Just got back from my oncologist appointment. As he heard very slight crackle at the base of my lungs, indicative of possible lung disfunction due to Bleomycin, we agreed to cancel my last chemo infusion, so, as of today, I'm done with chemotherapy infusions. Strictly speaking, I'm not done with chemotherapy as this third cycle won't be complete until Day 21, which is July 7th, and more importantly, the Cisplatin I received last week is still floating around my body and will be so for quite some time. I continue to experience nausea, weird sensations and slight side effects from the treatment like clumsiness (related to the platinum eating nerve endings in fingers and toes).
Diane managed to get me to walk a mile, yesterday, which, to be honest, felt awful, but I know was good for me. I look forward to continuing to build my health from there.
The doctor and I discussed what is next in store for me, both (1) follow-up/monitoring and (2) getting back in shape. For the former, I have scans at the end of the summer to detect any remaining tumors. We killed the idea of a PET scan as none of my tumors were large enough to justify the scan nor the exposure to the additional radiation. So, assuming those come back negative (no reason to believe they will be otherwise), we reset my status to Year One and start whatever the standard observation schedule is recommended.
As far as getting back in shape, after a blood test in a couple of weeks just to be sure my blood levels return to normal, I plan to resume bicycling. Nothing crazy, just something to ease my way back into the biking life. In the meantime, I will walk, run and swim until I feel strong enough to endure a CrossFit session with Nate Helming. Perhaps, it's possible I'll be in shape enough to do a Sprint Tri by the Fall, if I can find one.
The last bit is going to be a bit more complicated, trying to figure out what the heck all of this business did to me. I look forward to spending the summer rebuilding my body while building my company. I've received great support from friends and family. Thanks to all of you for your words of wisdom, food for the family, texts, and emails.
Thursday, June 27, 2013
Saturday, June 22, 2013
It's 2 AM - Do You Know Where Your Cancer Patient Is?
Yesterday, or earlier this morning depending upon how you feel like counting, I received my last dose of heavy chemotherapy drugs. No more Cisplatin or Etoposide Phosphorous pouring into my veins. I have two more weeks, two more days of infusions of Bleomycin. Really, all of these drugs are pretty heavy duty, some are just heavier than others. As part of the pre-infusion treatment, I'm given a steroid. It's that steroid that has me up at 2am.
I've been up at 2am every night this past week and was so every night my first two cycles of treatment. They've given me drugs that can help calm me, but I'm leery of side effects and trade a little bit of exhaustion for a reason to nap in the afternoon. Where we currently live, the water should be filtered before drinking, and the kitchen fridge has the only filter. So, I sleep on the living room couch, makes trips to the first floor bathroom and do my best to take in fluids, graze from the refrigerator and keep the nausea at bay. The classical music cable station sometimes helps. I'm always tired by 5am.
This last cycle is a strange one. I seem to tolerate it better and am not sure why. My kids comment on it and they don't miss a beat. One cannot discount the psychological impact of that light at the end of the tunnel. On the other hand, I really muscled through Cycle 2. During Cycle 1, I went to the ER 4 times (twice during the failed start and twice during the reboot). I resolved to have no ER visits the second cycle and laid on the couch through Day Eleven. By that day, my lungs were slightly bubbly at the bottom, a possible sign I was reacting poorly to the Bleo. I mentioned to my oncologist my very lazy week and we agreed it could possibly be a very slight pneumonia. A chest Xray was ordered for a few days later.
In the meantime, not wanting to make myself any more sick, Day 12 I walked a mile. Day 13, I walked three miles. Day 14, I swam 500 yards (10 x 50 yds). That swim wiped me out; I knew it when I sat down, then laid down on a bench with my eyes closed and the world was spinning. 500 yards used to be a good warm up or light work out - not that day. My Xray was scheduled for Monday (Day 15), so I ran 1.5 miles beforehand, I wanted to clear my lungs of anything over which I had control. The test came back negative. Great! I could continue the Bleomycin because I did not want a fourth round of EP (heavy chemo), for sure. I ran 3 miles on Day 20, then swam a half mile on Day 21. Pre-Cancer Therapy Andy called that a light exercise week. Chemotherapy Andy considers that a sound recovery week.
It also helped to have two great business meetings for the startup (Route Vu). My brain still functions, if not at tip, top levels.
So, here I am, it's 2am, and I wonder how the next few days will go. In the past two cycles, these have been the worst days, for sure. Perhaps, I'll try to get out and walk a little bit. Nothing hard or exciting, just move the body and see how much I tolerate. We know walking is the single most effective thing anyone can do to help their health, if they are unable to do anything else.
My prognosis remains very, very good - nearly 100%. In four to eight weeks, I will have a PET scan to search for any remaining metabolically active tumors. After that, we will set a follow-up observation schedule spanning years perhaps a decade. Most importantly, I should be done with all of this nasty business.
Despite my weakened state from all of the poison, I am buoyed somewhat by the prospect of never having to physically deal with this disease, ever again.
I've been up at 2am every night this past week and was so every night my first two cycles of treatment. They've given me drugs that can help calm me, but I'm leery of side effects and trade a little bit of exhaustion for a reason to nap in the afternoon. Where we currently live, the water should be filtered before drinking, and the kitchen fridge has the only filter. So, I sleep on the living room couch, makes trips to the first floor bathroom and do my best to take in fluids, graze from the refrigerator and keep the nausea at bay. The classical music cable station sometimes helps. I'm always tired by 5am.
This last cycle is a strange one. I seem to tolerate it better and am not sure why. My kids comment on it and they don't miss a beat. One cannot discount the psychological impact of that light at the end of the tunnel. On the other hand, I really muscled through Cycle 2. During Cycle 1, I went to the ER 4 times (twice during the failed start and twice during the reboot). I resolved to have no ER visits the second cycle and laid on the couch through Day Eleven. By that day, my lungs were slightly bubbly at the bottom, a possible sign I was reacting poorly to the Bleo. I mentioned to my oncologist my very lazy week and we agreed it could possibly be a very slight pneumonia. A chest Xray was ordered for a few days later.
In the meantime, not wanting to make myself any more sick, Day 12 I walked a mile. Day 13, I walked three miles. Day 14, I swam 500 yards (10 x 50 yds). That swim wiped me out; I knew it when I sat down, then laid down on a bench with my eyes closed and the world was spinning. 500 yards used to be a good warm up or light work out - not that day. My Xray was scheduled for Monday (Day 15), so I ran 1.5 miles beforehand, I wanted to clear my lungs of anything over which I had control. The test came back negative. Great! I could continue the Bleomycin because I did not want a fourth round of EP (heavy chemo), for sure. I ran 3 miles on Day 20, then swam a half mile on Day 21. Pre-Cancer Therapy Andy called that a light exercise week. Chemotherapy Andy considers that a sound recovery week.
It also helped to have two great business meetings for the startup (Route Vu). My brain still functions, if not at tip, top levels.
So, here I am, it's 2am, and I wonder how the next few days will go. In the past two cycles, these have been the worst days, for sure. Perhaps, I'll try to get out and walk a little bit. Nothing hard or exciting, just move the body and see how much I tolerate. We know walking is the single most effective thing anyone can do to help their health, if they are unable to do anything else.
My prognosis remains very, very good - nearly 100%. In four to eight weeks, I will have a PET scan to search for any remaining metabolically active tumors. After that, we will set a follow-up observation schedule spanning years perhaps a decade. Most importantly, I should be done with all of this nasty business.
Despite my weakened state from all of the poison, I am buoyed somewhat by the prospect of never having to physically deal with this disease, ever again.
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