january 1, 2013
WE ARE UP AND ROLLING
Happy New Year!
So two years ago I was busy catching a flight out of Little Rock, Arkansas on New Year's Eve. With a final destination of Cleveland, Ohio after just finishing up my first stem cell transplant. This New Year's Eve, I was busy getting my port installed, so I can receive chemotherapy for my 3rd stem cell transplant. Quiet a big change from the life I lived as a younger man, I must be getting older.
Until recently, there hasn't been too much going on in my world. There is no doubt that the Holidays are the most wonderful time of the year. But when the Holiday falls in the middle of the week, it can really slow things down. Especially for anyone trying to run a business, or in my case, receive non-emergency medical procedures. This is part of the reason for all the down time I have been experiencing over the past few weeks waiting on the insurance company.
Remember when you were young and you got out of hand at a family function, and your parents had to correct you. Then they told you when you got home they were going to spank you, because they didn't want to discipline you in front of others. Remember how you felt on the ride home, waiting on the spanking, knowing the unpleasant things heading your way in the near future. That is kind of how I felt on New Years Eve. So after getting out of the hospital after 4:00p.m. we had a little bite to eat back at the ranch (Family Home). I had a few drinks to enjoy myself, and just laid down. Waiting for the chemo to start on Tuesday morning. Now just so you know for the record, I was so well behaved as a child that I almost never had a spanking, or that unpleasant car ride. But my sister...now there are some discipline stories there.
This past Friday around 3:00p.m. I got the green light from the insurance company and all the red tape was completed. So I headed over to the MIRT Center at the hospital (Myeloma Institute for Research and Therapy). I prefer to work on things face to face, rather than over the phone or over the Internet. The oncologist that I normally see was taking some well deserved time off, due to the Holiday. My family and myself are anxious to get all the treatment going, so I asked for the first opening with a doctor at the MIRT Center. Lucky for me they had a opening on Monday morning, New Years Eve.
When we got to the MIRT center on Monday morning, we found out that the doctor that I had the appointment with was out sick. I am guessing that he had the brown bottle, 24hr flu (I am kidding for any of you that don't know me that well). Since that doctor was out I was going to get the next available doctor or mystery doctor, as my sister put it. To the surprise of myself and my family, I was going to be seen by Dr. Bart Barlogie. Dr. Barlogie is a true pioneer in the Myeloma world. The reason for the amazing world renown faculty in Little Rock is due to several decades of hard work from Dr. Barlogie and the rest of the amazing staff at UAMS. Due to all their hard work, people with this disease (Myeloma) are able to live longer. So I got to sit down and bust balls with the man, the myth, and the legend, and that was just a few of the nice things that Dr. Barlogie had to say about me.
After the visit with the doc, I had to head over to the surgery area to get my port installed. From a doctors view point, a port has to be an extremely easy procedure, ABC's, if you will. From a patients view point, it's kind of like getting stitches or sutures. With this type of port they are working around your neck and shoulder area. So depending on what kind of hands a doctor has, and how skilled that particular physician may be. A patient may not even know they are having a procedure done. Or a patient may feel like the doc has their entire arm pushed into your shoulder blade area. On Monday I was in the caring hands of Dr. Molly, or Molly as she told me to call her ( I don't recall her last name). After the procedure I decide to call her Molly "hatchet", since she was working or cutting on me with a scalpel to install the port. Lucky for me, Molly was skilled with the hatchet. I was in amazing hands, and the installation of this port was the best line placement I have had thus far. Let's hope that I am blessed to be in the care of Molly "hatchet" in the future. If you run into Molly, keep the "hatchet" thing between you and me.
I know that most of you are like myself before I got cancer, and have probably never had the joy of having a line or port installed. Let me walk you through the procedure, in case the road of life has a port in your future. The type of port that I have is exterior, so it flops or hangs from my shoulder blade down to about my belly button or elbow. The port has 3 lines that connect into one line that enters my body, that leads to a vein. With the 3 lines, I can receive up to 3 different infusions at one time. Or sometimes one of the lines will be difficult or temporary clogged. So 3 lines gives extra options, rather than depending on one line. They have you lay down on a operating table. I have to ask for extra pillows and blankets (no additional charge for the extra blankets and pillows) to prop up my head due to my unique posture that I have been sporting around the past few years. They take a large blue plastic blanket or apron and cover your head, they prop up the blue blanket so you don't get nervous or claustrophobic, depending on how cool under pressure/procedure the patient my be. I tend to shoot the breeze with the physician and staff getting the latest football lines or any good jokes the staff may know. A patient needs to know if the physician is up to date with religious, sexual, or political jokes. It would only be a normal reaction to flinch or move when you see someone coming at you with a needle or scalpel, so they take you out of the equation with the blue blanket. So the patent isn't moving as the doctor is cutting away, working her trade, go Molly. They numb you up with a local anesthetic so you don't feel the cutting, just like with stitches. In order to get the line placed in the right area they send in a wire. For my readers in the construction trades it looks like ceiling wire, for the rest of you, it looks like a thin coat hanger. Once they get the wire in the right place, they send the port down the wire, remove wire. Finish the patient up with a few stitches to hold everything in place. Like I said, ABC's for those with MD after their name.
On New Years Day I started the new year with the Christmas kool-aid (chemo). They give a MM (Multiple Myeloma) patient under going out-patient chemotherapy this black nylon bag about the size of a camera bag. Inside the nylon bag, you have two bags of different sizes filled with the goodies. The smaller bag has a red liquid, the larger bag is a mixture of 3 clear liquids. The drug or chemical in the red bag doesn't play well with others, so it gets it's own bag. The clear bag gets replaced every 24hrs and the red bag is with me for the 4 day duration. The common name among the MM patients for the black nylon camera bag is the "Red Devil and his 3 wicked sisters". Kind of true and catchy. There are two small pumps about the size of old school cell phones to pump the poison into me 24/7 for 4 days. It takes a while for a MM patient, especially a guy, to get used to walking around with the nylon bag. The nurse I had today told us one of her patients called the nylon black bag, her little "Black poodle". I can't get more than 3 feet from the bag without getting a yank on my chain or port, saying "going somewhere with out me? I don't think so". During the day I normally remember to bring the bag with me on life's little adventures. When I get up in the middle of the night to take a leak, now that's a different story. The first few evenings I forget to take the bag with me, on the fifth and sixth days when I am off the bag, I am busy looking for the bag in the dark before heading to the head. A good pull on the port will stop any man, woman, or child dead in their tracks. I could use some other very colorful ways of explaining the bag/patient relationship, but I will try and keep this email clean and child friendly. Lucky for me the bag and I will only be working together for 4 days. As soon as I get used to bringing the nylon bag on life's little adventures, it goes away. A friend of mine that passed away last year had to deal with the bag, the devil, and the nasty sisters for a 16 day chemo cycle. I nicknamed him the "Iron man".
I am also on 20mg of steroids to work with the chemo, plus a good deal of other oral cancer drugs. They take me off the steroids and the chemo on the same day, which happens to be this coming Saturday morning. Talk about having the rug pulled out from under you!! So my body will crash from coming off the steroids and my body systems and markers will continue to fall as the chemo continues to kill everything good and bad in my body.
So now you know what I will be up to for the next few days. A person on chemo has to become a germaphobe to try and avoid catching a cold or infection, since I won't have a immune system. So enjoy what is left of college football, and I will be in touch next week! Jeff
Happy New Year!
So two years ago I was busy catching a flight out of Little Rock, Arkansas on New Year's Eve. With a final destination of Cleveland, Ohio after just finishing up my first stem cell transplant. This New Year's Eve, I was busy getting my port installed, so I can receive chemotherapy for my 3rd stem cell transplant. Quiet a big change from the life I lived as a younger man, I must be getting older.
Until recently, there hasn't been too much going on in my world. There is no doubt that the Holidays are the most wonderful time of the year. But when the Holiday falls in the middle of the week, it can really slow things down. Especially for anyone trying to run a business, or in my case, receive non-emergency medical procedures. This is part of the reason for all the down time I have been experiencing over the past few weeks waiting on the insurance company.
Remember when you were young and you got out of hand at a family function, and your parents had to correct you. Then they told you when you got home they were going to spank you, because they didn't want to discipline you in front of others. Remember how you felt on the ride home, waiting on the spanking, knowing the unpleasant things heading your way in the near future. That is kind of how I felt on New Years Eve. So after getting out of the hospital after 4:00p.m. we had a little bite to eat back at the ranch (Family Home). I had a few drinks to enjoy myself, and just laid down. Waiting for the chemo to start on Tuesday morning. Now just so you know for the record, I was so well behaved as a child that I almost never had a spanking, or that unpleasant car ride. But my sister...now there are some discipline stories there.
This past Friday around 3:00p.m. I got the green light from the insurance company and all the red tape was completed. So I headed over to the MIRT Center at the hospital (Myeloma Institute for Research and Therapy). I prefer to work on things face to face, rather than over the phone or over the Internet. The oncologist that I normally see was taking some well deserved time off, due to the Holiday. My family and myself are anxious to get all the treatment going, so I asked for the first opening with a doctor at the MIRT Center. Lucky for me they had a opening on Monday morning, New Years Eve.
When we got to the MIRT center on Monday morning, we found out that the doctor that I had the appointment with was out sick. I am guessing that he had the brown bottle, 24hr flu (I am kidding for any of you that don't know me that well). Since that doctor was out I was going to get the next available doctor or mystery doctor, as my sister put it. To the surprise of myself and my family, I was going to be seen by Dr. Bart Barlogie. Dr. Barlogie is a true pioneer in the Myeloma world. The reason for the amazing world renown faculty in Little Rock is due to several decades of hard work from Dr. Barlogie and the rest of the amazing staff at UAMS. Due to all their hard work, people with this disease (Myeloma) are able to live longer. So I got to sit down and bust balls with the man, the myth, and the legend, and that was just a few of the nice things that Dr. Barlogie had to say about me.
After the visit with the doc, I had to head over to the surgery area to get my port installed. From a doctors view point, a port has to be an extremely easy procedure, ABC's, if you will. From a patients view point, it's kind of like getting stitches or sutures. With this type of port they are working around your neck and shoulder area. So depending on what kind of hands a doctor has, and how skilled that particular physician may be. A patient may not even know they are having a procedure done. Or a patient may feel like the doc has their entire arm pushed into your shoulder blade area. On Monday I was in the caring hands of Dr. Molly, or Molly as she told me to call her ( I don't recall her last name). After the procedure I decide to call her Molly "hatchet", since she was working or cutting on me with a scalpel to install the port. Lucky for me, Molly was skilled with the hatchet. I was in amazing hands, and the installation of this port was the best line placement I have had thus far. Let's hope that I am blessed to be in the care of Molly "hatchet" in the future. If you run into Molly, keep the "hatchet" thing between you and me.
I know that most of you are like myself before I got cancer, and have probably never had the joy of having a line or port installed. Let me walk you through the procedure, in case the road of life has a port in your future. The type of port that I have is exterior, so it flops or hangs from my shoulder blade down to about my belly button or elbow. The port has 3 lines that connect into one line that enters my body, that leads to a vein. With the 3 lines, I can receive up to 3 different infusions at one time. Or sometimes one of the lines will be difficult or temporary clogged. So 3 lines gives extra options, rather than depending on one line. They have you lay down on a operating table. I have to ask for extra pillows and blankets (no additional charge for the extra blankets and pillows) to prop up my head due to my unique posture that I have been sporting around the past few years. They take a large blue plastic blanket or apron and cover your head, they prop up the blue blanket so you don't get nervous or claustrophobic, depending on how cool under pressure/procedure the patient my be. I tend to shoot the breeze with the physician and staff getting the latest football lines or any good jokes the staff may know. A patient needs to know if the physician is up to date with religious, sexual, or political jokes. It would only be a normal reaction to flinch or move when you see someone coming at you with a needle or scalpel, so they take you out of the equation with the blue blanket. So the patent isn't moving as the doctor is cutting away, working her trade, go Molly. They numb you up with a local anesthetic so you don't feel the cutting, just like with stitches. In order to get the line placed in the right area they send in a wire. For my readers in the construction trades it looks like ceiling wire, for the rest of you, it looks like a thin coat hanger. Once they get the wire in the right place, they send the port down the wire, remove wire. Finish the patient up with a few stitches to hold everything in place. Like I said, ABC's for those with MD after their name.
On New Years Day I started the new year with the Christmas kool-aid (chemo). They give a MM (Multiple Myeloma) patient under going out-patient chemotherapy this black nylon bag about the size of a camera bag. Inside the nylon bag, you have two bags of different sizes filled with the goodies. The smaller bag has a red liquid, the larger bag is a mixture of 3 clear liquids. The drug or chemical in the red bag doesn't play well with others, so it gets it's own bag. The clear bag gets replaced every 24hrs and the red bag is with me for the 4 day duration. The common name among the MM patients for the black nylon camera bag is the "Red Devil and his 3 wicked sisters". Kind of true and catchy. There are two small pumps about the size of old school cell phones to pump the poison into me 24/7 for 4 days. It takes a while for a MM patient, especially a guy, to get used to walking around with the nylon bag. The nurse I had today told us one of her patients called the nylon black bag, her little "Black poodle". I can't get more than 3 feet from the bag without getting a yank on my chain or port, saying "going somewhere with out me? I don't think so". During the day I normally remember to bring the bag with me on life's little adventures. When I get up in the middle of the night to take a leak, now that's a different story. The first few evenings I forget to take the bag with me, on the fifth and sixth days when I am off the bag, I am busy looking for the bag in the dark before heading to the head. A good pull on the port will stop any man, woman, or child dead in their tracks. I could use some other very colorful ways of explaining the bag/patient relationship, but I will try and keep this email clean and child friendly. Lucky for me the bag and I will only be working together for 4 days. As soon as I get used to bringing the nylon bag on life's little adventures, it goes away. A friend of mine that passed away last year had to deal with the bag, the devil, and the nasty sisters for a 16 day chemo cycle. I nicknamed him the "Iron man".
I am also on 20mg of steroids to work with the chemo, plus a good deal of other oral cancer drugs. They take me off the steroids and the chemo on the same day, which happens to be this coming Saturday morning. Talk about having the rug pulled out from under you!! So my body will crash from coming off the steroids and my body systems and markers will continue to fall as the chemo continues to kill everything good and bad in my body.
So now you know what I will be up to for the next few days. A person on chemo has to become a germaphobe to try and avoid catching a cold or infection, since I won't have a immune system. So enjoy what is left of college football, and I will be in touch next week! Jeff
january 8, 2013
MADE IT THROUGH ANOTHER WEEK
Hello Everyone,
Time for another weekly email update from Little Rock. So pull up a chair, don't forget to stop at the fridge or coffee maker and grab your favorite beverage, and sit back for another set of paragraphs on MM cancer treatment.
Whenever I am going through some difficult times I always tend to think of the movie Shawshank Redemption. When the main charterer Andy Duefrane has to crawl through a sewage pipe full of all kinds of nasty goodies to move onto better days and pastures.
As you will recall from last week's update, I have been busy mentally and physically dealing with the nylon bag, red devil, and the nasty sister's. The laymen logic behind this round of chemotherapy is to hit my body system so hard that the chemo will kill everything good and bad. This will tell the body that I never want to go through this again and never grow these cancers cells again. Start acting like you had some proper childhood discipline, and grow up like normal healthy cells. So the initial round of chemotherapy is a doosy, high dose chemo. I haven't been hit with a chemo cycle this high, prior to this. I knew I was going to be be expecting a rather high dose. But my friends at the UAMS Pharmacy gave me my money's worth, and then some. I was given a very similar high dose chemo to this 2 years ago, and did okay with the side effects considering.
So last Friday rolls around and I am losing the nylon bag, the red devil, and the nasty sister's on Saturday morning. Sounds like something to look forward to to me! So far things have been bearable. Due to all the poison they are pumping into me I don't have any appetite from the effect of the chemo, but also from all the fluids (chemo) coming in. The steroids kind of pump you up and make you feel better. So on Friday night we headed out to this little local Cajun restaurant to meet up with a friend and enjoy ourselves. I didn't have much of an appetite for the reasons already mentioned. But had a great time at dinner, went home and headed off to bed. Looking forward to my new found freedom on Saturday morning.
