(19-05-11) Chemo Problems

My last day of pelvic radiation went off without a hitch. The fatigue side effects will soon dissipate, although since I do have brain radiation all next week, I might end up feeling just as exhausted and weak for a few more weeks to come. I’m also curious to know whether I’ll end up getting that radiation sunburn like I did last time. With that last time of breast radiation, it was during the third week of radiation that the sunburn developed, so I guess we’ll just have to wait and see….

I met with Dr. Patel, my radiologist, immediately afterwards. There were a few worthy points:

  • She said my brain tumor was 1.7cm x 1.6cm and had settled near my hippocampus. In Mexico, Dr. Rubio said it was 1.2cm and resting near my occipital and frontal lobes. So it is definitely growing and moving around, which explains my changing symptoms.
  • She said that the radiation right now is not to shrink tumors, but actually deal with pain management. I’m in so much pain right now that statement seems laughable, but I know that my pain is mostly from my edema.
  • She also said that Dr Curley will decide if I go back to radiation for any other spots on my body later down the road.

So… Radiation was easy. Chemo today was not. I stopped counting at 7 but they basically spent an hour trying to find a vein where they could draw blood. They like to have a full blood panel before chemo just to make sure there aren’t going to be any problems. Unfortunately, they couldn’t find a vein because I’m so swollen with edema that the needles that were actually making it in to my skin could not draw any blood, only edema fluid.

They then told me that I couldn’t have chemo if we couldn’t do the blood draw. I threw a goddamn fit, turned into bratty non-compliant patient Tarah, and basically made so many arguments and refused to leave until I got chemo. I eventually won, but damn, that was quite a fight.

Next week: five days of brain radiation.

(19-05-10) Clinical Updates

  • Tomorrow is my last day of pelvic radiation. I don’t know if they are able to give me any results at that point, but I do see the doctor afterward. Fingers crossed for some good information.
  • Tomorrow is also my second out of third chemo session. You all know I’m not looking forward to that but at least I get to use a really cool mask. Brain radiation happens all week, and doctor Scolnik assured me that between that and the steroids I’m taking, I will start to feel better. I don’t know if he tells all of this patient’s that, but I can tell you that I’ve been very impressed with him so far. He gave me his personal email address in case I have any questions about this process, and he also calls and checks on me. Doctors today just aren’t like that, and I have three on my treatment team willing to go extra miles just for me.
  • I rented a scooter for almost $400, and Amy lent me a wheelchair. I still try not to leave the chair when nobody’s home, due to the risk of falling, but at least I have more mobility around the house when people are here, and it’s a little better to be going out when I have those tools, and people are taking me to appointments.
  • When I checked 2 days ago, my weight was down to 152. This means that I have lost eight pounds of the edema, and Dr. Scolnick upped my diuretic dosage so that I could start losing more of this faster. It hurts so much. I know as soon as my legs are back to normal, I’ll be able to stand and walk on my own better, so this is the one area I’m so focused on.

(19-05-06) Bad to Worse

I wish I had better news for you. I don’t. Bullet points of updates:

  • At this point, I am on house arrest. If I don’t need to leave the house for medical or legal purposes, I am not allowed to go.
  • I have pneumonia, which is still obvious from the phlegmy cough from hell I have every day.
  • Did I tell you I was recently in the hospital for six days? It was because my brain tumor was expanding on my brain in such a way that was grossly affecting my motor-coordination, memory, and language skills. Scary day. I thought it was my last.
  • Right now, my medical entendre includes two weeks of pelvis radiation (just finished one), then one week of brain radiation, and chemo on April 19, May 10, & May 31. Then we check on progress, to see if we are making any.
  • I get by on a walker. Tomorrow, a power scooter is being delivered that I spent $400 to rent.
  • One of the reasons I can’t walk is because of the 30 POUNDS that the hospital sent me home with. It’s disgusting. I think I still have 27.
  • I cry every day. Some people tell me not to, so I talk to them less on purpose. Right now, I am living the exact end-of-care that I did NOT want for myself. I think many people forget that.