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...

Read More

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;...

Read More

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...

Read More

PET Results

Sep 25

I have new PET scan results.  It shows no new cancer spots, but all the cancer spots in my chest are slightly larger and slightly more active than they were at my last scan last quarter.  Progression stinks. It means we’re switching drugs again because the Carboplatin and Herceptin are not doing the job.  I will start Ibrance and Faslodex.  I continue to be blessed in that my cancer is not growing by leaps and bounds.  Millimeter increases are acceptable in the short term, but still not good for the long term.  It’s not my style to waste time on worry and what-ifs, so I won’t.  I’ll be praying that the new drugs are my miracle drugs that beat the cancer down significantly. Dr. Wonderful is on the cutting edge of medical knowledge and treatments, and is being creative to give me every medical advantage he can.  I’m grateful: every question and thought that I had today he had already considered and evaluated.  He rocks. Neither of my new drugs are technically chemotherapy drugs; it’s the first time in more than two years that I won’t be getting a chemo drug (I’ve had a half-dozen or more in a row).  Instead, Ibrance is a targeted therapy drug: it targets specific pathways to stop the cancer growing, and Faslodex inhibits the hormone pathways.  A silver lining is definitely that I might start to feel better, as my body won’t be absorbing poison every week. I appreciate your prayers and support more than you know!  Thank you for engaging in my story. Please keep my children in mind as you read and share my news: our hope is that Maren and Greta can talk about me and my cancer only if and when they want to share.  Maren has a support network of adults and Greta’s is evolving as she ages into it.  If you and/or your children see my children, please make our wishes a part of your parenting conversations if you are sharing the news with them.  The emotional challenge is hard for the girls and we need your help.  Thank you for protecting them with...

Read More

Random catch up

Sep 20

I haven’t written a lot lately… I’ve been really prioritizing being p.r.e.s.e.n.t. in the space I’m in.  Summer, with the girls home all day, was wonderful. I titled this post random catch up, because that’s what it is.  Almost every snippet could be a longer story, but ‘random catch up’ is feeling like the right thing for tonight.  I don’t have any news or updates to share. Now the girls are in school and I’m filling in my days with ease.  As my mom would say, I’ve always enjoyed the pleasure of my own company.  And as my dad would say, I (we) work hard and play hard. I’ve started on Halloween costumes (a happy heart project for me).  I’ve cleaned out a few corners of clutter.  I’ve had coffee and lunches with a few people, and have a long list of more connections I’d like to make.  I’ve read some books.  I take naps. After a summer break, I re-started asking helpers to come on Mondays while I’m at chemo.  Generally, I leave a list and whomever comes also does whatever they see that needs doing.  It’s amusing to see what projects they take on.  Opening a cleaned and organized “junk drawer” leaves one with both the thrill and the horror that someone has organized my junk drawer.  It is the simultaneous joy of twenty-four inches of removed chaos, and the embarrassment that my chaos is exposed.  (The joy always wins for me!)  I asked this weeks cleaner to peel and chop my mix of sweet potatoes and russet potatoes for dinner, and they found and identified an errant rutabaga that I’d inadvertently purchased.  (I am not a chef; I don’t have the first clue how to prepare rutabaga.)  Rutabaga is not going on my list of favorite veggies, however I very much appreciate the laughter that we shared together. Maren learned her first hairstyle and — no bun or ponytail for her — she does the most darling pair of dutch french braids that you ever did see.  She braided her own hair for picture day this year, and she wore a shirt I bought her from the *junior department*.  She’s such a wonderful person to be around....

Read More