Sunday, October 14, 2018

Day +31 I Wanna Be Sedated

Date: 10.14.18
Time: 3:24pm

Fun fact: My mouth tastes like I licked an envelope.  ALL THE TIME.  Not like I just licked envelope glue, but kinda faded, like I did it 20 minutes ago, and the bitterness is still there.  I hope it goes away, eventually.

They forgot to give me a print out of my blood counts at my appointment Thursday, so I don't have them on hand.  Platelets were a touch lower, but not concerningly so, magnesium was still low despite the fact that I take 9 magnesium pills a day, but that's because the Tacrolimus eats it.  My Tacrolimus level was high, so the NP had me hold my dose for a full day.  Hopefully that helped to bring it into the range that we are looking for.

Morning Trail Mix and a Shot of Liquid Sunshine

My steroids have been reduced to 30mg daily, and no GVHD flares, so that is a good thing, because my face is approaching the size of a planet.  It will most likely continue to get fuller until I am off the steroids completely, which may take awhile.  My doctor indicated that once I get down to about 20mg, that they will taper me much more slowly, so it could still be several weeks or months, depending on any reactions that I have as the taper continues.

My face on steroids.
What my face usually looks like.

Thursday was a marathon day at the clinic, I was there from 8:30am until 2:00pm.  I had my blood drawn, had my PICC line dressing changed, saw the NP, and had my IVIG infusion.  I've been feeling a little under the weather, so I mentioned to the NP that I had a dull headache, and my glands felt tender.  She said that it's possible that the headache is caused by the Tacrolimus, and she felt my glands, and said that she didn't detect any swelling or lumps, but decided to take a nasal swab to test, to make sure that I wasn't fighting any sort of viral infection, or anything else.  I don't know why I never thought about what a nasal swab would entail, but I'm pretty sure that she nearly reached my brain with how far she stuck that thing up my nose.  The results came back on Friday - normal.  Still feeling a bit tender and run down, though.

Still having a difficult time sleeping and staying asleep.  The NP gave me a prescription for Trazadone which is an antidepressant with an off label usage of a sedative.  She said that it is a "cleaner drug" than some other kind of sedative, and that it would have less interactions with the medications that I am currently on, so I'm giving it a try.  For the most part, I think that it has been helping me sleep, but I've been getting horrible tension headaches in the back of my head and neck.  So bad that I can't stand up without stopping dead in my tracks and closing my eyes, and can't turn my head to the right without debilitating pain.  I don't know if it's the stress of everything that I have going on right now (which is very possible) or if it's the new medication.  I'm going to try to go without it for a few days and see if the headaches go away.  Back to lying awake staring at the wall all night.  Sigh.

In preparing for my transplant, and even now post-transplant (a full month, people, I'm making it), I found the blogs and the stories of others that have been through this strange and awful thing so vital.  And that's a big part of why I continue to tell my story.  Its so rare for a CML patient to fail TKI therapy and have to go to transplant, I hope that it may help someone in some small way, because to be honest, it's not easy to write.  It's not easy to share the details of your life when you're at your worst.  In the words of another transplant survivor, Kevin McDevitt, " I realized that discussing one’s personal trauma publicly requires a level of emotional nudity that borders on pornography. That may sound extreme, but just know that if you’ve felt any truth or connection to what I’ve been writing, it’s come at great emotional expense. "  I'm the kind of person, that when I'm sick, or I don't feel well, I just want to hide away until I feel better.  It's hard to put it on display, it's a hard thing to share.  That said, I'm so grateful and thankful for those that went before me and have shared their stories:

(you will need to sign up for a CaringBridge account to access any of the CaringBridge links)

And also this young woman, who was diagnosed with Ph+ AML, which is very rare.  She had an incredibly difficult time with post-transplant complications and debhilitating GVHD that she is still struggling with.

I think that the biggest take-away that I've gotten by reading each of these other stories is that everyone is completely different, everyone's recovery happens at a different pace, that everyone suffers in their own way, and that no one else can really comprehend the levels and the depth of another persons suffering.  I will continue to share the details of my recovery, but please be patient with me, and please understand that putting myself on display when I'm at my worst is a difficult thing to do.

I'm not due back at clinic again until Wednesday or Thursday (depending on if they can get approval to schedule for my IVIG - still struggling with insurance issues on that), so I hope to have an uneventful handful of days.

