No pictures this time, so it should go faster for both of us. First of all, I know I've been neglectful in keeping up with this blog. I am bad about it. I'm just weeding out the REALLY interested parties from the "kind of" interested parties. It's an excuse, really. Anyway, some updates....
Back in the beginning of March I was having dinner with Dr. Jeffrey Wolf, the head of the oncology, hematology, bone marrow transplant department (I'm not kidding, that's what it's really called at UCSF) and his very significant other, who happens to be a research nurse at Stanford in their leukemia, myeloma and transplant department, who I'll call J. We're celebrating the 4 year anniversary of my transplant. Dr. Wolf (Jeff to me) turns to me and asks if he can share some of my story with J? Sure, why not? You've shared it with thousands of others at conferences around the world. As he does, she must have said, 'Wow!" a dozen times, with a few "Really"s and "Serious"s thrown in for good measure. Then he dropped the bomb. He said, "And he's IgM." 'What?" "He's IgM!" A slow "Woooow" was her reply.
Now, I know from researching it, and from what he and other Drs. have said about it that IgM is very rare, and they rarely live, but the way he said it, and the way she said it, made me realize that even THEY thought it was something special (at least to them). So I said to Dr. Wolf, "So. I probably should have asked you this before, but how many IgM patients have you had?" Before I tell you his answer, a little history on him, in case you don't remember. He's been working in hematology, and specifically with leukemia and myeloma patients for about 30 years. He started the bone marrow transplant unit at City of Hope. Now it's famous. He started the bone marrow transplant unit at Alta Bates Hospital at Berkeley and made it world class. He came to UCSF 2 years before I got there, and brought all of his best people from Berkeley, and they had to close down their unit. He's treated myeloma exclusively for 14 years. He's the world famous guy that people from all over the world come to be treated by. He speaks at most international leukemia & myeloma seminars. You get the picture. He gives me a wry smile and says, "You're my second." I give him, I'm pretty sure, a dumb look back and ask, 'So what happened to the first one?" "He died in the first year." The Dr. Wolf turns to J and ask her, "You've seen all the pathology on the myeloma patients at Stanford for the past 8 years. How many IgM patients have you had?" She thought for a few seconds and replied, "I can't remember any." And Stanford treats twice as many myeloma patients as UCSF. So I replied, "So when you call me your 'special study', you weren't kidding, were you?" "Nope." "So why haven't you seen more of them?" "They die before they can get to us."
As of May 13th, it's been 2 years since I got off of my daily maintenance chemo. They said 4 months off before the cancer comes back would be good. 6 months great. And 8 months a miracle. How do you explain 2 years, and counting? I've had many great experiences helping other myeloma patients as they contemplated whether or not they should go through the transplant process. One man from Poland who was afraid. The woman next to me at the infusion center during our infusions last Tues. who's had 2 relapses during my time.
During my last visit to UCSF a month ago Lisa Dunn, one of Dr. Wolf's nurse practicioners, handed me a note with a name and telephone number. She explained that the man had real doubts about having the transplant and didn't completely trust them. Dr. Wolf had suggested that she give another patients' name and number to her, but she told me that she felt that I was the right one to speak to him. For privacy reasons I won't tell you his name, but I can tell you that he has a very thick German accent. When I called him we spoke for an hour about Germany, in German. He's from Heidelberg area. He's a chef living in Santa Rosa for now, waiting for his transplant, or further treatments even if he doesn't do the transplant. We talked about Germany more than we talked about our cancer that day. He sees Dr Martin, Dr Wolf's assistant head guy on Tues. July 1st. I see Dr Wolf on Weds. July 2nd. So he's going to come into the city to meet me at the clinic after my appointment so that we can go and have lunch and visit about the transplant. How fun is that? He even called me early Fri morning to verify our 'appointment'. Very German like.
The miracles and blessings just keep coming. I had an opportunity last Thursday while meeting with a client to share my testimony about the power of prayer, the atonement and our Heavenly Father's and Christ's love for us.
Friday on my way home from work I visited with the family of a client that's dying from melanoma after a 2 year battle. Her office is the 2nd door down from mine at work. The family isn't very religious, but knowing that I am, asked me to visit with her about letting go. She'd/they'd been told it would be "only a few days now". What a wonderful blessing it is to understand the plan of salvation, and to be able to share it when it can bring some peace and comfort.
I hope that my experiences can help you understand the marvelous love that our Heavenly Father has for each of us. You all certainly know as I do that of myself I am nothing special. But doing the Lord's will and sharing His love with His children, is special. I'm grateful for that opportunity, and thank you all that have helped me get to where I am through your love, fasting, prayers and friendship. I owe you my life.
Sunday, June 29, 2014
Sunday, November 10, 2013
THERE'S BEEN A WHOLE LOT OF SHAKIN' GOING ON!
What an interesting couple of months. I hope you're not in a hurry, cuz if you are you might as well go on to pinterest or something, or break it into smaller more manageable bites. I know I'm hard to swallow.
Many of you will already know that my dear mother-in-law, Edith Mae Crosby passed away on September 1st as she neared her 93rd birthday. Long story short she finally decided to go, on her own. She stopped all food, water and medications on Tues. and she was gone early Sunday morning. By a wonderful twist of fate her granddaughter, Amberly Watson, delivered her 3rd child, Beckett REID Watson (the middle name is ALWAYS capitalized because he was kind of named for Darrell and ME), that same afternoon. In order to allow Amberly and Beckett REID to attend, we scheduled the funeral service for September 20th. It was a wonderful service and I'm sure Grammy really enjoyed it. It was wonderful to have all of the Crosby clan to visit with. Thank you for being there, always. Thanks to the men's chorus. Grammy LOVED men's choruses.
