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