Monday, October 31, 2011
He does not realize how weak he has gotten. He is still strong in spirit... but I am the one losing steam. I am the one who sees the pain on his face throughout the day & night. I am the one who sees how much weight he has lost under his baggy clothes (like someone who is starving from the effects of pancreatic cancer.) I am the one who hears him gag on the food he tries to eat. I am the one who puts ointment on that nasty neck burn that keeps draining and changing. I am the one trying to be clever enough to make something he can eat - to no avail.
I miss Mike too. I miss having a glass of wine with him at the end of the day. I miss his boundless energy and stamina. And even though it is very hard, I am glad we get to walk through this hard place together. I was going to say that it was like being with the 80 year old Mike over the weekend, but he will be much more spry and bright-eyed at 80 than this. This is way worse than recovering from surgery in the hospital because the effects drag out 4 times longer. He is more weary. I am more weary. I long for the time when he can put healthy nutrients and fresh food into his body for re-building. Maybe I am down because I can't help very much at this stage... because any food I try to feed him "doesn't work."
Sorry to be Debbie-Downer but I am ready for the turn-around and I don't see it coming. I know this is where faith comes in. I know the Lord is walking with us. I know the Lord is sovereign over even this. I know His plan is good. Thanks for letting me be honest... and down... It is comforting to come to the blog and know that you are praying for us...
Friday, October 28, 2011
We were blessed by the way the staff hung out in the hallway to watch and cheer Mike on. We were blessed that daughter Mallory and best friend Devyn came from Lincoln complete with balloons and party hats. We are relieved to be done.
It was a bit sobering when Nurse Cindy had to pull us aside at the end and remind us that "we will have cell death for two more weeks before regeneration starts" and "the next four weeks are as important for nutrition and rest as these six weeks". Ugh. The last three days of radiation has been so painful that Mike has had tears even trying to eat ice cream through the rest of the day and night. His mouth sores are high on the pain scale. (We take Alleve around the clock and are starting on what they call "miracle mouthwash" which will deaden his mouth sores.) We compared this to finishing Graduate School but still having your thesis to write. Don't get us wrong - we are super duper thankful to be done with these stinkin' radiation treatments. The journey is still very taxing and wearying.
Thank you for riding with us.
Mike has been eye-balling this bell from day one. Today is his day.
Wow. We will truly miss seeing these dear people. We got to be there for each other during a very hard time. (We have some after-parties planned when Mike can eat again!)
During our hospital stay in St. Louis I spend most of my 'waiting' time with you on this blog! But at the UNMC Radiation Center Waiting Room, this piece of needlework has been a huge comfort.
Thursday, October 27, 2011
Wednesday, October 26, 2011
Dr. Zhen and the staff at UNMC say compassionately "That is very bad... but that is normal." The real scary part would be the burn effects on the inside that Mike is feeling.
And in the spirit of Halloween and "dressing up" check out Mike wearing one of the girl's skinny jeans. Really. We were talking about how much weight Mike has lost and the girls handed over a pair of their jeans - and they fit! We thought it was especially funny because after many , many years in military fatigues Mike cannot stand wearing anything tight on his thighs. He walked around the kitchen table while we laughed and realized in spades that Mike is fast approaching his high school wrestling weight of 167.
After treatments this week Mike's mouth is so sore in the evenings that he can only manage ice cream and a protein drink for supper. Poor guy. Tonight he is baking bread for the UNMC staff who have helped him these past six weeks. (He is excited to be able to eat his own bread again.)
Sorry to scare you with the photos... TWO TREATMENTS TO GO!
Tuesday, October 25, 2011
Mike said a good thing is that the pain inside his mouth and throat distracts him from the pain on his neck - and the pain on his neck distracts him from the pain in his mouth. He is a trooper!
A delightful blessing to our week is that Evian and Bella are staying with us all week. Andrew was out of town, and Evian is the photographer for our church's new pictorial directory and is doing photo sittings all week. Evian's presence is amazingly peaceful and comforting and it is a delight having Bella around.
Party at Storz Radiation Center at UNMC Friday, October 28th at 2:30pm! Mike will be crossing this finish line with tired lines on a thin face - but that face will be beaming.
Thursday, October 20, 2011
Mike reminds me that he can manage the treatments and the mask - and the burned exterior skin surfaces - but it is the torched taste buds and swollen throat that make this a struggle. Eating is just plain HARD. We were very disappointed to learn that Mike lost another two pounds today. That is nine pounds since we started with another full week of treatment to go. (To put a little more positive twist on that - ONLY 6 TREATMENTS TO GO!) I would call today the low point for both of us. The rather large one-day weight loss makes me feel like a failure of a caretaker - who can't come up with nutritious high caloric foods "that work". What works one day doesn't go down the next... I feel like I am always encouraging Mike to eat something (because I am)... and remember, favorite foods aren't favorites anymore and sweets almost always turn paste-y in a non-taste bud mouth. It is hard. And trying. And frustrating.
