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

Hey There...

Been a very interesting week here in the Healing Home as I call it. I have created as peaceful of an environment as I can to encourage healing.

I have been nauseated and had a constant migrainish headache that would not go away. I had to pull out all the stuff in my arsenal, and still, was feeling punky. When I saw the doc on Wednesday, he tweaked my meds that he had tweaked the week before. Today, I woke up feeling better. Hooray! The other little thing MoFo threw at me this week is my hair falling out by the handfuls, and not just where they are radiating. It feels like someone is constantly pulling my hair all over my scalp. I cut my hair last night to shoulder length, 6 inches off, hoping the extra weight loss of hair might calm things down a bit.


On the bright side, it is sunny, there is no snow, it is Friday, I am 15/30 treatments down after my treatment this morning, I am alive, I am home and I am with my pets. Yesterday, Christine surprised me when I was waiting for the cab. She dropped by real quick with some potted Gerber Daisies for me. The perfect size to put on the little table next to me when Henry and I sit on the front porch. They add that perfect little spring pop of color right next to me. I am also enjoying watching the birds come to the bird feeder out in the back yard. The cats love it too, it is cat tv for them.

So, the ketosis diet continues. It is not difficult to maintain, or stay on at all. I admit, I did fall off the wagon last night. Someone, I don't know who, but I know for sure it wasn't me, left a half eaten container of Ben and Jerry's Phish Food in the freezer. Now, everybody knows when you are having a super sucky day, Ben and Jerry are some of the best friends a person can have. Needless to say to who ever left the container in there, it is gone, but not wasted, worry not! Ben and Jerry and I had an awesome reunion. Thank you benevolent anonymous person.

But back on the keto wagon I go today! Now, I have been making some recipes from what I find on the internet, and some, I make on my own, or some I look at on the internet, and think, (yes, I used the word think) I could make it taste better, so embellish away I begin. It is good to be able to slowly get my skills back as far as speed goes. And, I can have two pots on the stove, or one pot and something in the microwave or oven, at the same time! Not something I was able to do when I first came home. One pot meals were my thing.

I made some Pad Thai this week using spaghetti squash.It was not hard to make. If a woman  who had brain surgery and is undergoing radiation and chemo treatments can make it, anyone can make it, it is not difficult. It was so good, the first and second time, but it makes a lot so by the third time, I got kind of tired of it. I threw in a stripped, cooked chicken breast as well. And I did not add one of the heads bok choi, and doubled the sauce. I would triple the sauce to make it more like the original Pad Thai, and the peanuts on top and the cilantro really add to the flavor of the dish.  I think the recipe could easily feed a family of 4. So, remember all my hints when you go to the link to make this recipe. http://paleogrubs.com/spaghetti-squash-noodle-recipe

For you vegetarians, add the extra head of bok choi, but still triple the sauce.

Well, off I go to fry MoFo! Damn the torpedos! Tawanda! Burn, baby, burn!

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

Day three full assault

So, I tried creating a playlist, power songs to inspire me while I undergo radiation. I went to my old playlist and for some reason, I can't open it. I don't know how. Then a friend came over and said, "well it is a new battle, maybe the universe is telling you it is time for a new playlist?" Wise, grasshopper. And then I remembered, "hey, I can use Amazon Prime" and download free music there and make a playlist because the hospital has wi-fi.(Big deal to remember something I just learned, look at me go.) i pick out my playlist, starting with Alicia Keys, Super Woman, followed by Girl on Fire - a little radiation humor. The techs looked at me like I was morbid when that came blasting out of my ihome speaker.  So, right up until I walk into the radiology room, I have service, then kaput.Turns out as long as you have service you have your Prime Library available to you, but not on your device, you have to buy those songs for that to happen. Silly girl.  I have been forced these last two days to focus on the following two mantras during radiation "Die Mother Fucker, Die" and "Cells, heal yourselves". I have been so hyper focused on those two mantras that I come home exhausted and need a nap, which is throwing off my sleep schedule at night. Which leads me back to my original problem, creating a playlist that I can listen to while getting zapped that I have already paid for the music or it is on my computer. Once I figure this problem out, I am going to figure out how to get pictures from my phone to my blog so I can start showing you all how I am cooking my way out of this friggin situation and give you recipes to boot. 

I can't be off at night, cause I need to get up in the morning in time to do all my stuff and fit in all the home visits before I go to battle. Other than the battle weariness, I am doing okay. The ketosis diet is going well. I follow the menu exactly, food still tastes good, and I am eating regular portions.The chemo has helped cut down the steroid munchies, and the medical marijuana helps the appetite stay in balance, as well as assisting in nausea and headaches. I am looking for a particular strain that has been shown to obliterate the type of tumor I have in combination with radiation and chemo This has not been done without the use of all three. I have seen peoples scans. Typically only, growth is stopped for awhile and then you need more treatment.  I have my medical marijuana card but there are no dispensaries in Mass yet. I cannot get it delivered legally from a dispensary out of state. If you think you might be able to be of assistance, please contact me directly, thank you.

