"All adventures, especially into new territory, are scary." - Sally Ride

Nov 15, 2014

So there we were. We got home from my apparently last oncologist appointment trying to process the 2 big pieces of information we were told. Every time I thought about the complete response, I was a bit in awe. Like this mythical thing happened to me. But it was immediately followed by the other piece of news of essentially losing part of Team Guardian Angel. Not expecting it made it worse.

If you haven't had canser, you likely won't really understand how devastating news like this can be. I know it must seem so strange that I'm not celebrating having 1 less doctor in my life considering I still have the rest of the team. But here's the thing...a complete response may be the best case for chemo. It is what they hope for going in. But it does not mean that it puts me at zero chance of re-occurrence...

Ah, re-occurence. That is like a four letter word in the canser world. I have not met one person who's gone through this journey who doesn't or hasn't feared re-occurrence. That's the thing with canser - you can be considered "canser free" but there's always a chance it can come back. And it's not it coming back in of itself that people seem to fear (at least that's not what keeps me up at night). It's if it comes back metastasised. When canser comes back metastasised there is no getting rid of it....most people live with it for the rest of their life - on treatment - and it's what ends up killing them. There's no padding that fact. For breast canser it likes to come back metastasised to lovely parts like bones, brain and lungs (other parts too but these are "common").

Last I checked, you need all those parts - they play a pretty important role in living....

If I am showing no signs of canser, how could my breast canser come back given I removed my breasts? This happens when during your original treatment a rogue breakaway cell isn't killed by any of your treatments (and it's too small to see) and travels to another part of your body and sorta hides there and grows. It can take years for it to "announce" itself again. But the chance is highest in the first 5 years. Once you pass 5 years, your risk significantly drops (but not to zero). Everyone I know in the canser world sees or saw their oncologist for this 5 year higher risk period. Why not a family doctor you ask? Because many of them are not trained to know what to look for and many don't want to b e responsible for detecting canser (since it's not their speciality - nice having a disease that even the doctors are leery of eh??)

Add to the fact that I don't even have a family doctor, and maybe it makes more sense why I was so upset.

And of course there's the question of genetics that comes into play with regard to my mind frame when processing the "no oncologist" info. My Dad had canser at 35. His mom had ovarian canser in her 60's - which did you know ovarian canser is a sister canser to breast canser? Ya, they are linked. If you are carrying the BRAC1 or BRAC2 gene mutation your risk increases significantly for breast or ovarian canser. Because there's 3 generations in a row with canser in my family, combined with how young I am (and my Dad was) AND that's it's triple negative, there is a chance it could be genetic. My oncologist sent in a referral to the genetics clinic after recommending I get tested. I haven't been yet but I am on the list to meet with geneticists in 6-12 months. I am not sure how genetics play a role in re-occurrence of the same canser (ie that affects chances of re-occurrence) nor do I want to know stats. But if I have the mutation, then I would definitely be at high risk for other cansers (I believe there's others aside from ovarian but I haven't done too much reading on this yet...)Anyways, I am not trying to depress the shit out of everyone, but having all this info in your head when being told "say bye to one of the best people to spot canser" doesn't exactly make you jump for joy. 

It scared me.

My Radiation Oncologist Dr Trotter called that night. She wanted to see how I was doing post surgery. She also heard about the complete response and was calling to say she still recommended radiation, even if complete response drops my chances of re-occurrence to 15% (I really didn't need or want to know the stats but she is all stats when it comes to explaining things...) I trust my team, so I am following her recommendation. She decided to schedule my radiation prep CT scan for Dec 1. Radiation will start Dec 29. Gulp. But at least I get a nice break through Christmas. And now I had a date to work towards to get back full arm movement. By Dec 1 I would have to be able to put my arms above my head. At this point I could only put them partially back and was doing arm exercises multiple times a day to help get back the full range of movement.

After I got off the phone with Dr Trotter I started wondering what exactly a full response meant. If I still needed radiation, did it really change anything?

Up to this point, no one from the medical community seemed overly excited about the news. Neither Dr Trotter or my oncologist say much about it other than "yes, it's good news". Was I making a bigger deal out of it then it was?

And then I got a message from Nigel - my Mall Angels' fearless leader, who happens to be a canser researcher! - that emanated pure joy at my news. And with his words, hope once again bloomed in my heart:

"...from my reading of the literature, the fact that you had CPR (complete pathologic response) basically cancels out the negative impact of being triple negative. It still all comes down to probability and statistics so nothing is ever certain (and I'm just a researcher not a physician!) but the odds have been swung dramatically in your favour by your response to chemo. Sooooo happy for you!!".

His message couldn't have been better timed if he tried.

That Thursday I met with Dr Taylor (from Breast canser Supportive Care) and when I told her the news, her whole face lit up and she gave both Phil and I hugs, "cause that kind of news deserves a hug". Her and Nigel were the first in the medical community to really seem to think this was news worth celebrating. It truly helped to put my mind at ease that it may have a positive impact on my future. Dr Taylor also further explained the need for radiation which really made me feel good about my decision to still do it. 

