My Renewed Hope

My Renewed Hope Blog

Dennis Fry’s Interview

Interview by Mégane Luquiens

For a different perspective on their stories, Dennis and Kathy were both interviewed by Megane Luquiens, a college student from Switzerland who is also their exchange daughter who lived with them during the 2015-16 school year.

Can you tell me, in a few words, who you are?

I am Dennis Fry, Kathy’s husband.  We’ve been married for 39 years and have been together for 46, since meeting and first dating in high school.  We have two grown kids of our own and three grandchildren, as well as a large family of exchange students all around the world.

What was your experience with Kathy’s cancer journey? What was your part as husband and family caretaker ?

Wow…it was a whole range of thoughts and emotions: shock, fear, confusion, hope, and more than I can put words to.  There were some hard times and some very good times.  We talked through all of it and went to all of the doctors appointments, tests, and treatments together.  The only real thing I could do was to be there to support Kathy and keep the day to day of our household working.  I tried to keep things as positive as I could and keep Kathy focused on a good outcome.  By sticking close together and managing outside stress we have been able to do just that.

Going to Puerto Rico must have been good for you too. Did that trip also help you? In what way?

Our trip to Puerto Rico in January 2007 had two parts to it.  It was to give us a chance to celebrate our 25th anniversary which we had missed during treatments, and also to have the opportunity to just get away from all that had been happening for the previous year.  I had been very worried about Kathy’s state of mind and seemingly depression.  That trip was an amazing turnaround. It took us out of cold Wisconsin in the dead of winter to a tropical island where everything was new and different.  It gave us the chance to reconnect and share all of those new things.  I got my life partner back again!  We would just start each day with the only goal being to explore a new beach with no expectations or schedule.  We took lots of pictures, and after the trip even did a little day by day log of what we did and saw.  I could see a huge change in Kathy’s mood and outlook as the week went on.  It also lifted a great weight from my shoulders as we were back to taking on the world as a team again.

What does this project represent to you?

After most people experience a life changing event such as cancer, what they want to do is get back to normal.  Many people do this and are happy if they can find normal again.  We went back to our ‘normal’ routine for a very short time, and then realized we wanted to return to Puerto Rico – we had found a ‘new normal’.  We started looking for property there so that we could return often.  About six months after returning from that first trip, we found a place in the mountains in the southwest corner of the main island of Puerto Rico that is just a short drive to the beautiful beaches of that corner of the island.  We started building our own house (cabin).  We were talking with a friend about all of this a short time after the cabin was finished.  When discussing all of our experiences there, we came up with the description of that first trip as a “Restorative Escape”.  That set us on a whole new path – taking our life changing cancer event and working to make this kind of escape available to other cancer survivors.  Renewed Hope / Esperanza Renovada was created to do just that.  So now for us there is no going back!w We ‘re going forward with making these escapes a reality for more survivors.  This gives us the chance to again work together on a common goal and fill our lives with the work of helping others find renewed hope in their lives, after their experiences with cancer diagnosis and treatment.

Thank you for your time!

Kathy Fry’s Interview

Interview by Mégane Luquiens

For a different perspective on their stories, Dennis and Kathy were both interviewed by Megane Luquiens, a college student from Switzerland who is also their exchange daughter who lived with them during the 2015-16 school year.

Can you tell me, in a few words, who you are?

I’m Kathy Fry, a follicular non Hodgkins lymphoma survivor and founder of Renewed Hope/Esperanze Renovada, a non-profit that provides ‘restorative escapes’ to cancer survivors and their families, to help bring hope back into their lives after cancer diagnosis and treatment.

When were you diagnosed with cancer? What happened that year?

After two years of knowing something wasn’t right and trying to get answers, I was diagnosed in January of 2006 with follicular Non Hodgkin lymphoma (fNHL).  That year was a roller coaster of emotions.  Diagnosis was at the end of January, I had a battery of tests and appointments over the next few months, and finally began treatment with a drug called Rituxan in June.  The period between completing treatment and the first scan to see what the results were was a very anxious time.  Dennis and I missed celebrating our 25th wedding anniversary in June due to my treatment schedule.  After I got the good news that the Rituxan had done its job, we decided to plan a trip to a warm place in the winter to celebrate the missed anniversary.  Since I didn’t have a passport, we looked for somewhere within the US or its territories, and settled on the small island of Vieques, which is part of Puerto Rico.  That is where we experienced our “restorative escape”, a trip away from everything routine that helped me come back to life after being in a pretty dark place for the previous months.

