Happy Anniversary

Five years ago today Liz was diagnosed with advanced stage breast cancer, with a single-digit percentage chance of making it to see 2018. And yet...she is here, she is strong, the continued treatments keep working, and our family couldn't be more grateful. It doesn't seem weird to us to celebrate one of the worst days of our lives, since every year of her journey through cancer is a blessing and miracle for us all.

HAPPY ANNIVERSARY to my beautiful bride! Keep punching cancer in the face.

Scanorama

Since last time I posted...we moved to Nashville. Awesome for all of the reasons, and our boys are doing great in their new environment. It is nice to hear an occasional "yes sir!" when I ask them to do something, but those moments don't happen often enough. We loved our summer with reunions and activities in Utah and Idaho, trip to Yellowstone, horrible attempts to reignite my fishing prowess, two Braves games, an extended beach trip to Tybee Island, and lots of quality family time. Business is good, kids are great, and school is off to a smashing start. Pics at bottom of this post. Now let the blogging commence.

Annual scans for long-term cancer survivors can invoke the highest levels of stress and worry, especially when people feel healthy. The "what if" questions always linger in the back of their minds, but when it's scan time, sanity flies out the window while they wait for results, for confirmation, for answers.

Liz has been rocking the every-three-week treatments and still feels fantastic, even with the occasional bouts of exhaustion (although, that could be child or husband related). We decided to name the past week SCANORAMA! I thought it would provide whimsy and magic to an otherwise stressful time. Didn't work. But I'm now committed to the term, so SCANORAMA! it is. Over the past week Liz scheduled:

• Echocardiogram for her heart
• CT scan of chest, abdomen, pelvis
• Bone scan from head to toe
• Mammogram
• Ultrasound

She also has been building her strength and working out more, so she treated herself during SCANORAMA! to an extra X-ray on her foot when she messed up a tendon last week. Side note: she will kick you in the face with her sweet Stormtrooper boot. 1 scan down, 5 more to find out about.

So five scans left and then...we waited. The oncologist said she wouldn't call in advance, which wouldn't mean it was good, or bad, or anything -- it's just not her process. Vast difference from good ol' Dr. Hantel in Chicagoland who called the evening after each scan was completed. One of the radiologists let it slip that the mammogram looked good so they didn't need to do an ultrasound, but only after dramatically running out of the room to chat with her colleague about the results (such things cause a bit of anxiety in cancer patients). 3 down, 3 to go.

It's one thing to feel well, but it's a whole other thing to know that someone knows whether or not you are well. We arrived this morning at the cancer center for the doctor visit prior to Liz's scheduled treatments. Liz and I both acted like we weren't nervous. We're not great pretenders, given our stress levels and lack of sleep over the past few nights.

The doctor came in the room. After some friendly and awkward chit chat (while we screamed in our heads "JUST SAY IT SAY IT SAY IT!!!"), we reviewed the remaining scan results:

• Echocardiogram was perfect
• CT scan was as good as anyone would hope for
• Bone scan was superb

To quote the oncologist: "You are doing spectacularly well. Really wonderful results. You're a remarkable patient."

Whew. So on we go.

The paradox in knowing how well Liz's doing is also knowing that there are so many others who aren't doing well. The doc said that although she has seen many long-term HER2+ advanced stage cancer patients, Liz is by far doing better than any of her other patients. Ever. We cheer for Liz's success! But we cheer quietly as we sit here, waiting for the medications to pump into her chest port, surrounded by others who are traveling through their own cancer journeys.

We are blessed, and grateful. Now I really want to go eat some celebratory carbs.

            

Just a life altering speed bump

We got a voicemail: "Hey guys, Dr. Hantel here. I got the pathology report back and it's all just pre-cancerous stuff, just DCIS, so that's all good news! No sign of the invasive breast cancer any place so all the results are what we were hoping for. I'm actually going to present her case at the breast conference."

Pro: Liz kicked cancer's neck and karate chopped its face. AGAIN! The pathology results really are good news.

Con: As a well-intended doctor mentioned, this is "just a speed bump" in her treatment plan to keep cancer at bay.

Yeah, it's a speed bump, but it's a life-altering one.

We had Liz's first follow up appointment with the plastic surgeon 2 days ago. You'll be pleased to know that it was ironically "Breast Reconstruction Awareness Day."