But like I said yesterday - God gives grace - everyday. In the midst of this yucky, icky day we listened to the final chapters of our book Unbroken. Oh my. What a beautiful, amazing finale awaited us. We would like to encourage all of you to read these true life stories of Louis Zamperini and his WWII comrades. It was also fun to see the wonderful new paint colors go on the front of the house - and the painters loved the pizza we treated them to at lunch.
Six treatments to go.
Wednesday, October 19, 2011
This week it was compassion from Dr. Zhen who had one nasty canker sore in his mouth and voiced sympathetically that he wasn't sure he could endure the treatments that his patients weather...
And this week it was the joy of a new grandchild in the family when Buck and Holly had their first child - Harper Francis Blanc - on Monday, October 17th. We were able to go straight from our radiation treatment to see the beautiful, tiny little girl - and it was even more fun to see the wonder in the new parents' eyes.
Holding babies is one of Mike's most comforting activities so it was perfect after his treatment.
Mike reached a low point last night when (I don't know how to say this delicately) his broth and tofu noodles didn't stay in when he tried an avocado chaser. Fortunately we can laugh about it today. (You have to laugh...) Speaking of, regarding his neck I heard him say to Kiley today "Yeah, my neck is getting really burned by this week and the skin kind of broke down in a couple places... you know, like when you are roasting a pig and the skin cracks". It sounds more gross than funny when I type it... But even with this, he said he doesn't have pain. His complaint is with the lack of any working taste buds. I think we will both have a renewed appreciation for the simple pleasure of TASTE. So much to be thankful for...
Tuesday, October 18, 2011
Before radiation was on our radar we bought tickets to see a live performance of A Prairie Home Companion in St. Paul, Minnesota. When Mike wasn't up for the trip, he encouraged me to go and take Hannah with me (who happened to be on fall break). I came home revived for my Cancer Coordinator role and empowered to help keep Mike's weight up. He will recover faster at the end of this if his body does not have to rebuild pounds along with his cellular regeneration.
I feel like I do not have brain space or time to write well right now, but did want to ask for "help" prayers on the diet front. Sending love to everyone out there...
It was special to have Hannah with us for our treatment yesterday and she took a tour of the radiation room before Mike's treatment. I like this photo because you can see a smile on Mike's face even in the mask. No, Hannah's teeth are not being radiated with the eery green light. That is just the laser light that they use to get Mike lined up on the table exactly and correctly.
Monday, October 10, 2011
We just wanted to encourage you faithful pray-ers out there. It is amazing. It is grace.
Sunday, October 9, 2011
It started with massage therapist Tara Currier's wise counsel to focus on healthy high fat foods when she noticed Mike's weight loss. Then on Friday Dr. Zhen's Nurse Cindy gave Mike another mini-lecture on the importance of getting sufficient calorie intake. (She reminds Mike of a Gunnery Sargent - and she is good. ) She has a way of getting the point across in a powerful way. "OK, so how many calories are you getting?" she says in a rough, loud voice. "I'll be happy with 2000 but I would rather it was 2500." She explains that the reason you limit your activities is so you don't exceed your calorie intake and lose weight, while explaining that as much as possible you want to keep living life. She found on Friday that Mike was even a little dehydrated and said if he couldn't keep enough liquid down she could arrange for an IV. She laughed and shared that was one of her 'power tool' lines that tends to keep people eating & drinking. She is stern, but compassionate and regularly says "head & neck radiation is the hardest thing you will ever do".
The diet scene took a good turn over the weekend after a trip to Kvam Family Farm where I purchased farm fresh free-range eggs, local honey, fresh cream and stewing hens. When I told Mark Kvam that I was coming out for some chickens for broth for Mike, he said that he had stewing hens as well. He explained that the birds were older and basically had more good fat in the broth. And boy was he right! This broth was seriously more substantial - and perfect for Mike! Can you see the good layer of yummy fat on the soup? We also realized that Mike can manage eating lightly scrambled eggs now. This makes getting protein into the boy much easier! He wasn't able to tolerate them before so I can only attribute the difference to - prayers. I also purchased some fresh, sweet cream which I add to everything I can. Last night after broth & scrambled eggs I made a dessert drink. Into the blender went ice cream, fresh sweet cream and malt powder. What emerged was a creation that tasted just like our favorite "Sweet Cream Malt" from Cold Stone Creamery. Go figure. We are on to a few good things!
