Reclaiming My Blog

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So apparently BLOGLOVIN' acquired BlogSpot and my blog now lives here. But I had to paste the above link to "claim" my blog. Like anyone else could make this stuff up?!?! Jeez, well let's see if this works.

Update since September 2011 through 2012

So ... I've been a bad, bad blogger. My last substantial update was October 2011 and a ton has happened. 

So late in October I was able to attend my 20th High School Reunion. It was interesting to see how some people having grown and others really have stayed the same. I guess some high school stereotypes are hard to break. Still, getting to see old friends and catch up was really nice. A good distraction from what has been going on over the past year.

In January my PET scan and bone marrows came back clean. The amyloid beast is still slain. Hopefully it will stay dead. So cancer is on the back burner and the heart is the looming issue now.

On a cheery note, Alyson and I met with the fertility doctor and discussions began. Did I present a good enough specimen from before? Would Alyson have viable eggs (yeah like that was even a question Ms. Healthy as a horse)? Are we crazy enough to try this? It appears that all the questions were in the affirmative. So, we all shook hands and the doctor agreed to try and get my wife pregnant. All I had to do was give her a bunch of shots over several weeks!!! I have to say, when I put it that way it's just disturbing. But lo and behold, ask and ye shall receive. So, the procedure ensued and then several weeks later we waited for the news. Were we pregnant or was it going to be rinse and repeat? Great news!!!! We were pregnant with twins no less. The news alone has probably cause some men to start having heart problems. So, three way high five .... yeehaw. Now the next big question. Boys? Mix and match? Girls? We each had our own preference but regardless, we agreed as long as they were healthy, we didn't care what they were and in what combination!!

Alyson, was a champ through the whole pregnancy. The woman is amazing. I'm still looking through the house for her Wonder Woman uniform and invisible jet parked outside.

In June, I was cleared to go back to work which was nice. Everybody seems to think being out for medical leave is a big party and vacation. Yeah, people I was sitting on the beach drinking margaritas in Mexico. More like tons of doctors visits and needles sucking things out and inject other crap into the body.

By the way, for all out there wondering. When you get your immune system "rebooted", guess what???? That's right you get all your immunizations all over again!!!! Yea for more shots and the wonderful after effects of their contents, fever, chills ... sore ass.

In November, along came our twin girls!!! Now I was really starting to wonder what I had gotten myself into! I don't think any amount of recovery time prepares you for that experience. But me sitting here writing this is proof I survived! The rest of the year was spent with family and friends for Thanksgiving and Christmas. Good times for all. I was still alive but more importantly two beautiful new little girls. My mom was quick to inform me that they were the first girls born on our side of the family in 70 years.

Overall, a pretty great year. I'll try and get the 2013 update out soon. I'm sure I left some important event out of this update and Alyson will remind anyway.

My 2nd Hopital stay and beyond!

I was recently in the Pulmonary lab getting a check up and the technician and I were talking about my blog.  I mentioned that I hadn't written in a long while and she made a good point about continuing to write and update about my progress.  I'll summarize in a conversational format below:

Me: "Yeah I was blogging about my experiences with the cancer treatments and stem cell transplant (SCT)."
Tech: "Really, that's cool.  Do you write regularly?"
Me: "Not since I got out of the hospital."
Tech: "So how do people know that you didn't die?"
Me: "My wife sends an email out from time to time."
Tech: "What about other people on the Internet that search and read that don't get the email. Like people that are going through an SCT or have cancer?"
Me: <insert stupid look on my face here> "Hmmm .... that's a good point"
Tech: "Yeah ... here ... blow into this tube"
Me: <turning blue>

So for those that didn't get the email ... I'm NOT dead!!!  It's just been a bunch of slow news days with regard to my health.  So now for the update!

After the hospital stay for the SCT I had to go back into the hospital for about a week.  I lasted on the outside for about 4 days before I got sick.  My blood pressure was extremely low and I started running a fever.  So from Feb 15th to the 21st I was back in the hospital.  After that I started the slow and arduous climb back to health.  Soon after that last hospital stay I had to have my central line taken out because it kept getting infections.  That was actually a blessing because I was tired of taking a shower with a tube hanging out of my chest.

I tried to get back on the exercise horse and I promptly hurt myself.  That little mistake ended with me going to physical therapy for several months.  Next time I'll think twice of trying to ride 4 miles on my bike a month after being discharged from the hospital.

