Monday was going to size up to a very busy day.
First on the agenda was an appointment with my transplant hematologist. This is the doctor that is in charge of "curing" me so to speak. After Dr. Barve, my regular hematologist, has pushed the MM/AL into remission, then it the transplant hematologists job to really make me sick so he can fix me. This appointment is strictly a new patient consult so it all about what he does, his experience, more info about my disease and how he plans on fixing it.
The short version is that I need a Stem Cell Transplant (STC). There are two flavors of this procedure, the first is call Autologous and the second is Allotropic.
The autologous SCT, which is what I would require, is where they chemo you until they can get good Stem Cells from your own body. They then harvest these cells, polish 'em up with some turtle wax to get 'em nice and shiny, and then the fun starts. The hit you with bas a$$ chemo and radiation to kill off your existing bad bone marrow. Bad bone marrow, naughty bone marrow!!!!! Why can't they just hit it with a stick? So during this time you have no immune system. Yes the common cold will kill you. Once they've annihilated your marrow, they pump the shiny used stems cells into your body and hopefully in another week or so ... you've got you marrow and immune system back. This sounds pretty simple however go to www.amylodosis.org to see the schedule and details to this procedure. Not so pretty. Plus the con to this procedure is that the MM/AL can come back since the stem cells still have the original code. However, it is a long-term remission plan.
The allotropic SCT is where they find another human match and use those stem cells to regrow your marrow and immune system. Closest thing to a cure they have, but it comes with a potentially big down side. Host Graft Disease, this is where you new immune system rejects your body and begins to fight it off. I little light reading on this subject and you'll stay awake for a few days!! UGH.
Well once this appointment is done I run over to Dr. Barve's office for my first infusion. I get signed in, Alyson shows up, and while we are talking with the doc the subject of children come up and that we still would like to have them. Opps, seems that we've skipped a step. Chemo kills/damages fast dividing cells. I'll let you guys read a biology book and do some research here.
So, no poison in the vein for me today. We reset for tomorrow and I call the bank (use your imagination). I'm able to get an appointment for the next day so everything is going good.
Tuesday: I show up at the address 30 minutes early. One problem though, the address is a parking lot. Well I can honestly say that I'm perplexed at this point. At least I didn't end up in an alley, then I'd really be worried! At this point I've called the phone number on the front of the brochure at least 30 times and it's close enough to lunch time that all I'm getting is voice mail. So instead of having a fight club moment in the parking lot, I see that there is another building associated with the hospital complex close and proceed to try and find someone to give me directions. this is where the funny part comes in to play. I get to the information desk and ask them for the location of the "Human Health and Reproductive Services Department". However the lady sees the brochure I'm carrying and just asks for it. Something to let you know when you get a disease like this ... ego goes out the window for the most part ... so I hand her the brochure titled "Sperm banking for the cancer patient". She looks at me, I smile, she starts dialing ... frantically I might add. While she is doing this one of her co-workers comes up and wants to help. She gets the low-down and glances at the cover of the brochure. She looks at me, I smile and she stands staring at me uncomfortably long enough to attract the interest of their boss who quickly exits her office and repeats this process. So now I've got two women trying very unsuccessfully to start small talk with me while the receptionist is trying to desperately find out where I belong and get me the hell out of there. After about five minutes of this ... the location was found, relayed to me and I imagine they were extremely happy to be rid of me!
The rest of the day involved going back to my hematologist, relaying my humorous story and getting pumped full of poison, on purpose, for the first time ever. It was uneventful, till Thursday rolled around ... and that deserves an entry unto itself!!!
Til then, stay safe!
Wednesday, October 20, 2010
Friday, October 8, 2010
Friday August 6th, 2010
So, as you can see from the last post about July the end of that month was when the diagnosis machine got it's juices flowing.
