Potential for recovery looks good / Angels

Knock on wood

I’m almost afraid to tell you how I am feeling this week. It seems with the last round of chemo and transplant that every time things seems to be on track some bacteria, virus or fungus comes out of nowhere, knocks me for a loop and sets me back two weeks. But that being said I am going to tempt the fates and let you know that I am feeling great. I believe this has a lot to do with my daily dosage of anti-viral medication being cut in half.

On Monday of this week I tested negative for the CMV virus and they cut my medication in half. Within 48 hrs I felt like a completely new person. Next week I will test again and if it is still negative they will discontinue the medication completely. I am sure the large dose I was taking was making me ill and that things will be even better next week when it is discontinued totally.

As for right now I am feeling better than anytime in the last seven weeks. I am getting stronger every day and my mental attitude has improved significantly. I am exercising daily and my walk is up to a mile. This might not sound like much but two weeks ago a walk from my room to the nurse’s station and back would leave me exhausted.

A couple of comments to some of my fellow patients: To Rick, who is a few weeks ahead of me in this process. Thanks for being my guide and for constantly reminding me to hang in there, that this is temporary and the sun will shine again. To Kristine, who is a few weeks behind me in the process. Same advice, hang in there, this is just temporary and you will get your life back.

More Angels among us

Over the last six months we have had so many kindnesses extended to us from words of hope and support through letters, e-mails, phone calls, comments on the blog-site and visits; to more hands on support such as taking out our garbage, running errands for us, tilling the garden and shoveling the driveway and walks this entire winter. Last Saturday was just one more example of the true charity of Christ that has been extended to us so freely by family and friends alike.

Saturday morning Lynn’s Brother Keith, his wife Cindy, daughter Stacie, son-in-law Casey and son Josh all showed up at our house to give our yard a spring cleaning. They spent the entire day weeding, trimming and spreading bark in the flower beds. The yard looks great, much better than if I had done it myself. But for those who know Keith and Cindy, this should not come as a surprise. Their care, artistry and attention to detail shows up in everything they do, from their home, to their work or to any project they tackle. Thanks again to the Smiths and the Hills for their constant love and support.

I have attached pictures to show the crew in action.

Keith

Cindy

Stacie & Casey

Josh

Untitled post

I tried really hard to come up with another road metaphor for a subject line but I am just not a creative as my wife and daughter. Sorry.

Today is stem cell transplant #2 day +40. I was released from the hospital on Sunday and it has been great to be home again. As of yesterday I am completely unplugged for the first time since transplant, no ports, pick-lines or IV’s. While a tremendous convenience for the drawing of blood and infusing medications they have also been the source of multiple infections and several hospital stays. I have two infections still hanging on, one bacterial and one viral; both are being treated with oral meds and hopefully will be cleared up very soon. The last few days have seen a significant improvement in my general health and have filled me with hope that I am truly on the road to recovery from T2.

Stem cell collection and transplant #1 did little to prepare me for what to expect from transplant #2. If anything it gave me a false sense of control over this situation and that I was somehow the rock-star of transplants. Let them fill my system with whatever drugs they may. I would be sick for a few weeks followed by a rapid recovery back to, if not full strength, at least a level of functionality and comfort approaching normal. Maybe it was God seeing a lesson that needed to be taught, or maybe it was just the new mix of chemicals but the last six weeks have been a nightmare that I always knew was a possibility but surely wasn’t going to happen to me. This whole experience has been somewhat of a blur so I thought I would just give you some of the highs and lows that stick out in my mind.

Hospital stays (2)

Not being able to eat or drink. This is hard to explain to anyone who hasn’t experienced it. You would think you could just force yourself to gag it down even if it is unpleasant. But you find yourself looking at a plate of food, even after eating nothing for five days, and knowing there is no power on earth that is going to get you to take a single bite.

Being hydrated and nourished through my pick line.

Lost 26 pounds, not a weight loss program I would recommend.

Infections, reactions to medications for infections, medications for the reactions to the medications for infections.

So weak at times you figure your body has just given up on you.

What little muscle tissue I had to begin with has atrophied away in just a few short weeks.

Dry heaves.

Times when despair wants to take over your mind and you have to fight like hell to convince yourself that this is temporary and there is hope and you will recover.

Angels disguised as nurses.

My own personal angel by my side through every bit of this ordeal: constantly offering me hope, encouragement and love.

As always, thank you for your support and prayers. They are so appreciated and have been a source of strength for Lynn and me.

I love you all, Steve

Turning A Corner

Steve is at day 35 post-transplant and he swore by day 34 he was going to turn a corner and get on with recovery! As Rick Stevens said in a comment on the last post, he does look like he is getting better. Proof in the pudding-

• His temperature is dropping and is much closer to normal and........ it has not spiked for the past 24 hours
• His kidney function tests are improving
• As Rick mentioned he is eating better - sorry he didn't offer you his leftovers Rick
• Drug rash has disappeared - Steve tells me he is just a sensitive guy! True, but does he have to be sensitive to - not in a good way- two antibiotics that can actually kill super bugs???
• He is up and walking - not running races for sure - but walking and enjoying all the original art work here at the Huntsman. Past hospitalizations have been at the University of Utah Hospital, however the BMT Unit there was full and sadly he upgraded to the Hilton. I am referring to the facilities only - both have excellent nursing staff.
  

