It has been a very long time since I have last written a journal. What is to ensue will be my best attempt at an informational journal summarizing the course of mostly physical/medical events which occurred over the past six months or so. I had intended to write about a couple of other topics as well, such as how I feel mentally and emotionally about what has been going on, but will instead write separate journals to touch on those topics in the near future.
On November 15th, 2011 I received my third bone marrow transplant from an anonymous donor. Before I go on, I want to take this moment to advocate for the bone marrow registry. The bone marrow transplant I received was only possible because someone out there, who I don’t even know, signed up to save a life…my life. Out of the 15,000,000 people around the globe that are on the list, I had only TWO matches that were close enough to donate to me! TWO! The fact is, there are thousands and thousands of people out there who can’t find a match at all, and that matching donor is their ONLY chance at ever being cured of cancer. The one common question that I get from my support system is, “Is there anything I can do for you?” If there was anything tangible that I would need it would be gas cards…but the one thing that would mean more to me than anything is to sign up to be on the bone marrow registry – #1 item on my Bucket List. If you, or anyone you know, has signed up to be on the list, I would love to know. It would make me feel amazing knowing that there is a list of people out there that I have inspired to sign up. I totally understand if you would like to remain anonymous, but if you want me to know and everyone else in the world to know how awesome you are for signing up, then send me a simple email at [email protected] and I would love to add your name to a list of lifesavers. It is SO easy to sign up…you simply swab your cheek and mail in the sample. The donation itself is donating blood. You don’t donate organs or anything like that. And do not feel guilty or bad at all if you choose not to be on the list for whatever reasons you have. I would never hold negative feelings on anyone for choosing not to sign up. I will add additional information at the bottom of the blog about the registry and continue with the journal.
I first want to apologize to anyone out there who has been reading Cari’s blogs and that some of the things that I write may be some regurgitation of facts you already know. Knowing that, I will do my very best to not put you to sleep. The transplant itself went quite well. The treatment regimen that they determined that would work best in my situation was a non-myeloablative allogeneic stem cell transplantation. I’ll try to put that into human words.
Non-myeloablative: The chemo and radiation are not designed to kill off the cancer all on its own. They main purpose is to knock down the levels of cancer in the body to a much more manageable state to give the donated immune system the best chance at killing off of the rest of the cancer. In fact, a fully myeloablative chemo regimen is strong enough to kill the patient all on its own. Due to the fact that my body has been through an insane amount of radiation and chemotherapy, our only safe option was the non-myeloablative regimen. This basically means that I have to constantly be making risky decisions about my care and how I approach each and every occurrence. Here, it is now important to note that chemo and radiation just simply aren’t strong enough to kill the cancer…at least for me. My leukemia has become so incredibly resilient and strong that even the most toxic chemicals won’t work, thus further and more complex solutions (transplants) are the best chance at finding that cure. Throughout the years I’ve been going through this, I have had multiple instances when both radiation and chemotherapy were completely ineffective.
Allogeneic: The type of transplant when the cells are from a donor…in this case an unrelated donor.
Stem cell transplantation: Replace my immune system with an immune system that is capable of killing off whatever cancer cells that the non-myeloablative chemo, previously stated, was unable to. This is the KEY to everything. If the donated immune system fails and is unable to perform this task, the chances of being cured plummet. Now that I have had three total failed transplants, the odds of another (4th) transplant curing me are catastrophically low.
So there I was, back at Froedtert Hospital (my home away from home), getting annihilated by the chemotherapy and doing everything I could do to keep the fight going. I was in-patient for a month or so. After receiving all of the chemotherapy plus the transplanted immune system, it takes months, sometimes up to a year for some patients, for the immune system to start producing cells normally again. Everything goes back to zero – meaning that all of your immunities, any vaccinations, whatever the case may be…you’re blood system now resembles that of a newborn baby. What’s really wild is that my blood type actually changed from A+ to AB+. That’s because my donor was AB+.
With the transplant completed, it is now my job to do everything that I can to stay as healthy as possible. My entire body is weak, as my immune system is extremely compromised. I am forced to wear facial masks everywhere that I go and use hand sanitizer like it is going out of business. The reason for this is because any amount of sickness or fever has a good chance of killing me itself. Something as simple as the common cold is all it would take do me in.
