Paul's Heart

Life As A Dad, And A Survivor

06 Jan 2013

I’m A Dad


Chemotherapy took away any opportunity to have children.  It was one drug in particular.  Had they given me less, future research even confirmed, fertility would be spared.  Still having the desire to have a baby with my 1st wife, those plans fell through quick than a piano being lowered out the window onto a clueless Wile E. Coyote.  The long story short, she did not want to have them and waited 14 years to tell me.  My marriaged ended on this lie, leading me to believe that someday I would become a dad.  All I ever wanted.

Almost immediately, and historically, I hooked up with my eventual wife.  All the awkwardness was out of the way.  She was looking for a relationship so that she could be a good Catholic mom,  I was looking to move on to yet another woman as I have issues with being alone.  Together, we discussed our options with me shooting blanks, no chips in the cookie dough, etc.  In spite of her Catholic upbringing, Wendy was willing to try scientific means.  Of course, we had to confirm my guys were definitely dead, which they were.  After all the testing, together we went through 6 rounds of artificial insemination in an attempt to get pregnant,  Some of the procedures left us feeling hopeful, this might be the time, only to be disappointed.  When those came to a junction to “what’s next” it was going to be the more expensive in vitro process.  The problem with that, we only had one financial shot.  We had talked about adopting, but nothing was final.  Until now.

My fertility issues had been resolved long ago, but nothing had been diagnosed with Wendy yet.  But she needed to make a decision without that closure.  In a calm voice, I simply asked, “Wendy, do you want to a mom, or do you want to give birth?  With one choice, both might happen, but neight might also,  But you can be a mom by adopting.  Is the issue that you are looking for all the pregnancy symptoms just to say you did it?  Or do you want to hold the baby in your arms?

We made the decision to adopt.  We found a local agency who held an informational meeting.  But there was a special guest, her name was Lily Grace.  But we fell in love with her instantly.  We were going to adopt from China.  Much paperwork later, a lot of money, we were standing in the notary office in Nanchang and little Fu Shu Ting was being placed in the arms of Jiangxi Family 7 – us.  The emotions were so overwhelming.  So this is what it feels like emotionally to give birth.  I know there can be no comparison, but for me, two minutes went by and Wendy and I  both looked at each other “We are definitely going to do this again”.  And we did, nearly two years later we had our second daughter.

Tomorrow, both start their new grades in school.  I have tried to prepare them, that it will be a little harder, which means a little harder effort at home.  But this is going to be the fun period throwing Science and Social Studies into the mix.  We have their back packs packed and ready to go.  I hope this year goes slower.  Their teachers are always so good and my daughters love having them for teachers.

I’m a dad!  I love being a dad!

Posted in Adoption, Family and Friends | Leave a comment
06 Jan 2013

Well Read Or Do I Just Know Too Much?


You go to a doctor with a sore throat, a cut that needs more than a bandaid, or possibly recurring headaches.  When the office visit is over, hopefully you have gotten your diagnosis or treatment, and you are on your way to recovery.  But what happens when you are dealing with an issue that is not common enough or is something that your doctor or nurse practitioner has not seen since Med School?  Hopefully you are not brushed off with a “general” diagnosis and told to give it time.  If you are lucky, your doctor will refer you out to a specialist.  But even that is not a sure thing because your doctor does not know what is wrong with you, how will your doctor know what specialist to send you to?  And going to the wrong specialist will only continue the torment of “we really have no idea” and again, the cycle repeats.

The world of the long term cancer survivor turns just like that.  Looking at me, I appear like a typical 46 year old male.  Listening to my day’s activities, there is nothing that stands out to anyone.  But a couple of decades ago, I made a choice to undergo radiation and chemotherapy treatments so that I could survive cancer.  Normally, a side effect is something you experience while you are taking a treatment or remedy.  After all, when you look at the bottle of medicine, or watch the commercials, you get the information on “possible” side effects.  But there is a difference between short term and long term.  What you see on the bottle and hear on TV is short term.  These are the side effects that are known and must be revealed according to FDA regulations.  This way you know the risks involved with your treatment.

A little known fact?  Not all side effects are listed on the bottles or stated in the commercials.  This does not mean that they do not exist, but if the number of patients is so minimal, the side effects may not be required to be publicly stated when advertised.  But God help you if you develop one of those side effects.  Again, because it is not the obvious, a patient has the possibility of not being taken seriously.  And this is a mistake.  Sometimes, it can be a fatal mistake.

