Shouldn’t we be CELEBRATING (a little at least)?

First things first, this post is dedicated to Dr. Leventakos.  You’ll find out why later.

We’ve always talked about this cancer thing like being on a roller coaster.  Over the first three years there were times of uncertainty, fear, and sadness, but also screams of joy, celebration, and hope for the future.

So why aren’t we celebrating?  Oh, sorry, you’re probably asking “celebrating what??”

Frank had scans on Thursday!  This was actually Frank’s 5th scan since starting his new drug 11 months ago – sorry for the radio silence.  It’s unbelievable really that time has gotten away from us this quickly.  Needless to say, Frank has responded remarkably to the new drug Alectinib.  His last two scans were basically all clear.  All of the spots in the brain have disappeared and it’s now been 30 months since we’ve had a radiology or pathology report that mentioned anything about cancer in Frank’s chest or abdomen.  That’s the type of news that we celebrate, right?!?

Well, yes, of course.  We had dinner with a couple friends on Friday and had you been there, we would have gotten credit for celebrating.  The next morning Frank flew to Chicago to spend the day at a LUNGevity regional Hope Summit visiting his “peeps” in the lung cancer community.  I just spent the weekend doing my thing.  Multiple soccer games, soccer practice, and all of my “mama duties” as I like to call them.  This may seem boring and you may think we should be celebrating in grand fashion, but this is what we want and have wished for.  Normalcy!

The fact is that we’re kind of over it.  When I say that, I don’t want to diminish the miraculous success that our team has achieved with Frank.  We believe in our heart of hearts that if Frank had been diagnosed in 2004 instead of 2014, his situation three years after diagnosis would be significantly more dire.  We would be feverishly fighting this disease and every single scan would be total stress bomb.  But we’ve been blessed with a variant of this disease (ALK Positive) that’s given us the luxury of getting over it.

Getting over it doesn’t mean Frank is cured.  That doesn’t mean Frank will get to stop taking pills every morning and every night.  We will ALWAYS get scans every 3-6 months. I will be stressed, cranky, crazy, and full of anxiety starting about a week before every one.  There is always a chance that the drugs will stop working and that will be followed by severe disappointment, uncertainty, and stress.  With this cancer, we expect to be in treatment of some kind for EVER.

We can wrap our head around that.  It’s a new normal.  We’ll do it.  We are over it.

It’s really kind of wonderful.  To be the beneficiary of the hard work of so many dedicated smart people who didn’t write off lung cancer as “just a smokers disease”, but believed that there was a lot of difference to be made is really surreal.  These people worked for years, investigated, used new technology, passed the baton to others, collaborated, brought game-changing drugs to market, and learned the best way to give them to people like Frank.  They are working as I write this to solve the puzzle, and Frank is living a normal life 3+ years after a Stage IV diagnosis.

We are thrilled to be over it.  We thank THEM for bringing us to this place.

Ah, so at the top we dedicated this to Dr. Leventakos (who I might add is a big one of “THEM” from above).  At our last appointment, we got the polite *knock knock* on the door as we were holding our breath, waiting.  Dr. Leventakos came in and immediately started into a story about a friend of his who Googled him and found this blog.  He had no idea we were blogging, but he DID in fact know that people called him “Eleven Tacos”, so we were relieved that we weren’t the ones who let that one out!  Anyway, he read the blog and wanted to know why we stopped writing.  We didn’t have a good answer.  It doesn’t take long to write these.  Most of you like when we share.

I guess we were just over it…but sharing is caring and we want you to know how much we appreciate all of the support and prayers that you send our way.  Many heaps of love from our family to yours.  We will do our best to keep you current if anything changes, but for the time being, assume no news is good news!