What ensued next were a series of two bone marrow biopsies. The first biopsy occurred about 30 days after the actual transplant took place. This first biopsy was to check to see if the cancer was gone and that the newly acquired donor bone marrow had taken hold inside of my bones and was producing the immune system of the donor himself. Before the results come in, my brain turns into a rollercoaster of worry and paranoia. Questions like: Did the donor take hold? Did it fail? If it did take hold, is it actually killing the extremely resilient and residual cancer that surely still remained in my body? Did any of my own bone marrow grow back? Is my bone marrow 100% donor? These were all huge concerns which were to be answered very soon. After what seemed like a month, a day or two later the results had come in and they were clean! No evidence of leukemia was found and further tests marked that 100% of my bone marrow was that of my donors’! Success! The transplant was a success!
I spend the next month or two recuperating from the bone marrow transplant. My body is pretty much withered down to nothing by this point. I had dropped over 50 pounds in a very short period of time and couldn’t even walk up a single flight of steps. The number of pills I had/have to take on any given day was and still is staggering. Despite that, as each day passed, I felt better and better. I was starting to feel “normal” again. It’s at this point that I would probably go off on a tangent talking about what “normal” means to me and how much value I place in the word, but for the sake of the structure of this particular journal, I will come back to it in the next blog. Things were improving so well, that in January I was actually cleared to go back to work and begin resuming my life as it were before I had relapsed.
As the weeks went by, the time for the 90 day bone marrow biopsy approached. This was absolutely huge. There isn’t much I have been through, to date, that measures up to the gravity of importance of good results from this upcoming bone marrow biopsy. I drove to Froedtert Hospital by myself to hear how things went. As I sat there waiting for my oncologist to arrive to break me the news, my heart was pounding and my mind was spinning out of control. The doctor walks in, and I can instantly tell something just isn’t right. The cancer was still in my bone marrow. My entire body went limp. I collect myself together, as I’ve had to do so many times before and we started talking next steps. If you all know me by now, that means fight this damn cancer. He goes on to explain that there is still evidence of leukemia in my bone marrow but at very low levels. Out of 10,000 cells, 200 cells were leukemia…comes out to 0.02%. By the end of the conversation, we had hopes that the newly donated immune system just hadn’t had the time or chance quite yet to kill the rest of them off. So the plan was to give the bone marrow some more time to finish the job. After all, that was the goal from the beginning – kill as much of the cancer as you can with chemo and radiation, and the donor takes out the rest. Next step? Wait some more.
As I worked to get my body back into shape from all of the abuse it just took with the transplant, I began developing mild to very severe migraines. The headaches would typically come on at night and last through the next morning…some of them so bad that I would vomit for hours on end. It wasn’t too much after that when I started noticing that I was also having sharp pains in my neck and legs. To top it all off, I developed one of the most aggravating and crippling full body itches that would NEVER stop. I would have traded almost any amount of pain to alleviate just a tiny bit of the itch. It’s that maddening.
Due to the migraines, bone pains, and itching, I had a nasty gut feeling that something wasn’t quite right. At each of my appointments, I continued to bring up all three concerns. Before I continue, know that I am very resistant to being admitted as a patient into the hospital and will do anything and everything that I can to improve my health at home on my own taking the medications prescribed. Despite that, I persisted with my doctors that I believed something was seriously wrong and we needed to look deeper into what is really going on. Not to sound arrogant, but when I start to worry, it’s a very good time for everyone to worry.
As I mentioned before about the itching, my oncologists felt best that we take a look into that problem first. My last bone marrow result was only showing 0.02% which meant the levels weren’t so critical that I was at the point of needing chemotherapy. So that’s what we did…we tried to get the itching to stop. I know there are a lot of you out there reading this right now that think that they have or had the perfect solution to make it go away, but that just isn’t the case. We tried absolutely everything you can think of. One day I joked with one of the doctors, “If I knew that eating a pile of dog sh*t would take this away for one day, I would eat it.” …sadly that’s the truth…it was THAT bad.
