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.

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...

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....

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... ?

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.

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! :-)