First, let's get this out of the way up front. I was never normal to begin with, so what makes any of the Drs. think I'll ever be "normal" again? It's been 4 1/2 months since my last daily chemo treatment, but the side effects just aren't going away like we'd hoped. Still have nausea and it's many fun manifestations. But I'm kinda used to them. Can be a little(lot) inconvenient. Still have nasty muscle cramps even in the middle of the night. You don't get used to those. Headaches, spasms and the neuropathy is interesting and sometimes helpful. I took a big chunk out of my left forearm a couple weeks ago. Thanks to neoropathy, I didn't even feel it! No nerves no pain! Still some crawlies feelings. Chemo brain. Sleeplessness. Weakness. I said, "But you told me that the side effects would go away after a couple of months". Then they (the Drs.) remember..."But then again, you had chemo every day with no break for 3 1/2 years, so it's no wonder." Do not get me wrong. I am doing wonderfully better than I was even just a year ago. I am a very blessed guy. So basically we come back to their (the Drs.) excuse: "We never expected you to make it this far and we're all in uncharted waters here", and there you have it.
Here's what we do know. The numbers have started going up. Not to a degree where I don't have to worry, but up is up. Liver function, up. Kidney function, up. Platelets, up! Hemoglobin, up. Cancer numbers...up, but again not enough to worry about yet. Just one problem area popped up, but I'm not going to tell you unless it's still a problem next time.
So it's 37 months since my diagnosis and "I'm not dead yet", nor am I even "mostly dead". I, thanks to God and all of you and your prayers and help, am all alive. Thank you. We love and appreciate you and your support over the past 3 years.
Sunday, September 30, 2012
Sunday, September 16, 2012
LIFE & TIMES OF THE "SPECIAL STUDY"
So during my visit to San Francisco I wasn't with Dr. Wolf 30 seconds before he said, without any prompting from me, "September 13 is the 3 year anniversary of your 1st visit to us. Nobody thought you'd ever make it, but here you are." In conversation the whole 'Miracle Patient" and 'Special Study" was discussed. We both were shaking our heads and laughing.
I brought up 2 cakes and some cookies with me to celebrate the anniversary. 1 was for Dr. Wolf and all of his staff. 1 was for the nurses at the 11th and 14th floors of the hospital who helped keep me alive through everything including the bone marrow/stem cell transplant. On both cakes I ripped off a couple of lines from movies and had them inscribed (or is it inicinged?). You'll have to guess which movies. They said; "I'm not dead yet!" and "I'm only MOSTLY dead." They all loved it and wouldn't even cut into it until everyone had a chance to see it. The cookies were for Dr. Burch my orthopedic spine surgeon and his staff, who have allowed me to stop knuckle dragging and be more less active. Thanks to Rod Blackner and his staff at the Culinary Academy for the goodies.
So here's the deal... My numbers on my internal organs are not going up as quickly as they would have liked or anticipated. But, as Dr. Wolf reminded me, I'm not only a special study, but apparently a slow learner as well. Some of my numbers had gone down, but not to a degree that would require any immediate medical attention. Liver function up very slightly, but UP! Kidney function up from about 20% to about 24%, but UP! Red and white blood cells down a little, but that's never too unusual. Platelets were down significantly, and that's not good, but not to the point where I'd need an infusion again. The cancer numbers are up, but not to the point of requiring getting back on the daily chemo just yet. I'll be doing labs with Dr. Malone in SLO in a week, so they're keeping close tabs on it. So the I still have many medications but way less than even a year ago, and less frequently.
Another interesting thing that Dr. Wolf and i talked about was the frequent and sometimes significant pain in my right hip. He wondered if it was because of the cancer that literally ate through the bone and socket and which had the equivalent of 5 weeks of radiation done to it in 5 days to try and knock it down before it ate up the whole thing, or if it was simply arthritis. I told him that personally I didn't care which and would like the pain to go away if it can. We'll do an MRI and see what's up. Another chapter in the saga. Don't hold your respective breaths, however. It's not an emergency so who knows how long it will take to get approved.
