Give Support to a Colon Cancer Patient

I know it's been awhile since I've checked in with Cancer Nerd. Been quite busy with my MBA and a blog I have started with the women in my class, which you can check out here.

But today I write with something way more important. I received an email from a very good friend of mine, forwarded from a friend of hers. Please take a moment to read this and follow the link to Audra's Journey:

As most of you know one of my very best friends since the age of 9, Audra, has been diagnosed with Stage 4 Colon Cancer that has already metastasized to her liver. She is only 37 years old and after a long battle with infertility and losing her first son in-utero very late in the pregnancy she finally had Adam and Olivia her twins just 9 months ago.

Obviously, we are all devastated and shocked by this news, we are choosing to believe in the infinite possibilities and miracles!

I have started a website for her in which people can log on and read her story and journal entries. On this website you can also log onto her guestbook and send her a message of inspiration and support. Most of you know her but even if you do not please take the time to check in on this website occasionally and send her messages. Audra is a big believer in the power of thought and the more people who are sending love and light and energy the better for her healing and for her psyche to fight! I am begging that you do this for her. Lets make it a movement for her.

The website is www.caringbridge.org and her website name is: audrasjourney.When you get to the site it will say "visit a caring bridge website" this is where you enter, audrasjourney.

Thank you so much from the bottom of my heart.

Here is a direct link which should also work.

Please reach out and show your support to Audra today!

Cancer Quote Friday!

As we greet (or, in my case, start to wrap up) another fabulous Friday, with brains fried by the week and flitting toward the weekend, it is my pleasure to offer someone else's wisdom for your consideration.

The following is an excerpt from an article in the Stand Up to Cancer online magazine about caregiving. The article is written by Ellen R. Silver, who is a nurse and also the mother of a long-term cancer survivor. The article is a great read! As a former caregiver, I feel like caregivers cannot hear these things enough...

"No matter what, the relationship must remain the same. If you are a parent, continue to parent. If you are a friend, continue to do the friend things you always did. If you are a co-worker, continue to work as a team. If you are a spouse, continue your marriage in the same way and manner.

The roles might be changing in the relationship--perhaps now the caregiver is taking the prominent role in some decision-making or taking on some additional duties – but the relationship must remain the same in your heart, in your style, in your approach. Changing the innate chemistry between you as the caregiver and the person with cancer will cause great harm to the relationship during the cancer experience and for years to come. So the most important tip is – be yourself!"

Word.

Have a great weekend!

Open Letter: Is It Appropriate?

Breast cancer survivor Suzanne Somers has written an open letter to Christina Applegate, published on People.com. I'm a little dubious about this, as "Thighmaster" Somers clearly likes media attention... but she's a cancer survivor, she's been married for 31 years, and she has built a multi-million dollar empire in addition to her decades-long career as a television actress, so I suppose I can't knock her too badly. Plus, there are some good, positive thoughts here:

Dear Christina,

Cancer is scary, and lonely. You can't ask anyone to make decisions for you because it's just too heavy. There is a lot of 'rush to treatment,' when what you really need is time to research and think about how you want to approach this. Take your time Christina, there is no rush. Take your time and think it through. Use your cancer to learn and grow and as a force to work for you. You might choose to take an alternative approach. There are more options than the ones presented to you in the oncologist's office. You will make it. The success and drive you have had in your career will be the same strengths you will use to win over this nasty disease. And I am here if you want to talk to someone who was 'there.'

Sincerely,
Suzanne Somers

A nice gesture, I guess. But is this really appropriate, or is it just to get a little press? I am going to choose to believe that it's a kind, genuine gesture meant to give support from a breast cancer survivor to a newly diagnosed patient. Perhaps this letter will give hope to others as well. So... okay.

Now back to the Olympics!

Cancer Quote Fri - uh, Saturday!

Ok, so it's not Friday, but it is in the early morning hours of Saturday here in London - and the very wee hours in the States - so here goes.

I just uploaded my photos from my recent trip to the Midwest, and couldn't wait to share this quote from the Richard & Annette Bloch Cancer Survivors Plaza in Chicago. It is on the first of a series of bronze plaques that surround the plaza entrance.



The plaque reads:

"Cancer is the uncontrolled growth of cells. It is the most feared disease in America, because it is not understood, even though it is not the largest killer. If we understood cancer, we would not be as afraid of it. It is estimated that the average individual has a wildly dividing cell six times a day. The immune system recognizes this, kills it, and we never know the difference. When the immune system lets down, even temporarily, and these dividing cells get established to the point that the immune system cannot control them, we have cancer."

