met with the plastic surgeon today.

Today we met with Dr. Jason Miller, a plastic surgeon in Omaha who also works at UNMC.  In the photo, he is with Charlotte because he is the doctor who performed the posterior vault reconstruction on her skull back in March.  He is a respected surgeon at Children's Hospital, the Med Center and the Aesthetic Surgery Center, so he was a logical choice for our consultation today.

We learned today that:
-the incision is still a little red and a little bumpy
-the size of the sutures used were a bit big for the face
-the bumps are scare tissue
-Mike should massage the bumpy scar tissue because it can disperse the collagen
-it may flatten out after a year and "it might be OK"
-an 'acceptable' scar is thin, flat and does not draw attention

The nurses and Dr. Miller were a bit surprised that Dr. Heibel chose the closure that he did (the large jagged "T") for an elliptical defect. Doctors are always very gracious and guarded with their comments about another doctor's work, but he did say "there are some things that could have been done differently" and "I personally wouldn't have put that big of suture on the face".  He also commented that "the hematoma (bleeding) was unfortunate".   These were my sentiments exactly, and somehow it was comforting to hear them.

Of course we couldn't help asking how he might have closed the 'eliptical defect' or quarter-sized hole in Mike's head after the cancer was extracted.  He drew a little diagram showing a 'cat eye' as one option and a rhomboid flap as another option... very interesting.  I think Mike felt a little better hearing that "the hallmark of a hematoma is exquisite pain".  Mike had happened to mention how painful it was when they had to unstitch and re-suture the area because of a bleeder.

Maybe the best part of the day is that we secured the names of three excellent MOHS certified dermatologists in Omaha - that don't hesitate to send cases to a skilled plastic surgeon for closure when needed. One of these men will be Mike's new dermatologist, and we are thankful for that.

Dr. David Watts
Dr. Anthony Griess
Dr. Scott Debates

skin cancer blues.

Sometimes I blog for the sheer pleasure of it.  Sometimes I blog for my sanity.  Sometimes I blog hoping that somebody out there will learn something helpful from something we have been through.

It continues to be a bit of a mystery to me why this skin cancer trail ride has been so distressing for me. But in the process I have learned a few things.

1. It is important for me to use a doctor that has good communication skills.
If I had done my research a little more carefully I would have discovered that Dr. Mark Heibel does not score high on communicating procedures and expectations with patients.  If I would have known that there was even a remote chance of an incision longer than a quarter of an inch, I would have aligned my expectations accordingly and I would have secured plastic surgeon closure options. 

This skin cancer scare with Mike prompted me to make a visit to my own dermatologist, Dr. Peter Hino in Dallas.  And guess what?  I learned more about Mike's procedure from Dr. Hino than I heard from Dr. Heibel's mouth.  I learned that 90% of the time, basal cell carcinomas don't need a MOHS extraction.  I learned that the kind that Mike had was called Sclerosing Basal Cell, which is the kind that has tendrils, and thus needs a deeper incision for a clean margin.  I learned that most dermatologists do their own closures, but most have plastic surgeons that they work with.

I realized that I prefer a doctor who is not so arrogant that they cannot discuss pro's and con's of using a plastic surgeon for closure.  It is never wrong to do your own research, to ask thoughtful questions, and to expect a respectful dialog.

2. Stick to your guns and pursue a plastic surgeon if you require stitches on your face or hands.
If there is anything I have learned over the past ten years it is that you must be your own advocate - or your patent's advocate - in the medical community.  Always follow gut.  Always take extensive notes.  And never leave a loved one in a hospital alone.

And if you need stitches on your face or hands, insist on a plastic surgeon for the closure.  You might have to wait a bit and you might even have to go to another hospital emergency room, but you won't be sorry. 

On Monday, August 19 Mike and I will be going to see Dr. Jason Miller, a plastic surgeon in Omaha, to get his thoughts on the power "T" on Mike's forehead.  I am looking forward to hearing what he has to say.

