15 Day DL

Wednesday, July 13, 2016.  It has been 15 days since my last post.  At the time, we were gearing up for another chemo grind that started Wednesday June 29th and effectively ends today.  There were 8 treatments in 11 days (Wednesday through Saturday of both weeks); the cherry on top is a spinal tap and shot of Vincristine today.  We also just learned that based on my blood work this morning, today I am going to need tw0 rounds of platelets (before the spinal tap to avoid blood clotting), as well as two more units of blood (i.e., bags of an unknown person’s blood) to address my low hemoglobin numbers (all of which was to be expected and will actually necessitate further platelet and blood transfusions on Friday and Sunday).  [By the way, special thanks to all of those out there that donate blood — never realized or appreciated how important that actually is].  After three blood transfusions over the last 14 days (and five before that), I am becoming adept at identifying when I need to stop at the gas station for a refill; I bruise easily when my platelets are low (especially from Lovenox) and I start getting dizzy after even brief activity when my hemoglobin is low (going up the stairs, taking a shower).

[Disclaimer:  I am not regurgitating all of these details to complain.  Although I do complain (especially to my wife and family), I am not a complainer.  But I want to explain why I went on the DL for 15 days.   And, more importantly — at the appropriate time — I want my kids to be able to truly understand the specifics and details of what went on this spring and summer so they comprehend why I couldn’t coach baseball, missed various games and was generally inactive.  Finally, if anyone out there is going through a similar course of treatment, hopefully it is helpful to understand how my body (and mind) reacts at various points along the way (keeping in mind that, of course, everyone is different).   I have felt the utmost highs — especially at the beginning when I got out of the hospital in record time, was able to connect and reconnect with so many different people throughout my life and, other then mouth sores, had very little physical impact from chemo.  To the lowest of lows (at least so far) — at some point right before this last round and especially during the first week of this nine course meal when I did not leave my bed and have felt (and noticed) the affects of not working out for three months.]

Major League Baseball has both a 15-day disabled list and a 60-day disabled list.  Players can be moved from the 15 to the 60-day disabled list, but you cannot move a player from the 60 to 15-day disabled list.  I am thankful that there will be no transferring to the 60-day DL as I actually feel good today — even before we found out that I needed platelet and blood transfusions today and the rest of this week.

But the last couple of weeks were rough.  Before yesterday, when Jen and I walked 2.5 miles outside, I had not been active since early June.  [This was when I had back-to-back hospital stays for dangerously low hemoglobin and a neutropenic fever that was caused by parainfluenza.  Just when I started feeling better we had the blood clot issue down at the Shore.  I am still shooting Lovenox into my nonexistent twice a day to help clear up the clots.  Yesterday, however, we turned the corner and it felt good to be active.  Following a few days lying flat after the spinal tap today, I am planning to remain active and get back to my basement gym.]

The most recent bout of inactivity was caused by a total lack of energy and extreme nausea.  I remember Jen telling me she was nauseous when she was pregnant with Jake and I usually just brushed it aside.  She would eat something and it would subside for the time being.  Her vice back then was Cheese-Itz.  Let me tell you, I have a newfound respect for Jen and each and every pregnant woman in the world.  The nausea I had the week of June 27th was awful.   I could not eat and barely drank for several days.  It was a constant sensation of needing to throw-up, yet there was nothing to throw-up (other than a few times, including on the sidewalk and in the bushes at the hospital).  And when you are feeling blah and lacking energy from the prior rounds of chemo, not eating and feeling nauseous only amplified the blahness and lack of energy.  Even talking would lead me to drive heave (sorry about that Jen!).   My father was in town driving me back and forth to treatment that week (which we greatly appreciate); I rarely spoke to him in the car and on multiple trips I slept in the backseat [partly because I felt like crap, but also partly because he rides the break with a heavy foot].  He did, however, get a gold star for cleaning up a solid amount of throw-up near our front steps when we got back from treatment on June 29th.  Now my Dad and father-in-law have both cleaned up my throw-up within weeks of each other (and I was totally sober both times).  I wonder if anyone else can make that claim?

My bother-in-law and sister-in-law drove the boys down the Shore for the July 4th weekend and Jen and I really appreciated the entire Nelson clan hanging with the boys (who had the best weekend) so we could have a few days to relax together after my treatment on Saturday July 2nd.  After experimenting with a new anti-nausea medication that Friday, my appetite came back late Saturday and I was able to start eating again.  I had gotten down to 174 pounds so having an appetite back was welcome.  But while my appetite came back over the weekend and has been steady this past week and a half (back up to 180 this am), my energy level was still pretty low.  And while I was in bed or planted on the couch for much of my Mom’s stay last week with bouts of nausea and low energy [very much appreciate her being here and shuttling me back and forth for treatment (we know how much she loves to drive in NYC) and doing everything else in between], by the end of the week it was to the point where I had some energy to focus on things that I had ignored for weeks (paying bills, reading a book, actually being able to focus on a movie or show).

