So far, so good.... This time last year, I was in the hospital with low blood counts and an infection called Pseudomonas... I was on IV antibiotics for a month.... was taken off a chemotherapy (Carboplatin) because my blood counts were too low, only to find out later that it is THE drug that researchers believe really kicks my cancer's butt.... I hadn't had any scans or follow up tests, so the question of whether the cancer had spread was first and foremost in my mind.
That was a year ago.
Today, life has done a complete 360: all of my scans and tests this summer showed NED (No Evidence of Disease). My blood counts are on the low end of a normal scale, but they are holding their own and doctors aren't even suggesting transfusions anymore. And although I get tired, it is not the "cancer fatigue" that I remember from my days of pre-diagnosis. I suspect it is an after-affect of treatment kind of tired and even (dare I say it?) a tiredness related to simply getting older.
It could all change in a moment -- I know that. When I start to worry, I work hard to remind myself that everything is fine now and to enjoy the moment. Self-talk, as they call it. I have tests coming up (an MRI on 10/26 and mammogram on 11/3). That always increases the anxiety, but I honestly am hopeful for good news from both tests. The greatest health issues before me are how to lose weight... how to MAKE time for daily walks and quiet time. And, can I please find someone to come and SHOVEL OUT MY HOUSE. One thing people don't realize about cancer treatment is that your life stops, but the accumulation of stuff by your kids and spouse does not.... :-) (Yes, I'm guilty too.... )
My heart breaks for people and families who have a recent diagnosis. I try to listen and encourage and help all that I can. But I also accept that for whatever reason, this is God's best for them in the moment. It doesn't feel that way at the time, but as time passes and you look back, you are blessed if you can find His footprints in your walk. Cancer brings a new normal, and it brings constant challenges/decisions. But, it can also bring His blessing if you let Him know how you are hurting. God cannot comfort you if you will not open the door to Him.
Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28
Tuesday, October 13, 2009
Sunday, July 19, 2009
Relay for Life 2009
Yesterday was Midland's Relay for Life -- what fun! I'm blessed with a friend in our church who puts her heart and soul into creating a booth for the event every year. She and her large circle of friends put together the BEST booth in the whole event -- quality food, attractive theme for the booth, and lots of warmth and love! I had planned to work a good part of the day, either selling food or walking laps. But, Sharon was gracious to let me just enjoy the day. Liam and I were there on our own, as this is the weekend that Paul and the older boys left for the scouting trip to Philmont. We spent too much money on cheap games, but also participated in the survivor's lap, the care giver's lap and the luminary ceremony. And, it was sweet of Rich to dedicate his walk as "Miss Relay" to me and another neighbor Sue who fought breast cancer this spring. He was a great Miss Relay, and took the prize again this year!
I've done three Komen walks already, but Relay is really a special event. It is very laid back with good music and a strong positive spirit through out the day. I enjoyed spending the day with friends, and just being together. The luminary ceremony at the end of the day is great. Presentations are given at the grand stand, luminaries are lit around the relay track, and then everyone walks around the track, silently, with candles lit. It is touching in a way very unique to Relay.
My birthday was on Friday.... a busy day since Paul and the boys were getting ready to go on their trip. And we could not go out as a family because Paul is still starving (I mean, dieting) himself into oblivion....
Dad's birthday is today.... I still need to call him.... (sheepish grin).
I've done three Komen walks already, but Relay is really a special event. It is very laid back with good music and a strong positive spirit through out the day. I enjoyed spending the day with friends, and just being together. The luminary ceremony at the end of the day is great. Presentations are given at the grand stand, luminaries are lit around the relay track, and then everyone walks around the track, silently, with candles lit. It is touching in a way very unique to Relay.
My birthday was on Friday.... a busy day since Paul and the boys were getting ready to go on their trip. And we could not go out as a family because Paul is still starving (I mean, dieting) himself into oblivion....
Dad's birthday is today.... I still need to call him.... (sheepish grin).
Sunday, July 12, 2009
Follow-Up With Oncologist -- Pretty Good News
Friday was a whirlwind day. Paul, Shane, Liam and I left the house around 8:30 a.m. to drive to Ann Arbor for a walking tour of University of Michigan. Tyler would have appreciated seeing UofM, but he stayed home to take care of our boston terrier. I think he also appreciated the quiet house all to himself! :-)
The walking tour was a good experience. Shane is not sure the college is for him -- perhaps it is too urban and too big? He said his original plan was to apply at UofM (as well as Michigan Tech and others), and to go to UofM if he was accepted -- no matter what. After seeing the campus, he is not so sure anymore. We suggested that he apply... if is he accepted, he can go through the engineering tour and then make a final decision.
Next we made a quick stop for lunch, an unplanned stop at the REI Camping/Outdoors store, and then finally to my oncologist's office. The nurses there were so nice -- talking about how good I look since they saw me in January... a real boost to my ego! :-)
My blood work was fine... My white blood counts are still low, but my overall "composite" number that is used to evaluate my "infection fighting ability" is within normal range. The doctor is happy, so I am happy.
Doc wants me to have the follow-up MRI, but he doesn't anticipate a problem; concurs with radiologist's opinion that differences/concerns are related to scar tissue and surgery.
He wants me to also have a mammogram in October. Said that he just had a tumor board meeting that morning, and a woman had breast cancer detected by her mammogram that was missed on the MRI. Message to all the women --> mammograms are important! Don't put them off, no matter what you read in the media!
And, doc wants me to have the pelvic ultrasound again. He suggests having my ovaries removed if they are still larger than the ultrasound a few weeks ago. He said this as quickly and as casually as one might suggest throwing out an old pair of shoes?