She basically explained that since there are only 3 treatments for triple negative - chemo, surgery and radiation - it would make sense that if research showed benefit of radiation that the docs would want to encourage me to do it since there is no hormone treatment to help keep the canser from coming back. They would want to use everything in their arsenal. It would probably be a different story if my lymph nodes were negative right off the bat - but they know for sure at least 2 were positive for canser. Plus given they didn't go in and remove a huge clump (15-30) I'd rather be safe than sorry. 

So between that reassurance and her also agreeing with what Nigel said, I left BCSC feeling very happy and at peace. Then Judit - a friend who is living with metastic breast canser (it came back 2 years after treatment) wrote me a happy note about what a blessing that news was.

Well, the 3 of them were able to fill me and Phil back up with joy and really enjoy this small victory. And it's not that I didn't appreciate any of the happy comments from family and friends previously....it's just hearing it from those who are so educated about how awful canser is and who are well aware of the re-occurrence issues and are up to speed on all the latest research, it was the "confirmation" I guess was looking for.

It was still a few more nights before we could celebrate with my favourite Guinness since I was still on antibiotics...

But finally, Saturday Nov 15, almost a month past surgery, were were able to toast to all the good news. 

Surgery was done.

Infection gone.

canser obliterated.

As I posted on Facebook:

" Victory never tasted so good...."

"Hardships often prepare ordinary people for an extraordinary destiny" - C.S. Lewis

Nov 10, 2014

We had to re-book my oncologist appointment because of our clinic visits from The Infection. We weren't too sure why my oncologist had booked an appointment other than just to check in. It was just past 2 weeks since surgery and we hadn't yet been to see my surgeon. I had no idea what the pathology said, but for once I comforted myself with the fact that a late call is probably a good thing versus an early one. My last "early results" call resulted in my diagnosis...

I have to say I was surprised they wanted blood work prior to my oncologist meeting but at the same time I was glad that there would be some sort of check that all my counts were where they should be post surgery and being on the mend from the Infection.

As we pulled into the Tom Baker parking lot, I mused aloud to Phil how strange it was that we should be so familiar with a hospital. We have spent countless hours up there the last few months but I still have moments of "this is so surreal that this place is like my 2nd home. I'm 36. And it's a hospital....". I guess you get used to just about anything when you do it often enough.

We can even distinguish between the veterans and rookies in this world. It's only been a few months but sometimes it feels likes I'm decades older from my experiences. My views on life and death are probably more akin to those of seniors than my own peers. When you have your first child, the world is never the same again. Suddenly it seems alot scarier than pre-kids. You worry more about the future, and if it will be good for them. 

canser has been similar for me. It robbed me of my "life innocence". That expectation that tomorrow will always come. The taking health for granted way of living that most of my healthy peers likely live each day. 'Knowing' you will be at your kids weddings. That you'll get to hold your grandchildren. 

My mortality reminder started the day I found the lump. And has never left.

It's not all bad though - it's made me cherish the good memories even more. I try to slow down more than I did before. I look at my kids every day with wonder, and so much love it's almost heartbreaking. I am thankful every, single day. And I feel things more - fear is sharper, happiness is bubblier, sadness is heart wrenching, gratefulness is all consuming...It can be a little overwhelming at times, but it's worth it for the way I feel in those unbelievably happy moments - the moments of pure joy.

I was about to have one of those moments, but didn't know it. 

We got blood work done - man was it busy that Monday!! Then we went and sat and waited for my oncologist. They do the blood work 'stat' so it gets rushed back to your doc within 1-1.5hrs after you get it done. 

Trish - my nurse - weighed me. While I was on the scale I said "Man, we forgot to get an 'after' weight post surgery. I'm curious how much 'the girls' weighed. I have people thinking like 10lbs! I should take bets...."

I couldn't remember how much I weighed pre surgery so she went to check. She came back a short while later.

"7lb difference pre and post surgery".

7lbs??? Holy cow!! Well that was the fastest way ever to lose that much weight....

She also told us the pathology was in. My oncologist would go over it with me since I had not met with my surgeon yet. 

While we waited for Dr Stewart to come in, I was initially excited to get the pathology back. But the longer we sat there, the more my thoughts wandered. What if there's canser left? What if some of the other lymph nodes had canser still? Will that mean more surgery?

Up till that point it had not occurred to me that there might still be canser left. 

Suddenly I was nervous. How would I feel if they told me there was still canser? I had no idea cause I had never considered it. 

In walked Dr Schoenroth, the lady who works with Dr Stewart. 

"So I have your results from the pathology. .."

Here goes nothing....

"Well, everything came back negative...blah blah blah...."



All negative? Did I hear her right? Doesn't that mean......

"So a complete response? Are you saying I had a complete response to chemo? There's no canser left? At all??".

"...yes, you had a complete response to chemo. Negative for all lymph nodes removed, negative for left breast tissue, and negative for right breast tissue...."

She probably kept talking, but in that moment it was like the weight of the world (that I didn't realise I was carrying) was lifted off my shoulders. It was like all the happiness filled my heart so that it felt like it was going to burst. Like I was floating on air. Could it really be?...this only happens 25% of the time...and it happened to me???

