It’s Lung Cancer Awareness Month!

It’s that time of year again! Are you aware, according to the American Cancer Society, it is projected that there will be over 234,000 new cases of lung and bronchus cancers in 2018 alone??? About 8,500 of them are expected to be in NC. Of the men and women with lung cancer, about 17.9% have never smoked.

For those of you not on Facebook and haven’t already seen, Gwen would love to help raise money for research on her specific type of lung cancer (ROS-1). Here is a link to her fundraising  page: Gwen Strong – The ROS1ders .

I know it has been forever since I have written. Life has been busy and Gwen has been fairly healthy so there hasn’t been much to report! She ran in the annual LUNGe Forward 5K sponsored by the Lung Cancer Initiative of NC.

Gwen was the first female survivor to finish AND got first place for female in her age group! Justin won in his age group as well.

Here’s a shot of all the GwenStrong winners. We were well represented on “the podium.”

She had an eye appointment recently and things continue to look good there. Last week was “scan week.” I had the opportunity to travel with her to Boston. There are a few tiny nodules that are showing in her right lung. These apparently have been present on the past couple of scans, however they are so small that they were not noticed until an observant technician saw them last week and then the previous scans were pulled up to compare. However, these nodules were NOT present a year ago. Both Dr. Garst here in Raleigh and Dr. Shaw in Boston are not concerned at this time as these nodules could simply be a sign of some kind of normal inflammation that we would all occasionally get and never notice, but they will certainly be keeping a close watch on these spots over the coming months.

Other than that, the rest of her body scans were free and clear. Her brain continues to be clear of all the tumors that were present before, and Gwen is not reporting much in terms of side effects.

Doing what we do. And looking like we got up at 3:30 am just to sit in traffic…

The FDA is getting ready to approve the drug that she is getting in Boston, which is cool, but it will likely only be approved for patients with ALK lung cancer even though the drug is clearly also working for patients with ROS-1 so the FDA should stop being stingy with their approvals. At any rate, Gwen would like to stay on the trial to continue helping ROS-1 research, so she will still have to travel up to Boston but may be able to go less frequently in the not-so-distant future.

It was a lovely day in Boston and we actually got to walk around some. The picture on the left is the view from the hallway outside the drs office and the pic on the right is said hallway. Gwen and I both just really like that hallway. It looks cool.

And She Just Ran…

Hello again all! I have been a bit negligent in my updates, but as they say, no news is good news, right? If you are on facebook, then you have likely been keeping up with the goings on with Gwen. But if not… then here you go:

We have hit the road running with another school year after a full and amazing summer. Gwen spent time training for the annual Lung Cancer Initiative of NC LUNGe Forward 5K here in Raleigh. Her goals (other than, you know, fundraising to help the fight against lung cancer) were to A) run the whole time and B) to finish the 5K in under 35 minutes.

I am happy to report on Gwen’s behalf that she completed both goals AND that her fundraising team (#GwenStrong) was one of the top 10 fundraising teams! Thank you to all of you who supported her team from near and far. GwenStrong had a good showing in the medals as well with Gwen being the first female survivor finisher and Justin, Mom, and Dad all medaling in their respective age groups.

Just a couple of short weeks later, Gwen participated in another 5K! This one was a fundraiser at her school. Due to some favorable conditions, she was able to shatter her personal best time by about 4 minutes!

This week was a trip-to-Boston-week. She had scans in Raleigh on Monday and a check up with Dr. Shaw in Boston on Thursday. When we last got a scan report, we were told that she spot(s) in the brain scan were only noticeable to the drs. because they knew where to look (that’s how tiny they had become). This week, the scans were reported as being CLEAR. Nothing in the brain (I don’t think I will ever not feel tempted to make a joke here – sorry Gwen), and nothing in the lungs. No more lung cloud, no more pin prick tumors in the brain. Simply remarkable. The Boston skies were as beautiful as her scans.

Gwen feels very blessed. Thank you for praying for her, asking about her, thinking about her.

We Came, We Saw, We LUNGed

Today was the big day; the day of the LUNGe Forward 5K. Thank you one and all for your kind support and donations large and small. Team GwenStrong was recognized as the fourth largest as well as the 8th in donations. With your kindness and generosity, Gwen’s team surpassed her goal of $3000 by $1610!

And some of our runners took home medals again this year… Gwen (survivor racer), Justin (#1 in age group), Austin (#1 in age group), and Gennilee (#2 in age group). Callie and Lachlen got medals in the kids dash, too.  Way to represent!

