Summer Countdown and an Update on Abs

What.A.Summer.

Abby rolls her eyes EVERY time I do it. But ya know what…..I don't care!

(The above statement applies to all of the following: Play Golf, Sing (badly), Swoon for Matt Lauer, Cuss, Fart, Drive 5-10 Below the Speed Limit, Pick Judd's Outfit, and Take 32 Minutes to Eat something that took everyone else 11). However, none of these are the subject of this post.

I like to ask thought provoking questions. I like to see what drives people. What makes people tick. What's a dream that somebody wants to achieve. I am pretty much the world's worst small talker. "How are you today" or "Man, how about this weather" pretty much take me nowhere in a conversation.  Instead, I like to ask my friends these kinds of questions…..

What's something you have to do in the next 5 years?
What's the Top 5 on your bucket list?
What are your Top 10 Moments of your 20's?

Is it lame? Maybe. But, it works for me. Just the other day I was talking to a buddy I hadn't seen in a decade. I asked, "So dude, can you give me your Top 3 for the last decade?" His replies….

1. Opening my own business. 2. Saving a kids life by aborting my mountain bike and breaking my arm. 3. Being President of the Ocala _______ Association.

My mind was blown.

A few years ago we're sitting on the beach with a group of our best friends. Once again I posed a question… "What do you HAVE to do in the next 5 years?"

Some of the answers: Run a marathon, Open my own Practice, Have a baby, Finish my Master's, Quit my job, Match for my Doctoral Residency.

Ya know what……many of those things have happened, and it's awesome to see when you know these accomplishments were somebody's dream. Soooo, I'm going to keep it up. And guess what….

I think I'll start with today's blog post. 

So, as I mentioned. What.A.Summer! We've journeyed all over the state. We've had some great, good, and bad times while we were home. We've taken some great pictures and made some great memories during this Summer of 2014. So, I have to ask myself…..

What were the Top 10 Events during the Summer of 2014? 

I've searched my soul and provided my "Summer Top 10 Countdown" below. However, I first must provide a necessary disclaimer: All content below is the exclusive opinion of M. Ross Jones. Abby Jones will likely disagree with some of the content. Abby Jones is banned from any sarcastic comments while reading this post. Bruce Jenner still likes facelifts. 

On to the Countdown……

10. Matching Shirts and a "New" Kind of July 4th

I walked into my bedroom and there they were…..Matching Shirts…….Ugh! Can this really be my life? The answer…..darn skippy! Some of our friends gathered in Apollo Beach for the July 4th weekend. We wore matching shirts (and thus my dignity is forever gone). We also celebrated July 4th in a much different style this year. No longer do we spend all day enjoying cocktails and fireworks. Instead, these days we change diapers and chase our kids. After the kids go to bed, we enjoy a quiet meal. And after that quiet meal, we go to bed (without even seeing the fireworks). Photo evidence provided. It was certainly a great weekend!

9. Surprise, Surprise

So one of our great friends was turning 30. Thus, we needed to go big. We needed to go bold. But as myself, Abby, and his wife were discussing 30th Birthday Party ideas - the hopes of a great time appeared bleak.

Not so fast! Just then it dawns on me that an 11th story Beach Condo was available for us on his birthday weekend. And then, operation Birthday Surprise went into effect! Ya see, two great friends (whom we rarely see) each decided they'd get a hotel room near our condo and SURPRISE our buddy on his birthday. One making the drive from Ocala….one catching the Red Eye from Washington D.C. The logistics were complicated but feasible. AND, the plans ended up going off without a hitch. For one day and one night, many of us were together for the first time in years. Happy 30th Ahrens!

8. Girl Time

Guys need guy time….girls need girl time too. Unfortunately for you ladies, us dudes probably get way more of it than we should, and certainly way more of it than you do. Abby recently had some great times with her sisters and some of her best friends. Judd and I barely survived without her, but I know this was important for Abs. Thankfully, I believe the "girl time" was quite tame (or at least the parts I was informed about were tame). We were also blessed to have "Aunti Mindi" down from The Big Apple for a visit, and for us to finally interrogate the new dude in her life. Wish we had more time.

7. Ketchup

If you missed this picture sequence in a prior post, then today is your lucky day! Judd Jones trying ketchup for the first time cracks the Top 10 at Number 7. I still laugh out loud every time I see this picture sequence. And for the record,  I absolutely REFUSE to use "LOL".

Before

After

6. Sunset Cruise

Do you know who is the best kind of friend to have? A friend who owns a boat….a nice boat….and lives on a canal leading directly into Tampa Bay. Judd had never ridden on a boat before this summer, but we can officially cross that off the list! We took a sunset cruise earlier this summer with our great friends. The weather was great, the water was beautiful, the dinner was magnificent….and even better: Judd didn't fall overboard! All in all….a really great night.