There are still a few more hurdles but Steve is being optimistic and said to tell you all that we will be home in a few days! Of course he knows he has very little to say about that decision. This has been a long week and again we can't express to you how much your prayers have meant to us. They make such a big difference and are greatly appreciated. One of the first phone calls I made last week reporting that Steve was encountering another "bump" was to my place of employment. Dawneen was the lucky one who answered the phone and heard the strain in my voice - or maybe it was a meltdown- thanks Dawneen for putting up with the come-apart. Since that time I know many friends and family have taken their prays for Steve to a new level and we have felt the difference. THANK YOU SO MUCH. Love, Lynn

Another Bump

Well, reporting another bump is really not the post we want to be posting today, but alas we have no choice, because dad is once again in the hospital. His fever was elevated enough last night to warrant him being admitted.

His body is still struggling to fight off this darn infection. They've had to go easy on the antibiotics in order to keep his kidneys functioning correctly, and it just hasn't been enough to take care of the infection. They have now called in for back-up, and have him working with the infectious disease specialists. Hopefully they will be able to pinpoint the bug giving him trouble so they can get rid of it once and for all. Dad thinks that if they can't figure it out he wants to get that doctor from "House" on the case. So dad's sense of humor is still intact, and that's a good thing.

There is other good news to report too. He is eating and drinking better all the time, which is fabulous. The infectious disease guys are running lots of tests on him right now, and have ruled out of couple of things that would have really been trouble, so that's encouraging too.

We will keep you posted on his progress. Thanks to all of you for loving and caring about our dad. Your prayers, notes and phonecalls keep us all going.

Love,

Jenn

Bumps In The Road

"Set backs are bumps in the road, they are not the end of the roads."

Yes friends Steve has hit some bumps in the road the past few weeks.

Continuing infection at the port site - MRSA- for any of you medical types. Very hard to get rid of as it is resistant to most antibotics. The one antibiotic it does respond to (Vancomycin) has done a number on Steve's kidneys and they and not filtering as they should. We are hopeful that the kidneys will kick in soon and that there won't be any lasting effects. The medical staff say that they should do so and don't seem hugely concerned. A continuing problem is that Steve is having a difficult time eating and drinking, last week we were in clinic each day for IV fluids. They are renal dosing the antibiotic and he still gets it IV, just not as often.

Steve didn't have the energy to make a post but wanted me to let you know that he is miserable and has resorted to whining! Love that his humor is intact. Thanks for the calls and emails - I got word that the blog was of no help and to get with it and post something. We did enjoy the calls so maybe I'll quit updating.

Home Again

Steve was able to return home from the hospital on Wednesday afternoon. Jennifer was here during his hospitalization which was good for both the patient and the caregiver. Thanks to Gary and the kids for sharing her this past week. Steve is still having difficulty eating and drinking - the progress has been very slow. He does have an active infection at the central line site - cellulitis - this will be a slow healing process as well. We continue to visit the clinic at the Huntsman often for lab work and IV infusions as he is not able to take in enough fluids on his own yet. We are giving IV antibiotics at home and hoping to eradicate those nasty germs soon!

We would both like to thank the staff at the University of Utah Hospital they took good care of Steve. Below is a picture of Suzy who happened to be his nurse for four days in a row. As you can see she was a ray of sunshine - great sense of humor and a good nurse to boot. Bob gets the award for the consummate night nurse, he gets in and out quickly, doing his work efficiently allowing his patients the rest they need. Thanks for the follow up call Bob. Elma was his nurse again and he finds her very competent and oh so kind. Thanks to all and please don't take it personal as we hope we don't have to visit you again!!

Suzy getting Steve ready to go home.

Again thanks to our family and friends for your love, support, prayers and for participating in the fast this past Sunday. We hope you all have a wonderful Easter with your families.

Thanks for the Prayers

Once upon a time, dad had a blog. Now it seems to belong to mom and the girls. This is Jennifer, Steve's other daughter. Thank you everyone for your fasting and prayers, dad has responded well to the antibiotics and his white blood cell count is going up every day. He is eating and drinking on his own again, and is hoping to be home soon.

He is managing to maintain his usual sense of humor, joking and giving the nurses and aids a hard time. He has been lucky the last few days to have had very good nurses.

(Yes Rick, we all like Suzy!)

We will let you all know as soon as he gets home, and certainly when he is cleared to have visitors. Thank you again for your prayers, blog comments, email, and phone calls.

You are the greatest friends and family in the world.

Dad loves you all.

-Jenn

Fast for Steve 4/5/09

Dear Family and Friends, this is Kelly (Steve's daughter) for those of you who don't know me... I am taking over dad's blog for a bit to update everyone on what is happening with his treatment at the moment.

