Day +100 Hard Core

Well, I made it.  Today is day +100 and I didn't die, so, success!

Blood counts:
HGB: 12.0
PLT: 172
WBC: 3.79
ANC: 1.6

Bone marrow last week did not go well. The nurse practitioner had a really hard time getting through the bone, and then once she did, there was no fluid to pull out. Dry tap. So they got a different NP to give it a try. It was a struggle. At one point she was bracing her knee up on the table with me, and pushing as hard as she could, and still couldn't get through. She was finally able to get in, and pull one vial of aspirate, but then the well dried up, and they couldn't get any more. (They needed three.)  So they took the one aspirate, and a piece of the bone and ordered most of the tests to be performed on peripheral blood.  And its a good thing too.  When I went back this past week, none of the bone marrow samples had sufficient cells for testing.  So I have two holes in my hip bone, but nothing to show for it.  I asked the NP if the bone grows back, and she said, "I would hope so."  Love the honesty.  Yeah, I would hope so too.

I also had a dental crown fall off this week.  (Again.  The crown actually initially came off a couple of weeks ago, but my doctors told me that they would prefer that I not have any dental work done while I was still on steroids, so I put it back on with dent-u-temp and hoped for the best.)  I'd been super dreading going to the dentist to have it fixed.  I hate going to the dentist the most because I hate getting the lecture about how my bad my previous dental work is, and how this silver filling is cracking my teeth, and this crown fits poorly, and this tooth has a cavity.  I was hoping he would just glue the crown back on and I could be on my way, but that is never the case, and it turned into more than I had hoped for, when he found a cavity in the tooth in front of the crown, that could only be filled when the crown was removed, so I ended up in the chair for over two hours having a filling, and then a build-up, and then getting the crown re-cemented.  When the dentist asked me why I hadn't come back to complete the other things that I needed done, I told him, uh, yeah bro, in case you couldn't tell by my bald head, I've had some other more important health issues to worry about lately.  I hate the dentist, but I'm glad I sucked it up and acted like an adult and got it taken care of, so that I didn't have to worry about it falling off again over the holidays.

It feels like my whole life is sucking it up and having to act like an adult, doing things that I don't want to do, all of the time these days.  There is no putting things off, there is no procrastinating, all the time it's hard core adulting every day, all day.  Doctors appointments, scheduling appointments, at home nursing appointments, driving in traffic, medication refills, medical bills, dozens of pills multiple times a day, broken down cars, loose dental crowns, showering with a plastic bag on my arm, antifungal bath powder, constant hand washing/sanitizing ALL OF THE TIME.  I know that sometimes you gotta do things that you don't want to do, but do you have to do them EVERY DAY?  Cause I do.

Despite that, here I am 100 days post transplant, and according to the doctors I am doing well.  I am <97% donor, which means that the transplant worked, and that the donors blood making system has replaced my own.  I've had no GVHD, no significant infections, and I've made it to day +100 relatively unscathed.  They pulled out my PICC line on Thursday, and I couldn't be any happier about that, as the skin around it was beginning to get very irritated.

No more PICC

 I still need to be very careful about being getting sick, as I was told that any type of infection could activate GVHD - which I had no clue about.  I'm still sleeping about 12 hours a day/night most of the time, and really don't have very much energy.  I'm starting to get a little bit more fuzz on my head, and it's almost more unattractive than being completely bald.  I anticipate that in another 6 weeks I'll look like a Chia Pet.  Still not sure what color I'm going to get, right now there's a bit of variety, so we'll see which ends up dominating.

Kitten fur

Christmas this year will be quiet, which is my happy place anyway, as I've always been an introvert, and generally find holidays and occasions exhausting.  My next doctors appointment isn't until next year!!!  (Ok, it's on the 2nd, so barely next year, but it's nice to know that we don't have to make the drive in the midst of the crazy holiday traffic.)   Keith has been amazing through all of this.  Extremely protective of me, the voice of reason when I'm on the edge, he's taken on so many of the household tasks that I'm still unable to do, and kept us both sane during all of this crazy. 

