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.
Starting new medications means trading one set of side effects for another, and this causes the paradoxical condition of both feeling better and feeling worse at the same time.
My energy has returned, my joints so much feel better, and I’m no longer feeling bloated and heavy from the moment I wake up to the moment I lay down to sleep at night. Instead, though I have rolling headaches and nausea, and sharper pains in the belly that come and go.
It’s hard to gauge whether one medicine or another leaves you better off or worse but for me and for this medication, the relief from joint pain alone is a godsend. Not only can I move again, but being still is no longer painful either.
I was finally able, after weeks of back and forth with my doctor, my insurance provider, the pharmacy, and the drug company, to get my medication and now I find myself almost too afraid to take it! They really should try to find gentler wording to use in those warning packets they give you the first time, you know?
I wish I felt comfortable enough to share the outrageous cost of the medication here but I will tell you that after ringing up the bottle the pharmacist simply started at the screen with a look that was equal parts confused and astounded.
He wouldn’t even speak and only after I told him he was worrying me and asked him to please explain the look on my face did he ask me what I normally paid for the medication. I told him that whatever the cost I wasn’t the one paying; it was the drug company, and he sighed relief on my behalf. When the price came up on the card reader, I understood his shock. Even if it wasn’t my money, it hurt a little to swipe that card.
No matter what I go through in this shit show of a healthcare system I am constantly reminded that it could be worse. I could have had to pay that price tag with my own money, and in all honestly, that price would have been many times larger if I didn’t have insurance at all.
I’m frustrated for me but I’m wholeheartedly sorry for those worse off. I hope change comes soon and we all get relief from this cruel and unnecessary bureaucracy.
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.
I was supposed to begin my new medication today but there were more complications at the pharmacy. Now, even though my doctor has ordered the medication and even though I have already done a cost analysis, the benefits department still has to take one more look just to make sure that, I dunno, they still want to pay for it or whatever.
I sat in the waiting area for half an hour only to be told it would be at least a few hours more. They would call me theytsaid. So, I left the pharmacy nearly in years and went back to work to wait anxiously by my phone and got no phone call at all. Now, I’m still waiting, still frustrated, still not on medication, and seriously considering changing course and going back to infusion medications for which financial support has been easier to navigate.
My night wasn’t much better. I made a grave scheduling mistake and we ended up driving across town for an event that doesn’t take place for another week. So, to help cope with my embarrassment and guilt I proceeded to overstuff myself with a double cheeseburger and a bag full of cajun fries for dinner. Afterward, we snuggled in on the couch and watched trashy TV dramas until I felt calm enough to put the day firmly behind me and head to bed.
Tomorrow has to be better.
P.S. I want to take a moment to acknowledge that this is my 100th post here and to say that while I have only just begun to work out what kind of space, this is it has already been an immense joy to have. Too much in fact, I’m afraid. It’s been a complete distraction as well and while I know eventually I’ll have to venture out from the warm comforting glow of this new place, I’m happy for now just to explore, to tweak, to write my foolish words, and to be ignored. Thank you all for reading.
I’m stressed, exhausted and irritable today, but I’m also feeling so, so happy too.
My doctor did call to yell at me as I expected she would when I set up the appointment yesterday. At the same time, she was professional and compassionate. She’s worried, but she also cares. We’re moving forward and I have more blood tests to do and a new schedule for future ones.
My sister flew into town last night, which is why I am both exhausted and happy. I was out later than I should have been to be with her, her kids, our other sister, and my mom. We had fun. We always do when we are together, but it’s more than that. Sisters, no matter how difficult or annoying they are, or how different they are from you, they know you. They might not always get you but they know you better than anyone.
They live their lives beside yours, for all of their lives if not all of yours. It’s a gift too many of us squander and I am determined not just to be grateful for them, but to give them a reason to be grateful for me in return.
I still had to get up early this morning for work, which explains the irritability, but I’m trying my best to keep my spirits up. I’m off tomorrow for my brother’s wedding and after that, I’ll have one less thing to stress about while I stress about all the other things I have to do.