Thursday, February 26, 2009

I'm Freaked Out

I'm going to be open here. I'm always encouraging swan to use our Blog(s) as a vehicle to do the sharing she might do if we had a circle of real time friends with whom she might confide. I am going to do the same thing. I'm afraid. I'm really scared about this surgery.

When we got the word Monday that we were both approved by our health insurance company for the procedure, and we were actually scheduled exactly four weeks to the day from that date, t seemed to feel excited and glad. I felt abject panic. I didn't sleep a lot that night or the next.

Now I know in my head that this is a very good move. I know the many huge health improvements that will result. I know how wonderful it will be to lose all this weight, to take the load off my severely arthritic knees, my hips, and my seriously deteriorated spine. I know I hate how I look and feel and that will improve in huge ways. I know we will be able to get out and about way more than we do now. Most importantly I know this means that I will have many more years with my two spice and that quite frankly the number of those years I will have, without this surgery are likely to be seriously numbered. So right up front I want to assert that I know this is absolutely necessary, and a good thing, otherwise I/we wouldn't be doing it. We have the best surgeon in the area and will be supported by an excellent and experienced multi disciplinary (if only they knew how funny that sounds within the context of our lives:)team. I want to express all this so that you know that I am doing this all very strategically, intentionally, and consensually.

All that having been said, I am absolutely frightened. Three weeks from Monday they are going to cut out 90% of my stomach and reconnect what is left to my g. i. tract so that it will be inefficient at absorbing nutrients. Two hours later they are going to do the same thing to t. She has had such huge health problems and so many previous abdominal surgeries that they may have to modify her surgery to a gastric sleeve and not the same bypass I'll have. These surgeries have a 1% mortality rate. Our surgeon has done literally several hundred of these with a much better rate than this, but people do die from this. t has had so much trouble I fear losing her through this. Of course too, I worry about me too. Much more than this though I fear the future without being able to eat normally. Last night I had a committee meeting in a Panera. I ate more baguette bread than usual. I know that when we meet again I will already be in a liquid protein diet and will not be able to eat. I know too that I have been told that in all likelihood bread will disagree with me. I won't be able to eat bread the rest of my life (except small amounts of toast.) There will be no more Thanksgiving dinners as we have known them (well there can be...I just won't be able to eat them.) In a week or so when we enter our liquid protein diet there will be no alcohol. There will be none for at least 6 months to a year after the surgery, and then if I can tolerate it at all it will be in only minuscule amounts. I love good wine with dinner. I won't be able to drink wine with my food. Hell, I won't be able to drink anything, alcoholic or not, for 15 minutes before, during, or 15 minutes after I eat. How do you eat without any beverage? I could go on and on about the seeming incomprehensible sacrifices to lifestyle this will entail and which leave me feeling grief ridden and just plain terrorized.

Then there is the timing. My 90 year old father is not well. He has just started dialysis. We are frequently called upon to support him. We will be unable to do that for a month or so. My agency's development director has just moved to a wonderful new job opportunity and we need to deal with replacing him. We have just been notified that our longest term funder is going to end their funding relationship with us after 50 years next January. And, of course, like everyone else our investment reserve has lost 50% of its value over the last year. This is a really not good time for the agency's Executive Director to be out of action for a few weeks.

Now let me say again. I need this to survive. I am an extremely tough and determined man. Once this is done I will find a way to make this work and to excel at having a positive outcome for me and will support t to have the best outcome possible for her life. I know that through all this we will be loved and supported by swan. But I am scared, and likely being a melodramatic wimp, but I am truly wigged out. I am managing to function. Thank god for my work that forces me to function because so many depend on me. Thank god for the love and support of my two who know how I feel and who are doing so much to support me as well all work to support each other. All three of us have our fear and catastrophic fantasies as we approach this. Every other time we have had a surgery it has been one of us and the other two have waited together for it to be over and to learn the outcome. I am scared for poor sue who will have to wait alone while the two of us are operated on. I am scared for her too, having to care for both of us after we get home.

What if they should release one of us to come home before the other? I am likely making myself nuts, but I don't know how to stop.

I have a Board meeting tonight and the agency has crises and I have to be leader. Thank god that will fill my mind and make diverting any energy to this impossible once I begin work through this evening.

OK I have this out there. I am not being very brave about this. I want to cry.

Tom

Go confidently in the direction of your dreams. Live the life you've imagined.

P. S. I'm moving in that direction, but I can't say that it is necessarily confidently.

9 comments:

Amber said...

You are doing the right thing and everything will turn out as it should. It's okay to be scared, who wouldn't be? But you will all come through this fine in the end, wait and see.

My husband needs the same surgery, his doctor says so every time he sees him, but he refuses to do it. Fear. I will be reading you with great interest as you journey through this part of your lives, as I have already been reading another blogger who had the surgery 6 months ago. She's doing fantastically well and is so glad she had the surgery. But before the surgery she had all the same fears you do; now those fears are nothing in the face of her new healthier life and body which she is enjoying so very much.

Not a day goes by that she isn't happy about doing it.

You will be in the same place and this summer will be marvelous for you all. :)

swan said...

My Dearest Master --
Thank You for writing this here. Putting it out where we can see it will make it easier for us all to cope with our fears and worries -- as well as our hopes. I'm not going to tell You anything here, or at home for that matter, that You don't already know, but I think saying these things is going to be part of this process, so here goes.

