Feeling a little better from the other night. Eating is still a choice between calories and pain but I'm managing it better.
We're in Denver tonight on our way home. Hope I'm feeling well enough to catch the Gator hoops game with the gang.
Keep the prayers & positive thoughts coming.
Friday, March 29, 2013
Wednesday, March 27, 2013
Prayers Please
Feeling the worst I have yet. A lot of abdominal pain from the disease attacking my GI tract. Totally incapacitated from the pain. Prayers please.
Thursday, March 21, 2013
What's Happening!
Upcoming schedule
3/21, Thurs 4PM Chemo
3/22, Fri 7AM Fly to Denver, Shuttle to Steamboat
3/23-24, Saturday and Sunday--Ski!!
3/25, Monday--Dogsled
3/26-28 Tuesday-Thursday--Ski!!
3/29 Friday--Shuttle to Denver. Overnight in Denver.
3/30, Saturday--Return from Denver
4/1, Monday--Work
4/2, Tuesday--Harvest stem cells
4/3, Wednesday--Harvest stem cells
4/4, Thursday--Work and then Fleetwood Mac concert with Al, Amy, Sean, Allyn and Jasper
Week of 4/8--Hospital admission for stem cell transplant.
Tuesday, March 19, 2013
The Boy or the Bunny?
One of my favorite books is The Velveteen Rabbit. Yes, its a sweet children's book but I really appreciate the themes of true love and transformation and believe it has some powerful lessons for adults.
I especially enjoy an audio book featuring Meryl Streep reading the book accompanied by lovely piano music by George Winston. I've been listening to it a lot lately. You can get a preview of it here..
http://www.youtube.com/watch?v=M_m054tLKvs
As I listen to the story and think of my upcoming transplant and recovery, I find myself wondering whether I'm the Boy or the Bunny.
In the story, the Boy lives a rather idyllic life with lots of toys and happy times playing in the yard with his beloved stuffed Bunny. But then the boy becomes ill with scarlet fever and all the toys and books the boy had in his bed must be taken out and burned while the Boy goes off to recover by the seaside.
Is there a lesson there for me? Are there things I hold close to me that God wants to put into the rubbish pile so he can transform them from what I've made them to be into the version He thinks they should be? My career, self-image, priorities? I wonder what things I've held close that will end up in a rubbish sack "in the corner behind the fowl-house."
The Bunny in the story is intrigued by the concept of "becoming real", being truly loved by a child, once he is told about it by the Skin Horse. But "he longed to become Real, to know what it felt like; and yet the idea of growing shabby and losing his eyes and whiskers was rather sad. He wished that he could become it without these uncomfortable things happening to him."
This section really struck me...
Is there a transformation for me that will occur through this process? Is God looking to more fully change me from my version of who I am into His version of who I am?
So, those of you who will go through this with me and be with me on the other side, know that I may undergo some transformations similar to the Bunny in the book. And if I'm the Boy, there may be some familiar things that don't look quite the same to me when I'm done.
I especially enjoy an audio book featuring Meryl Streep reading the book accompanied by lovely piano music by George Winston. I've been listening to it a lot lately. You can get a preview of it here..
http://www.youtube.com/watch?v=M_m054tLKvs
As I listen to the story and think of my upcoming transplant and recovery, I find myself wondering whether I'm the Boy or the Bunny.
In the story, the Boy lives a rather idyllic life with lots of toys and happy times playing in the yard with his beloved stuffed Bunny. But then the boy becomes ill with scarlet fever and all the toys and books the boy had in his bed must be taken out and burned while the Boy goes off to recover by the seaside.
Is there a lesson there for me? Are there things I hold close to me that God wants to put into the rubbish pile so he can transform them from what I've made them to be into the version He thinks they should be? My career, self-image, priorities? I wonder what things I've held close that will end up in a rubbish sack "in the corner behind the fowl-house."
The Bunny in the story is intrigued by the concept of "becoming real", being truly loved by a child, once he is told about it by the Skin Horse. But "he longed to become Real, to know what it felt like; and yet the idea of growing shabby and losing his eyes and whiskers was rather sad. He wished that he could become it without these uncomfortable things happening to him."
This section really struck me...
"And while the Boy was asleep, dreaming of the seaside, the little Rabbit lay among the old picture-books in the corner behind the fowl-house, and he felt very lonely. The sack had been left untied, and so by wriggling a bit he was able to get his head through the opening and look out. He was shivering a little, for he had always been used to sleeping in a proper bed, and by this time his coat had worn so thin and threadbare from hugging that it was no longer any protection to him. Near by he could see the thicket of raspberry canes, growing tall and close like a tropical jungle, in whose shadow he had played with the Boy on bygone mornings. He thought of those long sunlit hours in the garden–how happy they were–and a great sadness came over him. He seemed to see them all pass before him, each more beautiful than the other, the fairy huts in the flower-bed, the quiet evenings in the wood when he lay in the bracken and the little ants ran over his paws; the wonderful day when he first knew that he was Real. He thought of the Skin Horse, so wise and gentle, and all that he had told him."The story ends with the appearance of the Nursery Fairy, who takes care of the playthings that children have loved. She uses her magic to turn the Bunny into a real rabbit. Not the one that's only real in the imagination of a human boy but is transformed into the creature that God has created.
