I had x-rays of my back taken Wednesday morning, then delivered the film to the neurosurgeon. The doctor said everything looked good, of course, he still wants me to wear the back brace. Good times.



Here's a couple of pictures of the Siteman Cancer Center in St. Louis. Tida took some other pictures and videos of my procedures, but we don't need to share those!

On a diferent but related subject, Tida's boss sent her an email in early Febraury, before we knew all this stuff about me, that follows. The timing's a little eerie:

I was recently informed of an amazing story about a friend of mine Jeff Davidson and his expression of love and determination to help his son Zach fight the effects of Leukemia. Zach was diagnosed with Leukemia at age 3 and currently is in treatment and will be for roughly 2 more years. As a father of two children, I understand the emotions and stress parents go through when kids come down with the flu or get injured due to accidents. However, I cannot imagine the internal strength and faith Jeff has to possess each day to manage through his son's illness.
Jeff is actively involved with "Team in Training", a sports training program with more than 380,000 participants raising money to support The Leukemia & Lymphoma Society. Team In Training (TNT)has grown to become an unparalleled sports training program, from first timers to seasoned athletes. Participants train with the Team to achieved their best at marathons, half marathons, triathlons, 100-mile century bike rides and hiking adventures. Jeff and Zach's story has inspired me to get involved and join Team in Training so I can participate and raise money for the many families fighting this disease. I know Jeff and his family are in an ongoing battle to beat this and when I was asked to get involved, I couldn't say no?
I will be training for a 100 mile bike ride around Lake Tahoe the first of June and this is no trivial ride by any means. There will be a considerable amount of time and effort to prepare for this event, but considering the challenges that Zach faces each day, it makes this journey seem so attainable. I am asking for your help through financial support so I can reach my personal goal of $6,500 for blood cancer research.
Please use the link in this email to quickly and securely donate online. You will receive a confirmation of your donation by email and I will be notified as soon as you make your donation.
http://pages.teamintraining.org/mid/ambbr09/jhicksyxhe
Each donation helps accelerate finding a cure for leukemia, lymphoma and myeloma. More than 823,000 Americans are battling these blood cancers. I am hoping that my participation in Team In Training will help bring them hope and support.
On behalf of The Leukemia & Lymphoma Society, thank you very much for your support. I greatly appreciate your generosity.

Jeff''s lowered his goal to $4,500 and he's getting close, but time's running out. He made a comment to Tida that he was going to put my name on his shirt during the ride. I don't now if he'll really do it, but just the thought is totally unexpected and very touching.

We're back from St. Louis and the Siteman Cancer Center, it was a fast turnaround. First, a couple of things I forgot to mention in earlier posts. The results from Mayo of the soft tissue at L-3 and L-4 came back, and it seems it's the same as C-4 & 5 after all. So only one kind of cancer to worry about. Also, I'd been taking Ambien to help me sleep, but it totally messed with my moods and emotions, so I quit that and started taking an over the counter sleep aid. My mood changed back almost immediately, my emotions are in check again and I'm still sleeping pretty well, so I'll stick with that as long as I can.

Okay, Siteman. I got 5 vials of blood drawn around 7:30 a.m., then met with Dr. Vij around 8:15. He reviewed my history, previous test results, etc. and has come to the same conclusion as Dr. Hart: that I have multiple myeloma. He definitely knows his multiple myeloma and we ended up wishing we would've recorded everything he said, there was just so much information. After meeting with Dr. Vij I had another bone marrow biopsy and they drew another 5 vials of blood. They wanted to use some of the biopsy for research along with a skin sample, so after the biopsy was complete they "punched" a sample of skin around the incision site. I was totally sedated so I don't remember any of it. Probably a good thing!

We're supposed to get results of the blood work and biopsy no later than June 2nd, then meet with Dr.Hart on the 4th to review everything and presumably decide on a treatment plan and schedule. I'm assuming I'll start chemo very soon after that. The whole treatment plan for multiple myeloma is pretty extensive, and it sounds like I'm going to have an interesting summer.

Wednesday morning I have x-rays and an appointment with the neurosurgeon. I get another break from doctors for about a week after that!

I had my PET scan today, and because Dr. Hart wanted the results available for the Siteman Center in St. Louis Tuesday, they read the scan and I was able to pickup up a disc to take with us. There were no surprises, everything that had shown up on the previous MRI showed up on the PET, but nothing new. Good news! There is a "new" lesion on he right hip, that I don't think I'd mentioned earlier. The doctors had mentioned it as an area to watch on the MRI, but I don't remember anyone actually saying it was a lesion. A little denial maybe?

I was fitted for a back brace Monday to support the T-12 area. I'm not happy about it at all, but I'm wearing it almost as much as the neurosurgeon requested. It's much larger than I'd expected, but the original brace they were going to fit for me was even larger with a big metal brace in front that would've restricted a lot of movement. I probably wouldn't have been able to drive, so I guess what I have isn't all bad.

Dr. Hart shared a story with me this afternoon about my first PET scan that had shown spots in my lungs, but nothing in the lungs showed on any MRI's. There was a nationally known PET scan expert lecturing in the area and one of the topics was some rare false positives. The head PET scan guy at St. Luke's shared my history with him, and it turns out my case is classic for the false positives. They gave the lecturer all my scans, etc. and I'm going to be in the medical journals. At least I'll be famous for a false positive and not the other way around!

