Counting down the days

T minus 5 (June 12)

Joanne and the kids finished packing up the house for the summer and drove to Orlando.  They made it up in time to bring me some dinner and then stay on to watch the kickoff of the World Cup in Brasil. Tomorrow they had their eyes on going to Sea World's water park called Aquatica. At the hospital the second round of chemo well by without any problems.

T minus 4 (June 13)

I started my day with some more extensive exercising.  I'm determined not to let the stay affect me as much as my first one here.  There's no general restriction on exercise except that I have to always take the stand.  The central line rules do not allow any time off if for walking around freely.  The family stopped by after their Aquatica adventure, they had a good time there and now have passes to return all summer.  The World Cup had three games so no wasting time on soap operas.

T minus 3 (June 14)

The last day of pre-transplant chemo, there's more to come after the transplant to make sure my old cells don't grow and the new ones are allowed to take hold.  The chemo was going find, but today there would be an additional medication called Thymoglobulin, it's derived from Rabbit protein and is nicknamed the Rabbit.  Seems cute a fuzzy enough.  They did tell me that shakes and chills area  common side affect.  They weren't kidding.  My the midafternoon I felt like I was in a full-blown cold with aches, pains, and chills.  I lost my appetite for dinner even though Joanne had made a great homemade blueberry dessert.  I did manage to get that down, just like Lard Ass in Stand By Me...

My suffering became worse during the night and I started to experience some nausea.  Several times I fell to sleep to stave it off, but it was no use.  By 2:00am I was reaching for the plastic bucket and calling for Tylenol for my head.  I spiked a fever, which triggered additional blood cultures and a check X-ray.  I'm feeling much better rolling to T minus 2 but pretty tired.

The countdown begins

T-minus 7

With the transplant now scheduled, all days are measured from the transplant day.  That makes Tuesday, June 10th Transplant day minus 7 days.  The prep work begins.  I only had one procedure today, but the hospital scheduled it for 7:30am with a check in time of 6:30am.  Joanne and I drove up Monday night to my Mom's house in Orlando to cut down the morning drive. It didn't take very long before I was in the operating room to have a central line inserted through my chest.  I'm not sure why this is a better choice than the PICC line, but it seems like standard procedure for marrow transplants.

The rest of the day was spent checking into my room and unpacking. They hooked up IV fluid to begin hydrating my kidneys, but otherwise I was left to work and rest.  Joanne hung out for the day through dinner time, then headed back to Vero.  I was left with the NBA playoff game that didn't go so well for the Heat.  It gave me a good excuse to turn it off at half time and go to sleep.

T minus 6 (June 11)

The Drs started to make their rounds, but I still wasn't scheduled for any chemo until 9:00 at night.  I was able to work the majority of the day without too many interruptions.  With all my family out of town I had to break down and order lunch from the hospital.  It isn't any better than last time.  I slugged down a nasty piece of grilled chicken while I developed a new plan for dinner.  When I was watching a CNBC show, they featured Grub Hub which offers delivered take out food in metro areas.  One of the benefits of being in Orlando is that services like this exist.  So I found some nice Italian stuffed shells and ordered them online.  Less then an hour later, they were at my door in the hospital - good to know.

The pre-meds started at 8:30, chemo 1 at 9:00, chemo 2 at 10:00. Then there are five follow up blood draws through the night to help measure how quickly your body metabolizes the chemo.  The doctors will adjust the future doses based on these results.  The good news is that there is only four days of chemo in the entire plan.  All going smooth so far.

Just to leave you laughing, one of my PAs is named Dr. Balls.  I'll need to keep an eye on what he's doing.

April - Map Recap

It's been a while since my last update and that's mostly due to me spending some extra time at home with the family with nothing extraordinary happening, which is a good thing.  My last round of chemotherapy was the second week of April.  I completed the one week hospital stay plus the twelve days of follow up in Orlando before heading home just before the end of the month.  I had a two-week break planned before starting the third and hopefully final round of consolidation in May.

In the background, the conversation around long-term survival rates continued with my doctor and the bone marrow doctor that came to see me during my last round of chemo.  The cytogenetic evaluation done when I first checked into the hospital classified me as intermediate risk (there's also favorable, and unfavorable). The bone marrow doctor was convinced that AML with intermediate risk needed a transplant.  He said without it, I would relapse most likely within five years.  He seemed very straight forward, knowledgeable, and convincing in his position. But it was hard to listen to the news at this point - when I was only a few weeks away from completing the original chemotherapy regimen.  I went back and forth with my oncology team during this time. They were telling me that my odds were not that much better with the transplant. I was caught in the middle of this discussion and had to go find additional resources to help make my decision.

The first place I went was to a friend who had AML in his early 40s, had the transplant, and was now living cancer free.  He still had a close connection with his doctor and forwarded the high-level specifics of my case.  His doctor agreed that the bone marrow transplant was the way to go.  Of course, his doctor was also a bone marrow transplant doctor.  I wanted another opinion of an unattached oncologist.  I made an appointment at the Moffit Cancer Center in Tampa. This happened on the Thursday before the Monday I was scheduled to check back into Florida Hospital in Orlando for my final chemo round. The oncologist there agreed again with the transplant. He explained that the intermediate risk area was a gray area and perhaps in another five years they would have it broken down further into subtypes that would benefit from the transplant. But for now, the latest evidence was leaning towards the fact that patients with AML with intermediate risk cytogenetics did benefit long-term from the transplant. Recent studies had shown that with the transplant, if you make it the first year without a relapse, I would have a 55% chance of staying cancer free for good.  If I make it 2 years without a relapse, cancer-free stats go up to 70%.  And at 3 years, they go up to 80%.  This was verses data for chemo which only that showed about the same 55% success rate in the first year, but by year 5 only 20-25% of patients had not relapsed.

