One thing Dr. Efebera said yesterday is that, based on the x-rays and bone marrow biopsy the diagnosis might be Smoldering Myeloma. It doesn't change the treatment or prognosis. It's just a description of myeloma before its full-blown cancer.
I think what it does prove is that I'm smokin' hot....just like Ricky Bobby's wife, though, perhaps, he didn't describe her that way because she had a life-threatening bone marrow disorder.
Whatever...I'm going with smokin' hot--medically proven!
Friday, March 08, 2013
Thankful Things
Things for which I am thankful today--
- I'm feeling the best I have in weeks. Not sure if its having a treatment plan, the sunny sky, not having any doctor visits, the acupuncture and chrysanthemum bud tea, or some combination of the above. Whatever it is, I'll take it.
- All the people praying for me and sending good thoughts my way. Thank you. It's what keeps me going.
- My family....especially my daughter Amy. Amy is an adult care nurse practitioner so she's edumacataed in these medical things. She went with me and Al to my appointment yesterday. She sat to my right, somewhat behind Dr. Efebera. As Dr. Efebera was reviewing my test results, Myeloma Scan (those 16 x-rays I had last week) and the radiologist report, it was so comforting to be able to look over at Amy with a quizzical/worried look and have her shake her head with a "don't worry about that" response or a head nod saying "that makes sense." I really valued having the family healthcare contingent during Claire's face plant in Australia (you can read about that here) but the knowledge and guidance Amy provided me yesterday brought so much comfort. I feel so blessed to have such an awesome kid....even though she's not a kid.
Thursday, March 07, 2013
Lookin' Good
Had a very encouraging appointment with Dr. Efebera. Bone marrow biopsy did show systemic Amyoloidosis...boo, in that I have it, yay, in that I don't have to undergo a kidney biopsy. She wants to move ahead with stem cell transplant and the coordinator is supposed to call me today or tomorrow to get things rolling.
I am going to have one round of chemo (4 treatments over 2 weeks) before the transplant to clear out some of the protein that has built up. She said this should alleviate some of the gastrointestinal and kidney problems I'm having. Seems weird that chemo might make me feel better but I'm pretty sure that's why we're doing it. I finish my last treatment the day before we leave for Steamboat. I hope this means I'll be able to eat better and maybe even have a beer while I'm out there.
I was watching Price Is Right while waiting and was thinking about stem cell transplant as my showcase prize. Looks like I got the showcase with some bonus chemo thrown in, too. I'll take that over the silly car the guy won today.
The theme of "God-incidences" continues with everything working out just so. As my friend Allyn said, "Its a terrible situation with the best possible circumstances" (or something like that. She always says insightful things and I get so caught up in how insightful they are I forget exactly what she said.)
Dr. Efebera said people my age tolerate the transplant very well and says they are usually out of the hospital after 3 weeks and some go back to work after 4 weeks. She said she's betting I'll be out in 2-1/2....but I think she's just trying to pump me up. Hey, I'll take it.
Bottom line...good news across the board. Prayers are working. Thanks to all of you who have taken time to pray, send good thoughts/vibes, etc. I really appreciate it.
I am going to have one round of chemo (4 treatments over 2 weeks) before the transplant to clear out some of the protein that has built up. She said this should alleviate some of the gastrointestinal and kidney problems I'm having. Seems weird that chemo might make me feel better but I'm pretty sure that's why we're doing it. I finish my last treatment the day before we leave for Steamboat. I hope this means I'll be able to eat better and maybe even have a beer while I'm out there.
I was watching Price Is Right while waiting and was thinking about stem cell transplant as my showcase prize. Looks like I got the showcase with some bonus chemo thrown in, too. I'll take that over the silly car the guy won today.
The theme of "God-incidences" continues with everything working out just so. As my friend Allyn said, "Its a terrible situation with the best possible circumstances" (or something like that. She always says insightful things and I get so caught up in how insightful they are I forget exactly what she said.)
Dr. Efebera said people my age tolerate the transplant very well and says they are usually out of the hospital after 3 weeks and some go back to work after 4 weeks. She said she's betting I'll be out in 2-1/2....but I think she's just trying to pump me up. Hey, I'll take it.
Bottom line...good news across the board. Prayers are working. Thanks to all of you who have taken time to pray, send good thoughts/vibes, etc. I really appreciate it.
