YA LEARN SOMETHIN' NEW EVERY... VISIT

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.

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.

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

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.

"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.

3YRS & COUNTING!

     May 2, 2010 was an important date for me.  My real birthday was Feb 26th.  59 yrs old and more alive than many still believe (or possibly would like).  But to me, March 2nd is a more important date.  In March 2nds, I'm 3.  That's my 2nd birthday.  That's the date of my bone marrow/stem cell transplant at UCSF (can I consider it my alma mater with a degree in "practical medicine") that really brought me back to life.
     So, there I was, Sat morning, March 2nd not feeling very well but in fact remembering what day it was when Dale knocked on my bedroom door with an offer to make breakfast.  That's not so momentous, as she does that not infrequently. I just replied, "No thanks. I'm not feeling well so I think I'll just lay in bed and read a little" (The March Madness Sports Illustrated special issue.  Riveting).  A few minutes later another knock on the door...then it slowly opens..."Are you sure you don't want anything?"  I was reading & not really paying too much attention .  Casual disinterested glance, then BOING, neck snapping double take.  IT WAS HILLARY!  She had driven up the night before to celebrate my birthdays and somehow got in without me hearing her.  I don't sleep to well, and I did hear a door squeak a little but just figured it was a breeze.  What a wonderful surprise they all pulled on me.  Candice, Darrell, Dale, maybe even some of you knew, but never let on.  I'm slipping.  We had a great time together Sat with the whole fam damily, with the evening ending in my personal favorite, bbq pork ribs, and lots of them, and something else, and other things too.  Thank you to the Fam.  It was a great day.  I'm 3 by the way.  Did I mention that?  Dale made a cake.  Yellow with dark chocolate creme frosting.  Great.  A client had baked me some toll house and M&M cookies.  But the best.  The greatest (sorry Dale), was that Tani Blackwell, my friend for life and wife of Michael Blackwell the Physicians Assistant that diagnosed me & gave me my first priesthood blessing, brought me a HUGE pan, double deep no less, of my favorite food in my entire dessert group classification (which has been known to breach the breakfast, lunch, dinner, snack, cheating and hors d'ovre classifications as well). Home made, to die for LEMON BARS.  Someday Tani, I hope my wife can save your life.  But until that time...keep those lemon bars coming.  Wistful sigh.
     So, my checkup with Dr Malone in San Luis Obispo on Monday was momentous.  I brought a huge bag of candy (As fresh as Walmart can supply & not left over from Halloween as SOME people claimed).  Snickers, Twix, regular M&Ms and peanut M&Ms, again fitting in 3 of the 5 primary dessert groups and satisfying all but 1 man in the entire office, waiting room & infusion center.  So here's the poop as they say (which has particular meaning to chemo patients).
     I am getting a full skeletal survey, plus x-rays on my right hip on Fri at 1pm in SLO.  Looking to see if the IgM myeloma fairy left any masses that have eaten through my bones yet.  Particularly the already compromised bones, hip (previous mass),  ribs (previous masses), vertebra, shoulder blades (holes the size of dimes), etc.  I'll let you know how it goes. 
     3 years post transplant is the average time frame when the cancer comes back, but it's hardly exact science and like the good Drs say, "When have YOU ever been 'normal' with this cancer.  You're my special patient".  The signs say it's getting closer, but, Dr Malone feels like it's not time yet.  We'll see what Dr Wolf says when he sees the labs this week. Dr M pointed out that sometimes, the  signs go up, but then even out for a while.  So we'll see.  When I know, you'll know...ish.  You know how bad I am at this.  But I'm getting to it just 2 days after my visit.  I think that may be a new record for me.
     I'm already looking forward to my May 2, 3 UCSF appointments.  So far labs, Dr Wolf, Dr Burch (orthopedic surgeon), Dr Henry (pain management) with possibles with pulmonary, neurologist, kidney & liver docs if the numbers go up any more.  What's one (or seven) more miracle after the thousand I've already received, right?
     Please remember in your prayers our friends Shauna Sorenson (who is fighting breast cancer), Lundy Smith (who received a donor bone marrow transplant for leukemia 2 weeks ago), Mark Farish (who was cleared of his throat cancer but is still having terrible pain from lesions in his throat), and another young lady, Evelynne Griffith (who just started her 1st chemo treatments for breast cancer last week).  I know there's a lot of them out there, but I also know how prayers are delivered in times of need and they are strengthening.
     Thanks for listening.  You've been a good crowd.  And family.  And friends.  Buried another friend, and a friend's father last week.  Not going to talk about it.  Maybe later.  Cancer.  Cancer sucks.

