Saturday, May 29, 2010

Hi. It's me again.

Hi.  It's me again.  Last Tues Dale and I made another trip to San Fran for checkup.  I drove up, Dale drove back, which was a good thing, as I started getting ill with a cold that afternoon.  We missed Hillary, who was helping Betsy King with the triplets.  To Hillary we say, "You did the right thing".

The appointment went well.  We first had a short visit with Twee, Dr Wolf's nurse practitioner.  Then we had a long visit with Dr 'Adam'.  That's his first name.  He's Polish.  No one can say his last name, so they just call him Adam.  He was very thorough in answering all of our questions, and in gathering information for our ultimate visit with Dr Wolf.   He gave us some interesting information regarding the medical study of Revlamid, the chemo "maintenance" drug that I will soon be ingesting.  He basically told us that it's all very new and experimental, but that when they started the study a year and a half ago, after one year they realized that none of the patients taking Revlamid had a re-occurrence of the cancer, but that several of those taking the placebo had.  The drug company felt it immoral to make the placebo group suffer any more, so they pulled the plug on the study last December, and put everyone on the Revlamid.  Without it, my recurrence probability was in a year or two, with the whole stem cell transplant thing (not as much fun as it sounds or looks) again.  He stated that with the recent advancements in the treatment for my particular form of cancer, that he expected a "cure" within the next 5-7 years.  Now that's good news.

Then Dr Wolf and Adam came in and made the decisions.  My numbers are still getting better, though not all the way to "we don't have any worries".  I don't need a blood transfusion.  I do have to get a bone marrow biopsy again from Dr Bonis, our local oncologist, before I should start the Revlamid.  From the indicators from the blood test, the cancer is still being held at bay, but the biopsy will get it down to the basic starting point of the cancer.  Dr Bonis got me into the study group for Revlamid, so the company that makes it, Cellgene, sends it to me at no cost, saving $8,000 a month in the cost of the still experimental drug.  All I have to do is fill out a survey they may send me after 20 days of taking the chemo pills, or talk to one of their representatives via a phone survey.  If I fail to do either, I'm dropped from the program.  They only send 28 pills.  If I don't tolerate it well, I'm to take them for 21 days with 1 week off in between.  If I do tolerate it well, then 28 days in a row, with no break.  Hey, if it works...

One of the little tug of wars between Dr Wolf & Bonis is regarding my starting a calcium replacement program.  Dr Bonis doesn't want me too, as it could cause kidney damage over the long term.  Drs Wolf & Adam insist, but are willing to lower the originally planned dosage.  Plus, I'll be getting blood tests at least once a month, and probably twice a month, and they'll order a test that would indicate any problem that could be starting due to the medication and adjust the dosage or stop it altogether.  So Zomeda here I come.
I have had such a wonderful week.  First Floyd Butterfield, great friend and inventor (go to ), took the time to take me out to lunch and for indescribably good chocolate cake, and I got to visit with him and Karla.  I also visited with and took back the wheel chair that Kim Kunz loaned us and got wonderful hugs and words of love and encouragement from him and Melody.  Then Ron Hogeland picked me up in his new Cobra replica and took me to lunch and we talked cancer (Ron's a year and a half survivor himself) and then he and his dear wife Barbara and Dale and I went to a movie together!  Those sort of moments, moments that I have been waiting for for a many months, have really lifted my spirits as you can never believe.  As Ron said to me over lunch, "It's amazing what you appreciate when you've had cancer."  Family and friends are at the very top of that list for me.

So for now things are continuing to look positive (imagine that) thanks to all of your prayers and good thoughts on our behalf.

'Old Paint' 'ill Git Ya Thar an Back

Wednesday, May 26, 2010

A Visit from Mammy (&Jeff)

Last weekend Kevin's mother was FINALLY able to visit after a long 9 months and we had a wonderful time. Kevin's brother Jeff took time off to bring her for a long weekend.
Their first night Dale made a great family dinner that we all enjoyed
The next day we were able to visit our good friends the Kings so Grandma could see their 3 month old triplets.
Grandma Richards spent some quality time with Colton
While Dale caught up with Caleb
While I hung out with Conner
The next day we went to Cambria and stopped by a cool shop for a guy who makes cool things out of natural California redwood. He gave Kevin a redwood mushroom for the garden.
Then Jeff treated us to a FABULOUS dinner at Linn's! It was an incredible meal and everyone left very happy and stuffed. Thank you Jeff & Mandy for the wonderful meal with the whole family.
Sunday morning we had to say our goodbyes but everyone had a nice time even though it was short it was about time.