Wednesday, March 06, 2013
Illness as metaphor
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
--Susan Sontag, Illness as Metaphor
Tuesday, March 05, 2013
Hair Salon Theology
Monday night I went to get my hair cut and colored. I've been going to the same person since I moved to Columbus in 2006 and followed her to three different salons. I'm not that particular about my hair but Tami always cuts it well. The main reason I stick with Tami is because she's a strong Christian and our talks while getting my hair cut always uplift me and strengthen my faith. Monday night was no exception.
She was so encouraging about how God will use my health problems for good. She told me God had given me many gifts and put me in a place where many people listen to me and respect me. My disease will give me an opportunity to share my faith with others and let them see the peace that comes from a relationship with Christ. Whether your theology says everything that happens is the will of God or it says that God will provide care and comfort during difficult times brought on by a world of free will, I pray that I can be a living example of God's love through this time.
Alan and I were talking the other night about so many things that have happened to put us in a place to be able to deal with this in the best way possible....the ONLY physician in Ohio listed on the Amyloidosis website as having interest and experience treating Amyloidosis is Dr. Efebera. So many patients have to travel to Boston, New York or Minnesota to get the most advanced treatment. I can get it 20 miles from my house. The twice yearly meeting of the Ohio Amyloidosis support group just happens to be scheduled this Saturday at the James Hospital at OSU. And, regardless of how frustrated I was with my primary care doc not taking my symptoms seriously, I was directed to those who did and they diagnosed this disease before I had any organ damage (at least that's what I know so far.)
I have my own personal health advisory and care committee...my husband Alan Medical ICU nurse, my daughter Amy adult care Nurse Practitioner, my brother in law David Internal Medicine Physician.
I found out one of my best buds from college is a hematologist/oncologist Nurse Practitioner working on her PhD who worked on the Stem Cell/Bone Marrow Transplant Unit at the University of Florida hospital for 6 years. A former colleague at Nationwide now works at Vanderbilt University Hospital with hematologist/oncologists on a program designed to use data and analytics to help guide physicians to the most appropriate diagnostic tests.
Two years ago, I was co-chair for my church's capital campaign. I got to work with one of the founding members of our church, John Rucker, on this effort and we developed a wonderful relationship. He went through high dose chemo and stem cell transplant 6 years ago. We had a great phone call tonight and it brings me a lot of comfort knowing that someone I know and respect has gone down this road and will be there to help me along the way.
So, do I get mad at God about this disease? How could I? When I have received something good from God, I never stopped to question "Why me?" It would be wrong (hypocritical, really, and I HATE hypocrisy) of me to do that now that something bad has happened. I don't believe my disease is from God....its from a combination of genetic and environmental factors that has caused my bone marrow to go haywire. I do believe that all these seeming coincidences I list above are really what my friend Cass calls "God-incidences"....visible examples that God is there to help lessen a burden that the world placed upon me. I pray I can continue to see God's comfort as I progress through this and can be a symbol of God's love to others.
=========================================
Current medical update:
She was so encouraging about how God will use my health problems for good. She told me God had given me many gifts and put me in a place where many people listen to me and respect me. My disease will give me an opportunity to share my faith with others and let them see the peace that comes from a relationship with Christ. Whether your theology says everything that happens is the will of God or it says that God will provide care and comfort during difficult times brought on by a world of free will, I pray that I can be a living example of God's love through this time.
Alan and I were talking the other night about so many things that have happened to put us in a place to be able to deal with this in the best way possible....the ONLY physician in Ohio listed on the Amyloidosis website as having interest and experience treating Amyloidosis is Dr. Efebera. So many patients have to travel to Boston, New York or Minnesota to get the most advanced treatment. I can get it 20 miles from my house. The twice yearly meeting of the Ohio Amyloidosis support group just happens to be scheduled this Saturday at the James Hospital at OSU. And, regardless of how frustrated I was with my primary care doc not taking my symptoms seriously, I was directed to those who did and they diagnosed this disease before I had any organ damage (at least that's what I know so far.)
I have my own personal health advisory and care committee...my husband Alan Medical ICU nurse, my daughter Amy adult care Nurse Practitioner, my brother in law David Internal Medicine Physician.
I found out one of my best buds from college is a hematologist/oncologist Nurse Practitioner working on her PhD who worked on the Stem Cell/Bone Marrow Transplant Unit at the University of Florida hospital for 6 years. A former colleague at Nationwide now works at Vanderbilt University Hospital with hematologist/oncologists on a program designed to use data and analytics to help guide physicians to the most appropriate diagnostic tests.