Decisions, Decisions

I have to apologize for the longer than normal delay in my getting around to making this post after my last visit to UCSF in January. With your full understanding that I've never been one to make a long story short, let me try my feeble attempt to make a short story short.

So what would you do if you were in my position?  I'd appreciate your opinions and input on this matter.  If you've read the blog you know pretty much all that's gone on with the cancer thing. I've been off the daily chemo for 8 months now.  The side effects have subsided to some degree.  The good news is that my kidney function took a big jump in the last 2 months and has improved about as much as it ever will.  My liver is improving as well, but more slowly.  Intestinal tract not improving much at all.  6-7 nausea trips to the bathroom is a good day.  8-12 a normal one.  12+ a bad one.  But, I don't expect it to be worse if I go back on the daily chemo.  The neuropathy and chemo brain have also not improved, but I was told that it likely wouldn't BEGIN to improve until I'm off the chemo for at least a year. I couldn't begin to describe all of the side effects but they would all be effected.  The blood work indicates that the cancer COULD come back, perhaps in a big way like the first time, at any time, perhaps not.  Because I've lived longer than expected anyway, we're in uncharted waters here. 

Here's the dilemma... do I go back onto the "new and hopefully improved with possibly less drastic side effects" daily chemo in hope of  keeping the cancer from going metastatic (or as Dale calls it, "ballistic") again; or do we continue to wait it out hoping that the cancer doesn't go ballistic for a while, but which would likely require pounding it into submission with the big infusions to get it under control, then doing the daily chemo?

Some people have been able to go years without chemo and without it coming back.  Because of the nature of mine, the Drs. don't think that's the case for me, but they admit that they don't know because I'm the only one who's had it as bad as I did and survived. 

So...I know how I'm leaning.  I'd like to hear what you think.  Thank you for your continued love and support.

Saying Goodbye to My Friends

I don't know if you have found yourself in the position that I have over the past year and a half, but I have now lost 5 very good and important friends in that time, and all to cancer.  No two of us had the same type of cancer.  We all had some similar cancer experiences, and we all received great blessings and even miracles.  We were bound together by faith in God and His son, Jesus Christ, though not all of the same religion.  They have all been inspirations to me, and I would like to share a little about each one with you.

Ron Hogeland passed a year ago March 8th after battles with lymphoma, then melanoma.  He was a very good man and friend, and I was honored that I was asked to speak at his memorial service about him.  When I was very ill and up at UCSF, Ron met Dale in the hallway at church and told her that he had the feeling that I would outlive him. He had just finished very successful treatments for his lymphoma, and he was cured.  1 year later they discovered lesions on his liver which turned out to be melanoma that had metastasized from his eye of all places.  It wasn't long before he was gone.  He was ready to go.  He didn't want to fight it again, he said.  A year after my bone marrow/stem cell transplant he was gone.  He had just celebrated his 67th birthday the month before his passing.

Many will remember my requests for prayers on behalf of Ken Schmutz.  Ken had been the band leader for the High School and Middle Schools in our town for many years.  He was exceptional, and his bands were too.  He had cancer for several years.  Tumors that would grow in his abdomen.  He needed a ride to Stanford for his surgery.  I had an appointment at UCSF, just up the road, the day before, so I talked him into spending the day with me and then I'd take him to his check-in at 5:30 am.  He went to my appointment and was very impressed by the whole UCSF experience, and especially Dr. Wolf.  Ken thought our relationship was special.  He'd heard me talk about it, but didn't really believe it, until he saw it for himself.  After my appointment we went to the Embarcadero and saw the sights and had a hot fudge sundae at Ghiradelli Square.  We met his son, Kenny, who was interning in Sunnyvale, for dinner at Benihana's and had a great dinner.  We stopped and looked at the new McLaren on the way to our hotel.  We talked all night. His surgery went well.  It was his 5th surgery in 11 years, if I remember right.  He was recovering well, but a wek later, while standing at the sink in his room, he collapsed.  An artery in his abdomen had ruptured.  He was likely dead before he hit to floor.  Ken had just celebrated his 63rd birthday the month before.