Post Cancer Party

While we were in southern California for some Disney fun (without Kevin) we had a family & friends post cancer party.
Kevin meet with Sandy, our friend who's a chiropractor for some post treatment help.
He was able to get an adjustment, some helpful supplements and cell simulator on his back.
Then we got down to partying
 The Tulanian's, Olson's, Whitaker, Westbrook bunch
Judy (she's one of Kevin's "special friends") and Nancy
Kevin's niece Amberly, son Radley, husband Aaron, Dale, Kevin and Dale's brother Rick
Kevin's nephew Dan and Elle (we missed you Taryn)
Nancy, Kevin and Rick
Kim & Nick's adorable girls Courtney, Jocelyn and Lauren made a castle and village
We all had a wonderful time. Kevin was feeling great and did a lot of walking and standing at the party. Every day he is improving and making great strides in progress. His friends and family have been a crucial party of his speedy recovery and we are entirely grateful to you all!

Friday, May 14, 2010

Our Happy Place

Monday evening we had a nice Mother's day surprise, Grammy's sister Skid and her daughter Chris came for a visit. We had a delicious dinner with them and were able to catch up. Grammy & Skid are a cute pair, Grammy can't talk and Skid can't hear. They are the sweetest old ladies ever, WE LOVE THEM!

Dale & Hillary's 'Happy Place' is Disneyland which is why we have annual passes. Dale's is about to expire and oddly enough we didn't have much tome to use it this last year. So it was time for 1 last hurrah. 
We brought Tara along to celebrate her graduating with a masters in occupational therapy and met up with some friends & family along the way.
Disney has the best hats, we had a great time trying them on.
My cousin Kim & her two youngest met us in the morning for kiddie rides, which we love just as much as the kiddies! Loren & I rode the rocket ship ride.
In the afternoon our long time friends Joyce and her son Lance met us for part of the day. We rode Tower of Terror twice. Once because Tara had never been on it before and twice because it is SO much fun and we couldn't get enough!
(We are all in the front row Dale, Hillary, Tara, Joyce & Lance)
Then on to Toy Story
We had 2 wonderful, magical days at Disneyland and now are feet are killing us! We get to spend the rest of the weekend with our friends and family. It is so nice to have a mini break and get away from home and hospitals. We are all having a nice time and enjoying ourselves.
Friday we met with our fellow family camper Dr. Sandy T. who is a chiropractor and holistic healer. She was able to determine what vitamins and supplements Kevin needs to help his body heal after this traumatic 9 months.


Monday, May 10, 2010

I Used To Be 'Big Boned'

     Today I met with my wonderful local oncologist/hematologist, Dr. Wm Bonis.  Everything looks good, even though my red count is not high, but it's likely still the aftermath of my drugs.  But it's also not low and I do not need another transfusion!  He stated that the numbers mean that I'm ready to start the "maintenance" program of Revlimid.  He and Dr Wolf are a little at odds over the dose and duration thing, and we'll have to resolve those issues during our appointment with Dr Wolf on May 25th, but we're ready to move forward with the next step.   I'm doing very well and have even gained three pounds, FROM EATING! Whoa.
     The first thing you do is get into a "program" sponsored by the drug company.  Revlimid is a sister drug the phalidamide.  Remember all those deformed babies from the 60s due to phalidimide?  Well, that's one of the drugs that they tried to get me on early in my cancer, but I threw it right up.  A drugs no good if you can't keep it down, so we did other chemos.  But apparently it's good (or would it be more correct to say 'bad') for the cancer.  Fortunately, I only have to take it for 3 weeks in a row, then I get a week off to let me and my body adjust.  Good thing, THEN it's only $8,000 a month, the good Dr informed me.  His nurse, Nancy, started the paperwork for us to get into the 'program' where the drug company, because it's still experimental, will cover the cost as long as the Drs keep good records, I am monitored at least monthly with blood tests and such stuff, the Drs and I make the information available, and I contact the company via telephone to report how the drug is effecting me monthly.  Interesting to note that if I fail to call them, they cut me off and I have to re-qualify.  The prescription is for 21 days, only.
      The other fact of note is that Dr Bonis is not big on me taking the super calcium drug that Dr Wolf recommends for re-building my bones because it can cause kidney damage.  Dr Wolf is less concerned about that.  My twentieth or so miracle in my recovery after my initial near death by kidney failure experience was when Dr Lowell Lo, the neuphrologist (kidney Dr) said he'd be happy and I'd be lucky to have 25% of my kidney function after my initial 3 days of dialysis.  Do you remember this story from my very first week at UCSF?  He's the one that I told would have to admit that my recovery would be a miracle, and he laughed.  Then my kidney function went from 20%, to 25%, to 35%, to 50%, to 60%, to 75%, to (spoken with a fairly thick Chinese accent) "They're rike in plistine condition!" (like, pristine).  He finally admitted, "It is miraculous".  My bones were eaten so much, particularly my vertebrae, that I lost about 2 inches of height.  My left shoulder blade has holes in it.  My ribs broke so easily that I broke a few of them just rolling out of bed.  Big tumor on my right hip (since zapped by radiation) that left a big dent.  3 collapsed vertebrae, since repaired.  Every bone in my body was effected.  After my bone scan I asked the Dr for a report.  He just said, "You don't want to know".   I just realized, I'll have to remind Dale that due to the cancer, I'm literally not as 'thick headed' as I was before.  She'll probably just say something like, "Well, you make up for it with your lack of mental acuity due to your chemo brain, Einstein."  Maybe I won't say anything.

