It is getting stranger... but taking it in stride

So on my last blog I told everyone that all of a sudden I'm being paid a lot of attention to. Dr. offices calling me, scheduling of tests, etc.

Yesterday I got a call, out of the blue, from UCSF that I was scheduled for a bone marrow biopsy. My UCSF oncologist wanted it done right away and so it will be next Thursday morning. Thursday morning!!! UCSF has never done anything this fast before!!! I called the nurse and asked if it was normal or was something going on. All he could tell me was "the Dr. ordered it as soon as we could schedule it... and that is next Thursday". I asked if I needed to confirm it... he said, "No you just need to be here".

I'm use to being the patient that nobody is worried about. The patient who gets to choose, come back in 3,4 or 6 months? The patient who always worries more than the doctors. Not really use to all this unsolicited attention.

Luckily my company, and most importantly my boss, were very supportive. I will be able to go, in fact, he told me to take Friday off and just relax. So... I'm taking this all in stride. I totally understand that this is probably no big thing and I will be back to my normal healthy self real soon. It is just the strange world of having MM... I'm sure all my MM blogger friends can relate...

The body is sick, but thanks to Jesus the soul is alive and well...

Things are getting STRANGE...

I lost my local oncologist in May. He had just had it with California requirements and trying to make ends meet with low medical payments. He went to the VA in Reno, so all he has to do now is be an oncologist. That left me looking for a new oncologist here in Redding. I finally got a new one in August. When I saw her I felt great, I had a few questions but, all in all, a no problems first meeting.

During the work up they measured me. I have been 5'8" since I graduated high school but they measured my height and I was 5'7". During the meeting she quizzed me about that and I said that I felt great and anyway I was 53... maybe I was shrinking... She looked at me and said "you are so having a bone scan". I didn't think anything more about it.

Well, just a few weeks later I got a call out of the blue from my Transplant Oncologist at UCSF and he wants to see me soon. I was shocked but made the appointment. Today I get a call from my local oncologist's nurse telling me to expect the call. When I told her that I had already spoke to UCSF she said that
"he wants to direct your treatment from here on out"!!! What does that mean? She just said that they would work closely with them and not to worry. What treatment?
I do my own treatment, exercise, weight control and attitude but I have no formal treatment. I guess I will have to wait until my visit to UCSF to get this sorted out. As well as I feel and as boring as my first oncologist visit was... the height thing was the ONLY thing that I came up with...

I hope I'm worried about nothing... That will be my mind set until I have something real to worry about... Now ... Lets plan my next bike ride!

The body is sick, but thanks to Jesus the soul is alive and well...

The Tour is Done...

Ya... I completed the Tour de Tahoe.. The 72 miles around Lake Tahoe. What a great ride. I was very strong and I was very pleased with my times. It took me 4:49 of ride time. Counting rest areas and snacks to total time was 5:15. I ave 14.9 Mph. Several big climbs and a lot of little climbs. That was countered by some great downhills with a max speed of 43.7 mph. At the end I was tired but all in all felt great! I did have one climb that I needed to stop and catch my breath, alt. about 7000 feet and I tried to hold on to a string of 3 riders. They were much younger and much better riders. When my heart rate hit 218, well, it was time to stop and get it under control. Only took about 2 min. and I was under 140 so I continued and had no additional problems.

I was really glad my wife was there to drive the 4 hours home. I was much too tired to drive that distance and be safe.

I was really glad I did this and that I was able to do it as well as I did.

Now, I need to stop writing this and go do my 26 miles recovery ride!

The body is sick, but thanks to Jesus the soul is alive and well...

Tahoe is coming... The Tour de Tahoe

I ride as part of my on going treatment for my smoldering MM. Most who have read my blog know how important I think this is. My m-spike and Igg's were on a steady climb for the first 9 months after diagnoses. After they got the PN fixed and I was able to start riding and losing the weight the numbers have gone down and are staying down. Some movement up but very slow.

I ride in the Spring, summer and fall about 100 to 140 miles per week. Most rides are between 25 and 45 miles. To "reward" myself I signed up for the Tour de Tahoe on September 11. It is a 72 mile bike ride around Lake Tahoe. You go from 6300 feet up to 7100 feet with a total climb of 2600 feet over the course of the ride... Some reward. However; there will be about 3000 bike riders there and it should be a lot of fun.

My house is at 300 feet elevation and although I ride the foothills east of my house I hardly ever get over 1500 feet in elevation. Most rides have about 1000-1500 feet total climb. The ride will be a challenge!

So... as September 11 gets close, and you are thinking about what happened on that terrible day, take a moment to think of me. Send me your prayers, good thoughts, mental energy (you decide). All encouragement will be appreciated. I will blog on how I do.

