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
Monday, December 29, 2008
Friday, December 26, 2008
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 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.
Monday, December 22, 2008
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
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
Thursday, December 18, 2008
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.
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.
Tuesday, December 16, 2008
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.
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.
Wednesday, December 10, 2008
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
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
Subscribe to:
Posts (Atom)