No Pain, No Gain*

For some reason these words popped into my head last week.  It might have something to do with the fact that it was while I was getting a mammogram and I was seriously trying to consider what I was gaining, other than pain, from this experience.  Mind you, an experience that I had actually called and made an appointment for.  Two things actually came to mind.  First, I was witnessing a modern day miracle as I watched the technician try to take nothing and make it into something, only then to try to flatten it back into nothing.  And second, peace of mind.  Peace of mind - now there is a legitimate gain.  I thought I would apply my “peace of mind gain” to Kevin’s situation, and it just didn’t fit. I’ve stretched my brain all week trying to think of what Kevin is gaining from the pain he is in.  All I came up with was a little bit of sympathy and a stronger prescription.  The only conclusion I have is there must be an asterisk next to the phrase.  You know, the little asterisk that your brain overlooks because the words “EVERYTHING ON SALE” are screaming at you, and only with a second look and a magnifying glass do you finally see that little asterisk with the words “some restrictions apply” next to it.  I’m pretty confident this phrase must have an asterick:  no pain, no gain*  (*exception: there are times when there is pain, and no gain) That makes me feel better, but it doesn’t do much for Kevin.  He just got his 2nd round of chemotherapy this afternoon. Have I mentioned that we are using standard drugs right now?  Kevin’s not too happy about it. . .I guess, who would be?  This is Dr. Chawla’s recommendation, as the yondalis clinical trial was obviously not working for Kevin, tumors are growing, and we need to get the situation under control before trying another clinical trial (like the CoQ10).  Kevin’s white blood cells count was too low last week to get a round of chemo.  They say that’s what happens when you are getting blasted with radiation daily for over 3 weeks in two different spots.  So, here’s what the Hegewalds are praying for:  that Kevin’s sight will return to normal; that the radiation will be effective to alleviate the pain in his back and shoulder; that the chemo will slow down tumor growth; and what the heck, we still pray for peace of mind.  

I love you, babe

Bucket list #9:

Attend live U2 concert  - check!

“I love you, babe”

“I love U2”

Thank you Randy, Carri, and Christy for making it happen, and experiencing it with us.  It was a beautiful day.

Every eight years Kevin’s birthday falls right on Father’s Day.  This is one of those years.  I secretly cheer as I am able to roll the father’s day birthday celebration all into one.  It’s hard for me not to reflect back 8 years ago when we were having such a celebration.  Kevin had just been diagnosed with cancer the first time.  My parents were here visiting because Josh, our oldest, was baptized the day before, and Kevin was starting his first round of chemo the next day (June 20). We gave Kevin a big leather lazy boy type chair - “a cancer chair” called by some; a “healing chair” called by my mom.  My sister and brothers gave Kevin one of his favorite prints - “Prayer at Valley Forge” - a portrait of George Washington kneeling in prayer beside his horse.  That print has hung majestically above our mantle for the past 8 years.  It signified all that we needed to face our challenge - courage, humility, and a knowledge that it’s only possible with the Lord’s help.  Today we took down the George Washington portrait and replaced it with our most recent family photo.  Ironically, we find ourselves in a similar situation as 8 years ago.  But this year, Kevin’s parents and sister are here to celebrate the day with us, and our youngest, Sam, will be getting baptized later this year.  The “healing chair” is still here - all broken in with the leather all soft and worn - and the new picture above the mantle still portrays what we need to face our challenge - each other.  We still have courage, and we still pray for humility, and fortunately, we still have the knowledge that it’s only possible with the Lord’s help.  But what we’re really, really grateful for today, is that we have each other.  

Kevin, I love you, happy birthday, happy father’s day. . .eight years from now, I will let you hang whatever you want above the mantle!!  Birthday cake today . . .chemo tomorrow!  xo

Today - by the numbers

3 number of hours Kevin received chemotherapy (started standard drugs treatment today; 
        will go 3 Mondays on, then 2 Mondays off, etc.)