Tuesday, October 9, 2018

Day +26 Onward

Date: 10.09.18
Time: 6:30am

No updated blood counts, as I haven't had labs drawn since 10.04.18.  My next clinic appointment isn't until Thursday, and my team believes that I'd doing very well.

Still having trouble sleeping.  I've been lying there since 4am waiting for the sun, and a respectable hour so I felt like I could get up.  It doesn't help that my internal temperature gauge is all screwed up.  I'm having crazy night sweats, and I wake up sweaty several times a night, even though I keep the room arctic.  The care partners at the hospital used to joke that when Keith came down to stay that he would need extra blankets unless he was a penguin.  I told them we're from Big Bear; we're used to the cold, but I think that I'm maybe running a little hotter than usual most of the time.  (No temperatures, though, I've been checking a couple of times a day.)  I think the sleep might be improving incrementally, as it's only taking me an hour or so to fall asleep, but my activity tracker recorded 2hrs 50min of deep sleep last night, and 4hrs and 26min of "light".  It's still a far cry from the way I used to sleep, but hopefully as I continue to reduce some of my meds, the sleep will get better.

I'm down to 40mg of steroids a day (thank goodness) and all has been well on that dosage, so hopefully I will get to reduce further this week.  I am still on a fairly high dosage of Tacrolimus, however, and the tremors and shakes are frustrating and foreign. 

A lot of people have asked me about my dietary restrictions.  I am no longer required to eat a "low bacteria" processed neutropenic diet.  I can have fresh fruits and vegetables, as long as they are well washed, and can eat most things.  My only restrictions are that I cannot have raw or under-cooked meat, eggs, seafood, unpasteurized dairy products, or any food from buffets, service deli's, any food cut or cleaned by someone else, and all cooked food must reach an internal temperature of 165 degrees.  I am still eating a fairly processed diet, as Tiverton (the hotel) does have a communal kitchen, but I feel uncomfortable mixing my food with everyone elses, so we have just been using the small bar fridge in our room to store our meals, and really buying a lot of convenience foods that can just be cooked in the microwave.  Still the queen of peanut butter and jelly sandwiches.

Tiverton House

I've had a difficult week mentally, as my employer decided to change our health insurance as of October 1st.  I was previously enrolled in an HMO plan, and as such, my selected medical group was responsible for my post transplant care up until day 90.  (I was still responsible for meeting my deductible and my max out of pocket for the year, but they were responsible for covering and making sure that I got the required care that I needed.)  My employer decided to no longer to offer an HMO plan, beginning on October 1st, so my medical group immediately dropped all plans of after care, and I had several departments at UCLA scrambling to try to secure emergency authorizations to keep "continuity of care" so that I could get the treatments that I immediately needed.  The staff at UCLA said that they have never had this happen to a transplant patient.  On top of the change from HMO to PPO, I am now again required to meet a new deductible and max out of pocket amount between now and December 31st, 2018 and then, again, beginning on Jan 01, 2019.  Under my new PPO, the coinsurance on a single month of ONE of my required medications is $2765.  When I went into transplant I fully expected to meet my max out of pocket for 2018 of $4500, but I didn't expect to meet that, and then have to meet another max of $6350 as well.  Between appointments, and fatigue, and not feeling very well some days, I've been working on contacting the drug manufacturer for the most expensive of my medications to see if they have any copay assistance programs, researching assistance programs online, and juggling calls from the financial department, nurses, and social worker at UCLA who are all trying to help make sure that I continue to get the care that I need.  It's fucking exhausting and entirely emotionally draining on top of everything else that I have going on right now.

IVIG Expensive but Necessary
So, I am keeping on keeping on, doing my best.  I feel fatigued during the days, but part of that may be my lack of quality sleep at night.  My next clinic appointment is Thursday - and it will be another full day of having blood drawn, seeing the nurse practitioner, and having my IVIG infusion, which takes 3-4 hours.  (I will need to have IVIG weekly until day +100.)  Again, "Intravenous immune globulin ("IVIG") is a product made up of antibodies that can be given intravenously (through a vein).
Antibodies are proteins that your body makes to help you fight infections. Each antibody made by your body is slightly different, because it fits like a lock and key to every foreign substance (such as a virus) that gets into your body. Over the course of your life your body makes thousands of different antibodies. IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated collection of antibodies against many possible foreign substances your body might encounter.One reason you might need IVIG is if your body does not make enough antibodies. The IVIG simply provides extra antibodies that your body cannot make on its own. The antibodies usually last for several weeks and help your body fight off a large variety of infections. If you are getting IVIG for this reason, you will need to get it on a regular schedule."  

