Wednesday, March 31, 2010

Definately NOT Like A Baby's Bottom

As you already know, I've had my stem cell replants and didn't do very well in recovering from it.  I'm home, and am suffering some side effects as I work on getting stronger.  I really don't think that I understood what the process meant to me until May, my last nurse at UCSF explained it to me.  I wanted to share with you what she told me.  She said, "You are now just like a new born baby.  All of your old insides have been destroyed and now you have brand new insides, just like a new baby.  You have no immune system, so you have to treat yourself like you would a new born baby.  You wouldn't just pass your baby around to anyone.  You are careful to gradually expose your baby to the things of the world.  You have no digestive system.  That is the last thing that will mature in you.  So you have to be cautious of what you put in it, like a baby, until it matures.  You have to be careful for several months."  For some reason, her explanation just hit home.  Perhaps it was the timing with the birth of the King's triplets.

So now, after the doctor said, "You are under house arrest for at least a month", it makes sense.  And when he said, "and don't go into places where there are groups of people, stores, restaurants, and similar public places, especially where there may be illness, for at least 3 months", it made sense.  May then made a statement that she knew I really want to go to church, but can't.  So it will be a few more months until I can meet with you at church. 

I miss you all so much.  I appreciate your continued prayers, cards, emails and text messages.  I love you and can't wait until I can see you all again.  If you are well and illness free, please consider coming to visit.  I can see one or two people for short visits.

With much love and appreciation for all of your support.  Kevin

Sunday, March 28, 2010

Family Portrait

We never take family pictures so...


Stick Figure Family at FreeFlashToys.com
Make your Stick Figure Family at FreeFlashToys.com

(Hillary)

Saturday, March 27, 2010

Return to the Jungle...

First of all on Thursday Dale & Hillary FINALLY went to visit with our family camp friends Ben & Leslie in Tracy. It was so much fun playing with there cute kids!
Ethan, Curtis
 and the adorable twirling Sara
 Leslie baked muffins for us to take home, a much needed home cooked meal and let us do our laundry. It was a great visit with good friends.

On Friday we meet with Dr. Martin for the final all clear to go home. We also meet with the pharmacist to get the latest list of drugs Kevin is taking, yippee.
My best friend Tara came to say goodbye before we headed home.
 
 
It is so good to be home and enjoy the beautiful spring weather. It was a perfect day so we all spent it outside because our hill has become an African Jungle while we were gone. Rain + Warm Weather =
Attack of the Weeds!

Darrell weed whacked while Hillary raked up behind him...
Candice mowed...
Mom pulled weeds and....
Dad supervised!
Then we had a family dinner (Grammy included) of Costco lasagna with veggies and watch the Blind Side for the first time.
It was a GREAT day :-)
(Hillary)

Friday, March 26, 2010

WHOO HOOO

Today he is being released and we are going to head home! We are all so excited to get back home and get outta here. I'm sure he will be exhausted from the ride home so he will probably sleep for the next few days. He has an appointment with Dr Bonis on Monday and may need regular blood & platelet transfusions. We will have to see how it goes.

We have to come back to the clinic is San Francisco on April 6th to determine is Kevin will do heavy chemo for a little bit before he starts taking lower doses of 'maintenance' chemo forever. We are so grateful to be near the end of our first bout with Kevin's Myeloma but this will be a life long battle for Kevin so thank you for your continued support. We love you all SO much!

Hillary

Wednesday, March 24, 2010

Fill 'em Up

Kevin is starting to feel a little better. The diarrhea is clearing up but we are hoping it won't go to the other extreme because that could keep us here longer too. He is still having a hard time eating and keeping food down. He eats very little and is still nauseated most of the time even with the drugs.

Today they gave him some more stem cells but without the nasty chemo. This won't make him feel better now but in the long run they will help his counts. Dr. Wolff had talked about this as a possibility last week and Dr. Martin decided they should do it while we were already here. They take about 10 days before they start reproducing. Because they have so many of Kevin's stem cells in the bank, enough for 3 more transplants, they gave him another bag. It is very unlikely that they would ever do 3 more transplants for anyone. 2 more will be pushing it because of how bad Kevin reacted to the transplant and he won't be as young the next time but it is always possible.

