So much has happened; don't really know where to start. I'll revert to my business mode of bullet points for the sake of brevity.
- Mid October thru mid November I spent in-patient at the NIH (National Institutes of Health), the first participant in a new immunotherapy clinical trial--a protocol for a specific genetic mutation from HPV related cancers. I fully intended to document the process here, because it's really quite fascinating and because I really believe that immunotherapy is the future of cancer treatment. But the reality of the experience was that I felt so crappy for so long that I couldn't even stand to look at a computer screen, let alone try to relay the experience in a positive light. Suffice to say that when I finally returned home and recovered, I literally felt like I had died and come back to life. That being said, the tough road is one I would gladly travel down again because it gave me HOPE! And although subsequent scans have determined that the wonderous new T cells within me weren't quite enough to cure me and won't save me from the fate of this disease, I have no regrets. I feel better than I have in a long time and because of that (my) cancer is not always front and center in my consciousness.
- My nephew and his wife lost their precious little boy during the holidays. Cancer robs another family of their loving circle; hopes and dreams die an agonizing death when a child dies. The grief that these young parents are dealing with is heartbreaking, and has rocked my faith in the grace of a heavenly entity.
- Days, weeks and months have gone by and I stand as a bystander watching my husband go from a robust male to a shadow of what he used to be. It's painful to watch and as much as I try to be an advocate, it's frustratingly fruitless. I have come to realize I still love him very much; I'm scared of what life will be like without him, and I wish that we had done more to be the perfect mates to each other earlier in our many years together.
My Dear Dee,
ReplyDeleteI am so sorry to not have been forthcoming with my comment to you on this most recent post. please know that I still care for you deeply, and that due to a long period of some of the worst grief I have endured over the nearly 2 years since Hugh died, I have found myself going silent, unable to not even post comments, but also developed a bewildering and painful inability to even read the blogs of those I have come to love, those to whom I feel so vitally connected to. I don't know the exact why of it, even after trying to ferret out the answer, even missing and longing to provide support and offer hope and my best wishes for what you and others have been suffering through. please don't think that I stopped caring, I just felt I needed to shied my bedraggled and lost and grieving self for a while, as I have tried so desperately to climb out of an awful abyss I simply could not navigate.
I am feeling a bit better now, perhaps arriving onto a shift that I hope with all my heart I can once again come back into the light of feeling again.
first I want to express how very sorry I am that your nephew and his wife have suffered the loss of their precious little boy. I cannot even imagine the pain and the sorrow at losing their darling son - the loss of a child - there are no words.
I was very glad to hear about your experience in the NIH immunotherapy trial; I was thrilled to hear that you are feeling better than you have in a very long time, and hope this will continue; I will hold out big hope for you that something else will be available and will add to your new vitality and you own sense of renewed HOPE!
I wish you and your husband much comfort and peace, the inspiration to forge an intimacy that only includes what really matters, with all the periphera on the sidelines falling away, and leaving you both with no regrets, just knowing you both are doing your best to love one another - it all comes down to that - love given and received even in the most difficult and darkest hours. may the power of compassion, of Grace, and of the tender mercies that you and he can exchange, with your hearts wide open and receptive to each moment of living in the now is what will render it possible for the miracle of Love to heal all past wounds.
I will, as always, hold you close to my heart,,,
with much love and many warm and gentle hugs,
Karen
So nice to hear from you Karen! And very sorry to hear that you were in the depths of ugh. I understand your withdrawal; often I want to do the same and cannot stand to read one more paragraph about cancer. It's like having two desserts after a big meal...you just can't take one more bite. I hope you're doing better and your bedraggled edges are being soothed by whatever works to soothe you. I suspect that is finding a way to help others through the darkness once again. I appreciate your words, your thoughts, your support and encouragement...always.
DeleteThank you, D.
You still have readers. :) I am a complete stranger but for whatever reason I stumbled on your blog months ago and you come to mind week to week and have been in my prayers, for whatever that's worth, prayer being what I do when I can't do anything to make a difference. Your situation sucks. I admire that you write about it. I was glad to check in and see a post today, to learn the immunotherapy has made you feel better.
ReplyDeleteI identify with your regrets about your relationship. I think no one loves anyone perfectly. In my experience closeness is a dance of coming near and drifting, or splitting, apart, and love is mostly seen in failure, in brokenness, we're all broken and fail but that doesn't diminish the road you two danced and are dancing together. Your journey has its own integrity and is unique, never to be repeated, so each moment is precious, even though it isn't perfect or what "could have been." I wish you a rich dance in the time you two have left. I'm so sorry you witness his decline. I'm very sorry. It really sucks. The nature of this kind of loss is to feel alone, and that's real. At the same time I wish you could feel in some way not alone...your experience, as awful as it is in many ways, and in its moments of beauty too, is part of the bigger human experience and by writing about it... you make that connection more solid. You enrich others.... I hope it brings you some peace and even joy.
Anon, thank you so much for your note. You have no idea how much they mean to me. So glad that my occasional posts hold some meaning to someone!
DeleteYour words on the dynamics of relationships are spot on. We all try, but in the end are we all left with guilt and regret because we could have done better? I hope not; time will tell I guess.
Thanks for reading, and for your encouraging comments.
~D.