As most of you have already read or heard, I have relapsed once again. This will now be the fourth individual bout with cancer that I will be fighting through the coming months. Before I go on, I really should give some of the back story to how this all came about and how I found out to give some additional insight and clarity…so bear with me.
Over the past six months or so, I had been having some pretty significant pain in my right hip joint area. Figuring it was just an athletic related injury, I thought nothing much of it and continued relatively normal activity. I reduced physical activity and exercise under the assumption that the hip would heal with the additional rest. It didn’t. In fact, the pain got worse. It got so much worse that I finally scheduled an appointment with a highly recommended orthopedic surgeon at Froedtert Hospital to take a look at it.
We began with a simple x-ray that was looking for tears or strains on that area of my hip. The results came back negative and the doctor recommended that we escalate to do an MRI on the hip, suspecting that there might be some kind of necrosis going on which is related to some of the treatment that I had. Reluctantly, I agreed to get the MRI done and went in about a week later for the scan. I got the results back and discussed them with the surgeon. He pulled up the images on his monitor which revealed a very telling story. Sure enough, there was already advanced avascular necrosis present in my right hip.
The image below is a slice from the MRI of my right hip. The round piece is the top of my right femur. The rest of it is muscle tissue and my pelvis. If you look at the round piece, otherwise known as the femoral head, you can see dark areas that are crumbling and cracking. That is the AVN (avascular necrosis).
As all of us walk and run we exert downward force and pressure on the femoral head. That downward force actually creates tiny cracks. With proper blood supply, these cracks heal quickly. This cyclical process continues over the entire course of our lives. The bone cracks and heals constantly. However, one of the drugs that I took during my treatments actually cut off the blood supply to that part of my hip. This means that all of the downward pressure that I put on that piece of my hip continues to crack while failing to heal. Over time, these cracks build up and the hip becomes brittle. The surgeon told me that it was in a stage that was actually on the verge of “collapse.” It was very clear that something had to be done. That “something” was a total hip replacement. I scheduled the surgery and began all of the paperwork at work and at the hospital to get the ball rolling as the pain had been worsening.
During all of this, my primary oncologist for the past seven years told me a couple of months ago that he made the decision to move back to Ottawa, Canada to head up the transplant program there. The large majority of his family is from Ottawa, and if he were to ever have left Froedtert, that is the only place he would have gone. The lead oncologist from Ottawa, who was also a close colleague of my doctor, was retiring, and the career opportunity opened up. He accepted the offer and was in the process of relocating back to Ottawa. When he told me that this was all going to be happening, I pretty much broke down. The man that had kept me alive for the past seven years was no longer going to be my primary physician. It felt like I was losing a family member.
His last day at Froedtert was last week. I have been getting bone marrow biopsies about every three months. It was about two months since my last one, so the combination of the upcoming surgery and the three month timing, we decided to do a bone marrow biopsy. Like I said, we needed to do the biopsy prior to the hip replacement because the surgery would most definitely have to be postponed if any cancer were present. Additionally, I think a small piece of him wanted to do the biopsy so that he would have some peace of mind in knowing that he was leaving Froedtert and one of his closest patients in good terms. The biopsy was done on Friday – January 7th, 2011.
The biopsy itself was a pretty typical operation. I lay on table. Doctor makes some incisions in my lower back. Doctor drills holes into bone with corkscrew. Doctor extracts bone marrow and aspirate. I wince. The one difference this time was that for whatever reason when he drilled the first hole a crappy sample came out. Therefore he had to repeat the whole process to the other side of my lower back. Double the pleasure, double the fun…
That same day, there was a going away party for Dr. Bredeson that one of his patients had arranged at a local Mexican restaurant that the patient owned. His closest staff and patients were in attendance at the party. There was a lot of great food and tequila shots being passed around and consumed. We had a wonderful time that night. I was very sad to say my final good byes. Below is a picture I drew for him as a gift…
The next week I went back to work to resume normal activity and began preparing for my hip replacement which was scheduled for Thursday – January 13th, 2011. As the days progressed, I really hadn’t thought much, if at all, about the results of the biopsy. It’s pretty typical for Cari (my fiancée), my mom, or even myself to be poking the hospital to get the results of the biopsy. However, with the hip replacement on the horizon, the results were really the last thing on our minds.
