Moving forward

Kevin is getting stronger every day he is starting to eat solid food, albeit small amounts; his wounds are healing beautiful and his arm is closed up; he is taking very few medications.he continues to tire easily, and his core temperature has dramatically dropped.  ( It 's like living with a greyhound; when the temperature dips below 80, out comes the sweatshirt!). I don't have it in me to insist on air conditioning, so it's open windows and ceiling fans, and yet we are doing okay!

Today I had the pleasure of seeing our favorite Dr.Michelle Migliore.  Just a well woman visit, but always a pleasure to see her.  She is a great combination of physician, mentor, nurturer, friend.  She told me I am amazing in terms of the whole cancer journey, and staying positive.  I said I was raised by a positive mother.  I truly do not feel amazing, but it did make me think about my mother, and how amazing she truly was.  Perhaps when you are nurtured and loved by an amazing parent, it rubs off, and you get to be kinda sorta amazing by default.

I remember my mother making me crazy when I was an adolescent; not just because in adolescence everything adults do is stupid and crazy making..but because whenever I was hurt or angry or broke hearted, instead of wrapping me I her arms and telling me I was right,I was loved,I deserved better..her response was either,"let's look at (his/her) side.." And "let's find something good I this."

My response to the latter was stone- faced refusal,so she would start.  And it would be her tossing out the silly and ridiculous, "it could have been ..." scenarios until she got me laughing, and would eventually lead me to see that it wasn't that dire, and maybe, possibly, there was good in there somewhere.  Worse was when someone made me angry, or hurt my feelings, and she would allow me to vent, but briefly, and then tell her something positive about that same person.  I really hated that,because clearly, the person who had hurt me was vile, with nothing to redeem them.

 I remember riding in the car with her.  I was verging about a friend who had called me fat.  ( I was absolutely not, but as an adolescent, worst thing to say!) This was after I had unthinkingly, and without malice referred to her frizzy hair.  (I was a TEENAGER; tactless but not intentionally mean). My mother first tried to point out that she may have had a reason to want to hurt me.  That went well.  Then she trotted out the "now find something positive to say about her" and I wouldn't even comment.  We rode for miles without a word. She broke the silence by saying "I was noticing Jane's toe.  Her littlest toe...well, not really the toe,but the toenail.  Well,not the whole toenail but the little crescent on the end, and it was almost attractive, don't you agree?" How could I resist this crazy woman who clearly wanted to instill kindness in the face of adversity in me,while also acknowledging my feelings!

No matter what ,she could always break through.  And in spite of,or perhaps because of her outrageous sense of humor, she truly modeled finding the good in all circumstances (oh the stories I could tell!) and genuinely looking for and finding the goodness in all...or at least most, people.

At age 48, my mother developed breast cancer.  I was 22.  She had a mastectomy, and because her lymph nodes were clean,the standard of care was no follow up chemo or radiation. Once she was healed,she took up skydiving, telling me at first she was just going with a friend of mine to watch him and give support.  She talked me into going with them for what turned out to be her solo dive.  Shortly thereafter her cancer recurred in her liver. During that year,she remained as active and vital as she could. She reads Buddhist fable that she took on as her mantra, about a man being chased by a hungry, man-eating tiger.  When he came to the edge of a cliff, it was either jump off or be eaten. He jumped,and on his way down caught and held a slim branch.  However, the branch started to crack and breakaway. He spied a perfectly ripe,red strawberry which he promptly plucked and ate.  This story resonated so thoroughly with her that she bought a necklace with a strawberry pendant.  She was buried wearing it,and the story was read at her funeral when she died 46 months after turning 50.

I miss her - every single day... but what I have come to realize is that she is not TRULY gone; she lives on for me in the faces, spirits, friendship, inspiration and love with the MULTITUDE of amazing and wonderful women, young and old and in between, who have entered my life since the passing of my mother.  Some have come for a brief time for a specific reason;  each and ever time I have had to conquer a challenge or celebrate something wonderful, there has been that one special woman above all others who is sharing it with me... if I close my eyes, I can see this long, long, line of women, past and present (and future!) with my mother at the beginning.  We ARE all truly connected; and given that... I believe my mother lives on in these special and wonderful women in my life....more than you know, if you are reading this, you ARE one of those women, and I am blessed and grateful.

