went to see my plastic surgeon to show him what was going on, to make certain the expander hadn’t been compromised. He was glad to see me, but told me this was tissue damage and edema related to the radiation, and doesn’t have anything to do with the expanders. He suggested I just continue to follow up with the radiologist. That was last Thursday.

Today, Tuesday after Labor Day, I sent a text message with a picture of my grossly deformed and swollen breast mound to my primary surgeon, Dr. M. I asked her if she was in on Thursday, infusion day, and would care to see it in person. She called me right back, asked about fever (none), pain (no sensation at all) and what type of ointments I was using. What I feel is bloated and off balance. Very warm to the touch, but only if I touch it. My breast mound is essential numb to me. But the skin is so taught its shiny. Slick almost. An now there is what looks like a hematoma projecting out from the side, where the expander isn’t – very near to the original diseased lymphnode.

She ordered an ultrasound, and raised the alerts at Rush for my infusion visit so that a wound specialist will see me and help figure out what to do next. My dad suggested it is something called “fat necrosis” which can happen after breast surgery, and would not cause fever. Dr. M agreed, it might be that. She wants to rule out an abscess with the ultrasound. If it were an abscess, they’d drain it. But if it’s fat necrosis, not sure what the action is. Might just work itself out.

The good news is I’m not in any real pain. And unless I look at it, I don’t feel sick. I’m uncomfortable and a little anxious because of how it looks and if I’m leaking through my clothing, but I know they’ll figure it out.

So, if you see me and I look a little cattywampus, no worries. I’m on it.

Day D-ONE!

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Today they gave me a beautiful badge to add to the wall of treatment survivors. They tried to make it pink, until I forced purple down their throats. Was emotional for me to thank them all and walk out of there. 33 days in a row is a long trip to take with a bunch of strangers. And I can’t say I walked away unscathed. But we hugged and kissed everybody and went on to celebrate with breakfast and mimosas for mumma.

My neck is sore.

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My under breast is sore.

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My armpit is sore.

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Mimosas help.

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And gifts.

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Feeling very spoiled. Very loved. Very lubricated. And very ready to move on.

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Day 5 set up

The new set up is actually quite neat.

They took a 3 dimensional image of my body and outlined my scar on the right side.

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They created a template from the outline, my scar is represented in blue. The goal is to hit 2 centimeters around the scar. This is the area most likely to have recurrence.

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They cut the outline out of a metal that is .5″ thick and really heavy. Earnst told me what it was, but I can’t remember. Something sparkly, but toxic. I had to wash my hands right away afterwards.

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They fit the metal template into the big machine.

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Then they add this extension thing to the machine so it gets really close to me, only a few centimeters from my skin. You can see the angle of the machine mimicks the angle of the original 3d drawing they proposed.

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It’s only one shot, takes 30 seconds, and I have a .5 inch bolus on me, of cool wet towels. I’m getting hit with electrons now. Previous 28 days were photons. I didn’t ask what the difference was. That’ll give us something to talk about tomorrow.

We ditched the X mark the spot stickers today, got a few new ones, and tomorrow will only take a few minutes to go from beginning to end. It was really claustrophobic in there today. I came home sobbing. I’m really sick of all of it.

Day 5, 4, 3, 2, 1

This is the last week. Today they’ll move the beams to just the scar area. Recurrence is more likely within 2cm of the scar, they tell me.

I’m a burn victim now. I’m blistered, seeping and horribly uncomfortable. They gave me narcotics for sleeping. It’s all very raw, sticky and sore. The doc says it’ll take 3 weeks to heal. For now I’m changing my shirt 2-3 times a day and soaking in these fizzy baths they gave me. Lubing up as much as my skin will tolerate.

5 more days. And then I rest. For a little while, at least.
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Burn, baby, burn

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Day 10

I’m fried. Every part of my skin that has never seen the sun is the deepest color of burgundy. This is underneath my right breast. Underneath my arm pit is equally as dark. Very tender. Some blisters. Some seepage. Some discomfort.

Today Dr. K saw me in the radiation room to check the open wounds. She suggested taking Norco to sleep, as I’m super uncomfortable on either side, when I sleep. She said it’s all very normal. This week will be the last of the overall area exposure. Next week they will concentrate the beam on my scar only, which should give all the overly exposed skin some relief.

Today is registration for Madison’s sophomore year. Next weekend she starts driver’s ed. 9 more radiation sessions, until I can put this phase behind me. Infusion this week, Thursday. Seems like the infusion every three weeks passes more slowly with radiation everyday. I don’t see the oncologist again until September. We will start planning the balance of my surgeries then.

Freckles!

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I’m starting to burn. Looks like a crescent moon under my arm. The freckles are popping out left and right. I’m a little than half way through radiation. Two and a half weeks left. It doesn’t hurt. A little warm. But nothing bad.

My BFF Michelle gave me a glass blowing class for my birthday. We finally rocked it out in the 2100 degree heat – two beautiful vases – and lots of extra help. You literally never stop moving in the process. Was a lovely distraction.

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The kids start school in just under two weeks. Counting the days until the house is, again, all mine.

Paper tape and toenails

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Back for more Herceptin and Perjeta. I’ve graduated to paper tape. I’m not at Rush long enough to require the wide/sterile/sticker bandages which irritate my skin to no end – especially now with radiated skin. So today we went with paper tape and gauze – a welcome relief.

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And, disgustingly, my toenails all fell off. One right after the other, popped right off. Doesn’t hurt. Looks ridiculous.

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There’s no one here for infusion today.
I asked if they found a cure and neglected to tell me.

Day 22

Today was my 11th radiation. 22 more to go. Tomorrow is infusion at Rush. Every 3 weeks is passing more slowly now that I have radiation on my docket everyday.

Still no sign of skin irritation. Still feeling pretty good, not too tired. Lots of hair coming in. You’ll catch a glimpse of me around the house without my helmet on from time to time now. Building up my nerve. I’m still pretty G.I.Jane, but it’s coming. It’s hopeful.

It’s psycho hot here, so everyone is laying low, finding their way through the basement, rekindling interest in old belongings. For the summer of Jeni, its working.

Day 28

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Big day today. Miss Jeanne had a mammogram today, and came with me to radiation. Met my team and saw the process. Snagged a picture of mission command for me. Dr. K high fived me on the way in. Miss Jeanne got a very thorough tour of my procedure and then we grabbed breakfast with Miss Martha and hashed through all the terrible sadness that surrounds us. I have to keep kicking ass at this to keep up some positive mojo. So much sadness all around. Kiss your people, people. Kiss and hold them tight.

Day 29

Every Tuesday they take film. Check to make sure I’m still in the same position, that the mold hasn’t changed, that they are hitting the target. It takes an extra 5 minutes and is done right on the same bed as radiation. If anything is off, Dr. K will make appropriate adjustments. So far, you can’t tell anything is happening. No redness or warmth. No fatigue. No nothing.

My toenails are all falling off. At first I thought I was just clumsy and tripping / stubbing them, but I’ve since realized, except for the wee baby one, they have all become detached and are falling off. Looks gross. I’m sure it’s a late effect of all the poison running through me. Chemo targets all fast growing cells, so it makes sense they’d be killed. Nothing hurts. As a matter of fact it all feels sort of numb. The surgery site included.

I am feeling pretty good. All things considered, this part has been very easy. My arms are working well. I’m getting more use to the foreign bags under my skin while I’m sleeping. I’ve even woken a time or two on my stomach – my preferred position. I’m less cautious of my movements, starting to forget about it. I never thought I’d get there.

I made a new friend this week. A survivor faced with unbelievable challenges. Was a great connection. Inspiring. Someone I may never meet but will always have by my side.
On the way to radiation this week, I thought about all the great supporters I’ve been blessed with, who I carry with me each day. Bracelets from Kory and Carmen. Tank top from Sue. Earrings from Jeanne. Wallet from Cynthia. Woven bag from Judy. Sweater from Martha. Oils from Janet and Jessie. Text messages from Bill. Phone calls from Dad. Its now, as my endurance is challenged, I am inspired by so many to keep putting one foot in front of the other.

Infusion next week, and radiation everyday until then. Hoping I have enough energy to end this journey with a trip back to my Aunt & Uncle’s place in Menominee. Something to look forward to.

Keep your chin up

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We had a great storm last night. Ended in a double rainbow… and a sleepover for Lilja at the neighbor’s house.

Today was day 32. As I was getting situated into my mold on the radiation bed, Earnest said, “Keep your chin up.” Meaning out of the field of the beams. Though I have to admit, everything is in the field of the beams. The radiation room is the size of the first floor of my house, and has a 10″ door between me and the outside world. The machine that shoots the laser can hit me through the table I’m laying on. I’m alone in this vast room for only a few minutes. I have two radiation plans. One for the breast primary. This one requires a warm towel on my chest to keep the beam from going too deep. The second is for the lymphnodes, and hits me from low on my right side. Today took longer than normal. The plan for the lymphnodes hadn’t been approved across all my treatments, so there was a pause in the middle.

You have to sit still for the whole thing. My arms above my head. Holding a bar. Earnest spent about 10 minutes getting me perfectly aligned. There are green beams of light that shoot at me from the right and left that are used for alignment. The bed I’m laying on has sheets on it that Earnest tugs and pulls at from side to side until the X’s they put on my body line up with the green dancing lines.
He moves from side to side until he’s satisfied, turns the lights back on and leaves the room. He’s got a great soundtrack. He sings while he works. He helps me off the bed. I like Earnest.

I had to move one session and they helped me do it on the fly. Piece of cake. The schedule is relentless, but at least they are accommodating.

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When I’m done and home I use an essential oil blend on the “breast” area. My childhood, family friend Jesse has, unfortunately, joined me in the ranks of the battle. She had radiation already and had some swelling and discomfort from the radiation. She came up with this formula of oils for morning and night that made a big improvement. So I smell a bit like an apothecary, but I’m hopeful I won’t swell up. My dear friend Janet had given me oils in the beginning to help keep me calm. I asked her to put the formula together for me, and she out did herself. I have enough for the next ten folks walking in my shoes. Thank you both.

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Every morning I see the same faces. The ladies are older than me. Tired. The room is small. People are friendly. We all wear blue. Sloppy, oversized, well worn blue. My dad called today to check in on me. Before he hung up he said, “Keep your chin up.”

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Day 34

Let’s count backwards. The next 33 weekdays I’ll be receiving radiation. Today didn’t count, but I sat on the bed, in my mold, and let them readjust, scribble new marks, and practice on my naked body.

For the bit of time I can see anything in front me, for the total of 3 minutes I’m being blasted, this will be my view. Today I stared at it for 20 minutes.

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The bed I’m on moves around, up and down. The machine moves around me in an open circle, coming closer, moving farther, standing still. Then some big, hunky guy named Earnest, helps me off the table, rewraps my exposed parts and high-fives me for sitting still.

Fortunately my arms are working well. I’m able to hold them over my head for 20 minutes without issue, and without discomfort of any kind. I haven’t started physical therapy yet. I do continue to walk the walls as the plastic surgeon showed me. It’s helping.

Ray Ray made the All Star team for 10U. We’re busy watching him enjoy himself and his teammates. I bought my first pre-made meal from Whole Foods. Smells fantastic. Will report back. And Madison is cleaning her room for the first time since she moved in there. Someone should check the temperature in hell. I think it’s dropped a few degrees.

Behind the helmet

9 weeks post chemo
6 weeks post surgery
3 days pre-radiation

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It’s not much, but it’s all mine.

X marks the spot

Today was the set up meeting with the radiologist. I was given a ct scan, molded and given alignment marks. The daily radiation process will ultimately be very fast.

I have a key card to alert everyone of my arrival, so there’s no check in.

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They made a mold of my back on the bed that goes into the radiation machine.
It’s made of micobeads, like a bean bag, and they sucked the air out of it with a vacuum. My arms go up over my head and hold that bar near the top of the bead.

Before
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After
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They added marks on me to make alignment easier – on my front and both sides
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The radiation room looks like this, the mold of my back is on that bed.
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This is the door in and out of the radiation room. It’s 10 inches thick.
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When radiation starts next week, we’ll have one dry run to get everything in perfect alignment, make any adjustments, then the following day start the treatments. They shouldn’t last more than 15 minutes.

And here’s the plan. Next week, off to the races
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The ole Pee in a cup routine

Met the radiologist today. She’s Dr. K. 8 minutes from my house and in a brand new facility across from the Whole Foods at Ogden and 294. She came highly recommended from my text-support friend Laura who was rather famous among the folks I met today. It was mostly a history review, embarrassingly admitting my college smoking days, yet again, and the details of my kids births, the death of my mother, that I have no known allergies, am emotionally stable (at least for the moment) and I possess a living will. Then they all checked out my sassy new boobettes and we got to business on getting to the point of the meeting.

It’s going to go down like this. No more fills. I can top off the new girls after radiation is complete. On Tuesday after the holiday I’ll have a mold made of my chest. They use some sort of microbead / bean bag type mold, suck the air out of it, and it holds my shape. This mold will help ensure I am in the proper position each time. And a CT scan to assist in planning. This will be the basis of my radiation plan. The following Monday we will have a dry run set up, they’ll mark my skin for exact laser placement/pointing with a permanent marker – NOT tattoos – which I will have for the duration of the treatment, which is 33 sessions. That’s 6 and one half weeks, daily M-F, lasts about 15 minutes. All summer. Which is bullshit. But this place is beautiful.

