Merry Christmas!

Hi Everyone-

I am overdue in updating you on all things health. I mentioned in my last post that I would need radiation treatment. Well, not only did I already start that but I finished it as well. Five ‘fractions’ (five sessions), done every other day starting two Wednesdays ago. Getting to where I am now was really frustrating. Let me explain…

Radiation itself was underwhelming. Really. The easiest treatment I’ve ever gone through. For those of you who don’t know, you really don’t feel radiation. The kind of targeted radiation that I recieved was designed to be precise and only affect a narrow band of tissue in my mid-section. The hardest part was getting down to Philadelphia every other day. If you recall, I live two hours away so it’s not exactly around the corner. Fortunately for me, I had a lot of help from family, friends, and even co-workers and this made things a lot easier on me.

What didn’t make things easier was my insurance company. I would like to address the American healthcare system: YOU. SUCK. I went through my personal version of hell (um, I’m being a little dramatic, but only a little) as my insurance company repetedly denied my treatment, suggesting that it was “not medically necessary”. After at least two appeals and two peer-to-peer conversations with my doctor they finally gave in and approved it. That was not before I spent 5 days in a panic, wondering why my insurance company would approve the surgical removal of my lung tumor but wouldn’t allow me to radiate. Getting told you can’t have the treatment that your doctor is recommending is devastating (feeling like this could be considered dramatic again, but seriously, it felt like the end of the fucking world). I’m okay now, obviously, but WTF.

So none of you knew that was going on. And part of me wanted to tell you, but a major part of me was too depressed to write. I am learning that although I do enjoy writing creatively, but I am completely uninspired when I’m going through some hard shit. There are good reasons for that. First, I seem to be better at reflecting on the past than writing from the present. Maybe it’s easier when I’m at a comfortable distance, or maybe I’m just more objective and level headed. What I can say is that I don’t much care for telling you all my bad news. I have an unhealthy, but human, desire to keep everyone around me feeling comfortable. It’s not my job, but I feel compelled to deliver my news in a way that ensures the reader isn’t feeling bad for me (don’t be a downer!). And you know what? I have good reason to feel that way.

Did you know that when I write a post that leans towards the heavy and dark side, I usually get a fraction of responses in the comments section? I don’t write this blog for the ‘likes’, I swear, but I can see how many people read it, and people are much more inclined to interact with me on the positive posts. Hmmm. So sometimes I get the impression that you don’t wan’t to hear about the negative stuff- I mean, I don’t want to either, so I get it. So I stayed quiet and internalized everything. And what happened was that a number of people reached out to me to see how I was doing. If you did that, I thank you. I know that all of you read this because you love me and you genuinely want to know what I’m up to and how I’m doing. I also understand that the reason I started this blog was because I wanted my health updates to be accessible to all, partly because it’s impractical to answer everyone’s questions or address concerns individually.

I’m not sure what the solution is. Probably need to get more comfortable sharing my pain. Perhaps, keep in mind that I like knowing you are out there, hearing me.  So comment away!

Today I am a couple days out from my last treatment, I’m feeling good, and my parents flew in to New Jersey to spend Christmas with me! OH, and I’m going to be and auntie!!!! My heart is so full. I hope you are enjoying the holidays in whatever way makes you happy. Merry Christmas, ya filthy animal….and a happy new year!

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The last 7 days

TODAY:  I’m not really one to burry the lead, so let me first say that my scan was today and I have already recieved the results.  If you recall, they were following up on a new lung nodule to see if it had grown over the last six weeks.  It did.  A little.

So, now what?  Well my doctor and I have decided that the best course of action is to radiate the lone nodule and continue taking the Ibrance until the cancer becomes more resistant to that drug.  I am happy about this because it means I don’t have to switch drugs just yet- we can squeeze a little more life out of it.  One round of radiation will be done over the course of a few days and then my next scan won’t be for another 3-4 months, so that is nice.  I like having lots of space between scans.  It means I can almost forget about it for a while, which is especially nice over the holidays. 

…And just so you know, I’m not trying to glaze over this news either, it’s just that I have had a lot of time to process this.  Even though disease progression is never a good thing, this is a fairly good outcome.  I wasn’t expecting that I would be able to continue with my current treatment plan.

YESTERDAY:  New Jersey was hit with it’s first snowstorm of the season. Usually we don’t get so much snow right out of the gate, but the amount of snow wasn’t really the problem.  The whole state, but especially the northern half, suffered from the WORST statewide traffic jam Jon or I have ever seen.  I can only imagine that this made national news, but in case you missed it, here is a link to some of the reports.  Jon had to commute in it and spent six and a half hours getting home!!  This is a drive that should only take about an hour.  Much of the highways were just parking lots and for some reason there were no plows in sight. Crazy!