Katijo (and Frank)

IMG_0118
Dr. Leventakos and Frank on Thursday, September 21 after getting another round of great and miraculous news.
Advertisements

Here we go again…

Back by popular demand <insert less-than-enthusiastic “yay.” here>, I present to you the continuation of the story starring the amazing and always positive Frank Sierawski! After 27 months of Frank’s cruise through life feeling healthy – yes, despite a bit of lung cancer Frank has felt well through this whole thing – our last visit to Mayo was a wake-up call and a reminder that lung cancer sucks. You’ll recall that Frank’s targeted therapy Xalkori has done excellent work at keeping those pesky cancer cells at bay and we’ve been living in a world of remission. Remission is now a term I will never use again since we learned some disappointing news. I say ‘disappointing’, but it’s really an annoying and stupid pile of bullshit that we were hoping to avoid stepping in.

Frank’s sneaky cancer found the one vulnerability of this drug and has made a home in his brain. Yes, this sounds very Halloween-esque, but Frank continues to present without symptoms and still tells jokes that only his sisters laugh at.

But the news is startling and it’s taken some time for us to digest. We’ve been procrastinating this communication out of shear exhaustion and not seeming to have enough time to just sit down and focus. Last Monday Frank underwent the gaggle of tests: blood labs, EKG, CT Scan of the chest, abdomen, and pelvis, and an MRI of the brain. Tuesday morning was our second appointment with Frank’s new oncologist, Dr. Leventakos, who is a great replacement for Dr. Pham.

Dr. Leventakos started the appointment by asking how Frank was feeling (great, of course), and then letting us know that it was time to change Frank’s chemotherapy treatment. Immediately I asked why and then took two huge deep breaths preparing myself for whatever was going to be thrown at us. Dr. Leventakos informed us that below the neck Frank was clear of cancer but the MRI of the head was a concern. At this point Frank reached out his hand for my leg to give me a comfort squeeze, but that never really works. I was working hard to just stay in my non-emotional focused zone, avoiding tears, listening intently, not looking at Frank. Just keep breathing.

We always knew that Xalkori, which has been a key element of our miracle for the last two years, left Frank’s brain vulnerable to cancer since it does not cross the blood brain barrier into the central nervous system. For those of you who are asking what the ‘blood brain barrier’ is, here the simple explanation and your anatomy lesson for the day. The brain is a miraculous organ that has its own security system made up of a series of blood vessels that allow essential nutrients into the brain and blocks out harmful substances. Well unfortunately, Xalkori is viewed as harmful by the brain and does not allow it to cross into the brain and fight cancer.

Back in January Frank underwent the Gamma Knife to zap one cancerous spot that made an appearance. This bothersome spot is back and is larger by 2 mm making it 7 mm now, and there are also numerous small metastases bilaterally (in various places) in the brain, but we are thankful that the radiologist who interpreted the MRI noted at the end of the report that Frank’s brain was “otherwise normal”. I mean, we have to chuckle at something.

So, the good news is we have a plan that is fairly well proven. Frank will start on a second generation ALK inhibitor (targeted therapy) called Alectinib. The drug was just approved by the FDA ten months ago and is a smaller molecule that tricks the brain into letting it cross over the blood brain barrier. There have been many positive outcomes in other lung cancer patients with metastasis to the brain and we expect nothing less for Frank! Our first dose should arrive this week after the pharmacy and the insurance company get on the same page. Frank claims he is excited and has really been wanting to try this drug! Sure Frank…always Mr. Positivity.

The day we got this news was a tough day for me, filled with disappointment and just plain annoyance that the cancer is back. Frank is ready to jump to the next step with determination. I often think this is a huge difference between being the patient and the caregiver, but after several hours of processing, Frank’s real feelings came out. He is annoyed and disappointed, and somewhat saddened that this is how it may be forever. We have both made a conscious decision that we will not live in fear, and we will pull through this with all of its ups and downs. We’re still human though and we have our good and bad days.

I ask you to please pray that Frank’s next line of therapy will succeed at fighting off the brain metastases with minimal side effects, and for the continued breakthroughs in lung cancer research that has given us so much hope. In nine weeks we go back to Mayo for another brain scan and I’ll have an update for you on the progress of Frank and his fantastic fight!

