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

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,

I am a glass half full kind of girl. Always looking for the silver lining. First things first, it is Wednesday and it is time to tell Mother Fucker to take a long hike off a short pier and never return. Remember team, we are wearing purple on Wednesdays.

Awesome things that have happened since I started chemo and radiation. One: my oldest son has these friends who used to be over at the house all the time when they were in high school. Turns out, their mom is one of the nurses who draws my labs. I get an honest to goodness, genuine, love hug every Tuesday. Thanks God, for taking care of that for me. I have not yet found the medical marijuana that I am seeking. However, I did find some stuff from a medical grower that really does help with the headache and nausea at a much faster rate than 45 minutes to an hour waiting to see if it works. Still seeking the tumor killing stuff, I have not given up. Super Lemon Haze and Terry Sheppey are the two tumor killing strains. Other strains that are very helpful are Grape Ape and Wi-Fi. If you know anyone that might be able to get these specific strains, please put them in touch. I get to see my son, and meet his fiance. She is a very nice young lady, they seem very happy together, and comfortable. I feel bad that I have to meet her at such a trying time. The sun has been shining. No more snow, I was beginning to wonder if I was in the movie Groundhog for awhile, every day seemed the same.

I am getting stronger, I can make it to both corners now when I go on a walk.I think the food diet helps, and filling the protein gap and strong nutrients. Hoping to push past that marker and make it around the block by next week. Small goal, to most. Huge to me. If you happen to see someone physically struggling or moving slow, offer them encouragement or assistance in my name please. They are doing the best they can, pay if forward.

My right leg has started to have spams again. It bothers me. I will tell the nurse this morning. I will contact the neuro-oncology doc this morning and tell them and see what they say.

Meanwhile, Die, Mother Fucker, Die!

Sick and tired of cancer already

This is a cross post from my caringbridge page, kind of says everything I need to get out for right now.

Tonight, I start chemo. 

The war is on. 

 Raise the war cry! 

Words are powerful. Very powerful. Thought and intent are also very powerful. Through the ages, people have used words when making a proclamation, whether it be in love, loyalty, forgiveness, friendship or war. 

Brain cancer needs an army to fight. I am leading the charge and I am asking each of you to please suit up and join me. On Wednesday, April 15th at 2 pm EST, please be wearing purple and raise your war cry against this brain tumor.Your war cry can be a prayer, http://biblehub.com/joel/3-9.htma .In terms of realism, this has some ground as traditional and even some current practitioners of martial arts hold the belief that accompanying statements and/or vocal noises alongside execution build up their chi, thereby increasing the power and efficacy of their moves and techniques. Put less spiritually, saying a phrase at the right time during an attack ensures proper breathing. A call used for this reason is known as a kiai. The naming of attacks also served a more practical purpose as many martial arts schools, Chinese ones in particular, used to be secret societies. The passing down of techniques was done orally and giving them esoteric names often facilitated this transmission. In addition, kiai has the potential to startle the opponent and give you an opening. (tvtropes.org) I personally will be using a more Bruce Willis, Die Hard approach, "Yipee Kai Yay, Die Mother Fucker Die". Not very lady like, whatever, this is war and I have had enough cancer in my life already.  My girls picked purple, I don't know why, but Wednesdays are purple days and it just works. I am going to do the first battle alone. I will reassess after the first battle. But I feel like I need to face this one on one for the first time. I am going to "put up my dukes and get down to it". There is only room for one of us in my head, and I am not leaving.  

To continue the war cry, the treatments are Monday through Friday at 11:15 EST for the next 6 weeks. The first one is the only one scheduled for 2. And we wear purple  on Wednesdays.