Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “June 23, 2015”

Scanxiety


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If there is one feeling possibly worse than the possible diagnosis of cancer, it is the anticipation of a pending PET scan (the current standard for declaring a patient is in remission, or is still in remission).

I try not to publish two posts in one day, but a have several Facebook friends who are going through scans or receiving news about the results of their scans today through the upcoming weeks.  So, as one thing I have tried to justify my survivorship as a long term cancer survivor, I want to offer this hope.

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Many people reading “Paul’s Heart” are also members of on-line support groups as well as Facebook pages.  These support areas can be cancer specific, or cancer general.  And these can be a great tool from support to information.  But there has to be an awareness of balance if you subscribe to any of these groups.

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Here is the logic you need to understand.  If you did not have cancer, would you be on a support web list? Of course you would not.  If  you are dealing with cancer, would you be on a support list?  Most likely.  Unlike when I went through my treatments for Hodgkin’s Lymphoma, I never had the internet for support.  But then, what about the period of time, once you have heard, or expect to hear the word remission?  Would you still plan on participating on these support sites anymore?  There is a good likelihood not.  All we want as a cancer patient is to be done with it, once and for all.  Only the few, like me, stick around.  But for the most part, only people that need help, will seek help.

One of the biggest fears resulting from “scanxiety” is that a patient will not get to hear the word remission, or worse, hear the word relapse.  And these are real possibilities.  They do occur.  But if you participate in internet support groups, there are chances you will hear a lot more about relapses, than you will hear about long term cures.  And why would that be?  Someone who has been cured, like mentioned earlier, will most likely want to move on.  That patient has no need to be on an internet support group.  But the patient who is still dealing with cancer, or must deal with it again, will be on the internet.  So again, using logic, just because you cannot see all the long term cures, does not mean they are not there.  But in fact, they are there, in great numbers.  Over 12,000,000 of us.

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I do know how many of you are feeling right now.  In over 25 years, I have met thousands of cancer survivors, many of which I still hear from.  I know what each and every one of you feel, as you do the  mid-point scan, the post treatment scan, and all the other scans after that.  It does get easier.  You have to believe that what you have gone through is enough.  And here is where some tough love is going to come in… and if by some chance, you are still dealing with it… what are you going to do about it?  You are going to keep fighting because that is who you are.

If you have just completed scans recently, or will be getting them done soon, my thoughts are with each and every one of you.  I hope you all get to hear the word remission, or at least, the disease is decreasing.  From there, following the news of remission, will be the six month anniversary, the first anniversary, the fifth anniversary, the 10th, and then like me, the 25th!

Try not to be overwhelmed by what you see others going through.  They are going through their own battle.  You have one thing to do, get through that scan and get on that road of remission.  Speaking of which, a closing line I am known to use with people who reach remission…

“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 if you are not on that highway yet, hurry up.  Once you get on it, it’s a great ride!”

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I Can’t Wait For Christmas!!


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Anyone who knows me personally, after seeing the title of this post, has probably thought, “okay, Paul has finally lost it.”  I am normally quite strict about the time frame for recognizing the Christmas season.  But this year it is different.

Before I get started, I need to preface with this, I have a lot of health issues, some quite serious.  I have good days, and I have bad days.  But it was a conversation that I once had with my late brother-in-law that taught me, there will be days when I need to give myself a break.  We were at the dinner table, and both of us were dealing with swallowing issues related to our health.  My issues were related to radiation damage from cancer treatments.  His issue was related to Lou Gehrig’s Disease.  The key difference, he was going to eventually pass away from his disease.  We both were having swallowing difficulties.  But it was as he saw me struggle, and then me just trying to “suck it up” and hide what I was going through, he made the following comment to me.  “Look, yes, I am going to die, and just because you may not die from yours, that does not make the issues you are going through any less real, or painful.  You need to cut yourself some slack.”

And so it goes with this post.  This past Sunday was Father’s Day.  For the first time in my life, I was not with my daughters on Father’s Day.  Let’s be clear, I was legally kept from being with my daughters as a result of my ongoing divorce process.  Now for those in my life who think that my current residence has anything to do with not being allowed to see my children, absolutely not.  If I were living next door to them right now, I would not have been able to be with them.  There are a couple of processes under way right now to correct this situation which would have allowed me to be with my daughters, but other than my estranged wife and I agreeing to let the processes work out, which has not happened, I have no choice but to wait for the two systems go their course.  Were my daughters sad they could not be with me?  Sure they were.  Was I sad?  I was devastated.

I assured my daughters this was the last year that I was going to let another holiday or event go by without being allowed to be with them.  And just as I mentioned the health reference, the situation with custody with my daughters seemed very similar to keep in perspective.

First, my daughters are adopted from a foreign land.  They never knew either parent.  They never got to know their foster parents, though I have information for them when they are older to pursue this knowledge if they so choose.  My daughters have suffered huge losses already in their lives, never to be replaced.

I have several friends and family members who have lost a child.  Every year, Father’s Day comes around, and all it does is remind of a permanent loss.  For some children, on holidays such as Father’s Day and Mother’s Day, the loss of a parent also is a solemn day, rather than a Hallmark and FTD windfall occasion.  Just last year, my father passed away from lung cancer.

That being said, my heart goes out to everyone who has suffered such permanent losses.  And yes, the time that I have lost with my daughters is only temporary, and cannot compare to the death of a loved one.  But that does not mean that the pain that my daughters and I feel is any less real, or any less expected.

So now I look forward.  With the last of the special holidays taken away from me over the past year, I have my sights set on the Christmas season.  I have to let the processes I mentioned earlier to work out, and unfortunately, as I explain to my daughters, “grown ups some times take a long time to decide on things.”  It is still a long way, but I have dealt with far worse, for longer periods of time.  And just like that, I can deal with this also.  All I want for Christmas is to hold my daughters again.

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