He was away at a Radiation Medical Conference this past week and we were amazed how much we missed his presence at the Med Center. He was back on Friday and shared that he got to see Dr. Wade Thorstad (our St. Louis radiologist). They will be working on some research together and co-authoring a chapter in a book. He said they had some fun banter since Dr. Z told him that "he tried to send us back to him". He also said that he had not seen Dr. Thorstad in four years and didn't know he was bald already. (We could have told him that.) It was heart warming to me when Dr. Zhen commented that it was hard to be away and is hard for him to relax since he is leaving patients during their treatment cycles. "It is not like a surgeon who finishes their work with the surgical procedure. With radiation the care is on-going." He won my confidence another increment with that.
Round 3 Ding-Ding.
Mike's Long Ride comes out strong, ready to fight
And now Cancer Clyde is scared of his bite!
They begin this round, same as the last,
But Mike's mouth is sore from rounds past.
Mike's Long Ride never gives up, and never gives in,
Because it's this dog fight, Mike is sure to win!
This round will be tough, it'll really test his will
But it's Cancer Clyde which Mike is out to kill!
Mike's Long Ride fans are cherrin' so loud,
They are all here, yellin' in the crowd.
"I am crucified with Christ; nevertheless I live; yet not I, but Christ liveth in me: and the life which I now live in the flesh I live by faith in the Son of God, who loved me, and gave himself for me. " Galations 2:20
October 4, 2011 --- Tuesday Morning --- 19 Treatments to go...
Mike's Long Ride is tougher than nails,
Cancer keeps coming back but each time fails!!
Mike can beat cancer, there's no doubt
Yes, Cancer-free is the desired route!
So we cheer loud and strong for Mike's Long Ride,
While we boo and hiss for evil Cancer Clyde.
We cheer until this battle Mike has won,
And Cancer Clyde will turn and run!
"But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall." Malachi 4:2
October 5, 2011 --- Wednesday Morning --- 18 Treatments to go...
The two duke it out , as the fight carries on,
But that Cancer Clyde is an artist of con.
But Mike's Long Ride doesn't take Cancer's guff,
And Mike's proved to us, he's really tough.
Through the rounds, Mike has stood his ground,
With Cancer Clyde they go round and round.
Mike's Long Ride is looking so good and strong
This fight will soon be over, it won't be long!
"Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security." Jeremiah 33:6
October 6, 2011 --- Thursday Morning --- 17 Treatments to go...
A turn for the worse, Cancer Clyde is kickin' butt,
And Mike's Long Ride feels he's in a rut.
As they break to the corners, Mike still can't spit
And his veggie shakes taste like .........*#@**!
His Nazi coach finds a soothing drink to make is mouth froth;
Who would have guessed, it's Japanese Chicken Broth!
This will sustain him and help him through the worst,
Mike will lead this round, yes he will be first!
"Trust in the Lord forever, for the LORD, the LORD himself, is the Rock eternal." Isaiah 26:4
October 7, 2011 --- Friday Morning --- 16 Treatments to go...
Hallelujah! We are ending Round 3!
And we thank God in heaven on bended knee!
Mike's Long Ride is halfway through this match...
He just needs some food to go down the hatch.
He will finish strong and come out the winner
In no time at all, he'll eat a steak dinner!
During this weekend, Mike will enjoy his break,
You may find him 'livin' it up' on a Protein Shake!
Quote from Smith Wigglesworth: "Faith is such a divine establishment of courage in you that courage sweeps you through every condition: You cannot come into the divine order, except on the line of being soaked in the word of God."
He sets up his Bose iPod port and selects the music that will comfort and distract him. He puts in his bottom retainer (which supposedly helps to deflect the radiation coming off his metal filling) and he crawls up on the table. After he is lined up and in position they snap on the mask which holds his head in place (and perfectly still) during the 20 minutes of treatment where radiation beams work the area at risk for cancer cells. I kiss him and tell him how brave he is. I go back to the waiting room and prayer for him... and needlepoint.
We have grown to enjoy our travel time to and from Omaha. Some days we talk most of the way there and back... and some days we enjoy our travel companions, Jane and Lou. Last week we finished the marvelous story of Jane Eyre (Book-On-Tape) and this past week we started Unbroken, the amazing survival stories of Olympic runner and WWII survivor, Louis Zamperini. Mike says that if Louis can survive ship wrecked at sea for 40-some days eating only seagulls, he can survive six weeks of mouth radiation.
We have also enjoyed our waiting room friends, John and Janice Sheehan. They drive everyday from Sioux City for radiation treatments for a non-cancerous tumor on John's brain. We have grown to anticipate crossing paths with them in the waiting room and are sad if we miss them. John and Mike share mask sympathy and daily check up on each other with simple guy banter. It is encouraging to have such healthy looking people in the waiting room with us because quite honestly some of the people in the waiting room look like they don't have the strength to utter even a greeting. We are thankful for these new friends.
