Sunday, November 28, 2010

it has been a while

Thought I would do a little catch up.

Thanksgiving time in 2009 I was just finishing my chemo treatments that I started i july. I got some good news, I was in partial remission and my counts were good enough to start planning for a stem cell transplant. My Kidneys had also bounced back enough that I reduced my dialysis to 2 days per week.

What a difference a year makes. Today,all my blood tests are normal and my kidneys are working well.

As we celebrated Thanksgiving I reflected on all that is was thankful for. Family and friends who prayed for me, The Drs and Nurses at Puget Sound Cancer Center, The research being done at "the Hutch", The awesome medical team at SCCA and UW.

I could go on a while, but most of all I thank God for the second chance at life.

Each day I get stronger, even though I deal with the side effects from the drugs. I have a very expensive maintenance drug that I will take for many years to come, but it is better then the alternative.

Finally, I am so lucky to have Chrystal, who has stood by my side and taken care of me all this time. I know I can be a pain, so she must really love me.

I hope all of you have time to be thankful.

Sunday, August 22, 2010

first haircut

It seems like it was so long ago, but it hasn't even been 6 months since my stem cell transplant. Sometimes I feel like the last year has been a big dream, then I go off to my next dr appointment and realize it is real. Yesterday, I had a milestone day. I went to the barber for the first time in over a year. You see when I got cancer I quit getting hair cuts knowing that one day the drugs would cause my hair to fall out and indeed it did in March of this year. The hair cut made me feel like we really were kicking butt. Even though I continue to take maintenance meds, there are still now signs of cancer and I have hair.

I also wondered what it was like when I went to the barber the first time as a little kid, which caused me to start thinking of Dr Suess. Weird huh! Anyway if you start hearing me spout Suess quotes blame the haircut.

Healing is going well and I am feeling great. My loving wife and caregiver Chrystal is getting some relief from my demands, but she still loves me and watches me to be sure I don't try to sneak anything by her or the Dr.

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" Dr Suess

Thursday, June 17, 2010

Complete Remission

June 12 was 90 days post transplant and the good news continues. 2 weeks ago I had my follow up bone marrow biopsy and today I got the results. no measurable signs of myeloma in my bone marrow and my blood tests are normal. The Doc's words were "COMPLETE REMISSION". Those are the sweetest words I have heard in a year. now we keep praying that it stays that way. Thank you all for your support and prayers over this last year. It ain't over yet but I know the Good Lord has his hands on me and the Dr's so I am feeling pretty darn good about now.

I almost forgot, my hair is coming back. color still in questions.

Friday, May 7, 2010

Dr Follow Up

Had my follow up appointment with the kidney Dr on Monday and he said see ya in 3 months! Creatinine is 2.3 and kidneys are working. my BP was a a little higher than the Dr liked so i am back on meds to keep it low.

No the really big news! My first post transplant blood work came back with everything in the normal range, including the Kappa and Lambda light chains! That means no cancer in my blood!

Sometime in June I will get a follow up bone marrow biopsy to see where things are in my bone marrow. We are winning the fight!

I returned to the office this week and did really well. still get a little tired in the afternoon, but even old guys with no cancer need a nap. I continue to get stronger with time.

Mothers Day is Sunday and it will be special! Although my mom is out of town and missed, Chrystal and I will see our girls and grandchildren, including new grandson Gunner. My mom's love has a lot to do with my strength and for that I thank her. Chrystal is a great and loving mom to our three kids and she still has time to care for me. That is pretty darn special.

God bless you all and thanks for your on going thoughts and prayers.


ps. in case you didn't see the Everett Herald, here is a story they did about my return to work.

Friday, April 23, 2010

time to catch up

It has been a busy couple weeks, so we have some catching up to do. things have gone remarkably well. I got my hickman out, I am no longer on IV fluid, and my appetite has returned to normal. On April 19th day 37 I was "discharged" from the Seattle Cancer Care Alliance" system and returned to my home Dr for follow up. My blood counts are very good and I am getting stronger every day. The SCCA folks are the best and the treatment is cutting edge. I feel blessed that I live in a place where so many advances are being made.

