Paul's Heart

Life As A Dad, And A Survivor

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.

Adding A New Tool To Math


I have a unique situation with my children.  We live more than a thousand miles apart.  But from the day that their mother and I officially separated, I knew communication would be an important factor to maintaining the father/daughter relationship as they grow.

Unlike my childhood, when my parents split up, my father lived fairly local.  But there were choices that he made, and long story short, his visits eventually became less frequent, phone calls eventually faded, holidays and birthdays no longer mattered.  Again, this was a choice that he made.  And this was in spite of him living locally.

But here in the 21st century, technology has enabled our society with a tremendous tool to communicate back and forth, more valuable than the telephone, because video images, in real time, allow us to now have conversations face to face with each other, no matter where we are.  Programs like Skype, Tango, Oovoo, and the popular Facetime, allow us to talk, see smiles, share tears, experience sincerity and other emotions.  Having experienced the communications issue with my father growing up, I knew this would be a critical component when it came to a custody agreement.

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So on a daily basis, on occasion more than once a day, I speak, and see, both my daughters in between the times they visit with me.  I say more than once a day, because besides the nightly “miss you” and “love you”, we have found another way to keep our relationship in tact, and my value as their father.  Just as I did when I was in the home before the separation, I was the parent that helped with homework and studying.  And with Facetime, I am able to continue this, along with using internet tools provided by the schools.  Just as I did when I was in the home before the separation, I am, continue to be, and will always be involved in my daughters’ educations.

But technology has provided to be even more valuable than that.  Recently, one of my daughters has been having an issue with one of her subjects.  And in spite of my help, still seems to struggle.  I have been reaching out repeatedly to their teachers and guidance counselor for help, tutors, anyone who could help my daughter.  Unfortunately, the school district no longer refers tutors as procedures do not allow.  I am guessing it has something to do with a litigious reason, somebody complained, sued, and now no student can get help.

Enter my world of Hodgkin’s Lymphoma, and the internet, a fellow survivor that I am frequently in contact with, was aware of my plight with my daughter’s math situation.  She spoke with her daughter who is in a grade several years further, and offered to tutor my daughter, from 2/3 of the way across the country, via Facetime.  And so, having access to the math program, the lessons for the week, and a planned quiz, the first tutor session resulted in a 95% score on that quiz.  In what can be equated to a digital penpal, my daughter is showing hope again for a course that she knew she was struggling with, and would have to face even more difficulties next year.

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It is one thing to not be able to provide help locally, but totally amazing that from one of my personal worlds, I have been able to find help in dealing with another.  Because of a friend, who I had only known through a support group for long term survivors of the same cancer I have survived, and only recently physically meant, my daughter’s education is now going to take a huge turn in a positive direction.

And I am fairly certain, my friend’s daughter, along with her other children are good kids.  And I would not doubt it, given the nature of both my daughters, and my friend’s children, that thanks to Facetime, more than just an educational relationship will develop.  Like I said, in the day of technology, this is the new version of being a “penpal.”

I am thankful to my friend for allowing this to happen.  We have both been through our individual experiences with our cancer survivorship, and other physical issues not related.  But with her kindness and thoughtfulness, it enabled me to provide another level of assistance in my daughter’s education.

Thank you.

SAVE THIS INFORMATION!!! SHARE THIS INFORMATION!!!


There has been a lot of conversation on several of my Lymphoma pages and web sites, as well as my personal pages of people battling the flu and other ailments right now.  But before I lose anyone, I want to stress that this post is not just for cancer patients.  I also urge you to save this information, share the information, and feel free to print the picture posted below:

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I am just one of those that happens to pay a lot of attention to illness rates and the medical care received.  I have to.  As a long term survivor of Hodgkin’s Lymphoma, and having lost my spleen during the diagnostic and staging process, and also living with heart issues (courtesy of my Lymphoma treatments), this card has saved my life at least twice.

You do not have had to battle cancer to have lost your spleen.  Many over time have lost their spleen due to accidents such as automobile or falls.  But what was once thought of as a “useless” organ, medicine in recent years has learned that it makes a huge difference in the battles against infection.  And because of that, precautions must be taken.  Many of us are aware of our fragile situations, many are not.

So it is simple.  If you have had Lymphoma, splenectomy (asplenic), have any immune deficiency (like Vitamin D) or compromised immune system (such as those with Lupus and Rheumatoid Arthritis), or cardiac issues, please pay close attention to the information on this card.  My card specifically lists me as “asplenic”, no spleen.  You can make up your own card, shrink it, and laminate it.  But make sure that you keep it with you at all times.

This card was given to me by my doctor, one of the top doctors in the country for Hodgkin’s Lymphoma and late effects at Memorial Sloan Kettering Cancer Center.  The information is crucial.  And it will make a huge difference if dealt with in time.

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