Balancing the drugs....

I've never been one to keep taking pills.  I took them to fix something, an infection, a hurting arm, neck pain etc.  Then off them and on with life.  So about 1.5 years ago my regular doctor and I made the decision it was time for me to hit the blood pressure medication.  So that was my first pill I took every day.  Then came the cancer and my oncologist had me start taking vitamins every day.  I had never taken them before because Jenni is a great cook and I felt I had a balanced diet and didn't need any.  I trust my oncologist so I followed his advise and the number of pills went to 4.

Then came my peripheral neuropathy and the number jumped to 5 at one time, one later in the day.  He is also having me lose 20lbs and increasing my exercise.  Jenni isn't happy about the 20lbs.  She thinks I will be to skinny. But again I trust my oncologist so I'm complying. 

After the PN pills I started feeling GREAT when I worked out.  I increased my bike miles from 11 to 21 miles and increased my ave. speed from 13 to just below 16 mph.  A much better workout. However; something new kicked in.  I was very light headed, to the point that I couldn't stand but for a few min. after the workout.  I always take my blood pressure at 30 min. post workout and it was getting down to 112/58.   It is probably lower than that when I first get back. I guess that is just to low. I made the decision to not take my blood pressure medication before a big workout.  I've tried that twice now and both times my blood pressure has stayed up and I've felt much better.  It looks like a very simple fix.  So the next question was, go off it completely?  Well I took my blood pressure yesterday after about 2 hours post workout and it was 142/78.  Still to high on the top number so I'll keep going on it, I'll just be careful before workouts.

Again, I would like to thank the other bloggers for their posts on managing their medications.  It gave me the confidence to make the change and go with it.  If their examples are any lesson, it's that I'm probably just starting down the road to managing my medications.

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

Strange Blessings from cancer....

Who would ever say that cancer can have blessing associated with it.  That would be crazy, right? However; it is my experience that cancer, as bad as it is, does come with some blessings.  I have lived my life trying to always look for something to be happy about in all situations.  I think that a positive attitude carries you further down the line than a negative one.  That being said, this has caught me by surprise. It crept up on me...without me realizing it was there.

I was talking to my pastor last night after church.  I was telling him about the people I'm met and the things I have going on, because of the diagnoses of cancer.  It got me thinking more about what I was really saying to him, and myself.  Has God really used this cancer to change my life for the better?  I have to say a definite YES!

Before I started this walk I did things in the community with my hands.  I worked on church bathrooms, I mowed lawns, painted.  I was a volunteer fireman for 25+ years.  I gave platelets to the local blood bank since I was in my early 20's.  All things I could do without giving of my heart and soul.  At that point in my life I think that is what God needed me to do.  Somethings I think strong hands are just what is needed.

About 5 or so years ago I went on a very large forest fire and at the end of it, I had the realization that it was a younger mans game.  So the fire fighting thing came to an end.  During the last few years I have noticed that the requests for these strong hands has come less and less. I've noticed the younger men being asked and I've had to jump in and say, me to!  Then comes the cancer and the platelet donations have to stop. I realized a season of my life was slowing coming to an end.  Now what!

I started to research the cancer to really find out what it was all about.  I started to find blogs and I started to read them. 

As I read the blogs, I started caring about the people on the other side of the computer! Not just as bloggers but as people.  I was worried about their daily struggles with treatment, side effects and daily living with MM.  I started to support them, encourage them, just small words to let them know I was here and I cared and was praying for them, daily!  Now I have friends all around the world!  People I care about, yes, really care about.  I've never met a one of them in person but it doesn't seem to matter.  It is a joy to read and pray for them each and every day.  What really caught me by surprise was that it started to be a blessing, to me, to do that!  To make a little difference in somebody's life.

Then came the shocker for me.  I follow a blog from a person named Dan.  Now Dan is going through his 3rd bone marrow transplant.  This time with cells from his brother.  I was reading and commenting at every blog post he made.  I would worry and pray for him as his transplant got closer and closer.  One day he blogged about something his daughter had said.  Dan I hope you don't mind me coping this from your blog but this is what it said, " Julia called me the other night, "dad, who is Steve Ritter? How do you know him?" Well, I know him only by his blog. "Well, he certainly is a nice man," she responded. Yes, all of you who continue to support us are very nice, indeed. Thank you.".  WOW... Dan & his daughter noticed what I said!  For the next two days I had a smile half a mile wide.  It really is something I can do...Support and pray.  It was and is still a blessing that Dan and Julia gave me and for that I will always be thankful.