In the middle of all the excitement of finishing up at SCCA our daughter Rebecca gave birth on April 15th to Gunner Thor Chrisofferson an 8lb 2oz bundle of joy. He was born with more hair then me.

I took a few hours and went to the office so I could attend a hearing and vote on an important set of land use decisions. It was challenging to my strength and while i was tired after, I felt energized and healthy. I was a little tricky avoiding contact with the crowd in the lobby and hearing room, but that is what back doors and stairs are for. My plan is to start keeping limited hours the first week of May.

Yesterday I saw Dr Rosenshein for the first time since Jan and he was encouraged by how well I was feeling. Next week I see the kidney Dr for follow up. I can't wait for him to see how my kidneys have healed. My creatinine is down to 2! That's about 40% function. I thank God for healing my Kidneys. I have been off dialysis since feb.

I look forward to seeing all of you from time to time. Thank you for your continued thoughts and prayers.

Friday, April 9, 2010

Day 28

today is day 28. Yesterday my appointments went well. I am off IV fluid as long as I can maintain 87 oz of fluid a day on my own. That is a lot of pee! the reason so much fluid is to flush the toxic meds and to make sure my kidneys are clear. I am hear to tell all that fluid is ""flushing" fine and the kidneys just keep getting better.

If all goes well next week, I will be discharged back to my dr at home for follow up o the 19th. My appetite needs to continue to improve and we need to have the nausea under control. those things are happening.

I am hoping to be back in my office first week of May, at least part time. I can't wait to be back in the grind. I don't worry much about over work, because between Chrystal at home and Kimberly at the office I have a conspiracy against me.

Anyway, I am feeling good,, time to get out and about. the Dr warned that when deciding what to do and where to go to think of my immune system as one of an infant. go and do what you would with a newborn. lots of germs out there, so i got to be careful. if ya see me, virtual hand shakes work.

Wednesday, April 7, 2010

resting and healing

My days since coming home from the hospital have been spent resting and healing. I did have one minor set back and had to go to the UW for a few hours of fluid and antibiotics because my fever got too high, but all is well.

My focus is getting my food intake back up where it belongs and getting off of IV fluid. the food issue is tough because I still deal with nausea and my tummy doesn't always like what I put in it, but we are getting there. I am down to 1/2 liter a day of iv fluid and am hoping to be off that by next week.

Yes I can have visitors,as long as you don't have a runny nose, cough or fever. My biggest risk is infection and that will come from the germ filled world we live in.

thank you all again for your prayers and support. It means a lot too us.

Friday, April 2, 2010

Hospital Stay Part 2

Gradualy things started getting better, Marsha and Rebecca came by and Pastor Dennis stopped in.

When my blood reports started coming back mid week, things were looking up. My cells were reproducing on thier own. By the time I left we had engraftmeent. whites were near normal for a not sick person. plaltelets and reds were gooing up each day.

7 days at Udub Club med was plenty.

Hospital stay part 1

Hi ya’ll! Bet you thought I wasn’t coming back. Well. I’m Baaack! Anyway, I thought when I went in for my hospital stay I would be a bloging fool, turns out I was a fool too sick to blog.

On March 19th the Dr’s finally decided that that I need some time in the Hospital. In addition to the pooping and puking, I was receiving platelets and red cells to keep counts up, plus my whites were low. Oh and I decided to have a temp of 102. So off I went to UDub Club Med.

The first couple days, I was loaded with antibiotics, fluids and more platelets and red cells. In addition, they added nutrition in a bag. I looked a lot like a giant margarita.

The whole week was a blur, but Chrystal was by my side day and night. Jim Came up from Oly a couple times so she run home for a hot shower and a break from the delirious guy with a fever. I am not sure how much of my life I rambled about but I kept my poor wife awake while I talked to my self. Something triggered me to start chatting about calls I had been on with Dan Smith. Dan was a guy I worked many years and was a great partner both on aid car and engine.