Is there a transformation for me that will occur through this process? Is God looking to more fully change me from my version of who I am into His version of who I am?
So, those of you who will go through this with me and be with me on the other side, know that I may undergo some transformations similar to the Bunny in the book. And if I'm the Boy, there may be some familiar things that don't look quite the same to me when I'm done.
"Autumn passed and Winter, and in the Spring, when the days grew warm and sunny, the Boy went out to play in the wood behind the house. And while he was playing, two rabbits crept out from the bracken and peeped at him. One of them was brown all over, but the other had strange markings under his fur, as though long ago he had been spotted, and the spots still showed through. And about his little soft nose and his round black eyes there was something familiar, so that the Boy thought to himself:
"Why, he looks just like my old Bunny that was lost when I had scarlet fever!"
But he never knew that it really was his own Bunny, come back to look at the child who had first helped him to be Real."Am I the Boy or the Bunny or some of both? Only time will tell as I move through this illness, treatment and recovery. I sense that a lot of what was, will be changed. I pray I have the wisdom and courage to follow God's lead as this happens.
Sunday, March 17, 2013
Better Today
Felt better today. Made it to church and I'm sure the love and support I always feel there helped me. Did a little shopping....bought some big lady tops at Target and a new pillow at Bed, Bath and Beyond. Usually, I'm a stomach sleeper and my current pillow is designed for that. Wellll, those days are gone for a while so I bought a pillow that's a little firmer because my neck has been bothering me from my silly flat little pillow. I'll use that one again when my silly flat little stomach comes back.
I finished my photo book to take to the hospital. Its called "Work Hard For This..." and its got loads of pictures of family, friends and fun times so that when things get tough I can remind myself of what's waiting on the other side.
I was able to cook dinner for Claire tonight, one of her favorite meals "Poppa Jack" Chicken named for the father of my friend Barb who made this for us back in 2004, maybe, and traditional Cuban style black beans and rice. I even had some of the black beans and rice. I walked my my mile on the treadmill. No running per Big Poppa Koontz because it burns calories. I finished the night with my Turmeric Tea per Dr. Parikh who recommended that turmeric couldn't hurt. Tomorrow I arrive at the hospital at 8:15 and have back to back tests and meetings to prepare for the Stem Cell Transplant. The cherry on the top of that sundae is a dose of chemo at 4 followed by a Cardiac MRI at 6:30 AM on Tuesday. I was going to go slouchy and comfy tomorrow and wear loose shirt, yoga pants and tennis shoes. But I decided this evening that since the leg/ankle swelling is under control, I'll wear my skinny yellow jeans (perhaps with a modified waist band) and my boots. Gotta look like I'm there to kick some a$$. Please, keep the prayers coming. I get so much strength and comfort from them.
I finished my photo book to take to the hospital. Its called "Work Hard For This..." and its got loads of pictures of family, friends and fun times so that when things get tough I can remind myself of what's waiting on the other side.
Visit Shutterfly.com to create your own personalized photobook.
I was able to cook dinner for Claire tonight, one of her favorite meals "Poppa Jack" Chicken named for the father of my friend Barb who made this for us back in 2004, maybe, and traditional Cuban style black beans and rice. I even had some of the black beans and rice. I walked my my mile on the treadmill. No running per Big Poppa Koontz because it burns calories. I finished the night with my Turmeric Tea per Dr. Parikh who recommended that turmeric couldn't hurt. Tomorrow I arrive at the hospital at 8:15 and have back to back tests and meetings to prepare for the Stem Cell Transplant. The cherry on the top of that sundae is a dose of chemo at 4 followed by a Cardiac MRI at 6:30 AM on Tuesday. I was going to go slouchy and comfy tomorrow and wear loose shirt, yoga pants and tennis shoes. But I decided this evening that since the leg/ankle swelling is under control, I'll wear my skinny yellow jeans (perhaps with a modified waist band) and my boots. Gotta look like I'm there to kick some a$$. Please, keep the prayers coming. I get so much strength and comfort from them.
Saturday, March 16, 2013
Not so normal...or the new normal???
Well my hopes of a normal weekend have not materialized, tripped up by the abdominal bloating that has rendered me practically incapacitated. I am basically on self-imposed bed rest because it is so painful and exhausting to be upright. A morning trip to the Apple Store to fix an issue with my Apple ID, left me exhausted and miserable. Oh, and, by the way, they couldn't fix but the issue but I figured it out later. If you have an old Apple ID and add a new email address to it, it really messes things up.
So, here I am, lying in bed watching movies and basketball hoping this isn't the new normal. Dr. Efebera said it could be a side effect from the steroids given with the chemo. Maybe it will resolve in a day or 2. But, I'm looking ahead a week when I'm supposed to be taking ski lessons in Steamboat and I'm hoping this isn't the new normal so I'll have a chance to participate in our trip. This ski trip is my last chance at fun before the descent into the depths of the stem cell transplant and aftermath begins. I pray that it can be the old normal....just for a while.