So, between now and Christmas, I have three medical exams, three doctors appointments, and potentially a surgery. Paul's sister has heard of a homeopathic doctor near Detroit -- I think it is time to see him, as well. The medical doctors have saved my life; maybe another doctor can help save what's left of my body?? It is worth a shot...
After the doctor's visit, we visited quickly with Paul's parents, stopped at Trader Joe's, and then finally came home. We were home about 10:00 p.m. -- it was a long day!
But, I am not complaining! I am full of joy to go on a college tour with my son AND to get good news from my oncologist.
Life is good!
I have felt better in the past few weeks then I have felt in years -- the overall feeling of fatigue is gone. Thursday night, Paul and I rode bikes for over an hour on the rail trail. I am bouncing back, and getting healthier. I am working on losing weight, and getting healthier.
There is life after cancer.
Amen and amen!
The walking tour was a good experience. Shane is not sure the college is for him -- perhaps it is too urban and too big? He said his original plan was to apply at UofM (as well as Michigan Tech and others), and to go to UofM if he was accepted -- no matter what. After seeing the campus, he is not so sure anymore. We suggested that he apply... if is he accepted, he can go through the engineering tour and then make a final decision.
Next we made a quick stop for lunch, an unplanned stop at the REI Camping/Outdoors store, and then finally to my oncologist's office. The nurses there were so nice -- talking about how good I look since they saw me in January... a real boost to my ego! :-)
My blood work was fine... My white blood counts are still low, but my overall "composite" number that is used to evaluate my "infection fighting ability" is within normal range. The doctor is happy, so I am happy.
Doc wants me to have the follow-up MRI, but he doesn't anticipate a problem; concurs with radiologist's opinion that differences/concerns are related to scar tissue and surgery.
He wants me to also have a mammogram in October. Said that he just had a tumor board meeting that morning, and a woman had breast cancer detected by her mammogram that was missed on the MRI. Message to all the women --> mammograms are important! Don't put them off, no matter what you read in the media!
And, doc wants me to have the pelvic ultrasound again. He suggests having my ovaries removed if they are still larger than the ultrasound a few weeks ago. He said this as quickly and as casually as one might suggest throwing out an old pair of shoes?
So, between now and Christmas, I have three medical exams, three doctors appointments, and potentially a surgery. Paul's sister has heard of a homeopathic doctor near Detroit -- I think it is time to see him, as well. The medical doctors have saved my life; maybe another doctor can help save what's left of my body?? It is worth a shot...
After the doctor's visit, we visited quickly with Paul's parents, stopped at Trader Joe's, and then finally came home. We were home about 10:00 p.m. -- it was a long day!
But, I am not complaining! I am full of joy to go on a college tour with my son AND to get good news from my oncologist.
Life is good!
I have felt better in the past few weeks then I have felt in years -- the overall feeling of fatigue is gone. Thursday night, Paul and I rode bikes for over an hour on the rail trail. I am bouncing back, and getting healthier. I am working on losing weight, and getting healthier.
There is life after cancer.
Amen and amen!
Wednesday, July 1, 2009
News You Can Use
From the Susan G. Komen website: results from two studies that will perhaps change the way breast cancer (and other female cancers) is treated?
Thursday, June 11, 2009
Consistently Good News
Since my ultrasound about ten days ago, I've talked to two OB/GYN docs and two oncologists -- all four agree that my ultrasound does not indicate any signs of cancer, and that doing a follow-up scan in 2 months is very reasonable.
Big sigh of relief....
Just started reading Gail Konop Baker's Cancer is a Bitch (Or, I'd Rather Be Having a Mid-Life Crisis). It is a hoot! And very real to how I felt in many respects when I was first dx'd. She is a talented writer. Just beaware, she uses some raw language. But, raw is how you feel when cancer is introduced into your life...
Big sigh of relief....
Just started reading Gail Konop Baker's Cancer is a Bitch (Or, I'd Rather Be Having a Mid-Life Crisis). It is a hoot! And very real to how I felt in many respects when I was first dx'd. She is a talented writer. Just beaware, she uses some raw language. But, raw is how you feel when cancer is introduced into your life...
Wednesday, June 3, 2009
How Much Info is Too Much Info?
Well, I talked to my doctor this morning. Actually, not my doctor, but his colleague because my doc was not in the office until the afternoon. But, my doc delivered my first son 16 years ago, and his colleague delivered our second and third sons -- I have a long history with both docs, and appreciate/trust either of their input.
The results of my pelvic ultrasound are inconclusive. The doctor didn't use that word, but that is the result. I have a "simple cyst" on my left ovary, and the lining of my uterus is a bit thicker than normal. These are things that happen on a regular basis when women ovulate, go through menopause, eat chocolate... (no, that last bit was really a joke! couldn't resist... )
But the point is that the findings of the pelvic ultrasound could imply a problem, or they could be completely normal for me.
My doc wants to have another pelvic ultrasound in 2 months to check for changes, good or bad. The other option is to have a surgical biopsy, which honestly, I am not up for at the moment. It seems like an over reaction to what might be a very benign situation, even with my history of cancer --> I had a cyst two years ago when they did a CT scan, it was gone this spring when they did another CT scan, and now it is back again. They come and they go.
Two doctors in my OB/GYN office will review my report... I have two oncologist (one local, one at a large hospital down state), and my surgical oncologist. I will fax copies of the report to all of them, and follow up -- if anyone ONE of them suggests a specialist (gynecological oncologist, or surgery) then I will not ignore that. Otherwise, I will have the second ultrasound in 2 months and let it all stay securely in God's hands.