I again stayed with Dan and Joan Murphy. Joan is the sister to my friend Dennis' wife, Marie. They are such a delight. I was beat from my long day, and must have said, "Well, I should be going to bed soon" at least 5 times before I finally did. It was after midnight! THAT's how fun they are. We also had dinner at a great restaurant called Boulevard Cafe in Daly City. It's on John Daly Boulevard just off of the 280. It was great! If you're ever up in the area, you should really try it. Dennis is doing OK, but is in another study. The Drs. can't figure out how he can be doing so well when his numbers are so bad. We know. Wink, wink.
Because Dr. Wolf couldn't get me an MRI on Fri, my kidney functions didn't require a visit to the nephrologist (kidney doc) and I had seen everyone I needed to see, I was free to go on Fri. The weather was wonderful. Dan and Joan knew it was because of me and begged me to stay the weekend as they had some birding and other activities to do and needed my good weather, but alas, I could not stay. So I headed down Hwy 1 and the coast route instead of the 101 or 280. Stopped in Pacifica and dropped in on a high school friend, Sheryl Lex-Smith, which is always nice. She's such a nice person. Someday when I grow up I want to be nice like her too. I walked the pier. Took some pictures. Drove down to Half Moon Bay and had lunch at a great little sandwich shop. I parked downtown and looked around for someone to ask where i should eat. Ah ha! The UPS guy. He was right. Bread baked every day. Great. Don't remember the name, but I could describe how to get there if you asked me. It's next to the old hotel downtown, and has a great patio area.
So there you go. That's the latest for now. Thank you all for your continued love and support. I'll have another report when I get all my labs back from Dr. Malone around the 4th of October. So I'll update you then unless something really, really good happens, or really, really bad happens. Forget the bad. Just good.
I brought up 2 cakes and some cookies with me to celebrate the anniversary. 1 was for Dr. Wolf and all of his staff. 1 was for the nurses at the 11th and 14th floors of the hospital who helped keep me alive through everything including the bone marrow/stem cell transplant. On both cakes I ripped off a couple of lines from movies and had them inscribed (or is it inicinged?). You'll have to guess which movies. They said; "I'm not dead yet!" and "I'm only MOSTLY dead." They all loved it and wouldn't even cut into it until everyone had a chance to see it. The cookies were for Dr. Burch my orthopedic spine surgeon and his staff, who have allowed me to stop knuckle dragging and be more less active. Thanks to Rod Blackner and his staff at the Culinary Academy for the goodies.
So here's the deal... My numbers on my internal organs are not going up as quickly as they would have liked or anticipated. But, as Dr. Wolf reminded me, I'm not only a special study, but apparently a slow learner as well. Some of my numbers had gone down, but not to a degree that would require any immediate medical attention. Liver function up very slightly, but UP! Kidney function up from about 20% to about 24%, but UP! Red and white blood cells down a little, but that's never too unusual. Platelets were down significantly, and that's not good, but not to the point where I'd need an infusion again. The cancer numbers are up, but not to the point of requiring getting back on the daily chemo just yet. I'll be doing labs with Dr. Malone in SLO in a week, so they're keeping close tabs on it. So the I still have many medications but way less than even a year ago, and less frequently.
Another interesting thing that Dr. Wolf and i talked about was the frequent and sometimes significant pain in my right hip. He wondered if it was because of the cancer that literally ate through the bone and socket and which had the equivalent of 5 weeks of radiation done to it in 5 days to try and knock it down before it ate up the whole thing, or if it was simply arthritis. I told him that personally I didn't care which and would like the pain to go away if it can. We'll do an MRI and see what's up. Another chapter in the saga. Don't hold your respective breaths, however. It's not an emergency so who knows how long it will take to get approved.