After having the insides of my pelvis sucked out the doctor figured she wouldn't need to see me again until the 9th of August. That way all the tests and blood work could get back in and be processed. Well shiver me timbers if i don't get a call from my Hematologist asking my to call her immediately on the night of the 3rd. For those of you that don't know ... this is highly unusual. So the doctor and I play several rounds of phone tag in the afternoon of the 4th. Finally we get a hold of each other and she tells me that I have an appointment to see her on the 6th. Another novelty ... not, can you come in?, are you available? ... no flat out you will be in my office on this date at this time .... oh and bring your wife, she needs to be there as well.
So I dutifully tell Alyson what our plans are on the 6th of August.
08/06/2010 - We arrive and the usual poking and prodding is done with needles and needles with lasers and such. Off to the back we go so I can face the music. At this point I'm pretty sure I can name this tune in one for those of you that are old enough to remember that TV show! We get sat in the room and my hematologist comes in with a very serious look on her face. That is inspiring confidence in this diagnosis. Maybe I'm having puppies and she just needs to know what the heck I've been doing? Yeah right! It's down to business.
I don't remember exactly what was said but cancer, multiple-myeloma and amyloidosis were the words that factored in quite heavily in that discussion. We got to go through the test results and were educated on what it all meant. Actually, that was all me, I'm the guy that wants to know the why and how behind the disease. In short order we were talking treatment plan and length. We discussed that multiple-myeloma is an incurable cancer but that it is highly treatable. I have since taken this to mean, you have a big brown spot on your white shirt, it won't wash out but we can keep putting white-out on it to hide it! Sounds like a great idea but sooner or later you have to run out of white out ... right?
Needless to say at this point I'm mentally exhausted. I've just been diagnosed with an incurable cancer that is causing me to have congestive heart failure. Now for those of you that know me well know that I'm half Polish (thanks a lot Dad!). So let me throw some statistics your way. The percentage of patients diagnosed with MM under 60 is less than 5%. Now let's look at the amylodosis diagnosis. I found some stats that basically suggest that less than 1% of MM patients also get the bonus prize. So to sum it all up ... my Polish gene/luck really kicked into overdrive on this one!!!
But the day isn't over yet! We are off to chemo class. This was relatively benign. Take care of yourself, eat well, take your anti-nausea meds and you should survive this. We talked about ports, thankfully I don't need one of those things. However, I did see some people in the class that made me realized that no matter how bad I might "THINK" things are for me ... someone else has it worse. So these days everytime I start to feel sorry for myself I take a look around and sure enough there is someone else that is probably having a worse day than I am at that moment. If not, I turn on the 5 o'clock news that that does the trick!!
So chemo class is over and treatment is scheduled for the 9th. Poison awaits!!!
After having the insides of my pelvis sucked out the doctor figured she wouldn't need to see me again until the 9th of August. That way all the tests and blood work could get back in and be processed. Well shiver me timbers if i don't get a call from my Hematologist asking my to call her immediately on the night of the 3rd. For those of you that don't know ... this is highly unusual. So the doctor and I play several rounds of phone tag in the afternoon of the 4th. Finally we get a hold of each other and she tells me that I have an appointment to see her on the 6th. Another novelty ... not, can you come in?, are you available? ... no flat out you will be in my office on this date at this time .... oh and bring your wife, she needs to be there as well.
So I dutifully tell Alyson what our plans are on the 6th of August.
08/06/2010 - We arrive and the usual poking and prodding is done with needles and needles with lasers and such. Off to the back we go so I can face the music. At this point I'm pretty sure I can name this tune in one for those of you that are old enough to remember that TV show! We get sat in the room and my hematologist comes in with a very serious look on her face. That is inspiring confidence in this diagnosis. Maybe I'm having puppies and she just needs to know what the heck I've been doing? Yeah right! It's down to business.
I don't remember exactly what was said but cancer, multiple-myeloma and amyloidosis were the words that factored in quite heavily in that discussion. We got to go through the test results and were educated on what it all meant. Actually, that was all me, I'm the guy that wants to know the why and how behind the disease. In short order we were talking treatment plan and length. We discussed that multiple-myeloma is an incurable cancer but that it is highly treatable. I have since taken this to mean, you have a big brown spot on your white shirt, it won't wash out but we can keep putting white-out on it to hide it! Sounds like a great idea but sooner or later you have to run out of white out ... right?