The results of my pelvic ultrasound are inconclusive. The doctor didn't use that word, but that is the result. I have a "simple cyst" on my left ovary, and the lining of my uterus is a bit thicker than normal. These are things that happen on a regular basis when women ovulate, go through menopause, eat chocolate... (no, that last bit was really a joke! couldn't resist... )
But the point is that the findings of the pelvic ultrasound could imply a problem, or they could be completely normal for me.
My doc wants to have another pelvic ultrasound in 2 months to check for changes, good or bad. The other option is to have a surgical biopsy, which honestly, I am not up for at the moment. It seems like an over reaction to what might be a very benign situation, even with my history of cancer --> I had a cyst two years ago when they did a CT scan, it was gone this spring when they did another CT scan, and now it is back again. They come and they go.
Two doctors in my OB/GYN office will review my report... I have two oncologist (one local, one at a large hospital down state), and my surgical oncologist. I will fax copies of the report to all of them, and follow up -- if anyone ONE of them suggests a specialist (gynecological oncologist, or surgery) then I will not ignore that. Otherwise, I will have the second ultrasound in 2 months and let it all stay securely in God's hands.
Monday, June 1, 2009
A Surreal Day....
This morning I was a normal mom...
... and I went to work at the library.
Afterward, I went to the hospital to have my medi-port flushed -- something I have to do every 4-6 weeks to keep the tubing from being clogged....
... and then, I had my pelvic ultrasound. "Invasive" is the only description I'll give. Now or ever....
Afterward, I went home to make dinner, drive to Liam's baseball game, and then to church for a meeting.
How surreal is my life that cancer and its treatments just network their way into my daily routine? As routinely as some people go to the grocery store, I go to the hospital. This existence is true for everyone who has a chronic illness, but it is especially unsettling to me. Friends and family consider my cancer treatment to be over; they have moved on and believe that I can/have, too. But, cancer is a shadow over most of my days. Some days emotionally or mentally. Today, physically.
The ultrasound was more unnerving today than I had anticipated. The technician was all business, and gave no impression one way or the other about what she saw. Even bad news would have been reassuring -- the not knowing is very hard.
I will not write about what I think the outcome will be, or how I feel physically (and hence, imply what the outcome will be). I've learned that a cancer diagnosis is not dependent upon how a person feels or looks. That is partly why it is such a sneaky, despicable disease -- it preys upon people in the fullness of their life.
No, you will just have to wait for the results, as will I. Hope and pray that they are conclusively benign. A cancer decision would be devastating. An inconclusive result will mean more tests, more time, and more worry.
When people talk about "fighting" cancer, I believe they are talking about the folks who have gone through the disease multiple times or who are incurable. I don't mean any disrespect to the "one timers" of cancer, but that can honestly be an easy fight. The treatment is terrible, but if the outcome is certain and binding, the ordeal for the person is over.
But to address the disease multiple times... or to know that it will ultimately be the reason you die, prematurely... Well, that is where the fight is most necessary. It is a physical fight because the disease drains of you energy and the treatment takes whatever is left over. And it is an emotional fight because it just mentally punches you and beats you down over and over and over and over again.... It does not fight fair. It is hard to have to have energy to even care to fight the disease.
It always seems to win, so why try?
But we must try, or not go on. That is where the support of family and friends and faith become so important. When we cannot go on... cannot endure another test or another treatment... do not care anymore whether we "beat" the disease or not....
That is when we need family and friends and faith to care for us. To fight for us. To encourage us and lift us up. To care when we are physically and emotionally spent, and no longer give a damn. That is the point at which a cancer patient must "fight."
God willing, my test results will be benign. Only time will tell...
... and I went to work at the library.
Afterward, I went to the hospital to have my medi-port flushed -- something I have to do every 4-6 weeks to keep the tubing from being clogged....
... and then, I had my pelvic ultrasound. "Invasive" is the only description I'll give. Now or ever....
Afterward, I went home to make dinner, drive to Liam's baseball game, and then to church for a meeting.
How surreal is my life that cancer and its treatments just network their way into my daily routine? As routinely as some people go to the grocery store, I go to the hospital. This existence is true for everyone who has a chronic illness, but it is especially unsettling to me. Friends and family consider my cancer treatment to be over; they have moved on and believe that I can/have, too. But, cancer is a shadow over most of my days. Some days emotionally or mentally. Today, physically.
The ultrasound was more unnerving today than I had anticipated. The technician was all business, and gave no impression one way or the other about what she saw. Even bad news would have been reassuring -- the not knowing is very hard.
I will not write about what I think the outcome will be, or how I feel physically (and hence, imply what the outcome will be). I've learned that a cancer diagnosis is not dependent upon how a person feels or looks. That is partly why it is such a sneaky, despicable disease -- it preys upon people in the fullness of their life.
No, you will just have to wait for the results, as will I. Hope and pray that they are conclusively benign. A cancer decision would be devastating. An inconclusive result will mean more tests, more time, and more worry.
When people talk about "fighting" cancer, I believe they are talking about the folks who have gone through the disease multiple times or who are incurable. I don't mean any disrespect to the "one timers" of cancer, but that can honestly be an easy fight. The treatment is terrible, but if the outcome is certain and binding, the ordeal for the person is over.
But to address the disease multiple times... or to know that it will ultimately be the reason you die, prematurely... Well, that is where the fight is most necessary. It is a physical fight because the disease drains of you energy and the treatment takes whatever is left over. And it is an emotional fight because it just mentally punches you and beats you down over and over and over and over again.... It does not fight fair. It is hard to have to have energy to even care to fight the disease.
It always seems to win, so why try?
But we must try, or not go on. That is where the support of family and friends and faith become so important. When we cannot go on... cannot endure another test or another treatment... do not care anymore whether we "beat" the disease or not....
