Paul's Heart

Life As A Dad, And A Survivor

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In Recognition Of World Cancer Day

Today is World Cancer Day, established back in 2000.  It is a day that many cancer patients and survivors take time to recognize, that they are not alone in their fight.  It is a day of hope for awareness and support.

I am approaching my 31st year in remission of Hodgkin’s Lymphoma next month.  I am the lone survivor of cancer of four other family members, who faced other forms of cancer.

In my decades of survivorship, I have been blessed not only with longevity in spite of cancer, I have met literally thousands of other cancer survivors in one form or another.  I am even fortunate to know of other survivors who are decades ahead of me in lifespan.

I have witnessed the progress of diagnostics, treatments, follow-up protocols, as well as the increase in rates of survivorship.  In less than 30 years, my modes of treatment are considered obsolete.

I have faced my share of health issues that are caused by my treatments from long ago.  But that has not stopped me from living life.  I do what I am able and I enjoy it.  Sure I miss many of the things that I used to do, but I have found other things to do instead.

But my biggest blessings are my daughters, my reason for every tomorrow I get to experience.

I have not only gotten to become a father, I have been able to watch them grow.  And now, I prepare to witness their next phases of their lives.  I never take this for granted.

I have also experienced my share of sorrow as I mentioned multiple family members I have lost, but also friends and other acquaintances.

No matter where you are in the world of cancer, a patient, a survivor, a caregiver, or if you have been someone fortunate to never have been touched by cancer, please keep everyone in your mind and hearts, not just on this day, but every day.  No struggles are the same, and successes are not necessarily guaranteed.  That is why we have to capitalize each possible moment we have with each other.  Because it can all change with three simple words… “you have cancer.”

In closing, I found some inspirational quotes that I would like to share on this day, that I found on the web site,

“Working out is my way of saying to cancer, ‘You’re trying to invade my body; you’re trying to take me away from my daughters, but I’m stronger than you. And I’m going to hit harder than you.” – Stuart Scott

“There’s no one way to tell how our experiences change us or shape us. Not all transformations are visible. What I’ve learnt is to never let it hold me back. I’d rather dress up and show up!” –Sonali Bendre

“Time is shortening. But every day that I challenge this cancer and survive is a victory for me.” – Ingrid Bergman

On this day, those who are now facing cancer, perhaps just diagnosed, you can get through this.  For those who are close to completing treatments or have done so, YOU DID IT!  For those in remission, I say this, a popular expression I have used over the years, “as I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”  And for those who have longevity greater than mine, you are my true inspiration for not only lays ahead for me, but drives me to want that as well.

Guest Author And Fellow Long Term Survivor – Lynn

A few weeks ago, I had put out a challenge to friends of mine to honor medical personnel who are making the sacrifices, too many, the ultimate sacrifice, by putting into words, by example, of just how extraordinary these people are, whether you know them personally or not.  The fact is, they exist.  And they are making a difference.

Lynn, pictured in between two other fellow long term Hodgkin’s survivors, is a long term cancer survivor such as myself, her late term issues, some different, and some similar to mine.  The following is her story that she wished to share on “Paul’s Heart,” in her own words.

Thanks to Two Great Doctors

A FaceBook friend, from one of The Hodgkin’s Lymphoma Survivors’ groups, asked us to post about favorite doctors and/or nurses. There are two doctors in particular I will never forget.

While my husband, who was a 2nd Lieutenant in the Air Force, and I were living at George AF Base, California, I discovered a swollen area near my left clavicle while packing to move to a new base. I showed it to him, and we decided we could wait till we arrived at Moody AF Base in Georgia. Apparently, Scott was more worried than I realized, because he told a Flight Surgeon at Luke AF Base in Phoenix, while traveling to Georgia. We had stopped in Sun City, AZ to visit Scott’s Mom and sister, Karen, for Christmas before moving. Scott had bronchitis and went to be checked. The Flight Surgeon told Scott to bring me out the next day. Testing was done, and nothing could be decided until I had a biopsy. So, it was decided the biopsy would be done at the base in Georgia. Before we left the Flight Surgeon’s office, I asked him what he thought was wrong with me. He said it could be Cat Scratch fever, Hodgkin’s Disease, or something else. The biopsy would tell.