My friend Allan Kreamer passed September 29, 2012.  I heard that he was dying of bladder cancer 2 years earlier, and went to visit him with another friend and a member of our Stake Presidency, Kim Kunz.  I had been told by some who had been to the hospital that I'd better see him quickly if I wanted to see him before he passed.  As we entered we met Elaine, Allan's wife, who was a basket case.  I checked his machines, got the rundown, and boldly proclaimed: "I've seen worse".  I told Elaine that I thought that Allan would recover.  Then Pres. Kunz and I gave him, and her, a blessing.  He recovered quickly and it was not very much longer before he, Larry Boice and I were golfing together, and he regularly out drove us!  About a year later he complained of a pain in his back.  Tests showed that it was cancer in his spine and that it was untreatable.  Al struggled with this new development.  Once he found some purpose to the rest of his life, he accepted his fate and lived well until his passing.  Al was 70 when he passed.

Harvey White was just a great guy.  From my first experiences with him I new that he was MY kind of guy.  I'll illustrate.  I was planning on going to the Saturday night session of our church's semi-annual Stake Conference.  This was just 3 1/2 months after my transplant, but I thought I was doing well.  Harvey called a couple nights before and asked, "I've heard that you've changed a lot from the cancer.  How will I recognize you"?  I told him that he should look for the 70 year old man and that's me.  After the meeting he stood in front of me and didn't say a word.  He surveyed me up and down then exclaimed, "I've got news for you Kev, you don't look 70.  I'm 70, and you don't look as good as I do.  You look like MY FATHER"!  We both just busted up laughing.  Harvey had stomach cancer that they thought they had under control until they were going to do surgery to remove the shrunken tumor.  They discovered that the cancer had spread to other organs.  He chose not to end treatments.  He passed on the morning of Thanksgiving.  I know that there was a BIG excited family Thanksgiving gathering in heaven, just like the one planned here.  It was my privilege to speak at his memorial service as well.  Harvey was 73 when he passed away.

Tonight I learned that my friend, Dennis Lozano, passed away yesterday morning in his beloved Alaska.  I don't know how old he was, but I'd guess mid 60s?  We were roomies at UCSF, which was extremely uncommon but such a blessing to me. Dennis was not eligible for a transplant.  His numbers were not good enough and he would not survive the procedure.  So they were sending him home to die.  Dennis witnessed one of my priesthood blessings, and we talked about them  and the personal requirements for healings over the next couple of days.  Then he asked if I could give him a blessing. I did, and he was promised that he would live long enough to re-connect with his children and family if he would be faithful, attend church, and say his prayers.  He returned to Alaska. When he hadn't died after 6 months they asked him back for more studies.  Then to Stanford for a study.  Then to the Mayo Clinic.  Then, recently, back to Stanford.  The drugs weren't working.  His situation was deteriorating quickly.  But through it all we kept in touch, and he expressed gratitude for the time he had enjoyed with his family and friends.  They thought he'd only lasy 6 months or less.  He lasted over 3 years!  What a blessing.  I don't know how old he is, but I know he's not much older than I am, nor any of the others.

The purpose of my sharing this with you?  First, the fact that every one of us, Ron, Ken, Allan, Harvey, Dennis and I thought that at one time we had cancer licked before it reared it's ugly head, again, and claimed another victim.  There have been many wonderful miracles in the study of and treatment for cancers of all types, but there is obviously much more to do.  Second, do not wait for that time or situation to decide what should be really important in your life.  The Holy Spirit, scriptures and prayer, as well as a listening heart, will let you know what you need to do to enrich your life, and the lives of others.  Third, if you have a friend who is ill, please do not stay away because you "Don't know what to say to them".  I promise that if you will go and visit, you will either know what to say, or better yet, let them do the talking.  Sometimes all they need is someone to listen to them.  To confide in.  It has been a deeply rewarding experience for me since my recovery.  Fourth, I could very easily be next, so I think you should all send me things.  Golf packages.  Trips. Or just a visit.  Thank you for listening to me.  My soul grieves for my losses.  My soul rejoices for their gains.

