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Tuesday was a long day for me. I was at the state house again for many more meetings. An aide with the speaker of the house was first, my local senator's aide was next. Then we met with the chief of staff and another aide for the Health Care Finance Committee Chair, where we testified for our bill. After that was with the vice chair and 2 of her aides. The vice chair is also signed on to our bill and very interested in it getting passed. She was working hard for it.
We had another meeting with an influential representative, although she was not completely on board with our bill. We also stopped in to see another senator who is on our bill, who we had met with before. She is so unbelievably supportive and helpful. She made a call to a lobbyist I had met from a health insurance company and he wants to do a press event in support of our bill. (although the coalition I am working with isn't super excited about it and are all a bit cynical about his motives).
Lastly we stopped in to see the aide of the bills main sponsor, to give them an update on what we had been up to. It was a good day, but VERY busy.
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After that LONG day on Tuesday, I didn't get out of my pajamas on Wednesday. Seriously. I slept in the same pj's on Wednesday night as I did on Tuesday night. I didn't have the energy to even get off the sofa all that often.
Thursday I was supposed to go out for a lunch with a friend of mine, but I canceled. I was up in the middle of the night and just exhausted all day. At least I showered.
Friday I had an event in Boston at Dana Farber. It was an informal conversation with breast cancer survivor, Channel 5's Kelley Tuthill. It was a great event and I was glad I went. On my way home, I stopped quickly for lunch and got home around 2:15. I was in bed, out cold by 2:30, my clothes in a pile on a chair in the living room. I didn't get up until 6:30 that night! It took me DAYS to recover from Tuesday!!
It is just so frustrating to still not be over the fatigue. ONE day out takes me DAYS to recover from. Friday I wasn't even out all that long... 4-5 hours. Driving in and out of Boston, sitting at Dana Farber for this even which was under 90 minutes long, then having lunch. Easy day, right? And then I need a FOUR HOUR NAP?
I was too tired to do anything on Friday night, so we didn't go out. And I was still in bed pretty early.
Saturday I was at an event sponsored by the Friends of Mel Foundation. Life After cancer. It was a great event and I got much useful information from it. I took pages of notes and met some really great people.
Then I get home and I'm toast. I was home before 4pm and slept 4:30-6:30. Very happy last night was daylight savings, so we gained an hour. I took it! I think I got about 9 hours of sleep last night too. I've been up for a couple of hours now and I'm still in my pj's on the sofa. At least I had some breakfast and coffee already!
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One other thing about the past week. A couple of anniversaries. Tuesday. October 29th. It was the one year anniversary from my diagnosis. I'm glad I spent the day at the state house and I could share that info with the legislators and aides I was speaking with. It kept me busy and kept me doing something positive. That night was a different story.
I was sobbing that night. Hysterically crying again. It was all fresh again. Why am I hear? What did this year mean? What was I supposed to learn from this? Where do I go from here? When am I going to feel more like me? When will I recover from neuropathy and fatigue? Who am I now? Why did this happen?
All of that still hits me, sometimes its better than others and sometimes I'm okay. But always in the back of my mind, I know that with breast cancer, there is no "remission". There is no "cured". There is NED; No Evidence of Disease. That's where I am. NED. NED is my friend.
There are no scans to say I'm done. There is a wait and see if I have any other symptoms of anything, then test. So I have to just live my life as if I am okay, as if the cancer will never come back. But the reality of that isn't sure. There is always a risk. Even with a bilateral mastectomy, there is still SOME breast tissue remaining. I could always get a recurrence of the same breast cancer, a 2nd breast cancer, or a metastasis of the same breast cancer (the breast cancer I was diagnosed with last year showing up in another part of my body, ie lungs, bones, brain- which are common areas that breast cancer will show up). Or, even with my ovaries removed, I could still end up with ovarian cancer. The lining in that area is still there. Or I could get another type of cancer. The risk is always there and it is greater for me because I have already had cancer one.
This is something I will live with forever. This is something that will be in the back of my mind for the rest of my life. If I am sick, if I have a cold, if I get dizzy, I will always wonder if it is something to do with cancer. If my shoulders hurt, if I get a cut or bruise on my right arm, I will always be concerned that I will get lymphedema in my arm, that it will swell up like a balloon and never drain down.
I try to push those thoughts out of my head. I can't live with that day to day in the forefront of my mind. It is my life, my reality, but so is living each day and moving forward, and making plans for the future, and finding happiness and purpose in my life.
So I'm looking forward and finding joy in the little things. With Rocco snuggling up to me and throwing his front legs over me to watch TV with me. Or when (like right now), he uses a pillow when he's laying down.
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And then there is the bill. When we met with the Vice Chair on Tuesday, she said she was trying hard and really wanted the bill to be reported favorably out of committee during October, to be part of breast cancer awareness month but she didn't think it was going to happen (on the 29th at that point). She said that we had to respect the process.
On Friday while I was stopped for lunch, I got an email from Emily, the chief of staff for the committee chair. She said that on Thursday is was favorably reported! YAY! The bill moved out of committee and on to the next step! That was HUGE. I was SO happy and SO excited!
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What else?
OH, I wanted to do a think I saw on Facebook. 28 Days of Thanks. I'm a little behind, so I need to catch up, but here is the photo I'm going off of. Each day now through Thanksgiving, I'll try to post based on this picture. Anyone else giving thanks in November? Share it with me!
Day 1: A Blessing.
I have been so unbelievably blessed with so much. I have so much love and support in my life, from people and places I could have least expected. I am blessed with friends and family who have been by my side during my absolute darkest days. I could not have gotten through this past year without all of support, encouragement and love. I am forever grateful.
Day 2: A time when you were strong.
Over the past year, people have told me how strong I was but I didn't believe them. I still have a hard time with that. I did what I had to do to get through everything. I don't know if that was strength. There were many times I was balled up in tears at night. I was afraid.
A time that comes to mind when I think of when I was strong is about 2 1/2 years ago. I was training for the Boston Marathon. That's when I got injured. Ultimately it was my SI joint. Three weeks before the marathon, I was having trouble walking. I limped and was in pain with each step. The chiropractor that I saw helped realign my hips and stopped the pain when I walked or jogged.
Come that Marathon Monday, I was so afraid. On the bus to Hopkington, I remember saying out loud, "Who do I think I am? What am I doing?"
I was under trained, injured and about to start off on 26.2 miles to get to Boston. And I did it! I didn't run the whole thing. I didn't make my goal time. But I went from Hopkington to Boston in under 6 hours and raised over $7100 for Mass Eye and Ear.
Doing the marathon, I showed strength and determination to overcome any obstacle put in my way to achieve the goal I had set. Crossing that finish line!
Day 3: A person that lifts you up.
This one is difficult because I have TOO many choices! Back to Day 1, I have so many wonderful people I am blessed to have in my life. My friends lift me up. Family lifts me up (mine and Jim's). Rocco lifts me up (okay so he's not a person but close to it!).
But I have to say more than anyone, Jim lifts me up. When I hit rock bottom, when I am on the floor, crying, afraid, Jim literally and figuratively lifts me up. He helps me get up off the floor, holds me in his arms until I stop crying and calms my fears.
He makes me laugh. He keeps me somewhat sane and keeps me more grounded. He believes in me in a way I don't believe in myself. He lets me see that anything really is possible. We haven't had the easiest of roads and some days are better than others, but no matter what, he is my best friend and I love him. He lets me be the truest me I can be. Nothing held back, nothing reserved. Just me. He lets me see what is possible. He lifts me up like no one else.
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