Day +1

Date: 9.14.18
Time: 7:50pm

HGB: 10.1
PLT: 116
WBC: 2.8
ANC: 2.24

Well I made it through the cell infusion.  It took place at around 8pm last night, and was fairly anti-climatic.  It was one small bag of cells that looked like tomato soup, that took about forty minutes to infuse. 

"Cellfie"

The nurse had to sit with me the entire time to make sure that I didn't have an allergic reaction, and took my blood pressure and temperature every 15 minutes.  After it was over the night-shift nurses came into my room singing "Happy Birthday" with a piece of cake and a candle.  That was sweet.

So today is my day +1.  I've had my new cells for almost twenty four hours and I feel strong.  The insides of my cheeks are "softening" a little, but I don't have any mouth sores yet, and I still have my hair.  Keith gave it a hearty tug this morning, and it's not budging yet.  One of my nurses told me that it will most likely hang tight until my WBC gets closer to zero.  I've also been told that I'll feel like I have the flu, and will be extremely vulnerable to infection.  So far, I'm hanging tough.  Tonight I will have my first dose of methotrexate - which I've heard described as "chemo-light".  I'll receive doses on Day +1, +3, +6, and +11.  The reason behind this is because I have had a matched unrelated allogeneic transplant, I am at risk for something called GVHD - which stands for graft vs. host disease.  The Leukemia and Lymphoma society explains GVHD:

Graft-versus-host disease (GVHD) is a potentially serious complication of allogeneic stem cell transplantation. During allogeneic stem cell transplantation, a patient receives stem cells from a donor or donated umbilical cord blood. The donated stem cells contain T-cells, which are a type of white blood cell that help protect the body by recognizing foreign invaders (like infections and bacteria) and destroying them. T-cells also attack cancer cells, which is how allogeneic stem cell transplantation works to treat cancer. However, donor cells (“the graft”) may also attack the patient’s healthy tissues and organs (“the host”), which can impair the tissue or organ’s function or may cause it to fail altogether. This condition is called “graft-versus host disease” or GVHD.

So basically they're trying to make sure that my new cells don't attack my organs.  I'm kinda sick of chemo, but I'm all for that.

I want to say thank you to each of you that have reached out to me in one way or another, and somewhat apologize for my haphazard and stilted responses.  What I'm doing is hard.  But I can do it.  Its like I'm living in a nice upscale prison.  I'm a prisoner, but I have certain liberties.  I get to go out and walk in the yard (the halls), I get to order my meals from a menu, I have cable television, a patient assigned Ipad, and my room has a very decent view.

RR UCLA View from 6East

But I also have to do a lot of things that I'm not thrilled with.  I have zero privacy.  My bowel movements are a topic of conversation each day.  I get woken up in the middle of the night numerous times for meds and vital signs, and with beeping iv pumps.  I am constantly attached to an IV pole that I have to take with me everywhere - even when I bathe.  I am taking probably 20+ pills per day, and receiving numerous other treatments that make me not feel particularly good.  I can't leave this ward, and smells gross me out.  I'm sick of the menu, and I would kill for some lettuce on my sandwich or any fresh fruit or vegetable at all.  But I'm making it.  It's hard for me sometimes though, to talk about it with people.  I'm trying to keep myself in a good mental space, and it's sometimes hard to do if I have to re-hash all of the indignities that I'm constantly subjected to.  I appreciate ALL of the well wishes and ALL of the love that I feel from ALL of you.  Please try to understand that I don't really feel like talking about the battle, while I'm still in the middle of the war.  (I so tried not to use a "war" analogy, because I don't identify as a "warrior".  I'm more like the person that didn't make an appointment and has to wait in line that the DMV.  Its uncomfortable and frustrating, but I'm gonna get my business taken care of eventually.  It's just gonna take some time.  A lot of time.)

That said, so far so good.  I'm making it through.  Inch by inch. 

The Return of Fat Face Mcgee

Date: 9.12.18
Time: 09:35am
Song of the Day: "Alkaline Trio, Patent Pending"

HGB: 10.5
PLT: 93
WBC: 3.55
ANC: 3.04

Well, I've made it through chemo, not unscathed, but never-the-less in tact.  I had one really rough day on the cytoxan.  Sick and throwing up for hours before the nausea meds kicked it.  It left me feeling weak and out of it.  For awhile I couldn't even keep water down.  I guess that it's a good thing that they are pumping me full of so many fluids, but it has me feeling quite puffy and miserable.  Witness the return of Fat Face Mcgee:

Fat Face Mcgee

There are eyes tucked in there, I promise.

So I'm not sure if I've explained my regimen:  The chemotherapy that I received is called "conditioning" therapy to prepare my body for transplant.  I received 16 doses of iv Busulfan, every 6 hours for four days.  I then received 2 doses of Cytoxan, one per day for two days.  Cytoxan kicked my ass the first day.  I got a little queasy when it first started, but I thought that I could handle it and that it would go away when the infusion ended.  Not so much.  I was literally vomiting in my bucket the moment it stopped.  For four hours.  Finally my nurse got the doctor to add another anti-nausea med, and I slept for the rest of the night.  I was terrified of the second day of it, but my nurse gave me a big dose of IV benedryl, as well as the extra anti-nausea med, so I actually slept through it.  Thank god.  I thought I was pretty tough, but Cytoxan definitely brought me to my knees.

