There just doesn't seem to me to be any rhyme or reason to it. My joints had been feeling relatively well - some swelling, stiffness, and pain, but minor, and inconsistent. Then out of nowhere, last week, literally every day my hands, my ankles and my feet were so, so painful. The outside bottom of my left foot actually felt like it was on fire for hours at a time. I told my doctor that I just don't understand why, and she said that it's my immune response to something. Anything at all could trigger it. I told here that it's been hot, and that I've been getting a lot of sun, despite my best efforts not to (I try to stay out of the sun during peak hours, wear long sleeves, and always wear sunscreen) and she said that for all we know, that could be triggering my joint issues. Seasonal allergies could trigger the GVHD, if I pick up a cold, that could trigger it. There's really no way to pin it down, unfortunately. So, we have elected to go up on my Jakafi. I should be starting 15mg twice daily this week. I am still on 10mg prednisone daily, and my doctor was unwilling to lower my dosage while I'm having joint flares. When we do begin to taper again (hopefully at my next appointment, if all goes well with the higher dosage of Jakafi) we will be going very slowly, and they will only taper me down by 1mg at a time, as I seem to be really adversely effected by the side effects of prednisone withdrawal, even though it seems like I'm taking it so slow. Every time we lower my dose of prednisone, the fatigue is almost unmanageable. Like stop what I'm doing and lay down on the floor to sleep for a couple of hours unmanageable. The ultimate goal is to get me off prednisone completely, but it's going to take quite some time.
I've added another pill to my daily regimen in the past month, as my blood pressure has been steadily climbing, and even at home in non-stressful situations I've been running 146/96. I really honestly used to have good blood pressure, and the doctor told me that she feels like this elevation is most likely caused by the other medications that I am on. So I'm hoping this is just a temporary addition, and that I can wean off this as well, but to be honest, it's not looking good, as I think I'm actually taking more medications than I was when I was initially released from the hospital post transplant.
More joy in my life, I've been noticing a lot of blood when I blow or clean my nose. (Gross, I know.) I haven't really been having active bloody noses, but when the NP checked it out she said that my nasal passages looked so raw and inflamed that she was reluctant to even swab the right side, for fear of hurting me. Convinced that I had picked up some sort of virus, she prescribed my a Z-pac. By the time the results came back (negative - no infection) I had already finished 3 days of the meds, so I went ahead and finished them up anyway. She suggested that I try a saline nose spray, but I am apparently a child, because as soon as I shoot something up my nose I start choking and sputtering like I'm drowning, and by the time I'm done hacking and blowing my nose, I've kind of defeated the purpose of trying to moisten it. They've put in an order for a CT scan, to see if there is anything sinister going on up there. I don't think that there is, but how would I know? Its a huge pain in the rear, but I tell my doctors about anything weird that's going on, stuff that I usually would have shrugged off and lived with in my past life, because that's how people die. I don't have the luxury of ignoring shit, and pretending like everything is fine, because I know that with the medications that I'm on, my immune system is suppressed, so I could be ill and not even know it. So now I'm one of those hypochondriacs that carries tissues in my bra and checks the colors of my boogers. I'm a joy to be around.
After my first phlebotomy, my ferritin level went down to 1509. My doctors want it below 1000, so I had another phlebotomy treatment last month. This one was worse than the first, as the blood just would not come out. My nurse kept adjusting my needle and then closing the curtain and walking away, and I was making literally no progress, and was completely immobilized by the needle in my arm attached to the bag of blood sitting on the scale on the floor. Finally, after I'd been there an hour and a half, she agreed to manually pull the blood out with a syringe, as long as I agreed to drink a cranberry juice. It made me nauseous and sweaty, and a little faint, but I was just glad to have it over with. Every time Keith and I go to UCLA, the ultimate goal is to come home. Phlebotomy days (once a month) are literally 12 hour days with travel time. I pack our lunch so that we don't have to make unnecessary stops, but even so, with travel and appointments, and traffic and treatments, we leave at 6am, and don't get home until after 6pm. So much of life these days is about being a patient. Still.