5. Lingering

Ok I am just going to admit it. I own 3 David Hasselhoff CD's. I am an old man. It's true….I have always been the "Dad" of the group. I've probably missed out on a lot of fun times over the years by being a stick in the mud. But, being an old man also has some benefits. I've kind of turned into a "Lingerer". On a side note….Linger….by The Cranberries….Freakin Awesome Song!

Anywho, I like to linger. And, thanks to Steve Jobs, I get to capture a lot of memories on my iPhone as I linger. Below are some great memories from this Summer, all made possible by being an old man.

That Darn Bird

4. Tide Pools

Abby, Judd, and I took a trip to Crescent Beach a few weeks back with my parents. More specifically, with Lellie and Granddad Ba-Ba. For the last 12 or so years, we've frequented the same condo located on Matanzas Inlet. The location is incredible, and the "lay of the land" makes these awesome Tide Pools possible on a daily basis. Now that we have a 2 year-old, these Tide Pools sure do come in handy for entertaining a toddler. Sure, we're probably terrible parents for letting Judd in these pools when reportedly there's been flesh eating bacteria off the coasts of Florida. But I say Back off! Judd is just fine.

My single favorite photo from this summer

3. First Steps

For the last couple years, our son has had one true constant in his life: First Steps Daycare at the First Baptist Church of Ocala. We dropped Judd off at First Steps for the first time when he was just 14 weeks old. They've helped us raise him ever since. When Abs was diagnosed, the great people at First Steps were some of the first to wrap their arms around us and help. I always handled the morning drop off, and almost EVERY day someone at First Steps would ask about Abby and say they were praying for her. They took great care of our family. Life happens and circumstances change, and so this Summer was Judd's "curtain call" at First Steps. We will always be so thankful for First Steps. Thank you to Mrs. Susan, Cheryl, Teresa, Lindsey (x2), Laura, Katie, Heather, Barbara, Audrey, Sharon, and Janice. We are so thankful for you. Below are a couple pictures from Judd's last day. One hugging a friend goodbye, the other as he walked out (which may or may not make me a little "misty").

2. Celebrating Bopz

We lost a great man this summer, and someone who was a crucial part of our team that raises Judd….Jimmie "Bopz" Sparrow. Jimmie married Abby's mom in 2002 and was a significant part of our life over the last 12 years. ESPECIALLY when Judd came along. Judd absolutely adored him. We lost Jimmie in late June. It was a sad time, but also a time for celebrating a great life. Jimmie got all of the "important stuff" right while he was with us. We'll see him again one day. Judd wrote a letter to him which was read at his funeral. Like I said….Judd adored him.

1. August 25, 2014

Yes, the summer ends officially somewhere around September 20th. But lets face it, the summer really ends Labor Day weekend and when football starts.

Abby marches into her Oncology office for her LAST ROUND of Chemo tomorrow, 08/25.

She'll get her meds on the 25th, and if the typical pattern holds true, she'll feel good again on the 1st. Labor Day is September 1st. Thus, Abs will officially be done on the same day that a new season will begin anew, and we'll be able to put this last season…the Summer of 2014….the Summer of 6 Rounds of Chemotherapy…..a truly hard Summer…..Behind us…..I call that Design.

I am so proud of her. I am so amazed by her. I can't tell you how many times someone has approached me this summer and said, "Man, Abby really looks great". Heck yes she does. There's been some down days, but my wife is truly tenacious, and she did not let circumstance dictate how she would live this summer. How did I get so lucky?

I'm also so thankful for Abby's sisters and girlfriends, especially her oldest sister Kristi, whom have really helped Abby get through these treatments. Kristi has been here for every drop of meds. Every 9 hour marathon of Chemo Cold Cap rotation. Every time Abby has needed her….she's been here. She really got Abby through this. I was merely a bystander trying not to do anything stupid.

#1 has no pictures because we will take them all tomorrow. Regardless, this is truly the best day of the Summer. Abby, Kristi, and I are rocking some pink shirts at the oncology office tomorrow. What a day it will be.

If you're still praying for us, add Abby's Heart to your prayer list. She's still having some issues with her heart exams (as a result of her Meds), and therefore she needs to see a Cardiologist. Nothing big, but these heart problems are causing her to have to forgo a few drugs which are CRUCIAL to her treatment. She's taking it in stride though, and I'm certain her Docs will have a plan.

