Gimme the news

Patience may not be my strong suit, but the waiting is killing me!!!

I had my CT scan done Friday 7th December. The one to put into real numbers what my plummeting CEA means. Today is Tuesday and I’m here waiting to see the Dr and I STILL don’t have the report. I’ve been checking all weekend!

I’ve always been good with scans. Most others in my position get ‘scanxiety,’ however I’ve always been excited for them as it’s the only way to know if the chemo is working. So every 3 months I scan and unfortunately none of them have been that great. But yet I still look forward to them.

But this one is a big one. The one I’m hoping gives me a new way forward. One step closer to getting rid of this disease. It’s also the news I get to take home to Australia and share with my family and friends over the holidays. It better be good….

UPDATE

Scan results are in! I’m very critical and have high expectations so the news wasn’t as wonderful as I’d hoped…but it was still bloody great. Lungs unchanged to slightly decreased (1.3cm x 1.1cm reduced to 0.9 x 0.7cm).

Liver saw decreases across the board, example 6.4cm x 4.2cm down to 4.1cm x 2.6cm. Which is about a 37% decrease. In 3 months. I’ll take it!!! Every decrease is a bonus for me and changes the game. Protecting your liver function is key in this battle and so far I’m on the right side.

The Dr also said that when Erbitux finally stops working that we may be able to look at targeted radio frequency liver ablation so thats very cool. Basically there is no end in sight for me. I’ve got options and I plan on exhausting them all.

So for now we keep on with the same treatment. I get a month break and next treatment date is the 9th January!!!

All that’s left to do is get to Australia baby!!! It’s time to celebrate the end of this year with some warmth. Merry Christmas, Happy Holidays to you all! Thanks for following me on this journey and being so supportive. I’m looking forward to a new year of new possibilities, lots of vacays and boundless happiness! To life!!! Salute!

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Not so glamorous

I am tough. I generally don’t let things get me down. And I take pride on being resilient. Like when I broke my foot in 3 places but didn’t know it for over a month (and was running on it), or when I had spinal surgery that removed 3 laminar and was skiing 3 1/2 months later. The sickest I’ve ever been was with a crazy sinus infection when I was 9 months pregnant, and I still managed to rally and deliver my baby 3 weeks later with no drugs! I don’t do sick, it’s not in my makeup.

That’s why this is kinda getting to me. For 14 months I’ve been dealing with one of the worst diagnosis you can get, yet I’m, for the most part, doing just fine. And that’s awesome. But the side effects. That’s the stuff that will knock you down. Not necessarily physically in my case, but mentally. The rash definitely is a kicker. It’s easy not to think about it too much because we don’t go around all day looking at our faces. But it is disheartening to see it and learn that you can’t use makeup remover wipes, or most moisturizers because they burn your sensitive face. It might sound like small things, but it’s constant reminders that you’re not living your own life anymore.

The latest development is less than glamorous and honestly not something I’m super comfortable sharing. Although something that millions of people deal with, it’s still not talked about much because it’s to do with butts and poop and well, that’s some of the problem with this particular cancer…it’s not pretty. Anyhow, hemorrhoids are not fun. Unfortunately they’re part of the course for many in my position as the drugs either tend to constipate you or give you diarrhea (lucky us). So it’s something we deal with but when they get really bad it’s super painful (tears on the toilet is not a look I was intentionally going for) and in turn requires more pills to hopefully clear them up.

On top of the physical comes the mental. The fact that I have to talk about this with my husband, and that sucks. We all want to put a ‘pulled together’ image forward for the world, but sometimes that just isn’t possible and the first person to see that weakness is your partner. And that’s ok, you’re supposed to feel safe there. But it sucks when you’re constantly having to share all these weird sicknesses and side effects with the most important person you want to make happy. I hate that Jay has to live with this every day and there’s nothing he can do to change it.