Speaking of ff’s word got out that I was at UW so someone from shoreline who new someone from Seattle made a call and I get a surprise visit from E17 and L 9. A visit in class B uniforms no less. Lt Mc Lennon is a friend a I owe her crew a special thanks. They brought a smile to our faces and hearts that only sister and brother ff bring each other. The crew also brought me a winter hat which was perfect because I had lost my hair.

The hair loss saga was another kind of fun part of being sick. I wake one morning and my pillow is matted with hair, my hair! so I run my fingers though my locks and come out with a hand full. My nurse Geoff says we have clippers for that and set up a barbershop in the room. the rest is history.

Geoff was a great nurse by the way. He walks in the first day he is assigned my room and says, “the nurses are all saying you are a tough guy and wait to long to ask for meds, so here’s the deal ya won’t better that way, I am your tough guy I am like your holigan tool you need something You get it.”

Wednesday, March 17, 2010

dealing with the uncomfortable stuff

well it's the end of day 5 and the last couple days have been a challenge. most of my time been spend dealing with two words that start with p or if you are the less graphic type words that start with d and v. Anyway those little discomforts were expected and will last a few days. i gotta say the last time i vomited as much as yesterday was many years ago and involved irish whiskey and firefighters.

anyway my blood counts continue to drop and will until about day 10 so then things begin to improve. my weight has dropped a little from low fluid and barfing so i now get 2 liters of iv fluid a day at how. still better then the hospital. at home i sleep next to my care giver. in addition to fluid my red cells and crit were low so yesterday and today i got some fresh red stuff. my whites are low enough that i am now on super high dose antibiotics and need to stay out of the germ filled world as much as possible. my platelets are not yet low enough for platelets but the soon will be.

Other than feeling like crap today was a happy st paddy's day. i still have my red hair chrystal cooked a corned beef. i had a little slice and we froze the rest for a day when i can enjoy with a guiness. Guiness has to wait for immune system rebound. I only get pasteurized beer.

finally yesterday my loving wife cared for me and cleaned up after me on her birthday. we had planned pizza and a movie At home but sometimes stuff happens. I felt guilty all day because i couldn't do for her, but at least i wished her a happy birthday first thing in the morning. the Lord has blessed me with her.

Sunday, March 14, 2010

Day Zero Big Success

Friday was a long but successful day. Because of by kidney's I go an hour in between each bag of cells. there are 4 bags of cells..2 hrs of hydration first, and 4 hours hydration at the end you do the math. Bottom line we checked in at 0730 hours and out at 1945 hrs.I got a prize of a little extra fluid cause my blood pressure was a little on the low side.

just prior to giving a bag of cells i got some drugs for nausea and possible allergic reaction. just like clock work I go a tickle in my throat and nausea. good thing the drug was there. One interesting side note, remember the controversial pain med from a few years back called DMSO? that is what the store stem cells in when they are frozen in liquid nitrogen.

day 1 and 2 have not been with out challenges. my gi tract seems to be confused about bodily so I am still dealing with outhouse trots and a little vomit. Hope this isn't TMI as the kids say.

Today when i went to clinic my pressure was low again so Chrystal has me hooked to the fluid pump. I wounder if these bags come with wine in them?

anyway it's all in a days work toward recovery. i will have good and bad days but once engrafting happens it is all good.

Bless you all.

Thursday, March 11, 2010

a day of rest, so I did

Yesterday, Wednesday was chemo day. We had an early start at 7:30 a.m. first blood draw then hydration and anti nausea meds. the chemo it self was a pretty short part of the day. then more hydration. before going home Chrystal was trained on the use of the portable pump so i could get fluids at home. So, I carried my liter bota bag home and spent the next several hours getting fluid. Oh I forgot the ice chips...30 minutes before my chemo went on and for 6 hours after I sucked on I chips to freeze the inside of my mouth. research at SCCA has shown that this reduces mouth sores from the chemo.

