Well, Round 4 (b-block) has definitely been harder and taken me to much lower points of fatigue, left me with much lower blood counts, and for longer than I’ve had before. It seemed like the height of luxury to leave the hospital after the last round on a Friday night and go to a party on Saturday night for 2 *whole* hours and for brunch last Sunday and a birthday party (whispers: at a bar!) on Monday before my immune system started to crash, because when it crashed it crashed hard so I was home bound for most of the week. Since Thursday I’ve had as low as 6 platelets (I’m up to 11 today) and an undetectable (< 0.3) white blood cell count (I’m up to 1.0 today). Normal platelets are 150-400, Normal WBC is 4.0-9.0.
My dad came into town Sunday night to prepare for the hugely important stem cell collection we had planned for Monday morning to set up for the stem cell transplant that is now (hopefully) scheduled for the end of June. After a breezy suggestion that I take my temperature after dinner, we find a 100.6 reading which lands me a three-day prison sentence, errrrr, “unanticipated hospitalization,” for “neutropenic fever” until my cells come back to a “reasonable level.” Yes, you correctly pictured me doing sarcastic “air quotes,” grimacing, and sighing with disgust. (While I’ve been known to talk with my hands, I defend this choice as I infrequently make such a gesture.) Nevertheless, stem cell extraction didn’t happen on Monday and may not even happen tomorrow (Wednesday), and of course, I FEEL FINE! Well… mostly fine… fine enough that I’d be ok on my own damn sofa. Fine enough not to have people come ask how I’m feeling and have I had a bowel movement yet at 3:00am! I mean, sure I’ve got a few beautiful little spots and bruises on my legs called “petechiae” from having extended time with low platelets… and a lovely little “GI problem” that makes me feel like I’m getting “stabbed” when I sit on it wrong… but it’s nothing that I can’t handle on my own right?
Grrrr! I am so mad about this! I’m supposed to bounce back faster than this! Why won’t my immune system just cooperate dammit?!? I don’t just miss appointments, especially ones like a stem cell collection that would speed along my progress through this dreadful house of horrors. I hate to have any part of my body defaced even for a brief period of time, this is why I have never darkened the doorway of a SuperCuts… if you wikipedia’d “petechiae” you know what I mean, though my case is much less severe than what is pictured. On Sunday I refused to pack more than one t-shirt and one pair of underwear for this visit since I didn’t plan to stay longer than overnight… and now I have to get my dad to go into my underwear drawer and choose clothes so I can shower and not stink anymore. Great.
During lunch today I learned that I have decided to take my anger out on the anonymous unhealthy public at large with loud comments on behavior. Like the hate stare and forced cough I gave from behind my facemask to smokers sitting just on the other side of the no-smoking sign outside of the hospital. Then there were the “persons of size” who choose to take an elevator up one floor carrying their fried cafeteria lunches who got a heavy sigh and an incredulous “Really? One floor? Were the stairs broken? Maybe you’d lose that waddle if you walked more… fat ass” in a completely normal tone of voice as they walked out of the elevator.
Thankfully my poor “victims” had waddled out of earshot by the time I trailed off with my final insult and my dad was there to shame me for my inappropriate and rude hostility.
I had a pretty tremendous Reiki session on Wednesday that released a lot of the anger and pain I’ve felt through several of the procedures I’ve had during treatment, namely the negative sense memories of the spinal tap and bone marrow biopsy. What a relief that was to finally let go of something I wasn’t even aware I was holding on to. I tend to be skeptical of lot of that “woo woo” kinda shit, but this was like getting some kind of spiritual enema and I highly recommend it as a supplemental therapy to whatever kind of work you are doing on your body/mind. I’ll even use the word “cathartic.”
I’ve had others offer support in ways that I’m not quite sure how to gracefully accept or respond to. It seems elitist but in some cases, particularly when I’m angry or sick, I need emotional support that is quite sophisticated and tends to be best provided by mental health or spiritually minded folks. For those people in my life who I adore but aren’t in a position to give me what I need or that I think might trigger my caretaker personality, it’s kindof awkward finding kind, respectful, and creative ways to say “no, not now, I’ll call you when I’m ready to.” Not that my friends are all messy and need caretaking or that to be a good listener you must have graduate training in psychology or divinity. Far from it. Some of the messiest people I know have Ph.D.’s and the most enlightened were informally educated, my shortlist of supporters reflects this diversity. It’s just that some relationships were designed to have high intensity, some are meant for levity, and most have room for both. It just so happens that right now is pretty intense for me and as much as I want fun, it’s hard to say “hmm, love you, mean it, but not right now boo, call you later” so I hope that they stick around for when I’m better and I’m able to be more balanced.
And then there are the offers of pity that are clearly self-serving, communicating their own needy unresolved trauma masked behind a sense of superiority because they survived a “similar” yet completely unrelated situation. Those are pretty easy to decline through forced smile and a polite yet snarky “thank you.”
During the week I’ve had some very kind close friends spend time with me at the outpatient infusion center while I wait and wait and wait to get chemo and platelets and bags full of red blood cells. They let me know that I’m loved and known and can rely on my relationships for support. I’m learning to appreciate the importance of waiting, to find the action of creating life in the illusion of inaction that is waiting. That’s really what I’m doing, even this very minute, creating life. Creating stem cells, the smallest particles of human life, that can be harvested and used to preserve and protect my life. Since I’m somewhat of a healer in my normal life, these are very important cells because they will be used to heal others. My stem cells are my children and their legacy is what gives this moment its meaning, especially since they are the only biological children I will ever have.