Tuesday August 24th, 2010

First visit back to the hematologist since my trip to the hospital. I'm feeling better so that is one positive. Unfortunately this visit will not yield positive outlooks. As Alyson and I go through the usual exam language and banter my doctor springs a question on me for which I am wholly unprepared. Earlier I had asked what my prognosis was with this disease and the doctor had bluntly replied that I was not ready for the answer to this question. That was a ringing endorsement in itself. Well in light of recent events I guess she felt I should be told what my chances are. Granted we aren't going to get out of life alive, this sort of talk still can make your hair stand on end. Basically, patients with cardiac amyloid involvement to my degree presenting the symptoms I'm presenting have a shelf life of 6 months to 1 year. That is without a heart transplant. And of course the chances of getting a transplant is pretty much zero for amyloid patients and definitely zero for patients with any active cancer. So today the stark reality begins to set in.

However, the struggle continues and my doctor schedules me for a trip to the Mayo clinic to see if the brain trust up there can figure out a way to save my life. A couple of phone calls and we are scheduled to be there on the 9^th of September.

Thursday August 12th, 2010

Today started like any other day. But behold Murphy … if it can go wrong … you can bet he'll be there cheerleading. After bringing in the new garage door opener with Alyson I did notice that I was a little more short of breath than usual.

I just attributed that today was going to be a bit more of a struggle than others. Thankfully I was able to get down the tollway without passing out and arrived safely at work. It was here in the parking lot that the difficulty of the day was going to become overly apparent. It was a relative hot morning already and that coupled with the CHF was not making things easy. I exited the vehicle, got my lunch bag and started for the door. After about ten steps I was so out of breath and dizzy that another step was not possible. Thankfully I had parked in a semi-shady spot so I was able to lean against another car and rest. However, I had moved all of about 15 yards and had a very long way to go to get to the front door. So, after a couple of minutes I tried again ... to the same result. At this point I little bit of panic starts to set in. It's hot and sunny outside, I'm on the verge of passing out, and I'm not in Mexico at a beach side bar on vacation! Very disturbing times!  I realize that I will have to “dash” for the door and hope for the best once I get inside.  At least it air conditioned and I won't fry on the parking lot.  the worst that could happen is carpet burns and a reprimand for sleeping at work.  So I give myself an extra minute or two to rest up and away we go! I get through the front door of the Tech Services building and collapse onto the strategically placed visitor's couch. After several minutes of hyper-ventilating I'm able to pull myself from complete heap status to sitting up and breathing relatively normal. Still have stars in my eyes but I need to get to work.

I get to my station and it must be obvious that something is wrong. How do I know this you ask? Well everyone passing by is asking “What's wrong?”, “Are you feeling OK?”, “You look like crap.” Another clue to how this day is going to end. I sit down, login, plug in and immediately become dizzy. Not a good sign. I'm able to work like this for about two hours and then it finally happens. On the verge of passing out, for the umpteenth time, I'm unable to communicate with a coworker that something is wrong. Even somebody as stubborn as me can realize that something has to be done. So I call up my Hematologist and discuss the symptoms thinking the chemo is just really messing with my head. They tell me I need to get to their office immediately, no explanation just get there. Now I'm worried. So, I notify management of what is going on and off I go across the city to the doctor's office. In hindsight, driving myself in that condition was an awfully stupid choice.

Once I got to the doctor's office they ran the usual battery of blood draws, weight and vitals. A quick exam and I'm being admitted to the hospital. Seems that my fluid volume in my body had gotten out of whack (medical term) and was causing my shortness of breath and extreme fatigue. Not to worry though, just a tune up session to get my meds straightened out and get the fluid off. They said it'd take about two days.

Now I could regale you with stories from my nine day stay in the hospital, however I will not bore you with the mundane. However, a few things learned from the stay. First, when one doctor prescribes a medication and another cancels said med, ask the canceling doctor if they have spoken with the prescribing doctor. That one move could save you several days in the hospital. Second, if you are placed in ICU for monitoring and you are not a victim of a severe crash or disease you will be popular on the floor as you are probably the only patient that can speak on their own. A very humbling experience. Third, if you hear the words Infectious Disease doctor … run. There is probably nothing wrong with you, but they will find something to justify their billing. This one seemed to think I had pneumonia. Not to mention they will put false information in your medical records about your lifestyle habits. For the record, I am NOT a two pack a day smoker!!!!

Needless to say I survived the hospital and they did get my weight down. So the fluid volume thing was an important lesson. Another important lesson was drug insurance coverage! The infectious disease doctor prescribed this really high powered anti-biotic, to finish off the phantom pneumonia, and when I finally found a pharmacy that stocked it the price tag was over $1200!!! That's for 10 pills folks. Thankfully, I only had to pay a $25 copay but that was a pretty shocking look into healthcare without insurance. Something I'm sure we have all done at one point or another in our life. So that is my story and I'm sticking to it …. till next time!

Take care of yourselves!

Monday August 9th, 2010/Tuesday August 10th, 2010

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!

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!!!

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!!!!

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.

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.