10 number of radiation treatments left on his groin

13 number of radiation treatments left on his spine (location of tumor responsible for
        shoulder pain)

4 number of fingers Kevin sees if I hold up 2 fingers (waiting patiently for his vision to be 
        restored)

20 number of mg. of decadron Kevin took 

2 number of diet cokes Abby drank (total red flag)

3 number of kids sick with a cold

4 number of empty kleenex boxes

1 number of flat tires fixed

3 number of men who saw me in my pajamas getting flat tire fixed

5 number of feet of moldy drywall removed from my kitchen

2 number of fans in my kitchen

0 number of mistakes Sophie and Ben made in their piano recital

7.5 number of days left of school

~ (infinite) number of ways we’ve felt blessed

Spot Welding

Last week I attended an eighth grade awards ceremony for Sophie.  I watched as 14 year old boys and girls, when hearing their name announced, walked up to the stage, were presented a piece of paper, and then stood awkwardly smiling as all of their peers and parents stared at them.  I realized a little sadly that this would be the last time I would see Sophie take the stage in Middle School . .off she goes to high school next year where the opportunities to take the stage to hold a piece of paper are almost nonexistent. I came home and told Kevin that our society has done an amazing job inspiring teenagers to achieve great things just for a 6 cent certificate.   Now imagine my surprise with the following incident.  Last Friday, Kevin completed his 5th and final round of cyberknife to the skull.  As we were leaving the office and saying our hearty “good byes” with no “see you tomorrow”’s attached, Kevin was presented a certificate.  It congratulated him for having “completed the prescribed course of Radiation Therapy with outstanding courage and determination.  It is recognized by our staff as an Honorable Achievement, and we would like to congratulate you on a job well done.” This 6 cent piece of paper with photocopied signatures and his name written as “Hegewald, Kevin” actually choked him up.  It made me realize, it’s not the paper. (duh) It’s that someone has acknowledged that you’ve accomplished something great.  Isn’t that one of the nicest things in the world - being recognized.  When I asked Kevin why he didn’t get a certificate the last time he completed cyberknife, he responded, “I don’t know . .maybe you have to do it more than once.”  I think that’s it.  Anyone can get perfect grades or survive cancer or survive cyberknife once. . but to do it twice, now that deserves a certificate.  

Unfortunately, our certificate celebration lasted about 15 minutes.  On the car ride home Kevin spoke to his oncologist’s assistant who reminded him that to participate in the new drug study he needed a 28 day washout period from any radiation before starting.  So Kevin’s next call was to the radiation oncologist.  He could no longer ignore the growing lymph node in his groin. (When I told Kevin that I felt a little uncomfortable using the word “groin” he and the kids gave me several other anatomical suggestions.  I’ve decided to stick with “groin.”)  Kevin has had some inflammation in his left leg as a result of the growing tumor, and radiation was being discussed until the double vision skull buster showed up. (Think of Kevin’s body like an emergency room.  It’s only considered an emergency until something else more urgent comes through the door.)  And guess what?  That poor groin tumor got upstaged again!!  Friday afternoon an intense and horrific pain struck Kevin in his left shoulder blade.  It left him frantic as he needed to leave for work in less than an hour.  Pain killers.  no relief.  Lidoderm patch.  no relief.  A desperate prayer.  relief.  The Lord completely blessed Kevin to be able to work his shift and crawl into bed 9 hours later.  The pain has continued since then, but it’s a testimony to us both that the Lord will provide when we need it most.   So it looks like, in Kevin’s words, he will be doing some more “spot welding.”  A little here, a little there.  It starts tomorrow with standard radiation to the groin tumor.  How many cycles, and where to radiate for the shoulder pain are yet to be determined, but if he faces it all with courage, there just might be a certificate for him.

Anything but normal

I am going to come clean on one of my nicknames.  It comes from the classic movie, Young Frankenstein (pronounced -steeen, not -stine) There is a scene where Dr. Frankenstein, played by Gene Wilder, puts a brain, that his assistant Igor hands him, into this huge 10 foot monster he has created.  The monster flips out and goes all crazy and psychotic before the Doctor sedates him.  He then asks his assistant (now this is really only funny if you can hear it in Gene Wilder’s voice with all the appropriate dramatic pauses)

Dr: “What . . was the name . .  of the brain?”  

