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I kind of knew that things would get tougher as my disease progressed.  I am expecting more pain (which I have) and lots of other physical issues to deal with depending on where it spreads and how fast.  But I guess it should not be a surprise that the emotional stuff would also get worse.

My PSA is higher than it has ever been and, while looking for new sites of metastases to explain this and the new pain, we discovered that my original site has started to grow – quite significantly.  I have to do something about it because, as my oncologist says, “It’ll start to cause all sorts of trouble.”  She thinks we should radiate again with a higher dose, but wants to take it to tumor board again (for the third time) to get some advice.  When I asked if she could radiate an area that has already been radiated (and in my case, HIFU’d as well), she said simply, “Uncharted territory”.  For some reason, that hit me harder than I would have imagined.  It’s thrown me into the deep end of uncertainty and tradeoffs.  Whether we radiate or explore surgery, I will be taking significant risks….. and there are really no safe decisions.  Surgery would be very serious and potentially dangerous, and repeat radiation could leave my sacrum very brittle right where it connects with my pelvic bone.

But that’s not all.  I am so frightened about this that I am even entertaining going back on hormone therapy, in spite of the severe side effects that this has caused in the past.

It’s uncharted and very dangerous territory.  I need to make some tough decisions.

Thankfully, I have a week in Jamaica to think about it.  Maybe I should just stay there rather than face this, but I know I can’t run away.  The Wolf is in full attack mode!

Posted by Doug

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A cancer diagnosis can be one of the worst things that can happen to someone.  Hearing the words, “You have cancer,” can be devastating and almost always life-changing.  But this is just the start of many bad times to come.  At every step of the journey, you have something new to deal with and, in many cases, an escalation in the seriousness of your situation.  You never get used to the constant stream of tests, doctor visits, phone calls, appointment changes, treatments, side effects, etc. but you do learn to “go with the flow” as you recognize that your world has changed and that this is what it is going to be like for awhile.  With each new test there are new surprises, but they don’t seem to be as bad as that first surprise because you now steel yourself for whatever may come – good news or bad.  And when it finally comes, the truth is, you feel a kind of relief because now you “know”.  With each new stage in your journey, you move down a path of healing, or a path of further tests/treatments, or maybe they even find something new to worry about.

Many of us become students of our disease (through reading books, the Internet, talking to others, etc.) so we know the range of possible results and “then whats” each time we have a test.  Once we have the results, then we move past the uncertainty of of the last test and move on to the uncertainty of whatever comes next.  Many cancer patients find that the uncertainty is, in many ways, worse than hearing bad results.  This is because you can’t do anything with “not knowing” except worry about it.  At least when you know, you can concentrate on doing whatever comes next or on making the next set of choices.  There are lots of periods of uncertainty and they can be very hard on you.  Those newly diagnosed with cancer need to be prepared for this and those around them need to know that just waiting can be as hard as hearing bad news.

I think of these periods as chapters in a book where the tension builds up until the climax and then you turn the page and concentrate on what’s happening next.  When I started Hormone Therapy last summer for my cancer (Advanced Prostate Cancer), I felt like I had started one of those new chapters and knew that there was a clock ticking down to the time when it would stop working.  That uncertainty was always nibbling away at my mind and, while I hoped that it would last a long time, I new that it could stop working at anytime.  I’ve just discovered that my PSA is rising again which usually indicates that the hormones have stopped working.  Now I face the uncertainty of what limited choices I have left to me and what that means in terms of life expectancy and quality of life.

Uncertainty seems to be the worst side effect of having cancer.  It’s wearing on me and on my family.  I still have hope, but that is perhaps the most uncertain thing of all.

Happy New Year!

Posted by Doug 

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Today I gave blood. Not for any altruistic reasons (I don’t think they would accept my blood any more) but in preparation for my 3 month, post-radiation PSA check. It’s been quite a wait and next week I get the results. If my PSA is unchanged or higher than before my treatments, then I guess they didn’t work and I went through it all for nothing. If it’s back to “undetectable” then the treatment worked and I could be cured or their still could be microscopic cancer cells elsewhere in my body that could flare up later. I won’t know until they do or don’t.