Love always,
Katijo and Frank

(Still) All Clear!

Just a quick post here to let you all know that we trekked back to Rochester, MN last week for scans on Monday and Tuesday.  It was our first chance to meet Dr. Leventakos (nickname around the office apparently is “11 tacos”) who is our new “go to” at Mayo Clinic.  Dr. Leventakos took plenty of time with us, first walking through my lab work – continued low neutrophil counts, not unexpected – and then giving us the news that my CT scan from the prior day showed “no new evidence of metastatic disease” in the chest, abdomen or pelvis.  Of course, this is great news!  I wasn’t having any symptoms that would lead us to believe the drug wasn’t working anymore, but all of the research and literature suggests that these TKI-inhibitors will begin to fail over time.  We’re planning to prove them all wrong!

The only other thing that came up at this appointment was my low heart-rate.  At the beginning of the appointment I was clocking in a 50 bpm and that got Dr. Leventakos wondering about my heart rhythm, so he ordered an EKG.  The pulse on the EKG was 43 bpm, but the rhythm looked normal so I was sent on my way.  Bradycardia is common on this drug, and as long as you don’t find me passing out or persistently short of breath, I’m all good.

Next appointment is in late October where we’ll do both a CT scan and a brain MRI…just to make sure there we’ve gotten everything cleaned up from January.  Until then…

Let’s try this again…Frank Update

Time flies when you are having fun! Frank and I drove up last Thursday evening, April 7th, for another checkup at Mayo Clinic.  Friday morning was just the normal routine:  blood draw, chest/abdomen/pelvis CT scan, and a brain MRI (the icing on the cake – finding out how well the Gamma Knife radiation from January worked).  As always, the morning started early and was uneventful.  Frank and I both were feeling comfortable if not just a little anxious for the results.  One of the biggest lessons we have learned in the last 21 months (has it been that long?) is that life is no fun if you live in fear!  We completely trust in the Lord’s plan – good or bad – and know that everything will be okay.  Frank mastered this skill a lot faster than I did, but that is not really a surprise.  The choice of whether to live in fear is one we make on a daily basis, and I often have to pray for God to give me the openness and faith to let go of my fear – especially around scan time!

After a painless lab draw (Frank: “that phlebotomist was great!”), a quick CT of Frank’s chest, abdomen, and pelvis (Frank: “the IV just slipped right in!”), we got our first encounter with the Mayo Café.  Let’s just say that Mayo Clinic has directed its resources towards delivering highly specialized care, state of the art treatments, and an unparalleled health care experience…not the café.  The café provided us with time together which was filled with laughter to the point of tears.  We were discussing the Lungevity Hope Summit that Frank and I will be attending in Washington DC in a few weeks.  While walking me through the agenda, Frank got to the “Lung Cancer Café” session scheduled for Saturdayafternoon, and then he just lost it.  The hilarity of the name (I mean, who in their right mind would ever want to go to the Lung Cancer Café?) paired with the disappointment that, yes, we are in fact going to the Lung Cancer Café, pushed us over the edge.  Frank did not choose this cancer diagnosis, but is choosing the right way to fight it and live his life.  Plus I thought I might try and find someone to make lung-shaped sugar cookies to enjoy at the Lung Cancer Café.  Any volunteers?

Next we headed to Frank’s MRI of the brain, which puts me in the most annoying waiting area at Mayo.  I’ll spare you the details…just think “loud talkers” and folks who don’t seem to understand how to operate the ringer volume on their cell phones.  After the MRI, there were two hours to kill before we were scheduled with Dr. Pham to hear the results.  We learned later that Frank was running a fever and had strep throat during all of this, so he was more compelled to nap while we waited instead of getting lunch.