I have many more friends suffering, battling right now.  I pray for many more miracles and that the anguish of their souls may be replaced by the peace that comes from only one source.  The true source.  Our Heavenly Father and His Son, Jesus Christ, whom we honor at this time of year.  I know what I want for Christmas.

Make this Christmas season your most memorable yet.

2 FER MONDAY

I'm hoping that everyone out there in blog land had a wonderful Thanksgiving, like we did.Our nephew Josh, his wife Tara and their 7 (that is not a misprint) great children came to visit.  Also Dale's brother Rick and his fabulous friend Nancy came as well and really took care of Grammy so Dale could better enjoy the company and holiday.  Also, it was Rick's 65th birthday on Friday, as well as Jake's 13th, Josh & Tara's oldest child.  Unfortunately, we all learned that some of Josh and Tara's children, including Jake and the 3 month old Seth, have bad allergic reactions from the cats.  Dale has 3.  So they had to pack it up a day and a half early to head back home to San Marcos Friday morning.  Well, it was fun while it lasted.  They'll never be back.

The title of the Post reflects my 2, count 'em 2, doctors appointments last Monday.  10 am with Dr. Charles Fishman my long time dermatologist.  Long story short, 10 "pre-cancers" frozen off, and 1 biopsy of a spot on the bottom of my right foot.  I had about 15 minutes to get to my appointment with Dr. Malone when Dr. Fishman decided to do the biopsy.  He said, "I'll have to numb it up because I'm going to take a punch about 1/2" deep and I know the bottom of feet are very tender and sensitive, and that takes a few minutes."  I told him that I still have pretty bad neuropathy all over, including my feet, so I was sure he wouldn't need to numb it first.  He showed me the punch.  I said, "Let's give it a try", and so he did.  Without incident.  He took the biopsy and said, going out the door: "I guess the neuropathy can come in handy some times. Call me on Weds. for the results."  I had had some really ugly nasty scabs from freezing the pre-cancers on my face.  I could have used those 3 weeks ago for Halloween.  Memo to self: Get dermatologist appointment 3-4 days BEFORE Halloween next year.  Great head start on a zombie/leper/dead guy.

It's hard to believe but I've been off of the daily cancer chemo for 6 months.  The labs were pretty good.  The cancer numbers are good and it still hasn't become metastatic.  Right now the effects of stress are the primary source of side effects due to my body being beat up so badly by the nearly 3 years of daily chemo.  Neuropathy still pretty bad, but it's really not too bad to live with (see paragraph above).  The chemo brain is no better and may be worse.  I've been told that it usually starts to improve after being off of the chemo for a year or so.  Let's hope.  I'm always messing up something at work, and I can't even work that much, which makes it even  worse!  I have very patient clients and helpers.  Thank you all.  Liver and kidney functions are up a wee bit, but up is up.  Thank you Dr. Tulanian and all of your help and supplements!  I'm still getting the chemo infusion of Zometa, which is for the rebuilding of my bones.  When I was doing the daily chemo and the monthly Zometa infusions, I really didn't feel any significant side effects.  Now, without the daily chemo, and with my body apparently feeling better more often, the flu like symptoms that are the common side effect are more prominent and last about 3 days, starting the day after the infusion.  So I can tell by this experience that my body really is feeling better, and I expect it all to improve until it all starts over again.  AND, I only have to see the Drs. every 2 months now, instead of monthly.  I'm gonna miss them.  They've become such a big part of my life/living.

So the clock keeps on ticking.  I'm 3 years and 3 months removed from my initial diagnosis.  The rollercoaster ride has been actually quite interesting, uplifting, and dare I say fun?  The better days are a little more frequent.  The bad days aren't quite as long lasting and the depth is much more bearable.

I also want to let you know that my friend Dennis Lozano is currently having a very hard time and is not doing well.  After over 3 years of miracles, it seems that the time that he was given to reconnect with his family is close to being up. Please remember Dennis and his wife Marie and family in your prayers.

So there you go.  2 FER MONDAY and I'm doing well.  Had a great Thanksgiving.  Hardly was unwell at all, and am really looking forward to this next Christmas season.  I've gotten to know Him so much more than before my cancer.  I feel more confident in knowing what to get Him for His birthday now.  Happy holidays and merry Christmas to you all.  God bless you at this truly special time of year.