During the stay in the hospital, they drew a large blood sample (see pic) to perform HLA testing which is the way they match up donors. They also began the process of testing my two sisters who each had a 25% chance of matching.  My sisters were only partial matches so next they went to the Bone Marrow database (https://www.bmdw.org/). Initial screens turned up several likely matches and further screening turned up two EXACT matches. So the issue of finding a donor was no longer an obstacle.

The fact that we had a great match for a donor and the result of the Moffit meeting convinced me that the transplant was the right thing to do.  The Moffit doctor also suggested that if the transplant was soon, he would recommend skipping the final round of chemo. He suggested that I would be better served to rest and recover fully to head into the transplant at full strength. So I cancelled out of my final round of chemo and spent the time at home.

It was great.  I was able to get the PICC line removed and feel like a normal human again.  My kids had tons of year-end school activities that I was able to attend.  And I managed to get in a fair amount of tennis.  I also worked on my general endurance mostly by biking. I did try jogging a few times, but it was still taxing. I was also able to complete all of my pre-testing to get final clearance for the transplant which included several trips back to Orlando for x-rays, lung testing, and my least favorite - bone marrow biopsies. All tests were good and with the cancer still in full remission, they scheduled me to start the process on June 10th.

If you want to dive further into the details of the transplant, here's a good site:

http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant

Become a PCP - Primary Care Person

There will be some news on treatment moving forward in the coming days, but for now, I wanted to share some insights I am gaining on the healthcare system that I hope everyone can benefit from, no matter what might bring you to a doctor's office.

Meet your new PCP

As I continue my treatments for Leukemia, many questions arise while interacting with the health care system.  How will the medical professionals share information about me?  When there are multiple treatment options, who will decide which is best?  How does my medical insurance affect my treatment choices?  I realized that I must take the lead in managing my own health care, and you should too.  You are now your own PCP - Primary Care Person.

Personal Health Records

Today’s health care system is modular.  Hospitals, doctors, specialists, and testing centers are all set up as separate businesses and rarely share information.  There is currently no universal electronic medical record system so you must be responsible for the transfer of knowledge between them.   My first, and most important, recommendation is to starting keeping your own health binder that contains all of your health information including medications, tests, shots, procedures, and even frequent notes about your weight, appetite, and how you feel.  People move, doctors retire, and an emergent situation may thrust you into a health care setting where a caregiver must make decisions for you.  It will provide you peace of mind to know that it’s all in one spot. 

Doctors

In the past, Doctors were the center of the health care universe and their word was accepted as law.  Moving forward, you must place yourself at the center and realize that there are many treatment options out there for you, but you must explore them, ask questions and decide for yourself, which is best. 

I have an oncologist who has told me that I only need to complete my chemotherapy and I should remain in remission.  Then I consulted a bone marrow transplant doctor who said that I would eventually relapse without a bone marrow transplant.  How does a layperson resolve this conflict?  You have to seek out multiple opinions.  In my case, I went to the Moffitt Center in Tampa to get a third opinion from an oncologist there.

Do you need surgery or can you rehab with physical therapy?  Should you go to your local hospital or travel to a specialized center?  Do you take more pills or change your diet?  You must ask questions and find the best treatment option for you.

Insurance

You need to become intimately familiar with your insurance coverage.  Insurance companies modify their coverage each year and most changes can go unnoticed.  It’s better to stay on top of these changes before getting into a health care situation.  You need to understand deductibles, prescription coverage, total out of pocket maximum, and hospital verses outpatient coverage.  Not knowing these answers can cost you big down the road.  One of the benefits of the Affordable Care Act is that you can shop your coverage freely to meet your changing needs. 

When undergoing tests, it’s easy to assume that they’re all covered by insurance.  Is your test still covered when you walk across the street?  Will there be another co-pay?  Is the test necessary?  How much will the test cost?  These are all questions that most people do not ask, but ones that we will all have to as we move forward.

You also need to get educated and involved on the billing process once you’ve received care.  Medical providers have their standard prices for services, which no one really pays.  They submit these fees to the insurance provider who re-prices these services down to pre-negotiated rates, typically 50%-60% lower.  Then they decide if your coverage will apply to these charges and if so pay the appropriate amount.  You may be left with a co-pay or uncovered balance that comes out of pocket.  Don’t be afraid to ask for discounts from your health care providers.

My college professor always said, “If you don’t have your health, you don’t have nothing!”  You must make it a priority to take on the role of primary care person for your own health and anyone to whom you are a caregiver.  It’s going to be work, but  you’re worth it.    

Still Here

Sorry for the absence, but I'm still here!  The truth is that I lost my motivation to write during the latest round of treatment.  The third round was more emotional and harder mentally even though there's been no change in the treatment plan.  I spent the week of April 7th in the hospital on chemo.  I am starting to know far too many of the staff there now.  That week passed as expected and so too did the follow up week of the 14th.  In fact, the numbers and cycle were almost identical right down to the slight fever I got on the 21st and the transfusion of platelets I needed.  I was fearful that I would have to return to the hospital, but on Tuesday my fever broke.  By Wednesday of last week, the doctors were satisfied with my levels and released me home for 2.5 weeks.

I was able to get home in time for a visit from my brother who suffered through the endless winter in D.C.  We had a great visit and he was able to check out some of Brenna's soccer tournament over the weekend.  Some great games even though they lost 0-1 in overtime in the finals.

This week I head back to my Oncologist's office to discuss what I hope is the final round of treatment coming up.  I haven't actually seen him directly in over a month, so tons of questions are piling up about the final round and life after.