So there you have it….My Top 10 Summer Countdown. I hope you've had just as great of a summer. If not, you've still got a week to make some memories. Talk to you again soon.

-Rossaroni

How I Met My Cancer - Part 2!

Meet The Mellingers! It’s hard to believe it’s been so long, but well over a decade ago we roamed the halls together at Florida’s premier secondary education center, Forest High School.

Kelly: Always cool….heck of a soccer player…..one of those people that everyone could agree on.

Ryan: Man amongst boys growing up…..was pretty much able to buy beer at age 14….good guy…..landed a woman two years his Senior. Yeah baby!

Maguire and Emerson: Appear to be two great kids whom thankfully look more like their mom (Sorry Ryan).

The Mellingers are just one of the many young families we’ve met whom are in this “fight” alongside us. In many ways, they’re living the same year as us….They rang in the New Year thinking 2014 had great things in store….then realized in February that this won’t be just another year. Ryan and Abs have kind of become “pen pals” in a way this year.  They often message each other to compare notes on their experiences.

Our blog is not just about us, and so we invited The Mellingers to share their stories too. To this day, Abby’s “How I Met My Cancer” post is by far our most viewed post. Thus, Ryan’s story about how he found his cancer can really help us guys. What follows below is the story of how Ryan found his cancer. It is at times a graphic account (though this necessary), and certainly the subject matter is quite adult. But, the information can help all of us. Worth it!

We look forward to sharing more of their story along the way.

  

I have been asked by Abby to talk about my experience with cancer so far. I am by no means an author, so forgive any grammar mistakes.

As most of us men can attest to, pride is an attribute that we do not like to give up very easily. If there is something wrong we either dismiss it for a while, or just say, there isn't anything wrong at all.  This is where I was during December of 2013.  I noticed a mass on my testicle, and a bit of a tender pain. I didn't think too much about it, and said that I had a physical scheduled for January of 2014, so why not just wait?! The thought was always in the back of my mind, that this mass could be a call for concern, but again I am a man, and it wasn't that uncomfortable to deal with. The mass was hard and directly on my testicle. There are other masses that can occur within this region, but from what I have read, those aren't a real threat, just the ones that are DIRECTLY on the testicle. Anyhow, if you have something down there, get it checked out immediately! The earlier the dectection…..the better!

This whole cancer journey started on a night in early February of this year. I had just woke up from putting my son Maguire down for the night. We call his bed the “Sleep Trap”. I don't know what it is about that bed, but it puts me out everytime! When I woke up I had the feeling like someone was “squeezing” and wouldn't let go. The pain migrated into to my abdominal region. I tried to see if the pain would subside, but after 15 minutes, and countless google searches of what could be happening, all signs pointed to….

Get your butt to the hospital!

This isn't just from a cancer standpoint, anytime you have pain in this region, you have a limited window before they have to consider removal. You could get the tubes “tangled” and such, which then cuts off blood flow.  I think the window is about two hours.  So with that, Kelly and I called some great friends, Rachel and Kerry, and had them stay at the house while we rushed to the hospital. I can't imagine what they were thinking, after getting a phone call at 10:00 at night, but they knew it was urgent!

When Kelly and I got to the hospital, we were rushed right back to get an ultrasound. This is the real definitive way of finding out what is going on.  Sadly, the ultrasound did show a large mass, 2 cm, on my right testicle.  After the ultrasound, the doctor on duty said it was pretty much 95% cancer. They didn't know what kind, but it had more than likely been there for longer than December of 2013, I just started noticing it at that time.  From what I have been told, testicular cancer is not hereditary, and they still don't know what triggers it. It generally happens between young adult males, 18-35 years of age. What they are trying to link it to is “under development”.  My right testicle has been smaller than its buddy for a few years, and I am sure all of the blunt trauma I have experienced to that area through sports have stunted its growth quite a bit. If I would have known this earlier, I would have gone sooner to get that small guy checked out.

After the blood work, and pretty much a next day orchiectomy, they determined I had non-seminoma testicular cancer. It is the rarer form of the two kinds; non-seminoma and seminoma. The non-seminoma cancers are typically faster acting, and not real susceptive to radiation. I probably should have started this guest appearance a long time ago, because there is a lot to write. I will stop here with the initial diagnosis, and keep adding to Abby's blog in the future.

I have to tip my hat to anyone who goes through this experience, whether it be cancer, chemo or radiation. As everyone always says, attitude is half the battle, and I would be the first to agree! I have had a great support system, at work and home as well as friends. I welcome any questions anyone might have on this subject! I know it mjght be difficult for men to discuss things like this so please feel free to friend me on facebook and start a conversation. More to come. Abby thank you for having me as a guest speaker!!

