December 1, 2011

From Type "A" to Type "Z"

This is about loss. About being dragged down from someone you were, to someone you never thought you could be.

There is little doubt that I have been a Type A person for most of my life. I always have to be doing something and I am driven by perfectionism. But since I developed cancer, especially since it metastasized, I have steadily lost capabilities such that I now classify myself as Type Z. The Z is for Zombie. Zombies are pretty popular and they provide a good model for describing how I feel these days (Dianne tells me I don't look like a Zombie, but I'm referring to how I feel). For I have lost so much and am on track to lose so much more. Too much. At times, just thinking about it drags me into a deep depression. These are the times I really feel sorry for myself. It's when I cry.

So what have I lost? Well, quite a lot.

- I have lost the ability to work, something which has defined me for most of my life.
- I cannot make the kind of money it did when I was working. There was always a commission on it's way to help with a big purchase, repair, vacation or event. No more. I'm just scraping by.
- I have lost the pride I wore like a mantle for doing a good job and for being recognized for it. The respect of my peers.
- I don't see the many people I met through work. They were not necessarily best friends, but they were my "network" who we're always up for a beer or a coffee.
- I can't travel like I used to. I hated the extent of traveling I had to do for my job from time to time, but I enjoyed being a jet-setting business man and meeting new people in other countries.
- I forget things all the time....words, names, what day it is.
- I can't drink any alcohol because of the medication I'm on. I loved good scotch, cognac, dark beers.
- I don't enjoy food like I used to and can't eat as much.
- I can't kayak like I used to and miss my annual summer kayaking/camping trips with my buddies.
- I can't participate in any sports and I can't even work out or jog, so my body has lost all it's muscle tone (well a lot, anyway).
- I have only a few really productive hours in the day because I sleep so much and am so drowsy the rest of the time (from the cancer and my meds).
- I don't play my guitar any more.
- I have had to cut back my active involvement in health care advocacy.
- I live with varying degrees of pain every day. And I'm not in love with the meds I have to take to make it bearable.
- I have a great deal of difficulty with intimacy which is hard on Dianne and I.
- Above all, I am losing a future with my family and friends, and especially with Dianne.

Wow! Sounds pretty desolate, doesn't it? Well, it sure feels like that some days! But to be fair, I still have a lot to be thankful for and I don't want to minimize that. Yes, maybe I'm whining, but I'm being honest about it because, after all, that is what this blog is all about. I have to be open and honest with you. You need to know what I feel..... what others in my situation feel.

A light in the darkness!!!!!!!!! Recently, Dianne and I connected with the Dorothy Ley Hospice, which has been like a breath of fresh air to us. In addition to the support of our family and friends, we now have the support of a wonderful team of volunteers and professionals and the occasional companionship of others who are going through what we are going through. Does that move me back up the alphabet? Mmmmmmmmm.....nah. But it sure helps to concentrate on the good things in life; to realize that, in spite of what's happening, life is good!

And I can still write!!

21 comments:

Mike said...

Recently my dad, around your age, had a prostate cancer scare. His PSA levels were up and his biopsy results showed "abnormal cells".

My mom noticed that since giving my dad antibiotics after the biopsy, he was no longer getting up in the night to use the bathroom. Since, his PSA levels have dropped to half of what they were, and the doctors are thinking it's just an infection of the prostate.

I'm sure you can imagine the relief my family and I had.

I truly wish it was that simple with you too, but the fact is that cancer is real and it happens to real people.

Thank you for sharing your thoughts. I'm sure that by you doing this you'll open up more understanding on this terrible disease and perhaps a cure will come that much faster.

I have a website to show you, it's called fold.it The premise is a game that has people folding proteins. Why this? Proteins are very important in biology, and scientists were looking for a particular protein configuration that would interrupt the RNA of the HIV virus. Linked Cray supercomputers working for a decade couldn't find this protein fold. The game available at this website, once available to the public, solved this protein puzzle in 10 days. They will be using it to work on the flu, other virus's, and cancer. The website is fold.it. I encourage you to check it out and maybe mention it on your blog, because maybe this is where the cure for cancer is coming from.

We can always hope.

Best regards,

Mike

Joan H said...

Hi Doug.

I am so pleased for you to hook up with your hospice. You've made the most difficult decision (stopping treatment) and learning to live with the changes. Now the whole family has support medically, spiritually and emotionally from an amazing and knowledgeable team.

I very much relate to all your posts as caregiver to my husband with terminal lung cancer. The little losses, or little deaths I call them, of what can no longer be are very normal in my experience. And yes, at the same time the change in recognition for gratitude is big!