Dale & I are hanging in there. A month is a long time to be away from home, Candice, Darrell, Grammy, our friends, my primary class and our cats. We are SO ready for this to be over with but love our daily walks around the bay. As much as we love the staff and have grown to know so many of them well we are ready get outta here. Everyone is so nice and pleasant even Janet our good friend who works in the booth in the parking structure. She is so friendly, we have seen her on and off for the past 6 1/2 months. We bonded when she told us her boyfriends last name is Richards too and have looked forward to her smiles and well wishes each evening as we leave the hospital.

Sunday, March 21, 2010

A Chaplain, 2 Elders & An Ex-Bishop Walk Into A Hospital Room

So the hospital offers spiritual support to it's patients through Chaplains. Kevin has seen many throughout his many visits and enjoys sharing his knowledge of the gospel with them and the miracle's we have seen in these past months. The woman Chaplain that came by Friday mentioned that they have a few that play the guitar and sing if we would like that...heck ya! Mormons love a good sing-a-long, hahaha. Yesterday Aaron came by and the party started. He played and sang 5 or 6 songs and it was a lot of fun for everyone.
Bob Dylan Rolling Stone
video  
Simon & Garfunkel Homeward Bound
video
Today seemed to be a tinny step backwards, more diarrhea, time with "Pepe la puke," and he still can't eat much. We are so excited to get outta here soon but we also don't want to rush it. We thought that it was about time to get another blessing so we started calling local buildings to see if someone was nearby. A couple hours later Mark & Matt showed up.
Small world I (Hillary) met Matt at a single camp in Sept. it was weird to look up and see a familiar face. We expect Kevin to make some big improvements this week and for us to be home soon because we miss our friends!

Friday, March 19, 2010

Report from the Doctor

Kevin is finally on the road to recovery. Numbers are looking pretty good, although he will get platelets again today. Once he can eat and they get everything else under control we can go home! We are looking at roughly another week here.

We asked about the looming 2nd transplant Kevin was originally supposed to do but Dr. Wolff doesn't want to put him through this again. He says about 5% of patients react as bad as Kevin, about 5% don't have any reactions and the other 90% have a few bad days but recover quickly.  As Kevin says "He's such a wuss they're not doing another one."  Doc doesn't want to risk doing that again to Kevin so the "new plan," for now, will be to go home and start maintenance drugs like velcade and revlimid with Dr. Bonis. This is wonderful news because it means that we might be at the end of this cancer for now, HURRAY!!!

Hillary

Tuesday, March 16, 2010

Continued Improvements

Kevin is making steady progress in the right direction. He is feeling a little better and isn't 'as' crazy as he was. He is allowed to eat food again but it's been a while so he will have to start off slow. He is still nauseated and dealing with diarrhea but it is getting less frequent so he's happy about that. He has been so high maintenance lately that he actually had a sitter in with him 24/7. 
His 1st sitter, Fermeke, is from Ethiopia.
His 2nd sitter was from the Philippines but lived in Saudi Arabia for 10 years as a nurse before here. Sorry I didn't get a picture.We love how multicultural it is here!
We had a nice visit today with Kevin's favorite 'by the book' nurse, Agnes, from his 1st stay at UCSF last September. He didn't want to follow rules but she made him, it was a love/frustration friendship for both of them. (We were on Agnes's side)

Kevin's counts are coming up nicely. He has some immunity back which is good but we still have to be careful. They have taken him off some of the many 'goody bags' which were hanging on his 'tower of terror.' Little by little they will take him off meds, he will start eating & hopefully keep it down and get the diarrhea under control. Then they will talk about sending him home & when he might be coming back for round two. (Round two will be different, the doc wasn't happy with all of Kevin's reactions and will change the process for next time. Things have changed so much so frequently for Kevin's treatment that the doctor gets confused too, it's kinda funny)  

Dale & I decided to do our daily walk around the hospital to visit a community garden we had seen in the winter and wanted to see blooming. Here are some of the fabulously vibrant colors we found...
It was fun!
Hillary

Saturday, March 13, 2010

No Changes

No changes today.

