Thursday, December 6, 2018

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.

Saturday, November 17, 2018

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.

Saturday, November 3, 2018

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.


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.

Friday, October 26, 2018

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.

Tuesday, October 23, 2018

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.

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.