So the countdown officially starts.
Tuesday, May 14, 2024: Day -15
I got my central line placed. A central line is similar to an IV line in that you can get IV medications. However, central lines can stay in place longer than an IV in your arm. It also makes it easier to draw blood which works out well for me since I’ll be getting 6am blood draws every morning to monitor my blood counts. A centra line is also useful because you can give large amounts of fluids or medicines like chemotherapy that cannot go through a peripheral IV line in your arm.
A central line doesn’t come without risks though. Risk of infection is always there, and now that I have a central line in my neck, I have to say it’s not super comfortable. It feels like you’ve kinked your neck from sleeping so I’ve been turning my whole body to talk to people even though I know rationally that I can just turn my head. It’s also a mini-procedure to get this placed. While it can be done with local anesthesia, I did ask for sedation because I was feeling very anxious and just all the emotions. I was still awake and conscious of what was going on, but more relaxed.
They did have to put a stitch in to keep the line in place so my neck was throbbing a little bit for the first day but overall, it’s not too bad.
I did wake up to some nice notes that finally arrived at the lodge! The beanie will definitely be making an appearance now that my head is in a constant state of cold.
The nursing staff here are awesome. Everyone has been a transplant nurse for years and you can tell they just care so much and are so detail oriented. They’ve also been really kind and patient with my families’ neurotic tendencies (all because they’ve seen me almost die and just care so much). Venice was my nurse during the day, and Rebecca was my nurse for the night.
Wednesday, May 15, 2024 : Day -14
I get asked a lot what I do everyday in the hospital, and to be honest, it is the least restful place ever. There are people constantly coming into your room, and while it’s great there is so much attention, there is really never much quiet.
I was woken up at 6am this morning by Rebecca for my morning lab draw and weight. I haven’t lost any weight yet, but I’m sure that is to come.
At 7am, the PCT, Comfort, came in to take vitals and at 8am, the NP Tonya, came in to check how the night went. She then goes to do morning rounds over zoom with the rest of the team while I try to get myself out of bed and eat breakfast.
At 10am, the whole team, Dr. Diaz (physician), Tonya (NP), the dietitian, the fellow came to do morning rounds and give me the plan for the day.
- 9:45 am: pharmacokinetic lab draw
- 10:00 am: Campath (alemtuzumab) SQ shot + monitoring. So far no reaction (yay!) but a little redness around the site where I injected.
- 1:00 pm: Mycofungin IV infusion (they decided to give me prophylactic antifungals via an IV because they anticipate that I will get mouth sores once I start busulfan chemotherapy and worry that I might not be able to take oral medications)
I did get to go on a walk at 11am and then ate lunch at noon. Around 3pm, Amber from recreation therapy came in to share what activities I could do while I’m here. I signed up for therapy dogs tomorrow (yay) and I asked to use the patient gym (at least when my blood counts will allow) and it looks like there is art therapy I can do in my room so hopefully those can help distract me when I’m not feeling great.
Showering is also a big to do so I try to do it earlier when my mom is around to help. Because of this central line in my neck, I can’t get it wet at all so it has to be taped up and covered. One of the processes this unit also requires to help prevent central line infections is the use of these CHG wipes after showering. There’s a little checklist outside of the bathroom door to ensure that I’ve done it everyday. I’m fairly independent right now, but when I start getting more fatigued, I’ll probably need some help with a shower chair and my mom so I don’t fall while I’m showering.
I get dinner around 5pm so I can do my whole routine of brushing my teeth, rinsing my nose with a Neti pot, cleaning my feeding tube site, etc. That way my mom and brother can go home to the lodge around 6pm and get some time to rest on their own.
Since I haven’t been working for a bit, I am also close to exhausting my short term disability benefits from work. I recently received the long term disability benefits paperwork, so I figured I’d start on that before I get brain fog from chemotherapy. Has anyone ever filled out this stuff? It’s terrible and an awful waste of time. Why do you need my employment history from the last 15-20 years? Why do I need to send the names of all 15 specialists, their addresses, phone number, fax number, emails? I worked on submitting what felt like 30 pages of documentation to see if my claim will be approved. It’s honestly so hard being a chronically ill complex patient dealing with ridiculous paperwork, fighting with insurance, etc.
I’m also supposed to be keeping track of my intake and output daily on a spreadsheet. These little to do list items (tracking fluids, brushing my teeth 4x a day, checking off my CHG cleaning, etc.) gives me something to do. Sounds silly but it makes me feel “productive” in a way and you know your Type A girlies get a dopamine hit from checking shit off a list.
So yeahhhh…I’m not doing anything but I’m also doing a lot of things. Makes sense? No? Yea me either.
Thursday, May 16 (Day -13) & Friday, May 17 (Day -12)
I had my second and third day of Campath. I’ve been tracking my blood counts, as one does, and my lymphocyte counts are already at 0, which is to be expected. Campath is a drug that depletes your lymphocytes (T and B cells). While my body doesn’t have many of these to begin with anyways and we’re also not sure if the ones that I do have even function, it might not mean much for me symptomatically. But scientifically, we have to get rid of them completely so that we can make way for Gordon’s new bone marrow.
I have a little medication holiday for the next 5 days so I’m going to enjoy things while I can! So far so good.