Engaged in a Good Cause

This was my first year being involved with the American Cancer Society Relay for Life here in Paso.  My son Darrell and a couple of young ladies from our Ward, Tara and Rebecca Pechon, made up my 'team'.  The financial support came from a client who wanted her estate to go to 3 different charities, Am. Cancer Society, Am. Diabetes Assn, and the Alzheimer Assn,  for awareness and research.  One for each of her husbands and her son that predeceased her.  I'm wearing my purple survivors shirt.  Fortunately there were many of us.  Several were multiple survivors too.  One couple that I walked with were particularly inspiring.  He had just been deemed cancer free and in remission about a month ago, and she was diagnosed with breast cancer 2 weeks ago. Wow.

There were more people there than I expected.  Opening ceremony was at 9am Sat.  Closing was at 9 am Sun.  Though I couldn't stay, many stayed all day and all night.  Many groups had booths with various items to sell to raise money, and others just had lemonade or cookies or other treats for those that participated.  On Sat. morning, before the opening ceremony, they had a breakfast for the survivors.  All of the food donated.  For dinner Sat. night, a chicken bbq with beans, bread and various drinks for any and all participants.  Anyone who walked, or even raised a dollar, was welcome to eat and visit.  I believe they fed about 2k meals, according to the bbq crew, though around 4k participated throughout the 24 hrs.  It was a beautiful day and setting.

 There were about 250 for the 1st lap, which as you can see, is all purple survivor shirts.  I'm in the back, with the purple shirt.  There were several children in the group, which reminded me of my 9 yr. old great nephew Spencer, who just got the all clear from his rhabdomyosarcoma.  There were a few young adult that reminded me of my niece Becky, who recently got the all clear on her non-Hodgkins lymphoma.  It was a wonderful experience to see so many in the community involved in this cause.  It also gave me a opportunity to personally thank many people in the community that donated to my cause and sent many cards, notes, and well wishes my way.  I was too tired to stay for the luminaria lighting at 8.  They are lit to light the way around the track for those that walk at night.  They are dedicated to those that have not been as fortunate as those in the purple shirts.  I dedicated my walk, and luminaria, to my father, nephew Steven, friends Ron Hogeland, Frank Connolly, and Roger Poulton, and my doctors who continue to care, and to all of you, whose prayers and faith have brought me another birthday and opportunity to serve God's children.

      

 

MY SPINE IS IN THEIR HANDS & GOODBYE VIETNAMESE BEAUTY

 I had to apologize to the staff and doctors last

 Thursday and Friday, who performed the kyphoplasty on 3 of my 7 collapsed vertebra, have monitored my progress with my physical therapy, performed many x-rays, etc.  I had talked about them, but not put their pictures on the blog.  Here they are in all their glory.  I will let you guess which one of them was pleased with the proposition, and which 2 weren't.  This lovely and kind lady is Marilyn.  She runs the office, schedules surgeries, schedules his many professional presentations he is asked to make around the country, schedules x-rays, C-spans and MRIs, is the greeter and works just for Dr. Shane Burch, my orthopedic surgeon.  She also coordinates my appointments with Dr. Wolf's office, so that I can do everything that each of them want, without ruining the schedule of the other.  Wonderful wonder woman.  She is just a joy to deal with.  When was the last time your doctor's office asked, "When would it be convenient for you, and what other doctors are you seeing so that I can make sure it all works."  She used to work with Dr. Wolf's office.  Less stress here.