Of course You are afraid. You are afraid for T and for me and for Yourself. It is completely reasonable to be fearful. This is a serious choice You are making and there are surely risks. It is almost cliche' but courage is not about never being afraid, it is about going forward in spite of fears and doubts. You have done that before and I am confident that Your courage and resolve will carry us all through this. We have studied this, we have chosen a very qualified and experienced surgeon, we have completed all the required preliminaries -- everything that can be done to manage the risks, we have done.

I know, too, that You have huge regret at the things that You will need to give up as part of this lifestyle change. I know that these are real sacrifices of things that You enjoy and that You are looking forward with great sorrow to long years without the pleasures that will be impossible to indulge following this surgery. I am very much afraid that, even as I look forward to regaining You in full health and vigor, You are perceiving that as a "slap" that adds to Your grief and sense of loss. I cannot help my sense of anticipation at the gains that are promised with this surgery, but I am trying to not burden You with my view of this... I am simply trying to feel my way through loving and supporting You in all of this.

Sir, it is very hard to look forward past the huge hurdle of this surgery and the subsequent recovery, and see what might be positive on the other side. All the stories of others who have successfully navigated this passage are interesting, but not "Your" story. We couldn't imagine the other side of our terror before Your knee replacement, either, and You came through that VERY major surgery with awesome determination. This will be difficult too, but You and T will be fine. I believe that with all my heart.

I am glad to see Your fear and grief laid plain. It make it possible for us to talk about it openly, and it makes it possible for our friends to reach out and support You and all of us.

Your fears are not the only ones. You know that. In the days ahead, we will all deal with (and I hope speak to) the fears we harbor. You have, once again, paved the way for our family.

I love You.
Yours always and all ways.
swan

T said...

Aww dang...Tom I know that you are concerned about each and every thing but we are all going to be fine. We have the best surgeon in town. And just think how GEORGEOUS we are going to be in about 9-12 months!

They say that our tastes will change. Maybe the reduction of food and changes in your drinking will be like me....you won't even care about alcohol anymore....not likely, but it could happen.

And we will be more active and able to do more with each other outside of the home. Long walks and maybe long sleeps ALL together! Less body = more room!!!

Wink! Mores & Mores

T

M:e said...

Tom, I have nothing but the deepest respect for you for sharing all this out here. Not brave? A melodramtic wimp? For me, nothing could have been braver than to voice your fears and worries. If anyone underestimated before what a huge thing you and T are doing, they can be left in no doubt of that now. We cannot walk your path, but we can be here to listen, cheer you on and support you. Hopefully, to some degree, that will help.

Even the bravest warrior sometimes needs a soft place to lay his head and let it all go. I know you have that. We will keep you all in our thoughts and prayers, and hope that gives you comfort.

love and hugs xxx

Tiggs said...

Oh, Tom this posting shows what I've felt from the first... your absolute love and trust and faith in those who love you and also in the positivity of life itself. You are worried and nervous, because that is absolutely normal, yet you are managing to take it all in stride and to consider all the options and variables and different angles at the same time.

You're gonna be great! All of you!

selkie said...

NOT brave???? You, T and swan are INCREDIBLY brave. Only a fool wouldn't fear; but the warrior goes ahead anyways. as you guys are doing.

I hadn't thought it through but apart from the risks with the surgery iteslf, I hadn't thought much about the ripple effect ... if it is any comfort, my sister had a stomach band put on; She still enjoys food, but spends FAR more time on presentation and has very small portions - she is an incredible cook and finds that she is satisfied with FAR less than she would ever have thought.

she has learned to savour her food, to relish each flavour and each mixture... to take in the whole dining experience.

|I know that when I lost a whole bunch of weight in a rather radical diet, after a certain point i just lost interest in food; it really became just a source of nourishment.

Tangerine Tease said...

Oh Tom...this is a huge thing...Really. Your life is about to drastically change. Of course, knowing these fears are all very normal doesn't make it easier to face.

I have a story of a woman in her 70s who had this same surgery, and she is doing fantastically well. Her stomach has expanded
(it's been a two or three years), and she does eat small normal meals. She lost over 100 pounds, and looks so different! More importantly, she feels much better...

I think it was lonely for her as she did not have a partner during the recovery, and her daughter was only able to stay a week. You have a phenomenal support team. (But you know that already...)

I am so glad you are doing this blog together. I think it will be a good place to sort out your feelings and to connect with those who support and love your family out here in the etchers...

Raheretic said...

Reading over these comments, it is difficult to say which of them touchs me more. I appreciateeach one of your responses so much. You really annot know how much they mean to me right now. Thank you for being such good friends and of course, swan and t, I love you so much and what you said to me here.

We got through yesterday and last night's board meeting went remarkably well considering. My Board has been informed about the upcoming surgery now and they know I'll be less that functional for two or three weeks the end of this month and the beginning of April.

Tom

Go cofidently in the direction of your dreams. Live the life you've imagined.

jojo said...

"I find myself feeling that it would be hugely irrational if you were not feeling as you are. Your feelings seem so appropriate for what you are living through..."

Just a reminder of words you said to me as I was about to undergo my surgery:)

jojo