But at the end of the day, my resilience has enabled me to persevere this far and it’s only getting better. After 5 treatments of Erbitux my CEA has dropped to 20.7 which is fucking brilliant!!! I’m pretty stoked. So I have treatment on Wednesday and I expect my CEA to be down around the 15 mark (eeek!!!) Around the 7th December I will have a CT scan to quantify into tumor shrinkage what my plummeting CEA means. Then I’ll have one more treatment on December 11th before heading to Australia on the 13th. Phew. It’s going to be a busy few weeks but I’m ready.

In the meantime, ski season has started and it’s all sorts of glorious. I’ll keep you all abreast of my bloodwork and scan results, but in the meantime you can find me on the slopes. Ride on xxx

On the down low

It’s been about 3 weeks since I last posted and it’s been kind of an awesome time! Things are looking up and given my life and how fortunate I am I honestly don’t have anything to complain about!

First up, my CEA (blood work number that can indicate the level of cancer in your body), has dropped dramatically. Normal is 0-2. Heavy smokers that number hits 5. Cancer the number can soar. Anyhow mine got up to 128 in August (I was 66 when diagnosed). Now 3 months later (and only 3 treatment of my new wonder drug Erbitux), that number is at 27.9!! Say wha?! Hell yeah!!!

And before I found this little jewel of information out, I raced in the ‘Get Your Rear in Gear’ 5K, and I nailed it!!! Together we raised $701 so thank you all very very much. That was huge!

And as a ‘I got this’ stand I went on and ran a 7.49min/mile or 24:18 5K which was bloody brilliant (as I pat myself on my back. I’m totally good with that though). My Army showed out in great force again and I’m humbled to be surrounded by such amazing people who go above and beyond, because damn it was cold, but they all ran with smiles on their faces. Love you guys xxx

And to round out the pluses, we are booked to go to Australia in December. So much happiness in that statement I can’t even begin!

So, life’s good. I feel great. I’m beyond thrilled to be celebrating with my family and friends this Christmas. Celebrating where we’ve come and where we’re going and never ever giving up.

Kisses

Ali x

All aboard the pimple train

Erbitux…the rash drug…at the moment I have a love/hate relationship with you!

The idea is, if the drug is working you get this ‘acne like’ rash on your face and torso. Well, so far I’m assuming this drug is finally one that is working its magic because it’s doing a number on me.

Having not really had to deal with bad acne as a kid this is pretty freaking tough and it’s not even that bad yet (I’m currently infusing my 3rd treatment. I’ll have a total of 6 before my next scan). I’m not enjoying this at all but am trying to just get over that little thing called ego and just be stoked that it’s likely to be shrinking those pesky tumors. And I just found out that I can indeed wear makeup to cover it so I see a trip to Sephora in my near future and a pretty penny dropped on coverup (only approved brands allowed and of course they’re not cheap!)

The upside of having a face that makes me want to hide in shame is that I feel pretty bloody awesome! Where the Lonsurf made me vomit almost every day, and Xeloda made ALL the skin on the bottom of my feet peel off, after the Erbitux infusion I basically forget I have cancer at all (you know what I mean…it’s not exactly something you can ‘forget’ unfortunately).

So now I actually get to enjoy some me time. Lyla is in school, so with the extra time I’ve managed to go to the gym a lot, get a few 5k runs in (my dog Colby is super happy about that!) and even enjoy lunches and coffee dates with my buddies. Ugly rash be damned, I’m still a super social party girl at heart and no chemo drug will deny me of that if I can help it.

The dr and nurse I speak to have been really happy with my progress (scans not withstanding). I’m really active and whilst the irinotecan I’m taking is supposed to make you extremely fatigued, it’s not having that effect on me, likely attributed to the fact that I was and still am very active and fit. As I told them, my body doesn’t have a chance to give up and be lazy. I won’t let it. Rest is different and I know that’s important (I’m looking after myself ok mum 😁).

