june 19, 2012
"ONE YEAR UPDATE"
Hello Everyone,
I hope this email finds all of you enjoying the summer months. Everyone once and I while I bump into a person that tells me they miss my email updates. I flew into Little Rock, AR on Monday June 18 for my one year check up. So I thought I would take a minute and a few paragraphs and let you all know what I have been up to.
My flight down to Little Rock was good, but full of changes. As I was trying to leave Cleveland with a layover in Detroit to fly to Little Rock. A storm came a over the Detroit area and delayed my flight to Detroit. Due to the delay, I was going to miss my connection to Little Rock. So I was bumped to a flight to Atlanta. So I got to sit around Cleveland for a few more drinks, then it was off too Atlanta. The layover in Atlanta was several hours long, but the Atlanta airport was full of some of the finest looking ladies on the eastside of the Mississppi, so the people watching was breath taking. By the time I got into Little Rock, it was after 9:00 p.m. central standard time. Well past my normal bed time, as most of you know.
Tuesday morning started with a MRI. Which means I basically went back to sleep for a hour. Otherwise you spend a hour looking at a round dome about 1/2" from your face. After snoring my way through the MRI, I had a blood draw, and lots of x-rays of my spine that looks like a train wreck. I have been off my weekly treatments for 2 weeks, which I will talk more about later in the email. The blood draw this morning allows UAMS to see what my body is doing when I am not under all the cancer drugs to make my body function normally. On Wednesday morning I have every Myeloma patients favorite medical procedure. The dreaded "Bone marrow biopsy." The technicians that preform the bone marrow biopsy are real professionals down here in Little Rock, since they preform about 20 biopsy's a day. A bone marrow biopsy is a lot like a root canal. No matter how good the dentist is, the procedure is still going to be painful and unpleasant for the patient. After the biopsy on Wednesday I am done with my medical procedures for the day. Then on Thursday I see the oncologist. The oncologist that I have been seeing in Little Rock for over a year is no longer on staff at UAMS. Dr. Nair decided to move on, so I am going to be seeing a new oncologist named Dr. Waheed. I first met Dr. Waheed when Dr. Nair took a few days off to spend sometime with his new baby girl. I was really comfortable with Dr. Waheed while Dr. Nair was out, so I decided to move my treatment over to her.
Prior to my trip to Little Rock, I was in North Carolina visiting some family and enjoying life. As of May 1, I have been hanging my hat in Vermilion, OH at the marina. Trying to spend as much time as possible on Lake Erie or at the pool. I have managed to fit in a few trip to the beach in Vermilion. A normal week for me is my infusion/chemo treatment on Monday mornings. While most of you are rushing off to work, I am able to stroll into a clinic, get a splash of poison to keep the weeds (cancer) in check, and move on to other things. The treatments on Monday's don't mess me up too much, the steroids and other oral cancer pills mess with me more. The steroids make it tough to sleep and make me crabby and short tempered, since I am all wired up and anxious. Then the oral cancer pills have me up and down all night. My biggest obstacal is fatigue from the the medicines and damage to my body from the treatment last year to jump start my body and get it running correctly. When a Myeloma patient looks at the big picture, ALL THIS TREATMENT IS A HUGE BLESSING. All the individuals that were diagnosed with this disease 10 years ago were not able to battle the disease as well as I am. Since medical science was not able to treat Myeloma as well as they are today. So I am blessed with being able to still be here with all of you.
As of right now I don't have any back surgery scheduled for this year or next year. I have been told by a back surgeon that I have found in Little Rock that I am currently too stable. It's a miracle that I am this stable!!! Not having to use a walker or be in a wheel chair due to all the damage done to my bones and bone marrow from the Myeloma. Which turned my healthy bone marrow into a jello soft sponge, prior to me getting stabilized. So I am sure that I will have some major back surgery in the distance future.
Back in March of this year, I was able to get some much needed work started on my house. The block foundation on my house has been decaying for the past decade due to the building methods, types of clay in the soil in my area, and some sloppy workmanship done more that 60 years ago. Due to all the spare time I have on my hands these days. Not to mention all the talented friends I have in the building industry. I was able to have 2 of my foundation walls replaced and additional waterproofing completed.
If I was given the choice I wouldn't hesitate to be healthy, but I am currently able to live a life and lifestyle that would make a good number of people jealous. So cancer has brought me lots of blessings at the same time. Like having lots of spare time to go fishing and travel. I have made a good deal of new friends due to all the fishing I have been enjoying. The city of Little Rock and all the staff at UAMS (University of Arkansas for Medical Sciences), the oncology staff at University Hospital main campus and the Westlake campus. Plus all the friends that I have meet from cancer and the friends that I have been blessed to get reunited with due to my illness.
As we all know there is always a silver lining. It's up to us to realize and enjoy the "present time" we are in. Because we can't have tomorrow back and everybody you see in the obituary would give all they have for one more day, if they new yesterday was their last day. Walk through any hospital, mall, or airport and look around you, if you think you have problems or issues. Look at the poor souls that have lost limbs, or children in wheel chairs. That sure makes me feel blessed and my problems shrink away.
