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
Monday, October 13, 2008
Thursday, October 9, 2008
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
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
Monday, October 6, 2008
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
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
Thursday, September 25, 2008
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
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
Wednesday, September 3, 2008
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.
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.
Monday, August 18, 2008
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.
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.
Saturday, August 9, 2008
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.
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.
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