Tuesday, March 15, 2011

Life Beyond Breast Cancer

I am now a 18 month survivor and celebrated another birthday this past August, Woo Hoo! Being 1 year out post treatment, I feel great for the most part... I still have a lot of fatigue tho. Is there such thing as chemo brain? Absolutely!... Seriously, I feel like my brain is fried... I have become very forgetful and it does annoy me at times and can be frustrating ... best thing for me to do is to write everything down. On one of several occasions, I've had trouble with words, for instance, recently was trying to type a message and I couldn't figure out how to spell the word "sad", it just wouldn't come to me... then I went to my dictionary to look the word up but then I couldn't sound it out... I was flustered, It's a 3 letter word S-A-D, I knew how to spell it, I'm not stupid, it's just my brain wouldn't function like it use to. 
After 9 months without a "cycle" due to chemo treatments, my menopause was just temporarily with period returning but irregular, Doc thinking I'll hit menopause again within 2 years My husband saw it as a sign that I'm getting better. Sucks to know that I have to go through menopause twice now. I still often rub my port scar missing my port being there... weird, I know. My hair came in gray and got darker and wavier as it's getting longer, about 5-6in. long now but seems like it's taking forever to grow out. I had my mammogram along with a MRI in September, CLEAR SCANS, still in remission... What a relief, I am now starting to feel confident about my health again. At my last breast exam, there was I think 3 interns; 1 male and 2 females, a nurse, my research coordinator and my oncologist when she asked me if I mind undressing so she can do a breast exam? Actually, I did mind with that many people in the room all looking at me. My oncologist then asked me if I want some of them to leave the room and I said, "Yes, all the woman can leave" leaving just the one one male intern, she laughed and sent all the woman out of the room. I then had my oncologist and the male intern turn around while I unbuttoned my shirt because I didn't want them to see the old raggedly bra I had on. 
My oncologist told the male intern that he has to ask me for my permission to do a breast exam on me so he asked me, "Melissa, May I"... I didn't even let him finish and I said, "Yes, you may!" My oncologist laughed and said she was going to email and tell my husband afterwards, LOL!
This past fall, my research coordinator had me on a study for ginseng for energy to help with my fatigue. After the first 8 weeks, I found out that I was only taking a placebo. Then 4 weeks of the "real" ginseng, it didn't help me at all with my fatigue... bummer. 
Let me tell you a little about BRCA that I'm still learning about. BCRA is a gene mutation that is passed down in family and is linked to a great risk of breast cancer and ovarian cancer. From what I heard is that most BRCA Positive cancer is also Triple Negative cancer and has a 80% chance of recurrence. Me being Triple Negative, that would make me a good candidate of being a BRCA carrier but I chose not to get tested because I don't want to know. My surgeon told me that it's not whether I get tested or not, it's what I decide to do with that information if I was to test positive for BRCA. Being BRCA positive, the recommendation would be to have a bilaterial mastectomy and have ovaries and tubal removal because the risks are so high. I don't think I could go through all that when everything is healthy right now if I was to test positive... It's too much for me to handle right night, kinda like starting all over again without the treatments. Doc told me to concentrate on the 20% of non-recurrence and reduce my risks with staying fit, low-fat diet changes, exercise, keeping up with my scans and now add ultrasound on my ovaries annually to the my list. The whole thing is pretty scary, I figured I deal with it when and if the time comes. 
I have participated in some of The Victory Center's programs and activities: massages and facials were my favorite; reflexology was good on my feet; Healing Touch and Reiki, I couldn't get into.... I guess it's not for me. What I enjoy most about the Victory Center is the Breast Cancer Support Group where you can go and talk to other women who have walked in my shoe's that don't mind talking about breast cancer and sharing each other's experiences. 
I walked the Komen Race for the Cure with some lady friends from high school... Wow, there was a lot of pink, a lot of survivors participating in the walk... you see the reality of how many women have been affected by breast cancer in NorthWest, Ohio. I participated in the University of Toledo's Relay for Life in December with my son. I've gone to various Susan G. Komen and The Victory Center events including University of Toledo girls basketball's "Rocket for the Cure", Toledo Mud Hens hockey "Pink in the Rink", various guest speaker events and The Victory Center's Luncheon and Fashion show featuring cancer survivors as models. 
After treatments, with no job to return to, I spent a good part of my summer visiting a good friend at the lake... trying to figure out my new "normal" and adjust to living again. Having Cancer has made me a much stronger woman, I know now that I can withstand anything. I have to admit that life after cancer treatments is a lot harder than when i was going through it. People seem to think that when you're done with treatments and is cancer free that it's done and over, put it behind you, things can go back to normal... Only if it was that easy. I've been struggling some... the life I once had, there's no going back to... so many changes that I'm learning to cope with still. I've got tears in my eyes as I'm writing this, because people just don't "get it" and I don't like to complain. I miss my jobs I once had, I really loved the work I did and it's all gone, my work defined me. I'm tired all the time and am not spending real quality time with my son and husband and we all have noticed it. I feel so scattered brain at times to the point I don't like to take on anything challenging and has been difficult for me to take care of my house like I should. I've been stressing with my follow-up appointments with how I'm gonna pay for the visits since my health insurance changed drastically. Diet and lifestyle changes have gotten easier but I still have a long way to go to reduce my chance of recurrence... It took me a year to get this through my head but I have to do it, I really do and it takes a lot of self discipline to stay on track. Along with my hair loss, the change in my breast appearance, limited use of my arm for risk of lymphedema, lasting aches and pains and the fear of relapse... This has all taken a toll on me. My "Triple Pink " sisters "get it"... they're all going through the exact same thing and just want to feel and look normal again, it hasn't been easy. I have reached out to many TNBC survivors who had walked my same path, it's very self-rewarding knowing that you have made a difference in that person's outlook as I do have a positive attitude... Don't get me wrong, I do have a lot of good days too where I get out and do fun stuff... I like living for the moment, enjoy who and what's around me... LOL, I do post a lot of pictures of good times, don't I?