Sandra Bishnoi's Journal
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,
Continuing on the journey
Written Jun 11, 2013 2:34pmHi everyone,I know it has been a long while since I posted an update. The good news is that there really isn't much to report. I just did another round of bone scans and bone surveys a couple of weeks ago. They finally posted the results online and I continue to show no evidence of disease (NED). [For those of you super short on time, you can feel free to stop here!] This is wonderful news, but it has left me feeling a bit nervous or uncertain. I guess I always have this level of uncertainty, but being on the clinical trial helped me feel a bit more secure because I knew I was being monitored monthly and if something (let's be clear, cancer) decided to take a turn for the worse I knew that someone would notice (and not just me). For now I will continue on my current treatment of Zometa and Tamoxifen with the only modification is that I will move to having the Zometa infusion once every three months. This is timely, since the monthly infusions have definitely started leaving me exhausted (evidently you can develop a infusion syndrome, who knew?).Since teaching ended, I have been busy with breast cancer advocacy activities, including writing for MD Anderson and now for the Inflammatory Breast Cancer Network (www.ibcnetwork.org). I wrote a piece about how I first discovered I had Stage IV IBC, including all of the (now) obvious signs that I missed along the way (http://www.theibcnetwork.org/2013/06/05/too-young-for-cancer-breast-cancer-in-young-mothers/). It was good to sit down and write again. I hope to be able to contribute to their blog more often. I have also written a piece about support groups that will be on the MD Anderson website soon.Otherwise, I am spending this week hanging with my not-so-little guy. We've had fun swimming at the neighbors, running errands, doing some catch-up homework, and having lunch "out". It has been very sweet to be able to spend time with him this week. I only feel moderately guilty about sending little girl to school, knowing that she too will have her "mommy-time". I am still missing work and grown-up conversations, but am also thankful to be able to take this time to spend time with my kids individually.I would like to ask for big prayers for a dear friend. My friend Carla was diagnosed around the same time that I was, but with early stage cancer. She was given the all clear and sent along her way, but relapsed less than a year later. She is now Stage IV and searching for treatment options. It looks like she is going to be accepted into a clinical trial at Sloan-Kettering, but she's having a rough go of it right now. If you believe in the power of prayer and positive thoughts, please take a minute to lift her in prayer. She is an awesome person and I hate that she is having to go through this SH**.Otherwise, I wish you all good physical and mental health. I hope the longer days are treating you with kindness.Many blessings,Sandra