Consider us well aware.

Celebrate BRA Day!

Dr. Pavone removed one of her two drains (if you don't know what I'm talking about, either Google it, or don't — just know that they're helpful but way uncool). Everything looks good, he was pleased with the surgery. Ouch.

Yesterday she visited Joe Dr. Montana for his post op visit. He giddily explained that the cancer was confirmed as DCIS, which is a non-invasive, localized breast cancer. That's the kind that either requires a lumpectomy with radiation, or a mastectomy to treat. So we're validated in this major surgery decision, although it doesn't make Liz feel much better. He also said that the breast tissue was confirmed to include a lot of pre-cancerous cells, and the tests show that they got everything. Rousing success. No wonder he's so happy. We're still working on the happy part.

Now we're at Liz's "normal" infusion treatments at the local cancer center. Dr. Hantel said that the entire tumor board/conference talked about Liz's case again. Further confirmation that no one has seen a case like this, where a primary cancer is fully under control and a different one appears and can be fully treated through surgery. He also said that the lymph node that was removed had no invasive cancer present, but that it had some scar tissue, which means that it had been one of the culprits for helping to spread her original cancer throughout the body. That HER2+ cancer is nowhere to be found now, which is the reason why we continue these outings every three weeks.

So yeah, it's a speed bump in the treatment, and this was the right thing to do. The recovery from the surgery has been (and still is) tough, and the reconstruction process over the next couple of months already sounds terrible. How do we do it? We figure out one day at a time. We're buoyed by the prayers and thoughts of others near and far, from the kindest next door neighbor to old friends half a world away. We rely on friends and family to help keep the kids alive and happy.

Grandma's magical distraction skills

And we lean on our understanding of God's eternal plan, grateful for our family and for the blessings we have. Even though #cancersucks.

BATTLE ON!

(I asked Liz if there was anything else she would add. She said "ouch.")

Let's Have Another Round Tonight

"Keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever."

- Jeffrey R. Holland

That beautiful lady in the picture below listened to her "Hamilton" soundtrack yesterday while prepping for surgery. Fitting song in the photo: "Stay Alive."

The mastectomy and reconstruction surgeries went just as expected, or so said the doctors. Last night was rough though: the pain and the pain meds increased her nausea, which increased the pain, and so on. Nurses weren't particularly helpful overnight. Then this morning the doctors took charge with new medicines and finally started getting the pain and nausea under control. She's finally sleeping now.

I'm keeping busy during the napping moments by managing the business and helping students in the online classes I'm teaching. Both are pleasant distractions from the hospital drama.

Unfortunately, we'll be here one more night. But we're eager to get back home and see Mama's Warriors again soon. So glad to have Grandma with them. And I'm so glad to have found a new series for Netflix binge-watching in the hospital room.

Now we get real about recovery. Here's what I posted on Facebook yesterday at 2:52 pm:

"Liz's surgery is done after about 2.5 hours with the doctors. Things went well, no surprises, and she responded well to the anesthesia. I'm going to go see her when she gets back to holding and starts waking up. We won't have any pathology reports for at least a week, and we have the first post-op appointments beginning mid-week next week. Then regular treatment for the first cancer (the one whose can she already kicked) on Thursday of next week. And weekly appointments for a couple of months until the second reconstruction surgery can get scheduled. Woah. Thank you for your prayers, comments, and help with the kids. Note that Liz won't be able to drive for a few weeks, and she won't be able to lift her right arm (she's right-handed!) for a while as she recovers, so be patient with her texting and messages for now. But don't stop talking to her and don't hold back in an effort to protect her. Be present for and with her. And pray that pathology comes back clean so there won't be any new chemo or radiation treatments, just focusing on surgery recovery and continuing to punch the original cancer in the face. Go Team Liz. BATTLE ON."

Game Changer

The mastectomy and reconstruction surgery are scheduled for high noon tomorrow. It kind of feels like an old west shootout, watching the clock and waiting for the moment. We'll be at the hospital early in the morning and then she should be back home the following day after an overnight stay. After the cancer has once again been obliterated.

In the meantime: one hour left to eat and drink what she wants before the midnight cutoff! It's chow time.

We took a fulfilling road trip with the boys from Wednesday through Sunday. No Florida and Legoland (thanks for nothing, Hurricane Matthew). But we enjoyed an apple orchard, the Louisville Slugger factory, the U.S. Space and Rocket Center (SPACE CAMP!), and good ol' Nashville.

