Wednesday, November 15, 2006
Here is a guy with a blog on Multiple Myeloma
This guy, Lance, contacted me early along when he was getting diagnosed. His blog is a good read. He is really giving some insight into what going through this is like. He doesn't update his blog very often, but when he does it is very interesting reading. Click here to see his blog
Tuesday, May 30, 2006
Hitting the ground running
I did start working out regularly. In fact, I've only missed a few days in the past two and a half weeks. I do mostly a lot of intense work on the orbital walker (30 - 45 minutes at 140 strides per minute) to get my heart rate up for a while. Then I do a good bit of stretching before some very light work with barbells and weight machines. My weight is back to where it was before I started on treatment last September. My clothes fit again! My stamina has really improved and I feel well again.
Today is my first day back in the office. I left home extra early to get to the gym early enough to get my workout and stretching taken care of first. The hourlong commute was a snap without any traffic holdups at all. Already this afternoon, I will be having important meetings. Amazing, huh?
Let's see how well the day goes and how much energy I really have left at the end of the day. Wish me luck!
Today is my first day back in the office. I left home extra early to get to the gym early enough to get my workout and stretching taken care of first. The hourlong commute was a snap without any traffic holdups at all. Already this afternoon, I will be having important meetings. Amazing, huh?
Let's see how well the day goes and how much energy I really have left at the end of the day. Wish me luck!
Tuesday, May 09, 2006
Get Ready! Get Set!
According to all my tests so far, I am having another super speedy recovery. I sure am feeling better.
I suppose a lot of it is because I have kept my expectations pretty conservative. My level of effort has been pretty low too. I have developed extremely high quality couch potato skills! Those are handy when the anti-nausea medicine is working. But now that my overall condition has improved, I have very little nausea. So I am rarely taking that stuff anymore.
No great moves back to the gym yet, but I am thinking tomorrow will be a good day to try.
Thanks to all who send emails and comments!
I suppose a lot of it is because I have kept my expectations pretty conservative. My level of effort has been pretty low too. I have developed extremely high quality couch potato skills! Those are handy when the anti-nausea medicine is working. But now that my overall condition has improved, I have very little nausea. So I am rarely taking that stuff anymore.
No great moves back to the gym yet, but I am thinking tomorrow will be a good day to try.
Thanks to all who send emails and comments!
Tuesday, April 25, 2006
Home is where the heart is.
I made it home. They crossed every "t" and dotted every "i" while I anxiously answerered all their questions and they filled out all their discharge forms in double triplicate. In the end I just had to have my catheter removed -- an easy procedure really -- I mean once the sutures were removed. The first time the doc gave the short sharp pull, the sutures hadn't yet been cut. That caused us all a lot of suprise!
You should have seen the look on the nurses face! The doc had me recline my super-duper 'sit around all day and almost start to enjoy the chair' chair to its almost flat/bed like postion. He had his size six and one half cordovan penny loafer positioned on my chest just to the left (closer to himself) for maximum leverage and the three working end of the catheter -- the connection ports neatly wrapped around his perfectly manicured fingers. He said, 'Just take a deep breath and hold it. Then I will slip the end of the catheter out of the vein right next to your heart."
Unfortunately he hadn't expected that the short sharp pull and the accompanying electric bolt of pain through my chest would cause me to sit bolt upright. That movement threw him onto the lap of my nearest neighbor, a 63 year old school teacher who had until that moment been gently snoring while enjoying the marvelous anti-nausea coctail they'd given her half an hour earlier. I think she only briefly awoke, adjusted her postion and nodded back off again.
Luckily the nurse noticed the sutures and found a way to gently encourage the doc to remove them before re-trying the process. The second time, the thing slipped out before I had even fully filled my lungs.
And now here I am back at home. What a morning! I think I will go and take a nap.
Thanks to all of you who sent emails and comments after yesterday's update. I love the encouragement and witty thoughts.
Keep 'em coming!
You should have seen the look on the nurses face! The doc had me recline my super-duper 'sit around all day and almost start to enjoy the chair' chair to its almost flat/bed like postion. He had his size six and one half cordovan penny loafer positioned on my chest just to the left (closer to himself) for maximum leverage and the three working end of the catheter -- the connection ports neatly wrapped around his perfectly manicured fingers. He said, 'Just take a deep breath and hold it. Then I will slip the end of the catheter out of the vein right next to your heart."
Unfortunately he hadn't expected that the short sharp pull and the accompanying electric bolt of pain through my chest would cause me to sit bolt upright. That movement threw him onto the lap of my nearest neighbor, a 63 year old school teacher who had until that moment been gently snoring while enjoying the marvelous anti-nausea coctail they'd given her half an hour earlier. I think she only briefly awoke, adjusted her postion and nodded back off again.
Luckily the nurse noticed the sutures and found a way to gently encourage the doc to remove them before re-trying the process. The second time, the thing slipped out before I had even fully filled my lungs.
And now here I am back at home. What a morning! I think I will go and take a nap.
Thanks to all of you who sent emails and comments after yesterday's update. I love the encouragement and witty thoughts.
Keep 'em coming!
Monday, April 24, 2006
Maybe tomorrow
My lead oncologist here at the Transplant Center came in a few minutes ago and gave me some real hope. He said that the neupogen shots I have been getting for the past five days in a row should push me over the 1.0 line by tomorrow. That would allow them to release me from the outpatient setting.
He said he was sure I would rather sleep in my own bed and eat from my own refrigerator. I smiled and nodded. He said it was not a promise, but he felt very strongly that my numbers would be where they need to be to get me out of here.
Let's hope! I am pretty run down now. Having had these low counts for over a week has drained a lot of energy out of me. I am sure that getting home will let me rest a lot more peacefully. Oscar and Monika will be there to cheer me up and make me feel loved -- not just cared for as I do here.
Let's hope.
He said he was sure I would rather sleep in my own bed and eat from my own refrigerator. I smiled and nodded. He said it was not a promise, but he felt very strongly that my numbers would be where they need to be to get me out of here.
Let's hope! I am pretty run down now. Having had these low counts for over a week has drained a lot of energy out of me. I am sure that getting home will let me rest a lot more peacefully. Oscar and Monika will be there to cheer me up and make me feel loved -- not just cared for as I do here.
