The rest of the week...
Wednesday and Thursday it's radiation at 3:30.
Wednesday I drive Todd and wait for him. He comes out looking the same - not sure what I am expecting. Thursday he drives himself after going to work in the morning. We have a colleague of his over for dinner, a plan we made 2 weeks earlier. It is a good diversion and Todd eats a healthy amount.
Friday is double -dose day. I drop Todd off at UCSF at 7:30 and head to work. His 2nd radiation appointment isn't until 3:30, but after lunch they move it up a little. I leave work at 2:45 to pick him up. Back in WC we stop at Kaiser for more drugs, then Longs, then we are finally home at 5:15. Todd lies on the bed, exhausted. Joyce and Glen come over at 6:30 with a casserole and salad for dinner! I know I can make food, but it is so nice to have it there and not have to think about it. It gives me more time to take care of Todd. We sit and chat, and just as they are about to leave, Todd comes out. Glenn has been such a bright spot for Todd, as Todd is using the same doctors and almost the same treatment. Personally, I keep thinking, "Glen and Joyce did it, we can do it, yes!"
Saturday, Feb 28
Todd is pretty exhausted. The antiemetics keep the nausea at bay, but make him feel strange. He's taking Peptin for heartburn as well. Diane said the nausea could last 6-7 days, so you don't really want to stop the drugs, but as he says, "I don't feel like myself except for a very short period." Carolyn and I reverse the sofa and love seat in the family room so he can lie on the sofa and watch her play Mario. We walk around the block. It is a surprisingly mild day, and so light at 5:30. If he is so lethargic after just 4 days of treatment (admittedly, one was the big chemo day), I wonder how he will be in another week or two. I wish I could infuse him with energy. He has so little.
Saturday, February 28, 2009
Tuesday, February 24 --Treatment finally begins
Todd and I get up at 5:30 am so we can drive to UCSF for his appointment at the Infusion Clinic. The kids are still asleep; I leave their lunches on the counter, feed the dog and we are off. We call them when we hit the Bay Bridge to make sure they are all up and getting ready for school. When we arrive at the 5th floor of the Cancer Center, they have no paperwork! Luckily, Todd has the clinical trial coordinator's cell number and they get to work on locating the paperwork. Without it, we can't start.
We hang out in the waiting nook, where I find a basket of cards made by 5th graders. The little sign on the basket reads "Take what you need." Each card has a sweet message, like "Keep strong. You can do this! Get Well! Love, Josh (age 11). On the bulletin board are 2 envelopes. One is full of blank strips of paper. The other has "What we wish people would say and what we wish people WOULDN'T say" written on it. I read the strips of paper in that one. Most of them are notes of thanks to the nurses and staff, but one digs right into my gut. It reads, "Don't say And what did YOU do to deserve this?" Amen to that.
Todd's paperwork has arrived and we meet the infusion nurse, Diane Craig, the same person who treated Glen! We are in a sunny room with 6 gray recliners, with a few extra chairs for visitors. There are 3 other rooms just like this and all are empty at this early hour. The chemo will take about 6 hours. First a big bag of saline, then a bag of steroid anti-nausea drugs, then the cisplatin, which turns out to be a small bag of pale yellow liquid, then another big bag of saline. I spend the time reading and unplugging Todd's IV, as he needs to go to the bathroom about every 15-20 minutes. By 11:00 a.m. every one of the 24 recliners or beds is full. Lots of women with breast cancer, men with who-knows-what. So many people with cancer.
At 1:45 we are done with the chemo so we head out for lunch. Nearby is a Philly Cheesesteak. So surreal sitting in there after the hospital. We walk back in the bright sunshine. It is a beautiful day, except for the cancer. We go down to the basement to the Radiation Department. I wait while Todd goes in, after a bit they call me to come in and take a look. He is on the radiation table with a red foam cushion under his knees and a white plastic mesh mask over his head and neck. I take 2 photos, avoiding the remote dangling from the ceiling. The tech and I go in the next room and he starts the radiation. I see Todd on the monitor and the tech explains that he can hear Todd as well, so if he needs anything, the machine can be stopped. I go back to the waiting room and after about 20 minutes Todd comes out, his cheeks indented with a faint waffle pattern from the mask.
That night he is surprised by the nausea and headache -- just intermittant enough to make sleep difficult. He also feels wired from the steroids, so it is a restless night.
Todd and I get up at 5:30 am so we can drive to UCSF for his appointment at the Infusion Clinic. The kids are still asleep; I leave their lunches on the counter, feed the dog and we are off. We call them when we hit the Bay Bridge to make sure they are all up and getting ready for school. When we arrive at the 5th floor of the Cancer Center, they have no paperwork! Luckily, Todd has the clinical trial coordinator's cell number and they get to work on locating the paperwork. Without it, we can't start.
We hang out in the waiting nook, where I find a basket of cards made by 5th graders. The little sign on the basket reads "Take what you need." Each card has a sweet message, like "Keep strong. You can do this! Get Well! Love, Josh (age 11). On the bulletin board are 2 envelopes. One is full of blank strips of paper. The other has "What we wish people would say and what we wish people WOULDN'T say" written on it. I read the strips of paper in that one. Most of them are notes of thanks to the nurses and staff, but one digs right into my gut. It reads, "Don't say And what did YOU do to deserve this?" Amen to that.
