Day 325

It's almost a year since I began the transplant process and a lot has occured, most of it good. Amy got married in Denver in May. It was a fantastic party. Joan and I went to Scottsdale, Honolulu, and the kids gave us a five day sojourn in Napa Valley for our thirty fifth anniversary. It was a very good time.
It's strange how when time elapses after some intense events in your life those events have far less of an impact. Thank heavens we have the capacity to forget. I've been in Stringent Complete Response, aka remission, since March. Dr. Vesole, my MM specialist in Hackensack, said that it may take as long as 4 to 5 years before I relapse. I hope he's right and I hope he's wrong. Longer is better. In the mean time, we intend to live life to the fullest.

Day 110

You reach some points in your life where there are forks in the road and you have to choose what direction to go. Those moments can fill you with self doubt and trepidation. Our visit with Doctor Rowley at Hackensack University Medical has brought us to such a moment. Here's the result of the consultation.
The test results over the four months since the transplant show that the cancer is the same as it was before the transplant. In other words the transplant had no discernible impact. The chemo before the transplant reduced the cancer by 90% and that's where it rests today. The team outlined four courses of action to select amongst:

1. Wait, watch, monitor and commence treatment when the disease starts to progress.

2. Commence a chemo regimen to hold the disease in check and go to more aggressive regimen when the disease starts to progress. The danger in this approach is that the disease will become resistant to the chemo being used and it will no longer work to curb the disease.

3. Do another Autologus Stem Cell (my own stem cells) transplant under a Clinical Trial chemotherapy protocol which is more aggressive than the one used in my first transplant. This could leave me with a better response, or not, awaiting a relapse and perhaps an Allogenaic (using brother Ed's stem cells) but with a decreased chance for successful results.

4. Allogenaic (Ed's cells) Stem Cell Transplant. They are looking to do this in early June. This process replaces my immune system with Ed's immune system but it has the following risk/reward scenarios:
A. I could get severe GVHD (graft verses host disease) where Ed's immune system perceives my body as the enemy and attacks and destroys it. There is a 15% chance that this could happen and the result would be death shortly after or during the transplant process.
B. I could get chronic GVHD which would mean being on strong immunosuppressants for the rest of my life but I don't know how long that would be and my quality of life would be greatly impacted. I have to check on the percentages relative to this possibility.
C. I could get mild GVHD with strong GVM (Graft Verses Myeloma) in which case the GVHD would disappear and the Myeloma would be cured. I also will have to check on the percentages for this result.
D. I could get mild GVHD with no GVM and also don't know the percentages.

Anyway, this is the crossroad at which we find ourselves. All of your observations and inputs will be appreciated. Thanks.

Day 93

Hackensack called and we have a followup appointment with them on the 25th in New Jersey. My paraprotein measures 0.3 which amounts to a Very Good Partial Response but not a complete remission. In the mean time I've developed some very acute pain in my left leg from the buttocks on down with some numbness in my toes. It may be related to Stenosis and not my Multiple Myeloma. I'm going to have an MRI as soon as they can get it scheduled to be followed by an appointment with an Orthopedic doctor where I had my knee replacement. My GP put me on steroids but they haven't had any appreciable impact. I can't lie down to sleep, so I sleep sitting up on the couch. Other than that everything is going well except I'm going to miss the annual golf outing at Pinehurst this weekend. The thought of attempting to swing a golf club makes me grimmace. The hair on my head is begining to show it's fuzzy self. Maybe it will be fully grown by the time of Amy and Kevin's wedding in May.

Day 62

There's not much going on. I'm just getting over a cold that I was afraid would turn into pneumonia. All I did with it, though, is pass it on to Joan and Melissa - oops. The hair on my head is beginning to grow, I look like a body with a cotton swab for a head. I hope that it's all grown back by Amy's wedding. I meet with Dr. Hellner, my local Oncologist, on the 22nd. At about that time there will be more bloodwork to see how I'm progressing. I'll have a meeting with my friends at Hackensack University around day 100. We'll figure out future treatment at that time. Even though there's no measurable Cancer at this point, I know I'm not cured.

Day 56

Hi Everyone, sorry I haven't posted for so long. I'm in recovery mode at home since my transplant and there hasn't been a lot to report. I began an exercise routine soon after I got home. Needless to say my mind thought my body could do more than it was willing to do. I started on the upright Swinn airdyne bike and thought I could do 20 minutes and suceeded at 5 minutes. Joanie suggested adding 1 minute per day to the routine and now I'm up to 35 minutes plus I've added Melissa's stretch routines back into the mix. Exercise really helps with the recovery process. My labs came back with almost everything in the normal range and no measurable M-Spike which means no measurable cancer. The only crappy thing that has occured is an itchy rash on my face which apparently others who have had a stem cell transplant have experienced. Anyway, it's on my list of things to talk to my oncologist about. We're all excited about Amy and Kevin's wedding in May. I hope I have hair on my bald dome by then.

Day 21

We're home from Hackensack and feeling better every day but still basically tired.. We are very grateful to Barbara Laudi for all of her kind help during our stay. Our next step will be to monitor the cancer through monthly blood work. Hopefully it will show that the transplant was successful. My excercise program begins today, back on the bike and back to Missy's streches. Also back to the organic diet. I hope I get several years before I relapse and that the guys and gals in the research silos come up with a cure. May God pump innovation into their neurons.

Day 15

My counts went up - yea! They're nothing approaching normal but they're getting better. Today should be my last day on antibiotic IV infusion, it has worked very well. I'm still a little swollen but getting better and I may not need a transfusion. Amy and Kevin headed home yesterday, out from under the Blizzard of 2010 but stuck in Dallas on their way to Denver - one step at a time. Rob heads home to Austin this afternoon. I'm hoping we get a release from the hospital to head home to sunny Charlotte very soon. I'm feeling a lot better than I felt on day 7, 8, and 9 and recognize that it will take about 3 months to get back to normal.