It's been a long month of appointments, events, anxiety, pain, and uncertainty. I've struggled a lot this month with depression and asking myself if everything I'm dealing with as far as symptoms and side effects is worth it. I spend most of my time in bed, and most of the time that I'm not in bed I'm wishing I was, just because I almost constantly feel a sense of discomfort.
Alan really made an effort to get us out of the house this month and try to get us out of our own heads. We went to the zoo, the DIA, and a failed attempt at the science center but there were just too many kids.
Every morning I wake up and take my clinical trial drug. Five little pills that smell like glue and chemicals, that are hopefully slowly saving my life. Just swallowing the pills instantly makes me feel nauseous and I'm not allowed to have any other medicine or any food or drink for 2 hrs before and an hour after. I usually try to fall back asleep for at least the hour after I take the pills, unless we have an early appointment that day. Then I don't have the luxury of sleeping til I can eat, and have to struggle through the nausea and get ready for a long car ride.
At the end of the hour I usually manage to choke down a granola bar or some crackers. Some days that may be all I eat. Between the nausea, mouth sores, loss of taste buds, and an instant need to run to the bathroom most times after I eat it is hard to eat a meal. If we go out I might have a few bites of french toast or half a cup of soup.
So now on to what you've all been waiting for. It's what I've been waiting almost 5 weeks for at least. The results of my 7/31 biopsy to determine if the lowered dose of the clinical trial drug is effective. I couldn't even get out of bed today, stricken with anxiety waiting for the call.
Finally at around 1pm my phone rings. It's Heather (my Physician Assistant) and I ask her to hold on a second so I can call Alan into the room and put it on speaker. She starts by reminding me of the results of the previous biopsy I had on July 1: 55% disease. She then says that there was a moderate decrease down to 31% after a month of being back on the trial.
So, medium news I guess. The first time around at the 700mg dose the drug too me from 36% disease to nothing detected after only 3 weeks on. Then I had a 7 week break from the study due to multiple infections in which my disease went back up to 55%. Getting back down to 31% is great, but not as great as getting back to 0%.
They are giving me the choice to make for myself again. The results are enough that they will support me if I want to stay on the study to see if we can achieve some additional reduction with it. The results are also small enough that they would support me if I wanted to exit the study and move on to the MYLOTARG chemotherapy. I've mentioned this chemo before and it's the last thing currently commercially available to me, so for now as long as the trial is working *some* and we can hope for a further reduction in another month, I am choosing to stay with the trial.
After we got the results I still couldnt get out of my anxiety funk. My nausea was really bad, my stomach hurt a lot, and I could barely eat half the peanut butter sandwich Alan made for me. I felt bad, because it was the 6 year anniversary of our first date and I could tell Alan really wanted to do something and make some happy memories for the day. I just couldnt do it though, my anxiety was eating me alive. I stayed in bed the rest of the day until finally taking some ativan to help me fall asleep.
People often say to me that they want to help in some way, and I always come up empty. I hate asking for things or money and it feels really awkward to have you over to do my basic chores. But these are all needs that we struggle with.
We are almost always in need of something off of this Amazon list. We go through paper towels and toilet paper faster than you can imagine.
https://www.amazon.com/hz/wishlist/ls/18O1QQXBJBJF6?ref_=wl_share
Kroger gift cards for gas and groceries
If anyone has or can take a random MWF off work and wants to volunteer to take me for my blood draw and/or transfusions depending on the day, and just spend some time with me.
Grass Cutting: Alan injured his back recently so this one would be really helpful to him.
As always thanks for reading. ❤❤❤