After my doctors felt that we had exhausted all of the options to treat the condition, I was sent to a dermatologist with 30 years or so of experience. I was surely going to find an answer there, right? Wrong. For the hour long consultation, she regurgitated every single word that every previous doctor had told me about my skin condition…ultimately just blaming it on dandruff and the like. I couldn’t stand it anymore. There I was as a patient of one of the most experienced dermatologists in the Milwaukee area and they were pitching me lotions. I was days away from taking a business trip to Daytona, Florida to spend 10 days representing Harley-Davidson and with as much worry on my mind, I made some appointments to get some scans done to put my mind at ease and that I would be just fine while working at Daytona Bike Week. I was all set and packed to go. Out of nowhere, I got hit with one of the worst migraines I have ever experienced. It is now Wednesday, March 7th, the day before I fly out. My beautiful wife, Cari, was very ill that day, so my mother took me to Froedtert to get an MRI done on my brain. After I had gotten my blood labs taken and seen my primary oncologist, they scrambled me over to a different clinic just to get this MRI done, because they were absolutely booked full of appointments at the hospital. My mom then proceeded to drive me back to my house in Port Washington.
Upon arrival, I gave my wife a huge hug and kiss and went straight upstairs to take a nap. I was absolutely exhausted and the headaches and itching were a 10 on the pain scale. While I was asleep, my mother went back up to Two Rivers. A couple of hours later, Cari woke me up to tell me something. I will never forget the look on her face when I saw her. In sobbing tears, somehow she uttered the words that the results from the MRI looked very bad and that they needed to do some further testing to figure out exactly what was going on. Within ten minutes we had our bags packed and were on our way back to Froedtert Hospital to further investigate the situation. Needless to say, my trip to Daytona was not going to happen.
So I was back in the hospital. Wasting no time at all, they immediately performed what is called a lumbar puncture, otherwise known as an LP. In short, they insert a needle into my spine, extract some cerebrospinal fluid and replace that exact same amount of fluid with chemotherapy.
For more detailed information on what an LP or spinal tap is click here. The reason they replace the fluid with chemotherapy is purely for a “what-if” kind of situation. At this point, without having the results of the spinal fluid, we really don’t know exactly what is going on with my brain. What we did know, is that the MRI results came back showing my brain membranes to be extremely inflated allowing for zero movement. Another reason for replacing the fluid is to keep the balance of fluid constant. Meaning, that if they remove 3cc’s of fluid, it is very wise to put at least 3cc’s back into the brain. Any unbalance of fluid typically results in very extreme headaches that can last weeks.
The next morning we received the results from the LP. My primary oncologist came into my room to break the news. “There’s no easy way to say this, Eric, but your cancer has come back…in your brain.” As I sit here trying to recollect the feelings and emotions, I struggle because my body was in complete shock. Because of this, I am going to quote some stuff directly from one of Cari’s blogs:
“The rest of the night didn’t go so well. Eric threw up all night. I slept in a make shift bed out of two
chairs, and then at 5am moved back to the palliative room for three hours of sleep. Weird how that
happened because I woke up and something said “get back to Eric.” I did. No later than I walked into
the room and sat in the chair-bed did his doctor come in to confirm the worst. Eric’s Leukemia was in
We cried, we hugged, we cried some more and then Mary finally came down. She was here for most of
the doctor visits. I was told we were meeting with the radiologist at 12:30pm so it was now 10 am and I
rushed out to get back to Port Washington to quick shower and grab me some stuff. I honestly made it
back just as transport was there to take him down to his consultation.
We had originally thought he had the maximum amount of radiation a person could ever have in their
lifetime. We were told by the radiation technologist that’s not the case. That’s for Total Body. Since
they were going straight to his brain and localizing it, they could do more. So he’ll be getting ten doses
of radiation, and chemo twice a week until his spinal fluid comes back clear. His cerebrospinal fluid had
90% leukemia in it. A normal person would barely have ANY cells in their CSF…Eric somehow managed
to get Leukemia in his. They fitted him with a mask so they hit the same spots every time and then sent
us back to his room. We were told he was going back down at 4:30 for his first radiation treatment.”
