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...

Cancer-- and my changed perception of the future

The question came up during Jenni's and my "morning time" that we do every day. We spend about 45 min. every morning talking, she has a diet soda and I drink hot tea, and we talk and plan and just enjoy each other. It is a great way to start the day and we have done it for years. This morning she stopped and ask me a very interesting question, "when you think about our future do you vision us in our 70 and 80's?" I thought about it for a moment and I had to say no. My future, as I think about it now only extends to about 60 or 65. About 10 years out.

I use to think about myself being older. I would be working at church with very healthy older men in their 70 and 80's and I would picture myself being just like them. Older but still strong and full of life. I knew that something might happen to prevent that but it would be quickly dismissed and the vision of the healthy, strong and active older man came rushing back in.

Then the multiple myeloma came into my life. No cure for this cancer. Most agree that 10 to 15 years, at this point, would be a good run and be a success. I can think about me older, but it is kinda like the flip side of my previous thought. It comes into my mind and is quickly dismissed and I'm back thinking about me and my cancer. Now to be fair there are oncologists that are saying that they have created cures, most notably the Arkansas team. They claim a high degree of success. I have looked hard at it and have met many Arkansas patients on blogs doing that treatment. ALL are very sick now and have been for quite some time. Some are not doing well at all, so #'s aside and looking at real patients, I just do see it, sorry Nick!

I have really researched my options and I like the minimal chemo path adding to what I'm doing now. I trust my Oncologist both locally and at UCSF. I'm not looking for a long life just a good life. I heard a Christian speaker at our church and his point was that God knows the date and time that he will call me home. I truly believe that so I trust I won't be late for it, so I can stop worrying about that.... So why try? Well, again it is about the quality of life I live.

Now back to my perception of the future. I think it changed within a few min. of hearing the diagnosis. My life compressed into those 10 years. That is how I think and I guess it is probably normal for cancer patients. Jenni asked why she didn't think of us together that way? She still sees us at 70 and 80 doing what older people do. The only answer I had for her is that she doesn't have cancer. I'm still very healthy, active and with a few exceptions, normal! So I would expect her to see things the way it has always been. That dark cloud of cancer isn't moving about her all day, and I like it that way!

As I went through my day the big question in my mind was just how the revelation of how I now see my future affects me? I can honestly say not much. It doesn't depress me, or upset me or even make me sad. It just is..... I have a great life now, a great wife, kids, grandkids and a fantastic extended family. I'm 53 years old and expect to be around to see 60. I feel really blessed each day, and that is the other side of the coin. Cancer has allowed me to see the blessings and the good things in my life a lot clearer. I think I will stick to that part of all this. To keep looking at the positive each day and let the future work itself out.

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

Life is normal - As normal as it can be with cancer.

It has been awhile since I blogged. The reason is basically that nothing is really happening. I feel good most of the time. My Peripheral neuropathy is always there, but some days are better than others. We went on a Disney Cruise last week, Jenni and I had a great time, I had one really bad day with my legs. It happened to be the day at sea so I just chilled and took it easy. Jenni was a real trooper and made sure I took it easy. A very understanding wife is worth her weight in gold and my wife is worth a fortune.

Nothing new on the cancer front. I don't get tested again until March so I will have to wait and see what the numbers look like then. I still think they will be low as I have no new symptoms.

On the Peripheral neuropathy front, my Oncologist seems to think that it is possible that it is caused by a vitamin B-12 problem. Still all wrapped up in the Multiple Myeloma but it could be fixed in the short run. He has me on mega doses of B-12 via pills. I never thought I would be on prenatal vitamins but here I am. I can't see any difference so if there isn't I will have to take B-12 shots. No problem if it will fix the Peripheral neuropathy.

I'm reading a book on the history of cancer treatment called "The Emperor of All Maladies". A hard, technical read but a good read. A poet with cancer made reference to how he feels, and it describes how I feel very well. He said, paraphrased to keep it brief, is that "cancer is always reflected endlessly back at me like a hall of mirrors". It's true, I now see the world in this cancer mirror. I eat with cancer in mind, I exercise with cancer in mind, I wake up with cancer in mind and I go to sleep with cancer in mind. The mirror never really lets me just look out through the glass, to the world I use to know.

So, all in all, I feel great and I'm really doing very well. Not too much more exciting than that, and I like it that way! I'm still upbeat and enjoying my life, day by day. I will try to blog more in the future.

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