I remember my grandfather telling me that he had become a professional patient, and I feel like that it what I've become too. We are still traveling to UCLA every two weeks for appointments, and my medication and appointment management take up several hours a week. I didn't think that it would come so early. I thought that I'd have a few years yet. I turned 39 in May.
My hair continues to grow. It doesn't look good, but it is growing some. It is weird straight in the front, and perm curly in the back. At 39 my hair looks like one of the Golden Girls. I suppose I should be thankful that it's Blanche instead of Sophia?
Thank you for being a friend.
I have been so hot lately. I know that I'm in the minority, but I hate the summer time. Where I live, most people don't have air conditioning in their houses, as there's really just no need for it. The hottest we get is low 80's, and that only happens a few days a year, so on those days we just turn on the fan and deal with it. While most of Southern California suffers from May Gray and June Gloom (the marine layer, that usually keeps things cloudy and overcast with cooler temperatures) we, at a higher elevation are above it, so we get bright relentless sun while others in our region sometimes get a bit of a break and a cool off. (That's one of the reasons that we have a solar observatory here.) No public pools for me, as I'm still immune-compromised, so it's just a lot of lukewarm showers, and crying about being hot for a couple of months. First day of July, and I'm already waiting for Fall.
I was seriously terrified to go to UCLA this week with all of the measles quarantines there on the campus. Even though the infected person supposedly only exposed those on campus, and not at the hospital on April 9th, I was at the clinic on April 10th and kinda freaking out about it.
For those of you that don't know, a transplant wipes out your previous inoculations, and it's like you're a new born baby, and aren't able to start your immunizations for a year or so. So I have no protections against measles, mumps, chicken pox, or any of the other things that children get immunized against, and at this point, while I'm still on immune suppressants, especially, I'm not able to get any of those yet. Keith and I are still very careful about hand sanitizing and staying away from sick people, but I can't really help who I am exposed to when I go to clinic. I am very grateful that I didn't go anywhere else in LA (like to get food or coffee or anything) while I was down there on the 10th, as the campus is literally across the street from the hospital and many of the students are out walking around and patronize the same businesses as the hospital patients and staff. I believe that the period when the infection would have shown up by passed on April 30th, so I'm in the clear on that one, thank goodness.
Still experiencing random joint pains, despite my increased dosage of Jakafi. I have been able to reduce my steroids (prednisone) to 12.5 daily, but am still having some joint flares, so the doctors want to leave me on this dosage for awhile, especially since I have been experiencing horrible fatigue. The kind of fatigue where I sleep for 2+ hours in the middle of the day. The kind of fatigue where I can hardly keep my eyes open around 9am and have to go back to sleep, even though I've only been up for a few hours. The doctors are hoping this will regulate itself and that I'll be able to reduce my Prednisone incrementally at my next appointment. I hope so too. Right now the fatigue is almost debilitating. Some days I'm able to get a bit accomplished, and then the next day I feel like a zombie and can't keep my eyes open for more than a couple hours at a time.
My nurse practitioner encouraged me to try physical therapy to help with my joint pain. I went twice. The physical therapist pretty much told me that they could give me some exercises to do, but that if the areas of pain weren't consistent (sometimes my hands hurt, sometimes my ankles and toes, sometimes neither and sometimes both) there wasn't much else they could do besides some targeted massage.) Last time they dipped my hands in warm wax, and then massaged my hands, which felt nice, but with my copay, it was quite a bit more expensive than a manicure, so at this point physical therapy isn't beneficial enough for me to justify the cost.
I also learned in April that my ferritin level is too high. I thought that was strange since I didn't require any red blood transfusions after my transplant, like many people do, and only had one platelet transfusion, but apparently my iron level is elevated from all of the blood transfusions that I had back in 2015/2016 when my counts had a hard time recovering while I was taking Sprycel. Apparently, your body does not have a mechanism for getting rid of excessive iron, so my ferritin level was above 1800. (I believe normal for a woman is below 200.) So how do they fix this? A good old fashioned blood letting. No joke. In 2015 they put a bunch in, and now they need to let a bunch out.