In my research I found out that this cancer was rare and I only expected to find a few, if anyone, in my area who had it!  Well I was wrong.  There was a article in the paper from a wonderful woman who had it and she was starting a support group.  I didn't go for awhile, I didn't need a support group right now!  Next was a project I started.  I'm doing a fund raising walk/run for MM research through the MMRF.  I thought to myself "the local MM support group was a good place to take fliers to drum up more help with that!"  So Jenni and I went to the group with the fliers.  I had a great time.  I understood where they were coming from.  I got to tell my story and enjoyed listening to their stories.  There were a lot more patients and care givers than I thought there would be in our small area!  I came home and started to think, it is always dangerous when I start thinking!  My thought was "it was nice to be there on Saturday once a month but what if somebody needed some support during the rest of the month?"  I emailed the lady who started the group with the idea of starting a web page for the group.  To make a vehicle for them to get support from the group between group meetings. What a positive response I got back.  She was hoping and praying that somebody could do a web page for them!  I got busy.. The page is ready to go this week and I'm real excited to see it launch!

So, it is kind of crazy to say that there are blessings in having cancer but in a strange way it is true.  It has opened a whole new season of my life. I feel good physically so I have the ability to go out there and really make a difference in myeloma patients lives.  I'm know I'm just starting down this path but I also know wherever it takes me the blessings will be mine. God has walked me into a new season of my life. One that allows me to still use my hands but also my heart and soul. He really does know what he is doing!

Last I would like to thank all the patients and care givers that I have come to care about, Karyn, Nick, Pat, Ruth & FL in Scotland, Susie in the UK, Denise (Tim's wife), Katy here in Anderson Ca., and finally all the other people I've come to know in the short 6 months since I've started down the MM path.  Knowing you is a blessing to me and I pray each and every day that your fight, or your support of a love one fighting, will be successful and that good health and happiness comes your way. I know that it has come my way!  I'm also confident there will be more good people to get to know down the road!


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

Another very short post

I've been on my medication for a week now.  It started out rough but after a week all the side effects are gone.  My feet feel like feet 90% of the time, I've not had the latex glove feeling in my hands for several days.  Even after 10 or so hours the pills seem to be working. 

My exercising is going well.  The medication,  Gabapentin 300 MG - Twice a day, is helping me.  My legs don't have that heavy, fatigue feeling at about 5 miles.  I haven't "hit the wall" even on longer rides.   I can get deep breaths when climbing hills.  I still get tired but it is a normal tired.  More riding will help take care of that!  How much is this the medication?  I'm not sure but I'm glad to be where I'm at now.

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

Feeling great

Just a quick post today.  Just wanted to update the last post about my new medication.  All the side effects are almost gone now.  I expect that to get better and better as the week goes by.  My feet and hands keep feeling better.  I can tell when it gets about 8 to 10 hours since my last dose because my feet start heating up and my hands get less sensitive to touch.   Not even close to what I was feeling before the medication.  It keeps me on schedule taking my next dose.

I wanted to try a ride on my bicycle.  I got out about 7 miles and the wall wasn't there!  My legs didn't have that heavy fatigue feeling, my hands weren't asleep on the handlebars, and I could get a deep breath in on the hills.  I started to really push the ride!  I was enjoying being out there again.  It almost brought tears to my eyes..If I wasn't smiling like a little league boy with his first real home run!!  I must have looked silly to the people driving by.  A guy riding a bike with a great big grin.

My wife is liking the new and improved me.  She said it was nice having me back again.  I didn't realize how much this has affected me.  I'm sleeping all night and I'm sure that is a big part of all this.

So...It's Saturday and I'm off to my grand daughters soccer game.  This time in tennis shoes like a normal person.

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

Figuring out the Puzzle and learning to talk to your doctor

I got my numbers back from my blood test and most I understood.  The ones I didn't understand, I made the decision to ask my Oncologist about so I made an appointment.  Now you have to understand that I was a Marine and a firefighter.  When things hurt or you don't feel up to par....so what...  You have a job to do so get it done! When you have a fighter aircraft to get in the sky or you have a fire or medical call, you have to give 100%.  It really doesn't matter how you feel.  People are counting on you to do the job and do it well. Lives really can count on that and the good marines & firefighters take that seriously.  I have learned that lesson well and mostly live my life that way.  So when I started to have numb burning feet..well I'll just live with it.