Igor:  “abby?”

Dr:  “Abby, who?”

Igor: “abby . .normal?”
I was totally ok with being called “abby normal” because quite honestly I’ve always felt normal.  Until yesterday.  Yesterday when I looked down at the three things on my “to do” list, I realized: I am finally living up to my name - I am completely abby normal.  (Well, really it’s my life that’s abnormal, not necessarily me.  Except don’t ask my kids.  Or my husband)

TO DO LIST:

1. Call to reserve tennis court for Sophie’s lesson
2. Call plumber about kitchen leak
3. Call two priesthood brethren for a blessing for Kevin

Let me elaborate.  

1. Call to reserve tennis court.  Self explanatory and a normal thing I do.   
2. Call plumber.  Needs clarification, and thankfully, not a normal thing I do.  Friday morning I woke up to a puddle of water on my kitchen floor.  With a little investigation (just followed the dripping water trail from the cabinets), I found water seeping through the backs of my kitchen cabinets.  Several shelves were warped, the back dryboard walls wet and stained, the kitchen baseboards wet.  Ironically, I thought, “what perfect timing,” because today (Saturday) I had two drywallers coming to fix my kitchen ceiling and my master bathroom wall from the water damage caused in December from roof leaks during torrential rainstorms.  Unfortunately, they will have to come back in several weeks after all of the water is dried up.  That’s ok.  I can live with drywall holes in my kitchen cabinets and a dry wall hole the size of Sam in the computer room.  The electric fans just feel like extra furniture, except for the cords.  (By the way, the leak was from a main water line - a teeny pinpoint hole in a copper pipe - crazy)
3. Call two priesthood holders.  Again, needs some clarification, and again, not a normal thing I do. With Kevin’s first cyberknife appointment lined up for 2:30 pm on Friday, we felt it important for Kevin to receive a priesthood blessing from two worthy priesthood holders in our church.  We are completely putting our trust in the doctors, and our trust in the technology, to help kill this tumor and restore Kevin’s normal vision.  We wanted to show the Lord, that most importantly, we have trust in Him.  Kevin received a special blessing of comfort and assurance that the procedure will be successful.  We are so grateful for the friends that we were able to call on for this special and sacred blessing.

Yesterday Kevin tolerated the cyberknife procedure extremely well - 43 minutes of lying still on a board with a claw clamped on his face.  He will be getting four more treatments next week - Tues, Wed, Thurs, and Fri.  The doctors said, “we have ONE chance to get this thing so we’re going for it.”  Kevin was happy that all of the appointments don’t interfere with his work schedule. (whatever) So I am trying to embrace my “abby normal” nickname. It fits me, and I’ve been called worst things before.  

Day by Day

9:20 am.  Thursday, May 26th

Josh, Sophie, and Sam are all at school.  

Ben is in Southern Utah exploring caves and hiking with friends.  

My mom is on an airplane flying home to SLC with two empty seats beside her meant for Sam and Kevin.

Kevin is asleep with a book on his chest and his Ray Ban glasses on.

I am sitting at the computer overwhelmed with how I can report all that has happened the past four days.  

Then it came to me.  I will report what has happened just like how we survive our situation - day by day, one day at a time.

Saturday, May 21st

Kevin’s younger brother, Andrew, surprised us with a 2-day visit.  Andy’s “to do” list on Saturday morning looked like this:  1. Run in Ogden Marathon.  Place 18th overall.  2. Get on plane to spend a chemo day with Kevin.  (Kevin is not the only Hegewald who can achieve Herculean feats.) It was one of the best surprises yet!

Sunday, May 22nd

After church in the morning and a big Sunday dinner, Kevin went to work that night.  You have all heard stories where someone says, “one minute I was _ _ _, and the next minute, bam!”  Kevin has one of those stories.  One minute he was at work, feeling pretty strong, and the next minute his eyes couldn’t focus across the room.  Twelve hours later the fuzziness had  become double vision.  He told me I still look beautiful . .even if I do have three eyes.