So, here I am, lying in bed watching movies and basketball hoping this isn't the new normal. Dr. Efebera said it could be a side effect from the steroids given with the chemo. Maybe it will resolve in a day or 2. But, I'm looking ahead a week when I'm supposed to be taking ski lessons in Steamboat and I'm hoping this isn't the new normal so I'll have a chance to participate in our trip. This ski trip is my last chance at fun before the descent into the depths of the stem cell transplant and aftermath begins. I pray that it can be the old normal....just for a while.
Thursday, March 14, 2013
Camel Backs
In roller coaster parlance, camel backs are a series of hills on a steel or wooden roller coaster where each succeeding hill is a little bigger. Camel backs produce negative G's or "air time". I've been having a lot of "air time" the last few days.
Monday was great...good news from the kidney doctor, hope for some of the edema and made it through the chemo ok...or so I thought. Turns out the super-heavy duty steroids they give with the chemo really caused me to retain even more fluid. I was at work on Tuesday and felt my legs filling up like water balloons. Thank God for my fat lady pants. Was able to make it to the Meet the Team dinner for Claire's school lacrosse team but my legs were so swollen it hurt to straighten them or bend them fully.
Wednesday wasn't much better although its always better first thing in the morning. Standing vertically just sends fluid into my legs. I got to my appointment with my favorite doctor, Doug Levin...the one who punched my ticket for this rollercoaster. He is what I describe as "funny-grumpy" but he's got the driest, most ascerbic sense of humor I've some across in a physician. He asked me how things were going and I told him its been quite a whirlwind. He said looking at my chart that I have a lot of really smart physicians working on my case. Good to know.
He talked about what a good prognosis I have due to my "excellent performance status" (why thanks, Doc, you know how to make a girl blush.) I told him that I feel so much of my prognosis is due to his diligence in finding what was wrong. I asked him how many cases of amyloidosis he diagnosed a year and he said he couldn't say. He said the original assessment of "fatty liver" just didn't fit with the symptoms. Too often when diagnosing, a physician will get "anchored" to a diagnosis and not consider other diagnoses that are more in line with the patient's symptoms. His time practicing internal medicine many years ago taught him to look beyond his specialty and take a comprehensive look at all the systems. Thank God he did.
He's also gotten some action on trying to get the edema under control. He told me, "Just keep your eye on your online chart. You should see some new prescriptions showing up there." Sure enough, I got a call from the kidney doctor today increasing the dosage of one medicine and adding another to try to help.
This morning was pretty rough as I had my first bout of nausea and abdominal pain. The pain was the worst pain I've felt in a looooong time...like since I was pushing out a baby without an epidural type pain. It only lasted about 1-1/2 hours but it really knocked me for a loop. I told Amy I'm just considering it as a preview of coming attractions. :/
I did feel better, made it through my chemo today just fine and Alan, Claire and I went out to dinner like a normal family again. It was a nice respite. As we were driving to chemo today, I told Al I still wonder at times. "Is this really happening? Is this really my life? From normal work, family, workout, social stuff to ongoing doctors and drugs and IVs." Seems so surreal at times. I went from someone who avoided taking medication at all cost to someone who now takes four medicines every day and have two others to take to deal with symptoms or side effects.
Really, the worst part of the last few days was not directly due to my disease. On Wednesday, I sent my Redfront Macaw, Pippi to another home. It wasn't totally due to my illness but looking at having very limited time and energy over the next year, I knew it wasn't fair to her to leave her alone, parked in her cage when she needs her human family and interaction. So, my vet found a wonderful woman who already has one Redfront to adopt her. She's going to an awesome home but I'll miss my bud. I've had her since 2006 when she came here as the bird version of a little puppy.
There are still plenty of mercies large and small in the midst of it. Yesterday, I got a call from Deb, the sister of my sister-in-law, Karen. Connect those dots. Karen, Deb and Cindy are the three sisters with whom I spend a weekend in November every year making 13 or so different kinds of Christmas cookies. We've also done Thanksgiving with Deb and her husband Paul and other family celebrations. Although we don't see each other frequently, we feel really close and consider one another sisters. Deb was so full of encouragement and uplifting words. She reminded me of how strong I am and that I just need to focus on what I need to do to get well and that I will have a lot of life to enjoy on the other side of this. The conversation just filled me with such joy and hope. I didn't have sisters growing up but I am so blessed to have three wonderful women as my sisters now.
The team at OSU is so responsive to make sure I have what I need to get well and feel better. They handle all discussions with the insurance company and nothing has been slowed down because of that. Even today, they ordered me some anti-nausea medication while I was at chemo. While I was still there, the pharmacy called and said the insurance company required pre-approval to fill the prescription. I was ready to call the drug plan when I mentioned it to the nurse. She called the nurse practitioner who contacted the drug plan and pharmacy so it was waiting for us when we got to the pharmacy. The James is definitely a well-oiled machine.
