Counting down the days!

We are entering the last two days of Kevin's radiation treatment.  Last week was a tough one, he crashed harder and more frequently, and relied primarily on shakes, as all food upset his stomach. We are now at the point where dinner time is, "what would you like me to fix you for dinner ...that you won't be able to eat?"  He suggested a couple of weeks ago that I not cook, as he feels horrible when he can't eat.   He still can manage chicken pot pie, and depending upon the moment, there's a slight chance he can manage a few bites of shepherd's pie.  Shakes, green tea and the occasional soup are just about it right now.  He's developed the dreaded mouth sores, which makes it hard to talk, and his saliva has become like rope in his moth. Meh has a number of agents he uses religiously to counter these, and the help dramatically, but don't alleviate.

If this were me, I would be moaning, writhing, and loudly imploring death to COME GET THY CHILD!  Kevin has taken to sitting quietly, not reading, not watching tv, or listening to music, but just being.  I haven't entirely made my peace with this stillness; I no longer think he is plotting to leave me, or imagining himself dead; But I still can't entirely wrap my head around the thought that people really can find contentment in this process, but I trust that he is.

Yesterday he sat outside, all day, quietly watching me garden.  While I love being in and doing in the garden, I never imagined it as a spectator sport.  With each of us having larger cars in the garage it's suddenly more challenging to navigate our cars in and out of the garage because his truck is parked in the driveway.  The logical next step is an area for the truck.  I have a garden next to the driveway that has never come together.  It's mostly lilies with odds and ends of annuals. Kevin suggested using that space, and asked if  I wanted the plants transplanted elsewhere.  I flicked my hand and airily said let the boys at it, I'm over it.  ( the boys who will come and do the heavy lifting to create the space)

Apparently, what I meant was, ...except for any green thing that is now,or ever has been growing in the garden, because I suddenly found myself furiously digging away and managed to re-plant most of the garden and incorporate everyone into other gardens, stopping only due to lack of a minors head lamp! (I could have dug all night!)

My point is, he was perfectly content to just sit, and be in the sun,which is all he can do right now, what with one arm still in a sling and healing, and no energy to speak of.  It was very companionate!

Sadly, at the end of the day, even after a long hot soak, he was rubbing tiger balm over my lower back, and we lie in our bed with his and hers matching heating pads; mine from sore muscles, his for warmth (another side effect of treatment is feeling feeling cold all the time.)

I am happy that starting Wednesday, we will be looking for the slow but gradual dissipation of symptoms, and getting back to strength and health.  But as I frequently tell him, I marvel at the places this adventure has taken us.  He has always (since I was 14!) ...even after our baby marriage fell apart, and I was 3000 miles away...been someone I have held in the highest esteem for the person he is, and the impact he had on my life.  He, my beloved man, who does NOT do discomfort, in any way, shape or form, has shown such grace through this, and such GRATITUDE, for something, every single day; for the many friends who have stayed by his side and walked through it with him, for the nano second something tastes good, for the medical teams, for just being alive to greet each day.  He's kept his humor, even on his bad days, and entertains the radiology techs by playing the song, "radioactive" on his phone.

I am grateful to be on this adventure with him.  I am also looking forward to much less adventurous times in the near future!  The grace and blessings continue to pour forth.

Radiation Rock Star

Kevin continues to make the Radiology team smile.  Even tho....he continues to crash on a regular basis, they say this is normal, to be expected, and oh by the way, Kevin is MUCH stronger and has fewer side effects than their other patients, and oh by the way, look at how well his wounds are healing in spite of chemo and radiation.  Last week he developed thrush, but thanks to modern meds, it's all cleared up, and the mouth sores from radiation respond well to Mary's Magic Mouthwash, the hot tip for radiation patients.  This group of medical professionals continue to be his biggest fans, and best cheerleaders, including the radiologist.

