Wednesday, February 17, 2021
I will first start with Brad's latest blog. Grab a tissue you may need it.
Say I Won’t: Continuing to Defy the Stage IV Cancer Statistics
Journal Entry by Brad Hook — 46 minutes ago
It has been quite some time since my last post with my updates coming via Facebook over the last few months. To get this post started, my song of the moment, and it’s a powerful one, Mercy Me “Say I Won’t”:
“I can do all things,
Through Christ who gives me strength,
So keep on saying I won’t,
And I’ll keep proving you wrong
I’m going to run,
No, I’m going to fly,
I’m gonna know what it means to live,
And not just be alive,
This world is gonna hear,
‘Cause I’m going to shout,
And I’ll be dancing when circumstances drown the music out,
Say I won’t”
I’m at 57 cycles of chemotherapy, 33 radiation treatments, and 3 surgeries now. I have been on strong systemic chemo since the beginning of October (8 cycles of FOLFOX + Avastin and now 2 cycles of FOLFIRI + Avastin) in hopes of stabilizing the metastases on my liver. To my knowledge, based off my November scans, we have achieved stabilization. My CEA (tumor marker) has held fairly steady since Thanksgiving, being 58 at the time and 71 at the moment (well above the 4.2 it was at post-surgery in July). I underwent 5 rounds of intense radiation on my bone metastasis at the beginning of January. Outside of nightly fatigue (it knocked me down good!), it was non-eventful side effects wise. The hope is that my scans in early March in NYC will show shrinkage and that it is now under control. In terms of the chemotherapy, I had to stop the FOLFOX after 8 cycles as the allergic reaction I was having to it (my face would turn really read) from cycles 2 through 8 was progressively getting worse to the point where during the 8th cycle my blood pressure dropped to 90/58 and my blood oxygen to 75% 30 minutes into the infusion (the reaction would always subside and I could finish the infusion, but the risk of me coding during my infusion warranted the change to FOLFIRI). With the FOLFIRI, I did 22 cycles of it at 66% while receiving the FUDR in my HAI pump, with it now being a full 100%. We will see if I end up losing my hair as FOLFIRI is famous for it! At the very least, per my oncologist, 20 cycles of FOLFOX (12 to start and the recent 8) is the most he has seen someone do at Saint Luke's, so I have a record under my belt!
Treatment aside, it has been tough mentally at times the past few months seeing so many fellow cancer warriors gaining their wings. The majority of these individuals are in their 30's and have kids just like myself. They also fall into the 2-3 year range of battling this despicable disease which is where I am at right now. Given my current situation with my CEA simply refusing to go down, I have to admit that thoughts do enter my head of how do we get from stable to shrinking the liver metastases down again. I hope to get the answer to that question with our upcoming visit to NYC. I have many options at my disposal including starting up the FUDR in the HAI pump again as long as we have kept things contained to the liver and we have the bone met under control. There are many radiation type treatment options as well that I have not even touched yet. And beyond that, there are all types of clinical trials out there testing new treatment options (one that I have noticed that is gaining steam via the City of Hope in LA, with a similar one at KU Med, is injecting a virus into the tumor directly to kill it). Which brings me to the title of this post, no matter what the circumstances, I am going to find a way to a liver resection. I refuse to be told that this is not possible and that I will remain inoperable - I am not sure how I am going to get there at the moment, but I trust that God has a plan for me.
Moving along, Emerson and Reagan are going to someday read my CaringBridge, and when they do, they will know that there daddy is one hell of a beast that pushed through treatment after treatment without complaint. They will recall the crazy amount of walking I would do in the evenings while watching TV after they went to bed to keep myself in shape to fight this monster (my 2020 final step count was 5,343,986 (an average of 14,641 steps a day)). They will recall me refusing to let my chemo infusions hold me back and, amongst other things, getting up on Saturday and Sunday mornings with everyone else on my chemo weeks to be with them and make them a delicious breakfast, play video games with them, and just enjoy the day with them. They will know that I somehow managed to work full-time throughout all of this which helped us have a wonderful house and go on fun vacations together. They will know that daddy made the decision to get a permanent colostomy to get rid of a tumor with the only thought being that he loves his kids and family so damn much that he will do anything to beat cancer and continue to live life. But most of all, they will know that I refused to let cancer dictate my life or think it was going to beat me, because it won't, and I will continue to defy the statistics no matter what it takes for me to do it.
To conclude, it is impossible for cancer not to be on my mind any given day. I know God is in control and I just need to let him lead the way for me. Moreover, I know my purpose from this situation (or put differently, my calling from God given my situation), and that is to be a source of inspiration for everyone. I want people to know that no matter how big the odds, no matter how big the obstacle, there is a level of strength and determination inside of you that you may not know about until you are up against a wall and truly need it. Never, and I mean never, give up. Cancer has forced me to live life to its fullest because I am not guaranteed, nor is anyone, tomorrow. As each day passes, I learn what it means to live life even more, so if I am going to "thank" cancer for anything, it is my new found appreciation for life.
As always, thank you for your continued prayers and support. I am doing well and I have got this!
Tomorrow I will get my post surgery visit to my doctor's physician assistant. Monday's appointment got cancelled due to the weather. Since the weather has gotten so cold, my knee has been hurting, and my sleep deprivation is getting worse. I grab an hour or two when I am on the CPM machine but can't sleep at night. Will have more news tomorrow after I come back from the doctor. First time out of house in two and a half weeks!