TGIF

I never thought I would use the "TGIF phrase" except for celebrating the end of the work week and to show my excitement about the weekend. But I must use it here because, Friday, January 2, I will have my surgery. It has only been 12 days since the onc diagnosed my latest problem and said that surgery was the only fix, and it will only be 16 days since the diagnosis that I will be having the surgery. But these have been long, long days.

It was wonderful to have the break from the hospital and come home for Christmas and I am very thankful for that. That was my onc's first question today and I know she gave me a great gift. Now I will be readmitted tomorrow and will work on getting my whole body ready for this next surgery. Rich and the kids will be with me and I know many of you will be with me in spirit and prayer. I should be home from the hospital within 8-10 days from the surgery depending on how well I am recovering.

My best to all, thanks for everything, Maggie

A Very Fine Christmas

We had a wonderful Christmas Day.

I think I was in my pjs and cuddling under a blanket by 3pm yesterday. That, to me, is the mark of a good day. We woke early for a family with two teens. They were so excited to rip into the gifts. The excitement surrounding the holiday was not as palpable for us this year. My recent setback and the resulting fatigue made it hard for me to get excited and I think it was hard for Richie and the kids to find their spirit in the face of hospitalization and surgery. But find our spirit we did. We were able to keep their gifts in the surprise category. They had asked for things, but we did say it would be a rather lean Christmas. And it was. We really didn't go too crazy, but Santa did.

So we opened gifts, then lounged, then ate, then slept, then ate, then lounged. Finally, we played Trivial Pursuit. That was the one thing I had really wanted to do this Christmas, and we did. As a matter of fact, we are still playing. I was good for about 5 rounds. We will pick it up tomorrow.

Right now, the surgery is set for Jan. 2. I think this is a tremendously long time from now and Richie was not happy to hear that date. We are hoping Dr. Chapman will be able to find time to put me in before that. We will keep everyone up to date to let you know as we find out more about these details.

Tonight the house is quiet. Charlie is on a sleepover, Madeline is working and Richie is putting a new window in Madeline's room. It is days like today that I feel the most content. I am in my favorite place in the world and all the troops are accounted for.

I'm Breaking Out!

Well, not really. I am being discharged from the hospital today. Last Friday I had a test to determine where my intestines were actually compromised. It turns out it was my small bowel and as there is no immediate danger and my doc is going to be unavailable from Dec 23-27, I can wait just as well at home as I can in the hospital. This morning will be spent working with the social worker to set up home health aides to visit me daily, check my vitals and get my daily feedbag loaded up.

I will be on a liquid diet while at home. This will really help to keep pain at a minimum and keep me more comfortable. It will also make the transition back to the hospital pretty smooth, I won't need to 'clean out' again - I will already be prepared. My doc will be arranging her schedule so that we will have a surgery date set for sometime during the week after Christmas.

Thanks so much to everyone for your offers of help, we are lucky to have such generous friends! I know that Christmas dinner is spoken for and we had just finished Christmas shopping so we are sliding in just under the tag. My best wishes to all for a safe and healthy holiday season.
Love from a very happy gal, Maggie

A Merry Christmas

This Christmas season is turning out to be a bit different than I had hoped for. I saw myself Christmas morning taking pictures of the kids as they opened gifts. I would induldge in a cup of coffee while listening to the fire crack and crinkle.

I think it is safe to say that I will probably be spending Christmas in the hospital. I was admitted on Wednesday. I have what is called a fistula or tear in my intestines. I will be having tests tomorrow to determine exactly where that tear is and then my doc will be able to formulate her game plan for fixing me up. I might even get my hernia repaired! I won't have any details until later tomorrow so I hope to put some information out there for everyone as soon as I can.

In the meantime, I am spending time reading, knitting and working on crossword puzzles. I have the computer to research more information as I get it and things are really not so bad.

Having had my first round of doxil and avastin, I should be experiencing the compromised immune system side effects over the next ten days or so, so it might be a good thing that I am being monitored so closely by the medical establishment. While I appreciate (and am flattered) that you might want to visit me, I think it would be best to keep our germs as separate as possible as this is not a time for me to pick up anything. I do not want them to postpone surgery for any reason!

My doc is encouraging the continuation of the Vit C infusions as they will help in recovery and healing. As soon as I can have food and drink again, I will be able to continue those treatments.

