It’s infusion day, again. This one is a little more special. It’s the last of what they call the “loading doses”. After this I go on a more regular schedule of every eight weeks, as long as all the tests they did at the lab beforehand come out stable that is. We still have to see if the drug levels are where they should be and if my white blood cell counts and a few other things are where they should be.
I’m still dealing with some questionable and slowly worsening symptoms, but I’m in contact with my healthcare team and no alarm bells are going off yet. A few more tests have been ordered and I am being asked to hold off on lower the dosage of any of the medication I am currently taking which is a real bummer. I was looking forward to at least one less pill a day for a while.
The center is still a lot quieter than usual. I think non-essential procedures are still being postponed. It was nice to be to be out of the “broom closet” private infusion room and back into the open area with the big bright windows again but the nurse warned me that next time I may not be so lucky.
I know other people need these spaces, but it bothers me that because my infusions are shorter; I have to be shut into a windowless room and every time I bring it up t the staff I’m brushed off. I don’t think they understand that it’s depressing to be there no matter what your condition or how long your infusion takes. I should at least get to see the sun while I’m there.
It feels like it’s been months rather than weeks since I last had to get up and get anywhere on time. Today is my infusion appointment. My third out of the first four they call the “loading doses”. Getting out of bed and then getting ready was difficult. I’m just not used to it anymore but at least we were able to leave the house a bit later this morning knowing that there would be minimal traffic on the roads.
I’m hear now and about halfway through the bag of medication. I’m not in the small windowless and cramped room they had previously shoved quick infusion patients like me into. No, I’m back out in the big open room, but it’s not as cheery as usual.
The blinds are drawn and there is no sun or mountain views from my comfy recliner, and the place nearly empty. The nurse working with me explained that most infusions have been cancelled to reduce spread of the virus. Only chemotherapy, inflammatory bowel, and other patience who are relying on this place to keep them at optimal health are allowed in now. I’m ashamed that made me feel important.
I hope by the time I come back at the end of May things will be a little more like normal again and though that means I’ll most likely be back in what my wife calls the “broom closet” for my infusion I need the sun and the people, the smiles and cheer. This place, though by definition is a sad one, has paradoxically always been a source of encouragement to me.
I’m still not feeling much like myself but I am doing my best and pushing through. I just wish time would move a little faster so I could get back home and get back to resting. I’m grateful for my fiance today who will answer a call and reply to texts even when she’s busy because she knows I need her. I’m grateful for a partner who will leave early to make lunch plans and who can make me feel that even if “right now” kind of sucks, “soon” will be so much better if I can just hang on.
So, lunch had to be canceled due to family emergencies, but the day still got so much better. I got that nap I needed very much and afterward, we went to do another fitting for my suit. It’s coming along so beautifully. Now just the pants need to be hemmed up and let out a little at the waist.
The weather was crappy, and we were hungry. The week was still wearing on us still and we’ve missed each other, so we opted on impulse for a much-needed dinner and a movie date night. We got crappy seats to a zombie comedy, ate too much popcorn, had too many cocktails, and giggled like schoolgirls in love. Oh, how I’ve missed that! The week couldn’t have ended on a better note!
Today was a hard day. My mood is in a downward swing and I’m not playing well with others. I did my best to fake it for as long as I could but I ended up calling it a day early and heading home to my dog and a good nap.
Fatigue is killing me. I used to be able to fake it. I used to pride myself on my ability to power through, but lately, I haven’t been able to hide it so well. Lately it’s been noticeable and lately, I can’t even gather myself up enough to pretend.
I have the option of making today my Friday and making Friday the beginning of a three-day weekend which sounds really nice but I keep doing the math in my head so many dollars per hour times so many hours per day is how much money I am taking away from us when I stay home. My actions impact others and taking care of me often means depriving my home of something it needs.
It could be Friday but I doubt it will be. My guilt won’t let it.
In addition to the aforementioned fatigue that has been plaguing me and two nights in a row of staying up much, much later than I should, I took an allergy pill a coworker gave me this morning and find myself ready to fall asleep where I stand.
I’m growing increasingly irritated at the inconvenience of a day job and angry at having to force myself awake. I’ve had three espressos and seen zero signs of improvement and have resorted to walking around the building outside hoping to keep the blood flowing to my brain. I’m doing everything I can to outpace the drowsiness creeping into my limbs but I just need to sleep.
I’ll head home in just a few hours and do my best to squeeze in a catnap and a late lunch before I’m off to help my mom with a few things. I’m already looking forward to the evening when I’m back home. The plan is to crack a beer, eat something bad for me, and head right to bed.
It’s my second day at work after taking another three-day weekend and I’m already ready for the week to end.
I’m determined to work the rest of the week but my fatigue is terrible and only getting worse. Caffeine has stopped helping and I worry that increasing my intake will only make matters worse. I need more than rest or sleep. What I need is a break. I need time outside of time.
I need to get away from all the things that are making me anxious. I need to get away from work, from people, god, from myself most of all. I need to spend some time in deep focus I think. I have time to spend there but not enough time to get anything of substance or value done. Things interrupt me. I interrupt me.
I’m feeling awful today. My head, my stomach, my whole body! And I’m so tired. I got nothing done and now I’ll have to spend tomorrow trying to redo today.
I guess that’s not so bad, as long as I actually feel better. Either way, I will do my best and then I’ll do just a bit more. I want to hit the ground running this week and get some shit done this week. I don’t have time for this chronic illness crap. It’s so frustrating to be inside of a body that can’t, or won’t, cooperate.