National Cancer Survivors Day…

…was yesterday. And we missed it. Sorry Gwen! But today, we celebrated by going to a survivors breakfast hosted by the Lung Cancer Initiative of NC. This was the second time Gwen and I attended.

Don’t be jealous of my mad food photography skillz (I’m pretty terrible at this part of blogging). I remembered to take photos AFTER we finished eating…

Just so our lovely readers know, Gwen has a scan coming up on the 17th to check on the status of her lung “cloud,” which I learned today actually has a medical name. Do not ask me what it is because I cannot recall. A woman we met at the breakfast said that June 17th is her luckiest day of the whole year, so it will hopefully be a good day for Gwen.

But you guys, Gwen is nervous. She has been having some wheezing when she lays on her left side and feels like she has some shortness of breath when she is sleeping. Please send good vibes her way and pray for her!

A very close-up photo of Gwen. Hi, Gwen!

(sidebar: Gwen’s doctor is currently at ASCO event which is the American Society of Clinical Oncology held in Chicago. This event is apparently a big deal in the cancer research world. We are hoping she comes back from ASCO with some cool information as we look ahead to a PLAN B for Gwen). 

At the breakfast, we also met the local woman whom had completed a safari in Zambia with her husband when, on the grounds of their hotel, was headbutted and sent 12 feet into the air by a giraffe! (For more on that story, see here). She is a 4-year lung cancer survivor.

The keynote speaker was a 2 year survivor who happened to have had the same surgeon who removed Gwen’s lung tumor (back in January 2015). The speaker has been on and off chemo and his kidneys aren’t going to take much more. He has had parts of his lungs removed and still has a tumor in his lung that they don’t have a plan for as of yet. He spoke to us about the whole “learning you have lung cancer” process. Listening to that part of his story was a bit emotional for me – perhaps because he had the same surgeon telling him the news that Gwen had. It just transported me back to January 2, 2015 in the tiny little room off the main waiting room. Truthfully, I just wanted the keynote speaker to stop talking. I couldn’t make eye contact with Gwen. But as I looked around the room this morning, no one else seemed emotional at all! These people are all such warriors! They are living this daily – it is in their faces 24-7.

Here he is speaking to us. His “speech” is written on an envelope, BTW. Awesome.

Which brings me to his next point. Why are these “survivors” called survivors when they are still battling? They should be called fighters. Gwen and I liked that. Lung Cancer is a constant battle. Those who aren’t “in the know” get the incorrect impression that if you are a survivor, you are cured. There isn’t a cure. These “survivors” are still fighting.

This man’s body is tired, however, his spirit is not. He basically said that the cancer was almost a blessing in his life. It woke him up and got him out of his daily rut. He also quoted some Jimmy V so that was cool. It has given his life a purpose; to go out and bring awareness to this cancer, and that it isn’t about the quantity of his life, but the quality.

Wow. What an awesome outlook.

Gwen and fellow survivors/fighters/warriors. Take in their faces, people!

And I would be remiss if I didn’t mention little Callie’s third birthday which was this past week.

She enjoyed a party with friends and family which included lots of time in a huge bounce house which explains the matted down hair in the cake photo. And the kids weren’t the only ones who had a good time…

I may not be able to take pics of stationary objects like, say, food. But I nailed this one. 

Keep jumping, my friends. And steer clear of rogue giraffes.

 

Things Are a Bit Hazy

Hello everybody! The school year is winding down, and I know quite a few of us are looking forward to summer! We can’t wait to get to the lake. We are beginning to review for final exams down here in the south, so we know the end of the year is upon us (finally), and we’re pretty excited about that.

In other news, Gwen had an appointment with Dr.G, whom some of you may have seen from Gwen’s Facebook post, was rated in the top 10 for doctors in her field. Yay! We really like her.

As you may or may not recall, at the last appointment with Dr. G. there was a cloudiness in Gwen’s lung similar to what one would see with an infection, however she was not ill at the time. Well, at this visit, the “cloudiness” was even more so. Even Gwen could tell it was worse when she first saw the scans. So, it is unclear what it is, but the doctor continually referred to the cloudiness as a malignancy.

At this time, she is at the level of concern to “keep a close eye on it,” but the treatment plan is unchanged. Gwen went home with literature for the next type of medication options, and Dr. G. will be talking with other doctors about possible trials, etc, moving forward.