Let's hope.
Monday, April 17, 2006
I have reached Day +4
That means that I got my melphalan / chemotherapy on day "-2" and got my own blood stem cells back on Day "0" and now we've reached "+4" Whoop-dee-do.
Basically, I make sure I get my anti-nausea medicine on time and avoid that trouble. Besides that, we are waiting for my old blood cells to die and my new blood cells to 'engraft' (get to work) and start producing new healthy blood cells again. Right now it is a waiting game and a pretty boring one at that.
Since my system is weak -- a common cold could put me in the hospital (Oh; I'm already in one every day!) -- there is not much I am allowed to do. So I spend most of the day sitting in this chair, studying for my Oracle certification, reading odd internet news. And at lucky times, I get mails from some of you and get to write you a note back.
When I get all my medications lined up just right, I get to sleep the sleep of the time peacefully. At about four-thirty, they ship me back to the apartment and I watch a bit of TV, eat dinner, shower and by ten o'clock I am off to bed. The next day it all starts again. So I am just waiting for the cell counts to fall to zero and then rebound up to new levels.
The normal timeline will get me out of here Sunday or Monday. But there are big risks that I can still get caught with a bad fever or other complications. Anything like that would add days.
All my best to you all ...
Basically, I make sure I get my anti-nausea medicine on time and avoid that trouble. Besides that, we are waiting for my old blood cells to die and my new blood cells to 'engraft' (get to work) and start producing new healthy blood cells again. Right now it is a waiting game and a pretty boring one at that.
Since my system is weak -- a common cold could put me in the hospital (Oh; I'm already in one every day!) -- there is not much I am allowed to do. So I spend most of the day sitting in this chair, studying for my Oracle certification, reading odd internet news. And at lucky times, I get mails from some of you and get to write you a note back.
When I get all my medications lined up just right, I get to sleep the sleep of the time peacefully. At about four-thirty, they ship me back to the apartment and I watch a bit of TV, eat dinner, shower and by ten o'clock I am off to bed. The next day it all starts again. So I am just waiting for the cell counts to fall to zero and then rebound up to new levels.
The normal timeline will get me out of here Sunday or Monday. But there are big risks that I can still get caught with a bad fever or other complications. Anything like that would add days.
All my best to you all ...
Monday, April 10, 2006
Pins & Needles
My health has improved tremendously over the past few weeks. I am probably feeling better than before I first began treatment for multiple myeloma last September. I go for a workout nearly every day. After a week of slowly getting limbered up, I now spend 30 minutes on the squash court doing warm-ups and drills, then forty-five minutes on the orbital walker at one hundred twenty strides per minute or faster. I finish with a few light sets of weights on my arms, shoulders and chest. It is a tiring workout and I am very glad to be able to handle it.
I did go for additional consultation to hear from a third party whether continuing in the trial was likely to be beneficial to me. The answers were uniformly and positively, "Yes!" They opened my eyes to the dangers of allogeneic transplant (using cells from a perfectly matched donor). Basically, the donor cells are likely to continue attacking the host body long after the cancer has been conquered. That commonly causes severe and chronic problems – usually in the lungs, the liver, the skin and the gut. Even so, their recommendation was to go FOR the allogeneic, if it were possible. Autologous transplants have never been shown to produce a cure, only allogeneic have done that. They encouraged me to go for the cure.
They also made me more clearly understand that multiple myeloma is a really dangerous cancer and that it kills people. It was a tough message to hear. I left there really shaken and upset. And I waited on pins and needles to get the results of my brothers' tests. Two weeks later I found out that neither test turned out to be a perfect match. And I am glad I did not have to face the decision to continue down that track.
I still have my doubts and fears, but tomorrow (April 11th, 2006) I start my second autologous blood stem cell transplant.
My doubts area based on medical journal articles. My fears (mostly) are based on my experience going through transplant in February.
My tests last week were completely negative for multiple myeloma. I am in remission. That is great news! So why do a second transplant? The journal articles seem to say that there is less likely to be additional benefit to a patient who has had a successful first transplant. The doctors all say that there is a likelihood that some cancerous cells remained after the first chemotherapy. Doing a second cycle increases the chances that nearly all will be killed -- prolonging my remission even further.
When I went in for my first transplant, I was energized and curious to discover the experience of chemotherapy and the transplant. Now that I know what it is and that they plan to repeat it exactly as before, I dread it. The nausea, the lack of energy, the smells and all the repetitive blood, temperature, weight, 'output volume', pulse rate checking, re-checking and then one more time checking ... What I mean is: Now that I know what it is, I do not want to do it again. I really do not.
There are particular moments that are very unpleasant. Writing them out here will only make my thoughts of them worse for me tomorrow, so I am not going to do that right now; maybe later.
The team there at Hackensack University Medical Center will do their best to make sure I come through this as well as last time. I expect that I will be able to endure and the two weeks I will be there will pass by in a flash. Then I can recuperate quickly and re-start my work and regular life again.
I am ready to get this all behind me. I am going to miss Easter at home, so once I get back home and feel up to it, I will cook a special brunch with the menu I would have made -- my Grandmother's traditional Easter dinner: home made polish sausage, baked ham, carrot jello, shrimp salad, hard boiled eggs, rolls with butter and a lamb cake. Yummy!
>>>> Please do write comments, they come straight to my email account!
>>>> I would really like to hear from you.
I did go for additional consultation to hear from a third party whether continuing in the trial was likely to be beneficial to me. The answers were uniformly and positively, "Yes!" They opened my eyes to the dangers of allogeneic transplant (using cells from a perfectly matched donor). Basically, the donor cells are likely to continue attacking the host body long after the cancer has been conquered. That commonly causes severe and chronic problems – usually in the lungs, the liver, the skin and the gut. Even so, their recommendation was to go FOR the allogeneic, if it were possible. Autologous transplants have never been shown to produce a cure, only allogeneic have done that. They encouraged me to go for the cure.