Needless to say at this point I'm mentally exhausted. I've just been diagnosed with an incurable cancer that is causing me to have congestive heart failure. Now for those of you that know me well know that I'm half Polish (thanks a lot Dad!). So let me throw some statistics your way. The percentage of patients diagnosed with MM under 60 is less than 5%. Now let's look at the amylodosis diagnosis. I found some stats that basically suggest that less than 1% of MM patients also get the bonus prize. So to sum it all up ... my Polish gene/luck really kicked into overdrive on this one!!!
But the day isn't over yet! We are off to chemo class. This was relatively benign. Take care of yourself, eat well, take your anti-nausea meds and you should survive this. We talked about ports, thankfully I don't need one of those things. However, I did see some people in the class that made me realized that no matter how bad I might "THINK" things are for me ... someone else has it worse. So these days everytime I start to feel sorry for myself I take a look around and sure enough there is someone else that is probably having a worse day than I am at that moment. If not, I turn on the 5 o'clock news that that does the trick!!
So chemo class is over and treatment is scheduled for the 9th. Poison awaits!!!
A quick aside (10/07/2010)
As some of you may know I went to the Mayo clinic for evaluation in September. I thought that would be a great time to catch up on the blogging. Let me tell you something ... not a very conducive environment for catching up on a blog. Especially if you're in a hospital room. However, I am determined to get this story out so away we go people!!!!
Saturday, September 11, 2010
July - The Whirlwind Begins
July 27, 2010 - I have an appointment with a rheumatologist today. First time patients are seen between 4am and 7 am in the morning and the appointment can last up to three hours. I kid you not on this one. I had a 5 am and I didn't get out of that office until 7:45 am. It was wild but very informative. Basically, if you have something that is just weird going on with you ... go to a rheumatologist. They deal mostly with arthritis but they are also like the Dr. House's of the medical community. I think he ran just about every type of blood test available. It took 14 vials of blood and a urine sample to escape the clutches of that office!!!
July 29, 2010 - Today was my first appointment with my hematologist/oncologist Dr. Barve. First impression was that she definitely was ready to do battle, a real firecracker of a doctor. Just what I need going forward with this illness. Even though at this point I still don't know what I have and what is causing the Amyloids. We start right out of the gate. She tells me what she thinks I have, Multiple Myeloma with Amyloidosis. She then tells me how she's going to find it and schedules the tests. So within one appointment I'm scheduled for a 24 hour urine test, a bone marrow biopsy, bone survey and blood tests.
She also plans ahead since we talk about possibly going to the Mayo Clinic. I ask about my survivability chances and she bluntly tells me that I'm not ready for that conversation yet. That was the punch to the gut today .... how the hell do you react to that news? She mentions that with this type of cancer it is usually very advanced by the time it is diagnosed because the symptoms literally sneak up on you. Well my symptoms ambushed me!!!
July 30, 2010 - The bone marrow biopsy. I had the opportunity to be unconscious for this procedure but this would have required waiting several days. At this point I'm in full blown let's get it done mode. So into the office for a local and punch it through ... literally. I will try and describe this as best I can but let's just say the next time I do this I will be unconscious. First they numb up the area above your pelvic iliac crest with lidocaine. After you are sufficiently numbed, they make an incision so the tool can be inserted to the bone. The tool is a hollow tube with a handle and another solid auger with a handle to make the hole in the bone. It's all hand done so at least it is quiet while they are drilling. Once the hole is made a big syringe is inserted and a portion of the liquid blood is removed from the marrow space. During the suction, it felt like blood was being drawn all the way down my left leg. Then came the marrow core sample. A needle is inserted all the way to the front of the bone and a core sample drawn. I thought the needle came out the front of my pelvis. Needless to say that this was one of the most uncomfortable things I've experienced in my lifetime. I was told this would feel like a tooth being removed but hell if that is the case I'd rather have my teeth knocked out by Mike Tyson!