About 1:00 a.m. Saturday I wake up and feel totally backed up as far my digestive track, can't sleep, and almost feel like I was out drinking at a bachelor party. At this point I am wondering if I can make it to the bathroom to throw up, but yet I feel dehydrated. So I would like to drink some water. But I think if I swallowed my spit, I might lose whatever is about 2/3 up my esophagus and about to end up all over me and the bed. What to do?? What would cause this? So I take a minute and go into Detective Harry Callahan mode. It can't be from drinking, I haven't had a drink since New Year's Eve. I can't sleep? I can't eat? Sounds like true love gone bad, but I don't recall seeing any future ex-wives at the restaurant a few hours before. So that can't be it...... Somebody must have stuck something funny in my chemo bag. So if you have any clues to give, contact us at the Detective Harry Callahan hot-line. I won't due that to my worst enemy, missing with their chemo bag. That is a new low for someone.....
I can only figure that they really increased the chemo dose on that last cycle, like nothing I have ever experienced. Nothing like a little paint thinner, and mustard gas to wake a person up in the morning. I still am experiencing some minor hearing loss in one of my ears. Which isn't uncommon, I will let you try and figure out which ear it is next time we meet.
Once a patient starts a transplant or treatment cycle at UAMS, you go over to the hospital at least once a day for blood work and treatment, 7 days a week. So it is kind of like a full time job. One of the nice things about going over to the hospital. Especially the way I was feeling on Saturday morning. Is that they will try and give you whatever medicine and blood products you requirement to improve your situation. However on Saturday, I was so far in the "hurt box" the sun coming up, going down, or anything in between felt bad. Sometime you will see a patient that was walking into the clinic the day before and is now coming back the next day in a wheel chair due to how they are feeling, or how hard the chemo has effected them. A patient always has the choice of moving the treatment into the hospital ward. I don't think I need to explain anything more to you on how most patients feel about that option.
So I make it back to the family home and lay down. That lasted about 5 minutes before I was assuming the position over our multi-purpose porcelain trash can. Going through the dry heaves now because I didn't really have anything on board. As the dry heaves slowed down, my buddy Andy Duefrane came back to me and a small smile came across my face. I had just passed a large brown log in the sewer drain and things were going to get better each day, as I move through the treatment process.
This week I am feeling a little better and able to eat a little more each day. As my white blood cell, red blood cell, and all my other blood makers continue to drop, I will have less and less energy, for obvious reasons. After a MM patient loses the bag and your blood levels start to decline. I began 2 days (this past Sunday), just like any sports you may have played in your youth. This phase of treatment requires me to make 2 trips to the hospital daily to receive growth shots. So the nurses are slowing running out of parts of my body to shoot at. I am getting track marks over my arms and belly from the growth shots that will make my body start producing healthy stem cells to be harvested. The harvesting is the next step in the process to give you a quick glimpse of next weeks update.
When I am not at the hospital I try and read and relax. But when you are feeling like you have seas sickness, reading isn't on the top of your list. So I end up watching TV, or sleeping. I would rather be spending my time doing a lot of other things, but my body needs to relax and rebuild.
So until next week, be sure to enjoy yourself. As difficult a time that we are all going through in our lives with health or financial matters. Remeber that there are people all around us that are going through difficult times that make ours seem like pebbles. So look around you and fine a good local charity to give some time or money to. YOU WILL BE THE ONE WALKING AWAY WITH A SPRING IN YOUR STEP, AND SMILE ON YOUR FACE!
P.S. Going to get my offical cancer crew cut at 6:00 p.m. cst 1/8/2013
Hello Everyone,
Time for another weekly email update from Little Rock. So pull up a chair, don't forget to stop at the fridge or coffee maker and grab your favorite beverage, and sit back for another set of paragraphs on MM cancer treatment.
Whenever I am going through some difficult times I always tend to think of the movie Shawshank Redemption. When the main charterer Andy Duefrane has to crawl through a sewage pipe full of all kinds of nasty goodies to move onto better days and pastures.
As you will recall from last week's update, I have been busy mentally and physically dealing with the nylon bag, red devil, and the nasty sister's. The laymen logic behind this round of chemotherapy is to hit my body system so hard that the chemo will kill everything good and bad. This will tell the body that I never want to go through this again and never grow these cancers cells again. Start acting like you had some proper childhood discipline, and grow up like normal healthy cells. So the initial round of chemotherapy is a doosy, high dose chemo. I haven't been hit with a chemo cycle this high, prior to this. I knew I was going to be be expecting a rather high dose. But my friends at the UAMS Pharmacy gave me my money's worth, and then some. I was given a very similar high dose chemo to this 2 years ago, and did okay with the side effects considering.
So last Friday rolls around and I am losing the nylon bag, the red devil, and the nasty sister's on Saturday morning. Sounds like something to look forward to to me! So far things have been bearable. Due to all the poison they are pumping into me I don't have any appetite from the effect of the chemo, but also from all the fluids (chemo) coming in. The steroids kind of pump you up and make you feel better. So on Friday night we headed out to this little local Cajun restaurant to meet up with a friend and enjoy ourselves. I didn't have much of an appetite for the reasons already mentioned. But had a great time at dinner, went home and headed off to bed. Looking forward to my new found freedom on Saturday morning.
About 1:00 a.m. Saturday I wake up and feel totally backed up as far my digestive track, can't sleep, and almost feel like I was out drinking at a bachelor party. At this point I am wondering if I can make it to the bathroom to throw up, but yet I feel dehydrated. So I would like to drink some water. But I think if I swallowed my spit, I might lose whatever is about 2/3 up my esophagus and about to end up all over me and the bed. What to do?? What would cause this? So I take a minute and go into Detective Harry Callahan mode. It can't be from drinking, I haven't had a drink since New Year's Eve. I can't sleep? I can't eat? Sounds like true love gone bad, but I don't recall seeing any future ex-wives at the restaurant a few hours before. So that can't be it...... Somebody must have stuck something funny in my chemo bag. So if you have any clues to give, contact us at the Detective Harry Callahan hot-line. I won't due that to my worst enemy, missing with their chemo bag. That is a new low for someone.....
I can only figure that they really increased the chemo dose on that last cycle, like nothing I have ever experienced. Nothing like a little paint thinner, and mustard gas to wake a person up in the morning. I still am experiencing some minor hearing loss in one of my ears. Which isn't uncommon, I will let you try and figure out which ear it is next time we meet.
Once a patient starts a transplant or treatment cycle at UAMS, you go over to the hospital at least once a day for blood work and treatment, 7 days a week. So it is kind of like a full time job. One of the nice things about going over to the hospital. Especially the way I was feeling on Saturday morning. Is that they will try and give you whatever medicine and blood products you requirement to improve your situation. However on Saturday, I was so far in the "hurt box" the sun coming up, going down, or anything in between felt bad. Sometime you will see a patient that was walking into the clinic the day before and is now coming back the next day in a wheel chair due to how they are feeling, or how hard the chemo has effected them. A patient always has the choice of moving the treatment into the hospital ward. I don't think I need to explain anything more to you on how most patients feel about that option.
So I make it back to the family home and lay down. That lasted about 5 minutes before I was assuming the position over our multi-purpose porcelain trash can. Going through the dry heaves now because I didn't really have anything on board. As the dry heaves slowed down, my buddy Andy Duefrane came back to me and a small smile came across my face. I had just passed a large brown log in the sewer drain and things were going to get better each day, as I move through the treatment process.
This week I am feeling a little better and able to eat a little more each day. As my white blood cell, red blood cell, and all my other blood makers continue to drop, I will have less and less energy, for obvious reasons. After a MM patient loses the bag and your blood levels start to decline. I began 2 days (this past Sunday), just like any sports you may have played in your youth. This phase of treatment requires me to make 2 trips to the hospital daily to receive growth shots. So the nurses are slowing running out of parts of my body to shoot at. I am getting track marks over my arms and belly from the growth shots that will make my body start producing healthy stem cells to be harvested. The harvesting is the next step in the process to give you a quick glimpse of next weeks update.
When I am not at the hospital I try and read and relax. But when you are feeling like you have seas sickness, reading isn't on the top of your list. So I end up watching TV, or sleeping. I would rather be spending my time doing a lot of other things, but my body needs to relax and rebuild.
So until next week, be sure to enjoy yourself. As difficult a time that we are all going through in our lives with health or financial matters. Remeber that there are people all around us that are going through difficult times that make ours seem like pebbles. So look around you and fine a good local charity to give some time or money to. YOU WILL BE THE ONE WALKING AWAY WITH A SPRING IN YOUR STEP, AND SMILE ON YOUR FACE!
P.S. Going to get my offical cancer crew cut at 6:00 p.m. cst 1/8/2013
january, 17 2013
YOU ARE MISSING IT
Let me start this week's update from Little Rock with THANKING all of you for your replies, cards, and support in all different shapes, and sizes, that are totally tailored to each of you. It always brings a nice grin to my face.
There is always so much going on down here in Little Rock that even though I try and share so much information with you and the emails are as long and detailed as I can make them. I am only sharing a spit in the bucket of what really goes on down here in Little Rock. For example last Thursday the MIRT Center held a question and answer session for patients and caregivers. Basically they had one of the clinical physician come to this conference room after he was done with his crazy day of treating patients and locked him in this room with MM patients and caregivers, not letting him out until we where all done having our way with him. From month to month the amount of people that attend these patient education sessions will very, due to the amount of MM patients in town that have any energy at the end of the day and which physician is attending or hosting the session. So this doctor sits down, picture a catcher in a baseball game digging in getting ready to receive some pitches from the pitcher. The pitcher on the mound today is known to be extremely tough on catchers and throws very fast, hard, and direct. So the doctor settles in. I kind of wanted to give the guy a drink so he could have a second to enjoy himself after just finishing up another busy day at the office. So here come the pitches from the mound and they are throwing some serious smoke. They are coming in hard, fast, and one after another, the catcher barely has time catch the ball and lay the ball down before another hot pitches is coming into his mitt, hard and heavy. This guy took these hard and heavy pitches (questions) all evening long and made it look easy. Because he wasn't holding back with his answers and he was speaking straight from his heart and from experience. I have never seen a doctor or any speaker speak that directly and frankly, and make it look easy.
That was just one evening. Everyday at UAMS the MM patients are surrounded by amazing staff like this that are dealing with people that are fighting cancer. So things aren't really as good as I paint them down here.............Things are even better!!
So lace up some comfortable walking shoes as I try to walk you around the Winthrop P. Rockefeller Cancer Institute
Winning the battle against "Mr. pain in the ass" myeloma (Cancer) is like a full time job. So we start our days early, around 5:00 a.m. Before heading into what can be a difficult and challenging day. We stop at the local Starbucks to grab a cup of coffee or hot chocolate depending on what type of treatment I am going through on a given week, and what my stomach can handle on any given day. This stop at Starbucks is not only for the coffee, it's also for public relations. You never know, there might be some attractive hoochie-mama that has lots of questions about myeloma. Who better to answer them for her? Or there might be a attractive women that could answer some trivial myeloma question that I may have. So I have to consistency be on my "A" game, to be ready for these challenges that might be around any give corner. This is a heavy burden to carry, but you won't hear any compliants out of me. As the 7:00 a.m. hour rolls around, it's time to head to work, and off to the hospital we go. After parking the car we head into the Winthrop P. Rockefeller Cancer Institute. The Rockefeller Institute is a 2 year old state of the art building. They just opened the institute 2 years ago when I started my treatment in Little Rock, worked out nice for this guy, almost like they knew I was heading this way. When you walk into the lobby of the institute on Monday and Tuesday morning you will see all the newly diagnosed patients crazing around like a herd of cattle. They are all in town to start a week of boot boot camp filled with education and testing, they just don't know that at this point. One of the many things that separates Little Rock from other cancer faculties is the vast amount of education that they feed to you. All of this information gives the patients comfort and options. Since they are able to communicate with the physician and help with the decision making, it also takes a good deal of the "not knowing" fear off the table. The new patients hanging around in the lobby don't necessary know all of the good things that lay ahead of them this week, due to their wise decision to come to UAMS for a first or second opinion. So they all have this anxious, nervous look on there faces. As I walk past them, I just want to pat them on the butt like a baseball coach and say "Welcome to the party, pal" like Bruce Willis in the movie Die Hard. Once you hear the words Multiple Myeloma a patients life will never be the same. It's know where close to being over due to all the advances in medicine, but their lives will never be the same.
Let's take the elevator up to the 4th floor. On the 4th floor of the cancer institute they have this big party room. The room is filled with all these wild and crazy women (nurses) that like to put their hands all over me and ask me questions. They enjoy playing with my port, and they are willing to give me all kinds of drugs to make me feel better. These wild women are busy parting and hanging out from 7:00 a.m - 7:00 p.m., 7 days a week. I am going to let you in on a big secret, but you can't tell anyone and you are going to have to delete this email after you read this. I could get throw out of the program for sharing this information with you. The secret is...They give good port at infusion 4!! Depending on what type of treatment or blood product I need on a particular day. We can be at Infusion 4 from 2 to 4 hours. The reason that I am able to get out of Infusion 4 so fast is because other than the myeloma, I am a healthy individual. Some people make Infusion 4 an all day love affair.
As I leave infusion 4 over the next few days, I have to be on the look out for Molly "Hatchet". You remember Molly "Hatchet" don't you? We are going to be needing her serves in the next few days. So if you have Molly's work number, be sure to pass it a long. Since I have been the dart board for the party girls at infusion 4 with my twice a day growth shots. My body should be producing millions and millions of stem cells. Down in the harvesting or collection area of the hospital, they are are going to hook me up to this big movie projector from the 80's looking machine, and suck out my blood. Separating the stem cells from the blood, and returning my blood to me minus the stem cells. In order to get the most blood flow we need to super-size my port. So I need to upgrade to what feels like the water supply line to your toilet (look on the left side of your toilet the next time you are in the area). It feels like I have a 1/2 white toilet water supply line sticking out of my neck region. Now the doctors and staff at the hospital know that this larger line is uncomfortable compared to the smaller line that I currently have, so they only leave this larger line in as long as nessary. They will continue this collection process for at least 2 days. If I produce 4 million stem cells or more they will stop the collection proecess. For a stem cell transplant you need about 4 million stem cells. I current have about 20 million stem cells in a large beer cooler in the basement of the hospital that we could use for transplant # 3. But why dip into the savings account if you can make the money with a few days of hard work.
After the stem cell collection or harvesting I will be given the option of taking a little time off treatment. I am going to ask my oncologist in Little Rock to let me go straight through treatment. Which shouldn't be a problem, I prefer to move forward to the transplant phase. Before I can have my transplant, I have to go another boxing match with the red devil and his nasty sister's. But I will leave those details for next week. No need to rush into chemotherapy.
I am happy to report that I haven't had to experience the large loss in weight that I had with some of the other chemo cycles of years past. My raw mouth and gums are alomst fully recovered, which is normal for undergoing such a high-dose chemo. Where else can a guy spend his afternoons, reading, watching tv, and sleeping. Most of the time most of us would think that someone who spends theirs days and weeks carring on in that matter needs to go and get a job, or is lazy. I can even suck my thumb in the process and no one turns a head in disbelief.
So until next week start getting all of your financail records ready for your favorite tax person.
Let me start this week's update from Little Rock with THANKING all of you for your replies, cards, and support in all different shapes, and sizes, that are totally tailored to each of you. It always brings a nice grin to my face.
There is always so much going on down here in Little Rock that even though I try and share so much information with you and the emails are as long and detailed as I can make them. I am only sharing a spit in the bucket of what really goes on down here in Little Rock. For example last Thursday the MIRT Center held a question and answer session for patients and caregivers. Basically they had one of the clinical physician come to this conference room after he was done with his crazy day of treating patients and locked him in this room with MM patients and caregivers, not letting him out until we where all done having our way with him. From month to month the amount of people that attend these patient education sessions will very, due to the amount of MM patients in town that have any energy at the end of the day and which physician is attending or hosting the session. So this doctor sits down, picture a catcher in a baseball game digging in getting ready to receive some pitches from the pitcher. The pitcher on the mound today is known to be extremely tough on catchers and throws very fast, hard, and direct. So the doctor settles in. I kind of wanted to give the guy a drink so he could have a second to enjoy himself after just finishing up another busy day at the office. So here come the pitches from the mound and they are throwing some serious smoke. They are coming in hard, fast, and one after another, the catcher barely has time catch the ball and lay the ball down before another hot pitches is coming into his mitt, hard and heavy. This guy took these hard and heavy pitches (questions) all evening long and made it look easy. Because he wasn't holding back with his answers and he was speaking straight from his heart and from experience. I have never seen a doctor or any speaker speak that directly and frankly, and make it look easy.
That was just one evening. Everyday at UAMS the MM patients are surrounded by amazing staff like this that are dealing with people that are fighting cancer. So things aren't really as good as I paint them down here.............Things are even better!!