What made you decide to go take a trip? And why did you decide to go to Puerto Rico?

After completing my first round of treatment, I had a lot of uncertainty about what would happen. It was a pretty dark period of time, and it was becoming quite clear that I needed a change of scenery to give me a chance to forget about cancer for a while. As I said, we had missed celebrating our 25th wedding anniversary, so we wanted to do something to spend time together.  When thinking about where to go, I had to consider the fact that I didn’t have a current passport. I happened to see an article online about places that were easy to travel to.  The last place listed in the article was a little island called Vieques.  Since Vieques is part of Puerto Rico, a U.S. territory, we didn’t need passports.  American currency is used there, and many people speak English so getting around wouldn’t be difficult.  And because we were planning this trip in January, it didn’t hurt at all that Vieques is a tropical island! 

How did that trip help you to recover?

Getting away to a place where we’d never been, doing something we had never done by traveling to a warm place during the winter months, and the fact that every day on Vieques was a new adventure all did wonders for my mental health.  It was a whole week away from thinking about tests, appointments, treatments, and cancer itself.  That trip literally brought me back to life after that long period of darkness.

How did you get the idea to provide this type of retreat to other cancer patients?

The idea to give others the same opportunity to get away from everything having to do with cancer didn’t come immediately.  But both Dennis and I saw what that week was able to do for my state of mind, and eventually we realized that we would like to provide that opportunity for others who were dealing with the emotional aspects of cancer diagnosis and treatment.

How do you feel about this whole project coming alive?

We have been slowly working on this project for a little over five years.  With both of us still working full time, we haven’t had as much time to devote to getting things going as we would like.  But now we are getting closer to retirement and we plan to use that time to provide these opportunities for others, as our ‘semi-retirement plan’.   It feels great to finally be making this dream a reality!

Thank you for your time!

It’s Been A While

It’s been over a month since I posted an entry to this blog. It’s the busiest time of the year at my workplace, we welcomed a new exchange student, and I had a milestone birthday (Do I feel 60? Some days yes, some days no…). And to be honest…reliving this story isn’t as easy as I thought it would be. Cathartic, yes. But I wasn’t prepared for the emotions that would come back up to the surface with the telling.

I’ll come back to the story in an upcoming post, but for now I’m going to jump ahead to what we are doing today.

Dennis spent nearly three weeks working on our new property in Puerto Rico in July. He ran 1000 feet of water line from the spring at the top of the mountain to the 3000 gallon concrete cistern. (We will not be dependent upon the water company, AAA, for life sustaining water supply.) More line needs to be run from there to the building sites for the new cabins and the remains of the structure where the family of the previous owners of this land processed the harvest of local coffee farmers.

The building has been unoccupied, and the 21 cuerdas (one cuerda is roughly equivalent to an acre) it is situated on have not been worked in more than 20 years, since Hurricane George hit the island in 1998. George tore most of the roughly 30 x 80 foot processing building apart, leaving only the concrete floor and a few short walls. The family did not rebuild. There are lots of plants on this land, including mango, orange, coconut, and breadfruit trees and several varieties of bananas. A huge palm tree stands at the southeast corner of the ruins of the building. I believe this would now qualify as an organic farm if crops off the land were harvested again.

This place will become our home at some point in the near future. The plan for semi-retirement is to run a vacation cabin business here, with some of the proceeds from the rental of cabins going toward providing “restorative escape” stays for cancer survivors and their families, free of charge. We currently provide these stays at the first cabin we built in 2010, about 10 miles farther up in the mountains. By next year, we hope to have a small place on the new property that will be available for vacationers and for our program. We’ll add a few more cabins as time goes on. We plan to honor the family who owned the farm for many years, some of whom still live in the area, with photos of the working farm in the cabins and in the main lodge building.

The Waiting

“The waiting is the hardest part”.  ~~Tom Petty

How true that is.