They also made me more clearly understand that multiple myeloma is a really dangerous cancer and that it kills people. It was a tough message to hear. I left there really shaken and upset. And I waited on pins and needles to get the results of my brothers' tests. Two weeks later I found out that neither test turned out to be a perfect match. And I am glad I did not have to face the decision to continue down that track.
I still have my doubts and fears, but tomorrow (April 11th, 2006) I start my second autologous blood stem cell transplant.
My doubts area based on medical journal articles. My fears (mostly) are based on my experience going through transplant in February.
My tests last week were completely negative for multiple myeloma. I am in remission. That is great news! So why do a second transplant? The journal articles seem to say that there is less likely to be additional benefit to a patient who has had a successful first transplant. The doctors all say that there is a likelihood that some cancerous cells remained after the first chemotherapy. Doing a second cycle increases the chances that nearly all will be killed -- prolonging my remission even further.
When I went in for my first transplant, I was energized and curious to discover the experience of chemotherapy and the transplant. Now that I know what it is and that they plan to repeat it exactly as before, I dread it. The nausea, the lack of energy, the smells and all the repetitive blood, temperature, weight, 'output volume', pulse rate checking, re-checking and then one more time checking ... What I mean is: Now that I know what it is, I do not want to do it again. I really do not.
There are particular moments that are very unpleasant. Writing them out here will only make my thoughts of them worse for me tomorrow, so I am not going to do that right now; maybe later.
The team there at Hackensack University Medical Center will do their best to make sure I come through this as well as last time. I expect that I will be able to endure and the two weeks I will be there will pass by in a flash. Then I can recuperate quickly and re-start my work and regular life again.
I am ready to get this all behind me. I am going to miss Easter at home, so once I get back home and feel up to it, I will cook a special brunch with the menu I would have made -- my Grandmother's traditional Easter dinner: home made polish sausage, baked ham, carrot jello, shrimp salad, hard boiled eggs, rolls with butter and a lamb cake. Yummy!
>>>> Please do write comments, they come straight to my email account!
>>>> I would really like to hear from you.
Tuesday, March 07, 2006
Getting back to good health -- a note from home
The nausea never did go away, but I did learn to take my medication regularly and to ask for more when I needed it.
My counts came up very quickly and the nurses and doctors let me go home on President's Day -- the 20th of February. So I have been home for 2 weeks now. The first 10 days were kind of tough. I could not get over the nausea, and I did not have the advantage of intravenous (quick acting and really powerful) anti-nausea medicine. I tried for the first few days to just ignore it -- distracting myself with cable television and sleep. That did not work and I was becoming more and more miserable. Then I started taking ativan tablets which did help a lot, but to keep the nausea away I had to sleep most of the time. I asked for different meds and tried three before finding a set that worked without knocking me out.
Late last week, I quit taking the anti-nausea drugs and now only take a medicine that keeps my stomach acid level low. As long as I eat good food in small portions, I am doing just fine. Overall in fact, I am feeling really good.
I do not have a tremendous amount of energy. I can go out for an hour long walk or a couple hours of light errands -- grocery shopping, post office, bank and so on -- then I get tired and head home. I am becoming a terrible couch potato, but that is about what I have energy for right now. People who talk with me on the phone have said I sound really healthy again and that makes me feel good. I am sure that the more active I am, the sooner I will get back to full strength.
The hard thing for me to keep in mind is that I no longer have my old immune system. That died on the seventh of February. All my body's 'memory' of chicken pox, mumps, and all the colds and fevers it learned throughout my life are gone. So I have to keep that in mind. If I get sick, it will be more serious and take longer to recover than it used to just a few months ago. A year after my transplant, they will offer me the inoculations against the childhood diseases again. Until then I just have to be careful!
Next steps
My transplant team has advised me to undergo another transplant. It would be either from my own cells or from one of my two brothers. We are all being tested for tissue compatibility and will have results in a week or so. Whichever I would get would mean another session in the hospital and another tough recovery. But my doctors have told me that they feel I came through the first transplant so well (I didn't see any of them puking!). So they feel that I really ought to treat the cancer as aggressively as possible right now.
It is tough to think about and either path. Both have lots of considerations and complications. I will try to post a bit more regularly to keep you in the picture.
Please Note
Comments posted here get sent to me via email!
My counts came up very quickly and the nurses and doctors let me go home on President's Day -- the 20th of February. So I have been home for 2 weeks now. The first 10 days were kind of tough. I could not get over the nausea, and I did not have the advantage of intravenous (quick acting and really powerful) anti-nausea medicine. I tried for the first few days to just ignore it -- distracting myself with cable television and sleep. That did not work and I was becoming more and more miserable. Then I started taking ativan tablets which did help a lot, but to keep the nausea away I had to sleep most of the time. I asked for different meds and tried three before finding a set that worked without knocking me out.
Late last week, I quit taking the anti-nausea drugs and now only take a medicine that keeps my stomach acid level low. As long as I eat good food in small portions, I am doing just fine. Overall in fact, I am feeling really good.
I do not have a tremendous amount of energy. I can go out for an hour long walk or a couple hours of light errands -- grocery shopping, post office, bank and so on -- then I get tired and head home. I am becoming a terrible couch potato, but that is about what I have energy for right now. People who talk with me on the phone have said I sound really healthy again and that makes me feel good. I am sure that the more active I am, the sooner I will get back to full strength.
The hard thing for me to keep in mind is that I no longer have my old immune system. That died on the seventh of February. All my body's 'memory' of chicken pox, mumps, and all the colds and fevers it learned throughout my life are gone. So I have to keep that in mind. If I get sick, it will be more serious and take longer to recover than it used to just a few months ago. A year after my transplant, they will offer me the inoculations against the childhood diseases again. Until then I just have to be careful!
Next steps
My transplant team has advised me to undergo another transplant. It would be either from my own cells or from one of my two brothers. We are all being tested for tissue compatibility and will have results in a week or so. Whichever I would get would mean another session in the hospital and another tough recovery. But my doctors have told me that they feel I came through the first transplant so well (I didn't see any of them puking!). So they feel that I really ought to treat the cancer as aggressively as possible right now.
It is tough to think about and either path. Both have lots of considerations and complications. I will try to post a bit more regularly to keep you in the picture.
Please Note
Comments posted here get sent to me via email!