I had my first "phlebotomy" on Monday. When the nurse came over with what looked like a produce scale from the grocery store, I was pretty sceptical, but apparently, that's how it's done. They started an Iv line, and then let me bleed out a pint or so (500ml). Seriously.
They have this fancy high tech machine to find a vein in your arm, but then they measure the amount of blood removed with a mechanical scale? It's wild. I suppose I should be happy they don't use leaches. They expect each phlebotomy session to lower my ferritin (iron) by 100-200, so I'll most likely need another 3-4 more sessions, as they'd like to get my ferritin below 1000. I'll be going in for blood letting once a month, until they can get my level where they want it to be.
Besides that I've been having terrible hot flashes. I crawl out of bed at night to lay on the floor, I'm so damn hot. The doctors believe that this is most likely caused by chemotherapy induced premature menopause. Besides the hot flashes, though, I find that I am extremely heat intolerant. It's been unseasonably warm here, which for us means 70 degrees during the day, and I cannot deal. I can't be outside at all if it's over 65 degrees or I feel like I'm cooking. Not sure how I am going to cope this summer when it really gets hot.
Aside from all of the medical stuff, the electric company tried to burn our house down back in March, when their equipment failed, and the neutral connection at the transformer at the power pole came loose and sent a power surge through our house, cooking all of our 110v appliances, including our heater (while the nights were still sub-thirty degrees), and made our dimmer switches smoke in the walls. Thank God Keith is familiar with electrical systems, and was able to minimize the damage as much as possible by turning off the power to the house at the panel and at our pedestal, and was able to replace the burned up switches, after the electric company came out and reconnected us.
Thank goodness we were home at the time, or the damage could have been much more substantial. We, however, had to get all of our appliances fixed, and had to replace the fridge, as it was a total loss (it smelled like burning electrical wires when you opened the door) and we are still waiting for the electric company's insurance to reimburse us. And I'm like "good god, really, what else?" and then our new TV lost a pixel all the way from the top of the screen in a line through to the bottom, so now I just keep my mouth shut and try not to tempt fate.
I've been hiking as much as my ankles will allow, and the wild flowers are beautiful this year after all of the rain and snow we've gotten.
Super Bloom. (* Photo by Keith)
I've only been able to sustain a weight loss of 7 lbs since the beginning of year, which is disappointing since I feel like my efforts are not reflected in my results. (I deny myself things on a daily basis, and yet...)
My hair is also new and strange every week. I had to buy my first bottle of shampoo this month, since August, so I'm definitely getting some growth. This week that growth has turned a bit curly, still long at the crown and sparse on the sides, with a greyish spot right up front. Keith calls it my "undercoat". I'm hopeful that next week's style is a little more attractive, as I'm still wearing my wig and a beanie when I go out, and what with the warmer weather, and my own temperature regulation issues, it's soon going to be legitimately too hot for that. The self image stuff is hard to handle. When I look in the mirror, the person that looks back at me is nearly unrecognizable. Its hard to handle.
My doctor returns from maternity leave this month, so we shall see if she wants to change anything regarding my current treatment, but the NPs and PAs really do a fine job, so I doubt it.
My birthday is this month, and there are still so many things that I am restricted from doing, so I'm just going to consider this a year of transition, and hope that next year is better. My birthday wish this year is for moderate temperatures, less over-all puffiness, and rapid hair growth. A girl can dream, right?
