I have today...

I think about this cancer all the time. Sometimes I wish I had an answer as to why I got this cancer. I know I didn't cause the cancer. All the good psychotherapists tell you, "you didn't cause this to happen." Nobody is that good, they say. And yet, what could I have done differently? That is a really slippery slope. I won't go there.
I don't go there. Honestly, though, I go there. What should I have done? There's a lot riding on this. My husband, my daughter, my son....

I don't know if I would change the experiences of this last year. Certainly, I would change the cancer to something more exotic, more curable. But I have learned more about myself, more about my family and my friends, I have learned that I am surrounded by wonderful people, people that have helped me and my family and shown me true, true love. It has been a humbling and glorious experience. I am a blessed and lucky woman.

I choose to view this as a journey, as a chance to make changes in my life. I am so thankful. I almost died last year. Sometimes that reality comes into focus and I think, "I have today!" I am thankful for each day. I still get mad at my kids and impatient with the dogs. I forgot Tuesdays are trash and Wednesday recycling. Laundry piles up, bills need to be paid, errands to be run and the dishwasher emptied. But those are the days I get, days I might have missed. So the frustrations of my life before cancer are vague memories. The frustrations of life today are just that, frustrations that happen and are gone. I don't hold on to anything negative anymore. That is the optimist in me. I choose to hold on to the positive things that happen, and if they happen to be negative, I do my damndest to make them positive - and I am usually successful.

I feel an increasing sense of peace regarding my diagnosis and my future - mostly because I don't know what that future holds! We are born and we die, we don't get a choice in either. I feel prepared for whatever happens because I have had such a wonderful life until this day.

At our house we say, "It is what it is, we can't change yesterday, we don't know what tomorrow will bring, so we have today." I say that to myself every morning and every morning I choose to live.

I know is may seem simplistic or maybe too goody, goody, but I just don't want to live any other way.

I just don't want to waste any of my days being depressed or sad. I hope for many more years, but I will just take what I get, what each day brings me.

The reason for all these musings is that I woke up today, took the dogs for our walk, and saw the beauty of the day, felt the warmth of the sun and realized, "I am O.K., I am O.K." I am starting to let go, I can move forward. It is going to be alright.
Always hopeful....Maggie

Many, many thanks

Here is some information I wanted to share with you. This wonderful group of friends has organized a gathering for my family and me. I can't thank them enough. What a great opportunity for us to get together, share some good cheer and positive energy with one another. Thank you, thank you.

Friends of the Maggie & Richie Backus Family are hosting a benefit concert and celebration to be held August 17, 6-9, at Liberty Hall, in downtown Lawrence. Local musicians will perform the songs of Neil Young and Lucinda Williams throughout the evening, with all proceeds going to the Maggie Backus cancer fund. All ages are welcome. A community of friends from near and far wish to help Maggie with her fight against cancer and to offer love and support to her and her family. In addition to a night filled with great live music Maggie will speak briefly on cancer awareness. Light fare will be provided as well as a variety of activities geared towards younger people with a silent auction of both real and imaginary items! Everyone is invited. Besides a grand celebration we also hope to raise enough money to help offset the costs of Maggie's treatment. A twenty dollar donation is suggested (kids at half price) but all are welcome regardless. Anyone wishing to participate or be more involved please contact us through BackusBenefit@yahoogroups.com .

Many people have been hoping to help us out with meals and we are very thankful for the offer of help. Right now, we are doing really well on the food front. My friend, Noelle, and her husband graciously organized a wonderful 'meal drive' for us. We have over twenty meals in the freezer ready for us to eat anytime. So, for now, we are full up with ready to heat meals and the good feelings that come with so many trying so hard to take good care of us. Thank you all again and again and again.

On the cancer front, I am feeling pretty good all things considered. I have managed to make it through the second round relatively unscathed. Fatigue is my constant companion, but I am managing pretty well - up early when my energy is good and down early when my body calls for it. I have had some bothersome trips to the bathroom and a little ache here or there, but it seems a small price to pay for being here and now, being alive and being able to touch Richie, Madeline and Charlie for one more day.

Richie and I aren't sure what we have done to deserve such wonderful friends, but we sure are glad you are all there. This would be a long and lonely road without you. Remember that we feel your help everyday and we are extremely thankful for it.

Here is a short note from Madeline:
maddie cut herself shaving, say your prayers.

Time Away

Richie and I went to Ft. Scott Friday night for 24 hours of just us. Ft. Scott is about 90 miles south of here and we managed to make it down there in about two hours driving the secondary (and even smaller) highways. We drove about 150 miles on the way down there.

We used to do this kind of rambling all the time. Early in our courtship and marriage, with very little money to entertain ourselves, we would routinely buy a six pack of beer and head out of town to drive and look at the countryside. Sometimes we went with friends and made a true adventure out of it, but mostly we went alone. Those were really special days. Anyone who knows me and Richie knows how we both can talk - on and on. Imagine the two of us together, we never shut up and we always have something to talk about.

The joy of the kids and the craziness of life has made these rambling 'dates' come fewer and far between but we both still love driving aimlessly - as long as we are together.

We stayed at an old hotel in downtown Ft. Scott. It is a beautiful but sad looking downtown. There isn't much going on there. We had a lovely time, talking, catching up with each other and just being away from the chaos of our lives.