So lace up some comfortable walking shoes as I try to walk you around the Winthrop P. Rockefeller Cancer Institute
Winning the battle against "Mr. pain in the ass" myeloma (Cancer) is like a full time job. So we start our days early, around 5:00 a.m. Before heading into what can be a difficult and challenging day. We stop at the local Starbucks to grab a cup of coffee or hot chocolate depending on what type of treatment I am going through on a given week, and what my stomach can handle on any given day. This stop at Starbucks is not only for the coffee, it's also for public relations. You never know, there might be some attractive hoochie-mama that has lots of questions about myeloma. Who better to answer them for her? Or there might be a attractive women that could answer some trivial myeloma question that I may have. So I have to consistency be on my "A" game, to be ready for these challenges that might be around any give corner. This is a heavy burden to carry, but you won't hear any compliants out of me. As the 7:00 a.m. hour rolls around, it's time to head to work, and off to the hospital we go. After parking the car we head into the Winthrop P. Rockefeller Cancer Institute. The Rockefeller Institute is a 2 year old state of the art building. They just opened the institute 2 years ago when I started my treatment in Little Rock, worked out nice for this guy, almost like they knew I was heading this way. When you walk into the lobby of the institute on Monday and Tuesday morning you will see all the newly diagnosed patients crazing around like a herd of cattle. They are all in town to start a week of boot boot camp filled with education and testing, they just don't know that at this point. One of the many things that separates Little Rock from other cancer faculties is the vast amount of education that they feed to you. All of this information gives the patients comfort and options. Since they are able to communicate with the physician and help with the decision making, it also takes a good deal of the "not knowing" fear off the table. The new patients hanging around in the lobby don't necessary know all of the good things that lay ahead of them this week, due to their wise decision to come to UAMS for a first or second opinion. So they all have this anxious, nervous look on there faces. As I walk past them, I just want to pat them on the butt like a baseball coach and say "Welcome to the party, pal" like Bruce Willis in the movie Die Hard. Once you hear the words Multiple Myeloma a patients life will never be the same. It's know where close to being over due to all the advances in medicine, but their lives will never be the same.
Let's take the elevator up to the 4th floor. On the 4th floor of the cancer institute they have this big party room. The room is filled with all these wild and crazy women (nurses) that like to put their hands all over me and ask me questions. They enjoy playing with my port, and they are willing to give me all kinds of drugs to make me feel better. These wild women are busy parting and hanging out from 7:00 a.m - 7:00 p.m., 7 days a week. I am going to let you in on a big secret, but you can't tell anyone and you are going to have to delete this email after you read this. I could get throw out of the program for sharing this information with you. The secret is...They give good port at infusion 4!! Depending on what type of treatment or blood product I need on a particular day. We can be at Infusion 4 from 2 to 4 hours. The reason that I am able to get out of Infusion 4 so fast is because other than the myeloma, I am a healthy individual. Some people make Infusion 4 an all day love affair.
As I leave infusion 4 over the next few days, I have to be on the look out for Molly "Hatchet". You remember Molly "Hatchet" don't you? We are going to be needing her serves in the next few days. So if you have Molly's work number, be sure to pass it a long. Since I have been the dart board for the party girls at infusion 4 with my twice a day growth shots. My body should be producing millions and millions of stem cells. Down in the harvesting or collection area of the hospital, they are are going to hook me up to this big movie projector from the 80's looking machine, and suck out my blood. Separating the stem cells from the blood, and returning my blood to me minus the stem cells. In order to get the most blood flow we need to super-size my port. So I need to upgrade to what feels like the water supply line to your toilet (look on the left side of your toilet the next time you are in the area). It feels like I have a 1/2 white toilet water supply line sticking out of my neck region. Now the doctors and staff at the hospital know that this larger line is uncomfortable compared to the smaller line that I currently have, so they only leave this larger line in as long as nessary. They will continue this collection process for at least 2 days. If I produce 4 million stem cells or more they will stop the collection proecess. For a stem cell transplant you need about 4 million stem cells. I current have about 20 million stem cells in a large beer cooler in the basement of the hospital that we could use for transplant # 3. But why dip into the savings account if you can make the money with a few days of hard work.
After the stem cell collection or harvesting I will be given the option of taking a little time off treatment. I am going to ask my oncologist in Little Rock to let me go straight through treatment. Which shouldn't be a problem, I prefer to move forward to the transplant phase. Before I can have my transplant, I have to go another boxing match with the red devil and his nasty sister's. But I will leave those details for next week. No need to rush into chemotherapy.
I am happy to report that I haven't had to experience the large loss in weight that I had with some of the other chemo cycles of years past. My raw mouth and gums are alomst fully recovered, which is normal for undergoing such a high-dose chemo. Where else can a guy spend his afternoons, reading, watching tv, and sleeping. Most of the time most of us would think that someone who spends theirs days and weeks carring on in that matter needs to go and get a job, or is lazy. I can even suck my thumb in the process and no one turns a head in disbelief.
So until next week start getting all of your financail records ready for your favorite tax person.
january 25, 2013
ANOTHER SLOW WEEK IN LITTLE ROCK
I just read this in a book last night, and I thought it was a great piece of work: Start by doing what's necessary, then what's possible, and suddenly you are doing the impossible. Made sense to me. Written by St. Francis of Assisi
Last week as I was finishing up the update for all you loyal readers, we had a good deal going on. Since they have so many people that travel from all over the country, and world for that matter. There are only a few things that you can't get accomplished at UAMS on the weekends. Which works out awesome from the patients standpoint. It not only keeps the patient busy, rather than sitting around an apartment or hotel all weekend. It also gets a patient through a very long treatment process much faster.
So as last week was coming to an end, I was busy getting suited up with a port the size of the Lincoln tunnel. Unfortunately for me, Molly was on duty at the hospital, but I didn't draw her number. So the exchange of the port went smooth, but it just wasn't the same. After a myeloma patient has had the pleasure of spending as much insurance money as I have had, it tends to have a few nasty side effects. One of the possible nasty side effects is the permanent damage to a patients ability to produce large quantities stem cells in the future, if need be. So in order to get my body to play a long and produce millions of stem cells we had to use an extremely expensive drug that has more side effects than those you see and hear on a tv commercials. It wasn't much over 10 minutes after they gave me the shot in my stomach of this "special drug" that I was shitting like a goose. Racing against time and other myeloma patients for the head. Lucky for me, I am a little younger and more agile than my competition that evening. The age of the average myeloma patient is 57. Otherwise things would have gotten a little messy. After I got back in the lazy boy style chair they have for the myeloma patients. I knew not to fart, cause life is full of unexpected discharges (prior experience will teach you this the hard way in cancer treatment), if you know what I mean. Then the stomach cramps, and nausea starts. So that particular drug may be useful on the war on terror, for getting suspects to give up all the information, and then some.
The next morning bright and early we are over at the collection center of the hospital. The first day they ran me on the movie projector machine from the 80's for 4 hours. Lucky for me the running on the machine for 4 hours consist of me laying in a bed, resting, sleeping, watching tv, and reading books. But you really can't go anywhere because you are plugged into this machine. A patient needs to remember to brown bag their lunches or have someone running around the hospital getting food. Everyday there after they ran me for 3 hours. On day 1 we got 900,000 cells which is pretty poor, but that is from all my prior run ends with the Christmas kool-aid. Also during the collection process I had to receive all kinds of blood, platelets, and other goodies. My body is starting to match my gray hair from all this cancer treatment. Kind of like your car hitting the 100,000 mile marker. So if you don't currently donate blood and platelets, please start and encourage others to do so as well, you never know who you may be helping out. Most of my platelets smelled like cheese, this is because they came from the Wisconsin area of the country.We where able to finish the 4 day marathon strong, for the amount of prior treatment I have had. Finishing the 4 day race just over 5 million stem cells. Which means I don't have to dip into the savings account of stem cells for my upcoming stem cell transplant.
So after the 4 day workout sessions, I wanted the Lincoln tunnel closed down. This time however I was reunited with Molly "Hatchet" and things where a walk in the park for the change over. So as the rock singer Meatloaf sang in the 80's, 2 out of 3 ain't bad. Since I was lucky enough to have Molly working on me, and thanks again for not mentioning to her the "Hatchet" part of our conversation. In the future I am going to have to require a permanent under the skin port due to my veins getting hard, so this time I left the procedure with Molly's work number. All that is left now is for me so visit with the oncologist, explain to her the benefits of me moving forward with my treatment, and I could be done with all this treatment in about 3 weeks give or take.
So give me a show of hands for those of you that have seen the opening act in the Matt Damon movie " Rounders". As I thought, mostly just the guys are raising their hands. The opening scene of the movie rounders has Matt Damon sneaking out of his apartment that he shares with his girlfriend in Chicago. Matt is heading out to play some high stakes Texas Hold-em poker. Matt walks into this private gambling hall with 30 large ($30,000 or 3 stakes of high society as he puts it in the movie). Matt is making a run for it, or trying to make it big and head to Vegas to play in the World Series of poker. So as the night goes on Matt is kicking butt in poker, and it comes down to one guy and Matt goes all in with his wager. As Matt is watching this hand unfold he is dreaming about the Mirage casino in Vegas, and all the good times that are around the corner.
So this past Wednesday I am sitting at the oncologist office, I am the next patient to see the oncologist. I am sitting in the chair next to my mother. I am playing on the computer, ipod, and thinking about undergoing my next round of chemo. Mom is doing whatever it is that mother's do when they are sitting in the cancer doctors office and the visit isn't for them. This next round of chemo isn't as tough, so I call it drive-thru vodka. After I go thru the 4 days of mother's milk chemo, I get my "liquid gold" as my sister and mom refer to it (stem cells or stem cell transplant). Then it's 2 weeks of recovery and I am off to fun in the sun Florida. So I have to endure is rookie chemo then tiptoe through the tulips with transplant # 3, and off I go to Florida. I am picking out the bars and restaurants at this point. Figuring out which friend and family member would enjoy this and that.
As with Matt Damon all that came crashing down as the last card was flipped over and the doctor turns the computer monitor around and show how high my cancer makers still are. I almost fell out of the chair to say the least. Not from the high cancer makers, but from the extended treatment messing up my travel plans. In the past, I have been so fortunate to just come to Little Rock, jump through the flaming hoops of treatment, and move on with life. Not this time my friend, which is common in the cancer treatment world. If we try to move forward with the transplant and insert the stem cells into my body with my cancer levels being this high. It would be like throwing babies in with the lions in the Roman coliseum back in the day. The cancer cells would just turn the healthy stem cells over to the dark-side of the force, and under Dark Vader's control.
So what we have to do is get me cancer levels down, obviously. Which is totally doable, it just takes my time and the insurance companies money, and no month in the sun in March. So this morning, Friday January 25, I am undergoing another bone barrow biopsy to get some makers. Then it's off to the party room at Infusion 4 to start the New Orleans Hurricane red punch drink. Also know as the red devil and his 3 wicked sister's. Or just RD (Red Devil) when you know your nemesis as well as I do.
So no exciting party plans for me this weekend. However, next weekend is the Super Bowl, as a few of you may be a wear of. This will be my second time watching the Super Bowl in Little Rock, and depending on how I am feeling on Super Bowl Sunday. I will be able to eat as much as I want and then some, to try and put on some weight, and maybe a few adult beverages.
After the 4 days of chemo, it will take about 2 weeks for my body to recover from the chemo. Then we will check and see what my cancer markers are at that point. If they are low or almost in remission, I will take a week or so off treatment. Then head back to Little Rock for a stem cell transplant. If my cancer makers are still too high, we will go another 4 day boxing round with RD.
So to put the situation in the simplistic Jeff Bonin terms. My cancer cells are acting like white trash renters, and they don't want to move out of my body, and they are destroying the place. So the medical team at UAMS is in contract negations with Johnny Cochran and his legal time to evict them. If they don't listen to Johnny's first legal motion, then we will continue with another motion. I am planning on this taking 2 cycles of chemo to evict the cancer.
So stay tuned........ don't touch that dial! Jeff
I just read this in a book last night, and I thought it was a great piece of work: Start by doing what's necessary, then what's possible, and suddenly you are doing the impossible. Made sense to me. Written by St. Francis of Assisi
Last week as I was finishing up the update for all you loyal readers, we had a good deal going on. Since they have so many people that travel from all over the country, and world for that matter. There are only a few things that you can't get accomplished at UAMS on the weekends. Which works out awesome from the patients standpoint. It not only keeps the patient busy, rather than sitting around an apartment or hotel all weekend. It also gets a patient through a very long treatment process much faster.
So as last week was coming to an end, I was busy getting suited up with a port the size of the Lincoln tunnel. Unfortunately for me, Molly was on duty at the hospital, but I didn't draw her number. So the exchange of the port went smooth, but it just wasn't the same. After a myeloma patient has had the pleasure of spending as much insurance money as I have had, it tends to have a few nasty side effects. One of the possible nasty side effects is the permanent damage to a patients ability to produce large quantities stem cells in the future, if need be. So in order to get my body to play a long and produce millions of stem cells we had to use an extremely expensive drug that has more side effects than those you see and hear on a tv commercials. It wasn't much over 10 minutes after they gave me the shot in my stomach of this "special drug" that I was shitting like a goose. Racing against time and other myeloma patients for the head. Lucky for me, I am a little younger and more agile than my competition that evening. The age of the average myeloma patient is 57. Otherwise things would have gotten a little messy. After I got back in the lazy boy style chair they have for the myeloma patients. I knew not to fart, cause life is full of unexpected discharges (prior experience will teach you this the hard way in cancer treatment), if you know what I mean. Then the stomach cramps, and nausea starts. So that particular drug may be useful on the war on terror, for getting suspects to give up all the information, and then some.
The next morning bright and early we are over at the collection center of the hospital. The first day they ran me on the movie projector machine from the 80's for 4 hours. Lucky for me the running on the machine for 4 hours consist of me laying in a bed, resting, sleeping, watching tv, and reading books. But you really can't go anywhere because you are plugged into this machine. A patient needs to remember to brown bag their lunches or have someone running around the hospital getting food. Everyday there after they ran me for 3 hours. On day 1 we got 900,000 cells which is pretty poor, but that is from all my prior run ends with the Christmas kool-aid. Also during the collection process I had to receive all kinds of blood, platelets, and other goodies. My body is starting to match my gray hair from all this cancer treatment. Kind of like your car hitting the 100,000 mile marker. So if you don't currently donate blood and platelets, please start and encourage others to do so as well, you never know who you may be helping out. Most of my platelets smelled like cheese, this is because they came from the Wisconsin area of the country.We where able to finish the 4 day marathon strong, for the amount of prior treatment I have had. Finishing the 4 day race just over 5 million stem cells. Which means I don't have to dip into the savings account of stem cells for my upcoming stem cell transplant.
So after the 4 day workout sessions, I wanted the Lincoln tunnel closed down. This time however I was reunited with Molly "Hatchet" and things where a walk in the park for the change over. So as the rock singer Meatloaf sang in the 80's, 2 out of 3 ain't bad. Since I was lucky enough to have Molly working on me, and thanks again for not mentioning to her the "Hatchet" part of our conversation. In the future I am going to have to require a permanent under the skin port due to my veins getting hard, so this time I left the procedure with Molly's work number. All that is left now is for me so visit with the oncologist, explain to her the benefits of me moving forward with my treatment, and I could be done with all this treatment in about 3 weeks give or take.
So give me a show of hands for those of you that have seen the opening act in the Matt Damon movie " Rounders". As I thought, mostly just the guys are raising their hands. The opening scene of the movie rounders has Matt Damon sneaking out of his apartment that he shares with his girlfriend in Chicago. Matt is heading out to play some high stakes Texas Hold-em poker. Matt walks into this private gambling hall with 30 large ($30,000 or 3 stakes of high society as he puts it in the movie). Matt is making a run for it, or trying to make it big and head to Vegas to play in the World Series of poker. So as the night goes on Matt is kicking butt in poker, and it comes down to one guy and Matt goes all in with his wager. As Matt is watching this hand unfold he is dreaming about the Mirage casino in Vegas, and all the good times that are around the corner.
So this past Wednesday I am sitting at the oncologist office, I am the next patient to see the oncologist. I am sitting in the chair next to my mother. I am playing on the computer, ipod, and thinking about undergoing my next round of chemo. Mom is doing whatever it is that mother's do when they are sitting in the cancer doctors office and the visit isn't for them. This next round of chemo isn't as tough, so I call it drive-thru vodka. After I go thru the 4 days of mother's milk chemo, I get my "liquid gold" as my sister and mom refer to it (stem cells or stem cell transplant). Then it's 2 weeks of recovery and I am off to fun in the sun Florida. So I have to endure is rookie chemo then tiptoe through the tulips with transplant # 3, and off I go to Florida. I am picking out the bars and restaurants at this point. Figuring out which friend and family member would enjoy this and that.
