Bleak

Where do I start? A lot has happened in the past two weeks. I’m feeling overwhelmed and honestly not very hopeful.

I went in for chemo on June 23rd and there was an issue with a supplement that I was taking. (Not a new supplement.) They didn’t want to give the chemo for fear it wouldn’t be as effective when taken within 24 hours of this supplement. To say I was angry would be an understatement. I actually haven’t experienced anger much over the past year and a half, so I was a little surprised at just how angry I became when they rescheduled my entire week and treatment plan. I schedule treatments and visits so that they have the least impact on my time with my family. This was a disaster. I was rescheduled for the following day and sent home. Angry. The following day went fine.

Because all my visits that week had to be rescheduled, I was now on the calendar for Saturday. On Friday, I was notified that the normal area of the hospital wouldn’t be available and I would have to go through a complete admission and testing before I could get chemo. This meant my entire Saturday was going to be filled with stuff that wasn’t directly related to treating my disease. I was angry and super emotional. It was after hours on Friday, and I asked Mike if he was ok with me refusing treatment the following day. I couldn’t even advocate for myself, I was so upset. Luckily, I have the worlds greatest husband. He hopped right on the phone and talked to nurses and doctors and we came out of the conversation with a new game plan. I was not going in on Saturday and it wasn’t a big deal.

The following week I was scheduled for chemo on Tuesday, June 30th. When I arrived I had an examination and discussed that the lymph nodes in my neck appeared to be growing yet again. Bad sign. This signaled to my doctors that the current treatment plan was not working. (I feared this when I noticed the enlargement.) We stopped treatment. Just like that. It was not worth the toxicity to continue treatment if there was a clear sign the cancer was continuing to grow.

Now, I’ve been told I have cancer. Twice. But, hearing “patients with resistant desease often die as a result,” was specifically hard hitting. I really felt like I was punched in the stomach. I am not sure how I held it together long enough to hear about treatment options and then the long solitary walk to the car, but once I climbed into the drivers seat… I lost it.

We met with the team again and discussed the options presented. ALL OF THEM ARE EXPERIMENTAL AND HAVE LIMITED IF ANY RECORDED SUCCESS. I need this to be clear. If my body cannot get into remission and stay there for at least two months, I will not be able to get a transplant. Without a transplant, I will not be cured. Without a cure, I will die.

We have chosen to do an experimental treatment with my current care team while simultaneously obtaining a consultation with a medical team at Baylor. (They’re doing some cutting edge, highly experimental treatments.) This treatment plan we have chosen has shown some success for patients with recurring leukemia. (I have lymphoma/leukemia for those trying to keep it straight.) I’ll be going inpatient sometime this week and will be there for about 5 weeks.

I am running at an all time low. I’m tired. I am less and less hopeful with each day that passes. I am having hard conversations with people that I cherish. People who are having a really hard time accepting the very real possibility that I might die. People who love me. People that I love.

I usually do a list of prayer request and praises, but tonight I’m just going to ask you to pray fervently for this new treatment plan to get me into remission.

~Elizabeth~