Okay, gotta get ready to rumble. Do my exercises before I go, shower and all that good stuff. 

Another key player in this Kick Cancer's Butt, Henry

I got my little guy when he was 8 weeks old. I had lost two golden retrievers within a 4 year time span. I missed having a dog so much, but knew that I needed a guy that was going to be easy maintenance and easy going to boot. I loved the idea of having a puppy, so I decided get a dog that stays the size of a puppy, looks like a stuffed animal, is easy to train, hair not fur so one is allergic to him, playful, yet gentle.

This is Henry coming home from the kennel.

Henry is now in all senses of the word, a therapy dog. I used him as a therapy dog many times over the years with clients. Never did I realize, I was training him to work with me. The thought never crossed my mind that this little fellow and I, who are a team, would ever need one another as much as we do. He follows me around during the day. Reminds me to rest when I am doing too much. Get fresh air for a little bit even if we can't go for a walk we can be on the front porch or back deck.  He deliberately does things to make me laugh like throwing his toys around, greets each visitor with a tail wag. He has also been working on his inside voice. He has almost mastered the soft woof when someone is at the door. 

Just waking up from a nap mom, geez

Started my morning off with yoga, a great way to get going. Then I did some housework, well, limited, but still did some housework while the home health aide was here. Still on the ketosis diet and loving it. The idea is to starve the tumor of glucose in conjunction with chemo and radiation to give myself the best odds possible. Today was a bacon, cheddar mug muffin. When it came time to make lunch, I pulled out a knife that I love to use. It was dull. Okay, no problem, I remember how to sharpen a knife. I get out my little gizmo. I start running the blade through the area and these little red "wheels" are supposed to spin. I can't get the wheels to spin. It is a small wrist motion, that is connected to your forearm that connects to your bicep, then you do the hokey pokey and turn yourself around. Oh shit, this is going to be harder than I thought. So, I give out a shout "Oh no you don't Mother Fucker! I am going to sharpen this knife and then I am going to eat at YOU but not for you!"  Very determined and focused and longer that it normally takes, that knife is sharpened. Perseverance and determination got the job done. Using that right arm of mine that I am attempting to rehab as well. 

Once I was sitting down and successfully eating lunch, I got to thinking. Always a dangerous phrase for me, "I got to thinking..." I feel fortunate that I was able to locate this information about this type of diet working for brain tumor patients, that I am able to prepare the food, that I am able to stick with the diet, and that I didn't have to do any of the planning, it is already done and the recipes are tasty. 

Wednesday is the big day. The first radiation therapy will be at 2 pm. After that, they will be at 11:15, Monday through Friday for the next 6 weeks. Today, I am working on a power playlist to listen to while the radiologist zaps Mother Fucker. 

Okay, merrily my little dog and I go on our way...

Introductions first, at least that was the way things used to be...

Hi, I am Cindy.

I am just about 50 years old, divorced and live with my little dog, Henry, and my two cats, Otis and Willie. My daughter thought Willie was a boy when she proudly brought him home to me, and then moved out 8 weeks later, leaving me with the kitten, who turned out to be a girl kitty. That type of stuff happened pretty regularly for me all my life, so that didn't really through me for a loop.

What through me for a loop was February 27, 2015. The day I found out I had brain cancer. Very surreal. Brain Cancer. That's rare, or so I thought. Actually, there are 150 different types of brain cancer. Over 600,000 people live with a brain tumor in the United States. Yep, that word back there was live. Remember that word, I will ask you for it later. Neurology humor

Turns out my tumor is rare. Not incurable, but rare and feisty. I have Abnormal Olgioastrocytoma, grade 3. I had surgery to remove a large portion of the tumor with very little residual damage. I had already lost control of my right leg below the knee, but continue to exercise, walk and stretch it as much as possible. There is some damage to the right arm, might be more of a favoring or protecting, but I am reteaching myself to use it and have not slipped so far away that it is not an attainable goal to regain full use of the arm again.

I am attacking on all sides. Surgery, chemo, radiation, nutrition , prayer and complimentary therapies.

Pre Brain Cancer Ass Kickin Princess Warrior, I was a personal chef and a personal care attendant. I had started my own personal chef business and it was taking off. I loved cooking for people. I will use that same love, care, and concern that I used for each of my clients into my cooking myself back to health. I will be following the ketosis diet that has been found highly effective in stopping the growth of the type of tumor I have in my brain. For more information on that here is http://www.cbn.com/cbnnews/healthscience/2012/december/starving-cancer-ketogenic-diet-a-key-to-recovery/


My job now, is to get better. So what was that word I asked you to remember?

Live, that's the word. And that is exactly what I intend to do, live.