Friday, February 10, 2006
Melphalan is a real ass-kicker
I got an hour of a drug called melphalan on Monday. They prepped me with anti-nausea medicine and that buffered me for the beginning. But later though the day the waves of nausea just kept coming. So I took pills and got injections though my catheter. The weasiness was like being in a boat -- a tiny row boat that wobbles from side to side and had trouble keeping stable. I was feeling like my stomach had gone off for a ride on a roller coaster and was just sending me the feelings of the ups and downs. Yuck!
I have been trying to hang on to a steady middle of the road. And the only way to doo that for some big pieces of the day is to go to sleep. It's a bummer, but it is a well expected side effect of the melphalan. And it will continue until my blood cel counts fall down to really low levels. At that point, I am suppposed to have so little energy, that nausea will be beyond my reach. I will basically be a lump.
Today, I just messed up and didn't keep the anti-nausea meds at a sufficient level, so I was puking into a bucket midday. The nurse came over and hit me with the atavan right away and that allowed me to put a lid on it and crash out gain. Thank goodness. I just have to hang on until the counts drop. Supposedly the nausea fades then.
But there is nothing to do until we get to those days.
Yesterday I received my own blood stem cells back. That was day '0' and today is day '1'. By day 10, I should be recovered to a level that will let me go home. All I can say is that I hope that all works out. Today I just want to rest and avoid pukking again.
.. that's it for now..
I have been trying to hang on to a steady middle of the road. And the only way to doo that for some big pieces of the day is to go to sleep. It's a bummer, but it is a well expected side effect of the melphalan. And it will continue until my blood cel counts fall down to really low levels. At that point, I am suppposed to have so little energy, that nausea will be beyond my reach. I will basically be a lump.
Today, I just messed up and didn't keep the anti-nausea meds at a sufficient level, so I was puking into a bucket midday. The nurse came over and hit me with the atavan right away and that allowed me to put a lid on it and crash out gain. Thank goodness. I just have to hang on until the counts drop. Supposedly the nausea fades then.
But there is nothing to do until we get to those days.
Yesterday I received my own blood stem cells back. That was day '0' and today is day '1'. By day 10, I should be recovered to a level that will let me go home. All I can say is that I hope that all works out. Today I just want to rest and avoid pukking again.
.. that's it for now..
Monday, February 06, 2006
Another biopsy
My transplant team needs to know the present status of the cancer. So this morning I went back to Robert Wood Johnson hospital for another biopsy of the bone marrow of my sacrum.
No big deal .. they give me a little local anesthetic and then stick a ten inch (no that is not an exaggeration -- it is really that long, though they only put it into me about 3 inches) needle into the bone at the base of my spine. Then they take some samples of the bone marrow for testing.
It really is not a big deal procedure. Since the topical anesthetic is so effective, I really did not feel much of anything. Well, that was until the surgeon managed to find my sciatic nerve with the tip of the needle. Then a bolt of white lightning shot down my hip all the way to my heel. What a Shot! And without any control at all, my leg jerked and I was immediately afraid I might have caused the surgeon to cause some damage to my nerves or spine. So far as I can tell, nothing happened other than the momentary pinch. They seemed to need to take several samples, but other than the nerve shot, it went easier than the one I did last September.
They are looking for the cancerous blood plasma cells. The test results will be a tracking point for us to compare with the earlier bone biopsy -- the one that was used to determine that I had multiple myeloma in the first place.
On Another Topic
My admission to HUMC has been delayed due to a missing final approval from the insurance company. Actually everything is all complete, but since there is a chance I will join the trial / study they need to re-review the documents to be certain coverage would be available. It could cause a problem if I was already receiving treatment before all approvals were in place.
.. catch ya later ..
No big deal .. they give me a little local anesthetic and then stick a ten inch (no that is not an exaggeration -- it is really that long, though they only put it into me about 3 inches) needle into the bone at the base of my spine. Then they take some samples of the bone marrow for testing.
It really is not a big deal procedure. Since the topical anesthetic is so effective, I really did not feel much of anything. Well, that was until the surgeon managed to find my sciatic nerve with the tip of the needle. Then a bolt of white lightning shot down my hip all the way to my heel. What a Shot! And without any control at all, my leg jerked and I was immediately afraid I might have caused the surgeon to cause some damage to my nerves or spine. So far as I can tell, nothing happened other than the momentary pinch. They seemed to need to take several samples, but other than the nerve shot, it went easier than the one I did last September.
They are looking for the cancerous blood plasma cells. The test results will be a tracking point for us to compare with the earlier bone biopsy -- the one that was used to determine that I had multiple myeloma in the first place.
On Another Topic
My admission to HUMC has been delayed due to a missing final approval from the insurance company. Actually everything is all complete, but since there is a chance I will join the trial / study they need to re-review the documents to be certain coverage would be available. It could cause a problem if I was already receiving treatment before all approvals were in place.
.. catch ya later ..
Wednesday, February 01, 2006
Free Offer! You Qualify for the Trial / Study Now Underway!!!
The research coordinator at HUMC brought me a pack of documents. They describe an experiment that is being done to discover more about treating multiple myeloma. She said that there is a team at HUMC who have joined the experiment and would like me to be one of the patients.
WoW! Should I feel lucky? I do not know. Did the various parts of Frankenstein feel lucky before the experiment started? Gee; I wonder!
Here is a link to information about the experiment. [Oh, I know they call it a 'Study/Trial', but that is just fancy words for 'experiment']
National Cancer Institute Study Information Page
WoW! Should I feel lucky? I do not know. Did the various parts of Frankenstein feel lucky before the experiment started? Gee; I wonder!
Here is a link to information about the experiment. [Oh, I know they call it a 'Study/Trial', but that is just fancy words for 'experiment']
National Cancer Institute Study Information Page
Saturday, January 28, 2006
20 Million Cells Delivered!
Monday I went through apherisis. It means processing my blood through a centrifuge and taking out the layer that contains blood stem cells. The goal of the team is to pass the entire five liter volume of my body’s blood through the machine about four times -- or in other words to reach a goal of twenty liters. The goal for cell collection is twelve million. That is enough for two transplants plus a buffer of two million.