This is a good time to remember "If money can fix it, it is not a real problem."

skin cancer ride.

 

 We were not prepared for the ride we took yesterday.  We headed to the dermatologist in Lincoln for the removal of a tiny smaller-than-a-pencil-eraser Basel cell carcinoma from Mike's forehead.  It is the thing that looks like a 'bindy' in the BEFORE photo above.  I have had maybe a dozen of these removed from my face over the past five years by Dr. Peter Hino in Dallas.  No big deal.  Just a little scrape with his tool, and my job is to keep a band-aid on the little hole for 5 days.  Mike's "little Basel cell carcinoma" was in a different category... the kind of category that the bigger part of it is hidden under the skin.  The kind that grows legs or tendrils.  We knew that Dr. Heibel planned to use the MOHS method to remove it.  This means that he removes the suspicious mass, then sends the tissue to the lab in the next room, and you wait to see if the margins are clean --- or "if they got everything".  Well, it turned out that Mike needed a second deeper round to remove all the cancer.  In all, there was a hole about the size of a quarter.  (I will spare you that photo.)

What we were not prepared for, were the incisions and stitches made to close the hole where the cancer was extracted.  The day might not have been as stressful had we seen this coming.  I was thinking 'pea sized mass removal, maybe a stitch or two'.   I was thinking, we can live with a half inch scar...

When I walked into the room and saw the massive incision and who-knows-how-many-stitches, you could have knocked me over with a stick.  It seemed to me like it must be some kind of joke or prank.  What were they thinking? Certainly they were kidding.  While I am currently in the midst of researching incision methodology and plastic surgery procedures, I may come to find out that this is genius.  I just have not arrived there yet.

It got worse.  After we left the doctor's office, we were even able to joke about the huge bandage taped to Mike's forehead.  We ate lunch and laughed with the waitress "What, do I have something on my face?"  It wasn't until we were heading for home and I started noticing some serious swelling.  They had not mentioned swelling.  And now Mike was in pain.  A lot of pain.  I called the clinic back.  They wanted us to return to have it checked out.  They suspected internal bleeding and when we arrived they said "Let's open up the stitches, find the bleeder and stitch you back up."  At this point I said, as nicely as I could "Do you have a hospital you work with so we could do it there?"  To which the doctor just turned and said "Why?" 

I wanted to say "Because this is Mike's face, and I would like a plastic surgeon doing the work.  Because Mike is in a tremendous amount of pain. Because something has already gone wrong today, and what if there were further complications. Because I don't have a good feeling in my cc (cancer coordinator) gut.  Because you haven't had a chance to earn my trust yet."  But I didn't say anything because Mike was glaring at me and had asked me not to "tick off the doctor".  I left the room and had a very dark, scary hour and fifteen minutes.  I tried to remember why we selected this guy as Mike's dermatologist.  I think it was because we felt he would be thorough... and a lot of people go to him. I knelt down in a hidden corner of the waiting room and prayed.  And cried.  I called my girlfriend and cried some more. 

At 5:15pm Mike walked back out with a smile on his face, looking like he had been in a car wreck... or bad fight.  We headed home.  But first, we stopped for the much needed narcotics at HyVee.  Up to this point, he had only taken 4 Tylenol, which were not doing the trick.

Mike is one tough guy.  Through Mike's two cancer surgeries in St. Louis for his tonsorial cancer, he never took a single pain pill.  He was asking for it yesterday.  In all of our cancer journey since January 2011, I had never seen Mike in so much pain.  It was hard for me, because pain doesn't usually register on Mike's scale... and I was not used to seeing it.

So there were several factors that made June 24th a scary day.  We were not prepped for the radical nature of the procedure or the possibility of it.  There was serious pain involved.  There were complications.  And all the while I wanted a plastic surgeon on the scene.  All that said, we are thankful that the cancer is out.  I might also descover that Dr. Heibel is in fact as skilled, or more skilled than a plastic surgeon.  We will see how things heal and wait to make that call.   If not and if need be, we can always opt to have his forehead fixed in the future.