Speaking of side effects, things are tolerable so far. Had a little bout with the back door trots yesterday but that has calmed for now. The anti nausea med seem to be doing their job for now.

Today, we went in for a blood draw and check up on the day of rest. all of my blood counts continue to be good, with some encouraging news on kidney function. I have been off dialysis now for 2 weeks and my kidneys have improved. My creatinin is at 2.5.

the rest of today i layed low and took a couple naps. napping makes the nausea better. :)

Tomorrow is the big day starting at 7:30 a.m. and we will be there for 12 hours.

Monday, March 8, 2010

Dr Bensinger thinks I am nuts.

Today we went through the the next few weeks in great detail. Dr Bensinger went over the chemo treatment telling me why my dose was one day instead of two. Because of my kidneys he did not want to risk loading in with "toxic stuff". Then he talked about how they would give me back my cells over a longer period of time on friday again to protect kidneys. I'll get lots of extra fluids in order to "flush" the uneeded "blood garbage" through the kidneys. those are the doc's words not mine.

We went over each med and all the sideaffects in great detail ncluding what to expected at my low point next week when my blood counts are zero. and then how i would improve.

After all the explaination he asked me if I was ready and I said, "it sounds like a holiday, let's go." he and the gold team nurse about fell out of thier chairs at my sick humor. Chrystal just shook her head.

it's officially a go!

Sunday, March 7, 2010

a weekend to relax sort of

I have cancer, I've been through chemo, had more needles than any on person deserves, been on dialysis, been poked, prodded and examined, but what causes the most stress of all? My dental appointment!! Friday we went to the U of W to have what was left of a broken tooth pulled. It needed to be done last spring, but I got multiple myeloma along the way and my world changed. So, I sat like a big boy while the dentist chipped and chiseled until he got the roots out, using only a local. The dentist was good and a funny guy but he will never be my friend because he is a dentist.

Sat i had only had to go down and get my blood drawn and Sunday we had no appointments, so it was a weekend of hanging out with my sweetheart and catching up on rest. also doing some planning to get the house ready for post transplant recovery time. Sunday we had Princess Trinity here so her mommy could deal with some health problems.

Things are going quite well with Chrystal flushing the hickman and doing dressing changes. She is a first class health care provider. It is a good thing we have so much love for each other, cause we are discovering that routines need to change. I am slow to change, but she approaches it with grace and love and things work out.

She is an amazing woman to be managing this stubborn redhead. I try hard not to be cranky pants. :) It is not always easy to literally place your life in the hands of others, but I know God has surrounded me with people to care for me.

Thursday, March 4, 2010

short day not much to say

today was the first of 4 days of lab draws and that's about all. the stem cells are collected and the plan is in place for me to see my Doc on Monday, but first i have a tooth getting pulled tomorrow,then daily lab draws over the weekend to make sure my red, white and platelets are bouncing back ok. Chrystal is all signed off on flushing my lines and changing dressings. I got a different dressing today to try to speed heeling a little.

Unless something changes, next wed and thursday are the chemo days and friday is day ZERO! Yippie! The day we have been waiting for.

I may not blog the next few days because action will be slow and i need some quiet quality time with Chrystal before things start getting intersting.

Wednesday, March 3, 2010

Cells are collected

Woo Hoo! cell collection was a great success, so i will stop whining about the "Bone Pain". Today I collected 6.7 million stem cells for a total of 12 million. I only needed 10, so unlike the county and state budget, I have a surplus. I have already signed up to give some to the Hutch for research to help others down the road. I wonder what they will learn from studying the stem cells of a crazy guy like me.

Took a little nap this afternoon and then went see my union brothers and sisters down at the union meeting Shoreline. it was good for Chrystal and I both to have that time to "do our own thing".

Tomorrow, and for the next few days i have daily blood draws to see how things are. my platlets were a little low today, but that is normal and they will bounce back.