The day started early. HUMC is an hour north of home, so I left at six-thirty allowing for rush hour traffic. My appointment was at eight o'clock. After the usual height, weight, blood pressure, temperature and pulse rate checks, I went in to the labs where one of the regular vampires nabbed breakfast snack of two or three tubes. Well, okay: They needed a baseline to know my condition before starting.
When the results came back, it was clear that I was in good shape. My white blood cell count was over sixty two thousand. I was told that I would be finally released from treatment after the transplant when I returned to ten thousand. Sixty two is a very good level.
Then they sent me to the Apherisis room. There was a LOT of paperwork to process: consent forms, treatment plans, prescriptions, doctor's orders, protocols, Health Information Patient Privacy Act - HIPPA release forms, and even more. There was a blizzard of paper moving around that small four bed/apherisis machine procedure room. But since I was first, most of the two nurses’ attention was on me.
Each bed had its own pumping station. The pumping station itself is about the size of small desk. The top part has poles with arms held straight up for holding intravenous bags. Clear plastic bags held plain water (saline solution) and another with blood thinner. They didn't want to risk clogging their fancy machine with my muddy blood. The front of the box was decorated with dials having various markings and the face panel had colored stripes with arrows illustrating the flow pattern. Then clear tubing ran through clamps into the rollers above the stripes and there was a fancy two way in/out connector at the end for me. It looked fairly complicated, but it also looked kind of primitive. It had painted words next to the colored lines telling the user which tubes to put where and some clear warnings too. It made me wonder how much training was required before a person was allowed to operate it – if so much instruction had to be painted on the front of the thing. No matter – by ten o'clock I was hooked up and I could see my blood flowing through the tubing.
Everything was hunky-dorey until we found out my catheter was temperamental. They said it was ‘positional’ and I interrupted the flow every time I moved, or breathed! Every time I took a deep breath the machine lost flow, an alarm sounded and the pumps stopped. So moving and breathing were going to have to be stopped! When the director of Apherisis came to check up on progress, one nurse told her, “Mr. Kirk is ‘positional’.” It came out like a slur on my character. So I worked harder to maintain my special position – lying still, flat on my back with my head as far left as I could manage to hold it, breathing shallow. Fortunately, each bed has a mini television on a very easy to position jointed arm that allowed me to lower the set to eye level. I got an ear plug so as not to disturb others.
The nurses, thank goodness, had no earplug because they had to listen for the alarm then run over every time I forgot my restrictions and took a deep breath. How Could I Be So Stupid?!? OH! MY! GOODNESS!
Actually it was really quite a hassle because it happened thirty or forty times. Fortunately, the two nurses quite understood and took it in stride. It was not just an inconvenience to the nurses. It was an interruption in the flow and did stop progress of the collection. After four hours we had reached just seventy five percent of the volume goal. Only fifteen liters had been processed. By then, it was already two o’clock in the afternoon. Other patients needed the bed and the machine, so I was disconnected. I was, after all, expected to be coming for as long as five days if the collection needed that long. However, I was not looking forward to attempting to lay nearly motionless, keeping my breathing shallow and being able to little else but watch daytime television for even one more day! Too bad – my desires had little to do with anything. We needed to collect at least twelve million blood stem cells for my treatment to proceed.
So after I got disconnected, a few tubes of my blood were sent off to the lab to determine how well I had fared on a physiological level. They showed I had a white blood cell count of forty two thousand. That was nearly a third lower and definitely a lower level of resistance against infection. Still, I felt fine and I started hoping I would manage a full twenty liters on Tuesday. Then they sent me home.
My entire collection (you may be curious to know that the actual volume of blood they took away was just about 220 ml – about half the volume a regular blood donor gives when they donate whole blood) would be sent to the lab for evaluation and an estimate of the progress toward the goal of twelve million blood stem cells would be done overnight. I went home a bit frustrated, but satisfied that the process had begun. Results would be known before we started the next morning.
When I returned the next morning, I had to get weighed, measured and do blood tests to check my starting levels. Then I sat and waited in the lounge for the nurses to arrive. After about twenty minutes, the friendly folks at reception caught my attention and whispered, “You are done! You collected twenty million yesterday. You can go home!”
WOW!
After all that trouble just to deliver seventy five percent of the volume, the collection came in nearly double the goal! I am really proud that my body was in good enough condition to produce so well. And I did not have to endure another day of that process!
Coming Attractions
The next phase starts the 7th of February. That is the day I go back to HUMC for the transplant. That means one day of chemo -- the death of my bone marrow, then the "Rescue" --the return of five million of my own blood stem cells one day after the chemo. Then we watch my white blood cell counts every day. Somewhere between days six and eight, my counts will drop. They will continue dropping as cells that were adult on the day of chemo finish their normal life span. My counts may approach zero and I will have lower and lower resistance to infection. Without having received the Rescue, my immune system would be permanently disabled. As the numbers are reported, we watch for signs that the transplanted cells have 'engrafted' and are living normal lives. That is signaled by a rise in white blood cell counts. Once I return to at least ten thousand they will send me home. Though risk of infection will be very real, the 'standard of care' has resulted in the best recovery results when the patient is at home.
... and I guess that's all I know about that
The day started early. HUMC is an hour north of home, so I left at six-thirty allowing for rush hour traffic. My appointment was at eight o'clock. After the usual height, weight, blood pressure, temperature and pulse rate checks, I went in to the labs where one of the regular vampires nabbed breakfast snack of two or three tubes. Well, okay: They needed a baseline to know my condition before starting.
When the results came back, it was clear that I was in good shape. My white blood cell count was over sixty two thousand. I was told that I would be finally released from treatment after the transplant when I returned to ten thousand. Sixty two is a very good level.
Then they sent me to the Apherisis room. There was a LOT of paperwork to process: consent forms, treatment plans, prescriptions, doctor's orders, protocols, Health Information Patient Privacy Act - HIPPA release forms, and even more. There was a blizzard of paper moving around that small four bed/apherisis machine procedure room. But since I was first, most of the two nurses’ attention was on me.