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I got the low down on all the side effects, too. Fatigue. Sun burn. Sun sensitivity. Changes to the suppleness of my skin. Supple is one of those words, like moist, that you sort of cringe to hear, yet they are all concerned with the suppleness of this and that wherever I go.

The best news is we are in the car on the way to my happy place – the U.P. – to see my Aunt Nancy & Uncle Don for the weekend and play with all of my cousins, my sister-in-law, my niece and nephew and all my Michigan girlfriends and their dudes. It’s a weekend to refuel. A desperate escape – our only one as a complete family this summer – to not think about fucking bullshit cancer and all that it’s robbed me of so far this year – and go home ready to face the second half of my story with a little liver damage and lots of fantastic memories.

Oh, and, they made me take a pregnancy test. I haven’t thought of pregnancy in 10 years. Tubal ligation thanks to upside-down-Ray-Ray forcing a c-section. I peed all over my hand in the process. You’re welcome.

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Here are the current state of the girls so you can get the image of me peeing on myself out of your head and back to happy thoughts, like cleavage.

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Salt n’ pepa

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Five weeks post op today. Still feeling pretty good. Still having trouble sleeping / getting comfortable. Hair and nails are beginning to come back to life. Looking very half & half on the hair color. Dark but also very grey.

I had my second fill today. That could be it until after radiation. Spoke with Nurse Sheila about how it goes from here. Three weeks after I finish radiation, I will return to their office (Plastics) to finish out the fills (can accommodate 100cc more total) and start consulting on the sculpting phase of the reconstruction.

We wait at least 4 months after radiation ends, before this implant/sculpting phase can start.

There could be multiple surgeries in the sculpting phase. Initially they will remove the expanders (what I keep having filled) and put in a permanent implant to the size of my liking. That’s outpatient. After that, there is some extra skin around my incisions on my “breasts” and along my sides that needs to go away, and each may be their own mini outpatient surgeries. I’m not symmetrical either, which is because they took so much more content from my bad side than my good one. Could take a few of these “little” visits to get it looking as “normal” as the new normal can get. It might be surgery … heal … surgery … heal … surgery … heal when comes time for all of that. Makes me wonder if I really need boobs at all. Shelia said it’ll be a solid 2 years before I start feeling normal. Implants are softer. Nerve endings will be healed, etc. by then.

My physical therapy consists of climbing up the walls with my hands, both forward and sideways. 4 times a day. It feels fantastic. And my mobility range seems great, to me. I have ZERO sensation under my armpit on the tumor side. And the weird chaffing sensation is slowly fading.

Tomorrow I’ll meet a second radiologist, much, much, much closer to home. If we click she’ll either have me finish out my last two fills before I start radiation, or we’ll just jump in and get started on this next hurdle.

More tomorrow.

First fill-er-up!

Today was my first fill with the plastic surgeon. My expander is a 550. Which is sort of like saying I’m a medium. They go up to 850 and down to 250. It can hold 550 cc of saline. I left the hospital with 350 cc in each side. Today I got 50cc more in each side. The expander – which is like a big balloon – has a port opening in it with a metal target. They use a hand-held magnet to detect where the port is, and that’s where they put a very fine butterfly needle in to pump in the saline.

Here is the device. The metal rod is the magnet. It points to the goal, just like finding money with a metal detector, goes completely erect when it’s hit the target. Once Nurse Shelia is confident she’s found it, she flips that metal rod over and it has a cross-hair type stamp on the other end, so she can put and “X-marks-the-spot” target on my skin in the exact spot. Looks like the swingline from Office Space, if you ask me.

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Miss Jeanne went with me and we watched in awe as they did, indeed, expand. Fair warning, that’s a boob with the needle and tube with saline pouring in.

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Definitely can feel the difference with my hands. Not so much by just looking. But I can tell.

I have wall walking exercises to do each day to gain some mobility in my arms. I can only raise my elbow to my shoulder. The nerve endings were damaged on the back sides of my arms, so this will help to stretch them out. Still feels off. Almost chaffed. But on the inside.

Earlier this week Bill and I met with the radiologist at Rush. We decided that since radiation is an everyday event, Rush is not the best option, from a commute standpoint. My new text friend Laura recommended her doctor near Ogden/294 at Amita. She was treated at Northwestern for her chemo/surgeries and also didn’t want to commute to the city so that’s where they sent her. Today Dr. K, the plastic surgeon, also recommended the same doctor, and so next week, I’ll interview her and if we connect well, I’ll get the ball rolling on what I guess is phase 4 of this journey – 33 sessions of targeted radiation. More on that next week.

I made two trips to the city this week – for building tours and meetings – used the train – not too tired or uncomfortable. Have had my sister’s dog gingy with me all week, so that has gotten me out of the house walking and getting fresh air, boosting my energy level.

The kids come home tomorrow and we’ll be back to chaos and volume control again. Though I think I’m ready for the demands and craziness to begin again. They’ve been facetiming with me each night to give me the low-down on their wave jumping, how much parenting Madison has had to do, and all the fantastic food they’ve been consuming. Jealous doesn’t even cut it.

The hits keep coming

Today was infusion day and 3 weeks post mastectomies. Other than a bit of a delay in getting started, completely uneventful.

We met with the oncologist who convinced us there’s enough evidence that I should not want to keep my ovaries. Timing for removal is sometime after radiation in the fall. Will force me into menopause. 44 is becoming a banner year. She was completely thrilled with my post-surgery pathology report and doesn’t want to see me for 3 months. 3 MONTHS! Good news.

Next we met with the surgeon’s assistant who checked the incisions, checked for swelling, gave me a prescription for physical therapy (with lymphodema focus – to help prevent / recognize) and doesn’t want to see me for 6 months. 6 MONTHS!! Additional, good news.

Next week we meet the radiologist and see what she says about getting started with that. Turns out radiology increases the risks of lymphodema since it’s going to be targeting lymphnodes – healthy ones and any compromised ones that may be left. I should get the green flag to start physical therapy next Friday, and the soonest radiation could start is 6 weeks post surgery, so I have a bit of a gap of time to get my act together on therapy and learn a thing or two about lymphodema in advance of radiation starting.

I’m still going to go to bat to post pone radiation until August, but it’s not sounding promising from most of my sources. It’s sort of the seal on the casket of my cancer. Making certain not one little cell is left behind.

My pain level is down to a 2 or 3. The hardest position to be in is laying flat. I’ve managed the side sleeping position without issue, but I’m also still sleeping with valium, which probably helps keep everything calm. I finally looked at the incisions and they look good, 1/4 inch wide scars. Because there are expanders, that make it look like I have breasts, my emotional state is sort of calm about the whole thing. I basically went from monster boobs to a solid A – but just for now. Next Friday they’ll start to fill them up – Miss Jeanne is coming with to see how that freak show works out. I am, indeed, a living science experiment.

Today is our last night of meal train, thanks Miss June, and I will uber miss it. The kids are heading to the beach with all my brothers, sisters and dad for a week. So next week will be work, quiet, doctors appointments and more quiet. A little something for everyone.

I’ll let you know what the radiologist says… and how the “filling-of-the-boob-balloons” works out. It’s ramping up to be a “winning” week.

I’m free!

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Last two drains came out today, along with all the sterie (sp?) strips covering my incisions. Miss Noelle came with to hold my hand while they pulled the tubes out. What a relief – I can now sit in any position without worrying about popping those grenades of body fluid open all over everything. Remarkably freeing and one of the last visible signs of this ordeal.

Couple little tidbits –
– no driving for another month
– No lifting, pushing, pulling, or reaching over my head for 2 more weeks.
– Physical therapy starts in two weeks.
– I do get to stop the antibiotics.
– I haven’t worn a padded bra, I don’t think ever – but holy shit they work.
– I’m healing beautifully, sleeping better.
– Have stopped taking the narcotics. But continue to switch between tylenol and ibuprofen as needed.
– My skin does not like the anti-bacterial soap anymore – but Nurse Shelia said 3 more days should do it, that’s all the time my body needs to heal the tube’s openings (who knew?).

Thursday of next week I have infusion at Rush. Will see the oncologist to go over the path report in detail. Will meet the surgeon to get script for physical therapy. Will meet the radiologist to figure out that whole business and then will get a night or two with my dad, sister and bro-in-law before they all head off to the beach for a week and leave me with the Ginger dog-face.

I’m going to ask the radiologist to let me postpone that treatment until the fall, if possible, so I can get the complete fills in my new boobs without interruption and so I can have some semblance of summer and walk away from all of this treatment for a little while. We’ll see. Not sure if there is a sense of urgency or not, where that phase is concerned.

Thanks for all the love.

Two weeks post-op

Before anything else, my pain level is down to a 3 or 4. I move slow, but I’m not hurting too bad.

Bill and I met with the plastics team today, we will continue to go once a week until radiation starts. Sheila, the nurse, was unable to take the last set of drains out. My output of fluid is still too high. These drains function much like a blister, really. The fluid looks identical. Mine just happen to be tapped to pool outside my body. Once I reach this golden number of 30 cc per side per day, that’s what my body is able to reabsorb on my own. No matter the levels are, by next week Tuesday she’ll take them out regardless, as the risk for infection with this open hole in my side is too great.

These are our very scientific tracking notes on our output.
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The big question today was how do radiation and the filling of these expanders work together. I only get 50cc per side per week added to the balloons in my chest. But I cannot have radiation at the same time. Radiation cannot start until 6 weeks (at least) post op. And the plastics team wants to put in as much saline as possible before I start radiation and they have to stop filling me up. The point being, they are “saving space” for the implants to come later and would like to have as much space as possible when that time comes. Radiation will toughen the skin, diminish elasticity and potentially change the outcome of my new bodacious ta-tas. I haven’t called the radiologist yet, but that’s on my list of things to figure out today.

Before you fall over and faint, this is my armpit.
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The incision has left a large, bulging mass about the width of my arm, making it very difficult for my arms to rest along side my body. Just below these incisions is where the drains come out – which is what is partially causing the bulging. I have very strange stinging sensations along the back side of my arm where it connects to my body. On both sides. It’s tight but also produces a sharp, burning sensation. Nurse Shelia of plastics said it’s all normal. Next week we will begin physical therapy to help loosen that up and get more range of motion in my arm. I am to remain sedentary until I see her next. Still no dishes or laundry. Can’t drive. Can, however, work with my laptop which we’ve cleverly rigged so I need only slide it onto my lap and off again. My arms definitely alert me if I can’t do something. So taking it easy is the name of the game.

Once they take out the final drains this is my new jumpsuit.
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Since I still can’t lift my arms above my shoulders for some time, this “bra” like thing velcros down the front and slips on like a shirt. The hoops at the bottom are supposed to be for the drains to hook to, but they’ve (the plastics folk’s) found that people are too swollen while the drains are in, and so it’s used mainly after those are removed.

I’ve forgotten to share and thank along the way, and so this is a long list of beautiful people who have been so kind and generous to us as we work through this recovery. The meal train, organized by Miss Jeanne, has been an absolute life saver. Thank you to everyone who has participated. The food is delicious and it has made our lives to much easier.

My amazing Arbonne family from far and wide has sent letters from all of the country of encouragement and kind words. I have a stack here of nearly 40 letters and trinkets from my sideline sisters, mom and grandma that have arrived nearly daily. It really is an extended family. And from our tagline the word “beneficial” means so much more to me now that it ever did. I can’t wait to see you all in person, at Impact, when I am finally back to myself.

My dad gets three huge cheers for taking our kids for the week I had surgery. We yanked them out a day or two early from school, to get them to Wisconsin, and they were off to the north woods. My sister and brother-in-law helped too. They had the time of their lives, stories galore – mostly gross ones about how my dad farts in public and cleans fish in his underwear – but it’s a bonding they’ll have forever. Bill will say it was a stroke of brilliance to have them gone while we figured things out here – they had a better time than we did – and I really can’t thank the old man enough for being so generous, even if he was introduced to Napoleon Dynamite against his will. He still had nice things to say about them afterwards, enough to make a mother proud.
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I’ve shared this before, but I loved it so much, it was my only blanket in the hospital. Thanks Butzer.
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Auntie Gretchen sent a “hug” which was here when I got back home from the hospital, I’ve mentioned it before too, but since then it’s been my only blanket at home. Softest, most wonderful fabric ever invented. IMG_8174

My colleague Trish sent a bouquet from FarmGirl. A favorite in this house since SharkTank – the flowers are amazing – but the design, packaging, presentation and graphics are equally impressive. Thank you.
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Miss Carmen’s 100 bloom orchids continue to delight, daily.
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PKV sent a sketch book which we started our bucket lists of 100 things we want to do this summer, inspired by Miss St. Arnold, though we may just end up stealing hers and following her around Chicago instead.
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And my beside reading, thank you Katie Hays, it’s keeping me in one place, which is exactly what all these doctors want.
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And last, but certainly not least, a day with my big little brother Caleb complete with b-ball, hoops, ice cream, portillos and yahtzee. A very special treat. IMG_8164

2 down 2 to go

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We saw the plastic surgeon today, and the nurse removed two of my drains. One on each side. They confirmed what we already knew, the wounds looks good, are healing nicely and I agreed to come back next week to hopefully have the other two taken out. The space where the drains were is just an open hole now, which may seep – totally normal – and I should continue to shower and keep it all clean. It will seal up on its own. I opted to stay in bandages over moving to the bra. The Dr. thinks that constant pressure will help force the extra fluid out of me.