My dad is currently undergoing his last round of chemotherapy at the Huntsman Cancer Institute this week, and he and my mom have been staying down there for the past few days. Last night he was hospitalized with what they believe to be a minor port infection. This kind of infection is fairly common - but still a bit unnerving as he has little immune system to speak of at the moment. Mom, Jenn and I (and our families) are going to be fasting/praying for him tomorrow (April 5) and would love it if you would join us. Our prayer is that his body will respond well to the antibiotics they have him on, and his engraftment process will move along quickly so that he can go home soon. The doctors and nurses are quite confident that they will be able to handle this....but as my mom put it this morning when I spoke with her "Doctors and nurses are human, so let's get God involved". :)

All our love to each of you - we are blessed with such wonderful family and friends, and hope all is well with you! :)

- Kelly

Transplant II

Raj preparing to defrost Steve's stem cells-

Andrea, Steve's P.A., Amelia, one of Steve's favorite nurses and the man himself!

The past several days have been eventful and this round of chemotherapy introduced us to new friends - referring back to Steve's slogan "Chemo Is My Friend." So now on board are Carmustine, Gemcitabine (cousins maybe) and old friends, Bortezomib, Melphalan and good old Dexamethasone. Yes Dex is a steroid as well as the only oral medication in the bunch and we are told it helps create a hostile environment for the cancer cells. Following the infusion of these friendly foes Steve had transplant number two on Friday. Above you will see Raj and the container that houses Steve's stem cells as they wait to return home. Hopefully the ten million or so that are left will have to wait a very long time to be utilized.


Steve your are truly the BEST!! Yes, Sarah the best! (Sorry an inside family story-)

A shout out to my husband, the gold standard of how to be a patient. Grace under pressure comes to mind. He very rarely, if ever whines - whining has always been something Steve finds intolerable, right girls?? Always says thank you for any small act of service or kindness shown. I will never be able to match his amazing demeanor if the tables are turned. I do realize this is not news to those who know us well. I have cherished the alone time we have shared and hope Steve feels the same. We are closing in on the last phase and section of the road -- so as Judy Cooley said - Go show cancer what metal you are made of!

Many thanks!

A huge thanks to all who continue to check in and send words of encouragement . We appreciate your love, support and especially your prayers.

Good News

Last Friday Lynn and I met with Dr. Zangari to go over my test results to see if I was healthy enough to proceed with Transplant II and to find out how effective my treatment to date has been in killing off the Myeloma. I am happy to say that the news was positive on both accounts. My heart, lungs, kidneys and blood are all in good shape and as a result I started chemo yesterday (5 hour + infusion) and so far the side effects have been minimal. I have today and tomorrow off, more chemo on Thursday and Transplant II on Friday.

As for my Myeloma markers, my PET scan showed no lytic bone lesions (excellent) and my bone marrow biopsy showed that my Kappa Qnt Free Light Chains and my Immunoglobulin G Serum have both dropped faster than my 401K and are hovering just above the level that is considered complete remission (very good). I'm sure that lytic lesions, Kappa Free Light Chains and Immunoglobulin G Serum mean about as much to most of you as they do to me, but what really counts is that I am very close to being in complete remission and there is every reason to believe this last round of treatment will get me there.

Thanks again for all of your prayers, love and support.

Steve

Transplant #2

Well it looks like my vacation is about to come to an end. I have my schedule for Transplant #2 (T2) and it looks something like this:

March 16-19 Baseline Testing
This is a series of tests that are done prior to each round of chemo and serves two purposes. The first is to assess my general health (heart, lungs, kidney, etc.) and determine if I am ready for T2. The second purpose of the tests is to evaluate my Myeloma markers which will tell us how effective the treatments to date have been in putting my cancer into remission. Lynn and I have a vested interest in the answer to this question and will be looking forward to our next appointment with Dr. Zangari.

March 20
Appointment with Dr. Zangari to go over the test results and get his official OK to proceed with T2.

I will also get a new catheter installed to support infusions, blood draws, etc...

March 23-26
Series of chemical infusions.

March 27
Stem Cell Transplant #2

March 28-?
Approximately 8 week recovery period after which life can get back to normal.

This would complete my treatment protocol and if all goes well, and there is no reason to believe it won’t, I will be in complete remission and this beast won’t show its’ ugly face again for another 10 to 20 years.

As to my current condition, I have recovered well from the first transplant in January and except for a few minor symptoms that continue to linger on I am feeling fine. In fact, a few weeks ago I was cleared by my Dr. to go back to work part-time until the next transplant if I desired with a promise that I would use good sense and not overdue. As it turned out work did have a short term project that I could work on and I have been going in for half days. I don’t know how much good it has been to the Company but it has done a world of good for me and my mental health. It was good to have something to do each day and to see my friends at work that I have really missed over the last few months. This along with being able to go to dinner with friends & family, attending church, the visit from Jennifer and Kelly, and the Wednesday lunches with my friends that go back to my youth have all helped me maintain a positive attitude and get ready for this last round of treatment. Thanks to you all.

Steve

Laughter, the Best Medicine

Kelly and I are here visiting this weekend and thought we'd take over the blog for a bit. We all went to church together today and were reminded in one of the lessons about the importance of humor in dealing with adversity. We have found this to be very true and want to share some of our favorite comments people have made about dad's cancer.

Children say the darndest things-...

Annie Grace (Jenn's youngest) - After grandpa had been sitting in the passenger seat of Jenn and Gary's car... "Mom, don't sit in that seat, you might get the cancer." Grandpa and Grandma love how she calls it 'the cancer.'

Lia (Kelly's oldest) - After months of praying for grandpa's health she sighed and said, "Isn't he better yet?" (Our cousin Q has mentioned similar comments coming from her kids. Would that we all had such simple faith.)

