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Monday, December 30, 2013

In Memoriam – Good bye, 2013

At the end of any given calendar year, Western culture likes to take stock of who we lost during the year ending. I thought that I would do my own smaller version of this popular custom.

As some of you know, I follow a handful of cancer blogs (a handful meaning five). In 2013, three of those five bloggers died of their cancers. The following is a brief roll call:

Blog: My Lung Cancer Odyssey - /
Blogger: Patrick Leer


Originally blogged his experiences as a caregiver of his wife who suffers from M.S. before being diagnosed in December of 2011 with Stage I adenocarcinoma which turned to Stage IV in April of 2013. He died this past November. Patrick reached out to me when he was still Stage I and asked if he could list my blog on his blog. We corresponded every so often via email. He regularly commented to my blog posts with encouraging comments. He taught me how to do the same with others.

Blog: Eyes Peeled Always -
Blogger: Karin Diamond


Diagnosed in 2009 with Stage IV Hodgkins Lymphoma at the age of 26. She was an English & Journalism major so her blog is very well written. She has several publications to her credit including being a guest blogger for the Huffington Post. After spending years chasing various treatments, Karin died in September of this year.

Blog: Wisteria Melody -
Blogger: Caitlin Meharry


I found this blog purely by accident shortly after my diagnosis when I was looking for Christmas cookie recipes and decoration ideas. She was diagnosed with adenocarcinoma of the esophagus in January of 2011. After surgery to remove part of her esophagus & make the remainder functional, she was deemed cancer free. In August 2012, a regular scan revealed metastases to her lungs and lymph nodes. She eschewed more chemotherapy and died in March of this year at the age of 26. Caitlin was a Seventh Day Adventist and lived her faith in inspirational ways. It is her voice that I miss the most.

I face 2014 with no more treatment options available to me. I’ll be looking for trials and will hopefully be matched with one that uses immunology.

Whatever happens, I hope that, as with Patrick, Karin and Caitlin,  I can offer something good to others through my own blogging. God is with us.

Wednesday, December 18, 2013

Sugar and Vinegar: A Story of Two Sisters

I have one sister. She is a few years older than me and since my birth, we have pretty much been at odds (well, not since the cancer). The main reason, I believe, is that we are very, VERY different people.

Cathy is a tender woman - very nice and kind, sweet-tempered and compassionate. She is a great hostess and will listen with great patience and tolerance to whatever (inane or vapid) thing that people have to say. People love her.

I, on the other hand, often times lack tact. I give my opinion whether it's asked for or not, and can respond in rather brusque ways. I do not have a poker face. If you say something that I think is idiotic or nonsensical, my face will say that to you long before my tactless mouth does. Honestly, I can be a bit off-putting.

Our childhood was full of arguments and fights and me embarrassing her and her annoying me, but secretly, I always envied her. I also always worried about her. Especially as we began to age. The women in our family tend to live well into their nineties. Most men die in their seventies. What would happen to her during those very vulnerable 20+ years after her husband had gone to his reward and she was alone? I didn't worry about myself being alone because I love it. crave alone time. She, however, has always loved being around people.

So even though we weren't on speaking terms at the time,  I built this very elaborate fantasy about how we, after our husbands had croaked in their 70s, would move in to an old house together with a bunch of cats (and one dog, at her insistence). I also recognized that, because of our respective natures, the neighbors would probably love her and find me off-putting (see illustration below).

Unfortunately, cancer has interrupted my fantasy and what I thought would be a sure thing, is now everything but.

As much as I hate to admit it, it has been the cancer that has brought us together, so perhaps the fantasy is now. Happy Birthday, Cathie. With all the love I can send. ~ Ruthigus

Sunday, December 15, 2013

The Marks of Cancer

There is a lot of talk among folk with cancer, breast cancer in particular, about living with its scars. Women with breast cancer sometimes have their breasts removed - some of them have reconstruction, the bolder among them do not. A new claim is being made in a recent commercial that women have a special, life-long relationship to their breasts. The implicit message is that having them removed is particularly costly psychologically.