After getting placed in a room, Dr. Pham didn’t keep us waiting long before coming in with the results.  “Every thing looks good!” The CT of the chest, abdomen, and pelvis showed nothing new, and MRI of the brain was clear!  No cancer…remission!  Dr. Pham has never used the term ‘remission’ with us before, just ‘no evidence of disease’.  I prefer remission.  To me that means it is all gone – big, small, and microscopic.  To add to this ecstatically exciting news, Dr. Pham told us that he sees Frank in remission “for a long time.”  If anything shows up down the road we’ll just zap it or cut it out.  Sounds simple, right?  Always “going for a cure” with this guy!

Dr. Pham shared some study results with us about the medication Xalkori that Frank takes twice a day.  Seventy percent of patients who take Xalkori longer than a year experience a recurrence of lung cancer due to the cancer cells developing resistance to the drug.  Fortunately there are two additional drugs that are FDA approved in our arsenal.  However, Frank has now been taking Xalkori for a year and a half and it is still working!  Frank is also one of the few that have had a surgery to remove the primary tumor.  There are no studies to reference that show if this combination of drugs and surgery has better outcomes, but we wouldn’t change any of the decisions that we have made regarding his treatment.

Dr. Pham also shared the news that he will be moving on in his career to run a lung cancer research lab in Portland.  We are sad to have to say good bye to this young, highly motivated, genius oncologist that we owe so much to, but we can’t argue with research.  It’s the work of smart people like Dr. Pham that pushed Xalkori through FDA approval in 2011, now keeping Frank cancer free.  If not for Dr. Pham and the team at Mayo, this last 21 months of our lives could be so different.  Frank going from stage four lung cancer to remission is the cure and happy ending we all wanted.  So I hope that this is the last of my cancer update emails.  For now, we’ll call it the end!

As always we thank you all for your support and prayers!  Please continue to keep Frank in your prayers so he can have many, many years cancer free!

Our love and thanks,

Katijo, Frank, and the boys

We knew it wouldn’t be THAT easy…

If you have not paid your annual dues for the year of 2016, the deadline is January 31st.  This also happens to be the date we expect Frank to reach his insurance deductible for the year.  I know he is an over achiever in many areas of his life.  The first of course was marrying me, followed by his extraordinary and crafty buying and selling skills, and finally, Frank has been an exceptional lung cancer patient and survivor.

You may be wondering how Frank will quickly gain all the benefits of his insurance by the end of January…well here you go…

Eight months to the day after Frank’s surgery to remove part of his left lung, we drove back to Rochester for a routine brain MRI, CT of the chest, abdomen, and pelvis, blood draw, and the closer with Dr. Pham, the oncologist.  The rainy, slushy, then snowy drive may have been a precursor to what we would find at Mayo.  I want to state right now that I had a small intuition that this appointment was going to provide some challenges.  We got there safely though with eight hours to rest before his first appointment.

The scans and blood-work went as scheduled with a nice hour break for lunch before meeting with Dr. Pham.  He promptly came in the room and inquired about our morning before giving us the results of the scans.  Dr. Pham began by informing us that everything below the neck showed no evidence of disease.  Yay!  If it was all good why did he not say it all looked great?  What about the MRI?  This was confirming my feeling of uneasiness.  Then the blow was delivered. . . a small, 4 mm, lesion is on Frank’s right frontal lobe of the brain.  Remember that metastasis to the brain is common in lung cancer, which is why Frank has had a total of four brain MRIs since his diagnosis in June of 2014.  The initial, base line MRI showed Frank’s fantastically smart and healthy brain, nothing noted.  The second scan roughly six months later was also unremarkable.  Scan number three that was performed right before May 8th’s surgery revealed a very small (2-3mm) spot that was noted, but did not cause alarm yet and needed to be watched.  Good thing it was insignificant and didn’t become a reason to halt Frank’s surgery!  But this most recent scan showed enough growth in that 8 month interval that we’re going to take some action.

IMG_6918
Here’s the last three scans, with the most recent one all the way on the left.  Look for that little red circle around the spot.  Not big at 4mm, definitely glad we’re catching this early!

