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...

Doing fine...

I'm off the Gabapenten!! My feet and hands are a little numb but I feel more stable on my feet.
I was worried about losing my athletic performance but that hasn't happened. I was also worried about the withdrawals but because I had a bad cold, well I wasn't sure how much was the drug and how much was the cold. That being said I survived and all is well.

I see my oncologist on Thursday, not sure why, I guess he just wants to make sure all is well. I will take some hand and feet numbness and burning feet to avoid the falling.

Other than that I feel great and things are stable.

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

I guess I'm not an Oncologists

A quick update:

Last visit, November 2010 my Oncologist thought I might have a B-12 problem, he doubled my B-12 intake via pills then sent me to get more blood work. It showed nothing exciting so I made the decision to wait until my next visit and "stay with the pill plan". I got my normal 4 month blood tests back last week and thought it showed the same problem with my B-12. I had a really bad weekend with numbness, hurting, cramping legs plus I was doing a lot of falling, mostly while exercising. So I called him and got in early. We went loaded for bear and to push hard for starting B-12 shots.

He checked my test results, asked me several questions and he feels the problem isn't the B-12 (because the November 2010 blood tests came back so good) but that I'm having problems with the Gabapenten. Jenni and I were positive it was the B-12, thanks Dr. Google!! So, for the next few days I will be coming off the Gabapenten and it might not be fun. We will worry about the PN problem once the current problems are sorted out. I can't keep not sleeping, being in pain and falling!

I see the Dr. again next Thursday to check in, he said I should see improvement quickly.

I will blog on how I handle all this, hopefully it will be easy and will be a short post.

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

Test Results... Good news!!

Today I got my test results back: M-spike is 1.9 up from 1.6 but down from a max of 2.4.
My IGG went up to 2073 from 1999 but down from over 2400.

My general blood test still indicates that my body isn't processing the B-12 I'm taking in. All my numbers were worse for each test I've done the last year. That is with the massive intake of B-12 my oncologist has me on each day. I think it is time to really talk to him about taking
B-12 shots.

My WBC count is the lowest it has ever been and so is my RBC. I'm working out really hard so I think my body is using the red blood cells I have very effectively, my opinion. I work out 3 to 4 times a week for 1.5 hours with an ave. heart rate above 130. I guess I need to watch it but it doesn't seem to be a problem right now. My low WBC is concerning but I have learned to be crazy about washing my hands and keeping my distance from sick people. I had 3 big colds this winter but that is a virus and so not really a WBC issue. I really try to keep away from bad bacteria.

So, I consider myself stable right now. I will see my oncologist on the 14th and I'm sure he will be as happy as I am right now. I like good news like this!

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

It's a leg thing, it's very strange..

For you that read my blog you know that I have problems with my legs. Peripheral neuropathy causes hot burning feet, legs that are weak and really don't want to work right. I also have what I call a skip. I call it that because they act like a skip on a CD. They are going well then, skip for a second or 2 and then back to working again. These things don't all happen at one time and isn't always bad. It seems to come and go for no reason. Some days I don't much know it is happening and some days, like today, it's bad. It is just a "bad" day.

Now on to the strange part... I know that I need to exercise and I'm a long distance cyclist. I'm getting ready for a couple of century rides. Because of my increased training I have noticed that even if I'm not walking right or my legs have that 200lbs each feeling, that I can hit the road and do a full ride, flat out like I didn't have Peripheral neuropathy! Today was no exception. My legs were giving me trouble all night last night. Painful, heavy feeling and I needed to keep them moving trying to find a comfortable position. As the day went on they didn't get better. So about 2:00 I hit the road, worried that I would be coming home soon. It wasn't the case. I got on the road and away I went. My legs felt great, I was flying up the hills, my speed was normal and I even passed another cyclist, always fun! Strange!!!

When I got home I dismounted and I really couldn't feel my feet. The stubs below my hips didn't seem connected and wow they didn't want to move! I had to grab the kitchen table to keep from falling! I went and took a hot bath hoping that would help but it didn't. As the day turned into evening they have continued down the "bad" path.

So I'm sitting here with my laptop on my lap. My legs hurt, are weak, don't want to work and I'm confused, and a little pissed off, as to why this happens. I could understand it if I had overdone my exercise or I could understand it if I couldn't exercise during my "bad" days. It seems like they have 2 different states, this bad state and their exercise state, and never the two shall meet. Yes, it is just a question waiting for an answer... I guess I will ask my oncologist next month.

But the silver lining is I know that even when they do this to me I can still go out and train!

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