 This cute young doctor, yes she is a full fledged Dr, is Samantha Piper.  She is Dr. Burch's minion and wants to be a nationally recognized leader in cutting edge (a little play on words there in case you missed it) spinal surgery like he is.  She spent a few minutes with me getting all of the latest info. on my condition, reviewing the survey of information that they have me put into the computer each visit, and doing some physical tests.  She is a little less peeved than Marilyn about having her picture taken, and a little better of a sport about it.  She has eyes and uses them during surgery

 This dashingly handsome man is none other than THE Dr. Shane Burch, MD, and a lot of other letters after that.  Today he was in particularly good form.  He had a recent haircut, had shaved (1st time I had seen him without his 2-3 day growth), and had on a pink shirt with a small pattern and a pink and purple checked tie.  He looked like a GC model and has a great bedside manner to boot.  He is an avid outdoorsman and he hopes to get me backpacking again. We talked backpacking.  He was surprised at all the places I'd been.  He lives in Marin, about 35 miles from the hospital over the Golden Gate bridge.  Marilyn told me that when the weather is willing (not raining), he rides his bicycle to and from work.  Even when he has 7am surgeries.  He smiles a lot, yet has no bugs in his teeth that I could see.  
His report to me was: 1) He was very pleased with the progress that physical therapy has made.  I didn't have to get a bone density scan because you could see in the comparison X-rays of when I had my surgery on November 20, 2009 and now, that my vertebra are much stronger and denser.  He also showed me and was very pleased that my spine is much straighter than it was when I started the physical therapy.  He also gave me a referral to receive injections in the area of my T-9 through L-2 vertebra, to verify his belief that it is the facets on the back of my vertebra that are rubbing and causing my spinal pain.  If the injections bring some relief, then we know.  Then, he will authorize me getting radio frequency oblation treatments on the nerves in those areas.  Basically, they obliterate the nerves and kill them, which in turn kills the pain.  I will still have the back problems from the collapsed vertebra, but, I won't have the pain associated with it.  THEN, I should be able to return to some short term (3-4 day) backpack trips and other physical activities.  Not, however, full contact b-ball or mud football at Thanksgiving.  I'll take what he can give me.  Like Danny Glover used to say, "I'm getting too old for this stuff", anyway.         

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I want you all to know that this is the first successful one-armed picture I have taken with the camera.  I made this picture large for 2 reasons.  First, I wanted you to get the true size comparison of the Vietnamese beauty in the middle.  She wears 3" platform shoes so she can get to 5'!  This is Thuy (pronounced T-wee, said quickly).  She is, or was, Dr. Wolf's nurse practitioner.  Friday was her last day.  She is leaving us to follow her boyfriend who is in Boston.  They've been separated for a year.  I've been telling her that until he makes a bona fide marriage proposal, don't do it.  Of course that was for purely selfish reasons.  She is wonderful.  We will miss her.  Thank you Thuy for all of your kindness and care.  We wish you the best in Boston.
The other reason was to show you what an iron man Dr. Wolf is.  Does he look to you like he just got back at midnight from a 5 day world-wide symposium in Paris on multiple myeloma, of which he was one of the keynote speakers.  No jet lag for him.  He hasn't hired a replacement for Thuy yet because he's hoping she'll get to Boston and either break up with her boyfriend or hate the Boston summers and return.  I'll keep you posted.  I have an inquiring mind.  I want to know.
To get you caught up in my saga,as I have been remiss in being a faithful blogger:  I have had 3 lab reports over the last 2 months which had indicated a possible return of my cancer.  My local oncologist and Dr. Wolf weren't too worried, and I just didn't feel like it was back either.  But after the 3rd report came back with the same result, they ordered a bone marrow biopsy just to be sure.  So last Monday Dr. Malone did it.  It really doesn't hurt too much.  The worst part is after he has pushed the needle through the hip bone and begins to such the bone marrow into the needle.  That was uncomfortable.  He did notice that getting through the bone was much harder than than when he did it for the 100 day bone marrow biopsy after the stem cell transplant, which he did in the beginning of June of '10.  That was a good sign.  Then he gets a core sample.  That one is about 1/8th of an inch across and goes through the bone, through the marrow, and through the other side of the bone about 1/2 inch or so, so that the marrow is intact between the 2 layers of bone.  That one didn't hurt as much initially, but has been more painful as I sat, drove to SF for my appointment, walked, etc.  The good news is...I am still cancer free.  Now they just want to figure out why the misleading readings.  Probably the liver or kidneys.  We'll work on that next.  Also, he shared that some countries around the world that do not have as involved a pre-distribution screening (FDA) process have been using the Revlamid maintenance chemo treatments for nearly 3 years, instead of only 2 years in the US.  They reported that a significant number of patients (no percentage shared) that stayed on the Revlamid for 2 years or more have ended up getting other forms of cancer, particularly liver and kidney cancer.  Therefore, he will stop my daily Revlamid treatments after 18 months.  May 28th will be 1 year of it.  He may stop me sooner, if he gets more info. that concerns him.  However, he said that he still feels that if not for the Revlamid, my cancer would have returned by now.  And that would be bad.
So the only other thing to report is that I did get pneumonia for the 3rd time since the first of the year.  On antibiotics.  They're working.  Still coughing up stuff, but feeling much better.
Here's something that just blew me away.  At the end of this month, it will be 21 months from the time I was first diagnosed with the IgM multiple myeloma, and 14 months since my stem cell transplant.  This past weekend, 1 year ago, was the first time that I was able to go outside for something other than a doctor's appointment.  Darrell and Candice took me to the annual 'Wings and Wheels' show at our local Warbirds Museum.  They have a fantastic display of military equipment, vehicles and planes dating back to WWI and going to the present.  They also had about 400 classic cars, boats and other types of vehicles on display.  The honored guest was none other than Parnelli Jones.  I lasted about 30 minutes.  I wore my depends (TMI?) and collapsed on the couch at home with a big smile on my face.  At times it all seems like it was an eternity ago.  Other times, like yesterday.  What I will never forget, or ever stop thinking about, is how much all of you helped me through it with your prayers and love.  Our High Council speaker today spoke of how praying with a unity of purpose can bring great blessings and miracles.  I wanted to stand up and say, "Bro. Bitter, you're preaching to the choir.  I'm here because of their prayers on my behalf".  Thank you all.  I thank my Heavenly Father for you every day, and ask Him to bless you as you blessed me.  I love you all for what you've given me.  My life back.