I'm a quarter of the way to Day +100 which is a really important milestone post transplant.  Day +100 is when the greatest risk for critical side effects is past, and hopefully my new stem cells have engrafted and started making new blood cells. 

Onward and upward. 

Friday, October 5, 2018

Day +22 Surreal

Date: 10.05.2018
Time: 8:15pm

HGB: 12.6
PLT: 159
WBC: 5.62
ANC: 2.73

Well, I continue to lose my hair. I thought that I was pretty much as bald as I was going to get, but as I was washing my...head (by the way, what exactly are you supposed to wash your bald head with? Body wash? Shampoo? Mr. Clean? ) A bunch of little whiskery hairs kept coming off on the wash cloth. I have one patch right in the front that is still hanging on, and I'm convinced that if I hadn't shaved it, I'd have a cupie doll curl right in the top front. How attractive.

My face is also filling out and I'm starting to get the traditional "moon face" that usually goes hand in hand with prolonged high doses of Prednisone. I look in the mirror and I hardly recognize myself.  I tried to remedy that somewhat by putting on makeup the other day, but the Tacrolimus that I am on makes me so shaky that I ended up looking like Edward Scissorhands - well bald, fat Edward Scissorhands.

Things continue to go well healthwise, and my Dr. said that I'm doing "so, so, well" when I saw her yesterday.  I feel like a shell of a human being though.  I'm not allowed yet to resume my life in any way that feels even a little bit normal, I look like the marshmallow man version of myself, I barely sleep, and I spend my time devising menial tasks to keep myself occupied.

Monday, October 1, 2018

Day +18 The Changing of the Guard

Date: 10.01.18
Time: 8:54pm

HGB: not sure
PLT: better than before
WBC: even higher
ANC: nothing precise

I hate the city.  There are too many people here.

The last appointment that I had at the clinic was yesterday morning, and my nurse didn't tell me my specific counts, just that they were the same or better than the Thursday before, except that I needed an infusion of magnesium.  I'm already on about 750mg of magnesium that I take orally everyday, but apparently one of my other drugs - Tacrolimus - eats the magnesium in your body.  So Sunday morning, I had to have a magnesium infusion that lasted about an hour.

Day off of clinic today, so no new updated blood counts, but I was doing well as of yesterday.  Keith went home today, and my mom replaced him on duty for a couple of days.  Snuck away for about an hour today to visit the Mildred E. Mathias Botanical Garden (which is across the street from where I am staying.)  I touched nothing, but sat in the shade for awhile next to a little stream, and walked a mile or so along the paths.  Not crowded, which was a nice change, since everything around here seems so crowded all of the time. 

Botanical Garden

Mom and I walked to Trader Joes and each picked out a frozen meal for dinner.  (God I can't wait until I get home and can eat real food again.  Technically I am allow to eat most foods at this point, but it's hard to cook and eat well out of a hotel room.)  Food still doesn't taste right anyway, so nothing that I've had yet has been spectacular, or even tasted the way I wanted it to.  Well, except...

Living the Dream

All day appointment extravaganza happening tomorrow.  Blood work, appointment with the nurse practitioner, dressing change for my PICC line, and infusions if necessary according to blood work.  Everything has been going smoothly, and I hope it continues that way...except I don't sleep.  The bed here is unforgivably uncomfortable, but it's not just that.  I'm not sure if it's the steriods (its probably the steroids) but I sleep for maybe 4 hours a night, and lay awake for hours at a time.  It generally takes 1-2 hours to fall asleep, then I sleep for 2-3 hours.  Lay awake for another 1.5, sleep for another 1-2, generally awake by 5:30am.  It sucks.  I told the Dr. on duty on Sunday, and he said he could prescribe some melatonin or something.  (Bullshit.  Tried it in the hospital.  It didn't work.)  So basically, I think that I'm just pretty much screwed until I'm able to taper off the high dosage of steroids...which is entirely dependent on whether or not I start to show signs of GVHD.

Le sigh.  No rest for the weary.

Friday, September 28, 2018

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.

Monday, September 24, 2018

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.

Thursday, September 20, 2018

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.