Sorry for falling off the grid for a while, as you last knew my kidneys were not being nice to me. Well because of that it meant a big change for me on Friday.
Friday morning I had my 3rd, yes, 3rd renal scan, which is a lot of laying down or sitting with your back being scanned by a fancy machine. If I have a good friendly tech they chat with you and time goes by quickly. Bless my tech, but she wasn’t much of a talker, and that is okay. So after that I went back to my room and rejoiced as my roommate packed up to leave!
Later in the afternoon a cluster of my doctors where outside my room. After a little bit of time they finally came in the room and told me what the plan for my care would be. From the tests they decide that it would be better for me to have a percutaneous nephrostomy also know as PCN or in non-medical terms tubes in my back that go from my kidneys to the outside in to drainage bags. Not being excited about it, but know that it is the best thing to do, I agreed to do it and signed the consent forms. From there it was more hungry waiting and thankfully I had the procedure that afternoon.
Like the other interventional radiology procedures I have had (power port and IP port) I was sedated and had a fun time chatting while a surgeon poked me in the back.
At first it was a huge burst to my confidence, but with time I have gotten to be more and more accepting of Chester and Priscilla (thanks Aunt Ann for the names). It will take time, and I don’t know how long these two lovely things will be with me, but I need my creatinin levels to go down, and this is the best way for it to happen.
I am now home from the hospital, I was discharged on Monday, had a small successful outpatient procedure to remove a small mass on my right side on Tuesday and have been adjusting to the new-ness of what is going on. Thankfully I am healing quite well, and I kinda think it is cool.
Went to the doctor today and learned that there is a a trial with a something called a MEK inhibitor that looks like it might be good for me. Currently my hospital is working on getting approved to run this trial, so I have to wait until summer, when my doctor thinks it will be ready for the “guinea pigs”. So until then I will be taking tomaxofin, a hormone inhibitor, yes breast cancer patients take this drug, and see if it shrinks my tumors. This is similar to what I did this past summer. I will get my IP port out in two weeks and then see my doctor in six weeks for a check up.
So in other words I get to be a “normal” person for the next couple of months, finish up school and wait to get in the MEK inhibitor trial. Which is great!
This Thursday will be my 5th treatment out of 6, which means the “end” is near with treatment. I say “end” because I think I will probably need more chemo, but what do I know, we will have to see what my CA-125 is and what the CT shows. I am doing pretty good, and other than pain can’t complain.
This treatment will be a little different because I will be doing it inpatient, instead of outpatient. I am doing it inpatient, because the last two times I got chemo after I finished the chemo and was just getting my fluids my palms and soles of my feet would start itching, benedryl helped, but when I got home my back and shoulders would itch. We don’t know if it is a pain medication reaction or the chemo or the trial drug, but since it is a Phase 1 trial they want me to be observed for 24 hours. So I will see my doctor Thursday morning and then go to onco gyn floor at the hospital and get my chemo there. So nothing really exciting, and probably will be really boring, but it is better to have it investigated and looked into rather than not do anything about it.
I will be sure to let you know how it goes, the only thing that might make it more interesting is the possible snow storm that may be making its way across the midwest, but we will see, come hell or high water I will have my treatment.
FUCK you hot flashes! You are so damn annoying, why can’t you just leave me the fuck alone. I don’t want to be hot, I don’t want to be flush, I don’t want to break a sweat. Seriously, you were gone and now you are back and a giant pain in my ass. Really just leave me the fuck alone! I don’t want to medicate myself anymore, or buy a chillow, but if you don’t leave me alone, which I know you won’t, I will just have to do those things.
If I wanted to have a wave of heat I would stand near a hand dryer and wave my hands. But I don’t want that, I want to be cold, the same temperature, able to sleep with out having to “breathe” my way out of a hot flash.
So FUCK you surgical menopause. FUCK you chemo, and a REALLY BIG FUCK YOU to hot flashes.
This quote speaks to me so much, I remember hearing it and crying like a baby. It is so simple and yet so true.