After the procedure, we had a game plan written up for additional testing as well as an abdominal ultrasound and bone survey scheduled. Things are moving fast, it's hard to keep up and lots of information is being thrown at me now. But hey, hopefully I'll have an answer soon.
July 29, 2010 - Today was my first appointment with my hematologist/oncologist Dr. Barve. First impression was that she definitely was ready to do battle, a real firecracker of a doctor. Just what I need going forward with this illness. Even though at this point I still don't know what I have and what is causing the Amyloids. We start right out of the gate. She tells me what she thinks I have, Multiple Myeloma with Amyloidosis. She then tells me how she's going to find it and schedules the tests. So within one appointment I'm scheduled for a 24 hour urine test, a bone marrow biopsy, bone survey and blood tests.
She also plans ahead since we talk about possibly going to the Mayo Clinic. I ask about my survivability chances and she bluntly tells me that I'm not ready for that conversation yet. That was the punch to the gut today .... how the hell do you react to that news? She mentions that with this type of cancer it is usually very advanced by the time it is diagnosed because the symptoms literally sneak up on you. Well my symptoms ambushed me!!!
July 30, 2010 - The bone marrow biopsy. I had the opportunity to be unconscious for this procedure but this would have required waiting several days. At this point I'm in full blown let's get it done mode. So into the office for a local and punch it through ... literally. I will try and describe this as best I can but let's just say the next time I do this I will be unconscious. First they numb up the area above your pelvic iliac crest with lidocaine. After you are sufficiently numbed, they make an incision so the tool can be inserted to the bone. The tool is a hollow tube with a handle and another solid auger with a handle to make the hole in the bone. It's all hand done so at least it is quiet while they are drilling. Once the hole is made a big syringe is inserted and a portion of the liquid blood is removed from the marrow space. During the suction, it felt like blood was being drawn all the way down my left leg. Then came the marrow core sample. A needle is inserted all the way to the front of the bone and a core sample drawn. I thought the needle came out the front of my pelvis. Needless to say that this was one of the most uncomfortable things I've experienced in my lifetime. I was told this would feel like a tooth being removed but hell if that is the case I'd rather have my teeth knocked out by Mike Tyson!
After the procedure, we had a game plan written up for additional testing as well as an abdominal ultrasound and bone survey scheduled. Things are moving fast, it's hard to keep up and lots of information is being thrown at me now. But hey, hopefully I'll have an answer soon.
June/July - The Search Continues
Looking back, June and a majority of July consisted of visits to the Cardiologist so he could tell me how serious my condition was and "adjusting" my medications. We talked about Amyloids and possibly doing an endoscopic heart biopsy to "find" the Amyloids. Well Amyloids are supposed to be systemic, that means they are everywhere, so it shouldn't be that damned hard to find evidence right? WRONG!! Seems that the way these searches works is that you test an area and you don't find it there ... try again until you find it. That's a lot of places to look.
So, I was sent to a dermatologist and they removed a salivary gland to see if they could find Amyloids. That test was negative. So next they tried a sample of fat from my abdomen. Tried to get free lipo at this point but seems the dermatologist is smarter than I think. Well that test was negative. At this point, I'm a little frustrated because I have this thing they can't find in my body and they still don't want to biopsy the heart. However, towards the middle of July my primary care doctor calls and says that I need to see a hematologist and/or rheumatologist. Well at least we are starting to get some movement. I start scheduling appointments left and right to get into these docs. Seems that specialists require quite some lead time to get into see them.
I have to give props to my primary care guy Dr. Whitworth because he made a phone call and gets me bumped to the front of the line at my hematologist's office. That and the doctor he recommends, Dr. Barve, totally rocks. We'll talk about that in the next installment because this post is about the six to seven weeks that were wasted spinning my wheels with my cardiologist. The moral I learned during this is to open your mouth and tell the doctor what you think and challenge them to do something. I really feel, and you'll see in the next post, that with how fast things started moving in late July/ August, I missed out on chemo treatment time. That is time that could have been spent decreasing the Amyloid deposition in my heart and possibly saved it to some extent.
