Paul's Heart

Life As A Dad, And A Survivor

06 May 2020

A Typical Day Today


The easiest way to get through these difficult times, is to keep some sort of routine.  We all have different needs and circumstances for sure.  But as I have often explained before, from personal experience, my chemo battle, you can get through the toughest times of your life, if you take them one day at a time.  Concentrate your energies on that day only.  And if it works for you, make that your routine.  Because the next day, you can look back and say “this worked yesterday, I can make it work today.”  Some would call this “groundhog day thinking.”  Maybe so, but it works.

Knowing I am high risk, I have kept to myself to not only protect myself from my vulnerabilities, but also so that I do not have any impact on anyone else, especially any health care workers.  Their work load is heavy enough without me being another patient for them.

My days are static, routine, not really any fluctuation other than longevity of each activity.

After my morning walk, I spend my time with “to do’s”.  I had been talking about writing a book based on my experience as a cancer patient and survivor, much like I do here on the blog.  The good news, this crisis has finally convinced me that I had the time.  And I am fifteen chapters into this “survival guide” I am nicknaming it.  A couple notable things while doing this project, which I have no idea that I will even finish it, but can I even get it printed.  My goal is just to finish it.  The first thing that has my attention, the details that are still in my mind, fresh as the day that they happened over thirty years ago.  I remember everything, including conversations, word for word.  The second thing, I have been alive to see actual progress in the diagnostics and treatments of Hodgkin’s Lymphoma.  With that came the disappointment and realization of the fact that very little was known about what my body was being put through as far as treatment when it came to long term survival.  I was a guinea pig.

Anyway, staying focused on this being a fun post.  Along with the book project, I am also always working on posts for “Paul’s Heart.”  Both of these I am doing on an old laptop.

Yep, my laptop is almost twenty years old.  A technical issue resulted in an upload upgrade to Windows 8.1, but the operating system is old.  But like everything else I have, I take really good care of my things.  Vinyl records… never a scratch.  Original Nintendo game cartridges, never had to “dust” off any contacts.  My laptop?  I protected it in its case, kept viruses at bay.  In fact, I sill have all the information stickers on the laptop.

One way that I have preserved it so long, is I go through it, looking for things that I can delete or consolidate.  I have not really made a lot of ground on either effort.  But what I have done, has been way more fun.

Do not underestimate the power and the value of reliving your past.  I literally have thousands of photos saved in my laptop.  Places I have been to, things that I have done.  More importantly, so very precious moments with my daughters.  Struggling with the daily repetitive grind of this crisis?  I simply go through album after album of these memories.  There are so many, and I know that I have not seen them all.

Besides a daily walk, with my health concerns with this virus, I do what I can to keep my lungs in the best condition that I can, in spite of their condition.  I could just use the spirometer daily, but as anyone who has ever had to use one, they hate it and using it is boring.  So, a more fun way to exercise my lungs, ask Alexia to play some music.  Because of the reduced capacity of my lungs, I no longer have the technique that I once did.  By the end of the song, I usually end up winded.  But I have accomplished what I wanted, expanding my lungs and keeping them flexible.

I have also been paying attention to what others have been “binging” on Netflix and Amazon.  While my back will not allow me to watch more than two episodes at a time, I have completed Ozark the 3rd season, Hunters, Upload, and of course, Tiger King.  Newsflash, there is going to be a 9th episode (the 8th episode was an after filming episode filmed via social distancing methods).

But the highlight of my day is in the evening.  Getting to talk with my daughters.

Initially reliant as communication between scheduled visits, as we wait for the time that it is safe not only for my daughters, but for me to travel with my health issues, Facetime, Zoom, and House Party allow me to still share our daily experiences.

And that for the most part is how I fill my day, day after day.

Like everyone, I am hoping that this crisis ends soon.  I do not know when it will end.  But in the meantime, I am doing my part not to spread or get infected.  I do not get involved with the whole “forced to do it” movement.  I do it because it is the right thing to do.

Posted in Adoption, Animals, Cancer, Education, Family and Friends, Food, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
05 May 2020

Being Cautious


In the beginning of March, I reached out to the doctor that deals with my long term cancer issues.  I explained to him, that I was concerned about the Coronavirus outbreak, but my heart was set on travelling to see my daughters, one who was about to celebrate her birthday.

I knew I was high risk because of the different factors I have been exposed to over my life, but I also knew how to protect myself around contagions as that was once a job I had in my past.

Of course I had concerns for my children as this outbreak commenced.  Initial reports were that the virus did not have much of an impact on kids, other than at worst a “mild” reaction.  The bigger risk would be that they could be a carrier of the virus, which would of course put me at risk as well if they were unaware if they had Covid19 or not.

I was confident of what I needed to do.  But I still asked my doctor what else could I possibly do to keep myself safe on this trip.  Of course I got the usual “wash hands frequently”, wear a mask, avoid contact as much as possible.  It was the last thing on his list that caught me off guard.  “Make sure you wash your clothes first chance you can.”

Of course, that made sense.  Because the virus could spread with coughs and sneezes, and was able to live on surfaces for up to two days, that would mean the germs could live on any clothing exposed.

Think about it, how many times have you gotten sick, and wondered how?  You did all the proper hygiene stuff like washing hands or hand sanitizer, cough into the crook of your elbow, and avoided contact or sharing things.  But you still got sick.  Because when you got home, you did not get out of the clothing that you were wearing, which probably had been sneezed on or coughed on by someone, and you had not realized it.  And throughout the rest of the evening at home, you thought nothing of it.   You went about your business, which includes touching your face up to twenty times and hour with the hands that have touched your clothes probably just as often.

My doctor’s advice was perfect.  And honestly, for all the viruses every year, I have managed to avoid all of them.  And that is my plan.

Of course now, with businesses in the process of resuming operations again, a thought occurred to me.  We will all assume that restaurants will do their part to keep their facilities and staff as free from the virus as they can.  But what about other businesses?  Car part stores.  Book stores.  Clothing Stores.  The list goes on.  It is up to the business to make sure that everything is kept sanitized and that customers abide by recommendations.

But here is one thought to leave you with.  Male or female, if you go shopping for clothing, do you try clothing on at the store?  We have been told that the bacteria can last for days, so how do you know if the clothing you are trying on, or buying, has not been worn by someone asymptomatic for the virus?  Thereby exposing yourself to the virus.  Or, for the business owner, what do you do with clothing that has been tried on, not knowing if the customer had the virus?

This is all new territory for all of us and we are all learning as we go along.  I am not saying you should stay home, but there are things you need to think about, and most importantly, be cautious about.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
03 May 2020
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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.

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