Day 61
Being at MDA is sometimes like I imagine being in jail would be. You are surrounded by three types of people generally speaking, Staff, New Patients and Old Patients. Replace the word "patient" with "inmate" and you have an institution. Most of the older patients (older as in more experienced) are exactly what you would expect from people who have been locked up in a institution for years. Like jailhouse lawyers they are always full of what they imagine to be helpful advice.
For example while we were in to do blood draws this morning we ran into a older patient who had come into MDA originally to be treated for lymphoma a year or more ago. The lymphoma went into remission but she developed leukemia as a side effect of the chemotherapy. She zeroed in on Ann and proceeded to strike up a conversation with her.
Well not so much a conversation as a list of things that she needed to do. Everything from putting our story on the Internet, to questions to ask our Doctor, to what type of letter to write me if she dies. Cheerful is not the word I would use. Needless to say I terminated the conversation as quickly as possible with this "helpful" soul.
But she is not the only one. MDA is literally choked full of these well intentioned meddlers that lie in wait for the unsuspecting to accidentally make eye contact or worse utter a friendly greeting. Once they are engaged they can do enormous amounts of damage before you can get away from them.
For example:
Busybody "What type of leukemia do you have, Deary?"
Ann "ALL t(4;11) positive."
Busybody "I haven't heard of that one. I have <insert horrible disease here>."
Ann "me too and they have to use <insert medical treatment here> while I'm in treatment."
Busybody "Oh no dear! You can't let them do that to you! My friend had that done and she never got any better. What you need to do is <insert stock advice about medicine, prayer, money ect>!"
See what happened? Older Patients (and some Staff ) pass off rumor and anecdotal evidence as actual tested scientific or medical knowledge. MDA's clinic structure actually encourages the spread of this type of disinformation, by packing large numbers of idle patients together with little to keep them occupied. I'm not criticizing MDA in this, it's hard to imagine how they could alter things in order to prevent it. in fact they do just about everything in their power to avoid it.
But a word of cation to anyone who is ever diagnosed with cancer, or has a loved one who they escort to a cancer center - don't ever listen to anyone but your Doctor.
More updates later today
Tuesday, March 13, 2007
Monday, March 12, 2007
The Eve of Round 4
Day 60
We are getting ready for Ann to go back into the hospital tomorrow for the 4th round of Hyper CVAD. I hope that this one is her last and that everything is worked out so she can be moved to pretransplant. This round she will be getting Cytarabine again so I am anticipating that her eyes will be torn up once again for a week or more. They are going to be starting her steroid eye drops earlier this time, but Ann's reaction was so extreme last time that I don't think it will make much difference.
Ann managed to help me fold laundry today much the effort left her drained and she needed to take a nap afterwards. I know Ann is anemic right now because of the cumulative effect of the chemo, but it still bothers me to see the evidence of it with my own eyes. Tomorrow we are scheduled to get more blood work and labs, and I am pretty anxious to see what the numbers say.
It may seem strange but there is a certain amount of comfort in knowing what the blood test numbers are. They offer me a measure of security that I took for granted before she got sick. Are Ann's platelets low? If so I know to be extra careful with her because she will bruise easy and I need to be ready to catch her if she falls - she might get cut and bleed badly. What is her ANC today? If it's low I know that I should only allow her to eat foods that have been canned or can be prepared very simply. Not knowing those numbers drives me nuts...secretly because they are my sentinels that will sound the first warning if the cancer begins to muster it's strength again.
Hard to belive that we have been doing this for two months now.
We are getting ready for Ann to go back into the hospital tomorrow for the 4th round of Hyper CVAD. I hope that this one is her last and that everything is worked out so she can be moved to pretransplant. This round she will be getting Cytarabine again so I am anticipating that her eyes will be torn up once again for a week or more. They are going to be starting her steroid eye drops earlier this time, but Ann's reaction was so extreme last time that I don't think it will make much difference.
Ann managed to help me fold laundry today much the effort left her drained and she needed to take a nap afterwards. I know Ann is anemic right now because of the cumulative effect of the chemo, but it still bothers me to see the evidence of it with my own eyes. Tomorrow we are scheduled to get more blood work and labs, and I am pretty anxious to see what the numbers say.
