THE RED DEVIL

THE RED DEVIL

I hate cliches and except in movies, I have never heard any Fire Fighter use the the term. Well in Chemo it has some lovely side effects. When the nurse mentioned it I had to laugh inside as I sat there wearing a FD t-shirt...(ask FF Girl, I only wear FD shirts). I have heard Jobs, Workers, 10-75s and a few other names for fires, but what the hell is this Red Devil? The name of the drug is Adriamycin that is bright red in color and is delivered into the port in my chest by this horse size syringe that has to be administered slowly as not to cause heart damage. As she was prepping this, she covered me with a large pad. Inquiring minds want to know, so I asked why? Her response "If this gets on your skin it will burn". Wait...what? You are putting this into the main line to my heart and it is ok? I have been in a few fires that scared the crap out of me but this blew my mind. Well the side effects (which the first nurse failed to mention) include your urine turning bright red. Wellllll..this is one guy that sees bright red urine and gets worried. Thank God we had the notes on the meds I get and we read the side effects. Hopefully this gives you some insight into the RED DEVIL. As always..Never Give up, Never Give In  and Never Forget.....Da Chappy

Food Fight

I come from a "foodie family".  Food is love - Mom always had a good breakfast ready for us kids before school, and a warm dinner for the family in the evening.


Tommy's family on his mom's side is Italian -- if they are feeding you, they are loving you.

For those that don't have these backgrounds or a passion for cooking and creating it is hard to understand that feeling of satisfaction and completion when you present your loved ones with a good nourishing meal, and how a part of your heart goes into it.

One of the side effects of the chemotherapy is altering the way food tastes.  For a former chef like Tommy, that could be likened to maiming the hand of a master pianist.  The loss is terrible.  Some lose the ability to taste at all, others the taste is metallic, or things just don't "taste right".  It's an itch you just can't scratch when craving comfort foods and favorites.

Tommy's sense of taste has started to become altered. Metal utensils leave a metallic taste in his mouth, so we've now switched to all plastic ware. (Bonus.... fewer dishes to wash!)  The down side... I had to endure a series of  "does this taste like it's gone bad/stale" episodes.  That was a lose/lose situation there, and I have now adopted a "when in doubt, throw it out" stance. 

However, this brings the problem of getting enough nutrition in him.  Along with the not feeling good, and nausea, the food just doesn't taste right.  So there is a disappointment in the expectations and cravings that just can't be met right now.  Additionally, there are the mouth sores to deal with.  The chemo doesn't just attack the bad cancer cells; it also goes after the good cells too, and usually the lining of the mouth, esophagus and stomach take the first rounds of hits. 

Now I am NOT a nutritionist,  and won't even start with the claim that if you eat the right foods, in the right orders with the stars aligned the right way you will cure your cancer without treatment.  In my opinion, that's just foolish, dangerous and deadly. And don't even get me started on the dangerous- to- manufacture hemp oil magic elixir without some concrete, scientifically proven results.

 HOWEVER, the body needs more nutrition and more proteins to fight off the cancer, and heal against the unwanted effects of the chemo.  My goal is to be able to help him maintain a certain amount of nutrients, minimize the weight loss, and keep him feeling as strong as he can during treatment.  Food is fuel, and this fight takes a lot of fueling.

Speaking of fights.. our days usually go like this.

Me: "Have you eaten"
Him:  "No"  or "I'm not hungry"
Me:  "I didn't ask if you were hungry, you're going to eat anyway".

At which point he either gives in, or I give up for a few hours and we repeat the process. Smoothies, as long as they aren't too acidic, have been a great way to get good nutrition and calories in him when he has no appetite.  I also found a protein powder at a health food store  I can sneak into the  smoothie without him noticing.  (Shh, honey don't read that part). 

The problem remains that what tastes good to the unaltered palate,  might not work for the one affected by the chemo. Since flavors have been dulled to him, he usually piles on jalapenos and hot sauce. (We now buy each by the vat.)

There has been a good book I've found recipes that sound (and what we have tried are) tasty, and are broken down in a way you can tell if it is good for a nauseated day, or a sore mouth day, if they need more or less fiber, things that are high protein, and nutrient dense.  The book  The Cancer Fighting Kitchen has been a go-to for me for ideas, even if I don't have all the ingredients on hand, I can still switch things around enough that it tastes good to all of us.
 
I was told even if he didn't feel like eating - one or two bites of something - anything- every few hours is a good thing right now.  It can be applesauce, pudding, a part of a sandwich, what ever he will just take 2 bites out of.  And that is enough for now. 