I may only have one cycle of chemotherapy before the stem cell transplant. Hollie, an incredible nurse practitioner who works with Dr. Efebera said that the insurance company may not approve the second cycle that would occur when I get back. I'll leave it up to Dr. Efebera to get it worked out. Right now, I'm scheduled to have my stem cells collected on April 2. That's the birthday of one of my best friends, Allyn. So, we'll have something to share on April 2...the beginning of her life and the beginning of the process to start mine over.
So, I get Friday off from doctor visits and can try to have a normal weekend before I go through stem cell testing and orientation on Monday....
Keep the prayers and positive vibes coming! I'll be here listening to the Sound of Music soundtrack, my go to happy music. I need a happy goatherd.
Monday was great...good news from the kidney doctor, hope for some of the edema and made it through the chemo ok...or so I thought. Turns out the super-heavy duty steroids they give with the chemo really caused me to retain even more fluid. I was at work on Tuesday and felt my legs filling up like water balloons. Thank God for my fat lady pants. Was able to make it to the Meet the Team dinner for Claire's school lacrosse team but my legs were so swollen it hurt to straighten them or bend them fully.
Wednesday wasn't much better although its always better first thing in the morning. Standing vertically just sends fluid into my legs. I got to my appointment with my favorite doctor, Doug Levin...the one who punched my ticket for this rollercoaster. He is what I describe as "funny-grumpy" but he's got the driest, most ascerbic sense of humor I've some across in a physician. He asked me how things were going and I told him its been quite a whirlwind. He said looking at my chart that I have a lot of really smart physicians working on my case. Good to know.
He talked about what a good prognosis I have due to my "excellent performance status" (why thanks, Doc, you know how to make a girl blush.) I told him that I feel so much of my prognosis is due to his diligence in finding what was wrong. I asked him how many cases of amyloidosis he diagnosed a year and he said he couldn't say. He said the original assessment of "fatty liver" just didn't fit with the symptoms. Too often when diagnosing, a physician will get "anchored" to a diagnosis and not consider other diagnoses that are more in line with the patient's symptoms. His time practicing internal medicine many years ago taught him to look beyond his specialty and take a comprehensive look at all the systems. Thank God he did.
He's also gotten some action on trying to get the edema under control. He told me, "Just keep your eye on your online chart. You should see some new prescriptions showing up there." Sure enough, I got a call from the kidney doctor today increasing the dosage of one medicine and adding another to try to help.
This morning was pretty rough as I had my first bout of nausea and abdominal pain. The pain was the worst pain I've felt in a looooong time...like since I was pushing out a baby without an epidural type pain. It only lasted about 1-1/2 hours but it really knocked me for a loop. I told Amy I'm just considering it as a preview of coming attractions. :/
I did feel better, made it through my chemo today just fine and Alan, Claire and I went out to dinner like a normal family again. It was a nice respite. As we were driving to chemo today, I told Al I still wonder at times. "Is this really happening? Is this really my life? From normal work, family, workout, social stuff to ongoing doctors and drugs and IVs." Seems so surreal at times. I went from someone who avoided taking medication at all cost to someone who now takes four medicines every day and have two others to take to deal with symptoms or side effects.
Really, the worst part of the last few days was not directly due to my disease. On Wednesday, I sent my Redfront Macaw, Pippi to another home. It wasn't totally due to my illness but looking at having very limited time and energy over the next year, I knew it wasn't fair to her to leave her alone, parked in her cage when she needs her human family and interaction. So, my vet found a wonderful woman who already has one Redfront to adopt her. She's going to an awesome home but I'll miss my bud. I've had her since 2006 when she came here as the bird version of a little puppy.
There are still plenty of mercies large and small in the midst of it. Yesterday, I got a call from Deb, the sister of my sister-in-law, Karen. Connect those dots. Karen, Deb and Cindy are the three sisters with whom I spend a weekend in November every year making 13 or so different kinds of Christmas cookies. We've also done Thanksgiving with Deb and her husband Paul and other family celebrations. Although we don't see each other frequently, we feel really close and consider one another sisters. Deb was so full of encouragement and uplifting words. She reminded me of how strong I am and that I just need to focus on what I need to do to get well and that I will have a lot of life to enjoy on the other side of this. The conversation just filled me with such joy and hope. I didn't have sisters growing up but I am so blessed to have three wonderful women as my sisters now.
The team at OSU is so responsive to make sure I have what I need to get well and feel better. They handle all discussions with the insurance company and nothing has been slowed down because of that. Even today, they ordered me some anti-nausea medication while I was at chemo. While I was still there, the pharmacy called and said the insurance company required pre-approval to fill the prescription. I was ready to call the drug plan when I mentioned it to the nurse. She called the nurse practitioner who contacted the drug plan and pharmacy so it was waiting for us when we got to the pharmacy. The James is definitely a well-oiled machine.