FINALLY!

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.

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.

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.

SHORT UPDATE

First, I have to clarify from my last post, in which I stated that it has been 28 months since my diagnosis.  CHEMOBRAIN.  Some followers of the blog pointed out that it had been 32 months since my diagnosis in Aug. 2009, with the accompanying 32 months of chemo and other drugs and treatments.  Apparently to me it only seems like 28 months.  And for those sticklers, it's been 33 1/2 months from now.

I reviewed my latest labs with Dr. Malone yesterday.  After my numbers and condition had declined so much over the past months, it was GREAT to see that many of the lab indicators showed some improvement in many areas.  Not huge improvement, because it's only been 3 weeks since I stopped the daily chemo, but improvements that indicate my internal organs that were going down hill fast are responding favorably and improving.  We're happy and excited.

It has also been interesting to see how even though the chemo is truly poisoning my cancer into submission, my body has been going through withdrawals as it is getting out of my body and system.  I have much more empathy for those that suffer from addictions and go through the withdrawal process.  Mine is likely just a fraction of the reaction of those that have long term use addictions.  So to you out there, in a small way I have shared your pain and understand better.

Now the wait for the return of "Jaws".  We're hoping for never, but it's likely going to happen.  There are new and improved drugs coming out in the next year which should treat the cancer as well as the Revlimid has, but with lesser side effects.  So even if the cancer comes back, hopefully, it will be a better experience for me next time.

Thanks again for all of your love and support.  We truly appreciate it and can't wait to greet and thank each of you in the future.

THE END OF THE BEGINNING

So here's the short story, for which I've never really been known, but let's see how this goes.

In my last meeting with Dr. Wolf he told me that he wasn't comfortable taking me off of the daily chemo due to "Jaws", my cancer.  Well, since then my internal organs have gone steadily downhill.  Fri. was the 2 year anniversary of my taking the daily chemo and all that goes with it.  Both Dr. Malone, my local oncologist, and Dr. Wolf are quite surprised that I lasted this long.  Most people take the Revlamid 2 weeks on then 2 weeks off, or 3 weeks on then 1 week off.  That allows the chemo to just get out of the body before you start all over again.  So my body has endured about 4 years worth of treatment, in 2 years.  No wonder my guts are going downhill, huh?

 Let me back up a little. After my visit with Dr. Malone the end of April, Dr. Malone offered to talk to Dr. Wolf and let him know where I was at.  Dr. Malone always sends the labs for review, but he felt he needed contact. They talked, Dr. Wolf and I talked.  They talked again. Then at 6:59 am on Mother's Day morning (yes, my great doctor doesn't take a day off unless you take him away from it on purpose) I got a text message from Dr. Wolf saying, "Go off the Rev until you get here."

So Dr. Wolf spends 5 minutes hemming and hawing about whether or not to take me off before I interrupt and ask him was his "gut" feeling was.  I told him that me and my family pray for him every morning and night that the Lord will inspire him to know what to do for my care.  I told him that between the Lord and him, they've done a great job for 28 months and I expect him to keep doing a great job of it.  His eyebrows raised some.  He sat back in his chair and thought for what seemed like 10-15 seconds and declared, "I'm taking you off of the Rev[lamid]."  I told him that I was comfortable with the decision and we both relaxed.

I'll still be getting blood tests once a month to check up on the cancer and other related things.  Next meeting with Dr. Wolf, 4 months!  That is unless something comes up in the labs.  So I'm excited.

I'm really looking forward to not having the side effects.   They are starting to subside.  I actually slept from 11 to 6, STRAIGHT THRU!  Usually I have to get up 2-4 times due to nausea.  This is going to be so good.

So, there you go.  That's it for now.  I'll keep you up to date when something comes up.  Thanks for sticking with us and all of your support.  It's been over 28 months since my diagnosis.  Wow.  Going for 48.

