Tuesday, July 28, 2009


I'm feelin good. I feel good that I shared the weird feelings that I am having, and to have so many of you Survivors write to me and share that you too feel that.

I have tried to change my schedule to allow myself to have more fun. I was here working for a few days, and am heading out again tonight for a huge gathering at a friends house near Ashland. I am super excited to be around tons of love and friends and to swim in the creek, since its squelching hot here.

Friday, July 24, 2009

So I am not crazy...

I feel so good that I just read that two of you understand fully what I have been feeling. I thought that last night, maybe I came closer to understanding it. But honestly, I am starting to think that my therapist is right and I am suffering from PTSD, post traumatic stress
But maybe its just that I was a healthy 33 yr old, living life and had a pretty darn carefree, easy breezy life. And then the next moment, the phone call, the shattering, the world crumbling, making decisions, facing decisions i never thought i'd have to face, being sick, losing everything in my life, e*v*e*r*y*t*h*i*n*g, being sick some more, just trying to get through, not being understood, not being loved through my deepest darkest sickness, you get the idea.
So, maybe I am just seriously shell shocked, and scared to feel and scared to love and scared to feel some more, and scared to feel myself, and scared to trust myself, scared to trust my body, scared to trust my immune system, scared to put faith and trust in my future, scared to get close to anything or anybody again, as it may all be ripped from me again. She says, and types with tears streaming down my face.
And I am really, really tired right now, I just ran a year of IronMan's and am exhausted. And I don't have the energy to do this opening right now. So, I walk through life like a zombie. Or maybe its not this at all.
I feel happiness, and joy, and victory, and vanity, and love, and fear, and I FEEL, its just not sinking in. Like I am not getting invested in life.
WEll, thanks for saying Krisa and Tink that you get it, or are experiencing this.

Too bad there isn't a place that us young woman, after this hell we go through, can't go to and sit in a teepee together, or sit and massage and braid each others tears and look at each other and say, WE MADE IT! WE ARE DONE. Now, how do we go on. How to we rebuild from here? Where is this place? I wonder how many of us, loose our mates through this, and are left to rebuild a life from the beginning?

Well, Heather, You made it. Krisa, You made it. Tink, You made it. How is it that you are moving through this?


The other thing I find myself grappling with is for the past year, to get through this I had to live in the present moment, constantly. That is how I made it through. But now that I am done, in the beginning is was hard to think 2 days out, then 7 days out, now I am trying to imagine a few weeks out. Its hard to plan stuff, although my planner in me would like to think that she is ready to go gangbusters. But in reality, I like that I learned how to live in the present moment and would like to continue living my life. But how do I do that when there are goals and things that I want to do? Like having kids?

Thursday, July 23, 2009

Get out of jail pass

Can't sleep. I feel weird, had a chemo taste in my mouth, still have it, so I woke up. Now, I am remembering all my nights in my old kitchen (was the prettiest one we re-did), unable to sleep, high on drugs, eating egg and toast. Ick!

One thing that I keep forgetting to write in here is something that I have just been noticing for over a month. I am not judging it, but sure am questioning it because I don't understand it. And I will say, please don't any of you suggest in comments what you think it may be. As I feel vulnerable with it, and don't understand it, so I am probably suggestable..

It is that I feel separate from everything. I feel it on an energetic level and on an emotional level. I notice it when I am and should be having a deep connection with my sis, or with a friend, or with my Dad, with an animal, with a garden, or with anyone. Like the other day, when I was massaging a newly re-diagnosed cancer lady and we had a deep connection, a deep understanding with one another. It was felt. But at the same time, I feel a distance. Kind of like I'm floating out of my body and looking down. But I am grounded. I'm here. Maybe a little busy, but here.
Or, when I am with my sis. I am really really excited that her little tiger is coming. My little tiger (haha, wendy~and Wendy I haven't spoken to you about this only because I'm so weirded out by it, and i've been trying to figure it out)
But Im really excited, and all that comes with it. With the exception of, that again I feel disconnected. Shell shocked. TOtally out of the shell. Again, a feeling of not being in the experience, but just being a visitor, on a get out of jail pass. This is quite disturbing to me. As I am such an emotional person, so in tune with me and my feelings. I get the depth of my connections with people, and I feel it, but there is something that is blocking the connection. Like I am floating out of my body, like a dead person, looking down at the situation and seeing the beauty, but not having the connection as an alive person. Okay, I said it. The part I was scared of.
I feel like I am experiencing life as a dead person, instead of an alive person.
Its weird. I need to write this into my calender next to my cancer therapist so I remember to talk to her about this. Its disturbing and maybe just a normal part of coming alive again. Not sure. But its weird.