My gang is doing alright. This is no fun for them either but they are working hard to help out at home, get their own Christmas shopping done and have a good holiday. Please just put us in your prayers, send us your positive energy, chant for us, whatever your method is, include us in it. Things are not ideal, but we will be okay. We just keep putting one foot in front of the other and we will be okay.

A New Chemo, A New Routine

Well, the new chemo combination is doing something.

I am not sure quite what yet. I was exhausted and cranky all day Saturday, moved to grumbly on Sunday, got my first Vitamin C therapy on Monday, and tired and uncomfortable all day today. The avastin and doxil should be making me a tired for 3-5 days after infusion and the Vit C should be giving me energy. The story of my life with cancer. "If it's not one thing it's another."

I am scheduled for another Vit C session tomorrow and a follow up visit with the nurse practitioner at the oncologist's office. Hopefully, they will tell me all the cramps and associated symptoms I am having would indicate the chemo is just doing it's job. That is what I think anyway and I am sticking to it.

Darling Richie found a wood stove for our main floor this past weekend and has installed it in the living room. The house is pretty toasty for the 18 degrees it is outside and I feel warm and comfy sitting here by the fire. I can't ask for more. Madeline and Charlie are home from school, the doggies are anxiously awaiting their dinner and we just need Richie to complete the picture.

Things are okay.

The One, Two Punch

It’s official. I have not only one, but two new doctors and they are going to help me kick this cancer’s butt! (Sorry, Mom!) And here’s the really radical part of the equation, they work together! One supports the other. My head is still spinning.

Richie and I met last Wednesday with a naturopathic doctor who is working at the KU Integrative Medicine Clinic. I really liked her. I liked her manner, her directness, her depth of knowledge and her smile. I liked that she believes we can still kill the cancer! She is my kind of gal. We spoke for over an hour, she took a detailed history and ordered a huge amount of blood work done so that she can really look at my vitamin, mineral and nutritional level and devise not only a diet, but a supplement schedule that will support my immune system and help me survive not only the cancer but the chemo treatments, too!

I will also be getting IV Vitamin C therapy at this clinic – as soon as I have a couple of tests done that will tell them that not only can I take the therapy, but that it will work for me. The very basic idea behind this therapy – and this is not new stuff – is that after infusion to my blood system the Vit C or ascorbic acid will interact, twist and turn, drop a radical (or something like that) and meet my tumors with a load of oxygen that will cause the cancer cells to commit cell suicide. It makes me giddy just thinking about it!

On Thursday we met with the oncologist and I thought she was pretty tough, too. She was a nice blend of realistic and hopeful. I am a big fan of hope – it’s the best medicine, after laughter! – and she has surrounded herself with a great team. I felt a great sense of optimism after our visit. She has prescribed doxil with avastin and I begin this therapy on Friday morning. I am not exactly jumping for joy about this, but who would? I don’t want to take more chemo, but I know I must, so it’s time to put my head down and push forward. There are plenty of known side effects to both the doxil and avastin, but they are manageable. I just hope I am one of those people who doesn’t get very affected by the side effects.

So the next chapter begins and on we go.

Please know that we feel your presence in our lives. We feel your good intentions and your prayers sustain us. We really don’t need much – we have each other. This could have been a lonely, hard road. Instead it has been rough going with wonderful soft places to land when we stumble on the way. I know I have said it before, but I mean it, we are terribly lucky people in spite of the cancer.

Always hopeful,
Maggie

Thanksgiving

“Your cancer has progressed.” What ugly, scary words.

My last trip to Dr. Mutch was exactly that – my last trip. A few weeks ago, we made the decision that when the trial drug patupilone stopped working for me, I would transition to KU Med. I have an appointment with Dr. Julia Chapman in early December. She comes highly recommended, not only from Dr. Mutch, but from many in the cancer community.

Let’s take a look at the positive, shall we? I get at least two weeks break from chemo!! While it is a little scary to not have the chemo coursing through my veins and to give the tumors a chance to grow, the patupilone was really dragging me down. The next chemo is likely to do the same, but I am hoping to work with the new oncologist and the doctors at the KU Integrative Medicine Center to help me build my strength back up.

