Editor’s Note: A very special welcome to Laurie Orloski who will be a regular blogger on Four Square Clobbers Cancer. Laurie is an experienced writer who will also be able to provide us with her expertise in the field of oncology pharmaceuticals. She is planning a special event in 2014 that will benefit childhood cancer and she wants to take our readers on her journey. We look forward to traveling with her. Welcome to Four Square Clobbers Cancer Laurie!
By way of introduction, I am a mom to 2 and 5 year-old girls who have been healthy to date (knock on wood) and a year-old Jack Russell Terrier, who is healthy physically but a mess mentally. Anyone who really knows me would probably describe me as someone who likes to run, likes the Muppets, and knows a lot about cancer. I like to run because for me it is a fun way to stay in shape. As a plus, I get good (but admittedly odd) ideas when I run, which I attribute to the extra oxygen from the fresh air. I like the Muppets because they remind me of being a kid. My personality is a lot like Kermit’s, a combination of no nonsense/serious yet goofy, if that makes any sense. I know a lot about cancer because I have a doctorate degree in pharmacy and interned in a major cancer center for several years, and even spent six weeks at St. Jude Children’s Research Hospital right before Christmas of 1997. However, after graduating, I fell into a desk job as an oncology medical writer. For the past 15 years, I have been reading and writing about lots of different adult cancers but no pediatric ones. All of my project work is sponsored by the pharmaceutical industry.
So how did I land here, on the Four Square Clobbers Cancer blog, of all places?
I, like many of you, lived through the horror of a rare and aggressive cancer. The patient was my mother, who passed away in 2009 after a 9-month battle with something called a uterine carcinosarcoma. Maybe you’ve heard the even more complicated term of “malignant mixed Müllerian [or mesodermal] tumor” or MMMT (pronounced triple M-T)? In all likelihood, you have never heard any of these ridiculously confusing terms. Uterine carcinosarcoma/MMMT are very rare and occur in only one or two in 100,000 women. Fortunately, most oncologists will never see a case of my mom’s cancer during their entire careers. As an added bonus, there appears to be no genetic basis, which is excellent news for me and my daughters. Unfortunately, however, their rarity means that they are poorly understood. The bottom line is this: unlike more typical uterine or endometrial cancers (without the “sarcoma” part), which are often highly treatable and have a good prognosis, my mom’s tumor type has among the worst possible prognoses of any type of cancer period. My mom’s MMMT was extra weird (go Ma!) Her cancer cells had features that are most commonly seen in pediatric sarcomas. Even more mind boggling, my mom was so previously healthy that, in fact, she was able to tolerate nearly $250,000 (yes, quarter of a million dollars, if you tally up the amount billed in her library of medical statements) worth of treatments and procedures over a nine (yes, nine)-month period. So, well, thanks Ma for pretty much getting struck by lightning! There is a lot more to her story, to be shared at a later time.
So back to the question of why am I here, specifically in the childhood cancer community, not the MMMT universe?
I could write a 10,000-word essay to get to the answer, but I am going to skip to the conclusion:
As far as my mom and her bugger of a MMMT are concerned, the only possible worst-case scenario would have been if my then year-old daughter had been the one to have been diagnosed with cancer on October 21, 2008 (my birthday, by the way, lovely piece of trivia). Today, as I reflect on it all, I cannot think of anything more horrific than if one of my daughters or ANY child were to go through what my mom did. Yes, my mom’s cancer was 10 out of 10 bad, yet I do know there is still worse out there. I want to help the kids.
On Aug 5, 2009, any hope for dear Ma’s survival was suddenly lost and we were arranging for an ambulance to take her back to her home, which was about 2 hours away. At the same time, I was calling her friends and coworkers to let them know she was coming home but that she was bedridden and was returning only for goodbye purposes, and that it was imperative that they come by to see her during this “pseudo-viewing/wake for the living” no matter how difficult it would be for them. I was very matter of fact in what I said but there is no word to describe my emotions, how I really felt inside. Physically, I literally felt like I was the one dying. We thought she had at least days and maybe even weeks to be at home but, as it turns out, she actually only had about a day and never made that trek. She died in the hospital, early morning of August 7, 2009. It was probably for the better, but who knew, right?! I would say she did. Deep down, I knew too but wanted so much to believe that I could get her home alive as our final challenge together. Regardless, we were fortunate to have our little goodbye conversation when we last spoke on August 5, which was quite the chat. For example, we laughed about whether or not she wanted to spend eternal life with a wig, as her mom (my grandma) had died of breast cancer and was buried with her wig. But my mom hated her wig and her shag equally, so I had to ask! She asked me what I thought, and I did just that. I told her she looked beautiful as she was (wigless), with her very modelesque short shaggy ‘do and she agreed that there would be no sporting of a wig in the after life.