After much to-do with the insurance company and pharmacy, I finally started Jakafi. And it seems to be helping. I started on a dose of 5mg in the morning and 5mg at night, and my fingers feel somewhat better. The doctors have decided to increase the dose to 10mg AM and 10mg PM to see if it can make me feel MUCH better. It took literally four phone calls back and forth to the pharmacy, conferencing in my insurance company, and back to the doctor to actually get that prescription filled, and I went without the Jakafi for four days in the mean time. And my left ankle started hurting so badly, that it felt like I was injured. I've been back on the higher dose for four days now, and my ankle still feels like it's sprained. The joint is sore to the touch, and sensitive to movement, but I *think* it is starting to get better, because a few days ago, I could barely walk on it without wincing in pain. My fingers have been a little stiff too, so I'm hoping it's just a matter of the drug making its way back in my system, and hoping that my joint issues are not progressing.
I'm still on prednisone, and I hate it. My dosage was reduced from 20mg to 15mg at my appointment last week, but I still am feeling prednisone side effects pretty hard. It makes me literally feel like I'm starving. In the middle of the night. I wake up out of a dead sleep, pantry eat something - usually a handful of trail mix, or chocolate chips, or a spoon of peanut butter, pound an entire diet coke in about 3 minutes - and then go back to bed. It's absolutely ridiculous, and super counter-productive to my whole trying to lose weight mission. I've started putting a banana or an apple on the shelf in the pantry, and pre-tracking my midnight snack into my daily calories, but the hunger will not be assuaged by fruit.
The sleep is still fucked up too. Maybe improving a little bit, since I rarely lay awake for hours, but I do usually wake up at 4-something AM, and lay there til what I deem is a decent hour to get up, which in my world is 5 AM. I'm only sleeping about 6ish hours a night, and I feel tired all of the time.
And my face. Oh, my poor puffy face. I'm growing some very floofy, odd colored hair, but even that exciting milestone is eclipsed by the size of my round face.
What's your name, little boy?
Fat Face Mcgee'n it
I don't know what I'd envisioned regarding my hair regrowth, but I promise you, this isn't it.
Sometimes I feel like I'm not making much progress, because I'm still taking most of the medications that I was taking when I was released from the hospital (minus the IVIG infusions). Some of the dosages have been reduced, but at almost seven months post transplant I am still on:
I also am still traveling to UCLA to see the doctor every two weeks, as my blood counts still require close monitoring (especially on Jakafi, as it can cause lowered blood counts) and my symptoms are being evaluated, and my medications are constantly being adjusted. The doctors tell me that I am doing incredibly well, which makes me feel very sorry for the other transplant patients that they see that aren't, because I don't feel incredibly well. I can only imagine how they must feel.
Hemoglobin was a little bit high during my last round of tests. They said that it could be from dehydration, but that it bears watching, and that they will keep an eye on it.
Being on steroids is so hard. On the one hand, I believe that they do have a positive impact on my joint issues. They don't eliminate the pain, but I feel like they might help alleviate the inflammation a tiny bit. (I was also prescribed a topical ibuprofen gel...it does absolutely nothing.) I was put back on 40mg of prednisone daily at my last appointment, and have tapered down to 25mg. Don't get me wrong, my fingers are still stiff and sore, and the joints in my toes, feet, and ankles can't tolerate much activity without pain, but I feel like the steroids are keeping it from getting much worse, as I haven't had very much progression into my other joints, like elbows shoulders or knees yet. So far the pain and stiffness is keeping to the periphery, so that's better than nothing.
Downsides are that, once again, I can't sleep at night. I spend hours lying awake, alternately staring at the wall, or the inside of my eyelids, just hoping that I can get more than 4 hours or so. My face is starting to fill out and look a little jowly and round again (which I hate), and I've gained back one of the lbs that I had worked so hard to lose. Just trying to remember that they are hopefully just temporary, as my Drs have decided to try to see if Jafiki (ruxolitinib) can help with my joint issues. I should be starting it in the next couple of days, and I'm hoping that it helps with my chronic GVHD. If it does, then we can discuss tapering off the prednisone again.
And by the way, how bummed am I to have developed chronic GVHD when I had literally no signs of acute GVHD in my first hundred days post transplant? I thought I was home free. While I'm thankful that the manifestations of GVHD have not been severe, I'm also concerned about progression, as my symptoms literally came out of nowhere, and are not completely alleviated by steroids.
