Day +15 Outta the Joint

Date: 09.28.18
Time: 8:27pm

As of 09.27.18

HGB: 11.3
PLT: 97
WBC: 5.83
ANC: 3.06

They let me out!  Not without restrictions, but they decided that I was doing well enough to be discharged from the hospital to the "hospital adjacent" housing, and Keith came and picked me up on Wednesday night!  I got unhooked from my trusty IV pole, threw on my wig, loaded up my tank top/ lounge pant gear into my mega suitcase, and moved the half a mile from UCLA ward 6East to Tiverton House! 

Not sad to see you go.

Still have my Picc, but at least I'm detached.

My home for 21 days

Tiverton is housing mostly specifically for UCLA medical patient recovery.  It's nothing fancy, but it is convenient.  So I've had two nights now where I haven't been woken up for vitals in the middle of the night.  Two nights of sleeping next to Keith.  Two nights of freedom, where I've been able to walk in the open air and feel the breeze a bit.  (While masked, and sanitized, and extremely careful, of course.) 

The hard part is that I have little to do, except focus on recovery.  I am required to have a caregiver 24hours a day, and required to stay within about 15-30 minutes of the hospital in case anything happens and I need medical attention.  So, it's like we are on vacation in LA, but we are not allowed to go anywhere crowded, I still have dietary restrictions, so I must prepare most of my food myself, and we can't really go too far since traffic is always outrageous.  I have been able to walk outside some with Keith.  We try to go on less busy streets and not during peak hours, and it feels good to try to regain some of my strength. 

So, I'm still very fatigued, still having a lot of taste issues (things taste and smell gross/weird) and generally feeling slightly under the weather most of the time.  I'm 11 different oral medications that I take multiple times a day, and may still have at least one med that I need to get by infusion on a weekly basis (IVIG).  I'm on a huge dose of steroids right now (70mg per day), so I haven't lost more than a few pounds since they make me feel jittery and ravenously hungry most of the time.  They will begin to taper these down, but it's a slow process, they need to do it slowly so that I don't have any flare ups of GVHD.  Until then, at least my mouth doesn't hurt as much anymore and I can actually eat without too much discomfort.

I had my first "clinic" appointment yesterday.  Everything looked ok, including my counts, so they gave me a couple of days off, and I don't have to be seen and or have blood drawn until Sunday.  The clinic is less than half a mile from where we are staying, so I have been able to walk there (with Keith as escort) and hopefully I can continue to do so. 

Tres' Chic

So good things are happening.  Cleared to brush my teeth with a real toothbrush instead of a sponge, able to take showers again instead of baths, unhooked from my dance partner, and reunited with my real partner.  It may be some time before I am released to go home since we live so far away, but for now my quality of life has definitely been improved this week.

Day +11 Wigging Out

Date: 9.24.18
Time: 5:42pm

HGB: 9.4
PLT: 13
WBC: .88
ANC: .15

As you can see I have a few neutrophils floating around in there.  And thank goodness for them.  I've been on iv morphine every 4 hours for the past four days - the pain in my mouth and throat has been so intensive.  Eating half of a peanut butter and jelly sandwich last night felt like swallowing glass.  The neutrophils are going to help me to heal faster so that I can swallow again without immeasurable pain. 

My team of doctors are tentatively excited about these little cells.  The didn't expect to see them on the upswing for a couple of days more, at the very least.  In fact, for the past four or five days they'be been telling me that things are going to get worse before they get better.  I'm hoping they're wrong.

Doing a lot of morphine sleeping, a lot of drooling on my pillow instead of swallowing, and a lot of slouchy hipster hat wearing on my bald little head.

Before I left for the hospital a good friend let me try on all of her wigs.  The short blond is going to be my go-to.  And maybe the long blond when I want to feel a little bit country.  (Thanks Marilyn & Chris.)

Scandanavian Bob

Mad Scientist

Storm of X-Men Fame

Midlife Crisis

Texas Wife

Aside from all that, just hard at work growing cells here.

Day +7 C'est La Vie

Date: 9.20.18
Time: 7:34pm

HGB: 9.8
PLT: 23
WBC: .08
ANC: 0

I have no hair.

Cancer Style

Lex Luthor Look

It was coming out in strands when I touched it, and getting all over my bed when I slept.  It had to go.  Hopefully it doesn't take too long to come back again.

My mouth and throat are sore and peeling.  Eating, drinking, swallowing pills, hell - swallowing my own spit - hurts today. 

Making it through, regardless. 

Day +5 Still here

Date: 9.18.18
Time: 7:55pm

HGB: 10.1
PLT: 19
WBC: 0.28
ANC: 0.1

Well I'm still here.  I still have all of my hair.  I still have cable TV.  I still get my meals delivered by men in tuxedo shirts.  Tonight's entree:

Gourmet Dining

I'm beginning to get a bit of mucocitis, so eating is becoming more and more difficult.  Inside my mouth my inner cheeks are starting to peel, and my throat is starting to hurt, which makes eating and swallowing more difficult.  The smaller the bites and the mushier the food, the better right now. 

I still am keeping busy with my hall laps.  (Trying to keep up three-ish miles per day.)  This weekend I was doing my laps and in a little alcove in one hallway, I kept passing this green peanut m&m on the floor.  I started fantasizing about peanut m&ms, and how I'm on lock down, and don't have any access to peanut m&ms.  After half a dozen or so laps, I finally got closer so I could get a better look.  I don't know what I was going to do.  I certainly wasn't going to pick it up off the floor and eat it.  I think I just wanted to see the printed "M&M" on the shell up close.  Guess what?  It was a green cap like the ones they put on our tubing.  Talk about disappointment of the week.

Probably for the best that I don't go around eating floor M&Ms, as it looks like my blood sugar is elevated.  This is almost certainly due to the Herculean dosage of steroids that they currently have me on.  The steroids are yet another medication to make my body more hospitable to my new cells, and prevent any GVHD flare ups.  Hopefully I can start to taper the steroids before the blood sugar gets out of hand, and I have to start taking insulin.  When I asked about a taper, the doctors told me that won't begin happening until I am released out-patient, so I've got another probably 10-14 days to try to keep a balance.

I'm currently failing to keep a balance with my blood pressure, however, which has been trending up as well.  This is most likely due to yet another medication that they have me on called Tacrolimus.  Tacro is given as an immunosuppressant to, again, make sure that my old body and my new cells get along.  They've started me on a low dosage of blood pressure medication just tonight.  It's most likely temporary, but it's difficult to not have any control over your systems. 

Tomorrow, Day +6 is another big day.  I'll have an infusion of IVIG.  WebMD describes the need for IVIG as:

Your body's immune system normally makes enough antibodies to fight germs that cause infections. But if you have an immune deficiency, your body can't make enough of them. ... IVIg gives you antibodies that your body is not making on its own so you can fight infections.

Tomorrow is also my third dose of mexthotrexate - the "chemo light", so big day on the ol' IV pole.

So we'll see tomorrow if my WBC finally hits the magic number, which is a big zero.  Once I hit zero, the next thing that I'll be waiting for is that number to climb again, which will mean that my new cells will have found their home in my bone marrow and started to grow - a process medically referred to as "engraftment".  It's also possible that I'll need my first transfusion tomorrow.  My hemoglobin is holding steady, but it's possible that I'll need platelets, as they transfuse when your platelets drop below 10. 

Rest assured all.  I'm just doing my thing.  Controlling the things that I'm able to (mouth care, exercise, good personal hygiene) and rolling with it for the things that I can't. 

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.