VGPR - Very Good Partial Remission

Today is Monday morning, November 9th and I am at the Huntsman Center starting cycle #4 of my low – dose chemotherapy. I have been off all my cancer meds for the last three weeks and I feel great. I’m sure that is about to change as I start a new cycle of treatment, but there is no other way of killing the beast. So I guess I will just have to do as some of my Idaho in-laws would say, that is, just cowboy-up and deal with it.

The reason for the break in treatment was that I completed three cycles of treatment and could not start the forth until I re-tested (bone marrow biopsy, etc.) and had a visit with Dr. Zangari. Fortunately that process took a few weeks and I got a brief break from the chemo. However, that all happened last week and I am back in treatment today. The visit with the Dr. on Friday turned out to be all good news, not perfect, but overall very good. My Myeloma markers have all improved so I asked him “Am I in complete remission because I would really like to tell my daughters that I am”? His reply was “Let’s just say you are in a very good partial remission”. I thought at the time he was just giving me some weasel words to appease me, but I found out this morning from my P.A. that VGPR (Very Good Partial Remission) is actually one of the categories they use for defining a patient’s level of remission. They are:

Partial Remission
Very Good Partial Remission
Near complete Remission
Complete Remission

So even though I have a ways to go, things are all moving in the right direction and I am optimistic that sometime over the next 9 cycles of chemotherapy we will beat this monster into submission and get to complete remission.

Kentucky Rendezvous

Worth the Wait

Have you ever counted the days and just prayed that nothing would interfere with your carefully laid plans? Our family hadn't all been together for over two years, thankfully in October we gathered at the Halversen's home in Northern Kentucky. Two important events in our lives brought us together. Ethan, Jennifer and Gary's youngest son was baptized. Thus far we have not missed one of our grand children's baptisms, a record we plan to keep intact. Lia, Kelly and Tyler's oldest daughter, had her seventh birthday that weekend. Serious excitement. A few of the clan encountered some germs, they shared, passed it on and yet we managed to have a wonderful time together. Fall in Northern Kentucky and Cincinnati was picturesque and the weather was delightful. Thanks to the Halversens for their hospitality - can't wait until December in Wisconsin!!

Gary and EthanApparently we were early......

Ethan anxiously waiting to get started


Dinner after the baptism

The men and some of the girls ate an amazing amount of ribs - Tanner not surprisingly ate the MOST!!




Ethan and Jaxon were so entertaining, their small plates turned into flying saucers and their napkins were masks....they told tall tales - great fun to witness.

Decorating individual cakes for the birthdays - Ethan just turned eight the end of September

Ethan and Lia opening gifts

Lia, a true Wisconsinite with her Packer's shirt

Ethan with his comforter and chocolate!



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Jennifer took those of us who had never been to Cincinnati on a tour.


Are they adorable or what?



Enjoyed the ride - it was a gorgeous day.



Kelly, Maggie & Tyler with the Ohio river in the background

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Family Photos- everyone's favorite day!?

Great backyard - and exceptionally good looking family

TheHalversens


The Kings

Standing - Lia, Lauren, Annie
Audrey & Maggie sitting

Jaxon, Tanner and Ethan

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

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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!