This is going to be a long one, and I am having trouble getting my thoughts down so I am going to send this out in installments.
I left Lawrence on August 31st on a 6:15 flight to Boise. It was a long day, and the start to a great adventure.
Wed Aug 31
Had to get up at 3:30 am to make it to airport for an early flight. My wonderful cousin Greg gave me a round trip ticket on Delta to Boise and from there I was picked up by Mary B. Mary is a board member of River Discovery. We had a wonderful time visiting. She was my kind of gal and conversation was easy and pleasant as we drove from Boise through the mountains to Salmon, ID.
Her car was filled with fresh peaches -what a fragrant trip! We also stopped at a fruit stand and grabbed some fresh fruit and veggies and stopped in Stanley for a picturesque lunch. These are beautiful mountains and the scenery was incredible. Mary and I talked about love, marriage, knitting, children, life, cancer and of course, River Discovery. We arrived in Salmon around 5pm and I was wiped out, I ate a snack and then slept for about 12 hours.
Thurs Sept 1
Woke up Thursday with good energy and had a relaxing morning, enjoying ‘modern’ amenities like hot water and flush toilets for the ‘last’ time for a week! I had a room at a hotel right along the Salmon River in Salmon and I do admit to watching the water flow at a rather speedy current and thinking, “Oh, my goodness, what have I gotten myself into?”
I was picked up by Mary W., the exec director of River Discovery. She already had three passengers in the car and they had just flown in from Boise and were participants in the river trip. We drove out to Morgan Bar (every campground, ranch, historic settlement, etc. along the river is called a bar because most are sandbars!) This was a lovely spot with an area for eating and camping. We ate a nice lunch and then had lessons on putting up our tents. More participants arrived throughout the day and by the end of the afternoon a small, cozy crowd of campers, guides, board members and friends had gathered for a send off dinner.
It was clear to me that our group of survivors was meshing well. This was an amazing group of women. We had 15 members ranging in age from 21 to 69. We had some women who had been cancer free for years and others who were still in treatment. Most had breast cancer and a few of us were battling other cancers. Most importantly, you could hear laughter coming from various areas and see friendships forming as the afternoon passed into the evening. I had a great feeling about the trip that night and the arrival of Cousin Ellen really made me heave that great sigh of relief that comes when you feel good things falling into place.
After dinner, our lead guide, Amy, gathered everyone around to give us a bit of information regarding what the schedule was for the next day. It all sounded so wonderful, and scary, but I was ready. Wonderful Ellen had brought her tent and offered it to me and needing the privacy, I gladly accepted it. I shared a tent for the first two nights with lovely Rachel. She celebrated her 21st birthday that day. After that, I took Ellen up on the tent offer and it was nice to have a place of my own, a place for a nap and some quiet time.
We were given a diary for the trip and ended the night with a bit of conversation around the campfire.
Fri Sept 2
The next morning dawned bright and clear, but very cool. It was our first full day on the river. We had breakfast, struck camp and loaded up on the bus for about an hour's drive to the load in area. That first day on the river was a little cool. We started out with sun, but the wind was blowing through the canyon and it quickly got chilly when we got wet. We had one boat that overturned in a rapid and had some shocked campers at that point. I was exhausted, cold and tired and let myself kind of fall apart that early evening. I thought for sure that this had been a mistake for me and I was not going to be able to continue at the same pace. Then I realized that I needed to pick myself up and keep moving. After a quick rest, I joined the group. I wasn't going anywhere but down the river.
We arrived at our evening stop called Lance Bar. As a team we unloaded the boats, put up camp, changed into dry clothes and gathered for our first night on the river. Once I had had a chance to rest and cry a bit, get over the stress, I settled in for a good evening. We had a delicious dinner of salmon and spinach salad.
We closed the evening by telling a bit about ourselves and what we hoped our experience would bring to us. It was wonderful to hear other's comments and a great way to get to know people. I went to sleep with a bit of apprehension for the next day. We wouldn't be leaving any rapids or the cold water behind and I quickly needed to get used that idea!
Sat Sept 3
Today dawned beautifully. We had a delicious breakfast of pancakes, I tried to go the GF way with yogurt and fruit. Everything tastes different in the wilderness. I finished every morsel I put on my plate at every meal. I quickly threw out the gluten free strategy after that because I decided that to limit myself in this environment was a little looney. I was going to need all the food I could eat.