I will close the email THANKING all of YOU for your support, smiling faces, along with the positive input. I am blessed to be in remission for over a year now. Only the good die young, so I don't have to worry able going anywhere for several decades. Jeff
Hello Everyone,
I hope this email finds all of you enjoying the summer months. Everyone once and I while I bump into a person that tells me they miss my email updates. I flew into Little Rock, AR on Monday June 18 for my one year check up. So I thought I would take a minute and a few paragraphs and let you all know what I have been up to.
My flight down to Little Rock was good, but full of changes. As I was trying to leave Cleveland with a layover in Detroit to fly to Little Rock. A storm came a over the Detroit area and delayed my flight to Detroit. Due to the delay, I was going to miss my connection to Little Rock. So I was bumped to a flight to Atlanta. So I got to sit around Cleveland for a few more drinks, then it was off too Atlanta. The layover in Atlanta was several hours long, but the Atlanta airport was full of some of the finest looking ladies on the eastside of the Mississppi, so the people watching was breath taking. By the time I got into Little Rock, it was after 9:00 p.m. central standard time. Well past my normal bed time, as most of you know.
Tuesday morning started with a MRI. Which means I basically went back to sleep for a hour. Otherwise you spend a hour looking at a round dome about 1/2" from your face. After snoring my way through the MRI, I had a blood draw, and lots of x-rays of my spine that looks like a train wreck. I have been off my weekly treatments for 2 weeks, which I will talk more about later in the email. The blood draw this morning allows UAMS to see what my body is doing when I am not under all the cancer drugs to make my body function normally. On Wednesday morning I have every Myeloma patients favorite medical procedure. The dreaded "Bone marrow biopsy." The technicians that preform the bone marrow biopsy are real professionals down here in Little Rock, since they preform about 20 biopsy's a day. A bone marrow biopsy is a lot like a root canal. No matter how good the dentist is, the procedure is still going to be painful and unpleasant for the patient. After the biopsy on Wednesday I am done with my medical procedures for the day. Then on Thursday I see the oncologist. The oncologist that I have been seeing in Little Rock for over a year is no longer on staff at UAMS. Dr. Nair decided to move on, so I am going to be seeing a new oncologist named Dr. Waheed. I first met Dr. Waheed when Dr. Nair took a few days off to spend sometime with his new baby girl. I was really comfortable with Dr. Waheed while Dr. Nair was out, so I decided to move my treatment over to her.
Prior to my trip to Little Rock, I was in North Carolina visiting some family and enjoying life. As of May 1, I have been hanging my hat in Vermilion, OH at the marina. Trying to spend as much time as possible on Lake Erie or at the pool. I have managed to fit in a few trip to the beach in Vermilion. A normal week for me is my infusion/chemo treatment on Monday mornings. While most of you are rushing off to work, I am able to stroll into a clinic, get a splash of poison to keep the weeds (cancer) in check, and move on to other things. The treatments on Monday's don't mess me up too much, the steroids and other oral cancer pills mess with me more. The steroids make it tough to sleep and make me crabby and short tempered, since I am all wired up and anxious. Then the oral cancer pills have me up and down all night. My biggest obstacal is fatigue from the the medicines and damage to my body from the treatment last year to jump start my body and get it running correctly. When a Myeloma patient looks at the big picture, ALL THIS TREATMENT IS A HUGE BLESSING. All the individuals that were diagnosed with this disease 10 years ago were not able to battle the disease as well as I am. Since medical science was not able to treat Myeloma as well as they are today. So I am blessed with being able to still be here with all of you.
As of right now I don't have any back surgery scheduled for this year or next year. I have been told by a back surgeon that I have found in Little Rock that I am currently too stable. It's a miracle that I am this stable!!! Not having to use a walker or be in a wheel chair due to all the damage done to my bones and bone marrow from the Myeloma. Which turned my healthy bone marrow into a jello soft sponge, prior to me getting stabilized. So I am sure that I will have some major back surgery in the distance future.
Back in March of this year, I was able to get some much needed work started on my house. The block foundation on my house has been decaying for the past decade due to the building methods, types of clay in the soil in my area, and some sloppy workmanship done more that 60 years ago. Due to all the spare time I have on my hands these days. Not to mention all the talented friends I have in the building industry. I was able to have 2 of my foundation walls replaced and additional waterproofing completed.
If I was given the choice I wouldn't hesitate to be healthy, but I am currently able to live a life and lifestyle that would make a good number of people jealous. So cancer has brought me lots of blessings at the same time. Like having lots of spare time to go fishing and travel. I have made a good deal of new friends due to all the fishing I have been enjoying. The city of Little Rock and all the staff at UAMS (University of Arkansas for Medical Sciences), the oncology staff at University Hospital main campus and the Westlake campus. Plus all the friends that I have meet from cancer and the friends that I have been blessed to get reunited with due to my illness.