Doctor appointments with my Hematologist were about every week at first but as my numbers have started looking better I now only have to go once a month.  I've officially been in remission since February/March so that is some pretty great news.  The Amyloidosis is not active anymore so atleast it isn't doing anymore damage to my organs.  I still have the effects of congestive heart failure though and that part sucks.  My stamina has gotten better.  However, I feel I'm a shadow of my former self, but atleast I'm still breathing!!!  My cardiologist did an EKG and I've been steady with an ejection fraction of 20 to 25.  There are some drug companies out there testing drugs that remove imbedded Amyloid proteins so I'm hoping that within the next 5 to 10 years maybe something will come to market.

I went back to work half time in May and then full time in June.  It was really nice to get back to work.  I missed the people and being sick and on the couch for 8 months really is not a pleasure.  I don't recommend it to anyone!!!

So that is it in a nutshell.  Things are progressing slowly but surely.  Just waiting around for the big one year check up in January.  I'll get a PET scan and a bone marrow biopsy.  For those of you that don't remember what the biopsy feels like, look back at my earlier posts and you can recap that experience!  Fun times!!  I'll try and keep up with this a little more often!

See y'all next time!

Ed

Stem Cell Transplant - Five weeks of hospital fun! (Jan 13th - Feb 10th)

Jan 13th
Showed up at Baylor at 0930 so they could place my central line in my chest.  The central line has a tube that connects to one of the large veins near your neck and it splits into three tubes.  This way they can take blood, return blood and have you on IV all at the same time.  Honestly, this is the part of the procedure that worries me most.  I have never had surgery and swore that the only way that I would let someone take a knife to me is to save my life ... apparently I like irony.
Once I get checked in and into the standard hospital gown the take me to the pre-op room.  Here a nice nurse places an IV line the size of a garden hose in my arm.  Thank god she atleast deadened the area.  The surgeon then came in while the nurse was playing pin cushion with my arm and spoke with me about the procedure.  He proceeded to tell me all the different ways that this procedure could go wrong.  He concluded his "pep talk" with "don't worry you'll be fine" ... I feel much more confident now ... thanks doc!  Once the surgeon left, in came the anesthesiologist, BTW the nurse is still putting the garden hose in, to give his bit about anesthesia and its issues.  By this time the nurse is done and the anesthesiologist gives me an injection to take the "edge off".  Whatever he gave me, I didn't make it out of pre-op conscience.
As an aside, for those of you that have never had surgery before.  During surgery you are completely naked on the table according to what one of the nurses told me.  They then cover you "strategically" only with a paper sheet.  I was admittedly a little uncomfortable with this explanation and that I was about to undergo the process.  Unconscious with no clothes on in a room full of strangers is never a good proposition.
So the surgeon does his thing and I wake up in the recovery area.  I guess my blood pressure had dropped pretty low during the procedure so I had to hang around in recovery for a few hours.  Once my BP had gone back up I was whisked away to the Bone Marrow Transplant Unit (BMTU) ICU area.  Given my heart issue they had to monitor me for a few days.  I had been told that the rooms were good sized, however the ICU rooms are about the size of a closet.  At this point it was late in the afternoon and I settled in for the night.  The fun was to begin tomorrow.

Jan 14th
I started receiving Neupogen shots to boost my blood cell counts which in turn boosts stem cell production.  I received these for the next three days.  Now one of the side effects of the Neupogen is bone pain.  I thought I was in the clear since I never had any pains ... until the last day.  On the last day the pains started just below might right knee in the shin.  It felt like someone was hitting me continuously with a hammer.  I kept looking around for Tanya Harding.  After all the Neupogen shots my blood counts were through the roof.

Jan 18th
Apheresis started today.  This is a process where they pull your blood out and send it through a machine that clicks incessantly and then send it back into you.  The machine centrifuges the blood and seperates the stem cells out of the blood.  The first time I experienced this they started the machine and I saw my blood leaving my body .... but nothing was coming back.  I waited and waited and waited and still nothing.  At this point I had to ask if my blood was going to Cleveland before coming back to me.  The nurse assured me that this was normal.  The delay not the travel to Cleveland.