Thank you.  You're the wind beneath my wings. 

Day +84 Administrative BS

Still have weekly appointments at UCLA, and weekly IVIG infusions at home.  My predinsone (steroids) have been reduced from little to none just this past week, and I'm sleeping 12+ hours most days.  I wake up at a normal hour, but just can't seem to make it past 9 or 10 am most days, and end up back in bed until 1 o'clock.  On the rare days that I'm not able to take a nap, I'm usually out for the count and fast asleep by 8pm.  Its definitely an adjustment, and I hope that in time, I won't feel so exhausted all of the time. 

Adding to my exhaustion is the 8+ hours I spent on the phone with the insurance company and the mail order pharmacy that they required me to use for one of my medications, last week.  The prescription was initially submitted to them on November 15th.  First I was told that there was a problem with the quantity, and getting approval, then I was told that a pre-authorization was required.  I worked with the dr's assistant to get that taken care of.  Then I was told that a prior authorization was not required, but that the pharmacist put the medication on hold because it "interacted" with another of the medications that I am on, (uh duh, I think that my doctor is probably aware) and finally they promised to expedite the shipping on November 27th. 

I made them give me a tracking number, but every time that I pulled it up, there was no information available.  My doctor called in a "back up" to my local Walgreens, so I called them to see if I could get the prescription filled there, since I was told that I could not miss a dose (Tacrolimus).  I was told by Walgreens, that my insurance would not cover the cost through them, and that if I wanted to fill it, it would cost $135 for one month supply, out of pocket. 

Finally, when I had one dose left, I called the mail order pharmacy again and make them look up when it had been shipped and where it was.  On the 30th they told me that a label had been created on November 27th, but the medication had never actually left the facility.  Seriously?  So I asked them what I was supposed to do?  I can't miss a dosage, my insurance company is requiring me to have it filled through them, the shipping was supposed to be "expedited" three days earlier, and I only had one day's worth of medication left.  I was told that my local pharmacy could fill it, and that they would give them an "override" so that insurance would cover all but my copay.  I called Walgreens and told them that they would need to call in for an override, so I could fill the medication through my insurance.  They called the insurance company/mail order pharmacy and were denied.  Seriously?  Seriously?  So....fuck me.  I had to call the mail order pharmacy again, speak to another agent, who also promised an override, but this time actually got it to to through, and then wait for Walgreens to fill the prescription so that I could go pick it up.  Hours and hours spent on the phone to get a single prescription filled.  Is it any wonder why I'm so tired?

The original prescription from the mail order pharmacy came in the mail today. 

Still very little hair.  The doctor told me that generally after transplant hair doesn't start growing back until between days +60 to +80, and that it will grow in very slowly.  I have a bit of "kitten fur" as Keith calls it, coming in, but I still look completely bald unless you are standing within 6 inches of me.  Speaking of which, please don't.  I still need to be very careful about being around people and wear my mask whenever I go anywhere, or see anyone besides Keith, or my home nurse. 

Next week at my UCLA appointment (pending insurance approval) I should be having a bone marrow biopsy that will give me more information about whether or not there are any lingering leukemia cells, and the percentage of my cells that are donor, and the percentage that are my old cell line.  The less leukemia, and the more donor, the better.  Hopefully this poke in the bone goes as easily as my previous ones have.

Day +65 Sleepy

Date: 11.17.18
Time: 5:10pm

Blood counts: all good

Still struggling with fatigue.  I slept all day again yesterday.  (Hey, at least I'm sleeping now, right?)  My prednisone has been reduced to 5mg daily, so that is probably part of the reason why I'm so tired.  The edema...the edema is still there.  Last week, the doctor finally agreed to let me take lasix, which is a diuretic or a "water pill" and it seemed to be helping some.  However, this week, I showed up with what looked like a razor rash on my shins...turns out, lasix has a "sulfa drug" component.  Which I am allergic to.  So no more lasix.  I've been doing my best to avoid a lot of salt, and wearing compression stockings, but every morning I wake up and can see the seams of my pants imprinted in my legs from ankle all the way up my thigh, so I'm retaining quite a bit of water, but can't really do much about it.  Since I'm not having any breathing or heart issues, the plan is once again continue to monitor, and do what I can, personally, to try to keep myself comfortable. 

