With cancer...it's always something!

As Roseanne Rosannadanna used to say, "it's always something!"  Cancer just isn't a one and done.  It's vigilance and follow-ups and scans, and holding your breath, and trying not to panic.  It's also grace and blessing and gratitude; for the wonderful and amazing medical community that is our team...and for knowing we have all the right people and resources.  (Besides, of course the family and friends surrounding us!)

There are, however, definite differences in communications styles.  There is the scary smart nurse at U of M who uses the "don't buy any long play records" approach. My favorite example of how this plays out is when we were planning for Kevin's surgery.  She told me to call if I had any questions.  I did, to discuss a 10 to 12 hour surgery on a patient with COPD; what systems are in place to keep him alive under anesthesia for this length of time, and she said, "surgery has risks, and I can't give you any guarantees."  😗 She eventually answered my question after I was scraped off the ceiling!  

Our South Bend team, particularly Radiation Oncology, uses the "mother's on the roof" approach, much more effective.  Our Family Medicine Dr. Is in a class by herself.  She is like having  our own Mary Poppins, more Julie Andrews than PL Travers...but truly she's magic.  She is also scary smart, knows exactly to whom to refer, and is able to make appointments with specialists happen in the twinkling of an eye, and is a fierce warrior woman for her patients.  She's an incredible support system!

Having said that, we've had quite the excitement stemming from Kevin's first post-treatment CT scan in September, ordered by the Oncologist.  He was very pleased with the results, pronounced Kevin to be in remission, but with a teeny tiny little something-something that was nothing to worry about, and there would be an MRI in a couple months, but no anticipation of anything.  Then at our appt with U of M, that month, they determined all scans should be up there, so cancel the MRI.  Shortly after that appointment,  "don't buy any long play records" nurse called Kevin to let him know his CT scan from the Oncologist showed a spot of CONCERN on his lung, so they were ordering a CT and MRI up there in November.  We followed up with the radiologist here, who reassured us that this was very minor, too small to be of concern, could be anything, and while they would watch it, it just wasn't all that. (mother is on the roof, but she's stable, and we will get her down safely)

It was a different story in Michigan.  Our lovely and brilliant surgeon was kind, yet direct, that there was a spot on his lung on the MRI, (ct not yet read at this point) and both the MRI and the CT would be referred to the Pulmonary team, who would most likely perform a thoracotomy.  BOOM! And oh by the way, have a nice day, see you back in 2 months.

Not a happy trip home.  And we had gone up on Sunday, as his first scan was at 5:30 am Monday, and I was getting sick...ear, nose throat, chest with fever and chills.  Monday I got an appt to see our family practice dr, and brought Kevin with me because I knew she would enjoy seeing him.  Well, she did, mostly because she had gotten the reports from Michigan, and wasn't entirely convinced, and countered with her own CT reports from 2009 to present, showing the same lung nodule, which has been stable from the beginning.  And overall, was supportive, loving and made our world feel a little more sane.

Scary nurse responded, calling to say, nice try but no cigar, different nodule.  Back to standing on one foot.  Finally on Friday she called to say the Pulmonary team reviewed the scans, did not believe this was significant, and most likely scar tissue from a lung infection.  It felt good to exhale!

Grace and blessing, and a village to hold us up, and all in time for Thanksgiving, when we will be blessed with friends around our table in our own home, giving thanks for sooo much.

Waiting To Exhale

Waiting to exhale….

Kevin completed his treatments at the end of April, when we learned that the 2-3 weeks following would be THE WORST EVER in terms of side effects.  The doctors weren’t wrong.  I truly thought the man would simply fade away, as getting food into him was a daily challenge, he had no energy, and most of the time, thought he was going to die… because he felt like … he was going to die. 

After 3 weeks, almost MAGICALLY, he started to eat!  His physical symptoms faded, he was BACK!  Well, almost.  I actually expected him to simply open his eyes, say, “Wow.  That sucked!” and have his full energy back, get into his “wow, I am retired, and look at all the things I can do NOW!” mode.  That didn’t happen.  He became almost reclusive; (well, compared to me… but compared to me, I suppose MOST people would appear reclusive!)  He seemed to fold in on himself.  Most of his days were spent reading, and most of his evenings, he seemed withdrawn, distracted…

I of course immediately went to MY default place of “ABANDONMENT!”   I didn’t realize it at first, until I started catastrophizing about … well, most people.  (for example, if the mailman was 15 minutes late, I was on the phone to the FBI to report a kidnapping…)  Maybe I wasn’t that bad… but people that are far away were definitely in my sights, and when I didn’t IMMEDIATELY hear back from a note or a text… I started imagining the worst… some I acted upon; some I did not (you do not know who you are, but unless you live right next door to me, just thank your lucky stars that my darkest fears stayed in my head!!!)  My abandonment issues helped Kevin … a LOT!  Okay… maybe not so much!!