~~FF's girl 

Here we go.... again

Remission - the word you really want to hear.   But there always seems to be the elephant in the room during remission - constantly on the look out for any signs or symptoms that it could be coming back.  Which is what happened.  After 2 years of remission - Tommy started showing some symptoms.   Night sweats, bleeding easily, and getting fatigued really easily.  That was the trifecta - time to get checked out. 

After endless appointments and tests, CT Scans, Pet Scans, blown out veins from blood draws,  hospital stay, a lymph node removal for biopsy --  we finally got the verdict.    Stage 4, grade 3 lymphoma... it was back.. and at the same point it was last time around.  After 2 years in remission, it was back full force.  I had thought we had caught it early -- I had thought we were being so vigilant...  Then there came all the words... chemo, hair loss, transplant doctors....  that's the point I got stuck.. more on that in a minute.

So we start another round of chemotherapy. That's not being said flippantly.   This is a more aggressive treatment this time around.  Thankfully, one of the chemo drugs used last time as part of a trial, is now FDA approved, and that is one of 4 that is in this go around. Plus the god-forsaken Nuelasta shot. 

More aggressive is going to mean more side effects. Having already been surprised by one -- would be nice if the doctors or nurses tell you things like "Your pee is going to be blood red for a day... don't panic."    He's already completed the first round of chemo, and it was broken into 2 visits -- this is done to reduce the possible reactions.  From here on out it will be one visit every 3 weeks, plus a return trip the next day for the Nuelasta shot.   For at least the next 6 months.

After that we need to discuss the options for the stem cell transplant.  On one hand, amazing what they can do for treatment now a days.  He will effectively take on the immune system of the donor.  We're hoping his brother is a match, but there is a 1 in 4 chance he will be.  If he doesn't match, then we go to the donor bank.   This is, the doctor said, the best shot at a cure.  We can get him back into remission without this, but this is a CURE.  However, it doesn't come with out some pretty serious risks.    There's many prayers to be made between now and then, and please, send prayers to us for guidance on the right path!

There was some good news!   He had to have a heart scan done to make sure his heart could handle one of the drugs.  There was a nearly 50% improvement in his heart function from the last time!  Guess there might be something to that eating healthy and being active stuff the doctors preach after all!  Hoping him starting from a healthier place this time around will help in the long run. 

More to come.  Next appointments are in the beginning of August.   We should start seeing hair loss sometime next week.  (I'm vainly hoping it will spare the legendary mustache!)  Don't matter in the long run... as long as I get to give him kisses, mustache or not, it'll be OK.


~~  FF'sGirl ~~

You Never Forget

We all wish we had not seen some of the thing we did; whether you were on a Paid or Volly Department .   I also had the "pleasure" of seeing an infusion room more than I wanted.  Two years cancer free and today, while accompanying a family member to a doctor's appointment, I saw my first infusion room since that time. 

Wow.

Same recliners, same looking I.V. poles.  I was OK for a bit, then they started to hang the I.V. bags and that was it.  All the memories of being in that room  flooded back.  I saw what I saw so many times before; folks getting hooked up.  Then I realized what was different.. what was bothering me.?

I wasn't in there.

I wasn't talking to the other patients.  I was not giving words of encouragement.  I failed as a FF/EMT/Chappy.  I let those people down.  I should have gone and talked to them.  Reassured them that you can win against whatever disease you are fighting. 

When I got home, I needed to think this out and ask myself a few questions.

Out to the "Man Cave" -- surrounded by fire trucks, tools, books, and patches. (I love to look at them since they belong to some friends and past departments I was in).

I was in my comfort zone.  I looked around and my eyes focused on the "Flag of Honor" - right to the name I've looked at so many times before.  Paul A Tegtmeier.  Fellow FF, mentor and friend to both myself and my mother.  Then I thought ..... thought hard.

What would Paul have told me?  Sitting outside in the country, listening ot the birds, looking at nature... my garden & flowers.  It's all very comforting and the perfect place to just sit and think.

"Do what you do best.  Be there for people.  You have seen the victims at MVAs, the cardios and the infusion rooms.  Get in there and do your job."

One other thing I keep in my cave is a set of rosary beads that belonged to my Pops.  I prayed the Rosary and asked the Lord for forgiveness for not doing my job.  I sat for awhile and then I felt it.  Rain on my face.  Rain, the giver of life that washes away everything so it is clean and fresh.

Lord, thank you for opening my eyes to what I need to do.  First I need to reconnect with those that I talked to in the past.   I have most of your phone numbers- but lost a few when my cell phone crashed, but please email me (tomharkins63@yahoo.com) with your number.

Second, I need to follow my own advice.  "Never give up, never given in and never forget!!"

