Sunday, February 12, 2012

"Running off at the mouth"

It has now been six weeks since my last chemotherapy treatment.  It is such a strange feeling.  I feel almost like I am aging backwards.  Each morning I wake up feeling 5 years younger than the day before.  (Ten more days and I will be back in diapers.)  I think that I didn't realize how poorly I was feeling until my health started to return.  The contrast has been wonderful.  I don't think that I have ever appreciated my health quite like this.
Happiness is stinky running shoes

On Friday we went to the wound care doctor.  As you may remember, my leg wound, where they harvested the bone to build my jaw, has had significant problems healing properly.  At one point there were serious concerns about needing to amputate or even worse.  Since I stopped chemotherapy and thanks to the wonderful skills of the wound care team, finally my leg is beginning to look better.  The other day, as I was laying on the bed waiting for JoLynne to bandage my wound again our son Peter came in and said, "Wow, that just looks like normal road rash now".  I will take that as a compliment.  On Friday the wound care team also gave me permission to run again.  It has been nearly four months since I was allowed to run.  So, on Saturday morning, I laced up my shoes and went for a run.  It was Heavenly!  I didn't go too far or fast, only three miles.  I was more out of breath than I am used to.  I'm guessing that my red blood cell count isn't quite back to normal yet.  Still, I loved it.  As I was running, maybe it was my imagination, but it felt weird in my jaw where they put my leg bone.  Like the muscles were contracting trying to help me run.  Those body parts need to learn that they have another role to play in my life now.  They have been re-assigned.  Today my leg muscles are sore.  It is so nice to have that kind of pain as opposed to the other types that I have been experiencing of late.

I forgot to mention a very sweet act of kindness shown to me a few weeks ago.  One of my dearest friends came by with a beautiful painting that he had done for me.  This is the same friend who came and paced me for the last 25 miles of the ultra marathon I did last spring.  He said that while he painted he thought of the scripture in Matthew 6:28-30
Painted by my dear friend and running partner

And why take ye thought for raiment?  Consider the lilies of the field, how they grow: they toil not, neither do they spin:
And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these. 
Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, ashall he not much more clothe you, O ye of little bfaith?
Throughout this challenge one of the greatest lessons I have learned is that God loves me and will take care of me.  I have been amazed at how He has cared about even the seemingly small things enough to send help and comfort. Though the trial wasn't taken away, I always felt like a path was provided so that I could find my way through.  I sometimes wonder if God hasn't always been so involved in my life but I was too preoccupied to notice.

Sunday, February 5, 2012

We love the temple!

We had the opportunity to go to the temple this evening.  Our son Jarom came along with us.  It is always so nice to be in the temple, especially with family.  It feels like coming home.  This trip had a special purpose, to try and get an answer about what we should do with chemotherapy.  One of the sweet things about the temple is that I seem to be able to get answers to my prayers more readily there.  This trip was no exception.  After careful thought and prayer both JoLynne and I received an answer, in the temple, that it is time for me to stop chemotherapy.

I have always found it more difficult to get answers to prayers when the matter I am praying about has such profound personal emotions associated with it.  It is hard for me sometimes to separate my personal feelings from answers from God.  The answer that we received in the temple yesterday was unmistakeable.  We are all relieved that I can begin to move on and regain my strength.  Already, on last Thursday my immune system and my red blood cells had begun to rebound somewhat according to the doctor.  My body seems to be coming back to life again.  I feel like I am waking up from a dream.  I still don't have the strength that I had prior to chemotherapy but I feel so much better than a week or two ago that the contrast is amazing.  I am so grateful to feel good again!

I have learned so much these last three months.  Perhaps in another post I will talk about that.  It's a little close to home still to talk about.  One effect of all this has been on my tear glands.  They just seem to work a lot more often than they used to.  Maybe my heart is softer or maybe I am just getting old and leaky.  I look at my wife and my children, I think about the many miracles that have occurred and my heart is full.   I am just so grateful to be alive!

The Provo temple.  Where JoLynne and I were married.   It continues to be a special place for us

Thursday, February 2, 2012

Fortunate fortune cookie

We just returned last night from our trip back to Mayo clinic.  It was a good trip but fast.  This was a three month follow up visit with the surgeons and, of course, a chance for us to visit with our oncologist there and discuss my chemotherapy.

The visits with the surgeons were great.  They are thrilled with how I am healing.  They were very happy with the way that my leg bone has fused to the jaw bone.  They were thrilled to see the nerves of my face beginning to turn on again and they were relieved to see the wound on my leg beginning to come under control.  We talked to the main surgeon, Dr. Moore, about what he thought about the question as to whether or not we should continue chemotherapy.  He didn't really give us an answer but he did tell us that he was certain that he had clear margins all around the tumor.  He was certain that no tumor stayed behind in the surgery site.  I mentioned to him that my hearing seemed somewhat altered since starting chemotherapy so he ordered a hearing test.  It just so happened that I had another hearing test done just prior to the beginning of chemotherapy so that was useful for comparison.  The new test showed significant hearing loss in the upper ranges in both ears.  I had some loss from before associated with my profession and the sound of dental drills but the loss in the last 12 weeks is much greater.  The doctors informed me that this is one of the possible side effects of the chemotherapy I was given.  One doctor said that once gone, it would always be gone, the other doctor thought I might get some of it back.  The other day I noticed that I can't hear birds sing anymore.  That's kind of sad.

Our visit with the oncologist over chemotherapy was a bit less definite.  We had faxed all of my medical records to him last week.  He must have spent some serious time since we sent nearly 200 pages of records and he seemed familiar with all of them.  He shared the concerns of our oncologist in Provo.   I think it was obvious to both of them that if I were to continue on the regimen that I am on now it would probably take my life before I finished six rounds.  He said, "My heart tells me that you should stop chemo now but my brain thinks perhaps we could design a different regimen based on other drugs that you might tolerate better."  Apparently there is a regimen used in Europe that might have less side effects than the one I am on.  We talked about that for a bit.  He freely admitted that nobody knows for sure what to expect from my cancer since it has never really been studied.  They really don't know the chances of it coming back and they don't even know if chemo is effective against it or not.  They also don't know if there is even cancer in my body anymore.  What they do know is that if I start chemo again it will set back the healing of the wound in my leg and possibly allow another infection to develop.  This was a main concern for him.  He felt that another infection in my leg could be fatal.  When it was all said and done he said that the decision would have to be ours.  He told us he would consult with the other sarcoma specialists and with our doctor in Provo.

Today we went to visit with our local oncologist again, Brian Tudor.  We have come to have a lot of respect for him both as a doctor and just as a caring man.  We went through all the scenarios with him again.  He mentioned that my response to three rounds of chemo was more that what he expected out of six rounds on most people.  In his words "If three rounds beat you up that badly, I kind of think, if there is cancer in your body, it would have been equally brutal on your cancer."  Needless to say, he is inclined to have us quit chemotherapy at this point as well but he encouraged us to pray about it and find our answers with help from above.

So, here we sit, with some big decisions to make.  We don't want the cancer to come back but we don't want the risks of additional chemotherapy either.  We plan on going to the temple tomorrow and consult with the Lord.  He has been so good to us up to this point.  We hope and pray we can receive answers again this time.

Today a dear friend came by.  She said that just prior to my surgery she went to open a fortune cookie.  She was astounded to read the following:

It seems that God is writing messages in park benches, in fortune cookies and elsewhere as well.  We continue to feel His love and concern for us.