June 14, 2009
The diagnosis of Multiple Myeloma began in June of 2008. Tracy and I were out kayaking and I went to pull a kayak out of the lake and I had an unbelievable pain in my right chest, it dropped me to my knees.
I went to one of the staff doctors and we
decided that it must be a pulled muscle and treated it with ibuprofen and I got better for a while.
I have this weird sneezing when I go out in the sunlight, and when I would sneeze it would hurt like the dickens. I went for an annual physical in August at my regular clinic and we also determined it must be a pulled muscle, more ibuprofen. The sneezing and pain went on until January when I finally went into on of our staff doctors and explained the issue. Loking back at my facebook page I noticed that one of my comments was that i had my third cold of the year and I never got colds in the past. The staff doctor order an x-ray, well the x-ray showed a mass about 3″ x 1″ on my fifth right rib, a CT scan followed, then an appointment with a thorasic speciaist, another CT scan, then an oncologist – finally a diagnosis of multiple myeloma was made in February 2009. Since then it has been a whirlwind of tests, blood draws, MRIs, kyphoplasty and vertebroplasty, transfussions, questions, misinterpretations by me, internet searches looking for answers, etc. I have been on short-term absence from work since late March 2008.
I started out taking Revlemed (25 mg for 21 of 28 day cycle) and Dexamethasone (40 mg day one of each week), funny thing is Dex comes in 4 mg tablets so i take 10 every Friday if I don’t forget – Tracy usually makes sure I take my meds. This is referred to as Rev-Dex.
On June 10 I went to Mayo for follow ups and the doctor suggested that we change the meds to Revlemed (15 mg on days 1-14 of 28), Dexamethsone as before and we added Velcade on days 1, 4 8 and 11 of a 28 day cylce. This is suppose reduce the fatigue and anemia that I was experiencing, no more blood transfussion (6 hours of sitting there watching TV, as if I haven’t had enought of that). I will be on Rev-Dex-Vel starting June 19 in preparation for a stem cell transplant. My M protein levels have dropped from 10 in February, to 2.9 in mid May and then 2 on June 10 – I don’t know the units or if the line is linear or quadratic but I really haven’t had any side effects from the meds – at least any that I can pick out of prior life. The one side effect seems to be that my appetite has gone from conservatively consuming 3000 calories per day down to about 1500 (maybe). I have lost quite a bit of weight, 232 lbs down to 188, pre-college weight, pants size from 36 (38 if I hit the buffets the day before) down to maybe 32/33.
The complications that I have had were the result of the back work that I had, kypoplasty and vertebroplasty and also some contrast being used for a CT scan that I had during an emergency room trip for back pain. The Tuesday after the kyphoplasty on March 19, 2009, I had severe back pain and went into the ER where the contrast was used in the CT scan, bad decision. I went in again on Friday March 19, 2009 with more severe back pain with creatin levels at +3 (don’t know the units) but normal is at 1, again don’t know if this scale is mathmatic, geometric or algorithmic, but 3 must be really bad.
I was admitted and the team of doctors spent 1 week just getting my creatin levels down and my kidneys functioning peoperly – the kidneys did return to near normal levels and I have been right around 1 to 1.2 since then. I did spend ~3 weeks in the local hospital trying to get the kidneys working and managing the pain but never really addressing the cause of the pain other than 10 sessions of radiation. Tracy contacted my doctor at Mayo and lickety-split I was in the Kindred ambulance, juiced up with pain meds heading to Rochester – quickest trip I ever had. What is that old saying -taking a trip and never leaving the farm! – it was a blur! I think I got down there on a Tuesday, was admitted to Mayo Mehtodist, had and MRI and vertebroplasty and came home on Sunday. Since then the pain has subsided considerably and I am recovery from spending ~ 1 month laying flat on my back.