Todd's paperwork has arrived and we meet the infusion nurse, Diane Craig, the same person who treated Glen! We are in a sunny room with 6 gray recliners, with a few extra chairs for visitors. There are 3 other rooms just like this and all are empty at this early hour. The chemo will take about 6 hours. First a big bag of saline, then a bag of steroid anti-nausea drugs, then the cisplatin, which turns out to be a small bag of pale yellow liquid, then another big bag of saline. I spend the time reading and unplugging Todd's IV, as he needs to go to the bathroom about every 15-20 minutes. By 11:00 a.m. every one of the 24 recliners or beds is full. Lots of women with breast cancer, men with who-knows-what. So many people with cancer.
At 1:45 we are done with the chemo so we head out for lunch. Nearby is a Philly Cheesesteak. So surreal sitting in there after the hospital. We walk back in the bright sunshine. It is a beautiful day, except for the cancer. We go down to the basement to the Radiation Department. I wait while Todd goes in, after a bit they call me to come in and take a look. He is on the radiation table with a red foam cushion under his knees and a white plastic mesh mask over his head and neck. I take 2 photos, avoiding the remote dangling from the ceiling. The tech and I go in the next room and he starts the radiation. I see Todd on the monitor and the tech explains that he can hear Todd as well, so if he needs anything, the machine can be stopped. I go back to the waiting room and after about 20 minutes Todd comes out, his cheeks indented with a faint waffle pattern from the mask.
That night he is surprised by the nausea and headache -- just intermittant enough to make sleep difficult. He also feels wired from the steroids, so it is a restless night.
Saturday, February 21, 2009
Thursday Feb 19, 2009 -- I call Kaiser to try to get my echocardiogram appt moved up. After I explain my predicament, a very nice young woman finds me one on Friday at 9:30 in Antioch. Fifteen minutes later she calls me back to tell me that I could come into Walnut Creek at 7:30am instead if I prefer. How nice! I figured we were done but she kept looking for an even better appointment for me.
Wednesday Feb 18, 2009 -- It’s Radiation Dress Rehearsal Day and Trial Randomization Day. Today I find out if I am in the control group "arm" or the experimental "arm" (also called the Martha Stewart arm – it is the drug that had problems in an earlier trial and Martha got a phone call to sell her ImClone stock before the news was released to the public).
But before all that starts, I’m in the waiting room writing down questions for Dr. Yom if we get a chance to talk. They are running half an hour late so I start reading over the trial document to see if it sparks any additional questions. I finish that and they still haven’t called me so I read over the list of tests that are required to be run before I start treatment: MRI – check, chest x-ray – check, blood work – check, echocardiogram – OOPS! I haven’t had an echocardiogram yet.
Kevin, my trial coordinator, arrives with a pre-treatment quality of life survey for me to fill out. I tell him I’ll work on it but did he know I haven’t had an echocardiogram yet and I think it’s required before I get randomized. I show him the list. He leaves to talk this over with Dr. Yom. I get called and escorted to my radiation machine. Dr. Yom is there and she isn’t happy. She confirms that the randomization won’t be done today and the start date of Feb. 24 is in jeopardy. That is really discouraging. She says she will call my Kaiser doctor, Dr. Liu, to request an emergency echocardiogram.
I get to meet my radiation crew and my x-ray machine. We do the mask bolt down thing and they run a few x-ray scans to make sure everything is lined up. Dr. Yom says everything looks great. I go upstairs to meet with my medical oncologist, Dr. Dubey. I get a brief exam which should be the last required step before randomization except for the missing echocardiogram. I leave and pick up a phone msg from Dr. Liu telling me that I have an echocardiogram appointment Monday morning at 8:30 in Walnut Creek. This might just be soon enough to keep my Tuesday start if I can get the results faxed or called into UCSF right after the test. Dr. Liu suggests in her msg that I try to move to an earlier time Thursday or Friday if someone cancels.
But before all that starts, I’m in the waiting room writing down questions for Dr. Yom if we get a chance to talk. They are running half an hour late so I start reading over the trial document to see if it sparks any additional questions. I finish that and they still haven’t called me so I read over the list of tests that are required to be run before I start treatment: MRI – check, chest x-ray – check, blood work – check, echocardiogram – OOPS! I haven’t had an echocardiogram yet.
Kevin, my trial coordinator, arrives with a pre-treatment quality of life survey for me to fill out. I tell him I’ll work on it but did he know I haven’t had an echocardiogram yet and I think it’s required before I get randomized. I show him the list. He leaves to talk this over with Dr. Yom. I get called and escorted to my radiation machine. Dr. Yom is there and she isn’t happy. She confirms that the randomization won’t be done today and the start date of Feb. 24 is in jeopardy. That is really discouraging. She says she will call my Kaiser doctor, Dr. Liu, to request an emergency echocardiogram.
I get to meet my radiation crew and my x-ray machine. We do the mask bolt down thing and they run a few x-ray scans to make sure everything is lined up. Dr. Yom says everything looks great. I go upstairs to meet with my medical oncologist, Dr. Dubey. I get a brief exam which should be the last required step before randomization except for the missing echocardiogram. I leave and pick up a phone msg from Dr. Liu telling me that I have an echocardiogram appointment Monday morning at 8:30 in Walnut Creek. This might just be soon enough to keep my Tuesday start if I can get the results faxed or called into UCSF right after the test. Dr. Liu suggests in her msg that I try to move to an earlier time Thursday or Friday if someone cancels.
Friday Feb. 13, 2009 -- I go to Kaiser over lunch to get my blood drawn and my chest x-ray taken. I tell the check-in tech why I’m there and how I need the results back to UCSF in a couple days. He says the submitted request is for normal workup timing and that would never meet the timing I need. He changes the timing request to ‘stat’ and offers to do the blood draw himself right then. Thank you.
