35. The Numbers are in for Protocol #2
I won't make you read the whole post to get to the punchline... The last PSA reading before starting on the new protocol was 2.3, a drop from a high of 2.5. That alone was good news since it had been on a steady rise up to that point. After 30 days on the new drug protocol, my PSA dropped to 0.2, just a tick off the low of 0.1 which was measured at the end of chemo treatments in 2018. Good news.
We are breathing a cautious sigh of relief as we were not positive it would work at all. We plan to continue on the drug until it no longer works, and as mentioned in the previous post, that could be from 4 to 8 months, possibly longer.
After taking the drug for 30 days, I had to go in for an all day blood testing session in the adult chemo infusion department at UC Davis. Juli and I blasted down there for a 7AM arrival at the lab for a baseline blood draw, then drove over to and checked in at the infusion center. Since I am on a drug trial, they have very specific requirements and procedures. I had been fasting since the night before, and because they wanted to examine how my organs reacted to the drugs, I would not be allowed to eat anything until after the 2nd (or 3rd) draw. It's one thing to be hungry, but another to feel sick as one of the drugs needed to be taken with food to avoid stomach upset.
I got so lucky. I had the funniest and most enjoyable nurse I have yet had. She took Juli and I back to a chemo chair and got me all set up for a long day. While the actual drugs had been shipped and signed for the previous day, they were not able to actually find them, and the section of the pharmacy where they should be was locked and unmanned. They trusted that the situation would be resolved in time and began to prepare by adding some extra plumbing to my wrist where they could drain blood periodically without having to stick me again and again.
They also needed to wait for the baseline results from the 7AM blood draw at the other lab, so they kept checking with couriers and making phone calls while I just relaxed and hoped Juli was comfortable enough sitting in a regular chair.
As part of the identification process, they always ask your name and birthdate, and as it turned out, my nurse, whose name was also Dannie, had a birthdate 2 days off of mine. I ridiculously suggested we were twins and the banter went that way all day until we left at 5:30PM. I realize this was a "you had to be there situation" but truly, we laughed all day long. It took me a day to figure out why I liked her so much but when I finally did I realized that she was just like my daughter Ashlee, complete with the ability to trash-talk with a smile. Ashlee is a Doctor of Physical Therapy, and I decided to share this observation about Dannie with her because I have watched Ashlee make patients in her practice laugh, setting them at ease, and I have been the lucky Dad who thoroughly enjoys all my kids with their widely varied personalities and skills.
Dannie made the day truly memorable as a fun day, not a day of suffering. At the end of the day, the boss of the department came back to Juli and I to apologize for the snafus of the morning, not getting the drugs on time and the delay in lab results. But Dannie was removing the plumbing from my arm and I was laughing about something she'd said. The "boss" said "At least you're smiling!" I responded, well that's because Dannie is so amazing! He looked pleased and walked away, and I immediately turned to Dannie and said "I didn't mean that, I was just trying to make you look good, to which she replied "I know that, but thanks."
It was like playing HORSE with Ashlee in the cul de sac and losing, suggesting we extend the game to HORSIES to give me a chance to win, still losing, and hearing her say. "What next Dad? HORSIESES?"
Trash-talk in some settings can be a love language.
Near the end of the day my coordinator came in to take care of paperwork and chat. Juli and I had gotten to know the couple in the next chemo station over since they were also there all day and it wasn't long before we were all laughing about Star Wars and my coordinator's hilariously extensive knowledge of all things Star Wars. Even to the point of mimicking some of the worst acting in the series. We were all laughing and feeding off each other. At one point I made an offhand comment about my coordinator not fully understanding cancer patients since he doesn't have cancer. But then he shocked me with a description of his ongoing battle with cancer that includes significant and life threatening surgeries. He mesmerized Juli and I, and the lady next to us with his narrative, and we all felt truly encouraged.
There was a special camaraderie experienced in that hour and I was reminded again how true it is that we all have battles to fight, and many people have it far worse than I do.