Then there are those side effects that do not happen for a long time.  Do you recall Three Mile Island or Chernobyl?  News programs raised the risks of lingering effects by simply saying, who knows?

With cancer, it used to be that patients were not expected to live too long after their remissions.  In fact, a mythical mark of five years to this day, is still a goal that survivors strive to achive because now, so many more people survive cancer longer than that.  And the longer you went past five years, the better your chances for survival.  With the good comes the bad.  Researchers never really researched the long term effects of radiation, chemotherapy drugs, and even surgeries (such as splenectomies).

When you go to the doctor for the flu, or a broken arm, you are followed up by your doctor until your deemed cured or healed.  After that, you are on your own.  Up until recent years, cancer patients were treated the same way, and it definitely seemed tied to the “5 year mark.”  Whether short term or long term, side effects need time to develop.  If you get nausea while taking an antibiotic, you complain about it, and perhaps something different is prescribed.  But this is only by diligence by you or observation of your doctor.

But what happens when you are exposed to all the toxicity, hazards, and challenges brought on by your cancer diagnosis and treatment, and you are not followed up on?  We all know, the sooner you catch something, the better, right?  That is the way it worked with my Hodgkin’s.  It was caught early.  But over the years, I had no idea that my body has been failing.  My cardiac system, respiratory system, muscular, spinal, and the list goes on, have all been affected.  Again, on the outside, I look like a normal 46 year old, and any doctor who were to look at me, or listen to a concern, would treat me that way.

But because of my ails over the years, I have learned so much about my health, my long term side effects.  My primary care physician relies on me to “teach” her this “new” medicine.  You cannot correct an irradiated heart like you would a normal abused-by-yummy-diet hearts.  A doctor who is not trained in these late effects (see other posts of mine under “Hodgkin’s Disease – Side Effects) who happens to stumble on my bodies ill effects, can find themselves in trouble, leading me to be at risk.  But these are things that I have learned over time.  I possess all records pertaining to my cancer past, and everything that has occurred to me since.

But the time does come, when I must deal with another ER doctor, express my latest concerns, trying to convince them that I am not a “typical” case, and again, when they cannot figure out what is causing the latest symptoms, in spite of my assertions, I hear “well, you are very well read”.  So on top of what is making me ill at the present time, the doctor-de-jur feels that I have planted the crisis in my head, “well read”.

Yes, I do know a lot about the human body, especially mine.  I know about everything that has been done to me.  I know of most of the risks to me from my past.  I question the risks that I am put in trying to correct new diagnosis as they come up.  But nothing is more frustrating, and perhaps risking mortality, than to just consider me “well read”.  Another term that gets tossed around like “well read”, hypochondriac.  Truth be told, I would rather be a hypochondriac.  And as each new issue is brought up, I breath a sigh of relief, that the right person listened to me, found my emergency alert bracelet, and my medical information cards in my wallet (what to do with me if I am unresponsive).

I will accept the term “well read” because that is a compliment to me that I know what I am talking about, I am knowledgable.  But I know what someone else might mean calling me “well read”.  I forgive you.

Posted in Cancer | Leave a comment
06 Jan 2013

Happy Birthday To Me


 

The following was a fun piece to write – I have chosen this particular “moment” to shock my family.  It is fictional in content.

Here it is, the middle of December, exactly five days away from my big day.  So of course, I must now be paranoid that any time we go to a restaurant my children will blab to the waitress that it is my birthday.  At some point in the next week, my wife’s family will also insist on a birthday dinner. 

Here is how it plays out.  Dinner is done.  So far so good.  Okay, here comes the cake and the gaggle of waitresses.  They do whatever birthday chant they have done over and over and probably dread singing it almost as much as I dread listening to it.  This particular birthday wish, is a military cadence – foot marching, hands clapping.  “I don’t know but I’ve been told.  This customer is getting old.  A birthday wish from us to you, and hear you’re turning 42.”  Nice, they even got my age in on that one.

I do not ask for any gifts, for any occasion.  Decades ago, an understanding was reached with the supreme being that I believe in.  And again four years ago, I was reminded of that understanding.  As a result of my survival from cancer and heart surgery, I received the greatest gift of all:  my life.  There is no greater gift that I could ask for or need.