Annie Grace again - While taking his hand on a walk... "Grandpa, I love you even though you have the cancer."

Bridgette (the young girl next door) - After Grandma Lynn commented on Bridgette's cute new haircut, "I gave my hair to 'Locks of Love' and I've been thinking that Steve might get it!"

(Speaking of 'Locks of Love' here is one of our favorite Annie Grace comments of all time. Her older sister Lauren had been growing out her hair for 'Locks of Love' and we were explaining to Annie about how they use that hair to make wigs for people who have lost theirs due to an illness. Gary (her naturally bald daddy) was teasing the kids about what a great wig his hair would make and she replied, "But daddy, you wouldn't even be able to see it on the shelf!")

Riley (Kelly's Niece) - Following her dad's explanation of why people fast..."Oh, so when I'm old enough, I can fast for people like Lia's grandpa!"


Adults get in on the action...

Lynn - This comment from mom about made our Uncle Roy fall off his chair with shock and uncertain laughter. Dad was saying how no one is guaranteed tomorrow, and that you never know, he might even outlive mom. To which mom replied, "Yes, but that wouldn't be the smart way to bet!"

Charmaine (Jenn's mother in law) - Soon after dad was diagnosed Charmaine saw Steve and Lynn at a wedding. She knew of his diagnosis, but didn't know if it was too soon to approach them about it. She told me later on that she chose not to say anything yet but instead turned to him and gave him a 'strong fist.' We think that is pretty adorable. Just picture an 80 year old woman raising her fist in tribute to my dad in the middle of a wedding reception. What a character!

Scott (dad's good friend from work) - Dad went to lunch with a group of people from work the other day and Scott said to him, "Can I ask you a personal question?" Dad was curious what was coming next because you never know where someone is going with a question like that, but told him, "Sure." Scott then said, "Can I rub your head?" And it's understandable isn't it? Dad's head is pretty cool right now.

Dad weighs in...

Dad is seriously one of the funniest guys I know, and has been an example to the rest of us when it comes to approaching his illness with humor.

Since the diagnosis, mom has been trying so hard to get dad to take his vitamins and watch what he eats etc. His response? "Oh Lynn, don't you think that's like shutting the barn door once the horse is already out?" Good luck mom.

This is my personal favorite. I can't believe dad had such a great attitude right out of the gate. Mom and Dad had just come out of the doctor's office after having learned of his cancer. They got in the car and really, what do you even say to each other at this point? Dad came up with the following, "Well, thank heavens I didn't waste a lot of time exercising!" Honestly, you have to love him.

We've had a great time visiting. Thanks for the meals, the love, the skiing, and the late night chats!

Jenn and Kelly

Update

It has been a while since my last post so I thought an update on how things are going would be in order. The good news is that there is not much to tell. I'm getting stronger every day and almost all of the side effects of the chemotherapy are gone. Physically I am about ready for one more round of chemo/stem cell transplant, now I just have to work on gearing myself up for it mentally.

I am expecting a detailed schedule from the clinic any day now, but it looks like about the middle of March for this last round of treatment.

The best news of the day is that Jennifer and Kelly are flying in tomorrow for a weekend visit and a day of skiing. The skiers this time will just be the girls and Lynn. For some reason my PA thought it would be a bad idea for me to go this year. I really couldn't argue with her as I get winded walking up the stairs. I can imagine what a disaster I would be on the slopes.

Steve

"Snow" Angels Among Us

The man in red caught red handed - thank you!

We have had more than our share of "snow angels" shoveling and snow blowing our driveway and side walks this winter. I know that Brent has no idea I took his picture today, this is not the first time I've seen him performing this act of service. He keeps good company as we have seen others doing the same. I realize we have not caught everyone in the act but some we have - so we want to give a shout out and thanks to Scott, Geri, Scott (yes there are two Scott's) Andy, Levi, John, Ken, Eric and Doug. Those of you who are early birds and know when we aren't home I am sorry your names are not included on this list, just know we appreciate your kindness.

In an earlier post Steve called me his caregiver but given his last post I will sign off as the warden!

Getting out of Jail

Today I had my post transplant visit with Dr. Zangari. All of my lab work shows a strong recovery from the transplant and as a result he cleared me for visitors, going out in public (with some cautions), and limited moderate exercise (Lynn says I have to learn what this means. I tend to be a little pushy and impatient. I think if I can walk a mile one day I should be able to do a mile and a half the next, two miles the third and so on. This approach has gotten me in trouble several times in the past so I am committed that this time I will take it slow and easy).

When I asked Dr. Zangari about any specific precautions or restrictions he said “Avoid sick people, eat only cooked foods and get yourself as healthy as possible so we can do this again in March”. So that is exactly what I plan on doing.

Also, if I don’t post as often over the next month, don’t be concerned. It means that I am working hard at eating, sleeping and exercising (moderately), and getting my strength back as the Dr. prescribed. If something of any significance happens I will let you know. Otherwise I can’t see a post just to let you know how my eating, sleeping and exercising is going.

I love you all and thanks again for all your support.