The other part of this story is I'm smoldering Myeloma.  Read up on that and all the information says that smoldering is asymptomatic.  I should not have any symptoms at this time so it can't be the myeloma!  Well; the hot feet got to the point that I couldn't wear normal shoes.  Jenni took me to buy sandals.  I don't really like sandals.  They are never the go to foot wear for me.  Last Saturday was cold and a bit rainy.  My grand daughter had a soccer game.  I wore my sandals but by the time I got to the field I had to take them off.  My feet were on FIRE, wearing sandals!  Less than 50 degrees and here I am with a coat and waving my bare feet in the air to cool them off.  I must have looked crazy!  I made the decision to speak to the doctor about them.

Yesterday was my appointment.  I was a little embarrassed to even bring it up.  I told him my sad story and he very quickly said "Myeloma induced peripheral neuropathy"! I said "but I'm only smoldering and I shouldn't have symptoms".  He smiled and said it not that simple. Wow, what a shock that this cancer isn't simple.  We as MM patients find that out fast. He gave me a prescription.

I got the prescription and took one about 6:30 last night.  Within a hour I wasn't feeling well at all. I was a little dizzy, a little sour in the stomach and sleepy.  I made it until 9:30.  I went to bed with feet on fire and sick.  I was really upset thinking that these pills were not going to work.  Next thing I know it is 5:30 in the morning.  My feet felt like feet, my hands felt like hands.  My arms hadn't gone asleep and my legs didn't ache.  I felt rested and ready to hit the day.  Now my wife is quietly sleeping and I wanted to wake her up and scream about how good I felt.  No, I didn't do that, but I wanted too!  So I waited until the alarm went off and she had her shower.  I started to tell her how I felt.  She summed it up better than I can so this is what she said, "You're acting like scrooge on Christmas morning".  I was, I wanted to go outside and tell everyone just how good it feels to be back to myself.  Can I do a handstand now????   The pharmacist said it could take up to 7 days for my system to get use to the medication.  A small price to pay to feel this good.

On my numbers... most were up but not so much as to be a concern yet.  Renal function numbers are out of normal, but not enough to worry about.  Cancer numbers are up but going up slowly.

I guess I need to learn to not be so Marine about this stuff in the future.  Myeloma is a complex puzzle that each of us needs to put together with the help of our doctors. What happens to you may not happen to me and visa-versa...  My myeloma has a symptom and it can be fixed, if I just let my doctor know.  Now comes the hard part.  To learn what is important and what is just normal.  It's complex but I think with my wife and doctor I'll find the balance.

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

It's just a number & the blessing and a curse...

I got my test results today.  My first focus was on my M-spike... It has become my score of where my myeloma is now and is going.  It has ranged from 1.6 to 1.9.  It came in today at 2.0!  Looking at it logically it is really close to what it has been.  However; it is my first 2. I don't want a 2 in my score.  Now I also know that it varies from test to test and could be back in the 1's in 90 days.  I explained it to Jenni this way.  You have worked hard to get your weight under control.  You get down to 165.00.  You had a hard weekend and you look at your weight and it is 169.9!  Now you don't like that number but at least it didn't go up to the next level.  You get on the scale the next day and now you weigh 170.0.  Only one tenth of a pound but psychologically it is a big difference.  Crazy right???

Now I had some additional tests done.  I really didn't know what they meant.  There were several that were high and I needed to know why and what the test measured.  I went on the internet and found them one by one.  All but one said the reasons that they could be high...add several conditions that could cause it... Multiple Myeloma was always the first reason on the list.  That made total sense.

One was different.  It was a MCH test.  It was also high and I spent about an hour trying to find out what it was all about.  I finally found out when your MCH is high your B12 is low.  One of the symptoms of that was burning feet or hands!  I have been fighting that symptom for about a month now!

I called my oncologist and asked his nurse if it was a problem and should I see the Dr. about it? She said yes, with authority, and transferred me directly to the front office to get me in.  It will be nice if I can just take a B12 shot and go on with life. Myeloma can cause your B12 to get low because the cells that store it are affected by the myeloma... But... Self diagnoses using the web?  That is the curse of all this.  The web doesn't know me, my myeloma or all the stuff this cancer can cause.  They just dump all the reasons, causes and cures out there for you to figure it out on your own!  Maybe I'm right and it will be easy to fix, maybe I'm wrong and it won't be as simple.

The blessing is you can find out some things without the cost of a Dr. visit.  You hear a snip it of information and you get on line to figure it out.  The internet is always there to help. Then for some things it can freak you out!  For those times you just need to put the computer away, try to relax and trust your oncologist, the internet curse.

So I'll go and spend some time with my Dr. ask all the questions about the tests and hopefully go away with a better understanding of where I'm going...on this walk God has put me on!

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