Five years ago I received the cancer diagnosis, and I thought my life had ended there and then. How wrong I was! It gives me such pleasure to reflect on the last years and all that has happened; all I have learned.

The medical stuff is enormous. I've learned and put to use many ideas. Basically it boils down to this: If you don't take care of yourself, no one else will do it satisfactorily. Even though I respect and like my medical team, they perform better when I am informed and engaged. I've been fortunate that those who have treated me agree.

Clinical trials are my friends, possibly my salvation. I really believe that if I had just followed standard protocol, I wouldn't be doing as well today as I am.

And I AM doing well. Life is almost normal. The side effects of my current treatment are manageable. Through all the last few years we have been able to travel, enjoying numerous adventures. The real impositions are fatigue and remembering to take meds on time. I can live with that.

Oddly enough, cancer has a gift to give. That is the gift of heightened appreciation for every day alive. I savor our marriage, our children, our beautiful home, and dear, dear friendships. I'm not sure I'd recognize those gifts so well if I hadn't received the "death threat" of cancer.

The point of this blog is to say I'm looking forward. I've made it five years and have every indication that there's at least five more coming. I am not a pathetic cancer patient, but rather someone LIVING with a chronic disease. Pffft! I don't even think about it (obsess about it) too much.

Let's dance!

Round and round and round we go

Back into treatment soon. We've tried every hormone blocker available, and my CA125 continues to rise. At first it crept up slowly, but in the last two months it doubled. Time for action.

And I'm upset about it, even though it's been coming on for a year. These are the things that trouble me:

a. The likely treatment is carbo/taxol again. It's nasty stuff, takes all my hair, and leaves me feeling trashed for all of the summer.

b. There are MEK inhibitor trials coming up, but they just don't seem to be getting launched soon enough for me.

c. I have to do all the research to find things that might work. I want a guiding hand, but the docs aren't being very helpful. I understand that they feel safer advocating for the "known" therapy and its documented results, but mine is a bit different than other Ovarian cancers and could be helped by different (and kinder) therapies, maybe. If I want to take the risk, I have to do the research, delving into information that I don't completely understand.

d. We have fun trips, weddings, family obligations to attend to this summer. There's only a slim chance I'll be able to do anything, and meanwhile, we can't make any plans.    ARGH! I'm a planner.

e. I'm scared.

f. I hate that my loved ones are distressed because of me. I hate that I cry at the drop of a hat.

Thanks for all your support, everybody. I'm determined to live each day positively. Maybe by venting here I can put the negativity behind me and charge on.

I'll charge on.

Living large in the woods!

A year already

It's nearly time to return to West Virginia. A year has passed and it's been a rewarding one. Living with Za for a year has been delightful beyond words. I regret that we cannot be physically as close to Gabe and Robin. Thank goodness for Skype.

Another blessing this year has been the reinforcement of our friendship with David and Barb. We have had some wonderful times with them - always comfortable and easy. It's impossible to think that the easy access we've had to them is about to be withdrawn.

More wonderful friends include our neighbors here in Keene, Jaime and Bonnie. How can it be that we became immediately close to them? I just have to believe in some kind of divine guidance that led us to share a house together. I can totally see them fitting in to the farm community. I want them to visit soon!

As for my health, well, it seems to be pretty much the same. That's a good thing. I suspect that the cancer is there, probably growing slowly. But I'd just as soon believe that it's gone, maybe permanently. The trouble is, I don't feel like it's gone. There's pain and fatigue that won't completely disappear. My CA125 is slightly elevated...still well within normal range, but perhaps creeping upward. My oncologist at Dana Farber is amazing. I will miss her and the trust I put in her. A clinical trial she had me sign on with tested tumor samples and discovered a mutation that could lead to future treatment options. Keeping my fingers crossed in so many ways.

And finally there's this Spring in New England. It is slow to arrive, so that each new thing blooming gets noticed. Soon the fruit trees are going to all be exploding with blossom, and it will be marvelous to see. There's tulips, daffodils, hyacinths, all popping up in the yards nearby.

Tomorrow we climb Mt. Monadnock. I wonder if I can do it?

Postscript:  We did go all the way to the top. 3 days later my thighs still hurt, but....it was worth it.

Home and then Home Again

We just returned from a lovely two-week visit to WV for the Thanksgiving holiday. Returning to our own house on the ridgetop was simpler than I'd thought it would be, and not as poignant. The house in New Hampshire also feels like home. I wonder just how strong my allegiances are. We probably hold ourselves a little bit in reserve, knowing that life can deal you a change at any moment, completely disrupting routines and associations. Some may see this as pessimistic. I assure myself that it is realism or maybe flexibility. I don't want to be shattered by unforeseen catastrophe (cancer, house fires, hurricanes, you get the picture). Neither do I want to be constantly and anxiously looking over my shoulder. How to face the future is a big topic on the Ovarian Cancer discussion group with whom I participate. I think all of us would prefer to live in the moment...Not too many succeed. Still, I know I'm fortunate to be able to enjoy so many things. Willie G and I have great explorations; living with Za has been both educational and joyful; visiting Gabe, Robin, and Neva is a privilege, and the West Virginia community feels like a blanket of truth and compassion that I can wrap around myself.
Merry Christmas everyone and a hopeful New Year.

No news is good news

Well, I realized today that I need to correct the last post. I wasn't as stoic as I thought. I only went about 10 weeks between check ups. But the good news today is that there are no changes in my condition, and so I won't go back to Dana Farber until the middle of January. Have I mentioned how wonderful my doctor there is? I just really like her a lot. She's kind, funny, patient, compassionate, and smart. Now, back to practicing my Tai Chi moves.....

Cancerversary

I'm a year out from my first NED (No Evidence of new Disease) report. This fall I have gone a total of four months without testing or seeing the doctor. That's the longest ever, and it's been fine. Now as I approach my blood test tomorrow I notice I'm getting a little angsty, but I've learned to believe that I (we) will handle whatever the results bring up. I don't feel really different, so I expect nothing has changed.

I think I should apologize to everyone who got news of my diagnosis from Facebook. What was I thinking to announce it like that? I just didn't know the seriousness of this particular disease, and I was too shaken (and later drunk/drugged) to phone each loved one individually.

I've just found a Tai Chi class to join and hope that will help me deal with constant joint pain.

Fun news: Oregon for the entire month of September was terrific. Neva knows who Grandma and Grandpa G are for sure.

It's apple time here in the northeast. We went to a U-pick orchard and brought home a peck of several apple varieties and made a crockpot of apple butter. That was so easy and delicious that we went to an abandoned golden delicious tree today and picked up a peck of groundfalls and are now brewing our second batch of apple butter. We'll be giving some of it away......to those lucky few who want some.

Please write your congressman when you can and demand that the legislature look immediately into causes and prevention of drug shortages. It's a problem that can potentially devastate each of us: shortages in chemo drugs, anesthesias, and antibiotics. Yikes!

June, 2011

What a month it's been; and it's not officially over yet. But we have moved to Keene, been to Dana Farber, gotten a NED confirmation (via a new CT scan) and life is pretty good. I think I flipped out about 4 times waiting for the medical stuff to clear, but now I'm feeling lighter than air. We have plans to make and places to discover. And even though I don't expect to stay NED forever (but I wouldn't turn it down) I'm not spending much time thinking about cancer. When I remember where we were emotionally and physically last summer, this feels like a fairy tale. I'll take it, thank you very much.

Now, somebody please tell me what to do with this crazy, curly hair!