DOME, LAMB, SCARY LABS, RED EYE and the POODLE DIED

I've seen some pretty magnificent buildings in my life.  Cathedrals, churches and castles in Europe are everywhere.  These 3 pictures are of the fabulous city hall for San Francisco.  I have more, but I won't bore you.  All rebuilt after the earthquake and fire of 1906, it's marble floors, stairs and walls are exquisite.  These photos are of just the main hall and dome.  The dome, by the way, is the 3rd largest dome in the world.  If you go to SF, you have to see it!       

 

 

This very cute young lady is the reason why I was going to the City Hall building anyway.  This is Nancy Gudino.  She is a friend from the Santa Barbara County Recorder's office.  She moved to SF to go to law school.  I know.  I know.  I tried to talk to her, but she could be a great one.  She tried to get hired at several law offices for 'practical experience'.  She moved not having a job.  At our last meeting I suggested, 'You could always try the recorder's office.'  After 2 weeks of rejections she decided to try just that.  She walked in, let them know she had 4 years experience, started the next day, and by the time I saw her a month later, she was in charge of getting the office in order for their upcoming audit.   She had me meet her at city hall so she could show it off, then took me to great mediteranean restaurant just a block away.  Her fiancee is an investigator for a federal agency.  If I told you which one, he'd have to kill me, so I won't.  

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So while I'm driving up to SF, my eye started bugging me.  'Oh great, allergies' I thought.  I pulled over and took out my contact.  By the time I met with the nurse prior to my meeting with Dr. Wolf, she looked at me and shuddered.  "How long has your eye been like that?"  'Like what?'  She said, "Look in the mirror."  I shuddered.  My eye was all red and bloodshot and full of gunkie goop.  Long story long, bacterial eye infection, which spread to my other eye by the next day.  Now go back and look at the previous picture of me and Nancy.  It doesn't look bad there.  That was just 2 hours before I saw the doctor.  He gave me a prescription for antibiotic eye drops.  Cleared both of them up in 5 days.  Funny thing, the next morning after my appointment, I tried to open my eyes, but they wouldn't.  All of the goop had gone crusty on me and glued my eyelids shut.  I had to wander into the bathroom and run warm water on them to ungunkify them so I could open them.  Fortunately, that was only for 2 days until the antibiotic started to work.

