Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2016”

Remembering Easters With My Dad


There is one unfortunate thing that I had in common with my father, neither of us enjoyed holidays, any of them.  We both had our reasons, similarly, multiple crisis and tragedies that seem to occur at nearly every holiday.  For me, it went a level higher with the spiritual sense, because following my battle with Hodgkin’s Lymphoma, I looked at the big two holidays, Christmas and Easter, for what they were supposed to mean to me, especially given another shot at life.  But the commercialization of all of the holidays, combined with the unfortunate events, just left me really disliking what they holidays were becoming.

My parents divorced when I was very young.  My mother had custody of my sister and I.  But early on, my dad did share some holiday spirit (gifts and Easter candy), though I honestly cannot remember if it was on the actual holidays.  And as I grew, I definitely remember him not being there at all.

I have discussed the relationship with my father in past posts.  Long story short, in my early 20’s, we made amends sort of, agreeing to move on with our lives, build from there, and whatever happened, happened.

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In the mid 1990’s, he and I, along with my brother and sisters started a new tradition.  We did not really recognize the holiday itself, but my father decided that on Easter, he wanted everyone to get together at his house.  My stepmother and Dad would prepare the entire meal.  All we had to do was show up.  And we did.  It was one of the few times that all of us were in a house all together like that.  My stepmother had also begun a tradition, going to a local flea market, and purchasing ceramic Easter eggs which she gave to all the females of the family.

But following a horrific car accident, my stepmother being hit by a car, changed what after a few promising years had become.  For obvious reasons, as she struggled to survive for many months, Easter had been put on hold that year.  But the following year, all us children had decided that we would help my father to once again, hold the Easter dinner.  My brother had actually went and bought the ceramic eggs for my stepmother.  And all the children would contribute food in some form.  Inspired by our effort, my Dad stated that he wanted to take care of the Easter ham.

After the meal was done, we would go outside to hold an Easter egg hunt for my dad’s grandchildren.  My brother and I started a new and weird tradition, doing the Easter dishes.  This would go on for a couple of years.  But another loss, the passing of my sister from a battle with ALL (a blood cancer), we struggled to get together, all with the same efforts.  My brother, other sister, and I would also experience our first divorce during these years since the tradition began.  But for my Dad, we kept on doing it, year after year.

But as much as my dislike for the holidays that I had, with the arrival of my daughters, Easter celebration with my Dad took on a whole new meaning.

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There is no doubt that my daughters played a pivotal role on me giving the celebration of holidays another chance.  Year after year, my daughters would participate in egg hunts along with all of their cousins.

In February of 2013, my father was diagnosed with lung cancer.  Once again we were faced with another Easter being considered for cancellation.  My Dad was concerned that he would not physically be up for it.  But all of us assured my Dad that we wanted to take full responsibility this year, including the ham to keep going what we had grown.  He reluctantly agreed.

Several months later, his cancer turned more aggressive.  He was declared terminal.  And in 2014, as yet another Easter holiday was approaching, this time my father was in a nursing home, in hospice.  We had arranged for my stepmother to be with him, staying in the same nursing home, as they had never been separated before in over 40 years, and we did not want them separated in what could most likely be his last days.  As Easter of 2014 came up, we all decided that we would do Easter together as we had for so many years.

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Easter would be brought to both my Dad and stepmother, and throughout the day, we would all join them.  All the food would be cooked and brought to the home.  And yes, the ceramic eggs were bought.

My Dad passed away a little over a month later.  Easter just does not seem the same.  It is just Sunday to me today.  I know the religious importance of the day as I was taught.  But for all the celebrations and gatherings, the day remains empty for me.

Celebrating Someone Else’s Milestone


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It is funny, having a conversation with my “tweenage” daughter just a few days ago, and then confirming it yesterday, turning 13 years of age, there was no magical transformation.  She was still going to be my “Ting Ting”, a nickname along with a few others that I call her at times.  She was not going to possess any super powers other than the charm she already possesses.  There were not going to be any new special privileges given to her.  So after wishing happy birthday to her, I asked her if she felt any different officially being a teenager.  She said, “no.”

But what Madison fails to realize, is that her turning 13 years old is really a big deal.  She may not realize it, but as her father, I certainly do.  She may be turning her attention to her next milestone, allowing her to be eligible to drive, but as she looks to the future, I am looking at the past.  Madison turning 13 is really a big deal.  It is certainly a big deal to me.

Unable to have biological children due to my treatments for Hodgkin’s Lympoma, it was an opportunity by the country of China to allow what no one else was willing to give a cancer survivor, a chance at adoption.  My cancer survivorship was no issue for Madison or her sister, who was adopted a couple of years later.