As we all know there is always a silver lining. It's up to us to realize and enjoy the "present time" we are in. Because we can't have tomorrow back and everybody you see in the obituary would give all they have for one more day, if they new yesterday was their last day. Walk through any hospital, mall, or airport and look around you, if you think you have problems or issues. Look at the poor souls that have lost limbs, or children in wheel chairs. That sure makes me feel blessed and my problems shrink away.
I will close the email THANKING all of YOU for your support, smiling faces, along with the positive input. I am blessed to be in remission for over a year now. Only the good die young, so I don't have to worry able going anywhere for several decades. Jeff
september 25, 2012
"THE UPDATE THAT NO ONE WANTS TO HEAR"
GREETINGS TO ALL OF YOU (MY SUPPORT TEAM), YOU ARE GREATLY NEEDED AND APPRECIATED
Depending on what part of the grapevine you are on, you may or may not have heard the news. Unfortunately it's crappy news. Which is that my cancer has come out of remission. When I got the news of this at the doctor's office, it took me by surprise due to how great things have been going and how wonderful my summer has been. When I was told about the cancer originally, several years ago. I was in so much pain due to the 4 fractures in my back, followed by the 3 fractures in my chest. That I was just relieved to hear that the doctors where starting to figure out why I was in so much pain and discomfort. To the point that I was like cancer is what is causing all of this? Will if you can make this pain go away, I am sure I can deal with this thing that you call Multiple something??? (Myeloma). Just make a little or some of this pain go away.
I have spent so much time fishing and hanging with friends and family this past summer that it has really been one of the best times in my life. Things seemed to be going so well health wise, which has not been the norm for quiet sometime. That after my one year check up I had gotten sloppy and for the months of July and August I did not send blood samples to Little Rock for them to test. Fortunately for me, I have a awesome medical team in Cleveland looking out for me. My oncologist in Cleveland, Dr. Erica Campagnaro who as my family will tell you is the type of physician that every cancer patient wishes they had looking over them. Dr. Campagnaro was been one of the many blessings that have come from the cancer. Dr. Campagnaro ran a cancer check on me in late August and caught a significant rise in my cancer levels and gave me the bad news.
Due to the busy schedule that I keep, I don't have time for all the possible treatment that may be ahead of me. Come on here, I have the Fall and Winter months booked solid. How am I supposed to fit in this unexpected cancer treatment at the last minute?? I have a reputation to up hold since I have spent more time on the water than anyone else in my marina this year. All this treatment is not going to help out my tan or the sunscreen companies that I have been keeping in business all summer long. How am I supposed to keep up with the fishing and beer parties on Lake Erie when I am socializing down in Little Rock?
I am starting the writing of this email update on Wednesday September 19, 2012. I am spending most of this week undergoing testing in Little Rock, AR at UAMS. Which is the University of Arkansas for Medical Sciences for any new reader's to my email updates. I will be seeing my oncologist in Little Rock, Dr. Sara Waheed at 3:00 p.m. on Thursday to see what options UAMS thinks I should pursue. As most of you will recall, I underwent a tandem stem cell transplant (2 transplants) at UAMS about a year and half ago. After which I was in remission for just over a year before finding out that Mr. Myeloma longed for some quality time in Little Rock, AR, and wanted to go another round or bout with the "Red Devil and his 3 wicked sister's." This is one of the nicer nicknames that us Myeloma patients have for some of the heavy duty chemo that they use to knock our cancer back into it's place.
THURSDAY AFTERNOON, SEPTEMBER 20, 2012
I managed to dodge a bullet. Or if you have ever been to Lost Wages, Nevada (Las Vegas) I broke even. While I was in Little Rock, AR they had me undergo a MRI and a PET Scan. A PET Scan is kind of like a MRI, except that the PET Scan will show active cancer growth. Both the MRI and PET Scan came back clean. The elevated cancer levels that they see in my blood are still much higher than they should be, but everything else looks good. I was expecting Dr. Waheed to have me get a port installed on Friday and start chemo on Saturday. Dr. Waheed suggested that we take the wait and see approach and hope and expect to see the cancer level in my blood decline. If the cancer levels in my blood continue to rise, then I head back to Little Rock and undergo chemo treatment.
What a nice surprise! So I will be heading back to Ohio and will be heading back out on Lake Erie to get the last month of fishing in before the weather takes a turn towards the winter months. I will return to Little Rock in 6 months for another check up. This email has a happy ending! Be sure to enjoy your Halloween parties, Jeff
GREETINGS TO ALL OF YOU (MY SUPPORT TEAM), YOU ARE GREATLY NEEDED AND APPRECIATED
Depending on what part of the grapevine you are on, you may or may not have heard the news. Unfortunately it's crappy news. Which is that my cancer has come out of remission. When I got the news of this at the doctor's office, it took me by surprise due to how great things have been going and how wonderful my summer has been. When I was told about the cancer originally, several years ago. I was in so much pain due to the 4 fractures in my back, followed by the 3 fractures in my chest. That I was just relieved to hear that the doctors where starting to figure out why I was in so much pain and discomfort. To the point that I was like cancer is what is causing all of this? Will if you can make this pain go away, I am sure I can deal with this thing that you call Multiple something??? (Myeloma). Just make a little or some of this pain go away.