Monday, May 23rd

My mom flew in for Kevin’s chemo days to help keep my kids and home functioning.  She does laundry, helps with homework, packs sandwiches, pulls weeds, plants flowers, shuttles kids from school and to lessons, and most importantly, cheers us on.  Kevin, Andrew, and I drove up to LA for Kev’s round 4 chemo appointment.  Honestly, chemo days are always long and a little emotional.  It was fun to have Andy along for the ride; off he flew that night.

Tuesday, May 24th

Our good friend Myron Wacholder gets the perseverance award of the day.  Myron drove Kevin up to LA to turn in the pump, and then stuck with him the entire day - which took quite a turn!  Dr. Chawla ordered a brain MRI to investigate the double vision.  Unfortunately, a tumor was found in the clivus, the bone at the base of the skull.  An infected piece of the bone is pressing on the nerve that controls the left eye.  Kevin was miraculously able to meet with Dr. Steve Damore, the radiation oncologist at Saddleback Memorial, who felt like the tumor would be a perfect candidate for cyberknife (remember that cool name - it’s the same radiation technique  Kevin got on his spine in March).  Dr. Damore started the process to get the necessary approval, with the hopes that Kevin can receive his first treatment on Friday.  Sadly, this meant Kevin would have to unpack his bag for his weekend getaway.  Kevin has been so excited to take Ben and Sam to the BYU Fathers and Sons Basketball Camp. (Yes, I thought it was a little ambitious from the get go, but I have witnessed that chemo does not slow him down!) Ben’s granddad volunteered to be Ben’s partner and has been practicing dribbling a basketball.  Thanks to Morgan & Ken, Ben was included in the drive and all the “precamp” activities. At the end of a long day, I, for the first time in my life, went to bed with a pirate. hee hee  Kevin was sporting a pirate patch I found in our Halloween dress up.  Surprisingly, I had three different styles to choose from.  

Wednesday, May 25th

Kevin and I left early Wednesday morning to meet with Dr. Paul Song, an oncologist at St. John’s Medical Center. We spent an hour learning about an exciting new treatment for cancer patients. (Clearly, Yondalis, the chemotherapy drug, is not working on Kevin.)  Dr. Song’s drug is in a phase 1, clinical trial.  The drug is actually the vitamin, CoQ10.  CoQ10 works on the mitochondria of cells.  It increases energy in healthy, normal cells, but has the opposite effect on cancer, or out of control, cells.  Kevin got very excited for several reasons.  He likes the idea that it supports the good cells, while stopping the out of control ones. (not typical chemo that kills the good along with the bad) He likes that it is completely nontoxic; patients actually start to feel better on the treatment.  Also, his dream of having an excuse to drive every day to Tijuana was about to be fulfilled.  (Only when he heard that he would have to STAY in the hospital in Tijuana from Mon- Fri, did he accept the alternate site of LA)  We spent the next hour visiting with Bob, a patient with pancreatic cancer, who is a living testimony that this new treatment is working.  Next stop, Beachside Optometry.  Kevin traded in the pirate patch for a very stylish looking pair of Ray Bans.  With a little clear tape covering the inside of the left lens, Kevin not only achieved better sight through his right eye, but felt a little more like a “normal person.” (kind of an understatement; we didn’t see one other person wearing a patch today) The end of our day was spent at Orange Coast Memorial getting another brain MRI and scan in preparation for the cyberknife.  It was absolutely nothing short of a miracle that our insurance preauthorized the procedure in record time (according to them).  In a little bit of a terse conversation, Kevin said, “Your idea of ‘urgent’ and my idea of ‘urgent,’ must be two different things.  I work in the Emergency Room and when we say ‘urgent’ it happens within the hour . .not three days later.”  Dr. Rob Jackson, neurosurgeon, and Dr. Damore, radiation oncologist, met late this night to do the planning and mapping of Kevin’s cyberknife - planned for Friday afternoon.  

