TNT Kick Off, BMT Reunion, & SF Marathon Expo

Today was a very busy day for us. We started the morning off by attending the Fall TNT kick-off. Training starts tomorrow morning, however we will be unable to attend due to the SF marathon.

Right after that we headed to Stanford for the BMT reunion. This was the first year I was able to attend due to my relapse last year. I wasn't planning to go since I wasn't sure I wanted to remember that time all over again, however at the last minute I decided to go and I was very happy that I did. I got to see some nurses and doctor's that I hadn't seen in almost a year and share some good times. I've attached a group picture of all the BMT survivors that were there (the people wearing leis have been out of transplant 10+ years), as well as one of me and Dr. Lowsky (my BMT doctor). Me and my friend Andrew (who is awaiting a 2nd transplant and I used to work at Harmonic with) are on the top left side of the group picture. I got to chat briefly with my BMT doctor during the reunion (I usually see him once a month anyway) and to my surprise he discussed the possibility of doing some DLI's (donor lymphocite infusions) on me. DLI's are basically where they put a small dose of your original donor's cells into you (kind of like a very mini transplant) in hopes that they help out in fighting your disease. The main risk with doing these is getting graft vs host disease. I had asked about the possibility of doing these in the past, but he always said that my disease was too advanced and that the risks would outweight the benefits, however now he seems to think differently. He feels that the chemo I've been getting can't possibly be what's keeping my disease under control since it never responded this way in the past with much stronger chemo's so he thinks that my donor's cells must be doing something and that by getting some more into me it may keep my disease under control even longer. He's still in the early stages of thinking it through, but it's something that he's willing to discuss and look further into. The fact that I did have a breakout of GVHD just recently worries him a little bit, but I told him I'm willing to risk anything. Of course we would still have to see if my donor from Germany would be willing to donate again and is still eligible.

After the reunion, we headed up to the city to the SF Marathon Expo where we picked up our bibs and race packets. We then drove through part of the course that we will be walking through tomorrow. It's hard to believe that in a few hours we will be out there walking all those miles!

Erika's Treatment Update -- Week 58

Today was as usual a long day at Stanford. I had my labs drawn (all my counts looked good), met with my oncologist and BMT doctor, and had chemo. Chemo got delayed for a while because my medical chart went missing. They never did find it, apparently they will have to get copies of all my history from medical records. I'm not quite sure how a 5 lb folder could go missing, I swear I have one of the thickest patient files there!

My oncologist and I discussed in more detail the results of my MRI's. Apparently the only thing I can really do at this point is take anti-inflammatory drugs, ice the area, and try to take it easy until my back starts to feel better. She also recommended that I stay away from chiropractic treatment and try sport massages instead to alleviate some of the muscle pain/soreness. I did get the okay to do the SF 1/2 marathon this Sunday...hurray! I am a little concerned since Chris and I weren't able to do any training last week and there's a time limit of 3 1/2 hours, which means we have to maintain an average speed of 15 minute/miles. I guess we will just do the best we can considering the circumstances.

I also received the results of the CT scan that I had done on Tuesday. My oncologist was pleased with the results...my liver mass has shrunk by half and it's difficult to tell whether the chest/lung masses have remained unchanged or have shrunk a little bit. The good thing is I appear to be responding to the chemo for now.

Chris and I have officially registered to train with TNT in the fall. We will be training for the SF Nike marathon. We're not sure yet if we want to do the half or full, I think we're going to see how the training goes and how my back does throughout the season.

This weekend is full of activities for us. We have TNT kick-off on Saturday morning, followed by the Stanford Bone Marrow Transplant reunion (which I wasn't able to attend last year due to my relapse), the SF 1/2 marathon expo to pick up our bibs/race packets, and then the 1/2 marathon on Sunday morning. We also want to squeeze in the Gilroy Garlic Festival, but we're not sure that will happen. I've heard the traffic, parking, and heat are terrible so I'm not sure it will be worth it to go.

MRI Results

I finally got the results of the MRI that I had done of my pelvis/hips this past Saturday morning. It looks like the area is disease/cancer free which is definitely a relief. In addition to the herniated disc in my lumbar region, I also have bursitis in both hips and some swelling around the sacro-iliac joint. The disc and bursitis is most likely caused by the exercise I have been doing and the sacro-iliac joint could be caused by chiropractic manipulation. My oncologist will be discussing these further with me tomorrow when I see her and we will talk about what I will be able to do about it. I'm really hoping it won't keep me from doing the 1/2 marathon this weekend and training for the Nike marathon.

I also had my CT scan of the chest, abdomen, and pelvis this morning. I should get the results tomorrow along with my 9th dose of Velban. I'll make sure to post an update of the results as soon as I know.

Back Problems and MRI's

Just when I think I'm doing good and I can be away from Stanford for a little while, something comes up...my lower back pain had been getting worse this past week not allowing me to walk since Monday. I figured by resting it would start to get better on its own, however by Thursday I was in too much pain and decided to call my oncologist. I was told she was out until next week and I knew I couldn't make it through the weekend without seeing someone so I went to see Dr. Michele at Spectrum Health Center (chiropractor) and she did an x-ray of my lower back/pelvis. The x-ray showed some funny looking round spots inside my pelvis bones that looked very suspicious. She felt it was necessary to schedule and MRI right away due to my cancer history. That evening I was at Stanford getting an MRI. Friday I contacted my oncologist (it turned out she was in, just not seeing patients) and she gave me the results of the MRI - normal but with a herniated disc. Later I got another call from the MRI department asking to schedule another MRI for the pelvis. Well it turns out that they didn't do the necessary tests (the area of concern) so I had to go back in at 7am this morning to re-do the MRI. I'm hoping to get the results either Monday or Wednesday when I'm in for chemo. Unfortunately, we won't be able to do the Wharf to Wharf race tomorrow as intended, and I'm hoping that I will be able to do the SF 1/2 marathon next Sunday that we have been training for the past few months. This morning I attempted to do a short walk, but was unable to go further than a few blocks, which was very dissapointing.