So, the Weds. night before the funeral I had a small pink spot just below my left knee. Dale & I guessed that it was a spider bite so I took a couple benedryls and put some cortisone cream on it. Worked a long Thurs. then met with all the family for a night before dinner. This is what it looked like by late Thurs night. Hillary suggested that she take me to the ER (it's already 10:30) but I was afraid they'd keep me there too long and it would make me too wiped out for the funeral. Woke up with a burning fever at 3. By 3:30 I'm shivering from the fever so I decide to get up, get ready, grab all of my clothes for the funeral and a shower at the gym. No need to ruin everyone's morning, so I texted Dale that I was going to the ER at 4:45 and headed down the road.
Long story longer, Cellulitis. I had a staff infection that was spreading very quickly. After an early morning talk with my poor oncologist Dr. Malone, the ER Doc, Dr. Hale started pumping me with 3 different antibiotics through my port. Here's the good part.
He was telling me how serious my condition was due to my being "seriously immune deficient". I said, "Well, you can do whatever you want as long as you unhook everything at 8." He just shook his head when I told him that it was my mother-in-laws' funeral and that I had to be at the gym to shower by 8:30 so that I could be at the church at 9 to reherse the men's chorus, which I was leading, then I had to talk, then dedicate the grave after the service. I promised to be back after, and I did around 1. They resumed up the antibiotic infusions and admitted me. This picture is from Sunday. It had spread down my leg, then around the leg. It was very painful, especially to the touch. Dr. Hale said it will take 6 months to fully recover. Still hurts, but is alot better. Has alot of great, funny experiences in the hospital. Made new friends. Made myself at home. Again.
3 days later we traveled down to Orange County for the funeral of a long time friend, Mark Farish. Throat cancer. He was 60. It was a wonderful service and a great tribute. See you soon Mark.
Then off to Utah for a visit with my mom, family, freinds and my 40th missionary reunion. Many of those at Family Camp watched my transformation from skinny to ... stout. Here are a couple missionary pictures:
For those who think that I'm just a goof-off, I posed for this picture to prove you wrong. Love the wallpaper.
Had just a wonderful time at the reunion and saw really quite a lot of the "ol' missionary gang". I believe we had a better turnout than the 30th reunion. We had lost several of our friends too and that was very sad. Our mission President, Hans Wilhelm Kelling spoke. My great Zone Leader in Muenchen (Munich) Bouncin' Bob (Robert) Condie also spoke as the recently released mission president of our old mission to share all of the updates and growth. Scheduled from 6-9, people were there by 5 and we left around 10:30.
The Elder to my right in this photo is none other than Robert Critchfield. I'm not sure where he found the wigs in the Stuttgart Stake center. We were setting up chairs with many missionaries for a Stake Conference at which a young Elder Monson would be visiting. After setting up the chairs, and removal of the wigs, a group of the missionaries were standing in front of the building when the Stake President came out and asked if one of us could translate for Elder Monson during some priesthood interviews. The Pres. had gotten a professional translator for the meetings, but forgot to get one for the meetings before. So guess who got to do it? Sometime, if you're really bored and have absolutely NOTHING else to do, and if you were interested to hear about the experience I'll share. I was kind of waiting until I wrote my "tell all" book and exposee on President Monson, but have since had second thoughts. He could make me a Bishop again. So I had a great time, revisiting with great people. Bob's living in Phoenix and is a dentist. Decent golfer too.
While in Utah we (Dale Darrell & I) also were pleased to attend my nephew Cory's (Brian's oldest son) sealing in the Draper temple. Congratulations to Cory and Courtney. We love you and wish you the best.
We also visited some family, friends and church historical sites. great fun. Thanks Ken and Debbie for meeting us in SLC, and Carrie Connelly for letting us stop by on a very busy day! Love you guys.
The Tues. night after we got back, some good friends from our Long Beach days came for a visit of the central coast from Tacoma Washington. Butch and his buddy Kyle rode their motorcycles from Tacoma to SLC, then to Monterey, then back to Tacoma. Butch's wife, Chelli, didn't. She and Kyle's wife and 2 daughters flew to SLC for Conference, then to San Jose for our fun and frolic. So on Weds. Dale and I, Butch and Chelli hit Monterey, Pacific Grove and Carmel. We had a great time. I'll share a few pictures...
This is at Monterey Bay looking towards Pacific Grove. Butch is the one on the left. He's a counselor (don't remember which) in their Stake Presidency,again. Butch and Chelli were very generous in their support of us during my "down time". It was wonderful to be able to repay them a little for all of their kindness and love.
The famous "Lone Cypress" tree on the 17 mile Drive through Pebble Beach. To me it looks more like the other cypress trees along the shore are making this one "walk the plank". It was a beautiful day. We drove by the golf courses as part of the drive. I've been able to play just 1. The cheap one. No pictures 'cuz of you know who. We truly are very fortunate to be able to live in such a beautiful place. Picked up a couple real estate flyers. Are you ready for this. a 2 acre lot was around 2 million. Homes in "residential" type areas around 4 mil. One place was 17 mil. People live there! Last picture is at the lovely Carmel Mission .
Now on Thurs. we had even more fun as we met with Kyle and his family in Cambria for a special trip to Hearst Castle. Some of you who have followed this blog will remember the King Family with the twins and triplett boys. There father, Brett, is a State Parks Ranger with Artos, his bomb sniffing dog, at the Castle. When we have company, and that company is willing and flexible enough to come when Brett is working, he arranges his schedule to give us an "anywhere you'd like to go" personal tour. If you don't believe me, ask Rich and Joyce Olson. Brett's wife Betsy had breast cancer surgery 2 weeks before, but had help at home so Brett was able to give them a truly "once in a lifetime" tour, including swims in both the Neptune pool (which we've done) and the Roman pool (which even we haven't done). It was chilly water, but a great experience. For them. Thank you Brett for your making this all happen for our friends. And thank you Betsy for letting Brett and Artos come out and play for the day so that our friends could have this experience. Below is a picture of Brett and the twins, Cameron and Carolyn, during their visit with me while I was in the hospital with my Cellulitis. Cameron & Carolyn are great in soccer, and Cam is my golf buddy. They turned 8 on the day of their mother's surgery, Sept. 26th so their baptism has been postponed to Nov. 23rd. We're so excited for them. They have been such a great addition to our family. we love you all.
