Tag Archives: chemotherapy

My mom has had a partial response to treatment.  Her lymph nodes are smaller than before. We don’t yet know if its working a little, meaning there is still a lot of cancer left in her lymph nodes, or working completely, and the nodes are full of dead stuff and scar tissue.  The positive is that, be it modest or dramatic, a response is still a response. She is going to head to the hospital for round 3 of chemotherapy tomorrow, provided her blood counts have recovered.  A few weeks after her discharge, we will have a PET CT which might better help illuminate whether or not she is in remission.

I could be buoyed with hope.  Mom is looking well.  This treatment might be her magic ticket. Some other folks with refractory lymphoma don’t even get a partial response.  But actually, I’ve been feeling pissed off and anxoius.  I’m angry my mom has lymphoma.  We’ve been chipping away at this disease for a year; she still is not in remission. I hate sitting around in the stem cell clinic, regretting that for all the crap I talked about in therapy, I never got around to discussing my job as a bone marrow transplant nurse.  The doctors fill my ears with “she’s a perfect candidate! She’s so strong and healthy.” It all feels hollow to me.  Of course she’s a perfect candidate, healthy, has a “good” kind of lymphoma, blah blah blah.  Please get her in a f$%*#&g remission and then we’ll open the champagne.

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.

its just a phone, but…

 

I lost my iPhone today, en route to Houston.  Well, I think I lost it.  I last saw it in the Phoenix International Airport and it wasn’t in by bag when my plan landed in Texas. Damn. Lost or stolen, the phone is gone.

It sounds really whiny to complain about a missing phone right now, probably because it is.  Even I have enough self awareness to notice that.  Yep, I’m constantly on the iphone– it might be one of the yuppiest things about me.  Even though many others have cooled in their devotion (tempered perhaps by the fact that everyone else under the sun has one now, too), I’m still pretty noisy about how much I love my phone.  So to lose it? Especially now? Seriously?  My mom is sick from her chemo, I’m distracted with worry, then this– the crappy icing on a shit peice of cake. 

Anyway, the good news is, I’ll get a new phone, but not until May 6th.  That’s when the hubby is eligible for an upgrade (which actually means a replacement, but who’s getting hung up on the specifics?).  I can then apply his “upgrade” to my phone, and hopefully I synched before I downloaded all that awesome music and it will be restored to me through the magic of the digital era- but probably not. 

The even better news is Mom is feeling much improved from earlier today.  I spent some time with her in the hospital at MD Anderson before she went to bed, and she’s about 100% better from just 4 hours ago.  The nurses and doctors are taking great care of her, and she’s going to beat this thing.  And one more annoying, entitled iPhone user will get another phone within a week.  All is right with the world.

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.

resurrection

egg from our very own hen!

 

Springtime: the season of resurrection, of rebirth.  Its a beautiful time of year in the desert.  Trees burst forth with delicate green leaves. Cacti bloom. The days are long and warm, but not sweltering.  Our garden is burgeoning, as if the plants sense the 100 degree days right around the corner, and they relish these last few weeks before heat stress kicks in.  I love biking to work, smelling jasmine and orange blossoms, and feeling the yellow sun warm my bare arms.

On April 19th, my husband called out my name as I was leaving for the day.  Our clump of columnar cacti in the front yard, pretty unimpressive for about 350 days a year, had burst forth into huge, foot-wide magenta blooms.  It was a sight that took our breath away.  And the beauty was soon punctuated by joy: a few short hours later, I received a call from my stepfather.  My mother’s insurance approved treatment at MD Anderson, drug study and bone marrow transplant in all.  We are going to Houston, to get my mom the very best care, and best shot at a cure.

The spring equinox, this year on March 20th, is the time when the axis of the earth is balanced, neither towards the sun nor away.  Now, those of us in the Northern Hemisphere are leaning a bit towards the sun.  We see life come forth where all seemed lost.  After a cold winter, many of our plants looked dead only a few weeks ago, and are now sending up new shoots of life.

Our holidays aknowlege the miracle of this time of year.  Jews give thanks for blessings from God and feast with hope that the Messiah will come.  The resurrection of Jesus is perhaps the central tenant of Christianity. We decorate Easter eggs, celebrating fertility and the wonder of life that seems to come from nothing.

This year, I am breathing a little bit deeper, smiling a little wider, and enjoying more fully the beautiful flowers, the perfumed air.  I remember the dark days of winter, but embrace the hope for my own mother’s resurrection, and celebrate the minute ways in which we are all reborn, everyday.