Dr. K – the plastic surgeon – said the swelling under my arms on the sides of my body is very normal. I have very irritated insides with all the pulling and tugging they did and so fluid is surrounding those areas as my body’s own defense. My under arms are numb, which he said was due to all the severed nerves in the lymph node removal process. I have some raw spots on the backs of my arms from the ace bandages rubbing on me. Some of the discomfort is internal and from them monkeying around inside my body to get the devil out.

I asked how the pain meds work, if I need to keep up a schedule or just go on as needed. The nurse said as needed, and if I wanted to drop the norco (gives me funky dreams) I could just use tylenol with the valium. I’ll start that today and see how I fair.

I asked about the broken breast bone feeling I have in the middle of my chest. I’ve probably said this in earlier posts, but they detached my pectoral muscles to make room for the expanders to be inserted, and they pulled them away from the center, which is why my discomfort is focused right in the middle.

I asked if I can walk outside yet or leave the house and they said no. Not until the drains are out. They’d prefer I don’t sweat much and if I do to take another shower to keep everything clean. Since coming home I’ve had someone assist me in the shower. I was nervous at first – about my wounds hurting – but now I find the experience very endearing. Moms helping me like I was there own child, gently and gingerly making sure I’m completely clean and completely dry. There’s no modesty left for me. I’m so grateful for my ladies of the night who take such care in my well being. And cry right along with me when I can’t bare to look, and reassure me how amazing it looks. I love you guys.

The plastics team put a can of coke worth of fluid in each side of my expanders. After my stitches have healed, in about 3 more weeks, they will slowly fill each side with 50 cc of saline – that’s roughly a shot glass full. Ultimately the fluid will double its present volume – which is 350 cc. It looks like I will be about a C cup. But the breast mounds are much higher on my body and very firm, compared to those bitches that were trying to kill me. For someone who’s had huge boobs (DD+) since highschool, my cute little cleavage is sort of sweet. Sorry if this offends anyone, but seriously this is all about boobs, and here it is – completely free of stretch marks for now and forever.
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Dr. M just called about the one tumor she had resampled – to get a second opinion. It was the main little bugger that I original found and started this whole shabang – she didn’t like how prominent it still was after chemo. But the pathology came back clean again – all dead tumor. There is no live tumor anywhere in me and because my lymphnodes in my arm pit were clear she said my prognosis is excellent. Only 20% of HER+ patients respond they way I did. She called me a miracle.

I wanted to know when the radiation conversation happens and when I can expect to start that circus. She’s going to have the radiologist call me and talk through what the options are. I still have a long way to go with the plastics folks before they are finished with me – 3 weeks of healing – and then nearly 7 weeks of these slow little fluid fills. And depending on the radiation I’ll still have a surgery in the fall to put in actual implants and perfect any little skin bits I don’t like from the surgery to feel “normal” or at least look less like I had my boobs removed. I’m hoping some of it can overlap – the filling and the radiation – so that I can salvage some part of my summer to see my auntie in Michigan and play with my cousins at the end of the summer before school starts up again.

Two of my favorite coming-home gifts were this back rest I take everywhere from Kory Dalia and the sherpa blanket I nap with from the Gerks.
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This is the torture device I have to suck into everyday to expand my lungs. Hurts like hell but if I don’t do it my friends-turned-nurses are all over my shit. You suck in to raise the bar and hold it as long as you can bear. It blows.
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And last, but certainly not list, my hairs are coming back, fuzzy and mostly grey, but they are definitely coming back.
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Excellent news

Tonight Dr. M called with wonderful news. The 18 lymph nodes she removed from my armpit were ALL benign. Which is the best possible news we could ask for. I called my dad first and we both couldn’t talk as the good news sunk in. Let’s hope this means my chances for recurrence have just dwindled to nothing. She also said she didn’t get near the axcilla vein when she removed them, which also betters my chances of NOT getting lymphedema in my arm.

Recovery at home is slow going, but good. The pain is consistent but tolerable. The incisions are clean and dry. I’ve had daily help showering and redressing the wounds, thanks to Susan and Bill. They asked me to keep it up daily and use antibacterial soap in the process. I feels great to let the water soak my head and back. So refreshing.

Lots of stop ins and check ins to make sure there is food, water and even kleenex and straws – which makes sipping from bed so much easier.

I’m still tender and tight everywhere. Have very little sensation under my arms near my armpit or around my back. Feel tight across my chest and consistent pressure like a heavy weight or backpack is strapped to me. I’m sleeping propped up on pillows at a slight incline with my arms slightly elevated, just incase of drainage needs. It’s working. I wake like clockwork for the pain meds, as though they are lightly taping me in the night and calling my name.

The drains are beginning to lighten up their flow. On Thursday we’ll find out how many I can have removed. The plastic surgeon will also fit me for a recovery bra that looks a bit like a halter top that snaps closed in the front. It has hoops on the side for my drains to cling to, should I still have them. I think it will be looser than then this wide Ace bandage I wear now, which will likely relieve the pressure some too, making breathing easier.

I will sleep well tonight knowing that it’s all gone. No matter how sore my twists and turns are, those little devils have moved out for good.

Home

IMG_8126The surgery was a success. It feels tight and difficult to breath deeply. My arms move freely, but I can’t make any twists or turns. I have spent most of my time on an incline, with my right arm elevated incase of swelling. They gave me a blowing device to gauge my lung capacity and exercise my lungs, which I’m doing almost hourly.

Post surgery, around 3pm when they wheeled me into my hospital room, the pain was a solid 10 for the first few hours. The morphine drip didn’t appear to be working, they gave me something for muscle spasms that did help. Michelle and Bill were with me through dinner. There was some nausea. I was terrified to stand up to use the bathroom, thinking the pain was too much to tolerate. I did, eventually, get up and go with help from the nurses.

Day two in the hospital I started to itch all over, a side effect of morphine. They unhooked me from that and we switched to oral pain meds – hydrocodone and valium. That is working much better to take the edge off the pain. Misses Martha, Noelle and Blair came to visit and proceeded to lather me in lotion and scratch the morphine itches away – one on each leg, one on my back and head. Was pure heaven. Michelle and Jeanne came for dinner and the time in the hospital passed very quickly. The nurses gave me benedryl for the itches and its completely gone now.
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Saturday morning Bill came about 9 and they taught us how to wrap the wounds and care for the drains. The plastic surgeon gently unwrapped the ace bandage and gauze wrap to reveal the new me. I couldn’t look. Bill said it wasn’t as bad as he thought it might be. I only have a simple dressing on me, a gauze under lining and an ace bandage over it. There are steri-strips covering the incisions, which could fall off in time. They’d like for me to shower each day, and have the bandages changed daily. We are going to wait until later this afternoon to tackle that.

I have 4 drains, two on each side. Nurse Bill (Gaylord Focker) is emptying them, striping the lines of any clots and we record the amount of discharge from each port. Once the drain produces less than 30 cc of fluid in a day it can be removed. I see the plastic surgeon on Thursday, in hopes they will take several of these little plastic balls off my sides.

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Before we could get discharged we facetimed a few friends and family. Checked in on the kids and their northwoods adventures, and managed to catch my cousins and our nephew Ian, just quickly, before we headed out. The ride home was bumpy and uncomfortable. I was greeted by lots of wonderful gifts and surprises – a back rest for the bed – a book rest for reading in bed – a beautiful sherpa blanket and a soft cozy shawl – a book to keep me occupied and an unbelievable orchid that must have 100 blooms. Miss Blair came to check on me while Bill ran around and filled prescriptions. I fell asleep right after she left. Bill came home from his game around midnight and we checked the drains, had some pain killers and called it a night.

This morning I’m still feeling the overall tightness. Getting in and out of bed is slightly easier, or I’m getting the hang of it. Our kids are gone until Wednesday so I have nothing to do but rest and focus on me. Bill ran out for some food. He’s got a game today, but will be home early evening. Susan came to get the low down on our needs. She used rubbing alcohol to clean off as much of the iodine and tape residue as she could see. She’s going to come back this afternoon and help me shower and redress the bandages. Bill will be home early evening to help me through the night with the drains and pain meds.

It’s all very surreal. The surgeon Dr. M said the devil and all his babies are out of me. I can’t believe I’m home already. I can’t believe what I just went through. I can’t believe how much more there is to do. But, baby steps. One day at a time. At the very least I’m upright, eating, and very well entertained. So there’s much to be thankful for.

Hello from the other side

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Time

Time is a funny thing. When you think it’s all going too fast, it seems to start crawling. And now on the eve of the eve of this next big phase of this adventure it’s starting to spin out of control.

It’s an emotional roller coaster to say the very least. People say I’m strong. And yet not a day has past that I haven’t cried at least once about what’s ahead for me. The tears come without warning, now. Simple, kind words. Notes in the mail. Texts. Yet, the tears taste good.

I had to have papers notarized for my best girl, Shelly. Miss June, the traveling notary, was on the task. On her simple “drive by” I had her witness my power of attorney and living will documents that came in Rush’s surgery binder. We laughed about it, to start. And then the faucet set in. My tears were unexpected, much like my requests, to her. “You’re freaking me out.” Bill just smiled at her and rubbed my shoulders. Group hug. It’s heavy stuff. All the time. Thankfully I haven’t had to do any of it by myself.

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My Ocho loves had a little soiree with me Friday night. Around a warm fire, complete with wine and good food, I admitted my fears – it’s all so permanent. They just listened. Let me talk through my sobbing and high fived my courage when I was done. We raised a glass to #fuckcancer. They propped me right up, loved me unconditionally and sent me home full, tipsy and smiling.

A friend of a friend, Laura, has been kind enough to text with me about all that’s ahead. From sleeping positions to drainage tubes, clothing choices and how others can help. It’s been a welcome, open conversation with lots of nitty, gritty details from someone who came out the other end uncynical. Never met her. Hope I will. I didn’t realize how much I needed her and others like her, until I was so close to the jumping off point.

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Today, after considerable time and contemplation, I had myself photographed. Naked and bald, from the waste up, we took pictures that would make Annie Leibowitz proud. My friend and creative director Kyle help me visualize a shot list and set up that would work to capture the effect this journey will have on my outside. All in all I think we’ll do 4 or 5 more sessions. Try to get every phase in it’s simplest, most raw form. The photos are just for me. I actually hate having my picture taken, but once again, I’m running out of time. On Thursday my outsides and insides will be changed forever. I don’t know if I’ll ever really want to look back. But incase. Incase I do. I can. Thank you Jean for loving what you do, and capturing what will surely be remarkable moments in my history.

Tomorrow is treatment #7. No chemo this time. Only 1 hour total of infusions.
Tomorrow I say goodbye to my kids, they will be gone for a week with their PaPaPa.
Tomorrow is my last day with this body.

Special thanks to my sister for sending love for the trip to the hospital. I love you, Butz.
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Special thanks to my sister-in-law for sending books for recovery, so I can pretend I’m at the beach, too, with them all. Love you too, Katie Gayman. IMG_8106

My Ocho love, Nelly, had this week to spoil me. She brought this beautiful, bubbling water-feature. Soothing water sounds for my recovery. Bringing the outside inside.
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Miss Carm, another Ocho sister, sent this amazing gown for treatment. Designed specifically for woman going through treatment, it’s easy to put on without lifting my arms, and allows easy access to all that want to see what’s going on. Smooch Carm. You really heard my call for help on this one.
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The meal train has been such a god-send. Special thanks to Miss Jeanne for setting this all in motion. So many generous, kind, amazing people have helped us through this. Thank you all thinking of us, taking time and energy to make something extra for us. It has been a relief I can barely describe. Ashley sent this lovely bouquet with her meal drop off. Thank you all for your kindness.
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Two infusions

Christy called today, my chemo nurse. The insurance approved both HER+ drugs to continue. So instead of having just Herceptin I’ll also get Pertuzumab. These are not chemo drugs. They are targeted treatments for the HER+ trait. Each is half hour only. So a short trip to Rush.

Why does it matter? It means a whole year of diarrhea for me. Thanks. I was so happy about being done with all this nonsense. A little too soon.

I relayed my disappointment to Christy. It’s draining. She agreed. She called me back about 20 minutes later when she learned that the percentage of likelihood for that side effect with this new two drug combination drops by half. So, that’s better. But still. It’s really old.

My first 2 drug infusion is May 25th. Day before surgery. Side effects probably won’t be pertinent this time, since I’ll be on so many pain killers and narcotics, the combo won’t be true. We did agree to revisit the two drug combo with the oncologist later in the cycle, after my body evens out and I’ve had a chance to live through it a couple times.

The emotional toll of this all is starting to catch up to me. I went to see my sister this weekend. I needed to go by myself. I cried a lot. A lot on the way up. A little while I was there. A lot on the way home. Seem to have started a faucet. I’m nervous, I think. Mourning my losses. Tired of being tired. A little scared of not knowing how this is all going to be when it’s done. And feel. And look.

Not angry. Not exactly sad. Super emotional.

The process is long. And its always changing. And the parts I want to change don’t change in my favor. Stuff keeps getting added.

I’m only really just getting started and it’s getting old.

The results are in…

Today was completely fascinating.

I’m going to show you my cancer. So you understand the perspective, I am laying on a bed with a hole in it. I am on my stomach. My breasts are hanging in the hole. The right breast, is on the right side of this picture.

The tumor is on the right side, near the blue / lock-like marker – and looks sort of hazy. Above it, is a brilliant white, malignant lymph node.