Each bed had its own pumping station. The pumping station itself is about the size of small desk. The top part has poles with arms held straight up for holding intravenous bags. Clear plastic bags held plain water (saline solution) and another with blood thinner. They didn't want to risk clogging their fancy machine with my muddy blood. The front of the box was decorated with dials having various markings and the face panel had colored stripes with arrows illustrating the flow pattern. Then clear tubing ran through clamps into the rollers above the stripes and there was a fancy two way in/out connector at the end for me. It looked fairly complicated, but it also looked kind of primitive. It had painted words next to the colored lines telling the user which tubes to put where and some clear warnings too. It made me wonder how much training was required before a person was allowed to operate it – if so much instruction had to be painted on the front of the thing. No matter – by ten o'clock I was hooked up and I could see my blood flowing through the tubing.
Everything was hunky-dorey until we found out my catheter was temperamental. They said it was ‘positional’ and I interrupted the flow every time I moved, or breathed! Every time I took a deep breath the machine lost flow, an alarm sounded and the pumps stopped. So moving and breathing were going to have to be stopped! When the director of Apherisis came to check up on progress, one nurse told her, “Mr. Kirk is ‘positional’.” It came out like a slur on my character. So I worked harder to maintain my special position – lying still, flat on my back with my head as far left as I could manage to hold it, breathing shallow. Fortunately, each bed has a mini television on a very easy to position jointed arm that allowed me to lower the set to eye level. I got an ear plug so as not to disturb others.
The nurses, thank goodness, had no earplug because they had to listen for the alarm then run over every time I forgot my restrictions and took a deep breath. How Could I Be So Stupid?!? OH! MY! GOODNESS!
Actually it was really quite a hassle because it happened thirty or forty times. Fortunately, the two nurses quite understood and took it in stride. It was not just an inconvenience to the nurses. It was an interruption in the flow and did stop progress of the collection. After four hours we had reached just seventy five percent of the volume goal. Only fifteen liters had been processed. By then, it was already two o’clock in the afternoon. Other patients needed the bed and the machine, so I was disconnected. I was, after all, expected to be coming for as long as five days if the collection needed that long. However, I was not looking forward to attempting to lay nearly motionless, keeping my breathing shallow and being able to little else but watch daytime television for even one more day! Too bad – my desires had little to do with anything. We needed to collect at least twelve million blood stem cells for my treatment to proceed.
So after I got disconnected, a few tubes of my blood were sent off to the lab to determine how well I had fared on a physiological level. They showed I had a white blood cell count of forty two thousand. That was nearly a third lower and definitely a lower level of resistance against infection. Still, I felt fine and I started hoping I would manage a full twenty liters on Tuesday. Then they sent me home.
My entire collection (you may be curious to know that the actual volume of blood they took away was just about 220 ml – about half the volume a regular blood donor gives when they donate whole blood) would be sent to the lab for evaluation and an estimate of the progress toward the goal of twelve million blood stem cells would be done overnight. I went home a bit frustrated, but satisfied that the process had begun. Results would be known before we started the next morning.
When I returned the next morning, I had to get weighed, measured and do blood tests to check my starting levels. Then I sat and waited in the lounge for the nurses to arrive. After about twenty minutes, the friendly folks at reception caught my attention and whispered, “You are done! You collected twenty million yesterday. You can go home!”
WOW!
After all that trouble just to deliver seventy five percent of the volume, the collection came in nearly double the goal! I am really proud that my body was in good enough condition to produce so well. And I did not have to endure another day of that process!
Coming Attractions
The next phase starts the 7th of February. That is the day I go back to HUMC for the transplant. That means one day of chemo -- the death of my bone marrow, then the "Rescue" --the return of five million of my own blood stem cells one day after the chemo. Then we watch my white blood cell counts every day. Somewhere between days six and eight, my counts will drop. They will continue dropping as cells that were adult on the day of chemo finish their normal life span. My counts may approach zero and I will have lower and lower resistance to infection. Without having received the Rescue, my immune system would be permanently disabled. As the numbers are reported, we watch for signs that the transplanted cells have 'engrafted' and are living normal lives. That is signaled by a rise in white blood cell counts. Once I return to at least ten thousand they will send me home. Though risk of infection will be very real, the 'standard of care' has resulted in the best recovery results when the patient is at home.
... and I guess that's all I know about that
Wednesday, January 25, 2006
Chemo Done & Out of the hospital
Quick 'catch up' since I was in the hospital --
The chemo therapy did take all 96 hours. It ended on Friday night about ten-thirty. I was pretty run down by then. Actually from the beginning of the week to the end, I was getting more and more slow and had less and less energy. Between the effects of the drugs and the boredom of not beinng able to do too much besides lay around in bed -- I was getting pretty slow and my energy level was falling down to a pretty low level.
The food was always good at this hospital. They put a menu next to the bed and I could order three times a day. Whatever I ordered came within forty-five minutes. Just like delivery pizza. That was on the menu too -- Pizza! (pepperoni, sausage or plain cheese). The selection was really wide and everything was tasty. I got into kind of a rut ordering lots of vegetables every day. The gave great big portions of spinach, carrots and green beans. So I went for those nearly every lunch and supper.
Besides watching TV, reading, telephone calls and meals -- there was not much to do. I was allowed to take my intravenous 'tree' power cord out of the outlet, let it run on batteries (the same way I get to go to the bathroom) and go for a walk around the building. But I was not allowed to leave the floor. So all I could do was walk around the building past the rooms of all the other patients. It was a big square and it seemed like every room was full. So the nursing team was really busy. They had to check on me at least three times a day. They took my temperature, blood pressure, heart rate and pulse rate. I was not allowed to pee in the toilet since they had to be sure I was processing enough fluids. The chemo will damage kidneys if left in the body for very long. So I had to pee into a container and they had to write down the amount before dumping it out. That is nasty!
As far as I can tell from the blood tests my white and red blood cell counts never fell to the low levels they expected. Who knows why? Here is an explanation of the process that I was able to get from a very experienced nurse coordinator who has supported, according to her own account, over a hundred transplant patients:
On Saturday morning, I did get released. I was given another dose of anti-nausea medicine intraveneously -- thank goodness! It is such a nasty side-effect of those drugs that they made me feel like I was going to toss my cookies every once in a while. But all I had to do was push that little red button, ask for anti-nausea medicine and Poof! in came the RN with a teensy-teensy clear plastic bag of whatever-t-was. In just a few minutes the feeling was gone. Great Stuff! I also got a prescription for the same thing in tablet form that we filled before we went home. Luckily we did, because I needed it Saturday night at home.