Home again

Today is Sunday January 25, 2009. I was released from the Hospital on Friday afternoon after it was determined that my spike in temperature was not due to an infection but probably due to the engraftment process or possibly a reaction to the Neulasta shot I received on Monday. In any case it was all good news and Lynn and I were allowed to return home on Friday night. Just coming home made me feel like I was half way to recovery.

On Saturday morning we were back at the Huntsman for lab work and a follow up visit. When the PA showed up with my lab results the first words out of her mouth were “You are the rock-star of transplants”. I am almost positive that this is the first time in my life that my name and the word rock-star have ever appeared in the same sentence. She then went through all the test results which showed that I was fully engrafted and no longer neutropenic. We were extremely happy with the results, but the truth is, all I really heard was that someone had called me a rock-star.

The rock-star comment, along with being called a gangster, are two of the nicest compliments I have received during this process. The gangster comment came from the church Christmas party (which I was unable to attend due to being restricted to the house at the time). The Ward made a large card for me and it was signed by the members with various greetings and words of encouragement. Of particular note was one young man who wrote “You are a gangster for going through this. Hope you get well. Prayers and thoughts are with you”. Who would have thought that being called a rock-star and a gangster would lift the spirits of an old man going through cancer treatment, but they have.

Anyway, the bottom line is that all is going well. They said I could expect another week of lingering side-effects from the transplant and then I should feel pretty good for a few weeks while my body heals and gets ready for transplant #2.

The question is........

The question is ............. Is this engraftment or an infection???



After several episodes of chills and spikes in his temperature Steve landed in the University of Utah Hospital. Apparently statistics show that 80% are hospitalized during this treatment - the other 20% of course was our goal.

Love that this is an outpatient program - Steve is a huge fan and like any sane individual avoids hospitalization like the plague.

We are hopeful this will be a very short stay as his lab work and vital signs are encouraging looking more like the engraftment process. See Steve's post on January 10th for a tutorial about engraftment if you missed it.

I want to give a heartfelt thanks to all who have included us in your prayers, it is appreciated greatly and means so much. We are sustained by your kindness shown in many ways - calls, cards, books, emails, text messages, quilts, sitters, soups, kitchen repair with a smile, breads, drawings from the grand kids, the hats, visits, comments on the blog - the snow removal service - so glad you got a break recently - we know some amazingly nice people! Will post when Steve is given the green light for visitors.

Transplant

Eating ice and enjoying every minute

Transplant

On Tuesday I had my stem cell transplant as scheduled. All in all it was pretty anti-climatic. My frozen cells came in four bags, each of which were thawed out in a bath of warm water, hooked up to my port and fed back into my system. The actual transplant took less than an hour. It is a low risk procedure with the only concern during transplant being a possible reaction to the preservative (DMSO) used in the storage of the stem cells. Fortunately, I didn't have any reaction. However, there was one unpleasant characteristic I couldn't avoid. It smells. Or rather I smelled. The DMSO passes from your system rather quickly and is expelled through the respiratory system and it seems from your pores as well. In any case it is a smell a little like corn chowder, which isn't too bad until it becomes very strong, and then it is pretty hard to take. I couldn't smell it on myself, which they say is common. Lynn, on the other hand was stuck in a closed car on the ride home with me oozing a less than pleasant odor. Just one more of the many perks of being a caregiver.

While I am on the subject of unpleasantness, let me say something about the chemo leading up to transplant. The chemical used in this treatment has a number of unpleasant side effects, one of which is the possibility of open sores or cankers in the mouth and esophagus. To minimize the chances of this occurring they have you keep your mouth full of ice for 20 minutes prior to the infusion, during the infusion and for 20 minutes after the infusion. The idea being that it shrinks the surface capillaries of the mouth and throat and doesn't let the chemo in to do its damage. Now this didn't sound too bad until I actually had to do it. Lynn, who likes to chew ice would probably have no trouble at all. I, on the other hand don't even use ice in my drinks. For me this was pure torture and I have never been so cold in my life. I was completely wrapped in warm blankets, a ski cap on my head, a hooded sweatshirt over that and the quilt from the grand kids on my lap and was still chilled from head to to toe. However, the thought of a mouth full of cankers kept me motivated and I hung in there until the bitter end. I know I am whining about pretty noise level stuff, but the reality is that everything has gone so well and I really needed something to complain about. The good news is that I have only had one small canker on my lip so I guess it was all worth it.

I am now in the fourth day following transplant and doing well. They tell me the next five days is when I can expect to feel my worst. However the "worst" varies with each individual, so we will just take it one day at a time and deal with whatever the "worst" is in my case.

New schedule

After several weeks of working on getting my strength back and letting my body heal from the first round of chemo, I am back in active treatment. Yesterday I had my first round of chemo in preparation for my stem cell transplant. The schedule for the next few weeks is as follows:

· Friday 1/9/09 - Chemo infusion#1
· Monday 1/12/09 - Chemo infusion #2
· Tuesday 1/13/09 – Stem cell transplant
· Wednesday 1/14/09 - ?? Recovery

What I have left out of this seemingly simple little schedule is the extensive list of oral medications and injections that go along with the chemical infusions. I won’t bore you with the details but let’s just say I am surprised that I don’t glow in the dark.