The constant through all of this has been the continued support from friends and family, which keeps a smile on my face.  I am forever grateful and indebted for everything.  Even when I am not feeling well enough to see everyone, I am humbled by the support and concern.  It means the world to us.  This “process” (and cancer generally) is frustrating and at times depressing.  All I want to do is go back to my daily grind and typical weekend routine.  The lack of energy brings out qualities, like laziness and irritability, which are not qualities that have or ever will define me.  I want to take those moments and feelings and lock them away without a key.  Yet at the same time, and sometimes moments after feeling lazy, you are constantly reminded of the little things that matter so much more (like reading a book to Ryan and Brandon last night, which I wasn’t able to do for a bit, or writing a letter to Jake at camp).   So every time I get down or frustrated, I put my imaginary “perspective goggles” on [makes me think of Brandon’s Teenage Mutant Ninja Turtle swim goggles that he would wear all day if we let him] and realize that I am one lucky guy because of the support system of family and friends that I have by my side.  I cannot thank all of you enough.

I saw very little of the Major League Baseball All Star Game last night.  In fact, I turned it off to eat dinner after Kris Bryant homered in the first inning.  When I turned it back on, it was the 5th inning and Major League Baseball was running a segment on Stand Up To Cancer.  The next thing you see is every player and fan at PetCo Park holding up a sign that says “I STAND UP FOR. . .” with a blank to fill in the name of someone affected by or otherwise battling cancer.  It was pretty moving to watch the cameras roll through the stadium with more than 40,000 people holding up these signs.  Our news headlines these days are dominated by repeated terrorist attacks, more troops being shipped to the Middle East in response to those attacks, and alleged racial profiling in connection with the deaths of Philando Castile and Alton Sterling, which was immediately followed by the shooting deaths of five white police officers in Dallas — allegedly motivated in direct response to the recent deaths of Messrs. Castile and Sterling.   Cancer, however, is not racist or otherwise religiously motivated.  Just come to the waiting room on the third floor at NY Presbyterian Hospital or better yet watch the replay of the camera scrolling through PetCo Park last night; people of every color, size, shape and religion know someone that has dealt with or is otherwise dealing with cancer.  Wouldn’t we all be better off focusing our time, energy and recourses on curing rare diseases that affect people across the globe?  Obviously I am not the first person to ask this rhetorical question, but watching the Stand up to Cancer segment last night sure made me wonder more than I had ever before.  I guess I had good reason to pause and take a deep breath….

21 thoughts on “15 Day DL”

    1. So great to read your blog tonight and so happy to hear that you are done with the 15 day DL. Here’s to your continued strength of mind and body! We send our love!

      Like

  1. Hi Josh,

    I just came across your blog and wanted to reach out and let you know I’m thinking of you. I’m sorry to hear your going through this very difficult battle but keep strong! I know you will beat this with your positive attitude and amazing support team of your wife, 3 adorable boys, family & friends. They will all help you every step of the way to win this fight!

    I read all your posts as tears rolled down my face as I was somewhat able to relate. Cancer also hit way too close to home as my daughter Sydney was diagnosed with a rare form of childhood cancer at 4.5yrs old called Rhabdomyosarcoma. She underwent a 9hr surgery to remove the very large mass in her abdominal area(mass in diaphragm) at Memorial Sloan Kettering Cancer Center. Post surgery she underwent weekly chemotherapy for 11 months. Sydney was a rockstar and she was determined to win the battle. And that she did… She will be 9 yrs old in October and cancer free for 3 years!

    I’m sending positive vibes your way.
    You got this! Be strong!

    Best,
    Jaime Hassenbein (Feuerstein)

    Like

    1. Your daughter is a rock star (as are you and your husband). I cannot imagine a 4.5 year old going through what you described or being the parent there every step of the way. I am so happy to hear Sydney is doing well and cancer free. Amazing.

      Thanks so much for reaching out and sharing. I really appreciate it. I was thinking about the last time we ran into each other; think it was a birthday party in the city and we had a common connection, but I can’t seem to remember who it was! Anyway, I really hope all is well with you and your family after what clearly was a very difficult time. So great to hear from you. Best to Sydney who is a true hero.

      Like

  2. So happy to hear your voice again Josh, I missed you and think about you every day. Sending you love and light…..

    Like

  3. Wow! It seems like you’ve had a rough few weeks, but I’m so glad to hear you are feeling better. I totally agree with you that we should all be focusing on what we can do to cure this disease. I have a very dear friend who was also diagnosed with a very rare cancer 9 years ago and I know that it is such a process of physical and emotional highs and lows as you say. I am so rooting for you Josh and wishing you the prospective you spoke of to enjoy the good moments and your amazing family. I think your blog not only helps people going through similar experiences feel less alone but also think your boys will one day read this and see how strong their father is…

    Like

    1. Thanks much Alex. Really appreciate it. Disappointed, but I am not going to be able to make it to the reunion. Hopefully you are going. Would be nice to catch up with everyone 20 years later; I guess I will just have to make the 30th! Thanks for all the support.

      Like

  4. Welcome back to blogosphere. We missed you. Pulling for you everyday and totally agree with your perspective. Whenever bothered by the mundane remind myself to focus on what is really important in life. Go Team Suss!!

    Like

  5. LOVE READING YOUR BLOGS SO WE CAN HEAR HOW YOU ARE DOING. LOVE YOUR STRENGTH, STAY STRONG THOUGH NOT EASY. ALWAYS REMEMBER YOU ARE LOVED LOVEABLE AND VERY LOVING AND WE ARE ALL ROOTING FOR YOU, JEN AND YOUR BEAUTIFUL FAMILY.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s