I may only have one cycle of chemotherapy before the stem cell transplant. Hollie, an incredible nurse practitioner who works with Dr. Efebera said that the insurance company may not approve the second cycle that would occur when I get back. I'll leave it up to Dr. Efebera to get it worked out. Right now, I'm scheduled to have my stem cells collected on April 2. That's the birthday of one of my best friends, Allyn. So, we'll have something to share on April 2...the beginning of her life and the beginning of the process to start mine over.
So, I get Friday off from doctor visits and can try to have a normal weekend before I go through stem cell testing and orientation on Monday....
Keep the prayers and positive vibes coming! I'll be here listening to the Sound of Music soundtrack, my go to happy music. I need a happy goatherd.
Wednesday, March 13, 2013
Not phenomenal, just faithful
Over on my Facebook wall, as I've shared blog posts, friends have been very gracious with their praise of my attitude using superlatives such as phenomenal, inspirational. I just see it as being faithful. Here's what I posted on Facebook...
It's nothing phenomenal, just discipline and faith. You guys know I HATE hyposcrisy.
How could I...
- read the Bible all these years and believe those promises;
- have this collect taped to my computer "Grant us, Lord, not to be anxious about earthly things, but to love things heavenly; and even now, while we are placed among things that are passing away, to hold fast to those that shall endure; through Jesus Christ our Lord, who lives and reigns with you and the Holy Spirit, one God, for ever and ever. Amen.";
- stand in church each week and affirm my faith through the Nicene Creed or
- say this prayer, "Send us now into the world in peace, and grant us strength and courage to love and serve you with gladness and singleness of heart; through Christ our Lord. Amen."...
And not trust God to work this out. Its put up or shut up time. I just don't let my mind go to the dark places. "What-if's" are the gateway drug to despair.
Every time I have my centering prayer, God tells me he's got this. How can I question when I see so much of his hand at work around me?
Monday, March 11, 2013
I heart kidney doctors
Well the big thing today was the chemo at 4 but my favorite part was my appointment with my nephrologist, Dr. Parikh. When dealing with a serious disease, you want your doctors to be highly skilled medical practitioners. When I worked at a teaching hospital in Jacksonville that had 13 medical residency programs, I got to know a lot of medical residents. I found that the sub-specialties tended to attract folks who were more comfortable with the science than the patient.
After meeting Dr. Bhatt on Saturday and being so impressed with his knowledge, care and compassion, I wondered if there could be 2 equally competent and compassionate sub-specialty physicians within the same group. Now, given a choice, I want the scientist but personality, care and compassion just add a dose of comfort to a stressful situation. I got the whole deal with Dr. Parikh.
He was very knowledgable about managing kidney function for amyloidosis patients AND very friendly and personable, too. I had a great appointment with him. He said there's nothing that indicates I'm at risk for permanent kidney damage. He was very thorough and comprehensive in his review of my case. He was clear about explaining what was going on and what we needed to do about it. We joked about my ski trip and staying safe and we talked about the benefits of a plant-based diet and eating more turmeric and garlic. Plus, he didn't stick me. I didn't have a blood draw at this appointment which was the first in a long time. He told me that Dr. Efebera did all the dirty work.
When he introduced himself to me, he said that he felt that he knew me because Dr. Efebera had told him so much about me. He also said that Dr. Efebera was moving ahead with a great deal of urgency. That made me really happy.
That urgency is evident by the fact that I have gone from diagnosis to referral to first chemo in 14 days....14 days. It seems so incredible!
The chemo was really easy. Went to the central point of my treatment, 2nd Floor James Cancer Center. Checked in, they called me back, took my vitals and put me in treatment room 13. Initially, I was superstitious about room 13 but then I realized, "Yes, 13 is unlucky....unlucky for those sorry amyloid proteins in my body!" Got settled in, IV started, blood drawn, key values checked, meeting with pharmacist, anti-nausea pill taken, dexamethasone (super-duper steroid) given and then the real magic potion was delivered...
The nurse pushed it into my IV line. We took out the IV, cleaned me up and home I went. In and out in 2.5 hours. The crazy thing about this chemo drug is that I have to take precautions when I pee. Its so toxic that it could aerosolize when I flush the toilet and cause damage to any skin or mucous membranes with which it comes into contact. So I have to close the lid and flush the toilet twice to make sure the toxic pee is gone. Still wondering how I'll manage this at work with no lids and auto-flushers. Alan and I joked about leaving a piece of poster board in the bathroom labeled with "Kathy's Toxic Toilet Shield" with the toxic symbol on it. Maybe??
Right now, I'm feeling pretty good. One of my strengths when I've done the Strengthsfinder survey (can't remember which one) said that once I see a course of action, I am restless and anxious until I see progress. Today was a great deal of progress. I feel great spiritually, emotionally, mentally and physically.
When Alan asked me how I was doing tonight, I said, "Really good." He said, "Most people feel really anxious and irritated after taking dexamethasone. It will be just like you if it makes you more productive." I replied, "Makin' lemonade, I'm just makin' lemonade from the lemons coming my way."
After meeting Dr. Bhatt on Saturday and being so impressed with his knowledge, care and compassion, I wondered if there could be 2 equally competent and compassionate sub-specialty physicians within the same group. Now, given a choice, I want the scientist but personality, care and compassion just add a dose of comfort to a stressful situation. I got the whole deal with Dr. Parikh.