The trip home was an adventure as well. We broke down in Parker, Kansas. This place is so small I was surprised it was on the map. After about an hour, a few calls to Tony, and some patience - "it is what it is" - we were able to get the car going and made it home. The heat of the day and long car ride left me feeling a bit nauseous, a feeling I am getting used to now.

It was a delightful departure from our everyday life and another reminder of how wonderful our life really is. Coming home to the sink full of dirty dishes didn't even faze me - until I realized that was the one job I had asked the kids to do. And then the phone started ringing. The dogs needed food and attention. And then I reminded myself, I have this. I have a wonderful life full of people and animals and things that need doing. I have a life.

Two Down and I wish I knew how many more to go.....

I had my second visit to the doctor and second round of chemo this week. At this stage and with the recurrent cancer involved, we did not expect to hear really great news. Typically what happens is the CA125 numbers continue to rise until you get more of the drug accumulated in your system.

So, a few weeks ago my CA125 was about 550 and this week's visit puts me at 950. It might go up another 200 or more points before it starts to drop. I continue to believe that this can be viewed as a chronic illness, but I sure wish that the numbers had dropped and this was going to be my magic medicine. I suppose it still can be. Patience, patience Maggie.

Today I feel a bit nauseous, just not interested in food. I also have some fatigue. It could be that it is late in the day and I am just tired. I am listening to my body and taking it easy, but also trying to at least do something each day. I have to keep moving forward and doing things just like I would in a 'normal' life. This is my normal life now. So today's project was framing the pictures we had taken of Mads and Char last year. That was a good project, they always bring a smile to my face.

Happy Birthday to Me!

Today is my 44th birthday. I find it hard to believe. I still feel like a kid sometimes. I am going to hold on to that for a long time to come.

Whew! Today I feel like I have finished the first round of the new chemo. I woke up feeling excited about the day, ready to do something, anything.

Generally, even in the midst of feeling bad, I still feel remarkably good. I may feel a little fatigue, a little nausea, a little stomach pain but I can still take a good long walk everyday, run errands, laugh with my family. I still feel incredibly lucky.

The joy of all this is that I can visualize myself surviving with this ‘condition.’ I have some issues I still need to work through, but who doesn’t? I can’t say it enough, I am a lucky person, I am alive.

This weekend we head to St. Louis for a big birthday bash. We are celebrating the June, July, August and September birthdays in my family. There are over 35 birthdays between my parents, siblings, aunts, uncles and cousins. It should be a great gathering of my family, something I always look forward to. There is always much laughter, many hugs and kisses and a great deal of love that goes around.

And my birthday is tomorrow, July 11. I will be 44 years old. I can’t believe it. I am sure it will be a good day. I can feel it in my bones.

One Year Later

July 4 marked the year anniversary of my diagnosis. One year ago we were taking up temporary residence at the Faxon St. Luke's Hospital in Utica. It seems like a lifetime away.

It seems like that life and time belonged to another person. She and I had much in common, but I am the survivor. I am the one that lives. I have help from the established medical community and am working with others to determine which alternative therapies will help me to live more fully. I am the one who is alive.

I have managed to make it through the first round of patupilone with minimal side effects. I had some nausea and diarrhea (can you believe I am writing about that?!?)
We marked the day just like any other celebration: good friends, BBQ and fireworks.

Rich took some time off work and we have had a relaxing time enjoying the pleasant weather. As always, I am thankful for being alive and having the chance to celebrate anything these days. Life is good.

Day Five

We survived the big birthday bash weekend. Charlie’s twelfth birthday was yesterday. This is a big birthday. Next year he’ll be a teenager and he is struggling with the transition to junior high. Given the chaos of this last year, we wanted to make this birthday a biggie. Madeline got Poland for her big day this year. Charlie got some great gifts, like the road bike he wanted, and a sleepover with three good buddies. They stayed up until 5am on Sunday morning. My apologies to the parents, but as Richie said, “This is what they are supposed to be doing!” We ended the weekend with a visit to his favorite restaurant with Tony, Alex and Simon – a boy couldn’t ask for a better time!

On the cancer front, the new drug I am taking is called patupilone. I don’t know why it is not capitalized like other cancer drugs, maybe because it isn’t a registered trademark name yet. I find this aspect of the whole drug industry rather interesting – must be some big money (and maybe egos) wrapped up in this. It makes sense. This is big stuff, hopefully life altering stuff involved.

So this patupilone is an epithilone. And this kind of antitumor medication is supposed to bind to the intracellular microtubules, which are essential to cell growth, and inhibit that growth. Right now, our hope is to stop the growth of the cancer.

It is day five since the infusion of the new drug. I was told to expect a reaction anywhere from 24 hours, but more likely 7-9 days, after the infusion. Over the weekend, I felt slightly nauseous, really just ambivalent about food. I am eating because I know my body needs it, but not because I feel particularly hungry. I could also experience diarrhea, abdominal cramps, fatigue and neuropathy. I am hoping for the best, preparing for the worst and really just living day to day. This is not a bad thing.

Today, I feel good. I have errands to run, children to rear and a rug or two to vacuum. Life is good.