 

 

This is Mike today. AM on top and PM on the bottom.  He still looks like he has been in a bad fight.  I guess he has.  Maybe we need to ask sister Melinda to write another poem about "Cancer Clyde" and the punches he throws.

two year check.

Did I really just type "two year" check?  Has it really been two years since we started this cancer journey?  Two years since I started this blog?

Last Wednesday, March 20, 2013 to be exact, we ventured back to St. Louis for Mike's two year checkup.  Please rejoice with us that the words that came from Dr. Bruce Haughey after a thorough check of Mike's throat and neck were "Great. 100%"  You cannot imagine the relief that swept over us. 

If you would have asked either of us if we were stressed over this checkup we would have replied with something like "haven't thought much about it".  But underneath everything, there is a strong under current that feels the strain and then releases at the sweet news that no cancer has re-surfaced.

I had forgotten the significance of the "two year" mark.  With Mike's particular kind of cancer, if it has not returned by the two year mark, there is a 90% chance that it will never, never, never return.  (It was comforting to repeat the never part.  Thanks for indulging me.)  Dr. Haughey's sweet nurse Nicole put it this way: After the two year mark, we are not so concerned that it will come back.  So this is when Dr. H says he will share a can of Coke to celebrate. 

We did better than Coke.  See the Blanc de Blancs (below) that awaited us at the Vespas when we got back to their house!  We had a celebratory dinner complete with wonderful wine, a gourmet dinner, toasts by the fireplace and Irish music in the background. 

Mike continues to build his muscle strength after the massive burn out of neck and shoulder tissues from the radiation.  Dr. H talked about the fibrosis or scarring of the tissue on his neck, how there will be a continuing fibrotic change in the tissues, and how the DNA effects are never litigated.  What I know is that Mike has started a regular workout routine at Anytime Fitness - and Mike's Gym aka pull-up bar in the basement. 

We talked about how we will never "get off the bike"... but the journey just changed... for the good.

BLESS THE LORD OH MY SOUL. AND ALL THAT IS WITHIN ME BLESS HIS HOLY NAME.

kind of funny.

As previously mentioned, Mike and I are on a quest to recover successfully from the cancer journey.  This is a many faceted task, but in our research this quest took us to see Dr. Todd Frisch in St. Louis in September.  We were most interested in finding help for Mike's irritating post-radiation side effects.  I have also been aware that my immune system had taken a real hit.
 (Cancer Journey + Move + New Baby + Wedding = Not as vibrant Karen)

It would be hard to sum up the scope of this kind & brilliant man's work.  But he brought clarity and insights that we needed, and shed much light where we had no answers.  I could write pages and pages... but this is what I wanted to share in today's post: 

Part of Dr. Frisch's examination included having adrenal tests - which is having our saliva tested.  We had to put a small pad in our mouths at specified times throughout a 24 hour period.  We sent them off in the little glass tubes and awaited the lab results.

In a nutshell, Mike got an almost perfect report.  To quote Dr. Todd on the report that arrived later "Your test is remarkably good considering your health scare." Also "amazing and quite unexpected!"

And the funny part (well, not really) was that my report of concerns was almost two pages long.  I have an elevated cortisol load and depressed 17-OH progesterone to name a few. This totally synced with the not-as-vibrant symptoms I had been having.  I guess it was comforting that Dr. Frisch said that it was very common for him to see these imbalances for the caretaker after a medical roller coaster ride.  Thankfully, we have a good plan in place to get me up and running again.

Let us just say - we are extremely thankful that in God's good providence we discovered Dr. Todd Frisch.  The world would be a better place if there were more doctors like him in practice.  Please feel free to visit his web site if you are interested at drtoddfrisch.com.  And if you live in the St. Louis area you might want to make an appointment.

another great report.