It's almost over. I warned you! 3 semi-quiet weeks later I'm heading back up to UCSF to see Dr Wolf on Halloween. Then a wonderful stay with the dearest and hospitable people, Joan and Dan Murphy. Then a day of fun and frolic at the Pain Management Center for 4 more radio frequency ablations on the herniated disks at L4-5, and L5-S1. Both sides.
First, the cancer checkup was good and I've gotten all of the tests back (they email them to me). My numbers are up, but not to the point where I have to go back on the daily maintenance chemo. I'm still doing so amazingly well overall and Dr. Wolf just shakes his head and mutters, "You are a special study". Most patients, who have myelomas, have to go back on it about 4-6 months after getting off of the maintenance chemo. I have 2 myeloma friends who didn't have it anywhere near as bad as I did, but had to go back on it after about 6 months. In just 3 days i will have been off of the maintenance chemo for 18 months! Unheard of? Miraculous! This next Fri. I get my quarterly chemo infusion to try and build back up my bones, but that only affects me for a few days every 3 months. I truly lead a charmed and unbelievable blessed life. OK, heading for the stretch run now... but first just a couple of pictures of my exploration of more of Golden Gate Park, just outside UCSF. If you haven't been, it really is quite amazing. It's a HUGE park in the town with many lakes, miles of walking paths, and fascinating things to see. Bison. Yep. They have them.
Fri. Nov. 1st was my second ablation procedure. Those of you who wish to go back to a Feb. '12 post will see more, but I'd like to give you an update on the personnel as well as the procedure. Dr. Melanie Henry, who supervised the last ablation, couldn't do it 'cuz she only works a couple days a week to care for her family. Dr. Naidu, her Fellow (specialized training) is now a real Dr. but was unavailable so I was assigned (she drew the short straw) to Dr. Pham. She and Dr. Henry went to med school, did their fellowships, and now work together. She has a fascinating story about her family escaping from Vietnam when it fell to the Communists. Her father was an officer and pilot in the Vietnamese Air Force and he commandeered a DC-3 troop transport and flew 12 members of his extended family, and many others, to safety in Thailand just at the last minute. Dr. Pham was 11 months old when it happened. I was 19. I know. I'm old. There's a lot more to the story and it's a wonderful story. Here's a picture of Dr. Pham in front of the X-ray screens that they use to locate the offending nerves. Looks like she has Micky ears? I meant that. The dark spot in the pictures is my L4 vertebra with the kyphoplasty (cement) in it. The other 2 are T12 & L1 above it. The speculation is that the weight of the kyphoplasty may have caused the herniated disks below it. Oh well
Next is Nurse Kelly. Some of you may recognize her from the pictures of the procedure done in Feb. '12. She's been doing this for several years and seems to be very competent, but almost bored by it. Or it could be because she has to look at old guy hineys. Eewe. Anyway, due to the pre-procedure shots 2ish months before each procedure, we've become pretty good friends I think. She wouldn't give me her number tho.
Now this next one was funny. This is Michelle. She and I first talked before the shots. She's a former ER nurse who thought she'd had enough of the trauma and drama. She did confide in me, however, that this department really doesn't enough drama for her. She's thinking... Anyway, the funniest part was when I asked her to pose for the picture and you see what she did. She was surprised that I surmised, without really any hesitation at all, that she must have been a cheerleader in school. "How'd you know?" Really?
Now this dashing young (and eligible) man is none other than the soon to be famous Dr. Eli Lynch. Though he claimed a "bad hair day", he still was somehow able to get his mind straight to poke the hell out of me! He is Dr. Pham's Fellow. He also did the "test" shots on me a couple of months ago. Thanks Doc. That's Nurse Kelly getting her hand in there trying to get Dr. Lynch to smile for the picture. It worked. They are all wearing their lead lined aprons. I got NOTHING. I'll probably get radiation cancer next...
So now you've gotten the update that covers what's been going on in my life for the past couple of months. It's a good report as far as I'm concerned. Never dull. Always blessed. Thank you for your continued love and support. Please feel free to call too if you feel so inclined. And a visit would be nice too, if you like.
So, the Weds. night before the funeral I had a small pink spot just below my left knee. Dale & I guessed that it was a spider bite so I took a couple benedryls and put some cortisone cream on it. Worked a long Thurs. then met with all the family for a night before dinner. This is what it looked like by late Thurs night. Hillary suggested that she take me to the ER (it's already 10:30) but I was afraid they'd keep me there too long and it would make me too wiped out for the funeral. Woke up with a burning fever at 3. By 3:30 I'm shivering from the fever so I decide to get up, get ready, grab all of my clothes for the funeral and a shower at the gym. No need to ruin everyone's morning, so I texted Dale that I was going to the ER at 4:45 and headed down the road.
Long story longer, Cellulitis. I had a staff infection that was spreading very quickly. After an early morning talk with my poor oncologist Dr. Malone, the ER Doc, Dr. Hale started pumping me with 3 different antibiotics through my port. Here's the good part.