Two years ago, I was co-chair for my church's capital campaign. I got to work with one of the founding members of our church, John Rucker, on this effort and we developed a wonderful relationship. He went through high dose chemo and stem cell transplant 6 years ago. We had a great phone call tonight and it brings me a lot of comfort knowing that someone I know and respect has gone down this road and will be there to help me along the way.
So, do I get mad at God about this disease? How could I? When I have received something good from God, I never stopped to question "Why me?" It would be wrong (hypocritical, really, and I HATE hypocrisy) of me to do that now that something bad has happened. I don't believe my disease is from God....its from a combination of genetic and environmental factors that has caused my bone marrow to go haywire. I do believe that all these seeming coincidences I list above are really what my friend Cass calls "God-incidences"....visible examples that God is there to help lessen a burden that the world placed upon me. I pray I can continue to see God's comfort as I progress through this and can be a symbol of God's love to others.
=========================================
Current medical update:
- meeting with Dr. Efebera on Thursday to get treatment plan and find out if bone marrow biopsy showed Amyloidosis.
- appt Monday with the nephrologist to "get him on board" per Dr. Efebera's nurse and to do a kidney biopsy of the Amyloidosis didn't show in my bone marrow. Having been hit in the kidneys playing basketball, the thought of a long needle being inserted into my kidney is not appealing.
- Cardiac MRI scheduled on 3/19 to check heart function.
Sunday, March 03, 2013
World's Luckiest Guy
World's Luckiest Guy--that's how my husband always described himself to folks when telling them about me and our relationship. This diagnosis has been hard on him, too. I remember the day of my diagnosis, before Dr. Levin had said it was amyloidosis, Dr. Levin had called me to say they had identified monoclonal protein in one of my tests. When I called Al, who is an ICU Nurse and really knowledgeable about the goings on of the body, I heard him start crying on the phone. We both knew that wasn't good.
We've had periods when one of us would cry, then the other would start and we enter this ongoing loop of tears. Last night at dinner, he was getting on my case for how little I had eaten. That's been an ongoing refrain in our relationship. Him thinking I wasn't eating enough and me giving him the Irish diplomat--the ability to tell a man to go to hell so he looks forward to the trip. Well, last night, I started crying telling him that with all the fluid in my abdomen, I had no room for food and that I knew how important it is for me to gain weight before chemo starts but I just couldn't eat. I think my contrite attitude made the difference between now and normal even more stark. He started crying and I told him that I'm looking forward to the day we can get back to normal with him telling me to eat and me telling him to get off my case.
When we were meeting with Dr. Efebera and she was talking with a great deal of certainty that stem cell transplant was an option, I looked over at Alan and he looked like he was about to bust out sobbing. Which, of course, made me start tearing up. Good thing Claire wasn't there or she would have been irritated with both of us..."why are you crying if its a good thing?"
He's in for a tough road taking care of me because, as you might imagine, I can get a little cantankerous. Plus, he's got to manage Claire and the zoo. But all he's talking about is making sure he will be there with me all the time when I'll be at my weakest. As he goes through this with me, I hope he continues to think he's the luckiest guy in the world.
It gives me so much confidence knowing that he'll be there to take care of me and look out for me in the hospital. Not just because he's an ICU nurse and knows a lot of stuff, but because I know he's committed to making sure I survive. Alan will talk about having critically ill patients that are on the brink of death and how he makes sure they make it through the night..."they're not dying on my watch." It's who he is and I'm thankful he can direct that commitment toward me.
I've been listening to some old Bruce Springsteen and the song Thunder Road always brings me to tears. Throughout our relationship, one of the ways Alan and I would get away and connect with each other is by taking a fast car on a drive with the music blaring. The song captures that feeling and it conjures up the image of the road we're facing together. When I told him about that tonight and showed him the lyrics he repeated the last line to me...
Thunder Road
We've had periods when one of us would cry, then the other would start and we enter this ongoing loop of tears. Last night at dinner, he was getting on my case for how little I had eaten. That's been an ongoing refrain in our relationship. Him thinking I wasn't eating enough and me giving him the Irish diplomat--the ability to tell a man to go to hell so he looks forward to the trip. Well, last night, I started crying telling him that with all the fluid in my abdomen, I had no room for food and that I knew how important it is for me to gain weight before chemo starts but I just couldn't eat. I think my contrite attitude made the difference between now and normal even more stark. He started crying and I told him that I'm looking forward to the day we can get back to normal with him telling me to eat and me telling him to get off my case.