Here is the MRI of my breasts from January.
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And from yesterday.
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HUGE shrinkage in the primary tumor. Very excited. High fives all around.

The lymph nodes, however, did not change much at all. And this has changed our plan of attack. Instead of having the sentinel node identified, removed and sent to the lab, we are going to skip that surgery all together and have the cluster of nodes in the fat tissue of the arm pit removed with the mastectomy. The original intention was, ultimately, to remove less nodes. Since none have shown a response to chemo, at least from the MRI’s vantage point, the theory now is a larger sum should be removed and recovering from a second surgery is not necessary.

They are hopeful that if they take out 10 nodes, for instance, 2 of them have cancer. Not all 8-10. This might mean some other surgery is in my future, more chemo, or some other strategy not discussed.

What does it mean? Frankly, we don’t know yet. Here’s what it could mean.

It could mean that the lymph nodes are now dead cancer cells, and are showing up because they took up the contrast (The dye used to identify the tumor cells) anyway, which is what lymph nodes would naturally do. The dead cells or scar tissue of the lymph node is making it visibly the same size as before treatment. Best case scenario.

It could mean that the pathology of the lymph nodes is different than the primary tumor (ie: NOT Triple positive) and didn’t respond to the chemo regime I was assigned. This might mean I have more chemo in my future, once we know what the pathology is. Not my favorite, but it is what it is.

It definitely means that I am now at risk for lymphedema in my right arm – which is a swelling due to fluid retention. I have a 30% chance of this happening, because of the amount of lymph nodes they are removing. This would be a chronic issue. We will just have to wait to see what happens. At the first sign of swelling I have an action plan to follow, to try to eliminate the problem before it progresses too far along. This was not good news to me, and, if I’m being truly honest, what I fear / have feared the most. I don’t want to contend with a swollen arm for the rest of my life. Or wear a sleeve. Or deal with it at all. But, like all things, it will not help me to worry about it – it won’t change the outcome, and so I will hope for the best: Dead cancer cells who can’t wait to get the hell out of my body.

I asked if I need to seek counseling for removing my breasts. The answer was “If you are asking, you should seek it.” There are people on staff at the Wellness House that can help me with this, and that was where my doctor recommend I go first. Get as much info as I can from anyone who knows anything, and the more informed I am, the more confident I will be, and the more emotionally stable I will become. I must admit, it makes me misty eyed thinking that I will not have my own breasts anymore. I fed 3 kids with them. They are part of me. I would not willingly choose plastic surgery, ever. They are, however, trying to kill me. There isn’t a better option in my mind than the path I’m on now. A nice, new, perky set might also make me misty eyed. In a promising way.

We talked a bit about radiation, but then decided it was something that could wait until after I get through surgery. We also talked a bit about the ovaries coming out, and there has been a study in the last 18 months published showing significant reduction in recurrence for patients who are ER+ (estrogen receptor positive). But, again, will table this until I get through the more eminent phase of this journey.

Lots has happened. And plans have changed. Bill and I both feel good about it, and we like the surgeon, a lot. We now have a meal-train started to help us with dinners through the next month. I wasn’t sure I wanted this, to start, but I’ve got to be honest, the meals look pretty good. Plus, less to think about it. My Dad and Butz & Kasey (+ the gingy dog) are taking my kids for the time I’ll be in surgery/recovering. They are going up to our northwoods family cottage in Watersmeet. It’s a holiday weekend, and the kids are getting out of school super early this year. It actually worked out great. I’m excited for them, and jealous – so thankful for the help and, again, one less thing to think about.

I’m feeling the aftermath of round 6. Still recovering from the icks. Getting my appetite back. Still managing the ‘rea. But I’m a bit jacked up on adrenaline with all that’s coming my way, and I feel like it’s helping me cope better with the side effects. As are gin + tonics. 🙂

There may be a bit of silence now, as we head into the big day. If not me, Bill will post after the surgery and let this audience know how I’m doing. I have an infusion on the 25th, so at least you’ll hear from me then…

Cheers, all. This too shall pass.

MRI

Today was my MRI. After a few – 4 – sticks in my arm to flow the contrast – we’ve concluded I will forever open my port instead of try to get an IV in my arm.

My good friend Jean took me down today, so I could ease into the machine on Xanax.

Other than an uncomfortably tight 20 minutes, it was all fine.

Will have results tomorrow at the surgery pre-op meeting at noon.

More then…

Nuelasta

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This is the crazy thing I wear on my arm out of chemo. Just as I’m receiving my last infusion of Carboplatin, Nurse Kristy puts this little box on my arm and it injects the needle into my arm. But it doesn’t dispense until 27 hours after it’s been injected. Around 5 pm today it started beeping, and then beeped consistently for 45 minutes while it depleted. After it finishes, the lights turn to red and I can peel it off. Right about the same time, the icky chemo flu sets in.

Not long ago, people receiving chemo would have to go back into the hospital to get a shot of nuelasta, and then turn around and go home. Big improvements in only a handful of months, really.

And, that was my last one. And this is my last bout with the ickys. Here’s hoping its gentle to me.

So Over It – Round 6

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Had infusion #6 today – the last one with chemo in it.

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Gave gifts to my nurses Sarah and Kristy – and my oncology doctor. Big, beautiful beach bags from Vera Bradley Foundation, that support breast cancer research. They loved them.

Couple of key items learned today. I’m low on potassium. Became dehydrated from all the ‘rea in my last few weeks, so I also failed my 24 hour urine test. We ended up using dosage numbers from round 5 to get by today. They gave me a potassium supplement to up my numbers. I’m still borderline anemic. 8.5. Anemic is 8.0. Keeping on eye on the fatigue and laying low/staying in for the next few weeks until the surgery date to avoid exposure or infection. And on the future treatment front, we are going to be talking about removing my ovaries. Since my cancer is Estrogen positive, removing all estrogen production is in my favor. If I choose not to do that, it sounds like there’s a shot in the stomach once-a-month in my future.

If you’re keeping score at home, that means I’ll have: 1 infusion every 3 weeks, 1 oral drug everyday – for ten years I confirmed today – and this shot in the stomach to cease estrogen production once a month – this may also be a 10 year gig, was a bit shocked by this news, and didn’t ask more questions.

Miss Martha was kind enough to stay with me all day today. We had a lovely brunch from Au Bon Pain and lots of laughs while I was infused with benedryl. Nurse Kristy looked a bit like the cheshire cat from alice in wonderland, with a brief transformation to golum, my precious. I think I better stay clear of the medical marijuana. I don’t think I’m cut out for these things. I was, I will admit, entertaining myself.

No reactions today. Only the giggles. Infusion was flawless on all counts. We got out of there in record time. I did not ring the CHEMO BELL. Was too happy to be out of the chair. But will do it when all the infusions end. Still lots to do, but chapter one is now closed.

Next week is the MRI and pre-op meetings Tuesday and Wednesday, respectively. We’ll learn how well I responded to the chemo, find any / all lymphnodes and further flush out how the day of surgery will play out.

Ocho love arrived yesterday from Miss Carm – a Reflexology appointment and some other goodies. I wore her bracelets to treatment today to bring her along with me. Love you, your honor.

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And a HUGE shout out to the dynamic trio I’m fortunate to work with. Completely outdid themselves and it looks divine. Thankful my chemo will force me to move slowly through this big box of love. Thank you A.N., B.D. and M.C. I will put it to good use celebrating milestones!

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Decisions, decisions

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We met the plastic surgeon and the cancer surgeon, figured out the process and formulated a plan.

It will unfold sort of like this.

We decided on a double mastectomy with immediate reconstruction. Several factors played into this decision. One – the cheK2 gene mutation I carry, indicating a higher likelihood of recurrence. Two – strong family history of breast cancer. Three – I don’t want to do this again. Four – I can control the outcome.

The process is long.

One week before surgery I will have my sentinel lymph node identified and removed for cancer screening. This will determine how far the cancer has spread and if it is outside of my breast tissue. It will help give the surgeon a clearer picture of how the axillary (armpit) portion of the surgery will play out. This is on May 19th. Results on May 23rd.

Main surgery is May 26th. The mastectomy surgery will take roughly 5 hours. The two surgeons work on me one right after the other, to lessen the time under anesthesia. So, as primary surgeon finishes one side, the plastic surgeon steps in to do his part as she moves on to the other side. I wake up in recovery 2 hours later and stay in the hospital for 2-3 days.

I get to keep my skin. The incision is the shape of an eye, right over to top of the nipple. I will lose my areola and nipples. I may lose all sensation on my skin. I may keep some of it. Nerves are severed when the breast tissue is removed. The surgeon said I can expect my chest to feel tight, as though I can’t catch my breath, post surgery. Beyond the soreness of recovery itself.

The plastic surgeon will put in spacers in place of where the implants will be, filled 50% full. I will be wrapped like a mummy with 2 drains on each side. I can’t lift anything for 2 weeks. After 3 weeks I can start to rebuild muscle – they will give me exercises for this. After 4 weeks I will start radiation therapy.

Radiation will last 6 weeks. 5 times a week. Only a few minutes a day. This has potential to both burn my skin and give me blisters. It will toughen my skin and diminish elasticity on that side. Breast implants go in 6 months after radiation ends. This allows time for my skin to heal from radiation.

I start Tomoxifin, an oral drug that inhibits estrogen, after I finish radiation. I think I am on this for the rest of my life.

Tomorrow is my last chemo infusion. Number 6. After tomorrow, I’m going from 4 drugs down to 1. The infusion time is only half hour after tomorrow. I will continue the Herceptin infusion, every 3 weeks, same as I do now, until January 2017.

And that, dear friends, is the majority of what we learned today. It’s a lot.

On the way home I texted Dr. F, the original radiologist who started me on this journey. He called me right away. Thankful to hear my voice. Happy I’m doing well. Glad to hear I’ve finished this phase of the journey. He asked me to stop in when I’m through the woods. Good guy.

May will not be my favorite month. This will not be my favorite year. But I’m thankful I’m nearing the end of this part of the story. Feeling informed is a relief. Having a plan is comforting. Still thankful I landed at Rush.

A few surprises landed at my doorstep.

Thank you to the Lopez family for this lovely arrangement.

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Thank you to my colleagues, all the way from Poland. I will find my happy place thanks to Kristy and Lauren.

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One of my cherished childhood friends sent this completely awesome handmade bag with all sorts of State Street goodies, some from stores we would venture to, back in the day. Ms. Stadler, my cup runneth over. Smoooch. Will keep me very entertained tomorrow!

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Little did Miss Blair know this is my all time favorite graphic designer – an illustrator I’ve seen speak multiple times – whom you’ve surely all encountered at Land of Nod, Anthropologie and Free People… Thank you.

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And in anticipation of tomorrow, the fabulous TTT send a box of brightness to cheer away the chemotherapy. Let there be silly string!
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Infection

Sorry for the long silence. Can’t quite recover from round 5, and round 6 is looming on the horizon.

My toe has become infected and I’m not able to heal on my own. After the 5k in Boston with Caleb and Butz, my toenails all got a little funky. One became annoyingly infected and isn’t improving. The nurse called today and is going to give me a 10 day antibiotic to help it along. I’m assuming it will help all my other little nicks and bruises heal up too, as it seems I can’t repair anything anymore.

It’s been a long few days. No energy. Days and days of upset stomach and endless ‘rea. Plus a few fun-filled days of random dry heaving. They tell me it’s all a cumulative effect, and so I’ll grin and bear it.

Only one left. And then the real healing begins.

I can almost see the finish line.

The zen of being anemic

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Being anemic is a bit like wearing a hundred pound body suit around. It’s exhausting. Thankfully, I’ve made it through to the other side of chemo, and feeling less flu-like and more human is helping me appreciate being upright and yet still. I am winded by walking and doing the dishes. Exhausted climbing the stairs. But if I sit in one place, and focus only on single tasks, I feel human again, and for that I am grateful.

This weekend was a hard one. More than 48 hours of the ‘rea. I spent most of the weekend between bathroom and bed. They tell me the effects of chemo are cumulative, and I will have to just succumb to what it is. This too shall pass.

Our family was the recipient of much community spirit this weekend. The girl scouts came to clean out our flower beds for us. Several young woman working towards their silver level badges came over on Sunday, along with their parents, and raked, pulled, blew and bagged leaves and weeds. It was a beautiful afternoon, warm and sunny, and they were so generous with their time and talents. Our family – minus me – was able to help get in on the acdtion and much was done in a very short period of time. Thank you to the Lavaty’s and the other girls who were so kind and generous. You did a wonderful job. Very much appreciated.

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To add to the beauty of the season our backyard neighbors brought over matching planters for the front stoop. Nothing brightens your day like surprise flowers in ever bloom. Thank you Matericks. Gorgeous.

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My ocho loves pulled off another massage party fund raiser in my honor. A day at the spa was had by many – thanks to the hosts – the Kostecki’s – all the participants – and of course Heidi – the fabulous masseuse who puts everyone she touches at ease. I was unable to partake due to my chemo recovery – but this beautiful spa basket arrived filled with love letters and more from all who were there. Thank you all for your generosity – and such kind words. Hoping I don’t embarrass a certain freshman – who’s poetic note touched my heart. What a guy.

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And of course, what’s a birthday without a few birthday presents? If you haven’t been to Aly’s Gluten Free Bakery in Hinsdale YOU ARE MISSING OUT. My dynamic duo colleagues of TTT & CAS at Forethought Marketing were kind enough to send me out for some birthday bakery treats – and holygoodnessofbakedgoods – GO THERE. I got a little bit of everthing – breakfast, lunch and dinner.