Here’s a mess of pics from the day. First was the introduction of the survivors. Gwen led the moment of silence. She is the one with the microphone.

Next was the mile run. We sent Lachlen off by himself and then got worried when people were finishing and he wasn’t showing up, so Kevin went and met up with him. It turned out he was right around the corner and said that “it worked out great” that we sent him alone because he made a buddy. (Some older guy).

 

And then they were off!

Stroller brigade: Penny and Emma, Mom and Dad with Callie

Dr. Garst on the right

And just a quick 22ish minutes later, Justin and Austin were back. Following not too far behind was one of our pastors, Bruce.

Justin overtaking this hand-holding couple at the finish.

Pastor Bruce praising the Lord he made it to the end!

Here is Gwen and Friend Kristen (not to be confused with Sister Kristen). In the first pic Gwen is waving to us.

Next came Will, Kenlee, Kevin, my parents, and a whole bunch of others whom I did not photograph (my apologies).

The last race of the day was a kids’ dash in which Callie and Lachlen participated.

Lastly, the awards assembly!

Again, many thanks for your support! The Lung Cancer Initiative of NC LUNGe Forward has raised $149266 as of this publishing.

 

 

Gwen Goes To Boston

Remember in my last post when I mentioned the ROS-1 specialist in Boston, Dr. Shaw? Well, Gwen got herself an appointment with her and went up to Boston. We just so happen to have a cousin up there (shout out to Liza!), so Gwen had free lodging and a chauffeur for her trip as well. Mom made the little hop from NY over to Boston to attend the appointment.

This is Gwen and sister Kristen. (A pic with Liza would have been appropriate here, but I didn’t have one with just the two of them.) 

Here are the main takeaways that Mom and Gwen shared: Dr. Shaw is a genius, there are a lot of clinical trials on the horizon, cancer is complicated, Dr. Shaw and Dr. Garst will be collaborating (awesome!), Gwen will stay on the current course of treatment for now (Xalkori).

Okay, now the longer version. Remember that pesky lung cloud? On our last episode, the lung cloud was shrinking much to the excitement of the studio audience and the viewers at home. Well, it is Dr. Shaw’s opinion that the cloud of cells appear to be shrinking because they are really just becoming more concentrated and that their powers combined will become another tumor.

Now, before you get too worked up about this latest news, this is supposed to be not too upsetting… this is weird, I know. It is Dr. Shaw’s belief that Gwen’s body is resisting the Xalkori. She says that this is what happens when the resistance begins; a very slow progression (the cloud has been present since February). If a tumor forms, then it can be biopsied. If it can be biopsied, then they can test it to determine which mutation is present and therefore which medication can be used next.

So, Allisen, why did you say that she is going to stay ON the Xalkori two paragraphs ago? Gwen still feels fine and can breathe fine, so for now, it appears that the only part of her body effected is her lung. I guess we are going to hope for a tumor growth?? so they can biopsy it to help determine the second line treatment… so bizarre. Eventually, if needed, chemo will still be an option since she responded well to that the first time.

In the meantime, please consider joining Gwen’s LUNGe Forward 5K team, GwenStrong, even if you only participate from your couch. She’s harassed many of us on Facebook about it, already… The 5K takes place on September 25!

 

Last year’s GwenStrong team; Dr. G in the blue raincoat.

Summer Scan Time

Greetings all! We have returned from our lovely time up North, which means, sadly, that school is starting this week. We had a very nice summer with a lot of beach days, very little rain, and nice side trips and visits with friends.

We also attended a wedding in Erie, PA.

Oh yes, and Gwen had a birthday.

Upon our return, Gwen had her check-up with Dr. G. complete with brain scan; good news, her brain is still there and the scan showed all is clear. Also, she had a CT scan and a bone scan (it has been a year since her last bone scan).

Prior to discussing scan results with the doctor, Gwen asked Dr. G. about a ROS-1 specialist that some members of her ROS-1 facebook group have mentioned. Dr. G. knew right away about whom Gwen was referring and said that they could certainly set Gwen up with the ROS-1 doctor, Dr. Shaw, (located in Boston). She informed us that Dr. Shaw’s group is the group that discovered ROS-1 and that she would certainly be a valuable resource moving forward.

