Saturday, 24 March 2012

Follow up - Mucinous Adenocarcinoma and the Jelly Belly

Low Blood Pressure and the CT Scan that was not to be ( AGAIN)

By the day of my pre-planned CT scan, March 13th, I was already home and recovering slowly from my surgery. Post op had gone without much issue, and I had been discharged from the hospital  after two days. On the morning  of the scan I got up to go to the bathroom at about 3 am.... and fainted from low blood pressure, ending up on the floor. I must have hit the  door frame on the way down, as I broke my nose.

Since my surgery had been the past week at RCH the paramedics took me there; not much could be done about the broken nose and after testing my heart, sugar and blood pressure I was sent home again. I was, however, in a lot of pain... so after some pain medication and ice managed to finally get some sleep. 

We had to cancel the CT-scan.



Mucinous Adenocarcinoma and the Jelly Belly

Ten days after surgery we had our follow up meeting at Dr. U.'s office.
He wanted to check in on all the post-op, but mostly to share the pathology with us. Dr. U was amazing; warm, compassionate and incredibly kind he fit us in  after the office was technically closing so that we could meet. He said he didn't want me to fall through the cracks in the system.

Dr. U checked on my stitches and progress from the surgery; thankfully I was healing well and relatively quickly. I had been able to rest a lot, since my son was now spending Spring Break with his grandparents on Vancouver Island. He showed us video from the operation, photos of my appendix and cyst and the jello substance. He explained  that it WAS cancer -- something called mucinous adenocarcinoma. It hadn't originated from my left ovary, as first thought, but rather from my appendix.  It had already done metastasis, and the cancer cells had spread with this... slime  all over my abdomen. They had coated my right ovary, parts of my colon, other places as well. He let us know that we would be needing treatment for cancer -- likely surgery and then chemotherapy, but questions about that were better left to the oncologist. He was very helpful and answered all the questions we had prepared in advance.

Dr. U had already sent our referral to Dr. J, the oncologist who would be looking after my case. We have that appointment coming up on April 12th. Dr J had already contacted a surgical oncologist, Dr. Mc - and we had an appointment all set up with him for the following Tuesday ( March 20th).

We left his office exhausted and more than a little terrified. A million questions came to mind, and searching from MA online only created more. We decided to make new questions for our  oncologist and ask them when we saw him Tuesday. 

Meeting with the Surgical Oncologist - Pseudomyxoma Peritonei

Arriving at Dr. Mc's office was nerve wracking. Everyone we saw in the waiting room seemed so much older than me ( in their 60s, I would guess);  it struck me how odd it felt to be given those news at my age. He saw us fairly quickly, and was warm and compassionate.  He asked what we'd been told, and we summarized what we knew.

Dr. Mc filled in the blanks - what I had was a rare type of cancer called Pseudomyxoma Peritonei. Basically one in a million people get it; there is nothing genetic or lifestyle related they have been able to  link it to... basically he called it a biological car accident.

Because of the way it spread and how much of my organs it looked already had involved my PMP was considered to be a stage 4 cancer ( as it had already done metastasis).  I was numb at this point, and REALLY glad that Chris was with me and that we had the foresight to write questions down in advance. The gist of it was that I would need to treat this aggressively, and because I'm pretty healthy and young ( 37, non smoker, none drinker -- overweight but otherwise with no other health issues)  I was a perfect candidate for  Sugarbaker.

He let me know that  because its so rare there are no specialists here in BC, so they would have to send me out of province, preferably to Calgary Alberta. There I will undergo  this extensive surgery ( of 12+ hours) - chances are they may have to pull out more organs, but they may not know until I'm literally on the table. I will also need chemotherapy, likely both at the time of surgery and some to follow after.  I'm told recovery from the surgery will at least be a few weeks.  With our assent he sent off the referral to the Tom Baker center in Calgary, and another to re-schedule a CT scan ( since  I had to miss the one on the 13th when I fainted and broke my nose) to better see what may be involved.

Now its just the wait and see part.


