It’s Lung Cancer Awareness Month!

I cannot even remember our last update! It has been quite a year for everyone for sure. Like everyone else, we have been hunkered down with Quarantine 2020 and there hadn’t been much need for an update. We were able to spend some time in NY this summer up at the lake – the COVID cases in that area were slim to none, and we pretty much kept to ourselves at the beach. Gwen, Justin, and Callie did a little bit of travelling with their camper on their way north and ultimately rented a campsite for a month near the lake so we could stay physically distant at night and on rainy days. Thankfully, we had wonderful weather this summer!

Lachlen and Callie enjoying the old-school swing set at the campground

Gwen has continued with her routine scans, doctor appointments, and trips to Boston; although she is now driving to Boston instead of flying. One of the scans that Gwen gets is a bone scan. From the very start of this journey, we knew that there were spots on her bones, and Gwen gets a shot every so often to help strengthen her bones to combat the cancer that is hanging out there. Over the past several months, doctors noted that one of the spots on her femur appeared to be growing. Due to the importance of this bone in carrying weight, it was determined that radiating it would be the best course of treatment. About a month ago, Gwen went through 10 daily radiation treatments on this spot. She tolerated the radiation well – only complaining about some pain after sitting for long periods of time which we are doing a lot right now with remote teaching but that is a whole other blog post.

Those lovely black blobs on her bone and in her hip are the cancer

That pretty much brings us up to this past week when she had her next round of scans. Unfortunately, another spot was found on her shoulder. She and Justin are in Boston right now and have met with doctors there about the next course of action. They will meet with Dr. G. here in Raleigh next week to finalize a plan, but as of today, it is looking like IV chemo in addition to the medication she is currently on will be the treatment. This is not what any of us wanted to hear.

For our long-time followers, you may remember that Gwen started on chemo right away, but she never finished that treatment because it was discovered that she had a genetic mutation. Since she never completed this, chemo is still an option for her, but it has always been the goal to seek other medicinal options as much as possible. Gwen REALLY doesn’t want to do this, as you can imagine, as she has been very blessed to have had such a positive response to the other treatment options.

Thank you for keeping her in your prayers as she navigates this new chapter in her fight against this awful disease.

Gwen is (Locally) “Famous!”

If you are in the greater Raleigh viewing area, please set your DVRs to record or tune in to ABC 11 on Sunday, January 19, 2020 to see Gwen on the 5:00 pm news! She and her doctor were interviewed for a story on lung cancer and the advances in treatment options.

If you can’t tune in, you should be able to watch the story here after it airs.

 

Science!

Hello all y’all! Lots of things have been going on over the past several weeks. Gwen is still traveling to and fro due to her participation in the drug trial in Boston. She gets her scans done here in Raleigh and meets with Dr. G. here, too, but goes to Boston to get her meds and have her blood drawn.

After her latest scans, Dr. G. was so excited she called Gwen at home to talk to her about it!

February 2016 – Gwen’s lung “cloud” first appeared.

May 2017 – Gwen’s lung “cloud” has disappeared!

Additionally, of the more than a dozen brain spots (aka “mets”), only 2 are visible in the scans!

Holla! Praise!

Her latest trip to Boston was made a little extra special when she was met at the airport by 2 of her good college friends, Kristen and Rhonda. Her friends accompanied her to the appointment where they took waiting room selfies, and it sounds like they did a bit of shopping, eating, and enjoyed their time together.

Gwen was given permission to go a whopping 9 weeks in between appointments this summer – quite a change from the usual 3. So, if you are keeping track at home, her next scans will be mid-August.

Today, we were able to celebrate Callie’s birthday with Mom and Dad who came back down from NY, Justin’s parents on their way up to NY,  and several family members from VA. (According to Callie, it was the best birthday party ever).

This is Gwen and me with Uncle Kip.

Tonight was the annual NC Lung Cancer Initiative’s survivors event (the past couple of years was a breakfast, this year was an evening affair). Gwen is shown here with other survivors and also placing her handprint on the survivors’ tree.

Thank you all for your continued support, prayers, and well-wishes! They are working! We love you!

Brain News

It’s been a busy week in Gwen Land. She had a spinal tap yesterday and is having some residual lower back pain and headache from that today. I went with her to Duke today so Justin could work (according to the local news, we teachers are absent too much…).

So here’s what we did while we were waiting:

Grading papers like champs…

Anyway, the first appointment at Duke this morning was literally with a Brain Surgeon. We later met with another specialist for a consultation. Being that we were at Duke, we also met with their respective interns. Between all four of those intelligent people, we heard the same thing over and over, “We don’t know what’s in your brain.” I will fight the urge to make jokes here.

