(This is a post from Heather Von St. James, who was diagnosed with pleural mesothelioma in 2005 at age 36 and is excited to tell her story today, thanks to her own advocacy for her health and the quick action of her doctors. This post has been edited only for length and clarity.)

“Something is off in your blood work. I want to do more tests and a chest X-ray to find out what is wrong.”

This is what my family practitioner, Dr. John Doyle, told me one October morning back in 2005 when I went to see him for symptoms of a chest cold that just would not go away.

Heather Von St. James

It was 3 ½ months after my daughter, Lily, was born, that I started having puzzling symptoms. I had extreme fatigue, rapid weight loss, night sweats that would leave my pajamas and sheets wringing wet when I woke up, and a persistent low grade fever that struck around the same time every day.

Dr. Doyle listened to me rattle off my symptoms, looked at my chart and ordered a blood test to check my hemoglobin. He assumed correctly that I was quite anemic. He put me on iron pills, and sent me home, hoping that would take care of the symptoms.

Pushing for the right diagnosis

I wish it had been that simple. I was back in Dr. Doyle’s office a week later, feeling slightly better, but still had many of the same symptoms. I also started feeling like a truck had parked on my chest. I could not catch my breath, or take a deep breath no matter how hard I tried.

He was worried. Dr. Doyle knew many of my symptoms could be written off as postpartum, but he listened to me and really took into consideration all my body was going through. He ordered more blood tests, came back about 30 minutes later and told me some of my protein levels were higher than they should be. He sent me for some chest X-rays to see what was going on.

It was this chest X-ray that offered a reason for my shortness of breath. There was fluid sitting around my left lung. He said there was something else there, but needed more imaging to determine what it was. He wasted no time in getting me to the hospital to see a pulmonologist, Dr. James Flink, who found the tumor on my left lung and ordered the biopsy.

Going from diagnosis to treatment

On Nov. 21, 2005, Dr. Flink delivered the news. I had malignant pleural mesothelioma, a cancer of the lining of the lungs caused by asbestos exposure. Through tears in his eyes, he explained if I did nothing, I would not live beyond 15 months. If I did chemotherapy and radiation, I may live 5 years, but there was this groundbreaking and very risky surgery that I could have done that would give me my best chance at longer-term survival – perhaps 10 years if I was lucky.

Dr. Flink had never treated mesothelioma, but he found a surgeon in Boston, named Dr. David Sugarbaker, who could perform the surgery. It would mean traveling to Boston from our home in Minnesota, and spending precious time away from our baby, but it offered us the best chance at surviving this disease. Without missing a beat, my husband said, “Get us to Boston.”

It was the combination of these two hometown doctors that saved my life. My family doctor listened to me when I explained what my body was going through. His referral to the pulmonologist is what set in motion the next steps that I attribute to my surviving mesothelioma for 11 years and counting. Their determination to find answers and willingness to go out on a limb for me is something that I will always remember.

As promised, Dr. Flink got us an appointment with Dr. David Sugarbaker in Boston just 12 days after that fateful day in his office. We arrived in Boston at the International Mesothelioma Program at Brigham and Women’s Hospital in early December.

Taking quick action

We met Dr. Sugarbaker at an orientation they have for new patients. As I sat in the room with those other patients, the reality and severity of the situation overwhelmed me. I had left my four-month-old baby in the capable care of my parents to come see if this doctor could offer us the hope we so desperately needed. That day was the start of a very special relationship. I found out I was a candidate for the surgery and scheduled the procedure for Feb. 2, 2006.

This surgery, called an extrapleural pneumonectomy, entails the removal of the affected lung, the lining of that lung, half of the diaphragm, the lining of the heart and a rib, plus any affected lymph nodes. During the surgery, a heated chemo wash is pumped into the chest cavity and washed around for an hour. They jokingly call this the “shake and bake.” The chemo solution is pumped out. The diaphragm and pericardium are then replaced with surgical Gore-Tex and the incision is closed. The procedure was just over eight hours and went as expected.

Forging a bond with Dr. Sugarbaker

Heather with Dr. David Sugarbaker

As years went on, the time between appointments went from three months, to four months, to every six months. I was finally comfortable in a routine when I got the news Dr. Sugarbaker was taking a sabbatical. When he returned, Dr. Sugarbaker moved his practice to the Baylor College of Medicine. It was a bit daunting to start all over. I had been going to Boston for 7 years. I knew the whole staff, had friends in the city, finally found the good hotels and restaurants. I’m happy to say that I’m still with Dr. Sugarbaker and return to Houston every six months for checkups.

