When cancer research gets personal
I’m honored and excited to share that I will be again joining LIVESTRONG at the annual One Voice Against Cancer lobby day in Washington, DC. I’ll be joining other cancer advocates to meet with our federal legislators to talk about cancer research, access to care and more. You all know I’m super passionate about cancer advocacy and helping others. These events really get me excited and inspired! (Read about my experience last year.)
One Voice Against Cancer brings together organizations, like LIVESTRONG, American Cancer Society Cancer Action Network and many others, to work with Congress to keep fighting cancer a priority. Working in collaboration helps deliver a unified message to Congress and the White House on the need for increased cancer-related appropriations and lets people touched by the disease share their personal stories related to these issues.
Many of you know how important cancer research is to my family. Thanks to research finding new treatment options, we were able to stay one step ahead of my dad’s multiple myeloma for six years past his diagnosis. Thanks to research conducted decades ago, I was able to undergo a surgery that removed my bone cancer and replaced my femur with a titanium rod rather than amputation. You can read more about research’s impact on my bone cancer diagnosis here.
As I find myself clearing breast cancer from my life and making the difficult but necessary decision to undergo four rounds of chemo, I am frankly fascinated and humbled by the advancements in cancer treatment, thanks to continuous pushes for funding for research, new treatment options, access to care, preventive screenings and more. Want some real life examples? Here’s a few that I’m blessed and grateful to benefit from:
Preventive screenings. I’m very faithful about being proactive with health screenings, follow up care with doctors and more. A 3D mammogram saved my life. My breast cancer tumor was less than 1cm in size (smaller than a pea). Certainly not something I would feel. But the mammogram caught it (and an amazing technician) before it could advance and spread.
Surgery techniques. My tumor thankfully was small enough that I was able to keep my entire breast through a lumpectomy. However, we still needed to ensure no cancer had spread to the lymph nodes so I underwent a sentinel lymph node dissection. This entails injecting radiotrace and a blue dye that travels that path of potential cancer cells from the tumor to the lymph nodes and ‘lights’ any possibly infected nodes. I only had two turn blue, which were removed and came back negative, and I will have no lasting side effects of long-term swelling or restrictions. Amazing!
Lowering recurrence risk through pathology testing. My breast cancer was thankfully caught very early stage and I had zero lymph node nor surrounding tissue show cancer. So I should have “only” undergone a lumpectomy and minimal radiation treatments. And my risk of recurrence in the future should be almost zero. However, decades ago doctors started noticing that women with my early stage diagnosis were showing recurrence 15-20 years later. Clinically this shouldn’t be happening. So additional research was conducted on these early stage tumors. And it showed that certain tumors showed a potential high risk of recurrence. Chemo was tested on these tumors and after a big study was released, it was determined that chemo can lower long-term recurrence risk. The Oncotype test scores tumors of breast cancer types like mine to determine if chemo would be a benefit. My surgeon sent my tumor to be scored and unfortunately it is higher than we wanted. 🙁 I was honestly devastated by this score because it meant I had to take chemo. I was more upset over this news than hearing breast cancer showed up. But the addition of chemo to my treatment plan lowers my risk of future recurrence from 30% to less than 4%. It’s hard to argue with that. And in the end, I’m grateful that this test is available to ensure cancer never shows up again.
Medications to minimize side effects have come far in the past 20 years. One example is those to help your blood counts rebound after chemo tries to knock them out. My bone cancer chemo treatment was very aggressive (inpatient three weeks in a row, then two week break, then back again for three weeks and so on for about 13 months). Chemo caused my blood counts to drop so my mom had to give a medication shot in the stomach for 10 days after the third week of chemo to try to keep my immune system from bottoming out. I still ended up in the hospital with an infection and had 43 blood transfusions. Today, the nurse puts a Neulasta ‘patch’ on my arm after chemo infusion ends, it injects medication to kick my bone marrow into overdrive, I get another boost the next afternoon and the patch comes off that evening. So far my blood counts have been coming back normal so it’s working!
