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Wednesday, July 29, 2020

2020-07-29 Treatment Day

 

  • Sunday 7/26 started breathing a little wheezy. Got somewhat worse on Monday.
    • April said start taking the pee medicine like I was before the dosage was cut down. Three of that one 20mg pill instead of two. And the 50mg instead of the 25mg of the other.
  • My lower back seems to hurt to the degree my wheezy breathing gets better or worse.
  • I went to dermatology today and they would not see me. The receptionist said that TennCare is my primary insurance (not Medicare), and that they do not accept TennCare. I told her that Sarah Cannon might be paying for it and would she call them. She said it was too hard to get through to them and I should get another dermatologist.
    • She will look for another dermatologist for me to go to.
  • Only take one test drug pill today and then keep taking them as normal.
  • She may change my schedule next week so that I can come and see the doctor while I'm there.

Sunday, July 26, 2020

Latest Update

It's been a hard day. I actually cooked a meal to share with my mom, stepdad and sister. I also did a load of laundry. Mother helped me clean up as usual.

I'm worn out and am taking myself to my next oncology appointment this week, which also includes a dermatology appt. in a different place.

It was hard explaining to my mom that I must do all that walking, even if I'm using a walker, as long as I can before defaulting to a wheelchair permanently. And that each and every step I take for the rest of my life will be a struggle in itself.

I think the worst part of having cancer is having it in front of my own parents. I fight hard to keep what I've got, but as time goes by more and more of my abilities disappear. I'll hang on to them as long as I can.

And that's just how it is budrow.

Thursday, July 23, 2020

2020-07-23 Treatment

 The doctor said:

  • Stay on reduced level of lasix
  • He will have the nurse make an appointment with dermatology about my skin rash
April, the research nurse, said to make day one of my treatment cycle to be the day I go to clinic rather than the day before

Tuesday, July 21, 2020

Information About Clinical Trial RM 610

Here is the detailed information about the clinical trial I am currently in at Sarah Cannon Research Center.


The drug has so far given me a rash and acne on my face, neck, head and chest. It's about as bad as the previous drug I was taking, except this one bleeds a lot. So I have blood running down my face often.

It has also caused me to gain about 2 pounds a day, for a total of 30 pounds during my first two weeks. Much of this is fluid, but has caused me to be unable to walk without a walker or to walk across the house without resting.

I have been put on a fluid pill to help with getting rid of some of the swelling. It has helped a lot, but I still need a walker. There are also other problems caused by this that are too difficult and embarrassing to talk about.

I think I mentioned that my second lung biopsy had to be cancelled due to an inability to breath without coughing and wheezing when lying backwards. It may be rescheduled or cancelled completely.

I have to be let out at the door of the hospital and pushed in a wheelchair and cannot walk around my house.

Any other symptoms I have are from the multitude of blood draws, EKGs and ECHOs. I will know if my cancer has been growing or not after my next CT scan in a few weeks.



Friday, July 3, 2020

Finally Back Home

I'm finally home after a week of terrible biopsies, tests and starting new chemo that doesn't even have a name. It's hard being a lab rat. I think they took at least 30 vials of blood on Wednesday. And I'm just getting started. And it won't even make the cancer shrink or go away. I'm so tired, scared and feel all alone.

Birthday Card from Mason Simpson