 This photo was taken just outside Dr. Haughey's Ear, Nose & Throat office on the 11th floor of the Siteman Cancer Center in St. Louis.  See the St. Louis Arch on the skyline in the background between us? Right by my cheek.

 Dr. Haughey's darling and intelligent staff - at least part of them.

We love our St. Louis routine. Starts with a 45 minute Southwest flight.  We hop off the plane and onto the Metro Link to the Central West End stop. Then straight to Dr. H's office on the Barnes Hospital / Washington University campus, suitcases and all.  (This trip three people asked "Are you moving in?")

THE REPORT
The post-surgery visits are similar.  They nasal spray Mike at the start of the check to numb up the passageway.  Dr. Haughey comes in after a bit and does a visual examination, then a 'massage like' exam of his neck area.  He can tell immediately if there is something out of place.  Then he scopes Mike by inserting a video camera device on the end of a long tube into his throat cavity through his right nostril. (Yes, that is correct.)  I marvel every time how Mike manages this so bravely.  Dr. Haughey gives a verbal report that his RN types into the computer during this entire process.  You hear words like "soft palpation, good", "no lesions seen", "base of tongue normal".  I felt sheer delight and felt my body let out a huge sigh of relief when I heard him proclaim at the end "Looks 100%".

For some reason, this visit felt even more affirming to me. Maybe because Dr. H has said the same good report three times now.  Maybe it was because the nurses took time to talk with us at the end of the appointment and said things like "You know, Mike really looks good.  He is really healing well.  We see a lot of people, and he really looks good." Maybe because in the waiting room this visit every other person in the waiting room had a very serious deformity from their head & neck cancer.  I walked away from our day with an overwhelmingly thankful heart.

Another sweet thing happened.  Precursor to the story: I had been telling Mike that it might be a good idea for him to try to get more sleep to help him recover from the lingering radiation side effects.  I am sure Mike deeply respects everything that I say... (I am smiling)

But Dr. Haughey happened to say: "Sleep is your best aly.  We know that the growth hormone is only secreted during sleep. Get 8 hours to be protective."

Straight from Dr. Haughey. The advice just got elevated to important. I quickly added that I did not pay him to say that, and Dr. H added he said it off the cuff.  This bit of wisdom coupled with the good report were worth their weight in gold.

A fun side note was after Dr. H checked Mike's shoulder muscles for loss of strength, Mike added that he had officially started working out again - and he was up to 30 pull-ups.  He got a rousing 'whoa' which I am confident will spur him on with his workouts.

In the same way that we did extensive research to find the best way to remove Mike's cancer (which resulted in finding Dr. Bruce Haughey), we are now embarking on a journey of how to best recover the immune system from radiation.  Western medicine does an excellent job of targeting and eradicating most cancers, but does not provide much insight in how to recover from treatment side effects.  We are on our way to recovering vibrant health... but that is another story for another day.

check up time.

It is that time again. We are sitting in the waiting room at the Siteman Cancer Center at Barnes Hospital Washington University School of Medicine... Waiting to see the doctor we are so thankful for. We will let you know what Dr. Haughey has to say after our appointment.

May we say thank you for your prayers.

we love fremont dental group.

This is the woman, along with Dr. Emily McCarthy, who found Mike's suspicious lymph node during a routine dental exam that led to us discovering Mike's cancer in his throat.  Her name is Shelly Steinkruger and we will be forever grateful for her.  Not only are her routine examinations thorough enough to detect this detail, but her compassion and care are off the charts.  (She still cries when she hears about Mike's journey.)

I had my routine teeth cleaning this week and the girls at Fremont Dental Group had asked to see Mike's radiation mask so Mike sent it with me.  This explains why Shelly is holding it in the pic.

