Tuesday, January 17, 2012

Mayo Clinic Symposium Living with Cancer

Do normal people go to cancer symposiums on their birthday? That answer would be.... Probably NOT. Me, I'm not your average normal person, it was exactly what I wanted to do and I'm so glad I did. Knowledge is empowering I want to soak in every bit of information I can about the VILLAIN in me, is it possible for he and I to live together without recurrence on his part? After listening to all the incredible doctors at Mayo Clinic, I walked away feeling like I'm in complete control of life and whether or not the cancer comes back in days, months or years I have no regrets.

I was fortunate to hear from all of my personal doctors at the symposium.  I'm really not a person who normally likes to sit and listen to lectures, however, this was close to my heart and I didn't want it to end--the information I got was invaluable for me.  There is something  to be said about sitting in a room full of cancer patients and their care-givers.  When we broke out into our disease specific sessions, Dr. Northfelt said he wanted it to be more of an informal session and allow patients and care-givers  to ask questions.  Dr. Pockaj is the surgeon who performed my mastectomy she spoke 1st, one of the most important things I took away from her speech was that 35% of patients find their own lumps by doing regular breast self exams-- I am a firm believer and endorse this frequently on my FB page.  I was told one time that a doctor told a patient she does not need to be doing her BSE because they are ineffective--- I'd say 35% is a significant percentage so I will continue to endorse.  The other thing I learned is that after a bi-lateral mastectomy (which is what I had) there is no need for mammograms.

Dr. Michelle Halyard was my radiation/oncologist she spoke next--I loved all she had to say and it confirmed to me that every fear, anxiety, memory loss, insomnia, pain, joint  muscle fatigue and loss of appetite is normal.  Imagine my surprise when I found out I was NORMAL-- well at least when it comes to being a cancer patient--I can't get anyone else to tell me I'm a normal person in "real life"

Next up was Dr. Northfelt, it's no surprise that I have not been happy about the fact that I do not really get to see him--I have been looking for another oncologist--Not all cancer patients feel the way I do--I am someone who NEEDS to see her oncologist at least once a year, and I have asked for this but been told that because Dr. Northfelt is also the lead oncologist for Mayo Clinic he is very busy and has administrative responsibilities too. He is a wonderful Dr. I remember the 1st time I met him I felt so comfortable, he made me feel good about my diagnosis and gave me hope for my future--I loved that he was my doctor--after talking to other cancer patients, not necessarily from Mayo Clinic, I have discovered that they all see their oncologist--I know patients who are just fine with seeing the PA (physicians assistant) they don't want to bother with the doctor, or that seeing the doctor creates anxiety or unwanted fear--I AM NOT THAT PATIENT--seeing him continues to give me hope, helps me to feel like he is completely on the same page with me and that he knows who I am, I'm not asking for much just once a year, as much as I am at Mayo that is fair--right?
OK so back to Dr. Northfelt-- before the break out session started he approached me and thanked me for the tie I gave him for Christmas--I was shocked that he even knew who I was, but gave me comfort knowing he did.  He lectured about health and fitness--but before he started he said something that brought tears to my eyes, he said that a patient he had not seen for awhile had just told him she had decided to see a different oncologist and that Dr. Northfelt was not providing her with the care she needed.  He seemed really sad about this information, it touched my heart and brought me to tears.  This is the reason I wanted him specifically for my oncologist, he has a heart.  What I took from his lecture is that I am doing everything he asked me to do, he talked about the book Anti Cancer, he again confirmed to me that cutting out sugars, fats and having regular exercise in a daily routine will help lower the risks of recurrence--walking at a natural pace 3 hours a week also reduce the risk of Breast Cancer relapse.  I'm in check with all he suggested, I know if my cancer returns I did all I could do--NO REGRETS.

Maryann Forrett is the PA for Dr. Northfelt she spoke next--her subject  was intimacy and sex during and after cancer treatments--kinda an embarrassing subject to talk about but she was eloquent and touched on everything that I had questions about--I did raise my hand and ask a few questions--I prefaced my question by saying "I know you all have had sex and you all want to ask what I am about to say but are too embarrassed so hear goes" and I asked my questions, I don't really feel comfortable sharing those on my blog, in that room though it was OK because if there is one thing I have learned all breast cancer patients share a bond, an understanding of the changes that occur in your life while going through such a difficult time. Intimacy for so many patients changes, for breast cancer patients especially, for the obvious reasons your body has now changed, I don't care how much you love and trust your spouse or significant other the fact is there are scars YOUR BODY IS DIFFERENT and exposing that vulnerable part of who you are, as a woman,  can truly be devastating.  When I had my mastectomy I did not want Eric in the room at the hospital I asked Dr. Kreymerman to have him leave the room while he examined me, I know it hurt him I could see it in his eyes, I knew he loved me, that was not the problem, I didn't want him to see  what I could barely look at--it took me weeks, maybe months before I would allow him to see me--that moment when I allowed him to see what I could barely stand to look at in the mirror was an intimate moment for both of us--intimacy is so much more than sex.
For the not so obvious reasons, an estrogen fed cancer changes everything, it is a part of what makes women sexually function correctly, and for me estrogen has to be blocked with medicine--the side effects for these medicines are a list I don't even want to bore you with--it's awful to not have control over how our bodies function, Heavenly Father created us perfectly and when something is missing or not working it all goes to heck--hot flashes, anxiety, depression and a low libido are part of that.

Pauline Lucas who was my physical therapist had a quote that I love  "Believe in Life, In Your Life" she spoke about meditation, health and fitness.  I love her, she was such an inspiration to me and I loved having my sessions with her--I miss her.

Overall, I learned to live for today--celebrate TIME, and hold on to all the good memories, make connections with people be meaningful, remember good and fun memories and write them down to reflect back on days when you need to be uplifted. Find something to laugh about everyday, it's the best medicine. My quality of life depends on ME and me only, it's all about quality not quantity.
These are my four F's
if anyone is having a difficult time with any of these,  its time to reevaluate  and rediscover who and what are important to you.