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!!!!
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