Tuesday, March 2, 2010

the "Bone Pain" was worth it!

first day of stem cell collection was a huge success. The goal is to collect 10million cells. we got 5.6 million today, so if all goes well we only collect tomorrow. cell collection is a lot like dialysis, you are a 4 hour ride to nowhere. as usual the staff was great. the rooms are private and we have the same nurse the whole time. Dr Bensinger came by to say my numbers were awesome and cell count was higher than typical. That was pretty exciting. so all that pain i had was worth it because once again my body beat the average. So far the platlets are good which means no transfusions for now.

If all goes well we are on track to have day Zero be the end of next week. Day Zero is transplant day. first i have a tooth that the dr wants pulled to reduce infection risk. Than happens friday, then they need to let it heal for 4 or 5 days. after that 2 days of scorched earth chemo then the transplant. woo hoo!

stay tuned for the wild irishman in a pony tail pic to be posted. once the chemo happens who knows what will happen to my hair. Chrystal is making me some designer doo rags, just in case i go bald.

All of my treatment so far is out patient and will continue out patient unless i get an infection or something.

Thanks again for all your support. together with Gods help we are winning.

Monday, March 1, 2010

cells growing like dandilions

the growth factor shots are going well. today was day 3 and tomorrow at 7:30 am we go on the machine to to collect cells. today my cell count was so good they almost decided to collect today. it is an interesting process, the shots don't hurt but the side affect "bone pain" sucks. and i haven't grown an inch. so when i ask the nurse what is "bone pain" she responded by saying it is like the pain you have when you work out too hard or an achy flu pain, then she added how you feel after the first long motorcycle after a long winter. Chrystal laughed out loud. anyway it is more like how you feel after fighting the biggest fire job of your, humping hose for hours. I have never gotten to a 10 with back pain until last night. the pain is mostly in the large flat bones because that is where all the marrow is.

shortly after my kids left i had a small low back ache in my hips and lumbar...soon after it radiated up from my butt to my neck and shoulders, then the pain started in my sternum and ribs....was not continues off and on, but we are managing it with VICODIN.

Oh well pain is weekness leaving your body and in the end it is helping me kick myeloma's butt.

Thanks for all your prayers and well wishes. God has blessed us and has his healing hands on me.

Chrystal is a rock star,I have been a little grumpy, but she continues to care for me and makes sure I am comfortable. I am blessed she loves me so.

Sunday, February 28, 2010

hickman in mobilization starting

well the Hickman is in my chest and after a day of pain that is settling down. we had our first lesson so chrystal can care for the catheter. Once again I can not say enuogh about the great staff at SCCA. They are a God send. Dr Petty who put in the Hickman spent extra time with us explaining what was going to happen, then met with chrystal after and showed her the pictures of what he did.

My growth shots started on saturday and continue until we are done collecting cells. They will collect enough cells for 2 transplants...that would be 10 million cells. cell collection should start tuesday or wed, things changes fast though. the growth shots still come with a needle and are given sub Q in fatty tissue. no not my butt. :) they go in the back of my arm and i did not cry.

Thursday, February 25, 2010

things are movin fast now!!!

Today was another awesome day with great news. Me with Dr Bensinger today to make the final decisions on my treatment plan. First words out of his mouth were, "you really don't need dialysis unless you like it so much you want to keep going. I addition he said that my kidneys good recover more after transplant. I like this guy. so no more kidney dialysis. as a reminder I had near fatal toxic levels of creatinin in July and was told that less that 50% of myeloma patients with kidney failure ever get off dialysis. Well we showed them! Thank you God.

Next the Doc went over my numbers and test results. Very small amount of myeloma in my marrow and blood...MRI showed no damage to bones. X-rays showed a very small lesion on my skull, not growing not a big concern. so, we go straight to cell collection and skip the first round of Chemo. Tomorrow I get my Hickman line, then on Saturday they start mobilizing my cells with with growth factors, that is daily doses of a growth hormone for 4 days. My sister Beth wonders if I will get taller. Not sure about that but i certainly won't pass a drug test in the Olympics.