Saturday, July 18, 2009

My List of Happinesses

The little things that I am enjoying are:

1. Putting yummy stuff that smells delicious and sexy in my hair
2. Driving down the road and feeling the wind blow through my hair
3. Getting out of the shower and running my fingers through my wet hair
4. HAIR, HAIR, Hair
5. Enjoying that my hair didn't grow back in my under arms! Yes!
6. I just got my eyebrows waxed for the first time in a year
7. painting my finger nails, they are almost all grown back
8. Feeling healthy and strong
9. Amped on my innate strength and hummingbird self coming to life
10. tasting water again
11. tasting all foods, including pepper again!
12. putting smell good senses on my body
13. caring about how my hair looks : )
14. feeling vanity in my eyes when I look at myself in the mirror
15. seeing my cheeckbones
16. seeing my stomach muscles, barely, but I see them
17. fitting into almost all my old clothes
18. shaving my legs

The list goes on and on.

Some weird things that I have noticed is that this past week only, and just twice I get this chemo taste in my mouth. Its disgusting and makes me shiver. I also saw a husband of a wife who was getting chemo at the same time as me, and I almost got sick. I shook all over, ick!

I'm off to the island to lay in the sun and visit with friends, its the Strawberry Festival. Should be good times.

Friday, July 17, 2009

Hamster & The Wheel

Learning to live life again is intense. I was "off" for so long, learning so much about myself and just fighting to live, fighting my ego in the process of surrendering actually. I think that is the biggest one I learned this past year, in every aspect, was surrender. Like a cat who is a good kittie who has no intention to suddenly scratch you, but a kittie laying in the sun, on its back with all limbs thrown every which way. That is surrender. The picture I had for myself was the open palm, with curled fingers. And I would say to myself, nope, curled won't do. You must open further, just when I didn't think I could anymore, you find it.
Boring and exciting stuff....I've been working. I've been working too much. I am finally acknowledging this. Why is it that now that I am done, all I want to do is work? Its either extreme really, work or go on a vacation...I got to find the equilibrium with those two tasks.

Since I haven't been writing in this its hard to go deep about some of the great things that have happened. I need to start writing in here regularly. Yesterday I tromped my stuff over to my new house that I am living in. No more house sitting here and there. I unpacked, and am excited to be here. To start my new life. To get into my new routines, and that will allow me to write again.

This past weekend was a lot of fun. The most fun I've had since I was diagnosed. I went to the OCF, and was united with literally 100's of friends. I have always been the kind of person that has tons of groups of friends, so I end up knowing lots of people, and the faire is a lot of fun in that way. The whole idea that we are all connected in some way, is always evident there. As I spend my days running around hugging and catching up with everyone. I loved every minute of it. I got to a place of relaxation there that I haven't felt in so so long. I was able to sleep, which was unbelievable as live music played into the wee morning hours regularly. But I went to bed, (I resisted the temptation to stay up with everyone and chose to take care of myself) and found myself waking up and doing a little dance in my tent under my covers and then going back to sleep when I was touched the music. I finally slept a real nights sleep of 7 hours, phew! And its stuck, I am sleeping normally again.

When I got back I saw a bunch of doctors. I saw my new cardiologist who IS EXACTLY WHO I SHOULD HAVE SEEN a long time ago! I got to talk to my Onc about his referrals of lame cardio's. The lame part is that these other doc's have been scaring me and just guessing. She looked at me and said, "this is not common, but its also not uncommon. You will be fine. You do not have cancer in your chest, this is simply your body having an inflammatory response to the chemo/radiation."

Phew...I was able to breath again. She said I should be better in the next 3-6 months, and that I do not need to be on all these meds. In fact she has already started my taper off the IB profuren. My heart is still hurting a tad, but its good. Next week I go in for a stress eccho. Which is where I'll run on a treadmill and they'll do an echo before and after.

Overall, I have been feeling totally prednisoned out. Very very irritable, very irrational at moments, you got the picture. Luckily I'm getting pretty good at recognizing when I am acting like a maniac, and try to calm myself down. Now this is only possible because now I'm only on a measly 2.5 mg. I am sure this new found ability to calm myself down would go out the window if I was on 20 mg for longer than a few days. :)

I am enjoying connecting with all my friends in the city and vashon again. This is going to be a great summer, if I can slow down. OH! Which brings me back to what the new cardio said. She told me I needed to stop working so hard. She said that the stress of over-working causes my adrenals to be depleted which causes inflammation in the body. So I will try to slow down. Right now I WANT to work hard, not sure why. Maybe its just that I have been storing up for this day. I layed around for so long, I just want to LIVE.

I need to book myself a yoga retreat at Hollyhock or something. I am also going to take advantage of my mornings again. I think if I start later in the day that is better. I can chill, drink tea, go for a run, or do yoga and then work like a little hamster on its wheel. I love the wheel. I do. I just need to have the wheel jump its track sometimes and GO DO something else...regardless its doing something. We always are doing something. Why is work such a bad thing in our society? Why if I work do my adrenals get taxed? That's a silly question. I know how good it feels to do nothing and sink my toes into sand. Did I mention that my favorite secret beach in the city is just down the road from my new house? ( I do not, NOT have a huge smile across my face right now)

Wednesday, July 8, 2009

I'm feeling sad

You know I just want to start living my life. My old life. My old carefree fly by the seat of my pants life. I am pretending to do that now. My days are slammed with work, from morning till late at night. Forget that go slow business and take care of Heather reality I was painting to you, to me a month ago. Now, its full throttle into oblivion, and my heart's hurting again. No wonder. I'm in the beginning stages of divorcing a letter I said I would not mention here anymore, but it is before the letter E, and my heart hurts sortof because of that. But mainly before that, for years really, I'm talking on an emotional level now.

