Sunday, 29 April 2012

What's In a name?

We're back in Vancouver now.
Tomorrow I have a meeting at the Fraser Valley Cancer centre with one of the nutritionists there to hopefully help me figure out how to eat  in preparation for the surgery. I've been having lack of appetite, and over the last two weeks almost constant nausea - coupled with the pain it hasn't been that fun.  As I lose weight ( and the jelly gains more) I'm told I need to eat healthily and keep up my weight. Who knew?

While we were at the TBC Dr. T. said something that rattled me. It wasn't the statistics ( we knew those going in, and his stats post surgery are amazing, as per my last post); when I discussed the issues I was having with nausea he nodded, noting that he wasn't surprised. As the tumour is pressing down on my internal organs its making digestion more difficult -- he suggested that I try smaller meals but try and have them more frequently. This is one of the reasons why I'm seeing the nutritionist tomorrow.

The jarring part was that he called it ' the tumours.'

Don't get me wrong, I've been aware from the get go that that is exactly what it is - a series of tumours trying to take over my body, systematically  capturing strategic locations to call their own. They're the ones giving the pain, giving me trouble sleeping, giving me nausea and  so on. I know that. I KNEW that's exactly what they are, but when he said it I honestly  cringed.

It isn't a nice word. Its the kind of word that conjures up such darkness, such malevolence.  I realized only then that I'd been giving the thing nicknames... the goo, the jello, the jelly... etc. I didn't make up the 'jelly belly' term; it has been used by other sufferers before.  However, when my stomach first began to swell up and we didn't know if it could be a baby or some sort of cyst, we settled on saying that if it was a baby it would be a 'Connor' but if it was something else he would remain a 'Dubi' as it was of dubious nature.

Dubi is almost cute. Jelly is almost fond. I realized that calling it cutesy names wasn't helping me really face up to what it is -- a darkness that is taking over my body and that I want to ruthlessly destroy and rip away. So, wincing every step of the way, I think at least in my own head I'm done calling it the jelly. We will keep it up for Aiden's sake ( I think it helps take some of the anxiety away to do so), but privately we call it what it is, and take it on as the enemy it is.

In the next couple of days, I hope, we'll have a firm date for the surgery. So much to do before then...

Tuesday, 24 April 2012

The Full Tale - Consultation at the Tom Baker Center

Now that we have a reliable internet connection again, here is the full update.

Last night we stayed in Calgary, at a hotel near the hospital and the cancer center.  Needless to say it wasn't the most restful sleep; we've been both dreading and anticipating  meeting with the experts there, so  sleep proved elusive.

We got there first thing in the morning, and didn't have long to wait. We were soon shown into an examination room and met one of the doctors there that will be assisting.  They always  seem to start with the same question -- "So what do you know?"  which tends to send me into mental fits. But, as Chris put it, they want to make sure what information you have and which they will still have to cover.

They were very happy to get my CT scan and the rest of my records, as we'd brought a copy of all of them along. We HAD sent them a copy by courier last week, and it was signed for at the center, but it was nowhere to be found.  We found that having a copy of all tests/ records on hand was invaluable, as it cut down significantly on time; with the full information at hand they were able to get down to business.

After meeting me, examining  me and getting to see the CT scan (finally!) she proceeded to tell us all about the surgery ( the famous MOAS).  She was very patient in answering all the questions we had ( we'd brought two pages, neatly typed... just in case we might forget something) and in trying to explain the risks involved vs. the benefits.

In a nutshell, mine is the aggressive adenocarcinoma type, BUT its low grade... that means that although its actively spreading there is also time to tackle it, and with the operation and HIPEC there is a chance I'll be around in 10 years. And hey, in those 10 years, what other treatments might there be? Some people are cancer free at the 10 year mark, so I'm REALLY hoping for that one. The statistics of  survival without the surgery are fairly scary, so  hearing that I WAS a good candidate for it was amazing.

The dr. brought in doctor T., who was very straightforward but also really reassuring.  Within the next week we should know what the surgery date is, and the actually surgery should  take place in about 4-6 weeks. Why the wait? Well, they have a HUGE team of people that all have to be present during the entire thing, and the average for this type of surgery is of about 12 + hours. Additionally, since I had surgery at RCH not that long ago they need to wait long enough that the internal adhesions have healed; this will give me better chances of success all around.