That is when we need family and friends and faith to care for us. To fight for us. To encourage us and lift us up. To care when we are physically and emotionally spent, and no longer give a damn. That is the point at which a cancer patient must "fight."
God willing, my test results will be benign. Only time will tell...
Saturday, May 30, 2009
Detroit Race for the Cure
Well, we had a beautiful day for our walk! The weather was just right for walking -- not too cold or too hot. The race was CROWDED -- I don't know how many attended, but I heard something along the lines of 50,000 people, and that this was the biggest race Detroit has ever had! Liam really enjoyed all the "bling" of the day -- he wore the pink hat, two scarves, a pink cape and a couple of hat buttons that were handed out for free. He held my hand during almost the entire race. I think he and Tyler enjoyed the day the most? Although Karen commented later in the day that it was so inspiring because of all the positive energy -- that many people "celebrating" and remembering loved ones creates a lot of good feelings all around. After the race, we went to Greek town. The highlight of the meal was flaming cheese -- a thick, breaded slice of white cheese, doused with brandy and then lit on fire. Oh-pah!
After Greek Town, we came back to Karen and Scott's house where we all relaxed, and had dinner with Paul's parents and sister, Linda. We are now watching the Tigers game, and will soon watch the Red Wings. A good day all around!
I doubt we will walk the race in the future as a whole family again (?), but I am thankful that we go to do it today. It is affirming to share something positive about breast cancer -- the disease takes such a toll on our lives, otherwise. This is an experience that my family will has shared with good memories -- something to look back on in years to come as a milestone in my cancer journey. It ain't all about chemo appointments, you know!
Thursday, May 28, 2009
Random Thoughts....
Today I had my very first pedicure. First one ever. I highly recommend it -- it is very relaxing, and the results are instantaneous and beautiful! A perfect American indulgence. And, it is wonderful to see that towel warmers are being put to excellent use outside of the hospital setting! :-)
As well as treating myself, I had my annual check up with my OB/GYN. I say "annual" even though I hadn't been to him since 2005. That was a pre-cancer check up, you see. Bad news today.... one of my ovaries is swollen, and my doc has ordered an ultrasound. He swears he is just being cautious "because of my history." I hate that phrase.... "because of your history." The ultrasound is on Monday. I'll probably have the results back by Wednesday...
Saturday is our Komen walk in Detroit.... hopefully the weather will warm up and we will have a good day? We're due....
I've been reading Resilience by Elizabeth Edwards. It is probably the best book I've read about breast cancer in a long time. And, believe me, I've read a lot of them!
Eating and dieting is going POORLY. The more I think about food the more (bad) food I eat. I read once doing something like that (i.e. eating terribly when you know your health requires you to eat much better!) is a symptom of repressed denial -- a person denies that he or she has a real health issue, and that he or she must eat healthier than others. Every bit of chocolate and fast food is a repressed denial of my real health issues.
Denial. I'll wear that badge for a while. Tomorrow though, I have to get my act together....
Assuming that my ultrasound on Monday does not show up something really nasty. Then I'll just eat myself into oblivion.
Random thoughts....
As well as treating myself, I had my annual check up with my OB/GYN. I say "annual" even though I hadn't been to him since 2005. That was a pre-cancer check up, you see. Bad news today.... one of my ovaries is swollen, and my doc has ordered an ultrasound. He swears he is just being cautious "because of my history." I hate that phrase.... "because of your history." The ultrasound is on Monday. I'll probably have the results back by Wednesday...
Saturday is our Komen walk in Detroit.... hopefully the weather will warm up and we will have a good day? We're due....
I've been reading Resilience by Elizabeth Edwards. It is probably the best book I've read about breast cancer in a long time. And, believe me, I've read a lot of them!
Eating and dieting is going POORLY. The more I think about food the more (bad) food I eat. I read once doing something like that (i.e. eating terribly when you know your health requires you to eat much better!) is a symptom of repressed denial -- a person denies that he or she has a real health issue, and that he or she must eat healthier than others. Every bit of chocolate and fast food is a repressed denial of my real health issues.
Denial. I'll wear that badge for a while. Tomorrow though, I have to get my act together....
Assuming that my ultrasound on Monday does not show up something really nasty. Then I'll just eat myself into oblivion.
Random thoughts....
Tuesday, May 12, 2009
Tiger's Baseball Game
We recently received a very nice surprise, in regards to the Komen race that we'll be walking in later this month. About two weeks ago I received an email saying that breast cancer survivors walking in the Detroit race were eligible for four free tickets to the Detroit Tigers game on May 17.
The first thing I did was check my work schedule -- lo and behold, I was not scheduled to work that day. And then I replied back to the email -- thanking them, explaining that my nine year old is over the moon! about sports, and particularly baseball, BUT that we have five people in our family not four. Could we possibly have five tickets.
Yesterday, all five tickets arrived in the mail, with a nice letter from the Tigers and Komen Foundation -- what a wonderful surprise! I did not tell Liam about the game until I had the tickets, and he was thrilled! The older two boys kind of mumbled a "great" when I told them, but, they'll go and they'll have a good time. I hope!
The past couple of days I've been cleaning closets and hidden places of my house trying to find things for our church rummage sale. The problem is not finding things -- when you put your life on hold to fight something like cancer for two years, things accumulate! -- the problem is getting it all organized, and keeping myself and my house sane in the process.
It has been a stressful process -- trying to get it "all" ready for the sale on Saturday. Now, I've resolved myself to getting as much ready as possible, and giving myself permission to give the rest to Salvation Army as I find time to get around the remaining closets, boxes, etc.
