Shingles !!!

All was well and I was doing great. The minor problems that I have really don't hurt so I'm good with them. In fact, my Dr. and Oncologist always knew my response when asked how I was doing. It was always "Great, and what I do have doesn't hurt so I'm good". Well I really can't say that now.

It all started this last Tuesday at the gym. I use a heart rate monitor with a chest strap sending unit. I noticed that the skin under my strap really itched and hurt. My thought at the time was I needed a good cleaning of the strap. The next morning I got up and my skin continued to hurt. Wednesday afternoon my skin hurt more and I noticed a rash starting. I was still thinking that it was because of the dirty HRM strap. About an hour before bed on Wednesday I started having right lung pain. I took some Ibuprofen but it didn't even touch the pain. To get some sleep I took some codeine. I also noticed my rash was growing and starting to really bother me more. Thursday morning I got up and noticed my rash was growing all along my chest back to my spine in a mostly straight line. The codeine seemed to keep the lung pain under control and I didn't have a fever or a cough so I was just going to Marine up and wait until my Dr. visit the next Tuesday.

Well, a blog friend of mine, Big EZ, also has MM and blogged the fact that he had shingles. The more I read the more I kept saying to myself... Yes - I have that, Yes - I have that, etc.. So I emailed him and he encouraged me to call my Dr. right away and get in. I did that and his nurse said I would be in the office that evening. By the time I got there my chest hurt so much that I could barely take a breath. My Dr. looked for about 2 seconds and agreed it was shingles... Now with an anti-viral and a big bottle of codeine I'm on my way to getting better. The rash is still in the growing phase but my pain is under control. I went ahead and took a sick day from work so that will give me 3 whole days to get back on my feet.

A BIG thank you goes out to The BIG EZ.. for his help and support. Blog friends can get a great source of knowledge and support and I'm truly thankful for all my blog friends. The next 3 weeks won't be much fun but all in all I'm doing great. A small set back but it doesn't really change the larger picture.

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

All Clear for the next 6 months

Final visit to my local Oncologist today. That after my Free Light chain test and Bone scan. She said I was doing great and they will continue to watch me.

Not sure if my bone scan was clear because I forgot to ask, but she didn't say anything about it, so no news is good news. I will get a written request from the imaging clinic so I will know for sure then.

My Free light chain was about the same:

My kappa is high 23.42 (normal is 3.30 - 19.40)
My lambda is low 3.96 (normal is 5.71 - 26.30)
My ratio is: 5.91
My last kappa - lambda ratio was: 4.1

So it is up a bit, but nothing she was worried about.

I'll just relax for the next 6 month and enjoy life.

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

Stable

The visit to UCSF is over and all my numbers are good. The cancer hasn't started to run crazy yet so that is good. The only issue is my peripheral neuropathy. Dr. Martin had a lot of questions about that. Because I'm smoldering I shouldn't have any peripheral neuropathy. Well I do, and I went over it and that was that. Until last night at about 6:30 Dr. Martin called me at home to go over it again. I think the basic feeling is that the peripheral neuropathy isn't myeloma related. He is going to have my local oncologist refer me to a neurological specialist to run some tests.

One thing that is new to me is having so many doctors. I have spent my whole life just working with one, my GP. Yes, there was the occasional referral to get something specific done, but it was go there, get it done and move on. Now I have 3 Dr's that I see fairly regular. I just can't see adding another. Plus, they all want time lines on when it started, and that gets very confusing because the MM diagnosis and all that happened after that. I just get things mixed up, forget important parts.. well you know the story.

The cost thing set aside, I really don't know which way to turn. If, it isn't the myeloma then I wonder how important it is to really figure out what is causing it. I'm fairly well controlled on the medication my GP has me on. I can live and exercise almost normally. If it is the myeloma then I'm not sure a referral will help.

So, I guess I will go to my local oncologist the end of the month and ask some very direct questions about this. I hope that this gets settled quickly and finally.

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

It's Over

Just a short note to let everyone know I made it through my bone marrow biopsy. To say "I made it through" isn't really correct, it wasn't really that big a deal. They are real pro's at UCSF and everyone I came in touch with did every thing they could to make me comfortable. Bone Marrow Biopsy's aren't pleasant but compared to a lot of things they really aren't that bad either.

Hip is a little sore but I was able to ride 16 miles on Friday, the day after my biopsy, and 38.5 today. So I guess I'm back to 100%.

I will know the results in a week or so. I see Dr. Martin on Nov. 1st. to get the Dr. eye view on all this.

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

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...

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...