Wednesday, October 5, 2011
Sunday, October 2, 2011
Some of the yucky things are: After this week Mike's taste buds took a hit and his mouth continues to get sorer and dryer. This translates to mealtime being a chore and most often uncomfortable. I try to come up with foods that will appeal and deliver a high nutrition value but feel like I have to sit down with a picky toddler who is not interested in eating. I offer a protein malt "if you eat your cheese and edamame." The burns inside his mouth are expected to turn into solid white sores this week. (Sorry for the details.) The doctor tries to prep us for what is coming and it helps to hear him say that this is temporary, that his taste buds will eventually return, and that his right salivary gland will compensate eventually for the loss of the left one.
The photo shows some of the little things we do to try to bring Mike some relief. Kelp is helpful for absorbing free radicals so we are trying Trader Joe's Wasabi Seaweed Snacks. Yum. My wonderful massage therapist (at The Little House Day Spa) made up a special oil for Mike's neck before & after his treatments made from rose hip oil & vitamin e. The radiation does burn his skin on the outside too so a nourishing moisturizer is a must. The doctor recommended a salt water or baking soda rinse to keep Mike's mouth cleansed, so we are using Himalayan sea salt. The fun part is that we bought it in Ireland at Colin Farrell's dad's vitamin store in Dublin. I had been saving it and it seems special to use it for this. All of these "little things" somehow feel a bit comforting and have became part of our daily routine.
Saturday, October 1, 2011
September 22, 2011 --- Thursday Morning --- 27 Treatments to Go...
There once was a guy named Mike
Who loved to ride his bike.
He peddled all the way to the city
For a little radiation-ditty.
Twenty seven treatments to go
But we can have fun, you know...
So as you guessed, this rhyme is not done
I'll be adding to it Until your battle you have won!
September 23, 2011 --- Friday Morning --- 26 Treatments to Go...
One more treatment down and 26 to go
The laser staff you'll really get to know.
We focus on the great things that happened this week,
Like the weather that's been exceptionally sweet.
It's easy for me to say as I go about my day,
"Hang in there, you'll be okay."
The truth is, it's difficult;
Harder than I think.
But remember James 1;
without it you will sink!
Enjoy your weekend, lift your spirits a-new
And come Monday you'll be ready for Round 2
September 26, 2011 --- Monday Morning --- 25 Treatments to Go...
Ding-Ding Round 2
In one corner is the riegning champ, Mike's Long Ride
In the other corner is the contender, Cancer Clyde.
The bell sounds and they dance to the center of the ring.
We know that Mike's gonna whip this Cancer thing.
Cancer throws a blow to the left side
But Mike's right there, no... he won't hide!
Round and round they jab and punch
Mike's gonna win, I have a hunch!
September 27, 2011 --- Tuesday Morning --- 24 Treatments to Go...
Mike's Long Ride wears a mask to protect his head...
Just so Cancer Clyde won't knock him dead.
The mask may be tight, an uncomfortable fit.
But remember it protects from Cancer's evil hit!
So you don't feel good, in fact you feel like crap...
You must get your rest, so go take a nap!
We know for certain that Cancer doesn't stand a chance -
And soon Mike's Long Ride Fans will be doing a happy dance.
"But seek first His kingdom and his righteiousness, and all these things will be given to you as well." Matthew 6:33
September 28th, 2011 --- Wednesday Morning --- 23 Treatments to Go...
Mike's Long Ride and Cancer Clyde go at it some more,
But Mike won't quit - not til Cancer hits the floor!
Cancer thinks that he's "all that"
Mike's here to say "I'm up to bat!"
Mike declares that cancer's done
Mike's gonna it a Grand Slam Home Run!
Mike yells "Get out of here and don't come back!"
"Cancer" he screams "you ain't worth Jack!"
September 29th, 2011 --- Thursday Morning --- 22 Treatments to Go...
Cancer Clyde throws a pretty hard hit,
So Mike heads to the corner to try to spit,
But Cancer Clyde cuts straight to the heart,
Now Mike's mouth is drier than a popcorn fart.
No worries; Mike can handle whatever comes his way,
He'll just keep bottled water with him every day!
Cancer Clde thinks he is sooo very cool,
Especially when Mike can't even drool!
Mike's Long Ride has never for a day felt
That Cancer would win the Championship Belt!
September 30th, 2011 --- Friday Morning --- 21 Treatments to Go...
Well time is ticking; Round 2 is just about done
And Mike's Long Ride, this round, has won!
Cancer Clyde will no doubt come out strong in Round 3;
But Mike's Long Ride will meet him with glee!
We are to 'consider it pure joy for the trials we face'
'Cuz all this testing really strengthens our faith.
So take a deep breath and finish this round strong -
Come Monday you'll be ready when you hear the ding-dong!