I am happy to be where I am today

I am very glad to have good test results again. There is no way to know until the testing is completed. They will test me again in 6 months (at 2 years post transplant) and then go to yearly testing. I really don’t expect any problems while I’m still doing the maintenance Rituxan therapy. I will do it again beginning in May continuing into the 1st week of June. This will be the third cycle. The 4th and last cycle will be 6 months after that start.

There are no guarantees with this thing or with my transplant. The bone marrow and PET-CT look clean. There is no way to know if down at the molecular level if there still might be some disease. Dr. Negrea says there are some newer monoclonal antibodies available and being tested. I also read that the antibodies with radioisotopes attached (Bexxar and Zevelin) are being used quite successfully. I try to stay educated about my future treatment options through blogs and teleconferences. I hope to never need any of them.

I continue to meet monthly with my therapy group for Leukemia, Lymphoma & Multiple Myeloma patients when my schedule will allow. It is always good to talk to them and to support new members. Sadly we’ve lost a few friends recently.

I am blessed to have a beautiful wife and son (2 ½ years now). It is difficult to believe that he only has 2 more weeks left of 2 year old pre-school at WIPP. I am blessed to have a great job and fabulous medical insurance (even if the paperwork headaches take a while to resolve).

I have some fatigue. We think it is due to my thyroid underperforming a bit. My endocrinologist has upped my thyroid hormone. Hopefully I’ll also shed a few of the lbs I put on in the last few months. I have been steady at 220-225 lbs for 2 ½ years, but climbed to near 240 over a period of 12 weeks. I also need to work harder on getting to bed earlier, but it is hard when Bennett goes down between 7-8 PM. I feel like I need to get a few things accomplished once he’s down. This past weekend, on our trip to Nashville and Atlanta, Karin and I got to sleep in past 7 am on 3 days. Man that was nice. Almost makes you feel guilty.

Check back here soon. Hope to have details of the head shaving plans for “Bald for Best 3” as we prepare for the American Cancer Society’s Relay for Life the Friday after next.

That’s all for now,

Mark

1.5 Year Post Transplant Testing is Still Good

My bone marrow biopsy is still clean,“no morphologic evidence of lymphoma identified” and my CT PET scan was good, “no significant activity is seen on this exam to suggest residual or recurrent disease”, the largest lymph node measured is stable, and the SUV values are lower than the previous scan.

Things are stable. This is where we hoped that I would be.

It is always a bit nerve racking waiting 2 weeks for the results. Sometimes my nurse coordinator calls me when she sees that the results are good. I didn’t hear from her this time.

I will return to Atlanta in 6 months at my 2 year mark.

I will begin my maintenance Rituxan in ~2 weeks for 4 weeks on Tuesdays.

The gang will be shaving our heads for Relay for Life that same week. We’ll try to do a little fundraising, but we don’t have a lot of time for that.

Take care,

Mark

Saturday night Karin and I me up with Jeff and Holly and their friends and friends of friends for dinner at Dan McGinnis on Music Row. It was great to hang out with them for a few hours. It was good food and good company. All of those folks were going out after dinner, but Karin and I took a cab back to the motel.

We met up with half of the Savannah folks back at the Sheraton and had one drink before calling it a night. I enjoyed meeting them and getting to know them a bit more.

The Marathon was a Success

Karin and the Savannah Team in Training folks all completed their respective Marathon and ½ Marathon events. All of the 14 raised over $2,500 each for the Leukemia & Lymphoma Society to fight Blood Cancers. I am proud of and thankful for all of them. It was amazing to see all of the thousands of TNT folks from all over the country and Canada all in their purple jerseys and singlets.

I held a sign with the TNT logo over my head for more than 3 hours. It said “My Wife Karin is running for ME”. On the back side I had a thank you for all of the Savannah team with their names listed. I was proud to hold it up. I got a lot of smiles, thumbs up, and some tears. I did a good bit of crying myself. I met Karin at about mile 25 and walked the finish with her. I held the sign high. I hope to get some of the official photos. Some other TNT supporters took our picture at mile 20. I hope they are able to forward it.

Karin beat her goal of under 6 hours at ~(5:52:08). Her ½ marathon split was 2:08 (about 30 minutes faster than her Tybee time). Megan Ansley (4:20:16) & Christina Werner (4:18:13) were fast.

I was able to see and cheer on Karin and Erin at 4 locations during the event. I racked up quite a few miles myself. I was the pack mule with water, power aid, protein bars, jelly beans, clean socks, sunscreen, photos, etc. Thanks to Erin’s friends that helped out also.

My cousin Jeff Carr was in the same corral as Karin at the start #17. I saw him in the first turn, but missed him later in the event.

(3:55:28) Holly Carr, my cousin’s wife was under her goal of less than 4 hours. I missed her at the first turn and for the duration. She was hauling.

