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.
