On With the Show

I was supposed to see the doctor today, but I just couldn't make myself do it.  The weather people had been calling for a snowstorm since last week, but thought that it would be fairly weak.  I'm okay driving in a little bit of snow.  What I'm not okay with is putting chains on my tires to get off the mountain, taking them off once I get down-the-hill, (in the possible rain), then driving the rest of the way to UCLA, having lab tests, an appointment, and getting vaccinations, driving most of the way back in traffic and the rain, and then having to lay on the ground and put my chains back on to get the last 20 miles home.  Nope, not okay with that. 

I've only actually driven myself to UCLA and back again twice since my transplant, so I wasn't up for an ordeal.  So I rescheduled.  I've been avoiding seeing the doctor and have been seeing the NP instead, and she has insisted that I need to see the doctor at least every third appointment....so it looks like its almost a month between appointments for me this time, as, what with holidays and such, the doctor didn't have any openings until the end-ish of February.  That's okay.  I do pretty okay on my own most of the time.  Oh, and we got eight inches of snow, so I'm glad I had the foresight to cancel early.

I've been undergoing testing extravaganzas with my dexa bone scan - which was ordered to check for osteoporosis - since I have been on prednisone for so long and it can cause bone loss.  Came back all good.  I've had an eye exam to make sure that my eyes are still producing tears.  You know how they test that?  They shove little litmus paper looking things in each one, tell you to close your eyes, and see if they water, with a foreign object stuck under your eyelids for five minutes.  Seriously?  Seemed a bit barbaric.  Mine watered adequately. 

They also gave me an eye exam (yay 20/20 vision in both eyes), and dilated my pupils, which I wasn't counting on.  The only other time that Keith didn't drive me to UCLA, and they dilate my freaking eyes!  I came out of the office, and I'm like, well, this is okay, I can still see okay.  And then I tried to look at my phone to see how long eye dilatation lasts.  Oh hey, up close I can't read or see a fucking thing.  Not so good for driving.  Not to mention the fact that I look at myself in the rearview mirror, and I look like an anime character with huge blown out black pupils.  "Oh no, officer, I'm not on any drugs, I promise."  Yeah right.  So I ended up sleeping in my car in the parking garage for a few hours before getting on the road.  The decision to drive myself was a poor choice on my part, I've just been trying so hard to give Keith some semblance of a life back, instead of having to be my chauffeur all of the time.  Bad idea this time around. 

Lets see, I also had an x-ray on my left ankle, as, no joke, I feel like it is sprained or broken most of the time.  No fractures or any sign of significant osteoporosis.  So it just hurts.  Which sucks.  I think my doctor put it into words best the last time I saw her: my CGVHD can't be measured by tests, it's mostly just measured by the way I'm feeling, which is so hard for me.  I want something that can validate it.  I want something, a test result, something that I can point to and say, "Look, see, the measure of my pain is right there.  It's a six or seven on the Richter scale, and this proves it."  Without scientific evidence, I feel so invalidated.  Keith was helping my put a TENS unit on my foot a few weeks ago, and noticed that it was incredibly swollen compared to the other foot.  Everyday it's incredibly swollen for no flipping reason, except my donors cells attacking my own, but I shove it in my boot, and carry on anyway.  Its entirely frustrating.  And it's not getting any better. 

One perk to keeping on keeping on: I did get to see these guys, up close and personal on one of my walks a couple of weeks ago, so that was neat.

Wild Burros

They tested my chimerism again.  That's the test that tells them what percentage of my blood is my donor, and what percentage is my own.  The me that used to be is gone.  I'm all donor.  Which is good, I guess.  After all, that was the goal.  Oh, and no CML.  The BCR/ABL test came back completely negative.  Excellent.

What is not excellent is the fact that my hemoglobin/hematocrit continues to be high.  I think that my doctor abandoned the idea that it is high due to living at high altitude, as my erythropoietin level is low normal.  Erythropoietin is the hormone that tells your body to make more red blood cells.  Generally if your body thinks that you are oxygen deprived - because you live at high altitude, or you have sleep apnea - your erythopoietin level will be higher, as it is sending a signal that more red blood cells are needed to carry oxygen.  Covertly, my doctor tested me for the JAK2 mutation.  It came back negative.  Why is this significant?  My doctor wanted to rule out a blood disorder, known as Polycythemia Vera.  Ninety percent of people with polycythemia vera have a JAK2 mutation.  I do not.  Just to be ultra sure, I had a bone marrow biopsy at my last appointment.  My NP emailed me to let me know that the tests were normal, but I haven't had a chance to discuss the results with the doctor yet.  So at this point I have polycythemia of unknown origin, which means that I have an elevated red blood cell count, or more accurately, elevated hematocrit, and they don't know why.

Having a higher than normal red blood cell count is not ideal, because it makes your blood thicker, making you more prone to blood clots, which could lead to heart attack or stroke.  So, thick blood equals bad.  So even though they don't know why I have it, they still may have to treat it, and one of the most common treatments, is - my least favorite - phlebotomy.  FML.  It is absolutely ironic that less than five years ago, my body couldn't produce enough red blood cells to keep me going, and I had to have blood transfusions every four to six weeks, and now it's making so many that they are going to have to bleed me.  Is this some kind of cosmic joke on me, or what?

I'm down to 4mg of prednisone, and I'm thinking about taking myself down to 3mg this week.  The fatigue is still ridiculous.  Daily naps are still needed, or else I'm falling asleep by 8pm.  The tacro shakes are back a bit, and my levels have been all over the place, and since I'm on a relatively low dose, they just leave that alone for now.  I asked when I can get my measles (MMR) immunization, since there has been another outbreak, close to UCLA, and was told that they don't give them until I'm off of immune suppression completely for at least a year.  With my GVHD joint pain flares, that doesn't look likely any time soon.  I've been getting headaches, which is unusual for me, but with the litany of issues I have piled on top of the numerous pills that I take, it's almost impossible to isolate any one cause.  So, I treat them by swallowing more pills.  (Ibuprofen.)

Hair is still bad.  It looks like I left it under the iron too long.  The front is just so damaged looking.  Still taking biotin, and I think that its beginning to grow a little longer, it just does not look any healthier, even though I do deep conditioning treatments a couple times a week.

Even frizz ease cant help this mess

Still wearing hat and wig in public.  Putting on the wig, putting on the show, is exhausting, so I just mostly don't go out in public.  Which is fine.  The dogs on my walk route, and the burros in the forest don't mind if I don't have any hair/have ugly hair as long as I have cookies in my pocket. 

Day +232 Transitions

Hgb: 14.7
Plt: 185
Wbc: 6.43
Anc: 4.15

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.

High tech.

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. 

April 2019

March 2018

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?