Since I was not present at the appointment on Tuesday, I learned some things today. Such as: in August, Gwen’s brain scan had some spots and no one mentioned anything. Apparently, if any of us got our brains scanned right now, we could have spots show up, too. This week, what alarmed the doctors was that there were about a dozen spots and some were in the same exact location as before AND had shown growth. However, if these were indeed cancerous, the expectation would be that they would react to the contrast in the MRI, and they didn’t.

It was the opinion of all four of the people we saw today that Gwen should wait 4-6 weeks, get scanned again, and then reevaluate. Treatment options for “If these are metastases…”  were discussed (biopsy/radiation, etc). Also, the brain fluids from the spinal tap will be tested for everything under the sun to try to explain the spots. They said that the spots could turn out to be nothing…

Meanwhile, in between appointments today, Gwen received a call from Dr. G’s nurse (Duke-Raleigh) who had been in contact with Dr. Shaw in Boston. (Recall, she is a ROS-1 specialist). Dr. Shaw wants to see Gwen in Boston NEXT WEEK. (See previous note about teachers and “multiple absences” and you will understand that this gave Gwen a bit of a momentary panic attack). 

Gwen was able to talk to Dr. G. tonight on the phone to discuss the Duke appointments as well as the idea of going to Boston. Dr. G. and Dr. Shaw DO NOT want to wait 4-6 weeks. According to Dr. Shaw, spots in the brain that do not react to contrast is something that she sees frequently with the ROS-1 patients (this is actually a question that Gwen tried to ask the doctors at Duke – could this be a different kind of reaction because of her type of cancer. They didn’t think so, but it seems that Dr. Shaw does, and she’s the ROS-1 expert). Dr. G. REALLY wants to get Gwen up there ASAP – she doesn’t want to take chances with Gwen’s brain. Apparently, Dr. Shaw does think that these spots are concerning.

There is a drug that Dr. Shaw can get Gwen hooked up with. Gwen really doesn’t want to leave Xalkori due to the fact that her body hasn’t resisted it yet (it is still working for her lungs), but this other drug has been shown to break through the blood-brain barrier. This course of treatment would also likely mean multiple trips to Boston.

We left the appointments today thinking we had one game plan, and then within a matter of hours, it was thrown out the window!

Gwen knows that, obviously, her health is the most important thing, but we teachers are a warped breed. Sometimes our first thought isn’t “I have to take care of me,” it’s “Oh, how am I going to be absent that much and make all those sub plans and grade all those papers and how will the kids ever be ready for the State Exam??” It is irrational, exhausting, and very, very stressful.

If you are the praying type, please pray for her to find peace with her chosen course of treatment, which ever that may be, and to find peace with putting her health first! And of course pray for her health and the wisdom of her doctors. 🙂

Thanks, everyone!

Thanksgiving 2016

Gwen had her latest scans yesterday. Much to the surprise of everyone, the scans came back showing no change! Gwen and Dr. Garst were both expecting to see growth in the lung cloud. The doctor said it was quite surprising, actually, that there had not been any change. Gwen had been preparing herself emotionally for a tumor to be forming and for the eventual change in medications. So, this is good news, for now. She will continue the current course of treatment (Xalkori). The rest of the scans looked good.

We were fortunate to spend Thanksgiving with our parents, my in-laws, and Gwen’s in-laws. Lots of good food and great desserts!

Our family has a tradition of going around the table (before we eat), and each person states what they are thankful for this year. Some of our “thankfuls” from the dinner table this afternoon, just to name a few:

• That Gwen had a good appointment
• That Gwen has such a large support system
• Modern medicine
• Turkey (Callie)
• Family
• Teachers

Then we all ate like crazy. Another tradition is to go on a walk in a feeble attempt to make room for more food.

So we walked and then came home to eat some dessert!

We thank all of you for the support and prayers that you have given to Gwen. We hope that you all have had a fabulous Thanksgiving and may God bless all of you!

 

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.

 

 

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.

 

“Out, damn’d spot! out, I say!”

Hey everyone! I was just thinking about the fact there had been no update in awhile because there hasn’t been anything to report. Well, leave it to Gwen to come to the rescue with some good news to report!

You see, we were sitting in church, and Gwen, having a short attention span, started testing her vision (it may or may not have been during a prayer) like so:

She suddenly realized that she wasn’t seeing her spot (the tumor one) any more! The news quickly traveled down the pew, as soon as there was a break in the action, of course. Maybe she’ll be able to see better at night now. We’ll see.

Stay tuned; her next eye appointment is March 22nd.

Until then, we’ll update you later this week after her next body scans with Dr. G!

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!