It may seem strange but there is a certain amount of comfort in knowing what the blood test numbers are. They offer me a measure of security that I took for granted before she got sick. Are Ann's platelets low? If so I know to be extra careful with her because she will bruise easy and I need to be ready to catch her if she falls - she might get cut and bleed badly. What is her ANC today? If it's low I know that I should only allow her to eat foods that have been canned or can be prepared very simply. Not knowing those numbers drives me nuts...secretly because they are my sentinels that will sound the first warning if the cancer begins to muster it's strength again.
Hard to belive that we have been doing this for two months now.
Sunday, March 11, 2007
Day 59
Chris asked me today if any aspect of this experience is making me uncomfortable. I honestly know what he was asking, but all I could think was I can't believe that I may die because I can't receive treatment. That was the one thought that came to mind and maybe it's strange that I could associate that thought with being "uncomfortable."
At the onset of this entire affair, I never once thought that I'd be racing around a building in a wheelchair because I was too weak, or too tired, or my joints hurt too much to walk. During my first week here I had to start using a wheelchair because I was too tired and nauseated to walk unassisted. I had no idea that you could lose so much muscle tone in one week. It literally took me 15 minutes to walk 100 feet from the end of the hall to our temporary apartment. I can't imagine how many miles I walked in a regular work day, or the number of times I had to climb a flight of stairs. I can barely make it down a single flight without stopping and leaning on the banister every few seconds. Sometimes I catch myself shuffling instead of walking and I have to make a point of picking one foot up and placing it in front of the other. I never thought I'd have to make the conscious effort to walk.
I never thought that I'd be taking a bus to the hospital almost every day to receive treatment. We're lucky in that the complex we're living at charters a bus to MDAnderson Monday through Friday. You purchase tokens and are guaranteed a ride from 6:30 am until 7:30 pm every half hour. You start to recognize other patients and they recognize you in turn. I never thought that I'd be making cancer small talk with other people on a bus. It's just one of those random things that never occurs to you.
When Chris and I first started going to the Leukemia clinic, we'd notice certain people. I'm sure we were also noticed. We'd see the same people every week. They'd be sitting in the exact same spot in the waiting room, like a high school cafeteria. We started to learn the people who had been coming for a while and who were new like us. I start to get worried when I don't see someone for a while. You start to take a certain comfort in seeing familiar faces and knowing that these people are moving along just like you. There are a few missing faces that we wonder about, but then there are a few that have moved on to BMTs and are probably in isolation. I've started to notice newer patients observing us like we used to do to other patients. I wonder if I should just walk up and talk to them, or if they'd rather be left alone. On most days I'm not feeling up to a full conversation and it can be a little difficult to understand me when I'm wearing a mask.
I never thought I'd have to rely on a piece of engineered paper to protect me from the microbes floating free in the air. Chris is militant about me wearing a mask when I'm in public. I absolutely do not mind. I find it hard to believe that more patients don't wear their masks in public. Things that I could fight off could kill me now. In the past, if I got a tickle in my throat, I'd go in and get an antibiotic and that would be the end of it. Now I have to take antibiotics and antivirals just in case I might contract something. I can't walk around in bare feet just in case I step on something. It's disturbing to think that I used to check the mail in bare feet or flip flops.
I can't believe that some of my conversations start with, "Do you honestly think the insurance company thinks implanting my ovaries in my arm isn't experimental?" There are about a thousand medical procedures that have been lobbed around since I started receiving treatment that I had no idea existed. I've learned the difference between "standard of care" and "experimental". Standard of care is receiving a proven treatment. Experimental is receiving treatment that hasn't been extensively published. Organ transplants are now standard of care in most instances. This wasn't the case ten years ago. Maybe I'm making that up, or I'm just hoping really hard.
On a happier note, Dixie is feeling better. I won't be reassured until we know what's going on, but I'm encouraged that she's eating and her cough doesn't sound quite so horrible. We don't have any appointments on Monday and my fingers are crossed that we don't have to go to the ER for a transfusion. I'm pretty sure that I'll be going into the hospital Tuesday night for chemo round four. We'll keep everyone posted.