When we were meeting with Dr. Efebera and she was talking with a great deal of certainty that stem cell transplant was an option, I looked over at Alan and he looked like he was about to bust out sobbing. Which, of course, made me start tearing up. Good thing Claire wasn't there or she would have been irritated with both of us..."why are you crying if its a good thing?"
He's in for a tough road taking care of me because, as you might imagine, I can get a little cantankerous. Plus, he's got to manage Claire and the zoo. But all he's talking about is making sure he will be there with me all the time when I'll be at my weakest. As he goes through this with me, I hope he continues to think he's the luckiest guy in the world.
It gives me so much confidence knowing that he'll be there to take care of me and look out for me in the hospital. Not just because he's an ICU nurse and knows a lot of stuff, but because I know he's committed to making sure I survive. Alan will talk about having critically ill patients that are on the brink of death and how he makes sure they make it through the night..."they're not dying on my watch." It's who he is and I'm thankful he can direct that commitment toward me.
I've been listening to some old Bruce Springsteen and the song Thunder Road always brings me to tears. Throughout our relationship, one of the ways Alan and I would get away and connect with each other is by taking a fast car on a drive with the music blaring. The song captures that feeling and it conjures up the image of the road we're facing together. When I told him about that tonight and showed him the lyrics he repeated the last line to me...
"It's a town full of losers and I'm pulling out of here to win."He was crying and so was I...probably because we're both so lucky.
Thunder Road
The screen door slams
Mary' dress waves
Like a vision she dances across the porch
As the radio plays
Roy Orbison singing for the lonely
Hey that's me and I want you only
Don't turn me home again
I just can't face myself alone again
Don't run back inside
Darling you know just what I'm here for
So you're scared and you're thinking
That maybe we ain't that young anymore
Show a little faith there's magic in the night
You ain't a beauty but hey you're alright
Oh and that's alright with me
You can hide 'neath your covers
And study your pain
Make crosses from your lovers
Throw roses in the rain
Waste your summer praying in vain
For a saviour to rise from these streets
Well now I'm no hero
That's understood
All the redemption I can offer girl
Is beneath this dirty hood
With a chance to make it good somehow
Hey what else can we do now ?
Except roll down the window
And let the wind blow
Back your hair
Well the night's busting open
These two lanes will take us anywhere
We got one last chance to make it real
To trade in these wings on some wheels
Climb in back
Heaven's waiting on down the tracks
Oh-oh come take my hand
We're riding out tonight to case the promised land
Oh-oh Thunder Road oh Thunder Road
Lying out there like a killer in the sun
Hey I know it's late we can make it if we run
Oh Thunder Road sit tight take hold
Thunder Road
Well I got this guitar
And I learned how to make it talk
And my car's out back
If you're ready to take that long walk
From your front porch to my front seat
The door's open but the ride it ain't free
And I know you're lonely
For words that I ain't spoken
But tonight we'll be free
All the promises'll be broken
There were ghosts in the eyes
Of all the boys you sent away
They haunt this dusty beach road
In the skeleton frames of burned out Chevrolets
They scream your name at night in the street
Your graduation gown lies in rags at their feet
And in the lonely cool before dawn
You hear their engines roaring on
But when you get to the porch they're gone
On the wind so Mary climb in
It's town full of losers
And I'm pulling out of here to win
Olivia Chin is Mean
I bought a book on Amazon this morning called "Love, Olivia: A Stem Cell Transplant Story" written by Olivia Chin. It's her story of stem cell transplant due to multiple myeloma (bone marrow cancer) and secondary amyloidosis (from the cancer which is quite common.) About 3 pages in, she talks about how she was initially diagnosed with Primary Amyloidosis, "this was equivalent to getting a death sentence" and that her subsequent diagnosis of multiple myeloma with secondary amyloidosis was "equivalent to getting parole."
I don't know if its accurate to think there's a better prognosis with multiple myeloma, but if its a death sentence I have to beat, so be it. I remember reading the book Papillon when I was in middle school. While his sentence was life in prison, he was committed to escaping or to die trying. He endured a lot of torturous treatment to gain his freedom.
Thanks, Olivia Chin but I don't need "the man" to grant my parole. I'll just make my escape.
I don't know if its accurate to think there's a better prognosis with multiple myeloma, but if its a death sentence I have to beat, so be it. I remember reading the book Papillon when I was in middle school. While his sentence was life in prison, he was committed to escaping or to die trying. He endured a lot of torturous treatment to gain his freedom.
Thanks, Olivia Chin but I don't need "the man" to grant my parole. I'll just make my escape.
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