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Welcome to my little corner of the internet. Here's where I will be discussing life with a terminal diagnosis, specifically a brain tumor known as glioblastoma, or GBM. I had surgery to remove the tumor from my left temporal lobe, deep inside. I have stories all about treatment, recovery, and living life despite the bad news.

Thanks for visiting. Hope you have a listen! Check out the ARCHIVE for more episodes!! 

Sep 1, 2017

TRANSCRIPT

This is Episode 004 for Glioblast-O-Cast: What was chemo like? 

Hello. Welcome to Glioblast-O-Cast, the podcast about life beyond glioblastoma.  I'm your host, Meg Turecek. 

In this episode I'll talk about the chemo portion of the standard treatment. 

And as a little disclaimer, I did not have the best experience with chemo, but my experience is not typical. I don't want to scare anyone that is about to start chemo because for many people it works, and they can tolerate it very easily.  

For me the standard treatment for glioblastoma when I had it in April and May of 2016 was surgery to remove as much as possible, for me what was looked like a hundred percent on my MRI. That is currently impossible to remove a hundred percent.  It's really a hundred percent of what can be seen. 

Along with surgery, about four to six weeks after, there's radiation. Check Episode 3.  I talk about that.  And at the time same time there's chemo, and that's the topic for this episode. 

Many people have a preconceived notion of chemo. The media is very good at depicting chemo but usually as it relates to other cancers such as breast cancer. 

I remember my mom's chemo from 25 years ago where she checked into the hospital overnight and received chemo in the form of an IV. They would send her home the next day, but her whole system was destroyed and vulnerable and she would get sick and end up back in this hospital for a week or more. 

I didn't want that. My neurologist explained my chemo would be different.  Just daily pills with the dosage based on weight.  No IV and no overnight hospital stay.  Easy, huh? 

Well, yes, but with a few words of caution. Some of this is not for dinner conversation, FYI.  One possible side effect of chemo can be constipation.  I would say imagine being constipated and double or triple that.  It's really not fun. 

My doctors prescribed different medications to help and prevent constipation. The mild prescription didn't work.  So I took the other one and only suffered one instance on day 3 of chemo. 

For some of us GBM warriors, constipation is the least of our worries. The big problem I had was how chemo affected by blood.  Most patients I corresponded with had an easy time with chemo.  But for the unlucky few like me, chemo can have a bad side effect that destroys platelets.  That's why there's a weekly blood test to monitor blood counts. 

Every week I had my blood tested. Some nurses are better than others at drawing, and an hour after I would meet with my oncologist.  At first he would just tell me if things were good or not, but for me, that was not a good enough answer.  I wanted to know the exact results.  I wanted to understand the whole process. 

So when my test results showed a drop in platelets below the normal range I was concerned. Normal platelet results are 150 to 450.  And for chemo I was told they like it to be at least over 100. 

Before treatment started my platelets were at 330. A week later after starting chemo, they were down to 260.  And week 2, down to 251, still in normal ranges.  But week 3, it dropped to 88. 

My oncologist wasn't concerned. He said it was expected.  We would watch what happened the next week.  He said there wasn't anything to do to bring it up, but he wasn't concerned. 

Then my week 4 blood test happened and it had dropped significantly. I was down to 9.  That's below the threshold and it required a platelet transfusion. 

For the transfusion I was considered an outpatient, and I would get an IV like I had dreaded. At that point all chemo stopped.  And it was my understanding it was supposed to continue once all my levels were back in the acceptable range of a hundred. 

My platelet transfusion was pretty quick. It only took a half an hour.  But the second it finished, something did not feel right.  Even though the nurse said I could leave, I waited a moment to focus.  I needed the restroom, and when I looked in the mirror, I saw the problem:  Full body hives. 

Right away I cried. It was an odd allergic reaction, certainly not typical.  So I had to stay longer for a while.  They gave me a high dose of antihistamine.  After about another half an hour all was almost back to normal and the hives were pretty much gone. 

Then I had daily blood tests and the platelets made small jumps, every day even on Saturday. I went up to 28, down to 19, then down to 17.  And then it went to 8 and another platelet transfusion, which I didn't look forward to. 

This time we started with a preventative dose of antihistamine. Unfortunately, as soon as the transfusion ended, the hives returned, stronger and even more overwhelming.  Again, I cried.  But the nursing staff was so wonderful and comforting.  They kept checking on me and I had more antihistamine, and we waited for the oncologist to show up. 

While I waited, I took some really unflattering photos to document the situation. So with my platelet issues continuing and chemo on hold, I continued radiation and kept hoping the platelets would rise. 

The whole plan was to continue with the 5/25 Chemo for six months or maybe a year. That's five days of a higher dose and then 25 days off.  But my platelets were extremely slow to improve.  So much so that by the time they started to show an uptick, it was too late. 

My oncologist was on a vacation, and I had to see someone not familiar with my case who broke the news to me, no more chemo. As I had never seen her before, I didn't accept that and waited to discuss it at the next appointment with my oncologist. 

Unfortunately, he agreed with her. No more chemo.  And since they considered other chemo options would be stronger than the Temodar, I couldn't tolerate any more.  That was it.  I was stunned and unprepared for that decision. 

I left the oncologist's office and wandered the hospital, crying a little and unsure what to do. I didn't want to leave. 

Then I got angry. I went to the records desk at the hospital and ordered a full copy of my records so I could be prepared for a second opinion.  Then I went back to see the oncologist while I was still in the hospital.  I let him know I was really not happy and that he needed to write my boyfriend a note about this new decision for my treatment.  I think I scared him. 

I decided right then that I was not going to be a patient for the rest of the day. So instead of taking the medical taxi home, I took the bus to the train station.  And for the rest of the day I was not a patient.  

After that disappointing and difficult experience, I was on watch and wait: Technically, palliative care! We would still monitor with MRIs, but I was off medical treatment.  That idea really scared me.  But that's when I decided to really pursue alternative options, which is a topic for another episode.

So what did I learn? 

I learned I really need to take charge of my own treatment. Even when it's someone's job, I still need to be in control and informed. 

I learned that being a patient is only part of my journey. I'm a person first.  And as my life up until then was consumed with getting better through medicine, that was just the first try.  I would look for other options for improved health.

Thank you for listening. This has been Glioblast-O-Cast Episode 4. 

 

Theme music for Episode 004: “Good Mood Music” Alan Berlin.