The surgery is major; there's a minor risk of morbidity , and a 10% risk that they might get in there, find that it has contaminated organs that are vital and cannot be removed... in which case they'd have to close me back up and do nothing. BUT, as stated,  I have been pretty good about beating the odds in the past... this better be one too! :_)

It looks like surgery will -likely- be in late May, early June; organs WILL have to be removed, but they are in theory all non-essential ones. The idea being that they will carve out all the cancer they can, add in the chemo soup  to get rid of any rogue cancer cells left.  THe CT scan often doesn't show the extent of the disease, so they will only know for sure the ones that need to come out once I"m on the table.  The ones that we know will have to be out:  ovary, uterus, spleen, part of colon, omentum, gallbladder, peritoneum(?) .
The ones that they think might possibly also be affected and if so have to come out are : More of the colon ( on the other side?), diaphragm, parts of stomach and bowels. The jello is around my liver too, but we're hoping that the liver isn't involved at all.

WHEW.
So, as anticipated,  I will definitely be feeling more like a jack-o-lantern than I had before.

We discussed pain options as I'm in a fair amount of pain, talked about preparation for the surgery in terms of nutrition, issues with nausea and so on.  Oh, and (yay) I will also have to go through a colonoscopy before the surgery ( so in the next few weeks) to make sure there are no surprises there, and a series of vaccinations as my spleen will be removed.

Hospital recovery time he estimates will be about 6 weeks after the surgery ( given what he saw on the CT scan), barring any complications. Looks like I will be getting to experience a full Calgary summer!

After there's a likelihood I will have to go through 3-4 months of chemotherapy, but that will be back in BC.

So a lot of information, and much to digest -- but I'm glad we went in informed and ready to sign up for the  MOAS. Now we wait for the actual date, and try our best to prepare...


Consultation

Quick update, more later with a stable connection. Good news though! Had the appointment with Dr. Temple, and I am a go for surgery! There are of course risks and other issues, and the surgery is major... But its a fighting chance. We should have a date given to us in the next, and surgery probably at the end of May. Things are coming together, and a major stress off our shoulders! :)

Thursday, 19 April 2012

Onwards!

Tomorrow morning we set out on the Beating Jelly Belly road trip.
Next Tuesday ( the 24th) is my appointment at the TBC, so we should have more answers or a plan of what's ahead by then. The CT scan showed that the jelly is back on the attack, and has been trying to get at my liver, so I'm hoping with the new information and tests that means I can get the MOAS, and hopefully have it scheduled soon.

Aiden has found the school counselor to be wonderful, and the Fraser Valley Cancer Centre has a  Children's Club he can attend in May. He's doing amazing, and really pumped up about the trip. It makes me really glad that we choose to do it this way, and that he will remember this coming week as the time of dinosaurs and hoodoos, and not just mommy's cancer appointment.   Life can't be all about cancer, there has to be some living in there too!

Heard from several friends this week -- Thank you, your messages and support are helping us all getting through this. I'm blessed with a very close family, and they have been... beyond amazing. Past that though,  I have been blown away by the kindness of other friends, the sheer strength that has been sent our way.

THANK YOU!!!

Now I'm listening to my BJB Roadtrip soundtrack, starting with the "Eye of the Tiger." Off to battle! :D

Monday, 16 April 2012

And Thirty Years Later...

What a difference time makes.
Thank you for the emails and notes after my last post - I was a bit on the gloomy side, I'll admit. There are those days too, unfortunately, where things just feel a little overwhelming.  Luckily more than not they are nowhere near as numerous as the ones when I am feeling ready to take this thing on.

April 11th, the day before my oncologist meeting, was a special anniversary. It was the 28th anniversary of the death of my childhood best friend, Diego, from cancer. He died of leukemia when we was 10.  Before Diego I had never heard the word cancer. I didn't know what it was, or what it did. In fact, I didn't know that Diego had it at all. See, we were never told. We knew he got sick a lot, and was often absent from school, but that was about it.
During one particular long stint I found out that he was in the hospital, managed to get the number and reach his room. He was asleep, the nurse told me. I had wanted to speak to him so badly, and frustrated that I couldn't I asked her if I could tell her a poem, and if she could write it down and read it to him from me.

She agreed.
All of nine years old, I made it up on the spot. I don't remember most of it, but I remember I put into it everything I had. She promised she would read it, and  I hung up, happy. Hopefully I would see him soon, and I hoped he'd like the poem.

The next day we were at school when we were all summoned into my classroom and told that Diego had died.

Died? What? He was a kid. Kids didn't die, it was a fact. Old people did. But Diego was our age, so clearly that was impossible.  I was numb, and when another kid asked who Diego was I wanted to smack her. Diego was my best friend. He was my world. How could she not know who she was, how the world had just changed?

They told us he had been sick for a long time, and cancer had finally killed him. It couldn't be true. I'd seen him a week ago. I'd talked to him, and he'd smiled at me. I'd run past him after he said to go ahead to the playground, and he would follow. He'd promised.

The funeral was a blur. It was closed casket, and I was one of the ones helping to carry it. Not really, since I was a little kid -- but I held one of the corners, wondering how it was possible that all his sweetness and kindness could be held in a box. I wanted to look, but they wouldn't let me. I was convinced they were lying and he wasn't in there at all.