The fatigue and lack of stamina has really been overwhelming. I have been unable to get regular exercise and that in combination with the chemo leaves me without much energy for anything. I may be calling in those offers of help and rides to KC in the future!

So with Thanksgiving a day away and the sun shining, I decided I needed to focus on the positive. What am I thankful for this year? I am thankful for Richie, Madeline and Charlie. I am thankful for my wonderful family – both sides, that continue to prop me up on the good days and make me laugh on the bad days. I am thankful for all my friends who have stood by my side and encouraged me to stay strong.

Chicken Soup

I wish I knew if it was menopause, the chemo or just good deeds that make me so weepy lately.

We just received a gift of homemade chicken soup. When asked how I felt (strong until that point) I started getting teary eyed. What is it that makes this happen? Maybe it is the uncertainty of these days, the first holiday since my dad died is coming, the fact that I am only 44 years old and have cancer!

I head to St. Louis tomorrow. I have a CTscan scheduled for Tuesday and a visit with the oncologist and chemo on Wednesday. My onc wants to keep a close eye on those tumors because my numbers continue to rise, but the tumors seem to be staying the same. I don't know if I will be getting the study drug on Wednesday or something else. I have also been doing lots of research into integrative medicine. There is a belief by some in the medical community that good diet and exercise combined with supplemental support (alternative therapies) can help a cancer patient survive and lead a cancer free life. This makes sense to me and I am working on finding the right group to work with....

When the sun peeks out from behind the clouds, I feel hope return. I am really doing well considering the circumstances. And I want to thank everyone again for all you have done, have offered to do and will do when we ask in the future! Lots of love, Maggie

Election Day

Every election day since Madeline and Charlie have been in our lives, we have taken them with us to vote. We did so again this morning and Madeline remarked that she will be voting the next time we go to a national election. WOW! How time flies...

Which makes me think, I have been a cancer survivor now since July 2007. I am not feeling too well today, but I am HERE and that is a big thing. We got to do our normal routine this morning and I feel so lucky to be able to do those things. So even though I don't feel my best today, I still have today and given the circumstances I think that is a pretty wonderful thing.

Love to all and thanks for all you do for us!
Maggie

Good News is the Best News

My nurse from the oncologist's office called today with the CTscan results. There is no discernable change from the last scan. With my CA125 elevated to 1250 the last time, this is very good news. It is likely the CA125 was affected by the discomfort and irritation from the food posioning incident.

The CTscan results keep me on the patupilone course which is a good thing. Although the side effects are increasing and keeping me laying low, the patupilone keeps me from jumping back to the carboplatin/taxol regimen. Think February. If the patupilone continues to work for me, it gives me that much more time away from the nasty stuff and a better chance it will work for me next time.

We are all doing well. Madeline and Richie returned home last night from a motorcycle show in Alabama. Charlie won two trophies at a Tae Kwon Do tournament on Saturday. In spite of the cancer, we continue to live a normal life and it is important that we work toward that because this is our life.

Well, didn't Roseanne Rosanandana used to say, "If it isn't one thing, it's another."

This morning dawned just beautifully. I think. I wasn't actually awake until 8am, but it was beautiful when I woke up. Madeline was sleeping, Charlie slowly waking up, Richie making plans for a bike ride and I was enjoying reading the paper.

I took Charlie to his religious ed class and ran to the grocery store for a few things. Charlie and I were home an hour later and Madeline met us at the door. Richie had a bike accident and was at the emergency room! Ugh! When will the madness end? The good news is he will be fine. He has a couple of stitches, a badly dislocated middle finger and some scrapes and bruises.

We are all tired and trying to destress, but alive and healthy (relatively speaking.) I hope for a better week this week.
Maggie

No news is good news

I am home from St. Louis. The visit with the oncologist was a good one. No setback because of the food poisoning incident last week. There is no significant change - which is good - and although the CA125 results are not in yet, I feel good.

I have a sick child home today and she really wants her Mama to stay close and take good care of her and I am so happy to oblige.

Maggie

It's Always Something

As is life isn't interesting enough, we had another adventure last week. On Tuesday, I began to feel sick about midday. By 3pm I was in the emergency room of our local hospital with severe pain in my lower back and abdomen. After a few doses of pain medication, the pain receded but what remained was a fever of about 1o2.