Chris asked me today if any aspect of this experience is making me uncomfortable. I honestly know what he was asking, but all I could think was I can't believe that I may die because I can't receive treatment. That was the one thought that came to mind and maybe it's strange that I could associate that thought with being "uncomfortable."
At the onset of this entire affair, I never once thought that I'd be racing around a building in a wheelchair because I was too weak, or too tired, or my joints hurt too much to walk. During my first week here I had to start using a wheelchair because I was too tired and nauseated to walk unassisted. I had no idea that you could lose so much muscle tone in one week. It literally took me 15 minutes to walk 100 feet from the end of the hall to our temporary apartment. I can't imagine how many miles I walked in a regular work day, or the number of times I had to climb a flight of stairs. I can barely make it down a single flight without stopping and leaning on the banister every few seconds. Sometimes I catch myself shuffling instead of walking and I have to make a point of picking one foot up and placing it in front of the other. I never thought I'd have to make the conscious effort to walk.
I never thought that I'd be taking a bus to the hospital almost every day to receive treatment. We're lucky in that the complex we're living at charters a bus to MDAnderson Monday through Friday. You purchase tokens and are guaranteed a ride from 6:30 am until 7:30 pm every half hour. You start to recognize other patients and they recognize you in turn. I never thought that I'd be making cancer small talk with other people on a bus. It's just one of those random things that never occurs to you.
When Chris and I first started going to the Leukemia clinic, we'd notice certain people. I'm sure we were also noticed. We'd see the same people every week. They'd be sitting in the exact same spot in the waiting room, like a high school cafeteria. We started to learn the people who had been coming for a while and who were new like us. I start to get worried when I don't see someone for a while. You start to take a certain comfort in seeing familiar faces and knowing that these people are moving along just like you. There are a few missing faces that we wonder about, but then there are a few that have moved on to BMTs and are probably in isolation. I've started to notice newer patients observing us like we used to do to other patients. I wonder if I should just walk up and talk to them, or if they'd rather be left alone. On most days I'm not feeling up to a full conversation and it can be a little difficult to understand me when I'm wearing a mask.
I never thought I'd have to rely on a piece of engineered paper to protect me from the microbes floating free in the air. Chris is militant about me wearing a mask when I'm in public. I absolutely do not mind. I find it hard to believe that more patients don't wear their masks in public. Things that I could fight off could kill me now. In the past, if I got a tickle in my throat, I'd go in and get an antibiotic and that would be the end of it. Now I have to take antibiotics and antivirals just in case I might contract something. I can't walk around in bare feet just in case I step on something. It's disturbing to think that I used to check the mail in bare feet or flip flops.
I can't believe that some of my conversations start with, "Do you honestly think the insurance company thinks implanting my ovaries in my arm isn't experimental?" There are about a thousand medical procedures that have been lobbed around since I started receiving treatment that I had no idea existed. I've learned the difference between "standard of care" and "experimental". Standard of care is receiving a proven treatment. Experimental is receiving treatment that hasn't been extensively published. Organ transplants are now standard of care in most instances. This wasn't the case ten years ago. Maybe I'm making that up, or I'm just hoping really hard.
On a happier note, Dixie is feeling better. I won't be reassured until we know what's going on, but I'm encouraged that she's eating and her cough doesn't sound quite so horrible. We don't have any appointments on Monday and my fingers are crossed that we don't have to go to the ER for a transfusion. I'm pretty sure that I'll be going into the hospital Tuesday night for chemo round four. We'll keep everyone posted.
Saturday, March 10, 2007
Tonight's Video
Day 58 (Part 2)
We wanted to do a short video tonight to preview what was happening next week, and to say a very heartfelt and special thank you to an old friend for his overwhelming generosity. George, Ann and I are forever endebited to you and your Wife for your help.
We wanted to do a short video tonight to preview what was happening next week, and to say a very heartfelt and special thank you to an old friend for his overwhelming generosity. George, Ann and I are forever endebited to you and your Wife for your help.
Thank You!
Day 58 (Part 1)
Today has been a very emotional day. There were no appointments, but we did talk to quite a few people. The only thing I have to say today is this: For as long as I shall live, I will never be able to count all of my blessings. For as long as I draw breath, I will never be able to say enough thank yous to all of the many people who have come together to save me.