For my friends, FD, PD, EMS and LEOs- my the Lord hold you close and protect you.  Please remember those that are hurting both mentally and physically and grant them serenity and peace.

Best Regards -
   Chappy Tex (Tommy)

Opening Prayer for Texas Firewalkers 9/11 Memorial Stairclimb

September 8, 2013

Welcome everyone -- so wonderful to have such a great turn out for the Texas FireWalkers memorial stair climb. For those that do not know me, My name is Tom Harkins, I was a Volly in NY and here in  Texas. I have now dedicated my life to the Chaplaincy with the Texas Firewalkers,I am here for you. And a big thank you to Pee Wee for giving me this opportunity.

We gather today to honor those gave their lives so that others may live on September 11, 2001, and this year we also carry ,February 18, 2013 in Bryan, Tx,  April 17, 2013 in West, TX, May 31 in Houston, and June 30th in Yarnell AZ in our hearts.

In Romans 5:3, it reads:  

    rejoice in sufferings, knowing that suffering produces endurance, and endurance, character, and character, hope. And hope does not disappoint, because the love of God  has been poured out in our hearts through the Holy Spirit who was given to us.

   

I believe this passage sums up today to a Tee. Let us today rejoice in our sufferings.  Let us carry in our hearts the courage, and character of those we honor, and in doing so, let us feel the hope of the future.   

This is not a race , but a time of reflection on those lost.  A time to honor bravery and sacrifice.  A time to lift up and carry and hold close the friends and families of those that have given their all.  A time to share a message of endurance, and character and most importantly hope for the loved ones of the fallen.

Capt.Patrick Brown FDNY 3 Truck once  said "When the public needs help they call us, when we need help all we have is each other".  And while the path of grief is a personal one, we are proof here today the Brotherhood is still alive. That no matter how near or far, we are but one family, and we all do grieve the losses of our brothers and sisters.  

We thank the Lord for giving us these amazing men and women, and ask for continued blessings for their families, so they know they are not walking through this grief alone.I leave you wit the prayer of Fr Mychal Judge “  Lord take me where you want me to go, let me meet who you want me to meet, tell me what you want me to say, and keep me out of your way”

Let us pray:

Heavenly Father, thank you for allowing us to all be here today to give tribute to those we have lost on September 11, 2001 in New York, and all the other LODD’S across our great country.   

We ask that you bless the bodies of those about to climb and be with them every step of the physical, mental and emotional journey on which they are about to embark.

We ask that you continue to surround the families and friends of those that have entered your eternal kingdom with your unwavering love and comfort, and let their hearts be lighter for the shared sorrow we endure.

Please stay with and help lead the way for those that are fighting disease and cancer, and bless their families with the support, courage and love that will guide them through the fight. I know, Lord, that when the hours seem the darkest, your light shines the brightest, and we pray they will find strength in your light.

And I ask that you stay with all of us today, as we go forth from here. Bless us Oh Lord, and let us carry your love and strength through today, and into all of our tomorrows.

In Jesus name we pray,

Amen

© 2013 FirefighterBattlesCancer.blogspot.com, Tom Harkins, Gina Arnold

No part of this publication in part or in whole may be used without the express written permission of the authors/owners.

Missing you my neglected friends!

It has been WAY too long since we've posted an update here -- and I can't apologize enough! Tommy is in his 2nd year of remission and we continue to pray the cancer is gone for good. We're both back at work full time (and then some) now. 

Tommy has also continued his studies and is working on becoming a (non-denominational) Chaplain. I'm so very proud of him and his work to give back all the support and love he received during his cancer treatments. He has found this is a good platform, not only to spread the good word, but also to share experiences, and help the Brothers cope in especially difficult times.

 We're making plans for another milestone... His 50th birthday. Where better for the Chappie than Sin City? Wish us luck!

 Sept 8, Tommy will be leading the prayer for the Central Texas 9/11 Memorial Stair climb in Austin. The Memorial will also be honoring those lost in the West, TX explosion earlier this year. Our hearts and prayers continue to go out to the family and friends of those lost, as well as the community of West as a whole. More information on the Texas FireWalker's Page .  Tommy's son will be participating in the stair climb this year as well.   We encourage you all to come out and show your support.

Our hearts were broken at the news of the 19 firefighter deaths in Prescott, AZ at the Yarnell Fire.  An unbelievable tragedy, and send our deepest sympathies to the families, friends and communities of those lost.

As of this writing, there have already been 63 LODD's  this year in the fire service across the United States. It has been a terribly tragic year for the fire service.  Hoping the rest of the year is safer, and we don't see any more increase in that number.

Hold your loved ones close.

Video- Firefighter Cancer Support Network 2013