Thursday Feb 12, 2009 -- I’m at UCSF for ‘simulation’. Translation – I get a thermoplastic mesh mask molded very tightly to my head, neck and shoulders while it is bolted to the treatment table and my wrists are tied and pulled down with cloth belts at my sides. I must not have a trace of claustrophobia since it doesn’t bother me at all. I can imagine some folks going crazy, though.
Before the mask material cools and sets up they tell me to swallow repeatedly so my Adam’s apple generates the space needed to move when I swallow during my treatments. I also get a CT scan while bolted down in my new mask. I still need a chest x-ray and some specific blood work done before I can be admitted to the trial. They want it all done and reported back to UCSF by Feb. 18, the day they will randomize me to see which part of the trial I am in so my treatment plan can finally be determined.
Before the mask material cools and sets up they tell me to swallow repeatedly so my Adam’s apple generates the space needed to move when I swallow during my treatments. I also get a CT scan while bolted down in my new mask. I still need a chest x-ray and some specific blood work done before I can be admitted to the trial. They want it all done and reported back to UCSF by Feb. 18, the day they will randomize me to see which part of the trial I am in so my treatment plan can finally be determined.
Wednesday Feb 11, 2009 -- The doctor and dentist appointments become somewhat of a constant blur. Today I get an MRI done at Kaiser in Antioch. The MRI tech is a cancer survivor and I explain the basics of MRI physics to her and afterwards she lets me see the scans. It’s amazing what they can see with this technology.
Then it’s back to Dr. Patil and replacing my last four old amalgams. Now there is less metal in my mouth that would scatter the x-rays and increase the intensity where we don’t want it and decrease it where we do. These wouldn’t interfere nearly as much as my braces, but why take any unnecessary chances.
Then it’s back to Dr. Patil and replacing my last four old amalgams. Now there is less metal in my mouth that would scatter the x-rays and increase the intensity where we don’t want it and decrease it where we do. These wouldn’t interfere nearly as much as my braces, but why take any unnecessary chances.
Tuesday Feb 10, 2009 -- I get a baseline hearing test done. One of the common side effects from chemorad is some permanent hearing loss, so this way we will know how badly my hearing is being impacted by the treatment. We still need to set up a baseline swallowing measurement. Yup, that gets whacked too. Fun, fun.
Monday Feb 9, 2009 -- Dr. Pearson, my orthodontist, gives me my retainers – a clear thin plastic lower one for during the day and a massive silicone upper/lower (like a football mouth guard only bigger) for the night that will continue to move my teeth. The kids call me Mr. Fishlips when I wear the silicone retainer. Hopefully my teeth will get aligned correctly someday despite having the braces removed early. (Bonnie's note: They look great!)
Wednesday Feb 4, 2009 -- I go to UCSF for a simulated rad treatment and CT scan, but Dr. Yom decides these need to be delayed at least a week due to my recent dental work and probable temporary internal swelling.
After discussing the issues with her again I finally decide to ask Kaiser to refer me to the UCSF clinical trial. Late afternoon I return to Dr. Patil’s office to have my teeth cleaned. Everything is being done to decrease the probability of decay during my treatment since my salivary glands will get whacked and therefore the bacteria in my mouth will flourish.
After discussing the issues with her again I finally decide to ask Kaiser to refer me to the UCSF clinical trial. Late afternoon I return to Dr. Patil’s office to have my teeth cleaned. Everything is being done to decrease the probability of decay during my treatment since my salivary glands will get whacked and therefore the bacteria in my mouth will flourish.
Tuesday Feb 3, 2009 -- I get my braces off three months early due to the upcoming rad treatments. For the next 5 days I enjoy having a mouth with just teeth and tongue, then I get day and night retainers. Bah. Immediately after getting my braces removed, I drive to my dentist’s office and have an old crown removed and three fillings replaced. Are we having fun yet?
Bonnie's Post
One of the things we learned in discussions with Pat and Tom was that they both lost about 50 lbs during their cancer treatment. Yikes! My immediate goal: try to fatten Todd up from his svelt 182 lbs. before he starts his treatment. I started encouraging him to have dessert every night (something we rarely have): Marie Callendar's pies, ice cream, vanilla shakes from the SF Creamery, etc. He's also had several burritos from Casa. So far it has worked -- he has actually gained 10 lbs! His gp was originally concerned that his cholesterol had shot up until Todd mentioned that I was trying to fatten him up and so he had eaten cheesecake for dessert several nights before his blood test.
So far the kids are okay. Dad looks the same (okay, maybe a tiny bit fuller), acts the same, and is still doing just about all the "dad" things, including helping with homework and taking C out driving, so that helps the kids put the cancer out of their minds as much as possible. They do not like to talk about it. They are much more affectionate and often more thoughtful when it comes to their dad, which is nice.
My big concern is getting Todd through this. I think the most difficult part for me, and for the kids, will be seeing him during the worst weeks of treatment and immediately after, and not being able to do much to help him feel better. The good news is that all the doctors feel that "he should respond well to the treatment," and for those words I am so grateful.
This period of waiting before the treatment starts (due to the time it takes to see all the doctors, understand the options, get second opinions, make decisions, get all the tests and dental work done before treatment can start) seems to drag on and on. I just want him to get the treatment and get cured so we can get back to our "normal" life. That's not too much to ask, is it? Just a normal, boring life. No melodramatics required.