We spent the morning taking a short hike up the the Lance homestead. Amy was full of wonderful information about Mr. Lance who had settled the land. In those early days, he had to walk out 75 miles to get to the nearest town. He made quite a home for himself though and the valley was incredible. He had his own orchards, a fresh water source and the means to support himself and stay occupied. I have always romanticized this life, but it was so isolated. It would have been hard being so far away from others, yet that was part of the beauty of the land. It was overwhelming and awe inspiring and really inspired self reflection from me. I knew I was in a special place and was reminded by Ellen's urging that the river was a really healing place. A place of now, where you must be connected with your immediate surroundings. Only 24 hours in and I really started to enjoy the rhythm and peace of the day.
While on this trip we had to pack out everything we brought in except our urine which was released into the river. I had to deal with my colostomy on this trip and I was (very) concerned about how I would manage and am happy to report that I managed just fine. But how lovely to come back to flush toilets!! The first night or two was daunting, but eventually I fell into that rhythm I wrote about and it didn't take long for my body to follow .I was moving into this quiet and comtemplative place and could feel myself enjoying it. We did have lots of fun and made lots of noise, and drank some wine. So the next morning, like all following mornings, we struck camp and loaded the boats and left the previous day's camp. It was utterly simplistic and quietly serene.
I spent this second day with the same women and same guide. We were headed into an exciting day - depending on how you look at these things! Kyle (said guide) had told us much about the river. We learned out to listen (sometimes hard with all the talking), and how to look at the river’s horizon line to determine the change in the river. But we were also approaching a rapid that had changed over the course of the year. He had not gone through it yet and so the plan was to stop and scout the rapid before we went down the river. I agreed this was an excellent idea, further reinforcing my faith in the guides and their rational thinking!! This caused much anxiety on my part and others, but I believed it was inevitable, right? We had to go downriver, always forward, just like pushing through the cancer, we can't go back. It took until we were actually cruising through the rapid that I actually realized I was okay and I was always going to be okay. That in all these years the basic truth is still the same. I am okay and will always be okay. I followed total strangers (the nurses, the doctors) in to the cancer club and I was doing okay. They’d given me good advice and I have followed it and I am still alive. And I had followed these strangers, these guides into the wilderness and they had steered me clear and safely, always forward, never back.
The river really is a healing place.
It was another long day on the river, but because of the rapids we went through that day we covered more mileage and the weather was slowly getting warmer - a sign of the change in the elevation good fortune in weather!
That night's camp was established quickly. We were losing light and wanted to eat and then end the day as quickly as possible. I used pain killers as needed, mostly for my back and that really helped with the bouncing and constant movement. I was exhausted again, but feeling like I was keeping up with the group. I slept better that night, probably better than all the other nights. I wasn’t feeling an ache for home or for anything really. I was really in that time and place.
Tuesday, September 20
It has taken me over a week to pull myself together since the end of this trip. I came home on Thursday, September 9. Richie and Charlie met me at the airport and it was so, so good to see their faces. And then to walk in the door of our home and hug Madeline. I was complete. We had a lovely dinner on Thursday.
Friday morning we discovered I had a bacterial infection. It was likely my port that was the point of entry for the infection and so since Friday, September 10 I have had my port removed, a picc line inserted into my left arm, twelve IV infusions of vancomycin, and one infusion of doxil. So, forgive my tardiness, I have been re-entering the world.
I believe I was on my way to the wilderness before I actually got there. I realized that I have been on this healing journey since the day I was diagnosed. I have had to be on this road because there is no other. I was so lucky to have those moments and times with each woman and man that went into the river with me. But each one of you was represented in one of them. You have all been with me, always, all along the way.
Thank you.
I hope to have some more posted next week. I find that taking some time to digest has been a good thing. No reason to rush, the memories will be here next week and so will I.
Maggie
Wednesday, September 21, 2011
Monday, August 29, 2011
Idaho!!!!!
It has been a hard couple of weeks in the cancery world. A couple of my girls are really suffering right now, fighting for their lives and holding to their families. I need the friendship of these ladies. I need their humor and their wisdom. I need their honesty and their help. I find that I do better with a 'virtual' group and these ladies have been an important lifeline for me this last year.