Telling Family and Friends

Telling family and friends was the hardest part. How do you even start? Just say the word cancer and everything just... falls apart. I held it together when talking to my family, but talking and emailing a few friends I just about lost it.

Both our families were incredibly supportive, and our friends, near and far, have offered their support. It really DOES take a village, and knowing that they will be there to support Aiden when I can't has meant the world. That alone takes a weight of me, and let's me focus on how to beat this thing.  I talked to a friend whose son overcame cancer and she advised me to just go day by day... its hard to believe that it has only been four days since I got the diagnoses, as it feels like a year.

Telling our 7-year-old was the hardest. He'd heard so many stories about people dying from it...  my childhood best friend passed away when he was nine from leukemia, and the stories of  that loss are ones he has grown up with. We reassured him as best we could and overcompensated by having an entire basket of pokemon cards, stuffies and chocolate croissants waiting for him when he came home.

We also got him the book The Goodbye Cancer Garden by  Janna Matthies, and it has been an amazingly uplifting way of approaching all that may be coming our way. It works its way through the seasons, the treatments, the challenges and milestones. It has helped him understand it in a way that its age-appropriate and hopeful.

Celebrations and Preparations

Now the hard part begins. We have to wait for the referrals, but in the meantime have to ready my business to run fine in my absence; prepare his teachers to provide support if needed; arrange how life will work while I am away.

Yesterday I got a haircut, really short. :)  I've never really had the guts to cut my hair short, but now I sport a do that can best be described as Tasha Yar's from Star Trek. ;) I figured that it was easier to take care off during a hospital stay, and if chemo makes it fall out it won't be as drastic a change as losing the long hair I've kept pretty much the same length for the past twenty years.  I had the hair dresser cut my ponytail off first though, and my son gets to hold on to it until my hair grows back again.

My son and family took it pretty well, and I actually like it - a needed change, and something else to mark the stage that is coming up.  Since two of my sisters and both my parents were in town  I talked them into going to the photo studio for a new set of photos... my other sister and her lovely twins were missing, but  at least we got most of them in the photo.  I figured I need something to look at and inspire me while I'm at the hospital, and something positive for my son to see too. 

With that in mind, this is our BITE ME, CANCER photo:





4 comments:

  1. Love the photo!!! And your new hair cut looks fab!

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  2. I tried to post this here on Sunday, but apparently blogger blocks wordpress accounts...

    Apis, you're hands down one of the most amazing people I've ever known. You write about those dark moments, but the strength that shines through with every syllable is moving me to tears, of hope more than anything. How many people our age have ever really had to find out how much courage they've got? You've had to find it out the hard way, and you've sure found a lot of it.

    Game of Thrones has just been on German TV this weekend, and I just felt reminded of an exchange with Eddard Stark and his son Bran: Bran- "Can a man still be brave when he's afraid?" Eddard - "That's the only time a man can be brave."

    I'm thinking of you. Constantly. And I'll be watching this blog to follow your journey.

    You've got a wonderful family and even though I can't do much from this side of the world to help, you've got friends all over the place.

    Let love be your energy.

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  3. hi my name is carol i live in sydney australia 1 am 63 i had appendix and colon cancer.in april 2012 i had an operation for a mucinous adena carcinoma which took 7 hours and i had my gall bladder removed and part of my liver and colon because this started as a tumour in the stomach and it was fused to my liver and bowel. i was given stage 3 chemo to hopefully keep it at bay. i am not a fan of chemo i do not want to go on itagain so i have been on the cancer active.com site in the uk it is so helpful i do not intend it to define my life.( i joke about losing weight you to can have a body like mine just get a dose of cancer) i havent been 60 kg since i was 15 i was 71kg before i got sick luckily i didnt lose my hair just got thin so now it is straight no more perms i like it this way as i now have an oval face.i havent had the heated chemo drugs in the stomach but if it comes back i will go to a prof who knows about this.i have bought the book from the cancer active site. everything you need to know to help you beat cancer by chris woollams.i am off to the surgeon for a check up my c t looks ok.

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