But I have a real need to purge, clean out.... When I was first diagnosed almost three years ago, I looked around my house at all the piles of papers and things. It was an "organization" system that I understood, but which I knew no one else would be able to muddle through. I immediately started to organize things -- I didn't want to die with all the lose ends and confusion left in my memory.
Now, I'm a bit more relaxed, and not worried about dying...
But I still feel this huge burden to get my life "together." To get rid of all the extra "stuff" in our lives, and to simplify so that we can move from season to season, event to event, andeven, if necessary again, from crisis to crisis, without being overwhelmed by the stuff and busy-ness of our lives. I guess, I want CONTROL, and purging my house feels like one angle of control.
Another area of my life I want to get a better handle on is my eating. I heard a cancer conference, specifically for triple negative, that discussed a low fat diet being crucial to avoiding a breast cancer recurrence. Especially in the case of trip-neg cancers. The WINS Study had something like 20-25 grams of fat per day targeted for these ladies. The reality was that the ladies could manage about 30-33 grams of fat per day, and this was still enough to show a positive impact on reducing recurrence.
I found an on-line tool -- My Daily Plate -- on www.livestrong.com. It is free... it has restaurant foods... generic foods... and it calculates calories, fat, sodium, etc. It is wonderful!
It has also taught me that my eating habits (which I thought were at least decent) are horrible! Fat, sodium, blind calories! It has been a real eye opener for me.
But, I'm going to stick with it, and be honest about it. Next week I have an appointment with a dietitian, and I'll take my food diary to her. Maybe she can help me, help me?
Lastly, I had an MRI last Monday. On Friday the radiologist who read the MRI called me. Never a good sign. But, she assured me all is "probably" fine. She needed to update her records RE: my surgical history. A lot has changed since my last MRI, only a year ago. She said she felt comfortable things were fine, but she wants another MRI in 6 months to compare. Then she wished me a Happy Mother's Day, and I went to find the chocolate ice cream! (This was before I found the livestrong website, so I don't think it counts!??).
Time to walk the dog, and then get back to my closet cleaning... I don't know WHAT we'll have for dinner tonight? Paul is gone, I have to work this evening, and haven't made any time to cook. Maybe breakfast for dinner... ?
The first thing I did was check my work schedule -- lo and behold, I was not scheduled to work that day. And then I replied back to the email -- thanking them, explaining that my nine year old is over the moon! about sports, and particularly baseball, BUT that we have five people in our family not four. Could we possibly have five tickets.
Yesterday, all five tickets arrived in the mail, with a nice letter from the Tigers and Komen Foundation -- what a wonderful surprise! I did not tell Liam about the game until I had the tickets, and he was thrilled! The older two boys kind of mumbled a "great" when I told them, but, they'll go and they'll have a good time. I hope!
The past couple of days I've been cleaning closets and hidden places of my house trying to find things for our church rummage sale. The problem is not finding things -- when you put your life on hold to fight something like cancer for two years, things accumulate! -- the problem is getting it all organized, and keeping myself and my house sane in the process.
It has been a stressful process -- trying to get it "all" ready for the sale on Saturday. Now, I've resolved myself to getting as much ready as possible, and giving myself permission to give the rest to Salvation Army as I find time to get around the remaining closets, boxes, etc.
But I have a real need to purge, clean out.... When I was first diagnosed almost three years ago, I looked around my house at all the piles of papers and things. It was an "organization" system that I understood, but which I knew no one else would be able to muddle through. I immediately started to organize things -- I didn't want to die with all the lose ends and confusion left in my memory.
Now, I'm a bit more relaxed, and not worried about dying...
But I still feel this huge burden to get my life "together." To get rid of all the extra "stuff" in our lives, and to simplify so that we can move from season to season, event to event, andeven, if necessary again, from crisis to crisis, without being overwhelmed by the stuff and busy-ness of our lives. I guess, I want CONTROL, and purging my house feels like one angle of control.
Another area of my life I want to get a better handle on is my eating. I heard a cancer conference, specifically for triple negative, that discussed a low fat diet being crucial to avoiding a breast cancer recurrence. Especially in the case of trip-neg cancers. The WINS Study had something like 20-25 grams of fat per day targeted for these ladies. The reality was that the ladies could manage about 30-33 grams of fat per day, and this was still enough to show a positive impact on reducing recurrence.
I found an on-line tool -- My Daily Plate -- on www.livestrong.com. It is free... it has restaurant foods... generic foods... and it calculates calories, fat, sodium, etc. It is wonderful!
It has also taught me that my eating habits (which I thought were at least decent) are horrible! Fat, sodium, blind calories! It has been a real eye opener for me.
But, I'm going to stick with it, and be honest about it. Next week I have an appointment with a dietitian, and I'll take my food diary to her. Maybe she can help me, help me?
Lastly, I had an MRI last Monday. On Friday the radiologist who read the MRI called me. Never a good sign. But, she assured me all is "probably" fine. She needed to update her records RE: my surgical history. A lot has changed since my last MRI, only a year ago. She said she felt comfortable things were fine, but she wants another MRI in 6 months to compare. Then she wished me a Happy Mother's Day, and I went to find the chocolate ice cream! (This was before I found the livestrong website, so I don't think it counts!??).
Time to walk the dog, and then get back to my closet cleaning... I don't know WHAT we'll have for dinner tonight? Paul is gone, I have to work this evening, and haven't made any time to cook. Maybe breakfast for dinner... ?
Wednesday, April 29, 2009
Detroit "Race for the Cure" -- It's a Family Thing!
From the first day of my cancer diagnosis, I said that cancer is a "family" illness. One person is sick, but everyone is affected. For good and for bad.