In the mesothelioma world, 11 years is a lifetime. Most people don’t make it beyond five years, so the fact that I’m still here, and doing so well, makes Dr. Sugarbaker and I incredibly happy. I know the fast actions of my doctors in Minnesota, coupled with the aggressive treatments I had, saved my life. I’m proud to be a part of his story, and proud of the relationship we’ve built over the years.

What’s in it for you?

Much more!

The Power of You! 100% of the proceeds from this event support 15-40 Connection’s lifesaving education. When it comes to cancer symptoms, knowledge is power. 15-40 Connection is saving lives by educating people on how to recognize cancer symptoms early.

Information about the sponsorship opportunities, golf and gala guest packages and gala tickets are below. You can also donate items for our auctions or larger-than-life goody bags. To donate, please email us at info@15-40.org.

PRESENTING SPONSOR | $50,000

Logo and/or name recognition on selected signage and print/media material including*:

Event brochure, auction program, gala program, website, lead position on main sponsor sign at both golf courses, golfer “Goody bag”

12 Player spots with choice of golf course

12 “Goody bags” jam packed with fun and valuable items

12 Free Prize Drawing Tickets for golfers for a cache of gifts

24 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

Opportunity to place branded item(s) in the “Goody bags” distributed to all golfers

GALA SPONSOR | $25,000

Logo and/or name recognition on all signage and in all printed/media material including*:

Event brochure, auction program, gala program, website, main sponsor sign at both golf courses

8 Player spots with choice of golf course

8 “Goody bags” jam packed with fun and valuable items

8 Free Prize Drawing Tickets for golfers for a cache of gifts

16 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

Opportunity to place branded item(s) in the “Goody bags” distributed to all golfers

TOURNAMENT SPONSOR | $25,000

Logo and/or name recognition on all signage and in all printed/media material including*:

Event brochure, gala program, website, main sponsor sign at both golf courses

8 Player spots with choice of golf course

8 “Goody bags” jam packed with fun and valuable items

8 Free Prize Drawing Tickets for golfers for a cache of gifts\

16 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

Opportunity to place branded item(s) in the “Goody bags” distributed to all golfers

TOURNAMENT LUNCH & SNACK SPONSOR | $10,000

Logo and/or name recognition on selected signage and print/media material including*:

Event brochure, gala program, website, main sponsor sign at both golf courses, thank you acknowledgement at lunch and snack stations

4 Player spots with choice of golf course

4 “Goody bags” jam packed with fun and valuable items

4 Free Prize Drawing Tickets for golfers for a cache of gifts

8 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

Opportunity to place branded item(s) in the “Goody bags” distributed to all golfers

GALA & GOLF ENTERTAINMENT SPONSOR | $6,000

Logo and/or name recognition on selected signage and print/media material including*:

Event brochure, auction program, gala program, main sponsor sign at both golf courses, thank you acknowledgement
announcement from featured entertainers

2 Player spots with choice of golf course

2 “Goody bags” jam packed with fun and valuable items

2 Free Prize Drawing Tickets for golfers for a cache of gifts

4 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

GOLF CART SPONSOR | $6,000

Logo and/or name recognition on selected signage and print/media material including*:

Event brochure and gala program

2 Player spots with choice of golf course

2 “Goody bags” jam packed with fun and valuable items

2 Free Prize Drawing Tickets for golfers for a cache of gifts

4 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

GOLF BALL SPONSOR | $4,000

Logo and/or name recognition on selected signage and printed/media material including*:

Event brochure, gala program, golf ball distributed with “Goody bag” to each golfer

1 Player spot with choice of golf course

1 “Goody bag” jam packed with fun and valuable items

1 Free Prize Drawing Ticket for golfer for a cache of gifts

2 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfer on tournament day

SCOREBOARD SPONSOR | $1,000

Logo and/or name recognition on selected signage and print/media material including*:

Event brochure, gala program, multiple scoreboard signs strategically placed at both tournament golf courses

2 Gala guests

Parting gift for each Gala couple

TEE SPONSOR | $750

Logo and/or name recognition on selected signage and print/media material including*:

Event brochure, gala program, on two tees sponsorship signs placed at the 1st tee box at both golf courses

2 Gala guests

Parting gift for each Gala couple

*Printing and/or embroidering deadlines apply to the above.