He was very knowledgable about managing kidney function for amyloidosis patients AND very friendly and personable, too. I had a great appointment with him. He said there's nothing that indicates I'm at risk for permanent kidney damage. He was very thorough and comprehensive in his review of my case. He was clear about explaining what was going on and what we needed to do about it. We joked about my ski trip and staying safe and we talked about the benefits of a plant-based diet and eating more turmeric and garlic. Plus, he didn't stick me. I didn't have a blood draw at this appointment which was the first in a long time. He told me that Dr. Efebera did all the dirty work.
When he introduced himself to me, he said that he felt that he knew me because Dr. Efebera had told him so much about me. He also said that Dr. Efebera was moving ahead with a great deal of urgency. That made me really happy.
That urgency is evident by the fact that I have gone from diagnosis to referral to first chemo in 14 days....14 days. It seems so incredible!
The chemo was really easy. Went to the central point of my treatment, 2nd Floor James Cancer Center. Checked in, they called me back, took my vitals and put me in treatment room 13. Initially, I was superstitious about room 13 but then I realized, "Yes, 13 is unlucky....unlucky for those sorry amyloid proteins in my body!" Got settled in, IV started, blood drawn, key values checked, meeting with pharmacist, anti-nausea pill taken, dexamethasone (super-duper steroid) given and then the real magic potion was delivered...
The nurse pushed it into my IV line. We took out the IV, cleaned me up and home I went. In and out in 2.5 hours. The crazy thing about this chemo drug is that I have to take precautions when I pee. Its so toxic that it could aerosolize when I flush the toilet and cause damage to any skin or mucous membranes with which it comes into contact. So I have to close the lid and flush the toilet twice to make sure the toxic pee is gone. Still wondering how I'll manage this at work with no lids and auto-flushers. Alan and I joked about leaving a piece of poster board in the bathroom labeled with "Kathy's Toxic Toilet Shield" with the toxic symbol on it. Maybe??
Right now, I'm feeling pretty good. One of my strengths when I've done the Strengthsfinder survey (can't remember which one) said that once I see a course of action, I am restless and anxious until I see progress. Today was a great deal of progress. I feel great spiritually, emotionally, mentally and physically.
When Alan asked me how I was doing tonight, I said, "Really good." He said, "Most people feel really anxious and irritated after taking dexamethasone. It will be just like you if it makes you more productive." I replied, "Makin' lemonade, I'm just makin' lemonade from the lemons coming my way."
Sunday, March 10, 2013
Rough day...let's go Chemo!!
Today was a rough day. My abdominal bloating was the worst its been in a while. It feels...and looks...like I have a 10 pound sack of potatoes shoved in my abdominal cavity. Originally I thought it was just fluid from my under-functioning kidneys. Turns out those damn amyloid proteins are all through my stomach and intestines and causing edema there (just like you might get in your ankles) and within some of the abdominal lining...I think. I'm not exactly sure where it is but its all blowed up, to quote Alan.
It makes me so tired and uncomfortable. I call it my amyloid baby whom I will name Amy Lloyd which will be awkward since I already have a child named Amy but hey, if George Forman can do it, why can't I?
Anyway, I have my first chemo appointment tomorrow at 4. Dr. Efebera said it will make me feel better....go figure. From what I understand, this chemo will help clear out some of the amyloid protein that has built up in my tissues. I have been trying to understand the biochemistry behind it. I get some of it but most of how it works is way over my head. So, in order to have a good mental image while the chemo is going on to spur the Velcade aka bortezomib, to do its job, I have come up with this mental image...
Yes, that's the arcade game Galaga that took much of my time, money and possibly some career choices while I was in college. I spent many hours with my friends Deb and Elaine enjoying an adult beverage while defending the galaxy. So, I will see my little space ship Velcade going through my body zapping any amyloid protein that comes within its gun sights. Of course, when I played Galaga, I usually had a beer or black russian sitting nearby. Dr. Efebera said no alcohol until after the transplant so I'll just have to remember the taste and hope I can spur my gun ships on while totally sober.
I also have an appointment tomorrow morning with the Nephrologist to "get him on board" to quote Dr. Efebera's nurse practitioner. I'm assuming its so he can have an understanding of my kidney function going into the high dose chemo that can cause kidney damage and to monitor my kidney function during recovery. I told Dr. Bhatt on Saturday that I had the appointment with one of his colleagues, Dr. Samir Parikh, on Monday. He said he would be at the clinic and would tell my nephrologist that he's watching out for me. How cool is that!
So, up to this point, the roller coaster has been clicking up the tracks. Tomorrow, I go over the first hill. From what I understand, this one will be minor compared to the stem cell transplant hill. But it's a start.
Hands are in the air!! Let's go chemo!!
It makes me so tired and uncomfortable. I call it my amyloid baby whom I will name Amy Lloyd which will be awkward since I already have a child named Amy but hey, if George Forman can do it, why can't I?