As with Matt Damon all that came crashing down as the last card was flipped over and the doctor turns the computer monitor around and show how high my cancer makers still are. I almost fell out of the chair to say the least. Not from the high cancer makers, but from the extended treatment messing up my travel plans. In the past, I have been so fortunate to just come to Little Rock, jump through the flaming hoops of treatment, and move on with life. Not this time my friend, which is common in the cancer treatment world. If we try to move forward with the transplant and insert the stem cells into my body with my cancer levels being this high. It would be like throwing babies in with the lions in the Roman coliseum back in the day. The cancer cells would just turn the healthy stem cells over to the dark-side of the force, and under Dark Vader's control.
So what we have to do is get me cancer levels down, obviously. Which is totally doable, it just takes my time and the insurance companies money, and no month in the sun in March. So this morning, Friday January 25, I am undergoing another bone barrow biopsy to get some makers. Then it's off to the party room at Infusion 4 to start the New Orleans Hurricane red punch drink. Also know as the red devil and his 3 wicked sister's. Or just RD (Red Devil) when you know your nemesis as well as I do.
So no exciting party plans for me this weekend. However, next weekend is the Super Bowl, as a few of you may be a wear of. This will be my second time watching the Super Bowl in Little Rock, and depending on how I am feeling on Super Bowl Sunday. I will be able to eat as much as I want and then some, to try and put on some weight, and maybe a few adult beverages.
After the 4 days of chemo, it will take about 2 weeks for my body to recover from the chemo. Then we will check and see what my cancer markers are at that point. If they are low or almost in remission, I will take a week or so off treatment. Then head back to Little Rock for a stem cell transplant. If my cancer makers are still too high, we will go another 4 day boxing round with RD.
So to put the situation in the simplistic Jeff Bonin terms. My cancer cells are acting like white trash renters, and they don't want to move out of my body, and they are destroying the place. So the medical team at UAMS is in contract negations with Johnny Cochran and his legal time to evict them. If they don't listen to Johnny's first legal motion, then we will continue with another motion. I am planning on this taking 2 cycles of chemo to evict the cancer.
So stay tuned........ don't touch that dial! Jeff
february 10, 2013
GROUNDHOG DAY IN LITTLE ROCK
My staff and I have been to busy laying around doing absolutely nothing, just like the folks in Washington D.C., so that is why we are behind in our weekly email updates. With the 7 day a week treatment schedule that myself, and I believe most, if not all, the Myeloma patients enjoy. Everyday is kind of like the Bill Murray movie Groundhog Day, that I watched on television a few Saturday's ago, since it was Groundhog Day.
So the chemotherapy is very good at doing it's job, which is killing everything inside my body, good and bad. So it really drains any energy or drive out of a patient. So all a person really wants to do is lay around, nap, and eat a small meal from time to time. As I start to feel better each day, I am able to read and want to go out and see things, but usually at that point I have no immune system, and walking around in public next to someone that coughs or sneezes could give me all kinds of problems. So far I have been able to avoid catching a cold or infection. Which hasn't always been the case with all the treatments that I under went with my other stem cell transplants.
There really isn't too much information to share with you. The 4 rounds (days) with the red devil was a little easier this time around. So rather than feeling like throwing up all the time. I was just crappy and moody all the time. Since you kind of feel like you have a hangover all the time, due to the chemo and it's side effects. So some women would probably say I was acting like a normal male, or their husband's, a good deal of the time.
When I finally started treatment in Little Rock back on New Year's Day after we got the green light from the insurance company. My cancer levels (Myeloma Level) as at 8.0 and some change, which is extremely high. 3 years ago before I got to University Hospital in Cleveland, Ohio and got stabilized, my cancer numbers where at 12.0. Which caused my back and chest to collapsed. So you can see how fast the Myeloma cells can take over and kill a person without the proper treatment. After the first cycle of chemo that started on New Years Day, my Myeloma levels dropped to 5.0 and some change. I felt so much better and had some much more energy and less fatigue that I thought I was in remission due to how much better I felt, with the 3.0 drop. So look out world, as my levels continue to drop and I have more energy to be a mover and shaker again.
On a normal day I get to the office (hospital) at 7 sharp. During the week there are a good deal of people flocking to the world famous UAMS Myeloma center. So I get my treatment done as early as possible. Head back to the Family Home, get a bit to eat and back to bed. The type of days that some people dream of, not me, but some people.
So when a patient gets called back into the Infusion Center 4 for treatment. They start off the daily treatment by checking your weight, pulse, blood pressure and temperature. They can tell quit a bit just from that little bit of information. On my previous chemo cycles from years past I dropped almost 20 pounds. This time I have lost almost 10 pounds. I have been eating a lot a small meals and lot of ice cream to try and keep my weight up. No calorie counting on this cancer program, I bet that makes some of your jealous.
After the initial inspection they take me to one of the pod treatment areas. Most pods have a nurse that can take up to 4 patients at any given time. Trying to juggle 3 and 4 patients at a time is a very difficult chore, to put it VERY simply. But these nurses walk right through it like a walk in down Bourbon Street, bringing stories and joy to the patients. Of course I don't add any action and drama into the soup, not me. Due to high caliber staff that they attract at UAMS with all their years of experience and talent. In order for everyone to see exactly what is going on with my body they do a blood draw from my port that I have told you about in the past. Which sounds simple enough, but the port never wants to cooperate, so this becomes a team work approach. Some days one of the lines will flow like the Mississippi River, and the next day that same line is as dry as a soldier's mouth in Irag on a hot summer day. So I get to learn new tricks of the trade everyday as the nurses and I team up to get the blood out of my port, baby. I generally stand up and have to inhale and exhale. As I breath in and out you can see the blood squirting into the lab vials. Kind of cool to watch. Some days I fill up a few vials and some days it's almost a dozen vials, depending on what tests they are running. Then once and I while they will do a blood test that they don't want the blood coming out of a port. These days are nicknamed "bloody Monday's" since most cancer patients have bad veins from all the treatment. So it can get a little bloody before we strike oil. I enjoy picking on the nurses at this point,it's a great way to make a little extra money by gambling on how many strikes before they hit the oil pipeline. Aren't you glad you don't have to deal with me as a patient?
After they take advantage of me and take my fluids, it's time to watch television in these ultimate lazy boy chairs (man chairs), sleep, read, or play on the computer. If I am feeling good, I will walk around and chat with the staff or the other Myeloma patients. Due to what day of the week or how busy the lab is, it can take up to an hour to get the blood results, which is totally fine. Because this is kind of the highlight of the day, before heading back to bed at the Family Home. Once the staff at UAMS has my blood results they can begin to give me blood products to try and help my body out from all the damage from the chemo and make me feel a little better. A few weeks back I got some platelets from the Washington D.C area. After I got those platelets, I wanted to lay around even more, full of hot air, and wanted to spend money that I didn't even have. I wonder what caused those strange feelings in me?????
I have to get a premed to calm my body down before receiving platelets, since they are adding a foreign substance into my body, my body freaks out a little. So they give me some water downed Benadrill, and out go the light for Jeff, off to sleepy land, good night sleepy head as my niece and nephew say. They wake me up 20 minutes later, we head back to the Family Home and I end up sleeping all day from the Benadrill. So my mom gets a break from crappy Jeff on the platelets days. In previous treatments in years past, the Benadrill just made me a little drowsy, my body has really gone through some changes from all these extra miles on my odometer. I also get pints of blood, but I don't need the premed for the blood. I usually leave the Infusion Center with a baby bottle as well. They call it an infuser, but it looks just like a baby bottle with a clear balloon inside the clear baby bottle. The clear balloon is filled with Magnesium or some other fluid that my body needs. The top of the baby bottle has a line or cord on it that connects to my port. The pressure in the bottle and and balloon gives me a consist push of the fluid until it's all gone. Usually 2 to 4 hours. Very simple, but somebody had to make a fortune off the simple idea. This infuser allows me to head home rather than sit at the Infusion Center for 2 to 4 hours. I am not trying to get political on this email, but the government plans don't cover the infuser bottles. So people on those government plans have to sit in the Infusion Center for the 2 to 4 hours. Which cost a good deal more than the baby bottles. I have been extremely blessed with awesome health care insurance. Don't every get caught with your pants down in that department, even the government plans are much better than no plans at all. You owe it to yourself and your family to look into these matters as a grown adult. If a person can afford cable television, cell phones, lottery tickets, and alcohol. They can afford health care.
At the writing of this update (Sunday February 10, 2013, 7:13pm, ct) I feel great and I will be seeing my oncologist in Little Rock on Monday afternoon or Wednesday. I will find out tomorrow when I have my appointment with Dr. Sara Waheed. When my mom and I go to see the doc, we will know what my Myeloma levels are and what our next step is. Which is either moving into the transplant phase, or another round of high-dose chemo, then transplant phase. I am okay with either option. Whatever it takes to get the job done. I am glad that all this treatment isn't messing up my summer months of fishing on the high seas of Lake Erie. That would really piss my off to know degree.
This coming Thursday evening UAMS is hosting the monthly question and answer session that I told you about a few emails ago. This month they have Dr. Bart Baroglie and Dr. Sara Waheed catching the pitches as we throw our fast ball pitches at them. So I will get their early for the free dinner, lol. most likely the session will be extremely crowed because of Dr. Baroglie speaking at the session.
So like I mentioned at the beginning of this email. I don't really have any funny stories to report on this update. Since I am feeling so much better, Mom and I are planning on heading down to the Clinton Center to visit with all my friends that treat me like family at the center. I am still planning on going straight throught all the treamtent rather than driving 14 hours home for 12 days and driving 14 hours back to Little Rock. I just have to be sure that Dr. Waheed is okay with this game plan, which I think she will be.
I will send out another update later this week when I have more info from the doc. In the meantime, behave yourselves!!!! Jeff
My staff and I have been to busy laying around doing absolutely nothing, just like the folks in Washington D.C., so that is why we are behind in our weekly email updates. With the 7 day a week treatment schedule that myself, and I believe most, if not all, the Myeloma patients enjoy. Everyday is kind of like the Bill Murray movie Groundhog Day, that I watched on television a few Saturday's ago, since it was Groundhog Day.
So the chemotherapy is very good at doing it's job, which is killing everything inside my body, good and bad. So it really drains any energy or drive out of a patient. So all a person really wants to do is lay around, nap, and eat a small meal from time to time. As I start to feel better each day, I am able to read and want to go out and see things, but usually at that point I have no immune system, and walking around in public next to someone that coughs or sneezes could give me all kinds of problems. So far I have been able to avoid catching a cold or infection. Which hasn't always been the case with all the treatments that I under went with my other stem cell transplants.
There really isn't too much information to share with you. The 4 rounds (days) with the red devil was a little easier this time around. So rather than feeling like throwing up all the time. I was just crappy and moody all the time. Since you kind of feel like you have a hangover all the time, due to the chemo and it's side effects. So some women would probably say I was acting like a normal male, or their husband's, a good deal of the time.
When I finally started treatment in Little Rock back on New Year's Day after we got the green light from the insurance company. My cancer levels (Myeloma Level) as at 8.0 and some change, which is extremely high. 3 years ago before I got to University Hospital in Cleveland, Ohio and got stabilized, my cancer numbers where at 12.0. Which caused my back and chest to collapsed. So you can see how fast the Myeloma cells can take over and kill a person without the proper treatment. After the first cycle of chemo that started on New Years Day, my Myeloma levels dropped to 5.0 and some change. I felt so much better and had some much more energy and less fatigue that I thought I was in remission due to how much better I felt, with the 3.0 drop. So look out world, as my levels continue to drop and I have more energy to be a mover and shaker again.
On a normal day I get to the office (hospital) at 7 sharp. During the week there are a good deal of people flocking to the world famous UAMS Myeloma center. So I get my treatment done as early as possible. Head back to the Family Home, get a bit to eat and back to bed. The type of days that some people dream of, not me, but some people.
So when a patient gets called back into the Infusion Center 4 for treatment. They start off the daily treatment by checking your weight, pulse, blood pressure and temperature. They can tell quit a bit just from that little bit of information. On my previous chemo cycles from years past I dropped almost 20 pounds. This time I have lost almost 10 pounds. I have been eating a lot a small meals and lot of ice cream to try and keep my weight up. No calorie counting on this cancer program, I bet that makes some of your jealous.
After the initial inspection they take me to one of the pod treatment areas. Most pods have a nurse that can take up to 4 patients at any given time. Trying to juggle 3 and 4 patients at a time is a very difficult chore, to put it VERY simply. But these nurses walk right through it like a walk in down Bourbon Street, bringing stories and joy to the patients. Of course I don't add any action and drama into the soup, not me. Due to high caliber staff that they attract at UAMS with all their years of experience and talent. In order for everyone to see exactly what is going on with my body they do a blood draw from my port that I have told you about in the past. Which sounds simple enough, but the port never wants to cooperate, so this becomes a team work approach. Some days one of the lines will flow like the Mississippi River, and the next day that same line is as dry as a soldier's mouth in Irag on a hot summer day. So I get to learn new tricks of the trade everyday as the nurses and I team up to get the blood out of my port, baby. I generally stand up and have to inhale and exhale. As I breath in and out you can see the blood squirting into the lab vials. Kind of cool to watch. Some days I fill up a few vials and some days it's almost a dozen vials, depending on what tests they are running. Then once and I while they will do a blood test that they don't want the blood coming out of a port. These days are nicknamed "bloody Monday's" since most cancer patients have bad veins from all the treatment. So it can get a little bloody before we strike oil. I enjoy picking on the nurses at this point,it's a great way to make a little extra money by gambling on how many strikes before they hit the oil pipeline. Aren't you glad you don't have to deal with me as a patient?
After they take advantage of me and take my fluids, it's time to watch television in these ultimate lazy boy chairs (man chairs), sleep, read, or play on the computer. If I am feeling good, I will walk around and chat with the staff or the other Myeloma patients. Due to what day of the week or how busy the lab is, it can take up to an hour to get the blood results, which is totally fine. Because this is kind of the highlight of the day, before heading back to bed at the Family Home. Once the staff at UAMS has my blood results they can begin to give me blood products to try and help my body out from all the damage from the chemo and make me feel a little better. A few weeks back I got some platelets from the Washington D.C area. After I got those platelets, I wanted to lay around even more, full of hot air, and wanted to spend money that I didn't even have. I wonder what caused those strange feelings in me?????
I have to get a premed to calm my body down before receiving platelets, since they are adding a foreign substance into my body, my body freaks out a little. So they give me some water downed Benadrill, and out go the light for Jeff, off to sleepy land, good night sleepy head as my niece and nephew say. They wake me up 20 minutes later, we head back to the Family Home and I end up sleeping all day from the Benadrill. So my mom gets a break from crappy Jeff on the platelets days. In previous treatments in years past, the Benadrill just made me a little drowsy, my body has really gone through some changes from all these extra miles on my odometer. I also get pints of blood, but I don't need the premed for the blood. I usually leave the Infusion Center with a baby bottle as well. They call it an infuser, but it looks just like a baby bottle with a clear balloon inside the clear baby bottle. The clear balloon is filled with Magnesium or some other fluid that my body needs. The top of the baby bottle has a line or cord on it that connects to my port. The pressure in the bottle and and balloon gives me a consist push of the fluid until it's all gone. Usually 2 to 4 hours. Very simple, but somebody had to make a fortune off the simple idea. This infuser allows me to head home rather than sit at the Infusion Center for 2 to 4 hours. I am not trying to get political on this email, but the government plans don't cover the infuser bottles. So people on those government plans have to sit in the Infusion Center for the 2 to 4 hours. Which cost a good deal more than the baby bottles. I have been extremely blessed with awesome health care insurance. Don't every get caught with your pants down in that department, even the government plans are much better than no plans at all. You owe it to yourself and your family to look into these matters as a grown adult. If a person can afford cable television, cell phones, lottery tickets, and alcohol. They can afford health care.
At the writing of this update (Sunday February 10, 2013, 7:13pm, ct) I feel great and I will be seeing my oncologist in Little Rock on Monday afternoon or Wednesday. I will find out tomorrow when I have my appointment with Dr. Sara Waheed. When my mom and I go to see the doc, we will know what my Myeloma levels are and what our next step is. Which is either moving into the transplant phase, or another round of high-dose chemo, then transplant phase. I am okay with either option. Whatever it takes to get the job done. I am glad that all this treatment isn't messing up my summer months of fishing on the high seas of Lake Erie. That would really piss my off to know degree.
