Update and Quiz

Chemotherapy is generally not a subject that brings grins and giggles into a conversation. However, Lynn and I thought it would be nice to provide some fun and interesting facts about our experience with chemotherapy. At least we hope you find them fun and interesting. We put them in the form of questions and answers to increase the dramatic effect.

1) How many miles did Lynn and Steve put on the Subaru driving to and from the Huntsman Center from last November until now?

2) How many round trips would that be?

3) How many times a day would Lynn tell Steve that he is not staying hydrated and needs to drink more, and that means water, skim milk or juice; not Mountain Dew?

4) How much has this entire program cost to date?

5) How many rolls of Press-n-Seal did Steve go through and what purpose did it serve?

6) What is gray and soft, and never left Steve’s side day and night for six months? This sounds like Lynn if it wasn’t for Miss Clairol, but that is not the answer I am looking for.

7) What is the cost of one bag of Melphalin, one of the high dose chemicals Steve took multiple times during chemotherapy? One bag is about 4 ounces.

8) What is Steve’s favorite snack food that he hasn’t eaten for almost a year because his altered sense of taste makes it repulsive to him?

9) What tip did our Dentist give Steve prior to the start of treatment which turned out to be the second best tip we received next to the Press-n-Seal?

10) What do a cute young blonde and an ex Army Ranger have in common that is associated with Steve’s treatment?

Answers at the end of this post.

Medical Update

Following my six months of high dose chemotherapy I was given a few months to recuperate and then I started my maintenance chemo that I take in twelve, twenty eight day cycles over the next year. The first cycle was kind of rough as I had an allergic reaction to one of the drugs and broke out in a rash, crashed big time every other week as I came off the Dexamethasone (one of the three chemo drugs I take) and generally felt like dirt the whole cycle.

For the second cycle some of the dosages were reduced and the schedule for taking them was altered slightly. The second cycle went much better, no rash, minimal crashing and I felt pretty good most of the time.

I am now on day five of cycle #3 and so far all is going well. At the end of cycle 3 (late October) I will have my “Myeloma Markers” tested and meet with the Dr. to see how well we are doing at killing the beast. Results will be posted

Steve


1) 3,823 miles

2) 78 round trips

3) Lynn says five or six. I’d say it was more like ten to fifteen. I guess it all depends on your perspective.

4) I’m not telling, but I’m sure it exceeds the Gross National Product of a number of small countries.

5) Four. It was used to cover my port (access catheter) when I showered. Seals great against the water and unlike tape can be removed without taking any skin with it. One of the best tips we received at the beginning of treatment.

6) Hand knit hat from a neighbor that kept my bald head warm both day and night. Thanks Chris.

7) Almost $16,000

8) Popcorn

9) Buy an electric toothbrush for those days when you only have enough energy to hold it to your mouth, and there were many.

10) They were two of the great nurses that took such good care of Steve at the University Hospital

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More of the Best & An Update

Again we were blessed to have more family visit this summer. The Kings traveled to Utah for a wedding, Tyler's younger sister Katie was married and we were lucky enough to have them stay with us. Check out Kelly's blog for some beautiful pictures of Katie and Scott. Steve had not seen Tyler and the kids for a year, way too long! It was so fun to be with them and spend a little time catching up, staying up... oh so late and watching the kids do what they do best - PLAY.

When everyone left I remembered Steve's father asking his mother to - not wash away the fingerprints on the glass door - after their grandchildren had visited. I totally understand and miss the sound of their bare feet running across the tiled floor and have left the playroom as they left it. Pretty clean actually - but I can't make myself change a thing. And.... yes Tyler and Kelly.... miss you too!

For those of you who do not have grandchildren yet....hang on as it is simply the best.

Kelly, Jaxon, Lia, Maggie & Tyler
Lunch at the Oaks in Ogden Canyon

Lia and Maggie ready to go and waiting and willing to smile for Grandma


Lia playing softball with Grandpa Steve


Jaxon in great form

Maggie and Steve

Is it just me or is that bat bigger than Maggie?


Swimming with the Hill cousins

Maggie, Cannon, Cooper, Jaxon, Lia

Casey keeping track of the boys

Maggie, Kelly and Stacie

Lia

Jaxon

The pictures below are of a BBQ we had at our home while the Kings were here. We were fortunate enough to have several family members join us for an evening we won't soon forget.

Steve manning the BBQ - his marinated chicken rocked

Uncle Reed, Aunt Valoy is hiding behind him, Ann Burt, Steve, Natalie and Cortney Petersen

Below in the white shirts are Valoy Smith and Nancy Lewis

In the background you see Tyler, and Jim Bergen

Keith & Cindy Smith, Steve Petersen, Steve, Kelly & Nancy with camera

When you have lived this long - your family is more then willing to hear what you have to say!

Reed M. Smith

Reed and Valoy traveled a ridiculous distance in a very short time in order to be here for this family gathering. They were in California at my cousin's funeral the day before the event. Their daughters, Ann and Nancy were also at the funeral and drove them to our home- many thanks to you all for making the effort to be here with us. After dinner Reed spent time sharing his memories of growing up in Holbrook, Idaho as well as time spent in Mobile, Alabama with his mother's family. I was fortunate enough to sit next to Valoy and hear some additional tidbits as the tales flew. Reed and Valoy have always been a special aunt and uncle to our family and it was a day that ended all to soon. Words can't express how much it meant to have Reed, Valoy and so many family members here to create more memories - love you all!

On Reed's left you see Cindy Bergen, his daughter, holding a recording device - someday soon I hope to send out a CD to each family - since I am technically challenged that my take awhile. I want to give a shout out to Cortney Petersen for watching all the kids while we listened to Reed - thank you!!