And what a year it has been. After the ctscan craziness of June 2010, I was faced with a return to the carbo/taxol routine. At this time last year, I was wallowing in self pity and bald again. I had sent Richie and C alone to Camp for vacation and the only good thing that seemed to be happening in our lives was that M had made it home safe and sound! But oh, what a difference a year can make.
Wednesday morning, Aug 31, I leave for a six day trip on the Salmon River in Idaho. I am going as a part of the River Discovery organization for cancer survivors. I will be with 14 other women and the staff and crew running this excellent organization. I am still reeling from the unexpected invitation and the speed with which this trip is happening.
I had applied for the program back in February, but was slow in getting my paperwork returned and was put on the waiting list. I felt comfortable that if I was meant to go, it would somehow work itself out and it sure worked itself out! I got a phone call last week from my cousin Ellen. Ellen is a member of the River Discovery organization and she was calling to tell me that a space had opened up for me. Sadly, another woman was not able to go and had to drop out, but that meant I had an opportunity and I grabbed it.
Ellen also helped in making arrangements for me to fly from KC to Boise. My cousin Greg was so generous as to donate some frequent flyer miles and voila! I had transportation.
I am scared, excited, anxious and stressed, but all in a good way. I am mostly worried about being able to keep up with the group. Will we have nap time? (haha) and how will that colostomy care be out in the wild? Ellen says not to worry that she's got a plan and of course, I trust her. So now it's just a matter of going and being, of seeing and enjoying. There is not of lot to enjoy about cancer, but I will enjoy this trip. I will post some photos and tell you all about the trip when I get home.
And what a year it has been. After the ctscan craziness of June 2010, I was faced with a return to the carbo/taxol routine. At this time last year, I was wallowing in self pity and bald again. I had sent Richie and C alone to Camp for vacation and the only good thing that seemed to be happening in our lives was that M had made it home safe and sound! But oh, what a difference a year can make.
Wednesday morning, Aug 31, I leave for a six day trip on the Salmon River in Idaho. I am going as a part of the River Discovery organization for cancer survivors. I will be with 14 other women and the staff and crew running this excellent organization. I am still reeling from the unexpected invitation and the speed with which this trip is happening.
I had applied for the program back in February, but was slow in getting my paperwork returned and was put on the waiting list. I felt comfortable that if I was meant to go, it would somehow work itself out and it sure worked itself out! I got a phone call last week from my cousin Ellen. Ellen is a member of the River Discovery organization and she was calling to tell me that a space had opened up for me. Sadly, another woman was not able to go and had to drop out, but that meant I had an opportunity and I grabbed it.
Ellen also helped in making arrangements for me to fly from KC to Boise. My cousin Greg was so generous as to donate some frequent flyer miles and voila! I had transportation.
I am scared, excited, anxious and stressed, but all in a good way. I am mostly worried about being able to keep up with the group. Will we have nap time? (haha) and how will that colostomy care be out in the wild? Ellen says not to worry that she's got a plan and of course, I trust her. So now it's just a matter of going and being, of seeing and enjoying. There is not of lot to enjoy about cancer, but I will enjoy this trip. I will post some photos and tell you all about the trip when I get home.
Monday, July 4, 2011
Just a Tweek!!
Since July 4, 2007 and the start of our lives with cancer, I have always been a little underwhelmed by the holiday and usually just hang at home. Easy. No energy output.
Recent weeks have brought the hot, humid air of a Midwest summer and we’ve succumbed to using the AC. Lovely air conditioning, so that we can all grab a good night’s sleep in order to face the next day.
It’s really been a lovely spring and summer around here so far. We have had lots of rain which saves having to water the plants in the garden and helps the days to cool down.
We’ve finished another school year, this one without any cancer craziness. The kids have both enjoyed a very typical summer. They sleep late, do their jobs, go to the lake with friends and stay up late. Typical, good, reassuring!