Upon further Googling, it turns out that Richard and Annette Bloch have named a number of these cancer survivor parks all over the USA. Richard Bloch, co-founder of H&R Block, was a lung cancer survivor (!!!) who died of heart failure in 2004 at the age of 78. After being declared cancer free, he and his wife Annette dedicated their lives to helping people with cancer. The R.A. Bloch Cancer Foundation website has some good information; a free e-book for cancer supporters; links to cancer articles and programs; and more. This is an incredibly positive site, clearly reflecting the attitude of its founder.

Ooh, heartwarming stuff! I love it! A great way to start a weekend.

The Doctor Factor Indeed

There is one more article from the June 23 issue of Newsweek that I have to write about, as it strikes a chord with me and I know it would strike a similar chord with many of the cancer survivors with whom I have worked as an advocate. The Doctor Factor is an important article that raises the issue of compassionate care.

I will say right now that I never met my stepdad John's oncologist. From the way John and my mom would describe this guy, he was big, gruff, and all business. I don’t think he was particularly offensive, but he did not exactly ooze bedside manner either. I'm sure he treated John as best he could, though the more I learn about chemo cocktails and New York's more prominent oncologists (who treated many of my colon cancer survivor friends), the more I feel like this guy was just not invested in John's treatment. Though, to give the oncologist the benefit of the doubt, John's cancer might have been so advanced there was really not much that could have been done beyond extending his life the 20 months that his generic chemo did. We never asked what stage he was - John made that choice and we had to support him in it. So, there's a lot I will never know.

What I do know is that many of my survivor friends went to the same handful of doctors, and have great relationships with them. I have never met a survivor who has heard of John’s oncologist. I have met some of these other doctors and they are absolutely wonderful people. Newsweek profiles a few more fabulous-sounding doctors, from D.C., New York and Boston. The article discusses the importance of genuine doctor-patient bonding, and how these relationships enrich the treatment experience for both parties. Compassionate doctors motivate patients to fight harder. Compassionate doctors don't spout pessimistic statistics. Being a compassionate doctor prevents burnout.

So why do so many doctors lack the very bedside manner that never fails to positively contribute to their patients' journey?

I can't imagine what being an oncologist is like, and I could never do it. But, trying to put myself in that position to answer my own questions, I suppose it's easier to not engage. I mean, how many patients do these doctors have, with how many different cancers, at how many stages? How can you possibly invest personally in everyone?

But how can you not? When I was the coordinator of the NYC chapter of the Colon Cancer Alliance, there were nights when I would come home from running a volunteer meeting and just cry my eyes out. The stories that came out of this one group of people were so surreal, so overwhelming. Stories of miracle responses to chemo, dozens of surgeries, fighting insurance companies. Stories of survival. Stories that bring goosebumps to my arms as I type - because I knew these people. I wanted to know them, wanted to befriend them, wanted to connect with them. And these connections have enriched my life more than anything.

This post is not a tsk tsk to oncologists who lack social skills or choose not to use them with their patients. Everyone handles tough life stuff differently, and the fact that there are people out there who choose to devote their lives to treating cancer patients is miraculous in itself. But I'm glad that Newsweek is making a point that compassionate care does make a difference. Because it does.

Another Fabulous Website: CaringBridge

I feel like I've been posting a lot about websites lately, but there are so many great free resources out there to help people, I can't help but get excited. This whole "Web 2.0" movement, as I am coming to understand it, has the potential to do such great things and enrich people's lives. It brings out the best in good people who sit at their computers wanting to do good things for the world. Who can argue with that?

Case in point: CaringBridge. It seems as if this website has been around for about 10 years, and I sorely wish I had known about it when my stepdad was sick. The site (and the non-profit organization that runs it) provides free websites to "support and connect loved ones during critical illness, treatment and recovery." Whether the critical time stems from a cancer diagnosis, a car accident, a complicated pregnancy, or anything similarly serious, this site allows for the creation of an interactive website with features including an online journal/blog, guestbook, photo gallery, an online communities so that the families on CaringBridge can reach out to each other.

When my stepdad John was sick, I remember sending out mass email after mass email, adjusting each email depending on the group to which it was sent - my mom's family, my dad's family, my college friends, my coworkers, my mom's colleagues. I didn't mind doing it, but there were many other things I could have been doing with that precious time. It would have been amazing to be able to have a website where we could post just once to update everyone, and be able to show John the guestbook entries written in support of him.

Well, if it couldn't happen for us, I'm glad that 100,000 other families (!!!) have used this service, and I hope that this organization continues to thrive.

To donate to CaringBridge, click here.