Saturday, May 23, 2015

I think I have finally hit the acceptance phase of this cancer journey. It is an odd feeling. I am not comfortable with it yet. In fact, it makes me a little suspicious and nauseated. But there is a time when I have to deal with acceptance, and I think ( I know), I hit that spot this week, out in Boston while I waited in the doctor's office. I had myself getting all wound up and realized, that was my life then, before. What am I going to do with now? This is not a phase of getting back to normal, like after having the flu.There was a part of me that was hoping to be more flu like than cancer like. This does not mean I am giving up fighting. This does not mean I am not doing everything I can to become better, stronger, more fluid, and figure out a future for myself.  I am creating the new normal as I go, and improving on it as much as I can day by day.  This is not easy, and it is okay to take a day off here and there.  This is acceptance. Not that I think cancer is okay by any stretch of the imagination, except maybe for certain members of society on death row and those playing with Isis. For more on the stages of grief, see this article, http://www.webmd.com/depression/guide/depression-grief


So, what does one do when acceptance hits? The anger melts. It is not your main motivation.  You stop. You look around. You assess what you have, where you are, where you have been, and where you want to go to. What do you need to get there? I have no idea where I want to go, besides up. Which from this position, could lead to a lot of options.

What has helped me get to this stage? I would honestly have to say meditation and prayer. They have led me to where I am today.I have peace in my mind and my heart.  I am still angry I have cancer. I still think cancer is horrible. But it is not my main drive anymore.  I have fought, and will continue to do so. But now, I have to get on with the business of living. What is the sense of doing one without doing the other?

A few weeks ago, I spoke about anthems. What songs I listen to during radiation.  I asked what would be on your playlist. Been pretty quiet out there. Another song on my playlist besides Superwoman, and Girl on Fire, is Brave. Brave is by Sara Barellis. Everyday, many times a day, I listen to this song, along with the others.   I sing them in the shower, sometimes loudly and with lots and lots of emotion. Yes, even when I have a headache, because I can't sing when I am on the radiation table. These particular lyrics from the song speak to my heart:

Everybody's been there,
Everybody's been stared down by the enemy
Fallen for the fear
And done some disappearing,
Bow down to the mighty
Don't run, just stop holding your tongue

Maybe there's a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave
With what you want to say
And let the words fall out
Honestly I wanna see you be brave

And since your history of silence
Won't do you any good,
Did you think it would?
Let your words be anything but empty
Why don't you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave
With what you want to say
And let the words fall out
Honestly I wanna see you be brave


for the whole song https://www.youtube.com/watch?v=QUQsqBqxoR4

The other day, my friend and I were chatting online when she said she was going for her very first tattoo ever.  I offered to go to photograph the moment for her. Then she told me what she was getting, the word Brave. I knew that instant I wanted it too. It is perfect for me at this time in my life. It IS my life. Jean picked me up and we went and she got her tattoo, and I took pictures. The whole time hoping and praying that the tattoo guy would finish in time to do mine too. Never in this shop since they have been established, can you just walk in. My hope was pretty big. Now, I stole Jean's design, something I would not normally do, but I did, and personalized it, so the word Brave is in peacock blue with the sun in orange and yellow.  We now have matching tattoos and both love them. As I described to Jean in a text this morning, "I really love it and am so glad I have it. I well up with tears everytime I look at it - determination tears - most times I feel like Piglet. A little animal in the big woods. This reminds me that I am bigger than I think, stronger than I know, smarter than whatever is puzzling me. I am worthy of good things coming my way." So, go ahead, say what you wanna say, and do those things you have been wanting to do, when is someday going to come? Set a date and make it happen. Live a life of  integrity, honor, truth and conviction of your beliefs.  Show the world how big YOUR Brave is.

Namaste,

Cindy

Today marks the countdown to 7 more treatments!

Demanding full eviction of this stupid cancer and it's nasty side effects. Yesterday and the day before, I was sick as a dog  and my nurse grounded me to the main floor. I am typically a good patient and listen to most of the rules. Both days, I listened and obeyed ALL the rules. There are days you simply have to do that. I have noticed that the sicker I get or the more tired I get the less cognitive I am. I know this happens to people who have not had brain surgery or cancer, but in my case I am really, really out of it.  I let them wheel me around the hospital when I went in on Tuesday  for my labs and radiation. First time I had been in a wheelchair since I left Fairlawn Rehab Hospital. You would think it might spark some anxiety of some kind, but no. That's how cruddy I felt.

Which brings me to my next point. What does someone who is on a ketosis diet eat when they aren't feeling well? My favorite thing to eat is the Chai Spice Mug Cake. The closest thing to a grain based texture. I supposed if you poured it into an microwavable oblong small loaf pan it could be sliced into slices and toasted now that I think about it.

Chai Spice Mug Cake
1 large egg
2 TBSP room temp butter
1 TBSP Stevia
7 drops liquid stevia
1/2 tsp baking powder
4 TBSP almond flour
1 TBSP heavy cream
1/4 tsp cinnamon
1/4 tsp ginger
1/4 tsp cloves
1/4 tsp cardamon
1/2 tsp vanilla

Mix it all together well, and microwave for 70 seconds in a mug, microwave safe oversized bowl, or and microwavable container you fancy!

Tastes amazing with freshly made whipped cream, and used as a dessert, or replacing oatmeal in the morning, you can still use whipped cream, after all it is someone's birthday somewhere, right?

The Universe is taking care of me ever so gently. The other day when my mother was visiting we went to WalMart to look for something orange (to complete the colors of the chakras) to put on the deck for the healing garden she made me during her visit. When I run into my good friend Kelly, who works there. We are chatting for a few minutes and I commented on her earrings and how pretty they were. They are the sparkly angels. She took them off right there and put them on me and said "You needed your angels, that is why I wore these today, I was supposed to run into you." Kelly, I wear them always now, I only take them off during radiation, because I have to, but they go on first when I am done.

