Wednesday, August 31, 2011


In the two years that Michael struggled with his tumor, I was part of an online community of caregivers whose loved one had a brain tumor. Most of these caregivers were spouses, yet some were parents. I kept in touch with a few of these people over the years, and followed many of their stories by way of Caring Bridge once I left the online group. Sadly, over the years all but one of those I have followed has lost their loved one.

Part of me was wanting to hold onto hope, to see that someone was actually going to survive this awful disease. Now not all of our loved ones had the same type of tumor, so to be fair, I'm sure some had a better outcome than Michael. Yet, of the those that I kept up with, just one has held on all these years later.

I'm sad to report that he, a young man, has now entered the hospice phase. As I read the updates posted by his wonderful mother, and I understand every word that she shares. I also empathize with her and her family, as this is a very intimate and painful period. You are savoring every moment, every breath that your loved one still has. This is coupled with complete exhaustion, both physically and emotionally.

Today as I was driving home I was thinking about this family, and wondering how they were managing. As my mind drifted a bit I began to sob heavily. It touched on a pain that I try my best not to succumb to these days. It's the pain of knowing that any moment could be their last, and wanting to hold onto each of them. I began picturing Michael in his hospital bed, and all the love and care he needed. I began to picture him in our own bed, sitting their doing his annoying Sudoku that he loved so much. I began thinking of him laying there next to me, with his eyes fixed on mine. I began to remember the feeling of holding him tightly in my arms as my body spooned his.

I sobbed, and I sobbed some more. I know that it doesn't help to get too lost in these old feelings, yet I suppose I must revisit them from time to time. I miss him so very much. I miss his beautiful smile, and the way he made me feel so loved. I miss his goofy flirtatious ways, and how I would laugh at his silly sexy moves. And I miss the look on his face when we would make love.

Yes, I know. These thoughts will only serve to bring more tears tonight, yet I can't help but go there. The difficulty for me is that this young man who is lying there in his own hospital bed, with all of his loving family caring for him, appears to be following the very same time line that Michael did. In two weeks it will the the second anniversary of Michael's death. It seems like a life time ago.

I sit here and take a deep. I know I was fortunate to have him, and yet I can't deny that I am not still angry that I had to lose him so quickly. I don't really know what the point of all this rambling is.

Just where I'm at I suppose.


  1. I love your ramblings, even when they bring me to tears. Especially the comment about Suduko - Elias loved that too . . .

    I was part of an online brain tumour forumn as well - I'm almost surprised that we didn't end up on the same one and find each other there first. Or, maybe we did and just didn't know it? I've kept in touch with one woman who's daughter just finished radiation not long ago. Things aren't looking great, but so far she is still here. I ventured back onto the site months back, hoping to see some familiar names with recent posts . . . there was only one I could find, but I also didn't spend long as it was too difficult to even look at that all too familiar page I once spent so much of my days on.

    Now who's rambling!? You were lucky to have him, as he was to have you. Love to you both,

  2. This post is about something all too familiar to me. As you probably know, the prognosis for NSCLC is pretty terrible, so my revisits to the couple of forums I belonged to have been sad and I don't even check them anymore as there is no one left that I knew. This week, I've been finding that I am very *aware* of the time even though I barely look at the calendar anymore. It is enough to see the black-eyed susans and the goldenrod, to know that it is about that date when Don became critically ill and went into ICU on Sspt. 1st to die on the 6th (three years ago). I was just recalling to a friend how, just a couple of days before Sept. 1st, I sat on the front porch puzzling over how I would build a wheelchair ramp up from our lane as there were two sets of steps to negotiate. The cancer in Don's spine had become so bad that he was reaching the point of being unable to walk. I hate to even admit this, and it is the first time I have ever written this down, but as I sat there figuring out how to build the ramp, I wondered if I should even buy the lumber as I was pretty sure Don would die before I got it finished - and believe me, I am a very good and quick carpenter. How could I have known how right I would be. Anyhow, this week, as I work on the old house, scraping paint off old stairs, and stripping wallpaper and plastering, I can't seem to help but think about those last few days three years ago. I remember how my mind was aleady drifting to a place where I knew the outcome and was just going through the motions - exhausted and sad at how everything - the struggle against the cancer - was coming to an end. It is still pretty hard to believe -even now. Don should be here working on this old house with me - beside a river in this valley of Nova Scotia where we had always planned to retire. Instead, it is just me and the dogs. I used to feel more anger, but that seems to have leached away. Now it is mainly the sadness that remains - sadness that Don did not get to be here. For myself, I guess that I have gotten used to being alone and just working away on things for whatever reason it is that I do all of this -sort of like one of those people who you hear about who sepnds the last 30 years of their life building a castle out of concrete and discarded pop bottles. I think I understand those people a lot better now.

  3. as you always are, you are in my thoughts and prayers. i know these intimate little journeys inward. they almost seem to be necessary for us to continue on. i wish you peace.

  4. dan - *. How could you not be in those thoughts and those memories.

    Bev - yes ma'am, those castles.

    All of us - they should be here, with us, beside us, and us beside them.

  5. Megan's right .... they should be here, dammit. I've gone from being so pissed at Jim this week, for being the dead one, for leaving me behind to deal with the crap that teenagers can cause. I should be the one who's dead, who's at peace .... leaving him here to deal with 6 kids and everything that entails. Six kids with a very dead father. And a very different mother.
    And then I'm not pissed at all, but just loving and missing him. And sobbing through it all. Even this far out.
    So ramble on, Dan. We all need to ramble. To keep ourselves from going truly insane. Besides, when we read each others' words, we don't see rambling .... because we view these words through a lens of love.
    And I love you.

  6. Hi! I am so very sorry for your loss. I found your site when I was reading another brain tumor blog. My mom was diagnosed with a stage IV glioblastoma in July of this year. Can you forward me some of the Caring Bridges stories? If not and it is too personal, I completely understand. I simply want to get a good understanding of what I should expect. Once again, I am so very sorry...