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.

Now it Begins

Every story has a beginning and although this one really started a little over a year ago (see Back to the beginning below) suddenly it just got very real. Yesterday they installed what is called a Triple Lumen Port-a-cath. This is a direct line into my superior vena cava that comes out of a small hole in my chest with three separate lines or ports that hang down like strands of spaghetti. All of my blood collection, chemotherapy, stem cell collection and transplants will be done through these ports. It makes it difficult to be in denial when you have this constant reminder hanging from your chest of what is about to happen. This afternoon we have a meeting with Dr. Zangari and Thursday I begin chemotherapy.

Back to the beginning

It all started a little over a year ago when I went in for a routine physical. About a week after the exam I received a call from the Doctor’s nurse and instead of the usual “everything looks fine” she said that my blood test showed a protein spike that wasn’t normal and that the Doctor wanted me to provide another blood sample for further testing. So being a typical guy I proceeded to ignore the Doctor’s request and went on with my normal every day life. After all who cares about a little extra protein in the blood, how bad can that be? Lynn, on the other hand, being a practical and responsible adult went to that source of all knowledge, the internet, and found out that a protein spike could mean a lot of things, most of which were of little consequence but some being potentially critical, such as cancer. Therefore, I was directed to get my butt back into the Doctor for further testing. After a series of test, first with my family Doctor. and then with an oncologist, it came down to the only way to eliminate or confirm the culprit being cancer was to do a bone marrow biopsy which he could do in his office that day. This cancer question was one I wanted answered as quickly as possible so I said “let’s do it”.

I am not sure I would have been so anxious had I known what to expect. To say it was an uncomfortable experience would be a huge understatement. And then to add to the injury the result of the biopsy confirmed my cancer, multiple myeloma to be exact, a form of bone marrow cancer. Not the news we had hoped for, but there was a bright side. That is, that the cancer was inactive and until it was active there was nothing to do but go about my normal life. Lynn and I did a little research and found out that many people go for years without the cancer going active, so we were hoping for the best. Unfortunately about two months ago my cancer started to show signs of activity and further test have revealed it to be very active.

I have transferred my healthcare from my local oncologist to the Huntsman Cancer Institute and I couldn’t be in a better place, the best decision I ever made, (that is of course next to asking Lynn to marry me). The Doctors and staff have an attitude of hope that is reflected in everything they do. Doctors Tricot and Zangari head up the Myeloma Program and are two of the leading researchers in the field. Their philosophy is to hit the cancer hard and hit it early, an aggressive approach that fits me just fine. The treatment protocol is a combination of chemotherapy and two rounds of stem cell transplants over about a six month period. This approach has taken the median life expectancy after treatment from about 2½ years to 10 years and is getting longer every year. My plan is to help stretch that number even further.

My friend Nancy had a web site that chronicled her battle with breast cancer which she lost about 9 months ago. I know how much the site was appreciated by her friends and family. People could check in any time they wanted to see what was going on and how she was doing in a very non-intrusive way. Hopefully, this does the same for my friends and family. However, don’t let this keep you from calling anytime you would like, if it as a bad time to talk, we will let you know, if not we would love to here from you.