His eating is decreasing by the day, because of his deadened taste buds, but June ( the nutritionist) is so supportive and loving; I half expect her to bake a cake for him!  Instead, she loads us up with boxes and boxes of something called Skandi shakes. Blended with 1 cup of milk,they are 560 calories. I add dark cocoa, and sweetener to them, and a couple scoops of whey protein powder to kick it up a notch.  He gags at these as well. How unfair life is; he MUST indulge in these rich,creamy chocolaty high calorie shakes 3 times a day, and it is a struggle!

My kitchen counter is filled with foods that he once considered tasty treats....that will be relegated to the food pantry. I started this adventure with the cookbook, crazy sexy cancer.  It uses food as healing agents; in other words, foods I eat!  That went out the window (metaphorically speaking) even before the taste buds went away!

In spite of everything, he continues to find joy in the moments. I can honestly say, he's doing great.  He's learning to listen to his body and respond to what it needs.  He is napping more, and taking it easy, in spite of a desire to get stuff done.  When he crashes, he doesn't try to push through it,but lets it happen.  We generally go upstairs together, and he goes to sleep if he needs to. He is making friends with his insomnia; when it hits, he uses it as an opportunity to drink another shake, read a bit and sleep some more.

This truly is an amazing adventure, and I am continually amazed at the way Kevin has made peace with it, and has learned to co-exist with it.  I look forward to returning to our normal life, but I am also happy for this opportunity to focus on each other.  

Lend me a Tastebud!

Oh yes; Kevin's taste buds have disappeared.  You would think that would render everything TASTE-LESS; but no, it changes the taste, and everything tastes ... yukky.  Most things.  He was happy to report last night that spaghetti with meat sauce still tasted good.  However, his favorite beef stew from the previous night,?  He could barely gag down 4 bites before calling it quits.  He is SOOOO tired of shakes; it's not that they taste bad... they just are BORING.  At least he's trying. 

I did buy a recommended cookbook called, "1 bite at a time" for cancer patients; sadly, this is primarily food that I would thoroughly enjoy (and plan to use it for me and my ilk...) but I am  not seeing Kevin embrace most of these recipes, whatever the state of his tastebuds.

For all you who insisted I let the man eat potato chips?  In desperation, the nutritionist finally said -- buy them -- he has not touched one.  NOT ONE.  Just.Sayin.!!! 

I have to confess; I would so be embracing my lack of tastebuds!!!!! 

Grace and Blessings

Kevin’s radiation takes place daily, for 15 minutes.  I normally drop him off (or if he is able to drive, he drives himself.)  On Tuesday, after he completes treatment, one of the nurses (Rita or Caroline) meets with him to check him over, discuss any questions or concerns; followed by June, the nutritionist, to make sure he is on track for keeping his weight stable, what eating issues he is having and ideas to combat the problems, and finally, Dr. Hornback, the radiologist.  This is also his chemo day. So Tuesdays, I drive him to radiation, and meet with everyone right along with him, and then drive him to chemo.

I LOVE Dr. Hornback; he is a dedicated professional, and makes himself very accessible to all questions and comments, irrespective of how small, how large.  Today, he is traveling, so we saw his partner, Dr. Mcgrath; just as dedicated, just as accessible.  When we mentioned  the radiation side effects Kevin is experiencing after 3 weeks of very few; the sore mouth, sore throat, thrush,  “crashing”  (Kevin is strong and funny and cute one moment and the next, it’s as though someone turned out all of his light, and sucked out all of his energy.  It is gaining in frequency.  It’s terrifying; so sudden, and so complete)  Dr. McGrath assured us that all of this is COMPLETELY normal, and that in fact, Kevin is ‘WAY ahead of the “curve” in this; is doing extremely well, is extremely strong (all things considered) and he wishes he had 20 patients just like Kevin!  What a gift to hear this! 

He also said, “I knew about Kevin before you knew about us!”  It seems, Dr. Carol Bradford, our surgeon from University of Michigan is a colleague of his, and contacted him about this interesting case in his area, before we were even seen by her, or had a clue we would be dealing with radiation therapy!  (It’s a small world after all… I see a Disney Film coming out of this!!!)

In spite of all of the unknowns, in spite of having to watch Kevin struggle with his side effects, I can’t help but feel like we have a circle of Grace around us… from the beginning, everything was being put in perfect place! 