Still very little hair on my head.  I'm starting to get a tiny bit of stubble, but at the rate that it is growing, I will never have long hair again.  I do wear a wig every once in a while, but if I'm doing anything other than sitting around, they make me really hot really fast, and it ain't a pretty sight when I start sweating my bald little ass off.   

Sitting around my house with hair.

So really, I sleep a lot.  I do a few things around the house when I'm able.  I eat more than I should for the level of exercise that I get (slim to none), and I'm still pretty much on lock down at home, except for my weekly appointments at UCLA, which is for the best, because I'm terrified on getting an infection (a cold, the flu) and the less exposure that I have to people, the better.  I'm beginning to realize that my recovery is going to take a lot longer than I had originally anticipated, since I can't even make it through an entire day right now without a 4 hour nap.

Day +51 The Thick of It

Date: 11.03.18
Time: 2:36pm

HGB: 13.9
PLT: 194
WBC: 8.43
ANC: 7.21

Well, I'm halfway to day +100, and most of my counts continue to look really good.  I did have to page my doctor at home last week as my ankles, feet and calves swelled up so bad that I couldn't put my boots on.  Cankles run in my family, so I wasn't that concerned until it kept getting worse.

Cankles

Since I wasn't having any shortness of breath (heart failure) or pain in my legs (blood clot) she advised me to elevate them, wear compression socks, and monitor and if they didn't get better to come into the clinic.  I spent all day last Sunday with my feet up, and the swelling went down a bit.  At my appointment on Tuesday, all of my blood and metabolic levels were pretty normal, except for my creatinine - which was within normal range, but a little high for me.  (Creatinine helps monitor kidney function.)  The nurse practitioner suggested that we just monitor for now, and see if we can figure out what's going on.  Its very likely that the fluid retention is a side effect of one of the medications that I am on, as pretty much half of them list edema as possible side effects.  They keep swelling and going down again - I think it is related to how much activity I do.  I'm retaining quite a bit of water today, and my feet and ankles are quite swollen - but then, Keith and I took at 2.5mile walk yesterday.  The more I do during the day, the more swollen I am at night.  Which is a bummer.  I don't want to have to sit around with my feet up all day.

Not that it matters what I want, I can hardly stay awake for a full day this week.  At my appointment on Tuesday, the doctor reduced my Tacrolimus to .5mg per day, and also reduced my prednisone (steroids) to 15mg daily, and it has wiped me out.  I've needed to sleep half of the day most of this week, and feel EXTREMELY fatigued.

I've been able to get out and walk a little bit, but not nearly as much as I would like.  The sunsets have been absolutely beautiful lately, and the fall weather has been just lovely.  Warm sunshine during the day with a nice cool breeze.

Fall Sunsets

In other news, my team was able to arrange for me to get my IVIG infusions at home, instead of having to travel to LA for them.  They take 4+ hours, so its quite a long time commitment.  I was going to try to schedule them for the days that I am at the clinic already having blood work done and seeing the doctor, but it just makes for too long of a day.  Last week we left for UCLA at 8:15am, I had a 11:45 blood draw, and a 1:30 appointment, and they were running a little behind, so we hit traffic all the way home, and didn't get home until 8pm.  Thats a long freaking day.  There is no way that I could have added a 4 hour infusion to that day.  So I have a nurse that travels here and gives me my infusion.  It means that I have to entertain a stranger in my home for 4 hours, but at least it cuts out our travel.  I'm still not released to drive, so every time I have to go to UCLA, it eats up Keith's whole day too.