He was telling me how serious my condition was due to my being "seriously immune deficient". I said, "Well, you can do whatever you want as long as you unhook everything at 8." He just shook his head when I told him that it was my mother-in-laws' funeral and that I had to be at the gym to shower by 8:30 so that I could be at the church at 9 to reherse the men's chorus, which I was leading, then I had to talk, then dedicate the grave after the service. I promised to be back after, and I did around 1. They resumed up the antibiotic infusions and admitted me. This picture is from Sunday. It had spread down my leg, then around the leg. It was very painful, especially to the touch. Dr. Hale said it will take 6 months to fully recover. Still hurts, but is alot better. Has alot of great, funny experiences in the hospital. Made new friends. Made myself at home. Again.
3 days later we traveled down to Orange County for the funeral of a long time friend, Mark Farish. Throat cancer. He was 60. It was a wonderful service and a great tribute. See you soon Mark.
Then off to Utah for a visit with my mom, family, freinds and my 40th missionary reunion. Many of those at Family Camp watched my transformation from skinny to ... stout. Here are a couple missionary pictures:
For those who think that I'm just a goof-off, I posed for this picture to prove you wrong. Love the wallpaper.
Had just a wonderful time at the reunion and saw really quite a lot of the "ol' missionary gang". I believe we had a better turnout than the 30th reunion. We had lost several of our friends too and that was very sad. Our mission President, Hans Wilhelm Kelling spoke. My great Zone Leader in Muenchen (Munich) Bouncin' Bob (Robert) Condie also spoke as the recently released mission president of our old mission to share all of the updates and growth. Scheduled from 6-9, people were there by 5 and we left around 10:30.
The Elder to my right in this photo is none other than Robert Critchfield. I'm not sure where he found the wigs in the Stuttgart Stake center. We were setting up chairs with many missionaries for a Stake Conference at which a young Elder Monson would be visiting. After setting up the chairs, and removal of the wigs, a group of the missionaries were standing in front of the building when the Stake President came out and asked if one of us could translate for Elder Monson during some priesthood interviews. The Pres. had gotten a professional translator for the meetings, but forgot to get one for the meetings before. So guess who got to do it? Sometime, if you're really bored and have absolutely NOTHING else to do, and if you were interested to hear about the experience I'll share. I was kind of waiting until I wrote my "tell all" book and exposee on President Monson, but have since had second thoughts. He could make me a Bishop again. So I had a great time, revisiting with great people. Bob's living in Phoenix and is a dentist. Decent golfer too.
While in Utah we (Dale Darrell & I) also were pleased to attend my nephew Cory's (Brian's oldest son) sealing in the Draper temple. Congratulations to Cory and Courtney. We love you and wish you the best.
We also visited some family, friends and church historical sites. great fun. Thanks Ken and Debbie for meeting us in SLC, and Carrie Connelly for letting us stop by on a very busy day! Love you guys.
The Tues. night after we got back, some good friends from our Long Beach days came for a visit of the central coast from Tacoma Washington. Butch and his buddy Kyle rode their motorcycles from Tacoma to SLC, then to Monterey, then back to Tacoma. Butch's wife, Chelli, didn't. She and Kyle's wife and 2 daughters flew to SLC for Conference, then to San Jose for our fun and frolic. So on Weds. Dale and I, Butch and Chelli hit Monterey, Pacific Grove and Carmel. We had a great time. I'll share a few pictures...
This is at Monterey Bay looking towards Pacific Grove. Butch is the one on the left. He's a counselor (don't remember which) in their Stake Presidency,again. Butch and Chelli were very generous in their support of us during my "down time". It was wonderful to be able to repay them a little for all of their kindness and love.
The famous "Lone Cypress" tree on the 17 mile Drive through Pebble Beach. To me it looks more like the other cypress trees along the shore are making this one "walk the plank". It was a beautiful day. We drove by the golf courses as part of the drive. I've been able to play just 1. The cheap one. No pictures 'cuz of you know who. We truly are very fortunate to be able to live in such a beautiful place. Picked up a couple real estate flyers. Are you ready for this. a 2 acre lot was around 2 million. Homes in "residential" type areas around 4 mil. One place was 17 mil. People live there! Last picture is at the lovely Carmel Mission .
Now on Thurs. we had even more fun as we met with Kyle and his family in Cambria for a special trip to Hearst Castle. Some of you who have followed this blog will remember the King Family with the twins and triplett boys. There father, Brett, is a State Parks Ranger with Artos, his bomb sniffing dog, at the Castle. When we have company, and that company is willing and flexible enough to come when Brett is working, he arranges his schedule to give us an "anywhere you'd like to go" personal tour. If you don't believe me, ask Rich and Joyce Olson. Brett's wife Betsy had breast cancer surgery 2 weeks before, but had help at home so Brett was able to give them a truly "once in a lifetime" tour, including swims in both the Neptune pool (which we've done) and the Roman pool (which even we haven't done). It was chilly water, but a great experience. For them. Thank you Brett for your making this all happen for our friends. And thank you Betsy for letting Brett and Artos come out and play for the day so that our friends could have this experience. Below is a picture of Brett and the twins, Cameron and Carolyn, during their visit with me while I was in the hospital with my Cellulitis. Cameron & Carolyn are great in soccer, and Cam is my golf buddy. They turned 8 on the day of their mother's surgery, Sept. 26th so their baptism has been postponed to Nov. 23rd. We're so excited for them. They have been such a great addition to our family. we love you all.
It's almost over. I warned you! 3 semi-quiet weeks later I'm heading back up to UCSF to see Dr Wolf on Halloween. Then a wonderful stay with the dearest and hospitable people, Joan and Dan Murphy. Then a day of fun and frolic at the Pain Management Center for 4 more radio frequency ablations on the herniated disks at L4-5, and L5-S1. Both sides.