I am very hopeful this will all work, and it has been wonderful to hear from people who have been down this cancer road and have survived. And from those about where we are, near the long beginning of the journey. Just hearing their stories and advice and positive thoughts helps us believe that we can get through this, too. It has also been wonderful to reconnect with old friends we have not seen or heard from in a while due to the busyness of having 3 kids. Thank you all. You have made a difference already.
One of the things we learned in discussions with Pat and Tom was that they both lost about 50 lbs during their cancer treatment. Yikes! My immediate goal: try to fatten Todd up from his svelt 182 lbs. before he starts his treatment. I started encouraging him to have dessert every night (something we rarely have): Marie Callendar's pies, ice cream, vanilla shakes from the SF Creamery, etc. He's also had several burritos from Casa. So far it has worked -- he has actually gained 10 lbs! His gp was originally concerned that his cholesterol had shot up until Todd mentioned that I was trying to fatten him up and so he had eaten cheesecake for dessert several nights before his blood test.
So far the kids are okay. Dad looks the same (okay, maybe a tiny bit fuller), acts the same, and is still doing just about all the "dad" things, including helping with homework and taking C out driving, so that helps the kids put the cancer out of their minds as much as possible. They do not like to talk about it. They are much more affectionate and often more thoughtful when it comes to their dad, which is nice.
My big concern is getting Todd through this. I think the most difficult part for me, and for the kids, will be seeing him during the worst weeks of treatment and immediately after, and not being able to do much to help him feel better. The good news is that all the doctors feel that "he should respond well to the treatment," and for those words I am so grateful.
This period of waiting before the treatment starts (due to the time it takes to see all the doctors, understand the options, get second opinions, make decisions, get all the tests and dental work done before treatment can start) seems to drag on and on. I just want him to get the treatment and get cured so we can get back to our "normal" life. That's not too much to ask, is it? Just a normal, boring life. No melodramatics required.
I am very hopeful this will all work, and it has been wonderful to hear from people who have been down this cancer road and have survived. And from those about where we are, near the long beginning of the journey. Just hearing their stories and advice and positive thoughts helps us believe that we can get through this, too. It has also been wonderful to reconnect with old friends we have not seen or heard from in a while due to the busyness of having 3 kids. Thank you all. You have made a difference already.
Thursday Jan 29, 2009 -- After another long phone conversation with Dr. Fong, I finally decide to start with chemo/rad. I sleep better than I have in weeks, but wake up with another difficult decision to make – try to get referred by Kaiser to the trial at UCSF or not? Over the next 4 days I exchange emails with all of my doctors, repeatedly review the trial documents and read related journal articles on-line and try to decide what to do.
Tuesday Jan 27, 2009 -- This was to be my decision day. I had an 11:15 appointment with Dr. Fong, a 2:00 consultation appointment with Dr. Dubey, the UCSF medical oncologist, and a 3:30 appointment with Dr. Yom, Glen's UCSF radiation oncologist with the impressive bio.
Dr Fong reassured me that there was no noticeable change in either tumor and we talked about the pros and cons of starting with surgery or starting with chemorad.
Dr. Debuy recommended starting with chemorad and joining a clinical trial being run at UCSF (the same trial Glen was in).
Dr. Yom was as advertised; she came across as very competent, very informed on the latest results and their implications for my case. Bonnie and I were really impressed. Dr. Yom also recommended starting with chemorad and the clinical trial. We had a long list of questions and the conversation went on from there. We never felt rushed. In fact, we talked for over two hours. But I couldn’t make a decision.
Dr Fong reassured me that there was no noticeable change in either tumor and we talked about the pros and cons of starting with surgery or starting with chemorad.
Dr. Debuy recommended starting with chemorad and joining a clinical trial being run at UCSF (the same trial Glen was in).
Dr. Yom was as advertised; she came across as very competent, very informed on the latest results and their implications for my case. Bonnie and I were really impressed. Dr. Yom also recommended starting with chemorad and the clinical trial. We had a long list of questions and the conversation went on from there. We never felt rushed. In fact, we talked for over two hours. But I couldn’t make a decision.
Thursday Jan 22, 2009 -- I had been agonizing over whether to have surgery first and get as much of the cancer out NOW or follow the recommendation of the Tumor Board and UCSF and have chemoradiation first with surgery as a backup if the chemoradiation doesn’t clean out all of the cancer.
I had been scheduled for surgery on Jan 28 to remove the left tonsil and about 10 lymph nodes on the left side of my neck. I was reading research papers like crazy on the web, but none of them were helping me make the decision. I had three phone conversations with Dr. Eisele. For once, more data wasn’t helping! So I left a message for Dr. Fong and asked him to call me. That evening we agreed to turn back the Jan 28 operating room reservation. We discussed the pros and cons for a while. I was starting to worry that the cancer was rapidly advancing while I was dithering so Dr. Fong agreed to have a look at my tumors the following Tuesday.
Dental update… I visited my endodontist to check if the root canal done last May was looking OK. If it doesn’t look OK it may need to be extracted. Good news! The May 2008 root canal looks good. Bad News! The old root canal next to it is failing. When my immune system dips during the chemo/rad treatment that tooth will probably become severely infected. I probably have 4-6 more root canals. I ask him to x-ray the others. I worry that we may be looking at multiple root canal redos / extractions. Good news! The others look fine. I only need to have 1 root canal redone.