-Ryan Mellinger

I'm a Mutant

Greetings! Well, round 5 of chemo can be checked off my list of exciting things I got to do this summer.  Yay me! Last Monday didn’t go quite as planned though. I think I’ve mentioned before…. or maybe I haven’t, but I have to get an echocardiogram every 6 weeks during treatment to monitor my heart.  Herceptin, is one of the non-chemo drugs I get to help fight off my HER2+ tumor in my left breast. Well, one of the lovely side effects of this drug is that it can cause damage to the heart and it’s ability to pump blood effectively.  When I showed up on Monday for treatment, I was told that my ejection fracture of my heart had decreased since my last echo and that I was not able to get Herceptin and Perjeta that day. Prior to starting chemotherapy, my EF (which is a test that determines how well your heart pumps with each beat) was 55-60 and in normal range. The next one was 55 and my most recent one that I had just last week was measured at 40-45 and that is below normal. Kinda freaked me out a little because I’ve only had 4 rounds of it and I’m suppose to get infusions of Herceptin for an entire year. Anyway, I will return in 2 weeks to get another echo to see if the little “vacation” from Herceptin brought my EF rate back up…. which is possible. However, it sometimes takes longer. I just don’t want to be behind getting any necessary helpful drugs. So pray that my ER goes back up and I can get Herceptin and Perjeta with my final round of chemo on the 25th! I hear that Herceptin, when taken alone, tends not to have as great of an effect on your heart so I’m praying that will be the case in the year I’ll be getting the drug.

I’m on my third day out from chemo and I feel pretty decent. I’m not sleeping very well because I keep having hot flashes…and heart burn….mixed in with a wandering mind….and the occasional wake up, bad dream cry, from Judd makes for a difficult nights rest. I do have an appetite thanks to the steroids I take to help with nausea. I also still have my red locks…eyelashes and eyebrows.

All and all, not too shabby.

So back to the title of this post….I am a Mutant. Last week, before we left on our relaxing beach get away, I received a call from my genetics counselor at UF/Shands. My results were finally in (and a week sooner than I was told).  The results, however, were not results I wanted to get. Turns out, I do have a mutation in my TP53 gene which my doctors have assumed all along.

I have what’s called Li Fraumeni Syndrome.

So, what the heck does that mean? This is a rare disorder that greatly increases the risk of developing several types of cancer. TP 53 is a tumor suppressor gene that each of us have. This gene is supposed to help control the growth and division of cells. Well, mine is broken, so my body can’t keep up to speed with the rapidly dividing cells, which can then turn into cancer.

Moving forward, there is currently nothing I can do about this syndrome except for getting screenings and scans often to help catch any potential new tumors at an early stage.  There is no miracle drug to fix this problem and nothing even in trails.  The most gut wrenching part of this all, is that Judd, my sweet boy, has a 50% chance of having this mutated gene. Just thinking about it makes tears pile up in my eyes. Most likely, this was an inherited gene from one of my parents. However, it is possible that this was a spontaneous mutation that started with me.  My mom just got tested, and my sisters and Judd will all get tested as well. Each of them have a 50% chance.  Results take about 2 weeks to come in. I have not made Judd’s appointment yet. Honestly, I’m having a hard time thinking about him even having to have his blood drawn. He’s not even 2 and definitely hates setting foot in his doctor’s office. Now we have to get his blood drawn to fill a whole tube?!

I’ll go ahead and apologize to the technicians.……It’s going to be a traumatizing for all those involved.

PRAYER WORRIERS……WE NEED YOU!!! Please pray no one else in my family has this awful thing that’s trying to take over my life.

Since finding out I was part of this rare group, I have already met (on facebook) a group of people also dealing with this syndrome.  It really is comforting having people I can ask questions to that have been dealing with this longer than I have. It’s also helpful (but sad) seeing other 29 year old ladies who were diagnosed around the same time I was and whom have the same questions I have. It’s an awesome support group and they affectionately call one another….Mutants.

I have already reached out to get information to become part of research studies at M.D. Anderson and at the National Cancer Institute. If there is anything I can do to help raise awareness and or help find out more information to help cure this syndrome…. I am all for it!

I know this isn’t the uplifting blog post you like to read, but I appreciate the vent session. I still know that I have SOOOO much to be grateful for that sometimes I feel bad for feeling like I wish this C word wasn’t part of my life. But it is, and likely always will be. I’m just learning to live with it and be thankful for the MANY blessings that have come my way! I have the opportunity to really cherish each day, and that in itself, is a gift.

Gift

-Abby Jones, Mutant