Next tuesday, is cell collection day. if they don't get enough tuesday then we go back wednesday. Thursday or friday i go in for oral surgery to have a broken tooth pulled to reduce risk of infection post transplant. after that heals a few days we do the transplant. Dr Bensinger is a great Doc with a good sense of humor. He looked at my long hair and said "you know your are gonna lose that head of hair." I laughed and said that is part of the plan to kick this cancers ass!!!

God Bless you all and thanks for your continued prayers.

Tuesday, February 23, 2010

A long Tiring day

after Monday when I had one appointment, today was a marathon that brought great news at the end of the day. Yesterday I only had to go in for a bone density scan of my hips and spine.

Today started early with my blood draw then off i went to see the dentist. The in addition to a discussion of how to take care of my teeth and mouth during this process, the dentist decided during her exam the the broken tooth that needed to be pulled before i got cancer still does and should be done now to reduce the risk of infection while my immune system is compromised. Oh well. then off we went to take classes. first a very informative class on food safety for transplant patients, then a class on home care during recovery. these were very helpful especially for Chrystal who will be managing me during all this...Pray for her strength in managing me! :)

next we went for our appointment with out PA and Nurse. after the routine check in and a needed culture from both ends to see I am carrying bacteria, the PA went over our lab and test results and discussed the treatment plan. Great news. myeloma cells 99% gone!, the MRI showed that there were no lesions in my bone which means myeloma has not affected my skeleton. what ever showed up on the xray was not confirmed by MRI. probably just a knot on my stubborn head. All this means that i skip one round of chemo and go right to the growth factor shots and cell collection. I see Dr Bensinger on Thursday to go over the plan, but as it looks now they will collect cells one week from today. Dr Bensinger by the way is MR MYELOMA doc at Hutch. Having him as the rotating doc right now is a God send.

Things are going to go fast and furious for the next week or so starting with having my Hickman don on friday then having growth factor shots every day for 4 days, then thy collect my cells every day until there are enough. the PA says probably 2 day. after that the tooth comes out before the transplant. I will do myu best to get something posted everyday but no promises. No post means I am just lazy or tired not that things have gone to crap. :)

on another note my firefighter union brothers came over today and installed some motion sensor lights on the back porch to provide a little extra lighting out back. once again a sign of the brother/sisterhood that we have in our great union. or maybe it's cause two of these guys were probbies on my engine way back when. Thanks again Pete, Rich and Lee.

Sunday, February 21, 2010

day of rest

What do you do on a sunny day when you have no Dr. appointments? spend some time with your Grand Daughters! Today was an awesome day with the execption that Jim and Thomasina didn't come up because of colds. after Church we had a visit from Marsha and Trinity...Trinity had a big hug for me and we sat out in the sun and visited before they went to the park. Marsha brough me a blanket from Linfield which I will enjoy having during my rehab.

Later in the day Rebecca, Eric and Caitlyn came over and stayed a couple hours. I had not seen Caitlyn for a couple weeks so it was special indeed. She always has a smile and hug for grandpa.

Family is an important part of having the stength to heal and God has blessed us with a great family.

Friday, February 19, 2010

Good news day

Today was a good news day...We started out with the routine blood draw, then I was introduced to a computer self reporting system in the test phase...It is designed to let me answer a bunch of questions that i might not remember to tell the dr. Whatever?

Next we were off to see the nutritionist. We got a lot of good info on managing meals and also had a conversation about balancing my needs on chemo and dialysis. it will be most helpful when treatment starts.

Finally we met with the Dr, PA, and nurse to get the results of all the test from the last week and half. Heart - Great, Lungs/pulmonary function - outstanding. Bones showed some density issues that need more eval and perhaps medication to strengthen. Just a reminder multiple myeloma causes reduction in bone density. I addition there is a sign of a very small spur or lesion on my skull.. So where is the good news?

