Sandra Bishnoi's Journal
Work in progress
Written Sep 25, 2013 9:30amHi everyone,
I haven't updated in a while, but it has been busy the last couple of weeks. I attended the MBCN conference this weekend and visited with so many amazing men and women living with metastatic disease. I was privileged to be asked to speak and tell my story. The video will be available soon and I will post the link when it is. I also had a CancerWise blog posted yesterday. http://www2.mdanderson.org/MT/mt-search.cgi?search=%22sandra+bishnoi%22&IncludeBlogs=6&limit=20
It is essentially my last CaringBridge post rewritten.
I have been pleased to be able to use my role as Advocate to help the general public to understand what the 150,000 men and women living with metastatic disease are facing. As we get ready to start "Pinktober" please resist the urge to buy a product because of a pink ribbon on the label. Instead, give directly to organizations that are truly trying to understand the causes of cancer and treat metastatic disease. If you know of organizations that would benefit from some education about metastatic breast cancer, please let me know! I have friends all over the country (and Canada) who are willing and able to educate others about this disease. Final note for today, I am thinking about migrating my CaringBridge writings to a blog. Any thoughts? This would allow me to have a place to play "Advocate" while keeping my CaringBridge site to be "patient." Your support has meant the world to me, so I would really appreciate your opinion.
May you all have a fabulous day, full of good health, laughter and love!
Written Jul 23, 2013 4:17pmSo I am sitting down to write because I feel the need to write, not because I have anything of brilliance to say. My brain is overloaded with thoughts and emotions. I need to process a lot of information, but don’t know how to get through it all. What kind of information?
What to do with my life?
Work or not work? Work part-time or full-time? Is it possible to have a full-time job and not be too stressed out? Is it enough to teach chemistry part-time? Could I have a scientific role to play in improving patient outcomes? How do I give back to the breast cancer community without it taking over my life? How to deal with NED? How do I maintain a balance between good mental and physical health? How do I raise healthy children in a world that seems to be intent on introducing / reinforcing bad habits? How do I remain honest with my kids about my condition without scaring them? Are my mental shortcomings a result of treatment or have they always been there? (This one is rhetorical, no need to answer). For now, I take deep breaths and go back to basics.
What are “the basics”?
I get out of bed. I feed and take care of my children. When I don’t have too many doctors’ appointments or kids at home, I exercise. I eat my veggies. I try (and sometime succeed) to avoid sugar. I avoid alcohol. So what’s wrong with that? Nothing, they are all fine actions, but I am just cranky about it and feel incredibly empty at the moment.
Why am I so cranky?
I am cranky that my dear friend is waging her own personal war against the cancer demons inside of her and that they seem to be winning some key battle states. It tears me up that (in my mind) I was supposed to be able to help her, provide some guidance in these uncharted waters. I know that it isn’t logical, because everyone’s case is different, but I felt that I should be able to show her what cancer as a chronic disease looks like. Cancer doesn’t always equal death! But is that true? I have met women that are living 20+ years with their disease, so that has always given me hope. But lately I have seen too many who are running out of options. In the last two weeks, three of the women that I met at last year’s MBCN Conference have died of cancer (two of them in the Under 40 group). I have also met women recently who have had multiple years of NED (no evidence of disease) status, just to have their inflammatory breast cancer return with a vengeance. I want to do something tangible to make a difference but I don’t know what to do. Is it enough to share my story with others and hope that it gives them a wake-up call that cancer can happen to anyone at any age and to take care of themselves? I’ve been asked to share my story a lot lately through a group sponsored by Novartis called, “Count Us, Know Us, Join Us.” They did a survey of ~1300 metastatic breast cancer patients in 13 countries and have been trying to publicize their results. In the last month, I’ve done a radio interview with The Doctors (Sirius Radio), a television interview with our local ABC13 station, and a phone interview for ABCNews.com. I have to say that radio was my favorite format so far, but when it comes down to it I’m not sure that I have had a tangible impact on the breast cancer community.
How do I “live life fully”?
I was told by my gynecological oncologist a couple of weeks ago to “live life fully.” I am not so sure what this really means, but based on my conversation with her, she is trying to say that I should move forward with my life without constantly thinking about cancer. It can’t be the focus of who I am, because it is really only part of me. I am not quite sure how to do this without constantly looking over my shoulder. I “knock on wood” constantly, not because I think that it will change anything (I am not a superstitious person), but because I am afraid to tempt fate. Just as there was no rhyme or reason to why I got cancer or why I am NED, there is also no reason that those pesky little cancer cells aren’t going to outsmart my Tamoxifen and start waging a full-scale attack on my body. I know that if and when that happens that there is still a cabinet full of things to try and help regain control over the cancer, but nothing to “cure” it. I would love to find a job where I can use my scientific background to help come up with solutions for those fighting cancer. I thought that maybe I could get into bioinformatics (a field that helps analyze tumor samples and come up with customized chemotherapy solutions), but after talking to experts in the field, it requires a lot of computer programming and I just don’t have the skills to be helpful there. So what’s next? For now, I will continue teaching and hope that another door will open up along the way. Thank you all for your support over the last 2 ½ years. Your prayers and encouraging words have meant the world to me. I know that I don’t update this site much lately, but please know that your community has helped me in numerous ways. I hope that my story will remind you to hug your loved ones, let go of some of your stress, and take care of your health.
With best wishes and many happy thoughts.
Written Jul 3, 2013 10:39pmI know that it has been a while since I sent an update. I have been busy with the kiddos and a multitude of doctors' appointments this last week.
-The kids and I were featured on the news last week talking about living with metastatic breast cancer (http://abclocal.go.com/ktrk/story?section=news/health&id=9154576).
-I had an ultrasound to check out my ovaries, since I have been having some Tamoxifen related side effects. Everything is okay for now.
-I had an MRI on my pelvis and it looks to still be healing with no new metastasis. (Yeah!!!)
-My oncologist announced to his entourage that I am a "very boring metastatic patient" which was wonderful to hear.
-I had another round of Zometa with no major side effects.
-Overall, we are all doing a ok.
Please keep my dear friend Carla in your prayers. She has had a rough week and could use some good news.
Happy 4th of July to you all! May you all have a safe and fun time with those you love.
Hugs and happy thoughts,