Today has been a very emotional day. There were no appointments, but we did talk to quite a few people. The only thing I have to say today is this: For as long as I shall live, I will never be able to count all of my blessings. For as long as I draw breath, I will never be able to say enough thank yous to all of the many people who have come together to save me.
Friday, March 9, 2007
Ann's Medical Fund
Day 57
As I start off today's post I would like to say hello to all our new readers that have been linking in from the Baton Rouge Advocate's website. When we started this blog the intent was to inform Ann's friends and family what was going on with her from day to day, we never imagined we would reach such a wide audience.
The reason I'm using a picture of Ann at Jackson Hole, Wyoming in this post is that Ann had no appointments at MDA today. Well, that and honestly it's nice to
remember happier times when words like cancer, chemotherapy and leukemia were foreign to our vocabulary. At least for a few minutes anyway.
Ann spent most of the day practicing her knitting and taking pain meds. Meanwhile I was running around MDA trying to take care of a few essentials.
As most of you know we are having problems with our insurance company. They do not want to fund a Umbilical Cord Stem Cell Transplant because they believe that it is an "experimental" procedure and thus is not an allowed benefit. The insurance company was perfectly willing to allow Ann to have a BMT if the source of cells was from an adult donor, but unfortunately because Ann is mixed race no such donor exists. Also the leukemia is expected to relapse in the next few months. So Umbilical Cord Blood, which is quickly available is Ann's last and best chance to be cured.
We have placed our entire faith in the Doctor's and staff at MDA to write and present our review to our insurance company. However the risk to Ann is too great to allow her to be lost in a tug of war between the insurance company seeking to reduce costs, and protect it's share holders and MDA seeking to give her the best care possible.
Today I have established the a Tax-deductible, non-profit medical fund through the National Transplant Assistance Fund (NTAF). The NTAF is a 501c3 organization in good standing that provides fundraising assistance to people with catastrophic illnesses. Any money donated to the fund can only be used for medical expenses.
Please visit the NTAF Southeast Bone Marrow Transplant Fund in Honor of Ann Gregory and make a donation that will help save Ann's life. Our goal is steep but anything you can give will bring Ann that much closer to a second chance at a beautiful life.
As I start off today's post I would like to say hello to all our new readers that have been linking in from the Baton Rouge Advocate's website. When we started this blog the intent was to inform Ann's friends and family what was going on with her from day to day, we never imagined we would reach such a wide audience.The reason I'm using a picture of Ann at Jackson Hole, Wyoming in this post is that Ann had no appointments at MDA today. Well, that and honestly it's nice to
remember happier times when words like cancer, chemotherapy and leukemia were foreign to our vocabulary. At least for a few minutes anyway.Ann spent most of the day practicing her knitting and taking pain meds. Meanwhile I was running around MDA trying to take care of a few essentials.
As most of you know we are having problems with our insurance company. They do not want to fund a Umbilical Cord Stem Cell Transplant because they believe that it is an "experimental" procedure and thus is not an allowed benefit. The insurance company was perfectly willing to allow Ann to have a BMT if the source of cells was from an adult donor, but unfortunately because Ann is mixed race no such donor exists. Also the leukemia is expected to relapse in the next few months. So Umbilical Cord Blood, which is quickly available is Ann's last and best chance to be cured.
We have placed our entire faith in the Doctor's and staff at MDA to write and present our review to our insurance company. However the risk to Ann is too great to allow her to be lost in a tug of war between the insurance company seeking to reduce costs, and protect it's share holders and MDA seeking to give her the best care possible.
Today I have established the a Tax-deductible, non-profit medical fund through the National Transplant Assistance Fund (NTAF). The NTAF is a 501c3 organization in good standing that provides fundraising assistance to people with catastrophic illnesses. Any money donated to the fund can only be used for medical expenses.
Please visit the NTAF Southeast Bone Marrow Transplant Fund in Honor of Ann Gregory and make a donation that will help save Ann's life. Our goal is steep but anything you can give will bring Ann that much closer to a second chance at a beautiful life.
Thursday, March 8, 2007
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