I had been scheduled for surgery on Jan 28 to remove the left tonsil and about 10 lymph nodes on the left side of my neck. I was reading research papers like crazy on the web, but none of them were helping me make the decision. I had three phone conversations with Dr. Eisele. For once, more data wasn’t helping! So I left a message for Dr. Fong and asked him to call me. That evening we agreed to turn back the Jan 28 operating room reservation. We discussed the pros and cons for a while. I was starting to worry that the cancer was rapidly advancing while I was dithering so Dr. Fong agreed to have a look at my tumors the following Tuesday.
Dental update… I visited my endodontist to check if the root canal done last May was looking OK. If it doesn’t look OK it may need to be extracted. Good news! The May 2008 root canal looks good. Bad News! The old root canal next to it is failing. When my immune system dips during the chemo/rad treatment that tooth will probably become severely infected. I probably have 4-6 more root canals. I ask him to x-ray the others. I worry that we may be looking at multiple root canal redos / extractions. Good news! The others look fine. I only need to have 1 root canal redone.
Monday Jan 19, 2009 -- Dentist appointment with my orthodontist, the first of 11 dentist appointments I will have over the next 24 days to prepare for my treatment. I will have braces adjusted, then removed, retainers made, root canal checked, root canal redone, teeth cleaned, crown replaced and 7 old amalgam fillings replaced.
It turns out that radiation treatment to the jaw can lead to a condition similar to gangrene of the jawbone if any extractions need to be done during or shortly after radiation treatment so I was very motivated to squeeze probably 5 years of dental work into 3.5 weeks.
It turns out that radiation treatment to the jaw can lead to a condition similar to gangrene of the jawbone if any extractions need to be done during or shortly after radiation treatment so I was very motivated to squeeze probably 5 years of dental work into 3.5 weeks.
Tuesday Jan 13, 2009 -- We met Dr. Eisele at UCSF. My first impressions: very competent and very busy. There were no wasted words. First he did a very thorough exam, then we discussed treatment options.
Until now I had been diagnosed T1 or T2, N1, M0. T is the tumor size, N is the number & location of lymph nodes and M is the degree of distant metathesis. Dr. Eisele thought I was T1 or T2, N2, M0. The recommended approach for N2 is different than N1 so the diagnosis mattered.
He asked if I wanted consultations with medical and radiation oncologists at UCSF. Hey, more data is a good thing, so I said yes even though I doubted Kaiser would pick up the tab for any of my outside consultations. He also offered to take my case to the UCSF Tumor Board. This offer sounded way cool since now I would have many eyes and brains at one of the leading cancer centers in the US looking at my case and advising me on the best treatment plan.
Until now I had been diagnosed T1 or T2, N1, M0. T is the tumor size, N is the number & location of lymph nodes and M is the degree of distant metathesis. Dr. Eisele thought I was T1 or T2, N2, M0. The recommended approach for N2 is different than N1 so the diagnosis mattered.
He asked if I wanted consultations with medical and radiation oncologists at UCSF. Hey, more data is a good thing, so I said yes even though I doubted Kaiser would pick up the tab for any of my outside consultations. He also offered to take my case to the UCSF Tumor Board. This offer sounded way cool since now I would have many eyes and brains at one of the leading cancer centers in the US looking at my case and advising me on the best treatment plan.
Monday Jan 12, 2009 -- We met the radiation treatment staff and my radiation oncologist. At this stage Dr. Fong was my reference point for my doctors; admittedly a challenging standard to reach. The meeting went well except for 2 things: listening skills and HPV-16. I had been spending most of my free time doing research on my cancer. There has been a mini-epidemic of throat cancers, especially tonsil cancers, in patients who didn’t have the classic high risk behaviors – heavy smoking or heavy drinking. It turns out that HPV-16, the same human papilloma virus that causes cancer of the cervix in women, causes tonsil and tongue cancers in some folks. While normally one wouldn’t wish they had an STD, in this case I was really hoping my cancer was caused by HPV-16 since the cure rates were significantly better for HPV-16 positive tumors than HPV-16 negative tumors.
I had requested that Kaiser run the HPV-16 test on one of my biopsy samples. I hadn’t yet heard the result but evidently it was on my updated chart. The doctor didn’t seem to be up to date on the importance of the HPV result or how to interpret the result. This wasn’t going to have any negative impact on my treatment but it wasn’t inspiring either.
I had requested that Kaiser run the HPV-16 test on one of my biopsy samples. I hadn’t yet heard the result but evidently it was on my updated chart. The doctor didn’t seem to be up to date on the importance of the HPV result or how to interpret the result. This wasn’t going to have any negative impact on my treatment but it wasn’t inspiring either.
Saturday & Sunday Jan 10-11, 2009 -- I was pleasantly surprised a few weeks earlier to be assigned to referee six Association Cup games. I was seeing this as my last opportunity to ref for quite a while, so I really appreciated the camaraderie of my fellow referees and the excitement of the players, parents and coaches even more than usual.
I sent an email to Dr Fong Saturday night asking about timing for surgery. Sunday afternoon he replied he would reserve a slot. Does he ever take time off? What a guy!
We now take a break from all the cancer news for some important family news – Lauren received her acceptance letter from the University of Oregon, which was her first choice. As Bonnie says. WooHoo!!! She's a Duck!
I sent an email to Dr Fong Saturday night asking about timing for surgery. Sunday afternoon he replied he would reserve a slot. Does he ever take time off? What a guy!
We now take a break from all the cancer news for some important family news – Lauren received her acceptance letter from the University of Oregon, which was her first choice. As Bonnie says. WooHoo!!! She's a Duck!