My cancer journey, since September 2006, has been such a series of ups and downs. One bright spot was walking in the Indianapolis Komen race with my mom and three sisters in April 2008. I drove 7 hours to get to Indianapolis and to walk the 3K race -- even though I had been diagnosed with a recurrence of my breast cancer only a few weeks prior.
Trust me, I considered not going to the race at all. No one would have blamed me, given the circumstances. But that race day was thrilling for me -- to see cancer survivors lined up by year of survivorship. Some had survived 25+ years! To walk through the "survivor's parade," and see the look on my mom's face... a mixture of worry, hope, love and encouragement. A mother's look.
I decided that day that my family in Michigan needed to have a day like this -- to see the number of survivors, to feel the support and encouragement of so many others who have been touched -- for good and for bad -- by cancer.
On Saturday, May 30, my family will have that day. We will walk in the Komen Race in Detroit: Paul, myself, Shane, Tyler, Liam, my sister-in-law Karen and her husband Scott. It is a family affair. Just like the day of my diagnosis. But May 30 will be a day for reflection. For looking back, and most assuredly for looking FORWARD.
Susan G. Komen is a name that many people recognize as a leader in cancer research and funding. It has that recognition for good reason -- the foundation has invested more than $1 billion in breast cancer education and research since it beginning in 1982. But what many people do not know is that the foundation was started in Susan's name by her younger sister, Nancy G. Brinker. During Susan's fight with breast cancer, she focused her thoughts on making life better for other women battling breast cancer. Nancy vowed to carry forward Susan's legacy, and thus the Susan G. Komen Foundation was born. From the love of a sister. A family thing.
We would be honored if you would sponsor one (or several) of us in this year's race (just click on our names to get to our donation pages). The money raised in Michigan stays in Michigan: 75% of the race's net income funds breast cancer screening, treatment and education programs. A minimum of 25% of the race's net income supports the Komen Award and Research Grant Program, which fund breast cancer research, meritorious awards and educational, scientific and community outreach programs around the world. It is an investment that you can feel good about. Thank you in advance for being generous.
My cancer journey, since September 2006, has been such a series of ups and downs. One bright spot was walking in the Indianapolis Komen race with my mom and three sisters in April 2008. I drove 7 hours to get to Indianapolis and to walk the 3K race -- even though I had been diagnosed with a recurrence of my breast cancer only a few weeks prior.
Trust me, I considered not going to the race at all. No one would have blamed me, given the circumstances. But that race day was thrilling for me -- to see cancer survivors lined up by year of survivorship. Some had survived 25+ years! To walk through the "survivor's parade," and see the look on my mom's face... a mixture of worry, hope, love and encouragement. A mother's look.
I decided that day that my family in Michigan needed to have a day like this -- to see the number of survivors, to feel the support and encouragement of so many others who have been touched -- for good and for bad -- by cancer.
On Saturday, May 30, my family will have that day. We will walk in the Komen Race in Detroit: Paul, myself, Shane, Tyler, Liam, my sister-in-law Karen and her husband Scott. It is a family affair. Just like the day of my diagnosis. But May 30 will be a day for reflection. For looking back, and most assuredly for looking FORWARD.
Susan G. Komen is a name that many people recognize as a leader in cancer research and funding. It has that recognition for good reason -- the foundation has invested more than $1 billion in breast cancer education and research since it beginning in 1982. But what many people do not know is that the foundation was started in Susan's name by her younger sister, Nancy G. Brinker. During Susan's fight with breast cancer, she focused her thoughts on making life better for other women battling breast cancer. Nancy vowed to carry forward Susan's legacy, and thus the Susan G. Komen Foundation was born. From the love of a sister. A family thing.
We would be honored if you would sponsor one (or several) of us in this year's race (just click on our names to get to our donation pages). The money raised in Michigan stays in Michigan: 75% of the race's net income funds breast cancer screening, treatment and education programs. A minimum of 25% of the race's net income supports the Komen Award and Research Grant Program, which fund breast cancer research, meritorious awards and educational, scientific and community outreach programs around the world. It is an investment that you can feel good about. Thank you in advance for being generous.
Tuesday, April 7, 2009
Susan G. Komen For The Cure(R) to Invest $60 Million in Research
I just read an update that says a $6.4 million Komen Promise Grant, co-funded by the Triple Negative Breast Cancer Foundation (TNBCF), will investigate ways to add a new drug, along with chemotherapy, to fight triple negative breast cancer.
Scientists will also look for ways to predict which therapies will prove most effective for triple negative breast cancer patients (like me!!).
The full article is available at http://www.marketwatch.com/news/story/susan-g-komen-curer-invest/story.aspx?guid=%7B3E390809-8051-431D-9106-1893EA072137%7D&dist=msr_2
This is one example of how funds, donated to the Komen institute through walks like I'm partcipating in in Indianapolis, turn into real research and real treatments!
To sponsor my in the Indianapolis Komen walk, please use the following link: http://race.komenindy.org/site/TR/Race/General?px=1212504&pg=personal&fr_id=1060
Thank you! :-)
Scientists will also look for ways to predict which therapies will prove most effective for triple negative breast cancer patients (like me!!).
The full article is available at http://www.marketwatch.com/news/story/susan-g-komen-curer-invest/story.aspx?guid=%7B3E390809-8051-431D-9106-1893EA072137%7D&dist=msr_2
This is one example of how funds, donated to the Komen institute through walks like I'm partcipating in in Indianapolis, turn into real research and real treatments!
To sponsor my in the Indianapolis Komen walk, please use the following link: http://race.komenindy.org/site/TR/Race/General?px=1212504&pg=personal&fr_id=1060
Thank you! :-)
Monday, March 30, 2009
Indianapolis Komen Walk -- April 18, 2009
For the second year, I'll be walking in the Indianapolis Komen "Race for the Cure."