I've become quite aromatically challenged and am having a hard time with a lot of the smells around me.  I despise the soap (still) and when I'm feeling queasy, I can't even use it without my gag reflex kicking in.  Keith is going to bring me a new anti-bacterial handsoap, that hopefully I can stand the smell of. 

Speaking of Keith, I don't know how caregivers do it.  I really don't.  It's an unfathomable thing to think about him taking care of our lives at home, our cats, himself, and me here at the hospital all at once.  It takes an amazing person to keep all that shit together all at once.  Thanks for being amazing.

Keith

Today is my rest day, or my day -1.  Tomorrow  I should get my new cells.  And then the fun really should begin.

Stay tuned...

Hydration and Pee

Date: 9.8.18
Time: 8:40 am

HGB: 11.1
PLT: 112
WBC: 5.51
ANC: 3.03

So who knew that I wouldn't be able to take a shirt on or off for a month?  Oh, hey, not me.  I refuse to give in and wear the gown, so I've kinda got a Xena Warrior Princess asymmetrical thing going on, where I wiggle into my shirt by sliding it up over my hips.  I can only put my arm in one arm hole, as I am permanently hooked up to hydration full time to protect my liver and kidneys (and I have to pee like twelve times a day), and chemo every 6 hours for 2 hours at a time, so my tubes are in the way of getting fully dressed. 

Me and my dance partner

The sweatshirt is harder.  I've taken to flinging one arm across my neck like a jaunty scarf, or tucking it under my arm pit so I can wear it like a cape.  So after my daily bath (that I'm required to take) I look kinda like a cross between Snoopy and the Red Baron, and the Wild Woman from Borneo touring the halls.

I'm a fairly fast walker and I pace the halls like a caged tiger, usually in the early mornings (between 6am-7am).  They encourage you to walk the halls a lot.  13 laps is supposed to be a mile.  According to my activity tracker each lap is .08 miles - so just about right.  After a few times around I always lose track of what lap I'm on, so I've been gauging it in mileage.  Yesterday I did 5 miles total, and some light, don't touch the floor yoga stretches.  So far today, I've only done one mile, but I ain't got nothin' but time, so that'll increase.

The nurses, and one of the doctors has told me that I'm one of the only early bird patients that they have.  Thats probably because the sleep schedule here is so fucked up.  Vitals are taken every four hours, I get chemo every six, blood is drawn at 2am, and I have a variety trail mix of pills that I get to swallow everyday.  I also have people that come it to clean, to take the laundry, and to deliver meals.  I have probably gotten maybe 16 hours sleep, all together, in the three nights that I've been here if you add all of the small pieces together.  For someone that's used to getting more than eight hours a night, it's bad for my metal health.  It totally makes me a crank-o-saurus. 

Pray for my nurses.

Inpatient

9.6.18
7:07am

HGB: 11.6
PLT: 151
WBC: 6.01
ANC: 2.77

Day -8

I woke up with Carly Rae Jepsen's "Call Me Maybe" stuck in my head.  Weird.  Yesterday it was "The Final Countdown" (Europe) and Wyclef Jean's "Gone Til November".  (Although my secret goal is to be home by Halloween.  We shall see how that goes.)

I am finishing up my second dose of Busulfan as we speak.  I didn't actually get into a room until about 7:30 pm last night, so a lot later start than I had anticipated.  I had a dream that I pulled out my picc line and the care attendant was chasing me around the room trying to mop up the blood.  Not a good visual, but I at least did sleep for a few hours, so that is a good thing. 

My picc line is bugging me.  Not because there is anything wrong with it - just because it is placed about two inches above my elbow kinda on the inside of my right arm so it's in an irritating place.  I have what Keith calls a "fancy pear" wrapper sleeve thing on it and kinda keeps it all contained so my tubes aren't flapping around. 

They have started me on a bunch of preventative medications including an anti-fungal, a broad spectrum antibiotic, medication to prevent heartburn, and zofran to prevent nausea.  No nausea yet.  A little bit of dry mouth which I am trying to combat by rinsing often with my gross mouth care rinse (saline solution and baking soda) and drinking lots of water.  I'm also sensitive to the smell of the soap, and have been trying to put lotion on my hands after I wash them, so it is not as prevalent.  I woke up irritable and cranky, but at least I realize that I'm irritable and cranky and I can try to control it and power down a bit.  I have 14 more doses of Busulfan to go.  It is infused every six hours and takes about two hours each time.

I don't have the patience for television yet.  I'm guessing that eventually I'll get bored and will develop a tolerance, but right now I just find it annoying - with the exception of the Weather Channel, which I had on as background noise for a bit last night. 

My breakfast just showed up, and I feel hungry, so that's a blessing.