Jan 19th - 21st
The nurse came in and woke my from blissful slumber at 0545 to go for collection.  Well after getting ready to go I started out the door and the nurse stopped me and told me that the unit was full after all and that I had been bumped back to 1030.  If I could have lifted my IV pole I would hit the guy.  I was a little cranky since they woke me up so damn early and my leg was still hurting from the Neupogen.
The collection process lasted for four days total and each session lasted five hours.  Thankfully, I didn't have nausea or diarrhea like some of the other patients because once you're on the machine you can't leave.  On my last day of collection I got a treat.  They moved me from my ICU closet room to a regular room in the unit.  It was definitely one of the biggest hospital rooms I've ever seen and served as a good morale boost.  Now began the waiting game.  Before they can give me the chemo (Melphalan) dose to kill my bone marrow (and subsequently everything else in my body) my blood counts had to start coming down.

Jan 24th
Today I received my high dose of Melphalan.  Let the killin' begin!!!  I get a day of rest and then the next day the SCT begins.

Jan 26th - 27th
Happy birthday to me!!  In the BMTU when a patient received their transplant it is considered your new/second birthday.  Because of my unique situation with the heart and amyloidosis my transplant was going to take two days to complete.  The first day I got five of nine bags of my stem cells put back into me.  The procedure had been described to me and it sounded like a seance.  The occupational therapists came in put pressure point wrist bands on me to help me relax, scented oils were rubbed behind my ears, my feet were massaged (that was awesome) and when they opened the cooler with the stem cell you could see the liquid nitrogen fog.  Thankfully there were no Ouija boards involved!  Next they gave me a huge dose of Benedryl to help combat any adverse reaction to the preservative in the stem cells.  It also helped to make me super groggy.  When they began the injection of the stem cells I was able to enjoy quite possibly the most uncomfortable feeling of my life.  As they pushed the stem cells in my heart literaly felt like it was going to pop.  Couple this with the uber-groggy feeling from the Benedryl and it was an awful day.
The next day was the same except this time they cut the Benedryl dose in half.  That reduction and the fact that I didn't fight the grogginess this time and went to sleep helped make the day better.  Now, a peculiar side effect of the preservative is that it causes the patient to emit a strong creamed corn odor.  Luckily I never smelled it but if you ask Alyson about it ... she'll tell you how it was a plesant smell to experience for over a week!  I've noticed that we haven't had creamed corn since my transplant ... I wonder why?
Once the transplant was complete I got to watch my daily blood count numbers steadily decline.  The first four days the numbers fluctuated up and down but then after another four days on Feb 4th I officially did not have an immune system.  Now I just had to hope that the stem cells were going to do their job and "reboot" my immune system.  I had to start taking Neupogen shots again for a couple of days to help boost my blood counts.  Of course Neupogen equals bone pain but I guess that is a small price to pay to be able to fight off the simplest of infections.

Feb 8th
My doctor says I'm ready to be paroled!!  Of course for the next several weeks I'll have to wear a mask when going outside to face the general public and for atleast three months be extremely careful hygiene wise.  Basically I'll have to wash my hands after touching anything and I started carrying hand sanitizer with me everywhere.  On an interesting note, you never realize just how many people DO NOT WASH THEIR HANDS after using the restroom until handwashing becomes critical to your survival!!!!  Come on people that is just gross!!!
The weather for the 9th was forecasted to bad so we delayed my departure until the 10th, basically this would allow the snow and ice to melt.  While washing my hair on the 9th I got a little surprise.  My hair was coming out in handfuls.  This was part of the SCT owner's manual that I guess I missed.  When I talked with my nurse she said that she was suprised that it hadn't started falling out earlier.  So to avoid the possibility of uneven hair loss they were nice enough to have someone come in and shave my head the next day.

Feb 10th
Today was really busy.  Head shaved, therapists coming in to explain how to exercise, how to avoid infection, nutritionists to explain how to eat, what type of appetite to expect, packing up all the clothes and stuff that had accumulated over the extended stay and finally the cart and wheelchair arrived.  I was free!!!  It was a long and arduous process but here's hoping it sticks!!!

Between Mayo and December

This will be short and sweet.  There really wasn't a whole lot to report during this time.  Chemo once a week, a bone marrow biopsy and reports that were generally showing the disease in retreat.  As far as the bone marrow biopsy is concerned ... the way to go is to be put under for the procedure.  Definitely makes it much less painful.  The final good news of this period is that my numbers regarding my heart and pulmonary function tests have made enough progress so my hematologist and cardiologist believe that I can survive the stem cell transplant (SCT).  I'm still not within the standard "protocol" numbers, meaning the numbers should be higher for me to undergo the procedure, but the SCT is the best bet for my survival and dying slow on chemo just isn't my style!  Next update will be from the hospital!

