1 Year Later
On June 3, 2015 I found out I had relapsed Acute Lymphoblastic Leukemia. It’s interesting to think about everything that was going on 1 year ago. Friday morning I was reliving the timeline of going to see Dr. Cripe, finding out I had relapsed, contacting work, calling family and preparing to be admitted on the 4th. Last year for dinner on June 3rd we ate at Chicago’s pizza (one of our fav spots) knowing that the next morning I was going to be admitted for chemo and had a battle ahead. This year for dinner on June 3rd we once again headed to Chicago’s pizza but this time to celebrate. There would be no waking up to chemo on June 4th this year. There would be sleeping in and plenty of play time with the kids.
A relapsiversary isn’t something you celebrate because of the cancer that caused it to be necessary. However you do celebrate a relapsiversary because it is a sign you’ve survived for another year. Here’s to no more relapses, but plenty of more relapsiversaries in my life.
For all of this year, I have been receiving Social Security Disability Benefits (thank you for paying your taxes!). I recently started back at work, which means I now have income to report to the Social Security Administration. In true government fashion, they sent me forms to fill out. I received the forms on 5/31, with instructions to return them within 15 days. There was also a number to call so I could ask questions of the Social Security person assigned to me. Well Friday I had questions so I dutifully called the number. Of course it went to voicemail, which I was expecting. What I wasn’t expecting was the content of the voicemail message. While not verbatum, this is essentially what was said, “This is <name redacted> from the Indianapolis Social Security Office. I will be out of the office until June 13th. Do not leave a voicemail while I am out, as it will not be returned.”
Well there you go. Government service at its finest. No “thank you for your call.” No “please contact so and so in my absence.” No “I’ll gladly get back to you upon my return.” Just a message that says “I’m gone and you’re SOL.” Thanks Obama.
Get Your Rob Spayed or Neutered
Chances are after chemo in 2013, chemo in 2015 and radiation in 2015, that all the swimmers have left my pool. But in situations such as these, there could be a few survivors and potentially some malformed swimmers that are looking to participate in the medley. And we all know it only takes one to finish the race. Thus a couple of weeks ago I made a visit to the doctor and lay there spread eagle while he removed the balls from the cannon so to speak. Thankfully we have 3 happy and healthy kids already so there wasn’t too much debate. It’s interesting to look back and see how we went through 4 years of infertility to have the girls in the summer of 2011. While we planned to maybe have another kid 2 years after that, Tucker came along as a surprise and was born in the summer of 2012. Six months later I was diagnosed with ALL. We always wanted a family and God granted us one just after Lindsey’s difficulties getting pregnant and just before chemo cleared my pool of swimmers quicker than a floating snickers bar. Thank you God for our 3 precious gifts.
On thing that continues to nag at me is the ability to recall facts or hold on to some short term memories. Some people will call this old age or say it’s a normal thing for them, but it was never a normal thing for me. I used to be able to recall facts with ease. At work, I could tell you about a meeting and decisions from a few months ago or sometimes a few years. I would read and absorb facts with no trouble. These days it’s not like nothing sticks. But I have to be more diligent in taking notes and re-reading the notes later on to remember what happened and any follow ups I have. This is pretty common for someone who has undergone chemo and radiation to the brain. Unfortunately there is no cure or quick fix. Most of the advice is to write things down and develop habits like leaving your keys in the same place all the time so you don’t lose them.
Nice Throw Peyton
Remembering things was kind of my super power in the past. That’s why I don’t take too much comfort when people tell me it’s old age or normal. For me it doesn’t feel normal. Let’s put this another way. Let’s say Peyton Manning and I were standing on the 20 yard line a few years ago when he underwent neck surgery on his nerve. After that surgery it was well reported that he couldn’t throw the ball very far at all. So there Peyton and I are the 20 yard line and we both throw a ball towards the endzone. Both of our throws land short of their targets. Am I going to turn to Peyton and say “It’s ok, it’s old age and I never could throw that well anyway.” No, because both of our abilities are different. I’m throwing my normal wobbler and Peyton would be throwing hindered by his medical treatment. It wouldn’t be a normal throw for Peyton, just like I don’t have my normal memory because of chemo and radiation. Now obviously old age is catching up with Peyton, but he can still throw a ball way better than me now that he has had time to heal. Hopefully my memory will heal as well.
And the Powerball Numbers Are
For the first time in a long time, I managed to have all normal labs the other week. Sometimes one or 2 would be normal, but never all 3. Of course now that my CBC values are normalizing, my CMP values are going a little sideways. Specifically my liver enzymes have started to climb. This could be because of GVH or it could be something else. They are above normal, but still way low to be considered dangerous. For now we are going to monitor them and if they continue to go up, they may do a liver biopsy to confirm GVH.
A Duck Dynasty Prayer
Thank you God for another year. I’m now 3.5 years post my initial diagnosis and 1 year post relapse. Not everyone achieves that longevity after being diagnosed with ALL and many would still be battling at this point. I sit in awe of your grace and beg for the same healing to be bestowed upon others. Thank you for a summer of time with my family rather than time with nurses and doctors. Thank you that when I get in my car I can head to work instead of the hospital. Thank you that I don’t have to walk around with a tube coming out of my arm or hooked up to a pump 24/7 that’s hidden away in a backpack. Thank you for letting me enjoy the normal troubles in life. Thank you for another day.