The CT scan showed IMPROVEMENT in the lung cloud! Gwen just knew it was going to be better. She had a feeling. The cloud has been present since February and got increasingly more dense through June. We compared today’s scan to the ones done in May and June and today’s looked better than both May and June’s scans! The cloud is still there, but it does look a bit less thick, if you will.

We then discussed her bone scan and compared it to the one done last August. (As a reminder, previous scans had shown lesions on her right hip and on her T4 vertebrae). The bone scan today did not show anything on the right hip OR the T4! There was a spot on the back side of her left hip, but Dr. G. wasn’t sure what that was. She continues to get shots every few months for her bones to help strengthen them.

Dr. G. remarked that Gwen was the healthiest looking patient she had seen all day! Such a nice way to wrap up the summer. Her next appointment will be in 3 months. There will be no changes in the course of treatment at this time.

On a separate, but related note, we hope to see some of you at the LUNGe Forward 5K which is being held September 25 this year (as opposed to November; avoiding election season). Gwen is famous because she is on their official publications.

Please consider walking or running with us on the Gwen Strong team! Or you can participate from your couch!

Thank you all for your continued prayers and support!

We Did It!

We LUNGed Forward! All 5Ks!

We were happy when it wasn’t raining when we arrived at the site this morning… and then it started raining right when we got out of our cars. Thankfully, Gwen and Justin had procured a couple of pop-up tents for us to hang out under during the pre-race festivities.

There were a ton of sponsors there, and some food and beverages, but not many of us ventured out from under the tents to check out all of these things. We did make our way to the stage about 45 minutes prior to the race when they had any lung cancer survivors in attendance. Anyone who is living through this disease is a survivor. I think there were about 20 of them who braved the weather (including some thunder and lightning about 10 minutes prior to their time on stage). It was moving to see that there were a couple of other young ones present, but the best was hearing that there were a couple of LONG time survivors there! One lady (whom Gwen already knew) is an 18 year survivor, but one of the survivors that walked across the stage today was something like a 26 or 27-year survivor.

Next up was the “survivor walk” which apparently was also the one-mile walk. This is traditionally led by the survivors. Will wanted to race in this, and there were other members of the Gwen Strong team participating as well. As you may be able to imagine, it is a bit awkward to pass the survivors who are leading this walk, but Will managed anyway, and wound up taking first place. The rest of the Gwen Strong Team had no idea that finishers were approaching the finish line as it was raining and we were under the tent, therefore no one was at the line to greet him. Oops!

Anyway…  the 5K got underway and we had a lovely time running the hills in North HILLS. And then it also rained some more. By the time some of us slower participants were finishing coming up to a finish line that was uphill, mind you, the skies really opened up. And then, once the race was over, so was the rain. Thankfully, the temperature was in the low 70s, so we were not cold!

Gwen and Friend Kristen

Justin and Gwen bringing Callie across the Finish Line

Sister Kristen and I ran most of the time – except for up those North Hills!! I got that first one… but ugh.

Sister Kristen, Jill, Allisen, Gwen

Next up was the kiddie dash. Brooks, Will, Lachlen, Kenlee, and Callie all participated and all ran the whole time!

Will and Brooks

Lachlen in the rear.

Callie and Kenlee

Team Gwen Strong had a strong showing at the medal ceremony. Three of our runners placed in their age groups! And Gwen, being Gwen, finagled her way into a medal. She WAS the first female survivor to cross the finish line, after all… And they really should have a group for that…

Justin getting his bling

Rhonda getting her bling.

Thanks to Gwen’s amazing support system and the graciousness of so many of you, her team came in third place in the fundraising team category. Gwen scored a nice prize for that! But truly, the Lung Cancer Initiative of NC is the winner – they raised over $150,000 – much of which goes toward lung cancer research!

It’s Almost Time to LUNGe Forward!

We are just a few weeks away from the Lung Cancer Initiative of NC’s LUNGe Forward 5K. There’s still time to join us for the run or from the comfort of your own home via a donation to the team: Gwen Strong. Thank you for supporting the advancement of lung cancer research!

Gwen is moving right along with her training for the 5K… She did 3.1 miles today! She put on the caveat that it was on a treadmill, so that’s not as good or something, but whatever. She ran 3.1 indoor miles!