Day -7.

The Countdown Begins

T - minus 12.  And so it begins.

On Wednesday, September 5th, I will be admitted to the hospital to begin my stem cell transplant conditioning therapy.  I will be having sixteen doses of intravenous Busulfan, spread over 4 days, and two days of Cytoxan.  I'm going to have a Picc line inserted into my arm on Wednesday and will start my first dose of Busulfan that night.  The transplant will take place either on September 13th, or 14th, just depending on when the cells get there.  My coordinator told us that it is a very anti-climatic event, as it is a very small bag of cells that is given like a blood transfusion.  I've had all of my pre-transplant testing, have a "perfect" match unrelated donor, and have signed all of the scary consent forms.  This is happening. 

I feel...not ready, but kinda like I should have done this years ago.  The hardest part for me will be being away from my home for two full months.  I've been told to expect to spend a month in the hospital, and then a month in temporary housing adjacent to UCLA.  For some people being in the heart of LA would be exciting.  For me, it's hell.  I'm a true mountain girl through and through, and the fact that I'm going to be missing the majority of the Fall season in the mountains makes my little heart sad. 

Fall 2017

I will suffer through, mostly because I don't really have much of a choice.  I'd much rather be home hiking our little section of the Pacific Crest Trail, watching the leaves turn, and the sage bloom, splitting and stacking firewood, and waiting for the first snow...but for this year, for this season, I will endure so that I can enjoy all of those things for many Falls to come. 

But goddamn, it's going to be hard to be away from my home and these little faces for so very long.

Paco & Beeker

Miss

Trying to get my fill of everything.  Cat love and snuggles.  Chocolate cake.  Jacuzzi's under the stars.  Watching the sun rise through my bedroom windows in the mornings.  Hiking in the evenings.  Kisses and holding hands.  Having hair...

I just keep telling myself that it's only a temporary absence.  It's the only way I'll make it through.  

Skipping Ahead

Reading back where I left off, it's hard to know where to start.

I'm going to have a stem cell transplant.  It's happening soon.  Next month.

I have not had a catastrophic loss of response to my current TKI, but it is failing.  The tests that measure my cancer are creeping up consistently, and there is no telling how long Bosulif is going to continue to work to suppress the cancer proliferating cells, and prevent them from going wild again.  I have tried and failed Gleevec (imatinib), Sprycel (dasatinib), Tasigna (nilotinib), Iclusig (ponatinib), and am now losing response to Bosulif (bosutinib).  There are no other currently approved TKI's to treat CML, so I'm left with little choice.  If I lose complete response to Bosulif, and my CML goes into Blast phase, it will significantly reduce my chances for survival.

I have been experiencing more minor infections, increased fatigue, and my FISH tests have gone from a low of 20% last October back up first to 26%, and in June, up to 29%.  That means that out of 100 cells that they looked at under a microscope, 29 of them were positive for CML.  That's nearly one in every three.  Last year, it was only one in every five, so it's a slowly-moving, yet alarming trend.  (The bcr/abl PCR test has also gone up from 3.6% to 5.6%.)

I've spent the past month or so racing around trying to prepare for a nightmare.  Trying to smooth the way.  Stocking up, cleaning up, eating up.  I don't think that you can ever be fully prepared for something like this.  I've done my best.  Most people don't even get that chance.

There are undeiable risks. I just keep trying to remember, individual results may vary.

The Median Isn't the Message

I intend to rage.

Keeping On

No news is no news.

My January appointment at UCLA came and went. My PCR ticked incrementally down from 3.7% IS in August 2017 to 3.6% IS in January.  So, not really down by leaps and bounds.  A bit disappointing progress for an additional 5 months on full dosage (500mg) bosutinub.  Progress is progress, however slow, small, or incremental it may seem; I'll take it.  I again chose to delay bone marrow transplant preparations, in favor of continuing on my current treatment.

Chose is really the optimum word there, as by choosing to forgo a transplant at this time, I am essentially going against the recommendations of my doctors.  I've found more peace with the decision, and am committed to continuing TKI treatment until or unless that option is no longer feasible (like, if my PCR starts going up.)  My UCLA doctor has not contacted me to make a follow-up appointment, so at this time there are no impending trips to Los Angeles in my foreseeable future which, quite frankly, makes me ecstatic.

I have not had another PCR test since January, but will firmly suggest/demand that my regular oncologist order one when I see him again in May.  I have had subsequent FISH test, which came back higher than the previous - which is decidedly NOT GOOD - but not yet cause for alarm.  My FISH in October 2017 came back with 20% cells positive for the BCR/ABL1 translocation.  FISH performed in March came back with 26% positive.  The lab technician noted "There is no significant change from the previous studies, when the same abnormality was observed.  This result is suggestive of persistence/recurrence of the abnormal clone."  All other blood test results were normal.

So that's how I live.  Hope for the best.  Do those things that are within my power to tip the scales in my favor.  Live life.  Try not to sweat the small stuff.  Try not to sweat the big stuff, either.  Keep on keeping on.