Finally, finally, FINALLY I got this fluid drained and I have my IV nutrition back (TPN)! The fluid was drained by a procedure called paracentesis and it was done this past Monday afternoon. Remember my post about my liver biopsy? They couldn’t sedate me well enough because of my blood pressure. Well this time, my blood pressure was just peachy
but I had been taking a drug called low-dose naltrexone and it blocks the opiate receptors. Typically I would’ve stopped taking them a few days prior, but I had taken one Sunday night, not realizing my paracentesis would be so soon! So they think I have an even bigger tolerance than I do. Guess I’ll have to tell them about that next time! Anyway, we got in there and the radiologist comes in and starts looking, with ultrasound, for the best spot from which to drain. He took a look at me and said, “You want to get that drained? Just how much fluid do you think you have there anyway?” I told him probably about 5 litres. He asked if I was a gambling woman and I said, in this case, absolutely. And the bet was on. He numbed me then put the drain tube in, which he had to do rather forcefully … that resulted in a very loud owwww from me (I am not a silent sufferer … he is lucky I didn’t grab him by the collar and threaten him within an inch of his young life). Along about the third bottle, the tube slipped out! He said he had to do it all again and I told him he better find some bigger, better drugs before he starts that foolishness. Don’t know what they brought back with them, but the second time was much better! When the tube slipped out, however, we only had about three litres removed and I mentioned that he had won, danggit! He said, “Not quite yet I haven’t,” and that’s when he started the second round. We got between four and five litres out of me … there is still a bit in there, but oh is it ever better! And bonus for me … I won a bet and got to look at serious McDreamy hair (gotta say the man had great hair), and lost 10 pounds badda bing, badda boom! Wouldn’t advise that diet to anyone, but now my heartburn and reflux is all gone, thank God!
As for the TPN, this time it is only about 25% sugar this time rather than 70%, so that’s a big plus. We had them mix a low-glycemic variety and they brought it over last night. We are having to pay what TriCare doesn’t, right now, until my VA PCP writes an order for it, at which time, the VA will foot the bill, praise God! Given John’s vast experience changing out my TPN bags, from my stint in the hospital (that lasted about three months), and again for the 3 weeks before I went to Georgia, so he is pretty well-versed in the pumps and tubing, and how they all work together. So he was able to figure out this new pump and get me started before we went to bed last night so I could get calories while I slept. I woke up two pounds heavier this morning. The balancing act for me is, is it fluid or is it real weight? So the only way I can tell is to take measurements from right below my rib cage, waist, navel, below navel, hips, and thighs. The fluid can fill the first four but not the last two. Those hips and thighs don’t fill up with fluid, but they sure do carry fat! Too early to tell if it is really fluid or calories, but the next few days will give me more of an idea. But at least now I don’t have to stress about not getting enough calories, or the right balance of proteins, fats, carbs. It’s all done for me and whatever I can eat on top of that is a bonus and keeps my GI tract functioning. In about 15 minutes, a home nurse will be by to … well, she thinks to get me started on my TPN. She will be pleased to know her visit here will not take long. Anyway, she is to get us started, then she will come back 48 hours later to draw blood to be sure my electrolytes are doing ok. When one is malnourished, and they start TPN, their electrolytes can get really wonky so better safe than sorry.
I had already started my Tamoxifen (a drug that fills the estrogen receptor on the cancer so estrogen can’t fuel it) a week ago and, together, we decided to revisit the chemo drug I used last year … Taxotere. We didn’t ride it all the way to failure last year, and Tamoxifen takes 2-3 months to kick in, and my circulating tumor cells are rising rapidly. Currently they are as high as they were when I came home from the hospital a year ago, so we need to move quickly. I am not as sick as I was then, but I’m not far from it and my numbers are even closer to it. So we will, once again, attempt to use Taxotere to hold it back while the hormonal therapy takes hold. We drew a CBC yesterday to see where my white counts are because as soon as they are back up to normal limits, we will start the taxotere. It’s not too toxic on the bone marrow. And there is another one to fall back on … Halaven. That one isn’t too toxic on bone marrow either. I have some other, more toxic options as well, should I decide to use them. On a more somber note, I asked for a referral to palliative care. Now this is not hospice. Hospice means you are no longer pursuing treatment. Palliative care folks are supportive … they are typically on call 24/7, the one I’m looking at has its own pharmacy so if I need pills reformulated to sublinguals or something, they can. And the way things can turn on a dime, it could easily happen that I could start heading south within days and I could be too sick to do consults and interviews and such. So I wanted to be able to choose an organization while I still feel up to the task. I am not giving up here, and I hope no one sees it that way. The referral was for palliative only … not hospice. My dr looked at me funny when I asked. He said he thought that was a bit premature. But when I explained my reasoning, he put in the referral … especially since my explanation consisted of, “Well what am I gonna do if something goes down in the middle of the night? Call or email you?” Yeah, that got the job done!