August 22, 2012

Four is my magical number?

Yesterday morning Mary and I were up early and on the road headed to Lincoln, NE. The purpose of our trip was to complete the enrollment for my fourth clinical trial, MDV3100. The drive was just over three hours. The travel was sure easier to look forward to than the planes, trains and automobiles that I have had to deal with in the past to reach the destination of the trial at hand.

In the days leading up to the trip I was slightly apprehensive because I am still dealing with an unbalanced equilibrium. Sitting in a car is better than walking, but not as comfortable as sitting in my chair reading or watching television. I tried not to focus on this and just loaded up on newspapers, magazines and anything I could load on my iPad. It seemed to help becasue the drive passed by faster than either of us expected. This was probably due to the anticipation we were both experiencing as we drove towards the destination that offered a new treatment, that offers us new hope.

I was a good fit for the trial inclusion criteria, but having been through this before, you just never know what could pop up on a test etc. and disqualify you for the trial.  Upon arriving, the staff offered us a warm welcome and were prepared to begin the preliminary tests which included a blood draw and an EKG. We spent approximately thirty minutes with the doctor. He was very knowledgeable about prostate cancer and obviously spent time reviewing my case, as he was familiar the the series of treatments and procedures that I have endured over the last seven plus years. 

The worst part of the day was the fact that we had to wait two and half hours after meeting with the doctor for the blood test results. So why all smiles in the picture? It's because what you can't see is the big vial of pills in my other hand! This picture was taken in the parking lot shortly after I was approved for the trial.  

So now we wait. Tonight I took dose number two. We are not sure how long before we see any measurable result,s but mid-September is our next trip to Lincoln. We remain hopeful that we will see positive results with this new treatment and that it will enable us to transition into some degree of normalcy. In the meantime, we are going to pursue a consultation with an ENT specialist to try to determine what is the cause of my issues with balance. Fortunately, the results of the brain scan and spinal tap were negative, so we are comfortable that it is not caused from any cancerous growths. It is greatly impairing my mobility, so we have to determine the root cause so that it can be treated. Taking it one day at a time!

August 17, 2012

More challenges

I'm not sure where to start....

Just when things seemed to be getting a little better last week, on Friday things once again changed. The only way I have been able to describe the change is my equilibrium is off. If I remain seated to read, watch TV or use the computer, things are pretty normal. When I get up and try to walk, I am not very stable on my feet. It's not dizzy, more a feeling of being unbalanced. It applies to standing up, sitting up or moving my head. Yes, it is limiting me just a bit.

I made it through the weekend and on Monday I had my monthly oncologist appointment. After going through a few tests in the exam room, Dr. V ordered an MRI of my head and upper spine. It was all clear. He sent us home with two prescriptions to try to treat the symptom, even though we did not know the source, but after a few days, there was no relief.

Tuesday, we went to the Medical Center and I had my kidney stents replaced. It is hard to believe that three months have passed. The procedure went very smoothly. The surgeon reported that everything looked clear and he suggested that based on the condition of the stents that were removed, we can wait 4 months before we have to go through this procedure again. Obviously, I don't want to go through this any more frequently than I have to, so this was good news.

Today we went back to the hospital for a spinal tap. Dr. V wants to make sure the cancer has not spread to my spinal fluid (extremely rare). Right now this is about all we know. We don't fully understand what all of the possible sources of this new symptom are. We are just hopeful that it is something that will be easily treatable.

In addition to fighting this new issue, I am still in the battle to get the prostate cancer under control. My PSA is now up to 1,200. Given my last visit to the hospital with a blood infection, we are not ready to start chemo again. We are anxious to start a clinical trial for MDV3100. It is a treatment that we have been tracking for a while. Logistically, the closest medical facility offering this trial is in Lincoln, Nebraska. It will be a 3 to 4 hour drive each way, but at least it does not require a plane ride to get there.

The last week has been exhausting for our family, but we continue to be optimistic and are hopeful that we will find the right treatment that will allow me to get stronger and move towards a more stable daily regimen.

August 01, 2012

There's no place like home!

After ten days in the hospital ,I was released and returned home late Monday afternoon.

I have to admit, I was a bit apprehensive to leave this time. Yes, there is nothing better than being home, but after everything I was treated for, I felt secure that I was being taken care of and if something else were to go wrong, I was confident that my medical team was there to take care of me. There were so many medical issues, that it became overwhelming for me mentally as well as physically. The staff on the Oncology floor at KU Med Center is top notch!

After two days, we are settling in to a bit of a routine, but I have a long road to recovery. What became obvious real fast was how quickly a week in the hospital can drain one of strength. I had a visit from a physical therapist yesterday and have already begun to slowly work on some light exercises. Mary and I were reassurred after she tested my strength and balance. She indicated that I was stronger than she expected me to be. I hope to work towards my morning walks with Mary up to the end of our street, and hopefully further.

The rest of this week, as well as the next, we will focus on recovery. After that we will meet with my oncologist on the 13th to determine what treatment plan I begin and when I begin. Also, we will be preparing for my scheduled procedure to have my stents replaced on August 14th. Yes, three months have already passed.

The road ahead is sure to a rough one, but I have Mary at my side, and God leading the way. It won't be easy, but neither have many, many parts of this journey battling prostate cancer. I would like to express my sincere appreciation to my brother and sister in law for their vigilant support  for all of us during a very difficult week. Also, I'd like to thank you all for the encouragement and support that you have shared with us over this last week, as well as over the past 7+ years. The battle is not over!