Thursday, June 24, 2010

"Good" Drugs, "Bad" Drugs

As I've been following my nephew Spencer's blog, The Journey of a Superhero http://www.mysuperspence.blogspot.com/, and my niece Becky's blog, Don't Panic Roger I have A Plan http://www.takinglumps.blogspot.com/, I've noticed several things that we all have had in common with our hugely different types of cancers.  Some of the drugs/chemos that we've been given haven't affected us too badly (which I'll refer to as "good" drugs), and others which have kicked our hineys all around (which I'll call "bad" drugs.)  The term good or bad has nothing to do with their effectiveness in our treatment, just what it does to us.  For instance, Becky talks about how the neupogen shots she's getting aren't doing the trick for her and her white counts are still very low.  Whereas I took neupogen shots and it boosted my white counts so much that it was again deemed another miracle.  For Becky, neupogen is "bad", as it has side affects and isn't doing what it's supposed to do, and for me it was "good".

With my new maintenance chemo drug, Revlimid, it's been 2 weeks since I started taking it.  The first few days were not bad, and I thought, "This is going to be great."  But after those few days, it got bad.  Pounding headaches that would not quit no matter what I tried.  Lightheadedness and dizziness.  Painful body aches.  Painful muscle aches.  And then there's always the nausea.  As of today I've lost 6 of the pounds I gained back.  I'm back to 161 from 167!   Apparently I'm going through "chemopause" a well, as I've been having night sweats the last week or so.

The symptoms were getting so bad that I went to the doctor last Thursday.  I was able to meet with Tim Souchek, the PA for the oncology office.  He was very thorough.  Asked a lot of questions, then basically said that all of the symptoms were to be expected from the chemo.  Then he made a very profound statement:  "In a week or two, the symptoms are going to get better, or they're going to get worse.  We'll have to wait and see."  He told me to take it very easy for the next few days because he was worried about blood clots in my system.  He ordered blood work to be done, and I found out it's "normal" for my circumstances.  I was getting worse by the day.  Saturday I could barely move ON the couch, let alone from the couch.

In March I started the process to try and qualify for Social Security disability until I can get back to work.  I was told that everyone gets denied the first time.  One client was denied 4 times before they approved him.  Here's how it works, they said, they deny everyone.  No one I talked to, including attorneys that deal with this stuff, said that they had EVER known anybody to be approved with the first application.  You may be guessing now where this is going.  On June 9th I turned in all of the medical reports that I had received from UCSF, to finish my part of the application process.  On the 15th I got a call from my Social Security adviser letting me know that they still had to get the records from the local doctor and hospital and that the process would take up to 6 months to complete.  Then the doctors had to review all of the information and make their determination.  Then they'd let me know.  Since the 9th I had gotten several computer generated form letters from the SSA, all of them a waste of paper.  On Sat. Dale threw another one to me.  I set it aside at first.  I wasn't up to any garbage now.  I was feeling horrible.  After a few of minutes, though, I felt like maybe I should open it, and did.  It was the SSAs notification that my application had been approved and that my benefits would start on July 28th.  Talk about another miracle!  Heavenly Father, despite the whole Revlimid thing, was truly blessing us and looking out for us.

Because I was feeling so lousy I told my family that I wouldn't be going to church Sunday.  "But you have to.  It's father's day."  "Just go for sacrament meeting... etc".  It went on for some time, so I knew something was up.  Sure enough, Darrell was the concluding speaker.  He did a great job talking about fathers in general and our Heavenly Father.  My family knows how much I do not like "person-a-monies", and he did a great job avoiding that.  He did throw in a few things about his father, most of them complimentary.  We were all very proud of him and the talk he gave.

So now it's Tuesday.  I haven't gotten worse, and I may have even gotten a little better.  I'll let you know.  But I'll tell you one thing.  If I have to do this for 2 more years to stay alive, I'm up for it.  I'd miss you all too  much.  Thanks again for your prayers and good thoughts on our behalf.

Love.  Kevin

Monday, June 14, 2010

A HAIR RAISING EXPERIENCE

It's been several weeks since my hair started re-growing and many of those who are not able to see me on a regular basis have been curious about what they've heard.  Because it's gotten warmer (hotter really) I haven't been wearing my hats.  Maybe the extra exposure to sunlight has kick started the process of hair growth?  I'm just hoping that my Revlimid use doesn't stunt the growth.  It's maybe a quarter inch long all over.  You can't see it from these pictures, but it's very white on the sides and much darker on the top. 