The marrow biopsy and blood test shows less then 1% myeloma cells..Thank God!!! That means what has been done so far worked and as the dr put it the stem cell transplant is like whacking the myeloma on the head with a hammer.. The other good news is that my kidneys are stable and still appear to be healing. In addition, after we see the dr next week we could go straight to collecting cells and bypass the round of chemo the could damage my kidneys. Praise God! At the end of he day the medical team was very impressed with how I am doing.

Next week things are gonna happen fast, with a coupe more tests, a dental check up and the conference with the medical team to set the treatment schedule and on Friday i get my Hickman line. As a side note Dr Hickman lives in Edmonds and I participated in the ribbon cutting at the newest City Park, "Hickman Park". I met Dr Hickman that day.

Our prayers are being answered and we are blessed to be in the city where some the most progressive and innovative cancer treatment and research in the world is.

Thank you all for your support and prayer.

Thursday, February 18, 2010

more fun at SCCA then some sun

today we started late and ended early. first appoint was 11 am so i got chance to spend the morning enjoying the sun shine in my kitchen window while i did a little county business...

SCCA was a pretty easy day, started with e-rays of head, neck, back, legs, and arms. then I took my lorzapam to get ready for my mri...yes i am a chicken in that tube. you would think after a career in firefighting that wouldn't be an issue, but in a fire i wasn't tied down and could crawl away. so he mri lasted 30 mins and was pretty much full body. today the were checking to see if i have had bone deterioration....maybe the will discover i am short too. :)

home early got a nap since last night was no sleep steroid night. now hangin out a the house relaxin..

Wednesday, February 17, 2010

another day, more tests, yea

Today was another fun day at SCCA. Adding to the excitement is that this steroid day, woo hoo!

The caboose felt much better today with little soreness. It will be as my baby sister say, "worth it in the END!"

Today began with an hour long pulmonary function test. this is the most comprehension eval I have ever had. the end result is that my lungs are in pretty good shape and that part of my system is working well. I am impressed considering 2 visits to er during my ff career for smoke inhalation. i guess the Shoreline medics and Harborview ER done good back in the day.

next were a couple of rather informative and non eventful meetings. firs it was with Gold Team Social Worker, Angelica. Really that was her name. We talked a lot about emotional and spiritual needs as well as all the services they offer to family and that the clinic has shrinks available. Honest, I didn't try to act crazy!

Finally we met with Gold Team Nurses and went over up coming test and events. spent a fair amount of time with Chrystal talking about home care works and how successful the out patient focus is they were impressed with how well prepared Chrystal is to be a care giver. we also talk a lot about visitors and how to manage them. I made it clear seeing my Grand babies was a priority..That won't be an issue, but guess what, Caitlyn and Trinity will have to wash their hands and face before giving grandpa a hug and kiss...guess we see how that works. the option is hugging but no kiss on face. anyway we will make it work. Grandpa will not be denied having loves from my babies. :)

oh, we also got approval for adivan before the mri tomorrow. :) such a baby!

had a short nap this afternoon while Chrystal took the time to see her Dr for a routine appointment. I pray that God keeps her healthy through this. She is my Rock.

We capped of this beautiful, Edmonds Kind of day with a long 45 min walk i. downtown Edmonds.

Blessings to you all.

Tuesday, February 16, 2010

My Caboose is sore

After a relaxing valentines day and presidents day weekend with no medical appointments, today started early and ended around noon leaving me feeling like like my jr high PE teacher worked me over with the famous split paddle. a paddle your were required to sign after you stood up and shook hands..enough flashback. We started the day by turning my 24 hour urine collection then had 10 tubes of blood drawn. before leaving the lab I donated a random pee sample.

The most exciting part of the day with out a doubt the bi lateral bone barrow biopsy. the meds made it feel like pressure not pain, but it was as if my friends in the trade unions had some might large tools digging in my butt cheek to get a little marrow and core sample from my hips. adivan, fentenoyl and lidocane made things a much happier experience.