Love.  Kevin

MY CANCER HAS A "NICKNAME"

     I'm sorry but I've owed any of you who are still logging on an update for a few weeks.  I've had a less than great couple of weeks since my last visit to UCSF. 
     Dr. Burch, the orthopedic surgeon says that I'm about as good as I'm gonna get.  So they tally is 7 collapsed vertebra, BUT with 3 repaired as well as they could with kyphoplasty, I'm doing well, "considering".  That seems to be the catch phrase for all of my UCSF doctors.
     Dr. Henry, my pain management doc said that the ablation is doing what it should, blocking the pain signals for 3 of the 7 collapsed vertebra.  I asked about the other four and she said that they didn't want me to be pain free because they found that people they fixed really well felt better than they should have and did things that caused worse problems than they originally had.  As I tried to explain how my level of pain is pretty high after just a short time sitting, standing or working out, she smiled and said that she was "Ok with that".  She doesn't even know me, but still doesn't trust me.  I'm hurt.
     Dr. Wolf, though, was the highlight.  As I have shared several times previously, he has dangled the "I might consider taking you off of your chemo to let your internal organs try and recover from all of the damage" carrot in front of me.  So I asked about it.  He very thoughtfully looked at the file and calmly said: "I have looked at everything in your file and records.  I've talked about you with Drs. from all over the world during the international myeloma conference in February.  Kevin, your cancer is like "Jaws".  He may be deep.  He may be shallow, but we know he's there.  If you dangle a leg out there for him, he's going to attack it and drag you under. I just can't take you off of your chemo."  He went on to explain that at least with my internal organs going downhill the way they are, we have numbers and time we can work with.  If he took me off the chemo, I would need to get blood tests every week, but even then that may be too much time.  If it metastized again it would kill me. My internal organs are too weak to be able to survive another series of treatments.  SO, we stay the course, and I'm OK with that.
     The good news is that the chemo is still working at killing the cancer before it can spread.  The side effects just remind me that I'm still alive and have at least some of all of my faculties.
     Weds. is another appointment with Dr. Malone is SLO.  He'll like the Jaws analogy.  I want to see his reaction.  Just keep those infusions coming...
     Hoping that all of you are doing well and that I'm the worst off person you know.  Let's just try and keep it in my family, and out of yours. OK?

OH! My ACHIN' BACK

For those that have been following this for longer than a month you will remember that I've been whining about the pain in my back from the collapsed vertebra.  About 4 months ago I did go up to UCSF's Pain Management clinic and received some injections which did work to temporarily relieve the pain.  Now came the good part.  The actual, bonafide, longer term shot (no pun intended) at relief called radio frequency ablation.  It's a procedure where they stick some electrical devices into your back around your spine and zap the offending nerves that are sending the pain signals to my brain (sometimes it takes weeks to get there but it does eventually get there) with ultra high frequency radio waves which strip the nerves of the mylin (sp?) sheath which is the medium sending the pain signal.  Every body got that?  I think that's how it goes anyway.  Jeff Jones, if you haven't given up on my blog site, maybe you could share some of your infinite wisdom about this if I'm off base.  The relief, instead of being for just a few weeks, is supposed to be for 6 months to a year.  And because I know that you are all holding your breaths in anticipation of the outcome, we will now break for a commercial from our sponsor...

My friend Wes Castro accompanied me again on this trip and he is really great company.  Thanks again Wes.  We always leave early enough to give us some room in case of traffic.  On Feb. 6th, no traffic.  Keeping it at a reasonable 5 over, we got to SF in 3 hours.  We had an hour to kill, so we went to Fisherman's Wharf so Wes could have some lunch and eat it in front of me.  They told me not to eat or drink for 6 hours before the procedure.  That was in case they needed to do general anesthesia.  More about that later.  So I'm going to give you some pictures from around FW first.  It was a beautiful day, by the way.

So walking around Fisherman's Wharf we of course saw many interesting people, and a whole lot of tourists.
We found a nice little Japanese sushi restaurant.  Wes ate a big seafood noodle bowl right in front of me.  I can't show it because it was too pain for me to just sit there and watch him eat it.  But it looked great.

Now for the fun and games.  First off I'm going to show you nurse Nancy.  She assisted in the first procedure of shots.  She's got a serious problem. She apparently likes looking at old guy buns.  Sicko.  She tells me to climb up on the table and instructs me to drop my pants and shorts.  So I'm lying there for a minute before the Drs. come in and say, "The procedure's in his lower thorasic and uppermost lumber vertebra.  His pants won't get in the way." "Oops".  Get a good look at her so she doesn't get away with that if you're ever there.

