I will update this blog from time to time to let everyone who finds it know how I'm doing. For now though I'd like to close my active treatment blog reports by saying "thank you".
First, I thank my wife Nancy for putting up with "Cancer Dan". She successfully went through breast cancer treatment 4 years ago. Together we're now "two-time cancer ass kickers".
Second, I thank my kids, family and friends for giving me all of 10-seconds of sympathy and then going back to treating me like a normal person (who has no hair and gray skin.)
Third, I thank all the medical professionals, care takers and even the insurance company. I know it's your job but you all gave me much more than I'm sure you were compensated for. You cared about me. I noticed and appreciated that very much.
Fourth, I thank everyone who has walked the cancer path in front of me. Thanks for publishing your treatment blogs. I hope those of you who come down the cancer path behind me find my blog as helpful as the blogs I found and read when I first discovered I had cancer.
Last (but not least), I thank God. Prayer and reflection got me through this ordeal. When things seemed most bleak I would simply think about my favorite line of scripture from Jesus' "Sermon on the Mount", "Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" Matthew 6:26.
Tuesday, December 16, 2008
I'm Cured?
My primary oncologist says, "You're cured!" I guess that's the deal with Hodgkin's. Like testicular cancer & childhood leukemia, Hodgkin's is one of the three "curable" cancers.
My radiation oncologist says, "I use the 'cured' word pretty cautiously". It doesn't really matter to me - I'm just glad I'm no longer in active treatment. Treatment is a huge grind on your time and while you're not being treated you're feeling tired and/or "like crap" all the time.
The elderly "church ladies" are thrilled at my recovery. (Like it or not, when the church ladies discover you're "afflicted" they add you to their official daily prayer requests and you become part of their "prayer job". ) When they ask me on Sundays how I'm doing I assure them that I am in fact cured (and thankful and appreciative). One in particular, Irene, delights in taking me by the arm and introducing me to others as a "walking miracle". She's right.
Whether I "stay cured" for forty years or just forty weeks is not up to me. What's up to me is to live my life now like it will be both.
My radiation oncologist says, "I use the 'cured' word pretty cautiously". It doesn't really matter to me - I'm just glad I'm no longer in active treatment. Treatment is a huge grind on your time and while you're not being treated you're feeling tired and/or "like crap" all the time.
The elderly "church ladies" are thrilled at my recovery. (Like it or not, when the church ladies discover you're "afflicted" they add you to their official daily prayer requests and you become part of their "prayer job". ) When they ask me on Sundays how I'm doing I assure them that I am in fact cured (and thankful and appreciative). One in particular, Irene, delights in taking me by the arm and introducing me to others as a "walking miracle". She's right.
Whether I "stay cured" for forty years or just forty weeks is not up to me. What's up to me is to live my life now like it will be both.
Radiation Done!
The 17 daily radiation treatments are over - and in this season of Thanksgiving, I am. Depending on who you ask, for all practical purposes, I'm cured.
Compared to chemo, the radiation treatments were quite anti-climatic. With each of the eight bi-monthly chemo treatments I got get four hours of people feeling sorry and being nice to me. With chemo it's two quick, 10-second zaps after 15-minutes of waiting for my turn on the machine.
The biggest difference between chemo & radiation is the setup before the first treatment. With chemo there's no setup. With radiation it seemed like a month of setup as I had to meet with a radiation oncologist. Then I had to get measured and fitted to a Styrofoam form to hold me still while being radiated. Then I had to go through a trial zapping. It just seemed to go on and on before my first actual radiation.
I've posted a stock web photo of what the machine looks like. The technicians position the machine above you using lasers lining up to little tattoo dots they put on your chest and then zap you from above. The whole machine then rotates around and then you get zapped from below. All the while you're lying on a Styrofoam form on a table.
The worse part of the treatment is the skin area that gets radiated (for me it was the upper left quadrant of my chest & back) gets pretty crusty for about two or three weeks after the treatment is over. (Kind of like a party favor!)
The people at the radiation treatment center were very nice though from the technicians, to the nurse and my radiation oncologist, Dr. Washington. They gave me a nice completion certificate after my last treatment.