Got home around 1 and took my nap after which the drugs had worn off. so all evening i have been a big whiner with ice on my caboose. one side is screaming extra loud because they had a trouble getting a big enough sample. Big enough? it felt like they wanted the whole stinking hip.

Chrystal continues to be my rock and once again met me with a smile and a hug when it was over. Pray for her strength she puts up with me when i whine.

Friday, February 12, 2010

Days 2, 3 and other stuff

Days 2 and 3 were rather uneventful. more tests more meetings. Starting to feel a lot like being at the office. On Thursday, I had an EKG the an Arrival Meeting with the Gold Team Attending Dr. we went through all the details of how the transplant will go and how the tests will be used to determine the plan when we meet again after the results come in. Because of the possibility that the chemo could cause my kidneys to not work as well again he is recommending that I stay on dialysis until after the transplant. I see a UW kidney dr in the near future and we will talk more.

To cap off the day Thursday we met with the finance office. Woo Hoo! I guess they need to know who's paying the $250,000! The answer is not me! Thank God that the legislature in 2003 make Myeloma a presumptive occupational cancer for firefighters and my claim was finally approved. So for those of you who care about health care the cost of my cancer will be over $500,000 when the transplant is complete. How do people get well when they are not as fortunate as me?

Today started early with a trip to UW Hospital for a Echo cardiogram, then back to SCCA for a chest x-ray and dental x-ray. I am looking forward to a slow weekend, only 4 hrs dialysis tomorrow and then a couple days of rest. I hope I get a chance to see my granddaughters.

We also made a stop at the family resource enter and picked up a few books to share with friends and family.

Next week starts with the big important test a bi lateral bone marrow biopsy. yep that's right a needle in both cheeks. I will check in early so I can get high before the do the thing then come home and rest.

Chrystal continues to stay strong and is always there waiting and smiling when i come out of a room. she gives me a big hug and we head to the next appointment.

God Bless you all and thanks again for your prayers.

Wednesday, February 10, 2010

Day one moving toward transplant

here we go! Today after working a couple hours at the county and voting on a few issues Chrystal and I headed to the Seattle Cancer Care Alliance for a busy day. The part of the process we are in for the next 7-10 days is called staging. Today started with a blood draw, 5 blood tubes full, and then a break for lunch. After lunch we hung out in the 6th floor lounge/waiting room and relaxed to a great view of lake Union. Our afternoon included a full work up including ALL of the man tests. Then we met one of our Team nurses, Jen and learned we are assigned to the "Gold" Team. SCCA uses a team concept and I have the same nurse, social worker, scheduler, and pharmacist through out. the Docs, PA's and Fellows, rotate monthly. our discussion also included lots of paperwork, more discussion of medical history and orientation... I am wore out and have homework before our first appointment at 8 am tomorrow.

During the rest of the staging period we meet with our Doc, a dentist, a kidney Doc, have a cardiac work up, pulmonary, function test, 24 hour pee collection, and a bone marrow Biopsy. plus the social worker, finance person, nutritionist and maybe a janitor.

Today was awesome! I thank God for the care I am getting. they even offered to have someone work with us on communicating with our Grandchildren about cancer. Everyone is polite professional and customer service focused.

Thank you all again for you love and support

Wednesday, January 27, 2010

stem cell transplant ready to go and other stuff

Transplant is set
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

things I keep forgeting

during my time as a state legislator I co-sponsored bills to make certain types of cancer presumptive duty related diseases for firefighters. Multiple myeloma was one of those. never in y wildest dreams did I think that one day i would be making a claim. to all of my brothers and sisters in IAFF who fought so hard and to the legislators who voted yes. thank you....just today i found out about 2 more ff's with cancer. we must continue our battle.

Thursday, January 21, 2010

catching you all up

As many of you knowI have been battling Multiple Myeloma since July of 2009. I hope this blog will give you a look at what my battle has been like and give hope to others who fight cancer. This first entry will catch you up on events since June of last year then I will make entry as things progress.

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;

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.