The Days After Surgery

What an awful and emotional time. Tom recovering from surgery, me trying to find alternative treatment options, and at the same time, trying to figure out how to replace the income I lost the week Tom was diagnosed. My larget client at the time canceled his retainer account due to financial issues.

Treatments

My immediate plan:

  • Have Tom see Laurence at Healing Waters
  • Call Treatment Center in Oregon to schedule a call to discuss a treatment plan
  • Call about the Hoxsey treatment I had found in my research
  • Look at holistic cancer treatment clinics in Mexico and Germany
  • Figure out how to handle the emotions (for both of us) of setting up a Go Fund Me page
  • Ask my dad for money, my family
  • Cut every expense I can cut immediately
  • I had to beg one company to let me out of an advertising contract-I wasn’t too proud to do it, I had to cut every bit I could

I talked to a treatment center in Florida-approximately $36,000. The center in Oregon? Initial phone/skype consultation would be $650.00.

There would be many times throughout this journey where I would feel overwhelmed and ask myself if I was giving Tom accurate and good advice, were we making good decisions? I didn’t have anyone to guide me. We couldn’t afford to spend $36,000 and up plus travel expenses for the clinics I found.

The decision to go with the treatment center in Oregon was made. $650 for the initial consult and then the Dr. would send a treatment protocol. The supplements cost around $650 a month and the alkaline-based 100% organic diet would average $300 a week, at times more. There were the tests that were not covered, the bills that needed to be paid and I now had lost a major source of income. Every month we were bleeding into debt.

A dear friend set up the Go Fund Me Campaign and planned an event for people I knew to get together with me and donate. As thankful as I was for this kindness, it was tough to basically ask people for help. I am so grateful to the ladies that attended the event. They genuinely cared about us, wanted to help us, and did help us. I can never share with them my appreciation. A lesson in being humble and letting people help you.

A local charity that helps families pay their bills and other needed things as a loved one goes through cancer called me one day. They offered to help and they are amazing. We are so grateful to them. You see, I pretty much stopped working and focused on doing research, taking care of Tom, sourcing the food and supplements, scheduling treatments, tracking all the medical records, and running things. We felt the love and prayers from so many people. There were a few people who didn’t agree with Tom’s treatment choices and some judged us on creating a Go Fund Me page.

The lesson I learned was not to judge because you never know what someone’s situation is and I had to do whatever it took to help my husband get rid of this life-threatening disease.

This was just the beginning of the treatment and healing process. Tom began drinking Essiac Tea every night. Then the supplements arrived and initially, he took over 30 capsules a day plus more. I made lists of what he took and when. I doled out capsules-those that would go in the morning smoothie, and in two tiny bowls, I would place the morning and afternoon capsules that Tom would “graze” on, and finally, the evening capsules.

Tom’s body went through a detox and he didn’t feel well for a few days. Then he began to lose weight rapidly. Just the beginning…

The Day the World Stopped Turning…

Tom’s birthday in Paris, February 2018

July 31, 2018 – We get the news…Tom has Bladder Cancer.

The Dr. who had a dull bedside manner at best, called while we were making dinner. I could see it on Tom’s face, I knew it was cancer. Bladder Cancer stage T1 high level. It had spread from the bladder lining to the thin tissue between the lining and the muscle-the exact place the cancer spreads to first is the muscle. The Dr. started on the phone talking about BCG treatment, chemo, radiation, and possibly removing the bladder. Unbelievable thing to do to someone whom you just told they have cancer.

We cried so hard and held each other so tight. This couldn’t be happening, it didn’t feel real. But it was real and we were not fighting for Tom’s life.

I made a note in my journal, “Have to share info with Tom to get him to understand other treatment options…but not everything like, how bad the survival rate could be with this cancer. I hate the word cancer.

We head to the Dr.’s office to have the catheter removed but the Dr. isn’t there so we have to wait. There was a flood of emotions from fear, anger, sadness, and just being overwhelmed while we waited for the next appointment and we researched like crazy the treatment options.

As I read my journal entries, there are moments of fear, sadness, being overwhelmed, and hope. Days of crying and days of doing a ton of research to find what we needed. After 5 Urologists, none of whom liked us very much, we are not deterred from our quest to push cancer back with the treatment protocol Tom has decided to use.

