5/22/2002

Two years ago, I heard those words that I will never forget, "Megan, we think you have Leukemia".   Only hours after those words, our life was turned upside down and we were thrust into a world of which we had no comprehension, a world of sickness, chemotherapy, determination, hope, fear and realization .... and all to extremes.

It is truly amazing how we, those that are healthy, take our health for granted, how "blind" we can really be.  Not blindness out of any disregard for others, but more out of ignorance.  I was absolutely amazed, even while still trying to comprehend the emotions of "what happened?", a whole new world was shown to me.  Things that were once important, even stressful, were now miniscule in comparison.  Those things that I took for granted became very obvious to me, while those that I was focusing on, and trying not to take for granted, were shown to me to be quite secondary .... and a distant secondary at that.  The one thing that I took away from these past years, while Megan was still alive, was the determination, strength, character and acceptance of nearly all the patients I came into contact with.  In each of their individual struggles, regardless of the likelihood of long term survival, most had the "I don't have time not to be happy" mentality ..... it was truly awe inspiring, and it has change my life drastically.

Not being threatened with my mortality, I can't say I understand what any of you/they go through, I only am allowed to have insight as the closest caregiver, utlimately turned widow.  What I can say is that Megan chose to play a role in her struggle not just of that as a patient, but also a caregiver of sorts.  She realized very early on that those closest to her quickly tuned in, and felt, much of what she was feeling.  More importantly, while I know that she sometimes put on that happy face even in the depths of fear and sorrow, she was willing to feel exactly what she was at the time, but always had words and actions that eased all of us around her.  As I told her so many times, "I draw so much strength from your strength".  Even before her transplant process started, she made sure that I knew, in the event that she did not survive this disease, that she wanted me to be happy, that she wanted me to go on, date again, get remarried and find MacKenzie a good "mama".  She told me that she did not want her death, should it result, to take away from my love of life, and my ability to be a good and happy father to MacKenzie.  Those few short lines, now as a widow, are one of her greatest gifts to me.  While I still mourn and grieve the loss, I mourn for Megan not being able to see MacKenzie grow up, I grieve for MacKenzie not being able to know and remember her mother ... and yes, I grieve for myself that from all that I have learned through these past two years, I cannot share those lessons with Megan.  However, what a pity it would be if I were to forget those lessons now.

I think my message is clear.  As a caregiver, or as the one afflicted, you have a choice to make as to how you wish to react to this event in your life.  No one day will you experience the same emotions as the day(s) before it, but over the journey, you have the ability to characterize or define your position.  It took everything Megan had to tell me that she wanted me to go on, I know this.  By even saying it, she felt that in some small way that she was giving into the disease in her mind, but she wanted me to know ..... just in case.  While I didn't want to hear it at the time, I am thankful she had defined her illnes they she was able to give me that great gift.

As a suriving widow, there is no way not to have guilt, to not question certain procedures, or not to say "what if we had....?".  It is relatively easy to dismiss many of these questions by acknowledging that we did the best with the information that we had available to us at the time.  More troubling, I have found, are the internal wars that rage about the feelings and actions that I showed, or did not show as her battle progressed.  Such thoughts as "Did I emotionally disconnect when she needed me most?", "When I chose to be with MacKenzie to keep her life stable, should have I instead been at Megan's side?", and the biggest one "Did I do everything that she needed/wanted me to do?".  I don't think I, or my situation now, is unique by any means.  All widows have their own demons to fight and guilt to resolve.  Ultimately I know there is no going back, so I can only try to resolve those feelings now in a way that quiets my mind as I move forward and make a new life for myself and MacKenzie.

These lessons, too, were not learned in the weeks or months following Megan's diagnosis, it was a constant process of learning .... learning through making mistakes.  If you haven't read my testimonial on this site, I urge you to do so now.  Whether a caregiver, someone afflicted, or someone perfectly healthy, I think the message will be clear.  As an example to that message, I offer the following:

Soon after Megan's relapse, and subsequent remission, and at a time when it was perfectly "ok", I had set up for a balloon ride day.  This is a day where you get to the site at 6:30, have a cookout breakfast, set up the balloon, take a couple hour trip, come back down, have lunch, and then disassemble the balloon etc. etc.  It was the one thing that Megan always wanted to do.   During the week that I was planning the trip is when we found out that there was a transplant opportunity at Oregon Health Sciences University.  Because of the uncertaintly of everything, I made one of the biggest mistakes of my life. I told Megan that "perhaps now isn't the best time, that $350 could be better spent elsewhere."  At no time in my life have I ever been so wrong.  I knew she was disappointed yet she agreed with me and that is something that I will never be able to take back, or do over.  While it may seem small, the guilt I have from this one event is significant.  Tomorrow is NEVER promised.  Make the decisions of today with that in mind.

5/20/2002

Tonight I finally started MacKenzie's diary and chronology which I hope to give her on her 18th birthday, already I have delayed far too long in starting it.  I am only sharing the first entry online to mark the date and serve as a journal entry.

MacKenzie's Diary & Chronology
Started: May 20, 2002
By: Daddy

MacKenzie,

It has been far too long in coming that I sit here to write this, the first entry in your chronology ….. but better late than never I suppose.