I have spent so much time fishing and hanging with friends and family this past summer that it has really been one of the best times in my life. Things seemed to be going so well health wise, which has not been the norm for quiet sometime. That after my one year check up I had gotten sloppy and for the months of July and August I did not send blood samples to Little Rock for them to test. Fortunately for me, I have a awesome medical team in Cleveland looking out for me. My oncologist in Cleveland, Dr. Erica Campagnaro who as my family will tell you is the type of physician that every cancer patient wishes they had looking over them. Dr. Campagnaro was been one of the many blessings that have come from the cancer. Dr. Campagnaro ran a cancer check on me in late August and caught a significant rise in my cancer levels and gave me the bad news.
Due to the busy schedule that I keep, I don't have time for all the possible treatment that may be ahead of me. Come on here, I have the Fall and Winter months booked solid. How am I supposed to fit in this unexpected cancer treatment at the last minute?? I have a reputation to up hold since I have spent more time on the water than anyone else in my marina this year. All this treatment is not going to help out my tan or the sunscreen companies that I have been keeping in business all summer long. How am I supposed to keep up with the fishing and beer parties on Lake Erie when I am socializing down in Little Rock?
I am starting the writing of this email update on Wednesday September 19, 2012. I am spending most of this week undergoing testing in Little Rock, AR at UAMS. Which is the University of Arkansas for Medical Sciences for any new reader's to my email updates. I will be seeing my oncologist in Little Rock, Dr. Sara Waheed at 3:00 p.m. on Thursday to see what options UAMS thinks I should pursue. As most of you will recall, I underwent a tandem stem cell transplant (2 transplants) at UAMS about a year and half ago. After which I was in remission for just over a year before finding out that Mr. Myeloma longed for some quality time in Little Rock, AR, and wanted to go another round or bout with the "Red Devil and his 3 wicked sister's." This is one of the nicer nicknames that us Myeloma patients have for some of the heavy duty chemo that they use to knock our cancer back into it's place.
THURSDAY AFTERNOON, SEPTEMBER 20, 2012
I managed to dodge a bullet. Or if you have ever been to Lost Wages, Nevada (Las Vegas) I broke even. While I was in Little Rock, AR they had me undergo a MRI and a PET Scan. A PET Scan is kind of like a MRI, except that the PET Scan will show active cancer growth. Both the MRI and PET Scan came back clean. The elevated cancer levels that they see in my blood are still much higher than they should be, but everything else looks good. I was expecting Dr. Waheed to have me get a port installed on Friday and start chemo on Saturday. Dr. Waheed suggested that we take the wait and see approach and hope and expect to see the cancer level in my blood decline. If the cancer levels in my blood continue to rise, then I head back to Little Rock and undergo chemo treatment.
What a nice surprise! So I will be heading back to Ohio and will be heading back out on Lake Erie to get the last month of fishing in before the weather takes a turn towards the winter months. I will return to Little Rock in 6 months for another check up. This email has a happy ending! Be sure to enjoy your Halloween parties, Jeff
december 13, 2012
Hello Santa's Helper's,
You are down to 11 days till Christmas.
I drove down to Little Rock, Arkansas on Sunday December 9, with my mother in my old faithful Buick Park Avenue. It took us over 13 hours to make the trip. The best time I have ever made to Little Rock was with my heavy footed Daytona 500 runner up, sister. We made it down to Little Rock in just over 12 hours with her behind the wheel for most of the drive. As you may recall my last trip to the south was back in September. When I was in Little Rock in September I planned on under going chemotherapy to knock my Multiple Myeloma back into remission. To the surprise of my family, medical team in Cleveland, Ohio, and myself. The medical team in Little Rock decided to take the wait and see approach. Hoping that the raise we saw in my cancer levels was just a spike.
Since September my cancer levels have continued to raise. Which is the reason for this trip back to Little Rock. Lately my fatigue levels have been rather high, even for me. I have been sleeping 12 hours a day, on average. I also had to cancel several dinner plans due to a lack of energy.
Bright and early on Monday morning I had a 6:00am PET Scan, which is kind of like a MRI except that a PET Scan allows the doctors and medical staff to view active cancer growth. Prior to a PET Scan you have to undergo a "special diet." These are the phases and terms you hear the medical folks use. This special diet bacially requires you to eat nothing for almost 12 hours. So as a patient become more fimiliar with medical precedures related to having cancer, you learn to schedule testing like the PET Scan for early morning. Rather than having to go all day without eating. After the Pet Scan I had a blood draw followed by a afternoon MRI. On a normal visit to Little Rock, the first week of a patients visit is spent undergoing testing and spending all kinds of healthcare money. All this testing is done so that the medical team in Little Rock can come up with medical treatment options. Rather than just taking the medical opinions from another medical institution. UAMS tends to attack the cancer rather than treat the cancer.