Gwen is Gwen. She has a positive spirit. It seems that in other cases of Xalkori resistances, there is never a doubt about whether or not a resistance is occurring… (But of course Gwen has to have something bizarre like an unidentifiable cloud that confuses people…) So she isn’t convinced that her body is resisting, yet.

The doctor wanted to see her back in 10 weeks but didn’t want to make her come back home from summering up north, so instead she will see Gwen in one month. I know I feel better about the one month plan!

We’re really talented at jumping- in the summer- with Tess.

Please, as always, keep her in your prayers, and thank you for all the love and support!

Happy birthday to Callie in a couple of weeks!

Last year’s birthday photo!

 

 

The Eyes Have It

Gwen had an eye appointment at “Big” Duke today. Who knew? I didn’t. She called this evening and gave me the update so I could post it on the blog!

It was one of her fastest appointments at the eye doctor’s thus far – in and out within an hour.

For those of you readers who have really good reading comprehension skills, you may recall that Gwen’s eye tumor has had a pocket of fluid beneath it that has been getting smaller (albeit very slowly). This has been something that has been visible every time on the scans; even to the non-doctor folk. Well, the big news today is the fluid is shockingly ALL GONE! Everyone, doctor included, was rather excited about this.

The tumor is still there, and likely will always be there. The width of it is still decreasing. When it was first discovered, it was approximately 740 micro-something units wide. Today it was about 443 micro-something units wide. These are very advanced measurements.

You may also remember that when Gwen started the targeted treatment of the Xalkori pills, she was informed that this treatment was not known to break through the “blood-brain barrier,” which is why any progress that is made on diminishing the size of the tumor in her eye is amazing!

Who knows if the tumor is reacting to the medication or if this is a response to the cancer being inactive in other parts of her body?? Or simply the result of God’s handy work and the multiple prayers of all of her awesome supporters out there?? Thanks to all!

When It Rains, It Pours

You may be asking yourself, “Self, will Allisen please stop with the posts this week? She hasn’t posted in weeks and weeks, and now she won’t shut up!” The updates just keep pouring in, and also we have gotten a whole lot of rain, so literally it has been pouring here. 

Here’s Gwen and Friend Kristen running in the rain, but doesn’t Friend Kristen look jubilant anyway? (And they appear to be running in sync.) Photo cred: Lydia Lea

On Monday, two days post-5K, Gwen had her next round of scans. Today, Veteran’s day, Gwen, Justin, Mom, and I piled in to the doctor’s office and awaited the results. And I mean we really a-waited… for hours. Apparently Veteran’s day is a popular day for oncology visits.

Once again, the news was good! Scans were clear. We looked at side-by-side images from August and November. The technician’s report indicated that there seems to have been some things that had cleared up since August – signs that perhaps Gwen had a touch of pneumonia or bronchitis back in August? She had felt fine, and those spots were obviously not anything that stood out to the doctor or the CT technicians in August – just that things are more clear now.

Gwen talked about a couple of things with the doctor – like “chemo-brain” effect – that happens about once a month or so (which is basically trouble thinking about complex things more than usual) and it is likely that it is a side effect of the medications she is taking. Her MRI indicated that everything with her brain was good. She has had a couple of other minor issues that she will monitor and report if things seem to change, but nothing that is of concern to the doctors at this time.

And in case you were wondering, this is what it looks like when Gwen asks questions:

Don’t you feel like you were there with us?

Gwen got the good news that at this point in her treatment, research indicates that it is fine to only have the Xgeva shot (for her bones) once every THREE months – she was having that one monthly. So, she got it today and is now good to go until February, which is when she will have her next scans as well.

At the end of the appointment, Dr. G ended with a “Merry Christmas! Now I have to go see sick patients; you are not one of them!”

And by the way, today it was sunny all day long!

See how sunny it was? And not a cloud in the sky!

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!

Gearing Up For Summer!

Gwen and Justin finished up their school year yesterday. They had not made any summer plans because they were waiting for the results from this week’s appointments.

Tuesday: Eye appointment with the ocular oncologist. Friend Jayne went with her. Result: the tumor is still present and likely will always be present in some form. The “perimeter” of the tumor is about the same, but the fluid under the tumor has decreased thus decreasing how much the tumor is raised up. In prepping for this blog entry, I asked her the question I figured would be on most of your minds, “How is your vision?” Her response? “20/20.” Not what I meant, Gwen… Answer: She can still see the tumor.