The machine that she's behind is the Frankenstein Machine.  A lot of electrical juice goes through that.

                              OK, here we go.  Now for the procedure run down.  Ready, set, zap!
I asked if they could get permission from the UCSF legal department to take pictures while the procedure going on.  With the needles and things IN my back. No go.  So we'll work around it as best we can.
Here's Dr. Naidu ready to go.  The pictures on the screen are not me.  Don't you just LOVE his prom dress.  That bright green just really just brought out the color of his eyes.  Dr. Naidu graduated from the U of Wisconsin at Madison, got his MD there, did his residency at UCLA, now doing his fellowship at UCSF.  Great guy.

      Here's the package of death and destruction to the demon nerves. Looks pretty impressive doesn't it?        They only did three of the seven collapsed vertebra as the 3 have been the worst offenders. 

So first they wheel a portable CAT-Scan machine that's shaped like a half circle to bring my vertebra up on the screen.  From those pictures they locate the nerve that comes out of the spine and wraps around to the back of the spine where they get pinched by the facets. So the object is to zap the nerve before it gets to where it gets pinched so no pain signal gets sent to the brain.  

 Above is the picture of the what the needles look like outside of the sterile pack and after they had been inserted into my back and the offending nerves.  The whole set up to the actual ablation took just over an hour and a half.  Here's how it goes...First they do numb the area of the spine where they're going to insert the needles.  They actually put a tube into the area of the targeted nerve because the needles, as you can see, are not stiff enough to be injected through the skin and into the nerve.  Plus, the tube hole directs the needles for the deadening injection just before the actual procedure.   Here's a picture of the tubes. They are about the size of the opening on the point of a ball point pen.  Not too large.  Not too small.  But just right. Ya, right.

 Next is the picture of the needles in my spine. This picture below shows two of the three needles that went into the spinal nerves.  Charlotte, the 3rd year resident, couldn't take a picture of the needles in my back, but I convinced them all that she could take a picture of the picture of the needles in the back without breaking the rules. We just sort of bent them a little.  By the way, her prom gown was a classic black and looked very good on her as you can see in the picture below.

The dark spots inside the vertebra show the kyphoplasty procedure that Dr. Burch did way back when. 

 

 So here's how the whole thing goes... After they deaden the area and stick the needles in their fun begins.  First they ask you to let them know when you feel the spot get "warm"  This is how they figure out that they're in the right area of the nerve they are targeting.  Then they turn up the juice and, well, it's not like having someone put your hand in a bucket of warm water while you sleep, but it is an interesting sensation. From how much juice they have to turn the machine up to they can tell if they're near or at the right spot.  So they move the needles in or out to find the "sweet spot" on the nerve.  Times three.  Then they change the zap-o-meter to a different setting.  This time the sensation is an electronic pulse. Kind of a junior taser.  My left leg would really jump.  That was a good sign for them. It kinda of feels like the throbbing of a thumb that gets hit by a hammer.  Times three.  Of course they have to move the needles in and out to find the "sweet spot" here too.  Then, when they have the right spots figured out they pull out the probes and stick in a needle with the magic juice to deaden the nerves.  Wait 2 minutes for it to take affect.  Then, they stick the actual ablation thingy down the hole, crank up the juice on the machine, and it's over.  The ablation takes less than 30 seconds each and it's over.  Kind of anti-climatic.

In and out in less than 2 hours.  Had a great visit with Dr. Naidu.  Dr. Melanie Henry, the big boss, slipped in and out without getting her picture taken.  Either that or she was in a hurry to get back to the tollhouse pan cookies Dale made for them.

There you go.  It took a week before the pain in my back from the procedure subsided enough to let me know that the pain in my back wasn't so bad.  2 weeks and the pain was mostly gone and the back pain is much less.  It makes the end of each day so much more enjoyable without the throbbing pain in my back.  Thank you to all of the Drs. and staff that did that made that possible for me.

Wes drove home and stopped in Gilroy at Applebees and had a rack of ribs each.  Oh yea.  Because I DIDN'T need any general anesthesia, I could have eaten up to the time of the procedure! So I made up for the lack of breakfast and lunch with the ribs and mashed potatoes.  Ta ta for now.  Thanks for everything.