Saturday, June 30, 2012

Back To The Good Place

Is it possible that once one experiences that place of peace and clarity, one becomes so addicted to it, that then, when that place gets lost in the day to day issues, in the average state of mind, one finds it harder to pull him / herself back up, knowing that the amazing place of peace and clarity exists, because it is so good, way better than one would ever expect.
Too deep and meaningful?
Let me try to explain...

I have recently been through a very rough patch. I was physically very unwell. Probably most unwell I have ever been in my life. It was hard. And I found it extremely hard to deal with. Physically and mentally.
All sorts of thoughts have been going through my head... Being on heavy medications didn't help. Starting to experience some familiar but 'new' symptoms in my chin didn't help either. My thoughts were going quite wild. Negative. Not my usual self, I got spiraled into almost a depressive mood... Many questions were raised in my head. I felt uncertain, for a long time. And since I haven't yet had a scan of my head, I still do feel a bit uncertain. I want answers. And I want solutions.
Anyhow, I do feel better, physically and mentally. But I think I have lost the measurement of wellness somewhere on the way...

In my head, the only way is up! And I was quite high up feeling-wise for a while there. I was absolutely certain I am doing the right thing and that I will feel better and better each day. At least physically. I was expecting to be off steroids and on reduced other medication by the time I finish chemotherapy. I expected all my lumps (visible subcutaneous tumors that are pretty much all over my body) will be much smaller and I will overall feel much better, more energetic...

Well, it turned out very different.
Not only my tumors are still there, some of them got bigger. Steroids and other medication are all the same dose as they were before chemo. And the worst part is, there's new symptom - tingling and numbing sensation in my chin, combined with a pressure headache which indicate that I have an active tumor somewhere in my head...
Not good. Not good at all.

Now, because I've experienced the place of peace & contentment for quite a few months and I can vividly remember how amazing it feels, does that make my current feeling of uncertainty worse? Worse in a way that my standard to feel good is now much higher than it was 2 years ago, before I knew that place of complete acceptance, peace of mind and clarity existed? Is that possible?
I hope so. Because that would mean it's not that bad now after all. And to get out of this unpleasant feeling, yes, it is easier, because I know how and I have the tools.

The bad news is that no matter what happens, what results I get next week, this is my life now and I truly need to (lovingly) accept all, whatever comes my way...
The good news is that I am on the up. On the up in a way of feeling better, day by day, physically and mentally. It's a slow recovery, but it is a recovery. An extremely slow climbing and a very long way up, since my barometer has changed, but I am on the way up.

What I really don't need is any news that there are new or extra tumors in my brain. I believe I am done with it. I believe those tumors were treated a year ago and my mind and my mental state has changed enough to not grow any new ones...
I would love some good news. It would make my existence much easier. And it would make my 'way up' much faster.

I am still tired....

Please, oh please, mighty universe, deliver some good news this time! Surely I more than deserve them!

Wednesday, June 27, 2012

My Only Wish

As I'm lying down, resting, healing (have been for the past couple weeks since my last radio therapy), I can not help but feeling sorry for myself...
I am unwell. Truly, physically unwell. I have not been this unwell ever before in my life.
I am weak, extremely fragile, finding it very hard to walk, sit, stand for longer than 5 minutes at the time... I hardly leave the house these days. Dropping off my daughter to school is an enormous task. Even just visiting the Doctor sometimes too hard ... I can't go down the beach, since I can't walk for more than couple hundred meters. I don't go out to cafes at the moment, since I can't sit properly for more than 5 minutes and it requires way too much of an effort to dress up in the first place...
My favorite place is home, in my recliner. Just lying down, snuggled in a blankie, cups of tea, a nice romantic comedy, my iPhone and 3 comfort meals a day. My only desired company is my beautiful daughter and my loving man...
My emotions are all over the place too.
I mostly feel sad. And frustrated for being so useless. Angry, when I wish to do something and I realise I can't. I also feel scared of losing the vision ...
The vision of being well again.

The numbness in my leg, particularly in my foot, is much easier to handle than the pain, but yet it's hard to deal with when trying to move around. Or even just putting clothes on. It requires much too much effort.
The tingling sensation in my chin is scary. Scary because it's been there before, about a year ago. And soon after that, there came cancer diagnosis in my chin, scull and tumors in my brain. The tingling went away after radio treatment, but came back recently ... Does that mean cancer in my chin is back?

We were meant to be in Thailand at the moment. A three weeks long warm sunny tropical family holiday. Creating lovely memories. Well, we are not there, because I'm too unwell. The trip has been postponed till mid September. Something to look forward to. But I want to be well! I want to be healthy. I want to be pain free, numbness free, feeling well, energetic, and full of life. Possibly on a very low dose of medication, no steroids. Will I?

Another challenge is my hair. It's been over 6 weeks since my chemotherapy. My body hair is slowly coming back, but my hair is staying so very thin... It's just horrible. I cut it short the other day to get rid of that horrid 'zombie' hair look. But didn't do it any justice. Now all my bright red subcutaneous tumors (which are placed all over my scull) are obvious and are visibly popping out... Not a good look. Scary, really.