This coming Thursday evening UAMS is hosting the monthly question and answer session that I told you about a few emails ago. This month they have Dr. Bart Baroglie and Dr. Sara Waheed catching the pitches as we throw our fast ball pitches at them. So I will get their early for the free dinner, lol. most likely the session will be extremely crowed because of Dr. Baroglie speaking at the session.
So like I mentioned at the beginning of this email. I don't really have any funny stories to report on this update. Since I am feeling so much better, Mom and I are planning on heading down to the Clinton Center to visit with all my friends that treat me like family at the center. I am still planning on going straight throught all the treamtent rather than driving 14 hours home for 12 days and driving 14 hours back to Little Rock. I just have to be sure that Dr. Waheed is okay with this game plan, which I think she will be.
I will send out another update later this week when I have more info from the doc. In the meantime, behave yourselves!!!! Jeff
february 20, 2013
DOCTOR, DOCTOR, GIVE ME THE NEWS....
The song title in the subject line was an old popular song from the 80's. Don't let the long delay in the email updates make you worry. Between the chemo-brain, writers block (just kidding), and the lack of anything exciting to share with you. I have just been taking my time trying to come up with anything interesting to share with you folks. If any bad news came down the pipe, or if I needed any assistance in any way, I would not hesitate to contact any of you and ask for your help. So once again, thanks for your support and a shoulder to lean on.
So I been doing a good job at avoiding the cold and flu as of lately, which has been a big deal around the country and at UAMS. Let alone at any cancer ward where you have people that have no immune systems. Lately, I have been showing signs of a mild cold with a slight sore throat and a few other symptoms, last week my CRP had another spike. The CRP is just a blood marker they use to check for infections, but they were able to get that under control for me. If a cancer patient gets a full blow cold, it can really delay their treatment, or worse yet put, them in the hospital.
On last Thursday evening my mother and I attended the monthly question and answer session at UAMS. They had Dr. Bart Barlogie and Dr. Sara Waheed entertaining us this month. One of the few down falls of the Q&A sessions is all the information that is given out to the patients. So a patient hears how well so and so is doing with this new drug, and decides that they want to be on that new drug because it worked so well on someone else. Kind of like all those drug comericals that you see on television, then you walk into your doctors office and tell the doctor that you want this drug, rather than letting your doctor evaluation your personal situation.
As the Q&A session was wrapping up, Dr. Waheed asked one of the people in the "live studio audience" if he had anything to share with the group. Most of us in attendance had no idea what this gentleman had to share with us. This patient was from New York City, for the sake of this email let's call him John. He was diagnosed more than 20 years ago, with Multiple Myeloma, so that made John the longest survivor of MM in the room. When he was diagnosed with Multiple Myeloma in New York, he said the hospital in New York where John was admitted was 4 blocks long and 4 blocks wide. From a recommendation from his oncologist in NY, John headed to UAMS as soon as possible which happened to be on Labor Day weekend, back when I was just finishing up high school. Back in the early 1990's, you know, the good old days. When he got to Little Rock on a Holiday weekend, he couldn't find an open restaurant to eat in. Not even the restaurant at the Hilton Hotel where John and his wife where staying was open. He finally ran into another MM patient from Florida, and they managed to find some apples to enjoy.
The next morning John and his wife took a cab to UAMS Myeloma Center to start the treatment and testing. The cab pulls up in front of a brick building the size of a average pole barn. He asked the cabby what this is? Where is the Myeloma clinic? The cabby told John this is it, you are looking at the Myeloma clinic. The John and his wife where expecting so much more from all the positive news about the UAMS Myeloma Center, expecting something more than this small building after moving his treatment from NY. He walks into the small building and everything is separated by rooms or patient areas with ropes and bed sheet. To use his words John said it looked like a "brothel". As John is taking all of this in, Dr. Barlogie walks in and introduces himself. John said that it was a good thing that Dr. Barlogie wore a shirt, tie, and a white jacket back in those days. Because if Dr. Barlogie was wearing his wardrobe of today, he would have walked out of the clinic right there and then. Dr. Barlogie rides a BMW crouch rocket to work everyday, and wears a very relaxed wardrobe of motorcycle riding cloths, and different kinds of John Lennon Beattle reading glasses.
After John went through the heavy duty chemo or Christmas kool-aid or hurricane drink as I like to refer to it. Dr. Barlogie and his staff approached John and his wife and asked John to be the first patient to undergo the stem cell transplant as an outpatient, rather than living and hanging out in the hospital for up to a month. John and his wife didn't know how to respond. They were quiet scared as anyone would be, but Dr. Barlogie explained the benefits of avoiding all the germs in a hospital and that John would be forced to get out of bed and visit the hospital everyday. So the outpatient would force John to be much more active with positive results. Rather than laying in a hospital bed all day complaining and the medical staff coming to him. So John and his wife nervously took Dr. Barlogie's suggestion. So John and his wife had the refrigerator in the hotel filled with all kinds of antibiotics in case John got a fever in the middle of the night. John said they also had to microwave all there food and eat certain kinds of pre-made foods so that everything was fully cooked or over cooked, so he didn't catch anything from under cooked food or a germ off a fruit or vegetable. John under went a tandem stem cell transplant like I did 2 years ago, and everything went great. So John was setting the stage for most of the treatment that I get to just walk into and enjoy today!
After being in remission for 10 years from the tandem stem cell transplants, John got the bad news that the MM had returned. John returned to UAMS and underwent a 3rd stem cell transplant like I am getting ready to undergo. John only got 6 months of remission from the 3rd stem cell transplant. UAMS finally got John's Myeloma under control with other methods till about 3 years ago, when John's Myeloma levels started to take off again. So John is explaining to all of us the day he is sitting in Dr. Barolgie's office about 3 years ago, using Dr. Barolgie's German accent and motions. Most of us that have met and dealt with Dr. Barolgie are in tears from laughing at this point, from listening to John's imitations of Dr. Barlogie. Dr. Barlogie approached John with another pioneering method at UAMS, the "killer cell". Once agin John was the first patient at UAMS to undergo this treatment. This is where they take your stem cells and send your stem cells out to "Navy Seal" and "Massod" school. After all the "special forces" training that the stem cells go through, they come back and lay out IAD's and claymore mines and kick the crap out of the Myeloma cells with the guerrilla tactics that have picked up from their "special forces" training. It has taken about 3 years, but John's Myeloma markers continue to decline!
So last Wednesday my mom and I sat down with Dr. Waheed. The UAMS Hurricane mix, curtisty of the UAMS Pharmacy (this is a red alcohol drink that New Orleans is famous for) has been doing it's job and my Myeloma makers are down into the high 2 range. So rather than beating me and my body up with another high-dose round of the Hurricane mix, we are going to try a new drug that has been on the market for a few years or less, that they have never tried on old gray haired Jeff, when Jeff has hair. The name of this new drug is Carfilzomib, or car-fil-zo-mib. They staff and patients call this drug "car full of zombie's". It's a lot easier to say and remember. I will take the "car full of zombies" on Monday and Tuesday for 2 weeks. So I started the cycle this past Monday morning. This new drug is very easy on the patient, it is very similar to the current weekly drug treatments that I undergo every Monday morning in Cleveland, OH to keep me in remission. I also take 20mg of Dexamethasone, or steroids on the days of treatment. The steroids have there own side effects, but whatever it takes to stay in remission.
So next week I have the treatment with the "zombies" on Monday and Tuesday, fallowed by an MRI at 8:30p.m. Then another bone marrow biopsy under sedation on Wednesday with the "special diet", that I am such a big fan of. So the staff and I at the operating room are becoming quit close these days, a few more biopsy's and I will know when their birthday's. I even have my own bed in the operating room these days. After all the drugs and testing next week, I will meet with Dr. Waheed on Thursday and see how things are coming along. I may undergo my 3rd stem cell transplant the fallowing week. Or Dr. Waheed my send me home and continue with the "zombies" and hold the trump card (transplant) in my medical file and see what happens. As long as Jeff doesn't have to cut into my fishing on the high sea's of Lake Erie this summer, all will be okay in my book. I have a reputation to up hold as the most time on the lake than any one else in the marina, to up hold, lots of pressure and dedication on my end. But you won't hear me complaining.... How am I supposed to catch all this fish for fish fry's and fish to share with all of you if I am hanging out in Little Rock, AR?
So that is about the extent of anything that I have to share with you today. So quit spending all your time reading about my drama and get back into your life and enjoy the "present time"!
Jeff
The song title in the subject line was an old popular song from the 80's. Don't let the long delay in the email updates make you worry. Between the chemo-brain, writers block (just kidding), and the lack of anything exciting to share with you. I have just been taking my time trying to come up with anything interesting to share with you folks. If any bad news came down the pipe, or if I needed any assistance in any way, I would not hesitate to contact any of you and ask for your help. So once again, thanks for your support and a shoulder to lean on.
So I been doing a good job at avoiding the cold and flu as of lately, which has been a big deal around the country and at UAMS. Let alone at any cancer ward where you have people that have no immune systems. Lately, I have been showing signs of a mild cold with a slight sore throat and a few other symptoms, last week my CRP had another spike. The CRP is just a blood marker they use to check for infections, but they were able to get that under control for me. If a cancer patient gets a full blow cold, it can really delay their treatment, or worse yet put, them in the hospital.
On last Thursday evening my mother and I attended the monthly question and answer session at UAMS. They had Dr. Bart Barlogie and Dr. Sara Waheed entertaining us this month. One of the few down falls of the Q&A sessions is all the information that is given out to the patients. So a patient hears how well so and so is doing with this new drug, and decides that they want to be on that new drug because it worked so well on someone else. Kind of like all those drug comericals that you see on television, then you walk into your doctors office and tell the doctor that you want this drug, rather than letting your doctor evaluation your personal situation.
As the Q&A session was wrapping up, Dr. Waheed asked one of the people in the "live studio audience" if he had anything to share with the group. Most of us in attendance had no idea what this gentleman had to share with us. This patient was from New York City, for the sake of this email let's call him John. He was diagnosed more than 20 years ago, with Multiple Myeloma, so that made John the longest survivor of MM in the room. When he was diagnosed with Multiple Myeloma in New York, he said the hospital in New York where John was admitted was 4 blocks long and 4 blocks wide. From a recommendation from his oncologist in NY, John headed to UAMS as soon as possible which happened to be on Labor Day weekend, back when I was just finishing up high school. Back in the early 1990's, you know, the good old days. When he got to Little Rock on a Holiday weekend, he couldn't find an open restaurant to eat in. Not even the restaurant at the Hilton Hotel where John and his wife where staying was open. He finally ran into another MM patient from Florida, and they managed to find some apples to enjoy.
The next morning John and his wife took a cab to UAMS Myeloma Center to start the treatment and testing. The cab pulls up in front of a brick building the size of a average pole barn. He asked the cabby what this is? Where is the Myeloma clinic? The cabby told John this is it, you are looking at the Myeloma clinic. The John and his wife where expecting so much more from all the positive news about the UAMS Myeloma Center, expecting something more than this small building after moving his treatment from NY. He walks into the small building and everything is separated by rooms or patient areas with ropes and bed sheet. To use his words John said it looked like a "brothel". As John is taking all of this in, Dr. Barlogie walks in and introduces himself. John said that it was a good thing that Dr. Barlogie wore a shirt, tie, and a white jacket back in those days. Because if Dr. Barlogie was wearing his wardrobe of today, he would have walked out of the clinic right there and then. Dr. Barlogie rides a BMW crouch rocket to work everyday, and wears a very relaxed wardrobe of motorcycle riding cloths, and different kinds of John Lennon Beattle reading glasses.
After John went through the heavy duty chemo or Christmas kool-aid or hurricane drink as I like to refer to it. Dr. Barlogie and his staff approached John and his wife and asked John to be the first patient to undergo the stem cell transplant as an outpatient, rather than living and hanging out in the hospital for up to a month. John and his wife didn't know how to respond. They were quiet scared as anyone would be, but Dr. Barlogie explained the benefits of avoiding all the germs in a hospital and that John would be forced to get out of bed and visit the hospital everyday. So the outpatient would force John to be much more active with positive results. Rather than laying in a hospital bed all day complaining and the medical staff coming to him. So John and his wife nervously took Dr. Barlogie's suggestion. So John and his wife had the refrigerator in the hotel filled with all kinds of antibiotics in case John got a fever in the middle of the night. John said they also had to microwave all there food and eat certain kinds of pre-made foods so that everything was fully cooked or over cooked, so he didn't catch anything from under cooked food or a germ off a fruit or vegetable. John under went a tandem stem cell transplant like I did 2 years ago, and everything went great. So John was setting the stage for most of the treatment that I get to just walk into and enjoy today!
After being in remission for 10 years from the tandem stem cell transplants, John got the bad news that the MM had returned. John returned to UAMS and underwent a 3rd stem cell transplant like I am getting ready to undergo. John only got 6 months of remission from the 3rd stem cell transplant. UAMS finally got John's Myeloma under control with other methods till about 3 years ago, when John's Myeloma levels started to take off again. So John is explaining to all of us the day he is sitting in Dr. Barolgie's office about 3 years ago, using Dr. Barolgie's German accent and motions. Most of us that have met and dealt with Dr. Barolgie are in tears from laughing at this point, from listening to John's imitations of Dr. Barlogie. Dr. Barlogie approached John with another pioneering method at UAMS, the "killer cell". Once agin John was the first patient at UAMS to undergo this treatment. This is where they take your stem cells and send your stem cells out to "Navy Seal" and "Massod" school. After all the "special forces" training that the stem cells go through, they come back and lay out IAD's and claymore mines and kick the crap out of the Myeloma cells with the guerrilla tactics that have picked up from their "special forces" training. It has taken about 3 years, but John's Myeloma markers continue to decline!
So last Wednesday my mom and I sat down with Dr. Waheed. The UAMS Hurricane mix, curtisty of the UAMS Pharmacy (this is a red alcohol drink that New Orleans is famous for) has been doing it's job and my Myeloma makers are down into the high 2 range. So rather than beating me and my body up with another high-dose round of the Hurricane mix, we are going to try a new drug that has been on the market for a few years or less, that they have never tried on old gray haired Jeff, when Jeff has hair. The name of this new drug is Carfilzomib, or car-fil-zo-mib. They staff and patients call this drug "car full of zombie's". It's a lot easier to say and remember. I will take the "car full of zombies" on Monday and Tuesday for 2 weeks. So I started the cycle this past Monday morning. This new drug is very easy on the patient, it is very similar to the current weekly drug treatments that I undergo every Monday morning in Cleveland, OH to keep me in remission. I also take 20mg of Dexamethasone, or steroids on the days of treatment. The steroids have there own side effects, but whatever it takes to stay in remission.
So next week I have the treatment with the "zombies" on Monday and Tuesday, fallowed by an MRI at 8:30p.m. Then another bone marrow biopsy under sedation on Wednesday with the "special diet", that I am such a big fan of. So the staff and I at the operating room are becoming quit close these days, a few more biopsy's and I will know when their birthday's. I even have my own bed in the operating room these days. After all the drugs and testing next week, I will meet with Dr. Waheed on Thursday and see how things are coming along. I may undergo my 3rd stem cell transplant the fallowing week. Or Dr. Waheed my send me home and continue with the "zombies" and hold the trump card (transplant) in my medical file and see what happens. As long as Jeff doesn't have to cut into my fishing on the high sea's of Lake Erie this summer, all will be okay in my book. I have a reputation to up hold as the most time on the lake than any one else in the marina, to up hold, lots of pressure and dedication on my end. But you won't hear me complaining.... How am I supposed to catch all this fish for fish fry's and fish to share with all of you if I am hanging out in Little Rock, AR?
So that is about the extent of anything that I have to share with you today. So quit spending all your time reading about my drama and get back into your life and enjoy the "present time"!
Jeff
march 3, 2013
MARCH MADNESS
I haven't heard any bad news from any of you, which is awesome. But feel free to send honest replies about what is going on in your life and with your kids. If you are living the "Little Life on a Prairie", and nothing bad is going on in your life. I think you are full of it.
Last week was rather busy on our end here in Little Rock. I was busy playing with the steroids and the "zombies" or "car-full of zombies" (Carfilzomib), on Monday and Tuesday mornings. The steroids take until Thursday and Friday to get out of my system and for me to not act so hyper. The "zombies" are very easy to hangout with.
The cancer patient is like the quarterback on the football field getting all the fame and glory. While the rest of the team (family) are the people and individuals that deserve all the credit. My mother is no exception to this rule. Be sure to thank her by email, phone, or card. Also, please reach out to my sister and her family, aunt's and uncle's, and last but not least, all my friends and all of you. I would miss every single one of you!
