The days that turned into a month…

So when I first “planned” this blog post it was going to be a witty yet informative little piece about surgery, the interesting roommates I had in my shared room, my bionic pee (it was green! For real!!! Told you I’m bionic!) and the awesome quality of MSK hospital food. A few days later I’d be home, ready to chat about my daughters PreK graduation and about how this year for sure Jay has taken Father of the Year to new heights.

But alas, my ‘tough chick’ exterior surely took a beating. First up, a 4 day stay turned into 9 days in the hospital and I left not at all feeling well. Fast forward a week later and I was back in urgent care and the hospital for another 2 nights.

Ascites (old blood from the surgery) in my belly that had to be drained (3L worth!) and then a bowel that just doesn’t want to wake up and work properly…enter laxatives, suppositories, a failed enema, and 4L of colonoscopy prep and whilst I was sent home again I’m still not sure we are all in working order.

On top of this my belly is still severely bloated and hard because my liver is inflamed and it’s working really hard to get back to a manageable state (here’s where we hope the new chemo pump works).

Oh yeah, and don’t forget, chemo still has to happen in all this too. So whilst in the hospital I had my pump filled with Fudr which is some drug for my liver. And next week I need to go and get my systemic chemo in my chest port. It just never ends.

But as I’m watching a bunch of guilty pleasure chick flicks or laying back finally having the coherence to read a book I see the light at the end of the tunnel. It’s a long road but I will get there. The pooping scares me but I’m sure we can make this happen regularly!

And until then I rest in the knowledge that I’ve finally updated everyone so people know where I’m at because it’s been a fairly intense month I have to say.

There’s still so much to be said, and it will come in time but my attention span is a little short at the moment. But a huge shout out to my mum for flying over at the moments notice, Lyla for honestly being the most resilient, sweetest and just dependable little 5 year old and my husband. Without Jay at the hospital every day I don’t know what I would have done. Your husband aimlessly walking laps of your hospital floor is just the epitome of love 🥰

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Back on the rollercoaster

When I was working I used to liken my sales job to a rollercoaster ride. Intimidating at the very beginning but then you settle into a routine for a month, then the next month the roller coaster dips way down again only to rise up and dip again as monthly goals were presented, achieved, then a whole new set of goals were presented.

So it seems this analogy is also somewhat relevant for cancer treatments (enjoy the ride)! Trepidation followed by settling into a routine ‘my new normal’ as I get used to my treatment schedule and scans. And just when things are seeming manageable and ideally long term, a spanner (ok wrench for my Americans) gets thrown into the works.

This ‘spanner’ presented itself as ongoing liver pain. Not difficult to manage but what it meant was so much more to deal with emotionally. Liver enzymes start soaring (normal is 130 and at my last check it was 301 and scarier is that it jumped from 144 to 301 in two weeks). And a rising CEA, as well as increased tumor sizes in my liver. Quite the deadly combination. I’ve always said that the key to me living a longer life with this disease is keeping my liver under control, and these changes were just heart wrenching. I basically saw myself with a year and a half left and that terrifies me.

Interestingly when I went in for treatment last Thursday 16th May, my doctor presented some clinical trials that we decided to start working towards, but also suggested the HAI liver pump. This was music to my ears as generally the pump is reserved for those with only liver mets, but being that my lung mets are small and have not changed over the past year and a half she thought it would be a good option for me.

Friday I met with the surgeon, Dr Jarnagin, who promptly set me up for surgery on June 12th. I will spend about 4 nights in the hospital in NYC, and hopefully recovery will be swift. My only other surgery was in 2016 when I had the laminectomies. I recovered very fast from that, due in part to being fit and strong leading up to surgery. That is my goal again.

Now the nuts and bolts. The pump is the size of a hockey puck and will sit on my abdominal wall on my left side. A catheter from the pump will lead into the hepatic artery and directly feed chemotherapy into the liver. This ideally leads to the liver getting more intense doses of chemo and hopefully better reduction in tumors. In my dream world it will work incredibly well and shrink these babies down to a size that makes resection possible. But let’s walk before we run. I know the Doctors are likely considering this as a palliative measure just to prolong life, and hey, right now that’s good for me because without it I don’t know what other options I have.

Bionic woman I shall now be called. The pump is going to look super weird as it will be visible to everyone. I need to do some swimsuit shopping (I hate one pieces because they do not suit me, but it must be done) and worse of all, I don’t know if I’ll be able to surf again (that breaks me ☹️ but the whole lying on your stomach situation doesn’t bode well). But, on the upside we do have a surf paddle board so I guess I have a new skill to start working on this summer.

Wish me luck, I’m nervous but not particularly scared. It’s more the uncertainty of how recovery will go, and then how well the pump will work once it’s in. And yes, I still have to get IV chemo every two weeks even with the pump. No rest for the wicked, as the saying goes.

And I wouldn’t be so calm about it all if it wasn’t for my incredible mommy tribe. Within two seconds of uttering surgery these girls stepped up and have already promised to take Lyla under their wings and keep her happy and busy (the last week of school and half days to boot)! I love you girls. I honestly can’t thank you enough xxx

So now I must work out. I must be strong and I must have a vacation! Life is for living…go big!