Since beginning this protocol, my fatigue level continue to rise, I've had nausea almost every day, a headache that is always just below the surface, and I am getting physically weaker and fatter. But the cause of these symptoms is also beating back the cancer and extending my life. And life is good. Very good.
We are breathing a cautious sigh of relief as we were not positive it would work at all. We plan to continue on the drug until it no longer works, and as mentioned in the previous post, that could be from 4 to 8 months, possibly longer.
After taking the drug for 30 days, I had to go in for an all day blood testing session in the adult chemo infusion department at UC Davis. Juli and I blasted down there for a 7AM arrival at the lab for a baseline blood draw, then drove over to and checked in at the infusion center. Since I am on a drug trial, they have very specific requirements and procedures. I had been fasting since the night before, and because they wanted to examine how my organs reacted to the drugs, I would not be allowed to eat anything until after the 2nd (or 3rd) draw. It's one thing to be hungry, but another to feel sick as one of the drugs needed to be taken with food to avoid stomach upset.
I got so lucky. I had the funniest and most enjoyable nurse I have yet had. She took Juli and I back to a chemo chair and got me all set up for a long day. While the actual drugs had been shipped and signed for the previous day, they were not able to actually find them, and the section of the pharmacy where they should be was locked and unmanned. They trusted that the situation would be resolved in time and began to prepare by adding some extra plumbing to my wrist where they could drain blood periodically without having to stick me again and again.
They also needed to wait for the baseline results from the 7AM blood draw at the other lab, so they kept checking with couriers and making phone calls while I just relaxed and hoped Juli was comfortable enough sitting in a regular chair.
 |
| Handy wrist plumbing |
As part of the identification process, they always ask your name and birthdate, and as it turned out, my nurse, whose name was also Dannie, had a birthdate 2 days off of mine. I ridiculously suggested we were twins and the banter went that way all day until we left at 5:30PM. I realize this was a "you had to be there situation" but truly, we laughed all day long. It took me a day to figure out why I liked her so much but when I finally did I realized that she was just like my daughter Ashlee, complete with the ability to trash-talk with a smile. Ashlee is a Doctor of Physical Therapy, and I decided to share this observation about Dannie with her because I have watched Ashlee make patients in her practice laugh, setting them at ease, and I have been the lucky Dad who thoroughly enjoys all my kids with their widely varied personalities and skills.
Dannie made the day truly memorable as a fun day, not a day of suffering. At the end of the day, the boss of the department came back to Juli and I to apologize for the snafus of the morning, not getting the drugs on time and the delay in lab results. But Dannie was removing the plumbing from my arm and I was laughing about something she'd said. The "boss" said "At least you're smiling!" I responded, well that's because Dannie is so amazing! He looked pleased and walked away, and I immediately turned to Dannie and said "I didn't mean that, I was just trying to make you look good, to which she replied "I know that, but thanks."
It was like playing HORSE with Ashlee in the cul de sac and losing, suggesting we extend the game to HORSIES to give me a chance to win, still losing, and hearing her say. "What next Dad? HORSIESES?"
Trash-talk in some settings can be a love language.
Near the end of the day my coordinator came in to take care of paperwork and chat. Juli and I had gotten to know the couple in the next chemo station over since they were also there all day and it wasn't long before we were all laughing about Star Wars and my coordinator's hilariously extensive knowledge of all things Star Wars. Even to the point of mimicking some of the worst acting in the series. We were all laughing and feeding off each other. At one point I made an offhand comment about my coordinator not fully understanding cancer patients since he doesn't have cancer. But then he shocked me with a description of his ongoing battle with cancer that includes significant and life threatening surgeries. He mesmerized Juli and I, and the lady next to us with his narrative, and we all felt truly encouraged.
There was a special camaraderie experienced in that hour and I was reminded again how true it is that we all have battles to fight, and many people have it far worse than I do.
Since beginning this protocol, my fatigue level continue to rise, I've had nausea almost every day, a headache that is always just below the surface, and I am getting physically weaker and fatter. But the cause of these symptoms is also beating back the cancer and extending my life. And life is good. Very good.
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