Tonight, Gwen and I were discussing how fortunate we are to live in the Research Triangle area. She has been reading blogs of other people her age with lung cancer and is also a member of a Facebook group for ROS-1 mutation folks. One of the members of the Facebook group just passed away. He was 33 and had been diagnosed 3 years ago, but didn’t know he had ROS-1 until 2 years ago. Another site Gwen was reading contained discussion amongst people about whether or not their oncologists had done the testing for the mutations. Gwen said it was evident that some of these doctors were only familiar with the 2 main ones, so when those came back negative, no further testing was done. It really puts things into perspective and reminds us how awesome it is to be connected to doctors at Duke and specifically Dr G who leads up some lung cancer research. I have a hard time fathoming doctors not being aware that there are more than just 2 mutations out there!

Switching gears for a moment, it had been awhile since I’d seen Gwen, and they stopped by today. I was taken aback by the fullness/thickness of her hair! And I happened to make a comment about her hair that people may think is not the nicest, but Gwen and Justin both laughed because the comment I made = the comments Gwen has made about her hair, too. Of course. For those of you who don’t know the two of us, we oft say the same things. Sometimes it is creepy. So anyway, here is her hair. What comment would you make?

We asked the kids, thinking surely it must be obvious. Clearly it is not to them.

The kids said she looked like: Elvis, she has mountains on the back, ocean waves in the back, a boy, etc.

No kids, she has a hair helmet, duh.

Justin tells me that recently conversations at their place have gone something like this:

Gwen: “Callie, go get your helmet on so we can go for a bike ride. I already have mine on!”

Or

Justin: “It’s kinda chilly out. Do you think I need my hat on for my run this morning?”

Gwen: “Well, I’ve got mine on…”

It’s just so much thicker than it was before! I tried, without success, to get her to go for a bowl cut – I mean, what better way to show off the thickness?

Another One of Those Non-Update Updates

Hello People! It has been about a month since our last post. I know our awesome followers get a little anxious when I haven’t posted in awhile – and it is because you are all so caring! For that we thank you a ton. Your support means more than we can express in words.

With that said, we really have nothing much to report. Gwen is doing well. School is in full swing – we are coming to the end of week 3. Gwen thinks I have been avoiding and/or ignoring her when really things have been overly busy. But see, Gwen? I’m thinking of you right now when I should be sleeping!

Gwen is continuing to train for the Lung Cancer Initiative’s LUNGe Forward 5K and is up to 2 consecutive miles! Her non-running sister is also attempting to train and is also up to 2 consecutive miles as long as it is not too sunny and it is completely flat and the temperature outside is a perfect 75 degrees else she completely overheats and turns purple, but that is neither here nor there. The Lung Cancer Initiative’s LUNGe Forward 5K is on November 7th in Raleigh. You, too, can run with us, or you can be with us in spirit. Please consider joining her team or donating via the link. Some of us haven’t registered yet either even though we should have… Justin, Allisen, Kevin…

In other news, we will be celebrating the life of this lady this weekend:

It is thanks to her that we are able to spend our summers in Lake George. We are thankful she is now with Grandpa, where she has wanted to be for a long time as she has missed him greatly! Incidentally, Grandpa died from Lung Cancer in 1997. Here they are looking so adorable, and this is how I envision they are once again:

And now, please enjoy this lovely photo I took of Gwen when she wasn’t expecting it:

And then this one she was expecting, obviously:

Now, the purpose of my photo shoot, one so you guys could see how much her hair has grown – look how wavy it is! I am still disappointed it didn’t grow in a different color:

And finally, one of Callie, just because.

Mid-Summer Check In

Hello friends! It has been nearly a month since our last post! A lot of our Northern readers have gotten a chance to see Gwen recently, but perhaps some of our Southern friends are feeling out of the loop!

A while back, I was thinking, “Hey, it’s summertime…Gwen and I will be at the lake together…I will be so much more well informed and capable of updating the public…and I will be able to have so many more pictures! Lots and lots of them!” Yeah, so that hasn’t really happened. We are here together at the lake. I can inform you of that. Any pictures shown are from other people.

Gwen has been training for the November 5K. If you haven’t seen it on her Facebook page, you can get more info here: Lunge Forward 5K

She is up to about 1.3 miles! She is also training for our Lake George NanoMan, but I have yet to see her train for the swim…this doesn’t count:

The Orilios were able to travel to our hometown (Cazenovia) to attend our cousin’s high school graduation. They grow up so fast.

Sister Kristen, cousin Rachel, cousin Tara, Gwen (look at all that hair!)

Justin, Gwen, and Callie went down to Utica this past weekend so Justin could run in the Boilermaker road race. A whole slew of folks wore Orilio sweat bands on their wrists in support of Gwen.