It is the year 2002, and even as I write this now, I have no idea what the future holds for us. I can only hope that you and I are as close and as inseparable, 15 years from now (as I want to give this to you on your 18th birthday) as we are now. So much has changed in the past year, and this is our first year together alone, without your mom around. I think "what is it that you would want to know as you are reading this?" That said, I am still not sure, and can only guess based on what I would want to know if I were receiving this. So I will just start ……….

Your mom died on December 14th, 2001, of Leukemia that couldn't be controlled. When she died, gone was my focus in life, my goals, my inspiration ….. and much of my optimism. Now, some five months later, I realize that those things weren't gone for good, only masked while I continue the grieving and mourning process. So much of my grieving was done shortly after her diagnosis on May 22, 2001. Being a computer "nerd" of sorts, and with the Internet still growing as a research tool, there was a lot of information to sift through about her type of leukemia and what we could hope to expect …… also the chances of survival, which weren't good at all, 14%. I kept that information to myself, so that others would treat her as if she was going to live, as opposed to treating her like she was dying …… which in my heart I knew was going to be the result.

I have never met anyone as strong in spirit and character as your mother. From the long 40 hours of labor to bring you into the world, only to finally have to have a c-section, to her long and brave battle with her Leukemia, she was a fighter and had so much "presence" it was astounding. People were drawn to her through her battle and she touched every one of them, had good words for each, and never allowed the leukemia to define her existence. She was able to inspire and motivate people beyond even her realization, but that quiet strength and presence is also what made her so humble and impactful. Above all else, she loved you more than life itself, more than I have ever seen a mother love a child. Even going back to that painful memory of hearing the words "We think you have leukemia….", I remember her first action was to pick you up out of the stroller, hug you tightly and say with conviction "I will not let you grow up without a mama".

Ultimately, she was up against odds that would not allow her to come out on top, or as I needed to believe, that God had accepted her into his kingdom early for the amount of love and dedication to life that she showed in her 33 short years. I still do harbor a lot of anger towards a God that would take a mother from a child that she loved so much, but have to believe that there was a reason.  Even fighting as hard as she did the final months, she (we) decided to take the most radical and aggressive approach to find her cure because she didn't want you to lose your mama at an age where it would affect you more than it has ….. even in knowing that it would also mean that you probably won't have any true memories of her (which was incredibly tough on her, and I). You were with her only hours before she passed away and shared one of the most heart-wrenching and touching exchanges that I have ever seen, one that still haunts me, and inspires me, to this day, as I am sure it will for many days and years to come. Only hours after that, our lives changed forever ……….

4/15/2002

Here it is, the four month anniversary of Megan's passing, and I now feel I have processed enough, felt enough, to begin recording my thoughts and feelings about losing my wife.  I have never been one to keep a written journal, and I expect that this will only loosely fit that definition.  This process is much different and much of what I hope to accomplish here is to record those feelings and thoughts that I am experiencing in hopes that another individual facing similar feelings will be able to identify with them, and perhaps not feel so isolated and alone.  It is the last thing you want to hear that many others have experienced the same feelings of loss, isolation, anger, hopelessness, and etc., but that realization can help if you are willing to seek them out.  

I distinctly remember how it felt for the year and a half that Megan was afficted, and vividly remember all the details up to her passing, and beyond.  I remember so much about her strength and character and I hope to impress upon you, the caregivers or those afflicted, of how much she played a role in the process and helped me .... as much as we all tried to help her.  If not for her strength, determination, and acceptance of her illness, I would not be where I am today emotionally; as I have told many of you, this was her final gift to me, and I thank her daily for it.  So with any luck, I hope to reach not only those in a caregiving role, but those also that are facing the uncertainty of a serious illness, or those that have recently experienced the loss from a prolonged illness.  I would greatly appreciate any input, whether positive or negative, regarding anything you see here.  You can email me from the email link on the left of the main page (hopefully you have the menu frame on the left)..

Anyone that knows me also knows that I am particularly motivated and moved by music (listening and playing), it is one of my true passions.  So before I go much further, I want to share a song (6 mb) that I feel was seemingly written for me. If you want to hear it (will take a while to download depending on your connection speed), click on the title.  This song had, and still has, a very profound effect on me emotionally and the strange part was that I had never really stopped to read the words until a short while ago: 

Disappear

Why, tell me the reasons why
Try, still I don't understand
Will, I ever feel the same again
Blue sky, I'll meet you in the end
Free them, free the memories of you
Free me, and rest till I'm with you

A day like today
My whole world has been changed
Nothing you say
Will help me ease my pain

Turn, I'll turn this slowly round
Burn, burn to feel alive again
She, she'd want me to move on
See me, this place I still belong
Give chase, to find more than I have found
And face, this time now on my own

Days disappear
and my world keeps changing
I feel you hear
and it keeps me sane

So I'm moving on
I'll never forget
As you lay there and watched me
Accepting the end
I knew you were scared
You were strong I was trying
I gave you my hand, said its okay letting go time to leave here
And I'll carry on, the best that I can without you here beside me
Let him come take you home.....

by Dream Theater