First, the cancer checkup was good and I've gotten all of the tests back (they email them to me). My numbers are up, but not to the point where I have to go back on the daily maintenance chemo. I'm still doing so amazingly well overall and Dr. Wolf just shakes his head and mutters, "You are a special study". Most patients, who have myelomas, have to go back on it about 4-6 months after getting off of the maintenance chemo. I have 2 myeloma friends who didn't have it anywhere near as bad as I did, but had to go back on it after about 6 months. In just 3 days i will have been off of the maintenance chemo for 18 months! Unheard of? Miraculous! This next Fri. I get my quarterly chemo infusion to try and build back up my bones, but that only affects me for a few days every 3 months. I truly lead a charmed and unbelievable blessed life. OK, heading for the stretch run now... but first just a couple of pictures of my exploration of more of Golden Gate Park, just outside UCSF. If you haven't been, it really is quite amazing. It's a HUGE park in the town with many lakes, miles of walking paths, and fascinating things to see. Bison. Yep. They have them.
Fri. Nov. 1st was my second ablation procedure. Those of you who wish to go back to a Feb. '12 post will see more, but I'd like to give you an update on the personnel as well as the procedure. Dr. Melanie Henry, who supervised the last ablation, couldn't do it 'cuz she only works a couple days a week to care for her family. Dr. Naidu, her Fellow (specialized training) is now a real Dr. but was unavailable so I was assigned (she drew the short straw) to Dr. Pham. She and Dr. Henry went to med school, did their fellowships, and now work together. She has a fascinating story about her family escaping from Vietnam when it fell to the Communists. Her father was an officer and pilot in the Vietnamese Air Force and he commandeered a DC-3 troop transport and flew 12 members of his extended family, and many others, to safety in Thailand just at the last minute. Dr. Pham was 11 months old when it happened. I was 19. I know. I'm old. There's a lot more to the story and it's a wonderful story. Here's a picture of Dr. Pham in front of the X-ray screens that they use to locate the offending nerves. Looks like she has Micky ears? I meant that. The dark spot in the pictures is my L4 vertebra with the kyphoplasty (cement) in it. The other 2 are T12 & L1 above it. The speculation is that the weight of the kyphoplasty may have caused the herniated disks below it. Oh well
Next is Nurse Kelly. Some of you may recognize her from the pictures of the procedure done in Feb. '12. She's been doing this for several years and seems to be very competent, but almost bored by it. Or it could be because she has to look at old guy hineys. Eewe. Anyway, due to the pre-procedure shots 2ish months before each procedure, we've become pretty good friends I think. She wouldn't give me her number tho.
Now this next one was funny. This is Michelle. She and I first talked before the shots. She's a former ER nurse who thought she'd had enough of the trauma and drama. She did confide in me, however, that this department really doesn't enough drama for her. She's thinking... Anyway, the funniest part was when I asked her to pose for the picture and you see what she did. She was surprised that I surmised, without really any hesitation at all, that she must have been a cheerleader in school. "How'd you know?" Really?
Now this dashing young (and eligible) man is none other than the soon to be famous Dr. Eli Lynch. Though he claimed a "bad hair day", he still was somehow able to get his mind straight to poke the hell out of me! He is Dr. Pham's Fellow. He also did the "test" shots on me a couple of months ago. Thanks Doc. That's Nurse Kelly getting her hand in there trying to get Dr. Lynch to smile for the picture. It worked. They are all wearing their lead lined aprons. I got NOTHING. I'll probably get radiation cancer next...
So now you've gotten the update that covers what's been going on in my life for the past couple of months. It's a good report as far as I'm concerned. Never dull. Always blessed. Thank you for your continued love and support. Please feel free to call too if you feel so inclined. And a visit would be nice too, if you like.
Sunday, September 1, 2013
LOTS GOING ON. SOME OF IT EVEN GOOD!
This will be a different sort of post for me. Short. Lots to report, not much time.
First, the good news: Saw Dr Wolf on 8/15 and once again I have escaped the requirement of restarting the chemo. I could start it if I wanted to (Oh goody! Can I? Can I?). Like that's something I'm looking forward to, but don't have to if I choose not to. I choose NOT. The miracle is that they thought I would be lucky to be off of the chemo for 4-6 months. It's been 15 and counting! A friend, Dave Mattice had IgA myeloma a couple years ago. He never missed a day of work except for stem cell harvesting & his transplant. No bone, kidney or liver issues. He didn't do the daily chemo. They took him off of his Revlimid after 8 months (vs. my 2 years) and now, just 6 months later he's had to resume it. And here, ladies and gentlemen, is the difference: He was treated at Stanford and not at UCSF by Dr. Wolf et al. Next...
On the back front: On 8/26 reported to Pain Management at UCSF for an anticipated 3 radio frequency ablations at T-11, 12, L-1, and 4 injections on both sides of L-4-5, and L-5, S1 for the herniations. Was informed that the insurance didn't approve all 7 rfa. I had to chose, either the top 3 or bottom 4. I chose the bottom 4. I chose ... wisely. The day after was a long day. When I laid down in bed the throbbing radiated from my lower back up through my head. But no real PAIN. I laid there thinking: I bet if I could feel it, it would be very painful. Throbbing subsided after about 45 minutes or so and I was able to sleep. Next...
Weds. 8/28 was the 4 year anniversary of my diagnosis by Michael Blackwell. Not bad for a guy with an original prognosis of 3-4 months. To celebrate we had dinner last night at Lombardi's. Michael and his wife Tani, Dale, Hillary, Darrell & I had a great time visiting. BTW: Michael got rid of his Prius and bought a used Corvette convertible. I could be prouder if he were my own son.