We traveled across the U.S. sometimes silent, and sometimes talking about what was going to happen. I was also pregnant with my first child. We were both very excited about having a baby, but concerned what was wrong with me. We arrived at Moody AFB in early January. I went to the Base Hospital as soon as possible to the obstetrics department. It was decided, because I was pregnant, not to do the biopsy right away. Finally, on March 9th I had the biopsy.

A few days later, I was called to Dr. Jerome Cohen.’s office. He was a young internist, probably in his late 20s. He was a very caring person. I knew what he was going to tell me, so I sat and wrote my questions out to take with Scott and I. Dr. Cohen. had a difficult time getting the words out. I finally said, I have Hodgkin’s Disease, don’t I? Through tears, he said, “yes”. I asked him my questions, “Would my baby be ok?, What would I have to go through? Would I die?” were just some of the questions. I was told through tears that I would have my son at Moody and then be sent to Biloxi, Mississippi at Keesler AFB, because it was a bigger facility.

All went well with the birth of our son. He was very healthy. We named him Ryan Scott. I was able to stay home till the end of April when Scott drove me to Biloxi. His sister, Karen, came to watch Ryan. When I arrived, I was given a Staging laparotomy (all your major organs are biopsied, appendix and spleen removed). A doctor told me I had Hodgkin’s, Stage II A. I had a few days of care on the surgical ward and went home for a few weeks. It was great to have some time home with my baby and husband. In June, I went back to Keesler AFB to begin radiation treatment. That was the treatment decided upon by a Board of Doctors. This time back is when I met Dr. Rand Altemos.

He was only a few years older than me, not very tall, with brown hair. Dr. Altemos was friendly and caring. I soon found out that most of the patients called him, “Sugar Bear” like the bear on the cereal commercials. Dr. Altemos checked on me everyday at rounds. Several times, he came in, sat on the end of my bed, and looked at baby pictures I had just received in the mail. I think I was extremely fortunate to have someone like Dr. Altemos as my oncologist. I was 25, had a new baby over 300 miles from me, had cancer and didn’t know if I was going to live or die. Dr. Altemos was there comforting me and reassuring me.

In October I went home to our base housing at Moody AF Base. Scott and I were so happy.  We could finally try to be a normal family and try to put the past behind us. The day after Thanksgiving, Ryan and I drove to Decatur near Atlanta, GA to visit Scott’s father and step-mother. Scott was leaving the next day for peace-time war maneuvers at Nellis AF Base near Las Vegas. Scott called me over the weekend from the Atlanta airport to tell me he had been delayed. He also told me how much he loved me and our son. He kept saying he needed me to know how much he loved me! I think now it was a premonition. Scott was the navigator in an F-4 and the pilot’s name was Rick. They were killed in the F-4 doing peace time war maneuvers.

That first week was a haze. My parents came, Scott’s parents and sister came, and Scott’s grandparents came from Florida. My parents were watching Ryan while my father-in-law, Dick, and my stepmother-in-law took me out to get a dress to wear to the funeral we hoped we could hold on Saturday. That’s when Scott’s grandparents showed up at our Base house. My Mom handed Ryan to his great-grandmother. Very soon, she yelled for my Mom to take back Ryan, clutched her chest, and began to fall.

My parents caught her. The ambulance was called, she was taken to the A. F. Base Hospital about a mile away, and my sweet Dr. Cohen became her doctor. As soon as we were told when we came home, we went to the hospital. Dr. Cohen met us and told us time would tell. We stayed for awhile until Dr. Jerome told us to go get rest, and he would call if anything happened. About 1 am my phone rang, and it was Dr. Cohen telling me to come quickly because Scott’s Grandmother Jane wasn’t going to be with us long. I got dressed and rushed over. Dr. Cohen came out to meet me. He shook his head and said he couldn’t believe all I had been through. I went into her room, held her hand, and told her I loved her. Dick and Lou had not arrived yet. A sheriff’s deputy had to go get them, because there was no room phone and no cell phones back in the 1970s. Eventually, they arrived, and I left so they had time to say goodbye.

Dr. Jerome was another caring doctor who went the extra mile for his patients. I always hoped that I could someday see Dr. Jerome Cohen and Dr. Rand Altemos to thank them personally.