Compared to chemo, the radiation treatments were quite anti-climatic. With each of the eight bi-monthly chemo treatments I got get four hours of people feeling sorry and being nice to me. With chemo it's two quick, 10-second zaps after 15-minutes of waiting for my turn on the machine.The biggest difference between chemo & radiation is the setup before the first treatment. With chemo there's no setup. With radiation it seemed like a month of setup as I had to meet with a radiation oncologist. Then I had to get measured and fitted to a Styrofoam form to hold me still while being radiated. Then I had to go through a trial zapping. It just seemed to go on and on before my first actual radiation.
I've posted a stock web photo of what the machine looks like. The technicians position the machine above you using lasers lining up to little tattoo dots they put on your chest and then zap you from above. The whole machine then rotates around and then you get zapped from below. All the while you're lying on a Styrofoam form on a table.
The worse part of the treatment is the skin area that gets radiated (for me it was the upper left quadrant of my chest & back) gets pretty crusty for about two or three weeks after the treatment is over. (Kind of like a party favor!)
The people at the radiation treatment center were very nice though from the technicians, to the nurse and my radiation oncologist, Dr. Washington. They gave me a nice completion certificate after my last treatment.
Wednesday, September 3, 2008
No Visible Cancer in PET Scan!
Last week I had a PET scan to see how good a job the chemo therapy has been doing at killing the cancer in the three areas the cancer appeared in my original PET scan several months ago. To my great relief that doctor called to report that there was no visible cancer but that I still had to do my eighth and last infusion this Thursday. (Had the PET Scan still showed cancer then I may have had to continue the chemo twice a month for two additional months.)
So currently I do my last of eight infusions tomorrow and then I have to get radiated 17 times to kill any microscopic cancer cells in the three tumor areas that might be hiding. After that I've supposedly got a 80% chance of being 100% "cured".
In reality I understand that because the cancer treatment I'm going through is rather carcinogenic itself I have a 10% chance of getting some other cancer within the next 20 years. But hey, I'll take the 20 years and the 90% chance it will be longer since I'm pretty sure I would have been dead in 4 years had I elected not to be treated this time around.
So currently I do my last of eight infusions tomorrow and then I have to get radiated 17 times to kill any microscopic cancer cells in the three tumor areas that might be hiding. After that I've supposedly got a 80% chance of being 100% "cured".
In reality I understand that because the cancer treatment I'm going through is rather carcinogenic itself I have a 10% chance of getting some other cancer within the next 20 years. But hey, I'll take the 20 years and the 90% chance it will be longer since I'm pretty sure I would have been dead in 4 years had I elected not to be treated this time around.
Neutropenic Hospital Stay
Sorry I have not posted in a while, killing Cancer is a full time job what with all the doctor appointments and medical tests (not to mention feeling poorly or desperately tired 70% of the time).
The most interesting thing that's happened since my last post is that I ended up in the hospital for about three days, a week and a half after my fourth infusion (half way through). It seems I was having a lot of sweats and was running a fever of about 101 degrees or so off and on for several days. When I mentioned it to my doctor's nurse she told me to go to the emergency room at UCSD and tell them I had a Neutropenic fever and that they would probably admit me.
Sure enough, several hours later the ER doctor was explaining that my ANC count was below 500 and that was not a good thing if I had some sort of fever in my body. So they admitted me to my own room (so I didn't catch someone else's kooties) and started pumping me full of antibiotics from Monday evening through late Wednesday afternoon. Sure enough they ended up killing whatever was causing the fever and got my ANC count way up with a couple injections of Neupogen.
Speaking of injections, they also insisted on giving me a shot of Heparin in the stomach (quite unpleasant no matter how pretty the nurse) every eight hours to "prevent blood clots". After a while I figured out that they try to do that with everyone admitted to the hospital and I was not really all that special. When I knew I was getting out on Wednesday I said, "Thanks, but no thanks" on the last couple injections.
One special note is that if you're going to get stuck in a San Diego hospital I highly recommend UCSD's Thorton hospital. It looks like a fancy hotel and as a patient you order your three meals a day from what looks like a hotel room service menu. The food was excellent and it's even served by someone in a room service uniform. (Best thing about it is you don't have to tip them!)
The most interesting thing that's happened since my last post is that I ended up in the hospital for about three days, a week and a half after my fourth infusion (half way through). It seems I was having a lot of sweats and was running a fever of about 101 degrees or so off and on for several days. When I mentioned it to my doctor's nurse she told me to go to the emergency room at UCSD and tell them I had a Neutropenic fever and that they would probably admit me.