The recovery portion of the stem cell transplant has two critical milestones associated with it. The first is the recovery of my immune system. After this round of chemo I will be neutropenic (no immune system to speak of) as I was with the first round, however, this round of chemo is a much higher dose than the previous one so the stem cells in my marrow are also destroyed along with the white cells in my blood. That is where the second critical milestone comes in. It is called engraftment. Engraftment is when the new stem cells are taken into the bone marrow and begin making new cells on their own. To be “engrafted” is when new cells are being created at a specified level for three consecutive days. Reaching both milestones, no longer neutropenic and fully engrafted, should take about 8 to 12 days. Then it is just a matter of getting me healthy enough to do it again in about eight weeks.

One concern that came to my mind when I first saw this schedule was how quickly the stem cell transplant followed the last chemical infusion. With the high dose chemo going into my system only the day before, what would prevent the stems cells from being destroyed along with everything else? The answer is that even though it is a very high dose of chemo it has very short half life. So as I understand it the chemo does its job quickly and then dissipates from your system rapidly, the end result being a reduced time between killing off the bad guys and bringing in the good guys.

As you probably have already guessed this means we are back in isolation for at least the next two to three weeks. I will let you know when I get the OK from the Doctor to have visitors again.

Steve

My Caregiver

This is a post that is way past due. I have procrastinated writing it because I knew how difficult it would be for me to adequately express my feelings for Lynn and what she means to me, especially at this time. For over forty years we have traveled the road of life together, sharing all the joys and sorrows that make up this mortal existence. Through it all Lynn has been my rock, my best friend and the love of my life. She is a constant example of love, service and charity in every aspect of her life; at work, at church, and specifically as a daughter, wife, mother and grandmother. But I have to say that over the last few months she has really out done herself.

The cancer patient may be the one getting poked, prodded and pumped full of dry cleaning fluid, but it is the Caregiver who is the real hero in this process. My commitment is easy. Dr. Z. “You can go through treatment and possibly live ten or more years, or you can die, the choice is yours”. Let’s see, let me think about this for awhile. The Caregiver, on the other hand is a volunteer job with no pay and terrible benefits. But Lynn, like always, is there for all of us when she is needed.

To a cancer patient your Caregiver is the most important person in your world (not that Lynn wasn’t already, but the world has changed significantly for us in the last six months). In our guidebook provided by the Huntsman it states “A transplant is not possible without the support of Caregivers.” I know this is true because without Lynn I would be toast. As my Caregiver, she provides the following:

24/7 Nurse - taking care of my central line catheter, giving me daily injections, making sure I stay hydrated, tracking my medications, and keeping medical records.

Personal Nutritionist - making sure everything I eat is on the approved list and is properly prepared.

Guardian Angel - protecting me from germs by disinfecting the house, keeping away visitors who are ill, and making sure I am washing my hands properly.

Chauffer - making countless trips to the Huntsman Center.

Emotional Support – Of all the things Lynn does for me this is probably the most important. I’m finding this to be an emotional roller coaster and having her there by my side gives me tremendous comfort and peace.

While Lynn is certainly my Primary Caregiver there are a lot of people who Lynn and I consider Caregivers as well. First of all, our children and their families followed closely by our extended families and our friends. Your gifts, cards, letters, emails, comments on the blog, phone calls and visits give us strength and lift our spirits. Thank you so much for your support, it means so much to us just knowing you are there.

Lynn being a Grandma

Skiing with the girls

Lap quilt made for me by Jennifer and Kelly with inputs from all 9 grandkids

Kelly's visit

As I have previously posted, I am in my recovery period between the first and second rounds of chemo. A good time for visitors, so Kelly flew in from Wisconsin to spend a few days with us, as coming home for Christmas with the family was not going to be an option this year. It was great to have her with us for a few days. She cooked for us, painted our front window for Christmas and generally lifted our spirits just by being here. A special thanks to Tyler for taking on all 3 kids by himself so Kelly could spend a few days with us.

As it turned out Jennifer and her family were here at the same time as Kelly. Their original plan was to be here at Christmas, however, Gary’s sister Maren passed away a few days before Kelly’s visit and the whole family came down for the funeral. Maren was 53 years old and had downs syndrome. She was a real sweetheart and will be missed by all of us. We didn’t get a lot of time with Jennifer and family as their visit was short and of course most of their time was spent with Gary’s family at this time of grief. However, they were able to spend one afternoon with us and I have posted a few pictures of their visit as well.

Right now I am feeling pretty good. My immune system is almost back to normal and my energy level is getting better every day. The second round of chemo starts the first of the year and the stem cell transplant takes place on the fifth day after chemo starts. Until then it is just rest, relax and recover.

Kelly and the Dad.

Making a chicken pot pie. Almost too pretty to eat.

Painting the front window

Making cookies with Jennifer's kids.

Jennifer making the frosting.

Gary and Steve. Two bald men, one from genetics, one from chemo.

Wearing the Mask

One of the conditions of my new found freedom is that I wear a mask anytime I am out in a crowd of people. So this week I have ventured out a little making a few trips to the grocery store and one to the bookstore. I am quite a site walking into a store wearing a ski cap (required apparel in the winter with a bald head), sunglasses, and a surgical mask. I believe that if my intent was to rob the place this would be the perfect disguise. First of all, no one would question my presence, and second, everyone is so worried about being politically correct that I would be walking out the door with the cash while they were still considering what the correct response is to someone wearing a surgical mask in a public place.