Sorry if you received any 'drunken' phone calls from Kevin today. He's not sleeping as much but he's as crazy as ever. Did you know that Yul Brynner was doing a show in Golden Gate Park today, this is just some of the surprising things Kevin told us today. Keeps us laughing :-}
Hillary

Thursday, March 11, 2010

A little PROGRESS

Well today's numbers are finally starting to come back up, a little. They went from -0.1 to 0.1. He's not feeling any better yet because of this new GI tract problem but the doc's think in a couple of days we should see real progress. We are really hoping to see progress soon cause watching him suffer is getting old. Tonight they are going to start him on the food supplements through his IV and he also got a "pain pump" today. It releases pain meds automatically but he can push a button if he needs a little more when he's having a spams. This sounds great in theory but I am afraid he is so drugged he is not conscience enough to do it himself.  Every day we hold our breath as we enter his room waiting for conscience Kevin to greet us and not loopy Kevin, who makes us laugh but doesn't make any sense.
The tower continues to grow! So much in fact that they had to put a secondary IV line in his arm the other day and he will probably need a PICC line put in his arm again tomorrow. Only so much stuff can go in each line at a time and he's on TONS of stuff. This pic doesn't have him hooked up to the 'food' yet. His poor nurse is working overtime to keep his lines and all the meds straight. 

On a happier note my mom and I took another walk around the hospital instead of our trusty path by our hotel this morning. We mostly want to get a close up look at a restored old Victorian house that is stunning. On our way to it we came across this children play ground with this outside the fence
It made me think about how terrible he's feeling and how much his life sucks right now but he has oodles of daffodils, or friends, who love him, are praying for him, and will carry us through yet another low point. I am so grateful for you all and the joy and smiles that you bring even in our darkest moments. It's the same warm feeling I got when I saw these flowers today!
The detail work is unreal on this house and the colors are stunning up close.
We are surrounded by beautiful reminders that this earth was created for us and no matter what horrible situation we find ourselves in we can always find beauty and something to be grateful for!
Hillary

Wednesday, March 10, 2010

Treatment is Torture, Cancer Stinks

We knew it would be a horrible process but there is really no preparation for him or us. Watching someone suffer to this extent is excruciating. I have seen my Dad "mostly dead" before and it seems that through this treatment he has come full circle. The treatment has been working to kill the cancer but it darn near kills the man in the process. Because of the pain & discomfort they have basically put Kevin into a drug induced sleep. It is extremely hard to witness him suffer SO much.  He is having weird dreams that agitate him. His "tower of terror" is rapidly growing!
The bag with a yellow color is platelets. This is his 2nd bag today.
Today's numbers are on the far left had side dated 3/10. The last number is platelets. This morning it was 6 (anyone below 10 gets more) they gave him a bag and it went up to 34. This afternoon they gave him a second bag and from now on they will not let it drop below 50. The number 27.1 is his red blood, he will probably get a transfusion later today for that because they don't let it drop below 27. The other 2 numbers that are -0.1 means he has no immune system, these numbers should start to come up soon when his replanted stem cells start producing.

They are also giving him "food" threw his IV, he hasn't eaten anything in days and what little that when in before that didn't stay in long. He has been having cramping and spasms in his abdomen. They believe he might have Clostridium Dificly (don't worry we don't know how to pronounce it either!) Which is a bug we all have in our intestine, it has been agitated by the vomiting, diarrhea, loads of antibiotics & lack of food. This is normal in patience with NO immunity & who have received massive chemo. Just another bump in the road but it hits at the worst possible time.

To add to this rather depressing post for our blog we also recently learned that my cousin (Kevin & Dale's niece) Becky has Non-Hodgkin Lymphoma. It has not been staged yet they are waiting for the latest biopsy results. Becky is in her early 30's, has a husband and 6 month old baby girl. I feel like our family is falling apart all at the same time and my emotions are torn in so many directions. There is a link to her blog on the right hand side of our blog. I'm tired of bad news and cancer we need some good news STAT!!!
Hillary

Monday, March 8, 2010

Yippie!