Adding to my medical anxieties, I learned at my last appointment that the nurse practitioner that I have been seeing since I was released from the hospital is leaving UCLA. On top of that, my doctor just went on maternity leave, and won't be back until May. So I'm feeling a little bit abandoned. I have no doubt that my new NP, and my interim Dr will be more than capable, it's just a bit difficult having to form new relationships, and explain all the nuances of my medical history to new people.
My blood counts continue to look good, but the joints in my hands and feet continue to ache. I have been back on 10mg of prednisone (steroids) for almost three weeks now. They do seem to help some, but they don't eliminate the pain and stiffness. They've done blood tests checking for arthritis and inflammation, as well as some for graft vs. host disease, but nothing has come back red flagged...meaning nothing is off the charts high. So they don't really know why. All I know is that door handles are difficult, I struggle to open jars and bottles, and tasks like typing...remaking the bed...grasping anything heavy or awkwardly shaped are all very painful, and difficult. My dr. mentioned perhaps switching me off steroids and onto a medication called Jakafi, as it has been known to help with GVHD, but if my blood tests don't support that diagnosis, I'm not sure if I'll be able to get insurance approval.
So I'm not sure what the game plan is at this point. The steroids make me hungry, occasionally sleepless, and give me a dull headache (not to mention long term steroid use has major negative impacts on bone health and can cause bone degeneration and osteoporosis.) I've tried Ibuprofen, as well as a very expensive ibuprofen gel, at the urging of one of my doctors to help with the joint pain. Neither have helped. All I know is that my joints ache like they never have before in my life - and it's not the weather (or my age...I would hope, at 38).
In recent testing, my vitamin D level also came back very low. They are having me take 50000 IU of vitamin D weekly for 12 weeks to try to bring it up to an acceptable level. The doctor said that low vitamin D could play a role in my fatigue, and that it may get better as my level increases. I've taken 3 doses so far, and I'm not running any marathons, so we'll see if it gets any better. I had an appointment scheduled with an endocrinologist to check that my adrenal glands are functioning correctly, but had to cancel when I went back on prednisone, as the testing cannot be done accurately while on steroids.
Good news is that my BCR-ABL test came back (this is the test that I've been having ever since i was diagnosed that tests the "cancer level" for CML). Before I went to transplant, my number had inched back up over 5%. My recent BCR-ABL was negative. Meaning no cancer. No leukemia. For the first time in almost 5 years, I can say that I don't have cancer. At all. Most CML patients in this day and age never get to say that, so in that respect I feel very fortunate.
As much as I hate to say it, I have to admit that I feel like a horrible and ungrateful person most of the time, because to be honest, I felt physically better before my transplant. I felt physically better with low levels of cancer, than I do now almost 5 months post transplant. There it is. No caveat to add to that, no "well at least..." I'm happy that I don't have cancer any more, but I'm sad about the things that treatment has cost me.
I've been trying to lose some of the weight that I seem to have acquired. (No one ever tells you that's going to happen. They tell you about the chemo nausea and weight loss, but they never tell you about the medication weight gain.) It's coming off twice as slowly as it went on. I purposely gained 15 lbs before I went into the hospital, thinking that it would help me once chemo killed my appetite. That never really happened for me, and with three months on high dose steroids, I gained another 15 lbs. In the past 6 weeks, I've managed to ditch 7.5 lbs, but it's been a struggle, especially since I'm on steroids again, and they make my stomach think my throat's been cut (aka I'm always hungry), and exercising a lot has been difficult since my ankles and toes start killing me after about half an hour on my feet. Struggling, but trying hard.
Hair is also coming in a bit more. Every week I can see a little less scalp, so that is a good thing. Very soft, and kind of dappled in color. I've heard that it often comes in curly - like Richard Simmons curly - after chemo treatment. So far, laying pretty flat in most spots, so I hope to dodge that bullet.