Generally the response is a quick double-take and then pretending you are invisible. I have thought that I might start carrying around a five dollar bill to give to the first person that acknowledges the mask. “Yo dude, what’s with the mask?” A quick explanation and “thanks for asking” followed by the fiver.

However, before I could put my five dollar plan into action I finally got a response, and of course you know it would be from a child. I had just turned down the aisle at the grocery store and was approaching a mother with two small children when the oldest, a little girl about five years old, said “Look mom it’s a Doctor”. The mother got a slightly embarrassed look on her face but said nothing. The child, not ready to give up on the subject, looked at her mom again and asked; “Why is there a Doctor in the store?” This time the mother looked at me with a look that was part apologetic and part I don’t know what to say. So I said to the little girl “Sweetheart, I’m not a Doctor. I have just been a kind of sick lately and I need to wear this mask for a little while.” This answer seemed to satisfy her as she then told me they were buying stuff at the store to go home and make a gingerbread house. She then started to walk off with her mother but stopped after a few steps, turned around and said “Goodbye, I hope you feel better soon”. Completely made my day, maybe even my whole week.

Update

Last Thursday and Friday I was able to complete my stem cell collection. Almost 22 million cells in 2 days. Not a record, some showoff got 30 million in one day, but I was happy to get it done as quickly as I did.

I'm told that my job for the next few weeks is to eat, sleep, exercise moderately, and build up my immune system so thy can knock it down again with the next round of chemo when I start stem cell transplant the week after Christmas. I guess the philosophy is to get me strong enough so they can hit me hard without doing too much damage to my body in the process.

Anyway, the next few weeks should be the easiest of the whole program and I am looking forward to the break in active treatment.

Steve

Collection Day

Each day we have been going into the Huntsman for lab-work to determine if the stem cell concentration in my blood is high enough to begin collection. The metric used is called a CD34 test and it has to be at a 10 for a productive collection. On Wednesday it was at 8 and we were a little disappointed that it was coming up so slowly. However, the shot they had given me that stimulates the release of stem cells from the marrow really kicked in overnight, because on Thursday morning my CD34 count was at 49. So today was my first day of collection and it went very well. The process involves hooking me up to a machine that becomes part of my circulatory system for about five hours. Blood is pumped out of my body, into the machine that separates out the stem cells through a centrifugal process, and then returns the rest to me. We won’t know how many cells were actually collected today until tomorrow morning, but with my high CD34 count they were optimistic that we can complete collection (20 million cells) in 2 to 3 days.

Going home

My white cell count is on the rebound so Wednesday we were cleared to go home. What a relief it is to be able to come home at night. Lynn and I were getting a touch of cabin fever being locked up in the hotel room for the last week. Upon our return we picked up our mail from the neighbors and there was a card from everyone at work that really lifted my spirits. I have always said the greatest thing about working where I do is the people I get to work with. You guys are the best and I really miss seeing your shining faces very day. Thanks for your support.

Bald is Beautiful

One of the things I was aware of when I started this adventure is that the effects of chemo will vary with every individual. Some get very ill, others hardly at all; some lose their hair, others do not. Since I completed my first round of chemo over a week ago I thought I was home free in regards to the hair situation. What I have learned since is that it takes a week or two for the damaged hair follicles to start letting go of your hair, which is why yesterday my hair started falling out in clumps. The worn out mop head was not exactly the style I was looking for so I recruited my next door neighbor Geri, along with her handy hair clippers, to come over and finish the job that the chemo has started. I figured at the rate I was losing hair it would only be about a week before it was all gone anyway and frankly it was making a mess. It was like having a diseased cat with a shedding problem in the house.

I have combed my hair the same way for the last forty years and my girls have always said I should get out of my rut and try something different. Well girls, what do you think?

Feelin' the Love

Kelly's children are very busy helping the

postal service gear up for the holiday rush. Our

mailbox is full of fun mail. Thanks kids.

From sweet Lia - hoping Grandpa feels

better soon! She is quite the artist and we

have stacks of pictures that are priceless.

From Jaxon a Ninja Turtle Man.

He has mad drawing skills for such a youngster.

The only type of flowers allowed for Grandpa
Steve at this time. Thanks Lia.

Steve's bulletin board is way too small.

This has something from each grand

child - love the arms giving hugs.

Thanks to you all for making Grandpa

feel the love.

One hour and thirty minutes...

Jennifer was able to come the clinic for one of
Steve's appointments - even though it was only
for one hour and thirty minutes we loved having
her with us.

Reportedly Jennifer locked herself in the study
for two and a half days recently and wrote fifty

stories/memories for her Dad. We read one a day

per her request - this should take us through

transplant number one. Thanks Jenn!

Air Hugs For Grandpa

Jennifer and four of her children were able to

stop by for a short visit - who is the masked

man in the background? Doulbe click on the

photo to find out.

Tanner & Ethan being boys. Jenn, Annie and Lauren give

Grandpa Steve air hugs!

