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!

Moving

We're moving in a week, and after many days of sorting and packing busily, I just got a bit anxious. This home has been my refuge this past year and I'm too attached to it. Breaking out to a new place, new habits, new people is daunting.

Of course, I still feel all the excitement of an adventure. This move is what I want to do, especially since we can always come back here if things don't work out.

I should be a pro at moving. We moved at least every 3 years or sooner when I was a kid. Back then I didn't have any place to call home...it was just the current house provided to my family by the military.

This should be better. Yeah. New Hampshire (or Vermont) watch out. The coons have been let out!

Morbid thoughts

The title here is a heads-up to the followers of this blog. If reading a rant about dying isn't your cup of tea, exit now.
    I just returned from a two and a half week visit to Gabe, Robin, and Neva Jean. The trip involved about 8 flights in all and during these flights I had some compelling thoughts. First of all, it seemed so alien to NOT have Willie G's shoulder next to me. I don't know why, but the absence of his shoulder  was what I noticed most. That's probably symbolic, you know, the strong shoulder to lean on. I know I drop all my burdens on him.
     And being with Gabe-Robin-Neva made me wish so hard to be around many more years to see how things develop with them and to be a part of their lives more. We'll be living with Za for the next year, and I'm really grateful that I get another year to live together. I want to be healthy during that time too. And I really want to have lots of new experiences to share with Willie G. But my markers went up just a tiny shade this past month. It probably means NOTHING, but still....you can't help but wonder, "Is this the beginning of a recurrence?" Ovarian cancer recurs in about 80% of all cases, so the thought (fear) is always there.
     Fear is what I battle with the most. I ask myself what exactly I'm afraid of, and there are a number of things probably, but most likely I am afraid of dying. There. I've said it. I hate that I'm such a chicken-shit, but I cannot bear to think about watching my loved ones be saddened and burdened by my care as I become increasingly unable to care for myself. Cancer is a shitty way to go. I don't want to live forever, but I'd like to choose how I depart, and it seems that a choice is just not possible. I wonder, too, am I afraid that nothing of me will endure after I'm gone? Lately I hear daily news stories of people dying - Japan tsunami, bin Laden's compound - and a voice inside says, "See there? People die every day. You won't (can't) be any different."
     So while I was on an airplane this week that had braking problems and had to return to Detroit instead of landing in Charleston, a part of me thought, "Now THIS would be an ok way to go. Crash! and it's all over." I totally couldn't emphasize with the young woman crying in the seat beside me. She was afraid the plane wouldn't land successfully.
     I'm absolutely NOT going to have another blood test until I meet a new doctor in Boston in July. I'm going to force myself to assume that everything's fine. Even if this is the start of a recurrence, nothing would be done until there was harder evidence. I'm trying to get connected with Dana Farber Cancer Institute in Boston, a very progressive, research-driven clinic. Most of the gyn/onc there are women, which is refreshing, and they are at the top of their fields. Getting the insurance on board and all my records forwarded to them is my current challenge. It's good to have something to work on.
     So I think I'll try to get a copy of Stephen Hawking's The Grand Design  and perhaps, come better to grips with my brief stay on the planet. I'd be glad to hear anyone's theories on death and dying apart from the Christian-We-are-all-saved premise. I think I've heard all of that theory necessary to make up my mind that it just doesn't ring true to me.
     This past winter, during one of our many snowfalls, it occurred to me that each snowflake could be a departed soul. You know, how each one is unique? And that comforted me some. I'd like to be a beautiful snowflake. And of course, I'd fall right here on our ridge top.
     I DO get the "Live each day as if it's your last." and I'm trying to do just that.

Perspective

I have a cold - probably a cold plus seasonal allergy. Yesterday I could hardly function. My eyes and nose were STREAMING...both at the same time. Willie G commented that I looked pretty awful too. But then I considered how I was feeling and decided that it was not one/tenth as bad as I felt on the worst chemo days. The thought really cheered me up. Then I decided to take some allergy meds and things have improved mightily.

We're planning a move to New Hampshire and trips to Oregon. I feel confident that I can do it all. My monthly markers remain stable, and they have even dropped a bit since the fall. Most importantly, I've passed the six month mark since my last chemo without a recurrence. I hope I can say that I've made it a year next September. The longer I can go without the cancer returning, the more treatment choices I have.

Watching the markers

I don't know why, but each month my tumor marker numbers have dropped. It's a good thing. Could the curcumin be responsible? I don't know, but I feel like celebrating each time I get good lab results. and as an added bonus, the temperatures here have been so pleasant that we can be outside without a jacket. When I was first diagnosed I really didn't think to be alive after three months, and here I am, enjoying another spring. Low on expectations, high on gratitude. Yep, that's me.

Things I Took for Granted

Ran around Charleston today completing lots of errands and at some point I stopped to think about how nice it is to:

1. Walk around with normal-looking hair, eyelashes, etc. and no one looks twice at me, and certainly doesn't give me looks of pity.

2. Push a loaded grocery cart all around the supermarket without help.

3. Run to catch up with Willie G.

4. Eat anything and everything I want.

5. Enjoy my new "perky" hairdo and hair color. I really do like it.

6. Make plans for the future without regard to a chemo schedule.

So, if I'd never had the big surgery and 4 months of chemotherapy, I'd never be appreciating these little things. Now I know.

Another month clear

Drove through snow to have my labs done and meet with the oncologist. Everything continues to be stable. In fact, my tumor markers have dropped a bit. So, the doctor wanted to know what I was comfortable with in regard to how often to test. It was interesting that he brought up this topic since my first question for him was, "What if we want to travel and skip a month of labs?" It seems it's largely up to me to determine the pace of surveillance as well as when to resume treatment if the markers rise. So, it's back to the internet for me to continue stalking all the sites with Ovarian cancer info, clinical trials, discussion boards, etc. I should just go ahead and get the dang medical degree...except those who are expert in this disease don't seem to have many definite answers either!
Pfffft! Time for a beer and a couple of hours with a good novel.

Over the holidays

It's coming up time for the next labs and doctor visit. Sometimes I feel "lah-di-dah" about it. Everything's  normal, get a list of questions together to manage those pesky side effects. But at other times, well, I'm scared and anxious. I know remission is often short-lived, but I want to be the exception, and I want to BELIEVE that I'm the exception. I guess it'll take a few more months before I can begin to take things for granted, if ever.
But the holidays were great. Our family made the effort to have togetherness the reason for our joy, and it was all of that. When I was first diagnosed I thought I had three months, that's all. To have been alive, HEALTHY, and happy all the way to Christmas was a real blessing. Here's to more chances for all of us to be together in the future. Kompai! (a Japanese toast)