To sponsor me in this race, please visit my race page:
http://race.komenindy.org/site/TR/Race/General?px=1212504&pg=personal&fr_id=1060
On May 30, 2009, our whole family will be walking in the Detroit Komen Race. If you would like to specifically sponsor Paul or one of the boys for that race, I will be posting links later this month.
Blessings,
Joan
Friday, March 6, 2009
Walking on Air!
The title of my blog is "Walking on Water."
Today though, I am walking on air because my bone scan and my CT scan came back with NO evidence of metastatic disease! In laymen terms -- I am cancer FREE!
God is sooooo good! And we all are sooooo relieved!
Praise God!
Today though, I am walking on air because my bone scan and my CT scan came back with NO evidence of metastatic disease! In laymen terms -- I am cancer FREE!
God is sooooo good! And we all are sooooo relieved!
Praise God!
Tuesday, March 3, 2009
Finally, Some Good News
Paul and I saw my plastic surgeon and my infectious disease doctor yesterday -- both agree that my wound is essentially healed and should not require any "clean up" surgery! Good news, indeed!
I am sorry that this posting comes so late -- yesterday was a busy travel day, and Liam is home from school with a high fever. Hopefully it is a 24 hour bug?
Today I have my bone scan and CT scan. Hopefully we will get as good of news from those tests as from my docs yesterday.
Cheers!
Joan
I am sorry that this posting comes so late -- yesterday was a busy travel day, and Liam is home from school with a high fever. Hopefully it is a 24 hour bug?
Today I have my bone scan and CT scan. Hopefully we will get as good of news from those tests as from my docs yesterday.
Cheers!
Joan
Wednesday, February 25, 2009
It's That Time Again
It's time for me to get a few tests done and make some decisions.
On Tuesday, March 3, I will have a "routine" bone scan and CT scan. The purpose of this is to look for cancer in other parts of my body -- not because I am symptomatic, but because that is the routine for cancer surveillance. I'll meet with the oncologist here in Midland the following Tuesday to get the results. I feel comfortable with the CT scan, no worries about any cancer in my lungs, etc. The bone scan is always a worry -- is the ache in my bones from past chemo, new cancer or just old age? I'll know in about a week.
After I get good results from these scans (I'm expecting it, so I'm going to get it!), I plan to follow up with my radiation oncologist -- to specifically discuss the risk/benefit of these tests versus the "routine" exposure to radiation, contrast solution, etc.
On Monday, March 2, I have follow-up appointments with my plastic surgeon and infectious disease doctor. The ID doc wants me to have another surgery to remove excess scar tissue from previous surgeries. Her logic is that the scar tissue could be a home for the bacteria that I've been fighting. But, one friend recently asked me: "Won't that just cause more scar tissue??" It is the proverbial "chicken/egg" type of question.
Paul and I are opposed to more surgery -- the more they do to me, the more things seem to get screwed up. Less is more. If it ain't broke, don't fix it. That is our thinking. We have also become convinced that this bacteria was introduced to my body in May 2008 when I had my surgery. It is a long story, but as we learn more about the bacteria, it makes oh-so-much sense to us.
On a holistic, kind of "out there" note -- I have been doing some reading about the bacteria I have had (pseudomonus aeruginosa; think Brazilian model who died), and I have found that Manuka honey has some wound healing properties AND is effective against the bacteria. This is New Zealand research that does not benefit U.S. pharmaceutical or insurance companies so (surprise!) I've never hear about it from my doctor.
But, I have ordered some, plan to use it on the wound that still exists, and hopefully it will heal completely and be gone. The wound is almost healed, and is showing no signs of infection. This is why I'm willing to try something unconventional. I am grateful to conventional medicine -- it has saved my life -- but sometimes I think medical science looses track of the person inside the patient. They are quick to order tests, surgeries, and treatments. They mean well, and they often do well. But some times, a person has to draw a line in the sand and responsibly try other options. That is what I'm doing with the Manuka honey.
In the mean time, please pray for these tests (bone and CT scan) and my doctor visits. I so want this cancer experience to be behind me!
Cheers!
Joan
On Tuesday, March 3, I will have a "routine" bone scan and CT scan. The purpose of this is to look for cancer in other parts of my body -- not because I am symptomatic, but because that is the routine for cancer surveillance. I'll meet with the oncologist here in Midland the following Tuesday to get the results. I feel comfortable with the CT scan, no worries about any cancer in my lungs, etc. The bone scan is always a worry -- is the ache in my bones from past chemo, new cancer or just old age? I'll know in about a week.
After I get good results from these scans (I'm expecting it, so I'm going to get it!), I plan to follow up with my radiation oncologist -- to specifically discuss the risk/benefit of these tests versus the "routine" exposure to radiation, contrast solution, etc.
On Monday, March 2, I have follow-up appointments with my plastic surgeon and infectious disease doctor. The ID doc wants me to have another surgery to remove excess scar tissue from previous surgeries. Her logic is that the scar tissue could be a home for the bacteria that I've been fighting. But, one friend recently asked me: "Won't that just cause more scar tissue??" It is the proverbial "chicken/egg" type of question.
Paul and I are opposed to more surgery -- the more they do to me, the more things seem to get screwed up. Less is more. If it ain't broke, don't fix it. That is our thinking. We have also become convinced that this bacteria was introduced to my body in May 2008 when I had my surgery. It is a long story, but as we learn more about the bacteria, it makes oh-so-much sense to us.
On a holistic, kind of "out there" note -- I have been doing some reading about the bacteria I have had (pseudomonus aeruginosa; think Brazilian model who died), and I have found that Manuka honey has some wound healing properties AND is effective against the bacteria. This is New Zealand research that does not benefit U.S. pharmaceutical or insurance companies so (surprise!) I've never hear about it from my doctor.
