Hanging out at the oncology center

{I wrote this a couple months ago and saved it, thinking (of course) that I would come back and fix it. Ain't happening. Moving on.}

If you're wondering, moving and then starting a four-week course of treatment for your auto-immune disorder is a good way to feel really really tired.

Surprise!

My hematologist's office is also an oncology office. So, when I go, I feel two things:

• Very very young
• Obscenely healthy

I guess, technically I am sick. I just don't feel sick. If it weren't for the possibility of hours-long bloody noses and constant unexplainable bruises, I'd think I was perfectly fine. But the numbers apparently don't lie, and my platelet count has not come up to what it was before I had Peter: still low, but livable. They've dipped down to the moderate/severe classification. So, my doctor let me have a year to nurse Peter, which I was thankful for. I weaned Peter in early June, which I was sad and not sad about. Sad, because it's likely the last time ever, and not sad, because he became a biter and it was getting to be less and less of an enjoyable bonding time.

So I went in the last Thursday in June for the first of four weekly infusions of Rituxan. The hope is that it will kind of reset my immune system so I'll be in better balance for a couple of years. I'd also settle for forever. That would be fine. My doctor said I'd not really have any side effects from it, other than during the infusion I might feel tired and achy. (ha.) Also, apparently, it's a chemotherapy drug. Who knew a drug used to break up tumors in cancer patients could also be used for RA and ITP? Oh, the wonders of off-label uses.

Week 1: Got to the office at 10.  Did my CBC before heading over and choosing a recliner back in the corner. Looking forward to being able to sit and read for the next six hours, I had brought several books with me. You know, in case I finished one, or got bored, or maybe I was just giddy at the thought of that many uninterrupted hours. I did not bring snacks or water. I kept my head down and focused on my book, because I didn't want to bear witness to all the other human dramas that intersect in the oncology treatment center. They started me with Tylenol, and then on a drip of benadryl and prednisone. Once that was finished they started the Rituxan. They have to start it slow and then can increase the rate of the drip, once they're sure you are handling it all right. This is the part where I laugh at my ambitious reading plans, because the 50 mg of benadryl made me pass out pretty quickly. I fought it as long as I could, because I had an Erik Larson book on the Lusitania I was really excited to read. I conked out for the next hour or so. When I woke up I felt vaguely itchy. My scalp, and my throat. It took me a while, through my woozy benadryl state, to realize, Oh, I might be having a reaction. When they came around to turn up my dose, I told them, causing a flurry of nurse reactions. They turned off the rituxan, gave me more benadryl, and waited for me to feel better. And I soon did, but all the fluids they were putting in me, and all the benadryl, meant that I really needed to get to the bathroom, and there was no way I could walk there. So I needed two nurses to load me into a wheelchair and walk me past all the old, enfeebled, actually sick people having their chemotherapy, since I had seated myself in the chair furthest from the bathrooms. It felt a little ridiculous. Once I was seated back in my recliner my nurse said, "Maybe you shouldn't be driving yourself home." And I agreed. Once I was feeling non-itchy and they started the Rituxan up again, I again tried to read. I really just wanted to read. But I slept again, and woke, and they made me eat some snacks, and I started to feel better and was able to walk myself to the bathroom the next time. After some more napping my head felt a lot clearer and I decided I didn't need someone to come get me. At 4:30, only six and a half hours after arriving, I was done. I got home about the same time as Levi. I felt tired and a little shaky but thought I was doing pretty well. Linda, though, who had volunteered to watch my kids, looked at me kindly before she left and told me to take it easy. Levi later told me I looked really pale. And so I did. I laid in bed and finally got some good Erik Larson reading time in. The next couple of days I felt really tired but I took it easy and drank lots of water, and by Monday got back to normal living and unpacking.

Week 2

After my CBC I walked into the infusion room to choose a seat. I was scanning the far side of the room for an empty recliner when I heard a surprised, "Hillary!" My grandparents were sitting right in front of me. So, being the wonderful granddaughter that I am, I sat by them. My grandpa comes in every four(?) weeks for six days, for treatment for preleukemia. His infusions only last 30-45 minutes, so I sat and chatted with my grandma as he fell asleep. What grandpa doesn't fall asleep when holding still? We talked, and the woman on the other side of him joined in; a lot of the patients get to know each other if their treatment times happen to coincide. I was fighting the benadryl's effects by the time they were ready to leave. I'm pretty sure my conversation was getting less and less lucid. They offered to bring me a sandwich, but I had snacks, didn't tend to get hungry, and didn't want to bother anyone with obnoxious food smells. I didn't have the same reaction as I had the week before and so was able to get the infusion done a little faster. When I got home it was just about time to leave for DATE NIGHT! That deserves all caps. For my birthday Levi bought me tickets to "And Then There Were None" up at the Caine Lyric Theater, so we had dinner at the Bluebird before the play. It was lovely, although the Bluebird was so slammed we were nearly late. I want to love the Bluebird, because its ambience is so perfect, but it's food is sometimes not the best. It was a lovely night, but I paid for it later. As I continued to be miserable, exhausted and dizzy for the whole next week, I realized I hadn't followed instructions about drinking a lot of water because I'd been out and about. Didn't make that mistake again. (This was also the weekend I painted my chairs; see other post.)

Weeks 3 and 4 were much the same, although each week they were able to do the infusion a little faster as my body was better able to tolerate it.

I recently read a book (Lizzy and Jane) where one sister accompanies another to her oncology visits, and a lot of it seemed familiar. They talked and developed relationships with the other patients. I didn't. For one thing, I was always asleep most of the time. But also, I didn't feel the same as them. For one thing: much younger. But my fight is much less serious. I felt lucky to be uninitiated in such things as joking mentions of trying Rogaine, or talking of overwhelming fatigue and weakness. So I sat in my corner, admiring their good humor, their strength, honoring their fight, and wishing them well.

And I did eventually finish my book.

***

I shouldn't have waited so long to post this, because now I get to write this unhappy postscript: it didn't work. Not the slightest differences in my counts. I'm really wishing medical treatments came with a money back guarantee, because I'm still settling up my bill from July while biding my time, waiting for the Rituxan's effects on my immune system to wear off so we can do the immunizations one has to do before a splenectomy. Also, hoping for a last-ditch miracle. Because my spleen and I may not be getting along, but that doesn't mean I want to get rid of it.