Although I think this notion of having a special relationship to one's body parts is beyond ludicrous, I understand that having a part of you removed or cut into is very difficult to cope with. When this happens, your body becomes something of an object to you. There comes to be an explicit delineation between the physical self and the mind self when one has surgery, or serious a condition/illness, so much so that some people talk about feeling as if their body has betrayed them - like it has a mind of its own and that one day it decided, "Hey! I think I'll grow some deadly cancer cells today! You think Ruth will be upset? Well, f@ck her! Yeah!"

Anyway, after my most recent surgery, I was thinking of all of the scars I have collected in the last three + years. Since no one in their right mind wants to see my scars for real, I have created a cartoon so you can see the marks that cancer has left. Know that before cancer, I had only been in the hospital overnight once for a kidney stone and twice to have my children; hence, the expression on Cartoon Ruth's face:

I do not have a special life-long relationship with my breasts (It would be very one-sided if I did as they don't have much to contribute). What I do have is a life-long desire to have a healthy mind and body. These scars that I carry, just like those who have breast surgery, do remind me of my cancer every day and that's hard. But each scar functions, in a way, like a tattoo (shout out K-A). Like a tattoo, each scar is a memory on the scrapbook of my body. Each reminds me that without it I would probably be dead already. Each reminds me of how much my mind and body can handle while continuing to function well and happily. Each also reminds me of each person who has helped me through these challenges, be it my doctors and nurses, my friends, or my family. What a lovely thought...

                ....I'd rather have the tattoos.

Wednesday, December 4, 2013

Living in the Land of Cancer Statistics

When you are diagnosed with cancer, you become aware of statistics – painfully. People, even doctors assure you that statistics are just that – statistics, and that they don’t speak to the “individual experience.” Nonetheless, there is still a very explicit desire among those who have cancer to “beat the odds.”

After a recent brain scan, it was suspected that I had Leptomeningeal Carcinamatosis, which is cancer of the covering of the brain and spinal cord. The survival statistics for this cancer are beyond grim – four to six weeks without treatment and two to three months with treatment.
I’m not ashamed to say that I was shaken to my proverbial bones.

Even though it is somewhat rare – 5-10% of NSCLC (Non-Small Cell Lung Cancer) patients get it eventually, I was hoping like a mad woman that I was in the majority statistic this one time, thinking, “Come on, 90%!” And, happily, after having a spinal tap (it’s not just a movie anymore), I found that the results were negative.

Now that that’s over, my onc thinks that I should try to get into a clinical trial where they’re testing a immunology drug. So this Friday, it is back for another VATS surgery to get the hefty tumor sample required for genetic testing. Being part of a study, means dealing with more statistics.

Lung cancer world is full of statistics and, at stage IV, the statistics are pretty freaking bleak. Here are some of the Lung Cancer/NSCLC stats. I’ve placed an ‘X’ next to those where I fall into the minority and “beat the odds” so to speak, and not always in a good way:
1 – In the U.S., 30% of people are diagnosed with some form of cancer.  X (I’m also an oddity because I have no family history, never smoked, and had a very healthy lifestyle.)

2 - In the US, lung cancer comprises 14% of cancer diagnoses but a full 27% of cancer deaths. X (There was a point in the diagnosis period when we were hoping for breast cancer. Can you imagine hoping for breast cancer?)
3 - NSCLC comprises approximately 84% of all lung cancers.

4 - People diagnosed with stage IV lung cancer have a mean (average) survival rate of 10 months. X  (3 years and counting!)
5 - Of the people diagnosed with stage IV lung cancer, 54% will have a treatable genetic mutation that responds to oral therapies (although it does not increase survival times).  X (I have no known mutation, treatable or otherwise.)

6- Of the people diagnosed with stage IV lung cancer, 60% have a cancer that grows because it has turned off their immune system as it relates to lung cancer. (TBD – I’m hoping to follow the crowd on this one.)
7 - Of these 60% who have undergone immunotherapy for the above, 24% have quick, positive, and long-lasting responses (meaning, the immune system starts fighting the cancer and the cancer shrinks).  (TBD)

Crossing my fingers for that 24% of that 60%.
Gotta love statistics!