Over the past 3 years I have close to 20 bone marrow biopsy's. I have just recently gotten back to my normal body weight of 145lbs or where I was prior to all the fun cancer stuff. Even through I have gotten back to my chuncky self. My bones are still rather brital and fragile from the myeloma. Which adds to the pain, discomfort, and lack of enjoyment (love) for a bone marrow biopsy. Basically I don't have much left (for them to shoot at) in my lower hip, upper butt check area due to all these medical procedures. So this go around, I deceided to take the girly man approach and under went sedation for my biopsy. This made the biopsy much easier on me, but the sedation turned the 1 hour procedure, into a all day love affair. So on Tuesday I got to endure the "Special diet", this also includes me not taking any of the medinice that I have been on and my body has become a custom to over the past 3 years. So I was in a crappy mood and in a good deal of pain before my 1:00p.m. biopsy. The medical staff at the doctors office wanted to know why I wasn't my usual ball busting self, giving the medical staff a hard time. After expaining the "Special Diet", they cut me a good deal of slack. Prior to my biopsy, we met with a PA or Phyicans Assiatance over at the MIRT center or Myeloma Instiute for Research and Therapy (doctor's office). He informed my mother and I that my cancer levels have climided to 5.0. Back in Setpember when we came to Little Rock that same cancer level was at 1.9. They see cancer levels that high and higher everyday. This consist increase just tells the medical team in Little Rock that my cancer wants some Christmas Kool-Aid (chemo). After we got that wonderful news we were off and trucking over to the one day surgery office for my biopsy. Can you tell that I was all smiles at this point of the day?
The staff in the OR (operating room) and recovery room treated me and the rest of the patients like family and they all had a great sense of humor to break of the stress of the patients. The bone marrow team was kind of surprised to see me in the OR rather than in the bone marrow office. I told them the pain from the procedure was getting old and they seemed surprised. After the procedure the women preforming the biospy told my mother that after working on me she agreed that the sedation and OR was the best way for me to experince a bone marrow biopsy due to all the bone damaged and lack of areas for her to shoot at. So that pretty much covers my medical experience for Tuesday.
So who wants to hear what the doctor had to say??? On Wednesday I meet with my oncologist in Little Rock Dr. Sarah Waheed at 12 noon. On the short term we definethly need to take care of my rasing cancer level. On the long term we need to figure out a way to keep me in remission. During the visit with the doc I learned that a good deal of the fatigue at this point is the cancer using up my energy and eating away at my bone marrow and stem cells. Dr. Waheed wants to go after more stem cells and another stem cell transplant (stem cell transplant #3). Due to my age and good health other than the Myeloma they have lots of excellant options for me. From undergoing another stem cell transplant to some of the new experimental drugs that are only available in Little Rock, or some of the new drugs that have recently come on the market. I currently have 22 milion stem cells in the beer cooler at the hospital. Which is a life saving cell for someone with Myeloma. The chemotherapy kills the good and bad stem cells. Even though a have a good deal of stem cells in the beer cooler. We are going to undergo another collection of the stem cells due to my young age and the fact that this round of treatment may very will elimate any future chances of harvesting any good stem cells. So when I left the doctors appointment yesterday we were all waiting to hear what the health insurance company would allow us to do. If the insurance company gives the okay there could be the creamy-corn smell in my future. For those of you that don't remember or are new readers. Due to the chemicals they use to freeze and preserve the stem cells in the giant beer cooler at the hospital. A patient may smell like creamy corn for a few days or hours after receiving a stem cell transplant.
So for the next few days I have some minor testing as we sit on our hands and wait for the powers that be to make their decesion. If we get the approval for the 3rd transplant I will undergo 4 days of heavy duty Kool-aid with steriods. Then I will undergo growth shots to try and make my body produce milions and millions of stem cells to be collected. Followed by the tune up or transplant.
So that is enough for this weeks update, get back to those Christmas cards, and wrapping presents. I guess my invitation to your Christmas Party must have gotten lost in the mail. Jeff
You are down to 11 days till Christmas.
I drove down to Little Rock, Arkansas on Sunday December 9, with my mother in my old faithful Buick Park Avenue. It took us over 13 hours to make the trip. The best time I have ever made to Little Rock was with my heavy footed Daytona 500 runner up, sister. We made it down to Little Rock in just over 12 hours with her behind the wheel for most of the drive. As you may recall my last trip to the south was back in September. When I was in Little Rock in September I planned on under going chemotherapy to knock my Multiple Myeloma back into remission. To the surprise of my family, medical team in Cleveland, Ohio, and myself. The medical team in Little Rock decided to take the wait and see approach. Hoping that the raise we saw in my cancer levels was just a spike.