I am not amazing,but perhaps this amazing mother of mine, and her cadre of earth angels, is still nurturing and loving me, and whispering in my ear to find the good in all circumstances, and to find a way to love absolutely everyone.

Life after radiation

This morning, Kevin woke up to the sight of me standing by the bed, in my "Cindy Lou Who" hairdo, and nothing on but a towel.  He needed to get up and ready to go to the Infusion Center for fluids... so while he fought valiantly to ignore me, I burst into "Rise and Shine, and Give God the Glory, Glory" from my old (VERY old... I was in my early 20's!) Sunday School teacher days!  When I got to the second verse (the one about God telling Noah to build an arky, arky...) it did the trick!  I KNOW he was enjoying my sweet serenade... Oh, if only I still had my tambourine to accompany it!

Tuesday was Kevin's last day for radiation, and they surprised him with a celebration, AND let me take part!  What a milestone!  I am sad at the prospect of not seeing these wonderful healing angels on a regular basis, but so happy to know that, slowly, Kevin will be returning to perfect health. Unfortunately it is not instantaneous; no magic wand accompanied the celebration, and we were advised he would have a rough couple of weeks before he starts feeling better.

I have said it before... we have had nothing but the BEST medical practitioners surrounding us, not only with their medical expertise and practice... but SO.MUCH.MORE.  From our family Dr., who has worked behind the scenes to get us to the right people; and who checks up on us to make sure we are doing well (LOVE THIS WOMAN!!) to our ENT who sent us to U of M; to the wonderful surgeons who figured out best practice on  his particular tumor; to the Oncologist, and to the RADIOLOGY TEAM... who truly, truly, surrounded us from the beginning with 'wayyy more than medical expertise; they are the healing angels holding us up when we threaten to fall!

What Kevin is experiencing for now is indeed rough; thick saliva making eating impossible, and causing him to cough and choke when he tries.  He really can't talk, because of the sore throat and mouth sores.  (Which means I get to interpret what he is trying to say, such as this morning: "Kevin, I am intuiting that what you are saying is, wow, what a great performance, THANK YOU!)   I'm becoming adroit at asking him questions that can be answered yes or no, and getting super good at my own sign language, as he still has hearing issues that seem to be exacerbated (possibly) by radiation.  I laugh at him when he responds using hand gestures!  (thank you, my darling, but ... I can hear!)

He's exhausted and frustrated and eating is challenging, and he FIGHTS like a tiger to avoid doing it (eating) but he still has a good attitude....he is kind of amazing like that. He's so grateful.  He pierces my heart.  Kevin has always been a man of few words, and far more expressive with actions than with words... with the rare exceptions of beautifully written emails... (again, I use MY words to talk for him, and that works well!)  Ironically, now that talking is difficult, he uses those few words to express his love and gratitude.

 

People tell me I am amazing... because of all involved with caretaking... and I say, no; there is nothing amazing about it at all.  This is my "Cancer Boy"; the boy I fell in love with at 14; the boy I married at 19; the boy whom I carried in my heart for all the years after our" 'wayyyy-too-young-to marry-marriage fell apart; and the man with whom I am SO BLESSED to be reunited with... I am NOT amazing... just doing MY part to reinforce the message that cancer is just a word, and we will NOT give it any power over our lives!  (Below... here we are in our very first apartment in Charleston, SC... for those not knowing the story, he was in the Navy... I am wearing what used to be his "navy dungarees" the every day apparel for sailors... that... peace loving little hippie chick that I was... I embroidered for him while he was at sea... with anti-war patches, astrology symbols and an ankh symbol... I thought he would be pleased... he was ... NOT!  He pretty much had to tell his Chief that "the dog ate his dungarees" and get new... ahhh well......

Meanwhile, his arm is healing beautifully!  Soon, he will be able to run and jump and play!  And vacuum again!!!  WOOT!  (Oops, did I say that out loud!?).

He sees the radiologist again on the 15th, and we go back up to U of M on the 19th.  So looking forward to good news on all fronts.  Meanwhile, am SO grateful that we are not alone in this,so much love surrounds us!! 

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.