ETA: Please pray for my friend, Kate Snodgrass as she meets with her doctors Thursday at 4pm after receiving news that Her MRS findings are consistent with a tumor and to discuss further surgery and chemo. You can follow her story here : A Brain Tumor Story.
I completely forgot to tell you guys that I had an Neuro-oncology appointment today! I didnt have a MRI, I will have one on th 19th of December.
Things we discussed:
We are planning a trip to Virginia for Christmas, so I had many questions about that. My main concern is that my platelets will be too low and I will feel lousy… Well my platelets today were higher than they have ever been since I started chemo (165) and I am two weeks out! This is normally when my labs bottom out and they haven’t this month.. So He said that I was clear to go to Virginia and that I shouldnt have any side effects if my counts do what they did this time. If you remember, they lowered my dose of Chemo because my platelets were 33 on October 15 so we think that this dose is a good dose for me right now. My mom was concerned that it was too low of a dose because I felt so great the first three days (days 4-7 I felt horrible but not as horrible as I did last time) and the answer was no because I was still having side effects so it is still doing its job..
Robin, (the oncology nurse) prescribed Amitiza for my constipation. I was concerned that the insert said that it was to treat “Idiopathic Constipation” which means that it is to treat constipation that is from an “unknown cause”. He said that it was fine because it didnt have any Central Nervous System involvement. So I will take it with my next chemo cycle, which is the 9th.
I asked him about not being able to sleep the last few days of my Chemo cycle and he asked if I had taken Tylenol PM or Benadryl.
Tylenol PM does not put me to sleep and leaves me really groggy, and the same goes for Benadryl. He said that he would rather not prescribe anything just yet and asked that I try to deal with it because sleeping pills effect the Central Nervous System (I am seeing a pattern with the Central Nervous System!) We agreed to table that discussion until after my next cycle. I am going to call Walgreen’s and see what other OCD’s they have for sleep.
I also talked about the right sided “heaviness” that I experience the last two days of my Chemo cycle and he said that it was evidence that Chemo was doing it’s job. He said that if it were “weakness” he would be concerned, but not to worry if my arm and leg feel “heavy”, especially if it only happens when I am on chemo and goes away as soon as I am off.
We discussed how loud everything is to me since my surgery and treatments. Robin said that it was normal, and will go away.. I was so very glad to hear that.
Speech. Where to begin. When I become frustrated, I can’t pull words from my head to my mouth. I stutter and search for the word verbally, but I can visually see it in my head. I asked if that was normal, and will it ever come back. Robin said that it was most likely the combination of Radiation and Chemotherapy (and surgery) and that it is a common problem that many patients complain about. The good news is that it is most likely not permanent. It usually goes away after two years of not being on chemo. I cant fathom being this way for the next 3 years, but I can handle it knowing that there is a large possibility that it will go away.
It was a great visit, but I am exhausted and just plain worn out! I hope that your Wednesday was wonderful and that you made many lasting memories today!
Hug a neck 😉 ,