Once I got home in early May, we (Tracy and I) reduced the pain meds from a fentanyl patch and methadone down to Tylenol (generic naturally). I can not believe how weak my back became after this time. When i came home form Mayo I used a walker but that was too diificult to get around in so I got a hiking stick from the sporting goods department and now for all of June I have not used anything but I walk funny and really slow, bending is diffucult. I have had a lot of help from everyone in the family doing some of the most basic things in daily life, like putting on shoes and socks. Tracy usually took care of this but when she had school or work (yes she started a part-time job along with taking care of me and the kids) but Kasidee has helped with the show thing many times and Savannah and sumner also pitch in if need. Sumner, Savannah and Kasidee also help alot on other daily things like getting me water or juice, cleaning, mowing, getting me snacks, etc. I wonder daily where i would be without have great support of my family and friends. There is no way I could even function with out Tracy – plain and simple, I couldn’t shower with out her help, get to my dr appointments, prepare meals, etc. Kasidee, Savannah and Sumner have given alot of there time to helping me, at times it doesn’t seem fair that kids have to be impacted by this. Jim and Sandi G and my folks have made trips to visit me in the hospital and also after I got back home to help clean up and fix things that always seem to need fixing around the house. Mom and Dad came down shortly after I was admitted on March 27, right during the flood time and helped get the basement seepage problem under control and Tracy with the kids, then Jim and Sandi came the next week and helped Tracy with the kids and the basement and other things around the house, they even took the girls for a couple of days while Tracy was with me in rochester. Jim and Sandi came again after I got home and helped organize and put in a new sump pump and tear down some gyp-rock that got wet when the sump failed. Where would we be without them – it is scary to even think about it!
A couple of funny stories that I have – at least now – from when I was in the local hospital include:
*During my stay Mom and Dad were there the day after I was admitted, Jim and Sandi G came the next week, my brother Brian and his wife Andrea happened to stop by (they live in Minot), people from worked showed up to visit, Joe H even spent and evening watching a movie that he brought in, our pastor John B stopped by regularly, the hospital chaplain Dwight M also stopped often. None of this was rally too out of the ordinary unless you are laying flat on your back in pain with all kinds of meds and drs coming angoing all day. I was convinced that I was at the end of my rope and would try to trip Tracy up with directed lines of questioning, so subtle some not so subtle. Funny what happens when I have a little too much time on my hands – I was absolutley convinced that the drs had told her something and I wasn’t going to make it out of there. I should have recorded my rounds of questioning in my drug induced stupor, I am sure that Clarence Darrow and William Bryant would have been pround of me, at least Marcia Clark!
*After a couple of weeks in the hospital I was getting a little cranky, people were poking and prodding, I had a plastic turtle shell on my chest and back and would get slid around like a hockey puck by the nurses, Tracy, the crew that transported me to radiation and the radiation team. I really could not move off of my back without extreme pain – even on meds. Well anyway the pain meds must really affect that filter that keeps you from saying dumb things even though you maybe thinking them, rember I was a little cranky, a couple of weeks in the hospital already, pain, pain, poking and prodding, seepage in the basement, flood coverage on TV, weeks without pay from work, mortgage, you name it.
Tracy had been doing everything she could to make me comfortable, fluffing pillows, helping the nurses roll me over, shaving me, helping shower, ou name she did it all! One evening she was doing all of the bove and I really just wanted to lay there and watch TV but that desire hit the old filter, went right through it and came out as “Do you know how annoying you can get at times?” Not really what I meant. I got a somewhat dirty look from Tracy, a gasp from the nurses, and then I realized what I said and tried to pull it back, too late it went though the filter. Tracy took it well and I explained what I really meant and we had a chuckle about it. The nurses developed a new understanding of me, that I wasn’t really as smart I made out to be!
The people at work have been super, with understanding FMLA and short term disability, long term disability, gift cards, flowers, cards, benefits, visits in the hospital, etc.
The people from our church have been wonderful, with prayers and offers of help, they even came and helped with the seepage in the basement and offered to come and help clean up! My Aunt Barb has also had prayers for me at her church in Minot.
There were times in my life that I felt so alone, but with the outpouring of help well wishes and prayer, I feel like I have started a new life. One with new challenges but one that I can control, enhance and enjoy.
For some one that always thought they could run faster, jump higher, hit the baseball further this cancer has given me a new perspective on just where I am and what is important. Tracy and I celebrated our one year anniverary in May, Kasidee and Savannah are super and Sumner has lived with us since August. What more could I want!
I have included a link that kind of sums up how I feel, please understand that I am not the Iron Horse, did not play for the Yankees and have 50,000 people greetig me when I got home but the feeling is the same:
I am scheduled for stem cell transplant at Mayo in the future and will keep this page updated as I learn more.
I have been trying to chronicle our lives with short videos on you tube at http://www.youtube.com/watch?v=BylRwqKqlic&feature=channel
There is a link on the right that has all of the videos I have added to you tube if anyone is interested!
More to come later!