Early on, the radio oncologist made it very clear that the whole brain radiation that I was receiving was not going to pack a big enough punch to kill all of the cancer in the brain. Therefore, the oncologists made the decision to continue to administer chemotherapy into my cerebral spinal column and brain to give my body the best chances at eliminating this brain cancer. What they wanted to do next, which I highly objected to, was to perform brain surgery to install a device in my brain called an Ommaya Reservoir.
This gives them the ability to inject the chemo both into my spine and my brain. The importance of this is to be able ensure that the chemotherapy gets to all of the parts that it needs to. The day after the surgery, they used the Ommaya to give me the chemo. As I explained earlier, they extracted some CSF fluid replacing it with chemo. The next day we got the results.
The CSF fluid was clean! They didn’t find a single cancer cell in the CSF sample that they took. However, what they did find was a large amount of staph infection all over the newly installed Ommaya Reservoir.
Ultimately what this means is that:
a.) The Ommaya had to be removed from my brain immediately – more brain surgery
b.) The device itself wasn’t needed to begin with. It appears as if the radiation alone cleaned the brain
That morning they rushed me down to neurosurgery and removed the device. Despite the clean fluid that they found in the brain, it is protocol to continue to administer chemotherapy until three consecutive clean fluid results come back. Now that the Ommaya was removed and I am maxed out on the amount of radiation I can take, we were back to doing lumbar punctures/spinal taps to do it. A few days later we did another CSF fluid extract plus chemo….results came back clean again! It was at this time that I was discharged from the hospital and was finally able to sleep in my own bed under my own roof. A week or so had passed and I went into the hospital to receive my third and final dose of chemo for my brain. We don’t really recall who told us the results from the final CSF test, but we were told that the brain was clean and all three CSF results looked great. Cari and I went home to try to resume our lives as a normal married couple. During the middle of all of this, I had a bone marrow biopsy done to see how much leukemia was still in the rest of my body. Keep in mind, this whole time I have had two individual occurrences of cancer that have to be treated separately. The brain was chosen to take out first because the amount of cancer that was there was already at very lethal levels. The leukemia in my bone marrow was still on the backburner waiting to be treated. We were still holding out that the new immune system from my donor was killing off the rest of the cells that they found (0.02%).
On Friday March 23rd, Cari received a phone call from my primary oncologist. I was sound asleep in bed. Cari came into the bedroom to wake me up with the news. The results from the bone marrow biopsy had come in. The leukemia was growing. The transplant had failed. My chances at ever being cured have now basically hit zero. My doctor told us that we needed to come in on Monday to have a discussion about quality of life vs. quantity of life. Out of all of the doctors I have seen and gotten to know over the past decade or so, this particular one has ALWAYS had the FIGHT FIGHT FIGHT mentality. To hear him lose the hope really hit home hard and I spent the rest of the weekend in a total fog. To make matters worse, we were also informed that the third and final CSF results were wrong and I still have active brain cancer.
On Monday, my parents and my wife, Cari, came with me to discuss our options, if any, with my
oncologist. My options were as follows:
- Cease treatment and try to enjoy life as much as you can while you still can.
- Try to get into a Phase 1 blind study currently going on here at Froedtert – I was denied
- Go to MD Andersen in Texas for a different Phase 1 trial – 90% failure rate
- Go through the most intense chemotherapy regimen I have yet to date
For me, there was only one choice. I wasn’t about to sign up for one of the guinea pig studies and I sure
as heck wasn’t going to quit. Option #4 was the one and only route I was going, and within the 24 hours I was
back in the hospital getting treated with some of the worst chemicals you can fathom.
So that pretty much brings us to today. I’ve had a few hiccups along the way during this bout, but
overall Team McLean has been kicking ass. Later today they will be giving me some more chemo to my
spine to continue to treating my brain, and then in a few weeks I will be getting a bone marrow biopsy
to see how much of the leukemia we were able to kill in my bone marrow. The waiting is so hard. It is
entirely possible that the chemotherapy is 100% ineffective and I will actually have more leukemia than
I did before we started. It could go either way. Despite that, both Cari and I remain very positive and
hopeful that I am going to beat this. I will never quit fighting, and if there is anything any of you take out
of this particular journal, is don’t quit. Whatever it is you do, give it 100% and kick ass.