Saturday and Sunday were pretty much a waste. I was stuck in bed most of the time: no energy, a bit nauseous, really low energy -- just taking it slow.
By Monday I was doing better. By Wednesday, I was out and about doing regular things.
Next Blog -- Blood Stem Cell Collection: I set a new land speed record!
The chemo therapy did take all 96 hours. It ended on Friday night about ten-thirty. I was pretty run down by then. Actually from the beginning of the week to the end, I was getting more and more slow and had less and less energy. Between the effects of the drugs and the boredom of not beinng able to do too much besides lay around in bed -- I was getting pretty slow and my energy level was falling down to a pretty low level.
The food was always good at this hospital. They put a menu next to the bed and I could order three times a day. Whatever I ordered came within forty-five minutes. Just like delivery pizza. That was on the menu too -- Pizza! (pepperoni, sausage or plain cheese). The selection was really wide and everything was tasty. I got into kind of a rut ordering lots of vegetables every day. The gave great big portions of spinach, carrots and green beans. So I went for those nearly every lunch and supper.
Besides watching TV, reading, telephone calls and meals -- there was not much to do. I was allowed to take my intravenous 'tree' power cord out of the outlet, let it run on batteries (the same way I get to go to the bathroom) and go for a walk around the building. But I was not allowed to leave the floor. So all I could do was walk around the building past the rooms of all the other patients. It was a big square and it seemed like every room was full. So the nursing team was really busy. They had to check on me at least three times a day. They took my temperature, blood pressure, heart rate and pulse rate. I was not allowed to pee in the toilet since they had to be sure I was processing enough fluids. The chemo will damage kidneys if left in the body for very long. So I had to pee into a container and they had to write down the amount before dumping it out. That is nasty!
As far as I can tell from the blood tests my white and red blood cell counts never fell to the low levels they expected. Who knows why? Here is an explanation of the process that I was able to get from a very experienced nurse coordinator who has supported, according to her own account, over a hundred transplant patients:
- First of all, the CDEP therapy works in the body to interfere with cells as they divide -- during the cell creation process. Secondly, it does not kill existing adult cells. Blood cells have a normal lifespan from seven to ten days in length (Mark: well, that is not what other documents say, but let's just roll on for now) and those two processes together cause a gap to appear in the patient's immune defenses. As the adult cells die, the number in the body if mapped on a grid would glide downward to zero. The cell creation process, on the same grid would start at zero and climb upwards. In most patients, the upward climbing line is gradual. Depending on how steep the down line is and the starting point of the upward line, there may be a period of time when the line stays at zero. At least, the patient has a period of time during which their immune system is at a low level and recovering at a moderate pace. That is not true for all patients, but it is normal.
On Saturday morning, I did get released. I was given another dose of anti-nausea medicine intraveneously -- thank goodness! It is such a nasty side-effect of those drugs that they made me feel like I was going to toss my cookies every once in a while. But all I had to do was push that little red button, ask for anti-nausea medicine and Poof! in came the RN with a teensy-teensy clear plastic bag of whatever-t-was. In just a few minutes the feeling was gone. Great Stuff! I also got a prescription for the same thing in tablet form that we filled before we went home. Luckily we did, because I needed it Saturday night at home.
Saturday and Sunday were pretty much a waste. I was stuck in bed most of the time: no energy, a bit nauseous, really low energy -- just taking it slow.
By Monday I was doing better. By Wednesday, I was out and about doing regular things.
Next Blog -- Blood Stem Cell Collection: I set a new land speed record!
Thursday, January 12, 2006
Blood counts refuse to fall - Catheter placed
After two and a half days of CDEP (cyclophosphamide, dexamethasone, etoposide, cisplatin) chemotherapy my blood results show no real changes. So my body is resisting the attack of these powerful drugs. My oncologist came through this morning at about six-thirty. He assured me they would take effect soon enough.
I remain aggravated that my oncologist told me I would be in this hospital four days. First he forgot to arrange my admission. I had to get his partner on call late Sunday night to make a call to the hospital. And I arrived ontime as requested. What he neglected to explain is that the drug therapy requires ninety-six continuous hours.
That makes it IMPOSSIBLE to leave the hospital in four days. As it now stands, I will get disconnected from the fourth twenty-four chemo-cocktail at about ten o’clock in the evening FRIDAY. He said that once the fatigue that will be caused by the therapy has taken effect, I will be evaluated and my ability and the timing of my discharge will be determined. So MAYBE Saturday or Sunday I can go home.
On Tuesday, I got my central venous catheter. It will be used during the harvest and transplant for high volume flows. The tube goes into my chest just below my collar bone. As it comes out, it is bent over and runs under my skin a bit. Then the tail hangs down my side just in front of my right arm. It has two lumens or tails – one red and one blue. They had to do the placement of the catheter now before my platelet count falls -- an expected consequence of the CDEP. Those are the parts of the blood that clot. So they had to do the surgery while I could stop bleeding after the procedure.
A quick review of a mix up in the operating room:
I was taken to the operating room an hour early. They had an open room. My surgeon and the supply clerk were discussing the selection of catheters available. The size specified by my oncologist at HUMC was not there. My surgeon called to HUMC and asked if a smaller one could be used. The response was; delay the remainder of the chemo if necessary to forestall the drop in platelet count – even a month if needed – use the right one or do nothing. My surgeon came to tell me this and I told him that I would be really struggling to make a change of a month in my schedule.
I have already interrupted my work and set a lot of wheels in motion to support my absence now and stretch as long as four months. My mother-in-law is coming to stay with us starting on the twenty-first of January. My mother has plane tickets to stay with me for the month of in/outpatient care at HUMC starting on the fourth of March. Her main working time culminates on the fifteenth of April on tax day. A delay would throw a monkey wrench in a lot of plans. The surgeon said that since I was apparently overhearing part of the conversation, he wanted me to have a clear picture of what information he had so far.