This has been a hard holiday for all of us since 2007. We chose the path of least resistance again this year, no plans to celebrate, we’ve enjoyed being home and not putting too many demands on ourselves. But then Sunday morning dawned and we woke up to realize we’d been robbed in the night. A very uncomfortable feeling of having someone violate our security here at home. Without going into detail, we are all okay, only a few things are missing and we’re working on getting things secure again. And everything will be okay really. Mostly it’s just a hassle. There’s the funny things like the dogs made NOT A SOUND, or we were sleeping very deeply. And the yucky things, like, eewww, someone opened a window to our kitchen and came into our house. And back to funny again, like the dogs did NOT MAKE A SOUND!!!!!! We learned a new word. The police called the intruder a ‘tweeker’ - someone who does a lot of meth - gggrreeeaaaattttt.
And then the real gift. Always one to find the bright spot in as much as I can, I did feel thankful that this lovely ‘tweeker’ gave us our first July 4th holiday since 2007 that we didn’t focus on the cancer. So I will get my fill of using ‘tweeker’ and then I will go back to the old definition - someone who adjusts something just so and changes it just a bit. We tweaked our cancer story this time around and it came out a little differently. A welcome change.
Happy 4th of July!
love,
Maggie
Recent weeks have brought the hot, humid air of a Midwest summer and we’ve succumbed to using the AC. Lovely air conditioning, so that we can all grab a good night’s sleep in order to face the next day.
It’s really been a lovely spring and summer around here so far. We have had lots of rain which saves having to water the plants in the garden and helps the days to cool down.
We’ve finished another school year, this one without any cancer craziness. The kids have both enjoyed a very typical summer. They sleep late, do their jobs, go to the lake with friends and stay up late. Typical, good, reassuring!
This has been a hard holiday for all of us since 2007. We chose the path of least resistance again this year, no plans to celebrate, we’ve enjoyed being home and not putting too many demands on ourselves. But then Sunday morning dawned and we woke up to realize we’d been robbed in the night. A very uncomfortable feeling of having someone violate our security here at home. Without going into detail, we are all okay, only a few things are missing and we’re working on getting things secure again. And everything will be okay really. Mostly it’s just a hassle. There’s the funny things like the dogs made NOT A SOUND, or we were sleeping very deeply. And the yucky things, like, eewww, someone opened a window to our kitchen and came into our house. And back to funny again, like the dogs did NOT MAKE A SOUND!!!!!! We learned a new word. The police called the intruder a ‘tweeker’ - someone who does a lot of meth - gggrreeeaaaattttt.
And then the real gift. Always one to find the bright spot in as much as I can, I did feel thankful that this lovely ‘tweeker’ gave us our first July 4th holiday since 2007 that we didn’t focus on the cancer. So I will get my fill of using ‘tweeker’ and then I will go back to the old definition - someone who adjusts something just so and changes it just a bit. We tweaked our cancer story this time around and it came out a little differently. A welcome change.
Happy 4th of July!
love,
Maggie
Wednesday, May 4, 2011
The Rhythm of Life
Yesterday, another ovarian cancer friend passed away from this horrible disease. Her name is Sarah and here's a link to her blog. She has a mom, a husband, two children. She had all the same vague symptoms that many of us do and she shrugged them off, attributing them to something else, to the normal stress and pressures of being a woman in the world today. She faced her challenge with grace, determination and a wonderful sense of humor and her blog has been an important part of my own path as I learn to deal with this disease.
Ten days ago, another friend, Patty, left us also. Here was another warrior woman, determined to fight to the very end and do so with humor and grace. In late March, it was Jayne. Too many deaths, too many good women who are dying from this nasty, nasty disease.
The reason I am sharing this is because I would like to ask you to take some time visit their blogs and get to know them through their writings. That is how I got to know them and although we shared the cancer as a common thread, in the end, we are all still just simple women who are faced with an overwhelming challenge brought on by this disease. There are others out there, surviving and thriving and from them I take great hope and strength from. But what I want more than anything is to keep you aware of ovarian cancer and it's symptoms. I cannot stand the idea that another friend will be touched by cancer. So take the time, get in touch with your body and it's rhythms and if you suspect that something is wrong - it is the doctor's responsibility to prove to YOU that you are okay. It is NOT your responsibility to prove it to the doctor!
