The squeaky wheel.

It’s been quite a month!!! So much going on I’ve barely had time to think!

I’ll keep it fairly concise. But here’s what’s been going on:

  • My new Dr turned out to be “not the best person” for me. His demeanor and way of interacting with patients was not at all to my liking (enough that I cried after both appointments with him), and his dismissive manner was downright deplorable. So I wrote a rather scathing letter to his direct superiors at MSK requesting an immediate change.
  • I got that change and will be meeting with my new oncologist on April 3rd. She works out of the NYC location which is a bit of a pain but manageable. I will go back to Basking Ridge for my treatments which I’m happy about as I like the feel of the place there and I know many of the nurses and they’re super lovely.
  • Because of this horrible situation with the Dr it also propelled me to getting a second opinion appt at MD Anderson which I will have on the 25th March. I think that will be great in having a fresh set of eyes on all my results and seeing how another facility manages treating Cancer patients.
  • I will also be meeting with my original Dr at MSK who is now heavily involved with clinical trials so we can research if there are any trials that may be suitable.
  • I got the results of my PET scan. Basically no new news. My liver lights up like a damn Christmas tree and there are no visible resection-able parts so surgery is still not an option. Tumors measure about the same as they did in December but it’s difficult to accurately compare as the last scan was a CT.
  • There has been no discussion of radiation but I will be raising this with my new Dr in April.

And that’s where we are at. Sometimes we need adversity in order to spur us on to make some important changes and demand better treatment and I feel like I’m back on the right track. Although at the moment I’m a little in limbo as I don’t actually have any doctor I know personally that I can call with questions or concerns.

And in between all of that, we celebrated my birthday with a ski trip to Jackson Hole. Now that was fun (the cold I got at the end of it is still hounding me but the skiing was fabulous!) We had an amazing time, pushed our bodies to do some long and strong days of skiing and saw a bunch of moose!!! So cool.

About to start treatment #34!!! Here we go again. Last time at Montvale so I’ll enjoy the private treatment room and just have a quiet little 3 hour nap!!!

Enjoy the sunshine…it’s a gorgeous day outside xxx

Ali x

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    Changes abound

    I’ve been procrastinating about writing this post. Mostly because I’m not sure what I want to be writing about…there are so many thoughts that float around my head about dealing with cancer, but then I also need to just do the generic update information. So at this point I guess that’s where I’ll start for now.

    It has been an interesting start to 2019. Followed my trip to Australia with treatment 2 days after we landed back in the USA. Surprisingly that was the best thing for jet lag as I just got to sleep the whole time. Win!

    However following that treatment I was informed that my Doctor, whom I really like, was leaving MSK and I was assigned another Doctor. Blow number one.

    Secondly, the new Dr primarily works out of the Montvale location so it was in my best interests to switch centers and so a whole new group of nurses. Not a bad thing, but it’s not the same as going to Basking Ridge where I know the nurses and they all know me.

    And then the kicker…my CEA is starting to rise. On January 9 it was 14.1. It dropped to 11.1 on January 24 and since then has risen to 11.2 and after last weeks treatment, 12.3. Not the trend I wanted to see. The number isn’t terrible. But what it likely implies is.

    This rise does not bode well for the medication still working in shrinking tumors. Urgh. So I’m scheduled for treatment on the 6th March and then will scan again on the 12th March.

    I am scheduled for a CT scan but have a call in to the Doctor to see if I can change it to an MRI or a PET CT scan so I can see what is actually happening in my colon as well as my liver and lungs. As it is we have never gotten a complete picture of my colon as the tumor was too large to get the scope through during both colonoscopies.

    Anyhow, I have to say I did not take the increased CEA news well. After a dreary day at treatment (too many new things happening there) and the increase, I kind of freaked out a bit. I was depressed for sure. I am unsure of what my next treatment options are, and honestly it was the first time that the dreaded ‘5 year survival rate’ actually felt like more of a reality. I’ve tried very hard to stay strong, and this just woke me up and crushed me. It was a bad couple of days.

    But, we charge on.

    I’ve been really positive about what this drug may do for me, specifically for radiation and hopefully surgery (the ultimate happy goal!) But until I scan I just have to not freak out too much. I keep feeling like these tumors are slow growing which is great but I’m worried about what my next options are.

    There was talk of radiation with my previous Dr, so perhaps that will be on the table after the scan. Tumors need to stay less than 2cm though so whilst I was basically there at my scan in December we have no idea if they will still be there in March.

    Not all sunshine and rainbows unfortunately. But I have my head screwed back on tightly and I’m ready to keep trudging forward. I’m still skiing, I joined a triathlon training swim team which I’m super excited about, and I have had so many people reaching out to see how I’m doing and if there is another update which makes my heart swell xxx. I’m lucky to have such amazing friends.

    Until next time, keep your fingers crossed for me and don’t forget to wear blue on Friday March 1st for Colorectal Cancer Awareness Day! ✔️UR :

    Ali xxx

    The year of possibilities

    Welcome back everyone…here’s to a new year of possibilities, joy and memory making.

    My holidays were so special in Australia spending heaps of time with family and my friends. And whilst I talked a bit about my dx it was fantastic to just enjoy the sunshine, have lots of chats with friends and basically just immerse myself in Perth again. It was magical. We all had an incredible time.

    The only reason I came back so soon…treatment day. Blah. So today we find out what my CEA is after skipping one treatment in December. That’ll give me an idea as to how aggressive the tumors are and how long the medication is in my body and working. In my mind it’s actually good to have a quick little rest to reset and assess effectiveness of treatment.

    Now I wouldn’t say I looked after my body very well in Perth, but something has to be said for sunshine, clean air, pure happiness and delicious food!!!

    UPDATE

    Well a month between treatments meant that my blood was kinda thick and it was a struggle to get a blood draw. But we eventually got it to work with a bit of movement (clearly I needed to exercise some more to keep my blood pumping lol).

    And now…my CEA. At my last treatment a month ago it was 13.1. Today we clock in at … wait for it….14.1! That’s brilliant it didn’t change too much. Seemingly Perth agrees with me 🇦🇺☀️😍

    So we keep in the same road which makes me very happy. Now to get onto organizing baby girls 5th birthday party!!! Seriously..5!!

    Happy 2019 Everyone. Let’s own it!

    xxxb

    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!

    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