Cold capping. I was honestly on the fence about chemo when I thought of losing my hair again. But my oncologist quickly told me about an option to wear a cold cap through infusion that could minimize hair loss. I was immediately on board. I have shed about 10 percent of my hair since my second chemo dose ended but I’m truly thankful to have any hair at this point and have heard that regrowth following chemo happens pretty quick. It’s been really interesting to try this technique. There are too many women and men who aren’t aware of this so it’s become an important issue for me to raise awareness of as I think it’s a huge option. I’ve been able to go to work, out with friends, run errands and more without people knowing I’m going through chemo and it’s pretty awesome. This process was developed in the UK and Australia, however, I recently learned that the FDA approved a process in the U.S. and select insurance companies cover some of the costs (although most consider it cosmetic so won’t cover, which makes me mad but that’s a soap box for another post!). (Read a little about my cold capping journey).
In the midst of treatment, all of this dawned on me and made me smile, then cry tears of gratitude (I’m blaming ALL of these tears on chemo….because I can, lol). I can’t describe how humbling and amazing it is to benefit from these advances in medicine. There is something cool about knowing you’ve dedicated your time and energy to pushing for these type of advances, and yet sobering to actually be a recipient of the outcomes. I’m incredibly grateful for the thousands of people who also work tirelessly to make a difference in others’ lives, like mine. I can’t wait to go to Washington, DC with other cancer advocates to ensure these type of advances and others continue to happen.
If you’d like to make a difference in the lives of cancer survivors, consider getting involved with great organizations like LIVESTRONG, American Cancer Society Cancer Action Network, Cancer Support Community and National Coalition of Cancer Survivors.
This is really important to me – The current administration’s recently proposed budget drastically reduces funding for medical research – a proposed $4.7 billion cut to medical research at the National Institutes of Health (NIH), including nearly $900 million in cuts for the National Cancer Institute (NCI). The budget also calls for $34.5 million in cuts to important cancer screening and prevention programs at the Centers for Disease Control and Prevention. This is unacceptable and detrimental to our communities and our lives. I’ll be meeting with my legislators about these concerns while in Washington, DC. You can help right now by contacting your representatives to ask them to not support the proposed cuts and instead focus on saving lives. It’s easy! Click this link for pre-written template. Thank you for helping to fight cancer and save lives, like mine. xo
12 thoughts on “When cancer research gets personal”
Kudos to you on winning you battle. So glad to see you are working so hard to save the lives of others!
Thank you! It’s motivating to help others. 🙂
Wow!!! I’m so happy to know that you’re working hard by joining organizations to help others who are still struggling with cancer. I do hope that your voice and community gets louder and bigger. Great work
Thank you for your kind words! I believe there are great opportunities in working together to make a difference. 🙂
Thank you for your hard and inspiring work! Collaborating with the multiple organizations is huge. Many small voices can be easily ignored, but one loud voice is another story. Keep up the great work!
Thank you! Yes, it starts with one voice and then coming together with a combined message and effort make a huge impact.
Oh wow I didn’t know they were trying to make these cuts. I too am a Cancer survivor 6 years strong. Thank you for your work in advocacy!
Congrats on your survivorship. 🙂 Such a wonderful feeling! These proposed cuts would be terrible. Hopefully we can stop and put money into important research.
This does get personal for me for sure. My husband just went into remission from Folicular Lymphoma this past year. We are truly blessed. Thanks so much for sharing your story and this very important info.
Great news on your husband’s health! Sending continued positive vibes for his good health!
A brief word of both thanks and kudos for your work, Heather…..actually ….the thanks is for YOU….for who you are as much as for what you do. Though I do not have cancer, your words….your life example…move me more than I can articulate. It is a privilege to know you and to join with TeamLivestrong.
You are so kind, my friend! I truly am motivated and encouraged by friends like you, especially during challenges, and am grateful for you.