Last, and on a sadder happier note... my wonderful, dear, sweet mother-in-law, Edith Crosby passed away early this morning. She's been in the care facility for many months now and they have really loved her and taken great care of her. She must have finally decided to move on, as she went pretty quickly. The nurse practitioner called Thurs afternoon to tell us that Grammy had stopped eating and drinking fluids and taking her meds. Darrell and I gave her a blessing of release yesterday afternoon with all of my family there and it was sweet. We are excited for her now. Hillary said that after not being able to talk for the last few years she's probably going a mile a minute with every one on the other side. Our niece, Amberly, has been expecting her 3rd child and was overdue last Monday. Dale made t
First, the good news: Saw Dr Wolf on 8/15 and once again I have escaped the requirement of restarting the chemo. I could start it if I wanted to (Oh goody! Can I? Can I?). Like that's something I'm looking forward to, but don't have to if I choose not to. I choose NOT. The miracle is that they thought I would be lucky to be off of the chemo for 4-6 months. It's been 15 and counting! A friend, Dave Mattice had IgA myeloma a couple years ago. He never missed a day of work except for stem cell harvesting & his transplant. No bone, kidney or liver issues. He didn't do the daily chemo. They took him off of his Revlimid after 8 months (vs. my 2 years) and now, just 6 months later he's had to resume it. And here, ladies and gentlemen, is the difference: He was treated at Stanford and not at UCSF by Dr. Wolf et al. Next...
On the back front: On 8/26 reported to Pain Management at UCSF for an anticipated 3 radio frequency ablations at T-11, 12, L-1, and 4 injections on both sides of L-4-5, and L-5, S1 for the herniations. Was informed that the insurance didn't approve all 7 rfa. I had to chose, either the top 3 or bottom 4. I chose the bottom 4. I chose ... wisely. The day after was a long day. When I laid down in bed the throbbing radiated from my lower back up through my head. But no real PAIN. I laid there thinking: I bet if I could feel it, it would be very painful. Throbbing subsided after about 45 minutes or so and I was able to sleep. Next...
Weds. 8/28 was the 4 year anniversary of my diagnosis by Michael Blackwell. Not bad for a guy with an original prognosis of 3-4 months. To celebrate we had dinner last night at Lombardi's. Michael and his wife Tani, Dale, Hillary, Darrell & I had a great time visiting. BTW: Michael got rid of his Prius and bought a used Corvette convertible. I could be prouder if he were my own son.
Last, and on a sadder happier note... my wonderful, dear, sweet mother-in-law, Edith Crosby passed away early this morning. She's been in the care facility for many months now and they have really loved her and taken great care of her. She must have finally decided to move on, as she went pretty quickly. The nurse practitioner called Thurs afternoon to tell us that Grammy had stopped eating and drinking fluids and taking her meds. Darrell and I gave her a blessing of release yesterday afternoon with all of my family there and it was sweet. We are excited for her now. Hillary said that after not being able to talk for the last few years she's probably going a mile a minute with every one on the other side. Our niece, Amberly, has been expecting her 3rd child and was overdue last Monday. Dale made t
Sunday, July 21, 2013
PLANES, BOATS and AUTOMOBILES
I really do owe anyone who is still trying to keep up with my situation yet another apology. I am so bad at doing this in a timely manner. I'm computerly challenged, old and busted and sometimes just plain lazy! What a bum. So now you'll just have to put up with my long posting this time, or not. For those who have lost interest...I'm still alive, doing reasonably well under the circumstances and am having some fun. There. You may go if you want to. For those who want more details, here we go...
These lovely ladies are the X-ray technicians that started me on the trip I'm on for my back issues. Quick reminder, I have 7 collapsed vertebra. They do not sit flat/even back there. Had the ablation 1 1/2 yrs ago. Pain back about 6 months ago. Got bad. Got worse... From here to MRI then to UCSF with Dr Burch and his "students".. twice. Below is Tiffany,a 3rd year and as you can see by her smile, LOVING her work.
So, to make a long story short, the MRI showed degeneration in the vertebra with increased stenosis (closing), with arthritis in a the left facet of the 12th (bottom) thorasic vertebra (which is also one of the collapsed vertebra & one that has the kyphoplasty cement in it), which makes it, along with T-11 and L-1 candidates for the radio frequency ablation again. We were supposed to start the process Aug 19th. No wait, they changed it to Aug 16th. No, can't do it on that day... Well, I'll let you know. Probably after.
BUT WAIT! THERE'S MORE! The MRI also showed why I was having more lower pain on the left side. 2 herniated disks between L-4,5 and L-5, S-1. Bones still too weak to consider surgery, so? Yes, we just zap those nerves like the upper ones to remove the pain. Now I've noticed that some of you are looking worried, but don't. This will likely not hurt my "golf" game, so you can breathe easier again. If you need a refresher on ablation, go back to the Feb. '12 post about it. It's really not bad at all and works pretty well.
So this is a wall thingy on the wall of my great buddy Dan's house. He's going to figure prominently here in the next post, and you must know that his wife, CYNTHIA, is the one who picked it out and placed it, but I should have this on every wall in my house. So I get the less than stellar news about my back, BUT, I also get a call from Dr. Malone's office. But before I tell you about that, let me remind you also that my cancer numbers had been going up with every test, even to the point where I was instructed to put on 30 lbs in preparation of going back on the chemo any time. I had gotten my quarterly infusion for my bones with the regular side effects. Then the call... cancer numbers HAD GONE DOWN SLIGHTLY, but down is down. And that never happens. What a spoiled rotten blessed person I am. You may be asking, why? I still don't know. But what my blessings of relative health and well being have allowed me to do is this...