They were doctors I have never forgotten.

Eyes On The Prize – 30 Years Later

Today marks the 5th anniversary that my father passed away from complications of lung cancer.  It also marks the 30th anniversary of what would have been my first marriage, occurring just after the completion of my treatment for Hodgkin’s Lymphoma.  Two days that will always stand out in my mind.

This is the only photo to my knowledge that exists of my grandmother and I together, who also happened to be the first cancer survivor I would personally know.  Took place 30 years ago on this date, a date I honestly thought I might never have seen.  And yes, I would like to be able to say this might have been a prom photo instead, and though I was quite young in the photo, this was the tux I wore for the wedding.

Diagnosed with Hodgkin’s Lymphoma in November of 1988, just over six months before I was to get married, I fought against anyone and anything that was going to change our plans.  The stern warnings from the doctors that “timing is everything with Hodgkin’s” and “chemo is the better option,” I called the shots.  I was going to be the only one who determined that I got through this in time.  This was not just for me, but for my fiance.

I went through months of testing and diagnosing, including a major diagnostic surgery that laid me out for a month of recovery.  I went through six weeks of intense radiation therapy, my upper body fried to a crisp.  But I got to that goal, I was done with everything, in time to recover for this day.  We were busy making arrangements, and due to the skin issues I was dealing with from the radiation, we had to make alternative honeymoon arrangements.

As far as the doctors were concerned, well, at least I was, I was good to go.  See you in June after the honeymoon.  I do not have many memories of that day, not because I do not want to remember, but a complication of the lingering effects of chemotherapy, often referred to as “chemo brain,” but that is another post.  But from what I can remember, it was a fun, worry free party.  Definitely no signs of cancer in my body, or at the wedding.

But as I mentioned in one of my earlier posts in this chain, and other posts, not just during the cancer journey, but during relationships, especially marriages, communication is the most important tool two people need to have.

Flashing back to when I informed my fiance that I had cancer, I told her, “I have no idea how this is going to turn out.  There is the chance I might not even make it.  Certainly, this will not be the fairy tale plan you may have had as a little girl.”

My grandmother was a key role model in my younger years.  She taught me many things, most importantly to care for others before myself.  I would always be strong enough to take care of myself, but others might need help, and I should do what I can to help.  Empathy would become one of my main characteristics, something that I have always made a priority with my daughters.  It is who I was then, and who I am now.

There were two problems that were developing though almost immediately following the wedding, that we did not see coming.  I mentioned communication.  My fiance and I had spent so much time, me juggling my doctor and treatment appointments, the arrangements that she had taken on for the wedding, and of course, we both worked full time.  You can see something had been left out.  We were not leaving time for each other to talk to each other.  And I am not just talking about the upcoming nuptials either.

We really had no opportunity to speak of what our ideas were for our marriage, home, children.  But then there was also the emotions that I would face with the fear of recurrence, survivorship guilt, but something else.

Prior to my diagnosis, I was living a good life, a happy life, enjoying each day, often as a party.  My fiance and I had everything going for us, and that meant that left little time for anything or anyone else.

So, upon the completion of my radiation treatments, my fiance told me, “now we can just put this behind us and get on with our lives.”  Sounded like a simple plan.  But with things finally settling down, reality set in, with a strong reminder.  That was not who I was, and still am.

I was grateful for all who played a role in my beating Hodgkin’s and clearly there was no way that I would be able to repay any of them in any form.  The only way I felt I could show my appreciation was to do so by “paying forward,” in other words, doing what I had always done, help others.

I am getting ahead of myself.  I was not at this point yet.  The point is, I never spoke of these feelings with my fiance, my wife.  We never had the conversations about me not being able to just “let go” of my cancer.  That is not to say that every day of my life is dominated by cancer.  Far from the contrary.

While May 20th, 1989 was indeed a happy day, we were not prepared going into that day, for what was going to be ahead for us.  And that was because of the lack of communication.  We had emotions that were not discussed or revealed, just pushed aside.  And they would have to be dealt with eventually, they always do.

Not really a spoiler alert, as you know, the anniversary clock on this page to my 30 years clear still has a ways to go.  So, up next, the honeymoon, no details there, but a follow up with my oncologist once I got back that would change everything.

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