Besides sharing our profound thanks for the excellent dental care we receive at Fremont Dental Group, this post is to encourage you to get the BEST dentist that you can find and keep regular dental care appointments.  Dentist chairs are where head & neck cancers can be found in the early stages.  And while no one wants any cancer in the early stages, it is a far cry better than discovering a cancer in the later stages.  When is your next dental check-up?

The number for Fremont Dental Group is 402-727-9100 if you are in this area.

8 more.

I realized this week that I left out some fun information about Mike's checkup in early April with Dr. Bruce Haughey at the Siteman Cancer Center in St. Louis.

1.  Mike put on 8 pounds since his December 20, 2011 checkup!

2.  Dr. H also said that Mike's salivary function should improve over a year, which we would love.

We are in the midst of conducting our own post-radiation research right now, as Mike is riddled with itchy red spots on his body.  They are the size of small to medium bug bites and itch like heck.  I know it is bad because Mike weathered his surgeries without a peep of complaining and very few peeps were muttered through his radiation series - but he is peeping about these spots.  We thought they were in random places because they are basically all over -  but our knowledgeable massage therapist Tara Currier said they are actually along Mike's meridian lines. So now we are thinking that his liver might be working to cleanse his body of the radiation toxins.  Just so you know, Mike has been to Dr. Martin twice for the itchy spots and has had a whole series of blood work done and it all came back clean.  He was treated for mites as well - but it wasn't that.  Antihistamines do help and sometimes Mike takes them to tone the itching down so he can sleep.

We covet your prayers for this - and we are doing more research.  We plan to see an Integrative Medicine doctor in St. Louis sooner rather than later. We will keep you posted.

amy and psalm 139.

I was re-reading some correspondence from a dear friend you battled cancer with grace and diligence.  May I share her insights that enrich the meaning of the glorious Psalm 139?

You will laugh when I tell you that I used Psalm 139 as my "spiritual imaging" psalm. Think about being shoved into one of the giant "machines" (bone scan, CT scan, PET scan) and then read the psalm. It's God's spiritual "machine"! He sees deeper, better, more comprehensively than any of our high-tech machines. They can't even interpret the liver lesion on my CT scan or decide whether the primary tumors in my breast are enlarging. But God sees and knows exactly what is inside us-- physically, emotionally, psychologically, spiritually, etc. He even sees beyond time to before we were born! I love the last stanza; I keep telling God that it is one thing for the doctors to find spots of cancer in my body, but it's more important that He find the spots of spiritual cancer in my soul. That's the report I need to pay attention to!! 

Amy Sternberg - from an email written September 15, 2006

thankful.

We continue to be more thankful than words can express adequately for Dr. Bruce Haughey and his staff.  And we are overwhelmingly thankful today to hear him say "can't find anything the matter".  During Mike's scope I only heard words like "it's good" or "it's great"... music to our ears.  Dr. H also reported that Mike still has a fair amount of saliva - which is encouraging.  Mike is always noticing the lack of it, but comparatively it looks like we should be in the thankful camp.

Dr. Haughey was telling us about some of his current research data which ultimately will put the treatment plans in line with Mike's kind of cancer (instead of the old smokers' version that still dictates the protocol.)   Bruce shared that this kind of cancer is fought by our own immune systems very well so the goal of treatments is to make the disease burden so tiny that your own immune system can attack and conquer.  We are so thankful for the care we have received and Dr. Haughey's continued research.

st. louis welcomed us.

We got an ALL GOOD report today, and St. Louis welcomed us.  The weather was intoxicating - fresh & crisp with everything in bloom.  We did lots of walking today and it was refreshing. Our good news was such a blessed relief that we both took a serious nap - Mike is still asleep.

Now our home-away-from-home is filled with amazing fragrances... Tom cooking Bolognase lasagna made with freshly made lasagna noodles made with fresh garden spinach. Ahhhhhh.  And Italian Prosecco.  A blessed day.