Summer of 2006.  I finish my first round of Rituxan treatments at the end of June.  Our 25th wedding anniversary comes and goes, but everything is so unsettled and uncertain that we don’t really do anything to celebrate.  I quit a job I never really liked.  Start a new one on the 10th of July.  The summer seems to move on without me.  I know things are happening around me.  I go through the motions, shuffling through the daily and weekly routines.  Get up.  Go to work.  Come home.  Make dinner.  Go to bed.  Start over.

Wait.

August.  Pack up the youngest and move her off to college, nearly four hours drive away.  Come back home to the second empty room downstairs.  Lose our big beautiful marshmallow of a yellow lab, my beloved dog with the soul of a human, Oscar.  Go to the grocery store.  Mow the lawn.  Pick the green beans.  Wash the clothes.  Mop the floor.  Vacuum the carpets.

Wait.

At the time I didn’t know it, but I was spiraling downward into a very dark place.  They don’t tell you about the time “after”.  They don’t tell you that you may feel empty.  Purposeless.  Devoid of hope.  They treat the body.  Get rid of the symptoms.  Eliminate the invader.  You fight the fight during treatment.  And then…you wait.  You wait for the next lump to appear.  You wait for the next blood tests.  The next scan.  The next appointment.  You go through it and you wait some more.  They don’t tell you how this can all affect you mentally, how it can rob you of the joys in everyday life.  They don’t tell you that even if the body responds well to treatment, the sun may seem dimmer, the grass less green, the sky a paler blue.  The light may go out of your world.

Wait.

There was a scan at some point in the early autumn.  This was what I had been waiting for.  Proof that treatment had worked, that my body had responded to the Rituxan and had kicked the invader to the curb.  Great news.  I had gotten great results from that drug made of mouse antibodies that targeted only the “bad” cells and didn’t wipe out the immune system.  A miracle drug.  I am forever grateful to mice.  “All clear!”  “No evidence of disease!” (Or NED as we cancer survivors have nicknamed our hoped-for result.)  “Celebrate!”

But somehow…I didn’t feel much like celebrating.  I had been told at the beginning that this was an “incurable” blood cancer.  I tried not to dwell on that word.  But I still wondered…how long until it comes back?  Will I ever see my grandchildren?  Will I see my kids get married?

The uncertainty can drive you to a dark place.

If you’re still with me after all of this gloom, I want to reassure you that things DO get better.  Sometimes you have to walk through that valley of the shadow in order to appreciate the sunlight again.  But, “they” don’t tell you that it may take a while.

Wait.

Autumn.  Colder mornings.  Nature getting ready to sleep through the long Wisconsin winter.   The leaves change color, then fall from the trees, leaving grey and brown and cold everywhere.  The dread of the coming winter nearly pushes me over the edge.  I’m not a fan.  Summer is my favorite season, and I feel as if I’ve missed it completely and I’m headed into a deep, dark, cold, bottomless void.

Remember that 25th anniversary?  It’s a milestone that deserves to be celebrated, but we were in the heat of the battle, and when that milestone tapped us on the shoulder, we shooed it away as if it were a pesky mosquito buzzing around our ears.    Now, with treatment over, results in hand, and winter approaching, we decide we should try to find a way to celebrate.  We need to find the summer we had missed.  An article on a website catches my eye one evening.  One of those travel articles talking about “Ten Easy Warm Weather Destinations for Long Winter Weekends” or something to that effect.  The last place on the list is a little island off the eastern coast of Puerto Rico that I had never heard of.  A place where there is no chain-anything.  A place that can only be reached via a puddle jumper flight over the only tropical rain forest in the U.S. National Forest system, or by a two dollar, 45 minute ferry ride.  A place a U.S. citizen can visit without a passport, but feels like a completely different planet in January when you’re a midwesterner born and raised.

Vieques.

Very slowly, the waiting changes to anticipation.  Imagining going somewhere warm in the middle of the winter and planning this trip to a magical destination slowly starts to reverse the spiral.

Now the dreaded waiting becomes anticipation.  And I feel the first warm ray of hope filter through the grayness.

Chapter One

I hardly ever went to the doctor.

