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!

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)

Giving Thanks

I thought about writing this to be read at our Wednesday-Before-Thanksgiving gathering. But just imagining doing that made me pretty emotional, so I've decided to write in the blog instead.
I CANNOT be thankful to have cancer...and a nasty one at that, and yet due to my diagnosis I have been made aware every single day of so many reasons to express gratitude. I want to name specific people today and say thank you - and that's not even enough to express how I feel.
Those of you who know Willie G well, know how very faithful he is. I am so lucky to be able to tell him anything. He's my rock, (and boy, have I needed to cling), and my truest love. How people find each other in this big wide world is a mystery to me, but I sure was lucky when Billy Jack showed up in the fall of 1971 with Willie G in his truck.
 And speaking of Billy Jack...he and Soleil have been like Mom and Dad to us, bringing meals, hanging out in the hospital, cheering us on. And they've continued doing all of this throughout Soleil's own medical crisis.

My sister Alicia drove here twice to see me through the roughest patches, held me when I stood at the stove, overwhelmed at the thought of making the morning oatmeal, and kept her lovely sense of humor throughout.

Willie G's sister, Pat and her husband Mike dropped most of their daily routines to take care of us in Houston. The best thing that happened was when Pat and I got the news together that the first 6 rounds of chemo effectively eliminated the disease. We laughed and cried and danced a hugging dance in the conference room.

Mary Jane regularly showed up at my door to hang out. I sure needed those hours of distraction. She and Bill gave us heaps of garden produce when my own neglected garden limped along.

Thanks to Greg and Martha for books and flowers I'm still ploughing through the stacks. Jill sent over Vietnamese pho and a HUGE roast. My red blood cell counts remained high enough to receive chemotherapy on time. From Byron came firewood and garden plants, so thoughtful.

Sandy checks in often, just to see how I'm doing and brings flower gifts and the very necessary pot.. And she and Soleil just KNEW to come and be with me at the night of my diagnosis. I didn't even know that I needed to have someone with me, but they were so totally and lovingly there.

Ammed and Brianne, I'm still using the items from your "Happy Basket." And Brianne that quilt....Oh!

Kathy and Steve, playing Scrabble the night before surgery was the best thing we could have done. Thanks for that time and all the other times you've shared with us, providing a much needed distraction.

 Stephen and Ruth Ann Zoeller have been right there too, holding out hands through some tough days.
And Holly's many, many careful massages. I knowed I healed faster because of them.

Thank you Bobby and Katherine for the mommy-daughter weekend, and for all your messages of love.

Gabe, Za, and Robin: You've been champs. I know how distressing this illness has been for you, but you continue to call almost every day and I cannot tell you how much I love you. Above all, I am so grateful for you darlings. Your father and I are so very proud of the fine people you are. Thank you for being willing to share your lives with us still.

Whew, this is long, isn't it?
So, every day I wake up glad to still be here HERE in my comfortable home, on a beautiful piece of land, surrounded by a community of love. I have received notes of encouragement from people I know through work, church and chorus. I am humbled by the prayers made on my behalf and the unconditional goodwill so many have expressed. Thank you all for helping me know and recognize what really matters in being alive. You've helped me savor this remission and I know I can bear the recurrence should it come to pass.
Happy Thanksgiving
I love you
I am grateful

NED

On Thursday, Oct. 21, I met with the MD Anderson oncologist to review the results of the previous day's ct scan. He told me that there was no evidence of new disease. This is the best report that I could have hoped for. It was all I could do to keep my composure and not jump up, scream, do a happy dance, kiss and hug everybody in the room.
Now, I know that O/C recurs really, really frequently, but I won't have another test for at least 3 months. I'm going to have as much fun as possible in those 3 months, grow my hair, eat whatever I want, and not think about cancer 24/7. The maintenance drug he recommended is a pill (no more needles) taken daily, and has few side effects. This is a regimin I can live with.
Today I'm on my way to Oregon to see Gabe, Robin, and Neva for a week or so. Life is really, really good.