The day after we got home we told the boys that their mom is going to have surgery. Liz was inspired with how to share the news so that they would understand. She talked about how her current treatments are maintenance to keep the cancer away. And now this surgery is necessary to keep the cancer away as well. We didn't tell them the specifics of the surgery, or even what it's called. We're keeping it simple: mom will have surgery to keep the cancer away, the hospital is where Eli was born (so they'll do a good job!), the boys will have food to eat and rides to/from school, and mom will be home in a couple of days.

It's not fair. It's different than before. It's a game changer: everything will be or seem different after tomorrow. Liz hopes that every morning the lump will disappear and this nightmare will end. No luck yet, but we have one more night to go before the surgery. Here's hoping!

I'm reminded of a scripture story about people who were persecuted and who had terrible burdens placed on them. Their pleas to god didn't remove the struggles and pain. But "the Lord did strengthen them that they could bear up their burdens with ease." The people were strengthened with increased capacity to ease their burdens. I pray that we gain that same enabling power -- heaven knows we can use it.

BATTLE ON.

Battle On

We started this blog in March 2013 to communicate about my health and our life with the boys as I survived cancer. Well, unfortunately it’s time to start it up again. I will be having a mastectomy on October 12^th.

Please keep reading if you want to know more details. If not, well, might as well stop now.

Four weeks ago I found a small lump in my right breast. Two days later my surgeon Joe Montana (really Lou Montana) confirmed what I felt and in the next couple of weeks I had a multitude of tests which confirmed that I do have cancer. Again. Seriously. My other cancer is still in complete remission. I now have DCIS or ductal carcinoma in situ. It’s very early and it has not spread. Because of the location and microcalcifications in and around the mass it’s the recommendation of all of my doctors to do a mastectomy. Gulp.

The process will be two part with the mastectomy on October 12^th and tissue expanders placed at that time. The recovery will be 4-8 weeks with the first four being the most difficult. The second surgery will be reconstruction and it will probably take place in January or February. During the first surgery I will have two lymph nodes tested just to make sure that there is no cancer hiding anywhere else. I have had CT scans, bone scans and ultrasounds that indicate I am in the clear but we don’t want any MORE surprises. All of this has thrown my doctors for a loop as well. Before determining the plan of action my doctors met with the tumor board, approximately 30 medical professionals consisting of oncologists, surgeons, radiologists, nurses and breast care patient advocates. As they discussed my case one thing was clear: they were stumped.  My HER2+ cancer is in complete remission so the treatments I have every 3 weeks are working, but while this is happening another kind of cancer is growing. And it is not affected by my current treatment.

My oncologist said he could not find a case that was similar to mine anywhere. This is not how I wanted to stand out in life. An anomaly. Is this a good thing? The jury is still out on that one. So the tumor board reviewed all the tests and determined a mastectomy was the best bet for total remission round 2.

To say I am overwhelmed would be an understatement. The physical pain of cancer is bad but having been to cancer hell and back, I know it won’t be as bad this time around. The emotional, mental and spiritual pain is much harder. I feel fragile. Uncertain. I know the outcome will be fine, but I am not sure the scars both physical and emotional will be fine. I know it will all work out in the end, but how unscathed will I be? I am not sure.

The main reason for this blog was always to keep others that mean so much to us in the loop about our crazy life. That reason remains as well as another crucial reason: we do this for our boys. We always want them to know that we have done everything we can to fight this awful disease as many times as it shows its ugly face.

We plan on telling our crew the news as it gets closer to the surgery date. Please do not mention anything to them. We plan to go on a little vacation (very spontaneous but oh so needed!) the weekend before surgery and we will tell the boys at that time.

We appreciate any and all prayers as we get ready to fight again.

Battle on!

Liz

Rational Fears

We all have irrational fears. Mine may be a bit less rational than yours, though:

• I'm convinced that the man/kid/woman walking across the overpass will throw a frozen turkey through my windshield.
• I magically turn off street lights with my presence, and I worry that my powers will one day become too strong to control.
• I am certain that my retainer will fall into the toilet. I don't have a retainer.

But some fears are quite rational, especially while constantly thinking about stupid cancer. Worrying every three weeks that this time is when the cancer markers start rising. Scared that the heart scan will find abnormalities. Anxiety that CT scans will show that the cancer has returned.