Happy Thanksgiving

Over the years there have been many memorable Thanksgiving days, mostly the traditional variety spent with family at our home or the home of a close relative. There have also been a few non-traditional Turkey days, several ski trips and one unforgetable Thanksgiving dinner at the Hard Rock Cafe in Sydney, Austrailia. But regardless of where we were, it always involved at least part of our extended family, that is, until today. Our isolation has certainly made this a memorable Thanksgiving day (although not one I would wish to repeat). However, it has caused me to stop and think about our families and how important they are in enriching our lives. There is an old movie, I think it was called "Parenthood" where someone was bemoaning having children and all the problems they bring into our lives. Someone else then points out that family's are like a carnival and having children is like chosing to ride the roller coaster rather than the merry-go-round. Sure the merry-go-round is safer, but what is the fun in that. So all of you that have the opportunity to spend this day with your family take time to hug them all, tell them that you love them and be thankful for the richness their diversity brings to your life.

Condition update - All is going well and as expected. I am at my lowest (immunity wise) for the next few days so we are holed up in the hotel until that improves. It is not like being home but it sure beats being in the hospital. We had Marie Callendars frozen Turkey dinners for our Thanksgiving meal and they were really quite good. I'm not suggesting them for next year, but they were better than I had anticipated.

Goodbye to the Chemo Pack

What a handsome dog -doesn't he look GREAT!

Not all goodbyes are sad. Steve was more than happy to part with the back pack, the bags with the toxic cocktail and , those pesky tubes. More than once he got up from the chair without thinking to take the pack - of course he didn't get far without being reminded by his new best friend that he also needed to come along. Happy to report that there has been no puking, nausea only, which has been fairly well managed with the medications. Yeah for drugs in this case. Tired is how Steve finds himself and is napping like an old man! He did ask me to make this post and said he did not have to approve it before I published it. Again thanks for the calls, emails and comments they are so helpful as we feel the pain of isolation right now. (Not that we aren't fascinating company). Our daughter Jennifer and her family are in Utah and we are not able to be with them to carve the turkey this year - look forward to sharing many more in the future with all of our loved ones. Have a great Thanksgiving Holiday - we are thankful for many things and plan to celebrate by ourselves, a Thanksgiving we won't soon forget.

Chemo is my friend

CHEMO IS MY FRIEND, the right attitude, thanks Stacy. CHEMO, THE ULTIMATE DEFINITION OF TOUGH LOVE, thanks Kevin, from a man who knows. THE ENEMY OF MY ENEMY IS MY ALLY, the military analogy, from a nurse at Huntsman. I like the military analogy because it really fits what is going on here. We are at war with an enemy we must defeat and there is only one exit strategy. No negotiated peace, no white flags or unconditional surrender, complete annihilation is the definition of victory.

The first step in the process (or at the risk of beating this metaphor to death) tactical operation is stem cell collection. This is comprised of four days of continuous chemo infusion. Similar to someone on portable oxygen only my tank is filled with a chemical cocktail and my tubing goes directly into my bloodstream rather than to my respiratory tract. I have just finished day two and everything is going just fine, a little nausea but nothing of any consequence. Every patient is different but they say whatever the side effects are they are usually the worst around days four through six. It’s always nice to have something to look forward to, don’t you think?

Following this short stretch of chemo I will receive a shot called Neulasta. This is to stimulate my marrow to release stem cells into my bloodstream increasing the concentration of cells to help facilitate the collection process. This is followed by stem cell collection which takes from two to ten days to get the optimum cells they want for transplant (approximately 20 million). But I am getting way ahead of myself here. My plan is TO TAKE THIS ONE DAY AT A TIME, to think about this whole process is just too overwhelming and can really get you down. The old saying I learned as a child is trite but true. ”Inch by inch life’s a cinch, but yard by yard it’s kind of hard”. So I think I will stop right here and keep you posted as events unfold.

Steve

PS Thanks for all of your kind comments, they have meant so much to Lynn and me and have done wonders to lift our spirits.

The Huntsman Crew

Here is a photo of the Huntsman Cancer Institute for those of you who have not had the pleasure of eating at The Point - the fun place to be at the Institute - come join us for lunch some day.



We want you to meet some of Steve's new friends at the Huntsman. They have all been great to work with.
Dr. Maurizio Zangari is Italian and such an interesting man - he comes into the room he takes your hand places his hands under and over your hand and flashes a warm smile. When he leaves the room he again caresses your hand and does a little bow. Really can't he be in charge of teaching a few doctors we have met how to be people!





Here is Katrina Royall R.N.- the ultimate warm, always pleasant, patient nurse. She answers a million questions and works very hard to make this ridiculously scary time bearable. Nurses are the front line that make such a huge difference - no bias on my part of course.





Andrea Noordewier, P.A. As it turns out we see Andrea more often than anyone in the clinic right now. She has been a delight and is relatively new to her profession and the Huntsman. Receiving her P.A. from George Washington University in Washington DC endeared her to us right away. Even though she is a greenie we like her spunk and willingness to ferret out answers to our never ending questions.






Check out their website if you would like more information about the program. http://www.fightmyeloma.org/

Day One

Steve talking with his sister Carolyn on day one of the first round of Chemotherapy. Notice the black back pack on the end table - yes - the cocktail being pumped into him as he visits on the phone. We had a long day at the Huntsman with a few glitches that slowed the process down for a few hours, but all is well and we are home. Thanks to all who have called, emailed and sent text messages. We appreciate your love and support. The caretaker signing off.