Here are the common warning signs of ovarian cancer:
- bloating
- pelvic or abdominal pain
- trouble eating or feeling full quickly
- urinary frequency or urgency
Additional warning signs include:
- upset stomach
- back pain
- pain during sex
- constipation
- menstrual changes
- unexplained changes in bowel habits
- unexplained weight gain or weight loss
- ongoing unsusal fatigue
When I look back, I had all or some of the symptoms for about 6-9 months before I was diagnosed. My primary care physician was sure I was dealing with IBS and I wanted it to be that, but I think I knew it was more serious. In the end, I am still alive because I have had excellent medical care and I have educated myself about ovarian cancer and the treatments available to me. And I have had the love and caring of literally hundreds of family members and friends that have carried me so lovingly in their arms. But I don't want any of you to have to reach this point. Let's all slow down and notice the little things and small moments of the day before life gets away from us.
Here's to Aunt Cathy, Sarah, Patty and Jayne and all the other lovely women out there who have had to make the decision to stop treatment in order to live out the last days of their lives in peace and dignity. Godspeed, my friends.
Ten days ago, another friend, Patty, left us also. Here was another warrior woman, determined to fight to the very end and do so with humor and grace. In late March, it was Jayne. Too many deaths, too many good women who are dying from this nasty, nasty disease.
The reason I am sharing this is because I would like to ask you to take some time visit their blogs and get to know them through their writings. That is how I got to know them and although we shared the cancer as a common thread, in the end, we are all still just simple women who are faced with an overwhelming challenge brought on by this disease. There are others out there, surviving and thriving and from them I take great hope and strength from. But what I want more than anything is to keep you aware of ovarian cancer and it's symptoms. I cannot stand the idea that another friend will be touched by cancer. So take the time, get in touch with your body and it's rhythms and if you suspect that something is wrong - it is the doctor's responsibility to prove to YOU that you are okay. It is NOT your responsibility to prove it to the doctor!
Here are the common warning signs of ovarian cancer:
- bloating
- pelvic or abdominal pain
- trouble eating or feeling full quickly
- urinary frequency or urgency
Additional warning signs include:
- upset stomach
- back pain
- pain during sex
- constipation
- menstrual changes
- unexplained changes in bowel habits
- unexplained weight gain or weight loss
- ongoing unsusal fatigue
When I look back, I had all or some of the symptoms for about 6-9 months before I was diagnosed. My primary care physician was sure I was dealing with IBS and I wanted it to be that, but I think I knew it was more serious. In the end, I am still alive because I have had excellent medical care and I have educated myself about ovarian cancer and the treatments available to me. And I have had the love and caring of literally hundreds of family members and friends that have carried me so lovingly in their arms. But I don't want any of you to have to reach this point. Let's all slow down and notice the little things and small moments of the day before life gets away from us.
Here's to Aunt Cathy, Sarah, Patty and Jayne and all the other lovely women out there who have had to make the decision to stop treatment in order to live out the last days of their lives in peace and dignity. Godspeed, my friends.
Saturday, April 23, 2011
Quality or Quantity?
A quiet Saturday morning around here. R is out working in the yard, M is off on one of her tutoring jobs, C is at a friends house. I am taking a vitC treatment and just soaking up the peace and enjoying some fuzzy new hair on my head.
It’s been three weeks since my last chemo treatment. I can feel myself slowly gaining some energy and feeling a bit more upbeat than in recent months. The doxil will probably not show any positive results for two or three treatments and only then will we know if it’s going to help. I plan on using this time to get more focused on future alternatives, getting as many different opinions as I can. I must be able to make informed decisions as I continue down this path.
Yesterday, I received news of yet another ovca pal, someone I only know virtually and through her blog The Carcinista http://carcinista.com/ that has decided to tuck it in. She’s been struggling mightily in recent months and refusing more treatment is the next step in this rather awful process we chronic cancer patients are faced with. I highly recommend her blog. She has a wicked sense of humor and a truly lovely take on the cancer business. Her decision? Quality or quantity?
Although I want desperately to live, I have to also be aware and cognizant of what my own limits are. Someday, I will have to say “Uncle!” and only I can determine when that will be. I have a constant ‘conversation’ running through my head on this subject and have since my diagnosis. I also have regular discussions with Richie about how and when and why. These are usually accompanied by major crying jags and always when I am feeling compromised physically.