Everything that's happening is supposed to happen, good news, bad news.  He feels lousy, nausea, diarrhea, no sleep, etc.  But, we just had a visit from this week's attending, which is our beloved Dr. Jeffery Wolf!  Dr. Wolf will be on for two weeks!  The doctors here are all superb, but we love Dr.Wolf because he is the doctor in charge of all of this, whether we see him or not.  He came in with an entourage who will all try to help him feel better now.  A new nausea cocktail and pills to stop the diarrhea.  They will start neupogen soon and that will make his stem cells grow and that will make him feel better!

Sunday, March 7, 2010

A Few Happy Photos

I figure while Kevin is feeling really, really, really lousy I will put some happy photos on the blog.Nothing can prepare you for how horrible having 0 white blood cells feels. The top number is Kevin's white blood cells which are ZERO. This is a really terrible process and we are looking forward to being on the other side of this transplant.
On Friday night Dale and I were able to attend the Oakland Temple for the first time since this roller-coaster ride started 6 months ago. We went with our dear friends Ben, Leslie and Tara. It was freezing and windy but we managed to snap a few shots. It was dark but the grounds are gorgeous, you can see a few huge tulips in the back ground of this pic.
We had such a wonderful time visiting with our friends that we got back late so we decided to sleep in on Saturday morning. There is a wonderful walking path right outside our door that we have been enjoying each morning but today was so beautiful that we just couldn't stop. We walked over 6 miles, which of course was NOT planned and may never happen again, we just keep wanting to know what was around the next corner. A room with a view.
Sunday morning we attended the singles ward with Tara, which is always an interesting experience. Then she cooks us an amazing home cooked meal, which is by far the best food we've had in weeks! We always have such a fun time visiting Tara!

Thursday, March 4, 2010

When 'Complete Remission ' Isn't

Hi everybody;

I just wanted to take this opportunity to say some thank you's and fill in some informational blanks.

First I was overwhelmed by all of the calls, email and text messages received for my birthday.  Thank you all for keeping me in your thoughts.  I wish you to know that those simple gestures carry a much more positive energy that I can ever explain.  I tried to respond to each of them, and if for some reason I missed some of you, I'm sorry, but let me know so that we can get properly caught up.

Many have asked wanting a little more in-depth coverage of what's going on, so I will oblige.

This visit was to give me a super dose of chemo called Melphalan.  Fortunately, I only had to do the chemo one day, not the 4 days as we had been previously been told.   It's had different side effects than from the previous chemo treatments.  Primarily, and almost exclusively, nausea.  Peppy-la-Puke and are have become friends again, regularly.  To relieve the nausea they give you drugs, some which make you drowsy.  All things considered, and of all the side effects that most of the others get, I'll doing very well.

The stem cell 'replant' was an interesting process.  Almost anti-climatic.  The technician (Stewart) and Nurse Practitioner (Sammy) both made comments about how many stem cells they were able to collect and the concentration.  The stem cells come in a little bag that's frozen.  They bring in a machine that is simply a defroster.  They take my temperature and thaw the little guys to that temperature before infusion.  My one little bag, if I remember correctly, was labeled as having 5, 174,000 stem cells.  They assured me that that was a lot.  Stewart, the defrosting technician told me that for some patience they had to use 16 bags, over a 2 day period, to get the same amount of stem cells in a patient.  So, apparently there's one MORE thing that I'm full of, besides the obvious.  The other thing that blew them away was when they noticed that when they collected my stem cells, it was in one day.  I was the first one that Stewart had seen this happen to.  BUT WAIT, THERE'S MORE!  We were told that they were going to collect 3 bags.  Two for now, one for the eventual relapse down the road.  Sammy said that in fact they had collected 4 bags in the single day, and that she'd never heard of that before, so I have 2 extras waiting for me down the road.