Write on! Your words bring meaning to your and your family's experience and a help to others in the world. I know that our choices, and through the support of hospice, we have had far better quality of life - and longer too - than if my husband had continued treatment.

As I write through these days (which have turned into months) publicly from the caregiver perspective, we have reached far more friends and family than ever imagined, bringing an opportunity for last words, laughs, memories, healing and conscious living.

I'm looking forward to many more of your posts. With my best wishes, ~Joan

Dianne Gosling said...

Thank you Mike and Joan for taking the time to read, reflect and respond to Doug. This is his wife Dianne writing.

Joan I agree with you 100% about your comments re "losses or little deaths". Along this journey we are going on I mourn the losses. Unless you are unfortunate enough to be on this journey I don't think that friends or family really know the loss we as wives feel. Each of our family members feels their own loss and losses as the keep piling up. I lost my sister to cancer and I thought I understood what my brother-in-law was feeling...in retrospect, I now know I didn't really have a clue. We feel the loss of the good health our loved one once had, the loss of being able to do whatever we both want i.e. hiking, kayaking...etc. due the the fact that our loved one no longer has the energy to do that, even though they dream of it and would love to do it. We mourn the loss of intimacy, having dreams of "later" in life retiring together, enjoying grand-children and more Christmas celebrations, any of those special occasion family or friend get-togethers. We mourn not having that one person who is interested in everything and anything we have to say or do, listen to and advise us. We mourn the empty bed we will have one day.
On and on and on.

It is even harder for our loved one that has to find a way to live with the idea of feeling all those losses and more also.

I want every day Doug and I and our family and friends have be a "memory" of some special kind that we all can hold onto and remember. We must remember to LIVE now and mourn later. I know when it is late at night and I am alone I feel so sad but I remind myself that I still have Doug with me now and I must LIVE, LOVE, LAUGH...corny as it sounds.

My heart and prayers are with you and your husband and family. Please write again.

Anonymous said...

Hi Doug, I'm very sad to hear of your cancer. My husband and I went to high school when you did so we remember you as that young healthy guy. I think this a good thing for you and your family that you are talking about what you're feeling. My husband's brother has also had prostate cancer for about 10 years and is still getting treatments of some kind or another but if the are helping or not I don't really know. He has never talked about what he was going through and of course no one ever knew what to say to him so no one ever asked. It would have been good for all the brothers to understand what he went through since it is quite heretary. What would you suggest for the brothers to do that might be helpful for him and them.

Doug said...

To Anonymous.
Ahhhhh. Good old DHS (or DSS deptending on the year). Lots of great memories.
Thank you for your comment.
It is not uncommon for men with Prostate Cancer to suffer in silence. In general, men just don't like to talk about illness (I'm unusual in that respect) but there may be other reasons for keeping quiet. I think it makes it harder on everyone if its hidden. At the very least, brothers should feel free to confide so they can help each other. If you could get even one of the brothers to bring up the subject, that would be a good start. There is a hereditary component to prostate cancer. Currenttly, there is about a 1 in 6 chance for a man to develop it in their lifetime (slightly worse than breast cancer in women), When someone else in the family has it, it immediately doubles the probability to 1 in 3 for the other male members of the family. If more than one gets it, the odds get even worse.
At the risk of appearing self-serving, I would recommend that you get a copy of my book, The Wolf at my Door, which I wrote to educate men and their families on what it is like to have cancer, particularly focusing on the emotional impact on everybody. Therre was little "out there" delaing with it from this perspective so I decided to document my own story. As you can tell from my writing, I don't hesitate to be very open and brutally honest and I have received tremendous feedback on how much it has helped others. You can order the book on-line from Amazon or Chapters. Believe me, I didn't write the book to become rich. Far from it! I would send you a copy but I'm running low myself.
As an alternative, you could just do a Google search to find some good websites, although you will find that they deal mostly wioth the physical aspects of the disease.
I hope this helps. I wish your brother-in-law the best of luck. Maybe you just have to ask him about it. Many people don't know how to ask or what to say to someone with cancer. You may be surprised if you ask directly with love and concern.
Best regards,
Doug

Anonymous said...

Doug, thankyou for your answering me yesterday.I will be reading your book I'm sure it will be very helpful to our family. I will be following your journey as I admire you're honesty and obvious love and respect for your family. Your wife is amazing. Hope you find something positive in your day today and everyday. I hope you are blessed with a wonderful Christmas memory. My prayers and thoughts will be with you.

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