There is so much enlightenment that comes as you get closer to the end of anything. Yesterday, Dr. Issa sat with us to discuss the incident we experienced last week with the Seizure. The world has a lot to learn from the care of and way cancer doctors approach their patients. Taking in all the test results and looking at the overall case with Michele he was able to tell us that it is highly likely we can skip Cycle 8 all together and move on to Maintenance. We have a referral for radiation treatments coming.
Even behind the mask, you can tell he is smiling and gentle.
What does this all mean? We will start Cycle 7 on June 23. We hope that this will be the last time that we will need to be in-patient. 5 more days locked in the halls of MD Anderson. Many years ahead of making our way to the medical center.
Blessings in the waiting room
Yesterday we sat in the waiting room after doing her blood work. We got to talk to the couple sitting across from us and discovered that not only do they live minutes away from us, but they have a Home and Commercial Insurance agency and have been in business for a very long time. He has a different form of Leukemia and has had it for 19 years. Never had chemo or symptoms. They were there for a checkup.
With us being veterans of the Blood Draw, we should have been there 1.5 hours earlier, but we knew that we could just show up late and it would be fine. Had we been on time, we would have missed an opportunity to meet them. The community that plays out in the waiting room is an excellent phenomenon of this place. Everyone wants to know what you are “in for”.
I wanted to wait for some time to pass before I shared more about the seizure. I imagined that a seizure would be an instant reaction to something, a switch would turn off. It was not like that at all. It was a slow slipping of the conscious over 24-36 hours. It showed up as confusion and a slipping away of communication. Sunday morning, she was able to eat her breakfast on her own but was very subdued. I intentionally let her feed herself and drink her drink. I was looking for signs of whether this was simply a fog or if she was losing other facilities.
I knew the doctors would run a barrage of tests to determine what was the root cause of what we did not know was a seizure yet. Michele showed me a text conversation she was having with a friend on Sunday where she was still aware of what was going on. She knew she was going to get a cat scan done and that what she was in was scary.
Being a Holiday weekend, things were slower. Over the next 48 hours we had a tremendous amount of blood drawn, a cat scan, and MRI, and a chest Xray. All were coming back as clear.
It was Tuesday when we had the EEG done. Outside of the doctors that work at MD Anderson, there are other technicians and specialists that are simply the best in their field. The gentleman walked into the room with the equivalent of a high school AV cart. Complete with a computer, screen, a camera, and the Gadget to hook all the wires to her head. We were talking and he said he has been doing this for 40 years. Interned in high school for it.
After 5 minutes running the screening and texting back and forth with one of the doctors he just says simply, that is a Seizure… get some Ativan! He in the nurse got into a little argument about the dose that our doctor wanted, but they were also both working quickly to get it in her. Three minutes after the dose, her eyes were open. Incredible.
I mentioned this in a previous post but go watch the movie “Awakenings” with Robin Williams. It is the closest thing I have seen to how this process worked. As the Tech explained, it was not that she was unconscious, but more that her brain was working at a very rapid speed. We all have experienced this with computers that are locked up with 100% CPU, Memory, and hard drive activity. That is what was happening.
She does not remember anything while she was in this state. Which is a blessing.
Back to the light
When you have a cancer as aggressive as ALL, the world must stop. Since October, so much of our world has had to adapt around us working through this cancer. With exceptional timing, our lease for the office space was up at the end of January. We were able to downsize appropriately and learned how to work from our home again. In the first two months, we suffered setbacks with our revenue so that we had to reset expenses to adjust to our new scenario.
We have learned to adjust to the good days and bad days that we have. I shared the video of Michele working all day the Friday before we started the downfall on Saturday night. With Cancer, you must listen to your body and be ready to adjust. There are days where I find her working and then a little while later crying, fighting the fatigue and sadness that comes from not being able to work when you want to.
We have found some relationships strengthened in this process and others that we have agreed to let be what they will be. making space for the positive message we must bring to the world. We are all human and going through our own stuff. Not everyone can be on the same page as us. It is not right or wrong, simply different. We are crafting our next story.
The light of having another 45 days of the heavy stuff is a beautiful thing. If we have made it this far, and through the last two weeks, we are destined to do even greater things than what we have accomplished thus far in life.
Michele and I are excited again. Ready to be a force to be seen and have impacts on others. We have been reset, free from the constraints we have had in our own minds.
Love has been a major key
I think as we look back on all our life’s trials and challenges, this has been more a testament to our love than anything else. We have our days where our tempers are short. We have our days where we know that we are at a low point. We have our days in laughter at some silly things that only we would get, an inside joke.
Love and devotion are clear to us now. We are glad we did not have any foreshadowing on how tough these last nine months would be. Even if we did, we would not have missed it for the strength it has given us. May the world be ready for the next chapters to come.