Some of you have asked if after the initial chemo treatments I was miraculously C/R, or in complete remission, why go ahead with all of this?  The cancer's gone isn't it?  In a word, no.  Being C/R means that there are no concentrations of cancer cells in the usual places.  However, it doesn't mean that there aren't some lone free ranger cancer cells out there not being caught.  Hiding.  Waiting.  With my type of cancer, and the way that it literally exploded back after the first chemo treatments, we're not taking any chances.  So Melphalan it is now, and Melphalan it will be in a couple more months.  My numbers are going down, as expected.  In a few days I should be totally neutrapenic, or without any immune system at all. The stem cells that were infused are supposed to do the job of finding and destroying any of those free range cancer cells.  The chemo weakens that cancer cells, the stem cells finish them off.  Incredible.  They will continue to monitor me for the next 3 weeks to make sure that my numbers adequately come back.  Then a month to 6 weeks off, and we're back for one more round of it.  Talking with Carol, the head nurse for the entire facility, the second time is where we can probably buy an additional 2-5 years of remission, vs. the normal 3-5 years that they were getting with only doing it one time.  Either way, I'll have 2 extra bags of stem cells waiting for me then.  I love it when a plan goes better than imaginable.

Another interesting thing about the stem cell replant process has to do with the preservative that they put them in.  The Dr thinks it smells like creamed corn.  Stewart thinks it smells like dirt.  To me it was more like tomato soup.  Anyway, it was a little weird.  They give you a hand full of mints to suck on to help cover the smell.  Plus our nurse brought in a bottle of peppermint oil for my room.  That helps too.

For those of you would wanted more specific info, there you go.  For those of you would didn't, you're probably not even going to read down this far so it wasn't a waste of you time.

We're getting closer every day.  All of my care providers are very pleased with my progress so far.  It's been just over 6 months and we are still 2-3 months ahead of schedule.  We owe a lot of that to your prayers on our behalf, and of course the many wonderful blessings that I have received from my priesthood brethren,  Then, of course, the bottom line.  The miracle of the atonement through our Heavenly Father's plan and Christ's willingness to submit.  I'm another day closer to being back with all of you.  I'm extremely anxious, but also must continue to be patient, which I'm really lousy at.

If anyone wants to come visit, the best days would be the week starting Mar 15th.  The Drs say I should be on my upswing from my lack of immunity, and as long as the visitors are healthy and have been healthy, then you're welcome.  Love you all.  Can't wait to give and receive big, non-masked, firm embrace, hugs.

With much love, appreciation, and heavenly thoughts.  KEVIN

(P.S. Please call before any visits, there are times when visitors are not allowed when they are handing out medications, NO one under the age of 16 is allowed, and anyone who has any symptoms of illness or has for the last 10 days. This includes a slightly runny nose. Every visitor MUST check in at the nurses station before visiting any patients)

When Complete Revision Re

Wednesday, March 3, 2010

Not Much To Report

Now we are in a waiting period. We are watching his numbers go down each day for the next 10 days. He is going to continue to feel pretty sick the next 10 days and not much else is going to happen.  He tries to get out for a little walk each day to keep moving but sometimes the motion makes him feel worse. The Dr.'s say this is all normal. We are just glad that the "transplant smell" isn't as bad today. Everyone thinks it smells like something different, creamed corn, fake crab, tomatoes, fishy... No matter what each person thinks it smells like they all agree it smells BAD!!!
Hillary

Tuesday, March 2, 2010

Day Zero 'Stem Cells Go In'

This morning Gilbert brought Kevin's stem cells to him with a nifty machine to 'warm' the frozen cells.
We learned from Gilbert that in the 1 day that they harvested Kevin's cells they got enough for not 3 but 4 transplants! Each bag has around 5100 cells.

Then the nurse practitioner, Sam, put them back into him through his port over about 45 minutes.
 
The bag with the pink in it is the cells mixed with a substance that preserves them.

Today is day ZERO then they start counting up. So the nurses refer to day ZERO as his 2nd Birthday. The 1st day of the rest of his life! He's going to have a lot of Birthday's by the end of the 2nd transplant :-)
He has tolerated the cells well but the chemo is still making him feel pretty lousy. The next 10 to 15 days are critical. His numbers will drop to pretty much nothing then and around day 10 the stem cells kick in and start working.  It will be a rough time but he should feel better soon and get some immunity back before they are ready to do this all again.
Hillary