There is no satisfaction in this line of thinking, but there is a level of comfort for me. While I want M and C to know I am fighting hard to stay with them, they are living the disease as much as I am. And the realities of the disease are not pretty. We’ve enjoyed many wonderful moments in our lives together, but we have also had some extremely difficult times and a good mama takes care of her babies (no matter how old they get) as long as she can. And if there is one thing I can lay claim to - it is my ‘good mama’ status. So, I always make decisions with them in mind. How much more can I take? And how much more can my gang weather? This is not an easy path.
When The Carcinista made her decision to improve the quality of her life and be the mama her boys needed, I had a good long cry. I know in the end, no matter what happens to me, my babies will be okay. They are loved and can love, smart and beautiful, kind and funny. What more could a mother ask for? Time would be nice, but none of us have any control over that issue.
So for today I am thankful for the time I have had and for the chance to have this life. And I will hope for an even better tomorrow, one full of family and laughter and love. And I will know that I do have a life of quality, right here and now.
Happy Easter, thanks for all the meals, and for the love and good wishes.
Maggie
It’s been three weeks since my last chemo treatment. I can feel myself slowly gaining some energy and feeling a bit more upbeat than in recent months. The doxil will probably not show any positive results for two or three treatments and only then will we know if it’s going to help. I plan on using this time to get more focused on future alternatives, getting as many different opinions as I can. I must be able to make informed decisions as I continue down this path.
Yesterday, I received news of yet another ovca pal, someone I only know virtually and through her blog The Carcinista http://carcinista.com/ that has decided to tuck it in. She’s been struggling mightily in recent months and refusing more treatment is the next step in this rather awful process we chronic cancer patients are faced with. I highly recommend her blog. She has a wicked sense of humor and a truly lovely take on the cancer business. Her decision? Quality or quantity?
Although I want desperately to live, I have to also be aware and cognizant of what my own limits are. Someday, I will have to say “Uncle!” and only I can determine when that will be. I have a constant ‘conversation’ running through my head on this subject and have since my diagnosis. I also have regular discussions with Richie about how and when and why. These are usually accompanied by major crying jags and always when I am feeling compromised physically.
There is no satisfaction in this line of thinking, but there is a level of comfort for me. While I want M and C to know I am fighting hard to stay with them, they are living the disease as much as I am. And the realities of the disease are not pretty. We’ve enjoyed many wonderful moments in our lives together, but we have also had some extremely difficult times and a good mama takes care of her babies (no matter how old they get) as long as she can. And if there is one thing I can lay claim to - it is my ‘good mama’ status. So, I always make decisions with them in mind. How much more can I take? And how much more can my gang weather? This is not an easy path.
When The Carcinista made her decision to improve the quality of her life and be the mama her boys needed, I had a good long cry. I know in the end, no matter what happens to me, my babies will be okay. They are loved and can love, smart and beautiful, kind and funny. What more could a mother ask for? Time would be nice, but none of us have any control over that issue.
So for today I am thankful for the time I have had and for the chance to have this life. And I will hope for an even better tomorrow, one full of family and laughter and love. And I will know that I do have a life of quality, right here and now.
Happy Easter, thanks for all the meals, and for the love and good wishes.
Maggie
Wednesday, March 16, 2011
Spring!!
I am very thankful that Spring is almost here. Technically, we have another couple of days of winter, but today it is supposed to be in the 70s and I am going to just sit in the sun for a bit to soak up that vitamin D and revel in the warmth. The two most annoying side effects of the chemo right now are fatigue and the lack of hair on my body. The fatigue requires a lot of naps and sitting around, which is getting more and more boring as time goes by. The lack of hair means that I am cold all the time. Last night, Richie and I went to parent/teacher conferences for M at the high school. The building was freezing inside. And by the end of the evening I was shivering so badly I couldn't even walk to the car. Mr. Wonderful had to go get the car, turn on the heated seats and drive around to the doors to get me. Somewhere, somehow in this wonderful life, I did something right and was lucky enough to end up with a guy that I love and who is willing to do these kind of favors for me!!! How lucky I am!!!
We are getting ready to take a cancerless trip to the East Coast to visit colleges. Four years ago, when this crazy nightmare started, I wasn't sure I would make it to this place, but we ARE there and going to explore Bryn Mawr and Smith College with M. C is going with us, too. He's not too happy about it, but I think once we are on the road, he will change his tune and embrace the fun that is traveling with Richie. I am fun to travel with too, but a 14 year old boy is usually all about his dad and that's where C is right now. We hope to have time to spend a day in NYC and see an old friend, and then we'll drop south to the Tennessee Valley to take a southerly route home.