I believe that I had previously mentioned that during my previous visit Dr. Wolf had stated that he'd consider taking me off the daily chemo after a year (June) if my 'markers' remained good.  I started off my questions with, 'So how are my markers?'  "There's some possible problems.  Your IgG level is high.  Your kidney function is diminished and your liver numbers are 4 times high normal range.  I could just be an anomaly due to your 2 bouts with pneumonia and other infections since I last saw you, but we'll watch it closely over the next month."  Well that wasn't what I wanted to hear.    Then he sent me to get another round of immunizations.  8 shots.  Oh boy.  Another long story long, I got more blood tests 2 weeks later and met with my local Dr.  Still alarmingly high.  Not worse, but not better.  Cause for concern, but not panic yet.  I felt OK.  "Let's do it again in 2 more weeks, BUT, if you feel any new or different pains call me, then Dr. Wolf, then head to the ER."  No ER visits.  Blood test in 2 weeks.  Meet with Dr. Malone.  He looks at the test numbers.  Reviews them again.  "These are the best numbers you've ever had.  Everything's normal.  Better than normal. What did you do?"  I told him I had a visit with Dr. Sandy Tulanian, my chiropractor/nutritionist.  "Apparently it worked."  Thanks Dr. Sandy.  I don't think it was the fact that my friend Greg Fisher got us tickets to the Sweet 16 games at the Anaheim arena, but maybe that was it.  The chinese I had there wasn't too bad.  Just in case it was, or at least contributed, thanks Greg for a fantasticaly wonderful experience.

You can see in this picture that my eye is still red, swollen and gunkie, but that's not the point of it.  Look again... THE POODLE'S DEAD!  I walked in to get a hair cut with still curly hair.  I said, 'Cut it short', which she did.  And my hair didn't curl back up when she was done!  It was a little tentative, as it couldn't really figure out if it was supposed to be curly or straight, but it was mostly straight.  Today, it's all straight in the front and a little wavy in the back.  Darrell noticed that the pre-chemo color was coming back.  I was the "pewter poodle".  Now it's coming in dishwater blond again.  Weird, but would you expect anything else?

So now that my pneumonia(s), bacterial eye infections, inner ear infections, sinus infections and inflamed eustacian tubes are no longer an issue, I can get back to physical therapy (after a 3 month lay off), walking and some other forms of exercise which shall remain nameless because Dale hates golf, and even an increase of hours working (which Dale likes).

The miracles continue to happen, thanks to your continued prayers and good thoughts on my behalf, as well as the love of my Heavenly Father, His son Jesus Christ, and blessings.  every day I thank my Heavenly Father for you and ask Him to bless you, as He has blessed me.  Just not with all of the cancer stuff and chemo etc.  Just bless you with what you need.

HAPPY 1st 2nd BIRTHDAY!