I want to give “honorable mention” for the Team that is Memorial Radiation Oncology on Day Road.  Caroline and Rita are both Rad/Onc nurses; as different in demeanor and personality as can be but each one is exceptional, and soothing and so full of helpful information; they feel like friends, and not like detached professionals.  June is our Nutritionist who is always always helpful, even by e-mail.  She stocks us up with tasty treats (for Kevin) and great ideas for recipes to try… she  is a wealth of information; supportive and kind with great advice.  And of course, the Radiologist himself, Dr. Hornback.  The front desk staff, Amber and Meredith are both part of the team as well.  Always with big smiles, always ready to help. 

It really DOES take a village.  I am SO grateful for all of the different communities that surround us in prayer, in friendship, in medical expertise and care, and in fun.  There are times of struggle, there are times of fear, but never EVER have I felt that we were alone in this… to all of you who are willing to share our journey, THANK YOU!

Radioactive

April 7, 2014

Kevin begins week 4 of radiation/chemotherapy treatments.  He is half-way through.  He would be the first to say, he is, and has been, incredibly blessed that his side effects have been minimal.  Having said that, he is experiencing more and more side effects; in particular, the extreme fatigue that comes on suddenly and hits hard.  He is learning not to fight it; to go upstairs and snuggle in and let his body sleep and rest.  He is experiencing the mouth sores, and extreme lip dryness.  Finally, his taste buds have been radiated away, and food is no longer desirable or much of a pleasure.  However, keeping his calorie intake to twice “normal,” and keeping weight on is key to his health.  A conundrum. 

Ironically, our older cat, Camilla, has similar issues.  Because she is diabetic, it can be hard to keep weight on her, yet it is imperative.  I spend a great deal of time in pet stores, perusing the food aisle, looking for the highest protein content within the tastiest venue.  (Let me be clear; what I perceive would be the tastiest venue for a cat… I am not doing personal taste testing!).  With each new product I find, she dives in with gusto – best food she’s ever eaten, and please may I have some more… until the bag is almost empty, and I buy a new bag… she eagerly approaches her dish with delight, comes to a screeching halt at the dish and looks up to me as if to say, “WHAT FRESH HELL IS THIS?  What EVER made you think I would eat THIS?” and … walks away.  I add a little canned bit of “delight” to it… which she deigns to sniff at and daintily eat, making sure not a crumb of the offending kibble touches her lips.  I spend far more time enticing my cat to eat than I ever spend on our own meals.

Enter RADIATION.  Now I am ALSO perusing the web for recipes using tasty, calorie dense, high protein food items for KEVIN.  And it’s Camilla Redux.  He approaches the new food eagerly; it’s the best, Oh, please please let’s have this again, SOON!  Until … we do.  I put his tasty treat in front of him, and his lip starts to curl and he gives me the identical look Camilla gives me.  I create wonderous snacks that only a month ago he would DREAM of having, only to have it go untouched now.  Food doesn’t taste good to him; in fact, it simply doesn’t taste.

Kevin is the strongest person I know.  He has spent his lifetime “doing the right thing,” making sure his loved ones are well cared for, and trying his level best to wrap ME up in cotton batting so nothing bad can touch me.  I know this is KILLING him to watch me struggle with this.  For me, the struggle is watching him suffer through the effects.

I am blessed, incredibly blessed, to have friends and family loving and praying us BOTH through this time.  I know my availability has seriously diminished since the onset of treatment.  I am where I need to be right now, and while I am not very accessible for celebrations, fun and frivolity, this is NOT forever.  We will come out the other side of this, strong and whole, and life will return to “normal.”  In the meantime, thank you for checking in, for being a loving support system, and for love, prayers and understanding.  There was a lovely meditation from Henri Nouwen in my email today that resonated with me.  While I am NOT “overcome by sorrow”, this served as another reminder of how important friends and loved ones are; even if we seem to be completely unavailable, you are all the ones that help me find my center, just by knowing you are there!  Many thanks to you all.