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Chris and Gretch sent over a big, glorious, fruitful box of Navarro wines. And though I cannot partake today, there will be clinking in my very near future. Lots, and lots of clinking! Smooch! Thank you!!

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We are just getting our schedules straight for all that happens to us in May. Organizing kids, classes, meetings, surgeries and more. A special thanks to everyone helping us juggle this big circus performance – no matter what it throws at us – we have been blessed with an unbelievable bounty of friends and family with no shortness of extra limbs and hands.

Here’s hoping there’s nothing to report until May. SMOOCH.

PS: Thanks for all the rage on the DMV. Though I appreciate the sentiment, they are each suffering their own little demons without my help. I’ll give ’em a hall pass.

The DMV

Worse cancer day of my life.

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Walked in to have my license renewed, all was well until the photo.

They operator requested I remove my scarves. “We need to see hair,” he said.

“I don’t have hair.”

We need to see your hairline.

“There isn’t one. I’m bald. I have cancer.”

“It’s the rules.”

“Get me a supervisor.”

Two appear. They talk among themselves. “Sorry m’am,” Dope 1 says, “It’s our rule.”

Hmm. I’m beginning to tear up. I have to keep this thing for 5 years. I ask if they can use my old image. “no.” Can you grant me an extension for 6 months? I’m almost done with chemo. “no.” There must be some compromise. Please. Have some compassion.

Dope 2 sees that I’m close to meltdown. “Could you just push the scarves back enough to see part of your brow more?” I oblige. Sit down. Glare.

He hands me the card. I walk to the car. And all the tears release in the parking lot. Sorry, Jesse White. You missed teaching compassion to your robots. I’m embarrassed for your office. I was humiliated today, because I’m lucky enough to have cancer. ASSHOLES.

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Round 5

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Miss Jeanne picked me up bright and early (7 a.m.) this morning for our commute to the city. It was a long day, but very informative, and everything lined up perfectly. Shelly met us down there and there was a nice surprise visit from Miss Jenn. We were back home just after 3.

This is Kristy – the beautiful young oncology nurse who takes such good care of me and has the BEST sense of humor. She sports a HUGE blue hazmat suit when delivers the poison to me, which we’ve lovingly called, “the blue body condom.”

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My meeting with Dr. R (Oncologist) was very enlightening. I had lots of questions for how things go after round 6 – the final round. The answers unveiled themselves throughout treatment, but it went something like this:

She didn’t have any details on the surgery process so she set up meetings for me with both the surgeon and the plastic surgeon for the day before next treatment – May 4. The plastic surgeon is in LaGrange. My questions are all about process – what’s he going to do if I pick A/B or C surgery options. A= Double Mastectomy B=Single mastectomy C= Lumpectomy. My intention is just to get head wrapped around what it all means before I have to make a decision about it on May 11th, the meeting to discuss the MRI outcome.

I learned that A/B = 2 night stay in the hospital only. And C= Outpatient.

The same meeting will happen with my surgeon on May 4th at Rush downtown. I want to know what happens to me in all 3 scenarios – how long is recovery, how will I be able to function / care for my kids once they are out of school. How much extra help will I need. Planning questions for answers I don’t yet have.

I will also drop my final 24 hour urine on the 4th, have my port opened and blood work done for the last time – for chemo.

After the chemo is over I will continue infusions for the HER+ drugs – at least for Herceptin – Pertuzumab is still out for debate if I need to have it. No more benedryl or steriods. No more allergic reactions. No more blood draws / urine samples before treatment. The infusions are only 1/2 hour each. I can drive my self. All welcome news. The 3 week schedule remains the same, I will only meet with Dr. R every 3rd visit and the side effects for these target drugs are minimal if at all. I will continue this infusion until January 2017.

My hair should start to return after a month off the chemo – mid June.

Couple of bits of less than happy news I received – I’m becoming anemic (low red blood cell count). Making me really tired. If the exhaustion continues I’ll need a blood transfusion. They gave me a list of all the possible side effects to watch out for, in case I need to go in. I also have developed neuropathy in my hands and feet. Tingling like pins and needles. I drop things sometimes – annoying. But doesn’t last more than a few minutes. Could last a while – couple months. And my ankles are swollen – a side effect of the chemo drugs. But since my heart is so healthy, Dr. R is just going to let me live with it. It should reabsorb once the chemo is out of me, sometime in June.

I have to have surgery (TBD) within 4 weeks of my last chemo infusion.

So – here’s what’s next.

The next 3-4 days will be ugly flu-like days. I have the nulasta (white blood cell booster) on my arm. Will inject tomorrow around 5pm. That’s about when the sickness sets in.

May 4 – Planning/Learning meetings with Dr. M (Surgeon) and Dr. C (Plastic surgeon) Plus normal lab work at Rush downtown

May 5 – 6th and FINAL chemo infusion

May 10 – Breast MRI to check progress to help determine surgery options

May 11 – Meeting with surgeons and radiologist / nurses to determine best course of action

Either May 19 or May 24 – Surgery – TBD

Sorry for long post – lots to think about and learn these last few days of the chemo Phase.

Miss Jenn sent over a plum basket of organics and seeds. Thank you. Beautiful

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Miss Jeanne’s senior class drew me cards and letters. So were really beautiful. This is just a little sampling. They are spectacular. Several graphic designers in the mix to be sure.

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Happy Birthday to me!

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What a fantastic day. It started with orchids and bouquets from the kids and big home-cooked breakfast from Bill. A sweet stop in from Susan and beautiful plum tulips. Michelle picked me up for my pre-treatment day at Oak Park Rush. Had an echocardiogram to check for damage to my heart from the HER+ drug herceptin. Found no evidence of compromise. Phew. Dropped of the 24 hour urine labs and had my port accessed and blood drawn.

Michelle and I met Heather Nelson for lunch at Kyber Pass Indian buffet. Delish. Heather brought a beautiful bouquet. We had a lovely long lunch and talked hours away.

I returned home to find Liz and plum orchids. Lots of birthday cards and well wishes. Michelle unleashed a price find of skeins of yarn and more than a dozen sets of needles in big chunky sizes – super fab gift.

We ordered a sushi dinner for all at night, and I headed over to Nelly’s for some much needed Ocho love after that ridiculous show of ignorance at the DMV. We made marginally good purple bunny martinis, macaroons and lots of other yummies. I stayed WAY past my bedtime for my early morning wake up for round 5 – but it was well worth it.

So much love and friendship all around. From all the facebook messages to all the special people who found me for my big 44 – thank you for making it so special.

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PAINT IT PINK!

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My sister and I managed to pull off a HUGE surprise this weekend. We showed up unannounced at my brother Caleb’s office to spend the weekend with him and Katie in Boston and participate / support him in his Race For the Cure 5k. He was the 3rd highest fundraiser – and got this vibrant pink cape to wear during the race as a reward. It was a beautiful weekend with blue skies, lobsta rolls and lots of laughs. Caleb had absolutely no idea (thanks Katie!) and it was so great to see him poop himself over and over while we indulged in clam chowda and cocktails.

We spent one day at the beach in Essex, too. Though cold, was fabulous.

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I’m bracing for round 5 on Thursday. I got a cold a few weeks back that I’ve been unable to shake off. My immune system is not what it once was. I wore a mask on the airplane to and from Boston, to not add anymore damage to my already compromised self. I’m hopeful I’ll still have treatment this week, and my white blood cells aren’t too low for infusion.

I have a big day Wednesday – echocardiogram and blood work at Oak Park and then lunch with my cousin Heather and Shelly at her favorite Indian restaurant. Some fun dinner plans with my family and purple cocktails with Ocho in the evening. Happy 44 to me.

Belated thanks to my Aunt Nancy and the Gehrke clan. They sent a big box of beautiful oranges from sunny florida – which we’ve already inhaled. Included was a lovely handmade shawl, for warmth and love during my recovery.

My Aunt Heidi and Uncle Kevin sent birthday love.

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Our longtime friends, the Mannings, sent a lovely note and dinner for the family while I’m recovering.

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And my little neighbor Kalya’s YC class made me an unbelievable envelope of get well soon letters that are completely fantastic.

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Will let you know how the echocardiogram goes on Wednesday. Cheers.

Round 4 is history

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It’s starting to get serious around here. The amount of notes and texts from my lack of updates has reached epidemic proportions. I made it out the other side!

Not unscathed, but I am getting better. Ridiculously tired. A bit of chest cold to aid in my health issues, but only one night of the bad ‘rea and gone by morning. NO RASH. That sucked.

It’s been an epic few days. I was able to visit with my Auntie and Uncle of Krumlov over the weekend, for lunch. Was lovely. Can’t wait to travel overseas to see them next year. My cousin, Martina, and her beau, Kyle, came too. Glad they fit me in.

Bill and I invited ourselves over to the Berg’s for Easter dinner. Miss Martha (pictured above) out did herself with ham, spaghetti, green beans, loaded mashed, salad and more. I brought the wasabi dip with asparagus, for which I have now become famous, though all credit goes to CKD. My brother and sister-in-law had my kids for the holiday, and a giant feast of their own. Was strange to not have everybody here. The Easter bunny found them in Boston and back here, too and everybody has been been pounding the reeses peanut butter in every extruded shape known to man.

News on the cancer front is two fold. I have to have an echocardiogram on April 13th to see how my heart is fairing on these chemo drugs. That is the day before treatment #5, at downtown Rush. It’s more or less like an ultrasound, not painful at all. My final “test” is a breast MRI scheduled for May 10th. It will define the conversation for surgery – the conversation is happening May 11th. For the breast MRI, imagine you are superman, without a bra, on your stomach, on a gurney that fits into a huge donut, with your boobs in a sling. Got it? Now sit still for 20 minutes while star wars sounds ignite all around you. Super fun times. Depending on the direction of surgery we choose, if I have any breast tissue left at the end of it, breast MRI’s are my future mammograms. I’ll make tshirts to commemorate the joy.

On a lighter, though exhausted note, I made it out in public two full days this week for work. Took the train, met up with colleagues, had two pitches and a tour. I am proud of myself for reinserting my body into the real world. I haven’t been to a work related public event in nearly 6 months. It felt great. They assured me I looked okay, and I think I assured them I can do this design life and the big C simultaneously. I have been working all along, but as you may not know, I do it in my pajamas, on my couch, rarely leaving home. A plus for my current situation, indeed. Fingers crossed the extra anxiety this week turns into some hearty work for the rest of the year.

Things I’m looking forward to? Breakfast with my ocho friends on Friday, a nice walk with Miss Jeanne in the morning, and the beginning of the spring sports schedule. Oh, and I’m 2/3 done with CHEMO! Yay me!

The day after round 4

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Our friends and neighbors are sending messages in the sand from their beach vacation, far far away. Bill and I are enjoying the quiet. Kids are on the east coast visiting our young cousins in Boston. Took a very late flight but woke up to donuts and high energy excitement. Some photos of their adventure follow. It’s spring break for them this week, and they’ve spent most of it just playing with friends, getting hair cuts and cleaning their rooms. This is such a welcome distraction. We won’t see them back here until Monday – plenty of time for me to recover from this weekends pile of ick I have to endure.

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I also received a nice note from Aunt Heidi in WVA and well wishes from my Uncle Jim in Sheboygan. And am expecting a visit from my Auntie Jana and Uncle Brad on their way back to Krumlov, Czech Republic tomorrow. All the text messages from friends and family too – And MY DAD learned to FACETIME. Hell might just freeze over yet. Well rounded love for Infusion 4 from all over the place.

And today’s special thank you shout out to CAS for the plum tulips. I’ve been so tempted to buy some myself, recently, you just read my mind. Reminded of the time Connie sent that bushel of tulips to me after we clinched a client – remember that?? Too bad the designs scratched his desk and the whole job went to pot. But the flowers were FANTASTIC. Go big or go home. You are the best.

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Four in the books

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Today was flawless. They upped my steriods to avoid the reaction to Taxotere – and it worked prefectly. They also upped the initial intake of benedryl. So I was really loopy and terrific company in the “pod” today. I sit in basically a oversized recliner. They preload me with 3-4 drugs to counteract side effects – for ‘rea, puking, reactions and the steriod. Each individully. Then I receive and hour each of the two chemo drugs – Taxotere and Carboplatin. After that I get two HER+ attack drugs – Pertuzmab and Herceptin. Then we bolted.

I wore my harley ass kickers, to get the job done.

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Here’s the tower of the cool aid infusions:

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My view from the barcalounger:

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At this moment, I’m all jacked up on the extra steriods. Felling fine. We’re on our way to send the kids off to Boston. I hope it’s flawless as well, though we’ve seen snow flakes.

Dinner tonight was from my cousins, The Nelson’s who live in the city. Thanks so much, Cindy, Dave and all. It was nice to check it off the list without ever thinking about. Bill and I will survive.

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Michelle, who has come with me for all of this nonsense just returned from Belize on a school trip to scuba dive and see the fishes. She brought me a lovely collection of danglies and some gentleman. Also worry dolls to put under my pillow to take my cares away.

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Inside the magic Ocho box from Miss Blair – a fantastic writing pad and pencil bag. I love it. Watch out for little notes of friendship in my thank you cards to come.

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Shrinking!