We leave for the Siteman Cancer Center late Monday afternoon. I'll start with lab work around 7:00 a.m. Tuesday, meet with the doctor at 8:00, then I'm scheduled for a bone marrow biopsy at 9:30. Not sure what the rest of the day will hold, but if I get morphine for the biopsy I probably won't care! We're looking forward to hopefully getting some consensus on a treatment plan and getting it started.

Well, I've waited quite a while to post because I thought I'd wait for some results to share. We still don't have results, but I'll give you an update anyway. The week or so after my last post was a little emotional and difficult for Tida and I. The unexpected and unknown news just seemed to hit us harder than in the past. I've recovered from that and I think Tida has, a little anyway. I've got the gloves back on and ready to go a few more rounds.

I've got some appointments this week. Lab work; fitting for a back brace to support the T-12 area (courtesy of the neurosurgeon-we'll see what it's like, I may be kind of stubborn about it); an appointment with the hematology oncologist; and a PET scan on Friday. It'll be a little busy, but I'll still be able to work at least some every day except one.

Then next week, we have an appointment at the Siteman Cancer Center in St. Louis for a second opinion. We'll start early Tuesday morning with lab work, then meet with the doctor. After that, it's up to him whether we have more tests run or not. We anticipate being there just one day, but they've told us we may need to come back Wednesday. We're just looking forward to trying to get a consensus on what's going on, then starting whatever treatment is required.

My hematology oncologist is weaning me off the steroids getting ready for any tests at Siteman. Normally I'd be okay with that, I just hope the leg pain doesn't come back in the meantime. I've had a little lower back pain that a few months ago I would've just accepted as my normal back issues, but now, we have to wonder if it's associated with the T-12 or lumbar areas. It seems to loosen up as the day goes on, so I think it's just a muscle issue, but it's frustrating that we even need to question it. Guess it's just the new reality.

I'll try to be a little more active in updating. I know there's a lot of interest, and so many of you are supporting us in all kinds of ways. Our neighbors continue to be incredible, and continue to do unexpected things for us. Again, all the support is overwhelming and there's no words to express our gratitude.

Today didn't get started as planned. We arrived at the neurosurgeons office only to be told that he was called into emergency surgery that could take most of the day. That left about 2 1/2 hours to kill before the next appointment.


When we arrived for the next appointment, we were told they had us on the calendar for tomorrow. Excellent! They said they would call the nurse and see what could be done. Long story short, we were able to go ahead with the procedure, we just started about an hour late, still much better than having to go back tomorrow. The doctor had planned on performing biopsy's on both hips, but everyone felt she got good enough samples that only one side was necessary.

Prior to the procedure we had a lengthy discussion regarding my status, planned treatments, etc. Because of the occurrence of the new lesion at L-3, and the continued activity at T-12, Dr. Hart believes I have "declared" and now have multiple myeloma. My blood work continues to look good, but with the negative bone marrow report and spinal activity, she's ready to say I have myeloma. She's ready to start a systemic (chemo) treatment plan pretty quickly. We discussed a second opinion, which she's completely open to and has helped with recommendations. She's willing to wait on the chemo a couple of weeks until the second opinion is complete.

A couple of other things. The pain in my leg has gone away since I started taking steroids again. Since this type of cancer is treated very well with steroids, it's possible they may stick with just steroids and not do any radiation. Also, the fact that the tissue sample taken from L-3 appears to be different from the original sample in C-4 has made the doctors step back a little. The words that were used were: "it's very weird", and "it's one for the ages". So once again, just when we thought we might be on a track that everyone agreed on, my "uniqueness" comes out and we need to figure out what's going on. Dr. Hart's supposed to call tonight to give us some information on the tissue samples; I'm sure if they really are different, that may change treatment plans.

I've gotten used to rolling with the punches, my chin's still up, and we'll just take it all a day at a time.

Again, thanks for all your prayers and support! We love you all!

When I last left you, we'd gotten some results that were relayed via phone but didn't tell us a whole lot, other than we need more testing. So the testing began today. we started out checking in at 7:30 a.m. for bone biopsy's on T-12 and L-3&4. They started out with L-3&4 since there was soft tissue and they wanted to get it to the pathologist while they worked on T-12. Everything went well, much better than the experience we had back in March. The pathologist said they got a good sample, but it looks like different tissue than in the C-5 region. Also, it looked like the tissue was restricted to L-3 only. The T-12 sample was okay, but they said the bone sample was "mushy".
We had a couple of hours off, then met with the radiation oncologist who reviewed the MRI results from last week (we got to see some of the MRI's which helped). He anticipates beginning radiation treatments this week on T-12 & C-3. While we were there he ran a CT scan to locate everything he needs to radiate and get me "marked". He doesn't think the I'll have as many treatments, maybe 10-14, to make sure he doesn't damage too much bone marrow in anticipation of some future treatments with bone marrow.
Tomorrow I'll meet with the neurosurgeon to see if there's anything he needs to do at T-12; the bone marrow biopsy's on both hips; then I'm finishing up with a dentist appointment if I have time. Whoda thunk I'd be looking forward to the dentist!
I'll try to give you an update tomorrow night!