So this week I'm super tired and I'm super puffy, and will most likely spend most of my days sleeping with my feet elevated.  I'm hopeful that eventually, things will start to even out, but right now I'm in the thick of it, and I'm kinda just taking it all as it comes.

Day +43 Restrictions

Date: 10.26.18

Time: 3:33pm

Fun fact: Every time they draw blood, they do a "cross and type" test that tests your blood type because my blood type will be changing.  My doctor confirmed that my blood type will change from A+ female to B- male (meaning that my donor was a B- Male).  Crazy, huh?  This works because HLA typing doesn't have to do with blood type, it has to do with tissue typing.  This means that I will become a Chimera.  

"Chimerism is a condition whereby a person has not one but two complete genomes (sets of DNA) in their body. One genome is found in one region or organ(s), while the other genome can be predominant in other organs or tissues."

My blood will look like it belongs to a B- male, but any other DNA (hair, saliva, skin cells) will be me.  If I were a criminal mastermind, this would be ideal, but I'm not, so it just seems kinda weird and gross.  

I haven't been to UCLA since Monday, and I'm so glad to be home, but I still live with a bunch of restrictions.  Most of the risks associated with a stem cell transplant come AFTER the chemotherapy and the actual transplant itself.  Be The Match says, 

"Some risks are common like temporary hair loss and infections. Others are much less common, like your body rejecting the new cells and possibly death. Some risks are only with certain types of transplant. For example, graft-versus-host disease (GVHD) is only a risk after an allogeneic transplant (cells from someone else). 

The risk for complications is highest during the first 100 days after a transplant. This is because your immune system is new and needs time to grow stronger. But there can still be risks during your recovery months and years after transplant. "

One academic paper that I read said that over 50% of patients are readmitted to the hospital in the first 100 days following transplant.  I plan to avoid this by adhering to the post-transplant restrictions.  Some of my restrictions that will last until Day +100 or beyond:

- cannot go into public places without a mask

- must stay out of the sun between 10am and 4pm

- must wear long sleeves/hat anytime that I am in the sun

- must wear SPF 30 sunblock if going to be exposed to sun

- bed linens must be changed once per week

- towels must be washed at least twice per week

- must change to a new toothbrush every two weeks

- no gardening, digging in dirt, or touching soil or plants of any kind

- no dusting, vacuuming, cleaning bathrooms

- can pet cats, but must wash hands immediately after

- cats are not allowed to sleep on bed/in bedroom

- no cleaning litter boxes

- no drinking well water; can drink bottled or tap water only

- no eating food prepared by someone else, unless reheated to at least 165 degrees

- no raw or under-cooked meat, cheeses, eggs or unpasteurized dairy products

- leftovers must be eaten within 48 hours or disposed of

- no driving

- I still have my PICC line, so no lifting above 20lbs

- I must cover my PICC when I shower with a glove from hand to armpit

- avoid crowds; no going to public places when they are busy

- cannot be around anyone sick, or anyone that has been exposed to anyone that is sick

- cannot be around anyone that has received a live vaccine within 4-6 weeks

In addition, I still take my trail mix of medications several times each day.  My immune system is being suppressed (by Tacrolimus), so that my new immune system (the cells that they infused me with) can grow without the two going to war.  That means that I am extremely susceptible to any kind of infection - things that your body would normally be able to fight off could attack my body since I have little defense.  To try to keep that from happening I am on several medications that prevent infection.  Daily, I take Noxafil (an anti-fungal), Acyclovir (an anti-viral), Atovaqone (anti-fungal), and am supposed to get IVIG (anti-viral) infusions weekly to prevent infections.  Additionally, I am on a blood pressure medication (the Tacrolimus raises my blood pressure), magnesium (Tacrolimus eats the magnesium in my body), a liver protectant (Ursodial), an acid reducer (Tacrolimus can also cause heartburn), Prednisone (steriod), Compazine (anti-nausea), and my sleep aid -  which I have started again, since I think that the Tacrolimus is the culprit behind my headaches - Trazadone.  Tacrolimus sounds like a nightmare doesn't it?  Well, since it is the medication that is preventing rejection of my new cells, and working to prevent GVHD, it is a necessary evil right now.  I will most likely be on all or most of these medications for at least six months.

