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.