Friday Jan 9, 2009 -- Both Pat and Tom had recommended that I get at least one second opinion outside of Kaiser and they both liked their medical oncologist, Dr. Sirott, who had a private practice and worked at John Muir Hospital. I had made an appointment with Dr. Sirott around Dec 16th so I was very disappointed when I was told the day before my appointment that Dr. Sirott was not available and that I would be meeting with Dr. Chen. The meeting was OK but not what I wanted.
Luckily, a retired Chevron friend, who had his cancer treated at UCSF, referred me to his oncologist who in turn referred me to the Chairman of the Head and Neck Surgery Department at UCSF. So I now had an opportunity to get an opinion from one of the top cancer centers in the US.
Luckily, a retired Chevron friend, who had his cancer treated at UCSF, referred me to his oncologist who in turn referred me to the Chairman of the Head and Neck Surgery Department at UCSF. So I now had an opportunity to get an opinion from one of the top cancer centers in the US.
Wednesday Jan 7, 2009 -- We met with Dr. Liu, my Kaiser medical oncologist. We went through our list of questions and discussed my case and the treatment options available. Walnut Creek Kaiser doesn’t have radiation facilities so Dr. Liu referred me a radiation oncologist at John Muir–Concord.
That evening I refereed my last high school soccer match of the season. My weekday schedule now was too unpredictable to try to get more games.
That evening I refereed my last high school soccer match of the season. My weekday schedule now was too unpredictable to try to get more games.
Wednesday Dec 31, 2008 -- Bonnie and I met Dr. Bryan Fong for the first time today. He had an extensive bio on the Kaiser website and I had liked what I had read. I had prepared a list of questions for him. We talked for more than 1.5 hours and at the end of that time I felt lucky to have him involved in my case. He is quietly competent with excellent listening skills and the ability to communicate effectively with people of varying depth of understanding of their medical condition and the treatment options available to them. Over the next month my respect and trust of him continued to grow. He has been a critical resource for me during the treatment program decision process.
Later that evening Bonnie and I were at our traditional "Gourmet Group" New Year’s Eve dinner and I noticed that I had a phone message. I thought it was one of the kids. It was Dr. Fong who had called me at 8:30 on New Year’s Eve to answer one of my questions and let me know he had set up an appointment with a medical oncologist for me the following week! Over the next several weeks I sent Dr Fong numerous emails with lists of questions. I got replies to 10:00 pm emails at 10:30 pm. I got replies on weekends. I knew it wasn’t possible, but it seemed like I was his only patient.
Later that evening Bonnie and I were at our traditional "Gourmet Group" New Year’s Eve dinner and I noticed that I had a phone message. I thought it was one of the kids. It was Dr. Fong who had called me at 8:30 on New Year’s Eve to answer one of my questions and let me know he had set up an appointment with a medical oncologist for me the following week! Over the next several weeks I sent Dr Fong numerous emails with lists of questions. I got replies to 10:00 pm emails at 10:30 pm. I got replies on weekends. I knew it wasn’t possible, but it seemed like I was his only patient.
Thursday Dec 25, 2008 -- I expected that this would be a terribly depressing Christmas for the family but it wasn’t depressing at all. I think all of us were more focused on family than ever before, so it was a very good Christmas. My mood had been steadily improving since we told the kids and I was getting all the hugs I desired.
Wednesday Dec 24, 2008 -- Our family went to our friends, the McGoverns, for Christmas Eve dinner. Bonnie and I (mostly Bonnie) had spent the previous couple days collecting the ingredients and starting the preparation for two of our traditional Christmas Eve dishes, ,potato rolls and coconut beer-battered shrimp, to take to the dinner.
The shrimp are best eaten minutes after they are prepared and they are deep-fried three at a time which means I cook while others eat. Every year this drives Bonnie a little crazy, but I don’t cook nearly as often as she does so I don’t mind. It has become part of the tradition! This year, since it was raining, I set up the fryer in the McGoverns’ garage to keep the smell out of the house. It turned out that a large part of the party ended up in the garage with me! Everyone was talking and eating the shrimp as soon as they were ready. I probably made 40 shrimp before any were carried inside.
The shrimp are best eaten minutes after they are prepared and they are deep-fried three at a time which means I cook while others eat. Every year this drives Bonnie a little crazy, but I don’t cook nearly as often as she does so I don’t mind. It has become part of the tradition! This year, since it was raining, I set up the fryer in the McGoverns’ garage to keep the smell out of the house. It turned out that a large part of the party ended up in the garage with me! Everyone was talking and eating the shrimp as soon as they were ready. I probably made 40 shrimp before any were carried inside.
Tuesday Dec 23, 2008 -- A friend puts me in touch with Glen. Glen was treated for tongue squamous cell cancer last summer at UCSF in a clinical trial and really loved his doctors there. I had quite a few conversations with him over the next couple of months as he helped me with advice and encouragement. Glen put me in touch with Diane who has the same cancer as me. My conversations with Glen, Diane and Tom were invaluable in helping me make my treatment decisions.
Monday Dec 22, 2008 -- The next step after the PET scan that indicated my left tonsil was the likely primary tumor was a biopsy of my left tonsil.
I met Dr Huang at the Antioch facility, where she was working that Monday. After a spray of a topical and an injection of local anesthetic, three tissue samples were removed. I expected them to be cut out but it felt more like ripped out; not painful but not pleasant either. Dr. Huang said she would refer me to Dr. Fong for consultation. I didn’t know it then but I would later be very happy that I had Dr. Fong on my team.