After a few more trips to the supply room, the supply clerk was able to find the correct device and the surgery went ahead full speed.
There was some stiffness and I took pain pills Tuesday night. But my Wednesday morning, I was not in pain just stiff. And today, Thursday, I have just itchiness around the tape they used to hold the bandages. My nurse said she will come and change the dressing today and I hope to get a look at this thing sticking out of my chest.
I remain aggravated that my oncologist told me I would be in this hospital four days. First he forgot to arrange my admission. I had to get his partner on call late Sunday night to make a call to the hospital. And I arrived ontime as requested. What he neglected to explain is that the drug therapy requires ninety-six continuous hours.
That makes it IMPOSSIBLE to leave the hospital in four days. As it now stands, I will get disconnected from the fourth twenty-four chemo-cocktail at about ten o’clock in the evening FRIDAY. He said that once the fatigue that will be caused by the therapy has taken effect, I will be evaluated and my ability and the timing of my discharge will be determined. So MAYBE Saturday or Sunday I can go home.
On Tuesday, I got my central venous catheter. It will be used during the harvest and transplant for high volume flows. The tube goes into my chest just below my collar bone. As it comes out, it is bent over and runs under my skin a bit. Then the tail hangs down my side just in front of my right arm. It has two lumens or tails – one red and one blue. They had to do the placement of the catheter now before my platelet count falls -- an expected consequence of the CDEP. Those are the parts of the blood that clot. So they had to do the surgery while I could stop bleeding after the procedure.
A quick review of a mix up in the operating room:
I was taken to the operating room an hour early. They had an open room. My surgeon and the supply clerk were discussing the selection of catheters available. The size specified by my oncologist at HUMC was not there. My surgeon called to HUMC and asked if a smaller one could be used. The response was; delay the remainder of the chemo if necessary to forestall the drop in platelet count – even a month if needed – use the right one or do nothing. My surgeon came to tell me this and I told him that I would be really struggling to make a change of a month in my schedule.
I have already interrupted my work and set a lot of wheels in motion to support my absence now and stretch as long as four months. My mother-in-law is coming to stay with us starting on the twenty-first of January. My mother has plane tickets to stay with me for the month of in/outpatient care at HUMC starting on the fourth of March. Her main working time culminates on the fifteenth of April on tax day. A delay would throw a monkey wrench in a lot of plans. The surgeon said that since I was apparently overhearing part of the conversation, he wanted me to have a clear picture of what information he had so far.
After a few more trips to the supply room, the supply clerk was able to find the correct device and the surgery went ahead full speed.
There was some stiffness and I took pain pills Tuesday night. But my Wednesday morning, I was not in pain just stiff. And today, Thursday, I have just itchiness around the tape they used to hold the bandages. My nurse said she will come and change the dressing today and I hope to get a look at this thing sticking out of my chest.
Monday, January 09, 2006
Starting Chemotherapy
The therapy is working very much as expected. The test results have been showing consistent reduction in the number of cancerous blood plasma cells. Both oncologists want me to go ahead with an autologous blood cell transplant. That is what we will be doing. Here is a quick overview of the process:
Chemotherapy – This week at Robert Wood Johnson (RWJ) Hospital
Create a ‘trampoline’ effect to stress my system and then have it bounce back and overproduce the blood stem cells we need for a self-transplantation. The complication is that this stress will knock out my body's ability to fight infection.
Regenerate – From Saturday to the 23rd of January at home
Use special drugs to accelerate my body's production of new blood stem cells, then 'harvest' those cells and freeze them for use in the third stage. The added benefit of the regeneration process is that the re-growth of my blood stem cells – the core of my immune system – will help protect me as we get ready for the final stage.
Transplant – the 9th of February at the Hackensack University Medical Center (HUMC)
One day of chemotherapy using one of the most well known drugs in the business. It will wipe out my bone marrow and all the cancer. Kill them all. At least we hope that is what it does.
Then return the harvested cells from the freezer and run them through the intravenous lines and into my body. They will warm up and migrate back to the bone marrow and start multiplying and living inside my body just like they did before. The idea is that the mistake the plasma cells made when they became cancerous will not recur. In other words; bring in fresh raw material and let them grow from scratch. The cancer should not reappear.
Right now I am at RWJ for the first chemotherapy. I checked in this morning. This hospital is just 5 minutes from home. Once the pharmacy brings up my cocktail it will take 96 continuous hours to get the chemotherapy done. Friday night, if I am doing well enough, I will go home.
During the week, there will be some more time and I will do what I can to make this blog a bit more informative & maybe even more interesting.
Until then… I wish you all the best.
Chemotherapy – This week at Robert Wood Johnson (RWJ) Hospital
Create a ‘trampoline’ effect to stress my system and then have it bounce back and overproduce the blood stem cells we need for a self-transplantation. The complication is that this stress will knock out my body's ability to fight infection.
Regenerate – From Saturday to the 23rd of January at home
Use special drugs to accelerate my body's production of new blood stem cells, then 'harvest' those cells and freeze them for use in the third stage. The added benefit of the regeneration process is that the re-growth of my blood stem cells – the core of my immune system – will help protect me as we get ready for the final stage.
Transplant – the 9th of February at the Hackensack University Medical Center (HUMC)
One day of chemotherapy using one of the most well known drugs in the business. It will wipe out my bone marrow and all the cancer. Kill them all. At least we hope that is what it does.
Then return the harvested cells from the freezer and run them through the intravenous lines and into my body. They will warm up and migrate back to the bone marrow and start multiplying and living inside my body just like they did before. The idea is that the mistake the plasma cells made when they became cancerous will not recur. In other words; bring in fresh raw material and let them grow from scratch. The cancer should not reappear.
Right now I am at RWJ for the first chemotherapy. I checked in this morning. This hospital is just 5 minutes from home. Once the pharmacy brings up my cocktail it will take 96 continuous hours to get the chemotherapy done. Friday night, if I am doing well enough, I will go home.
During the week, there will be some more time and I will do what I can to make this blog a bit more informative & maybe even more interesting.
Until then… I wish you all the best.
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