So, I was sent to a dermatologist and they removed a salivary gland to see if they could find Amyloids. That test was negative. So next they tried a sample of fat from my abdomen. Tried to get free lipo at this point but seems the dermatologist is smarter than I think. Well that test was negative. At this point, I'm a little frustrated because I have this thing they can't find in my body and they still don't want to biopsy the heart. However, towards the middle of July my primary care doctor calls and says that I need to see a hematologist and/or rheumatologist. Well at least we are starting to get some movement. I start scheduling appointments left and right to get into these docs. Seems that specialists require quite some lead time to get into see them.
I have to give props to my primary care guy Dr. Whitworth because he made a phone call and gets me bumped to the front of the line at my hematologist's office. That and the doctor he recommends, Dr. Barve, totally rocks. We'll talk about that in the next installment because this post is about the six to seven weeks that were wasted spinning my wheels with my cardiologist. The moral I learned during this is to open your mouth and tell the doctor what you think and challenge them to do something. I really feel, and you'll see in the next post, that with how fast things started moving in late July/ August, I missed out on chemo treatment time. That is time that could have been spent decreasing the Amyloid deposition in my heart and possibly saved it to some extent.
Sunday, September 5, 2010
May - My Birthday (What a present!)
So in late May my birthday has rolled around. However, I've noticed now that I have a pretty hard time walking up the back driveway (taking the garbage out) and going up our stairs in the house. Plus, this has all set on pretty fast, within about two weeks. My ankles have swollen to the size of grapefruits and my left foot is hurting like a mother. I thought maybe I had gout and that was causing the swelling. Couldn't explain the other away though.
I was scheduled to go to the doctor for my annual physical at the end of May so it worked out perfectly ... I guess. So I get to the doctor and he hears what I have to say. He's worried about my condition at this point and sends me immediately to a Cardiologist. Later he told me that I looked like a patient with Congestive Heart Failure.
So, the next day I go to the Cardiologist and they start poking around. I'm still short-of-breath and everything, but the symptoms come and go so I have days that I feel relatively normal. The EKG they do in the office is abnormal so they know something is up. The doc schedules a Stress Echo Cardiogram for me.
For those of you that have never experienced this let me enlighten you. They get you in the office in running shoes and shorts and put you on the table and jam this ultrasound "stick" in your rib cage with really cold goo on it to take a picture of your heart. Then after jabbing you with that for a while they hook you up to the monitor and treadmill. They do this by placing these sticky pads that if you have any hair on your chest will not conduct any electrical signal. However, after they remove the first pad the hair is removed and voila, it now has perfect continuity! It's a sham! Then they start you walking on the treadmill at a dirge of a pace. Have no fear, this is pace is shortly sped up and the incline begins to increase. Note: I've done this test when healthy and they've stopped it before I ever got really out of breath. This time I felt like I was going to puke my shoes up after about 4 minutes. Not my best showing. Now they have you jump back on the table so they can jam that damned stick in your rib cage again. All the while you are trying to catch your breath. Fun for the whole family!!
So once that test result comes back, the Cardiologist informs me that I have Restrictive Cardiomyopathy (Left Ventricular). Basically, I have congestive heart failure. He explains that the heart muscle is thickening in the ventricles and is not allowing the heart to relax and fill the chamber with blood before it pumps. This in turn causes the blood to back up in the system and causes the shortness of breath, fatigue and general crappy feeling.
So we know what the problem is, but we don't know what is causing the issue. Several things can cause this problem:
Heart disease
Heart attack
Illicit drug use
Amyloid deposition
Infection of the heart
Haemochromatosis (Iron Overloading)
We were able to wade through that list pretty fast. However, the one that is not able to be eliminated quickly is the Amyloid deposition. The search for the root cause is on!
I was scheduled to go to the doctor for my annual physical at the end of May so it worked out perfectly ... I guess. So I get to the doctor and he hears what I have to say. He's worried about my condition at this point and sends me immediately to a Cardiologist. Later he told me that I looked like a patient with Congestive Heart Failure.
