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.  

The Blah, Blah, Blah, Blog

Just going to get you caught up with the last couple of months.  Should have something really good to share soon, as a week from Monday (Feb. 6th)  I'll be back in SF for the radio frequency ablation on my spinal nerves that are giving me pain.  So until that story unfolds, you'll just have to listen to to the blah, blah, stuff.

I probably told you that chemo makes your skin photosensitive.  Well, when you're a very white person who has already been through the melanoma thing, the chemo can apparently really cause them to pop out.  Understand, the skin cancers that we get are from exposure and damage decades ago.  Well, just like with my cataract and gall bladder, chemo speeds things up.  I went to my regular dermatologist mid-December.  I saw him a year ago and only had a couple things frozen off.  This time he was not so happy.  16.  That's right.  I had 16 little pre-cancers that had to be frozen off.  I now have to wear long sleeves pretty much all the time, and I have to wear sunscreen on my face, and especially on my hands, every day!  It's like having to wear makeup!  I had 2 on each of my hands at the end of the thumb near the wrist, and 1 on the top of my left hand.  Why you ask?  From having my hands on the steering wheel and the sun beating through the windshield.  3 on my left arm.  1 pretty big and bad.  Sun through the drivers side window.  The rest on my face and ears.  So just remember kids, too much sun can kill.

Throughout December and January every time I walked out of the house I caught some bug.  It was funny having my monthly interview with the pharmaceutical company that supplies my chemo pills.  We chat about side effects, and infections, and rashes and things since my last interview.  You know, just like girl talk.  So as I'm explaining what's been going on the representative taking the report asks: 'So any infections this past month?'  "Yes.  A bad sinus infection.  A bad bronchial infection that we kept from becoming pneumonia.  An ear infection that my Dr. deemed a very angry ear.  And eye infections in my right eye which was bad enough to close it up with swelling and green gunk that would become crusty requiring me to wash the eye with warm water in order to try and flush it with saline, and left eye that wasn't quite as the right eye."  'Wow, you've had quite a month", she exclaimed.  "Month?  I had all of them at the same time over a two week period.  I still have the bronchial and sinus infections, the ear ache is mostly gone, and I can see now out of both eyes."  The girl freaked.  'What?!  Wait while I get the pharmacist on the line please.'  The pharmacist and I had spoken many times over the past 20 months that I've been in the daily chemo trial.  She was cool.  'Well Mr. Richards.  I hear that you're carrying on with your tradition of either being really good or really bad.  I think you may have set another record.'  That's the way it is when you have very little of your immune system.

Here's the other thing about being on chemo, and then starting a antibiotic series:  they don't play well together.  Now the antibiotics chased the infections away, and for that I'm truly grateful.  It also made me sicker than I have been in a very long time.    I will put it less delicately, over a period of several days, I broke records for nausea trips to the bathroom.  It was coming and going.  I was very glad when the 10 day treatment ended.  I think our water bill was double for a normal month.

Now I want to say a special thank you to Dr. Sandy Tulanian.  My internal organs have been protesting the pounding of chemo that they received during my treatments up to the transplant. They have been also getting tired of the long term exposure to the daily chemo process as well, and rebelling.  Dr. Tulanian diagnosed my physiological needs to combat the damage, and provided supplements.  Well, after two months they stopped the downward spiral.  My oncologists were impressed.  My last tests showed that in fact things are actually getting better inside.  Way to go Sandy!  So, it will likely be a recurrence of the cancer that will kill me, and not from organ failure.  At least they're still working on better drugs with less side effects and less damage to other organs, or perhaps even a cure.  Till then.  Pills.  Lots of pills.

Here's the latest report. I had a test that showed that my IgM level had doubled in a month.  Usually, this is an indication that the cancer is coming back.  Not for me.  The chemo is designed to suppress the production of those IgM cells, which is where my cancer was.  But my body produced an increase of those cells, with them being GOOD cells, not bad.  I take this as a good sign.  It could also mean that the cells are adapting to the chemo and that the chemo is becoming less effective, but I don't see it that way.  As a matter of fact, Dr. Wolf discussed with me at our last appointment Jan. 15th, that he might take me off of the Revlimid altogether, or reduce my usage, in May or June of this year.  He said that by doing so it would allow my organs, and particularly my neuropathy, to improve and get healthy again.  We have learned that the Revlimid works for me, so when the cancer comes back we just start the chemo again and knock it down.  SUWEEET! 

