Almost Human

Praise be to whomever! As of Monday, the swelling in my legs is markedly reduced. I have ankles again! The tops of my feet and my toes aren’t swollen! My bruises are fading.  My knees are still pretty bad, which I notice mostly when trying to stand up or walk up the stairs (whose idea was it to rent a house with the bedrooms on the third floor??).  But I know it will improve.  I cannot believe how much better I feel. It’s like a miracle. I will still be on this 20 mg daily dose of prednisone for another 10 days, then will drop down to 15 for a month. But I think the worst of this is behind me. I feel like a new person.

My blood pressure, on the other hand, is still way too high. I decided to be my own doctor and put myself back on the lisinopril—I really don’t think it was the cause of the facial swelling. I messaged the doctor with this information. I don’t think she’s thrilled but she just reiterated that if I should develop any swelling, I need to get to the ER ASAP. She also upped the dose of the newer blood pressure medicine she put me on, yet today my BP was still very high. This is all very perplexing to me. Before it was so well controlled with only ONE med. Now I’m on three, and it’s out of control.  You already know what I’m going to blame. Say it with me: prednisone. But… I’ll keep monitoring it, and the meds will change once I get back to Albuquerque.

I had my second and last Rituxan infusion today.  Of course, the first thing they did was weigh me. I have lost 10 pounds since this past Thursday and 20 pounds in two weeks since my first infusion. See? All fluid from the damn drug. Thank goodness. That was really really depressing.

My hemoglobin was also improved today, up to 9.8 from 8.9 last Tuesday. I always wonder about the variability in lab results from place to place. But hopefully that’s accurate, and it was just the time needed for the Aranesp to kick in. I won’t have any more blood work until July 10 when I go back to the hematology clinic in Albuquerque for routine testing. I’ll do the larger lab order for Dr. A that day as well.

The Rituxan infusion was a bit quicker today. Since I tolerated it well last time, they were able to increase the rate at which they gave it to me. I was still there for about the same amount of time because I hung out in the hospital bed for nearly 90 minutes before they got me started. No biggee. Not like I had any plans.

I can’t say enough about the staff there.  The vast majority of patients in what’s called “the short stay unit” are there for outpatient cancer treatment, so there’s just an added level of care and compassion, from the intake clerks to the medical assistants to the nurses. They do their best to make it as comfortable as possible.

It sort of dawned on me today that the fight for all this is over. What a relief that is. Whatever’s going to happen with this disease and the outcome is going to happen. I have zero control over that.  But I don’t have to be in battle mode anymore. That was so tiring, so frustrating; it was like a second job. But that part’s all over. It almost doesn’t feel real.

I get asked a lot, “How are you spending your time since you can’t go out?” I did work about half the time I was here, so that filled my days.  I also stupidly brought a 1000-piece puzzle of a Chihuly sculpture (if you’re not familiar with his work, google it–and visit the museum if you find yourself in Seattle. It’s amazing). I bought puzzles for Rose and our friend Susie and had them shipped to them. The last time I put together a puzzle, I was probably six.

Here’s the deal. I don’t recommend a 1000-piece puzzle. What a pain in the ass. But I finished it, out of sheer will. Never again. My new motto is “Burn all puzzles.”

The other thing I brought with me to kill time was marble painting supplies, both Japanese and Turkish. I do not possess a creative bone in my body but this stuff is pretty foolproof, particularly the Japanese style (known as suminagashi). When I told Rose and Susie about it a while back, Susie said, “Oh we used to do stuff like that with the kiddos at the preschool [where Susie and I both worked 100 years ago].” That tells you the level of expertise one needs. If a pre-schooler can handle it, it’s right up my alley.  Now what the heck I’ll do with all these “paintings” is beyond me, but it’s fun and relaxing. NOT like a puzzle. Burn all puzzles!!

And of course, there was Netflix, Hulu, Amazon, and my free trial week of CBS All Access! I also watched a really good documentary on Bayard Rustin, who was a major influence on Dr. Martin Luther King’s non-violence approach to civil rights. Read up on him if you have the time.  Fascinating life.

The one project I didn’t get to was going through the 300+ gigs of photos on my external hard drive. I know there are tons of duplicates on there that can be deleted. Oh well. A project for another day.

Tomorrow if I’m feeling well, and I think I will be, I plan on taking a drive just to see some sights around here. You don’t have to travel far to get rural pretty quickly. Then I’ll treat myself to my first and only meal from a restaurant since my arrival here (Mexican, naturally—my favorite)!  Friday I’ll start packing up and cleaning.  Saturday I’ll hit the road for home.  This “adventure” is coming to a close.

And hopefully this will all be behind me. Fingers crossed.

Hemoglobin: 9.8

Burn all puzzles!

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