But, I have ordered some, plan to use it on the wound that still exists, and hopefully it will heal completely and be gone. The wound is almost healed, and is showing no signs of infection. This is why I'm willing to try something unconventional. I am grateful to conventional medicine -- it has saved my life -- but sometimes I think medical science looses track of the person inside the patient. They are quick to order tests, surgeries, and treatments. They mean well, and they often do well. But some times, a person has to draw a line in the sand and responsibly try other options. That is what I'm doing with the Manuka honey.
In the mean time, please pray for these tests (bone and CT scan) and my doctor visits. I so want this cancer experience to be behind me!
Cheers!
Joan
Tuesday, January 27, 2009
A Small Bump in the Road
It has been a while since I posted.... It is odd because I created this blog to keep friends and family updated on my treatment. For the most part, that is over and so I have not been posting updates. But we've had a small bump in the road -- my infection is back.
Earlier this month my oncologist said he was not as worried about the cancer as he was about the infection "coming back." He warned me what to watch for, and sure enough, on the day that I was to see another doctor anyway, I had just the symptoms we discussed. After a culture of the wound, it was confirmed that the infection is back.
Yesterday I drove to Detroit to see my infectious disease doctor. She is convinced that the infection is localized to the wound, that it never really all went away, but that oral antibiotics are sufficient to treat it. If the wound heals completely, then we know the infection is gone. If not, the next course of treatment would be to surgically remove tissue from the wound, in hopes of getting all the infection. (Sounds oddly close to cancer treatment, if you ask me).
I have to watch for fever and/or chills. That is a sign that the bacteria is on the move and that more urgent treatment is needed (think Emergency Room). I've been feeling fine, so I am not worried. My immune system is stronger than in October, and my doc has a plan of attack. God willing, this stupid wound will heal, stay healed, and I'll be back on track to good health.
Earlier this month my oncologist said he was not as worried about the cancer as he was about the infection "coming back." He warned me what to watch for, and sure enough, on the day that I was to see another doctor anyway, I had just the symptoms we discussed. After a culture of the wound, it was confirmed that the infection is back.
Yesterday I drove to Detroit to see my infectious disease doctor. She is convinced that the infection is localized to the wound, that it never really all went away, but that oral antibiotics are sufficient to treat it. If the wound heals completely, then we know the infection is gone. If not, the next course of treatment would be to surgically remove tissue from the wound, in hopes of getting all the infection. (Sounds oddly close to cancer treatment, if you ask me).
I have to watch for fever and/or chills. That is a sign that the bacteria is on the move and that more urgent treatment is needed (think Emergency Room). I've been feeling fine, so I am not worried. My immune system is stronger than in October, and my doc has a plan of attack. God willing, this stupid wound will heal, stay healed, and I'll be back on track to good health.
Tuesday, January 6, 2009
Last Update for a While?
Good news from my Beaumont oncologist yesterday -- all of my blood components are back in the "normal" range! That confirms that my body reacted badly to the chemotherapy (bad news) but that it is bouncing back (and maintaining) on it's own (excellent news!).
And with that, I move from being a cancer patient back to being a cancer survivor.... I'll have check-ups every three months, and also a bone scan, CT scan and breast MRI in the spring.
The hardest thing for me will be to "exhale" and relax between now and those scans.
My mantra is to tell myself, "Everything is fine today. Enjoy. Tomorrow will take care of itself." That kind of mindset is easier said than done, but it is something I am determined to pull off. Prayer, meditation, housekeeping, good diet, exercise -- all things that I believe will foster an "internal calm." Today, post-Christmas clutter, I am working on the housekeeping aspect! :)
Many folks have suggested a celebration because my treatment is finished.... To be honest, I'd rather just "exhale" and move on with my daily activities. Cancer has become a way of life at our house, not really something with a beginning or an end. It will be a long time before anyone in my family will be confident enough that the cancer is gone to "celebrate." So, lets just help each other remember to laugh and smile and celebrate each day. Our family needs that, and probably to some degree, so do you!
Thank you all for your prayers and cards and meals and gifts and good wishes and... This has been a very hard year, but I am lucky to have my health again and to have the love and support of so many friends and family. God bless each of you!
Grace and peace to you from God our Father and the Lord Jesus Christ. I thank my God every time I remember you.
In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. Philippians 1:2-6
And with that, I move from being a cancer patient back to being a cancer survivor.... I'll have check-ups every three months, and also a bone scan, CT scan and breast MRI in the spring.
The hardest thing for me will be to "exhale" and relax between now and those scans.
My mantra is to tell myself, "Everything is fine today. Enjoy. Tomorrow will take care of itself." That kind of mindset is easier said than done, but it is something I am determined to pull off. Prayer, meditation, housekeeping, good diet, exercise -- all things that I believe will foster an "internal calm." Today, post-Christmas clutter, I am working on the housekeeping aspect! :)
Many folks have suggested a celebration because my treatment is finished.... To be honest, I'd rather just "exhale" and move on with my daily activities. Cancer has become a way of life at our house, not really something with a beginning or an end. It will be a long time before anyone in my family will be confident enough that the cancer is gone to "celebrate." So, lets just help each other remember to laugh and smile and celebrate each day. Our family needs that, and probably to some degree, so do you!
Thank you all for your prayers and cards and meals and gifts and good wishes and... This has been a very hard year, but I am lucky to have my health again and to have the love and support of so many friends and family. God bless each of you!
Grace and peace to you from God our Father and the Lord Jesus Christ. I thank my God every time I remember you.
In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. Philippians 1:2-6
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