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.

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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!

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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.

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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.

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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.

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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…

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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.

 

Latest Scan Results

Sorry I forgot to update after the scans… My bad. Chest and brain scans (we’re told) are good. We like to joke that her brain function has never been that awesome… Her pelvis was also screened. Her pancreas, liver, and such are also good.

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The left lung did have a “cloud” present. This, and a low white blood cell count seemed to be indicative of her getting over a virus. But Gwen has not been sick, so this is a bit confusing. The doctor is not concerned, but this has us looking forward to the next scans in three months so we can compare!

Gwen was asked if she’d be willing to donate blood to researchers looking for a way to do a blood test for the ROS-1 mutation. She said, “Of course!”

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This winter season of people getting sick and having perpetual coughs has also made Gwen ask people if they’ve been screened for Lung Cancer. So, remember, if that cough persists long after that cold is gone, perhaps it is time for a screening!

 

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. 

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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:

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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!

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

Summertime Blues (sort of)

Hello again, friends! We are back in NC – Gwen and Justin start school on Friday (hence we are feeling blue). I had every intention to update once more before our summer’s end but, alas, I did not. So, quickly, I’ll update you on a couple fun things that would have been in said post.

  1. They cruised. Gwen was allowed on the ship despite being in the ER two days prior (phew). They had fun. Gwen gambled $20 over 8 days and won $300…On slot machines. There was some parasailing, ziplining, beaching, quizzing, dining… Callie survived and so did her caregivers. All 8 of them.

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Zip line on cruise excursion
Zip line on cruise excursion

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2. Gwen had birthday funtivities. As always. For a week. There were ice cream outings, mini golf, boativities, waterfall hikes, etc. Everyone loved it and no one was upset ever because it was Gwensday.

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3. Justin also had a birthday. Will was really excited about it…

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/post-that-never-was.

Now for the really fun part! After getting back into town Saturday, Gwen spent Monday, Tuesday (Justinsday), and Wednesday at various doctor’s appointments getting scans and results of scans and whatnot.

Monday: Scan day – CT scan, brain scan, bone scan… Basically radioactive day.

Tuesday: Met with ocular oncologist (Dr. M) to check on the eye mass. Good news: it is continuing to shrink! Also, Gwen’s vision is only bothered by it when she blinks and is looking for it. She has trouble seeing at night, however.

Wednesday: Met with Dr. G. to go over all the other scans. Gwen had never had a bone scan before. The main concern from the start was with the lung. Anything else was secondary, so now that the lung stuff is under control, I guess they decided it was a good time to scan her bones, but this made Gwen the most nervous because she wasn’t sure what might be found in other places.

Results? CT scan of the bones show no change in the spots originally identified on hip and spine, however, on the bone scan these spots did not light up as they would if they were cancerous. Therefore, it is believed that there is not a correlation between these spots and cancer, however they cannot be 100% positive about that. At any rate, this was rather good news!

Now onto the lungs. Once again, we are told the Gwen’s lungs look EVEN BETTER than last time! “But wait, how can this be?” you ask cautiously. “Weren’t they clear last time?” Why yes, friends, they were…

After hearing this twice now, Gwen did ask for an explanation. The doctor explained that there’s this little nodule that keeps shrinking. If someone unfamiliar with Gwen’s case were to look at her scans from last time, they would likely not even notice said nodule. If they saw her scans from this week, they wouldn’t notice the nodule at all. Her lungs look like a healthy person’s lungs! The doctor continues to be so excited every time she meets with Gwen. Part of that is the crazy awesome response to the medication, and part is the fact that she doesn’t have patients with this mutation, so I am sure she enjoys the learning aspect of Gwen’s case.

Gwen also reported that the brain scan “showed nothing.” (That one was too easy. I let it go).

At this appointment, Gwen also got her bone strengthening shot and a pneumonia vaccination. Someone told me, repeatedly, the pneumonia one hurts later on. A lot. The vaccine lasts 10 years! Hopefully the pain doesn’t.

So, overall, another excellent report! Nothing has metastasized to places previously unchecked. Lungs look like those of a person without cancer. Hence, the next check up will be in THREE months instead of the normal two!

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In the meantime, please continue to send up prayers of thanksgiving for the healing that has taken place, the advances in science that have allowed this to happen, and the awesome doctors that have been placed in Gwen’s path, and please pray that she will continue to tolerate this course of treatment.

Thank you to all of you who have been following along and asking about her and praying for her! It is working!!

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:

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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!)
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.

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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.

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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!

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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...
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.
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.

She’s a Survivor…

…she’s not gonna give up, she’s not gonna stop, keep on surviving! In this update, we will discuss: the observed increase in Gwen’s activity level, our attendance at the Lung Cancer Survivor’s Breakfast in honor of cancer survivor’s day, which was yesterday, and what’s coming next week. Can you hardly wait?

Item Number One: Callie’s Second Birthday Party

I know that this lovely party would not have been the huge success it was if not for the help of Justin’s parents, Don and Jeanne (I think this may be their first blog shout out – hey guys!). The party was a huge success. The decorations were fabulous, 20150530_155123 the two (2) cakes were amazingly decorated, 20150530_173844 there were funtivities, 20150530_164243 20150530_180612

Justin drew this pirate. Gwen painted it. So talented.
Justin drew this pirate. Gwen painted it. So talented.