Sunday, May 9, 2010

Blessings All Around

Last Sunday our entire family had the opportunity to witness the baby blessings of three very special little boys. Our close friends, family really, had triplet boys February 24th and Sunday they were given beautiful blessings by their father Brett.

Proud parents Brett & Betsy with Colton, Caleb, and Conner
We love being a part of their family and I know that Kevin & Dale are looking forward to some quality baby time. Do you think the boys will mind being surrogate Richards grandkids?
Here's a picture of most of the baby's entourage a few had to leave early.
It was a gorgeous Sabbath day! Kevin was so excited that he had pep in his step and wasn't extremely tired after church like usual.  He even bore his testimony for the first time in 8 months over the pulpit. I think he has the most fun re-introducing himself to close friends in the ward who wonder who is this bald, skinny, new guy? He comes home with new stories of re-introduction each week. His spirits have been so brightened threw his visiting with friends and FINALLY getting out of the house. Kevin is working on some new exercises and stretches to help whip him into shape but like the rest of this experience it will be a slow and steady process. For now we are enjoying the sunny weather and healthy days!

Friday, May 7, 2010

Many Suspected I Was A "Quart Low"

Hi Everyone;

I just figured it was time for me to give another update.  I did get my blood transfusion on Thurs. April 27.  I had forgotten how long they take.  I was at the Outpatient Clinic at our local hospital from 9am to about 3:40pm.  I had to get 2 'units' of blood.  On Sunday at church when Roger Oxborrow asked how I was doing and I told him about the transfusion, he simply stated "We suspected that you were a 'quart low' for a long time."  I'm sure he spoke for many.  A person only has about 5 quarts in them, and being a quart low, especially while I'm trying to recover, was a great concern of my doctors.  It was also the impetus for a tremendous improvement of my condition.  I was worn out from sitting in the clinic all day Thurs, and Fri morning wasn't much better.  I took a little nap and when I woke up about 1:20pm, it was like a switch had been thrown.  I FELT GOOD!  I mean I felt really good.  I had energy, and I had hunger.  Somethings that I hadn't experienced for 8 months.

I went into the office in town for a short time and when querried about dinner I responded that pizza sounded good.  Dale had made pizza at home about a week and a half earlier, and I tried a sliver, and that was all I could eat.  We got pizza from our family favorite in town, (ham and artichoke, light on cheese, extra sauce) from Chubby's, and I ate 3 big pieces!  And lived.  Sat. morning Darrell & I spent about an hour polishing up the 2 waverunners to get ready to sell (no real income for 8 months other than the support & love from family and friends) then dropped off my old motorcycle to donate to the shop, then had a Carl's Jr. burger with Darrell and ate all but 2 bites.  And lived.  Then went with Hillary to hold one of the triplets (Connor) and visit with Brett about their blessings.  What a day!  What a difference.

