Sandra Bishnoi's Journal
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
The Houston Avon Walk Experience
Written Apr 22, 2013 11:40am
The long wait is over. The LONG WALK is over. So, in the end, was it worth it? Absolutely! It wasn't without its trials, but it was an experience that will be long remembered. Am I crazy enough to do it again next year? Maybe.
The Opening Ceremony
As we walked up to the opening site, tears began to well. I never know if they are tears of grief or joy, but the same thing happened to me last year. I took my turn to write a message on the inflatable towers and the tears had to flow. Sometimes it is good to just let the flood of emotions come and allow yourself to move on. We stood around in the cool morning, waiting for Sanjay’s turn to speak. Sanjay was asked to start off the opening ceremony by talking about why he participates in the walk. (He’s a good sport. I had petitioned to be a “Media Walker” to try and spread the word about metastatic cancer, but they wanted to hear Sanjay’s story more.) He spoke about my diagnosis with Stage IV breast cancer, his first Avon Walk in Chicago while I was going through chemo, my walk last year in Houston, and that this was our first time to walk TOGETHER. He did an excellent job and I am pretty sure that I cried throughout his one minute, ten second speech. If I can figure out how to upload it onto YouTube, then I will share it. He was a rock star for the rest of the weekend!
The First Day on the Road
Warning, I am about to state the obvious. 26.2 miles is a long way to walk. I have to really admire marathoners, because I could barely walk that far let alone run. We did really well up to the 20 mile mark. We had some adorable cheerleaders from Rajesh’s class (one even made a sign that read, “Go Mrs. Bishnoi. Walk on!”) and Nini met us along the way with the kids. I was impressed that when it was time to go that Anya willingly left with Nini. After this interlude, I began to hit “the wall”. My feet hurt, my head hurt, my knees hurt, no need to go on, eh? I know that it was also hard about this point last year, but this year I was suffering from both dehydration and low blood sugar. To top it off, I developed an ugly heat rash on my feet and ankles. Luckily, there was a rest stop close by and we changed socks, hydrated, grabbed some great snacks, and lay down for a few minutes before heading out again. Next time (can’t believe I am contemplating this), I will cart ibuprofen along with me! Sanjay was suffering, too but he put on a much braver face. We did make it, though.
The Evening Program
We quickly went home to find two clean and fed children which was a blessing. I had to take a quick shower and head back to the Rice campus so that I could give an introduction to the national program director before the evening program. There weren't many people there, but as much as my body wanted to just crawl into bed, I wanted to get the most out of the whole experience. I am not sure how long I spoke, but I told the story about how I found my cancer after breastfeeding, the Stage IV diagnosis, and my hopes for the future. I explained the meaning of “metastasis” and that no one dies from a primary tumor to the breast. I spoke about how metastatic breast cancer can happen to anyone (young or old). I tried to stress how important it is to find more treatments for metastatic disease. You see, I don’t think anyone means to be offensive in their focus on the BREAST part of breast cancer, but I wanted to try and shift the focus to how do we try and save lives. I appreciated that the walk’s tagline this year was “The more of us that walk, the more of us survive.” By the end of my short introduction, I was almost in tears but I hope that I conveyed the urgency in the need to find new treatments for metastatic disease and prevent it in the first place. I am honored that they gave me a platform to try and get this message out.
The Second Day
Everything went very smoothly. We were walking fools after a brief warm up period! We started walking at 7:30 AM and finished by 11 AM. 13.1 miles is much easier than 26.2! I was filmed by the Avon Crew about my experience and then we were off to see our kiddos. Huge thanks go out our chauffeur, Sita, for bringing us to and from the walk. She was a lifesaver.
I have to really admire the staff and volunteer crew for the walk. They were at many of the busiest intersections making sure that we could cross safely. We asked one of the volunteers why he spent his weekend with us. He said that both he and his wife were out there every year, not because they had any personal experience with breast cancer but because it reaffirms their faith in humanity. I couldn't agree more. One of the greatest gifts of these kinds of walks (no matter how short or long) is that we belong to a community of people that are willing to give of their time and money to help their fellow Earthlings.
$2.1 million was raised by all of the Houston walkers and crew members. This resulted in eight grants that were given at the closing ceremony.
The Baylor College of Medicine: 1) $150,000 to support research into brain metastasis. 2) $200,000 to help support the partnership with Baylor and Ben Taub General Hospital (Harris County Hospital) and Quentin Mease Clinic.
University of Texas Health Science Center of San Antonio: $300,000 grant to support what causes cancerous cells to form.
The Sister’s Network: $25,000 to the only African-American breast cancer survivorship organization in the country to provide scholarships for educating women in Houston and around the country about breast cancer.
Alamo Breast Cancer Foundation: $50,000 grant to pay for survivors and advocates to attend the San Antonio Breast Cancer Symposium.
The Breast Health Collaborative of Texas: $50,000 grant to improve care coordination among low-income and uninsured women in Houston.
The Methodist Hospital Research Institute: $100,000 grant to support its Breast Health Initiative.
University of Texas, MD Anderson Cancer Center: $125,000 to support breast cancer nurse navigators at the Lyndon B. Johnson General Hospital.
Sanjay and I thank all of you for your financial, physical, and spiritual support through our cancer journey and though the Avon Walks. Together, we raised over $15,000 over the last 3 years to provide hope for those that suffer from this disease.
Hugs and happy thoughts to you all,
Only 3 Days Left!!!!!
Written Apr 17, 2013 12:31pmHi everyone,This will be a brief update on the Bishnoi household highlights.1) I have managed to survive Science Night! It went smoothly and over 327 WUES students attended.2) After today (assuming I hurry up and finish grading), I will be done with my Rice course.3) After this weekend, I will have the Avon Walk under my belt and there will only be my UHD class left.4) Sanjay has been asked to speak at the opening ceremony of the Houston Avon Walk (yeah!!!). He will get a minute to say why he/we have been doing this walk for the last 3 years.5) We have raised $5732.50 for this year's walk and over $15,000 over the last 3 years.6) Nini is coming this weekend and we couldn't be more grateful or excited!That is all the semi-important stuff. Like most of you, the events in Boston have left me a bit heavy-hearted. I keep reminding myself that these acts do not represent the majority of humanity (to paraphrase Patton Oswalt, gotta love his white blood cell analogy). We just have to keep putting one foot in front of the other and taking one day at a time.Please know that as Sanjay and I take many steps this weekend (92,734 or so), we will hold in our hearts all of those who suffer from metastatic cancer. Please let us know if you want us to walk in honor or memory of someone. Thank you again for all of your wonderful support, we couldn't have made it this far without you.Virtual hugs and happy thoughts abounding!Sandra