Our best guess regarding this spot is that it is metastasis from the original lung cancer that has been there since the beginning, but was too small to be detected by the first two scans.  It is slow growing since it took 18 months before it really became a concern.  This lesion is not scary to me, but really annoying and angering.  I really want one year of nothing but boring checkups with no significant changes.  I was even going to ask Dr. Pham when the scans could be spaced out longer than three months…but that will have to wait.

On January 20th we meet with a neurosurgeon, Dr. Pollock, who will discuss treating the lesion with Gamma Knife Radiation.  This is a noninvasive procedure that uses 192 single beams of radiation that meet with intensity at one spot.  The individual beams of radiation are not harmful to the healthy brain tissue that they pass through, but when they all converge on the targeted spot they are very effective at eradicating the diseased brain tissue.  This treatment has very few significant risks, a short recovery time, and is extremely effective with one treatment.  We will learn more about Gamma Knife Radiation in 10 days when we go back to see Dr. Pollock.

As always your prayers are welcome.

Katijo

Stage IV in Remission!

Update sent 6/12/2015:

The answer we have been praying for over the last 363 days! What a great way to celebrate Frank’s upcoming one year “cancerversary” and upcoming 36th birthday! Yes, I am using a lot of exclamation points in this letter and my editor Frank will want me to back off a bit on them, but that won’t happen because I am excited, happy, thankful…!!!!!!!

Regarding “Stage IV in Remission”, Frank, the thoughtful realist points out that this new label is a bit of an oxymoron. “Stage IV” implies a life long battle with cancer and no cure. “Remission” over the long term opens the door to the possibility of being cured! My response to all those deep thoughts is…”Who cares? You’re a survivor and don’t have cancer anymore!”

***Here is a short recap of the last 5 weeks since surgery:

Since Frank’s left lower lung was removed, the only evidence of that incredibly long day in surgery are the three incisions that are 90% of the way healed. Frank handled his recovery from surgery with tolerance and patience. He was diligent with his medications, writing down all the times and doses. For the most part he was good at staying put and relaxing but when he felt like he needed to help around the house, I let him fold laundry. He quickly learned not to tell me that he felt bad for not helping around the house. We all loved having him home, and missed him when he returned back to work just 4 weeks after his surgery.

Today in Rochester Frank was scheduled for a follow up appointment with both Dr. Pham, the oncologist, and Dr. Wigle, the thoracic surgeon. Frank and I expected nothing monumental out of this appointment. We expected to learn the next plan of action since his recovery was uneventful. Like always we spoke with Dr. Pham first. He started with the standard surgical follow-up questions before I got to ask my question. “If Frank is free of disease, as you say there is no evidence of disease, then is he in remission even though he is stage IV?” His answer is what we have all wanted from the beginning, YES!!!!! That is monumental!

Frank will continue to be on Xalkori forever or until there is a reoccurrence of disease – something we hope never to deal with. The science is moving faster than ever with new targeted therapies and immunotherapy’s in the pipeline, so we are both fearless at this point. Frank will have CT scans every 3 months to keep a close eye on any sneaky cells that may pop up.

I have to give Dr. Wigle the award for the best reaction to Frank’s state. He walked into the room and said “You look great!” with a huge smile and proceeded to say “this is going to be easy”. The only thing ordered was a chest x-ray just to confirm that nothing was flying under the radar without Frank noticing.

For now, I thank you all more than ever for helping to deliver this miracle through your prayers and support to Frank and our family. I am signing off as this is our happily ever after!

Katijo and Frank

Tumor Free – Can this really be??

Some awesome news! We received the pathology results this week, and while they took out a lot of scar tissue that was previously cancerous, they did find a small amount of active cancer that the drug (Crizotinib) hadn’t penetrated yet. I call those the “sleeper cells” and I’m happy to have them out! The margins were all very clean, and my oncologist at Mayo is describing me as “tumor free”(!).

We’ll continue to do scans every 3 months and stay on the Crizotinib for the foreseeable future to make sure we stay this way, but we’re very excited about this news and can’t thank you all enough for the prayers and support during this wild time.

Now let’s do the happy dance!!