PLATINUM SUPPORTER | $16,000

Logo and/or name recognition in event brochure, gala program, main sponsor sign at both golf courses*

8 Player spots with choice of golf course

8 “Goody bags” jam packed with fun and valuable items

8 Free Prize Drawing Tickets for golfers for a cache of gifts

16 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

GOLD SUPPORTER | $8,000

Logo and/or name recognition in event brochure, gala program, main sponsor sign at both golf courses*

4 Player spots with choice of golf course

4 “Goody bags” jam packed with fun and valuable items

4 Free Prize Drawing Tickets for golfers for a cache of gifts

8 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

SILVER SUPPORTER | $4,000

Logo and/or name recognition in event brochure, gala program, main sponsor sign at both golf courses*

2 Player spots with choice of golf course

2 “Goody bags” jam packed with fun and valuable items

2 Free Prize Drawing Tickets for golfers for a cache of gifts

4 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfers on tournament day

BRONZE SUPPORTER | $2,000

Logo and/or name recognition in event brochure, gala program, bronze sponsor sign at both golf courses*

1 Player spot with choice of golf course

1 “Goody bag” jam packed with fun and valuable items

1 Free Prize Drawing Tickets golfers for a cache of gifts

2 Gala guests

Parting gift for each Gala couple

Breakfast, lunch, dinner for golfer on tournament day

*Printing and/or embroidering deadlines apply to the above.

GALA & AUCTION TICKETS | $650

2 Gala guests

Parting gift for each Gala couple

PRIVACY POLICY

Information we collect and how we use it.

The 15-40 Connection, Inc. may collect information independent of Blackbaud- the host for donations. For Blackbaud’s privacy policy, please visit Blackbaud Privacy Policy.

Contact and Personal Information
You may choose to provide contact information (such as your name, address, telephone number and email address) on this web site. Providing this information is strictly voluntary, and the failure to provide information in most instances will not restrict your use of the website. We will not ask you for any credit card number, social security number, driver’s license number or other financial account number on the website except through the donation pages that are hosted by our partner, Blackbaud.  From time to time, 15-40 Connection may host contests or sweepstakes, which will require you to provide information to participate. Here are some of the ways you may provide the information and the types of information you may submit. We also tell you how we may use the information.

Contact Us
If you email us through the “Contact Us” page on this site, we ask you for information such as your name and email address so we can respond to your questions and comments. You may choose to provide additional information as well. You should not provide any credit card number, social security number or other financial account number when using the contact us screen.

Send Content to a Friend Questionnaires and Surveys
We may ask visitors to our web site to complete online surveys and opinion polls about their activities, attitudes and interests. These surveys help us serve you better and improve the usefulness of our site. In conducting these surveys we may ask you for your name and email address. We do not keep any personal information about you in connection with your participation in a 15-40.org survey unless you specifically agree to provide that information.

Send Content to a Friend
You can send certain content to your friends. To do so, we ask you to provide your name and your friend’s email address. We use this information to send the content to your friend.

Public Areas Sweepstakes or Contest Registration
We occasionally may conduct sweepstakes or contests that ask visitors to our web site to complete registration forms that include name, mailing address, phone and email address and additional personal information about their age, activities, attitudes and interests. Registration questions allow us to contact you if you are a winner and help us serve you better and improve the usefulness of our site. Your name, age and home state may be posted on our web site if your name is drawn as a winner.  In conjunction with your Contest Registration, we will also register you as a user of the 15-40 website.  As a registered user, we may also send you news, announcements, requests for donations or similar communications as a result of your Sweepstakes or Contest Registration.  Instructions for opting out of receiving this information appears in the section titled “Opting Out”. We will not sell your information to any other person.

Public Areas
The 15-40 Connection is currently in the process of expanding the content in its public areas (including on social media).  You may comment on a blog, or share your personal information on the 15-40 Connection web site or other social channels. Sharing information is helpful to other visitors to the 15-40 Connection web site who may learn from you experiences. We do keep your personal information in association with your submission.  We do not share your contact information with others without your permission; however, if you provide contact information in a public area, we do not automatically remove it.  Any person visiting the 15-40 Connection public areas would be able to see the information. You may not provide any credit card number, social security number or other financial account number about yourself or another in a public area.  Such information will be violation of our Terms of Use.

Donations
You may choose to make a donation to the 15-40 Connection by visiting pages marked to provide donations.  When making a donation, we will ask for your name, mailing address, phone number and email address and may ask for additional information about your age, activities, attitudes and interests.  You may also choose to have your donation processed with ACH transfers of credit card transactions, which will necessitate that you provide financial account numbers, such as a credit card number, bank account number and bank routing number (“Financial Account Information”).  In conjunction with your Donation, we will also register you as a user of the 15-40 website.  As a registered user, we may also send you news, announcements, requests for donations or similar communications.  Instructions for opting out of receiving this information appears in the section titled “Opting Out”. We will not sell your information to any other person.  We will not store any of your Financial Account Information.