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I went in today to drop of my labs, have my port opened, blood drawn and have a mid-way look at how things are going. I had a mammogram and an ultrasound of the various areas affected on the right side – essentially the primary tumor and the malignant lymph nodes. Though slight, the tumors are shrinking. The original lymph node I found all those months ago, the one that started this journey, began as 1.2 centimeters and is now 1.03 cm. One of the original lymph nodes they couldn’t find at all. Not sure if it’s too small, shrunk or ultrasound technology isn’t sophisticated enough.

To be honest, I had know idea what to expect today. I’m thankful it shrunk, obviously I’d prefer it were gone completely, but all things in good time. The radiologist shared with me the process for surgery. After my last chemo, when I am feeling better – probably a week after infusion – I will have an MRI, with follow up ultrasound to “tag” (leave dye or marker) on the various nodes they want to remove, that are outside of the breast itself. Then we will all meet together – the surgeon, the radiologist, Bill, my dad and myself to choose a surgery path. Granted, that’s all assuming the affected areas have shrunk to everyone’s liking. If not, there could be more chemo rounds before this next phase launches.

I go in tomorrow, very early, for round 4. I will be online much of the time, working, while the poison flows. Michelle is coming to sit with me. My brother, Caleb, will receive the kids in Boston tomorrow night for a long weekend with his family. It’s the kids’ spring break this week, and they are anxious to get on the plane and get out of dodge. Bill has Friday off and will help me through the icky parts of this journey over the weekend.

These last three weeks have been relatively uneventful, in terms of side effects. No rash. No bad ‘rea. Nothing to report in terms of new side effects.

We did have a great visit with my cousin Sue and her daughter Wynn last weekend. Went to the Museum of Science and Industry, and some cocktails and played lots of yahtzee. Was great to forget about all the shit going on around me and just laugh. It was fantastic. I had a very powerful reiki session with Kory on Sunday night that left us both in tears. Perhaps some anxiety about today’s results, and some pent up worries released. I don’t spend a lot of time worrying, but these energy healings always bring me to tears.

So many lovely surprises have come our way.

Yesterday a new friend of mine, Mary, brought parking stickers for Rush – very timely – and really helpful. Thank you.

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My Aunt Kathy sent this lovely necklace. Flip flops. My favorite.

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My colleague Beth sent a beautiful silk scarf from Anthropologie.

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A fantastic goodie bag from our neighbors, the O’Briens. Really thoughful – I especially like the Be Brave bracelet.

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And this last one is for tomorrow. My favorite moms, my partners in all things questionable, have taken turns spoiling me on each of my treatment days with bags filled with surprises. This one has been tempting me for days, as Blair is on vacation this week and brought it early. Something to look forward to tomorrow. Ocho love.

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Out and about

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With my back heeled, and the worst of the side affects past me, we had a night on the town to support our school. I found a fancy helmet, wore lots of extra make up to fill in my eyebrows and eyelashes and really had a nice time. Though I tire so easily, and can’t seem to quench my thirst ever, it was nice to be out.

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I’m hopeful the next 10 days are without incident. We’re getting ready for baseball season here – B ball for Ray Ray and softball for Madiboo. The balmy weather helps. Day light savings today – longer nights of kids playing outside. Bring it.

My cousins Joe and Annie sent a beautiful care package with a nice, new, soft hat and shawl. And my second mom growing up, Sharon, sent this lovely jewelry set, with beautiful, cool stones. Love it. Thank you.

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It’s gonna be okay

I’m out from the dark side, again. Beautiful, warm sunshine here today. Birds chirping everywhere. Little signs of spring all around.

Dad is heading home from Texas this week. Will be back in the great white north by this weekend. I asked him to be part of our upcoming surgery conversations, help us make good choices, and understand the impact of those choices. Will have an ultrasound on the 23rd to see how the tumor is responding. It feels different to me now. I couldn’t find it, originally, without one arm up over my head. Now it’s much easier with my arm down. Though the shape and texture are different, now. Surely has something to do with weight loss, combined with the steady stream of toxins flowing through my veins.

The new ‘rea drugs are helping. Started taking them much sooner this time, and has made this bout of aftermath less of an urgency, for which I am thankful.

The Moore aunties are in Vietnam now, on a tour. They lit incense in my honor, and surely for David and Cindy’s, too, as we’ve all been on up hill battles of late. I love this photo Joann sent. Looks like a painting. Can’t quite tell up from down. Sorta like chemo.

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Their note reminded me to juice up my diffuser – not sure if you can see the stream of vapors – the scent is an anxiety relief combo from Janet – fills the room with something extraordinary – like I’m someplace else.

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At the new year, Uncle Brad told me he rang the bells of the tower for me. He retired to Krumlov, Czech Republic a year or two ago, and has been Brad of Krumlov, a majestic medieval village, ever since. Ringing in the new year. To good health. So far in this journey I didn’t choose I have stayed closer to family far and wide, reconnected with friends new and old and am grateful for how powerful those relationships are. I didn’t hear the bells. But I felt it. I didn’t light the incense, but I can smell it.

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With luck you can hear them…

https://www.facebook.com/jana.kuplic/videos/10208347434980718/

Bracing for impact from Round 3

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Feeling pretty good today. Have a new arsenal of medications to keep up with. The doctors were kind enough to give me something for my pulled muscle, which worked like a charm, and I’m moving about again without too many groans.

Once the nulasta shot injects this afternoon I’ll be down for the count. This is the white blood cell booster I wear on my arm. Immediately following that injection I slide down hill for a few days. Here’s hoping it’s short and sweet.

I was blessed with more care packages and cards last night and today, and special help from friends with the kids – rides and playdates for their afternoon off. Bill and I appreciate everyone extending a hand to us as we juggle my ups and downs. I can’t drive for 3 days following treatment. I’m a little shaky and don’t feel comfortable behind the wheel. But it hasn’t affected the kids schedules thanks to so many good friends and neighbors. Thank you.

Special thanks to my Rev it Up leader, Kris and her family, for the Life is Good plum box of fun.

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And my long time colleague and friend Kelly for the beautiful sweater and perfectly timed heating pad filled essential oil aroma. My back can’t think you enough. It’s perfect.

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Jenn sent over the perfect crochet plum helmet!

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And Brendy, Shelly and Monty brought Indian food and recipes to the door. The house has never smelled better than when Indian food is what’s cooking.

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An aloe plant from Liz and the good vibe bamboo from SusieQ.

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Personalized plum stationery from my love, Rachel.

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A combo shot of the cute earrings from Miss Jeanne, the plum scarf from Kris and Kelly’s super soft chenille sweater.

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And, last, but certainly not least, my wall of kind words, prayers, short stories and all of the drawings and knock, knock jokes that I see everyday – and expands daily. Thank you all so much for reaching out. Every bit of encouragement refuels me.

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Round 3 is in the books

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Was a better day, morning commute took much longer than expected. Doctor was late, again, by 45 minutes. But, chemo was ready on time, so that ended up being okay.

Had another allergic reaction to the the taxotere. Initially the work around was more benedryl up front. Double dose. But since I reacted anyway, they put in more benedryl and added a steroid and adavin (for anxiety) to the mix. When they hooked me up at a half-speed-drip I was able take it without issue.

Dr. R (oncologist) gave me somethings to help heal up my back issue. And had a minor repair surgery on my stitches that weren’t healing properly from the port insert.

I also told them the lump I found feels different now. Not bigger or smaller, but just different and wondered how we’d know if this shit is working. We decided to order an ultrasound to compare to my prior ones and see what’s going on. That will be March 23rd. Infusion #4 is on the March 24th. Looking forward to seeing what’s happening, personally. As Dr. F said, knowledge is power.

Had great visits with Michelle and Miss Jeanne today. Was nice company, made the time fly.

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Lots of good, healthy eats and drinks. Lots of laughs. Made an icky process so much more fun.

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Michelle brought her cupping implements. Tried them on Miss Jeanne. Cupping therapy is an ancient form of alternative medicine in which a local suction is created on the skin; practitioners believe this mobilizes blood flow in order to promote healing. Suction is created using heat (fire) or mechanical devices (hand or electrical pumps). (Wikipedia) Helped heal a pulled muscle in Jeanne’s neck.

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And upon my return? Flowers. Cards. Gifts. Fantastic.

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Special thank you shout outs to Cushing & Co for dinner tonight! And to our neighborhood friends – Lacks and Hiatts for the very generous gift cards to places we love. Rachel made beautiful thank you cards, you will each receive shortly. And so many encouraging words via text and fb messenger from people near and far. Thanks for all of your kind words and support. I am in very good spirits, thanks to all of you.

Feeling generous? Support Caleb!

As you know, we lost my mom to breast cancer, after her 20+ year battle. In her honor, and mine, my brother Caleb is running the Susan B. Komen race for the cure in Boston, April 9. Please consider making a donation to breast cancer research, and support his effort!

http://transaction.komenct.org/site/TR?px=1505384&pg=personal&fr_id=1310&et=kKO1vwcN76jgcX0E_SaLqQ#.VtbZQhgsksE

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Quick update

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I’m heading into round 3 – halfway through chemo!! Today I drop off my 24 hour urine sample, have my port accessed and blood drawn, so they’ll be less to do tomorrow. I start tomorrow at 8 a.m. with hopes we can fly through the doctors meeting and get right into the comfy seat and home by the time the kids get out of school. That’s the plan. I’ll report back.

Round 2 brought the same effects as the first. Longer time with the rash on my face. A little more tired. I pulled a muscle in back moving my pottery wheel, an unnecessary complication.

I’ve had great adventures these last 3 weeks including a massage party hosted by girlfriends, a trip to the Kohler spa in Burr Ridge courtesy of Billy, Reiki with Kory at her house and a weekend get away ’round the bottom of the lake with the same group of girls – lots of laughs, tears and love all the way around. Pottery club was kind enough to move my wheel into an enclosed garage studio – Urzula’s house studio – and we got together for a little Polish vodka and bowl throwing, which felt so great. I miss it. Hopefully now we can see each other regularly and I can keep up with the hobby. I’m still enjoying the Wellness House – have tried all of the healing energy classes, joined a palates class and a staying well exercise class with weights and cardio. Trying to get there 3 times a week if it agrees with my body.

Sending out thanks to PKV and the McKenna clan in AZ for the wonderful gift boxes that arrived this week. Susie sent a clever bamboo plant with twisted stems for good luck. Miss Marf is taking me to get tapped today – and Miss Jeanne is my partner in chemo tomorrow. Thank you!!

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Hello from the other side…

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I made it through round 2. One small scare in the wee hours of the morning Monday relating to dehydration and the ‘rea that brought it on, but otherwise, so far, I’m smooth sailing. This go round it was 2 days after they tapped me I felt ill. It lasted until Monday night. By Tuesday, it was like it never happened.

My girl Friday, Miss Jeanne, or “Flynn” as my dad calls her, saved my ass – literally – Monday morning with bananas, pita bread and applesauce. And brought Smart Water – which is basically water with electolytes to replace that hideous concoction they call Gatorade. Savior. I sent out the 911 to my band of misfits and they all responded instantly, devised a plan and I was cured. What the hell would we do without text messages and girlfriends? Honestly. I’d be hospitalized by now. Ocho para siempre!

Today, I made it to Wellness House for a walk with Liz and part of a pilates class (in which I busted the equipment, sorry) followed by a Healing Touch session. It’s like Reiki – but an Americanized version. More touching. Less chakras. Uses a pendulum. Was very nice. Not as powerful as the Reiki I had, but nice to relax regardless. The volunteer technician (in her 70s) is an 18 year survivor of bone marrow cancer – which sounded horrid to live through. But she did. And giving back is her healing power. Bless her. Her name is Linda. Go figure.

I’m down 27-30 pounds from my initial diagnosis. A little worrisome. To my defense, I have completely quit meat, dairy and sugar since then as well. (Still drinkin’ the vino, but it only tastes good the couple of days before the next treatment. Until then, I’m sorta metal mouth and not interested.) If I bounce back up a little tomorrow, I’ll let it go a little bit longer, but if it continues to slide, I’ll rope the pros back in. I do feel good. I worked out – for cryin’ out loud – I must feel good. Or I’ve lost my mind.

I finally made it through my thank you notes. I apologize for not doing it sooner, I thought there weren’t that many, until I surpassed 50 and realized we needed more stamps, more envelopes, and better system for keeping it together. THANK YOU. Every day has been a treat, a note, a text, a card, words of encouragement – even though there is nothing anyone can do or say to make this go away – I love hearing from everyone – and knowing I am never by myself in this, ever. It is heartwarming.

I made some fantastic recipes to share – though the soup sounds crazy – looks crazier – the taste is amazing. If you like Indian food, you’ll love it. I skip the dairy in everything, try coconut milk or similar where it calls for dairy.

Mediterranean Baked Sweet Potatoes


I used this sauce on the falafel, but then realized this recipe deserved a high-five, too.

http://www.yummly.com/recipe/external/Curried-Spinach-and-Potato-Soup-755370

Easy Vegan Falafel

Greek Salad Dressing

Thanks to cousin Sue for my kick-ass Valentine socks. Thank you to Mr & Mrs Kasey for a box of lovely treats with fruit, chocolates, cider – the kids LOVED. My long time friend and colleague CAS for a movie night package to please all the minions. Brilliant. And Miss June for showing up in my Monday moment of despair with a Van Gogh coloring book from the new exhibit at the Art Institute.

