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?