Sure enough, several hours later the ER doctor was explaining that my ANC count was below 500 and that was not a good thing if I had some sort of fever in my body. So they admitted me to my own room (so I didn't catch someone else's kooties) and started pumping me full of antibiotics from Monday evening through late Wednesday afternoon. Sure enough they ended up killing whatever was causing the fever and got my ANC count way up with a couple injections of Neupogen.
Speaking of injections, they also insisted on giving me a shot of Heparin in the stomach (quite unpleasant no matter how pretty the nurse) every eight hours to "prevent blood clots". After a while I figured out that they try to do that with everyone admitted to the hospital and I was not really all that special. When I knew I was getting out on Wednesday I said, "Thanks, but no thanks" on the last couple injections.
One special note is that if you're going to get stuck in a San Diego hospital I highly recommend UCSD's Thorton hospital. It looks like a fancy hotel and as a patient you order your three meals a day from what looks like a hotel room service menu. The food was excellent and it's even served by someone in a room service uniform. (Best thing about it is you don't have to tip them!)
Sunday, July 20, 2008
Chemo Me More, I'm Loving it!
I've now had four of my eight scheduled chemo infusions. The following information is primarily for you all trying to anticipate what your own pending chemo will be like.
1. Hair Loss? Yes. Eighty percent fell out three days after my second infusion. Three days later I cut the rest off.
2. Nausea, vomiting, heartburn, dry mouth, diarrhea, constipation or weigh loss? Yes, no, yes, yes, I wish, YES and just starting. After two months and four infusions my gut is suddenly very concerned about what I eat. If I think it will make my poop hard I will not eat it. Why? Click here. I gained five pounds over the first two months of chemo. I think I'll now give that back and then some over the next two months.
3. Slow healing nicks, cuts & viruses? That's a big yes. The problem is except for feeling "different" all the time during chemo - you can't really specifically tell that your white blood count has dropped to almost non-existent and is just barely recovering before the next infusion 14 days later. Every little cut takes four times the normal time to heal. Hang nail? I got band aids for that. This? Ongoing ouchy! Prevention, prevention, prevention. Does your kid have a snuffly nose & a low grade temperature from some unknown "kid virus". If you get it it'll last a week or more where your kid might shake it in a a couple days. I've gone to wearing those lovely blue paper face masks whenever I go into a crowd.
4. Ability to tolerate chemo regimen without interruption? Almost. Before my chemo started my oncologist said it was VERY important to stay with the full treatment without interruption from the side effects. I assured the doctor that would not be a problem. I figure that at 6'2" and 215 pounds I'm a pretty macho dude (at least that's what Nancy assures me of). Ten days after my very first infusion though the hospital lab calls me to tell me my blood count has not recovered enough to have my second scheduled infusion 4 days later. My doctor advised that I needed a shot of Neupogen the next day to raise my white blood count and even hope to have the scheduled infusion three or four days late. Neupogen shots cost $75 each but only if I give the shot to myself and then only if my insurance carrier's selected online pharmacy sends them to me overnight. I've had to give myself a shot after my first & third infusion. In addition to low blood counts, after my first infusion I told my doctor that I didn't poop or even fart for about 10 days. That caused him to be very concerned about paralytic ileus, a possible side effect from the Vinblastine - the "V" in ABVD. He took me off Vinblastine for the second infusion and then ramped it back up. I protested but he assured me that ileus was not to be trifled with and I needed to do whatever it took to become "Mr. Soft Poop".
5. Fatigue and chemo brain? Yes. After the first couple infusions I'd sleep about 24 hours straight on the third & fourth day after the infusion and then need an afternoon nap every other day. I still need naps everyday and the 24 hour nap need can fall on any of the 14 days. My ability to concentrate on something lasts about 15 minutes. Reading the paper? I need a nap afterwards.
6. Bottom line? Chemo sucks!
1. Hair Loss? Yes. Eighty percent fell out three days after my second infusion. Three days later I cut the rest off.
2. Nausea, vomiting, heartburn, dry mouth, diarrhea, constipation or weigh loss? Yes, no, yes, yes, I wish, YES and just starting. After two months and four infusions my gut is suddenly very concerned about what I eat. If I think it will make my poop hard I will not eat it. Why? Click here. I gained five pounds over the first two months of chemo. I think I'll now give that back and then some over the next two months.
