On June 23 and 24, I had 3 episodes of the right-side spasming (mild seizures). The Neurologist prescribed Clonazepam that I am to use on a short-term, as needed basis. I took 3 doses and then stopped. I was too tired to work much on both the 24th and 25th. If I take a dose as I begin to feel an episode coming on, I may only need 1 dose. I have only had 1 instance of that occurring, since, on July 1st.
Because of the roller coaster ride in May, which left some doubt as to whether the tumor might be recurring, I had another MRI scan done on June 26. The oncologist reviewed it with us the same day, because I was to start the next round of chemo the following week. Well, he looked at it and saw what he interpreted as being evidence of tumor re-growth (YUCK). He 1) postponed the next round of chemo as he and the other doctors would need to consider shifting to a more aggressive treatment or a clinical trial, and 2) indicated that a full review of the imaging would be completed by the following Wednesday at the weekly Tumor Board meeting. He promised to call as soon as the meeting was over. This was really pretty depressing to us and to the few people we shared the information with. I was also angry that this was happening, as I have remained convinced that the cancer was all removed last summer. Susanne and I left his office and stopped by the lakeshore to process our emotions and concerns. We decided not to do a broadcast message or blog posting, however, until after the Wednesday meeting so we could share the treatment options along with the expected bad news.
You can imagine the elation (and consternation!) we experienced when the doctor called on Wednesday and told us there had been an error made with the MRI…too much contrast was injected (I think of it as an over-exposed negative) which caused formations that weren’t tumor to look like tumor. It looked much worse than last month’s scan. So, the end result was good news, but it was another emotional roller-coaster ride….yikes!
We have now requested, for subsequent MRIs, that they wait to give us results until all the doctors have reviewed the images and have a consensus agreement. The oncologist agreed that this would be a good procedure to follow for all patients. Given Susanne’s strong interest in identifying an issue and accomplishing systemic change to prevent the issue from reoccurring, she was delighted with his willingness to consider this change.
Due to the brain swelling the doctors keep seeing on my MRI’s and the decrease in right side functioning I’m experiencing, as well as the increased seizure activity, the oncologist has put me back on steroids. While we don’t like some of the side effects, I am already noticing an increase in mobility. And, I do like the side effect of increased energy! I’m also now scheduled to begin round 5 of the chemo on July 7-11.
In the midst of this roller coaster ride, we proceeded with our plans to travel to Dayton for our granddaughter Karida’s 4th Birthday party. We obviously had to share the news with the gathered family but stressed that we would have final word on Wednesday. We put that behind us as best we could and had a wonderful time:
1. Karida spent 1 night and much of the next day with us at our hotel.
2. Finally got a picture of Michelle, Karida, and, Hooman..
3. Also got a picture of my son, David with both Karida and his son Aidan
4. Here’s some other photos of the party.
It just so happened that Michelle was planning to drive to Cleveland anyway on Wednesday to do a car swap with David. She and I had a delightful lunch together and she stayed for the doctor call. The three of us went out for a celebration dinner before she headed home.
On Monday evening, June 30, Susanne and I attended a special presentation at The Gathering Place focused on brain tumors. The presenters were from The Cleveland Clinic. We learned a lot about why it is so complex to treat these tumors. We were also encouraged by meeting someone who is a 5-year survivor of glioblastoma. He and his wife both looked very well!
1 comment:
The rest of the story….
AHHHHH!!! Craig sounds so calm when he tells his story. I’ve been sad, angry, pissed at the MRI tech, frustrated with the doctors, crying, continuing with getting our affairs in order, and working on acceptance. With the news that we weren’t dealing with tumor re-growth, I sort of went numb. It was disorienting to shift from one mode to the next. So, we were clear – no more of this nonsense. My support group members always complain about the anxiety of waiting for test results, but getting false bad news is worse. It’s way too hard on everyone. The next MRI on August 18th is set up differently, so we won’t get the results until August 21.
We had debated earlier in the week whether to go to Dayton. Craig hadn’t hardly made it to work all week, and the seizures and subsequent exhaustion had us telling Michelle that we were uncertain about coming. Once we had the bad news, however, there was really no question…we were going even if it was difficult. It was a good decision. It was an uplift for us to go, and Craig’s system stayed calm. It was the first we had Karida overnight since November, so it was fun. I had a hard time not crying at the end…in the space we were in, I was wondering about Craig being there next year. And we had to tell David and his wife Christina that we can’t be counted on to baby-sit Aidan. So, it was emotionally difficult, too.
We really like Craig’s oncologist. While I was frustrated with him, it was easy to forgive the error, because he was apologetic, clear in his explanation, not arrogant about it, and humble about being in learning mode as he strives to learn how to best serve neurology patients.
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