Tuesday evening at 8:30p.m. I had a MRI to check out some growth in my pelvis area. It was one of the quickest MRI's that I have ever experienced. Some MRI's can last over an hour. This MRI was over in 20 minutes, just like a normal guy, all over with in 20 minutes.
After my early dinner on Tuesday, I was on the "special diet". When you are on steroids you eat often and early. So by 3 and 4:00 a.m. on Wednesday morning I was rather hungry, but I had a big day a head of me with in and out surgery, on Wednesday. Wednesday morning I was at the Radiology surgery center at 7:00 a.m. to get ready for my new under the skin internal port. I have been avoiding receiving this port for over a year now. But the veins in my arms are really starting to look like a heroin addict from all the treatment. So this new port will allow the medical team back in Westlake, OH that puts up with me every Monday morning, to access me so much easierand give me my weekly dose of posoin. So no more of Jeff taking money from the nurses in Westlake, betting on how many times they have to poke my arm before they strike gold.
So I was laying on the meat table (surgery table) all prepped up, ready to go. I was blessed to have a doctor with the first name of Jay working on me. Molly hachet was in the area. But due to the type of work I was having done on Wednesday morning, Jay was the better person for the job. Jay and I go back to when I was just a rookie in the cancer world. So here I am all ready to go on the meat table (lucky for me there was not tag on my toe), waiting on Jay, and Jay is no where to be found. He must have stepped out for a coffee break or to talk to his investment broker. So a younger doctor named Chris steps in. I was okay with this, but was hoping on Jay. Well everything works out for a reason, Chis was just as talented as Jay and things went very smoothly. I found out later in the day that Chris used to date a very attractive nurse in Infusion 4. Sounds like Chris has lots of talent, dates attractive women, and has an MD after his name.
Since one surgery a day isn't enough for Jeff. After the port placement we where off to the one day surgery center for a bone marrow biopsy. I got my usual bed and got to catch up with operating room, and recovery room staff. So by the time all the fun was over with, all the sedation drugs wore off (date rape drugs or Micheal Jackson drugs). Jeff was hungry and crabby, and no one you would want to hang around with. Once again the family and caregivers don't get enough credit.
Thursday morning we had our usual blood draw around 7:00a.m. then we had a 12:30 p.m. doctor's appointment with Dr. Waheed and her staff. So the idea of just laying around and relaxing, since I had more holes in me than some of the Swiss cheese that you see in the Deli department. I was looking forward to some much desired down time. On Friday my mom and I where hosting a luncheon for some of our friends in Little Rock. My mom and I where both looking forward to spending time with some of our friends in Little Rock. But by the time Friday came around I was totally beat up from all the steroids, drugs and surgery. So I had wonderful time at the luncheon on Friday, but I wasn't the life of the party. Lucky for me my mother is a great host, and our friends in Little Rock are very understanding and easy going people.
So is anyone curious about what Dr. Waheed had to share with us? As has been the case since we headed down to Little Rock on December 9, 2012. My mom and I head into Dr. Waheed's office expecting her to say this or that. Or we are anticipating "Plan A" or "Plan B" and Dr. Waheed always come in with "Plan C". We are always very happy with "Plan C", we just never expect this course of treatment.
So as I have explained to you in the past, I am hanging out in the doctor's office waiting for our turn. As you can imagine they are rather busy at the MIRT center since they are considered by some to to be the best Myeloma clinic in the world. So I am feeling about the best I have felt since September or October, since my cancer levels continue to improve. So I am halfway through a book, and mom is doing whatever mom's do while they are sitting in the doctor's office waiting to hear about the health of her son.
We hear someone talking outside the room and it my be Dr. Waheed, Dr. Waheed comes into the office and she is being followed by Dr. Frits van Rhee. Dr. van Rhee was the doctor that I told you about in my first question and answer session back in January. So we already know and like him. So we go through the quick intro, they give us a quick up to where they are at in there discussion about me, and they go back into there doctor speak to one another. At this point with two doctors in the office talking about me in doctor language, my mom is ready to shit out a boweling ball. Once the two doctors get back into there discussion about me, they call up Dr. Barlogie and have him on the speaker phone. I joking think in my mind what this is going to cost? Having the 3 best minds in Arkansas on Myeloma working out a treatment schedule for me.
There are basically two type of stem cell transplants (this is all in simpled patient talk, so keep that in mind):
1. Autologous Transplant - this is when a Myeloma patient receives their own stem cells for the transplant. This type of transplant is very common with Myeloma, and is much safer and easier because you are receiving your own cells, and DNA. You don't normally have rejection issue' because you are getting your own jelly back.
2. Allogeneic Transplant - this type of transplant is very common for the treatment of Leukemia which is a disease with the red blood cells. Myeloma deals with the white blood cells. This type of transplant isn't as common with Myeloma. Plus you have to deal with finding a DNA match and lots of rejection issue's.
Myeloma basically falls into Low and High risk disease. If you have to have Myeloma you want Low risk, Low risk is much more treatable. Myeloma can move from Low to High risk. But usually what happens is the High risk disease was just doing a great job of hiding in Low risk and it finally sticks up it's evil head for medical science to see. At this point, I am still showing Low risk, which is awesome, but my disease is being extremely difficult and aggressive. Which explains the amount of time we have been spending in Little Rock. So we can continue with the normal treatment and another transplant. But all this treatment is going to shorten my life, and the clinic at UAMS is trying to set up a treatment schedule to get Jeff to 65. So we have to change our approach and do something different, because my body is not responding to the normal Myeloma treatment, and as you know, I have experienced lots of treatment. All this treatment is taking it's toll on old Jeff as well.
Your normal cancer center in your back yard is like a Ford or Chevy dealership. Nothing wrong with a Ford or Chevy dealership, they are just easy to find. Just like people travel from all over the world to come to the Cleveland Clinic for heart surgery. There are other hospitals that treat hearts, but when you have a difficult or special disease you want someone that specializes in the weird and different. So that is one of the many reasons we moved my treatment to Little Rock and UAMS. UAMS is more like a BMW or Mercedes dealership. These dealerships are out there, but not as common as a Ford or Chevy dealership.
Since I need to have a Allogeneic transplant, we need to find a Ferrari or Rolls-Royce dealership. Not only do we need to find the Ferrari dealership, we want to be happy with the doctors and staff. Kind of like enjoying the service department, and general manager at the high end dealership. So UAMS is going to get me back in remission and my family and I have homework to complete, to find the Rolls-Royce dealership.
I always told you I would ask for your help and suggestions if I ever needed them. Well, now is the time! I am going to search out and visit 3 centers that not only deal in Allogeneic transplants, but our experts with these transplants. So I need to spend this summer planning fundraisers and benefits to help with all the airfare, rental cars, living expenses and everything else involved. Once we find this center I will be living in that city for up to 6 months, and I may or may not be able to find a place to live as nice and understanding as the Family Home in Little Rock.
One idea I recently came up with was to host several Fish Fry's. This would bring all of us together, charge a little fee, and we all have a blast. But those events alone won't cover the adventures and expenses my family and I have ahead of us. So let's come up with some fun fundraisers that we can all enjoy.
In and effort to get me back in remission, I am going to undergo a stem cell boost. This is very similar to the 2 stem cell transplants that I have already undergone, but a little different. So I went back on the Jeff Bonin red Hurricane mix on Saturday morning (chemo). I will be enjoying my Hurricane mix for 4 days. So today is day 2. So I have 2 more days and a wake up with the black bag, steroids, and a oral cancer drug. The day after I come off the black bag I will get some of my stem cells or liquid gold to step up shop inside my body in all the vacant spaces left after the chemo kills everything inside my body. These new stem cells will be like the colonies that started this country a long time ago. This will give us time to find these Rolls-Royce dealerships.
On my previous transplants I received 1 or 2 bags of stem cells. Which is good for those people around a transplant patient, the fewer the bags, the less smell from the chemicals used to keep the cells healthy during there deep sleep in the big beer cooler in the basement at UAMS, like you see in the science fiction movies when they ship people off to Mars and the trip takes several years.
I am guessing that since my last stem cell collection back in February was less than ideal due to all the damage from all the cancer treatment that I have a good deal of zip-lock bags filled with low numbers of stem cells. So I am going to be receiving 9 bags of stem cells. They can only give a patient so many bags of stem cells in one day, so I get 2 days of special treatment. The smell a transplant patient gives off is very similar to creamy-corn. So I will be smelling like creamy-corn for quiet a while. Once again, lucky for my mom.
So I will keep this email short. I am looking forward to your replies with all your suggestions. Big and small. Crazy and normal. Because we are going to need them all!
Thanks, Jeff
I haven't heard any bad news from any of you, which is awesome. But feel free to send honest replies about what is going on in your life and with your kids. If you are living the "Little Life on a Prairie", and nothing bad is going on in your life. I think you are full of it.
Last week was rather busy on our end here in Little Rock. I was busy playing with the steroids and the "zombies" or "car-full of zombies" (Carfilzomib), on Monday and Tuesday mornings. The steroids take until Thursday and Friday to get out of my system and for me to not act so hyper. The "zombies" are very easy to hangout with.
The cancer patient is like the quarterback on the football field getting all the fame and glory. While the rest of the team (family) are the people and individuals that deserve all the credit. My mother is no exception to this rule. Be sure to thank her by email, phone, or card. Also, please reach out to my sister and her family, aunt's and uncle's, and last but not least, all my friends and all of you. I would miss every single one of you!
Tuesday evening at 8:30p.m. I had a MRI to check out some growth in my pelvis area. It was one of the quickest MRI's that I have ever experienced. Some MRI's can last over an hour. This MRI was over in 20 minutes, just like a normal guy, all over with in 20 minutes.
After my early dinner on Tuesday, I was on the "special diet". When you are on steroids you eat often and early. So by 3 and 4:00 a.m. on Wednesday morning I was rather hungry, but I had a big day a head of me with in and out surgery, on Wednesday. Wednesday morning I was at the Radiology surgery center at 7:00 a.m. to get ready for my new under the skin internal port. I have been avoiding receiving this port for over a year now. But the veins in my arms are really starting to look like a heroin addict from all the treatment. So this new port will allow the medical team back in Westlake, OH that puts up with me every Monday morning, to access me so much easierand give me my weekly dose of posoin. So no more of Jeff taking money from the nurses in Westlake, betting on how many times they have to poke my arm before they strike gold.
So I was laying on the meat table (surgery table) all prepped up, ready to go. I was blessed to have a doctor with the first name of Jay working on me. Molly hachet was in the area. But due to the type of work I was having done on Wednesday morning, Jay was the better person for the job. Jay and I go back to when I was just a rookie in the cancer world. So here I am all ready to go on the meat table (lucky for me there was not tag on my toe), waiting on Jay, and Jay is no where to be found. He must have stepped out for a coffee break or to talk to his investment broker. So a younger doctor named Chris steps in. I was okay with this, but was hoping on Jay. Well everything works out for a reason, Chis was just as talented as Jay and things went very smoothly. I found out later in the day that Chris used to date a very attractive nurse in Infusion 4. Sounds like Chris has lots of talent, dates attractive women, and has an MD after his name.
Since one surgery a day isn't enough for Jeff. After the port placement we where off to the one day surgery center for a bone marrow biopsy. I got my usual bed and got to catch up with operating room, and recovery room staff. So by the time all the fun was over with, all the sedation drugs wore off (date rape drugs or Micheal Jackson drugs). Jeff was hungry and crabby, and no one you would want to hang around with. Once again the family and caregivers don't get enough credit.
Thursday morning we had our usual blood draw around 7:00a.m. then we had a 12:30 p.m. doctor's appointment with Dr. Waheed and her staff. So the idea of just laying around and relaxing, since I had more holes in me than some of the Swiss cheese that you see in the Deli department. I was looking forward to some much desired down time. On Friday my mom and I where hosting a luncheon for some of our friends in Little Rock. My mom and I where both looking forward to spending time with some of our friends in Little Rock. But by the time Friday came around I was totally beat up from all the steroids, drugs and surgery. So I had wonderful time at the luncheon on Friday, but I wasn't the life of the party. Lucky for me my mother is a great host, and our friends in Little Rock are very understanding and easy going people.
So is anyone curious about what Dr. Waheed had to share with us? As has been the case since we headed down to Little Rock on December 9, 2012. My mom and I head into Dr. Waheed's office expecting her to say this or that. Or we are anticipating "Plan A" or "Plan B" and Dr. Waheed always come in with "Plan C". We are always very happy with "Plan C", we just never expect this course of treatment.
So as I have explained to you in the past, I am hanging out in the doctor's office waiting for our turn. As you can imagine they are rather busy at the MIRT center since they are considered by some to to be the best Myeloma clinic in the world. So I am feeling about the best I have felt since September or October, since my cancer levels continue to improve. So I am halfway through a book, and mom is doing whatever mom's do while they are sitting in the doctor's office waiting to hear about the health of her son.
We hear someone talking outside the room and it my be Dr. Waheed, Dr. Waheed comes into the office and she is being followed by Dr. Frits van Rhee. Dr. van Rhee was the doctor that I told you about in my first question and answer session back in January. So we already know and like him. So we go through the quick intro, they give us a quick up to where they are at in there discussion about me, and they go back into there doctor speak to one another. At this point with two doctors in the office talking about me in doctor language, my mom is ready to shit out a boweling ball. Once the two doctors get back into there discussion about me, they call up Dr. Barlogie and have him on the speaker phone. I joking think in my mind what this is going to cost? Having the 3 best minds in Arkansas on Myeloma working out a treatment schedule for me.
There are basically two type of stem cell transplants (this is all in simpled patient talk, so keep that in mind):
1. Autologous Transplant - this is when a Myeloma patient receives their own stem cells for the transplant. This type of transplant is very common with Myeloma, and is much safer and easier because you are receiving your own cells, and DNA. You don't normally have rejection issue' because you are getting your own jelly back.
2. Allogeneic Transplant - this type of transplant is very common for the treatment of Leukemia which is a disease with the red blood cells. Myeloma deals with the white blood cells. This type of transplant isn't as common with Myeloma. Plus you have to deal with finding a DNA match and lots of rejection issue's.
Myeloma basically falls into Low and High risk disease. If you have to have Myeloma you want Low risk, Low risk is much more treatable. Myeloma can move from Low to High risk. But usually what happens is the High risk disease was just doing a great job of hiding in Low risk and it finally sticks up it's evil head for medical science to see. At this point, I am still showing Low risk, which is awesome, but my disease is being extremely difficult and aggressive. Which explains the amount of time we have been spending in Little Rock. So we can continue with the normal treatment and another transplant. But all this treatment is going to shorten my life, and the clinic at UAMS is trying to set up a treatment schedule to get Jeff to 65. So we have to change our approach and do something different, because my body is not responding to the normal Myeloma treatment, and as you know, I have experienced lots of treatment. All this treatment is taking it's toll on old Jeff as well.
Your normal cancer center in your back yard is like a Ford or Chevy dealership. Nothing wrong with a Ford or Chevy dealership, they are just easy to find. Just like people travel from all over the world to come to the Cleveland Clinic for heart surgery. There are other hospitals that treat hearts, but when you have a difficult or special disease you want someone that specializes in the weird and different. So that is one of the many reasons we moved my treatment to Little Rock and UAMS. UAMS is more like a BMW or Mercedes dealership. These dealerships are out there, but not as common as a Ford or Chevy dealership.
Since I need to have a Allogeneic transplant, we need to find a Ferrari or Rolls-Royce dealership. Not only do we need to find the Ferrari dealership, we want to be happy with the doctors and staff. Kind of like enjoying the service department, and general manager at the high end dealership. So UAMS is going to get me back in remission and my family and I have homework to complete, to find the Rolls-Royce dealership.
I always told you I would ask for your help and suggestions if I ever needed them. Well, now is the time! I am going to search out and visit 3 centers that not only deal in Allogeneic transplants, but our experts with these transplants. So I need to spend this summer planning fundraisers and benefits to help with all the airfare, rental cars, living expenses and everything else involved. Once we find this center I will be living in that city for up to 6 months, and I may or may not be able to find a place to live as nice and understanding as the Family Home in Little Rock.
One idea I recently came up with was to host several Fish Fry's. This would bring all of us together, charge a little fee, and we all have a blast. But those events alone won't cover the adventures and expenses my family and I have ahead of us. So let's come up with some fun fundraisers that we can all enjoy.