I again stayed with Dan and Joan Murphy. Joan is the sister to my friend Dennis' wife, Marie. They are such a delight. I was beat from my long day, and must have said, "Well, I should be going to bed soon" at least 5 times before I finally did. It was after midnight! THAT's how fun they are. We also had dinner at a great restaurant called Boulevard Cafe in Daly City. It's on John Daly Boulevard just off of the 280. It was great! If you're ever up in the area, you should really try it. Dennis is doing OK, but is in another study. The Drs. can't figure out how he can be doing so well when his numbers are so bad. We know. Wink, wink.
Because Dr. Wolf couldn't get me an MRI on Fri, my kidney functions didn't require a visit to the nephrologist (kidney doc) and I had seen everyone I needed to see, I was free to go on Fri. The weather was wonderful. Dan and Joan knew it was because of me and begged me to stay the weekend as they had some birding and other activities to do and needed my good weather, but alas, I could not stay. So I headed down Hwy 1 and the coast route instead of the 101 or 280. Stopped in Pacifica and dropped in on a high school friend, Sheryl Lex-Smith, which is always nice. She's such a nice person. Someday when I grow up I want to be nice like her too. I walked the pier. Took some pictures. Drove down to Half Moon Bay and had lunch at a great little sandwich shop. I parked downtown and looked around for someone to ask where i should eat. Ah ha! The UPS guy. He was right. Bread baked every day. Great. Don't remember the name, but I could describe how to get there if you asked me. It's next to the old hotel downtown, and has a great patio area.
So there you go. That's the latest for now. Thank you all for your continued love and support. I'll have another report when I get all my labs back from Dr. Malone around the 4th of October. So I'll update you then unless something really, really good happens, or really, really bad happens. Forget the bad. Just good.
Sunday, September 2, 2012
LOT OF 'SPLAINING TO DO! (a la Rickie Riccardo)
Hi everyone (both of you). It's been a long while since I last wrote something and I've been prodded (by both of you) to update the blog, so here goes...
Let me first bring you up to date on the whole cancer thing. This next Thurs. & Fri. I'll be in SF to see my doctors. Thurs. for Dr. Wolf and the oncology/hematology crew, and Fri. with Dr. Burch the orthopedist. So I should have something more specific to tell you after then. I also know that it usually takes me a week or two after my appointments to put it in the blog, so I'll bring you up to date, THEN, give you that info.
It's taken 2 months but my numbers for my internal organs FINALLY started to improve. According to Dr. Tulanian, my liver function is about 10% and my kidneys about 20%. At least they're going up and not down! It will be interesting to see how much they've improved this month. Red blood count hadn't been normal in 35 months, and it hit to bottom of normal range the beginning of August. White blood count's been worse, but it's at the bottom of normal too. Platelets? Barely normal, but normal. The number of cancer cells is doubling every month, BUT, their numbers are low enough that it isn't too distressing to the Drs. The trend is, however. Hoping that trend ends this month with the next test Thurs.or there's a possibility that there's more chemo in my very near future. All in all I'm doing pretty doggone well with more up days and less down days.
Since I last posted I've been able to do some fun things that I'd just like to mention:
First, I was able to go to Europe for 2 weeks from mid to late June. A little southern Germany and Austria, a lot of Switzerland and Italy. I was the informal tour guide for Joyce Olsen and her twin sister Sharon Rushforth. Dale stayed home to take care of her mother. They were wonderful traveling companions and the fact that they paid for my flights, rental car and various activities was very generous. Sugar mommas. The trip was absolutely fabulous and I was able to make some real friends on the trip. We also presented 4 Books of Mormon (2 in German, 2 in Italian) with friends and family there as well. I made it through OK, but paid for it for weeks after.
Second, I was able to attend my 40th high school reunion. That was a lot of fun. It was very well attended and the committee had been contacting people for a year. So much fun to reconnect with old friends. We'd lost quite a few as well, and I was happy not to be on the wall of pictures honoring/remembering them.
