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.

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Tuesday, March 15, 2016

Lots of Resources from UCSF

Later in the day on Tuesday, March 15th, I received a call from April of UCSF. She reviewed a service that they offered where one of their representatives will sit in on a patient's appointment and takes notes, as well as record the meeting. I was offered this service and am now on a wait list. I hope it works out. My appointment is on March 29th.

She then sent me to a weblink for a private online survey to get all my basic information into their system, which I have completed. In addition, a followup email arrived a short time later. The amount of information contained in this email, and all the web links, are a bit overwhelming. For now I have set it aside and will go back to it next week to make headway. But one of the links I am in the process of watching is a slideshow to educate patients all about UCSF, their different campuses, parking, etc. I imagine the rest of it will be just as helpful once I get there.

The following summarizes most of the information contained in April's email which might be appropriate to others:

• Carol Franc Buck Breast Care Center http://cancer.ucsf.edu/breastcarecenter/treatment/metastatic_breastcancer

• Healthwise® Knowledgebase Breast Cancer Metastatic or Recurrent: Topic Overview

• Living Beyond Breast Cancer www.livingbeyondbreastcancer.com/Audiences/Living-with-Metastatic-Breast-Cancer Offers news on advanced disease, treatments and updates on clinical trials.

SMARTPHONE APPS
These links point to places where you can make your own question-lists and staff record your appointments
• Cancer.Net: www.cancer.net/multimedia/mobile-applications 
This free app is available for iPhone, iPad, and Android phones. It provides detailed educational information for many cancers and offers a long list of sample questions organized by type of doctor. Breast cancer specific questions can be searched for. Information about medications and symptoms can be stored on the app. The app does not create audio-recordings.
• Pocket Cancer Care Guide: www.canceradvocacy.org/resources/pocket-care-guide/ 
By National Coalition for Cancer Survivorship. Free iPhone app to build a list of questions, links the questions to the appointment in your calendar and allows you to staff record the answers. Offers questions to choose from, a glossary of terms, and allows you to create your own questions.
• Appointment Buddy: www.appointmentbuddyapp.com 
This free iPhone app allows you to staff record audio, take pictures, and write notes for your appointments. No need to register; simply download the app and begin organizing appointments. Recordings, notes, and pictures can be emailed to others in compressed files. The app does not help build question lists.
• HerStory Free downloadable app (iPhone or Android) that virtually connects women with breast cancer to women like themselves. You can choose to listen to stories or contribute your story. Stories are organized by topic such as Surgery & Recovery, Reconstruction or not, and Emotional support. http://www.22otters.com/herstory.html
• Smart Voice Recorder: https://play.google.com/store/apps/details?id=com.andrwq.recorder&hl=en 
This Android app allows you to staff record appointments easily and share via email. Easy to use interface but only creates *.wav files which means the files can be quite large for longer appointments.
• Super Voice Recorder: https://play.google.com/store/apps/details?id=com.enlightment.voicerecorder 
This Android app is not as sophisticated as others, but creates mp3 files and shares them easily.


I hope some of this information is helpful to others. This is just a small portion of resources provided. I omitted anything which appeared to be specific to patients of UCSF.



Please continue to keep me in your thoughts and prayers.

Life is Good... Most of the time

Debbie... aka the cancer & cardiomyopathy FIGHTER!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

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