It was kind of funny at first, because it initially came in on top faster than the sides, so it kind of looked like I had a Utah buzz mullett.  We should have gotten a picture of that.  You all would have loved it.  I had to carry around my banjo so it didn't look so weird.

I gotta tell you some more good news about wonderful blessing that a young man and our scoutmaster in our Ward have put together.  All Conner Jorgensen needs for his Eagle Scout award is his project.  Our scoutmaster, Matt Purkiss, also just happens to be our wonderful home teacher.  He was aware that just before I got the cancer, we were working on getting new windows and siding for our house.  Well, needless to say, that money's gone.  So Matt and Conner have gotten together and received approval for Connor's Eagle project to be the re-painting of our house!  Normally Eagle projects are not approved for individuals, but I guess all those years as a scoutmaster, district representative and council participant paid off.  We'll get you pictures to keep you updated.  Thank you Conner and Matt for your kindness.  Not to mention all those that will get sucked into helping with the fundraisers, prep work, painting, etc.  Now I'll have to try and keep from getting paint in my hair.  What a wonderful problem.

I also got an email from Dennis Lozano's sister-in-law this week.  He's still doing pretty well, and may be coming back to SF for a checkup in July.  If he does, we plan on going up to see them.  They are such wonderful people.  Thank you all for your continued support, love and prayers for me and Dennis.  We still need them.  The Revlimid is kind of kicking me in the rear today.  Tomorrow will be better.

Love.  Kevin

Thursday, June 10, 2010

BIOPSY RESULTS

Dr. Malone called and let us know that the preliminary pathology reports from the bone marrow biopsy on Monday are negative for the presence of cancer.  Which is positively a positive thing.  We have to wait until the results come back from the out of state lab about the enzyme and protein tests, but he expects those to be clear of cancer indicators as well.  So for now I continue taking my Revlamid and hope that the headaches, body aches, nausea and digestive problems work themselves out as my body re-adjusts to having chemo coursing through me.

I also had my annual melanoma checkup with my dermatologist yesterday.  Had two  pre-cancers burned off and one uglier one burned off that we need to keep an eye on.  All in all, another good report.

After my appointment with the Doctor, I had a great visit with Randy Jorgensen who took me out for lunch at the 'Grad' in SLO.  The place hasn't changed a bit in the decade or decades since I was last there.  But they do have a good lunch menu.  Thanks Randy.

So good news from every angle today.  I'm looking forward to my continued recovery.  We'll have to take another photo of me and my beginnings of new hair.  It's coming in salt and pepper.  Slowly.

Tuesday, June 8, 2010

My Doctor Disappeared

Many of you have been wondering what's been going on with me since my last visit to UCSF.  Well, the most interesting thing is that just as suddenly and mysteriously as he appeared 2 weeks before my cancer needed to be diagnosed and me to get up to UCSF, Dr. William Bonis, has left his practice and we don't have a clue where he's going or what he's going to do.  I just had an appointment yesterday with one of his associates, Dr. James Malone in San Luis Obispo, for my bone marrow biopsy and to assess my starting the maintenance chemo Revlamid, and asked him.  He said he didn't know and hadn't talked to him since Dr. Bonis had made the decision.  And I believe him.  We also talked to Dr. Bonis' office manager, who didn't have a clue either.  So, even though technically he's "working" through the end of the month, due to his vacation schedule for the next 3 weeks, he was officially gone last Thursday.  So that's why I couldn't get an appointment for my bone marrow biopsy scheduled, yet he didn't want me to start the Revlamid until after the biopsy?   Wherever you are Dr. Bonis, I thank you for saving my life and wish you the best in your and your family's life.  God speed.

My 3rd bone marrow biopsy went well and was quite interesting.  Dr. Malone showed Dale & I the blood and marrow and how he prepared the slides for pathology.  It was quite interesting.  Then he told me to go ahead and take the Revlamid.  We like Dr. Malone, but he's no Dr. Bonis, yet.  Dr. Malone's a Stanford trained Dr. who also taught there.  I never would have made it to UCSF.

The Revlamid gives me a headache, makes me nauseous, clouds my mind a tad and makes me even slower than I already was, and makes my body ache.  I haven't had chemo for 3 months.  I just got it OUT of my system for goodness sakes!  It'll take my body a couple of days to adjust, but, I think it will be OK soon.  21 days on the drug and 7 off.  We'll keep you posted.

It will take a couple of weeks before we get the results back, but we're expecting the best.  We'll let you know when we hear something.  Thanks for your continuing prayers and good thoughts my way.  I really do appreciate it.  In fact, I'm very honored.

Monday, June 7, 2010