Is this car equipped with barf bags?

Hegewalds are going on a road trip!  All other Spring Break plans were thrown out the window when Kevin played his “cancer trump card.”  (a cancer trump card always wins)  So off we go to Salt Lake City.  Personally, I think riding in the back of a car for 10 hours feeling nauseous sounds like hell; but that’s kind of the place we’ve been for the past couple of weeks, and I guess Kevin is getting used to it.  Family members offered to fly Kevin up, but he said he was actually looking forward to spending time with our family in the car.  (Nobody offered to fly ME up & I would have for sure accepted it!  Maybe that’s why they didn’t offer . . ) I actually know why Kevin is excited for the drive.  First, we are working on increasing our faith and our faith will definitely be stretched when we turn the wheel over to our almost 16 year old.  Second, he will have 10 hours of our undivided attention with all of us strapped in the car and no where to go so we can hear all about what he has planned for our week in Utah.  Kevin’s Top 5 activities:  1. Go to the Conference Center on Temple Square for a live session to hear our church leaders.  It will be broadcasted (The Church of Jesus Christ of Latter-day Saints General Conference), so tune in and look for us! (I’m just kidding about being able to see us in the crowd of 21,000. .but you can still tune in if you want!) 2. Spend a day fishing with Josh and Ben, and his brothers, fellow rodbenders, on the Green River.  3. Send me and the kids snow skiing. (Hmm...yea, this one is a variation of the “cancer trump card” but it is the “i want to do it, but i can’t do it, so you need to do it”)  4. Spend time visiting, eating, and playing games with our families. 5. Go to a Jazz game.  We haven’t bought tickets yet because my family assures us that someone will probably PAY US to go cheer for the Jazz.  I know what you’re thinking (other than “the Jazz?? really??) . . Kevin’s made a bucket list.  But any one who knows Kevin, and you all do, knows that this is the way he operates.  Time is meant to be filled.  And how awesome it is when you can fill it doing things that you love with the people you love most.  So we’re packing the snow boots, coats, gloves, fishing rods, Lakers shirts (hee hee), church clothes, and most importantly, the barf bags!  

We will see you next week when we return - Friday, April 8th.  Kevin will be going in for his 2nd chemo treatment on Monday, April 11th.  Thank you for your continued prayers - they are felt.

Q & A with Kev

The big question everyone wants to know is: How is your back pain?

It actually feels a little bit better.  I think it feels better simply because I’ve slowed down so much.  

Have you felt any of the effects from the Cyberknife treatments?

No, not yet.  Apparently it takes a couple of weeks to feel the effects.  Hopefully that specific tumor was killed and the bone can begin healing and move off of my nerve.

You went in today for your 2nd cyberknife treatment.  Describe what it’s like for us.

3 words:  Chinese water torture.  Imagine lying on a board with strict instructions not to move while listening to the SAME SONG repeated over and over and over for 60 minutes!

Was it a good song?

All I remember is it was a big band sounding song . .something about “could this be love” . . speaking and singing and then trumpets blaring.  I could sing it for you.

So, that was Friday.  Was today any better?

Yes.  I told Rahmin thank you very much but I brought my own music today, and they let me have a pillow and a blanket.  

Have you started to feel any of the side effects from the chemotherapy?

Well, let me describe my day to you today.  I woke up feeling the way I have been for the past 6 days - a little queasy, a little dizzy, some heartburn that tastes metallic, and definitely a lack of appetite.  For breakfast I just had some juice and half a banana.  So I drove my mom to the airport and went to my cyberknife treatment. 

I need to interject here that not only did I offer to drive Kevin, but so did 3 other friends.  He just said it didn’t make sense because he was going straight to work after the treatment.  (Yes, you read that correctly - “work”)

Back to the story . .

I don’t know what happened during that hour of lying on a board being blasted with radiation, but I didn’t feel right when it was all over.  I was scheduled to work in the ER at noon.  I thought I would buy a little lunch before work to help settle my stomach so I went to this Indian deli that I love.  

I am interjecting again.  I have to say that Indian food would not come to my mind if my stomach was queasy, but Kevin said you just have to go with it - if it sounds good, you go for it.

Back to the story . .

