Wednesday, 19 December 2012

NED!!! - No Evidence of Disease!

Dr. J. called us to come in today, as the results were in the system so he could share them with us before the holidays. Needless to say, we were so nervous!!

The results... NED! 'No Evidence of Disease'. Though  in the case of PMP re-occurrence is fairly frequent it may not happen for many years. Every 6 months I will be having an MRI, and checking... but for now I feel so incredibly happy and free.

Next Monday is my 38th birthday, and I will celebrate it with an enormous cake.

Bless you and thank you all for your support, your kindness and prayers, your good energy. We couldn't have made it through this year without you!!

HAPPY HOLIDAYS!!!!!!

Tuesday, 18 December 2012

No news is... no news

Thank you for the  good wishes and good energy!
I have been in hermit mode today, to be honest, but I thought I would post up since I have been fielding this question.

MRI went ok. It was a really strange experience; I could understand why people feel claustrophobic. You're strapped in and put in this... tube? Then really loud, frightening noises are all around you in intermittent bursts. I think I was there about 45 minutes, but its hard to tell.  I was pretty happy that I'm a sci fi fan and could get my mind to turn the noises and place into something else entirely; my favorite was imagining I was in a torpedo tube or some such. Maybe I was a stowaway on the Enterprise? At any right trying to think of plausible scenarios helped me pass the time, and it certainly kept me from panicking.

It DID help to close my eyes though, so if any of you are heading into your first MRI that would probably be my one recommendation.

As for results - no, I don't have them yet. We asked afterwards how long they usually take and were told about a week, but usually longer during the holidays. I do know that Dr. J had put a note to please read right away, so I'm still hopeful we may be able to get them before my birthday on the 24th.  I want to celebrate it with a NED ( hopefully!) or at least knowing what may be in store for us the next few months.

So - no news.  I'm actively ignoring the phone because honestly it just stresses me out to talk about it when there are no news to share. Sometimes waiting is the hardest part.

Anyhow, I will post up once we DO have anything to report, good or bad. All part of the journey, right?

Thursday, 13 December 2012

Scanxiety

As a friend  in our support group dubbed it.

My scan ( MRI) is coming up on Monday the 17th. Not sure when I'll be getting the results, as its taking place so close to the holidays.

As one might imagine Chris and I aren't sleeping very well at the moment, anxious about what the scan might show. Is the cancer gone? We know the chance of recurrence is high, but we have also met people who haven't had it, several years out from their MOAS.

So here's hoping, oh here's hoping!

We are at ease with the knowledge that we did absolutely everything we could think of this year. Hopefully it pays off, but if it doesn't there are still alternative therapies to try.

Still... if you have a few moments to send a prayer or good energy my way on the 17th, much welcome and appreciated! <3

Tuesday, 11 December 2012

Kids Book - Bellybuttonless

The kids book that Aiden and I were making together is finally finished. :)
It was a good distraction for the past couple of months -my scan is in less than a week, so I'm nervous but passing the time finishing off a few projects.


 The whole reason for this book  was to tell our story and help other families with kids start a conversation. To date there was nothing harder than telling my son that I had cancer; nothing I dreaded more than answering his questions, or worrying about his fears. Talking about it helped us all though, and it was one less weight for our family to carry. Being able to  tackle it honestly ( without excessive detail) helped us make it through this journey.

The printed book I am self- publishing through Lulu, and will be available in 2013.  You can find it here:

http://www.lulu.com/shop/a-teicher/bellybuttonless/paperback/product-20564363.html

It isn't a catch all book, but it is a labour of love. I hope that it can help some of you that have contacted me since I started this blog!

Here is a list of wonderful organizations to donate to:

  • The BC Cancer Agency
  • The Tom Baker Center ( Calgary) - surgical oncology department
  • http://www.pmpcure.org/ ( PMP Research foundation)
  • http://www.pseudomyxomasurvivor.co.uk/ (In the UK)







Monday, 10 December 2012

The Joy of Joints

Hate admitting it, but I'm still in a lot of pain. I've been trying to handle it with extra strength Advil every few hours, but its not really helping  much and it feels like it leaves my mind in a daze. I hate the sensation. My GP suggested a topical cream for the joints, so I will be trying that this week. I've been reluctant to introduce anything else before seeing my oncologist once the scan results are in, but I need to be able to function in some fashion. I had hoped this would be gone by the time I saw him, but as it seems to be sticking around I will need to talk to him about stronger painkillers.

Needless to say I am not sleeping particularly well, and until the scan in a week- goodness, one week!- I will likely be less present both online and in person.  Full hermit mode seems to now be engaged, and I hope to come out of it once I have had the scan.


Saturday, 8 December 2012

Happy Hannukah! ( Six months since MOAS!)

Yesterday was six months since the day of my surgery.

Half a year! In less than ten days I will have my MRI, and whatever it shows we will take the next step forward. Somehow waiting is one of the hardest parts; I hate the not knowing one way or another.

Tonight Hannukah started, the festival of lights. It celebrates a miracle, and the ability to find light in every aspect of our lives. What better reminder than the miracles we experienced this year? After the fear, and pain, the worries... just being given the chance to spend this time of the year with my family is amazing.  Having found the doctors that I have, being given the opportunities I was... how can I not feel blessed?  How can I not see the brightness around me, when my friends and loved ones were points of light and support all through this year?

Tonight  I finished the children's book about PMP and appendix cancer that I have been creating with Aiden ( for Aiden). I am profoundly happy that this is something I have completed; that we did it together, and can share it together.

I have the PDF version ready, and will be publishing the physical book version too, so hopefully more info soon.

My MRI scan is on December 17th; if you have a moment, and can send some good energy my way that day, please do?