5 May – limbo, day 1

1. Dr. Santiago, who’s willing to fight for his patients. God bless him.❤️
2. Rory, who last night volunteered to go back to Liquid Web just so we could have better health insurance (Blue Cross Blue Shield rather than United Healthcare). I really don’t know if he was serious – it would break my heart to see him take a significant step backward for my sake.
3. A relatively pleasant day today, because I’m going to have to get myself down to San Antonio and back. I told Rory not to worry, that I could drive myself, and while that’s true, I still wish I felt slightly stronger.

Bbblllaaaaaahhhhhh…. I slept very poorly last night. I awoke around 1:30 to use the toilet and came back to bed sleepy but that didn’t last for long. The worry over our stupid health insurance company crept in and soon I was wide awake and thinking of abandoning all hope of rest. I very nearly got out of bed but fought through the worry and was finally able to relax enough to snooze again. Unfortunately, the damage was already done. I’m now blibbering. I’ve had some breakfast (even some coffee, which I’ve been trying to stay away from) and I’m thinking of leaving a bit early so I can grab some lunch at my favorite little Indian restaurant before heading over to Dr. Santiago’s office. I have NO idea how long it will take once I get there because I have to wait to see Dr. S and then there’s the bone marrow biopsy, which may or may not happen depending on whether or not the scheduling department has been able to find a time slot. This could get interesting. Thank goodness a good friend gave me two books to read. Those will come in handy, as will the newest issue of National Geographic.😊

Welp, I have mostly good news, although my bone marrow biopsy has been postponed until my hemoglobin numbers climb a little. My other numbers are a bit better but overall, they’re still low enough that Dr. Santiago wants to wait a bit longer. So, here we go. Rory phoned the insurance company this morning and was told that, no, coverage had NOT been denied and that I was cleared for inpatient treatment at Methodist Hospital. Soooo… if, when I eventually get the biopsy, the results show that I’m once again in remission, I’ll be hospitalized again and continue my chemo. Here’s where things get a little weird, though: I may be a candidate for a bone marrow transplant, but in the meantime Dr. S is talking about a type of vaccine that is administered on a 24/7 basis, which basically means that I’ll be wearing a little fanny pack holding a type of small pump that will deliver the medication through my port. I’ll need to be hospitalized for the first 7-10 days while starting this type of treatment due to the risk of side effects and possible allergic reactions. Trust me, you do NOT want to know what these are. Let’s just say, I sure as hell hope I don’t have to experience any of them! Dr. S seems to like this approach more than the more conventional chemo because there will be fewer long-term side effects, even taking into account the possible issues that the new drug may introduce. I have no clue, I’m just along for the ride. Wheeee…..

Oh, I forgot to mention one thing. I’ll be able to go to the Texas Oncology office here in town for my blood tests so I won’t have to drive all the way into San Antonio every time my cell counts need checking, so that’s a bit of a relief. However, if it’s decided that I’ll be doing more outpatient treatment, I’ll have to make the drive. The office here in town doesn’t treat leukemia patients. We’re a strange, dangerous breed apparently.😄