Tag Archives: ofatumumab

the last Mother’s Day

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mom and her mild mimosa

 

I was in Houston yesterday for about an hour, on a layover from Tucson to Miami for a research protocol meeting.  I was in Houston this time a year ago, following my mother’s first cycle of salvage chemo, for Mother’s Day.  Time in an airport hardly counts, but it felt familiar; out my little airplane window was the same flat expanse of land, the strangely even tree line (as if the trees got together and reached consensus to which height they would collectively reach), and the billowing cloud cover. 

Mother’s Day 2012 is looming, and my ability to deny the existence of this holiday is waning.  I wish I could embrace memories of years past, but I seem to remember nothing before Mother’s Day 2011.  I have fuzzy recollections of Sunday brunches, of rushing to find a card or order flowers.   Most are lost to me now.  I think it always seemed like a “Hallmark Holiday.”

Last year was the first time I saw her really sick.  B-Cell Lymphoma patients often get blasted with a five-drug combination regimen, and Mom sailed through that regimen with very minimal side effects. Naturally beautiful, she looked positively radiant when it was confirmed that her lymphoma was still growing, that she had not achieved a remission with the very aggressive initial therapy.  “I just feel so good!” was her mantra, all the way to MD Anderson Cancer Center where she participated in a clinical trial.

It was at the end of this first cycle of second-line treatment when I rushed into her hospital room in Houston Texas in May, 2011.  Who I saw there didn’t look like my mother.  She looked like the hundreds of cancer patients I had taken care of in the hospital, swollen, slumped over in bed, attached to an IV pole loaded with bags and tubes.  She was wearing oxygen. 

“Mom!”

She woke from her doze, flashed the lovely smile that would stay with her right until then end.  “Hi sweetie.”

She was nauseated and had diarrhea.  Always the optimist, she would squeal “I think I’m shitting out my lymphoma!” Still, she perked up and she was discharged on time from the hospital a few days later, in plenty of time to celebrate Mother’s Day.

We filled the Houston apartment with flowers, and I bought her bright pink loungewear that somehow made her look young, almost like a teenager.  I gave her a journal I had started with some of my favorite memories we had shared, what I loved the most about her.

“Please write to me too!”  I entreated. I knew the odds were against that we’d share many more Mother’s Days, although I also didn’t anticipate she’d be headed to hospice a mere 6 months down the road. Whether or not she was cured, I wanted to hang on to everything. I wanted to be able to run my fingers over the paper she touched, see her handwriting, memorialize what we shared, fill in the blanks of any forgotten detail.

“Of course!” She was always polite and agreeable.  But she never wrote a single word in that journal.

We made plans to go out to lunch at a café near the Woodlands, a rather-contrived shopping and residential development north of Houston.   It was busy there.  My mom was tired after the car ride, and Grandma was cranky.  There was a loud, bustling energy in the place which didn’t quite fit with our weary and stressed out group, but we did find a table and sat down. 

“You should have a mimosa!” I encouraged. This was a special day, her special day.  Nevermind she had just been blasted with 4 days of chemo and had constant low grade nausea.  That should step aside for what was suddenly an important holiday, right?

I ordered her one, and to her it tasted awful.  I made the bartender re-mix the drink (“you need to make it very mild” I ordered with a snotty tone). Still, things were different now, and she couldn’t enjoy what she used to, even if it was very mild. She was tired, she was diminished.  Between the toxicities of treatment and the fact that her cancer incessantly marched forward after only a brief stumble from the onslaught of chemo, lymphoma was starting to get the best of her.  Mother’s Day was before the series of terrible setbacks that defined the summer, before we knew just how resistant her cancer was, how hopeless the search for a cure would be.  But it was when I perceived the slow fade that I hoped was simply chemo side effects (“she’ll bounce back for sure, right?”). It actually was the quiet, whispery beginning of the end.

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pictures speak volumes

My mom had a CT scan today.  This scan is one of the most important she has had to date.  If these images demonstrates that she is in remission, full steam ahead to transplant.  If not?  I don’t know, but it probably doesn’t involve curing her disease.   Months of waiting and planning, weeks of chemo, nights of diarrhea, hours of nausea.  They all come down to some pictures, shades of grey on a computer screen. 

A picture says so much, and its remarkable that with x-ray technology we can see her lymphoma, that slippery, sneaky moving target.  Of course, millions and millions of cells are needed to clog up a single enlarged lymph node.  The kind you can notice on physical exam.  But with CT scans, we catch sight of her disease in more subtle infiltrates and diffuse enlargements.  In a PET CT, we give my mom radioactive sugar, and watch the cancer feast (or not!).  Cancer hides and eludes, but we can hunt it, drive it out of the shadows and on to  our computer monitors. 

My mom’s disease is mostly deep in her abdomen.  There is no conveniently located bump on the neck or in the groin to feel, so this upcoming scan is our first chance to see if ICE + ofatumumab is working.  Of course, I believe she is gettng a benefit. She sounds bright, happy, and more like herself. 

It has to work.

hope in a bag

Mom has started her first cycle of salvage chemotherapy.  Salvage– it sounds desperate, and she hates the word, but that’s what it is.  It alludes to dwindling options, the scramble for a cure, a prayer for deliverance after a long, cold night. 

There are a number of acronyms for the treatment formulations, and in contrast to “salvage”, which is just a bit too honest, these sound mysterious and sexy.  ICE. HyperCVAD. DHAP. ESHAP.  Mom is getting ICE, plus a new biologic agent, ofatumamab– now that’s a real mouthful.  Four drugs, infused over four days. 

I won’t be with her until Monday, and its been driving me crazy that my mother is recieving this toxic cocktail while I’m over 1000 miles away.  Yesterday, the nurse that started up this treatment cycle was one of those tired out types that just don’t get it– no, I wasn’t there, but I heard enough second hand to recognize what was going on immediately.  Lecturing my mom to relax when she was in pain.  Discouraging my mother from taking more narcotics since it would involve calling a doctor. Nurses, we can be your best friend or your worst enemy.  She’s lucky I wasn’t there– I’d give her a taste of “worst enemy.”

I’ve been an inpatient oncology nurse- I’ve hung bags of ICE, in between antibiotics, blood and everything else under the sun.  Yes, its too difficult to take in the gravity of every story, in every bed, shift after shift after shift. BUT no, its not too difficult to smile with compassion, and attempt to get patient whatever he or she needs to make her comfortable.  Or if it is, its time to leave nursing.