In and effort to get me back in remission, I am going to undergo a stem cell boost. This is very similar to the 2 stem cell transplants that I have already undergone, but a little different. So I went back on the Jeff Bonin red Hurricane mix on Saturday morning (chemo). I will be enjoying my Hurricane mix for 4 days. So today is day 2. So I have 2 more days and a wake up with the black bag, steroids, and a oral cancer drug. The day after I come off the black bag I will get some of my stem cells or liquid gold to step up shop inside my body in all the vacant spaces left after the chemo kills everything inside my body. These new stem cells will be like the colonies that started this country a long time ago. This will give us time to find these Rolls-Royce dealerships.
On my previous transplants I received 1 or 2 bags of stem cells. Which is good for those people around a transplant patient, the fewer the bags, the less smell from the chemicals used to keep the cells healthy during there deep sleep in the big beer cooler in the basement at UAMS, like you see in the science fiction movies when they ship people off to Mars and the trip takes several years.
I am guessing that since my last stem cell collection back in February was less than ideal due to all the damage from all the cancer treatment that I have a good deal of zip-lock bags filled with low numbers of stem cells. So I am going to be receiving 9 bags of stem cells. They can only give a patient so many bags of stem cells in one day, so I get 2 days of special treatment. The smell a transplant patient gives off is very similar to creamy-corn. So I will be smelling like creamy-corn for quiet a while. Once again, lucky for my mom.
So I will keep this email short. I am looking forward to your replies with all your suggestions. Big and small. Crazy and normal. Because we are going to need them all!
Thanks, Jeff
march 13, 2013
AROMA OF CORN
Try this one on for size....."Opportunity wears many disguises, including trouble. by Frank Tyger. I would also say that opportunity usually comes wearing works cloths.
One of the nurses at Infusion 4 that looks out for me and has a sense of humor as sick as mine shared my odor with us in this way. "The aroma of corn....it's very rare and very expensive." Referring to the cologne that I was "wearing" for about 3 days. After my stem cell boost last Thursday and Friday.
Like I mentioned in my previous email. I had a good deal of miscellaneous zip-lock bags hanging out in the giant beer cooler in the basement of UAMS filled with my stem cells or liquid gold. Theses healthy stem cells are basically my current lifeline. So in an effort for us to use up the odds and ends, I received 11 bags of stem cells last Thursday and Friday, March 7 and 8, 2013. Receiving a total of almost 4 million stem cells. Due to all the fluid and preservatives in the bags I couldn't receive all those bags in one setting, so I had 2 days of fun in my own private room at Infusion 4. The transplant itself is done by a APN nurse and started and fallowed by one of the oncology nurses at Infusion 4. So I was tying up a few folks on those mornings/afternoons. On Thursday I received 6 bags, and got the balance of 5 bags on Friday. I was so bloated from all the fluids that I felt like the old Tom and Jerry cartoons that I watched as a kid. Where Tom or Jerry would burp and the burp came out as a big bubble filled with whatever was allying them.
Before you become an old vet with all this MM (Multiple Myeloma) cancer treatment the word stem cell transplant kind of leaves a patient guessing as to what is really going to happen on your day of transplant. Since everything is outpatient down here you show up at your normal appointment time (business as usual). But rather than getting the big lazy boy reclining chair, you get the private room, with no view on this occasion. After they get your vital signs and get you settled in the bed they give you a premed of benedril to relax a nervous patient. They have to really water down the benedril (medication to relax you) or I am going to sleep until next week. While all this is going on in front of the patient in Infusion 4 the folks that work in and around the beer cooler are going through the cooler looking for that patients particular stem cell of choice. They don't want to turn this Autologous boost (patients own cells) into an Allogeneic (donor) transplant by giving me a Bud Light, rather than a Budweiser.
Before you know it, the fine folks from the cooler are up at your room with a normal looking igloo lunch box that has the patients zip-lock bags of stem cells. From what the APN shared with me, not all bags of stem cells look the same. Over all the transplants and now boost's that I have had, the bags looked similar. Which is kind of a small zip-lock bag filled with V-8 juice. It has a murky gold color, which is my very close buds, the stem cells floating around. Now I forgot to ask how they count all these stem cells that look like a gold pin heads, so remind me to get back to you on that one. I did ask how they thaw the zip-lock bags out. Which is with a warm wash or bowel of water, not hot cauz you don't want to damage or unset those cells. Those stem cells have been in that deep science fiction movie sleep like at the beginning of the movie Aliens with Sigourney Weaver. I always thought that my Grandmother on my father's side looked just like her, but you didn't ask me that. So you don't to just wake these cells up and expect them to go right to work, you have to wake them up nicely. They also run a test on the cells to make sure they are usable, I will have to look into those medical wonders for you as well. They hook the zip-lock bag up to my medical IV line and away those boys and girls go, like down a water slide at the water park. As soon as the cells hit my system, I can taste and smell all the chemicals or preservatives and a gasy feeling like a burp comes up from my stomach. So I have to suck on candy to get rid of the taste. My face and ears turn red from all the DNA entering my body, but I have been fortunate to never have any reactions or problems. So it's basically like receiving blood. Kind of boring, but that is the actual transplant or boost, depending on what a patent is in for. After receiving all the zip-lock bags they monitor me for about 2 hours, pat me on the butt and move on to the next patient.
As the days and weeks after the stem cell boost past bye, my body and system will bottom out, and with the help of growth shots come back up to a move stable level with a tiny immune system. At which point I will go visit with the doctor, and maybe, just maybe, she will give us a normal answer and a discharge. Rather than Option C, with more treatment.
As of today, Wednesday March 13, 2013. I have been receiving blood and platelets quite often due to all the tomahawk missile damage to my system from the chemotherapy. I should be close to hitting the lower limits with my WBC (White Blood Cells, immune system) at .03, so Jeff has no immune system. So my hands are almost raw from washing them after touching every door handle and remote control. If I catch a cold or flu it could delay my treatment and recovery. I also can't eat anything that isn't full cooked, like a salad. Which I enjoy eating, but can't right now. I am down to 138lbs. so not super lean, just down a little. So I can eat all the ice cream and sweets I desire, but I never really eat that stuff. Just like with all of you, most of the days down here in Little Rock tend to go bye fairly fast with the medical schedule. The weekends fly bye, and then it's Monday morning. Would you believe a person can actual miss working. Remember that this coming Monday morning when you just want to use the snooze bar. If you enjoy what you do for a living to help society and others, you will miss the crazy stressful days. Especially if you have the rug pulled out from under you, like I did.
I can't thank all of you enough for all your Fundrasing ideas. My sister is working on a "Bonin's back in town" at a bar on the westside of Cleveland in a few weeks, if I am home. So stay tuned for those details. My cousin Julie put together a donation web page at: http://www.youcaring.com/medical-fundraiser/Helping-Jeff/46565 So be sure to check that out. I have heard rumors of Fish Fry's. My Aunt Trish said I could place donated items at her annual garage sale, so check the garage and attic for those items. If that isn't enough, my sister is putting together an event at her place in Fairview Park. So you will have to stay tuned as more events as everything comes together. All these events will give us an excuse to get together and catch up after my long stay in the south.
I guess I hit my 3 paragraph minimum for a weekly update. So I will let you leave the "Land of the sick people" as I call it, and get back to your normal scheduled life. Jeff
Try this one on for size....."Opportunity wears many disguises, including trouble. by Frank Tyger. I would also say that opportunity usually comes wearing works cloths.
One of the nurses at Infusion 4 that looks out for me and has a sense of humor as sick as mine shared my odor with us in this way. "The aroma of corn....it's very rare and very expensive." Referring to the cologne that I was "wearing" for about 3 days. After my stem cell boost last Thursday and Friday.
Like I mentioned in my previous email. I had a good deal of miscellaneous zip-lock bags hanging out in the giant beer cooler in the basement of UAMS filled with my stem cells or liquid gold. Theses healthy stem cells are basically my current lifeline. So in an effort for us to use up the odds and ends, I received 11 bags of stem cells last Thursday and Friday, March 7 and 8, 2013. Receiving a total of almost 4 million stem cells. Due to all the fluid and preservatives in the bags I couldn't receive all those bags in one setting, so I had 2 days of fun in my own private room at Infusion 4. The transplant itself is done by a APN nurse and started and fallowed by one of the oncology nurses at Infusion 4. So I was tying up a few folks on those mornings/afternoons. On Thursday I received 6 bags, and got the balance of 5 bags on Friday. I was so bloated from all the fluids that I felt like the old Tom and Jerry cartoons that I watched as a kid. Where Tom or Jerry would burp and the burp came out as a big bubble filled with whatever was allying them.
Before you become an old vet with all this MM (Multiple Myeloma) cancer treatment the word stem cell transplant kind of leaves a patient guessing as to what is really going to happen on your day of transplant. Since everything is outpatient down here you show up at your normal appointment time (business as usual). But rather than getting the big lazy boy reclining chair, you get the private room, with no view on this occasion. After they get your vital signs and get you settled in the bed they give you a premed of benedril to relax a nervous patient. They have to really water down the benedril (medication to relax you) or I am going to sleep until next week. While all this is going on in front of the patient in Infusion 4 the folks that work in and around the beer cooler are going through the cooler looking for that patients particular stem cell of choice. They don't want to turn this Autologous boost (patients own cells) into an Allogeneic (donor) transplant by giving me a Bud Light, rather than a Budweiser.
Before you know it, the fine folks from the cooler are up at your room with a normal looking igloo lunch box that has the patients zip-lock bags of stem cells. From what the APN shared with me, not all bags of stem cells look the same. Over all the transplants and now boost's that I have had, the bags looked similar. Which is kind of a small zip-lock bag filled with V-8 juice. It has a murky gold color, which is my very close buds, the stem cells floating around. Now I forgot to ask how they count all these stem cells that look like a gold pin heads, so remind me to get back to you on that one. I did ask how they thaw the zip-lock bags out. Which is with a warm wash or bowel of water, not hot cauz you don't want to damage or unset those cells. Those stem cells have been in that deep science fiction movie sleep like at the beginning of the movie Aliens with Sigourney Weaver. I always thought that my Grandmother on my father's side looked just like her, but you didn't ask me that. So you don't to just wake these cells up and expect them to go right to work, you have to wake them up nicely. They also run a test on the cells to make sure they are usable, I will have to look into those medical wonders for you as well. They hook the zip-lock bag up to my medical IV line and away those boys and girls go, like down a water slide at the water park. As soon as the cells hit my system, I can taste and smell all the chemicals or preservatives and a gasy feeling like a burp comes up from my stomach. So I have to suck on candy to get rid of the taste. My face and ears turn red from all the DNA entering my body, but I have been fortunate to never have any reactions or problems. So it's basically like receiving blood. Kind of boring, but that is the actual transplant or boost, depending on what a patent is in for. After receiving all the zip-lock bags they monitor me for about 2 hours, pat me on the butt and move on to the next patient.
As the days and weeks after the stem cell boost past bye, my body and system will bottom out, and with the help of growth shots come back up to a move stable level with a tiny immune system. At which point I will go visit with the doctor, and maybe, just maybe, she will give us a normal answer and a discharge. Rather than Option C, with more treatment.
As of today, Wednesday March 13, 2013. I have been receiving blood and platelets quite often due to all the tomahawk missile damage to my system from the chemotherapy. I should be close to hitting the lower limits with my WBC (White Blood Cells, immune system) at .03, so Jeff has no immune system. So my hands are almost raw from washing them after touching every door handle and remote control. If I catch a cold or flu it could delay my treatment and recovery. I also can't eat anything that isn't full cooked, like a salad. Which I enjoy eating, but can't right now. I am down to 138lbs. so not super lean, just down a little. So I can eat all the ice cream and sweets I desire, but I never really eat that stuff. Just like with all of you, most of the days down here in Little Rock tend to go bye fairly fast with the medical schedule. The weekends fly bye, and then it's Monday morning. Would you believe a person can actual miss working. Remember that this coming Monday morning when you just want to use the snooze bar. If you enjoy what you do for a living to help society and others, you will miss the crazy stressful days. Especially if you have the rug pulled out from under you, like I did.
I can't thank all of you enough for all your Fundrasing ideas. My sister is working on a "Bonin's back in town" at a bar on the westside of Cleveland in a few weeks, if I am home. So stay tuned for those details. My cousin Julie put together a donation web page at: http://www.youcaring.com/medical-fundraiser/Helping-Jeff/46565 So be sure to check that out. I have heard rumors of Fish Fry's. My Aunt Trish said I could place donated items at her annual garage sale, so check the garage and attic for those items. If that isn't enough, my sister is putting together an event at her place in Fairview Park. So you will have to stay tuned as more events as everything comes together. All these events will give us an excuse to get together and catch up after my long stay in the south.
I guess I hit my 3 paragraph minimum for a weekly update. So I will let you leave the "Land of the sick people" as I call it, and get back to your normal scheduled life. Jeff
June 11, 2013
Live from New York!