 

 

 

 

 

 

 

 

And Justin and his brother were featured because they are so amazing on the Boilermaker Facebook page and also seen in a commercial for the race.

And then came Monday. Maybe it was because it was a Monday or maybe it was because it was the 13th… But Gwen awoke early in the morning not feeling well. She finally got out of bed around 3:40 a.m. (I know this was the time because this was when Lachlen also decided he was done sleeping for the night – perhaps as a sign of solidarity).

Gwen was having a lot of pain traveling from the top of her stomach to her throat and some nausea. Several hours later, she was in more pain and was starting to get sick, so Justin took her to the nearest medical center as soon as it opened. They gave her a shot for the nausea and some meds for heartburn and sent her on her way. Gwen had a call in to Dr. G. in Raleigh and was feeling worse instead of better.

Dr. G. sent her to the ER as a precaution. She wanted scans and blood work done. The result was esophagitis. The ER doctor would not speculate the cause.

Not to worry, friends. I have researched and discussed with the family and we are here to do the speculatin’ for all y’all with the caveat that we are not doctors!

There are many types of esophagitis. We think the type Gwen has is:

DRUG INDUCED ESOPHAGITIS

This can happen if certain medications remain in contact with the lining of the esophagus for an extended period of time thus causing an inflammation of the esophagus. So either the medicine got stuck, or some came back up into the esophagus from her stomach. So, about 16 hours and some morphine later, she was on her way to feeling better!

We just hope Callie looks this happy when she finds out Momma and Dadda are going to be gone for the next several days on a much needed trip!

The 5F

My apologies to our faithful followers! I have been hearing from several of you lately because it has been awhile since the last blog post. There just wasn’t much to report! Gwen was still pretty much dealing with double side effects from chemo and starting Xalkori and was tired. She is still teaching full time and coaching track!

Today, we can update on a few things! Gwen and Justin just had high school spring break.  They went to Disney and spent Easter there with his parents. Our Mom went along, too. I hear there was a parkwide egg hunt for 44 eggs and the Orilios found 3. I’d say that was pretty good!

The trip went well until they were on their way home and wound up about 10 cars back from a single car accident with a fatality. They feel blessed to have been 10 cars back and not closer to what could have been much worse.

Gwen had an appointment yesterday. Things are going well. This was the first appointment since she started the Xalkori, so she took some time to find out how the medicine works.  Basically, we all have cancer cells in our bodies and our immune systems attack those cells.  When you have cancer it is because the cancer cells have gone haywire and our immune system can’t keep up. Xalkori targets those mutant cells and stops them from dividing and growing. It will essentially go after the weakest first and then hopefully go after the more concentrated masses. Somehow there was some miscommunication right after Gwen’s lung surgery and she didn’t get the memo that she still has a mass in her lung that was not removable. I think she was still too doped up on drugs to remember that part… But, she kinda had a lot of other information being thrown at her, like “you have cancer, and it’s not good,” so maybe she just missed it.

Dinner out because it was Friday

This time, when Doc G referenced the chemo, she made it sound like it had done it’s job very well – that is different than the impression we got last month when it seemed like there’d only been a ho-hum response.  She said there was only “a little disease present.” It sounds as though the thinking right now is that they will shrink this lung mass as much as possible, but they will likely radiate it. Doc sounded hopeful that with radiation, they may be able to kill it all and get Gwen into remission. I am not sure of the time line on that.

Gwen goes back in one week for a CT scan to check to see if Xalkori is doing its job, and they will do an MRI of her brain – which will be her first brain check since the fall. She also has a follow-up with the ocular oncologist in a week and a half, so stay tuned!

Finally, today was the Gwen 5F; a thank you brunch for the organizers of the Orilio 5K. The 5Fs were for Gwen’s Favorite Fabulous Foods Fun Feast. There were a lot of foods that one would consider brunch items, and then I guess what made it “not breakfast” was that Gwen wanted delicious treats such as chocolate cherry cake… I wanted to take pictures of the brunch so I could add them to the blog, but alas, I was so busy eating I forgot until most everyone had left which is what happens when one sister who is on lots of medication is in charge of a blog about her sister who is also on drugs. And there were mimosas. 

Again, my apologies to the attendees. You are the reason for the brunch. We can’t thank you enough for everything you did, and continue to do, for Gwen. I show my thanks by forgetting to take your picture. But here’s some shots I did get once I remembered my objective!