My Cancer Journey

Today, I am 121 days out from the transplant and I spent this past Wednesday through Saturday at MD Anderson for my first follow-up visit since leaving MDACC. For this trip, I promised to bring out my sister Deanna (you probably remember her from my days in the hospital… the one who drew pictures on my masks) and the twins (who have not seen Houston before). This trip was packed with scans and doctor visits along with getting in sometime around the neighboring areas of the hospital.

We started the trip on Tuesday afternoon (6/5/2007) and we stopped at a hotel in Biloxi, MS (one of the few places on the beach that survived Katrina… it was amazing how thorough Katrina wiped out that coastline in Biloxi). The kids (that includes Deanna) got to walk the beach Wednesday morning and spend time in the pool before getting back on the road. For the remainder on the day, we traveled to Houston. The next day, Thursday, I spent the majority of the day getting scans and blood work. The twins got the grand tour of MD Anderson and were amazed with what they saw (they also agreed with Alex on the quality of the cafeteria food – Austin, like Alex was planning for his next meal at the cafeteria before we finished our meal). They got to start their day with a breakfast croissant at the "Deli" near the rotary House (a favorite of mine) and we finished the day at Goode Company Barbeque (a standard for all my guests in Houston J - and yes Alex, I am bring home a pecan pie from Goode Company).

On Friday, I got to sneak in a good bit of work while the kids slept in. My appointment to see my doctor, Dr. Shpall, was at 11:30. We went early, but as luck would have it, Dr. Shpall was running late and so the kids got to experience the hurry up and wait of being at a busy place like MDACC. The visit with Dr. Shpall was uneventful (which is what you want to have…). The only information that was available was the blood work (counts are updated on the chart). My scans and bone marrow biopsy will not be available until Monday. My PA will email results when they come in. I am experiencing constant pain in my lower left hip, so I had them take the biopsy from the left side. I am anxious to see the results of the biopsy. I am also having problems with pain in my shoulder blades. I cannot stretch my arms over my head without having intense pain (sitting still, I do not feel anything). Dr. Spall thinks this could be arthritis (which is possible post stem cell transplant). She said that SCT speeds up the aging process. She will be looking at the scans for any issues. She said that if it is arthritis that she recommends Glucosamine.    

After my doctor visit, I was able to bring the gang to the Butterfly Museum and an IMAX (Deep Sea 3D – that was a fun one) at the Museum of Natural History. We also spent some time chilling (actually frying – glad that my treatments were not in the summer) in Hermann Park's Japanese Garden. We finished the day by going back to the Rotary House for a Presentation from the Houston Salsa Dancers (click on the link to get to a YouTube of them dancing at the Rotary House… this was not the day we saw them, but it was the same members of the group dancing in the same location of the hotel). They started the night with belly dancers (good Linda was not there J) and at the end we (Dea, Madeline, Austin, and I) got cha cha cha lessons.

On Saturday, I got to sneak in some more work (I am such an addict). We had a late breakfast at the hotel and made a new friend at the hotel restaurant, Mary Ann, who is a leukemia survivor (had an allogenic transplant about 3 years ago – she was there for survivor's day). Later that morning was BMT Survivors Day (an annual celebration for Stem Cell Transplant Survivors). The theme of the event was carnival. They had kettle corn, hot dogs, nachos, cotton candy, candy apples, etc (all the healthy things needed for building your defenses against cancer). All kidding aside, this was a very well done event. As with events like this (where you do not know many people), there was a scavenger hunt to meet new people. I am usually not to keen on these things, but really felt it was an effective ice breaker to meet some very interesting and brave people. The people I met ranged from a 9 year old transplant survivor that had a stem cell transplant at 15 months of age to a person that was the 2^nd transplant patient at MDACC.

The kids enjoyed the event with all the games that were setup to win various prizes… they also enjoyed the ice cream we got at the end. During the event, I was looking for the friends that I met while I was at MDACC for my transplant. In particular, I was looking for Pat, Jim, and Michael. It wasn't until close to the end of the event before I found Pat (picture of Pat and I at the event). Actually, it was her relative (Mary Ann – the person I met earlier in the day) was the one that ran me down and brought me to Pat before she left the event. She was glad to see me and I was relieved to see her. She is still struggling with shingles, but she says that they are starting to get better and that she expects to go home in a few weeks. I was so glad to see her… I did not want to make this trip without seeing her smile (as you can see in her picture, so has a great smile). I did not see Jim or Michael (and I corresponded with Jim's dad less than a month ago and they were planning to be at the event).

The last that I heard from Robert (Jim's dad) was that Jim's leukemia had come back. I was not aware of the seriousness of this coming back and was praying that Jim would be able to fight this return of the cancer. Because I did not see Jim at Survivor's Day, I went up to the 11^th floor of the hospital and walked the halls to check the patient boards for Jim's name. I could not find his name, so I ended calling Robert. Robert and his spouse were on their way back to his hometown (Lafayette, LA). Robert informed me that the leukemia had spread to the brain and that Jim was terminal. On Saturday morning, Jim was picked up by ambulance (the same company that Jim worked for back home) at MDACC and driven back to his hometown hospital. Needless to say, this was a very sobering and sad piece of news for me. I felt extremely helpless and was not sure what I could do.

Linda, my wife, suggested that I call Robert to see if I could visit Jim on way back home (since we pass the town of Lafayette). This call to Robert was difficult to me. I did not want to impose on Jim and his family during his last days with his family and friends. I ended up calling Robert and asked if Jim would like for me to visit on my way through town. Robert felt that Jim would appreciate this. Robert was acting on Jim's behalf to make this decision (the leukemia has attacked the portion of Jim's brain that affects speech… so Jim is not able to speak). Robert said that he occasionally will say a word or two. Jim said late last week the words "go home" (which was Jim's wish to pass in his home town and not Houston).

It was very difficult to see Jim. He is a fighter, but you could see in his eyes that he is at peace with his condition. There are few words that came to mind when facing Jim in his terminal condition. All I could do is to go up to him and hold his hand and say God Bless. I will continue to pray for Jim to have a blessed life as he is visited by family and friends. Jim and Robert are and will continue to be a blessing in my life.