I eventually got over myself (somewhat) and thought about what Kevin could POSSIBLY (maybe) be going through… such as… he retired 3 years ago, and 6 months later, went back as a consultant… was off for another 6 months or so… maybe longer, and went back as a consultant again, this time overseeing the entire revamping of the IT system at Cook Nuclear Power Plant, which meant the 9 months prior to his surgery, working 6 NIGHTS per week, 13 hours per night!  We lived for telephone calls and that 10 minutes every morning when we were both awake and upright!  When most people were awake, Kevin was sleeping, or driving to or from work …. Or working.  He had no life.  His last day at that was Friday; the following Tuesday morning, he was wheeled into surgery.  We had a week in the hospital, and then home to begin his recovery.  His life revolved around his wounds, and his recovery process.  Then he went into treatment; 6 weeks worth of daily radiation, weekly chemotherapy, and weekly hydration, with lymphedema massage therapy and the errant visit with the ENT to drain his lymphocyst.

As previously reported, he tolerated his treatment at the high end of the spectrum, but having said that, it was six weeks of mostly feeling exhausted, nauseous, or at best, not horrible.  Then the end of treatment came, followed by more hydration and more lymphedema massage.  And then… everything stopped.  He no longer felt crappy, he no longer had anyplace he had to be, or had to go.  Where do you BEGIN re-entry after all of that!

So… his re-entry means easing into it slowly… learning how to socialize, figuring out what lie ahead.  It’s hard to imagine… I remember how I felt after 2 weeks immersed in  Israel… it took at least a month before my life made sense; I can’t imagine what this must seem like to Kevin!  I think it’s going to take awhile before he is comfortable with much socializing.  He is still far from healed; he is still dealing with radiation effects that make talking uncomfortable; he is still dealing with impaired hearing that we are assured is just leftover fluid and swelling from surgery, but no one has presented a plan… and while he may be ‘way ahead of the curve for the reanimation of his facial nerve, it’s been almost 5 months, and he knows he has a ways to go.  As people aren’t his strong suit anyway… it’s just easier for him to just go inward, and process the way an introvert processes.

I’ve stopped sounding the alarm if my friends and family are not immediately responsive.  The FBI is happy that I am no longer calling them to report missing persons…and I’ve almost stopped staring at Kevin as though he will disappear in a blink of an eye.

My own re-entry is starting to come…I am slowly entering back into a social life…partly for me, and partly for Kevin, so he has some breathing space where I am not staring at him, expecting him to disappear in a puff of smoke.

Underlying all of it … is the world of “what if.”  What if there are cancer cells still lurking, and as soon as we breathe out – they will strike.  When his Oncologist recently had Kevin undergo CT scans… there it was… the “what if” that we both avoided saying, but could see in each others’ eyes.  Perhaps we held each other a little more closely… held each other’s hand a little more frequently…and did our best to lift each other up.  Faith has kept us strong, and didn’t let us down… but there was still that slight breath of fear in spite of it.

Today… we saw the Oncologist for the results.  With a beaming smile, he said, “YOU ARE OFFICIALLY IN REMISSION!”  Not a single cell awry; clean as a whistle.  He went into great depth, reassuring us at every turn.  And you could hear the exhalation for miles!!!  He is IN REMISSION!  Thanks Be To God!!

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.

  

All is well... today!

Blessing and Grace… I have certainly seen both in this “True and Amazing Adventure with Cancer”.    Tomorrow marks 2 months since his surgery date!  We saw his facial nerve surgeon on Monday.  She was absolutely thrilled with how well his forearm is healing (FINALLY!)  As he was speaking to him about his arm, she became VERY excited about his face when she noticed both sides animating!  She stopped, and put him through various facial exercises, and both sides of his face (albeit the left weaker than the right) were animated.  She was laughing and smiling and told us he is 3 months ahead of schedule for the facial nerve to start animating!  Then when Kevin told her about the shooting pains he gets along the nerve from time time… that confirmed it; his new nerve is definitely working toward WORKING! 

She had NOT scheduled a meeting with the physical therapist, but given how ahead of schedule he is, pulled her in and gave her time to work with him.  Right now, we are not scheduled to go back up to Michigan until May 19!  

As for the radiation therapy and chemo, he’s really doing well.  Some of the symptoms he was told about with radiation are starting; his saliva is thickening, and swallowing is more challenging…but other than that, he seems to be tolerating it well.  The chemo is weekly, a 3 hour infusion of chemo agent, with another couple of hours of hydration.  He hasn’t had much nausea, he hasn’t lost his hair (Thank you, Lord; the man has the most gorgeous hair!!!) but he has found that every week, by Thursday, he starts to experience fatigue, and anxiety.  Friday, by end of day, he says it’s like someone just pulled the plug and he is absolutely done; it comes on suddenly, and can also be combined with the anxiety.  We get him into bed, and he sleeps through Saturday morning, feeling much better, and with full appetite!