Gettting IVIG 10.18.18

Since I've been home, I've found that I can't really predict how I'm going to feel.  I've had headaches when I didn't expect to, been so tired that I've slept until 1:30pm in the afternoon, wanted to go take a walk, but didn't have the energy, and been unable to sleep in the middle of the night, even though I thought that my sleep issues were starting to resolve.  Every day is a new one, and I kinda just have to take it as it comes and not try to make any plans to be productive, since I never know how I am going to feel - if I'm going to have a debilitating headache, or need to sleep half of the day, which is frustrating, but I'm trying to give myself time and grace to heal.

Day +40 Released

Date: 10.23.18
Time: 4:53pm

HGB: 13.9
PLT: 165
WBC: 7.98
ANC: 6.84
Tacrolimus: 21
Magnesium: 1.2

I'm apologize for the silence last week.  I saw the doctor on Thursday, and I fully expected her to release me to go home, and was unpleasantly surprised when she told me not until next week.  It kinda crushed my hopes.  To be fair, she did adjust two of my medication dosages on Thursday, and most likely wanted to monitor to make sure that nothing cropped up, but it was hard to take.  I'm not cut out for city living.  Especially when I'm restricted from going anywhere.

Yesterday, though, I was finally released to come home.  Keith and I waited out the traffic, packed up, and came home late last night.  It's beautiful here.  Its good to be home.

Home Sweet Home (*photo by Keith)

Our Favorite Hiking Trail (*photo by Keith)

I've been feeling a bit of disconnect.  Every time I see my doctors they tell me how well I'm doing, but every day I feel a bit worse.  For about two weeks now, I've had headaches that have been getting worse daily.  Headache when I wake up in the morning that lingers until 10 or 11, and then comes back at 4 or 5.  Headaches that stop me in my tracks where I literally cannot function.  I believe that these are related to my tacrolimus level.  The doctor gave me the okay to try tylenol or a very occasional ibuprofen, which I did.  Neither helped.  She reduced the amount of tacrolimus that I'm taking last Thursday, and it seems like that is starting to help.  I'm now alternating .5mg one day, and 1mg the next, and it seems like the headaches are getting less severe and I'm getting more time mid day headache free.

I'm starting to feel much more fatigued too.  I pretty much slept the entire day on Saturday, and have been taking naps almost everyday.  Good news is that I'm starting to sleep more at night too.  Last night was the first night that I slept through the night without waking up and staying awake for a few hours in the middle of the night.  My prednisone has been reduced to 20mg a day, and I'm really feeling the tiredness and fatigue catch up with me.  My doctor tells me that this is totally normal, and that as my steroid is reduced further, that I will continue to feel tired, but that my blood counts look good, and that it is just my body recovering and making new cells.

Aside from that just enjoying being in my home, sleeping in my bed, petting my cats, feeling the cool air, and seeing all of the beautiful changes of fall.  Oh yeah, and Keith painted my bathroom vanity while I was gone.  How pretty.

"All White Errthing"

So I'm tired with a dull headache, but I'm home so today, is a good day.

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:

http://hollowmeout.blogspot.com/

http://bloodyawesomejourney.com/

http://pattimoonis.blogspot.com/

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

https://www.caringbridge.org/visit/leamorrison

https://www.caringbridge.org/visit/cherylthornton

https://www.caringbridge.org/visit/bjranier

https://www.caringbridge.org/visit/susanleigh

https://www.caringbridge.org/visit/shiraweisbach

https://www.caringbridge.org/visit/shanemyers

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.

https://amletc.com/?s=etc

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.

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. 

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.

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.

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.