We left home at 10 am to get my PICC line swapped out for the kind that Froedtert uses. Because this was a swap and not a new placement, it was supposed to be a quick process. They run a wire through the old PICC line, pull it out, then guide the new PICC line into place over the wire. Half an hour tops. But apparently my body formed a stenosis around the PICC line and they were at first unable to slide the new PICC line through my vein. They have several layers of interventions and luckily mine worked with only the first level (ie: use a stiffer line to push through), but it seems to always be something with me! Add in the fact that my platelets were low (didn't know how low until after the procedure) and then I wouldn't stop bleeding from the placement and stitching, and the half hour procedure was an hour. But I do now have a shiny new PICC line! (No photos since I still have compression bandages around it.)
The one difference I can definitely say between Froedtert and St. Luke's is the waiting time. Today I arrived early for my labs and still waited 55 minutes past my appointment time to get in. I'm hoping that, with my future appointments mostly being in the morning, they won't be quite so far behind.
After labs, I have to see a nurse to interpret the lab results, determine if I need a transfusion, and generally check in with me on symptoms, etc. But I'm not officially transferred from Dr. Hamadani (transplant doctor) to Dr. Atallah (oncologist) yet, so I see nurses with Dr. Hamadani, who can't really answer my specific questions on chemo and side effects. However, I was able to move up my initial appointment with Dr. Atallah to next Tuesday (1/7). This is good because it will be before I'm due to start the next round of Vidaza.
My prescription for Venclexta finally cleared all the insurance hurdles and arrived yesterday, along with a delightful care package from the pharmacy. It includes such fun things as a giant water bottle to remind me how much water I need to drink daily while taking this med to protect my kidneys, some anti-nausea candies, Immodium, and lots of reading material. Of course, as soon as this arrived, I double-checked with Dr. Attalah's office and he doesn't want me to start taking it until after he's seen me! So weeks of pushing to even get the meds and now I can't start.
Unsurprisingly, my labs showed that my platelets had fallen below the 10K threshold (they were 7K) and so I needed a platelet transfusion. Unfortunately, the soonest opening to get the platelets was at 4:30--two hours later. This was not enough time to go home, but a big gap of time between appointments. I decided to sit and wait, hoping that a slot would open up sooner for the transfusion. It did--at a little after 4:00.
Every time I get blood products I'm asked the same question, "Have you ever had a reaction to receiving blood products?" And every time I answer, "Not yet!" and chuckle. Well, I can no longer say that. Last night, after a long, exhausting day of appointments, while receiving platelets, I said to Greg, "My back is kind of itchy and feels really hot. Can you look at it?" and he did, and saw nothing. A little while later, my chest also felt hot and itchy--still nothing. Finally I decided I was going to let the nurse know that I wasn't feeling quite right and by then hives had popped up all over. WOW! If you want to see nurses come running, have a reaction to an infusion! Five nurses, grabbing reaction kits, pushing Benadryl and hydrocortisone IV, calling supervisors...
In the end, the meds made the hives go down. Although I haven't seen him yet, Dr. Atallah took the nurse's call and agreed to hold off on getting more platelets last night (I got about half the bag in), and I was able to go home. Even though it was a relatively low dose of Benadryl, I only managed to eat dinner, nap, play a few games, and then sleep until 8:00 this morning. The biggest annoyance, I think, is that they'll have to pre-medicate me every time I need platelets going forward. And seeing how Benadryl affects me, my plan of gradually being able to drive myself to appointments may not work out. :( Ugh! I am looking forward to meeting with Dr. Atallah to see how long he anticipates that I'll have such low counts and need to keep getting frequent transfusions.
Yesterday also ended my wonderful almost-two-weeks of full family time. Ash went back to school. Travis leaves today. Cara will likely leave this weekend. And then Greg goes back the week of the 13th. It has been amazing to spend so much time with my favorite people in the world. We've cooked, we've played games--so many games. We've watched silly TV. We've laughed. I've stored up so much good to get me through the cold and ickiness that will likely be January and February. I feel lucky beyond measure.
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