As I was still floating in a haze of joy, a few minutes later she said:

"...so this will be your last meeting with us..."

And just like that, she burst my bubble.

"What?".

The haze was gone and she was in sharp focus. My heart may have even stopped beating for a moment. It felt like my whole world had just been tilted on its axis and I wasn't holding onto anything. 

It caught me completely off guard.

"You'll go back now for check ups at your family doctor every 6 months..."

Family doctor? What? 6 months? She must mean 3 months...you 'graduate' to 6 months, everyone  knows that...she must be mixed up...

"I don't have a family doctor" was all I managed to say.

"Oh then there is a clinic run via Tom Baker by a nurse practitioner who does canser follow up appointments. She's quite passionate about it."

Nurse? What about the 5 year plan? Isn't my oncologist supposed to be with me till I hit 5 years?

"Is this new? I know others going through treatment and they follow up with their oncologist. I don't understand. 6 months? I don't feel comfortable with 6 months - isn't it supposed to start with 3 months? I can already see the light at the end of the treatment tunnel and it's making me nervous. 6 months without a check up freaks me out. I'll be a basket case by then."

"No, this policy has been like this for years. Only people with a special reason keep seeing their oncologist (I was thinking "I must know ALOT of special cases..." but I didn't say anything) What if we book you into the clinic in 3 months for a follow up?".

"Ok..." 

What else could I say? My head was spinning. You hear how tough it is once you are done treatments with survivorship issues and I'm not even going to see my oncologist anymore. My safety net was removed in a blink of an eye and I wasn't even finished my act.

I didn't even bring a Thank You card cause I had no idea this would be our last meeting. I didn't get to see Dr Stewart. I couldn't even shake the hand of one of the men who helped to save my life.

This completely tempered the good news of the complete response.

We left feeling less buoyed and more deflated.

I tried really hard to get the joy back by sharing the complete response news on Facebook. I shared it with my One Aimers too. But the excitement with sharing the news was sheer bravado on my part. 

I was still reeling from the fact that that was my last oncologist appointment...

"Don't give up! It's not over. The universe is balanced. Every set-back bears with it the seeds of a come-back". - Dr. Steve Maraboli

Nov 9, 2014 (still catching up...)

Suffice it to say the week was rough while I was dealing with The Aftermath (and the infection). So thank God my father in law Randy was with me.

He got me out for a walk everyday. That helped enormously. I could have just finished crying when he showed up in the morning - usually with a mocha for me in hand - and we kept so busy during the day that I'd be good till he left to go get the kids. It was like the eye of the storm during the hours between 9-5 while he was with me. Relatively calm and my spirits would be up. It was any alone time that would result in tears.

So really, a cry in the morning, and one in the evening (sometimes again in bed) isn't all that bad considering what a low point I was at. You could almost say it was good for the soul to get it all out. A (much needed?) release.

Wednesday I had my appointment at the clinic to see how I was doing and hopefully get the IV out. It was finally getting to be "emotionally unbearable" cause it limited me so much (the IV was in my hand so I had to be very careful and gentle that it didn't get pulled out or get irritated). It was also a constant visual reminder that I was 'sick' which was far from comforting. The canser was finally physically removed from my body (from surgery) so I should've been on the mend. Not slowed down - which is how I felt.

My wonderful father in law showed up Wednesday morning with my favourite car - his grey mustang. I love that car so I had a good morning, excited to get to go to my appointment in style. Course that's more than I could say for my 'look' with the fanny pack they gave me to carry around the IV machine.

"Don't hate me cause I'm beautiful". lol

I was also pumped cause I was going to finally be tube free!! No foreign objects attached or stuck in me. The day I got my last drain out, I had to trade it in for an IV tube. I was itching to get it out. The thought of showering without a bag on my arm (to protect the IV site) or with anything else that cramped my showering style was enough to make me giddy.

We got to the hospital and I had to stop myself from running to the clinic. The few hours before vacation are always the longest and most torturous. That's how I felt walking to the clinic. Then waiting for the doctor. It was almost painful ha.

Randy left the room while I was checked over.

"Looks good. We'll give you 10 days of oral antibiotics, same as the IV, only in pill form. If anything changes come back."

Ok.

My nurse (same as each clinic visit) came and took out the IV. I really wanted to do a celebratory dance I was so happy...almost manic happy!

No more tubes, no more fanny packs, no more red patch - it was time to celebrate! Given it was 11Am and I was on antibiotics, booze was not a good option. So we got celebratory mochas instead! One more hurdle behind me. That mocha was heaven. It was great sharing that happy moment with Randy.

The rest of the week we continued to go for our daily walk. Did some errands. I even made some kick ass, mostly organic, pasta sauce. Although it was still tough the few moments I was alone, the IV removal gave me a kick, and I think I started back on an upwards wave... except maybe for the emotions I was feeling about my sense of self. But by the weekend that was improving too.

I am so incredibly thankful Randy took that time off. It helped in ways I didn't realise until I looked back. It reminded me once again how lucky I am to be so loved and have such incredibly selfless people in my life.

Thanks Randy!