Take a sideways picture that I couldn't figure out how to straighten out of the windmill that was a gift to San Francisco's Golden Gate Park from the Queen of Denmark about 100 years ago. It was operational until recently, but has been closed due to safety reasons. But my good friends, DAN and JOAN MURPHY, who are also the kind people who open their home to me for my many visits that require multiple day visits, recently had the opportunity to climb all through it and go up top. Cool. In case you don't remember, Joan is the sister to Marie Lozano, the sister-in-law to Dennis Lozano my one and only room mate at UCSF. The next pictures are of Hwy 1 that runs along the ocean and the sea wall. It was deserted. Actually, it was blocked off for the SF Marathon that was being run the next morning. Had a chance to stop and walk along the beach a little on my way out of town and to San Jose. Quiet. Peaceful. Wierdos there too. Funny.
These two are just great, fun people. Can't you see it in their faces? The first night I was there we stayed up until 1 a.m. before we knew it! Such a gracious Irish couple, who took me to their Irish Cultural Center for their usual Friday night dinner. That is the hall where the gathering part of Dennis' memorial service was, which is upstairs over the dining hall. So here's the dining host, Tommy. Full of Irish, and some golf, jokes. Wasn't too thrilled with me when I told him that my heritage is Scottish and Welsh, but he didn't spit in my food, I think. Just kidding. It was a delightful evening with more great and colorful people.
So that's it for now. But soon, I promise, I'm going to continue this tale with the great 2nd trip to Washington State courtesy of that same friend Dan Stuart that is mentioned above. After being at UCSF for Weds, Thurs and Fri, I headed down to San Jose to fly out to Washington on Sat morning. 'Til then, thank you for your continued support, prayers and friendship. We're nearing the 4 year mark since my diagnosis... Wow.
These lovely ladies are the X-ray technicians that started me on the trip I'm on for my back issues. Quick reminder, I have 7 collapsed vertebra. They do not sit flat/even back there. Had the ablation 1 1/2 yrs ago. Pain back about 6 months ago. Got bad. Got worse... From here to MRI then to UCSF with Dr Burch and his "students".. twice. Below is Tiffany,a 3rd year and as you can see by her smile, LOVING her work.
So, to make a long story short, the MRI showed degeneration in the vertebra with increased stenosis (closing), with arthritis in a the left facet of the 12th (bottom) thorasic vertebra (which is also one of the collapsed vertebra & one that has the kyphoplasty cement in it), which makes it, along with T-11 and L-1 candidates for the radio frequency ablation again. We were supposed to start the process Aug 19th. No wait, they changed it to Aug 16th. No, can't do it on that day... Well, I'll let you know. Probably after.
BUT WAIT! THERE'S MORE! The MRI also showed why I was having more lower pain on the left side. 2 herniated disks between L-4,5 and L-5, S-1. Bones still too weak to consider surgery, so? Yes, we just zap those nerves like the upper ones to remove the pain. Now I've noticed that some of you are looking worried, but don't. This will likely not hurt my "golf" game, so you can breathe easier again. If you need a refresher on ablation, go back to the Feb. '12 post about it. It's really not bad at all and works pretty well.
So this is a wall thingy on the wall of my great buddy Dan's house. He's going to figure prominently here in the next post, and you must know that his wife, CYNTHIA, is the one who picked it out and placed it, but I should have this on every wall in my house. So I get the less than stellar news about my back, BUT, I also get a call from Dr. Malone's office. But before I tell you about that, let me remind you also that my cancer numbers had been going up with every test, even to the point where I was instructed to put on 30 lbs in preparation of going back on the chemo any time. I had gotten my quarterly infusion for my bones with the regular side effects. Then the call... cancer numbers HAD GONE DOWN SLIGHTLY, but down is down. And that never happens. What a spoiled rotten blessed person I am. You may be asking, why? I still don't know. But what my blessings of relative health and well being have allowed me to do is this...
Take a sideways picture that I couldn't figure out how to straighten out of the windmill that was a gift to San Francisco's Golden Gate Park from the Queen of Denmark about 100 years ago. It was operational until recently, but has been closed due to safety reasons. But my good friends, DAN and JOAN MURPHY, who are also the kind people who open their home to me for my many visits that require multiple day visits, recently had the opportunity to climb all through it and go up top. Cool. In case you don't remember, Joan is the sister to Marie Lozano, the sister-in-law to Dennis Lozano my one and only room mate at UCSF. The next pictures are of Hwy 1 that runs along the ocean and the sea wall. It was deserted. Actually, it was blocked off for the SF Marathon that was being run the next morning. Had a chance to stop and walk along the beach a little on my way out of town and to San Jose. Quiet. Peaceful. Wierdos there too. Funny.
These two are just great, fun people. Can't you see it in their faces? The first night I was there we stayed up until 1 a.m. before we knew it! Such a gracious Irish couple, who took me to their Irish Cultural Center for their usual Friday night dinner. That is the hall where the gathering part of Dennis' memorial service was, which is upstairs over the dining hall. So here's the dining host, Tommy. Full of Irish, and some golf, jokes. Wasn't too thrilled with me when I told him that my heritage is Scottish and Welsh, but he didn't spit in my food, I think. Just kidding. It was a delightful evening with more great and colorful people.
So that's it for now. But soon, I promise, I'm going to continue this tale with the great 2nd trip to Washington State courtesy of that same friend Dan Stuart that is mentioned above. After being at UCSF for Weds, Thurs and Fri, I headed down to San Jose to fly out to Washington on Sat morning. 'Til then, thank you for your continued support, prayers and friendship. We're nearing the 4 year mark since my diagnosis... Wow.
Monday, April 29, 2013
"M" is for (my) Cancer(s)
Some of you may remember from WAY back in this blog that UCSF sprung for a very expensive gene survey to see if I had the anti-cancer gene. Unfortunately, it is yet one more thing I'm lacking in. Dr. Wolf's comment at that time was, "Well, it looks like it will probably be cancer that will get you in the end. It'll be interesting to see which one finally gets you". Apparently, as it comes to cancer, I'm not very creative. Let me explain.