I ordered chicken curry with nahn bread and a mango lassi.  Before I even got my order I found myself in the Indian deli bathroom hurling - hard!!  I went out and sat at the table for a minute to get a grip, and had to run to the bathroom again!!  And all I could think of while I was hurling was,“That must have been a bad banana!” I showed up to work sweaty, panicked, and smelly (sorry, I interjected the last word)  I spent the next 3 hours escaping into the bathroom to hurl!  One time when the bathroom was occupied, I had to run into one of the empty patient’s rooms.  I grabbed the trash can, but the lid flipped open, hit me across the nose, and then closed just in time for me to throw up all over the lid.  By 3:00, the Lord’s tender mercy came and I was able to finish my shift.  

Wow.  That was some bad banana.

Last question.  What do you love the most about your wife?

EVERYTHING!  I wouldn’t change a single thing.

OK, he didn’t really say that.  But that’s because I’m not really interviewing him.  But I promise every detail in this entry is accurate and honest.  You can ask him yourself.  You might find him in the bathroom.

"When did we get so famous?"

Those were the words of my nine year old when the umpteenth goodie was dropped off at our door.  Oh, the amount of love that has entered our home, all wrapped up in baskets, boxes, plates, & tinfoil.  The words “thank you” have never seemed so inadequate.  I wish there were different forms of “thank you” in our language.  One “thank you” could simply mean, “thank you for kindly passing the peas,” and another one could mean, “thank you for noticing that I put on makeup today,” and then there would be a “thank you” that is the ultimate thank you, which means, “thank you for sharing our burden and answering our prayers and being a disciple of Christ.”  That’s the thank you I am talking about.  Thank you for your heart felt and uplifting letters, emails, and texts. Thank you for the homemade soups, chilis, salsas, breads, and baked goods. Thank you for decorating my home with hearts, and plants, and happy flowers like hydrangeas, lilies, daisies, and rhonuculas. Thank you for your thoughtful gifts that bring Kevin comfort - music, movies, books, blankets, and prune juice.  Thank you for your gifts that help ease my burden - gift cards, and note cards, and paper plates; offers to pick up groceries, watch my kids, drive my kids, adopt my kids.  If I don’t respond, please know that your offer was appreciated, and try again!   I just didn’t need anything at that time and I just wouldn’t feel right about putting my kids up for adoption.  A special thank you to my sister, Kim, and her daughter, Rachel, who flew in on Delta’s wings to rescue me from drowning, when I thought it might be physically possible to drown in your own tears.  Fortunately, those heart wrenching, soul sobbing, desperate tears have been replaced with “happy tears.”  When the little boys caught Kevin reading a letter with tears streaming down his face, he quickly explained that these were “happy tears” - tears that fall when touched by the Spirit or the kind words and acts of others. These are really the only tears now that fall freely in the Hegewald home.  And thanks to all of you, they do fall freely.  Last week the happy tears really fell when Kevin opened a letter from our 9 year old niece, Olivia.  Kevin always tries to convince Olivia that he is her favorite Uncle, but Olivia is quick to tell him that that title is held by 2 other Uncles (who couldn’t possibly be more fun, but are definitely seen more often).  The note read:  “ to My favorite uncle Kevin.  Kevin, I hope you fight your canser and I was just kidding about Russ and Ryan.  You know how teasing goes.”  I wonder what it would take for me to become favorite Aunt?  I’ve learned that fame comes with a price.   

Cyberknife

Cyberknife 

Cool title, huh?  And cyberknife is actually as cool as it sounds.  Cyberknife is an intense type of radiation.  The victim, I mean patient, is required to lie still for 45-70 minutes as the radiation machine, with a rotating mechanical arm, blasts the tumor from different angles. (I would be happy to answer any questions that you have about the cyberknife process as I watched an 8 minute informative video on it . . by myself.)  So, tomorrow (Friday, March 25th) Kevin will receive his first treatment, with two more treatments scheduled for Monday and Tuesday. They will be radiating just one spot in his back where there is an infected piece of bone that is right on his nerve. Nothing has proved successful to stopping the pain - a nerve block, pain killers, libroderm patches, etc; so we are really hoping that cyberknife will be the answer to our prayers. I am actually leaving tomorrow to go with 100 middle school kids on an orchestra overnighter . . .not sure who you should feel sorrier for this weekend - Kevin or me!  (Just kidding, Sophie, I am so excited for the adventure, and Kev’s in good hands with his mom, visiting from SLC)

No Mountain Too High

You all know that Kevin LOVES to come up with nicknames, mottos, themes, & battle cries.  A hunting group was named “the hogslayers.” His high school best friends, the “awesome sixsom.”  His Priest Quorum, “my brothers in arms.”  A fly fishing trip with his brothers became “rod benders.” A bike race became “we ride for glory.”  A family code is “C squared” short for “Christian Courage”  and he has been repeatedly heard yelling, “eye of the tiger!” “fire in the hole” “comin’ in hot” and “mitgefuhl!” (German for “carefully”) 

So, it only seems appropriate that he already has a battle cry for this next battle:  “No mountain too high.”  Kevin loves the mountains!  He loves skiing down them, and biking through them, and scaling and climbing them - the harder, the higher, the better!  I don’t know which he likes more -  the going up or the coming down, but I do know that he feels closer to God when he is in them.   I’m not much of a nature girl, but trying to throw my support behind Kevin I said, “Let’s do this.  No mountains tall enough.”  I was kindly corrected.  I’ll get it right one day.

