Friday, November 08, 2019
Brad posted his CareBridge blog today explaining in more detail his treatment, and I am so proud of him. He grew into a awesome son, who I am so proud of. Well enough of me here is his words:
Chemotherapy Cycle #27: New Regimen of Floxuridine (FUDR) + FOLFIRI
Journal entry by Brad Hook — Nov 7, 2019
"The giant in front of you is never bigger than the God that lives in you" (Christine Caine)
I would like to begin this post by thanking everyone for all their prayers, love, and support leading up to and after my HAI pump placement / gallbladder removal surgery! We are blessed to have such a strong support group as we continue on this journey. In addition, I failed to mention in my previous post that prior to traveling to NYC for surgery, my co-workers organized a show of support for me by handing out blue ribbons to wear to those within my department and anyone else at the company that wanted to wear one. It meant a lot to me as I prepared for this huge step in my treatment!
With that in mind, it has been a busy few weeks to say the least! The surgery was a success and the HAI pump passed all tests during placement and after surgery for purposes of functionality. Specifically, during surgery, once they had everything placed in me, they shot a dye through it to make sure it traveled through the catheter straight to my liver and not any other organs. Then, two days after surgery, I underwent a 2 hour scan where they injected isotopes into both my main port in my chest and then into the pump itself to make sure everything still traveled through the catheter into my artery and then to my liver. They do this because there is a very small possibility, around 5%, that the artery where they place the catheter will form a clot and block things off rendering the pump useless more or less. Thankfully, mine was fully functional after testing.
Recovery wise, I had the mindset that I would be able to bounce back pretty quick, but I have to admit I exceeded my own expectations going into surgery. First of all, they push you pretty hard in the hospital to get up and move after surgery. The day after my surgery (Wednesday) they got me out of bed to start walking at 6 am. They wanted me to do at least a 1/2 mile around the floor that day, which equated to 6 laps. I broke the 6 laps up into 3 walks, starting with 1 lap for the first, 2 for the second, and 3 for the third. Also worth noting, I apparently impressed the hospital staff with the amount of urine I produced while in the hospital (something like 2500 ML with the catheter in and then another 5000 ML / 5 liters after they removed it Wednesday morning). That was a result of the amount of liquids they pumped into me during surgery as well as all the water I drank afterwards for hydration purposes! The original plan was to discharge me on Friday, but based on how I was progressing, Dr. Kingham told me on Thursday morning that I was too healthy to be in the hospital and that I would be discharged later that day. We were happy to hear this news since sleeping well in the hospital was almost impossible. From there, we stayed at the Hope Lodge which was located near Madison Square Garden. It felt good to return to my normal vitamin regimen and to be able to walk around the city rather than just the hospital floor. By Sunday, I was able to stop taking pain medication. I also walked a total of 2.5 miles for the day which felt fantastic! We were ecstatic to return home on Monday to see the kids and get back into our normal routine. My initial plan was to return to work last Wednesday, but I woke up on Tuesday morning feeling pretty good, so I decided I would just show up at work and surprise everyone. All in all, I think I achieved my goal of getting back into my normal routine as quickly as possible!
Moving along, this Monday was my follow-up appointments in NYC as well as post-surgery CT scan. We woke up at 3 am in the morning for our 6 am flight, landed at 10 am (they did not have a gate for us so we had to get off the plane via the steps and take a bus to the baggage claim which was a first!), and arrived at MSKCC at 11 am. From there, I had my blood drawn (11:20 am), saw the oncologist (12:40 pm), saw the liver surgeon (1:20 pm), had my HAI pump filled (2:30 pm), and then had a CT scan to set my baseline going into this stage of treatment at 4:00 pm (I had to do a prep before it at 3 pm). Once all that was complete, we jumped back on a plane at 6:30 pm and were back home at 10 pm and very much ready to sleep at that point. Back to the follow-up visits, thankfully my blood work was fantastic (i.e. liver enzymes were normal, hemoglobin and platelets had bounced back up, etc.), so I was able to get my HAI pump filled with floxuridine (FUDR) for the first time. Dr. Connell, the oncologist, is simply amazing and made us feel at ease about these next steps of my treatment. Specifically, my new regimen is the FUDR via my HAI pump and FOLFIRI via the port in my chest (5-FU, leucovorin, and irinotecan). I will start on the FOLFIRI my next visit to NYC on 11/18. Thereafter, I will receive FOLFIRI every 2 weeks whereas I will receive the FUDR once a month (in between, there is maintenance for the HAI pump which is just having the excess chemo pulled out and having it filled with saline and heparin). I will receive 2/3rd's the normal dose of irinotecan in my FOLFIRI regimen given it is in addition to the FUDR. It is worth noting that the FUDR that is delivered via the HAI pump is anywhere from 200x to 300x the concentration of the chemo that goes through the port in my chest, so it is highly toxic. Not to worry though, Dr. Connell will monitor my liver enzymes, billirubin, and other indicators of liver function, plug them into an algorithm, and determine the proper dosage of FUDR each time. FOLFIRI wise, I am not sure what to expect in terms of the intensity of the side effects, but I presume there will be some fatigue and perhaps diarrhea given it is famous for it! I will have a CT scan done every 2 months to check on the effectiveness on the treatment and, if all goes according to plan, to determine when I am set for liver resection.