This weekend I will be putting my legs to work in the Get Your Rear in Gear 5k. I’m excited to be running again with my ‘Army’ and seeing many of my Colontown buddies there too. It’s a fun event and I welcome any and all of you to run with us, or donate to my team, Ali’s Army. http://join.coloncancercoalition.org/site/TR/GYRIG/GYRIGEvents-2018?pg=entry&fr_id=3697

More to come later…I’ll share a rash pic once I know how bad it’ll be after this infusion (and maybe another if I can get my fancy makeup face done 🤩)

Live on, laugh loud xxx

Looks are deceiving

“You look so good” never came with so many caveats before my diagnosis. Before I would say ‘thank you’ and feel pretty good that I had managed to pull myself together nicely that day. But now it comes with an undercurrent of ‘for someone with cancer’. Even if I am actually looking good that day you’re never sure if it’s real or perceived in the face of the disease.

But that’s not to say we survivors don’t want to hear it. Compliments are always welcome in any walk of life. But what I do want you to know is that, looks can be deceiving. The outside looks good but inside I’m hurting. Physically and emotionally. At the moment it’s absolutely more emotional.

And that’s the scary part. People that you don’t see all the time, when they do see me think ‘wow she looks great’ and honestly, I feel pretty good most days. But that’s not to discount the morning nausea, coupled with at least one visit with the porcelain throne to vomit, almost every day. And just being able to feel my liver is not a comfortable feeling. Couple this with the knowledge that inside my body is eating away at itself and I may not be around to see my daughter finish primary school is just devastating.

But for all the crying I do in the shower I try not to let it get to me too much because there is absolutely nothing I can do to stop it. All I can do is keep living so that I enjoy what time I do have and create as many happy memories with my family and friends.

And for some reason I’m feeling rather vocal right now so whilst I’m at it something that has been bothering me for quite a while now is how people respond to finding out that someone they are close to has cancer. I understand that it’s a hard diagnosis to hear. I’ve heard that some survivors have actually lost friends because of their diagnosis and that is just heartbreaking. I haven’t had that, but I have harbored some feelings of real disappointment following my diagnosis. People that I know care for me, who haven’t reached out at all, but then I know they are reading this blog and ‘saying’ I’m in their thoughts. So I want to put this out there. If someone you know gets a cancer diagnosis…reach out!!! A card, flowers, email, text, phone call. Something! A simple ‘hey, you’re in my thoughts’ goes a long way. Otherwise you’re just stalking and gossiping behind their backs.

Phew. So with all that out there, we now reach another turning point. I scanned last week to see how the Lonsurf regime was working…quick answer, it wasn’t. I’m so fed up with nothing working. Every scan is the same, “no change to slight increases across all tumors”. However slight means increases from 3.6cm to 4.5cm and that sounds huge to me.

I met with the Dr yesterday and we have decided to switch it up again (for those keeping up this is regime number 5) and add in an EGFR inhibitor to my previously used drugs of irinotecan and Avastin. https://www.erbitux.com/understand-erbitux/mcrc.html

Ideally this will work to continue to keep me stable and I can cycle through the IV treatments I originally started with again (with the addition of erbitux). The side effect to this little beauty is a rash. Oh joy. So as I told the Dr ‘you’re gonna turn me into a monster right before I go back to Australia’ gee thanks Doc. And in true cancer form there is always some cruel joke to whatever drug you’re on (severe diarrhea, rash, peeling hands and feet, neuropathy and extreme cold sensitivities). It just doesn’t end. But he’s prescribing steroids to control the rash a bit but ultimately you want the rash because it means the drug is working (funny how that works huh). So I guess cover up makeup lessons may be in my future. Or I’ll just deal with it. It could be worse right.

Anyhow, I start that regime next week (it’s going to be an 8 hour day going forward because the one drug takes at least 4 hours to infuse and 6 hours the first time). Of course because I’m always running by the seat of my pants I’ll be doing that on Wednesday and then I leave bright and early Thursday morning to go to Costa Rica so I hope the side effects aren’t too bad!!! And when i get back it’s going to be time to plan my flights to Australia. It’s going to be one hell of a Christmas party this year … get ready 🎇🌟

I’ll leave you all with this tear jerker of a video the super talented Noelle Soroka prepared for us following the photo session. It makes my heart soar to know Lyla and Jay can look at this anytime they like after I’m gone and see how much love we share ❤️

For Lyla

Ali xxx

Has it really been that long!