Almost real hair
Still traveling to UCLA every two weeks. Sometimes (especially when the weather or traffic is horrible) it feels like a waste of time, since my doctors don't really know what to do about my recent joint issues, and according to them, compared to other transplant patients, I am doing "so, so well". I don't want to be compared to other patients, though. I want to be better than *I* was before. Maybe I have unrealistic expectations.
Someone asked me a couple of weeks ago if I'm bored. I'm not. I'm not even close to bored. I feel so exhausted all of the time, that making it through my daily tasks right now feels like an accomplishment. Just showering and changing my clothes, or changing the bed sheets and doing a load of laundry, make me tired enough to need a nap. I've mentioned my fatigue to my doctors and they think that I should be feeling better/more energetic by now. If things don't improve in the next couple of weeks, they may want to send me to an endocrinologist to make sure that my adrenal glands are functioning correctly.
My blood counts had actually improved from their downward trend in December, and all of the biggies were back within normal range when I saw the Dr. on Jan. 2nd:
Something weird is going on with my joints in my hands/feet, though. It started on Christmas, and I felt like maybe I had just done too much that day, and that my hands were just fatigued...but then it didn't get better. The joints in my fingers are very sore and stiff - almost like I have severe arthritis. The thumbs are especially painful. I have a hard time opening bottles and jars, and they feel weak, like if I needed to pick up or hold something large or something heavy, they would fail altogether, and I would drop it. The doctor tested my uric acid levels to make sure it wasn't gout, tested my tacro level to make sure that it wasn't too high, and was otherwise stumped as to what it may be causing my discomfort. I told her that I felt stupid for mentioning it, but she noted that my liver enzymes were high (for me) and that my potassium was high - so there was definitely something going on there, they just don't know what yet. She said that they could send me to a reumatologist, but that it was generally unhelpful. I asked if people get GVHD in their joints, is that a thing? and she told me that it does sometime manifest in joints and connective tissues, but that it generally causes a stiffening and limits the range of motion, instead of causing pain.
As of my last appointment, she told me to go ahead and take occasional ibuprofen for the discomfort, but that if it didn't get better, they may want me to go back on a small dosage of steroids to see if that improves the situation. (Not a fan of this plan. Finally starting to see improvement from some of the awful steroid side effects, like not being able to sleep, wanting to eat everything that's not nailed down, and my lovely moon face and camel hump has finally receded a bit, so I'm not too keen on inviting all of those things back into my life.) It's been almost two weeks. My hands still hurt, so we will see.
Finally growing a little peach fuzz on my head. It's strange colored, and like a fuzzy baby duck. I don't think that I was prepared when I lost my hair for how long it would take to start growing back. I am still very bald. You can still see my bare head through the little bit of hair that has decided to grow. It's been four months since I lost my hair, and it isn't coming in very quickly or very evenly. The sides of my head are still quite sparce. I will be wearing hats for quite some time.
(Before anyone wants to go and tell me how good I look bald, check yourself. Imagine how you would feel being bald for 4+ months, not by choice - especially when you've gained 15lbs from steroid hunger and the full body view looks more like Shrek than Amber Rose. )
I'll be seeing the doctor again this week. At my +100 day appointment I was told that my tests came back < 97% donor - or donor to the limits of the test - which is great, but at my last appointment, the doctor told me that more of the tests had come back and that one of the cell lines - my T-cells - testing came back 90% donor, 10% me, so they'll be continuing to test and monitor this every 4 weeks or so to check my chimerism.
Still keeping myself very isolated. Whenever I do venture out, I'm shocked about how icky people are in public places. Way too much coughing and snarfling - I think I physically recoiled when I kid sneezed on his mom, behind me, in line at Walgreens last week. I think I'll just order as much as I can online for home delivery. Heading out to the store for a sale on toilet paper is just not worth it. Getting sick terrifies me right now. Stay well. I plan to do the same.
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.
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.
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.
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.
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.
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.