Spreading the Word Part II: Tuesday, March 17, 2009

Below is a slightly modified version of the St. Paddy's Day email I sent members of my father's family to drop the cancer bomb on them. I felt a little guilty about sending my family an email to let them know about things but as you'll read in the note below, at this point in the diagnosis process, I really needed to avoid tear fests so I went with the mass email. I still think it was a good decision and they all seemed to understand.

Subject: Happy St. Paddy's Day!

Hello everyone!

Happy St. Paddy’s Day to you all! I don’t know about all of you but I’m really hoping for some of the luck of the Irish this year. I apologize for the mass email but I have to be as efficient as possible and avoid unnecessary highly emotional situations these days. I’m writing to let all of you know that last Tuesday, March 10, I learned that a uterine polyp my doctor removed in the hopes of correcting a persistent uterine bleeding problem was cancerous. I also learned that my final radiology report from the ultrasound that showed the uterine polyp also showed multiple malignant-looking endometrial cysts on/in my ovaries. Yes, a big bummer indeed. So, what does all of this mean? Here goes…

Earlier today I had my first of several appointments to select an oncologist. The appointment went as expected: The doctor (Dr. Elkas, who practices at INOVA Fairfax Hospital and comes highly recommended from multiple sources) laid out three likely scenarios ranging from very good news to pretty bad news and we discussed next steps in my diagnosis and treatment, including all of the various places where I will be getting second and third opinions (by the way, they include the Georgetown University Lombardi Cancer Center and Johns Hopkins University – both for my pathology, diagnosis, and treatment). The potential scenarios are as follows:

1. I am very lucky and simply have Stage I endometrial cancer confined to my uterus and really bad endometriosis on my ovaries. In this scenario, it is likely that a doctor would “zap” the endometriosis and do another D&C on my uterus to make sure all of the cancer was out. After that, I’d probably be treated by taking progesterone only (estrogen is NOT my friend these days) and monitored very closely. But I’d get to keep all my parts, so that would be great.
2. I am pretty lucky and have Stage I endometrial cancer in my uterus and Stage 1 ovarian cancer in my ovaries. In this scenario, it is a given that a doctor would perform a total hysterectomy (so my ovaries, uterus, appendix and some lymph nodes would be removed). It is also highly likely that I would receive some targeted chemotherapy but they won’t know about that until they see what’s inside. This and the next scenario are unfortunate because I would be left infertile and would begin menopause…and I’m not anxious to join that club anytime soon!
3. I am not so lucky and have Stage III endometrial cancer (endometrial is a kind of uterine cancer) that has metastasized onto/in my ovaries. In this case, like the last, I would have a total hysterectomy and would likely have six rounds of chemotherapy three weeks apart (total treatment time of about 4-5 months including the surgery).

What next?

· At the end of this week or early next, I should receive my pathology consult results back from a renowned Hopkins pathologist. It is likely that his consult will simply confirm my results from Alexandria Hospital but Dr. Elkas, and probably all others, are anxious to see what he says.
· In the meantime, I’m working with Dr. Elkas’ scheduler to schedule a CAT scan, pre-op appointment and my surgery, which will likely be the week of March 30 or April 6.
· During all of this, I will be meeting with a reproductive endocrinologist and two other oncologists for their opinions on my case.
· Fortunately, my fertility is an “all or nothing” scenario that can only be addressed after my surgery and diagnosis. I will either be cleaned up and fine or I will have a hysterectomy and be infertile. This is somewhat of a relief to me right now because the last thing I feel like spending energy on is figuring out who can freeze my eggs, etc. (FYI – no doctor will touch my ovaries for various ethical reasons until they know they are cancer-free.)
· Oh, and in addition to all of this Western medicine, I’m also seeing an acupuncturist, a nutritionist, and my cousin Heather might try some Reiki therapy on me as well.

So, how am I doing?

As Granny can attest to since we spoke this past weekend, I am doing well. Or, as well as can be expected. (Granny, sorry for fibbing about what’s new but I wanted to wait to say anything until I had just a little bit more information.) Anyway, I shed a few tears (not many actually) when I initially found out what was going on but have since spent more time delving into research, coordinating the shipment of pathology reports, and making doctor’s appointments than feeling sorry for myself. Here’s the thing: Shit happens to good people every day. I believe that I’ve been dealt this hand because God (or whomever you think might be running things in the world…) knows that I can handle it and that I will be fine and that I will do something positive with my experience (currently, I’m contemplating starting a blog, writing a book, and/or trying to garner media coverage about my diagnosis and treatment…).

Again, I’m sorry for the mass email but I’ve shed my tears and have moved on and I need to let all of you shed your tears and get in the right frame of mind before we speak or see each other during Gail and Chris’ wedding weekend, which I’m very much looking forward to. I just don’t have the time or the energy to comfort people right now and I hope all of you will understand that. Also, PLEASE RESPECT MY WISHES AND ONLY DISCUSS THIS WITH THE PEOPLE ON THIS EMAIL WHO NOW KNOW ABOUT THIS. THERE ARE OTHER FAMILY MEMBERS WHO DO NOT KNOW YET AND WHOM I’D LIKE TO TELL WHEN THE TIME IS RIGHT.

So, that’s it. Read it and weep and then, if you like, you can call me to talk.

Love to you all,


No comments:

Post a Comment