I look unwell. I feel unwell.
And I had enough! I am exhausted. Exhausted of needing to make important decisions on my future treatments, exhausted of feeling old, fragile, unhealthy, weak, unstable, uncertain.... And sick of seeing someone else in a reflection when I look in the mirror.

My only wish is to feel well.

Saturday, June 16, 2012

Just Another Hiccup? Perhaps.

I've lived through few weeks filled with horrid pain, yet again. And last week there was a little bit of history repeating...
Honestly, I wish it wasn't.
All I want is to be well. My greatest wish of all is to wake up one morning, open my eyes and while assessing my well being while still in bed, realizing my body has no aches, no pains, feeling well and strong and healthy. Get out of bed with no physical effort, light footed, and walk out of the bedroom well balanced, light and full of life.
Just, simply, to wake up feeling well.

I used to see myself being physically well all the time, even over the past year since living with cancer. But my vision is getting a bit blurry at the moment. And I must confess that my strong attitude has been weakened after the last, yet another unpleasant incident of waking up in agony and almost being unable to move. Yet again I had to call palliative care unit while still in bed, my GP and my radio oncologist. And yet again I was adviced to get an ambulance to take me to emergency ...
Honestly, it absolutely sucks.
All I want is to be well. Is that too much to ask?

It's been about 18 months on this journey now. And wow, what a journey!
I am mostly pleased with my life, I must say. I don't really have regrets. I appreciate all the lifestyle changes I have made. And all the changes in me that have taken place. I appreciate them all and I wouldn't change it for anything.
I definitely am a much better person, with way more peace and contentment, clarity, empathy, ...
But I am getting tired. So tired. Tired of being physically unwell. Tired of feeling the way I used to imagine to be feeling when I'm in my 80s and not at my age. Tired of bouncing moods caused by all the drugs I'm on... They just don't fit into my new found 'organic' lifestyle.
I know many things I'm going through emotionally at the moment are caused purely by drugs, but that doesn't really matter. What matters is the way I feel. And I don't feel right at the moment. I am in this moment, yes, and there are many things I greatly appreciate, but I can not ignore the ones I greatly dislike. There are just a few too many.

I often think of my beautiful daughter. She is only 5 years old. So young, but yet so in tune with what is going on. Every time she puts on her 5 year old behavior and if I am unwell or I let her know I'm in pain, she changes her act straight away. Instead, she runs to me, gives me a huge, honest hug, cuddles me and kisses me and says: mummy I love you. Or: oh mummy, I wish you were well already...
She is so precious, and she is the main reason and my main motivation to keep going and to pull out the whatever strength there is left somewhere inside of me, even when there's a moment when I am running on empty.

How about you? Who is your main motivation?

Saturday, June 9, 2012

Like A Yo-Yo

Coming off steroids isn't fun. I feel annoyed, shaky inside, weak on the outside. Still moon faced, horribly bloated and being very thin haired doesn't help.
The good part is, I am reducing the steroids. Hopefully I can go down to zero. That's the goal. At the moment I'm down to 3mg, from original 4mg.

The above was written about 4 weeks ago now...
Since than, all has changed. Again.
As I reduced the steroids down to 2.5mg, the pain returned with the vengeance. So I quickly increased the dose back up. And up. And up, to the old 4mg....
There goes my excitement of getting rid of the drug.
The worst part is, once the pain comes back (with the vengeance), it likes to take a very long time to settle. And by saying very long time, I mean weeks! It's happened previously and it's the third time now. I hope to have learned the lesson.

Back to the pain... Yet again! That horrid pain that keeps me up at night, makes me pop extra pills like lollies. The pain that makes me cry out loud for hours, makes me angry, frustrated, uncentered, irritated... It makes me not being able to concentrate and makes me tired, sleepy, cranky, upset, unsettled, sad, sometimes doubtful, unable to meditate .... The kind of pain that pretty much takes over my existence.
I now know it's temporarily, but that doesn't make it any easier. Easier to handle emotionally perhaps, but not physically. It is just plain hard.

In one of those moments of pain, this insight came by:
'We are never given what we are not able to handle'
Blah, blah, blah... I thought at the time, since I was in agony and I didn't feel like I was handling it at all.
But, here I am. Yes, I am strong, positive, determined and I love life, no matter. I love life so much, that no matter how bad my pain, I am willing to handle it. Handle it in any way I possibly can. I am doing whatever it takes to get well again.

Like a Yo-Yo, that's my life at the moment. And the moment seems to last forever ...
But that's it, I suppose. No matter how bad it is, there are million things around me every day, reminding me how precious and beautiful my life is.
The nature with its crisp ocean breeze, my family with the warmth of hugs and kisses, or lovely self-initiated 'I love you's by my daughter, the deliciousness of fresh, nutritious food, the fun times filled with laughter, surrounded by my dear friends, ....
All different things, great and small. In every moment of our life. Things considered good and the ones considered bad. All together, woven into this amazing journey called life.
And I decide to accept it all. Including pain.
I decide to stay right here, right now, being present in this very moment. Accepting every bit of it, as much as I possibly can. After all, Yo-Yos are meant to be fun, aren't they?