On the MM front, I go see my new Oncologist tomorrow. My first Oncologist quit and moved to Reno to be close to his grandson, who can blame him for that! She came strongly recommended by my GP and I have known Dr. Dave for most of my adult life and his recommendations have always been good ones, so I don't expect this one to be any different.

The body is sick, but thanks to Jesus the soul is alive and well...

Sometimes it's just not the myeloma..

For those of you who haven't read my blog a lot, I'm a cyclist. I ride about 100 to 150 miles a week. For about the last 2 months my rides have gotten harder and harder. My riding was like just before I was diagnosed with MM, short rides and then I would physically run out of gas. At that time it turn out to be a problem with Peripheral neuropathy. I was put on a medication for it, and it worked great for a while, but I had a bad reaction and had to go off. Now the rides were getting worse and so I went to the Dr. and he said my blood numbers looked good, gave me a new mild medication for the PN and sent me home. It didn't help, riding just got worse and worse. I was adding miles but they were much harder miles. I was sure it was my PN or something wrong with my blood counts.

I would go out for about one and a half to two hours and I would physically crash. Short of breath, legs had no power and my heart beat would hit the roof. I felt I was in shape, my weight was in control, it had to be the MM.

Yesterday I had a lot going on at church, mostly morning and evening. I had a break in the afternoon so I thought I would get out and "give it a try". I knew it would be hot, over 95 degrees, but I'm use to that. I went out and hit the hills. I had several good climbs and was on my way down a hill, at about the 20 mile mark, and all of a sudden I realized I was hungry. I looked up about a half mile and there was a hill. I knew I would hit the wall on that climb. Sure enough, there was the wall with 15 miles to go! I then started thinking... I didn't use to do this. Then it hit me !! My body was telling me something, I needed energy. I had used up all the energy I had and it was starting to request more. I had nothing on the bike that could fix it quickly. I crawled in but used the time to really figure out what was happening. Then I remembered that I also use to bring an energy drink and food along every time I rode over an hour.

DUMB... I was so focused on figuring out the MM reason for the poor riding that I was completely forgetting the basics of long rides, Stay hydrated, keep energy available, relax and pace yourself. WOW.. how simple is this. I have been fighting this for two months!

So today I went and bought some 100% Ocean Spray juice drink and filled up a water bottle. The other bottle I filed with water. It was hot, over 90 Degrees and off I went. I started the drink the first mile and paced it through the 26 miles. I climbed about 1500 feet. I felt nice and relaxed and had the same power when I got back as when I left!

I kind of feel silly now, and yes, my wife was laughing at me. I have only done this for all my adult life. What made me think that at 53 I could skip the energy drink when I needed it at 35. I was just so focused on the MM and how it was effecting my riding that I completely disregarded any other options. So yes, sometimes it isn't the MM it is much simpler than that. The hard part is to remember that day to day.

The body is sick, but thanks to Jesus the soul is alive and well...

I'm back...

It has been a long time since I have posted to my blog. The main reason is that everything has been going so well. I still have numbness to my hands and feet, and a few bad days with heaviness but that is about all. I got my numbers back yesterday and today and the best way to describe them would be "stable". Some numbers slightly higher and some slightly lower. All in all I'm very happy with my numbers.

I continue to keep on the protocol, Get light, get fast, get strong, stay happy! It seems to be working so I will keep it up. Riding about 100 to 125 miles per week on my bicycle and keeping my weight at or below 160, that is a BMI of about 24%.

Some of my blog friends aren't doing so well and so I keep them in my prayers daily. New things coming down the tube all the time so there is hope.

The body is sick, but thanks to Jesus the soul is alive and well...

There is hope....

A new Start up company, OncoPep, Inc. is researching a new vaccine for smoldering myeloma. It isn't in clinical trials but hopefully soon. We never hear to much about smoldering myeloma. It just seems very easy to just disregard. Because we usually don't have any symptoms they just watch us close and wait for it to start attacking us. It has always been disconcerting to me to handle it that way. I've never been a wait and see sort of guy. I would rather hit is hard, and if I have to, fail giving it all I have.

I guess that it why I'm so focused on the Freeman protocol,(my Oncologist Dr. Freeman), get lean, get moving and be happy! It seems to work as my #'s are down but it is still a passive approach.

So now I have something to research and look forward to. I will get all the info I can and push to see if I can be a fast starter on the research. I think I would be a good candidate as I'm healthy and happy, apart from having this smoldering myeloma.

So... At least it gave me something to blog about as I'm doing great, feel healthy and getting in better shape for my bike rides every day!

The body is sick, but thanks to Jesus the soul is alive and well...