My story...(hope its in the right forum)!

Soccermom · 11-03-2006, 11:31 AM

Dear friends,
I thought that it was time to share this with you. Because of the joint pain and trigger finger typing is uncomfortable. This link will take you to my story and hopefully give you some insight into who I am. Check out the additional photo link.

The photojournalist that did the story won 1st place in the Mississippi press association yearly contest. And also a Pulitzer.

Ironically, I am not BRCA+ but am Her2 +++ !When diagnosed I knew NOTHING about Her2 as I had focused my research for 5 years on BRCA related issues. I am still pretty much in the dark and rely on you folks for current information.

Thank you for starting this site Joe and Christine!

Glad to have found you!

Marcia

http://www.sunherald.com/mld/sunhera...h/15864431.htm

StephN · 11-03-2006, 12:23 PM

Hi Marcia -

I took a moment to read the story of your treatment and see the photos. That is a good photojournalist, by the way.

You may want to put this in the Profiles in Courage area of this site.

When Katrina hit last year we lost track of a few members from the New Orleans and coastal areas. I recall you saying you had to go to Florida to continue your treatment. Glad to know that you have resettled back in Mississippi, and getting on with your life.

Just one question. Why did the port come out so quickly the first time?? Seems like it was rushed when there were some other considerations in the offing.
I know Herceptin was a new drug, but if that was on the table, it would be better to not have another surgery.

Sure hope the problems with the joints gets better. Mine finally did, but it took a while. I don't have the joint pains on Herceptin only, and that IS a blessing as I am a "lifer" with Herceptin.

"May the FORCE be with you."

Sheila · 11-03-2006, 01:56 PM

Marcia
Thank you for this gift and journal of your journey....you brought tears to my eyes and hope and warmth to my heart.....you are in my prayers. You have undoubtably helped many with your story.

rinaina · 11-03-2006, 01:56 PM

I enjoyed reading your post, article and photos. The photojournal looks all too familiar. So sorry you had to have a port placed twice though. My port is in my lower arm and I can shower with it unprotected so it's great. I just finished chemo and rads and have been getting herceptin since late August. So happy to have chemo and rads over and everything that went with them. So far doing well with herceptin but have had a raise in blood pressure since starting it, swelling in ankles at times, and a runny nose....all tolerable, but concerned over change in blood pressure. I use to have incredibly good bp. I am on a diuretic now which has helped a bit. Damned if you don't damned if you do. What a great idea you had to journal by pictures. I journaled on the caringbridge.com site but no pics other than my before and after hair pics. Thanks for sharing your story. It resembles so many of ours on this site.

Soccermom · 11-03-2006, 08:54 PM

Dear Steph,
The reason that I removed the other port is because it was actually, a central venous catheter. MDAnderson placed the catheter under local anesthesia (I'll never agree to THAT again,LOL) in Jan 05 and by May when I completed A/C ,Taxol dose dense I was SICK of having to be so cautious all the time. The CVC required much more care (daily flushing,sterile dressings etc) so I opted to swap out to a BARD implanted port.Doc wants me to keep that for another 8 mo. just in case. I will place the link in the "Courage" forum ,thanks for the heads up.

Thank you for the kudos.John Fitzhugh (the photojournalist) was a dear friend of mine before the cancer. He just happened to be the chair for the
Relay for Life in Harrison County Miss. Prior to my diagnosis I always had an informational table set up at the Relays for FORCE. He and his family became part of our family during my treatment and subsequent evacuation. They are just the most wonderful folks.
Rinaina and Sheila, my story is supposed to be representative of every survivors story. I just wanted to be honest and not paint the "pretty picture" that the media tends to favor. John and his newspaper allowed me to do just that. I did take some flak for the "topless" photo, but all in all I hope that maybe,just maybe, one woman paused and reflected on her own family history,or had some abnormality readdressed. It was worth baring my soul for that.

Thanks for welcoming me back. I have been reading alot but not posting too much over the last year. I have a LOT to learn from you all!

Marcia

tousled1 · 11-03-2006, 09:10 PM

Marcia,

I enjoyed reading your story. You should post it on "Profiles in Courage." That was a great concept of photo journalism. Keep fighting!

astrid · 11-05-2006, 07:08 AM

I felt the same way as the other posters the photo journal reminded me of my journey although I did not understand why you had to have two ports? I have the same port for my chemo and herceptin and I do not have to flush mine daily. Funny how there are little differences in all of our treatments.