Sailing Through the Doldrums
It is much easier to write to my blog when things are going well. I have not written lately because the last few months have seen some setbacks, though not all is bad. Since the surgery on August 2nd, I have had only two rounds of chemotherapy. I should have been getting it every two weeks since the 1st of September. On many, many days, I have shown up at the chemo center only to be sent home. I felt like a misbehaving boy sent home from school.
I have been deemed unfit for chemo for a variety of reasons. At times my blood cell counts have been too low. Sometimes it’s the red cells (which we need for energy), sometimes it’s the white cells (which help prevent and fight disease) and sometimes it’s the platelets (needed for healing). When the red or white cells are low, I am considered too weak. When the platelets are low, it is considered too dangerous to use Avastin, a key component of my new cocktail. Avastin can exacerbate the healing difficulty. When any of the cell counts are low, I usually get injections to boost them up, instead of chemo.
Another reason for getting “sent home from school” is that I have a minor residual effect from the surgery that has not cleared up. I will spare you the details, but suffice it to say that the best name I’ve come up with for this problem is “pain-in-the-butt-itis.” The docs would really like to see this thing healed before introducing Avastin.
A new complication emerged this week to add to the reasons why I am not getting chemo. A CT scan revealed that my spleen is enlarged. This one came out of the blue. Go figure. Roger, my oncologist, was a bit surprised by this one and should have a plan for what to do about it next week.
Overall, it has been depressing to be unable to take the healing juices that have done such a good job so far in reducing my cancer. It turns out the news is not all bad, though. The CT scan also showed that the liver tumors have shrunk significantly since the last CT scan, in spite of the fact that I’ve had so little chemo! Like I said, go figure. There is a lot of mystery and empiricism in this game. It must have been that the residual of old chemo treatments was still at work. Or maybe it’s the wonderful healing thoughts and prayers from all my family and friends. I am very fortunate.
No More Erbitux “Sunburn”
I am now officially off Erbitux, the monoclonal antibody that caused my face and the inside of my mouth to burn. At the worst times, people would gawk at my bright red, blistered and crusted face. The surprise side-effect of enduring all that nuisance is that now my skin is healthier than ever. Months of Erbitux sunburns resulted in layers of skin shedding, leaving my face smoother and easy to shave. I think this might be equivalent to the expensive cosmetic surgery known as dermal abrasion.
Another surprise side effect is that my hair is still on my head but it has lost its curls. Pascale bought me a comb. She had to show me how to use it, because I have never been able to pass one through my hair before.
CEA Update
My CEA has come all the way down to the thirties. That is great progress, but I also learned something disappointing. Bringing the CEA down even to zero doesn't necessarily mean you have beaten cancer. I met a fellow colon cancer patient whose CEA is down to 2.0, yet he remains very sick. Hearing this patient's story was quite a shock, because we were under the illusion that my CEA score told the whole story and it showed that we were winning. Having our illusions of progress shattered in this way took us for a loop.
San Francisco
In mid-November, Pascale and I went up to the city for a few days. We attended the San Francisco Opera production of Verde’s “The Force of Destiny.” We loved all four hours of it. The next three days, I attended the national meeting of the Institute for Operations Research and Management Science (INFORMS). It was supposed to be held in New Orleans, according to plans made four years ago, and had to be relocated in a hurry. It was amazing to see a meeting attended by 3500 people go so well when the venue was changed at the last moment. Kudos to Terry Cryan, the genius meetings planner of INFORMS.
I have been attending the INFORMS meetings for thirty years. It is a professional society with over 11,000 members, and now I am one of the dozen or so elected leaders. Since getting sick, several friends have been very generous in helping me get my job done. I was active the first two days of the conference and slept for most of the third. I saw friends from all over the world and got a huge lift from their friendship and support. Life is good.
This is Abigail, the oldest of my three daughters. I am very proud of the double life Abby leads. She's a dedicated bilingual social worker by day, and a talented actor, dancer and model by night.
Skylar administers kiss therapy to a grateful Grandpa. Click on her for a close-up view.