After consultation between the doctor and my oncologist, it was decided that I should stay overnight. That overnight stay was eventually extended and I wasn't released until Friday morning. It turns out that I had food poisoning. I hope to never experience that again. The pain was awful and it really set me back in terms of stamina and energy. Some good things came out of the visit. I now have the ear of two area doctors, an oncologist and an internist. I really liked both of them. I also had a PICC line inserted. This is a 'peripherally inserted central catheter.' I had really been hoping to avoid having this or a port inserted. It is hard to put into words, but I felt like putting something like this in would change the face of the cancer for me. In some ways it has and in other ways it is the best thing I could have done at this time. I can have blood drawn and medicine administered without having a new IV started for each incident. In short, it will give my veins a rest.

My mom and Kaki arrived for a weekend visit on Friday and we had a wonderful time. I have spent the weekend sitting and visiting and am all the better for it. Mom and I leave tomorrow after I have blood drawn, for St. Louis. I have another chemo treatment on Wednesday at 11am and should be home by the end of the day - keep your fingers crossed and send out a prayer. There is always the chance that the oncologist might decide I am not healthy enough for the chemo.

That would make me sad.

Love to all,
Maggie

Things have been rather chaotic lately. My dad passed away almost two weeks ago, I had my fifth chemo treatment and have been to Houston for a second opinion.

My Dad died on September 12.

My fifth chemo treatment went as well as can be expected. My visit with Dr. Mutch revealed that my CA125 has dropped a bit from 942 to 837. He also feels the tumor has diminished in size. This is all very good. I am working continually to get better.

Richie and I went to MDAnderson in Houston for a second opinion appointment Tuesday. It was reassuring to hear from the doctor there that he would be following the same therapy prescription for me if I were his patient. I did not expect any different response from him and so it is good for me to know that I am at the right cancer center with the right doctor. I really like my doc, his staff and if I have to be away from my family in Lawrence, at least I am with my family in St. Louis.

So today I am feeling the beginnings of the chemo effects. I am a little tired from travel and chemo and life in general. I am not achy today (which I was last time) and I am looking forward to the weekend at home.

We are all doing well. The kids are busy with school, dance, Taw Kwon Do, drums, piano. Richie is busy at work and we have tons of projects around the house. So life is as normal as it can get with a twist or two. Thanks to everyone for the cards and good wishes.
Love,
Maggie

The dreaded chemo...

I did not sleep well last night and I am feeling a little blue. The dreaded part of my chemo cycle has arrived.

This morning's forecast called for a warm day, but rain showers and cool weather this evening. I decided to open the windows. I would have been more comfortable with them closed. It was a long, hot day. I seem to be experiencing aching joints. I also am starting in on the diarrhea so I did not try to walk this morning. The combination of diarrhea and achy joints makes me feel a bit under the weather, a little fluish.

The lack of exercise makes me antsy. I just don't feel like I have done much of anything. And the reality is I did not really do anything today. I just have to remember that that is okay.

I saw the oncologist last week. My CA125 was back up to 942. The good news is that it hasn't gone over 1000 and that was the expectation in the beginning of this chemo regimen. I believe that the 642 from last time was probably a mistake. I was reminded that this is another reason that the CA125 test is not necessarily a good single marker for ovarian cancer. The best news from the visit was that my doc believes my tumors have diminished in size.

We discussed future treatment and it is clear that I will go back on the carbo/taxol regimen at some point in the future. He will probably add avastin or another drug to the mix (ugh!), but still believes I can beat this cancer. It feels good to have him in my corner.

So even though I don't feel good today, I hope to feel better in a few days and someday I will be cancer free again. And that makes me feel better.

The Power of Love

Last night a group of family and friends got together to make some music, share some community and raise a little money for my medical expenses. It was a really incredible evening. I laughed and cried and cried some more, but they were all good tears. It was a really incredible experience, a testament to the power of community and the good people can do. I was so honored.

A few people asked that I put my speech up on this blog so that others who couldn't make it to the celebration would have a chance to know what I had to say. So here it is. My thanks again to all who came out for the evening, brought their hugs and good cheer and helped remind us of the power of love.

Good Evening everyone!

Thank you all very much for taking time from your lives, I’m sure your very busy lives, to spend the evening with my family and me. If love and good intentions could cure cancer, I would be the picture of good health.

