Last week I had another CT scan. This time the tech at Kaiser got my IV placed correctly, so no radioactive biceps. The most exciting thing about the scan was that I had to drink two barium smoothies before, which I discovered creates an astonishing amount of gas. The dog was barking every time I let one rip, so he thought it was exciting, at least. For me, the best part was getting word that the scan was negative for any tumors or metastatic activity. Four hundred days into my complete response, I continue to stagger into the light.
Today I discussed with Dr. Hahn my options regarding ongoing treatments. I have three options:
1) I can suspend treatment now and resume it should there be any new metabolic activity. Dr. Hahn and I agree that there is no compelling reason to do so, absent some autoimmune disorder that suggests my body had had enough nivolumab.
2) The second option is the default: end the trial on schedule in February 2017, two years after I started. I learned today that the determining factor is the passage of time, not number of infusions. Because I skipped at least one infusion due to lung congestion, and extended the time period between infusions by a few days for several other infusions, I'd get only 46 infusions instead of 48. After the infusions are done, I'd still be monitored with regular CT scans to see if there is any new metabolic activity.
3) Continue getting infusions after the scheduled end of the trial. In some cases, the trial sponsor (Bristol Myers Squibb) will agree to continue providing the drug to trial participants to see if the patients continue to tolerate the drug, whether it continues to have a benefit, and whether there are eventually some side effects. I'd want some more information about what has happened to the other guinea pigs who have done that, but the data just isn't there. As the clinical trial nurse said, "you are the data."
I'm leaning towards door #2, but will have months to check out option 3.
As usual, the Hopkins pharmacy was late in getting the compounded drug released. I finished at 4:30 pm, perfect timing to hit rush hour traffic in both Baltimore and DC. I passed the time on the drive talking on the phone with my mom, then brother, then sister. I'm not that fond of talking on the phone while at home, but don't mind plugging in the headset and chatting while behind the wheel.
Speaking of being behind the wheel, now that our nest is empty, Jennifer and I are talking more seriously about getting an RV a pickup truck and fifth wheel) and touring the continent. We'd like to sell our lake house first, but meanwhile I've been learning more about the options available. It's fun to do, and with the ever-increasing likelihood that I'm not going to die in the next few months, it's a dream that might even turn into a reality.
Tuesday, July 26, 2016
Tuesday, July 12, 2016
CR 386: Garrett to the MTC, 35th infusion
The past few weeks have been a whirlwind as my youngest son, Garrett, graduated from high school, then rapidly shifted gears to prepare for his two-year assignment as a volunteer missionary in eastern Utah
and western Wyoming. We did a lot of shopping for clothing and supplies, and he tried to get his fill of video games, knowing he would not be able to play for two years. We spent time with my folks, went down to Lake Anna, and watched the Fourth of July fireworks. Watching him say goodbye to his older siblings was touching. For Jennifer and myself, our sadness of not being able to visit personally with our son for two years was more than offset by our joy at knowing that his serving a mission was one of the best things he could do: by selflessly serving others, he would be serving God, and would experience amazing growth.
On Tuesday, July 5, Garrett and I flew to Utah. We went straight to Mr. Mac, a store that specializes in outfitting missionaries, and got two suits, five pairs of pants, and a sturdy top coat. They tailored everything overnight while we stayed at Slade's. Garrett was able to see and say goodbye to his sister, brother-in-law, and two little nieces. The next morning, we picked up his suits and I drove him to the Missionary Training Center in Provo. There's little time to say goodbye there: missionaries open the car doors, greet the incoming missionary, grab his bags, and usher him inside. A quick hug, and he was off.
Before he entered the MTC, we discussed how there was a chance that I might not be alive when he got home. Garrett understood: he's been living with the uncertainty of his father having metastatic cancer for more than four years. By this point, he'd accepted the fact that I could die at any time. He'd factored that risk into his decision to serve a mission. And I'd much rather have him getting on with his life rather than being like Prince Charles, twiddling his thumbs and waiting for his parent to die. Frankly, Garrett was more broken up by the likelihood that our dog, Nephi, might die while Garrett was on his mission. It was a good reminder to me of where I am in the family pecking order. :)
In any event, once Garrett was launched, I could relax and spend some time with my grandchildren. Rose is nearly 3 years old, and Lily is 14 months. Although I last saw them only a few months ago, it's amazing how fast they change. But when I returned to their house, they both brought me a book and crawled into my lap, one grandchild on each side. I breathed a deep sigh of contentment, knowing that for now, all was well in my world. There are fewer joys greater than having two young grandchildren on your lap, reading books.
While out West, I spent some time looking at land in northern Utah. Jennifer and I have been exploring the idea of building a retirement home where we could age in place. I'm getting more comfortable with the idea of longer-term planning. (By that I mean a year or two in the future.) I'm guardedly hopeful that my current remission might have some durability, but am not so arrogant as to assume that I'll live for decades more. Having that limited horizon currently counsels against my getting into any new business ventures or making speculative long-term investments. But I also realize that Jennifer will need a place to live after I succumb to cancer, and that our current house is too large for her to manage. So we're talking about downsizing. I doubt if we'll be doing anything soon, but I'm beginning to consider our options. We like the idea of building, especially since it's hard to find something that we want: a one-level, barrier-free floor plan for us; a large lower level for family visits or that we could rent out if we wanted; and a studio with a separate entry in case Jennifer wants to have a place for her social work and therapeutic art and drumming. And it has to have a beautiful view of the mountains, and preferably have a southwestern exposure. I found a few lots that are potential candidates. Jennifer will check them out when she goes to Utah at the end of the month to help with our soon to come third grandchild.