3. Slow healing nicks, cuts & viruses? That's a big yes. The problem is except for feeling "different" all the time during chemo - you can't really specifically tell that your white blood count has dropped to almost non-existent and is just barely recovering before the next infusion 14 days later. Every little cut takes four times the normal time to heal. Hang nail? I got band aids for that. This? Ongoing ouchy! Prevention, prevention, prevention. Does your kid have a snuffly nose & a low grade temperature from some unknown "kid virus". If you get it it'll last a week or more where your kid might shake it in a a couple days. I've gone to wearing those lovely blue paper face masks whenever I go into a crowd.
4. Ability to tolerate chemo regimen without interruption? Almost. Before my chemo started my oncologist said it was VERY important to stay with the full treatment without interruption from the side effects. I assured the doctor that would not be a problem. I figure that at 6'2" and 215 pounds I'm a pretty macho dude (at least that's what Nancy assures me of). Ten days after my very first infusion though the hospital lab calls me to tell me my blood count has not recovered enough to have my second scheduled infusion 4 days later. My doctor advised that I needed a shot of Neupogen the next day to raise my white blood count and even hope to have the scheduled infusion three or four days late. Neupogen shots cost $75 each but only if I give the shot to myself and then only if my insurance carrier's selected online pharmacy sends them to me overnight. I've had to give myself a shot after my first & third infusion. In addition to low blood counts, after my first infusion I told my doctor that I didn't poop or even fart for about 10 days. That caused him to be very concerned about paralytic ileus, a possible side effect from the Vinblastine - the "V" in ABVD. He took me off Vinblastine for the second infusion and then ramped it back up. I protested but he assured me that ileus was not to be trifled with and I needed to do whatever it took to become "Mr. Soft Poop".
5. Fatigue and chemo brain? Yes. After the first couple infusions I'd sleep about 24 hours straight on the third & fourth day after the infusion and then need an afternoon nap every other day. I still need naps everyday and the 24 hour nap need can fall on any of the 14 days. My ability to concentrate on something lasts about 15 minutes. Reading the paper? I need a nap afterwards.
6. Bottom line? Chemo sucks!
Bald is Beautiful
When I asked my oncologist about the recommended ABVD chemo treatment he assured me that it was one of the gentler chemo regimens. I asked him, "Will I would go bald?". He said "no".
I should have asked him, "Will eighty percent of my hair fall out and make me look like some kind of pathetic cancer freak seeking sympathy from all who cast their eyes in my general direction?"
To make a long story short, about two days after my second infusion my hair started falling out in big clumps in the shower, all over my bed pillow and pretty much every where else in the house that I touched my hair. Slicking my hair back with gel only made me look like an 80 year old still trying to get away with a "comb over".
After three extremely depressing days I decided to seize control and the car keys. Sixty minutes later I was beautifully bald thanks to a friendly old fashioned barber shop and a modest investment of $10.75.
Getting bald is easier than staying bald though. After about a week I noticed that about 10% of my hair was still growing. So I decided that I would try to "Nair the hair off" with that creamy stuff that women use on their legs in the shower. (Personal note: Don't put Nair on your scalp when your scalp is sunburned and peeling. Ouch!)
It seems the best way to stay bald is to use a disposable razor with a lubricating strip & hair conditioner. I've also bought an electric razor to see if that might be the best daily way to "stay beautiful".
I should have asked him, "Will eighty percent of my hair fall out and make me look like some kind of pathetic cancer freak seeking sympathy from all who cast their eyes in my general direction?"
To make a long story short, about two days after my second infusion my hair started falling out in big clumps in the shower, all over my bed pillow and pretty much every where else in the house that I touched my hair. Slicking my hair back with gel only made me look like an 80 year old still trying to get away with a "comb over".
After three extremely depressing days I decided to seize control and the car keys. Sixty minutes later I was beautifully bald thanks to a friendly old fashioned barber shop and a modest investment of $10.75.
Getting bald is easier than staying bald though. After about a week I noticed that about 10% of my hair was still growing. So I decided that I would try to "Nair the hair off" with that creamy stuff that women use on their legs in the shower. (Personal note: Don't put Nair on your scalp when your scalp is sunburned and peeling. Ouch!)
It seems the best way to stay bald is to use a disposable razor with a lubricating strip & hair conditioner. I've also bought an electric razor to see if that might be the best daily way to "stay beautiful".
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