Dear Friends and Family, Jeff wrote the message below to share with all of you. He asked me to finish it for him and email it out, so there will be a section at the bottom where I took his "field notes" and elaborated for him upon request. The doctors in NY have Jeff on a new variety of "chemo cocktails" and it causes much nausea; but of course you won't hear him complaining. Here are his latest thoughts for you to enjoy... I hope you didn't mind me taking a few weeks off my medical writing tour in Little Rock, Arkansas, and enjoying myself back in Ohio. The drive back home was uneventful, which is how all of us want our 12 to 14 hour trips to turn out. The drive back to Ohio did have a big surprise at the end, with my sister and her family coming over to welcome us home! If I remember correctly, we arrived home on Thursday evening. By Monday morning I was back to my crazy non-stop schedule. My sister and I didn't waste any time, within a week or so the two of us where out in Minnesota, checking into my medical options at the University of Minnesota. We also checked out the hospital in New York, New York called Memorial Sloan-Kettering Cancer Center (MSKCC). It turned out that both of the medical centers were very well-qualified, but New York won out due to a clinical trial (T cell depletion) that only New York offers. When I met with the medical folks in New York about a month ago they said that we would begin the Allo transplant in 6 to 8 weeks. Everything must have gone very smoothly on their end, because they ended up moving up the transplant about one month, which is great news! So last Tuesday my Mom and I checked into the MSKCC. As soon as we got off the plane we headed to the hospital. A good friend of mine from the marina, Chris, has a brother that lives in New York. His brother, Ron, picked us up at the airport and drove us to the hospital. After we checked into the hospital I got in line for surgery to have my line placement surgery. The line that I received at the hospital is much larger and more complicated to install, so that took a little bit of time. Then after a quick stop at X-ray they welcomed me to my new home on the 8th floor in room M817. I will be living in this room for the next 30 days or so. I am able to walk the halls of the floor, which is a big rectangle (14 laps equals 1 mile) until my immune system drops, then I will be confined to the room. My care giver's and hospital staff have to wear a surgical mask and rubber gloves while they are in the room with me. I have to wear the mask and rubber gloves when I step out to walk the floors. This is all done for my safety in a effort to keep me from getting sick or catching anything. The room I have been blessed with is a good size room, about the size of a 1 car garage. Some of the rooms are much smaller! From my room, I have a tiny view of the city. While I am staying at the hospital, I am not allowed to shave with a razor or use fingernail clippers. These are just a few of the interesting rules that I need to stick to. So are you curious about my stem cell donor? I know I was.....you will have to read on for those details.......I was going to make you wait until the end of the email to tell you about the donor, but I can't do that to you. The donor is a 10 out of 10 match for me, and a female. That is all I know right now, and after 1 year's time they will let us contact each other if both parties wish to contact each other. Other "field notes" from Jeff:-new friend = IV pole-they keep the patients busy with physical therapy and other surprise guests-transplant is Friday -food is good -thanks for your love and support Now a few thoughts from me to fill you in on Jeff's notes. When Jeff checked in to MSKCC they immediately introduced him to his new best friend, the IV pole. Of course, it goes with him everywhere and has walked many miles up and down the hall with him. Right away he enlisted Nola and Graham to decorate it for him, and they were happy to get right to work on that important task for Uncle Jeff. They made lots of paper fish that he plans to hang down from the top of the IV pole like a mobile. It will remind him of the joys of fishing on Lake Erie and hanging with his Maple Grove friends. Jeff has been busy with lots of treatments and visits from physical therapists, dietitians, memory doctors, hospital librarians, and they even offer patients a variety of music therapy and massage options. Of course, in typical Jeff fashion he has already made friends with all the locals there (other hospital patients). The last day in this chemo round is Wednesday (this particular chemo is nicknamed the "rabbit" but rumor has that it's pretty fierce as it knocks your white blood cell count to zero) followed by a day of rest on Thursday. Then it's the big transplant day on Friday! He is not sure what time the big event takes place on Friday. The timing is directly related to when the courier service arrives with the donor cells as there is a 24 hour turn-around time required to keep the cells viable. Jeff reports that the hospital food is good. He is also finding that smaller meals, more frequently helps with his nausea and the homemade milkshakes from the kitchen are really tasty! His address for the next 30 days or so is: Memorial Sloan-Kettering Cancer CenterJeff Bonin, patientM 817 (8th floor)1275 York AvenueNew York, NY 10065 You can also send him a message on his www.JeffBonin.com website. As you know, Jeff loves to find and share inspirational quotes with all of us. He has previously found several that he thought I would enjoy and mailed them to me unexpectedly; such a fun surprise from him! It would be great if each of us found a favorite inspirational quote and then mailed it to him or posted it on the message board on his website. I'm sure he would enjoy these upbeat notes over the next 100 days. . The "changing of the guard" (care taker switch) is set for June 23 when I fly to NY and our mom will fly home for 10 days. Then she will be back in NY on July 2 for her next "tour of duty". Jeff wants to be sure that you know how much he values your constant support and friendship! Thank you for all your love and kindness! With gratitude,Jeff and Christine
Dear Friends and Family, Jeff wrote the message below to share with all of you. He asked me to finish it for him and email it out, so there will be a section at the bottom where I took his "field notes" and elaborated for him upon request. The doctors in NY have Jeff on a new variety of "chemo cocktails" and it causes much nausea; but of course you won't hear him complaining. Here are his latest thoughts for you to enjoy... I hope you didn't mind me taking a few weeks off my medical writing tour in Little Rock, Arkansas, and enjoying myself back in Ohio. The drive back home was uneventful, which is how all of us want our 12 to 14 hour trips to turn out. The drive back to Ohio did have a big surprise at the end, with my sister and her family coming over to welcome us home! If I remember correctly, we arrived home on Thursday evening. By Monday morning I was back to my crazy non-stop schedule. My sister and I didn't waste any time, within a week or so the two of us where out in Minnesota, checking into my medical options at the University of Minnesota. We also checked out the hospital in New York, New York called Memorial Sloan-Kettering Cancer Center (MSKCC). It turned out that both of the medical centers were very well-qualified, but New York won out due to a clinical trial (T cell depletion) that only New York offers. When I met with the medical folks in New York about a month ago they said that we would begin the Allo transplant in 6 to 8 weeks. Everything must have gone very smoothly on their end, because they ended up moving up the transplant about one month, which is great news! So last Tuesday my Mom and I checked into the MSKCC. As soon as we got off the plane we headed to the hospital. A good friend of mine from the marina, Chris, has a brother that lives in New York. His brother, Ron, picked us up at the airport and drove us to the hospital. After we checked into the hospital I got in line for surgery to have my line placement surgery. The line that I received at the hospital is much larger and more complicated to install, so that took a little bit of time. Then after a quick stop at X-ray they welcomed me to my new home on the 8th floor in room M817. I will be living in this room for the next 30 days or so. I am able to walk the halls of the floor, which is a big rectangle (14 laps equals 1 mile) until my immune system drops, then I will be confined to the room. My care giver's and hospital staff have to wear a surgical mask and rubber gloves while they are in the room with me. I have to wear the mask and rubber gloves when I step out to walk the floors. This is all done for my safety in a effort to keep me from getting sick or catching anything. The room I have been blessed with is a good size room, about the size of a 1 car garage. Some of the rooms are much smaller! From my room, I have a tiny view of the city. While I am staying at the hospital, I am not allowed to shave with a razor or use fingernail clippers. These are just a few of the interesting rules that I need to stick to. So are you curious about my stem cell donor? I know I was.....you will have to read on for those details.......I was going to make you wait until the end of the email to tell you about the donor, but I can't do that to you. The donor is a 10 out of 10 match for me, and a female. That is all I know right now, and after 1 year's time they will let us contact each other if both parties wish to contact each other. Other "field notes" from Jeff:-new friend = IV pole-they keep the patients busy with physical therapy and other surprise guests-transplant is Friday -food is good -thanks for your love and support Now a few thoughts from me to fill you in on Jeff's notes. When Jeff checked in to MSKCC they immediately introduced him to his new best friend, the IV pole. Of course, it goes with him everywhere and has walked many miles up and down the hall with him. Right away he enlisted Nola and Graham to decorate it for him, and they were happy to get right to work on that important task for Uncle Jeff. They made lots of paper fish that he plans to hang down from the top of the IV pole like a mobile. It will remind him of the joys of fishing on Lake Erie and hanging with his Maple Grove friends. Jeff has been busy with lots of treatments and visits from physical therapists, dietitians, memory doctors, hospital librarians, and they even offer patients a variety of music therapy and massage options. Of course, in typical Jeff fashion he has already made friends with all the locals there (other hospital patients). The last day in this chemo round is Wednesday (this particular chemo is nicknamed the "rabbit" but rumor has that it's pretty fierce as it knocks your white blood cell count to zero) followed by a day of rest on Thursday. Then it's the big transplant day on Friday! He is not sure what time the big event takes place on Friday. The timing is directly related to when the courier service arrives with the donor cells as there is a 24 hour turn-around time required to keep the cells viable. Jeff reports that the hospital food is good. He is also finding that smaller meals, more frequently helps with his nausea and the homemade milkshakes from the kitchen are really tasty! His address for the next 30 days or so is: Memorial Sloan-Kettering Cancer CenterJeff Bonin, patientM 817 (8th floor)1275 York AvenueNew York, NY 10065 You can also send him a message on his www.JeffBonin.com website. As you know, Jeff loves to find and share inspirational quotes with all of us. He has previously found several that he thought I would enjoy and mailed them to me unexpectedly; such a fun surprise from him! It would be great if each of us found a favorite inspirational quote and then mailed it to him or posted it on the message board on his website. I'm sure he would enjoy these upbeat notes over the next 100 days. . The "changing of the guard" (care taker switch) is set for June 23 when I fly to NY and our mom will fly home for 10 days. Then she will be back in NY on July 2 for her next "tour of duty". Jeff wants to be sure that you know how much he values your constant support and friendship! Thank you for all your love and kindness! With gratitude,Jeff and Christine
July 1, 2013
Hello Everyone! Seems like all I have been doing with my time as of December 2012 is hanging out in hospitals. By the time this stem cell transplant is over with I will have racked up somewhere around 8 months in the hospital, since December. A good portion of the time in the hospital has been 8 months straight, outside of the short break I got between Little Rock and New York. It still feels weird hanging out in the hospital, even though I spend so much them in these faculties. I still act, feel, and live like the healthy guy I was before all this cancer mess began. With that being said, I am glad I that I had all the previous training before this trip to New York City. The fine folks at Memorial Sloan-Kettering Cancer Center have really taken chemo cancer treatment to a level that I have been fortunate enough to avoid until now. After checking in on Tuesday, June 4 and getting moved into isolation they move right into the fun chemotherapy. It's a 24/7 cycle of the nurses adding and taking away used bags of chemo from my IV pole, or my shadow (one of the cleaner names I have for the IV pole). Every where Jeff goes, the IV pole goes. After a few days of being double fisted with these non-stop cocktails (chemo). You mind almost goes into a fog. But they always save the best for last. The slang term for the last cycle of chemo is called the rabbit, because they make the chemo from animal serum. This chemo is going to prep my body to receive the new donor DNA. So you have to walk over these hot coals to get the type of T cell depleted stem cell transplant we came to New York to receive. They warn you up front about all the nasty side effects and also tell you that they will be at your bedside to help you through all this, and they aren't kidding. They are right there at my bedside. So my last 2 days of a chemo are two, 12 hours cycles of the rabbit. We all joke is it going to be the Easter Bunny? Bugs Bunny? Ya never know. In the 12 hours cycle it's about the amount of fluid or volume that I have to receive, not just a 12 treatment cycle. So it generally take longer than 12 hours. The rabbit is such a nasty chemo that they give a patient lots of premeds to help with the side effects, like fever, heavy shaking, increased heart rate, etc. So here we go! (12 noon) They fire up the pumps of the rabbit on the IV pole and off to the races we go. They start pumping the rabbit very slow and increase the flow rate as time goes on, to help with reactions. They also checks my vital signs every 15 minutes for the first 1 hour to see how I am doing. So things move along okay and we are getting into hour 4 of 12 and I start shaking like Janet Reno (former Attorney General under President Clinton) and I have 4 heated blankets on top of me and one wrapped around my head. At hour 5 I started a fever that went as high as 104. Lastly my heart rate started to climb and got as high as 150. At that point they pulled the plug in fear of pushing me into a heart-attack. So they brought the procedure to a temporary halt, put a heart monitor on me and waited for my temp, heart rate, and fever to go away so we can start the game all over again. So they watched me all night and my body would not calm down. It took until 7:00a.m. the fallowing morning. No one is telling me this, but if I can't make it through the rabbit chemo, I will not be able to under go the clinical trial transplant that we came to New York to receive. So no pressure on my end, no pressure at all, lol. So we have 6 hours of treatment from the day before to make up, plus the 12 hours on the books for today. Let's fire up those rabbit's, doc I just sat back and relaxed, knowing that the Lord, your prayers and support, and a great medical staff would carry me thought. It took us 21 hours straight to get all the rabbit chemo in my system, but we did it. I hope you felt the high five I sent your way. The nurse's I was blessed to have were nothing short of amazing. Almost using up 2 shifts of nurses just for my chemo treatment! After all that chemo, I don't want to be in the same room with any bags of chemo in the very near future. As you can image, 7 days of chemo leaves all kinds of damage (side effects) in it's wake. It wasn't unusual to have something coming out both ends at the same time. Most patient aren't able to eat for a few days or weeks. I was able to eat something the entire time, usually very small meals every few hours. I got about a 1/2 day of rest, then it was transplant time. The got the cells into my room around 5:00p.m and into me around 5:12p.m. The transplant was over with at 5:17p.m. It was just a large turkey baster looking needle filled with a water or spite pop looking fluid. I didn't taste anything during the injection and didn't have any reactions. I basically went to sleep at 5:25p.m. Then order a small meal around 6:30p.m. I had 2 more weeks of recovery in the hospital, which is a short amount of time compared to other patients. I was blessed to get into a Family Home similar to the place that we stayed at in Little Rock, AR. I have not idea how long I will be staying in New York. I am hoping to leave around mid-August. But it could be several months longer. It all depends on how this transplant works out. At this point, I am still sleeping and resting a good portion of the day. A good deal of the energy I have is being used up by my the new stem cells setting up shop in my body. Not to mention my body still recovering from all the chemo. So things get a little better each day. Now that I am feeling better, I will try and get these email updates back to a weekly schedule for all of you. I have a new mailing address: Jeff Bonin, Room # 1005, 132 West 32nd Street, New York, NY 10001. So I will let you go now and will be back in touch soon! Jeff
july 10, 2013
Hello Cancer Free People! What is going on in the real world? Probably lots of work, hustle and bustle, and a little stress in between. Not to much has been going on here, which is a good thing as far as I am concerned. It feels great to be out of the hospital and isolation. The weather in New York is almost the same as Ohio, hot, sticky, and a little rainy. During my treatment in Little Rock I went to the hospital everyday like a full-time job. At Sloan-Kettering, I only head to the hospital once or twice a week at this point. Part of the reason for me not having to spend so much time at the hospital is because things are going so well, and I don't need to use up any time from the doc's. So I don't have any interesting treatment stories to share with you this week. This coming Thursday (tomorrow) is a big treatment day. It will be day 30 since my Allogenic transplant. So that means it's bone marrow biopsy time! This biopsy will tell the doc's what is going on with my cancer and how well the transplant is working out. The last biopsy at Sloan had me kicking like a mule during the painful part of the procedure. Since I don't have any treatment stories this week, I thought I would share with you the layout of the playing field up here in New York. The lodge that I am staying at is in the mid-town area of Manhattan. The island of Manhattan is 12 miles long from North to South. So as you can picture, mid-town is in the central part of the island. The part of mid-town that I am living in is really a happening spot. Due to the fact that the Empire State building is right down the street. Also less than a block away is Penn station for probably 100,000 or more commuters daily. If that isn't a enough, Madison Square Garden is right here also. So all the restaurants, bars, and shops have there prices marked up for all the tourist and commuters. It's not uncommon to see a restaurant ask $20.00 for a hamburger in this area, and it's not necessary a good hamburger. The hospital runs a shuttle for patients 7 days a week from the Lodge to the hospital, which is totally awesome. Because they don't want me riding on the subway at this point for fear of me catching some kind of flu bug. A cab back and fourth would really get expensive. The shuttle looks like the short school bus that I rode to school as a child, and it makes constant loops or runs to the hospital all day long. So we pile into the party bus and head off to the hospital. The hospital is located on the Upper East side. If you can picture the island of Manhattan, Central Park is about two-thirds of the way up from the south. The hospital is on the Upper East side of the Park. The Upper East side is a very nice, clean, and safe area of New York. By Ohio standards a middle class family would spend over half of their income or more on rent to live on the Upper East, and that's not for a large place. I have yet to venture off into the Upper Westside. Everyday we go for a rather long walk in a new direction by the Lodge. Checking out the sites and people of the city. I don't really have any restrictions to speak of. Other than to avoid large groups of people so I don't catch a cold or get and infection. Since my body is in transition from the transplant, I am not allowed to eat out. A slightly dirty kitchen, or some food that is a little under cooked could cause me all kinds of heartache and sorrow. So I have to eat all my meals in. Which means I am missing out on some of the best bar food on the east coast. The Lodge that I am staying at is amazing, and for cancer patients and one caregiver only. Due to all the people that the Lodge tries to help, we all share a common kitchen like the Family Home in Little Rock, AR. There are 12 rooms on our floor. So 6 other cancer patients and their caregiver our sharing a refrigerator with us. So we have a plastic bind for all our items in the fridge. You could probably fit about 2 pairs of shoes in our plastic bind. So it's tough to store items in the fridge. To accommodate for this we just go shopping on a daily basis, which is cool, gives us something to do. We try and cook our food during the non-peak hours in the kitchen and just heat up the food when we feel like eating. The kitchen is a popular place and fills up fast. 6 people trying to cook 6 different meals in a small space can put anyone on edge. So we try to avoid all that excitement. My mom is hanging out with me in the big city currently. My sister has a conference in New York in a few weeks. So she will be coming up to give mom a break in the near future. At this point no one knows how long I will be hanging out in New York. I have heard rumors, and we know how reliable those rumors can be. That some doctors make their patients stay the entire 100 days after an Allogenic transplant. I am hoping to be leaving New York by mid-August so I can get back on Lake Erie for the Fall perch fishing. A few of the patients on the floor with us have gone home and managed to pick up some sort of infection and had to return. I plan on trying to avoid all that fun stuff. Outside of the high cost of living, New York is a great place to visit and I can see why so many people want to live here. I enjoy not having to drive. If I did drive in the city it would be an old car that I didn't care about. All these people driving all these cars that cost more than I make in a year, I will never understand. Then you have to try and find a parking spot were ever you drive. Some New Yorkers have a bumper for there bumper. It kind of looks like a thick mud flap. They wrap it over there bumper, which is usually plastic. So as they parallel park, if they bump the car around them it doesn't mark up their plastic bumper. Not something you see in Ohio. We always find and see interesting things on our daily walks. The other day we found a grocery store called "Eataly." The owner or founded is some famous chef on the cooking channel. So the store was packed full of all kinds of tasty goodies that you don't see at you normal grocery store. We have also made our way down to a park on the Hudson River. There were a couple of tiny 100', 10 million dollar yachts. Not something that I see on a daily basis on Lake Erie. You would think that a 10 million dollar yachts would come with all the bells and whistles. I didn't see any fishing rod holders or fishing nets on these boats. How are you supposed to enjoy yourself without these basic needed accessories? I also have had time to keep up with Drew Carey on the Price is Right, the stuff that dreams are made of. I have been sporting the chemo chrome dome for about the last 3 weeks, which is really no big deal for a guy. I am normally seen out and about with a 5 o'clock shadow due to my dislike for shaving. In the past, after undergoing the heavy duty chemo, I get about a 3 week window where I don't have to worry about any shaving, which I really enjoy. So I hope that you and your loved ones continue to enjoy the summer months. Don't put off the cook outs or Family outing, because the summer will be over before you know it. All of your support has been nothing short of amazing and often brings a tear to my eye. All the benefits have raised nothing short of a small fortune. Plus the donations on the web site continue to come in. Before and during cancer, I always enjoy giving to a worthy organization or individual in need. It really is the best use of money. Due to all your help in many different ways, all I have to do is listen to the medical staff and enjoy the ride. Not having to worry about a great deal of things due to everyone's generouity!!! So that is all I have to share with you this week. Look forward to spending a few minutes with you next week! Jeff
