Sunday, March 29, 2020
Brad posted a new blog this afternoon, and after drying my eyes from the pride it get from his blogs, I share it with you.
Battling C Squared: Stage IV Cancer + Coronavirus
Journal entry by Brad Hook — 4 minutes ago
I had plans to write an entry at the beginning of the month after my last visit to NYC on March 9th, but as everyone reading this is aware, starting on March 11th when a NBA player tested positive for the coronavirus, our lives began to rapidly change and we are now living through a pandemic. I have had plenty of time to think out this entry as the world has shut down to prevent the spread of the virus, so here goes nothing with pouring my thoughts out into this entry!
To begin, hopefully no one has had to make any visits to the hospital lately, but if you have, the visitor policies in most cases have progressed to the point of not allowing visitors to protect everyone. For me, this meant doing chemotherapy on my own on Monday at Saint Luke's. When I arrived at the building, they took my temperature before letting me proceed and once I was cleared they handed me a mask to wear for my entire stay. In addition, as an additional protection, given I had been to NYC two weeks ago (at that time there were only 80 something cases in the state, 11 in the NYC itself), the cancer center put me in my own room away from everyone else for my infusion. I honestly enjoyed the extra privacy as it helped me work!
Now lets talk about NYC, the epicenter of the coronavirus and where I typically get treatment on a monthly basis due to my HAI pump. We have been very proactive with MSKCC to determine what my options would be treatment wise given the situation in NYC and it likely not being safe for us to there for my scan on 4/5 and treatment on 4/6. Initially, during the week of March 16th, we were informed that they were still planning to see me there to administer the FUDR into my HAI pump. As the situation got worse in NYC over that weekend, we again touched based this past Monday (the 23rd) and were told the same thing. This was not working for us so I inquired with Saint Luke's as to whether or not they could (a) obtain the FUDR and (b) would feel comfortable handling it and putting it in my HAI pump. They confirmed they could make it work for me. Moreover, per the FB groups that I am in, I have come to know a lot of people, and one fellow patient who has my oncologist (Dr. Connell) at MSKCC utilizes the Siteman Cancer Center (Washington University) in STL for pump flushes and has been given the thumbs up to do the FUDR there as well in the interim. With both those options at my disposal, we were finally able to make progress on Thursday with MSKCC and they are now working to get me set up as a patient at the Siteman Cancer Center in STL for both my flushes and the FUDR fill ups on an interim basis until it is safe to start going back to NYC for treatments. They would move my entire treatment to the Siteman Cancer Center in the interim to avoid having 3 oncologists / cancer centers coordinating my treatment, so Saint Luke's would temporarily be out of the picture (makes sense to us!). This may not be in place by 4/6, so in that case, I will just get a pump flush and my systemic treatment at Saint Luke's in KC. Overall, this is a positive development and we will hopefully know more later this week!
Treatment wise, my CEA (tumor marker) currently sits at 1.5 as of this past treatment on Monday, which is well within normal range. Since starting my new chemo regimen after my surgery, I have had 4 FUDR treatments in my HAI pump (two at 100% and two at 25% potency) and 10 cycles of the FOLFIRI along with it. My energy levels continue to be incredible and both my oncologists think I am a bionic man with how I am handling the FOLFIRI systemic chemo. As I have mentioned in some of my prior entries, my side effects have been the usual fatigue and stomach cramps, but the atropine I am given prior to receiving the FOLFIRI has helped out a lot with the cramps. The atropine does have the lovely effect of backing your system up, so typically it is a slow go of things Tuesday and Wednesday and then my body just unleashes on me Thursday and Friday as it empties out. Fatigue wise, the peak for that is Wednesday evening through Thursday afternoon but it is very manageable. I have a recovery plan of attack down that I hold true to each time and it keeps doing the trick for me so I am going to stick to it (hydration (128+ ounces of water day) + lots of protein (includes daily protein / nutrition shake) + exercise even on the days when I am fatigued)!
With that in mind, the accomplishment I am most proud of at the moment as I work through this current chemo regimen is staying true to my walking / exercise routine since the start of the year. Specifically, I have hit 10,000 steps every day since January 1st and I am currently averaging over 15,000 daily (450,000 in January, 469,500 in February, and as of yesterday, 450,000 in March). My goal for the year is to hit 5,000,000 steps, so I am well on my way at the moment! Walking / exercise has especially been important at the moment since it is just about the only thing I can do right now to get out of the house during this lock down!
This brings me to a phrase / quote that I found recently that really sums up my attitude towards cancer and pushing through the inconveniences that the coronavirus has now brought into the picture:
"I'm too positive to be doubtful, too optimistic to be fearful, and too determined to be defeated!"
My commitment to walking / exercise is definitely evidence of the amount of determination that I have inside of me. More importantly though, I am not letting this COVID-19 situation get me down and mess with my positive / optimistic approach to life and my cancer battle. I take the same approach to it as I have with Stage IV cancer; fear is a liar and I cannot live in fear of it. With everything I have fought through to this point to get to where I am now, this coronavirus stuff seems like a temporary nuisance that will eventually look like a blip on the radar once we get past it. I remain focused and continue to push forward in the midst of everything and look forward to seeing what my next scan reveals in terms of progress in knocking out these liver mets (my MSKCC oncologist still wants me to get one in the next few weeks even if I am not going to NYC so that she can see where things currently stand).
Finally, to include a song as well, Rend Collective's "His Name is Power" is most fitting for this C squared journal entry. Some of the lyrics:
"You're the only answer to the darkness,
You're the only right among the wrong,
You're the only hope among the chaos,
You are the voice that calls me on,
Louder than every lie,
Our sword in every fight,
The truth will chase away the night,
Your name is power over darkness,
Freedom for the captives,
Mercy for the broken and the hopeless,
Your name is faithful in the battle,
Glory in the struggle,
Mighty it won't let us down or fail us,
Your name is power"
God has been the power behind my relentless determination to take down my Stage IV cancer foe and I have come so far with him by my side and know that I will ultimately be writing a journal entry later this year to let everyone know that I have finally made it to liver resection and what was once thought not to be possible has become possible. In terms of the coronavirus pandemic, God is likewise the power behind us getting it under control, finding a vaccine, and just getting through this dark time. Nothing can stop an unstoppable God!
Lastly, please say some prayers for a fellow Stage IV cancer fighter that is undergoing the grand daddy of all cancer surgeries tomorrow (HIPEC procedure + stomach removal). He has come so far and defied all the odds to be where he is at today in his battle against this terrible disease. Due to the coronavirus situation, he has to undergo this surgery on his on own with no visitors and will likewise be in recovery for at least 2 weeks with no visitors (I am not sure if they will make any exceptions but that is my understanding). He has been an inspiration to me in my fight against cancer and this surgery should hopefully eliminate any cancer that he currently has in his body so that he comes out on the other side with no evidence of disease.
Stay strong and well everyone and thank you for the continued prayers and support.