Ascites

So let’s see. Surgery went OK. We’re not sure how the window is holding up but I expect it’s doing well and will be getting my follow up scan soon. I haven’t heard back about any of the biopsy info yet either. The chest tube caused me a lot of pain and stayed in for quite a while, it also developed the annoying quality of leaking chest fluid all over the place. That at least has finally resolved. Pain was a real issue for a while there but I got them to let me onto my normal at home oral pain meds and that helped tremendously.  Still I was having a lot of trouble sleeping so we pushed me home pretty fast and I think being home helped me sleep a lot and that sleep I think is very helpful.

So I made a very stupid choice. My latest CT scan showed enough growth that we figured we should swap my treatment, and since we didn’t want to stress my system too much around surgery we stopped my Interferon for just over a week. My neck tumors have exploded in size and I suspect the other ones did too. I had to restart the drug because I was in too much pain. For example the tumor in my left neck feels like it started to grow into my arm and cheek. The stupidest part of this is that we finally settled on a treatment of low dose IL-2 and Interferon in the end, so there was basically no reason to drop the interferon at all. Basically the treatment is going heavy on immune response modulation. I’d want high dose IL-2 instead but my body isn’t holding up very well right now so that’s a bit of a fantasy.

I want to make clear to everyone that I am entering a treatment plan I am happy with for the moment, though will probably always be pressing for higher doses or additional drugs. My mom is telling everyone that my doctors are keeping me from doing the medication I need. This is not true; they had suggested a different drug before but now have changed their minds. She got her heart set on that drug and now thinks I’ll die without it. She also cannot comprehend the idea that interferon does some good even if not enough to cure me; she believes everything that doesn’t outpace the cancer is only making things worse. It is true that the interferon does cause some problems but I think the extent to which it does control the cancer is amazing. I am also a big fan of immune therapy so I want to try this combo.  But in all seriousness please disregard most of the worries my mom may spread to you, she has lost view of the situation. She doesn’t even trust my doctors now and is trying to find me new ones, even though Katie and I are fine with our current doctors.

So a new problem is actually causing me more trouble than the rest of my healing. Apparently before surgery they saw I had ascites, which are fluid pockets in the abdomen, but I guess they didn’t care enough to tell me until after surgery. Anyway it turns out that some of my old belly pain was probably due to that, now I’m having a lot of belly pain from it. I’ve gone in twice to get it drained already and am going in tomorrow morning to do it again. They’ve pulled out like 1.2 litters the first time and 1.5 litters the second. Apparently people with bad swelling can get like 25 litters but I find that absurd, I’m so skinny that 1.5 makes me look pregnant and makes my belly ache. I’m worried the TPN is partly to blame because IV fluids cause odd water retention and swelling and stuff. The ascites itself is either from some organ doing badly and leaking, like the liver or kidney, or tumor could be secreting fluid like it was doing around my heart, or it could just be an inflammatory response, which might in part be due to interferon but then we would have expected it to improve when I was off interferon. Anyway hopefully we can find a solution besides just draining it every few days, which is very inconvenient and quite annoying since it involves a needle into the belly. I’m kind of hoping they’ll just put in a valve so I can drain myself off if pressure grows. But we need to do something, because the pain is my current biggest pain, it keeps me up and night and you’d better believe it impairs my ability to eat.

 The last real medical thing to mention is extremely embarrassing. When I was healthy I could stand from the ground with one leg under me and the other held straight out parallel to the ground. That level of leg muscle was something I was really proud of. Now I have reached the point where if I fall I cannot stand. I have been hospitalized too much recently and my thighs have atrophied. I have trouble on the stairs and think that without support items like chairs to pull up on I would never be able to stand from sitting on the ground. We’re relying on my wheelchair a lot now too for extended trips, though that’s only partly my legs and more due to the fact that I have pain from the ascites.

On the plus side Christmas is on the way and we’re spending some decent time together. I have had my energy levels pick up the last few days so I’m doing a bit more. We found out recently too that the local pottery painting store has a cool ability to make melted glass crafts. Katie and I both enjoy crafty kind of activities so she has made several ornaments and plates and stuff, Lizzy has helped paint a few figures and made some handprint ornaments and I have painted Lizzy a penguin piggy bank and made her a melted glass butterfly and Katie is getting a melted glass frog. I’ll post pictures when I have some. Also awesomely on the xmas front I know I’m getting a lot of fun things. (Mom doesn’t know how to use Amazon, which is where my wish list exists, and so I had to help her buy stuff. I’m really looking forward to those gifts.) Anyway I’m really looking forward to Christmas eve, assuming my health doesn’t mess things up I think it could be one of the best in a long while, especially because this is basically like Lizzy’s first real Christmas. She loves the holiday atmosphere. She loves the lights, and I open an advent calendar with her (she loves the chocolate), and she’s playing with Santa and reindeer toys and all that kind of stuff. It’s super cute and Christmas is always coolest for and around little kids.