Wednesday – January 12th, 2011
I was at work and working hard to get as much done before I went on short-term disability. My work desk phone rang with a phone number that I did not recognize. I answered it. It was Dr. Bredeson calling from his personal cell phone number. I knew something was up. He had a tone in his voice that will stick in my mind forever. As he himself was nearly breaking down in tears, he began explaining the biopsy results to me. “Eric, I have some bad news…” I felt like I was just sacked by Clay Matthews at about 100 miles per hour, staring up at the sky, lying on the ground in total shock and disbelief. It was extremely difficult to control myself to continue talking to my doc. He told me right off the start that the oncology team would be working with the orthopedic surgeon’s office to cancel all of the hip replacement my stuff as that was now the least of my worries. He went onto saying that the blast count in the biopsy was at 1% and that we would be starting treatment on the following Monday – January 17th, 2011.
The treatment that was chosen wasn’t chemotherapy or radiation. The blast count was low enough that we could try something different. The course of action was DLI – Donated Lymphocyte Infusion. Click HERE for more information on DLI. The theory behind DLI is to promote something called Graft Versus Host Disease (GVHD). GVHD is a complication in which the cells from my donor (Lindsey) recognize my body as being “foreign” and mount an immunological attack on my entire body. Sounds bad, doesn’t it? That’s because it is. The overall survival rate of GVHD is 42%. That means that we are trying to induce something that has a about a coin flip chance of possibly being fatal. So you might be thinking, “Why the heck would they WANT to induce something that is that bad?” Well, because the silver lining to the GVHD is that it has a chance to also trigger something called Graft Versus Leukemia Effect or Graft Versus Tumor effect (GVT). This is where the infused T-Cell lymphocytes attack the malignant cancer cells in hopes of achieving remission. Being that I was only at 1% blasts in my blood, DLI has the best chance of success without additional chemotherapy or radiation. If the levels of blasts (cancer cells) were higher than 1%, we would first have to resort to chemotherapy and/or radiation to knock the blast counts down to 1% at which time we could then attempt DLI.
Thus, yesterday, I received about 90,000,000 T-Cells from my stem cell transplant donor and sister, Lindsey. She had donated cells awhile back and they still had two whole bags of cells frozen. I showed up at the hospital at about 9:00am to get some blood labs done and then headed over to the day hospital outpatient treatment area to receive the DLI. When I got there, the cells were still actually in the freezer as they forgot to call in the order to get the whole process rolling. Ultimately, I had to wait until about 12:00pm until the cells were ready for infusion. As I was waiting in the room with Cari, everything started to sink in. I sat there staring around the room. Very quickly, I began to remember all of the horrid memories over the years inside rooms that looked just like the one I was laying in. I took one look at Cari and she knew right away that I wasn’t feeling good about any of this. We both pretty much broke down and embraced each other.
(not looking very happy)
After a short while, we regained our composure and resumed waiting for the cells to arrive. As we were waiting, a truly awesome surprise walked through the door. It was Larry Hisle. For all of you who don’t know Mr. Hisle and the friendship that we share, Larry is a former Milwaukee Brewer who played for them in the 70’s and 80’s. I met Mr. Hisle in 2009. The Brewers organization contacted Larry asking him if he would be willing to go to Froedtert Hospital to visit a diehard Brewers fan that is going through some rough times. That was the beginning of a wonderful friendship that has developed and grown over the last couple of years. He sat down beside me and once again, I lost it. That whole morning was a crazy emotional rollercoaster that almost wouldn’t slow down. We talked for hours. He is, BY FAR, the kindest, most humble, hardworking man I will ever meet in my entire life. There are no words to describe how grateful I am to have met him and befriended him. The day wrapped up and I went home, saying bye to Larry.
In about a month we will do another bone marrow biopsy to see if the DLI was successful. Between now and then I will be taking a lot of medication to control the GVHD and possibly receiving inpatient care if or when the GVHD flares up. The total amount of cells that I received this time was a much larger amount of cells than what was given to me in 2010. I’m hoping that my new oncologist is coming up with a plan during this time in case the DLI fails, so that if that day should come, that we know exactly what we are going to do without any second guessing.
To wrap things up, I just wanted to thank each and every one of you out there for all of your support and prayers over the past week or so. I will do my best to keep you all updated and informed.
Love,
Eric