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.
Wednesday, January 12, 2011
Monday, January 10, 2011
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)
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)
Tuesday, November 23, 2010
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
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
Saturday, October 23, 2010
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.
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.
Wednesday, October 20, 2010
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.)
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.)
Sunday, September 26, 2010
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.
Fall has arrived, and I'm going to enjoy it.
Friday, September 3, 2010
#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.
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.
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