But on a physical, hurt like hell pain now, yes! I am sick of my heart or lungs, or guts, whatever it is. Today I started to panick that maybe its tiny amounts of cancer, since this is what my Old Cardio has been saying could be a cause ***what a dumb butt for saying that to me! I mean really!! What doc fills a new cancer survivor with that kind of crap!*** But really, I know that I don't have cancer in my chest, and its just inflammed, again, yes! AGAIN! I am so over it.
I have just ignored it this past week. I have just taken the steroids, and put the little bandage over the problem because I am leaving for my hippy vacation, The Oregon Country Faire, and I want to have fun, and just let go, and not think about hearts, and cancer, and aches, and steroids, and chemopause, and freakin' hot flashes.
But then yesterday, my heart started to hurt again, a little achy, and I was happy to know, not happy, I was relieved knowing that I was going to see my cardio today. Because I cancelled my appointment I had with him on Monday, a few hours before I was supposed to be there, because I JUST DIDN'T WANT TO GO! I wanted to skip school, and play hookie. I realize that I was only hurting myself, but the reality is is that he doesn't know what to do with me, and its a waste of my time.
So I skipped MOnday and rescheudled for today. He was late, he had to take on a surgery and it went late, and I didn't want to sit and wait, so I left. He called me and apologized and asked how I was. I explained and he then said, "well, lets put you on a low dose of steroids for 3 months." That didn't go over so well, and I told him so. I don't want to get fat again. I just lost 10 pounds this past month, and am so close to getting back into my old clothes, and I am almost able to see my cheekbones again, and NO! Not for 3 months. He was so easily swayed, and caved and said, "okay, a month."
Because he caved, I realized that indeed he is simply guessing, and I am sick of being his guessing project. So now, I don't feel bad at all for breaking up with him and seeing the other Cardio's tomorrow.
I will check in here afterwards. I am hopeful that they will be able to tell me what is going on.

I am sad that I am on all this crap.

I need to write about so much here. Like today, I massaged a woman that is 40, she just had her BC come back after 6 yrs. That was an experience. I need to talk about it. Will later. I am fragmented right now. Steroids are not helping with this. I feel like I am all over the map. I need to go to a yoga retreat and do nothing. I need a beach.

Saturday, July 4, 2009


I have been working and visiting with friends like a maniac. Yesterday was my first day in weeks where I did nothing, and spent most of the day alone. I was able to slow down and get tired, finally. About a week ago I hiked a nearby mountain, well..not all the way to the top, but close. My body felt great and I wasn't in pain. I am not sure if what happened yesterday is related to the hike or not, the doc's will all say no it didn't. But I think it did. But then again, I'm not a doc and maybe they are right.
But two days ago, I noticed when I was giving massages that my chest started hurting when I bent over to grab my massage oil. So, I started to put the bottle of oil on counter tops and not on the floor. This is a classic symptom of pericarditis. Bending forward and hurting. Even though I've gone through this a few times now, I still ignored that I was in pain so much that I had to change my pattern of doing things. I'm stubborn what can I say!
That night when I crawled into bed, my chest hurt to lay on my side. When I woke up, I new I was in trouble when simply walking down the stairs made my heart really hurt. I found myself holding onto my chest as I jostled my way down to the kitchen. I can't believe my good luck, but one of the top cardiologists in the city is one of my new clients and I was just so happening to give him a massage that morning (yesterday). He told me what he thought, but then again he hasn't seen my charts. I made some laughs about girly stuff like, "Crap! I don't want to go back on steroids. I am just starting to lose this weight. I don't want a moon face again!"
I left there and phoned my cardio, who was and is on-call all weekend. He put me back on steroids and it took until this morning for me to take in a deep breath with no pain, but I can now say, I am pain free again.
This sucks for many reasons. One, is that my inflammation punched through the anti-inflammatories that are non-steroidal. This is not good because for Two, inflammation around the lining of the heart can cause the lining to thicken which leads to a surgery that sounds straight out of a horror film to me. The surgeon would peel/scrap the lining away so that it is thinner. No thank you. Third, I might have to be on a low dose of steroids for a while. Four, I don't want a moon face anymore, and I was really liking the beginning of being able to see my damn cheeck bones again.

The good news, is I knew what to look for and jumped on it. And I am not going to have another full blown attack. The other news, is that I am switching to one of the top cardio's in the United States, and will be in good hands. Not that I wasn't before. But at least we can get to the bottom of this and I can relax knowing that I am in good hands. No more, "well this is where art and medicine come together." Hopefully my new cardio, can talk to other good cardio's in the US and figure it out.


Pissed off on a sunny day in Seattle