Steve and Maggie at the park
snuggles - priceless

Kelly and kids riding Front Runner to Gateway

Playing in the fountain at Gateway

Lia

Ready for church and Jaxon fending off a kiss from his little sister

Golf was on the list of required things to do

Below are some backyard photos

Jaxon - a boy who would stay outdoors all day every day if allowed

Lia waiting patiently for Grandpa Steve to get the fire going to roast marsh mellows

Dutch oven cobbler in the making

Roasting the mellows.....

and below the results

Grandpa taking advantage of a hug from Lia

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Oh yes ....that cancer thing - we were ignoring that while the kids were home.

We appreciate your calls recently asking the status of Steve's treatment etc. He has not been receiving treatment for a few weeks. He has had difficulty tolerating Revlimid - and previously had problems with Thalidomide, two of the drugs they use for maintenance chemo. He will meet with staff at Huntsman next week and we will update you on what he learns. Steve is working and so enjoys being back. He loves the people he works with and is maybe one of the few who finds it so exciting to get up and head to work each morning!

The Best Things In Life

The best things in life are of course not things. The wisdom in this statement has been underscored in our lives the past several months. Steve has returned to work which is a good thing....however we were able to spend time with family this month which was a great thing! Jennifer and her family stopped in Utah on their way to Ohio, where Gary will be doing a fellowship in pediatric radiology at Cincinnati Children's Hospital. We were able to enjoy their company for a few short days. Audrey and Tanner stayed on for several weeks visiting with family and we were lucky enough to spend time with them and LOVED every moment!

We were able attend a Real Soccer game - Ethan especially loved this outing.

Lauren sporting her new do - she donated her beautiful hair to Locks of Love in honor of Grandpa Steve and her Aunt Shannon.


Cooper, Annie, Cannon & Ethan. We were lucky enough to spend a Sunday evening with the Smiths, Hills, Petersens and the Halvs.

Audrey, G.Lynn and Tanner
We rode in the Antelope by Moonlight ride - missed Steve - but Audrey and Tanner were great fun. The brine flies were in fine form this year!

In Ogden checking out the horses they have downtown.

Monday evening at Temple Square

Park City - on the lift to ride the Alpine Slide

Snow cones!


If we could not locate Audrey all we had to do was to check one of the bookshelves and she would be there browsing looking for a good read.

Audrey turned 16 on their last day here in Utah. We went to dinner at Tepanyaki. Loved the food and the company. Happy Birthday Audrey and thanks for sharing it with us!

Close But No Cigar

We met with Steve's oncologist on Thursday. We didn't receive the news we were hoping to hear -- however he is very close to remission. One wonders about this process, the chemo almost killed him yet the cancer lives on! Tells you something about the tenacity of those cells. He will continue on maintenance chemo for at least a year and a half. The hope is that these medications will put him into remission. The numbers are heading in the right direction which is also a good sign. A heartfelt thanks to all of you who have stayed in touch and prayed for our family during the past six months, we appreciate you and will let you know when Steve is in full remission.

Life After Chemo

For as many years as I can remember Steve has always been excited to attend air shows. He has been fortunate enough to attend several all over the world. Last Saturday at Hill AFB, here in Layton, the Thunderbirds as well as other pilots in a variety of planes performed. Naturally Steve wanted to attend. Me I am thinking - thousands and thousands of people, walking a long distance to get to the side of the runway - of course watching anywhere else is not satisfactory as any purist would know - heat and a recovering cancer patient! Yeah - perfect scenario for a collapse. But I have learned that there are some battles that are better left alone. It was a wonderful day and the temperature was very moderate for this time of year. Steve left exhausted and a very happy man.

Kimball, Steve and Carter

Steve is with our niece's cute boys standing in front of the plane he flew as an instructor pilot over the dessert of Oklahoma and Texas. Though maybe not the most impressive of the planes on the flight line that day, Steve said it was very fun to fly and always an adventure with students at the controls.

Casey, Kimball, Steve P. and Steve T.

In his element Steve told many stories and answered lots of questions. Steve Petersen won the prize for number of questions asked and nothing could have made my Steve's day more enjoyable. Thanks to all for making it such a fun day, especially Cindy who spent her birthday doing what the men in her life wanted to do.

Getting back to normal

You know it must be time for a new post on the Blog-site when you start getting calls from friends and family who are worried because the site hasn’t been updated for a month. “Are you OK?”, “Have you had a relapse?”, “You haven’t been back in the hospital have you?” Imaginations run wild when there are no facts to keep them in check.

However, in this case I am happy to report that no news is good news. Other than a little setback last week as a result of overdoing my exercise program, I am doing fine. I continue to feel stronger and less fatigued every day. I even have a little hair growing on my head, if you can call peach fuzz hair.

I have gone back to work part time. My company has been great about letting me work the hours that I can. As my strength and endurance increase so will the hours I work. Hopefully back to a full time schedule sometime in July.

What’s next?

On the 29th of this month I will repeat all of the tests (MRI, Bone Marrow Biopsy, etc.) that allow the Dr.’s to evaluate the status of my cancer. Then on July 2nd we will meet with Dr. Zangari for the results of the tests. Following Transplant #1 I was very close to being in remission and so we are optimistic that Transplant #2 has done its job and put me into complete remission. Even so it is kind of a nerve racking time as we approach the tests and await the results.

As for future treatment, I will be on a maintenance program for the next 18 months. This is a periodic round of low dose chemo and steroids. These are drugs I have taken in the past with minimal side effects, allowing me to lead a normal life.

So, all is going well at the Tanner house. Life is slowly getting back to normal and best of all we have kids and grandkids coming to visit later this month and in August as well.

Thanks again for all your support and prayers.

Steve

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.