Since September my cancer levels have continued to raise. Which is the reason for this trip back to Little Rock. Lately my fatigue levels have been rather high, even for me. I have been sleeping 12 hours a day, on average. I also had to cancel several dinner plans due to a lack of energy.
Bright and early on Monday morning I had a 6:00am PET Scan, which is kind of like a MRI except that a PET Scan allows the doctors and medical staff to view active cancer growth. Prior to a PET Scan you have to undergo a "special diet." These are the phases and terms you hear the medical folks use. This special diet bacially requires you to eat nothing for almost 12 hours. So as a patient become more fimiliar with medical precedures related to having cancer, you learn to schedule testing like the PET Scan for early morning. Rather than having to go all day without eating. After the Pet Scan I had a blood draw followed by a afternoon MRI. On a normal visit to Little Rock, the first week of a patients visit is spent undergoing testing and spending all kinds of healthcare money. All this testing is done so that the medical team in Little Rock can come up with medical treatment options. Rather than just taking the medical opinions from another medical institution. UAMS tends to attack the cancer rather than treat the cancer.
Over the past 3 years I have close to 20 bone marrow biopsy's. I have just recently gotten back to my normal body weight of 145lbs or where I was prior to all the fun cancer stuff. Even through I have gotten back to my chuncky self. My bones are still rather brital and fragile from the myeloma. Which adds to the pain, discomfort, and lack of enjoyment (love) for a bone marrow biopsy. Basically I don't have much left (for them to shoot at) in my lower hip, upper butt check area due to all these medical procedures. So this go around, I deceided to take the girly man approach and under went sedation for my biopsy. This made the biopsy much easier on me, but the sedation turned the 1 hour procedure, into a all day love affair. So on Tuesday I got to endure the "Special diet", this also includes me not taking any of the medinice that I have been on and my body has become a custom to over the past 3 years. So I was in a crappy mood and in a good deal of pain before my 1:00p.m. biopsy. The medical staff at the doctors office wanted to know why I wasn't my usual ball busting self, giving the medical staff a hard time. After expaining the "Special Diet", they cut me a good deal of slack. Prior to my biopsy, we met with a PA or Phyicans Assiatance over at the MIRT center or Myeloma Instiute for Research and Therapy (doctor's office). He informed my mother and I that my cancer levels have climided to 5.0. Back in Setpember when we came to Little Rock that same cancer level was at 1.9. They see cancer levels that high and higher everyday. This consist increase just tells the medical team in Little Rock that my cancer wants some Christmas Kool-Aid (chemo). After we got that wonderful news we were off and trucking over to the one day surgery office for my biopsy. Can you tell that I was all smiles at this point of the day?
The staff in the OR (operating room) and recovery room treated me and the rest of the patients like family and they all had a great sense of humor to break of the stress of the patients. The bone marrow team was kind of surprised to see me in the OR rather than in the bone marrow office. I told them the pain from the procedure was getting old and they seemed surprised. After the procedure the women preforming the biospy told my mother that after working on me she agreed that the sedation and OR was the best way for me to experince a bone marrow biopsy due to all the bone damaged and lack of areas for her to shoot at. So that pretty much covers my medical experience for Tuesday.
So who wants to hear what the doctor had to say??? On Wednesday I meet with my oncologist in Little Rock Dr. Sarah Waheed at 12 noon. On the short term we definethly need to take care of my rasing cancer level. On the long term we need to figure out a way to keep me in remission. During the visit with the doc I learned that a good deal of the fatigue at this point is the cancer using up my energy and eating away at my bone marrow and stem cells. Dr. Waheed wants to go after more stem cells and another stem cell transplant (stem cell transplant #3). Due to my age and good health other than the Myeloma they have lots of excellant options for me. From undergoing another stem cell transplant to some of the new experimental drugs that are only available in Little Rock, or some of the new drugs that have recently come on the market. I currently have 22 milion stem cells in the beer cooler at the hospital. Which is a life saving cell for someone with Myeloma. The chemotherapy kills the good and bad stem cells. Even though a have a good deal of stem cells in the beer cooler. We are going to undergo another collection of the stem cells due to my young age and the fact that this round of treatment may very will elimate any future chances of harvesting any good stem cells. So when I left the doctors appointment yesterday we were all waiting to hear what the health insurance company would allow us to do. If the insurance company gives the okay there could be the creamy-corn smell in my future. For those of you that don't remember or are new readers. Due to the chemicals they use to freeze and preserve the stem cells in the giant beer cooler at the hospital. A patient may smell like creamy corn for a few days or hours after receiving a stem cell transplant.
So for the next few days I have some minor testing as we sit on our hands and wait for the powers that be to make their decesion. If we get the approval for the 3rd transplant I will undergo 4 days of heavy duty Kool-aid with steriods. Then I will undergo growth shots to try and make my body produce milions and millions of stem cells to be collected. Followed by the tune up or transplant.