That's the thing when cancer has become a chronic disease: it can be hard to look past the next scan, the next test, the next appointment. Hard to focus on the future. But it's exactly that long-term view that we need to set goals, plan family events, give us hope. We are fortunate to have each other to lean on, to give our family strength.

An old African proverb says, "If you want to go fast, go alone. If you want to go far, go together."

We have come far.

I am thrilled to announce that Liz's latest scans and blood work once again show no evidence of cancer! Her oncologist, the man of few high fives, unleashed this barrage today: "If we could've said what the best scenario was back when we met — this would be it." This is the same guy who wouldn't offer any words of hope for way too many months. And now... Wow.

Your thoughts and prayers definitely have helped us get through the worst times. We cannot always avoid the trials. It seems that God's greatest blessings come by helping us heal from the trials we face, rather than having us avoid them entirely.

God's promise as recorded in the book of Joshua rings true:

"I will not fail thee, nor forsake thee. … Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."

Today is a day of celebration. We have nothing to fear.

Go Team Liz!

There will always be room for better, but not until there is room for now

Busy summer with trips to see grandparents, lots of fantastic family time, normal frustrations, understandable worries, new job responsibilities, and continued positive news on the cancer front: tests are still showing no signs of cancer, and the treatments keep working! Liz and I celebrated our 15-year anniversary a couple of weeks ago, and we couldn't be more grateful for the journey, even with the problems presented by stupid cancer. It's worth it, and not just because she's hot. Note the bofelfies (both of us selfies) below:



I've obviously been struggling with where to start (again) when it comes to this here blog. Sometimes sharing others' thoughts is easier (and better) than coming up with my own. I read Johnny T's blog post a couple of days ago. It sounds like he is figuring out life in limbo after cancer: treatments worked, he's doing well, but still has to keep thinking about it and testing for it. Sounds familiar.

The author writes that "there will always be room for better, but not until there is room for now." The idea of making room for now has constantly been on my mind since Liz was diagnosed 17 months ago... It's easy (and tempting!) to say "not now" or "maybe later" or "tomorrow" when it comes to sharing experiences and activities, or doing things with the kids. Making room for now is within our control, especially when there are so many things outside of our control. I haven't got the hang of it just yet, but I'm trying: just say "yes".

Go Team Liz.

Reprinted with permission from Johnny T. Original post located at:
http://www.johnnytthatsme.com/top-five-things-learned-cancer/

Top Five Things I Learned from Cancer

August 6, 2014 By Johnny T

I often write about life after cancer, and the things about it that can be a total drag. I do so with reason. The main reason being that people just don’t talk about it enough. It’s easy to read about all these great things that happen when you move on to being a survivor. How the skies are clearer, the sun is brighter, and everything is just oh so wonderful. The truth is that many people find themselves struggling in life after cancer. It can be confusing and taxing on the mind to think everything should be better than before, but still be facing so many struggles. So I write about it often so others know they are not alone in these struggles, and to also seek the advice of those who have been there before me.

But this isn’t all to say that everything in my life after cancer has been a drag. That’s far from the case. There have been many positive things that came out of my experience. Many wonderful things I have learned, the better person I have become in a lot of ways. Cancer didn’t totally ruin me. After all, I’m still here. So to break the cycle a little bit, today I have compiled a list. There are many things to be said about facing your mortality and moving on to a life after cancer and treatment. So today, I bring you the top fie things I learned from cancer.

1) Life goes on - I don’t mean this in the sense that life will go on after cancer. We all know too well that for some, there is no life after cancer. What I mean is, despite that challenges of diagnosis and treatment, around us, life is still going on. This becomes a difficult lesson in acceptance. All around me, for everyone else and including me, life was still moving on at its normal hurried pace. I had to learn to accept this and accept that there was going to be plenty that I would miss. There would be things I wanted to do, my plans, that simply could not be. But I couldn’t expect life to stop for me, or for anyone else. The kids still grew, the seasons still changed, I still got just a little bit older. I had to roll with it the best I could, disabilities and abilities both. And just like life, I had to keep going on.