My illness made itself known last year, and this spring we had a brief but beautiful remission. In June the doctor told us about the return of the cancer. Richie, Madeline, Charlie and I talked about our new reality. We choose to look at this as a chronic illness. I don’t like the word cancer – too many negative connotations, and I can live with an ‘illness.’ And I still feel lucky. My legs still work, my arms work and my head still works. And as Jane reminded me, my heart still works too! And tonight it is very evident my heart is working! It is about to burst.

I can’t talk without talking about ovarian cancer, which is called the silent killer. Because ovarian cancer presents few early warning signs, most patients are diagnosed when the cancer has reached an advanced stage. Some of the early symptoms of ovarian cancer are associated with less threatening ailments such as gastrointestinal or urinary tract disorders. Any of these symptoms that are manifested daily and remain for a few weeks should be a signal for a woman to see her gynecologist immediately.

Every year in the US over 25,000 women are diagnosed with ovarian cancer, and 14,000 women die from this deadly disease this year. In Kansas in 2004, approximately 360 women were diagnosed with ovarian cancer and about 300 women died. These are alarming numbers and unless all women are aware of ovarian cancer symptoms, the cancer will continue to burden women and their families for years to come.

I brought some information tonight (you can find it on the table near the entrance) and I encourage you to take a pamphlet or two, maybe a bookmark or bracelet. Read the symptoms of the disease and pay close attention to your health. There is no definitive test now for diagnosis, but by being aware of the symptoms and staying connected to your own health, maybe you can save yourself from this disease.

In regards to my own health, I am doing relatively well considering the circumstances. I am responding to the current chemotherapy, and my CA125 number, the marker for ovarian cancer activity, is going down! Generally, I feel pretty well for a gal with a chronic illness. I am tired from the chemotherapy, but I am always hopeful. I imagine I will have periods of active disease, which will mean chemotherapy, and then remission in my future.

And I have been unbelievably honored since the beginning of this journey to be witness as so many people have offered help, brought meals to our house, given extra hugs to Madeline and Charlie, mowed the lawn, donated money to help with the medical bills and smiled at me on the streets of Lawrence. It has been a humbling experience. I never knew how many friends we had. I know Richie and I are nice people, but never did I see us deserving this kind of response from people desiring to help our family.

Richie and I have said since July of last year, “It is what it is…” - we can’t change yesterday and we don’t know what tomorrow will bring, but we do have today. Today I would not want to be any place but here amongst my friends, and I feel unbelievably lucky to have all of you in my life. Thank you all from the whole of my heart.

Guarded Optimism

Wednesday was a long day. I woke up at 4:30am to catch a 7am flight to St. Louis. My brother John picked me up and I had an 11am appointment at Barnes. Before I knew it, I was on my way back to Kansas City. After a long, long day it was wonderful to pull up to the house at 6:45pm and see Richie’s smiling face!

The chemo treatments are going well. I was told to expect my CA125 rise again before I would see any drop in the number. To my utter surprise, the number has dropped. I had a drop of almost 300 points, to 642. I keep trying to remember that this is just a diagnostic tool, I don’t want to put too much weight on it, but it does mean something. A drop means the chemo is working and my body is responding. RELIEF!!

I am feeling good, no nausea this time, and I am hoping this continues. I think the future looks bright again and I am excited to face the day.

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.

Another try....

Where to begin?

I began my second round of chemo treatments yesterday. I am participating in a research study for a new drug called patupilone. I had a 50/50 chance of receiving the new drug or another one called Doxil. The study is in phase III and is to determine the benefits/drawbacks of side effects for both drugs.

I was excited to learn Wednesday that I would be receiving the patupilone. Doxil has the typical chemo side effects, including nausea, vomiting, neuropathy and reddening of hands and feet. The patupilone's main side effect is diarrhea. Typically, I should begin to feel the effects within 24 hours, but more likely it will take 7-9 days after the initial infusion.

I will be traveling to St. Louis every three weeks for the infusion, and will be able travel there and back in the same day! This will do wonders for us. We are determined to keep our home life as normal as possible and this will really help.

It is important to remember that I may never be 'cured' of this cancer, but rather, it can be managed and I can have a very happy and fulfilling life in spite of it. And that is important. I am alive now and continue to thrive.