Anyway, I have my first chemo appointment tomorrow at 4. Dr. Efebera said it will make me feel better....go figure. From what I understand, this chemo will help clear out some of the amyloid protein that has built up in my tissues. I have been trying to understand the biochemistry behind it. I get some of it but most of how it works is way over my head. So, in order to have a good mental image while the chemo is going on to spur the Velcade aka bortezomib, to do its job, I have come up with this mental image...
Yes, that's the arcade game Galaga that took much of my time, money and possibly some career choices while I was in college. I spent many hours with my friends Deb and Elaine enjoying an adult beverage while defending the galaxy. So, I will see my little space ship Velcade going through my body zapping any amyloid protein that comes within its gun sights. Of course, when I played Galaga, I usually had a beer or black russian sitting nearby. Dr. Efebera said no alcohol until after the transplant so I'll just have to remember the taste and hope I can spur my gun ships on while totally sober.
I also have an appointment tomorrow morning with the Nephrologist to "get him on board" to quote Dr. Efebera's nurse practitioner. I'm assuming its so he can have an understanding of my kidney function going into the high dose chemo that can cause kidney damage and to monitor my kidney function during recovery. I told Dr. Bhatt on Saturday that I had the appointment with one of his colleagues, Dr. Samir Parikh, on Monday. He said he would be at the clinic and would tell my nephrologist that he's watching out for me. How cool is that!
So, up to this point, the roller coaster has been clicking up the tracks. Tomorrow, I go over the first hill. From what I understand, this one will be minor compared to the stem cell transplant hill. But it's a start.
Hands are in the air!! Let's go chemo!!
Saturday, March 09, 2013
Getting to the Amyloid Oasis
Al and I spent the day at Ohio State attending the twice-yearly meeting of the Amyloidosis Support Group....which was conveniently scheduled 12 days after my diagnosis. It was great to meet other folks who are dealing with the disease and those who are in complete remission. I met a woman named Sandy who I said is my inspiration. She was diagnosed at 54 and is now in complete remission. She shared her contact info with me and told me to call or email if I ever had any questions or wanted to talk about anything. Another gift from God.
Spending the day with us were three OSU physicians actively involved in the care and treatment of amyloidosis patients. Dr. Efebera (my hematologist/oncologist), Dr Udayan Bhatt (nephrologist) and Dr. Rami Kahwash (cardiologist). These highly skilled and busy academic practitioners took more than 4 hours from their weekends to listen to each patient and answer questions with skill and compassion....regardless of how outlandish the question was. It was so inspiring to see these physicians who give equal focus to the scientific side and the human side of medical practice.
I mention the Amyloid Oasis again (my iPhone's initial autocorrect for amyloidosis) because after hearing the stories today of folks going years without a diagnosis, I had the vision of wandering in this medical desert. Once you have an accurate diagnosis and an experienced team treating you, you're in the Oasis. Until then, you are out in the desert. I know I'm now in the oasis.
Many people had their treatment at the Mayo Clinic and the support group recommends going to one of the major centers for treatment, or at least to develop the treatment plan. As frustrated and skeptical as I've been of my medical care at points on the journey, I have no skepticism with Dr. Efebera or Ohio State. Her training, her involvement in Phase 1 clinical trials, her obvious commitment to her patients gives me total confidence. And those who know me well probably find that surprising given my mantra of "In God we trust, all others bring data." Well, I have all the data I need.
After going through the process to get diagnosed, I told Alan I don't ever want to live in a city that doesn't have a major medical school and teaching hospital. I've done a lot of reading about rare diseases since my diagnosis and, as much as we think modern medicine is checklists and flow charts, its still more art than science. In my field of Customer Analytics, we talk about separating the signal in the data from the noise. That skill is especially important in medicine and it requires experience and intuition (the art part of medicine). It seems to me that its like trying to listen to about 5 different radio stations at once and slowly but surely get tuned into the one that is most relevant. That takes lot of experience and is so subject to how varied the physician's practice has been, how long they've been practicing and, the biases and assumptions that creep into any analysis.
Having an academic medical institution gives access to specialists most experienced at seeing complicated cases and they have honed the ability to diligently work through all the possible tests and results to more rapidly find the signal amidst the noise. It was a wonderful example of strong, structured, problem formulation to watch Dr. Levin order the first round of tests and then iterate through results and subsequent tests to arrive at a diagnosis. Thank God he did.
In medical education, I've learned, they train physicians that "common things are common" which means your patient with the odd collection of symptoms is most likely an atypical presentation of a common disease than a classic presentation of a rare disease. Another saying related to this that guides physicians' diagnostic process is "when you hear hoof beats think horses, not zebras." When my primary care doc couldn't find the horse, I think she thought I was imagining the hoof beats. I'm so thankful that Dr. Levin ventured out, found me on my zebra, and a brought me into the Amyloid Oasis. And, I'm thankful I've got Dr. Efebera to guide me through it.
Just another in the long list of things for which I'm thankful.