I met Dr Huang at the Antioch facility, where she was working that Monday. After a spray of a topical and an injection of local anesthetic, three tissue samples were removed. I expected them to be cut out but it felt more like ripped out; not painful but not pleasant either. Dr. Huang said she would refer me to Dr. Fong for consultation. I didn’t know it then but I would later be very happy that I had Dr. Fong on my team.
Friday Dec 19, 2008 -- This was the day we were going to tell the kids. We decided to go out for a family dinner and then tell them when we got home. Up to this point I had been unable to break the news to anyone face-to-face without choking up. Telling our kids was no exception. A poor start to the holiday week but things gradually improved.
Wednesday Dec 17, 2008 -- PET scan was taken – fascinating technology. A modified glucose molecule with radioactive fluorine (half life 110 minutes) is injected; then after a 45 minute wait the scan is taken. The fluorine when it decays emits a positron which quickly finds an electron and they annihilate each other (matter and antimatter) and emit 2 gamma ray photons 180 degrees from each other. The cancer cells preferentially take up the radioactive glucose and can’t get rid of it until the fluorine undergoes radioactive decay.
Since I understood the technology and the next patient had cancelled, I got to look at my scans. The nuclear medicine doctor pointed out the large absorption in my kidneys and urinary tract that was being eliminated and the lower but higher than background absorption from my heart and brain which use more energy than anything else while at rest. The good news was that I could clearly identify the missing primary site in my left tonsil. It helps to know where things started. More good news was that there were only 2 abnormal absorptions – the left tonsil and the already identified lymph node. No additional sites were observed. The bad news was that the probability of my doctor calling to apologize for incorrectly informing me that I had cancer now went to zero.
Since I understood the technology and the next patient had cancelled, I got to look at my scans. The nuclear medicine doctor pointed out the large absorption in my kidneys and urinary tract that was being eliminated and the lower but higher than background absorption from my heart and brain which use more energy than anything else while at rest. The good news was that I could clearly identify the missing primary site in my left tonsil. It helps to know where things started. More good news was that there were only 2 abnormal absorptions – the left tonsil and the already identified lymph node. No additional sites were observed. The bad news was that the probability of my doctor calling to apologize for incorrectly informing me that I had cancer now went to zero.
Saturday Dec 13, 2008 -- Bonnie and I met with our two survivor guides, Pat and Tom. We talked with Pat for 2 hours over lunch. I mostly listened while Bonnie took notes. It was fascinating hearing his story. So much to absorb. We met with Tom for 2 hours in the late afternoon. Again a massive amount of data to absorb. Everyone at work knows how much I love data. ;-) The subliminal part of the meetings had a big impact too – they went through what I am facing and they SURVIVED! The other change from the meetings was that I had less fear of the cancer but more fear of the treatment.
Friday Dec. 12, 2008 -- I woke up exhausted. I had an appointment with Kevin, my supervisor, to discuss my 2008 performance and fill out the necessary paperwork. I was a mess. Thankfully talking about work temporarily distracted me from thinking about cancer. Kevin was very supportive and indicated that I could telecommute more often if necessary once the treatments started. Later in the day Bonnie and I met with our financial advisor to discuss upcoming college expenses and the recent crummy market performance. We discussed financially preparing for the worst outcome of my cancer. I was numb. The downward spiral continued unabated until, on the way home, I called Tom to arrange a time to talk. Tom is a survivor of the same cancer in a slightly different location.
Tom threw me the lifeline I so desperately needed. He told me, “Stop surfing the internet. Most of the survival data includes data from 40 years ago. The cure rates are far greater today. I was stage 4 and my cancer is gone.” The effect was immediate. The relentless downward spiral reversed. Since that moment I have had some bad days and some restless nights; I’ve often hoped I would wake from this bad dream, but I’ve never returned to anywhere close to that deep dark hole I suffered in during those first 24 hours.
Tom threw me the lifeline I so desperately needed. He told me, “Stop surfing the internet. Most of the survival data includes data from 40 years ago. The cure rates are far greater today. I was stage 4 and my cancer is gone.” The effect was immediate. The relentless downward spiral reversed. Since that moment I have had some bad days and some restless nights; I’ve often hoped I would wake from this bad dream, but I’ve never returned to anywhere close to that deep dark hole I suffered in during those first 24 hours.
Bonnie's Post
When I first heard that Todd might have cancer, I could not process that thought. He has been part of my life since that fateful night we met in Chicago 28 years ago (we're coming up on our 20th anniversary this June). I simply can't imagine life without him. No. No. No. It's just a black hole.
When he called me at work to tell me he had been diagnosed with cancer, I was at my desk. It was so unreal -- I felt I could hardly breathe. I heard this wailing sound I remember hearing the day my mother called our house to tell us my 15 year old brother had died in the hospital from a heart condition. It was the wailing sound my grandmother had made as she held the phone in her hand. That sound was coming from me...
When I first heard that Todd might have cancer, I could not process that thought. He has been part of my life since that fateful night we met in Chicago 28 years ago (we're coming up on our 20th anniversary this June). I simply can't imagine life without him. No. No. No. It's just a black hole.
When he called me at work to tell me he had been diagnosed with cancer, I was at my desk. It was so unreal -- I felt I could hardly breathe. I heard this wailing sound I remember hearing the day my mother called our house to tell us my 15 year old brother had died in the hospital from a heart condition. It was the wailing sound my grandmother had made as she held the phone in her hand. That sound was coming from me...