In my 46 years I had been in the hospital exactly four times.  First when I was born.  Next at age 24 when I had an emergency appendectomy.  The next year on the same weekend when our son was born.  And four years after that when our daughter was born.  A total of less than a week’s worth of days in a hospital in 46 years.  I rarely caught a cold, went for years between bouts of stomach flu.  No health problems to speak of.

So being thrown head first into doctor appointments, tests, CAT scans, PET scans, pokes and prods, consultations, more pokes and prods, and especially the lovely bone marrow biopsy (on Valentine’s Day – how romantic!) was a shock to the system.  Those first months of 2006 were a blur.  Get the diagnosis – follicular non Hodgkins lymphoma, stage III to IV (more about staging in an upcoming post), a slow growing, non aggressive version that is highly treatable but supposedly incurable.  Research lymphoma on the Internet (not a good idea, but for an information hound such as myself it’s just what you do).  Stress about survival rates, insurance, medical bills (I don’t want my family to go bankrupt over this).  Meet the oncologist.  Self refer for a second opinion.  A bout of cellulitis after the biopsy (the pain is unbelievable).  Trip to Mayo Clinic in Rochester MN, an amazing experience even under the circumstances.

Dr. White, the oncologist at Mayo, was amazing.  After I went through a few tests there, he sat in his office with me, looking over the records I had brought, and talking about options for nearly two hours.

I had done enough research to know that I wanted to avoid the “big guns” of chemo if at all possible.  Dr. White told me about a clinical trial of a drug called Rituxan, a “monoclonal antibody” which attacked only the “bad” cells and didn’t wipe out the entire immune system the way chemo treatments can.  It was a phase II trial, which meant that the drug had been tested and was effective (not a placebo vs. real drug trial).  This trial compared the outcome of using the drug as a “maintenance” measure against using it only upon recurrence of disease.   And as it turned out, the doctor who designed the study was a colleague of my oncologist at the University of Wisconsin.  I left Mayo with an action plan.  I wanted to use Rituxan as a first line treatment, and I would tell my onc that I wanted him to try to get me into the study.

Long story short, I got into the trial, in the “retreatment upon recurrence” arm.  This meant I would have a first round of treatments, have a CAT scan three months later to gauge the effects, be scanned every six months to watch for any recurrence (parameters of the study gauged recurrence very strictly).

The first treatments were once a week for four weeks, infusions of Rituxan, in June of 2006.  For me the treatment phase was physically very easy.  Benadryl naps and the sleepiness that lasted a few hours after treatment were the worst of the side effects.  Like almost nothing at all.  I didn’t miss any work, wasn’t sick, didn’t lose my hair.  After the first treatment I could actually feel the nodes in  my legs, which were about the size of my index finger, shrinking.  After two treatments I could hardly feel them at all.  I finished the first phase at the end of June and started a new job the second week of July.  Physically, everything was great.

What they don’t tell you about is the emotional effects.

During the treatment phase, you’re like a boxer, throwing punches at the invader of your body.  You’re proactive, doing something about this unwanted guest that has taken up residence.

And then the treatment is done.

And you wait.

Into the Unknown

Cancer.

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No typos there.  Those spaces are there for a reason.  I put them there to give you time to let that word resonate.  So that you would have time to recognize the feelings it triggers.  Fear.  Disbelief.  Confusion.  Numbness.

Shattered.

Now, imagine you get a call from your doctor’s office.  You had a lymph node biopsied a few days before and you’re awaiting the results.  The caller tells you that you should come in right away.  You drive the 25 minutes to the office.  You sit in the waiting room.  Waiting.  Then you sit in the exam room.  Waiting.  The door opens.  She walks in.  And she says that word.  And there is a buzzing in your ears and the world starts to spin and you think of your daughter who is a senior in high school and your son who is away at college and your husband who is at home working in his shop.  And you wonder how you’re going to tell them.  And you ask some questions, give the okay to get some appointments set up.  And you drive the 25 minutes back home, only it seems as if you’re driving through a dream.  No, a nightmare.  Or under water.  And when you arrive home, your husband stands stock still when you walk in because he just got a call from an oncologist to confirm an appointment, and you hadn’t even had a chance to talk to him about that word she said.

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Cancer.

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And suddenly your world looks so very different.  And you begin a journey you would never choose to make.