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.
Thursday, December 18, 2008
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
Wednesday, November 26, 2008
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.
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.
Monday, November 17, 2008
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
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
Tuesday, November 4, 2008
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
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
Tuesday, October 21, 2008
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.
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.
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