Registrations
From time to time, we may offer you other methods to become a registered user for the website.  When registering, we will ask for information that includes name, mailing address, phone and email address and may ask for additional personal information about your age, activities, attitudes and interests.  As a registered user, we may also send you news, announcements, requests for donations or similar communications as a result of your Sweepstakes or Contest Registration.  Instructions for opting out of receiving this information appears in the section titled “Opting Out”.

Other Information
We collect certain aggregate and non-personal information when you visit this web site. Aggregate and non-personal information does not relate to a single identifiable visitor. It tells us such things as how many users visited our site and the pages accessed. By collecting this information, we learn how to best tailor our web site to our visitors. We collect this information either through “cookie” technology or with “web beacons,” as explained below.

Web Beacons
Certain pages on our site contain “web beacons” (also known as Internet tags, pixel tags and clear GIFs). These web beacons allow third parties to obtain information such as the IP address of the computer that downloaded the page on which the beacon appears, the URL of the page on which the beacon appears, the time the page containing the beacon was viewed, the type of browser used to view the page, and the information in cookies set by the third party. We use log files to store the data that is collected through web beacons. The 15-40 Connection may also use third party web beacons to help manage online advertising. These web beacons would be provided by our ad management partners and Google Analytics. These files enable Google Analytics to recognize a unique cookie on your web browser, which in turn enables us to learn which advertisements bring users to our web site. The cookie on your web browser was placed by the 15-40 Connection, or by another advertiser who works with Google Analytics. With both cookies and web beacon technology, the information that we collect and share is anonymous and not personally identifiable. It does not contain your name, address, telephone number, or email address.

Cookies
Like many organizations, we use browser cookies on this web site. Browser cookies are bits of text that are placed on your computer’s hard drive when you visit certain web sites. We use browser cookies to tell us, for example, whether you’ve visited us before or if you’re a new visitor and to help us identify site features in which you may have the greatest interest. Browser cookies may enhance your online experience by saving your preferences while you are visiting a particular site. The “help” portion of the toolbar on most browsers will tell you how to stop accepting new browser cookies, how to be notified when you receive a new browser cookie, and how to disable existing browser cookies. Remember though, without browser cookies, you may not be able to take full advantage of all our web site features. We may also use flash cookies on our web site to enhance your online experience. Flash cookies are similar to browser cookies, except that they can store data more complex than simple text. Flash cookies, by themselves, cannot do anything to or with the data on your computer. In addition, flash cookies cannot access or remember your email address or other personal information unless you provide the information on this site. We use flash cookies to provide you with a better user experience.

Information We Share
We do not sell or otherwise disclose personal information about our web site visitors, except as described here. We may share information provided by our visitors to 15-40.org with service providers we have retained to perform services on our behalf, including but not limited to performing routine maintenance, design, web site management and public relations. In addition, we may disclose information about you (i) if we are required to do so by law or legal process, (ii) to law enforcement authorities or other government officials, or (iii) when we believe disclosure is necessary or appropriate to prevent physical harm or financial loss or in connection with an investigation of suspected or actual illegal activity.

We reserve the right to transfer any information we have about you in the event we sell or transfer all or a portion of our business or assets. Should such a sale or transfer occur, we will use reasonable efforts to direct the transferee to use personal information you have provided through this web site in a manner that is consistent with this Privacy Statement.

If you provide Financial Account Information, this information will be shared with our service providers for processing the transaction.  We will not store your Financial Account Information.

Children’s Privacy
This web site is not directed to children under the age of thirteen and we do not knowingly collect personal information from children under the age of thirteen on the site. If we become aware that we have inadvertently received personal information from a visitor under the age of thirteen on the site, we will delete the information from our records.

How We Protect Personal Information
We maintain administrative, technical and physical safeguards to protect against unauthorized disclosure, use, alteration or destruction of the personal information you provide on this web site. We use secure socket layer (SSL) technology for all transactions involving Financial Account Information and registration, including Sweepstakes and Contest Registrations to help keep the personal information you provide on this site secure.

How To Opt-Out of receiving Emails From 15-40 Connection
If you no longer wish to receive email news, announcements, requests for donations or similar email communications please email us at info@15-40.org and write, “unsubscribe” in the subject line.

Updates to Our Privacy Policy
This Privacy Statement may be updated periodically and without prior notice to you to reflect changes in our online information practices. We will post a prominent notice on this web site to notify you of any significant changes to our Privacy Statement and indicate at the top of the statement when it was most recently updated.

How To Contact Us
If you have any questions or comments about this Privacy Policy, or if you would like us to update information we have about you or your preferences, please Contact Us.

-Last Updated February 2015