Spending the day with us were three OSU physicians actively involved in the care and treatment of amyloidosis patients. Dr. Efebera (my hematologist/oncologist), Dr Udayan Bhatt (nephrologist) and Dr. Rami Kahwash (cardiologist). These highly skilled and busy academic practitioners took more than 4 hours from their weekends to listen to each patient and answer questions with skill and compassion....regardless of how outlandish the question was. It was so inspiring to see these physicians who give equal focus to the scientific side and the human side of medical practice.
I mention the Amyloid Oasis again (my iPhone's initial autocorrect for amyloidosis) because after hearing the stories today of folks going years without a diagnosis, I had the vision of wandering in this medical desert. Once you have an accurate diagnosis and an experienced team treating you, you're in the Oasis. Until then, you are out in the desert. I know I'm now in the oasis.
Many people had their treatment at the Mayo Clinic and the support group recommends going to one of the major centers for treatment, or at least to develop the treatment plan. As frustrated and skeptical as I've been of my medical care at points on the journey, I have no skepticism with Dr. Efebera or Ohio State. Her training, her involvement in Phase 1 clinical trials, her obvious commitment to her patients gives me total confidence. And those who know me well probably find that surprising given my mantra of "In God we trust, all others bring data." Well, I have all the data I need.
After going through the process to get diagnosed, I told Alan I don't ever want to live in a city that doesn't have a major medical school and teaching hospital. I've done a lot of reading about rare diseases since my diagnosis and, as much as we think modern medicine is checklists and flow charts, its still more art than science. In my field of Customer Analytics, we talk about separating the signal in the data from the noise. That skill is especially important in medicine and it requires experience and intuition (the art part of medicine). It seems to me that its like trying to listen to about 5 different radio stations at once and slowly but surely get tuned into the one that is most relevant. That takes lot of experience and is so subject to how varied the physician's practice has been, how long they've been practicing and, the biases and assumptions that creep into any analysis.
Having an academic medical institution gives access to specialists most experienced at seeing complicated cases and they have honed the ability to diligently work through all the possible tests and results to more rapidly find the signal amidst the noise. It was a wonderful example of strong, structured, problem formulation to watch Dr. Levin order the first round of tests and then iterate through results and subsequent tests to arrive at a diagnosis. Thank God he did.
In medical education, I've learned, they train physicians that "common things are common" which means your patient with the odd collection of symptoms is most likely an atypical presentation of a common disease than a classic presentation of a rare disease. Another saying related to this that guides physicians' diagnostic process is "when you hear hoof beats think horses, not zebras." When my primary care doc couldn't find the horse, I think she thought I was imagining the hoof beats. I'm so thankful that Dr. Levin ventured out, found me on my zebra, and a brought me into the Amyloid Oasis. And, I'm thankful I've got Dr. Efebera to guide me through it.
Just another in the long list of things for which I'm thankful.
Friday, March 08, 2013
My Stem Cells
This video that parodies "My Hero" does a good job of explaining a stem cell transplant in a fun way.
"My Stem Cells"
"My Stem Cells"
Smokin' Hot--Medically Proven
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!
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!
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.
Saturday, March 02, 2013
Two truths
In my heart, I've always believed two truths. Time and time again, circumstances always confirm to me that--
So many people have come forward during this time to express their love, concern and support that its really been overwhelming. It brings me to tears sometimes just thinking about it (which, of course, irritates Claire, "Why are you crying if its a good thing"?) You expect your family, close friends, church family and close work associates to reach out. But I have had so many people offer to help, tell me they'll pray, cheer me up and cheer me on, tell me they know I'll beat it. I feel like Sally Field at the Academy Awards, "You like me! Right now, you like me!"
I was talking with one of my friends at work about this phenomenon and how the news is filled with stories that give the impression that people are bad. I think that comes from the fact that we live such self-reliant lives that people don't have an opportunity to show their goodness. So all we see are stories of bad. A silver lining of my health issues is that it gives people a chance to show they care....and that's good for them and its good for me.
Thanks to all of you who have been so caring and supportive. You have no idea how much it helps.
- God is good
- People are good
So many people have come forward during this time to express their love, concern and support that its really been overwhelming. It brings me to tears sometimes just thinking about it (which, of course, irritates Claire, "Why are you crying if its a good thing"?) You expect your family, close friends, church family and close work associates to reach out. But I have had so many people offer to help, tell me they'll pray, cheer me up and cheer me on, tell me they know I'll beat it. I feel like Sally Field at the Academy Awards, "You like me! Right now, you like me!"
I was talking with one of my friends at work about this phenomenon and how the news is filled with stories that give the impression that people are bad. I think that comes from the fact that we live such self-reliant lives that people don't have an opportunity to show their goodness. So all we see are stories of bad. A silver lining of my health issues is that it gives people a chance to show they care....and that's good for them and its good for me.
Thanks to all of you who have been so caring and supportive. You have no idea how much it helps.
Friday, March 01, 2013
Great is Thy Faithfulness
Musical theme of the day....
Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!
“Great is Thy faithfulness!” “Great is Thy faithfulness!“
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
“Great is Thy faithfulness,” Lord, unto me!
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