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HER+ 30+ years after my mom was diagnosed…

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My diagnosis is nearly 32 after my mother’s. Medicine has changed leaps and bounds, to be sure. Some things are still the same, but some things have become mini miracles. For instance, I receive a drug called Nuelesta (a white blood cell booster) 27 hours after my last chemo drip stops. They attach it to my arm, inject it, and I wear this little box around until the day after treatment, it beeps, depletes over 45 minutes, and turns green when it’s over. And I throw it in the trash. It used to be that patients had to go back in the next day to get a shot. Not all that long ago either. So convenient. I would have killed someone today if they made go back in.

I follow several breast cancer and cleaning eating blogs related to my diagnosis. This article came up today, and it’s really well done. I am HER2+. Only 20% of people are. It used to be the kiss of death. And in a study over the last 30 years they’ve found this gene type “deemed the enemy” and found ways to attack it specifically. I’m on Herceptin. And Pertuzumab. Both targeted treatments (non-chemo) for HER2+. Two key players in my #fuckcancer strategy.

http://www.gene.com/stories/her2/

I’m not saying its a good time to have cancer. But there seem to be a lot of positive things happening that are in my (and everyone else in my shoe’s) favor. I don’t know what kind of cancer my mom had. All I do know is that she was so brave. And so young. And she persevered with grace – lived life with such spirit. If she can do it, I can do it, too. Plus, these docs have 30 more years under their belts. Yay science!

Today’s special thanks goes out to Heather and Sue for these beautiful hand-dyed head scarfs that showed up today. Love them. And my neighbor Jenn sent over these sweet feet treats. Thank you.

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Ahhhhh… Poison…

IMG_7608We made it through the day. 9 am to 5:45 pm. Long delays. Long wait times. Plus I hadn’t eaten. Hangry Jeni isn’t a nice person. The doctor was an hour late, they doubled my blood draws, took two hits to get into (a very swollen) port, a scary allergic reaction to Taxotere (chemo) where I lit on fire, nearly puked, had trouble breathing and inhaled a huge shot of steroids to make it stop – which it did. Fortunately, my nurses were right on top of it, and I walked away with only a slight increase in anxiety, but the infusion increased in length because they had to give it to me half as fast. Finally, when she disengaged the needle from the port a clear/pink serum went swimming down my chest. That’s hot. Not my favorite day.

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Nurse C did have a great sense of humor and calm. She wrote “Jennifer Moore’s Chinese take-out- with an itemized list – on my 24-hour urine kit brown bag. She’s the bomb. My Oncologist worked with us to reschedule my treatment times, and gave me her super-secret-first-available-off-the-books appointment time of 8:40a – the very first of the day BEFORE the first appointment of the day, to avoid the train wreck we experienced today. In addition, we decided I’m going to have all my labs done the day before in Oak Park, when I drop the “Chinese Take Out” tub like a prom date. I’ll have the port tapped then, too. Basically, today’s problems will be solved. Bill says I was a bitch. Whatever. It won’t happen again, now. Nurse C also plans to double my benedryl intake before the chemo infusion, to avoid that scary allergic reaction in the future. We have a plan I love. Plus, by chemo time, I was defused – once I had something to eat.

The coming days… I expect the icky flu-like feeling to set in tomorrow night. It will last until possibly Monday night. A few days later the “‘rea” sets in, as Nurse C likes to call the runs. She gave me a prescription drug this time, to get a better handle on that (another problem solved). I could see the skin rash. I need be weary of fluid retention in my legs. I may see the neuropathy this go round in my hands and feet – takes some time to show up – some build up of poisons. I did end up having excessively watery eyes, for maybe 4 days, before I went in for round 2. I had none of these symptoms when I walked in today, but they could all reappear. “Brace yourself for impact” couldn’t be more true. Lots to experience in the coming days.

Two down. Four (with chemo) to go. Bring it.

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The plus side? My blood counts were excellent. The creatinine sample (24 hour urine collection) was in better shape than last time, which reduced the quantity of one of the drugs I’m on. I lost 17 pounds since my initial diagnosis. Bill brought me in, and his office gave him the whole day off to be with me. Michelle came for a few hours to the hospital and told great stories. I heard from loads and loads of my favorite people via text messages. Upon my arrival home, on my door step there was a mysterious bag of fantastic comfy-yet-fancy-chemo perfect lounge wear from Miss Marfa. I made it to my LAST recorder concert for Ray’s 3rd grade class (still hopped up on steroids) – which was outstanding – and, pleasantly, very short and grabbed a few hugs from good friends in the audience. Aunt Donna (Bill’s sister) is visiting from California and handled all the shuffling of people to their places and even took the monster truck in for a new muffler. You’re welcome Ridgewood. The roaring race car engine is no more. And, as though that were not enough, there was a meal fit for kings from the aunt-who’s-not-their-Aunt Susan. Smooch. Smooch. Smooch. Smooch. Smooch. Smooch.

All in all? It all went in and we came home to love, laughter and lots of lots of hugs. So many good humans in the world, its humbling to be among you all. Support for our family is everywhere. I am grateful. Thank you.

Thank you Sugarmans!
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Thank you Taylors!
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Thank you Miss Marfa!!! The Potter’s Pot tshirt! Brilliant.
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Harry loves me. Thanks Shelly.
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Exercise and appetite

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“You’ll feel better inside,” the front door says. Indeed, they are right. Today was my first exercise class at the Wellness House. Myself and 8 other survivors did 30 minutes of cardio, and 30 minutes of weight lifting, with good music, and lots of smiles and laughs – welcoming me with open arms. It was fantastic. They were very encouraging, commenting that they wished they had exercised during treatment, so they felt less depleted when it finished. And with that, I will go again on Wednesday. Classes are offered everyday, some drop in, some with registration. All free and all so helpful. Next week there is an evening course on managing aches and pains through exercise. And a course on reducing the effects of lymphedema – the swelling of your arms – which can happen with the removal of lymph nodes – something I will have to have done eventually. I’m going to try to make them both.

Super bowl Sunday brought the Mizwicki’s – also on a journey of clean eating – to our house for the game. We made Mexican quinoa – a family favorite – and pico de gallo, home made salsa, fajita style vegetables, shrimp and steak tacos and a cabbage salsa that were all fantastic. Links below to those recipes. Janet gave me some wonderful essential oils for my diffuser and roll ons that smell amazing. Was our first quiet Super Bowl in some years, but it was perfect, and such a nice treat to have them over.

I am feeling great. Took a long walk in the woods with “my girl friday,” Miss Jeanne on Saturday morning. We haven’t been able to see each other, as she’s been ill. With my immune system being pulverized by chemo, I can’t afford any extra germs. It can be a bit isolating, but Saturday was a treat. Breakfast at Prasino – our local farm, grass-fed, cage-free, cater to vegan restaurant was the icing on the cake. Thank you, Miss Flynn. Was a highlight.

The gestures of love and support are endless, I am so grateful. My niece and nephews sent awesome valentine drawings, my cousin-in-law sends notes and jokes regularly – thanks Annie, lip balm for my ridiculously continuous chapped lips – thanks Kory, a surprise bag of quesy pops from my friend Donna who runs past my house everyday – SMOOCH, and a pair of earrings from Katie – who also sent an unbelievable gift box early on – my college girls are going to be together this coming weekend and I can’t attend – so my goodies were sent here instead. This is the one biggest bummer in all this, I can’t always be with my people. But goodness, I never realized how many amazing, generous, loving, supportive people I surround myself with. I am humbled. My cup runneth over. Again, and again.

Enjoy:
Mexican Quinoa:

One Pan Mexican Quinoa

Shrimp with cabbage slaw:
http://relish.com/recipes/shrimp-tacos-2/?utm_source=relish-daily-dish&utm_campaign=2015-01-26&utm_medium=email

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A fond farewell

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Today, my lovely locks and I are parting ways. Day 13. Bittersweet. At least we know the chemo is working. Killing the fast growing cells. Thankfully, I have a beautiful basket of headgear, enough for something different for every day this month… and the next…

The doctor gave me an antibiotic ointment for the skin rash. It’s not gone, but it’s better. Less hot. No signs of peeling, yet.

I took Madison out of school early today, for her half day, and we spent the day together at the Art Institute. My pottery teacher, and good friend, Jean went with and we enjoyed the new galleries of the Modern Art wing, plotting and planning a return visit. It was a nice distraction.

Today’s gift was from Liz, who’s been so kind and generous, helping me navigate as a “survivor.” It’s the cool little black and white hat under my purple helmet. Thank you.

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Red in the face

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Reacting to taxotere (chemo drug). Hoping it cools off tomorrow. Firey, but not itching. Hoping it doesn’t peel. Otherwise, feeling great. Just borderline hideous.

On the bright side, my Aunties and Uncle sent a gift box of goodies from my aunt’s cheese shop in LA. Favorites from her employees – lots to savor. And two beautiful, and apropos bangles from Miss Marfa and SHE SHE. Thank you.

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Spoke too soon…

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I haven’t gotten away unscathed. I’ve had diarrhea for 24 hours. Very common. Completely treatable. Super, super, super annoying. And exhausting. Who knew? Bananas for all.

I took my bandages off today. It’s been a week since the surgery and first infusion. They sealed the incisions with glue, which is still on there. Everything looks pretty healthy to my untrained eye. Just a touch of sore. Where my finger is pointing – that’s the port entry. It’s just this tiny little circle pad, hidden under my skin, it’s a direct hit for drawing blood/receiving infusion. The upper incision is the vein they ported into. The long lower incision is where the slid the miracle box under my skin. We used it on the first infusion. I’ll probably have it for 2 years. Save my arm/hand/feet veins from distortion – I have horrible veins – which is why I opted for the port.

I’ve lost weight. With my diagnosis I changed my eating habits completely. Whole foods, clean eating. Almost completely plant based, though some seafood, broth and a few things I couldn’t control. I cooked / froze a bunch of soups. Have continued my juice creations for breakfast, though I’ve taken a break with the loose stool situation looming large. Beet juice with ginger, grapefruit, lemon, green apple, fist full of power greens and tumaric root is my go to. Try it. It’s wonderful.

Today brought another bounty of goodness to my doorstep. It made me cry. Kindness will cure all wounds. Thanks Aunt Kathy and TTT.

“Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future.”

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Back to life

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Basically, after 4 days of the flu-like non-existence, today, I am among the living. Worked, shopped, ran errands, picked up kids, cooked, baked, made deadlines and took a conference call – plus ate normally for the first time since last Wednesday. Round 1? Check.

I have a funny tingling sensation on my scalp. I googled it. Others have sensed it too. Could mean those fast growing hair cells are dying. I know the bald is coming. The anticipation is sorta nerve wracking. I’m pulling and tugging a bit like a mad woman. It’s an inevitable fate. I am compiling an arsenal of endless hats and skeins and skeins of yarn…

A (fucking) fantastic coloring book arrived today to add to my collection – special to thanks to my cousin Sue and my cousin-in-law-by-marriage-or-something-like-that Annie! Big swear words are FUN.

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Day Four

All and all the side effects haven’t been bad. A bit of indigestion, but very minor. Yesterday didn’t turn out quite how I had planned – I scaled way back – didn’t get to see my little monster Monty after all, turns out I needed a 3 hour nap instead. I suspect this is how it will continue, in waves of commitment and completion. Obviously only able to handle what we really feel we must.

I spent this morning with the fine folks at the Wellness Center in Hinsdale. I was able to find/get a wig from American Cancer Society, which is cute and will be very helpful. I’m more brown than gray – a pleasant reality. I took a facility tour after the fitting – exercise, reiki, massage, cooking, support and mental health courses are all available to me, and my support team. It’s a very cool place, very fortunate indeed to live so close. They offer some makeup and skin care classes I signed up for, and a series of cooking courses on embracing plant based diets that starts Thursday.

A little less of the metal taste today. A lot more ginger tea – someone sent a case of it via Amazon – THANK YOU. The homemade goodies have been wonderful – soups / fruit / sweets – all of the well wishes are overwhelming. We feel the positive energy all around us. Even the simple little text messages of encouragement – We’re grateful to have so many who care so much.

Sunday Funday

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Healing up nicely. Not feeling too bad. A little like the flu. Tired. Nothing unbearable. The metal taste is still present, but it’s minor. I’m eating. Upright. Knitting. Feel better than yesterday, probably helps that I slept 15 hours+.

Going to spend some time with my pottery peeps today getting a kiln prepped for greatness and I’m thinking Shelly and Monty are coming to make tom ka kai a little later. Plus special guests Aunt Donna and Uncle Bill and BIG cousin Dave are visiting for a few days too. If there were more hours in my days I’d be sneaking Kory’s reiki in today too, but alas, I think it has to wait until another less full day.

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The (first) morning after

Shaky. Thirsty. Sore.

But up and around. Ice pack on. Trying to satisfy the quench.

Weird metal taste – check.

Made chia pudding with frozen berries – hit the spot.

I’m told the effects will rear their ugly head later today or tomorrow and last only a few days. I have a patch injection on my arm for nuelasta – a white blood cell booster – that should inject around 4pm today – right about the time I feel the impact of the chemo drugs.

All in all it’s a good day so far. Glad to be starting. 1 down. 5 to go.

My family/sisters/cousins/friends in Menominee sent these to me today – and then pictures of theirs they are wearing and their kids are wearing. LOVE IT. Grateful. Thank you.

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Curing concoctions

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Home and happy. Bill and I were in for only 3.5 hours today, just for the chemo treatment and a few precautions – benedryl, antacid and something else for nausea. We had a little fun with some of the clever distractions sent our way, to pass the time.