Over 6 weeks since my last post…and a full year since my diagnosis. I honestly can’t believe it.

And whilst I’m still feeling well I definitely have moments where I think the 5 year survival rate seems longer than I’m going to be blessed with (although other days I plan on blowing that number way out of the water). It’s such a mind mess this whole cancer business.

I’m currently on a drug called Lonsurf which I take for two weeks then I have two weeks off. I just stared my second round of this and it’s been fairly manageable with just mild bouts of nausea and a couple of spontaneous vomiting sessions (nothing worth worrying or complaining about).

However, I did get my blood work done yesterday and my CEA level (often used to determine the level of inflammation in your body with CRC) has soared from 76 to 127! Now it’s been sitting in the 70s and 80s so this was a major shock for me but I’m trying not to freak out. I have been informed by two other patients on lonsurf that their CEAs raised exponentially whilst on lonsurf but their tumors remained stable for about 13 months so maybe it just means it’s working?!? I’m hoping so but I do have a slightly inflamed liver too (coupled with mild liver pain) so a scan is being ordered perhaps as early as next week or at least by the 5th Sept so we will know more after that.

In the meantime I just keep living my best life, because I tell you what…it is. Cancer has given me the freedom to make holiday plans and do heaps of fun summer activities with Lyla. We were super lucky to have a gorgeous photographer Noelle Soroka come and treat us to an amazing photo shoot which was a load of fun and it’s wonderful to have more beautiful photos to add to our collection. And we have had so many fun outings.

Next week we are off to Lake George with some great friends and at the end of September I’m headed to Costa Rica with my sister in law and a buddy to surf surf surf. That’s gonna be huge!!! Couple those with also going to Australia at Christmas and well you can see that I’m certainly making lemonade with all those lemons. Hell, I’m making lemonade and lemon muffins and lemon cake!! Lol.

But it should all be known that without the best husband in the world none of this would be possible. Having someone who’s willing and able to say yes to anything and everything you want to do and who encourages it is a major game changer. I love you honey xxx

So enjoy the pics. Watch this space in the next couple weeks to see what my scan shows. That’s when we will know what my next steps are. Keep your fingers crossed for me that we see stability.

Pura Vida!

Changing it up

Seems like every time I have a scan we need to do something different. Clearly my body is resist to chemo (I knew I was strong but this is just comical).

Latest scan results were less than stellar. Slight increases across the board raising .3 to .6cm in all tumors…so the Dr says we have to switch it up.

Being summer it seems appropriate that I’ll now be on another oral pill called Lonsurf (did they know I’ve been working on my long boarding!!!?) I was initially concerned as I had read that this is used as a last line of defense against CRC but I’ve been assured that it’s not that bad and I can go back to IV (oxcali or irinotecan) later if need be, but he wants me to try this now as it’s less toxic on the body and has shown good results even as a first line drug.

Side effects include hair thinning (here we go again), nausea and general tiredness and weakness. But on the plus side my feet and hands should recover (the xeloda was ripping my feet apart and they have been peeling like crazy. So nasty especially during beach season!).

I really like my Dr and I’m confident he’s giving me the best options possible. I’m obviously disappointed in my results but I can only do what I can do and that means staying positive and just keep on enjoying life. So that what I’m doing.

I will be starting the pills as soon as I get them and it’s an interesting schedule of 5 days on, weekend off, 5 days on then 16 days off. During that time I will still get my Avastin infusion every three weeks.

Summer’s been great. Surfing, swimming, yoga and just enjoying being on a beach stay-cation with my little firecracker. We have so much bonding time in the summer that it’s really lovely. I’m lucky to have such an amazing little girl by my side.