Cold and memories, old and new

Oct 30

There was much high-fiving on my behalf in the chemo room today.  It is a relief to be on the the treatment my doctor recommends, and — even as I type that — surreal that such a thing could even be in question.  I/We are continuing to work on making contacts and getting advice about what next steps should look like for me. At the same time, there are always emotions running high: one friend was having a tough day and that is always real and hard, one new friend was there and she’s only twenty-seven years old, and one friend I’ve known since my beginning is nearing eleven years stable.  And then there was also my buddy who always falls asleep and snores loudly — haha! We found out that my white blood cell count was low, and I need to delay the start of my next round of Ibrance (oral pills) by a day or a few days so that my counts can rebound.  Please pray that my counts rebound by Wednesday when I go in for a CBC check!  While I was in the office today I got my infusion of Herceptin through my port, and my Faslodex shots in my derriere.  I continue to feel relatively good on this combo, so there is much to be grateful for.  With my low white blood cell count, I’m immuno-compromised, so I need to be laying low and limiting exposure to crowds and sick people.  And — of course — I have a sick kid home today, so good luck to me on avoiding the germs. Halloween is tomorrow, and in true Ohio fashion, the weather is looking less than ideal (COLD, for you non-locals).  I need to write a letter to Ohio about the merit of sixty-degrees-and-sunny weather.  It’s called autumn, Ohio!  I think we’re in our fifth consecutive year of miserable Halloween weather. Maren is trying out for volleyball teams this week: the January to June season is decided this last week in October/first week in November.  She is driving what she wants to do, so I feel good that she’s goal-setting and chasing on her own.  Tryouts, I have confirmed, stink!  It’s hard to be told you’re not...

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Phew!

Oct 23

Late this afternoon, I got a call from one of my favorite oncology nurses.  She has spent at least as many hours as I have (if not more) trying to find some avenue to get me Ibrance over the past few weeks.  “Jen Anderson,” she said.  “Do you know you have good news?” “No,” I said, as I stood in my bedroom, mid-laundry-folding enterprise, and raised a celebratory fist in the air, not yet sure what I am celebrating.  “I do NOT know I have good news.  Tell me, tell me, tell me!” “Pfizer has approved your case; you are being granted the use of Ibrance at least until the end of the year, and maybe part of next year as well!” I did a little jig in my bedroom.  This is such great news.  I, as a part-time stay-at-home-mom and part-time cancer patient, feel like I just got a $120,000/year raise.  It is such a relief that I don’t have to burden our household with a $10,000/month cost for a drug.  Pause for a moment and imagine that yourself: you’re asked to absorb a $10,000/month bill into your household.  Then imagine the relief that comes with the not. Do you want to sink to the floor and cry with relief?  Because I do. I called my little sister first because she’s off in the Caribbean, working on a cruise ship, and about to be out of cell phone range.  She burst into tears, the happy kind.  In my circumstances, I have to make terrible phone calls a lot (cancer progression), so it is exceptionally wonderful to get to make a phone call that causes someone to cry happy tears.  Thank you, Baby Sister.  And, thank you Pfizer. Let’s talk about Pfizer for a moment, because they are the hero of the day.  Years ago, this mega-corporation invested resources in coming up with a new cancer drug for my population (the metastatic population — the ones who are technically not curable), which is a wonderful thing all by itself.  Now, they have also granted me free compassionate use of Ibrance: it’s not FDA approved for my exact type of cancer, but it is Dr. Wonderful’s best recommendation for what I should...

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My loves

Oct 20

On Monday morning when I started my car and drove to my oncology appointment, I saw that my gas tank was full.  I smiled to myself: Brad and I had switched cars for the weekend.  I was off with my sister for hiking and recharging, and he was SuperDad and house project guy at home.  I stopped at the gas station at nine-thirty at night on my way home so that his car would be full when he began his Monday commute.  He, at some point on Sunday, filled up my car for me.  The little kindnesses, the eyes that smile when he looks at me, the tenderness of his touch, the ease, the grace, the little things: these are the things our marriage thrives on.  I swoon.   This morning Greta, wearing her one-piece fleece pajamas with the unicorn hood, climbed into bed with me. “I don’t feel good,” she said in a croaky voice.  ::Fake sniff:: “Oh really?” I said, as I reached my hand to feel her cool, not-even-remotely-feverish forehead. ::Fake cough.:: “Yes, I just don’t think I can go to school,” she bats her eyes at me in a pitiful way and makes a sad face. “Hmmmm.  That would be too bad.  Your friends and your teacher will miss you,” I said. “If you are that sick, we better tuck you back into your bed so you can rest and sleep and get better.” “Is that all I can do?” she says with more coughing and sniffling.  “I don’t think being in bed will make me feel better.” “Yep.  You can sip ice water, and read books quietly if you can’t sleep,” I told her solemnly.  “If your body is sick, we need to let it heal.” “What about if I go down to the basement and watch a movie?” she said hopefully. “Nopity nope,” I said.  “Bed.” She popped up, “Wait–I think I’m healthy enough for school!  I feel better!” “Wow!  A miracle healing!  This is your lucky day Greta!” “Yeah!  I’m going to go get dressed now Mom!” she bursts up out of bed and I hear her closet doors fling open. “Okay G!” I laughed as I got up and went to...