Many have asked about what side effects I get from the chemo.  Let me 'splain.  No, there is no time.  Let me some up.  Extra credit if you know the reference.  I take the pill before I go to bed.  About 20 or so minutes after I take it, the fun begins.  First, you know the feeling you get sometimes when you feel like you have bugs/things crawling all over your body?  That's the chemo affecting the nerves.  Crawlies for about 2 hours or so.  I try and read to distract me, but I do itch them every so often.  Second, after about 30 minutes, the body aches and bone aches start.  I really try to be upstairs within that time or it's actually a chore to get up to bed.  Unfortunately, the body aches make the back aches from the spine issues worse.  Then there is some nausea.  There are a few times a night when I feel that I have to get up and throw up or have diarrhea.  Usually I just pee.  And usually I don't have to throw up or sit on the Fritz (German john), but there have been times when I thought it was  false alarm, and well, it wasn't pretty.  Especially at 2 or 3 in the morning.  Fortunately the side effects begin to wear off around 4:30 to 6 a.m., depending on when I took it the night before.  Those that know me best know that I WAS a morning person.  I would get up at 5:15 to go play basketball and to teach seminary.  Now, if I can sleep until 9 or so, it's heaven.  Today, I woke up at 9:40.  I stayed in bed re-re-reading my Gospel Principles lesson and jotting notes until  about 10:30.  I don't mind 1pm church.  I trade a nap for sleeping in.  Another side effect is the neuropathy.  The chemo kills the nerves.  I have very little feeling in my fingers, hands, toes, feet and brain!  While having the missionaries to dinner last month I was slicing some pieces of beef stick for them.  Elder Sorenson brings it to my attention that I've got blood all over my hand.  Pretty good slice.  I told him that if it weren't for the neuropathy that would really hurt!  I can't open bottles with caps very well. I drop everything because I can't tell if I'm gripping it tight enough.  I did have a golf club go flying out of my hand during a swing. My toothbrush drops out of my hands all the time.  Think about it.  I HAVE CHEMO BRAIN.  It's like chemically induced dementia.  My skin is paper thin, rough and crusty.  I'm lizard boy.  You could blow on me and I'd bruise. Thanks to a wonderful and beautiful young lady in our ward by the name of Kim Engard, who happens to be a Mary Kay distributor, she has provided me with an array of lotions and scrubs that make my skin soft and less objectionable.  The chemo's turning my hair gray! Can you imagine!  At my age! Dang it.  How about being tired all day every day?  See, with 1/3 the normal number of red blood cells in my body there's 1/3 the oxygen and energy getting to my body.  With very little immune system your susceptible to every thing that's out there.  Then there's the digestion issues.  Assimilation of nutrient issue.  My goodness, it just goes on.  I'll stop here.  For those that asked, well, you won't make that mistake again, will you?  For those that didn't, well, TMI.

Please, don't get the wrong idea.  I am not complaining.  If it comes off that way, I don't mean for it to.  I am grateful for what I have, any life at all.  I can do so much more now that I could a year ago.  Two years ago I was at UCSF hospital doing chemo loading prepping for the stem cell transplant.  I made it through 3 hours of church.  I taught the Gospel Principles lesson.  We had 6 or 7 investigators at church today and I had the opportunity to bear my testimony of Heavenly Father's love and power.  I was able to give a sister in our Ward who is struggling with her cancer treatments a blessing.  I have received 21 blessings through my treatments.  I will get my 22nd next Sunday before my trip Monday to SF.  But this time I was able to give the blessing, not just receive one.  I made dinner.  I love my life.  I'm grateful for my "new normal" as we call it.

Well, you didn't have to get to the end to figure out the title, did you.  If you made it this far, and even if you know someone who tried but just started hearing blah, blah, blah, I love and appreciate you all for what you've given me.  My new normal.  I'm wishing all of you a great life, full of new and improved normals, without the side effects.