He discussed this with the radiology nurse, who asked the obvious question:  Are you taking your anti-anxiety meds (Ativan)?   (No.)  The reason being, the drug is billed as “anti-nausea and anti-anxiety.”  Since he wasn’t nauseous… the nurse said, with a straight face, “Well, it’s anti-nausea because it will put you to sleep, and then you won’t be nauseated anymore.”  Good point!  He promised to start taking it!

He is making Chemo Friends!  They are all there together, going through the same thing… it was at that point I suggested he do Facebook.  For awhile now, when I take my Ipad to bed and check Facebook, and he’s snuggled up next to me reading all the posts.  I knew it was time… so I launched him!  Now the second I go to sleep, he’s on my Ipad checking his facebook!  Very cute.  I sent him some pictures (since I am keeper of all the photos!) so he can post them!!  (I tried tagging them and they reposted on MY facebook!  When Old People try to Facebook!!!)

We are still surrounded by the Grace and Blessing of friends and family…primarily in assisting with driving back and forth to doctor appointments, radiation and chemo.  I take him in the morning and drop him off; on Tuesday I stay while he gets radiation, then take him to chemo.  There is always a wonderful friend on the other end picking him up.

He retired the Friday before his Tuesday surgery…!  What a way to enter retirement!  But in spite of the medical treatments, I think he’s enjoying his retirement; albeit he will enjoy it far more when he can DRIVE! 

There are scary times.  When he loses all of his energy and is feeling anxious, I would do anything there is to make him well; at the same time, I know that this is FAR easier than we anticipated, and I
am grateful.  So many have it far worse!


Our friend, Amanda Cragen, who moved to Boston to go to grad school, and then to NYC came into town on her way to her niece’s birthday in Martinsville, IN.  She stayed longer than usual for love and support… that was fantastic

As the song says, we get by with a little help from our friends!

Cancer: It truly IS a small world (after all)

It IS a small world, and I am finding you can throw a rock in any direction and hit a cancer survivor, or someone whose life has been touched by it.  A department head here at ND asked for a meeting with me ( new federal regulations deal with a part of my job that interfaces with his department).  He pushed for an 8am meeting, and I had to push for later (because of driving Kevin to his a.m. appointments); finally, so as not to appear as either a slacker or simply uncooperative, I said that on Friday mornings at 8am, I was dropping my husband off for radiation treatments, so given driving distance and parking at Notre Dame, even 8:30 was a stretch, and could we please push it to later.  He immediately offered up 9:30.  He began our meeting today asking questions about Kevin’s cancer and treatment, and shared that his wife was 1 year out from her cancer treatment, is in remission and doing well.  She is the mother of 3 children; the youngest 18 months when she was diagnosed.  We talked a lot about what it
was like for them, and he was so kind in asking me how it was going for me. WOW.  MUCH easier, I am certain, for me than for ANYONE who has children; particularly small children.

I was 23 when my mother died of breast cancer, which recurred in her liver.  We had about a year from the time of that diagnosis until her death.  As her younger daughter, it was ALLLLLLL about ME, and my pain, and my losing my mother (she and my sister and I were extremely close); but now, as my friends’ children (particularly daughters) who have reached that age, I watch my friends, and I see my mother… with a NEW appreciation for what she faced; leaving her daughters, (me in particular.  My sister was settled, married, children, and happy in her life; I was in flux in so many areas (also known as, "a hot mess!") and emotionally utterly dependent upon her.)  God granted her His amazing Grace, and, possibly some “insider information,” that against all apparent odds, I would be fine, and in fact, would flourish.  I hope so.  I can't imagine anything worse than leaving a child in those circumstances through no fault of your own.

Today, I see much Grace, and many blessings in our situation.  Kevin has had 1 chemo treatment, and 2 radiation treatments; so far, no side effects, and he feels confident about these 6 weeks of treatment.  His chemo agent is Cisplatin, mid-range between horrible nasty-bad side effects, and no side effects at all.  His dosage is in the lower mid-range, so there is certainly reason to believe he may not be horribly impacted by this. 

He recently saw the ENT who did his initial surgery that sent him to the U of M, who was very impressed at his level of healing, indicating Kevin has a strong immune system.

We are surrounded by wonderful friends and neighbors who are so supportive and kind, and willing to give their time and energy to making our lives easier.   Even our cats are stepping up; Camilla, our older kitty, sticks close to Kevin, and our “baby kitten,“ Priscilla, (feral cat who believes that, other than me, everyone is a dangerous stranger, including Kevin) is starting to stay close by him as well, chirping and gerbiling to him, and even allowing him to pet her.  (Kitty Healing Magic.)