FRIDAY TO WEDNESDAY:  I was in Key Largo.  It’s not really my story, it’s my brother, Kevin’s.  He and his fiance Samantha got married on Monday and quite a few family members and friends traveled down south to bare witness.  The wedding was absolutely beautiful.  The resort was a georgeous.  The sunsets were amazing.  The weather was fantastic.  Everything about it was just perfect, perfect, perfect! 

I am so happy to have been a part of their celebration. Kevin and Sam did a great job planning the whole thing (Congrats, you two!!).  I think Jon and I enjoyed Florida more than we thought we would.  It was ‘instant Summer’ and this made it hard to return to New Jersey, knowing there would be cold and snow waiting for us.

Well, it’s been a week full of ups and downs, but now it’s the weekend and I’m just planning to relax 🙂

Take care,

Lindsay

Scan results were inconclusive

My scans were today.  One CT scan and one bone scan, as usual.  I mentioned I was more nervous this time around and that turned out to be somewhat validated.  My overall scan results were pretty good.  My disease remains to be stable and under control, however there is a new 7mm nodule in my left lung.

The nodule is very small and the doctor was not overly concerned about it.  We aren’t even sure if it’s breast cancer because it just showed up and we haven’t been watching it for long enough.  I have to return in six weeks to get another CT scan which we can use to compare to the images from today.  If there is significant growth, that means the cancer is becoming resistant to the Ibrance/Letrozole and I will be changing medication.  If there is no growth, that could mean that it’s not cancer and we can keep treating my disease with the same combination of medications until something else changes.

The reason I have been so stressed out lately is because I was preparing for this day, so when I finally heard the doctor say there was a tiny growth I didn’t have a big reaction.  I am relieved that there is no cancer explosion happening in my body.  It’s possible that the tiny nodule is not cancer at all, but something benign like scar tissue.  Many people have lung nodules that are not cancerous, but it’s important to consider that I’ve been on Ibrance for over two years and it might be reaching the end of its usefulness in terms of my cancer.  This day is coming, and whether it’s later this year, six months from now, or six years from now, there will be a day when I have to move on to the next medication.

No matter what the results of the test are, it’s a relief to know what is going on.  That, in itself, is power.  I still want to update you on my ride, but that will be a separate post.  There is a lot to tell!  In the meantime, you can expect another medical update in mid November after my follow-up scan.

Love,

Lindsay

Tour de Pink Weekend Is Here!

This is going to be a bit of a hodge-podge of updates for you all because we have some catching up to do.

First things first, today I am leaving for my three-day, 200mile bike ride which starts Friday morning.  Thank you Donors!  I could not have done this without your support!  If you have not donated and would still like to, it is not too late!  I am only $1,020 away from my goal, as of this morning.  Click on this link.

Also, if you would like to track me through the weekend I am going to attempt to make that available by sharing my location via Google.  If you’re interested in that, send an email to lindsaybeatscancer@gmail.com and I will do my best to accomodate that (It would be way easier for me to post the link here on this blog but my sensibilites have me thinking that’s not a good idea for safety reasons…have I seen one too many lifetime movies??)

So, what else has been happening in my life, other than lots and lots of training?  Well, I have a scan coming up next week (October 3rd) and I’m a bit nervous.  Thankfully, I’m also very distracted with the bike ride and the last few days of waiting is always the hardest.  I’ll post some kind of post-scan update later next week so stay tuned for that.

Other than that, here is a highlight reel from the last few months:

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Me and my new bike on a training ride (Awesome bike donated by LIV)

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Jon and I took a road trip to North Carolina and Tennessee.  He LOVES having his photo taken!

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We saw the BEST concert ever, which was in an actual cave!  Check it out: Last Night On Earth by Murder By Death

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I raised a hord of about 20 monarch caterpillars.  This one is munching away on some milkweed.

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After they came out of their chrysalids (plural for chrysalis, aparently) I tagged them for Monarch Watch and released them, but not before getting a quick selfie.

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I went camping in Belleplaine State Forest with my workplace besties.

Those are the highlights.  There were frustrating and down times as well which I did not photograph.  I get stressed out when a scan is approaching and that has a tendancy of permeating stress through everything in my life.  I try to manage Scanxiety with a combination of therapy, meditation, and exercises, but if I’m being honest I also rely heavily on ice cream and missplaced anger.  I hope you are all doing well!  If it has been a while since we’ve talked, I would love to get an update from you 🙂

Love,

Lindsay

Training rides

Tour de Pink is 10 weeks away!  Team MetaThriver is getting a lot of group rides in.  Actually, I haven’t been out on a solo ride all year!  But I’m okay with that.  For me, biking is social and there is strength in numbers.  We can entertain eachother, cheer eachother on, and we are more visible to cars (that’s a big one).