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Minutiae

Oct 18

I’ve just finished writing a letter to begin an appeal wherein I’m asking for compassionate use of Ibrance.  Our insurance has denied Ibrance initially, denied it again on appeal, and an external review is our last option to pursue there.  Separately from that process, I’m working with Pfizer (the company who developed Ibrance): we don’t qualify for their automatic assistance program, so I am appealing that, too.  I’m also pursuing a consult with a doctor in Indiana who has gotten this drug combination approved for a patient I know.  Last, I am working with my insurance company’s nurse to see if she can leverage influence to any of this.  Lord, I seriously pray that one of these will pan out! Paperwork, phone calls, meetings, extra trips to the oncology office, appointments: it’s all I’ve been doing this week.  It’s mentally exhausting and physically time-consuming.  I’m really trying to not stress about this and to keep my worry tempered, however I also acknowledge that the stakes here are big.  Obviously, it is much harder to not think about cancer while simultaneously managing the endless minutiae to seek approval from someone — anyone!  Last night — after volleyball, after gymnastics — Brad and I spent an hour gathering documentation to try to support our claim that we can’t afford this medication.  It is sad to me that’s how we spent our hour alone together.  I find myself questioning the process, but I am forced to plod through the hoops as they are set. On a positive note, I’ve had a significant number of people reach out to me via message asking for updates on the Ibrance situation.  It is humbling to me and speaks so much love to my heart that people who love me are out there wondering about my insurance woe.  There are about a billion things I would rather be thinking about and I am the one who is super invested in getting a positive result!  Thank you for thinking of us. Due to the fact that Pfizer has a voucher program (established so that patients like me can start the drug in a timely manner while the insurance/payment cogs turn), I’ve been taking Ibrance pills for two weeks;...

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Mornings and procrastinating and matching

Oct 09

Last week I was sick for a week.  I had a cold/cough/fever/energy thing that left me in bed for a few days and bedraggled for a few more.  It’s so very ironic that I caught this bug when on my longest break from chemotherapy in more than two years.  In theory, my immune system should have been peaking in strength.  I liken it to people who get let down headaches on the first day of vacation: I subconsciously stopped willing my body to be healthy in spite of itself, and thus it crashed. The hardest part of that week was processing my scan with Maren.  “What if your small tumors get bigger and bigger and bigger and then your organ(s) don’t work any more and you die?” was her question.  Other kids ask, “Are there monsters under my bed?” and the parent gets to shine the light under the bed: no monsters!  I hate, hate, hate not being able to shine the light on our monster, that it won’t ever go away, and that she has to live with her monster. After a few days of operating as less-than-stellar due to the sickness, I woke up ready for the morning routines. I went into my bathroom, and laughed as Greta came charging in: “MOM.  Are you making the lunches right now?” Seeing as I’m standing at my bathroom counter brushing my teeth, I shook my head, No, I am not making the lunches right now. Greta, “PHEW!  OKAY!  Maren and I are making the lunches, so don’t do that.”  She whirls off again, “MAREN!  DON’T FREAK OUT!  I STOPPED MOM FROM MAKING THE LUNCHES.” There is never a dull moment with Greta around. I emerged from my room, and saw them in their bathroom together.  Maren gives me a smile, and says, “Morning!  We’re doing matching sister day: half buns in our hair, and matching sister shirts.” Greta, “AND THEN WE’RE GOING TO MAKE THE LUNCHES!” “I love it,” I said, grinning.  “You guys are rocking this morning.  Thank you so much!” We really like our mornings.  The two school buses come just before and just after nine o’clock, so it is a relatively late start to the day.  This...

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