Wednesday, January 27, 2010
it is official. my first appointment to start the transpalnt process is Feb 10. then away we go. after a week of evaluarions and medical work ups, including a bone marrow biopsy we head out on the journey. depending on the biopsy results i either get pre chemo or move right to the cell harvest. assuming that no pre chemo is needed I will go in for a few days in a row and have stem cells taken from my blood and stored in the freezer. this will be done out patient at Cancer care Alliance. The a a couple days of chemo that will KO the bad cells and some good ones. after that the good stem cells come out of the freezer. at this point my ammunities will be low and I will spend some time in the hospital at UW. after that it's home for out patient care and recovery at hopme with my loving care giver and wife Chrystal. keep her in your thoughts and prayers in case I am a whinner! :) oh and the dr says this time I will feel like crap for a few weeks from the chemo and likely will lose my hair. If that happens a a whole bunch of union firefoighters have promise a head shave.
State Workers Comp needs fixed
Regence came through with pre approval, but L&I continues to drag thier feel like they are wearing Jimmy Hoffa Sr's shoes. They still show my claim pending since 9/15/09 and are incredibly slow returning calls. after 5 days of calls they called and said we should have this wrapped up with in a week. I don't get it! What do they not understand about the part of the stae law that says, "PRESUMTIVE". brother and sister firefighters can and have died waiting for treatment. I guess they figure they can balance the budget by not reimbursing the $200,000 regence has already paid, plus the $250,000 for the transplant.
A few more things I forgot
some have asked about the treatment leading to remission. I went through 6 cycles of velcad, each cycle is 21 days with 3 treatments. in addition i took 40 mg of dexamethasone once a week. this started in july and went until Nov 27. I still take the steroids. In July my Kappa lights chains were 11,000, Thats bad! today they are 120, thats good. I feel great and while I am nervuos about the transplant Chrystal and I have talke and prayed and prayed and talked and know we are doing the right thing.
Saturday, January 23, 2010
Thursday, January 21, 2010
In mid June 2009 after 3 weeks of reoccuring migraine type headaches Chrystal convinced me to see a dr before we headed our on a rv roadtrip. I did that and found myself with abp 0f 240/120. 24 hours later i was hospitalized after blood work revealed that i was in kidney failure. aftter 3 days of tests and meds to get things under control I was sent home on a srtict renal diet told to quit drinking booze and coffee and no more anti inflamatories. at that point the dr's were think excess use of aleve over 20+ years had damaged my kidneys. yep i was an old fat retired firefighter with artritus. 12 days later i was back in the hospital because my kidney continued to worsen. My creatinine had reached a dangerously toxic of 11. I started dialysis in the hospital and got more tests. My kidney dr wasn't convinced it was just the aleve because i had high portiens show up in the blood work. he refered me to a wellknown local hemotoligist who ordered a kidney biopsy, bone marrow biopsy and a full body MRI. Now I am getting worried. After 4 days in the hospital i was sent home and started dialisys 3 days a week at the local kidney center. PS Stevens Hospital is a top notch outfit with a great staff. thanks to all the SEIU members who provide my 24 hour care. and to the hospital staff who new i was a local politico but made sure my privacy was protected.
July 15 changed our lives forever.
That was the day of my follow up appointment with the hemotoligist. Chrystal and sat inshock as Dt Rosenshein explain very carefully and compassionately that I had been diagnosed with multiple myeloma. Multiple myeloma is a cancer of the plasma cell. The estimated frequency of multiple myeloma is 5 to 7 new cases per 100,000 persons per year. Accordingly, in the United States, 19,920 new cases are expected to be diagnosed in 2008. According to a study released by University of Cincinnati, Firefighters have a 50% greater chance of getting multiple myeloma than the general population. Myeloma is a treatable and controllable cancer that my family and I intend to face head on. My dialysis continue and my chemotherapy began the following Friday. I returned to my office as my very busy health care schedule allows the week of August 3rd. Thanks to a very underrstanding staff and group of colleagues I was able to continue working. While this is clearly a “big fire” in our lives it is time to cinch up the chin strap, tighten the suspenders and stare down the red devil. My faith in God, my family and friends give me the strength to carry on. I am looking forward to seeing my grandchildren grow up.
Rumors swirl of my impending death
Druring my hospital stay rumors began to swirl around the communty that i only had months to live and would be resigning fromcoffice. Ha! people did not know this shrt irish firefighter very well. It was at that timne that I decided to give an exclusive interview to a friend and tusted reporter with the Seattle times and follow up with releases to the Herald and local weeklies. those links are here; http://seattletimes.nwsource.com/html/localnews/2009539100_cooper26m.html
Thankful at Thanksgiving
I wrapped 6 cycles of my chemo the week of Thanksgiving and the velcade and steroids worked. my bad protien light chains had beeen reduced by 99%. The Dr's welcome words were, The cancer is under control, now we need to give you kidneys a chance to stablize so we can move forward with a stem cell transplant. the following week dr Joh gave me more good news, my kidneys were rebonding and i was reduced to 2 dayds a week on dialysis. only 50% of poeple with myeloma kidney rebound and get of dialysis. the week of Christmas i wa reduced to 1 day a week on dialysis and had an appointment at Seattle Cancer Alliance to talk about a stem cell transplant on dec 31. We have so much to be thankful for as we celebrated the birth of of Jesus.
Where we are today.
I am a candidate for astem cell trnsplant and my kidneys continue to heal. My creatinine is down to 2.8 and Dr Joh is considering taking me off dialysis. My appointments should be starting at Seattle Cancer care alliance the week of Feb 8, but first my lovely wife and I are take a trip to Cancun of Jan 31. The stem cell transplant will be a grueling couple months and the Dr's have adviced me to stay away from the office. Chrystal will be my primary care giver with help from family and sister and brother IAFF members.
Randomly filling in the blanks
After my diagnosis the support was overwhelming. Brothers Rich Sewell and Pete Peterson organized a group of members from Shorline Fire local #1760 to come over and make a much needed trip to the dump. during my hospital stay members from Edmonds Fire #1828 checked up on me regularly. Special thanks to Doug Dahl and Tim Hoover for staying touch. Special Thanks to my Aide Kimberly Cole who keeps the office going during these trying times as well as taking the time talk. my good friends Ginger, Jacqui and Deanna have been there to listen cry and laugh when I call. Keven and Bud from the State Council of Firefighters, and Brother Ricky Walsh have stood by my side ready to help when I call. I think it is because they all love Chrystal so much and know what she puts up with...I could not go through this with out her by my side. God bless you all and thank you.
My next post will be when I start the transplant or maybe mexico...I will post the long hair pics before I go bald. If I don't lose hair this time its gonna get mighty long.