I have been coping with the wait by working hard…..keeping busy, knowing that my subconscious mind was chewing on the “what if’s”. It’s been okay, really. Most of the shock of recurrence and the fear of the possibilities assaulted my peace and self-confidence when I was re-diagnosed. I haven’t really accepted it, but I have learned to live with it (I think). I’ll know better how I have really handled it after my appointment next week. But after doing all that I could to learn my options and take action, there really isn’t anything else I can do. It becomes all about coping and adapting…. learning to live with cancer. At times I feel it has made me stronger and at times I wonder if I am strong enough.

Wish me luck.

Posted by Doug

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There’s something about the word CANCER. When we hear that someone has cancer (regardless of the type or the prognosis) we drop our shoulders, tilt our heads and go, “Ooooohhhhh.” When we hear that we have cancer, our heart stops and we become deer in the headlights, imagining all of the horrors that we will be faced with – sugery, radiation, chemotherapy, weakness……. death. A lot of this is just ignorance, because few people know much about the 200+ kinds of cancer, staging, etc., but some of it is just the fact that the word itself has become synonymous with disease and, yes, with death. I see this all the time in the way that people react to the fact of my cancer, in the way they talk about it. People say, “you’ll be fine,” but they don’t know; they just want to make you feel better – or maybe it makes them feel better. I try to explain, as simply as I can, what is going on with me so they can understand the context of my feelings. For the most part, people take it well, even if they don’t know what to say, and I feel better for the sharing. But we have a long way to go.

This blog strives to help people understand the emotional impact of cancer so that they can be supportive and give strength to their friends and loved ones with cancer. For cancer survivors and those with cancer, it can show that they are not alone and they can derive strength from others who have been in their shoes.

I believe that anyone faced with a life-threatening illness experiences many of the same emotional stresses but that over-reaching specter of cancer adds another dimension by enveloping everyone close to us with a shared fear. This is why knowledge and understanding are so important. The doctors can fight the physical disease but we ourselves must fight the emotional disease by being open about what we are feeling and by helping others understand.

Cancer is not always a death sentence. It can be if it isn’t treated, but more than half the people diagnosed and treated will survive, some with little or no residual effect (at least physically). Rob Buckman discusses this in his book, Cancer is a word, not a sentence, by clearly explaining the impacts and outcomes of the different cancers.  If we can better understand this and help others to understand, perhaps we can lessen the emotional stress and the pervasive feeling of gloom that prevents us from dealing with it in a more realistic way.

So read through all of the posts and comments on this site and visit the links we have posted, and follow the links on those sites.  Read the books that are recommended and lend them to your friends and family.  There are many of us out here who want to help.  Post your comments so we can all benefit from your experience and insight.

Let’s talk.

Posted by Doug

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A couple of weeks ago, a friend of my wife finally succumbed to cancer. She had lymphoma and, while everyone thought she had been doing well, she suddenly deteriorated and died. She was a few years younger than Dianne and I with a husband and children and she should have had many more years with them. But it was not to be. It was interesting how this affected us.

Dianne attended the visitation with several of the “girls” who had known this lady. She was sad at her passing, but it struck a much deeper cord because of her worry over my recurrence and what that could mean. It personalized it much more than her other friends realized and she came home under a dark cloud that held on for several days. I had thought of going with her that night, partly for support , but also as a sign of respect for the bravery of a fellow cancer patient, a short-term survivor but a survivor nonetheless. Dianne told me to stay home that night and I’m sorry to say that I am glad I did. Apparently, the family had chosen to have an open casket and the poor woman… well… she looked like she had died of cancer. It was an honorable thing for the family to do but it was harder for Dianne to see her that way because it vividly displayed the physical tole that cancer can have. And I’m sure that, in her mind’s eye, she could see me at some future date.

I’m glad I wasn’t there, and I’m sorry to say that. While I’m doing pretty well with my own situation, I think it would have brought back a lot of feelings that I have managed to get past. It might have scared me. As strong as I am, there is always fear and I don’t want to die before my time.

Rest in peace, Gail.

Posted by Doug

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