But this birthday will be different.  A door of opportunity is opening, and the circumstances are aligning themselves like Jupiter with Mars when the moon is in the seventh house.  Along with my wife Wendy, and our daughters, we are joined by my in-laws and Wendy’s sister and husband.  My family did not get invited to this dinner, but when they are eventually told of tonight’s news, I know the reaction will be received more positively.  But that is another story.  Tonight, I unwrap a gift from me to me.  No one has any idea what I am about to state, including Wendy.  Though the topic has come up a couple of times during our marriage, Wendy has always remained firm with her choice, which does not agree with mine.  Tonight, our lives will change.

I interrupt the conversations at the table.  I visualize standing at the bottom of a huge, snow capped mountain when just the slightest noise causes a crack in the cap.  Then it begins.  The unstoppable onslaught of an avalanche.  The path of the avalanche is unknown.  The strength of the impact is sure to change my life as the snow rushes towards me.  There is no turning back from what I am about to start.

 ”Um… Wendy and I are going to be selling the house next year.”  I know that our table had the loudest conversation (wife, sister-in-awl, mother-in-law all talking simultaneously) but it seems the entire restaurant went silent as I got our family’s attention.  In the split seconds that follow, I scan everyone at our table.  Wendy has two projections at this moment.  The first is directed at me, for the lack of inclusion and discussion prior to this announcement.   The second look from Wendy is directed to her family – denial.  There was a denial of moving, denial of any contemplations of moving, and denial of her even know that I had the thought in my head.

Continuing to look around the table for reactions, Wendy’s sister seems to be taking it all in.  So before jumping into the conversation, or on Wendy and I, she methodically contemplates her comments.  On the other hand, Wendy’s mother is raring to go.  “What do you want to go and do that for?  Wendy’s father is much more laid back.  Our eight year old Madison has a habit of picking up only key words of adult conversations and then kicks up the drama with the look of concern.  “We’re moving?”  Then she switches gears, “YEAH!!  Are we moving tomorrow?”  Not to be outdone is our six year old Emmalie, who routinely just blurts out nonsensical words because it amuses her, but this time it ends up being an exclaimation point to the conversation.  “BOO YAH”.  Awkward pause.

I lay under tons of crushing snow now.  The damage has been done.  All I can do now, is hope for recovery and be given a second chance.  This is clearly a situation that I did not want to be in, but that does not change the fact that it did happen.  I must dig my way, up through the snow in hopes of reaching daylight.  I rely on hearing voices to know that I have come out of the hole that I am currently in.

 The multi-voice conversation picks back up, clearly several decidbles higher.  As usual I am not included in this conversation as is custom in Wendy’s family for the men.  Our daughters have returned their attention to Daddy’s birthday cake.  I let a few minutes go by and then I interrupt them again.

 ”This is not a decision that is being made lightly because there are so many factors that have played a vital part.”  Wendy and I have worked for the same employer for fifteen years.  I continue to explain that in five months our contract at work will expire.  Over the past two contracts, resistance to signing new contracts has grown, resulting in a growing effort and support for calling a strike.  I am convinced that if our union walks the picket line, we will lose our jobs.  There are already people in place to fill company needs.  The best case scenario if this were to happen, is that at least hopefully one of us would be hired back or retained as a non-union employee.  This would result in a financially devastating 75% loss of income in our household.  This cannot be overcome.

Our only option, while we are still in good standing financially, is to sell the house before our finances fall into disastrous disarray and beyond our ability to control our financial fate.  The only way to sell the house without too much of a loss, is if the mortgage is current.  Falling behind on our mortgage gives the advantage to the buyer and works against us.  Earning one fourth of our income will make it impossible to afford real estate in this area.  This leaves only one option, to relocate.

The change in our employment status will have another major impact.  We will no longer have access to the specialized health care that we rely on.  A major factor that contributes to our health issues, though not the origin, is stress.  In order for us to survive health-wise, without the special health care, we would need to base our decision on a new residence based on the level of stress that would be cast upon us.  In other words, we will need to live in an area that will be within our means.

Where we live and what we have can no longer be based on the need of approval by others. 

Where we end up will have no impact on familial events and visits.  Therefore the main factors affecting our relocation will be our daughters and their education, and what will be affordable to us.  Currently, areas that I have been looking at are Lake Erie, Vermont, and Colorado.  All have a weather climate that is comfortable to us, have jobs available, and affordable housing.  I tell everyone that they are all welcome to visit any time, just like they do now.

I end my announcement with “Anyone for some cake?”  Just like the icing on top of the cake, that was sweet.

Posted in Family and Friends | Leave a comment

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