I have been deemed unfit for chemo for a variety of reasons. At times my blood cell counts have been too low. Sometimes it’s the red cells (which we need for energy), sometimes it’s the white cells (which help prevent and fight disease) and sometimes it’s the platelets (needed for healing). When the red or white cells are low, I am considered too weak. When the platelets are low, it is considered too dangerous to use Avastin, a key component of my new cocktail. Avastin can exacerbate the healing difficulty. When any of the cell counts are low, I usually get injections to boost them up, instead of chemo.
Another reason for getting “sent home from school” is that I have a minor residual effect from the surgery that has not cleared up. I will spare you the details, but suffice it to say that the best name I’ve come up with for this problem is “pain-in-the-butt-itis.” The docs would really like to see this thing healed before introducing Avastin.
A new complication emerged this week to add to the reasons why I am not getting chemo. A CT scan revealed that my spleen is enlarged. This one came out of the blue. Go figure. Roger, my oncologist, was a bit surprised by this one and should have a plan for what to do about it next week.
Overall, it has been depressing to be unable to take the healing juices that have done such a good job so far in reducing my cancer. It turns out the news is not all bad, though. The CT scan also showed that the liver tumors have shrunk significantly since the last CT scan, in spite of the fact that I’ve had so little chemo! Like I said, go figure. There is a lot of mystery and empiricism in this game. It must have been that the residual of old chemo treatments was still at work. Or maybe it’s the wonderful healing thoughts and prayers from all my family and friends. I am very fortunate.
No More Erbitux “Sunburn”
I am now officially off Erbitux, the monoclonal antibody that caused my face and the inside of my mouth to burn. At the worst times, people would gawk at my bright red, blistered and crusted face. The surprise side-effect of enduring all that nuisance is that now my skin is healthier than ever. Months of Erbitux sunburns resulted in layers of skin shedding, leaving my face smoother and easy to shave. I think this might be equivalent to the expensive cosmetic surgery known as dermal abrasion.
Another surprise side effect is that my hair is still on my head but it has lost its curls. Pascale bought me a comb. She had to show me how to use it, because I have never been able to pass one through my hair before.
CEA Update
My CEA has come all the way down to the thirties. That is great progress, but I also learned something disappointing. Bringing the CEA down even to zero doesn't necessarily mean you have beaten cancer. I met a fellow colon cancer patient whose CEA is down to 2.0, yet he remains very sick. Hearing this patient's story was quite a shock, because we were under the illusion that my CEA score told the whole story and it showed that we were winning. Having our illusions of progress shattered in this way took us for a loop.
San Francisco
In mid-November, Pascale and I went up to the city for a few days. We attended the San Francisco Opera production of Verde’s “The Force of Destiny.” We loved all four hours of it. The next three days, I attended the national meeting of the Institute for Operations Research and Management Science (INFORMS). It was supposed to be held in New Orleans, according to plans made four years ago, and had to be relocated in a hurry. It was amazing to see a meeting attended by 3500 people go so well when the venue was changed at the last moment. Kudos to Terry Cryan, the genius meetings planner of INFORMS.
I have been attending the INFORMS meetings for thirty years. It is a professional society with over 11,000 members, and now I am one of the dozen or so elected leaders. Since getting sick, several friends have been very generous in helping me get my job done. I was active the first two days of the conference and slept for most of the third. I saw friends from all over the world and got a huge lift from their friendship and support. Life is good.
This is Abigail, the oldest of my three daughters. I am very proud of the double life Abby leads. She's a dedicated bilingual social worker by day, and a talented actor, dancer and model by night.
Skylar administers kiss therapy to a grateful Grandpa. Click on her for a close-up view.
posted by Rick Rosenthal | 8:58 PM
2 Comments:
We continue to pray for you in Southern California and can understand the bittersweet nature of the news on the "Let's fight this thing!" front. Just remember to enjoy all the time that G-d grants you on this side, and remember to say the important things too! Indeed, because of your medical situation, you are probably already saying those things.
Happy Thanksgiving--as your photos show, there's a lot to be thankful for--and early secular Shanah Tovah, H
Good update Dad,
I laughed at the idea of your dermalabrasion facial!
Well, I filmed a Spanish tv show yesterday, it will air in Southern California next week.
Me and Marjorie are arriving this evening!
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