So that is enough for this weeks update, get back to those Christmas cards, and wrapping presents. I guess my invitation to your Christmas Party must have gotten lost in the mail. Jeff
december 22, 2012
"MERRY CHRISTMAS"
Hello Holiday People,
It's getting down to the wire as far as your Christmas shopping. I have been hanging around Little Rock, AR with my mother. We have been blessed to be able to get back into the Family Home that I have stayed at in the past, on my vacations (medical trips) to Little Rock. The Family Home is a hotel or guest house for cancer patients and their caregivers on the 2nd floor. The 1st floor is for parents of preemie babies. The Family Home gives a patient and his or her caregiver a bedroom or a room like a hotel room with a connected bathroom. There are also shared kitchens for the residence to cook and use so that we don't have to eat out at restaurants unless we feel like eating out. The Family Home helps take some of the financial burden off a cancer patient and their family while they stay in Little Rock. It's an amazing place to say the least.
In order to ask the health insurance company for a 3rd transplant. UAMS has to put together a whole packet of information about me, kind of like a tax return. The health insurance company wants a little bite more information other than my shoe size and the fact that I have a deadly cancer, before the invest a large some of money into my health and well being. In my previous email I told you what tests I had already aced and completed. I still needed to complete a pulmonary test or lung test and a ultra sound of my ticker or heart. For the lung test, I have a seat in this fish tank looking chamber, then you blow into this device with the door open. So it's kind of looks like a police DWI machine at 2am in the morning, except for the fish tank chamber and the fact that I was sober. The second part of the DWI test is done with the fish tank door closed. I completed the lung test after the doctors appointment on Wednesday afternoon. The following day on Thursday, I got to under go a ultra sound for my heart. Other than the previous ultra sounds for my first two stem cell transplants, I have only seen ultra sounds in the movies for expecting mothers, since I don't have any children. So they loaded me up with the warm jelly, and had their way with me to inspect my heart. Passed another test! The last test for this horse to complete was the EKG test. Finished that exam in under 5 minutes. Walk in the park!
The health insurance company wants to look over the race car or race horse before they invest enough money into me that they could buy a rather nice house in this market. You can't really blame them for not wanting to invest in a 3rd stem cell transplant, then the horse dies of a heart attack. My good looks also play into the final decision made by the health insurance company. I guess that gives me about 50/50 odds.
So UAMS had my packet/tax return ready to go by last Friday and sent it off to the powers that be, for acceptance. Most of the time I have spent in Little Rock has been for medical treatment only. So I am not really used to having free time or feeling good while in Little Rock. Usually a Myeloma patient feels like he or she got ran over by a 18 wheeler, then backed over by an asphalt steam roller. All this is brought on by the chemo, minor surgery and biopsy's. So my mom and I have been keeping busy reading books, and people watching at the library and at bars. So things have been rather easy for the past week waiting for the decision. Back to the stem cell transplant for a line or two. Most insurance companies only allow 2 stem cell transplants. So I am planning on the insurance company refusing my request for the 3rd transplant.
I went over to UAMS this past Tuesday morning and checked with the staff at the hospital on my status of my request for the transplant, and nothing....I was told to check back on Friday. So back to my busy schedule.....bartender. On Thursday morning I got a phone call from my case worker at the insurance company. The case worker explained to me that she had my packet ready to go and they were going to have a conference call about my case with the insurance companies doctors on Thursday afternoon. She told me she would get back to me with the insurance companies decision at the end of the day on Thursday or first thing Friday morning.
Friday morning I was laying around the Family Home thinking about what I was going to do to occupy my day when I got the call from the insurance company. Should I pick up the phone? Or let it got to voice-mail??? After picking up the phone, I found out that my Christmas present was coming early this year in the form of a 3rd stem cell transplant!! I am not going to get religious on you, but I do honestly believe that there was a few prayers answered by this decision. I guess "he" still wants me around on earth to help someone out.
So my easy schedule in Little Rock is about to come to an end. After the Christmas Holiday I will get my medical port. Which is kind of like a air hose or USP port on a computer. This will allow the hospital staff to administer the Christmas kool-aid (chemo) and give me all kinds of other medicine's without having to use a needle. On this phase of the treatment they will give me the heavy duty, knock my hair out, suck your thumb, knock the jolly green giant to his knees and make him beg for his momma chemo for 4 days (lucky for me mom is in Little Rock with me). Then I will receive growth shots that will cause my body to produce millions of stem cells for collection. Once my body is ready to bust with stem cells, they will remove the current port and add the garden hose size port. This super sized port feels like you have a golf tee lodged in between your shoulder blade and neck area, this makes sleeping so comfortable. This garden hose allows the staff to suck out millions of stem cells. Once they have harvested the stem cells they will give me the option of taking a week off treatment or going on to phase II.
I will explain each part of the treatment in more detail for you as I move through the process. I just wanted to share the good news about my 3rd stem cell transplant with all of you.