The old me would not have been so attached to particular items of jewelry. It just wasn't a sentimental side about me that I possessed regarding jewelery. I mean I liked it and I would remember fondly when I wore something who gave it to me. Those types of things. But nothing that I would not take off, besides my wedding ring when I was married. The new me, however is very attached to certain items. The embroidery floss friendship anklet Christine made me last fall at her house as we sat in her room. I was firm in the hospital that they leave it alone. There was no reason for them to touch it. Before that we were mother daughter, after that day, we were friends too.

I have my bracelet from Israel, that my friend Grace brought over there. She took it to all 14 stations of the cross and had it prayed over specifically using my name. She put my name in the Wailing Wall. Every day she was there, she texted me and told me where "we" were going today. So, I was sort of able to go to Israel, even if only for moments, while I was in the hospital. It was a good vacation for me, I could go to the text at any time during the day and imagine Grace and I with hooked elbows, hats and sunglasses exploring the Holy Land together. When she got home, she came to see me the first weekend I was home, and brought the bracelet to me, showed me many pictures of where "we" went and put the bracelet on.  It does not come off.

The new me also wears a beautiful necklace, even during treatment. The technician figured a way for me to keep it on. This comes from my dear friend, Suzy. We have been friends for a long time. Although we do not live close, our hearts are knit together with love, laughter and experiences. We had our children on alternating years, so my youngest two are stepping stones to her two children. She was in my wedding. We learned a lot about cooking together with our trials and errors. Suzy sent me the most beautiful purple (light), swarvarski (sp?) crystal and silver necklace with a charm of a dove and the word strength. I cried when I opened it. Heck, I almost cry at it everytime I look at it.

My other bracelets I will not take off right now are three Alex and Ani bracelets. One of them is a crown! Not even a tiara, a full blown crown. This came from my friend Deb. Deb and I met through our mutual friend, Maura. Deb and I are swearing sisters when we all go out together. They put us two close together at the table, cause we call a spade a spade, and giggle all the time while we are doing it. That's right, Mother Fucker, I got the crown, I am QUEEN of this domicile and I am ordering you OUT! You heard me, OUT!

The other is a phoenix that my mom had sent me last summer to encourage me to rise out of the ashes and recreate myself. Now is the most poignant time to hold onto that image. The third is a heart, also from my mom, kind of like her being there to hold my hand and keep me calm while I am on that radiation table. I fucking hate that mask, but only 7 more days.

My last bracelet comes from Christine as well. She gave it to me this past Christmas. It is one of those highest and lowest point bracelets. It has water from Mt. Everest and sand from the Dead Sea. It is supposed to provide you with a sense of balance and harmony. I look at it when I am feeling gross and remember that this is a moment in time. It will pass. There are so many more good times before and yet to be had and stories to be told.

Look for miracles, they are all around you.


Sending much love, peace and light
Cindy

A few more introductions

I have been blessed to have surrounded by awesome people on my care team since this whole thing started in earnest on February 27th. Okay, maybe while sitting on a gurney in the Emergency Department with a security guard and a man walking around with an open wound on his hand, wondering why the guy didn't fight fair, and "Papi, I have to pee". After the diagnosis was delivered, this is the scenario that ensued. If  I had been focused solely on that particular experience, I do not think I would be positively facing this disease with the forthright determination, diet, exercise, prayer, meditation, yoga, and hope.

From the nurses at UMASS, to the staff at Fairlawn Rehabilitation Hospital, to the staff, to the people that take care of me at home from Century Homecare. I have two nurses, one week day nurse, Janice, and one weekend nurse, Joe. I also have a physical therapist, Fran, an occupational therapist, Sue, and a speech therapist, Dave. I had an awesome experience this weekend, when Joe showed up on Saturday. I was feeling rather emotional when Joe showed up, and just plain old frustrated. My nurse Janice is a clone of me before I had brain cancer and advocated for clients when I worked at the group home. She gets things done. I love that about her. She is also compassionate, and like me, just the right amount of naughty. Sue is so supportive and encouraging. I even hear from her via text during the weekend if she runs into something she thinks I would find interesting. Fran doesn't take no for an answer and keeps me moving as per my request in the early days. Dave helps me to focus, find ways to concentrate (still working on that, thanks surgery, chemo and radiation I have the attention span of a 5 year old most times) These people are my team.

I asked Joe what he did during the week. That is when he told me he is going to school during the week. I asked what he was going to school for. That is when I found out that he was going to school to become a prison pastor. I was so impressed by his compassionate heart to go into the ministry, but prison ministry specifically. We talked and he asked if he could pray for me. I said yes. I was so glad he prayed. It was calming, it was confirming. I started the Course of Miracles Saturday night. A friend brought over the book shortly before I was diagnosed. Granted with the blurry vision right now, reading is not easy, but I am persevering. Maybe only being able to do it in small chunks at a time is good, this way I have to take it in more, be more aware, me more mindful?

Sunday, he showed up and he told me, "you know, I prayed for you all night." then he gave me a little homily if you will about being open to being in the presence of God, and when Jesus came and walked among the disciples, and sat down and ate with them and then disappeared. And it wasn't until afterward that they realized who it was walking with them. "You never know what, I want you to concentrate on your relationship with God. The miracle will happen. Concentrate on your spirit and your soul. Keep doing what you are doing with your diet and medicine. Most importantly, know you are never alone. He is here with you every step of the way, even when you lay in that radiation machine at the hospital, He is right there holding your hand." He prayed again, and assured me that we would pray for me every day. He prayed again and then he left. 

In Perseverance, Hope, Faith and Love,