So last night I flew back from Utah. My flight was delayed for several hours - something about an engine falling off :) - and I landed at BWI close to midnight. I knew that I had to be at Hopkins at 9 am for my lab work, appointment with Dr. Hahn, and infusion, so I decided to use some SPG points stay at the Aloft hotel near BWI. I had left the car there when Garrett and I flew to Utah, so everything worked well, except for the fact that the hotel shuttle bus driver decided to go home instead of picking me up. In the big picture, it's a small thing.
My labs all looked fine. Dr. Hahn continued to be pleased with my progress. I had read that a side effect from immunotherapy was fatigue, and wondered if I was just getting increasingly lazy, or if I had a medical justification for my lethargy. Something to add to the very short list of benefits of therapy for metastatic cancer: "I'm sorry honey, I can't do [fill in the blank] because I have cancer."
The Hopkins pharmacy reverted to form and took several extra hours to make and deliver my nivolumab to the infusion lab. I worked on this blog and eventually made my way into the infusion area, where I discussed with the nurses how the pharmacy was hours late once again. They replied that they had just been talking about me and how my dose seemed to always be late. I noted how that, last time, it was actually early. Why, one nurse asked. I replied that it was obviously a mistake, and they all broke out in laughter. Of course, having the pharmacy deliver a mistaken compound is one of the greatest fears of a nurse. It's good that we can laugh about it.
Once my nivolumab arrived, it was shoved into my body in record time and I was on my way home at the leading edge of rush hour. I got home just in time to join Jennifer for dinner with the missionaries from our congregation. So my week of travels started and ended with a missionary theme.
On Tuesday, July 5, Garrett and I flew to Utah. We went straight to Mr. Mac, a store that specializes in outfitting missionaries, and got two suits, five pairs of pants, and a sturdy top coat. They tailored everything overnight while we stayed at Slade's. Garrett was able to see and say goodbye to his sister, brother-in-law, and two little nieces. The next morning, we picked up his suits and I drove him to the Missionary Training Center in Provo. There's little time to say goodbye there: missionaries open the car doors, greet the incoming missionary, grab his bags, and usher him inside. A quick hug, and he was off.
Before he entered the MTC, we discussed how there was a chance that I might not be alive when he got home. Garrett understood: he's been living with the uncertainty of his father having metastatic cancer for more than four years. By this point, he'd accepted the fact that I could die at any time. He'd factored that risk into his decision to serve a mission. And I'd much rather have him getting on with his life rather than being like Prince Charles, twiddling his thumbs and waiting for his parent to die. Frankly, Garrett was more broken up by the likelihood that our dog, Nephi, might die while Garrett was on his mission. It was a good reminder to me of where I am in the family pecking order. :)
In any event, once Garrett was launched, I could relax and spend some time with my grandchildren. Rose is nearly 3 years old, and Lily is 14 months. Although I last saw them only a few months ago, it's amazing how fast they change. But when I returned to their house, they both brought me a book and crawled into my lap, one grandchild on each side. I breathed a deep sigh of contentment, knowing that for now, all was well in my world. There are fewer joys greater than having two young grandchildren on your lap, reading books.
While out West, I spent some time looking at land in northern Utah. Jennifer and I have been exploring the idea of building a retirement home where we could age in place. I'm getting more comfortable with the idea of longer-term planning. (By that I mean a year or two in the future.) I'm guardedly hopeful that my current remission might have some durability, but am not so arrogant as to assume that I'll live for decades more. Having that limited horizon currently counsels against my getting into any new business ventures or making speculative long-term investments. But I also realize that Jennifer will need a place to live after I succumb to cancer, and that our current house is too large for her to manage. So we're talking about downsizing. I doubt if we'll be doing anything soon, but I'm beginning to consider our options. We like the idea of building, especially since it's hard to find something that we want: a one-level, barrier-free floor plan for us; a large lower level for family visits or that we could rent out if we wanted; and a studio with a separate entry in case Jennifer wants to have a place for her social work and therapeutic art and drumming. And it has to have a beautiful view of the mountains, and preferably have a southwestern exposure. I found a few lots that are potential candidates. Jennifer will check them out when she goes to Utah at the end of the month to help with our soon to come third grandchild.
So last night I flew back from Utah. My flight was delayed for several hours - something about an engine falling off :) - and I landed at BWI close to midnight. I knew that I had to be at Hopkins at 9 am for my lab work, appointment with Dr. Hahn, and infusion, so I decided to use some SPG points stay at the Aloft hotel near BWI. I had left the car there when Garrett and I flew to Utah, so everything worked well, except for the fact that the hotel shuttle bus driver decided to go home instead of picking me up. In the big picture, it's a small thing.
My labs all looked fine. Dr. Hahn continued to be pleased with my progress. I had read that a side effect from immunotherapy was fatigue, and wondered if I was just getting increasingly lazy, or if I had a medical justification for my lethargy. Something to add to the very short list of benefits of therapy for metastatic cancer: "I'm sorry honey, I can't do [fill in the blank] because I have cancer."
The Hopkins pharmacy reverted to form and took several extra hours to make and deliver my nivolumab to the infusion lab. I worked on this blog and eventually made my way into the infusion area, where I discussed with the nurses how the pharmacy was hours late once again. They replied that they had just been talking about me and how my dose seemed to always be late. I noted how that, last time, it was actually early. Why, one nurse asked. I replied that it was obviously a mistake, and they all broke out in laughter. Of course, having the pharmacy deliver a mistaken compound is one of the greatest fears of a nurse. It's good that we can laugh about it.
Once my nivolumab arrived, it was shoved into my body in record time and I was on my way home at the leading edge of rush hour. I got home just in time to join Jennifer for dinner with the missionaries from our congregation. So my week of travels started and ended with a missionary theme.
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