LIVESTRONG:

What started as IDC (Infiltrating Ductal Carcinoma) in 2011, then turned into CHF (Congestive Heart Failure) in 2013, probably partially caused by chemotherapy along with a genetic pre-disposition. Here we are now in March 2016 and I am newly diagnosed with Stage IV breast cancer in the left breast and liver (LMBC - liver metastasized breast cancer).


So the focus has shifted yet again, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide helpful information and strength to others & will help to strip away the fears we each experience.


I am strong. I am loved. I am healthy. I WILL SURVIVE!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well. And if you are now cancer free of breast cancer, do everything you can to insist that your doctors follow up with an occasional PET Scan and labs for tumor markers.

WARNING:
Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.

*****************************************************************************************

Tuesday, September 10, 2013

Genetic Counseling Appointment

Monday was the appointment with the Genetic Counselor at Stanford Medical Center. Alura and I met along Highway 80 and she drove from there. This time the appointment was at 1:00 pm so we had plenty of time to get there and do lunch ahead of time. We had a great lunch at a little restaurant called Joanie's on California Street in downtown Menlo Park. Then we even had time to shop at Sur la Table on our way back to the medical center.

It was a wonderful appointment. Rachel Koff was very thorough and spent about 90 minutes with us. She had the medical family tree I had provided, and then spent a good amount of time completing it out even further asking about all my nieces and nephews and cousins too. She will be summarizing everything for me so I'll have documentation to share with my family, and especially to detail the additional information that she would like to get on a few relatives who I do not regularly see.

Alura was such a huge help to me. Not only was it great to have some one-on-one time together, stop for lunch and even shop a bit; but she asked some great questions and offered answers when I stumbled to find them. Yes, it is great having a Nurse Practioner in the family!

I knew when I made this appointment that I wanted to move forward with the blood draw and genetic testing that same day. For me it was a no brainer. I think most of my siblings agree and will move forward once a gene mutation is found, if one is, that is the cause or precursor to the dilated Cardiomyopathy that me and three of my siblings have or had. The "had" being Richard, who was the first diagnosed at approximately 33, who then went on to immediately need a heart transplant to save his life, and then died at age 40. Rich's transplant, and procedures leading up to it, generated international news; bringing many newspaper articles around the globe and TV reporters to our family shortly after his transplant. Just Google "Richard Dallara Heart Transplant" and you will locate several articles like this one:  Human Heart Replaces Pumps In Patient.

Of course my children, and the children of my siblings who have been diagnosed all are wondering if they are carrying the potential gene; as well as my siblings who have yet to escape the diagnosis. 

Now to wait the 3-4 months to get the results of the genetic testing. I asked, "Why so long?". The reply was that the work to locate the gene is done in batches. Any blood collected for this test is put through each batch as a group. The good news is that when I return for my followup mid-December, the results should be in. At this moment in time, December is not feeling so very far away anymore, sadly. Sadly because that means both Summer and Fall are gone.

I am anxious to get Ms. Koff's summary of our counseling appointment, and to move forward with this process. Knowledge is power and this is knowledge me and my family desperately need at this moment in time.

Debbie... aka the cancer warrior, SURVIVOR, AND now the Cardiomyopathy warrior!!!



LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •



Comments are good. Please leave one for me so I know you visited. AND thanks for visiting!




2 comments:

  1. Hi Deb. Hi everyone. I'm Sibling No. 5 and so far my heart seems Strong. I am hoping and praying that my results come back negative, but if they don't, I'll be thankful that I can do somethIng to keep the disease from progressing very far. Debbie is truly a black belt warrior of the first degree. Even in the midst of all this difficulty God is doing something very great in her right now. I hope she knows how special and loved she is.

    ReplyDelete
  2. Thank you, Nancy. You are too sweet. I am doing what feels right and necessary. Can't imagine doing anything differently. So hopeful that the rest of the family is spared from any genetic mutation causing this disease, if one is found. God is good.

    ReplyDelete

Thank you for visiting and leaving a comment. Your comment will be reviewed and approved the next time I visit.
Debbie