So, the next day I go to the Cardiologist and they start poking around. I'm still short-of-breath and everything, but the symptoms come and go so I have days that I feel relatively normal. The EKG they do in the office is abnormal so they know something is up. The doc schedules a Stress Echo Cardiogram for me.
For those of you that have never experienced this let me enlighten you. They get you in the office in running shoes and shorts and put you on the table and jam this ultrasound "stick" in your rib cage with really cold goo on it to take a picture of your heart. Then after jabbing you with that for a while they hook you up to the monitor and treadmill. They do this by placing these sticky pads that if you have any hair on your chest will not conduct any electrical signal. However, after they remove the first pad the hair is removed and voila, it now has perfect continuity! It's a sham! Then they start you walking on the treadmill at a dirge of a pace. Have no fear, this is pace is shortly sped up and the incline begins to increase. Note: I've done this test when healthy and they've stopped it before I ever got really out of breath. This time I felt like I was going to puke my shoes up after about 4 minutes. Not my best showing. Now they have you jump back on the table so they can jam that damned stick in your rib cage again. All the while you are trying to catch your breath. Fun for the whole family!!
So once that test result comes back, the Cardiologist informs me that I have Restrictive Cardiomyopathy (Left Ventricular). Basically, I have congestive heart failure. He explains that the heart muscle is thickening in the ventricles and is not allowing the heart to relax and fill the chamber with blood before it pumps. This in turn causes the blood to back up in the system and causes the shortness of breath, fatigue and general crappy feeling.
So we know what the problem is, but we don't know what is causing the issue. Several things can cause this problem:
Heart disease
Heart attack
Illicit drug use
Amyloid deposition
Infection of the heart
Haemochromatosis (Iron Overloading)
We were able to wade through that list pretty fast. However, the one that is not able to be eliminated quickly is the Amyloid deposition. The search for the root cause is on!
March - The Beginning
Some of you may know that I referee youth soccer. Basically U19 down to U8. It's a great way to get exercise and make a little extra cash on the side. Well I had noticed that during my U14 games I was having some tightness in my chest after running for a full hour. Normally NOT a problem for me. Thought I was just out of shape and stressed out after being unemployed for seven months.
So, given my family history with heart problems ... I hauled butt to the doctor. My PCP sent me to a cardiologist and we had a CT Angiogram performed. Results came back that I had big juicy arteries and no blockages!!! Needless to say I was stoked, if I didn't have a heart problem I was just out of shape. My PCP told me to come back for my yearly physical in May and we'd circle back then.
Over the next two months things held pretty steady until about mid May ... then the fun started!
So, given my family history with heart problems ... I hauled butt to the doctor. My PCP sent me to a cardiologist and we had a CT Angiogram performed. Results came back that I had big juicy arteries and no blockages!!! Needless to say I was stoked, if I didn't have a heart problem I was just out of shape. My PCP told me to come back for my yearly physical in May and we'd circle back then.
Over the next two months things held pretty steady until about mid May ... then the fun started!
Wednesday, September 1, 2010
I'll try and catch this blog up by month. I'll start in March when the symptoms seemed to start. After talking with the Doctors there were other symptoms earlier we think but just like cancer to be the sneaky bastard it is they were very innocuous. So much so I never really thought about it.
Also, once I get it caught up I'll do my best to keep it updated on at least a weekly basis. I'm sure most weeks will be relatively boring. Something else, I'll try and keep the posts PG ... but I do reserve the right to swear at random on the page.
I would say enjoy the content ... but I will say thank you for your interest in my journey. I hope to use this as an avenue to disseminate information and vent from time to time. Perhaps, if someone out there reading this is experiencing a similar situation or symptoms this will help them.
Also, once I get it caught up I'll do my best to keep it updated on at least a weekly basis. I'm sure most weeks will be relatively boring. Something else, I'll try and keep the posts PG ... but I do reserve the right to swear at random on the page.
I would say enjoy the content ... but I will say thank you for your interest in my journey. I hope to use this as an avenue to disseminate information and vent from time to time. Perhaps, if someone out there reading this is experiencing a similar situation or symptoms this will help them.
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