Three Years Since Being Diagnosed

Three years ago today was the day that I walked into my oncologist's office and received the news that I had Lymphoma. It's amazing to think that it has only been that long considering all the treatments/procedures I have been through. Last Friday was my 2 year anniversary from my first transplant and August 6th will be my 1 year anniversary from my second transplant already!! Crazy! No treatment for me this week, I'll be back at Stanford next Tuesday for my CT scan and for treatment on Wednesday.

Chris and I are officially registered for the SF Chronicle 1/2 Marathon (www.runsfm.com) on July 31st...there's no backing out now!! We will be doing the 2nd half of the marathon which starts at 8:15am (rather than 5am) and is a flatter course. We really wanted to do the 1st half where you get to go accross the Golden Gate Bridge, but it sold out before we got to register. This past Sunday we did a 12 mile training at Sawyer Camp so we should be prepared, now we're just going to start tapering down our miles. This coming Sunday we're planning to walk the Wharf to Wharf unofficially (again it was sold out before we could register).

My back has still been bothering me from all the training. I have been going to a chiropractor the last week to have it worked on as well as some of my other muscles which are really tight/sore. I also had a test done to determine my body fat % and muscle mass % so I can start a proper nutrition program. I started drinking some banana soy protein shakes this morning that are supposed to help me out...yum!

Chris and I have also been talking about training for the SF Nike Marathon in October. We will be training and fundraising with TNT. If any of you are interested in joining us, there are still a couple of information meetings coming up (http://www.teamintraining.org/all_cal.adp) and kick-off is scheduled for July 30th at the Westin Hotel in Santa Clara. I know a lot of you would REALLY like that nice Nike t-shirt and the Tiffany medal!!! And the event is local so the fundraising isn't too high and you'll be getting a great workout. If I can do it you can do it so there should be no excuses!!

Erika's Treatment Update -- Week 56

Today was another long day at Stanford. I had labs in the morning and my doctor appointment wasn't until the afternoon so there was a long lapse in between. Fortunately Chris took the day off from work today to accompany me and we went to Stanford mall to kill some time.

My labs looked great (my white and red counts are both in the normal-high range from all the Procrit and Neupogen shots that my dad has been giving me) so we were able to proceed with chemo as planned. My liver numbers were finally all back to normal, my electrolytes are all still a little on the low side so I have to continue taking magnesium and potassium supplements along with a high sodium diet and my LDH was still rather elevated (although slightly lower than last time). The biggest issue discussed today was my weight and amount of training that I'm doing. Everyone seems to be concerned that I'm not maintaining my weight (although I'm very happy with it at the moment) and that I'm overdoing my training and need to take it easier. Since Monday I have been experiencing some lower back pain, hip pain, and calves pain to the point where today I was unable to walk. My doctor thinks it's related to my training and possibly the tapering of prednisone (I started tapering down to 15mg over the weekend). I was so happy that my BMT doctor had agreed for me to taper down, however now I think I might just go back up to 20mg and stick with that since my body is used to it and it's too painful to go through the side effects of lowering it. I don't want to sacrifice my training and not be able to do the events we have been looking forward to doing and have been training so hard for.

I also had a chest x-ray done today and the main tumor in my chest and lungs again looked slightly better than the one I had done back in June. I was able to actually see the results this time on a special computer and my doctor put up one of my x-rays from last October so I could compare it to the one from today and it's amazing the difference in size and how far I've come. The true test of course will be in two weeks when I have my full body CT scan to see if not only my chest is responding, but if the liver is as well. My scan is scheduled for the 26th and I see my oncologist again on the 27th so I'm hoping to get the results then (it will be a very nervous day for me).

Below is a picture of Chris and I with the city in the background when we did our long walk in SF this past weekend. We were heading back from the Golden Gate bridge to the Ferry Building. It was cloudy at the time, but it turned out to be a nice day aftewards.

4th of July Weekend

Hope you all had a great 4th of July weekend, the weather couldn't have been nicer! Chris and I had a pretty uneventful one for the most part. Sunday we went up to San Francisco and walked approximately 13.5 miles. We started at the Ferry Building, along the Embarcadero to Golden Gate Bridge and back and then up to Union Square and back. We then drove up to Fillmore Street and walked around some more, but didn't count that into our mileage. Yesteday we were pretty exhausted so we did a short 5 mile walk and took it easy the rest of the day. We feel ready to do the Los Gatos 1/2 marathon this coming Sunday, however we've decided to do the San Francisco 1/2 marathon on July 31st instead. The course is more scenic and we just really enjoy walking up there. We also wanted to do the Wharf to Wharf 10K on July 24th, but it just sold out...too bad.

I won't be going to Stanford this week since I'm on an every other week chemo schedule for now. I've been getting my Neupogen shots the last 5 days and Procrit shot weekly so my counts should be pretty stable.