The Kindness of Strangers

In the past couple of days I've encountered some incredibly kind people, you know, the "random acts of kindness," directed at me. Even though I'd never consider cancer a blessing, I do recognize that these things probably would not have happened to me except that I'm obviously a cancer patient (no hair, eyebrows, eyelashes). So I see them as little miracles. Here's what happened:
Miracle #1. Last Friday, 6 days before my MD Anderson appt.) I got a call from that hospital that my insurance won't pay for out-of-state CT scans. The scan is one of the main reasons I want to return there. The next Monday, I talked directly to the insurance person who approves/disapproves coverage, and after a bit of honest talk she went ahead and gave us an approval (but won't do so ever again!)
Miracle #2. Yesterday I flew to Houston for the MD Anderson appointments. The cheapest way to fly involved 3 flights: CRW to ATL to Orlando to HOU. The Atlanta to Orlando was delayed so that I missed the flight to Houston by seconds; after rushing through the maze of Orlando's airports. At first the gate agent suggested I rent a car and drive to Tampa where he could get me on a flight. I nixed that idea while trying to NOT cry. Then he said, "Meet me at the next gate in 2 hours. I'll get you on that flight." and he did!
Miracle #3. On a airport train-like thing, a young man said, "Ma'am, your shoelaces are about to come loose." I started to explain that they are just extra long and always stay tied, but just leaned over to give them a little tightening instead.
The young man went down on his knees and said, "Please, let me do it. I was in the military and I just have to do it right. You could fall and hurt yourself if you stepped on them." And there on the little swaying train a twenty-something man double-knotted my shoelaces. It wasn't creepy, just very, very, sweet.  Of course, I UN-double-knotted the laces after boarding my plane.
Today I have a day of labs and tests at MD Anderson. Tomorrow the Dr. tells me what they all mean (or so I hope.)

The End of Chapter 2

I had my final round of chemo this past Friday. It feels like the end of a chapter. I'm glad to be done for awhile, give my body a rest, and my psyche too. After 3 weeks I'll go to MD Anderson, have a CT scan, and begin to figure out what's next. Although I'm not optimistic, I do hope to get lucky and at least have a bit of remission. The coolest thing is that I'm not particularly anxious about what's next. I suppose having ridden out a huge surgery, and then this first 6 rounds of chemo, I feel like I can handle what's next. Of course it has all been easier because I have Willie G, Za, Gabe, and Robin's steady encouragement as well as our amazing farm community, Pat and Mike in Houston, Alicia in Kansas. There's also a trip to Oregon to see Neva Jean, Gabe & Robin in my near future, and if that's not something to look forward to, I don't know what is!
Fall has arrived, and I'm going to enjoy it.

#5 Down!

I didn't really expect to have chemo 5 yesterday. My platelets were too low on Wednesday, but went from 79 on that day to 104 on Friday. Hooray for buffalo burgers!
Now I'm awake at 1:30 AM thanks to the load of steroids I've been given. I'm bracing myself for a hard crash - already feeling yucky in my head. Alicia, my sister, is here until Tuesday to help me ride it out. Last weekend we had Za and Gerrit here to visit for several days. Such glorious visits, I can't complain about a few days of crappiness now, can I?
I received two bits of good news from the doctor on Wednesday. My CA 125 is 33. That is considered within normal range and shows that the chemo is working. With low grade tumors, the CA 125 isn't totally reliable, but that's still good news. And there are no genetic markers indicated from the tests we had done. That means my female relatives can breathe a sigh of relief. But be sure to have check ups every year and make your doctors listen to any weirdness you think is going on with you. Ovarian Cancer is sneaky.
A cold front has moved in, and the air is sweet and fresh. The barred owls hoot down in the hollow behind our house. Maybe, just maybe they'll sing me back to sleep.
Goodnight everyone. I have to thank you over and over for your loving support.

Hit hard

That last chemo was a real slammer. Not until 9 or 10 days after did I begin to feel somewhat back to normal. Until then I mostly dragged around the house feeling sorry for myself. Soooo unattractive.
Yesterday I went to a "Look Good, Feel Better" class sponsored by the American Cancer Society. It was about using makeup and head coverings to enhance your self image after chemo changes all that. Well, it was a fun and funny experience. Having never been one to use much makeup, I was a real newbie in the ranks. The eye shadow was a terrifying experience as was foundation!
Then, to top it off, I ended up with a wig. I find them (wigs) kind of creepy, but it was one of those times when you feel like you'll hurt someone's feelings if you turn them down. Once we were all dolled up, the lady sitting at the table next to me told me, "Well now we need to go out bar-hopping!" In addition to the free wig, we all left with bags filled with cosmetics, all donated by different manufacturers to this program. The American Cancer Society does well with the donations they receive. I applaud them.
So now it's all about platelet building until the next chemo. Protein and veges, hooray! And we have cool weather so gardening is possible. This year it's the triumph of pumpkins and peppers. Tomatoes got sick.