Third, I was able to attend the Monterey Historic Races again. The featured marque was Cobra, and it was literally a heart pounding event as the cars went by. The most fun was having some friends and family here for it. My great friend Greg Fisher came from Orange County. My brother Alan flew in from Denver. Dale's brother Rick and his main squeeze Nancy (whom we LOVE) also came from Canyon Lake near Elsinore, and the son of my friend Ken Schmutz, Kenny, came with Darrell and I. Saturday we went back for the concourse cars and it was great fun too.
So, there you go. I'm not dead yet. By the way, August 28th is the 3 year anniversary of my diagnosis. Gee, and in some ways it seems like only a month ago at some times, and a decade a go at others. Best news it, it's still going on. Thanks for all of your love and support. I'll do better with my reporting after my appointments this week. Don't forget to remember my friend Mark Farish in your prayers and fasting as well. He's fighting throat cancer and it is a battle. If you go to the temple, please try and remember to put his name on the prayer rolls.
Let me first bring you up to date on the whole cancer thing. This next Thurs. & Fri. I'll be in SF to see my doctors. Thurs. for Dr. Wolf and the oncology/hematology crew, and Fri. with Dr. Burch the orthopedist. So I should have something more specific to tell you after then. I also know that it usually takes me a week or two after my appointments to put it in the blog, so I'll bring you up to date, THEN, give you that info.
It's taken 2 months but my numbers for my internal organs FINALLY started to improve. According to Dr. Tulanian, my liver function is about 10% and my kidneys about 20%. At least they're going up and not down! It will be interesting to see how much they've improved this month. Red blood count hadn't been normal in 35 months, and it hit to bottom of normal range the beginning of August. White blood count's been worse, but it's at the bottom of normal too. Platelets? Barely normal, but normal. The number of cancer cells is doubling every month, BUT, their numbers are low enough that it isn't too distressing to the Drs. The trend is, however. Hoping that trend ends this month with the next test Thurs.or there's a possibility that there's more chemo in my very near future. All in all I'm doing pretty doggone well with more up days and less down days.
Since I last posted I've been able to do some fun things that I'd just like to mention:
First, I was able to go to Europe for 2 weeks from mid to late June. A little southern Germany and Austria, a lot of Switzerland and Italy. I was the informal tour guide for Joyce Olsen and her twin sister Sharon Rushforth. Dale stayed home to take care of her mother. They were wonderful traveling companions and the fact that they paid for my flights, rental car and various activities was very generous. Sugar mommas. The trip was absolutely fabulous and I was able to make some real friends on the trip. We also presented 4 Books of Mormon (2 in German, 2 in Italian) with friends and family there as well. I made it through OK, but paid for it for weeks after.
Second, I was able to attend my 40th high school reunion. That was a lot of fun. It was very well attended and the committee had been contacting people for a year. So much fun to reconnect with old friends. We'd lost quite a few as well, and I was happy not to be on the wall of pictures honoring/remembering them.
Third, I was able to attend the Monterey Historic Races again. The featured marque was Cobra, and it was literally a heart pounding event as the cars went by. The most fun was having some friends and family here for it. My great friend Greg Fisher came from Orange County. My brother Alan flew in from Denver. Dale's brother Rick and his main squeeze Nancy (whom we LOVE) also came from Canyon Lake near Elsinore, and the son of my friend Ken Schmutz, Kenny, came with Darrell and I. Saturday we went back for the concourse cars and it was great fun too.
So, there you go. I'm not dead yet. By the way, August 28th is the 3 year anniversary of my diagnosis. Gee, and in some ways it seems like only a month ago at some times, and a decade a go at others. Best news it, it's still going on. Thanks for all of your love and support. I'll do better with my reporting after my appointments this week. Don't forget to remember my friend Mark Farish in your prayers and fasting as well. He's fighting throat cancer and it is a battle. If you go to the temple, please try and remember to put his name on the prayer rolls.
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