Let's talk scans now because I have had a ton of them lately! Specifically, I mentioned in my last post the CT scan and MRI that I had prior to surgery. I also had one on Monday to set my baseline for treatment. I am thankful that my CEA only increased slightly from 6.4 to 8.9 while I was on my chemo break for 6 weeks (this was to be expected). In addition to the increase in my CEA, Dr. Connell indicated to us that the result of the CT scan would likely show some growth in the liver mets due to the chemo break as well as surgery sometimes causing things to flare up. This put us at ease going into the CT scan as we knew what to expect when we got the results. And, as expected, when the results were posted in the portal today, there was a slight increase in the size of some of the liver mets, but nothing new outside of that (i.e. the cancer did not spread and there were no new liver mets). I am very thankful that I got a 6 week break from chemo and things stayed under control during that time. At the same time, however, it made me realize how fast the cancer can flare up and get out of control. Within a 2 week period between CT scans, I went from the liver mets being stable to some, mainly the larger ones, starting to grow again. It humbles you to see this and makes you realize that you cannot take your foot off the pedal for one second when it comes to taking cancer out.
To put things into perspective, this is where I currently stand as I undergo chemotherapy cycle #27:
The rectal tumor has decreased in size and the radiation will continue to eat away at it for a few more weeks. Thereafter, the FOLFIRI will continue the attack on it. As it now stands, per the MRI, it is a still a decent size but is a mix of scar tissue and residual tumor. There is one lymph node involved which was likely present on my CT scan in April but was missed in the analysis (it likewise is showing signs of improvement). Lastly, the MRI mentioned a small spot / lesion on my left sacrum which is likely benign (nothing to worry about, may be a source of the back pain from the summer, maybe not, just something they noticed more or less!).
The 15-20+ liver mets are now being attacked with the FUDR via my HAI pump and starting 11/18, FOLFIRI. Nothing new has emerged over the past year since I was diagnosed. With this stage of my treatment, the goal is to push my liver to the limits with very intense chemo to shrink the liver mets to a point where I am operable and can get a liver resection. We will know more on the effectiveness of this treatment in late December / early January when I get another CT scan.
Starting 12/16, Saint Luke's in KC will be handling the maintenance on my HAI pump so that we only have to travel to NYC once a month to have the HAI pump filled with chemo.
Going forward, I am not sure on the approach to the surgeries I have remaining to hopefully rid my body of the cancer that remains and get me to no evidence of disease (NED) status. What I do know is that the rectal tumor will be removed at some point and that 2 liver resection surgeries are required to clear up the liver. As this stage of my treatment progresses, we will get better clarity on everything. For now, we will focus on the chemo doing its job and setting me up for those future surgeries!
As you can tell by all the information in this post, my cancer, while under control, is still quite the beast / giant. I will try not to rant, but one of my biggest pet peeves as I continue on this journey is reading articles that indicate you either win or lose against cancer solely based on the medicine working or not. The articles go on to say that someone that beats cancer is really not a fighter or a warrior, rather they are one of the lucky ones that had treatment work for them. To view it in any other manner is demeaning to those who ultimately die from cancer because it suggests they did not fight hard enough. While it is true that the medicine has to do its part, from my perspective, there is much more to it, including (a) having a positive outlook / attitude and believing you can beat the cancer and (b) taking care of yourself in terms of diet and exercise to ensure your body is strong enough to keep fighting the cancer. There is a fighter / warrior mentality piece to it because you can choose to pity yourself and feel like a victim or stand up to the cancer and not let it dictate your life. I am fully aware of what I am up against right now and that beating the cancer is not a given. With that said, I take it one day at a time, I continue to stay positive as I have been all along, I continue to take care of myself and exercise and push myself on a daily basis to maintain my strength, and most importantly, I continue to believe that the God within me which is bigger than the giant that I am facing will make a miracle of me as long as I listen to him and follow his guidance, no matter what path that takes me down and no matter how much pain and suffering it puts me through. In the end, whether I succeed or not (and trust me I fully intend to beat this beast no matter what it takes), I will know I gave it my all and hopefully inspired a lot of people along the way, so whatever God's plan is for me, so be it. I will at least be able to say with confidence that I did not sit back and just hope the medicine did the trick for me, rather, I lived life to its fullest and did not let cancer dictate it or strike fear in me. And for that reason, I will consider myself the winner of my battle against cancer no matter what the outcome because I chose to be a fighter / warrior the entire way.
As always, thank you for your continued prayers and support, they continue to work their magic and we are so blessed to have you by our side as we continue on our journey.