The Mayo Clinic visit - Wednesday September 8, 2010 - Saturday September 25, 2010

Wednesday September 8, 2010

Travel day from Dallas to Rochester, MN. Thankfully, it went off without a hitch. Flights to Minneapolis were on time, easy transfers and only a small wait at the car rental counter. The drive down to Rochester was scenic and hotel check-in was painless.

At this point I should have started to worry about this trip!!!! Easy travel = bad omen!

Thursday September 9, 2010

Crack 'o dawn wake up call for check-in at the Mayo clinic. Top that off with a fasting restriction for blood work and that makes for a grumpy morning. Hop the shuttle and away we go. Front desk registration, check, now up to the hematology area for check-in. Now keep in mind that we had to hand carry all of my medical records from each doctor I'd seen here in Dallas, plus my hospital stay. It looked like we were carrying a library with us. Also, doesn't help that my CHF is flaring up so Alyson is pushing me around in a wheelchair. After filling out mountains of forms and transferring my library of medical history to the Hematology desk we finally get to go back and see the doctor. Thankfully, I brought Alyson and her Mom with me on this trip, because they really picked up on somethings that I never would have. First, the doctor probably only took about 45 minutes to look over records from my Hematologist, Transplant Hematologist, Cardiologist, Primary Care Physician and my hospital stay records. After a brief meeting and exam with the doctor we were given our schedule for the rest of the day at the clinic. First stop was the bloodletting department. I swear they took at least 20 tubes of blood. It was bad enough they had to give me OJ and graham crackers. Then off for a urine sample (giving one, not taking one) and to pick up the 24 hour urine collection jugs. Let me tell you, carrying that big orange jug around makes you feel fabulously fashionable!! Lunch, EKG and Echo-cardiogram and we're done for the day.

We did receive a fabulous piece of news this day. My hematologist Dr. Barve emailed the data regarding my light-chain amounts and there had been an 85% reduction in the little buggers. So at least we know that the current treatment plan is kicking butt!!

Friday September 10, 2010

Another early day but this time we opt to drive and park versus the shuttle. To get the process rolling (ie. Drop off the urine sample) I get dropped at the front and begin the walk to the collection point. The Mayo complex is actually pretty large so this requires a relatively long walk from one building to another. Remember how smooth things were going until this point … this is where the wheels start to fall off. Now, I've never experienced chest pains or anything close to them, but half way between buildings I started to get a taste. I found a place to sit down and things seemed to calm down a bit. But after a couple of minutes Alyson came up with the wheelchair and things started to head downhill from there. We got over to the area where my scheduled appointment was and they had a doc come out and talk with me. Then they rolled me over to an out of the way corner. Next thing I know about 10 ninja doctors and techs appear from nowhere. It was impressive and scary at the same time! They had a heart monitor on me, then on the stretcher, an IV run, medicines flowin' and they threw me in the back of the ambulance for the short drive to St. Marys hospital. Some triage work, MRIs and I'm being admitted to the hospital.

Once the team of cardiologists got up to my room I was informed that I did not have a heart attack and that I didn't have any artery blockages. Basically, I had just pushed a little too hard and the CHF was kicking my butt! However, they were going to keep me for evaluation since part of the reason I was up there in the first place was to see if I would need a heart transplant before a stem cell transplant. They asked another battery of questions about what I thought was unrelated stuff, made a bunch of notes, and ordered a crap load of tests. Little did I know that one of those tests was for tuberculosis. Seems there was an infectious disease doctor in the room and you all know how I feel about those doctors from my earlier posts.

So, we are thinking that I'll be under observation for a few days and then be out. I'll finish up the tests and see my hematologist and we'll get a plan together to beat this cancer back into remission. Saturday and Sunday are pretty much just sticking around the ward on telemetry letting them monitor my heart.

