Tuesday, September 5, 2017

An Overdue Update

It has been a long time since I last posted. A lot has happened since finishing Proton Therapy on August 4th. During this time I have started a new chemo regimen and been admitted to the hospital twice for complications. So you know, not much going on! About 2 weeks after completing Proton Therapy, I began having pain when I was eating. It felt like I was swallowing razor blades in my esophagus and stomach. If you have been following along, you know that the tumor that was being treated with the Proton Therapy was pressed up against my esophagus and heart. Shortly after the pain began, I started to have some bleeding. That was the signal to head into the hospital. They performed an upper endoscopy and saw a large ulcer towards the bottom of my esophagus.  Basically my esophagus was collateral damage from the proton therapy. Thankfully, the bleeding stopped shortly after. I was eating soft foods and liquids for about a week before I was back to normal foods. I recovered from this much quicker than I expected. This was very scary because I knew this had the potential to get very bad. A tear in the esophagus would have led to major surgery and strictures could have caused chronic issues with eating and swallowing. Thankfully we have escaped with just a bleeding ulcer that healed quickly.

Once I healed from this, we quickly pushed to start the next step of treatment. My doctors in Buffalo and NY discussed my case and gave me a couple options. We chose to try a chemotherapy regimen that I have not done yet with the hope we will see some better results compared to the regimens I have already tried. This regimen includes doxorubicin, a first line drug that I have had before, and olaratumab, a drug the gained fast track approval last year for sarcomas. Olaratumab is a monoclonal antibody. These are lab produced molecules that mimic the body's immune system to help kill cancer cells in several different ways, depending on what the molecule targets. Olaratumab blocks a certain receptor on the cancer cell to inhibit tumor growth. Doxarubicin is a chemotherapy that has a lifetime limit on the dose I can receive because it is very taxing on the heart. Thankfully I haven't reached that limit yet and there is another drug I am given that helps protect my heart as well. I had my first dose of these drugs on 8/25 and was scheduled for the second dose on 9/1. However, my absolute neutrophil count (ANC) was too low to receive the dose. These drugs cause myelosuppression, especially neutropenia. Myelosuppression is when your bone marrow activity is decreased causing your blood counts to fall. This includes your red blood cells, white blood cells, and platelets. One of the most important types of white blood cells are neutrophils. These little guys are our first line of defense against bacterial infections. When these drop below a certain level, the patient is considered neutropenic and a very high risk for infection. A small infection a normal person would probably never even know they have, can be deadly if left untreated in a neutropenic patient.

So we held the dose on 9/1 and then on Sunday 9/3, I spiked a fever of 100.8. This led to my second admission this month. My white blood cell count had dropped to 0.23 which is very low and I did not have an ANC. My platelets also dropped down to 23 which led to me getting a platelet transfusion Monday. Shout out to whoever donated those platelets! This is the point where I tell everyone to go donate blood and platelets, especially at Roswell if you can because all donations are used here.

Anyways, I have been feeling a bit better today, just very tired. I am still admitted waiting for my counts to come up. I am taking a growth factor injection everyday to help boost my neutrophils, but so far they have not wanted to grow!

Tomorrow is my 30th birthday. I am hoping that my bone marrow will give me a gift tonight and allow me to get out of here tomorrow! If not, I will just have to be patient. I can't believe I am turning 30. It certainly snuck up on me. I know some people get depressed about turning 30, and I certainly would love to be 25 again! However, as I look back on my 20's and all that they were filled with, I am very proud. Lately, I have struggled with staying positive and to say that I have had some bouts of depression would be an understatement. But as I look back on everything, I know I have accomplished a lot the past ten years while battling this disease. I accomplished every goal I set for myself, married my beautiful wife, and made a beautiful daughter who is the world to me. This disease has taken a lot from me, but I am trying to focus on all the good I have in this life. Sometimes it gets hard and it gets dark, but I have a lot of light left to keep fighting for.

So bring it on 30! The statistics said I wouldn't see 25, lets go see what 40 is like!

Thank you all for following along, I'll try to update when we resume treatment. Also, thank you again to those who donated to us even this past week. We continue to be so lucky to have the support of so many good and caring people. I want to thank all of my former co-workers that are taking care of me this week. I usually stay on my old unit when I am admitted and I'm lucky to have such great nurses, who are also my friends, take care of me.

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