So until our next few paragraphs together. Be sure to enjoy another blessed Holiday with your Family!!! Jeff
Hello Holiday People,
It's getting down to the wire as far as your Christmas shopping. I have been hanging around Little Rock, AR with my mother. We have been blessed to be able to get back into the Family Home that I have stayed at in the past, on my vacations (medical trips) to Little Rock. The Family Home is a hotel or guest house for cancer patients and their caregivers on the 2nd floor. The 1st floor is for parents of preemie babies. The Family Home gives a patient and his or her caregiver a bedroom or a room like a hotel room with a connected bathroom. There are also shared kitchens for the residence to cook and use so that we don't have to eat out at restaurants unless we feel like eating out. The Family Home helps take some of the financial burden off a cancer patient and their family while they stay in Little Rock. It's an amazing place to say the least.
In order to ask the health insurance company for a 3rd transplant. UAMS has to put together a whole packet of information about me, kind of like a tax return. The health insurance company wants a little bite more information other than my shoe size and the fact that I have a deadly cancer, before the invest a large some of money into my health and well being. In my previous email I told you what tests I had already aced and completed. I still needed to complete a pulmonary test or lung test and a ultra sound of my ticker or heart. For the lung test, I have a seat in this fish tank looking chamber, then you blow into this device with the door open. So it's kind of looks like a police DWI machine at 2am in the morning, except for the fish tank chamber and the fact that I was sober. The second part of the DWI test is done with the fish tank door closed. I completed the lung test after the doctors appointment on Wednesday afternoon. The following day on Thursday, I got to under go a ultra sound for my heart. Other than the previous ultra sounds for my first two stem cell transplants, I have only seen ultra sounds in the movies for expecting mothers, since I don't have any children. So they loaded me up with the warm jelly, and had their way with me to inspect my heart. Passed another test! The last test for this horse to complete was the EKG test. Finished that exam in under 5 minutes. Walk in the park!
The health insurance company wants to look over the race car or race horse before they invest enough money into me that they could buy a rather nice house in this market. You can't really blame them for not wanting to invest in a 3rd stem cell transplant, then the horse dies of a heart attack. My good looks also play into the final decision made by the health insurance company. I guess that gives me about 50/50 odds.
So UAMS had my packet/tax return ready to go by last Friday and sent it off to the powers that be, for acceptance. Most of the time I have spent in Little Rock has been for medical treatment only. So I am not really used to having free time or feeling good while in Little Rock. Usually a Myeloma patient feels like he or she got ran over by a 18 wheeler, then backed over by an asphalt steam roller. All this is brought on by the chemo, minor surgery and biopsy's. So my mom and I have been keeping busy reading books, and people watching at the library and at bars. So things have been rather easy for the past week waiting for the decision. Back to the stem cell transplant for a line or two. Most insurance companies only allow 2 stem cell transplants. So I am planning on the insurance company refusing my request for the 3rd transplant.
I went over to UAMS this past Tuesday morning and checked with the staff at the hospital on my status of my request for the transplant, and nothing....I was told to check back on Friday. So back to my busy schedule.....bartender. On Thursday morning I got a phone call from my case worker at the insurance company. The case worker explained to me that she had my packet ready to go and they were going to have a conference call about my case with the insurance companies doctors on Thursday afternoon. She told me she would get back to me with the insurance companies decision at the end of the day on Thursday or first thing Friday morning.
Friday morning I was laying around the Family Home thinking about what I was going to do to occupy my day when I got the call from the insurance company. Should I pick up the phone? Or let it got to voice-mail??? After picking up the phone, I found out that my Christmas present was coming early this year in the form of a 3rd stem cell transplant!! I am not going to get religious on you, but I do honestly believe that there was a few prayers answered by this decision. I guess "he" still wants me around on earth to help someone out.
So my easy schedule in Little Rock is about to come to an end. After the Christmas Holiday I will get my medical port. Which is kind of like a air hose or USP port on a computer. This will allow the hospital staff to administer the Christmas kool-aid (chemo) and give me all kinds of other medicine's without having to use a needle. On this phase of the treatment they will give me the heavy duty, knock my hair out, suck your thumb, knock the jolly green giant to his knees and make him beg for his momma chemo for 4 days (lucky for me mom is in Little Rock with me). Then I will receive growth shots that will cause my body to produce millions of stem cells for collection. Once my body is ready to bust with stem cells, they will remove the current port and add the garden hose size port. This super sized port feels like you have a golf tee lodged in between your shoulder blade and neck area, this makes sleeping so comfortable. This garden hose allows the staff to suck out millions of stem cells. Once they have harvested the stem cells they will give me the option of taking a week off treatment or going on to phase II.
I will explain each part of the treatment in more detail for you as I move through the process. I just wanted to share the good news about my 3rd stem cell transplant with all of you.
So until our next few paragraphs together. Be sure to enjoy another blessed Holiday with your Family!!! Jeff