Monday September 13, 2010

On Monday however the infectious disease doctors made their presence known in a big way! They came in and told us that out of the 12 tests they had conducted, one had come back positive for possible TB infection. The test that they said was positive was one PCR test out of three and that test had never produced a false positive. So, away into isolation I was put and anti-TB drugs commenced. By the way, if you read the side effects for the TB drugs you might rather take chemo treatments. To make matters worse I was going to have to be in isolation for two weeks until the drugs made sure I was not contagious. So, Alyson was going to need to travel back to Dallas and the doctors were very unclear as to her travel status. After listening to the doctors waffle for a day we decided that Alyson would head home.

Chest x-rays ensued and they found a few nodules on/in my lungs. Well time for a biopsy. The idea of someone poking a needle into your lung and pulling out material is a bit freaky. Of course the possibility of lung deflation is even freakier. The process is pretty interesting as they use a special machine to guide the doctor where to poke. Of course once the poke is done … it's a little uncomfortable. Blood comes out via cough and generally you feel a bit of diminished breathing capacity. It passes pretty quickly. They run even more tests on the biopsy and still cannot find TB. They did however find amyloids so now I know I've got lung involvement.

So at this point I have a bunch of test saying I don't have TB and one that I do. Luckily my cardiologist team and hematologist are getting into the fight and trying to get me out of there. Nobody thinks I have TB except the ID doctors and even I think they are beginning to doubt it as well. Finally, towards the end of my stay one of the ID doctors comes down and we talk. Come to find out that the PCR test they are using is relatively new. When I asked him what their sample set was for the test the reply I got almost made me lose it. My only reply to the doctor was “That's kind of a small sample set to be making the claim that it is 100% accurate and has never produced a false positive don't you think?” He agreed and mentioned that a patient currently in the hospital that had tested positive for TB and had symptoms had a negative return on the PCR tests. Shortly after this conversation my TB meds were stopped and I was released from airborne isolation, at least I got to keep my private room. Now came the job of getting discharged from the hospital. They was a lot of passing the buck and waffling on this one as well but in the end they didn't have a reason to keep me. So on Thursday September 23 I was released into the wild. Felt like I should have run into the woods or something. Instead I took the shuttle to the hotel across the street, ordered a pizza and savored sitting on a couch with my feet up!

The Mayo clinic had given me a schedule of appointments with my discharge papers so I had something to do the next morning, meet with my hematologist. I went to the appointment and it was pretty uneventful. He outlined a course of treatment different than what I had been on. When I came to the clinic my heart's EF was very low (12%-15%). To this day I attribute that to the fact that every echo-cardiogram I got had been two days after my chemo treatment when fluid retention was at its worst. However, the Velcade I was taking has a bad reaction with a small percentage of patients and he thought that I shouldn't be on that treatment. Especially, since my heart's EF had improved to over 30% after having been off the chemo regimen for two plus weeks. He wanted me take a regime of Melphalan and steroids to chemically ride this cancer into remission.

Now remember earlier that I said I was glad I had brought Alyson (lawyer) and her Mom (microbiologist) along. Well, they had picked up on the hematologist's general attitude toward my case and had determined that pretty much I was being written off to die with the rest of the Multiple Myeloma/Amyloid patients. Now his plan would extend my life somewhat but the stem cell transplant is currently the gold standard of, how should I put this, extending your warranty on this Earth! Basically he felt that I was too sick to survive the transplant procedure.

Well I'm not giving up that damned easy. Alyson came in during the afternoon and we decided to cancel the rest of the appointments at the Mayo. I'd heard enough. We packed, I booked us a ride on the wrong shuttle for the next morning and we went to have a nice dinner. She was a sight for sore eyes!! The next morning while waiting for the shuttle to arrive I had to call and be informed that I had booked for the next week. Note to self, check the damned date when reserving online! I got us a refund and we got a cab that would take us to the airport. It cost a little extra but I think it was worth not being stuffed in a shuttle with a bunch of other people. The flight home was uneventful thankfully and Alyson's parents picked us up at the airport.

A few summary remarks if I may about the Mayo clinic trip. The facilities at the clinic are fantastic! The doctors really do know their stuff. Every doctor I talked with knew about Amyloidosis so their was no puzzled looks. Also, the hematologist I saw I'm sure is a great doctor. However, I need a doctor that is going to think out of the box and push the envelope a little when it's this serious a fight. Overall I'm very glad that I got to go and be evaluated even though the results were less than favorable in my opinion. In this battle I'll take every opinion I can get!

God bless and stay safe.

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.