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.

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! :-)

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

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!

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

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

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.