A Pain in the Back

That’s how it started.  A pain in the back.  On February 15th, Kevin was in terrible back pain as he left to drive the 10 hours solo to Utah and spend three awesome days skiing with our family.  The back pain was throbbing, stabbing, hot, and relentless.  Convinced that it was kidney stones, Kevin ordered a CT and was surprised when the results were negative.  Kevin continued to work through the pain - unable to sleep, unable to sit, unable to stand.  One night while at work, Kevin admitted himself, gave himself an iv, and a shot of toradol to get through the rest of the night.  (I will attach a copy of Kevin’s work schedule for those of you who would like to avoid the nights he is on shift).  By now the pain was localized to one spot in his back and Kevin thought it was most likely a disk problem.  Kevin went in for a MRI on Wednesday, March 9th.  The MRI showed spots on his spine. Two days of testing confirmed the worst.  A biopsy of a swollen lymph node near his groin confirmed that it was malignant peripheral nerve sheath tumor cells - the same type of cancer Kevin battled in 2003.  The results of a PET scan (received Monday, March 14th) showed spots all over - his shoulder, ribs, spine, pelvis, and legs.  

Plan of Attack

On Wednesday, March 16th, we met with Dr. Eckhart, the orthopedic surgeon who removed Kevin’s tumor in September, 2003.  The poor guy couldn’t remember who the heck Kevin was as his chart was long gone!  (7 years cancer free!)  Within 5 minutes, Dr. Eckhart was on the phone with the UCLA oncologist, Dr. Sant Chawla, who prescribed the chemotherapy for Kevin in 2003 - 2004.  We showed up to his office scared and left more scared.

YONDALIS.  That’s the name of the chemotherapy drug Dr. Chawla recommended.  It is a clinical drug, not FDA approved, but in phase 3, and offered in only 3 locations in the United States - Los Angeles being one of them.  Another new drug on the scene is Zometa - a bone strengthening drug that they give to 85 year old women with osteoporosis.  After meeting with Kevin’s local oncologist in Irvine, Dr. Merry Tetif, we agreed to follow Dr. Chawla’s recommendation.  Kevin had a porticath inserted on Friday, March 18th.  All ready to go.

Master Healer

With a plan and our competent medical team now on board, it was time to turn our desires to the Master Healer.  When faced with a challenge, the Cannon solution is always a family fast.  I truly can not express the experience we had this past weekend as family members and loved ones all across the country fasted and prayed on Kevin’s behalf.  After a Priesthood blessing was given to Kevin, a tangible difference was felt in our home as our fear was replaced with faith and hope.  Benjamin’s journal sums it up perfectly:  “I hope our fasting will heal my Dad or I will just be starving.”

The Man Purse

Real men wear purses.  Kevin’s a man.  Monday, March 21st, Kevin received his first cycle of chemotherapy.  That morning we drove up to Santa Monica to Dr. Chawla’s office and were given the VIP black leather chairs.  After a few hours of fluids and monitoring, Kevin was sent home with the good stuff attached (good stuff = Yondalis) for a 24 hour drip.  Tuesday morning we drove back up to Dr. Chawla’s to remove and return the pump, and receive his first infusion of Zometa.  Now Kevin is left alone for 3 weeks to battle nausea, dizziness, fatigue and constipation. (tmi?) His next chemo cycle will be in 3 weeks on April 11th and 12th, with a MRI 3 weeks later to show the success of the drugs.

We will know a lot more at this time (in 6 weeks)- what we are dealing with - if they are fast growing, aggressive cells, or slow growing cells that might have been there for awhile. If the MRI results show the cancer shrinking (which is what we are praying for), then we will continue with the same protocol - Yondalis every three weeks, with a MRI every six weeks to chart progress.  And we will do this for as long as it takes.  This is definitely more like Mount Everest than Mount Shasta.  (See, I’m beginning to know the difference.)