This one will really be quick.  Yesterday was the really, actual, bonfide 1yr anniversary of my stem cell transplant at UCSF, which gave me my life back after cancer.  My 2nd birthday.  It was also the day that I had my monthly visit to my local (SLO) oncologist for my Zometa infusion and check of labs.  Thanks to Rod Blackner and his Paso Robles Culinary Academy cohorts for baking me a cake to take with me.  Chocolate cake with vanilla filing.  It was great, and everyone at the oncology center appreciated the moral victory that the day represented.  All of the many nurses that have treated and "infused" me over the past year and a half were there, especially the 2 who were in Paso when Michael Blackwell, then Dr. Bonis saved my life.  Valerie and Kristen, a special thank you.  Kristen is leaving the cancer bus. to work for an OBGYN in Templeton.  Friday is her last day, so it was doubly nice to be able to see her, thank her, and say my good byes.  For all of the miracles in my treatments, I'm guess the need for an OBGYN in the future for me is still pretty slim.  It was wonderful to go back home and climb into bed all nauseated from the infusion and nightly chemo.  I laid there just thanking the Lord for my nausea and body pains.  It reminds me every night that I am alive, and beating the cancer that tried to take me.  If you're interested, go back a year and review the miracles that surrounded my surviving the bone marrow and stem cell transplant, or the chemo that preceded them anyway.  Yesterday, one of the other patients receiving an infusion said that I was just "beaming and glowing".  I told her, and the 5 other patients receiving infusions in our treatment room, that thanks to God, my brother Jesus Christ, fantastic doctors, nurses, medicine and science, I was alive to beam.  I gave her my telephone number and told her to call me if she wanted to hear about how she could be beaming by her next treatment.  Terri, my nurse, encouraged her to call.  She said, "He always leaves here having made somebody feel better about their chances and recovery."  I can't help it.  It's a message that needs to be shared.  Have I told you about my friend, Dennis Lozano and my niece, Becky and great-nephew Spencer?  Now those are stories...

Mr. Sicky

This will be short.  I'm now on my 3rd bout with pneumonia in 2 months!  My lungs have been a weak point since childhood, allowing colds to become bronchitis, then pneumonia, rather quickly.  Unfortunately, the z-pak the Dr gave me didn't seem to phase it this 3rd time.  Of course my situation worsened last Sunday evening, while we had my niece, nephew and their 4 daughters visiting for the long weekend.  Dale had gotten the flu the day before they came, so she stayed hidden away in her room for the entire weekend.  Sorry Kim, Nick, Courtney, Jocelyn, Lauren and Tess.  Thank you Hillary for carrying the load.  So Dr Malone is in Death Valley for a 200 mile bike race, but thank heaven for Dr Lewis who was on call.  All the local pharmacies were closed.  The 24 hr Walgreen's in Atascadero (30 mins away) was closed because the pharmacist was out sick!  Dr Lewis was willing to meet someone at his office in San Luis after his family gathering, so poor Darrell had to drive the 50 miles to meet him around 9 pm to get me the new and improved drug, Cipro.  Thanks Darrell.

The worst part of it was that I was having to cough so often and hard that it was causing terrible spasms in my sides, ribs, abdomen, lower back and chest.  Usually the spasms would be in one or two spots, and would go away after a minute or two.  A couple of times they all went spastic on me, for several minutes.  Reminded me of the good ol' days of the spasms due to my collapsed vertebra, and probably just about as painful.  Thank heaven its improved to just 1 or 2 areas, 3 or 4 times a day. 

The good news.  I've lost 8 pounds so far.  The bad news.  Tonight we were supposed to go watch our friends Liz Adams and her daughter Bailey, Carrie Ham and her daughter Macey, perform in a local production of Annie.  It's the last weekend too, so we're out of luck.  Tomorrow was supposed to be an extra special day.  One of the young ladies that attended our Muppet movie night, Rebecca Pechon, had asked me to baptize her on her birthday in May.  I told her that I thought that was too long of a wait.  2 weeks ago she asked me if I would do it on my birthday, to make it special for both of us.  What a sweetie.  Now, I'm too ill.  I spoke with her yesterday and told her I couldn't do it.  I so proud that she's going ahead with it and, giving a young man in our Ward, Cody Murdock, who recently received his mission call to the El Salvador San Salvador Mission, the opportunity to perform the baptism.  Way to go Becca!  Tomorrow was also supposed to be a joint birthday party for me and the King tripletts.  I know, I know.  Stay home.  Get your rest, 'cus if you don't have your health, you don't have anything.

Well, so much for the short post.  Hopefully I'll have some good news after my March 2nd appointment with my local oncologist (which, by the way, IS the 1 yr anniversary of my stem cell transplant & "2nd birthday"), followed by my visit to UCSF with Drs Wolf and Burch on the 8th.  At least I'm way ahead of where I was a year ago, and for that I'm truly grateful.  Thanks for your continued support and prayers.  We love you guys.