Karin’s co-workers, Alisha Harvey, Vanessa Routh and Molly Axlesson all completed their ½ marathons.

We saw most of the team after the race or later that afternoon or evening. There were quite a few walking wounded. Most folks were having trouble with the stairs especially.

The total field was 4,373 in the marathon, and 21,398 in the ½ marathon.

Mark

Post Race

Karin, Laura, & Erin ~mile 20

Karin, Erin at mile ~9+

Karin's self portrait before the start

More pre-race photos

Modeling the finest in trashbags waiting in the cold rain before the sun comes up

TNT Team Savannah early am at the Sheraton before the race

Painting the hair PURPLE early am before the race

Karin and the King (Friday am)

We Traveled to Nashville today for Karin’s Marathon Saturday

We got up this morning and had breakfast out with Bennett before taking him to Gran & Papa’s. We got on the road about 10:00 this morning. We stopped in Macon for lunch and Karin’s brother Mark & a co-worker joined us. Travel to Atlanta was smooth.

You will love this: Traffic slowed near Atlanta on 75. We could see blue lights ahead, but could not tell which side of the road they were on. As we approach the emergency vehicles, I see a K-9 unit traveling South on the shoulder in the North bound lane. Not 1 K-9 unit, but three. They are escorting (I guess?) 2 large geese walking South in the North bound lane next to the right shoulder concrete barrier. After that it was smooth sailing through & out of Atlanta. 1 hour time change and we arrive outside of Nashville just after 5:00. We managed with no detours to Whiskey distilleries (yet). Karin has to stay hydrated.

We went to dinner at a Mexican restaurant near where we stayed last year on Elm Hill Pike. We saw (followed) some lovely fat guy with butt-crack showing (“My eyes were burning!!) on a Suzuki motor cycle for quite a few miles on our return. (Karin kept saying, “say NO to crack!, Tuck your shirt in.”)

I worked on thank you letters for all of the Savannah Team in Training Folks. Karin helped me with some posters to hold up during the race.

Tomorrow we will get her race day stuff and move to the Sheraton downtown very near the race finish (2 blocks up from the river across from the Titan’s stadium.

Karin is ready. She has done her training. She started in November training for a1/2 marathon. She didn’t know it for quite a while, but Steve was training her for a full marathon (26.2 miles). She ran 20 miles two weekends ago. That is 6 more than my drive to work. She has exceeded her fundraising goal. She and her buddy Erin have strategy for race day for how to handle the steep hills (there are no hills to train on in Savannah except for bridges).

Tomorrow we will tool around Nashville some. In the afternoon we have a meeting with her team. We plan to meet up with my Cousin Jeff & his wife Holly (she is running the marathon) for dinner somewhere.

See Karin’s TNT webpage. Thanks for all the donations. A few have not shown up in the total and on the scrolling contributor list yet.

http://www.active.com/donate/tntga/tntgaKBest

Check back this weekend for updates and pictures of the Country Music Marathon weekend. And by the way, Karin will do well, we are staying in a Holiday Inn Express tonight!

Take Care,

Mark

1.5 Year Post-Transplant Testing

Karin and I traveled to Atlanta Sunday afternoon. Traffic slowed on I-75 to a stop just prior to McDonnough near mile 196, so we cross-countried it to get to North Atlanta. We stay at a Staybridge Suites that is about 2 miles from Northside Hospital. We had a good dinner at TacoMac. Some clown in the room above us marched around for what seemed like all night. My check in was at 7 am, so I got up and showered. Karin ran me to the hospital, then she went back to the room for a shower and breakfast. The PET-CT takes about 2 hours with the prep, contrast, radioactive sugar, waiting, and then the scans. I was done ~9:30. Karin was waiting for me in the Radiology Waiting area. She had time to check her e-mails. I then had my breakfast. Have to fast prior to the PET. That’s why I try to schedule it first thing in the am.

My bloodwork and Bone Marrow biopsy were scheduled for 11:30. We arrived a bit early. It was good to visit with many of the staff and the nurses that we knew from our long stay.

They gave me plenty of meds for the procedure. Once before they were a little light and I’ve requested more ever since. They make me very loopy, almost out cold. All goes smoothly. We are out of there after noon and pick up some sandwiches to go at Panera for the ride home. I snooze a good bit.

We made a quick stop at the monster Bass Pro Shop on I-75 outside of Macon. Good thing that we stopped because my ice packs were leaking and I’m not allowed to get my wounds wet for 24 hours.

Bennett had a meltdown this afternoon and he was happy to see us back. Thanks to the Wilsons for the overnight with Bennett and thanks to the Grimes for watching after the dogs.

We’ll be back in Atlanta on Monday, April 28, 2008 for my results and to see Dr. Bashey. That will be on our return from Karin’s marathon in Nashville.

Off to bed with ice on my wounds.

Take Care,

Mark