I will preface this by saying that I’m writing this in a stream of consciousness with zero editing because that’s how I feel right now. I just want to see what comes out and be as honest as I can in the process. I’m writing this on Tuesday, November 17th, 2009 after my day of tests at MD Anderson.
Wow…where do I begin? For those of you who don’t know, on November 12th, I celebrated my 18 month cancerversary from prostate cancer and was sitting in Austin LiveSTRONG Young Adult Alliance Conference with something heavy on my mind the whole time, more on that to follow. In regards to the prostate cancer, I still have focal positive margins but am coming up at less than 0.01 on my PSA scores so I’m okay with that. I’ll be on the eternal wait and see method of observation with the hopes of not having a recurrence. I am praying that they got all of it out when the removed the surrounding tissue along with my seminal vesicles, lymph nodes, prostate, urethra section etc. when they did my surgery last year. So…with that said…everything has been cruising along fine until I head down to Austin for the LiveSTRONG Challenge. The ride was great but I ended up feeling pretty sick that evening after the ride ended.
No…it wasn’t cancer, it was the flu..more than likely the H1N1, but who really knows. That’s what they suspected since that’s all that they are seeing in the Houston area. Anyway, my friend Susan Rafte helped me out by recommending a clinic for me to go get checked out at. The doctor there does an amazingly thorough exam and the next thing I know he’s feeling my boobs and gets this look on his face…not a look I was expecting. He finds a lump, a painful lump at that. My first thoughts were the classic, WTF? Then I hear him say that I have to go down and have an ultrasound and chest x-ray. Okay. So that’s not what I went in for but I’ve been there before so let’s ride this out and I expect to hear hear him say, “It’s nothing Lynn…go enjoy the day and kick this flu’s butt!”
Results of Ultrasound: Inconclusive.
What??? I immediately call Susan, whom is also the Executive Director of “Pink Ribbons Project”, on the “Voices of Survivors Foundation” Advisory Board and a dear friend. My first word: “Help!”
Now here’s the irony, I had been talking to Susan about needing to find a male breast cancer ‘Survivor’ to share his ‘voice’ with “Voices of Survivors” to bring about more awareness of this for men. I, however, was not applying for the position! In fact a few days later, I’m sitting with Susan and two male breast cancer ‘Survivors’, both of whom ended up sharing their ‘voice’ on “Voices of Survivors”, talking about breast cancer. Let’s just say that my stomach was doing some flips during the conversation. I was focused on their stories but at times, their stories triggered me into that momentary state of panic. It passed and no one in the room saw my hands sweating. I could pretend that I’m this non-feeling, zero-fear executive director of a non-profit who deals with cancer every day and…blah blah blah…but the reality is that I was scared!
Those of us who have been diagnosed with cancer know that horrible feeling of hearing those three words, “You have cancer!” I just hoped that I would never hear them again, especially with them being attached to a possible second primary! That’s what I was facing from that day in the doctor’s office until this morning at 7:15 a.m. when I arrived at MD Anderson. Okay…so now fast forward to me walking into the office and having my first conversation with the intake nurse and getting my MD Anderson Patient ID Card. Yep, I’m an official club member now of a club I never wanted to be a part of but since I’m in Houston, this one of the best clubs to belong to if you have to have one. My mom and her friend picked me up this morning so that I wouldn’t be alone. My friend Susan, offered to meet me there as well since she’s basically an expert in this breast cancer arena, being a two times ‘Survivor’ herself. If you don’t know her story, go check it out in the ‘Written Word’ on “Voices of Survivors”. It’s a great one. Okay, I digress…back to my little adventure.
Rather than get into all of the little details of what happened from one test to the next, I’ll talk about what I felt. I talk about cancer all day and have so many friends who are ‘Survivors’ both online and offline. I’m surrounded by an amazing community of people who have always been there for me and whom I try to be there for as well. I have a loving family who cares deeply for me and is there to support me no matter what and I’ve heard those three words once before but no matter what, it still sucked! I was scared out of my mind thinking about the possibility of having to relive this all over but this time with a new kind of cancer, one that I didn’t see coming in a million years. To top that off, they also decided that they were concerned that there could have possibly been something going on with a lymph node. Now that really freaked me out! Not just possibly breast cancer but maybe it was something all together different. So there I sat, in the waiting room waiting for my mammogram to happen and then to have an ultrasound followed possibly by a biopsy. I had the markers on my breast ready to go and my head was in another place all together. At the end of the day, the mammogram and the ultrasound both came back fine and I’ll follow up in a year. It appears that I have developed a subtle gynoplastia because of my prostate cancer which seems to cause some pain, the lump is more than likely fibrous tissue that hopefully will resolve itself and the lymph node in concern seems to be okay. That translates to no biopsy for me today. What that translates to on a larger scale is that I dodged two possible bullets today, my heart is able to slow down and I once again learned that valuable lesson of being one’s own best advocate! Today I wasn’t diagnosed with a new primary or even a secondary, but I was diagnosed with being the best self-advocate that I can be. Something wasn’t right, I reached out to someone whom I trust with a ton of knowledge about this particular cancer and she helped me find the right people to assess my situation. I did not just accept the ‘inconclusive’ diagnosis. I wanted ‘conclusive’. One way or the other, I was prepared to deal with it.
I was scared, I hated cancer more today than ever, but I was surrounded by friends and family. If you follow my facebook page or my twitter page, you know that I am constantly putting up goofy photos, shots of food that I prepare, silly facts etc. all in an attempt to add levity in times when we could all use a little of it and to show that life is just a collection of moments. Oft times we are dealing with things that literally scare the crap out of us and today was one of those days for me. I reached out on facebook and twitter, posted silly photos whilst I was in the hospital having my tests done and you reached back. I would be lying if I said it didn’t touch me. It meant more to me than words can ever capture. I literally teared up today when I read the comments from everyone showing that they cared and were concerned. So often we feel alone in this battle and ever since I was first diagnosed, the online community has been amazing for me. From my first moment of stumbling upon “Planet Cancer” and meeting people like Mike Tufo, Eric Galvez, Alli Ward and others, I have stopped feeling so alone. Today was another shining example of that support. Thank you all so much. Cancer sucks, ‘Survivors’ rule and we are all in this together. Cancer tried to kill me and with all of you, I now kill it each and every day with your ‘voices’ and support!
Sincerely,
Lynn Lane
Executive Director/Founder
“Voices of Survivors Foundation”