The Frustrating Week did Turn Around

9/30/23

Everything is good – really – but it’s been a bit of a frustrating week.

Because of the chemo and the way it works, I have low hemoglobin and platelets right now – all expected. Monday both were really low, and the Doc ordered blood and platelet transfusions. Wednesday afternoon I got 2 units of red blood and then Thursday afternoon got a unit of platelets. (Not without some drama of trying to get those appointments.)

Of course, hemoglobin carries oxygen from your lungs to the rest of your body. So, when the HGB is low, I will get physically exhausted just by walking around the house or taking a shower (seriously, I have to rest after showering!). Without enough platelets, my blood won’t clot, and I bruise a lot and could bleed out with a cut or nick. I’m not even supposed to floss right now because of the risk of bleeding and the difficulty of stopping such a mouth wound. Anyway, it all worked out in the end and I’m good until the process likely repeats next week.

Jumping to the top question I see from my callers, no, I still don’t have my car. I did complain to the shop at length and with details on Thursday (“I delivered the car to you on Tuesday September 5 with the promise it would be done on Friday September 15, but no, you have repeatedly …”), with no luck. Shrug, what can you do? Where we’ve left it with the shop is that they will provide me with a rental Monday if the car isn’t done over the weekend.

My theory is that the auto body shop prioritized other customers/insurance companies over me, and I’m trapped now. Except for the fact that I’m annoying by calling every morning and sharing my life story, there is no reason to get my stuff done over someone else paying more or guaranteeing more business. I’ve never used an auto body shop before, odds are I won’t ever again, so they aren’t really looking to build up a good relationship with me. Another shrug.

In other frustrating news, I’m taking a lot of medicine right now – most specifically some “Anti’s” as a preventative measure – antivirals, antibiotics and antifungals. That seems obvious, right, with my immune system where it is. Well, I keep sort of mismanaging any refills. The pharmacist at the CVS and I are good friends now, but that wasn’t always the case. Who knew they closed at 7:00 on a weeknight? Here’s some of my dialogue from 7:05 on Wednesday last week: “Hey, so I really, really, need this tonight. If you can’t give it to me, I’m just going to another CVS and harass them.” I got the pills. Today I had to transfer a prescription from the hospital to the CVS which involved: transferring the prescription online through their online portal, talking to the pharmacist, talking to the pharmacist again, talking to the hospital pharmacy and negotiating a transfer while their computers were “down” being “upgraded”, and then talking to the pharmacist again. Got the pills. (Also, have you tried to call and talk to an actual person at the CVS recently? Goodness, it takes about 5 minutes each time to go through the automated menu, pushing buttons until you get a person. No, I don’t have an RX number, that’s why I’m calling.)

However, it’s also been a really grateful week. I’m grateful for the pharmacist who does make things happen. Grateful for friends driving me home from the blood transfusion (and taking me back in when well, it was apparent I had low platelets and had been stuck too many times that day). Grateful for the VHC staff that do make room for me to get blood transfusions! Grateful for friends that text and check in on me and tell me about their lives. Grateful for friends that send funny socks and cards, and friends that pop up in the most unexpected times and encourage me. Grateful for avoiding mouth sores this time around. Grateful that we live in a time where I can watch almost anything on tv with the push of a button (Below Deck is a workplace documentary, don’t try and convince me otherwise).

Down to specifics, blood numbers were very low for a week, but have started to climb. On Monday I had 1 neutrophil, Wednesday I had 5, Friday I had 50. That means my immunity was low (indicating the chemo is working?), but is coming back. Doctor says this is all good and where we should be!

The accompanying photo is from my balcony (did you know we have a balcony?!) today. I took a picture at the hospital getting the blood transfusion and it looked like I really needed a blood transfusion; I just deleted that photo never to be seen again. Also, another top question from my callers: yes, I still have hair. Yes, the Doctor(s) m

ention it every so often as "super human" and "yeah, we've discussed it." Jeez. I've gone through three rounds of chemo where my hair was supposed to fall out by day 14 of each (the first day 14 was July 7). Shrug.