Oy vey. Yeah, so the Rituxan was awful.  It didn't make me feel better at all.  Made me feel like I'd regressed, actually, as I was completely exhausted for the entire four weeks that I was receiving it, and made me nauseous days after my infusion.   Rituxan in June My pain was getting worse, and more widespread.  My knees were aching, and my hips.  I had trouble getting up from low chairs - my knees were just refusing to cooperate.  Left foot was still my most painful, but there wasn't a day that I felt good.  That's a really hard thing.  ..read more

You know, I'm actually alright with staying home most of the time.  This "shelter in place" mandate really hasn't changed my life very much, except that I'm back to wearing a mask when I go out again, which is ok with me.  Unfortunately for me, the approval for the Rituxan treatment was approved by my insurance.  And I totally considered putting it off - but it took over two months to secure said approval, and the approval expires in the second week of June.  Since I need four infusions, each a week apart, I made the decision to begin the treatment 3 days after my 40th birt ..read more

So I agreed to the Rituxan, but I made the stipulation that I didn't want to start until after the majority of the snow season had passed.  My joints have been getting worse.  My wrists hurt, and my foot /ankle hurts so badly, that it wakes me up at night.  Any time I'm sedentary for any length of time, I get very stiff, and it's hard to get moving.  So, I agreed to try the Rituxan.  I was to begin on March 30th, 2020, but due to the corona virus/covid19 pandemic, all of that is currently on hold.  I haven't been to UCLA since the last week of February, and from the look of things, it will be ..read more

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 ..read more

Yikes.  I've been meaning to update for quite some time, but have been having the hardest time finding the motivation because I feel like such a whiner.  It's one thing to be a whiner to Keith and to my doctors, but a much larger thing to the public at large.  I didn't realize that it had been quite so long, though, and I apologize to anyone that was concerned for my well-being. Picking up kinda where I left off, I tried the Ritalin and it was a failure.  It made me feel angry.  Like really angry.  Like heart pounding, flushed cheeks, rage.  I suppose that it could have been situational to th ..read more

Once again, whenever I make plans, everything seems to go to hell in a handbasket.  Two days after my transplantaversary, I broke out in a skin rash.  At that time, I had just gone down to 7mg on my prednisone, stopped taking Jakafi, and started taking Imbruvica, so I didn't know if I was having an allergic reaction to the Imbruvica, or if I was developing skin GVHD.  It started with my scalp itching, which I didn't initially pay any attention to, as I keep my hair squished under a hat 90% of the time, and thought that it was just hat itch, but then, my neck, arms and chest started to look blo ..read more

HGB: 13.3 Platelets: 142 WBC: 2.30 ANC:  1.19 Well, looks like I made it.  It's officially been one year since my transplant, and I didn't die, so statistically, I'm doing great.  Medically, I'm doing ok.  Realistically, and functionally, however, life is miserable.  In one year, I have successfully exchanged one chronic disease for another, more debilitating one.  I went from being a highly functional human being, to a person that can't even take a shower without having to rest afterwards.  I went from taking one daily medication, to taking over eleven, every day, for the past 365 days ..read more

HGB: 13.7 Platelets: 232 WBC: 4.30 ANC: 2.39 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 tha ..read more

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 thing ..read more

Blood Counts: HBG: 14.8 PLT: 145 WBC: 5.63 ANC: 3.73 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 ..read more