Diego was the youngest of his siblings, the baby of the family. After the funeral his parents asked me and his other two closest friends to come over to their house, gave us some of his toys to remember him by. I got his stuffed owl and ladybug, a book of fantastical creatures by Leonardo da Vinci. I still have all of them.  His parents told me that the nurse told them about the poem. She had read it to Diego just before he passed away.  She'd lost the paper after, so his parents wondered if I could remember it and write it down for them.

I did, as best I could. All I could think was how good it felt to know he'd heard me, before he went away.

I made so many promises to him that day; I promised I would live, and adventure, and travel. I would marry and have kids, I would do anything and EVERYTHING, so he could feel like he lived his life through me too.  I promised him I would remember.

I remember every year, but it had been a while since I had visited his grave. I no longer live in Colombia, where I was born and Diego is buried.  Last year, however, I had to go there with Aiden as there was a family emergency, and I made it a point to go by it and introduce them, as I never had before.  My stomach felt sick about taking my son to visit a graveyard, and yet I remember doing it almost every Sunday growing up.

My sister Ili and my mom came with us - my uncle Horacio is buried not too far from Diego's plot, so we decided to visit them both. I got a bunch of sunflowers and one red rose for Diego's grave -- and it took me ten minutes to find it, even having the map and the plot number. It was so overgrown, so forgotten. Below his lay his father, who passed away a few years ago, Fortunato. "Lucky". Fortunato who saw his youngest child die of leukemia at the age of 10.

I dug a little hole to put the water bottle in, to lay the flowers there. I cried as I washed over the grave and introduced my best friend to my son. I couldn't stop sobbing when I noticed that Diego and Aiden share the same birthday -- there was something about that that just made me ache.

Aiden thanked me. He thanked me for introducing him to Diego. For taking him to see his grave, and for knowing he was his guardian angel. We'd shaved his head because my sister did a horrible job trying to cut his hair ( she was sure she could, having seen a video on youtube about cutting hair), and seeing him there with his shaved head, big brown eyes and sweet, amazing heart made me cry harder. I couldn't help but seeing bits of Diego in my son.

The day before my CT scan I was remembering all this. I was remembering  when my son asked me why Diego had died at all. I answered that at the time ( almost thirty years ago!) the research simply wasn't there. In fact, if Diego were to get the same cancer now, I said, he would probably have lived through it just fine. So much has been accomplished and learned in those nearly thirty years.

There are days when I AM scared. Days were I contemplate a world without me in it, because I have to plan ahead the practicalities - the taxes, powers of attorney, will and arrangements. My mind is too practical in that way - I know that its morbid to discuss them, but I know that  in the event something WERE to happen the last thing I would want is for my family to have to deal with bureaucracy on top of everything else. 

I'm done my moping  ( did plenty last week!);  in a few days we head off in our glorious road trip of AWESOMENESS, to see Banf, Drumheller and other long postponed beauty along the way. Then on the 24th  I am meeting with the experts, looking over my tests and scans and formulating a battle plan.

Music Suggestions Please?

With that in mind! Mel and Andrea helped me start a Fight the Jelly  song list - positive music to put us all in the right mood. Since this will be a road trip I would really love suggestions on other positive, going-to-kick-your-butt songs!

So far we have:
  • I'm still standing- Elton John
  • Eye of the Tiger - Survivor
  • Gonna Fly now ( Rocky theme) - Bill Conti
  • Just Stand up (against cancer)- Rihanna, various
  • You haven't seen the last of me - Cher

Thursday, 12 April 2012

Wish I could think of a witty title just now...

CT Scan results and Appointment with the oncologist here were both today.
This morning we had to drive out to the Vancouver Cancer Centre downtown to get  my copy of the CT scan on cd. I want to have a copy of all my records, in case we need them to consult other specialists -- or just some missed and not sent ahead to the Tom Baker Centre.

Then we went for a creampuff. I'm aware that soon I will probably have to give up my occasional pastry, so since the bakery was right around there we picked a couple before we had to head over to Surrey to the  Fraser Valley Centre. Creampuffs were had, and they were glorious.  My appetite is getting better, and though my energy levels are still pretty low I'm slowly returning to some of my normal activities. Still have to take it easy, as I get easily worn out. I really miss my energy!

Dr. J and his resident Dr. C were really nice. It seemed a bit of a... pointless visit, because most of my questions he simply deferred to the TBC. He did reassure us that its THE place to be in Canada for this sort of Cancer, and the MOAS.  I got the distinct sense that he didn't really want to commit to any sort of treatment idea -- he's a chemo specialist, and  though he booked me for a follow up  he mentioned that any sort of treatment we can only discuss after I've been to  TBC and decided on a course with the doctors there.