Today

I find it absolutely impossible to read the events of the past four days and not recognize the Lord’s hand in our lives.  We are so grateful to the dedicated doctors who have helped Kevin this week.  We are so glad that the insurance company redefined their definition of “urgent.”  We have been blessed to have met Dr. Song and Bob.  I am so grateful for the flowers and the special package from the dearest of friends that arrived at the right moments.  Those special deliveries include both Andrew and my mom.  I have a confession: I have fallen asleep more than once this week while saying my prayers.  I start out by saying all that I am thankful for, and because I’m so dang tired and the list is so long, I’ve fallen asleep before getting to the part of asking Kevin to be healed.  I am grateful to know that all of you are helping me with that - you’ve got my back. (and I’ll do better) I’m hoping that the Lord will know how very grateful we are, and will continue to shower us with his blessings.  Day by day, one day at a time.

VIP

Is it safe to assume that everyone knows about “ward ball?”  It is infamous in Mormon culture.  It’s the forum where grown men meet on a basketball court and act like they are still in high school.  Not so popular, or even well known, is “ward ball” taken to the soccer field.  This attracts an entirely different group of men as most of them look like they are still in high school.  They are young and fit and stylish; so this speaks volumes of Kevin’s soccer skills to be included in this club.  The way Kevin describes it is, “There are two teams - the “A” team, and the “old mans” team . . of which I am team captain.”  (I apologize to the other team members for lumping you into the title of “old mans” team.  I also apologize if someone else is actually the team captain.  I can only go by what Kevin tells me.)  For the past two years, these men have been meeting late Monday nights to play indoor soccer games. These men LOVE soccer.  Many of them are passing down their passion for the game to the next generation.  Last Saturday, four of these men were squared off coaching their 7 & 8 year old boys’ indoor soccer teams.  Sadly, Coach Kevin was at work when our team finally got their first win!  The game was so exciting it put one of the coach’s wives in labor! The other team’s coach pointed out that at one time they only had three players on the court.  Yea, we noticed.  And we didn’t care!  We finally won!

Saturday night Kevin was given total VIP treatment to the LA Galaxy game with the “soccer hooligans.” Josh and Ben were invited to join in the fun. (Sam was recovering from his big win.) Probably a little concerned about spending the night with dad’s friends, Josh asked me who was going.  I only had to mention Ryan’s name, the master planner, for Josh to say, “that’s cool.  I’m good.”  It’s true.  These guys are the epitome of cool.  And they have their standards.  When they picked up Kevin from work and discovered that he had scrub bottoms on, they walked him into the nearest Ross, and 10 minutes later Kevin was sporting a $26 pair of Calvin Klein jeans. (I’m not sure who will be more embarrassed by that detail . . Kevin, or the guys who wouldn’t be caught dead in a $26 pair of jeans from Ross.)  Kevin’s wardrobe was just the beginning.  Every detail of the evening was perfectly orchestrated: Transportation in the Skull Candy 12 passenger van, Dinner at 5 Guys, VIP passes for the Hegewald boys onto the field to watch the players warm up (imagine standing an arms length away from David Beckham), Goody bags with every type of Galaxy paraphernalia imaginable, Box seats to watch the game, and somehow they even arranged Beckham to bend one into the goal.  Amazing!!  Or as my boys would say,“waaay awesome.” 

Thank you Ryan for organizing, thank you Jared for knowing the right people, thank you Jeff for chauffeuring, and thank you friends for loving soccer, but loving Kevin even more!!

Down on the field with LA Galaxy

Soccer Hooligans at 5 Guys Burgers

Beckham running to shake Kevin's hand

If you haven’t seen Kevin this week . .that’s a good thing!  He has spent everyday working in the Emergency Room (8 shifts in 9 days), so for your sakes, I hope you haven’t seen him.  He says he’s feeling great, and I think he is still on a “galaxy high.”  Round 4 chemo coming up on Monday, May 23rd.  “Go Yondalis!!”