20150530_180531 and thanks to Wishes and Wands, there was a guest appearance by a pirate! 20150530_171800 This company is the same one that donated characters the day of the 5K. Callie was all about partying. We have some nice video of her “maintaining the height of the roof” (this is like “raising the roof” but Callie style). 20150530_192644 For me, the best time was AFTER the party was essentially over. Callie had received a ball from who will likely be her favorite aunt, Hannah. I admit this. Callie and I will one day be cool with each other, but it will likely only happen when she is a teenager. Kari and Brooks can relate to this. They also seem to have the same indifference toward me. They will come around one day. Oh yes, they will come around. Anyway, Justin, Kevin, and Will started hitting the ball back and forth to each other in the lawn. Gwen joined in. It was kind of like volleyball, but with no rules. Well, there were rules but they were totally bogus and ever changing. I was the “net.” The game became called “SPORTS!” It was ludicrous, but funny. The point is this: Gwen was playing and being silly and having fun! 20150530_202114 It was awesome to see her like this – this is the Gwen we know and love. After about 30ish minutes of playing SPORTS however, she crashed hard. But she’d had a really long day! She really needed to crash.

Item Number Two: Lung Cancer Survivor’s Breakfast

I had the privilege of being Gwen’s “plus one” at this event sponsored by the Lung Cancer Initiative of North Carolina. I have mentioned these folks on the blog before. We had a lovely breakfast in a conference room at the Marriott. The ladies that run the organization stood up and explained how they raise money and where the money goes and their upcoming fundraising events – which are all free for survivors. We learned that the definition of a cancer survivor is pretty broad, actually. Anyone who is alive from the time of diagnosis on is considered a survivor. Any caretaker of someone with cancer is also considered a survivor. Next, the survivors were given the opportunity to share their story, starting with one of the women who helps run the Lung Cancer Initiative. She was diagnosed nearly 9 years ago! Some take-aways besides the “swag bag” Gwen and I had were:

  • Gwen was definitely the youngest one present.
  • She was also the only one with a diagnosed mutation.
  • 3/10 survivors there also had breast cancer – something to think about… keep up your check ups!
  • Everyone who worked for the Lung Cancer Initiative wanted to meet Gwen! They had heard about her. I have been telling people that she is something of a local celebrity in the lung cancer circuit.
  • One of the ladies said she saw a presentation about mutation testing, and she could tell that the case presented was Gwen’s (her name was obviously not revealed, but this is really that unique).
They're Survivors!
They’re Survivors!

I think it was a good experience to meet others – Gwen asked me when there was going to be a Dermatomyositis survivors breakfast – good question! I think it would be a nice experience for me to meet others like me, too, especially if we are well fed whilst meeting.

Item Number Three: Next Steps

Will informed me that I need to cut his hair to the same length as Aunt Gwen’s because they are going to have a hair growing contest. Hers is already longer than Justin’s now. See? 20150530_192844 She even had pirate-handkerchief-hathead at the birthday party! Gwen has an eye appointment and has her next round of scans next week. Please continue to pray for her and for things to still be lookin’ good! I will update again after those appointments.

Whachyou Talkin’ ’bout, Dr G?

Today was “Scan Results Day.” We were all a bit anxious going into the appointment. Following last week’s positive eye results, I think we were all hopeful for good news but rather nervous about being hopeful for fear of having those hopes dashed.

Mom and Gwen fixing other people's puzzle mistakes. C'mon people!
Mom and Gwen fixing other people’s puzzle mistakes. C’mon people!

Gwen’s guidance counselor, Helen-who’s-name-is-not-really-Helen, came in and said the scans looked good! Ok, last time we heard this sort of news, we weren’t impressed and we switched treatments, so I was still skeptical… But through Helen’s questions, I did find out that Gwen is feeling better now that chemo is out of her system – less tired than before but still tired, especially by the end of the week. But as Gwen said, she’s “really good at sleeping.”

About 1.5 hours after the appointment start time, we finally saw Dr. G. I don’t even know what to write… I think pictures will do the talking here.

20150420_17293520150420_173019What. Gwen, our unique patient, has proven unique in the most important of ways. She has had a “remarkable response” to the Xalkori. She has little to NO signs of cancer in the lungs. WHAT??? Even the doctor was surprised. Remember that mass they thought would need radiating? Gone. WHAT? Doc G said Gwen was a “miracle case.”

rəˈmiSH(ə)n

a diminution of the seriousness or intensity of disease or pain; a temporary recovery.

Yes, folks, Gwendo is officially in remission. We are hesitant. We were hopeful and nervous. We still are. Can this be happening??

Left is today, right is January. See a doctor for interpretation. It's good. In Dr G we trust!
Left is today, right is January. See a doctor for interpretation. It’s good. In Dr G we trust!

She will continue taking Xalkori until her body resists it. She will get scans every 2 months. She will continue to get a wicked expensive bone shot once a month. We are going to keep praying that she is unique and will tolerate this drug as long as possible!

Thank you to all who keep her in your prayers! They are working, and we cannot thank God, nor you all, enough!

Eye Check

So I was wrong in my last post… Gwen’s eye appointment was today, not next week. Oops. Anyway… here is an update from my guest blogger, Mom who just e-mailed us and I literally copied and pasted the e-mail here.

Gwen had a check up with Dr. M today.  He said, “I couldn’t be more pleased.” Then he added, “I will be happy when it all goes away.” The mass has shrunk considerably since March (from 750 microns in thickness to 530). The mass has a signature to it that indicates inactivity on one side. Dr. M is happy with the current treatment plan, so he did not suggest the cold laser treatment at this time. He will just continue monitoring the eye mass. Gwen’s next appointment with him will be May 8th. He left saying, “This is good news!”

Gwen’s scans of her chest and abdomen, and her MRI of the brain happen this Sat. with a follow up with Dr. G on Monday. Here’s praying for more good news!

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!

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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!

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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
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!

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