If you’ve read much of this blog, you know I’m pretty focused on pediatric brain cancer. That’s our starting point, both from a family’s perspective and from building of the database. But I have several friends in different stages of breast cancer diagnosis/treatment right now, and I really believe that our database will advance to the point where we are helping them, too.
For the moment, though, my resources don’t really extend into that world much. So I thought I’d reach out to the readers to see what words of wisdom you may have to share.
I found this website that I like: http://www.breastcancerdeadline2020.org/breast-cancer-information/quality-care-guide/access/getting-comprehensive-care/?referrer=https://www.google.com/
It’s got a good overview of what to look for when choosing a doctor, but there’s always more to it than what shows on “paper”. So here’s your chance to let us know what went well (or what went wrong) with your experience with breast cancer. Please comment with your experiences so we can help each other.
And yes, it is still Childhood Cancer Awareness Month, but cancer doesn’t wait for the appropriate month to rear it’s ugly head. I will take this one more opportunity, though, to ask you all to please vote (or continue voting) for Dragon Master Foundation on Instagram and Twitter. You can vote once per day until 9/23 on each platform by posting these tags: #vote #UpgradeYourWorldUSA and @dragonmasterfdn
If you’re an overachiever, you can also vote for our Australian friends by using: #vote #UpgradeYourWorldAU and @braintumourahoy
And you can still add: #HonestLovesMax to any Tweet or Instagram post through the end of the month.
If you are reading this, then you have access to the internet. You have vision (or a really good adaptive reading program). You have some discretionary time. You can make a HUGE impact on the world today. How? Just make a Tweet and an Instagram post for these causes:
- For Dragon Master, post: I #vote for @dragonmasterfdn to #UpgradeYourWorldUSA with the power of #bigdata
- For Max Love, post: #HonestLovesMax
- For Miss New York, post: Miss New York #MissAmericaVote
What will those three things do? 1. You could help win $50,000 for cancer research. 2. Every #HonestLovesMax post gets $1 donated to the Max Love Foundation 3. Miss New York has chosen childhood cancer as her cause, so she will bring a national voice to these suffering kids.
You may not think this is a big deal, but it is! Let me tell you why. This kind of project (internet/social media voting) doesn’t get a ton of attention. People vote once or twice and don’t vote steadily until the deadline. So it the prizes are sort of up for grabs until pretty close to the end. One big push from any particular group could see them leap ahead of the others. We have had consistent support, but the Upgrade Your World contest doesn’t end until 9/23. It is crucial that we continue to add supporters as the contest goes along. So please set a reminder to vote every day. And please ask your friends to vote. Ask multiple times because most people won’t see the first post. (They say the life of a Tweet is less than 3 hours, so you could post several times a day, and still not be seen by all your followers.)
If you want to help, but you aren’t sure how, then let me know. I’d be happy to help you get up to speed!
The Miss America Vote ends today, but you can vote for Dragon Master Foundation until 9/23 and tweet for Max Cure until the end of the month.
What I wish I knew before my late husband was diagnosed with a brain tumor…
|My husband, Steven, was diagnosed with an incurable brain tumor on February 12, 2009. We were blindsided by this news – his primary care physician said the MRI report showed a cyst or abscess and sent us to a local neurosurgeon. We sat in the examination room prepared to hear that it was nothing to worry about…..what we heard was “you have a malignant brain tumor”…and then all I heard was “wah, wah, wah” (similar to what the adults sound like in the Charlie Brown holiday specials on TV). Sharing the news with our children, other family members and friends was excruciating – how do you tell a 12 and 16 year old that their father has a mass in his brain that needs to come out? We spoke carefully with our children and gave them only the information necessary – Daddy has something in his brain and will have surgery. He will be fine! Not sure if they bought it or not, but they have both shared that they were grateful that we didn’t go into further detail with them and were optimistic about the outcome and longevity of Steven’s life.
I kept to myself for quite some time as I needed to muster my strength and hope in order to keep him with me and our children for as long as possible. I did extensive research on the disease and its treatments. I traveled back and forth to Duke’s brain tumor center and hospital with Steven, and I tried to maintain our lifestyle and acclimate to our new normal. At the suggestion of our clergy, I created and maintained a Caring Bridge page so that family and friends could follow our path. When, after 7 or 8 months post diagnosis, the myriad of emotions coursing through my body became more than I could handle I finally sought out others who could possibly understand my experience. I began an online search for support groups. I came across a few but www.cancercompass.com drew me in. It was there that I found so many who seemed to be living my life – my beautiful, yet painful life. A life of uncertainty, a life of hope, a life of fear, a life of “this can’t be happening” and “nobody knows how I feel deep in my heart, nobody!” I no longer felt isolated as I shared my own stories, asked my own questions and provided answers and comfort to others. Once I allowed myself to open up to these women traveling this same and yet different journey, a life-long bond was formed – a sisterhood. As author, Rachel Naomi Remen wrote “Everyone alive has suffered. It is the wisdom gained from our wounds and from our own experiences of suffering that makes us able to heal. Becoming expert has turned out to be less important than remembering and trusting the wholeness in myself and everyone else. Expertise cures, but wounded people can best be healed by other wounded people. Only other wounded people can understand what is needed, for the healing of suffering is compassion, not expertise.”
Steven and I already knew that there were many gifts that come with a cancer diagnosis – yes, you read this correctly, there are gifts, but one has to be open enough to recognize them. The gift of waking up beside one another each morning and going to sleep together every night. The gift of sharing our love with each other and our children. The gift of being able to say all the things we wanted to say (of course, there is never enough time to say it all but we shared a lot with one another over those 22 months), and the gift of being part of a community – a brain tumor community. I cannot imagine how I would have managed through the remaining year of Steven’s life, as well as after his death, without my GBM soul sisters. English novelist, Mary Anne Evans, better known as George Eliot said “What do we live for, if it is not to make life less difficult for each other?”
One cannot travel this road of illness and caregiving alone… it takes a village, truly. I am eternally grateful for my internet village and my local village. As I write this six and half years years post diagnosis and four and half years after Steven’s death, I still recognize the blessings that come with this life I am living. My local community and my internet family made life less difficult and offered me refuge when I needed it most.
For anyone caring for a loved one with a life threatening illness, you do not need to struggle alone. There are those waiting in the wings wanting to help, love, support and guide you. Be gentle with yourselves as you learn to navigate your “new normal”. There are so many just like you wanting to be comforted and wanting to comfort. Trust that your journey will bring you to those people.