Ali xxx 💋

A lesson in… this

As I sit here waiting for my turn in the chemo chair I contemplate what treatment days mean for me and how others view it.

I’m sure it elicits many varying responses or feelings in people…but whenever I experience treatment days I always feel that it’s greatest lesson is that in patience.

Labs (including blood being draw, weight and blood pressure checks), then Dr visit (usually preceded by the nurse visit who does all the heavy lifting …I didn’t even get to see the Dr today) and then the wait to actually get in the chair. By the time my 3 hour infusion is done I will have been at the NYC MSK facility for 7.5 hours!!!

Doing my treatment in NJ isn’t much faster, perhaps 5 or so hours but it feels better because I get to jump in my own car after. But in the city I still have to take a subway and bus to get home. Although fortunately I do have a light at the end of today’s tunnel, dinner with Miss Glitter and Sunshine herself 🤩

In regards to ‘where I’m at mentally and physically’ it’s been a sobering few weeks. Over the past couple months I’ve felt that the treatment plan I’m currently on has stopped working. Add to that a consistent liver pain for 3 weeks and I was starting to get very fed up and ultimately worried. However there was no way to know for sure as I had just had a scan and was not due again until June.

All I could do was continue on this regime, feeling frustrated that I was in limbo and effectively pumping my body with poison that isn’t doing anything to help me. And believing that the tumors are just growing inside me uninhibited.

Today I asked if we could scan earlier than my planned June timing and I got the ok. We will be heading to the CT machine May 13th and will discuss the results with the Dr on May 16th and likely switch my treatment plan that day too if my fears are founded.

Whilst scanning early is a minor win, switching treatment isn’t. I will be reverting back to the treatment I started on, Folfiri. Whilst I tolerated that quite well it’s visually very unappealing. It involves a couple hours of IV treatment followed by a take home chemo in a bottle that infused over a 48 hour period. Having to deal with the inconveniences of that, as well as still having tubes coming out of me is not ideal as it makes me look sick. It just makes this whole disease seem more real and I hate that Jay and Lyla have to see me that way.

But…patience…so I won’t jump the gun. I’ll just accept today for what it is and just hold out for the scan.

In the meantime I’m enjoying the warmer weather. I absolutely love my swim program every week where we swim about 2km (1.25miles) in drills. And I just started the beach body on demand workouts to give my exercise some focus. That’s all very fabulous and positive. Endorphins rule!

As long as I can exercise and feel good, I’ll just keep on trucking. I’ve got things to do, can’t let these pesky days hold me up!

Love to all (and a big thanks to Snapchat for making me somewhat photo worthy!! 😉) xxx

P.S…12 hours later. Whilst the day was long, there is something to be said about finishing chemo and going out into life in NYC and having dinner with one of my most favourite people of all time.

xxx

The night of treatment…

Such a weird night this always ends up being for me. I leave the treatment center (MSK Basking Ridge) feeling slightly groggy but mostly pretty awesome about how badass I am being able to endure 3 hours of IV chemotherapy and then drive my butt home and still put my daughter to bed. Albeit I’m in a slight daze and usually quite short with the bedtime routine tonight. Although I don’t know why, it’s not like I’m going to sleep anytime soon.

That’s where the interesting part of treatment night comes into play, those hours between 10pm and 4am where the steroids and chemo are ravaging my body and just having themselves a little party.

And boy does it play with my mind!!! My thoughts linger through my memories and making me think of things I want to tell people, my friends. And acts of kindness I want to do, and well so so much really.

Tonight it has ranged from telling friends my one best/most influential/lifeshaping or just happy memories of them. To then thinking how I have those memories for some, but not for all, but how that doesn’t actually define our friendships though because some just have so many amazing memories that all just gels into a happy ball of warmth.

I then think of all the friends I have, people who genuinely enjoy hanging out with me and being so supportive. I think it’s remarkable, but I think we all know that if you just live your life true to yourself, just being whoever you are, and being open and kind and honest with your friendship that you’ll find your tribe. What you put out definitely comes back. See I told you…drug dreaming 😯

This lead into thoughts of planning a cancerversary party as I see lots of my Colontown friends celebrating (that’s my Facebook Cancer family). Jay has been telling me I should have a party and I thought this could be totally awesome as it’s towards the end of summer and there is not much better than partying at the beach with the warm summer sun setting over you. It’s screams life to me. There is something so tranquil but also completely exhilarating about water. Must be my Pisces soul in her element.

I also remembered a bunch of other things I want to do for people, but they’re personal, and I don’t want to share them. Not because they’re bad or weird, but because they’re just for that particular person be it Lyla, Jay, friends or family.

Weirdly enough this night also feels like nights in my 20s when I just couldn’t sleep after a big party night! Enough said there! It’s annoying but can also be kinda cool too. I like seeing where my brain leads me. Although tomorrow is going to knock me out!

So as you see, my mind is on overdrive tonight so I’ve realised I’m just going to have to make better use of this night from now on. Use my drug induced insomnia to my journalistic benefit! Glass half full people.

So tonight I say…to Sleep!!! May it please come soon!!!

Xxx zzz

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

  • 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