Lyrics to Build a Better Boat by Kenny Chesney

Diane Leone
Build A Better Boat

I thought you might be interested in the lyrics that means so much to Tom and to me during this time. Build A Better Boat by Kenny Chesney:

I ain’t lonely, but I spend a lot of time alone
More than I’d like to, but I’m okay with stayin’ home
My how the last few months have changed
I’m smilin’ more despite the pain


I breathe in, I breathe out
Got friends to call who let me talk about
What ain’t workin’, what’s still hurtin’
All the things I feel like cussin’ out
Now and then I let it go, I ride the waves I can’t control
I’m learnin’ how to build a better boat


I hate waitin’, ain’t no patience in these hands
I’m not complainin’, sometimes it’s hard to change a man
I think I’m stronger than I was
I let God do what he does


I breathe in, I breathe out
Got friends to call who let me talk about
What ain’t workin’, what’s still hurtin’
All the things I feel like cussin’ out
Now and then I let it go, I ride the waves I can’t control
I’m learnin’ how to build a better boat

I ain’t lonely, but I spend a lot of time alone
More than I’d like to, but I’m okay with staying home
My how the last few months have changed
I smile of mourn despite the pain

I breathe in, I breathe out
Got friends to call who let me talk about
What ain’t working, what’s still hurtin’
All the things I feel like cussing out
Now and then I let it go
I ride the waves I can’t control
I’m learning how to build a better boat

I hate waiting, ain’t no patience in these hands
I’m not complaining, sometimes it’s hard to change a man
I think I’m stronger than I was, I let God do what he does
I breathe in, I breathe out
Got friends to call who let me talk about
What ain’t working, what’s still hurtin’
All the things I feel like cussing out
Now and then I let it go
Around the waves I can’t control
I’m learning how to build a better boat

I breathe in, I breathe out
Got friends to call who let me talk about
What ain’t working, what’s still hurtin’
All the things I feel like cussing out
Now and then I let it go
Around the waves I can’t control
If it’s working I don’t know
When I get done the thing may not flow
But I’m learning how to build a better boat

Why “Build A Better Boat?”

This song touches my soul. You see, my husband Tom was diagnosed with bladder cancer in July of this year. As often is the case, a song from Kenny Chesney really moves us. This song, Better Boat, is Tom’s “anthem”.

He gets emotional when he hears it because it reflects this journey we are on. Diagnosed in July, tumors removed, Tom has chosen an integrated but mostly holistic/natural treatment protocol.

So, it often feels like we are on our own and alone doing this. Cancer causes you to fear, anger, and with this treatment, it is really building his bodies immune system to fight this disease. The cost of surgery, doctors, tests and strong nutrients, specific food-all organic, oxygen hyperbaric chamber treatments, Far-Infrared Sauna treatments, and Cryo-Nitrogen treatments are very expensive.

The week Tom was diagnosed, I lost my monthly client so it’s been tough.

So far, tests show we have pushed cancer back but it’s still at the cellular level so we continue this treatment protocol for at least another year. It takes so much money to do that.

Diane Leone
Building A Better Boat

This song reflects how Tom feels and we both have faith in what he is doing. I do the research, make the appointments, handle the insurance and paperwork, find the food, store & prepare it and keep nutrients stocked.

I worry because we can’t pay for this for a year. It’s about $2500 a month on average if we don’t run into obstacles and need other things. And that doesn’t include whatever tests he may need throughout the year.

My friend started a gofundme page and friends, family, and associates were kind enough to donate but we really need help.

Because a holistic treatment for cancer seems so controversial, and this song has touched our hearts in such a big way, I’ve created this blog page www.buildabetterboat.life to blog and vlog about the journey.

We understand that many believe in complete western treatments but we know others support us and believe in natural as well. So far, we’ve tried to blend it but Doctors are not willing to work with us. I cry when I hear this song because it reminds me of Tom’s journey just like Summertime reminds me of my last summer with my mom, who we lost to cancer.

I pray that people will find this blog and know we sincerely need help. If I could find 250 people that would give $100 on the gofundme page, I could breathe that we can get through this year.

All of Kenny’s music is amazing, this song is very special to us and we love the No Shoes Nation Community. Sorry to say we won’t be able to see Kenny in concert even though it’s the first time in several years he has played in Jacksonville, FL (close to us) but we can’t spend any money on anything extra. So, we hope when we get through this we can see Kenny again.

Thanks, Kenny for this song. Thanks to those reading this. #CancerFreeTom – if you wish to read our story and maybe make a donation, here is the gofundme link: https://www.gofundme.com/help-tom-leone-beat-cancer&rcid=r01-154618935924-c9690a61635446e0&pc=ot_co_campmgmt_w if You just wish to follow our journey, my updates please subscribe here to get notices or simply come back to this page.