The incision site and port insertion wounds look fantastic. Though more visible than I thought it would be, it’s very close to the skin surface, a low dome, and just a tad sore. So much better than with all that tape everywhere. Ice is keeping the pain at bay. The port is under the bandaid. The white bandages are the insertion site and vein site.

While we drove away I was barely able to keep my eyes open. After a solid two hour nap, I woke with insatiable thirst – normal I’m told – cracked open a mango and a tall glass of water and that did the trick. The kids picked out some hard candies for me, and a beautiful bouquet to brighten and lighten the air.

Now I only have to manage the side affects until the next infusion date – Feb. 11th – for which I have an arsenal for everything from cracked lips to bed spins. Likely tomorrow night I will feel the effects, which are slightly delayed. And the worst of it should be over in a couple of days, giving me plenty of time to rebuild, get stronger, make new blood cells over the next 3 weeks. Somewhere between now and my second date with the devil, I will lose my hair. All of my hair. Everywhere. On. My. Body.

Breath in. Breath out.

It is such a relief to finally be here. Nearly 2 months from the day I found the lump, but well on my way to a better place – and everyone / everything is falling nicely into place.

Grateful. So very grateful.
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Port and Treat(ment)

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I arrived early, had some blood drawn, and the prepped for the port-insertion surgery. I was out (asleep) in seconds, don’t remember anything from the oxygen insertion until they woke me up.

The 1 hour surgery ended up being 2.5 hours, because as the Dr. said, my vascular ultrasound turned out to be false advertising and they had to go with a work around through my neck vein. I was up right away afterward – with the good news that the chemo drugs had been approved by insurance and we were off to the races.

The bad news is that I got to the chemo suite too late to start chemo itself. My treatment contains two non-chemos we did today, I have to come back tomorrow for the toxic shit.

My regime is: Taxetere and Carboplatin for chemo and Herceptin and Pertuzumab (Perjeta) for the HER+ receptor targeted attack. Plus there are all those other drugs I need for any and all side effects, which vary widely and don’t happen to all.

So, after tomorrow’s infusion I should feel the effects, they say, sometime Friday night. We shall see. I’ll be hard pressed to feel anything with the kit of cocktails they are sending me home with. Susan brought me down today (THANK YOU). Bill met me after the surgery and stayed with me for lunch and Michelle came to relieve Bill and bring me back to beautiful Western Springs.

So far, so good, for this first day of adventures. Feeling loved. And for that, grateful.

FYI: in lieu of explaining the Stage II vs IIIa here’s what they gave me, that’s all I’ve got.
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Prep work for game time

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A long day.

Blood work, kidney test, vascular ultrasound, ECHO cardio gram, port-a-cath surgery prep meeting and chemo class with new binder.

Exhausting. Only new news is they upgraded (???) my tumor to Stage 3(A). I’ll explain later.

Have all the prescriptions in hand and will be enroute to the port surgery in the early morning. Then whisked off to chemo for the balance of the day.

Here’s to steady hands, curing concoctions and subtle side affects, friends.

Bracing for impact.

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The big meet

Long day today, but here’s what we now know. I have Invasive Ductal Carcinoma, Stage 2. There is a 5 cm mass in my right breast, with several affect lymph nodes both in and outside my breast tissue. I am ER/PR/HER2+ (Triple positive) The triple positive receptors are good news, in that all of these receptors have targeted (proven) treatments available.

I will have pre-treatment meetings/tests Tuesday next week at Rush. I am having a port put in my left chest/shoulder and will start chemo next Wednesday.

I will have one year of treatment with 6 rounds of 2 kinds of chemo plus 2 other medicines over the first 18 weeks. Then surgery (TBD what that is, lumpectomy or mastectomy or dbl mastectomy) sometime in June. Then continue 2 of the cocktails / non-chemo-shit for the rest of the year.

Bill and Brian Moore were with me for the meetings.

The reality that the next year of my life is in someone else’s hands became very real today.

All in all, I have positive feelings, like the team of experts and am ready to get started.
Plus, there’s wine. Lots and lots of wine.

#fuckcancer

Initial diagnosis

Biopsy results in: Invasive Ductal Carcinoma, Stage 2
Plain vanilla. Everyday. Common. Seen it a million times. IDC with some node action.
I got what I asked for.
More to come after meetings Wednesday afternoon with surgeon, oncologist, genetics counselor.

January 6, 2016

All the insurance is cleared up, sparkling new and ACCEPTED at Rush. Today was the MRI and biopsy to seek the primary source of the cancer. We ruled out that it was anywhere other than the breast with the CT and Bone scans. So now the MRI will give us a more detailed picture of what is inside me. They’ll use this to core biopsy the mystery grey space that Dr. F went after, but came up benign. They took 7 or 8 samples of the 5 cm mass they found on the MRI. They also sampled a lymph node outside of the breast tissue to make certain nothing moved out of the breast area. They left another tag in the spot they sampled, Dr. F also left one behind. So now we’ll know where everyone’s been.

And, again, we wait. We’re hoping they got something, so we can name it, figure out what kills it, mix that cocktail up and get on with this circus act.

We are meeting with my team of doctors on the 13th to determine the path of treatment, and next steps. We’ll also talk to a genetics counselor, Kelly, on the CHEK2 gene mutation I carry (I got results back before the new year – No BRCA 1/2 but yes to CHEK2 – google it). They’ll also show us the MRI and explain what they saw, etc. I missed the radiologist who read my MRI when I was in the biopsy suite, and didn’t get a chance to see what that looked liked. I want to see it. Though I do have a fine collection of CDs of my insides, should anyone be interested.

Results are due on Monday. More waiting.

Here’s hoping it’s plain vanilla. Hoping to start treatment soon.

December 26, 2015

Today we told the kids.

All together, in the living room, it was time to rip the bandaid off. I cried. They listened. Ray looked up from under my arm and blew me a kiss. Not very many questions. Lots of hugs. A few jokes.

All the “weird” shit that had been showing up at the house now made sense. The friends dropping in for hugs, leaving boxes not wrapped. The essential oil diffuser. The crystals. The cookbooks. The kale. The big bag of fun that Shelly dropped off when they weren’t home. The new purple binder.

They are amazing. I’ve always known they were good kids. But they are truly amazing people. HUGE relief for me. Too heavy a burden to keep inside.

December 23, 2015

Madison is playing at Mother McCauley in a tournament. We head south in a rain storm.

During half time I have a nice talk with Dr. M (surgeon) about what can be expected in the coming days. She’s on vacation, but wanted to me to know that we’re still waiting on the genetics test, and that they will reach out to the CT/Bone scan place for results and let me know. Another good egg. Good humans are flowing my direction.

On our way home from the tournament (THEY WON!) in a torrential rain storm Nurse Megan calls with the results. Clean scans. No sign of anything, anywhere.

Best. Possible. News.

My dad looks relieved. I feel elated.

Now lets hope for some plain vanilla, everyday common, every third woman has it breast cancer. That would be icing on the cake.

December 22, 2015

After a bunch of back and forth, changing insurance and long wait times, I decide to get the CT and Bone scan done off site with my existing insurance. My dad is coming to town to fly out to see Caleb, so he can take me up to Des Plains for the tests.

The CT scan is fine, flat bed, big tube, lasts only a few minutes.

Dad and I find a fantastic Greek restaurant on Golf Road – Omega – and eat big. We have an hour between scans.

The Bone scanner looks like a human panini press. Not as much fun. The technician, Maria, is great. Has 3 kids too, same ages as ours. She’s making Pernil for Chrismas eve – my dad’s favorite – a Puerto Rican pork leg – we talk about our nanny Marta and her Puerto Rican rice dish with the peas – this lady is half Mexican and Puerto Rican so her palate is fantastic. By the last minutes of the test, with tears streaming down my face – talking about my kids and Christmas – holy shit get me out of this contraption – she’s hugging me and praying.

Human beings sure are amazing. She was a life saver.

We leave and I’m a bit confused about what happens next. Leave word with Nurse Megan. Go home. Open wine.

December 10, 2015

Michelle and I meet with Dr. M (surgeon) at Rush University Medical Center on Wednesday. She’s petite, direct and vivacious. I like her. This is the gal Dr. F wants me to see. “She’s cool, you’ll dig her.” He’s right. Feels right. The room is purple. A good sign.

Turns out my insurance sucks, and they won’t accept it. They offer me a counselor to help navigate insurance. We make a game plan for needed tests – CT and Bone scans, blood work for kidneys and liver. Michelle takes notes. I get naked, they do another exam. Yep. Lump. Still there. Damn.

I’ll have a nurse, Megan, throughout my journey, for questions.

We leave feeling good. Hungry. Lunch time. Jeanne said Honey something Cafe. It’s perfect. Shelly brought games to play and we lose focus in learning something new.

December 6, 2015

I’ve never been more exhausted in my lifetime.
I sleep nearly all day. Completely deplete of energy.
By 9pm I realize my phone has died.
A call from Northbrook. Left a message. It’s Dr. F on his cell phone.

I text him.

“It’s me. Is it too late to talk to you?”
“Give me two minutes. I’ll call you.” His response is immediate.

I go into our closet upstairs, where all the most important phone calls are had.

“Jeni. The lymph node cells are malignant. Consistent with breast cancer primary. The second area I sampled is benign, but I think I missed it. There is something else going on. You need to call a surgeon. I have one for you. First thing Monday. I am sorry to give you this news.”

Fuck. I call my dad, “Fuck.”
And so it begins.

#fuckcancer

December 5, 2015

8 a.m. is early.

He uses a novicane to numb the area and does an needle aspiration of the lymph node. Other than a bit of shaking (by him) it goes smoothly.

The core biopsy uses an air gun needle type thing. Dr. F neglects to tell me there will be a shooting sound when it retracts. I nearly bit him when it went off. We stop for a second so I can catch my breath and scold him for leaving that detail out of the prep work. When we continue he shares with me what he’s seeing, trying, sampling, leaving a marker, and it’s over.

Turns out his best friend is a pathologist. Will have answers over the weekend.

Answers.

Finally.

December 4, 2015

Dr. F’s office is very nice. Behind Bloomingdales building / 900 North Michigan. Bill goes with me. The technician is awesome. Kind and gentle. We go through the mammogram, take some extra pictures of some concerning areas then head into the ultrasound room. Normal office room, with ultrasound equipment, like when you are having a baby, same deal. This technician takes a bunch of photos then calls the big guy in. He spends 45 minutes with me. Back and forth, up and down, both sides, back to the spot I found. He’s concerned. Get dressed. Get your husband. Let’s meet in my office.

He thinks we should biopsy two sites. The lymph node that I found and some place right below it, where light won’t pass through the site. Looks like a grey blob. But every other spot lets light all the way through. This is casting shadow, and he’s using the word “troublesome.”

“Be here at 8 a.m. tomorrow.”

December 3, 2015

Today I met with my primary doc. He thinks it’s a fatty cyst, but suggests we rule out anything else. Northwestern can’t slide me in a timely manner, so he’s sending me to someone outside the Northwestern system. Dr. F (Radiologist) will see me first thing tomorrow morning for a mammogram and ultrasound. Dr. P (primary doc) makes an appointment with a surgeon, too, for next week, to read the reports from the mammogram. Wishes me well, no worrying. We’ll talk next week.

black friday

Still feel it. Rooting around to see if other areas feel the same. When was my last breast exam? When was the last mammogram. A lot has happened this year. Did that happen? Is that really a lump? Or is it a bump? Is something? It’s not a frozen pea. It’s super annoying. Fuck. What do I do. Arm up over my head. Hand in my shirt, under my bra – my new position of choice for the next week.

We gather the troops, eat a big eggs and bacon breakfast with PaPaPa and Butz and Kase, and then head home to Chicago for Madison’s tournament game. We get home at 11. 11:10 I pull Bill up the stairs and into the bedroom, “I need to talk to you.”

I sit on his side of the bed, turn to face him, and well up. “I found a lump.” Ugh.

I assume the position, arm dangling over my head, and he dives in to root around. Yep. He feels it too. “Now what?”

Bill calls the doctor. Dr. Primary thinks we should rule out and infection. Go see an immediate care place and have them take a look/feel/assessment. Seems reasonable. Bill agrees. We should do that. There’s a small window of time between this moment of clarity and Madison’s tournament game. So, I go see Susan. She’s got a table I might want, need to check it out in person. She can feel it and tell me I’m nuts. Hopefully she’s alone. She texts back, “Yes, alone. Workman at the house. I’m at Chick fil A, come in 15 minutes.”

I drive over to her new house, grab her hand, lead her to her bathroom and plunge it in. “Yep. I feel it.” Susan is no-bullshit. We need a plan. What should we do. I tell her of our plans to see our primary, she says her schedules free to take me, if I need it. We hug. I make her check again. Yep. There.

After the game Bill and I head over the Loyola Immediate Care. I’m teary. Nervous. Streaming out my eyes nervous. They get us in within minutes. I’m naked on the table within 20. The young doctor comes in and does a breast exam. He’s not sure what he’s looking for. We don’t give details. Lump in breast. Have at it. Doesn’t take long for him to figure it out, too. He’s frank. No idea. Need diagnostic mammogram. Get on it right away.

What now. We call our primary back, tell him what the dude said. We get a Wednesday appointment at Northwestern. So, a few days of waiting. More arm over the head, fondle the right breast action. And, waiting.

No more, where are you going?

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