Wednesday: CT scans and a check up with Dr. G. Result: Confusion. In a good way. Her scans look better than last time! Yay! But wait, how are they better than the report from last time of “no cancer present?” Doctor’s visits can be so confusing. Even with the good reports! At any rate, we’ll take it! The scan reader person said there were some signs of inflammation in a couple of spots, which is apparently not unusual when taking Xalkori. The doctor couldn’t even really find said spots in the scan when she looked, so no worries. Summer travel is a go, folks!

In related news, I mentioned in the last blog post that we met a lady who had seen Gwen’s case presented at a conference. Dr. G. told Gwen today that this particular conference was the most exciting conference in terms of lung cancer news/advancements they had ever had! There are more drugs being approved, including now a “third line of defense” drug, meaning, if the body stops responding to Xalkori, a second drug is attempted. Now they have a third for if the second one stops working. This is exciting news! Especially since Gwen is only on drug #1.

Twins! Because I have no other pics for this post…

In unrelated news, I was able to rope Gwen into helping me at Vacation Bible School for the rest of this week. VBS is not something we experienced “up north.” That is not to say it doesn’t exist up there, I just personally had never even heard of it. This is the first time Gwen has helped out. She came and helped with setting up, and today through Friday, she’ll he helping in the kitchen with snack.

Again, no other pics, so enjoy the VBS set.

Will told me yesterday that his favorite part of VBS was recreation and Bible Story. Today, he said he now has three favorite parts: add snack “because Aunt Gwen was there.” Awwwwwwww. So sweet! (He finally cut his hair today to match hers).

Gwen and I have found it kind, but at the same time we have been surprised, that people are concerned that VBS may be too taxing for her. She just finished teaching and coaching all day, every day! Helping with snack is a cakewalk! She’s got this. Gwen has said she is finding herself wanting to help people more because of how many people have helped her. This experience has certainly affected her in many ways.

The Gwen Effect

A couple of things to share this week. The first is an update on all the migraines Gwen was having. For those who don’t know, and I am not sure how much I mentioned about this in any earlier posts, but starting in April 2014, Gwen was having migraines about once a week. She had never had one before. These finally got on her nerves enough that she scheduled her appointment with the neurologist and went for that fateful visit to the eye doctor – you know, the one who found the tumor?

Anyhoo, it was determined that there was no medical reason for these migraines – they were likely genetic. Mom has them occasionally, and her two stunningly gorgeous sisters have also been known to get migraines. They were not related to the cancer. But guess what? Ever since January, when we got the official diagnosis, she has not had a single one. Not. One. And remember, friends, how she had no external signs of lung cancer when this was found? Gwen believes these migraines were certainly her sign from God.

Look! She’s got hair!

Second awesome story to share is one that Gwen shared at church today. She was riding on the track bus when two of the athletes were having a conversation in the row behind her. One of them told the other that she never really believed in God until Gwen got sick and then got better. Now she believes. It’s the Gwen Effect.

She is moved by how her experience has effected others, and we hope that others will continue to be moved by her story!

Please keep spreading the word!

http://www.lungcancerinitiativenc.org

Aunt Gwen

I’ve learned my lesson. People enjoy updates, even if there aren’t really any updates! Gwen is doing well. She is busy getting her Calculus class ready for their exam on Tuesday. The biggest news of all is that her hair is growing back! I have heard her challenge a couple people to a hair growing contest.

Last weekend, Gwen, Callie, and I went to a strawberry festival. It was lovely. Callie got to see some camels (we also find that odd for a strawberry festival), jump in a bounce house, and ride on a pony! And I think there were only 3 small booths of strawberry vendors, which I also found odd, but whatever.

We also celebrated Hannah’s birthday last weekend, and one of the things Hannah wanted to do was test out our zipline. Everyone took a zip, even Mom and Gwen!

Later in the week, Justin, Gwen, and Callie came to one of Will’s baseball games. After the game, Lachlen challenged her to a footrace. Gwen won…kind of. Lachlen changed the finish line to a different location when he saw he was going to lose. She also ran around the playground to go down the slides with Lachlen and Callie.

This was the most display of energy I have seen from her in a  l o n g  time! Afterwards, she did say she was a bit tired… but she was the only grownup running around. We give her permission to be a little tired.

I must say, it has been nice to have Aunt Gwen back.