I decided to take a break from this round of chemo so that I would have more energy for this trek. And I do have more energy. It has led me to explore some new ideas regarding the future and my treatment options. I have been feeling lately that Dr. C doesn't have a plan for me. And I understand why. She says there is no literature or published studies that indicate how to move forward. I take a sweet delight in that. I have survived for almost four years with a stage three cancer that statistically sees most patients die during the 18-24 month period.
I have defied the odds!! Take that, you cancery bitch!!! (that's for you, Kak!)
But I also am not seeing an end to treatment. The chemo is holding me steady, but not causing the cancer to regress. And I am tired from the constant chemical attack on my body, mind and spirit.
So, after a long discussion with Richie, I have decided to do two things. First, I have made a call to the Mayo Clinic to initiate a review of my records with their staff. I should be hearing back sometime in the next week or two. I think it is time to have a new set of eyes and a new mind look at me, my treatment history and figure out if there is anything else that can be done to help me.
The second decision I have made is to talk with Dr. C about not only switching to another, less devastating chemo regimen, but to also look at mixing up the schedule. If I am to always be on some kind of chemotherapy, I want more control over how and when. I want to have regular breaks so that I can have some more quality time with Richie and with the kids. This short break has shown me that I need to have a chemo vacation every now and then if I am going to be able to deal with the effects on my body. The risks are great because the cancer could start growing or metastisize at any time. But I also feel like the chemo is slowly killing me. So, will the chemo or the cancer get me first? I know I have no control over that in the end, but I do have control over the now and today. And I going to take that control now.
I will never give up the hope that I can "beat this bitch" and have a life free of cancer. But I also want to live now. I want to have the energy for trips like this one we are going to take, to work in the garden, to take a long walk or bicycle ride. I want to have the energy to enjoy where I am right now! And that has become harder and harder to do. So, wish me luck, send those prayers, shoot me some positive energy if you will. I think it's going to be a wonderful spring and summer. And I hope to have some hair on my body by next fall and winter so that I don't have to spend every day hovering by the fire. But that hasn't been a bad place to be, either.
Thanks for all the help and love, we feel it.
We are getting ready to take a cancerless trip to the East Coast to visit colleges. Four years ago, when this crazy nightmare started, I wasn't sure I would make it to this place, but we ARE there and going to explore Bryn Mawr and Smith College with M. C is going with us, too. He's not too happy about it, but I think once we are on the road, he will change his tune and embrace the fun that is traveling with Richie. I am fun to travel with too, but a 14 year old boy is usually all about his dad and that's where C is right now. We hope to have time to spend a day in NYC and see an old friend, and then we'll drop south to the Tennessee Valley to take a southerly route home.
I decided to take a break from this round of chemo so that I would have more energy for this trek. And I do have more energy. It has led me to explore some new ideas regarding the future and my treatment options. I have been feeling lately that Dr. C doesn't have a plan for me. And I understand why. She says there is no literature or published studies that indicate how to move forward. I take a sweet delight in that. I have survived for almost four years with a stage three cancer that statistically sees most patients die during the 18-24 month period.
I have defied the odds!! Take that, you cancery bitch!!! (that's for you, Kak!)
But I also am not seeing an end to treatment. The chemo is holding me steady, but not causing the cancer to regress. And I am tired from the constant chemical attack on my body, mind and spirit.
So, after a long discussion with Richie, I have decided to do two things. First, I have made a call to the Mayo Clinic to initiate a review of my records with their staff. I should be hearing back sometime in the next week or two. I think it is time to have a new set of eyes and a new mind look at me, my treatment history and figure out if there is anything else that can be done to help me.
The second decision I have made is to talk with Dr. C about not only switching to another, less devastating chemo regimen, but to also look at mixing up the schedule. If I am to always be on some kind of chemotherapy, I want more control over how and when. I want to have regular breaks so that I can have some more quality time with Richie and with the kids. This short break has shown me that I need to have a chemo vacation every now and then if I am going to be able to deal with the effects on my body. The risks are great because the cancer could start growing or metastisize at any time. But I also feel like the chemo is slowly killing me. So, will the chemo or the cancer get me first? I know I have no control over that in the end, but I do have control over the now and today. And I going to take that control now.