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Kara and I, mid ride

Last weekend, my teammate Kara and I ventured outside of our immediate surroundings and took our bikes to Hunterdon County.  What a beautiful place to ride!  Honestly, we could not stop exclaiming how beautiful it all was.  We rode from Alba Vineyard, over the ‘mountain’ (in NJ we call them mountains but they are tall hills, sorry NJ), down to Frenchtown, across the Delaware into PA and back up the other side to end up at the Vineyard again.  Frenchtown seemed like the place to be for biking.  I recognized it as one of the towns I went through for TdP 2016 and 2017.  Kara and I agreed that this was definitely an area that we wanted to come back to.  I am enjoying my time on the bike more than ever before because I feel like I’m getting better.  Stronger.

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More proof that I am putting in the work

Our total distance on Saturday was 30 miles and our elevation was 1200 ft of climbing.  The hills were a little intense, but we need to keep training for Tour de Blairstown which is 2.5 weeks away.  Tour de Blairstown is a 42 mile ride through a hilly part of the state.  It will be a good training ride for us and I’m pretty sure it’s more elevation in 40 miles than the entire weekend of Tour de Pink.  In my mind, we are at the point where we can plan our rides for intensity or for distance.

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We made it!  Now let’s drink some wine 😉 

I’m so glad to have my biking buddy, Kara, with me on these rides.  We’re having a lot of fun exploring the countryside of Warren and Hunterdon County (arguably the best biking in the state, for a number of reasons).  If you are still thinking about donating to our ride, my teammate Kara could use some love on her fundraising page.  I’m going to link it below.  Have a wonderful week, and remember…July is the Saturday of Summer.

To donate to Kara: https://east.ysctourdepink.org/KaraHasko

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Cheers!

The Brassville Graystone

What have I been up to?? Well, we moved for starters! Jon and I have been busy packing, then unpacking, and we are finally getting settled. We upgraded to a bigger space down the road and it is hard to imagine how we were ever living in a one-bedroom. I am sorry if I’m sounding like a privelaged jerk, but we had (and still do have) a lot of stuff. The list of upgrades includes: an extra bedroom, an outdoor space, a beautiful new gas stove, and a DISHWASHER! Two words on the dishwasher- Life. Changing.

Another upgrade is that we finally got a couch! Jon and I finally made a design decision together. Picking out a couch with your S.O. should be considered a relationship test. It wasn’t easy, but we finally decided on this lovely, modern sectional:

Sofa I Like

I’m just kidding. I could have picked something like that and Jon probably would have agreed to it if I fought hard enough. I actually found a couch I liked and I told him “This is the couch I like. I want to get it.”, to which he responded, “Ok, but before we buy this I want you to sit on one more couch”. While the saleswoman was away getting our paperwork ready for the new couch, he leads me over to this gray blob of a couch. You can’t be serious. But, yes, he is serious. So he sits down on this couch, and tells me to have a seat right next to him. Then he hits the button to recline…

We got the damn blob couch. Meet the Brassville Graystone.

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I am an adult and I could have made a different choice, but it was comfortable. We agreed that the couch that goes in our appartment should be comfortable- something we like sitting on. So I no longer call this The Ugly Couch or The Blob Couch. Instead, I call it the cloud. Because that is what it is to me 🙂

These are the four stages of sofa selection grief:

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May scan results are in

Another scan complete and the Ibrance/Letrozole is still working!  I’ve been on Ibrance for two years now and it shows no signs of slowing down.  This is the news we were expecting, but it’s still great to hear my doctor say it.  I am feeling more confident lately about my treatment and my prognosis.    My next scan, I expect, will be in another four to five months and until then, I’ll be enjoying my summer 🙂
At the beginning of the month I was in DC for the National Breast Cancer Coalition summit.  It was really interesting and I got to meet up with friends that I met last summer in La Jolla at Project LEAD.  It is crazy how quickly you can become good friends with someone when you have cancer in common.  It seems to accelerate the process, although so does the week-long intensive course that is Project LEAD.  NBCC doesn’t mess around.  They are lazor focused on ending breast cancer by their deadline of 2020.  If you’re interested on reading about how they plan to do that, I’ll link their website here.
The summit ends with lobby day.  We split up by state and I visited New Jersey’s representatives to talk with them about NBCC’s initiatives.  It was fascinating!  I want to tell you all about it, but I’m going to save it for another day because there is too much to cover.  All I really wanted to do today was to let you know that my scan results were good.  Have a wonderful weekend!
Love,
Lindsay