'Back in the summer of '99 (spoken like a old grandfather) I had a melanoma tumor in my right shoulder blade area and they took out a chunk about the size of a woman's fist" (make the gesture of a fist). "Plus another one about the size of a large ball bearing 6 months later, then another smaller one the size of a marble 1 year after that. Then, nothing but pre-cancers for years."
Then, in '09 it was MULTIPLE MYELOMA. Not only that, but of the 3 types, IgA, IgG, I get... you guessed it, IgM! myeloma. Apparently I'm so uncreative with my cancers that I can't get past the "M" ones.
So Dr. Wolf's been prepping me for the possibility of "other related cancers" since we started the daily chemo in May of '10. Bladder, liver, kidney, pancreatic were all possibilities.
So last week I go to have my usual pre-cancers removed and guess what. Biopsy. Positive for ...yep, I'm so uncreative when it comes to cancer that I just can't seem to shake the "M" kinds. A small melanoma the size of a quarter on the inside of my right forearm, about an inch away from my elbow crease. Weird. But you really expect anything less? Scheduled to be excised surgically May 17th. Big whup. Not that I don't have a healthy respect for the beast, but I know that it just recently appeared so it hasn't had enough time to do real damage.
So let me back up some though, as I missed reporting on my skeletal survey of a couple months ago. All in all my bones have recovered relatively well after all of the Zometa they've pumped into me. Zometa is a chemo drug that helps bones retain calcium. The problem is, it can also cause the bones to become brittle, and kidney problems, and your teeth to fall apart for no particular reason...but your bones are better. No signs of cancer eating through the bones, like before. Now this part was interesting, if not down right funny. The report talked about "Scattered mottled osteopenia of the inside of the skull." In other words, the inside of my brain looked like the outside of an Idaho potato. All lumpy and bumpy. When Dr. Malone recited that to me I told him that it probably wasn't from the cancer. I was born in Idaho Falls, Idaho, so if the outside of my skull wasn't shaped like a potato, the inside had to be. He just cautioned me about head impacts, as some parts/spots of my skull are quite a bit thinner than others. See! I told you I'm not ALL that dense.
This Weds. I make the trip up to SF for visits with my cadre of UCSF docs. I'm expecting Dr. Wolf to support me in my scheme to delay chemo until I REALLY need it. I'm talking infusion, possible hospitalization, need it. After nearly a year of no daily chemo, with just regular Zometa infusions, I'm beginning to feel less nauseated, headachey, and generally lousy. I can work a little longer without making my head feel like it wants to explode. I only have to get up 3 or 4 times a night, and get longer bouts of sleep between cramps and nausea. I mean really. Who'd what to give all THAT up? So I'm hoping for the best and putting my faith in Him who's gotten me this far. Come what may, it's always an interesting ride.
'Back in the summer of '99 (spoken like a old grandfather) I had a melanoma tumor in my right shoulder blade area and they took out a chunk about the size of a woman's fist" (make the gesture of a fist). "Plus another one about the size of a large ball bearing 6 months later, then another smaller one the size of a marble 1 year after that. Then, nothing but pre-cancers for years."
Then, in '09 it was MULTIPLE MYELOMA. Not only that, but of the 3 types, IgA, IgG, I get... you guessed it, IgM! myeloma. Apparently I'm so uncreative with my cancers that I can't get past the "M" ones.
So Dr. Wolf's been prepping me for the possibility of "other related cancers" since we started the daily chemo in May of '10. Bladder, liver, kidney, pancreatic were all possibilities.
So last week I go to have my usual pre-cancers removed and guess what. Biopsy. Positive for ...yep, I'm so uncreative when it comes to cancer that I just can't seem to shake the "M" kinds. A small melanoma the size of a quarter on the inside of my right forearm, about an inch away from my elbow crease. Weird. But you really expect anything less? Scheduled to be excised surgically May 17th. Big whup. Not that I don't have a healthy respect for the beast, but I know that it just recently appeared so it hasn't had enough time to do real damage.
So let me back up some though, as I missed reporting on my skeletal survey of a couple months ago. All in all my bones have recovered relatively well after all of the Zometa they've pumped into me. Zometa is a chemo drug that helps bones retain calcium. The problem is, it can also cause the bones to become brittle, and kidney problems, and your teeth to fall apart for no particular reason...but your bones are better. No signs of cancer eating through the bones, like before. Now this part was interesting, if not down right funny. The report talked about "Scattered mottled osteopenia of the inside of the skull." In other words, the inside of my brain looked like the outside of an Idaho potato. All lumpy and bumpy. When Dr. Malone recited that to me I told him that it probably wasn't from the cancer. I was born in Idaho Falls, Idaho, so if the outside of my skull wasn't shaped like a potato, the inside had to be. He just cautioned me about head impacts, as some parts/spots of my skull are quite a bit thinner than others. See! I told you I'm not ALL that dense.
This Weds. I make the trip up to SF for visits with my cadre of UCSF docs. I'm expecting Dr. Wolf to support me in my scheme to delay chemo until I REALLY need it. I'm talking infusion, possible hospitalization, need it. After nearly a year of no daily chemo, with just regular Zometa infusions, I'm beginning to feel less nauseated, headachey, and generally lousy. I can work a little longer without making my head feel like it wants to explode. I only have to get up 3 or 4 times a night, and get longer bouts of sleep between cramps and nausea. I mean really. Who'd what to give all THAT up? So I'm hoping for the best and putting my faith in Him who's gotten me this far. Come what may, it's always an interesting ride.
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