I will never give up the hope that I can "beat this bitch" and have a life free of cancer. But I also want to live now. I want to have the energy for trips like this one we are going to take, to work in the garden, to take a long walk or bicycle ride. I want to have the energy to enjoy where I am right now! And that has become harder and harder to do. So, wish me luck, send those prayers, shoot me some positive energy if you will. I think it's going to be a wonderful spring and summer. And I hope to have some hair on my body by next fall and winter so that I don't have to spend every day hovering by the fire. But that hasn't been a bad place to be, either.
Thanks for all the help and love, we feel it.
Wednesday, February 16, 2011
More Tests, More Chemo, Feeling Better
Yesterday, I finished my twelfth round of carbo and taxol. I already feel better than I did three weeks ago. And that is good. I still have hard days ahead of me, but I think the routine I have established - reiki, acupuncture and cranio-sacral work, will help over the next few days. Feeling naseous and exhausted, but I don’t think this round will be as bad as the last. Good news is a slightly lowered CA125 and some info form Caris Target. It lets me know we are on the right path, added femara and the vitD has been a good thing to be on. Reminds me that I am on the right path and maybe all I need is a little more time and some patience.
It’s been a long four years and quite an incredible adventure. Recently, I asked Dr. C for some addtional testing, specifically to find out whether or not I was BRCA positive. This is testing for the breast cancer gene. The results came back negative. The really wonderful result of this news is that means that my babies most likely do not carry the breast cancer gene and are very unlikely to develop the disease. Breast and ovarian cancer can go hand in hand and this news alleviates a lot of worries, specifically for M, who has had a cloud of worry hanging over her head for the past couple of years.
Another test I requested was to have my most recent tumor tissue samples sent to Caris Life Sciences. Caris recently has started testing specifically for ovarian cancer patients. They take the tumor and do specific biomarker analysis and then compare that information available in published medical articles and treatments. The results showed that I have estrogen protein markers on the surface of my cancer cells. So now I am taking a drug called femara which has been shown to help prevent cancer recurrence in estrogen positive breast cancer patients. The Caris report also suggested that I would benefit from taking VitaminD3 with cal/mag. I have been taking vitd and cal/mag since Jan09 when I started with Dr. Drisko at KU Integrative Med! There has long been evidence that cancer patients are very deficient in vitD and after a simple blood test, she was able to determine that I needed to take this. It was a good feeling to know that I have been doing something to help myself, something so simple really. Dr. C said for all we know this has been something that has been helping me stay strong all along!!
Finally, the Caris report suggested chemotherapy drugs that would likely be beneficial to me, as well as a list of chemos that would likely not be helpful to me. The ‘good’ list included all the drugs that I have been taking. And one or two that I haven’t had yet, it gives me options! Both Dr. C, Richie and I left that meeting feeling a bit heady. It was nice to have new information to go on. Keep in mind, this information is based on a tumor that was two years old, but it is better than nothing. And a good way to look at it is that I haven’t had enough tumor growth activity to ‘harvest’ any more tumor. Things have been tough because I have had been on these constant rounds of chemo, but I also have had no disease progression, rather I have steady disease. It doesn’t make the day to day fight any easier, but it makes my overall prognosis seem much easier. As TJ said, possibly the one good thing about this cancer is that it is slow growing. And that slow growth has given me more time with Richie, M and C and with my incredible family and all my wonderful friends.
So, tonight is another choral concert, and my handsome C will be participating. I will take some anti-nausea meds (for the chemo, not the singing!!) and enjoy seeing my baby perform his music. He has been working so hard these past few weeks and I am so proud of him! M is doing well, working hard at school and trying to juggle all the exciting information in her college search. And she turned 17 last week! I am still reeling from that one, my baby, seventeen! Richie is doing well, too. We are all excited about some warmer temps around here this week. If we can just get a bit of sun that will be icing on the cake and I will sit on the porch and soak up some more vitamin D!!
Thanks again for all the love and support. I can’t imagine having made this journey alone, it’s been long and scary, but also full of love and support and I count myself as a lucky and blessed individual to have had all of you with me.
Maggie
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