But there also was the following exchange, which is most pertinent to this blog. For context, my mom was a very sweet, pleasant lady with spunk but did not question authority and did not enjoy or seek out conflict. She had lost practically everything as of August 5—including the ability to walk, any desire to keep fighting, and her trademark puffy hair—but she had managed to retain her mind (that seems to be the one and ONLY place that the cancer did not go) and school girl-like charm and smile.
So here it goes, as if the wig exchange wasn’t enough…
Ma: “I’m so proud of you. You have every one of those doctors hating you.” (Laughter, with an affirmative head nod from me. Note: “hating” is not a typo and was not intended to say “loving”)
Me: “I think I may have missed my calling, as a patient advocate.”
Ma: “Yeah, you would be really good at that.”
It had been about a year since the “step-off grandma” and “peas and carrots” photos above. Macy’s hair had sprouted while grandma’s had shrunk! It took every power of persuasion to convince my mom to participate in a family photo shoot. She told me she felt ugly. Her puffy hair was gone but her face was puffy from her meds, she was crying at the notion of taking pictures. But lots of yapping from me and genuine compliments of her modelesque shag, which I could never pull off like her and she came around. Ma was rushed to the ER a few days later and died about a week from when this was snapped. I think she would approve of me posting this last “peas and carrots” pic here…but if I get zapped by lightning, the source will be obvious!
On that note, I’m gonna wrap up by saying how proud I am to have rubbed off on my girls. They are about as opposite as sisters can be (think girl versions of Bert and Ernie) but both love the Muppets and running. Hopefully though, they will stay healthy, grow up to be strong ladies, and know practically NOTHING about cancer—other than it being this easily clobbered and cured obscure entity that is simply “nothing to worry about.”
Take care, until next time…
Thanks for being an advocate, great mom (and daughter) and excellent writer!!! My dad lost his 9 month battle to lung cancer 2 years before my son Steven was diagnosed with Stage Four Osteosarcoma. I certainly never expected my son to experience cancer at such a young age. We never know what is waiting for us as we move through life.
I look forward to reading more of your blogs.
Thank you, Angie, for your kind words and support! I cannot imagine how you felt when you heard the words ‘stage 4 cancer’ in reference to your son, and so soon after your dad. With lots of cancer in my family (especially my mom’s side), I cannot help but worry about the kids in our family. But I’m finding that the best medicine for my own worries is to take action, with hope that future generations will not have to endure what we have had to! More later…Laurie
Thank you so much for sharing your story and I am so sorry for your loss. My mother was also recently diagnosed with this strange and horrible MMMT, we don’t know the stage but 2 months ago she started bleeding out of the blue, she lives in Vancouver, Canada and is about to undergo surgery next week, which I will be there for. We have done research and she’s trying alternative treatments with naturopaths who have cancer specialty, on top of surgery and who knows what else. We hope to have a good outcome for this otherwise very healthy grandmother of 9, and hope to share good news and help others out there. Thanks gain and I love your attitude and smile in the pictures. I can tell you are a super fun person. I have 3 children, including 2 daughters that I worry about, of course now that this hurricane has hit our lives.
Hi Connie, thank you so much for your note. My mom’s prognosis was particularly poor, as she was initially diagnosed with and treated for ovarian carcinoma…the revelation that it was a uterine MMMT came too late. But it sounds like your mom is starting off on the right path, unlike mine, so that is good to hear! I would suggest having her surgical and pathology reports reviewed by more than 1 institution, if at all possible, especially given the rarity of this entity…at least a second opinion too, when it comes to all the treatment stuff.
There is not a lot of info out there, but I know there is a yahoo support group: http://groups.yahoo.com/neo/groups/UterineMMMT/info
Back in 2009, I had a really hard time finding much of anything. I had come across a blog that someone had developed after his sister’s diagnosis…I wrote up the ‘clinical trials’ tab for it, to help him out…might be worth checking out, although I am not sure how current it is or the extent to which it is maintained: http://gynommmt.wordpress.com/
In more recent years, I had come across some very inspiring success stories via google…I look every so often in hopes of finding favorable news, even though it does not help my mom of course.
I wish you all the very best…feel free to e-mail me going forward (email@example.com)…lots of optimism directed your way as you push through this!
Pingback: Mad as Hell…maybe | Four-Square Clobbers Cancer
Pingback: Seeing is Believing: | Four-Square Clobbers Cancer
Thank you for this article. My mom died last year (2013) on Mother’s Day from this awful form of cancer. She survived six months from diagnosis, with surgery, aggressive chemo and radiation. It is so under-known and so under-talked about. If I can help you spread the word or advocate for research, please let me know. Kelli@imsrightroad.com.
Pingback: Shocker of a Vacation | Four-Square Clobbers Cancer