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!!”

Poison Bites

I know what my title implies - it totally bites being pumped with poison.  (Yep.  It does)  But did you know that there are 10,000 Emergency Room visits every year in the U.S. due to venomous snake bites?  I read that from part of Kevin’s “Envenomations” lecture that he is presenting tomorrow at the Ogden Medical Conference. You probably didn’t know that Kevin is a self proclaimed snake bite expert.  Kevin received excellent training at Loma Linda Medical Center under the tutelage of Dr. Sean Bush, aka. the Venom ER doc. He endured months of earsplitting squealing from pigs being injected with rattlesnake venom. But enduring the research torture (referring to Kevin, not the pigs) will finally pay off tomorrow at the medical conference. Kevin committed one year ago to be a speaker, and when life recently got in the way, he was still determined to accomplish it.  Not surprising. I personally am grateful that his lecture is over.  I have never seen so many gross pictures of snake bite victims.  I mean these poor people make Kevin’s situation look good. (ha ha)  

Kevin will be home from Utah on Thursday. (We miss him!!) He is feeling pretty good.  Last week (we call it chemo week around here) he really toughed it out & enjoyed some great dad moments. He spent four hours one day watching Josh take first place doubles in tennis league finals.  (Wasn’t that cool that it didn’t sound like boasting - just stating the facts.  If I’d wanted to boast I would have said that it was his finale to an undefeated season.  oops.)  Kevin also toughed it out by roughing it on the beach at the annual fathers and sons campout.  He provided some awesome memories for Josh, Ben, Sam, and my dad, and his sea water corn was apparently a hit.  The fathers and sons campout was also Kevin’s greatest gift to Sophie last week.  By taking the boys camping it left the house “boy free” to celebrate her 14th (wow!) birthday.  And this snake bite extraordinaire even pulled off a special Mother’s Day.  I woke up to a beautiful, big lemon tree with the attached note: “when life hands you lemons, make lemonade.” (definitely another Hegewald motto)  There will be some fresh squeezed lemonade at the Hegewalds this summer!

Since Kevin is in Utah right now, I thought I would post some pictures of our family’s awesome Spring Break to Salt Lake City. (Told you I would find them)  Great times . . .

General Conference at the Conference Center

Josh's big catch on the Green River

Ben's bigger catch on the Green River

Baptisms at the Timpanogos Temple with cousin, Tal

Snowy ski day at Solitude

Josh and Ben with Granddad

Sam and Mom

Cousins warming themselves by the fire

Kevin's favorite position by the fire

Carin Davis' miracle to help us look like this . .

...when we usually look like this!

Great Expectations

"Now, I return to this young fellow. And the communication I have got to make is, that he has great expectations."  Charles Dickens, Great Expectations

I used this quote only because of the significance of the word “expectations” . .I personally found the book dreadfully boring.  (sorry Mom)  Last week, Kevin and I had great expectations.  Unfortunately, you don’t always get what you expect.  In the case of the results of the anticipated bone scan and MRI, we had done our very best to set the lowest expectations.  If anyone asked me about the upcoming progress report, I would give my well rehearsed answer borrowed from the oncologist - “No shrinking is expected to be seen until after 4 or 6 rounds of chemo.  Success will be measured if there is no growth.”  That’s what I would say out loud.  But it was very much like the time I ran my first marathon.  When talking about it with people I would tell them that it was “my first and I was really just hoping to finish it.” Finish it?  I very well knew that if I ran it in under 3 hours and 40 minutes I would qualify for the Boston Marathon, and that was exactly what I intended to do.  So unlike the safe reply that would come out of my mouth concerning Kevin, I have really been thinking - “I so badly want to see shrinking!  Too many people are praying for this - there has to be shrinking.”  In some ways, this was still a safe expectation . . I wasn’t expecting a miracle (yet).  I mean, who can change and learn what they are supposed to learn in only 7 weeks?  We went through 10 months of treatment (chemo, radiation, surgery) last time, and obviously THAT wasn’t long enough to learn what we are supposed to.  So the learning continues.  Kevin’s results showed a little growth. Enough “little” to state that his condition is “stable,” but enough “little” to make his wife “unstable.”  Kevin will continue for two more rounds on Yondalis, before another bone scan and MRI to determine our future path.  I hesitate mentioning this info because it will lead you to expect follow up info.  So here’s my advice:  expect me not to ever post again, and then when I do, it will be nice because it was unexpected.  And unlike the results, some of the nicest things in life are unexpected.  

Kevin got round 3 of chemo yesterday.  He’s turning in the man purse right now and plans to “hunker down” and heal for the next 3 days so he can make it to the Fathers and Sons campout on the beach Friday night.  My mom is here again and this time she brought the handyman with her (thank goodness I’m referring to my dad).  He plans to fix anything that needs fixin’ and when he finishes my list, he will start fixin’ things we didn’t even know needed fixing.  Thank you for all of your prayers.  I still strongly believe that prayers are answered.


My in-house editor has informed me that my advice ("expect me not to ever post again") seems a little "jarring" and "harsh."  What I meant to say was . .Expect me TO post again!!  I love it.  The problem is I love it a lot more if I'm writing positive, uplifting, and humorous (sometimes at the expense of others) information.  And when I can't, well . .I just hate to disappoint.