Wednesday, 28 November 2012

Its out!

My port -a- cath is out and gone, lalala, lalalaaaaaaaah!!!

It was nowhere as lengthy or involved as putting it in was. So happy not to have it in me anymore, even though it served its purpose beautifully.

One more thing down. :) Heard from a friend who had the same surgery a week after me that she got her results - NED ( no evidence of disease) and it made my day. I hope my own MRI next month says the same thing.

Today another friend's husband is undergoing MOAS with my surgeon, so keeping fingers crossed and sending some prayers their way. Life one step at a time, but feeling pretty good today!

Monday, 26 November 2012

Dr. Sugarbaker and the Sugarbaker procedure

I've mentioned MOAS ad nauseam, but  an article came out in the Washington Post that can better illustrate it, I think.

Not for the faint of heart, it describes the type of surgery I underwent and the surgeon who pioneered it:
http://www.washingtonpost.com/lifestyle/style/surgeon-performs-controversial-cancer-surgery-named-after-him/2012/11/25/c8ad7ab8-29da-11e2-bab2-eda299503684_story.html

As appendix cancer is such a stubborn foe there are people who have undergone  it 2 or even three times.

 I’m really hoping that ONE  does the trick for me. I guess we’ll know at the scan in December. G-d bless people like Dr. Sugarbaker who continue to push the frontier of medicine.

Scan date has been set for December 17th, which means I probably won't have the results until the new year. Ah well, at least I will get to enjoy the holidays and my birthday ?

Monday, 19 November 2012

Allowing Grief

The past week and a half I've been in pain - my bones are joints are aching like crazy, and I'm taking more painkillers lately than just after MOAS.  Thankfully its transitory; there's something called post-chemo arthritis, and I really hope that's not it.  The pain has been waking me up at night though, which means that I rarely get back to sleep in a timely fashion. I think many of us can attest that the early hours of the morning are so eerily quiet it allows the mind to wander to unhappy places.

I was talking to a friend and she commented on my positive attitude. In fact, over the course of the past few months that has been brought up by friends and I smile and thank them. I AM thankful; their care and concern helped us made it through the worst times, helps me make it through the nights when insomnia takes over.

In my case, I need to cling to it. I do. I remember remarking once : "What's the alternative?" because for me, if I go down that road I'm not sure I can climb back up. I need to stay positive, determined to win this. I need to look at the scars that pepper my body as well earned battle scars, have the mindset that the war is not yet over but I have every chance of winning it in the end.

But that's me. That's the way I function.  Throughout this journey I have met other people that don't process their cancer journey the same way. There are tears, and depression; there is grieving, and bucket lists. My positivity isn't a badge of honour, simply the way that I handle things. Likewise, there are times ( and I'm sure there will be some too) when I need the opportunity to cry it out, to grieve.

Cancer isn't fair. No part of your life, or your loved ones', remains the same. If G-d willing you survive it you will be forever altered; I have had survivor friends describe it as the 'new normal' because... well, things never go back to the way they were before diagnosis. 

We all grieve, whether we admit it or not. There were a couple of times, just before the surgery, when I actually broke down. I was ANGRY, so angry and so upset.  I have few regrets in my life, and I have tried to lived it as well as I can. Chris and I always believed in following our hearts and have had plenty of adventures together. Looking back there isn't anything that I need to make -right-... but looking forward? I realized that last year, on my birthday, I was sick. I came down with bronchitis and didn't bother celebrating it because I felt miserable; besides, there would be many others to celebrate, I told my husband and son.

I am 37.  In March I came to the realization that there may not be another birthday. I broke down thinking that I would have to explain to my son that parents are mortal. That although I had promised to always watch out after him I might not be able to do so physically. That I would leave my soulmate alone with the task of raising him, of guiding him through puberty, and girlfriends, and broken hearts.

 I documented every activity we did together, every moment spent with one another -- just in case.  I don't want Aiden to forget my face, or the sound of my voice. I don't want him to forget that we did art together, talked about plans and sea creatures, sung The Rainbow Connection every night before falling asleep.