The CT-Scan was a mixed bag, but at least we have it now and can forward it on to the TBC and Dr. Mack and Temple there. Hopefully with that ( and all the tumor markers and other tests Dr. J ordered) they will have a full picture and can advise us on how to best approach things from here on.

I still sit in those waiting rooms in a daze though - part of my brain refuses to believe that I have cancer. I suppose it will take my brain sometime to adjust.

JELLY BELLY ROAD TRIP!

Speaking of adjusting, our son has been having a rough time. He's a wonderful little boy, but he's terrified I'm going to die. We've tried to reassure him - we're going to the experts, I'm young and otherwise healthy, stubborn, etc... - but he doesn't want to be away from me for long periods, afraid something may happen. 

He tells me he's heartbroken, and its all I can think of that I wish my little boy didn't even know the meaning of that word.

So, trying to inject some more positivity and make him feel a little more proactively in control we've decided to drive to Alberta next week, instead of flying.  Partly its a financial consideration - chances are that once they clear me as a candidate for MOAS I won't have a date for several weeks for the actual operation, so we will have to all fly out then.  Also, this way we have a bit more flexibility.

Primarily though, we had been planning  a family trip to Drumheller ( Alberta) for the past two years, so we thought we will include it in this experience. This consultation doesn't have to be a scary, stressful time. We want it to be a family trip, to reassure him that we are still a family unit and a good, strong team. We got t-shirts made for the three of us!  We need to remember how strong we are together, and how that won't change no matter what may come in the months ahead.

Thursday, 5 April 2012

Oh my goodness -- Tom Baker Appointment booked!

I was talking to a friend the other day, about how this is the 'new-normal'. Life changes once cancer enters it, for everyone it touches in the family.  We are slowly adjusting to the new normal, thanks to the kindness of family and friends.

Aiden has had an easier time at school - his friends and their parents, bless them, have rallied around him, and he feels incredibly supported. How do I thank them for such kindness??  A couple of days ago our friend M. dropped by with a Totoro stuffy she'd made me ( GAMBATTE!) and yesterday Aiden brought me a snowy owl that I can have with me when he can't be there. Today, when another friend C. dropped by with some things for Aiden from her kids, I just about lost it.  It hit me, I suppose, that Chris, Aiden and I have a TEAM. That it isn't just my wonderful parents and sisters but the friends we've made in the community here, the friends we have scattered through the world, in literally every continent. I have  dear ones sending up prayers, sending me their love and good energy. I felt so thankful I couldn't hold it in.

I will beat this.  Spring is all around us,  and things are coming together. I can do this. We can do this.

Not five minutes after C. left and I had a good cry, the phone rang.

I have an appointment at the TOM BAKER CENTER!!!!!!!!
Its for April 24th, and its just the consultation; until they have seen me, given me a physical and have the results of the CT -scan we still don't know  how soon after that the surgery will take place. As their secretary reminded me, its really a case by case basis.

So nervous. So excited.

Wednesday, 4 April 2012

CT- Scan --- Check!

Well, that was anticlimatic....

Managed to take Aiden to the aquarium with my family today. We were there little more than an hour, and despite frequent sitting  I was rather exhausted.  I wish my bursts of energy lasted longer!

After that my parents took him for the afternoon, while Chris and I went off to the Vancouver Cancer Center for my CT scan.

We arrived there, nervous as could be ... and were done ten minutes later!
It was a strange sensation to be sure, but nowhere as terrifying as I'd thought. The tech was really sweet, and prepared me for the odd sensations that come with the injection of the radioactive contrast liquid, so  overall it was the easiest thing I've had done thus far.

Before leaving we made sure to request a copy of my scan for our records, and we will be able to pick it up next week before the meeting with the other local oncologist, Dr. J., on the 12th.

We headed home after that, and I slept the whole way here -- and the past 4 hours. I guess I underestimated just how exhausted I am these days; the sun was shining and the flowers are starting to peek out everywhere, so I really, really wanted to be out there, but I suspect I overdid it a bit.

I asked the tech about when the doctors will receive the CT scan, and she was a bit vague -- since its the long weekend coming up and they might not have the manpower it may be nearer the end of next week. She did make it a point to say that the CT scan had been marked urgent though, so she imagined my doctor would find ways of getting it sooner.

At any rate we will be starting to  phone Dr. Mc and the Tom Baker center directly come Tuesday.

Tomorrow we're off to the notary public; will, power of attorney and representation agreement all need to be ready and in order, so we're having those done tomorrow, just in case.

I'm really hopeful that with the CT scan things are really coming together now. If nothing else, having those tests in my own hand I can start poking around at other experts on my own too.