Thursday Dec 11, 2008 -- About 3:45 on my way to WCI - I don’t usually pull off the road to take a call when I’m driving but for some reason I decided to do that when I heard my phone ring on my way to Carolyn’s practice. Carolyn and one of her club soccer teammates had decided to coach the middle school soccer team rather than tryout for the high school JV team. I had missed all of her team’s games due to an unlucky combination of business travel, high school reffing and rain cancellations. This was my last chance to watch her coach her team.
The call was Dr. Huang. She said, “I have some bad news. The pathology results indicate you have squamous cell carcinoma. I’ve scheduled you for a CT scan on Monday and a PET scan on Wednesday. Do you have any questions?” I was STUNNED. I think I asked a question or two, but I have no recollection of what I said. I only recall feeling hollow, disconnected from reality. My thoughts seemed dark and sluggish like I’ve imagined the river Styx when I read Greek mythology. And I could feel my thoughts, my emotions descending into some dark depth of hell. I continued on to WCI because I couldn’t consider an alternative. I was on autopilot. I thought of my death. I thought of my family. I felt horrible at the thought of leaving them alone.
I remembered Pat telling me that Mike had helped him when he was first diagnosed with cancer. That Mike had told him how to deal with his family’s reaction to the news. I needed to talk with Pat. I needed to know how to relate to my family. I felt panicked and cut off from them. I needed to call Pat but I wanted to call Bonnie first so she wouldn’t be upset that I told someone else before her. How ludicrous that sounds now! But I wasn’t thinking straight. Dashiell was at WCI too. He wanted a ride home. Carolyn was running her team’s practice. I just kept walking around restlessly looking at my children and feeling so sad that I was going to leave them before they left home. I called Bonnie and gave her the news. Then I hung up so I could call Pat. Stupid. Thoughtless. But I was still stunned. I couldn’t keep more than one thought going at once.
I called Pat. He was in Phoenix. He was immediately focused and sympathetic. (I’m sad to say I know how it feels to be in his shoes now.) He said he’d be home on Friday and we could get together sometime over the weekend. He’d call me on Friday to set a time and place. I semi- came to my senses and called Bonnie back so we could talk. We agreed not to tell the kids until their finals were over, until we knew more. That night I was on the internet until 2 or 3 a.m. The percentages didn’t look good. I went to bed but couldn’t sleep. Earlier my thoughts were sluggish. Now they were racing. Racing downward in tight spirals.
The call was Dr. Huang. She said, “I have some bad news. The pathology results indicate you have squamous cell carcinoma. I’ve scheduled you for a CT scan on Monday and a PET scan on Wednesday. Do you have any questions?” I was STUNNED. I think I asked a question or two, but I have no recollection of what I said. I only recall feeling hollow, disconnected from reality. My thoughts seemed dark and sluggish like I’ve imagined the river Styx when I read Greek mythology. And I could feel my thoughts, my emotions descending into some dark depth of hell. I continued on to WCI because I couldn’t consider an alternative. I was on autopilot. I thought of my death. I thought of my family. I felt horrible at the thought of leaving them alone.
I remembered Pat telling me that Mike had helped him when he was first diagnosed with cancer. That Mike had told him how to deal with his family’s reaction to the news. I needed to talk with Pat. I needed to know how to relate to my family. I felt panicked and cut off from them. I needed to call Pat but I wanted to call Bonnie first so she wouldn’t be upset that I told someone else before her. How ludicrous that sounds now! But I wasn’t thinking straight. Dashiell was at WCI too. He wanted a ride home. Carolyn was running her team’s practice. I just kept walking around restlessly looking at my children and feeling so sad that I was going to leave them before they left home. I called Bonnie and gave her the news. Then I hung up so I could call Pat. Stupid. Thoughtless. But I was still stunned. I couldn’t keep more than one thought going at once.
I called Pat. He was in Phoenix. He was immediately focused and sympathetic. (I’m sad to say I know how it feels to be in his shoes now.) He said he’d be home on Friday and we could get together sometime over the weekend. He’d call me on Friday to set a time and place. I semi- came to my senses and called Bonnie back so we could talk. We agreed not to tell the kids until their finals were over, until we knew more. That night I was on the internet until 2 or 3 a.m. The percentages didn’t look good. I went to bed but couldn’t sleep. Earlier my thoughts were sluggish. Now they were racing. Racing downward in tight spirals.
Tuesday Dec. 9, 2008 -- After two weeks of amoxicillin, the size of the node hadn’t changed so Dr. Saveh made a same day appointment with Dr. Elizabeth Huang, an Ear, Nose and Throat Surgeon (ENT). The same day appointment was worrisome. Dr. Huang took a look throughout my mouth, nose and down my throat with a mirror. She then applied a topical anesthetic to the skin over the lymph node and took 3 fine needle aspiration (FNA) samples, a third because the 2nd just contained blood instead of lymph node cells. The samples were to be sent to pathology and the results were to be available on Friday.
Monday Nov. 24, 2008 -- At my appointment with Dr. Reza Saveh, my GP, he reviewed all 6 or 7 possibilities from a low grade bacterial infection to a variety of benign cysts to lymphoma to squamous cell carcinoma. Hoping for the best, we decided to see if it was a bacterial infection before scheduling a biopsy. The biopsy didn’t sound too enjoyable. The mention of 2 different types of cancer was a scary possibility that faded after I left the doctor’s office but it never really went away completely. I started taking amoxicillin for 2 weeks, celebrated Thanksgiving, and went back to Rotterdam for another week of meetings. Meanwhile, I did some on-line research on lymphoma. Since the lymph node wasn’t tender and the skin wasn’t reddened, a bacterial infection was unlikely.
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