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.
Sunday, February 28, 2010
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.
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.
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.
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.
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..
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.
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.
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.
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
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
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