But my daughter’s birthday is also reminding me of another issue concerning my health.  In 2008, I officially became a cancer survivor dealing with a lot of serious, permanent, and progressive health problems.  And as my health was turned over to one of the top hospitals in the country for cancer and survivorship, I met the doctor who would spearhead my survival with one goal in mind.  And I quote the words I will never forget from Dr. O.,

“I can’t stop the things that are happening to your body.  I can’t reverse the damage that has been done.  But what I can do, is slow the process down.  I want to make sure that you not only see your daughters graduate high school, but college, maybe if they get married.  But I want to help you see your grandchildren.”

It seemed like an odd conversation at the time.  After all, my oldest was only around 5 years old.  But I had just survived a near fatal heart episode, and with awareness, and surveillance, and history not on a survivor’s side when they do not receive the proper medical attention, I knew that Dr. O. meant what he said.  He wants to make sure that I see my daughters grow well into adulthood.

I am not worried that my oldest turning 13, means that a clock is running out for me.  Quite the contrary, Dr. O. is in fact doing everything he can to make sure that my health stays solid enough to see the ultimate milestone for me.  But in the eight years since, while it has not been easy getting to see Madison’s special birthday, I know that I am doing all that I can, and Dr. O. is doing all he can as well as everyone else involved in my care to make sure that I continue to see more birthdays ahead for both of my daughters.

Call It Like It Is – That Is All I Ask


I am a little bit frustrated today by a couple of things.  The day actually started out pretty good, just wanting a trim for my ever-growing long hair.  You see, I decided to let it grow, because one of the only things that I can donate since my body is “damaged” from chemotherapy and radiation therapy, is my hair.  While there many my age who would even love to have 1/4 the coverage that I currently have at our age, I am even more thrilled that it is less than 5% gray, my natural color.  So, I had no doubt, there would be much interest in my hair.

Now after carefully considering organizations to donate my hair through, because there are some that either do not donate all the hair donated, or worse, charge cancer patients who need the wigs that are made, I visited a salon who was connected to the organization that I had selected.

Then I received the news.  My hair, which is currently at its longest length prior to my cancer days, was not near long enough.  Now I know, it is natural to think a woman’s desire in length would require a longer donation, but I would have thought my length, which is now past my shoulders would have been more than enough for a young child or man.  Another five inches of length is required.

While some may consider my hair length “rock star” length, or “cousin It”, I have enjoyed the length in the back because it covers permanent damage from radiation therapy.  Alas, even I do not think I can last another five inches of length at this point.  So while I am waiting to get my hair “trimmed” a couple of inches to a more manageable length, I read an article across my Facebook feed from back in my home state of Pennsylvania, leading to my second frustration of the day.

The web site “Thedailychronic.net” headline read, “Pennsylvania Medical Marijuana Blocked by Rep. Matt Baker”.  Of course, my blood immediately begins to boil, because I am a huge supporter of medicinal marijuana for patients.  There was a push for approval in Florida last year that just fell short, and the push has begun again this year.  There is hopes that a compassionate bill to help chronically and terminally ill patients find relief from the pains and discomforts they face every day.

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Senate Bill #3 passed the PA house overwhelmingly 149-43 making the medicinal use of marijuana legal in the state of Pennsylvania.  It was not happen if one Representative Matt Baker had his way threatening to not allow his committee to take up the Senate’s bill, EVER!  The PA Senate previously approved the bill 40-7.  And polling among Pennsylvanians showed well over 85% support of this tightly written proposal, Baker was simply against it.

Looking at Baker’s campaign contributions, you will see many, a lot, numerous, several, too many contributions from Big Pharm.  The same companies that make the expensive, addictive, and sometimes lethal painkillers and anxiety medicines which many patients cannot even afford.

Call it like it is.  Big Pharm loses out big time on profits if medicinal marijuana is approved because it will be less costly.  It certainly is not addictive and to my knowledge, has never killed anyone.  Not like the many opioids and antidepressants (you know, the ones that tell you flat out in their disclaimers with side effects “may cause thoughts of suicide” to name just one) that have resulted in the deaths of so many.

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According to Thedailychronic.net, Baker received over $37,000 in campaign contributions from Big Pharm manufacturers, pharmacies, and drug wholesalers.  You cannot tell me that those contributions will not carry more power than the compassionate concerns of the people.

Fortunately, it looks like this bill will finally get to Governor Tom Wolf for his promised signature.  Finally patients in the state of Pennsylvania will finally have another method of relief from chronic and terminal illnesses such as Cancer, HIV/AIDS, ALS, Parkinson’s, MS, epilepsy, Hungtington’s, Chrone’s, PTSD, seizures, sickle cell, autism, and of course chronic and severe pain.  Pennsylvania will hopefully be the next state to join others in making compassion a priority to its residents.

And Mr. Baker, if you wish change my opinion to convince me otherwise that you care about what patients go through, perhaps in your photo gallery, you might post other photos besides opportunities with a whole bunch of suits.  Try showing you care by being photographed with a constituent you want to deny relief to.  But all I see is the money you would be concerned about not getting for your re-election because your contributors are more concerned about losing profits.

Florida, you are up next.

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