Stop and Smell the River?

Stop and smell the roses. Such a trite line, but one that came to mind today. Richie and I rode our bike to the Farmers Market, a lovely habit we have formed over the last few years. Saturday mornings take on this lazy, happy quality that ease us out of the work week and into the weekend.

On our way home, we saw a blue heron on the dam. It was standing still, so quiet. We decided to stop. As we watched the bird, we noticed first one, then two fish fighting their way up the dam. Then we spied a turtle slowly plodding against a strong current.

I rarely take the time to notice these happenings. There is life all around me. There is good all around me. Stop and smell the roses, or the Kaw river water. Either way it was a beautiful moment in time.

Cancer Rears its Ugly Head...

I am headed to chemotherapy next week. The cancer has returned. I am hopeful this next phase of my treatment will contain the growth and possibly even get rid of all the cancer.

We found on yesterday, June 18. It was not a good day. Lots of tears, a few laughs, a couple of glasses of wine and we have arrived at day one. I know I can survive this, it is a big bump in the road, but I am strong and determined.

I will be participating in a research study and will have more information regarding that next week. Keep me in your thoughts and prayers, I will do the same for you. And give my babies and Richie some extra special care when you see them...they really need it.

Moving Forward

Good news! I am going to St. Louis next week for another CA125 and CTscan. I asked the doc this morning if any of my symptoms indicated a return of the cancer. Not necessarily, he said. I don't care either way. Just for today, I get to thing about this just as a hernia problem and not as a cancer problem. I like that. I am going to hold on to it all day long as I sit on my couch, knit and watch bad television.

Hernia, schmernia...

When I had the 'second half of my hysterectomy' surgery in December, I had a few complications. I had a not so nice nurse, reactions to medication and multiple infections in my wound. I was sent home with a machine called a 'wound-vac' which was supposed to cut my healing time down tremendously. It did cut the healing time down, but it was a painful and laborious process to change the dressings. This had to be done every other day and was not something I looked forward to. And I later found out that using the wound vac increased my chances of having hernias.

I told my husband that if anyone ever suggested abdominal surgery again, I was not going to do it. Fast forward a few months, I found out I had surgical hernias, two of them. I was not happy with this bit of news, although it was better than cancer. So, the repair of the hernias is imminent, it should be done sometime this summer and I am hoping for a better outcome in terms of complications.

So far I have not had any symptoms from the hernias - other than looking a few months pregnant - until last night. I am pretty sure the back and abdominal pain, nausea and slight constipation I starting experencing are not a good sign. Let's hope we don't have another emergency surgery situation. Those are no fun....

And let's hope the surgeon can get me in sooner rather than later...

She's Coming Home!

My husband's family has a tradition/history of private study abroad with a family in Poland. Our 14 year old daughter left on March 3 to spend some time there, learn the language, have an experience, etc. Tonight at 6:30pm she will return. I couldn't sleep last night I was so excited.

I have missed her terribly, it felt like a physical part of me was missing. She is a delight and any of you who know me, her or any one in my family know that she is a true treasure. I cannot wait to hold her in my arms again and touch her beautiful face! Sheer joy.

Take a deep breath...

Since my cancer diagnosis in July 2007, my mantra has been, "It is what it is." I hope my meaning is clear, but for anyone who doesn't understand...this cancer is what it is. I cannot do much to change it. I can adopt a healthier lifestyle, make better choices in what I put in and on my body, but I cannot change the diagnosis. I must accept the fact that I have cancer.

In order to continue to live my life, I need to be positive. The slippery slope of depression is very attractive in some respects. I can easily see myself languishing in self pity, but I am choosing not to live that way. I have always been a 'glass half full' kind of person and I will continue to be that way.

This said, my latest visit to the oncologist causes me to pause and take a deep breath. My CA125 is back up again. The July 2007 levels were at about 800 and after eight (yep, count 'em, EIGHT!) I was down to 15. Those were good days, days of celebration. This time, though, I am back up to 150. What the hell is going on?

It could be the two hernias that now grace my abdomen or it could be....CANCER. A return of the dreaded cancer. Patience is required and this is something I have very little of, although I do believe I am getting better at taking that deep breath. What else am I going to do?