Sunday was a very important day.  I was able to assist in the blessings of Betsy (top billing) and Brett's triplets, Conner, Colton and Caleb.  Plus, all of my family was at church as well.  First time in over 8 months. What a great and spiritual experience that was.  We were also able to visit with some friends and former Ward members who came into town for the blessings.  Arnie Zumbrunnen (sans wife and daughter who were up in Washington for a baptism of her nephew, I believe) and the Salanoa family (with their 5 boys), who will soon be moving to Colorado and many of Betsy's and Brett's family.  What a great treat that was.  I wouldn't of  had the energy for the visit before the transfusion.  I'm very thankful for the strength that our Heavenly Father blessed me with that allowed me to be a part of all that.  Then, back home for a wonderful family dinner with all of the kids and Grammy.  What a great day.

Today Dale and I went in to town to have a blood draw for my appointment with my local oncologist on Monday.  We'll let you know what he says, but we suspect that everything's going to be good.  Then Tues. we leave for So. Cal/OC so Dale and Hillary can go to Disneyland.  They have season passes and with my cancer they haven't been able to use them.  So now, Dale and Hillary can go and get their money's worth.  The best part for us, however, is the get together on the 15th with family and family camp friends that we haven't been able to see for such a long time.  I have 2 nieces (Kim and Taryn) with 2 brand new babies, and another great-nephew (Amberly's) that we haven't seen since just before the cancer was diagnosed.  I will be in hog-ett (remember, I lost 80 lbs, so I'm not really a 'hog' anymore) heaven with these dear people.

I had a wonderful telephone conversation with a dear friend and she made the statement, "It must have been just horrible".  I had to respond something to the effect of, "It really wasn't.  Not for me anyway.  Every day, as I closed my eyes, I could feel the power from people's prayers pouring into me.  I could see their faces.  I felt their love.  I've had 18 priesthood blessings.  The first telling me that I was going to live through this, with the others giving me specific blessings to get me through whatever I was going through, or what I wanted or needed at that time.  I've had personal spiritual experiences that are too sacred to share.  It really wasn't as bad as it looked."  I have to thank all of you for that.  I was so out of it that I thought I was a UN delegate, was left handed, and even called my mother in Utah to tell her I was pregnant!  Just to name a few.  Talk to Dale and Hillary for the full score on these.  Your prayers and good thoughts on my behalf kept me sane.  Blessed me.  Sustained me.  I hope that some day I may be able to repay my debt to you all.  Love.  Kevin

Hillary's Trip to Utah

I was able to break away and visit my relatives in Utah at the end of April.  It started off a little rocky when my flight was canceled due to a flat tire. Luckily I was re-routed quickly and still able to make it the same day. I got to spend a few hours in the San Francisco airport where I had a great view of our old hotel and walking path. It is still all too familiar.

The day after I arrived I was able to go and visit my amazingly strong cousin Becky. I apologize up front for the picture Becky. (she was trying to get Aida to smile but she was overwhelmed by strange, new people)
Becky was diagnosed with Nodular Sclerosis Hodgkin Lymphoma (cancer) in March. She just finished the 4th of 12 chemo treatments and even thou they kick her butt she is still a wife, mother, researcher and working. Becky is probably one of the strongest people I know and I learn so much from her each time we visit. I wish I would have had more time to spend with her!

I spent some quality time with Grandma Richards as she was healing from a knee injury. After some physical therapy she is feeling better and hopefully will visit us is Paso Robles soon enough. I went to Brianna's Graduation from BYU. What an amazing accomplishment, I'm so jealous!
Brianna wasn't going to let the rain get her down she was just bursting with joy!

Most of the time I was able to visit with my cousin Holly, her incredible son Spencer and adorable Isabelle & Gavin. Spencer was diagnosed with Rhabdomyosarcoma (cancer, he has a tumor near his brain effecting his facial nerves)
Spencer has a tough battle ahead of him but he's a fighter and has a wonderful sense of humor which has already been a BIG help. It was so wonderful to be with them and witness a small piece of their incredible journey. I love you, you are my Super Spence!

A friend of Holly's makes 'Lolly bags' and was donating proceeds to Spencer's care. My mom quickly ordered one. They make wonderful hospital bags. Here is Melanie with my mom's bag (the green one) and an adorable ruffle bag that I am drooling over!
To checkout her Lolly Bags visit

On Sunday we had a wonderful family dinner and I was having such a good time eating and talking that I didn't take any pictures! I am upset with myself about this, arrgh! The food was phenomenal and the company even better. I am looking forward to a LOT of new positive changes in my life.

Thank you family and friends for a wonderful vacation that you made perfectly relaxing and enjoyable. I can't wait to do it again!