Friday, May 15, 2009

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.


Stacie & Casey


Wednesday, May 6, 2009

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

Friday, May 1, 2009

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