So Many Questions

This middle part of the week, as I continued to deflate, there were still a lot of questions. I was still stuck in bed. I was dizzy on and off. The left side of my face felt weird, including my eye, which is nerve wracking of course. No one had come to a consensus of whether I should be moving my legs around while I was in bed to prevent clots or if that would dislodge the clots I had.

There were risks with being on the tPA. At this point, on the fourth day, they were determined to take my port out. But they had determined that could not have for a few more days at least. This is when I realized how long I would be in the hospital. Away from my girls. The good news was, this was the day that the central line came out when they checked on the clot in the SVC. The bad news is, while my hands were going back to normal, I was still not able to hold a pen to give you an idea of how far I had to go. When the radiologist told my family what the results were this day, they said the SVC was 80-90% opened back up. They did not know at that time if it would ever open up to 100%. There was a new “wall” formed by the clot on top of the original wall. We expressed concerns that this would then pose a risk for a new clot in the future, and that was not something that they felt could happen. The main part of the original clot, we were told, was broken up into pieces so small it no longer mattered. The secondary good news was I was able to eat and drink at this point, since my visits to IR were no longer an issue and there were a few days to go until they could remove the port. My main concerns at this point were the long term complications from the entire experience and, now that I would be on blood thinners for life, how that would affect my body and what exactly they would be using as a blood thinner.

The next day, we found out that I would be leaving ICU. Before I was discharged, however, they were talking about physical therapy. We had a lot of concerns regarding removal of the port and the still existing remanents of the clot in the SVC that went up to the port catheter. I was no longer a Team A patient, since I was no longer as critical (if I understand correctly) so that meant my ICU team of doctors changed. And they Team A doctors changed as well since they rotated out of the hospital to some other area. It was NOT a smooth transition. The ICU Nurse Practitioner that came in to cover Team B that day had not done their homework and was totally lost in what was going on. The oncology team rounded and confused matters even more. Then the Team B ICU doctor came in and changed it all up. It would have been comical if it were not so frustrating. The discussion points included taking the port out or leaving it in (including if it was usable for chemotherapy and how we would know that and if not then what method they would use to administer chemo), what floor I would be moved to (general med or oncology), if/when I could be out of bed, whether new chemo drugs would be administered before I left hospital as inpatient, and when I would go restart chemo and/or go home.

I do not want to go into too much detail as to the advantages and disadvantages to leaving the port or taking it out, because I don’t want to sway anyone to do anything with their own care. The conversation went on, literally, for a few days. In the meantime, they were able to find me a private room on the oncology floor. I lucked out again with an end of the hall room, but not only that the nurses were uh-maz-ing that first night when we talked through the port options. I mean, drawing sketches on the whiteboard to show me how things work and talking me through it all kind of awesome. They considered leaving the port and using peripheral IVs or a PIC line as well as leaving the port. The doctors had me convinced leaving the port was the right thing to do when they all left that day. But by the next morning, something like twenty people had chimed in, and they had determined removing the port was the best choice. I especially liked that my oncologist said, when I asked him what he would do if it was his wife, he originally stated he would leave it in, but overnight he decided that taking it out was the better option and using peripheral IVs. The concerns many expressed with the PIC line were that I had small children and it is like a permanent IV with a sleeve overtop and, well, things can get caught/pulled on, infected, act as a vine with clots growing right up it, and can cause lymphedema.

I had another sleepless night, thinking about the options, what may be decided, and what I should want in the discussion. The next morning, I was more able to discuss with the doctors the options outside of the port and the peripheral IVs. This is when they let me know that taking the port out was decided. That sent us all into a whirlwind of confusion. Again, can not say enough how awesome the resident was to explain everything to myself and That Guy and my oncologist called and spoke to my mom to explain it all to her.

From there, it was mainly a concern of how I got to go home and when I could start my chemo treatments back up. That road was to first have the port removed. My main concerns with the procedure were the pain and after care related to the experience of having it put in as well as how they would ensure that the blood clots that were still surrounding the catheter would not break off and cause a major health emergency.

The port removal was scheduled for the following day. My mom and That Guy were going to be there with me. I was pretty nervous about it since they could not really tell me anything about either of my concerns. And even after the port was removed, I had another few days before I could go home. So night six, my mom stayed with me and day seven I would get one step closer to getting home and past this little detour. Finally, we at least had less than one notebook sheet of questions for the doctors to start the next day.