Ahhh, the long awaited update! I was having such a good couple weeks I didn't even want to sit down and write. The last update was a little doom and gloom- so I should have sent something out right away as a follow up. Despite the kind of crappy news we left Mayo with about chemo not working we were able to make it home in time for birthday celebrations and the fourth of July! Funny how things work out when you just let go and let things happen. When we found out about our return dates to mayo and the "plan" I was so worried about missing Rylie's birthday or being in a chemo coma for it. I spent pointless energy worrying and analyzing everything about our trip in June/ July. Turns out it was exactly that- worthless loss of energy......neither happened. Instead we made it home and both celebrated our birthday surrounded by great friends. Guess I am still learning how to just let go of control.
Just as we were wrapping our head around the next attempt to attack this disease, we had to shift gears again…..
Shortly after the holiday weekend- on Tuesday night July 6 I got a call from 507! Mayo was calling! I was surprised when I answered to hear the Greek Accent of Dr Dimou. We had a virtual follow up scheduled for the next morning, I couldn't understand why he was calling at 5pm. Well it turned out that after further review of ALL the MRIs there was enough hope that chemo and immunotherapy may be more effective than previously thought after the Pet review. He wanted to cautiously proceed with both and that would have to be the NEXT day!!!! Say what??? (Because the treatment is given over 3 consecutive days- If we didn’t make it happen the next day it would have to be another week which would have put me at 5 weeks- not good.) of course we had just booked Busch Gardens tickets and Eric took off work to go with us And let’s not forget it was 5pm….. How would we even get in touch with oncology here and get scheduled on short notice after hours? I know you can already guess who got shit done???? Yup The “Ring Leader” Rafe. A quick text and phone call to Dr Franzman and BAM! I was on schedule for the next morning to start round 3! The treatment went well without too many side effects this time. I was even able to make it (with the help of sooooo many people on so many different levels) to watch Rylie swim in her Championship meet that weekend where she kicked butt!!!!
One week after round three I was 6 weeks post op. I was FINALLY able to submerge in the water. As soon as my chemo coma wore off that is exactly what I did. DAMN it felt good. The Epsom salt soaks, the pool, the ocean- all of it. I jumped in the pool for my first swim workout fully expecting to do no more than a 15 min swim, maybe 400 meters but my body did not disappoint. I couldn’t believe it- I just kept swimming. I felt like Nimmo. 45 minutes later, no stopping and a 50 meter sprint at the end topped me off at 1750 meters. No Olympic record by any means but not as horrible as I expected. There were so many mixed emotions, shocking right? How on earth could my body actively attack me with this stupid cancer and still perform like I missed no time at all? I mean seriously, this is not a bragging moment of any kind- it’s a valid question- and I don’t know if it's scary or incredible- Maybe both. I spent the next few days/weeks just absolutely soaking in life. I went for sunrise dips in the ocean and sunset walks along the bay. My sister came for her annual summer visit with my nephews, my college roommate came for a weekend and We made a family trip to Annapolis for our 19th wedding anniversary! We were actually there for Dylan to participate in the Naval Academy baseball showcase event but turned it into a mini getaway. It was all the little things that made my heart so happy all month.
I started Acupuncture. So many people ask how it’s going? Do I like it? The answer…. I have no idea. How do you know? I like the concept. I’m excited to incorporate some eastern/ alternative medicine and I am hopeful it will work. The doctor did say something that was super interesting. When she walked in the other day she mentioned how she was happy that I was in that particular room because of the picture on the wall. It was a photograph of Half Dome in Yosemite. She said that she often envisions me happy on a mountain like that…. She followed that up with reminding me of the importance of visualization. Visualization, According to the Cambridge Dictionary, is “the act of visualizing something or someone” or “forming a picture of it in your mind”. It’s almost like looking through a particular lens, your unconsciousness, your imagination, your deepest desires, and seeing your life unfold within your inner eye. I ask anyone reading this to visualize me healthy. I’m going to add that into my breathing exercises, it can only help!
Last week was chemo round 4…..the final round. It was like round 2, it sucked and I rang the stupid bell again. End of story. It’s weird to celebrate the “finish” of chemo knowing that I still have cancer. But it was a milestone and it was “celebrated”.
I did run for the first time last week and as awkward as it felt and most certainly looked- I did it! It was pathetic and so awesome. I went out for a jog around the court and 25 minutes later I went around enough times to make 2 miles. Little wins people, Little wins.
This week, 5 days after chemo ended I had my Pet Scan. And this is where, once again, things get complicated. Here it goes…….
Now let me start by saying that I have NOT had my official Mayo Follow up but did see Dr Franzman Wednesday and he had been in touch with Dr Dimou over the past few days. I know this is all “shocking”….. But the results are once again MIXED. I am fairly certain the radiologist locally crapped himself when he compared apples to oranges. The last Pet scan here that they could compare this one to was from February and we all know a lot has changed since then.
These past two Pet scans I felt confident they were going to show significant improvement and after each one I was mistaken. Don’t get me wrong, there are some things that have improved so I am going to keep focused on that. Also, I am choosing to only really look at the reading Mayo did from Monday because that compares June to August but not the same technology…. So even that is not apples to apples.
Dr Franzman did have the report from Mayo and it shows that there are sights with improved activity (refers to as SUV max levels) sights that worsened and sights that have stayed the same. As mentioned last time, size can not be measured with PET. I am currently scheduled to have several MRIs at the end of the month. They will be imaging my Cervical spine, Thoracic spine, Lumbar spine, pelvis and both femurs. Because of the amount of time it will take to scan that many areas it will have to be done over two days and be separated by one day in between. That is scheduled for August 25 and 27. It will not be until we have all those results that we will have all information. In the meantime, per Dr Franzmans consult with Dr Dimou, Immunotherapy Will continue on August 23….. busy week!
Everyone always asks how we are doing- we are doing as best as we can. Eric has been incredible and is the most positive person I know. He’s obviously had to carry a lot the past six months so he is exhausted on so many levels. Please pray for him. For him to stay positive and strong for all of us. Pray for his faith to stay strong and steady. The kids are exceptional. We have not and still do not hide anything from them. I know they are scared but I also know they are optimistic. We continue finding humor in everything but are not afraid to cry together too. I just don’t know how they have managed to do so well academically, athletically, spiritually and personally through all this. I think they are doing better than I am. I feel like I am entering a bit of the angry stage. Up to this point Ive rolled through the punches but lately I have been getting pretty angry about having to go through all this. I meet with an Integrative therapy doctor at Mayo (virtual) next week and look forward to hearing her thoughts on options and other therapies available.
I’m going to make the take home for all this to just be positive- at least Try to. The positive is this- I’m not in pain, I am getting stronger, some areas are improving, my sodium has been controlled on same dose of medication since February and most importantly there are no NEW SPOTS. Cheers to that!