2) Some things just aren’t meant to be understood - In a brief recent exchange on Twitter, I was talking with a girl who has also gone on to life after cancer. Her initial pondering was this:

My initial response was that I had been wondering the same thing for going on two years. After then saying that she just doesn’t get it, I replied “I’ve come to learn that some things in life weren’t meant to be understood. They just are, as are we.” There is no universal explanation on life. We are just here. While science can research a lot of what happens in life, and religion can try to explain how life came to be, the simple fact still remains: some things just aren’t meant to be understood. To use cancer as an example, we can understand how cancer behaves, and how to eradicate it from the body, but we will never understand why it exists in the first place. Science will tell you one thing, religion still another. Just like death, or sorrow, or unexpected tragedy, we aren’t meant to understand anything. Somethings just are, and it’s another lesson in acceptance. Wasting too much time trying to figure things out will only drive you further away from life itself.

3) It could always be better - This seems a little bit odd, but I promise it’s true. The normal saying to here is “It could always be worse” and that would also be true. But that’s something I learned early on in life, and was only reaffirmed when I received my diagnosis. What I didn’t realize was how the reality of the phrase “it could always be better” would manifest itself. Long before my diagnosis, I wished things were better for myself and my family. Better job, better place to live, better financial stability, better car. Then I was hit with the news of a cancer diagnosis. And I found myself wishing to have better health, better strength, better resolve, better care, better everything at that point. Since then, I have wished for a better functioning body, better days than some of the ones I still have. No matter where we are in life, things can always be better. What’s the lesson in that? Learning how to accept how things are, and always working for the better. There will always be room for better, but not until there is room for now.

4) There is no self in support - It’s hard to do a lot of things on your own. Living with and after cancer is the same way. For the longest duration of all of this, I tried to carry on with little support. I tried to look in myself for strength and for comfort and for understanding. I tried to heal my own wounds and my own feelings. The end result? I failed miserably. I continued on a downward journey instead of picking myself back up. There is no self in support. In the weeks, months, and almost 2 years following my diagnosis, I have slowly learned how to lean on the support of others. Sometimes it’s not easy, but it’s just necessary. Now I have a great network of support that I can call on at any time. Chances are, you aren’t walking your road alone. Someone else is, or has, and there is someone out there to confide in. As long as there is always a someone else, there will never be a self in support.

5) Life simply is - Refer back to number 2 for a moment. Some things are just not meant to be understood. Life as a whole is like that. No matter what we think we know, or what we for fact know, the only great certain is that life is. Through good times and bad, life just is, and that’s better than life not being at all. It’s the most basic of knowledge that can get you through another day, another treatment, another scan. The fact that you are means life still is. And given the alternative, that’s a pretty great thing to know.

Fun to fall down and get back up

My parents came to town a few weeks ago, and on a chilly-yet-sunny May day, we loaded up the van and visited a nearby park. Swings, soccer, football, tag, monkey bars, walks, runs... I glanced over my shoulder and saw Liz fall to the grass. As I stepped toward her, she waved me off, stood up, and kicked the soccer ball to Cohen. She smiled, looked at me, and said, "It's fun to fall down and get back up."

We went back to the cancer center yesterday for Liz's regular tri-weekly treatments. This time around we also met with the doctor. We have never seen him so optimistic and excited for her prognosis! It's all good news: her blood work shows levels completely in the normal range, the recent CT scan shows no evidence of cancer anywhere, and we get to reduce the frequency of another one of her medications. The treatments are working with no indication of slowed effectiveness.

Wow.

Flashback to October 1995, a couple of months before I began my two-year mission service in Germany for my church. I distinctly remember hearing a talk from a church leader, Elder Richard G. Scott, but I hadn't thought much about it since that time...until last week, when I came across the quote again:

"Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benefit. To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain."

The message here seems universal. Challenges can hit you like a flash flood. Sometimes bad things happen to good people, not due to any fault of theirs, or actions caused by others. If we can gain the perspective that we can learn, stretch, and grow through our challenges, we will be better positioned to show empathy to others and be more willing to help others get back up after they fall.

Somehow we made it through these past couple of years, through all of the highs and lows. Liz just completed her second 5K last week, she digs up trees for fun, I just finished the Notre Dame MBA, Cohen was proud to graduate from first grade at the same time as dad, Jensen completed preschool, and Eli babbled his way to the ripe old age of 20 months. We are blessed. And it really is fun to see Liz get back up after a fall.

Go Team Liz!