Just before my surgery I went shopping with my mother and sister in Calgary. I wanted to buy her twins toys, and she kept trying to talk me out of it, bless her. Finally I broke down and started bawling, there in the toy aisle; I told her to just let me buy  them something, because I wasn't sure if I would be there for the holidays or their birthdays and I wanted them to have something from their aunt.  She got the point, and let me.

"Everything will be okay" is such a wonderful mantra, and I have heard it so often this past year.  I need to hear it because it reassures me; I need to say it because then maybe, just maybe, I will believe it too.  But there were many times when it was uttered as a shield, either by me or someone close to me.  Sometimes its just too hard to deal with the possibility that things may not be okay.

What do we mean by it? Do we mean to say ' I know the cancer will go away completely and never return'? I don't know that. I certainly want that to be the case, but life holds no guarantees.  What do I mean by it, when I say it?
I mean that it will make sense, in the end. It means that in the event that the cancer doesn't go away, or returns, I am willing to keep fighting it. It means that if eventually it gets the upper hands and takes me I know that Chris, Aiden, my family and friends... they will all be okay.  To me love is like energy that cannot be destroyed, only transformed; in whatever form I am around my loved ones I know that I have given a part of me to them, just as they have given part of themselves.  I know that I am at peace which whatever the future holds because I know that  past all this I have put enough of -me- in the universe for some of those footprints to survive.

I grieve, but I also hope. :) In December I will have my scan, and after we get the results we will see what steps come next. Regardless, I will be celebrating my 38th birthday with the most enormous cake that I can find.

Friday, 9 November 2012

The Waiting Game

I feel better since we stopped chemo.

Ever so slowly I'm regaining my strength. I am feeling like myself again, and day by day incorporating more activities. I am back to drawing, my eyesight is almost back to normal and I can actually feel my body healing from the onslaught of the chemotherapy. No more passing out, or suddenly going into shock! :)


I had a wonderful time celebrating  Halloween ( I was Snow White, heh) and my son's 8th birthday. We got to meet our new nephew, Connor, and show Aiden Tigh-Na-Mara, were we spent our honeymoon 12 years ago.  These were all things I wasn't sure I'd get to do, so they were that much sweeter.

Now I am focusing on health and nutrition;  my appetite has returned for the most part, so I am cooking again and incorporating more new foods every days.  Physical activity I am tackling slowly, as my energy is still rather low. While I have mostly healed from the surgery I still have the odd aches and still have to work up to my usual activities. I am enjoying these weeks as on November 28th I have to go in and have the port-a-cath taken out, which will probably make me achier for a while. Still, the thing hurts everyday so I will not miss it!

Early December I will have my MRI scan, which will be read both by my oncologist here and Dr. T. I wish they'd give me a date!  I'm told that I will likely not know until late November when it will be ( sometime in the first week of December or so); then I have to wait another 2 weeks to meet with my oncologist and discuss the results.

In the meantime I am also looking into alternative therapies, as recommended by a friend who is a chinese medicine practitioner.  I can't be on HRT either ( my oncologist discouraged it) so getting to know my body all over again is a bit of a challenge.

All that being said... I am happy.

I know that I have no certainties yet. Do any of us? I will wait for that scan with bated breath and hope that after everything we did this year it shows NED. And yes, I'm aware my particular cancer has a high probability of coming back sooner rather than later, but I have now met survivors 5, 7 years after their surgeries and chemo. And in 5 years, I keep telling myself, who knows what else will be discovered  in terms of treatment or perhaps even a cure?

In the meantime, life goes on. Today is a gorgeous autumn day, and I am going to spend it playing with my son.  I am drawing again, I am writing again.  The sequel to my novel is underway as is a Historical Compendium of the Yappari and Sidhe empires ( thanks to my sister's prodding); I am also working on a YA steampunk novel for my son and a kid's book about appendix cancer. The latter I am making together with my little boy, as I hope to make it something parents/ grandparents can use to make the explanations easier and a little less scary.

I have projects and hopes galore. So...onwards!