We have a nutritionist with great advice on the care and feeding of Kevin during radiation, when his taste buds may crash, and he may lose his appetite completely, and in any case, probably won’t want to eat.  Thanks to family members and friends, I have received a good range of recipes; most of which I've been test-driving on Kevin to make sure he likes them; all have been given the thumbs up.  I’m doing a lot of cooking ahead now so I can make sure he is well supplied with mini-meals and snacks that are high protein, high fat and  high calories.  Seems so counter-intuitive to my normal cooking, but I have it on GREAT authority that this is what will get him through!  (And will be a damned shame if he DOES lose his appetite, because believe me, he will never pass THIS way again!!!)

It truly is a rather amazing adventure.  It's not one I ever envisioned, or one I particularly wanted, but one which is daily infused with Grace and Blessing when I remember to ask -- and look for it.

 

 

Being the Grace... Being the Blessing...

Today my fervent prayer continues to be…"let me see the Grace and blessing in this situation…"  The response resounding in my head (and also a quote from Rocky Horror Picture Show) … is, “Don’t just dream it… BE IT!”  I thought it was tricky business just to SEE the grace and blessing… but BEING the grace and blessing… that’s where the going really gets tough.

We are venturing into unknown territory; the territory of Radiation and Chemotherapy; radiation 5 days a week; chemo 1 day a week.  Adding to this is Kevin’s seroma that continues to fill up where his drain used to be, and has filled up so much that radiation is post-phoned until it can be drained; coincidentally by the FIRST ENT that started us on this magical mystery tour of cancer.  His radiology staff was able to bump up his appointment with the ENT up to a day earlier; suggesting that he get on the ENT appointment schedule for weekly visits until the seroma goes away.  (Note:  I will definitely be asking serious questions about THIS little post-surgery gift when we go back up to U of M on the 24^th…)

So…. besides Kevin’s physical discomfort, and the disconcertion of so much unknown; what will radiation therapy be like for him, and what side effects will he experience, he has to put off the radiation for two days. 

Sunday, I spent the day cooking foods high in protein and calories that were also somewhat bland, yet nutritionally sound.  We’ve been warned; once the radiation kicks in, as well as the chemo, he won’t feel like eating, and yet has to consume about 3 times the normal amount of calories.  Like our beloved Camilla kitty (and apparently, all cats)… when he doesn’t feel like eating… he simply doesn’t.  Having had MUCH experience trying to convince Camilla that she has to eat, tempting her with every single sort of tasty treat I can think of, I do not relish going through this with Kevin.  (For example, I frequently pry open Camilla’s jaws and force tidbits into her mouth to get her taste buds up and running…I tremble at the thought of trying that on Kevin!!)

This morning, between running and bathing, I packed a “to go” bag for Kevin to take with him to chemo (6 hours.)  I packed 3 different kinds of cheese, sliced, with a variety of crackers, some turkey sticks, some cheddar cauliflower muffins, some high-protein, homemade oatmeal bars (made with applesauce, mashed bananas, almond milk, a mixture of sprouted pepitas, sunflower seeds, raisins, dried cranberries, and carob chips,) some chocolate tofu pudding, a small plate and flatware, and a napkin.  I reflected upon all of the things my sister used to do daily for her husband when he was stricken with ALS (9 years total) – with a MUCH different understanding today than I had then.  These tasks now seem like such a BLESSING for me to have the opportunity to do, now that it is MY precious husband who cannot do them (would not do them) for himself.

Some days, he breaks my heart when he expresses his view that I have “given up” so much to take care of him; or taken on so many “burdens” to take care of him… neither of those things are true.  I do not honestly believe I have “given up” anything.  I frequently make choices to stay home versus time with friends – because that is what my sense of self-care is directing me to do.  And, there are times I DO go to be with friends, for the same reason.  I am NOT a martyr (as anyone who knows me well knows!  I haven’t been called a “princess” most of my life for nothing!!) – but providing my husband with the elements of comfort I CAN – is definitely a gift I give to myself.  Seeing Kevin in discomfort is absolutely the hardest part of this journey.  Except when it’s the second hardest part.  (Conversely, while he breaks my heart giving me TOO much credit; there are moments, albeit very few, when I get NO credit, which also breaks my heart!)  (Obviously I have a contrary nature, I just can’t be pleased!!!)

I know in my head, that he and I have a very different approach to life.  I am a physical person; I LIVE in my body; I have great CONFIDENCE in my body and all of its amazing abilities.  I don’t get sick very much at all, and even when the random and odd physical ailments have led to surgeries, I have had every confidence that I would be up and running sooner rather than later. 

Kevin is a HEAD person; he can do quantum theories in his head; he loves to spend hours with his computer, loves solving issues and problems that require extreme mental concentration.  When his body is out of whack, he has no context to understanding how quickly one can and will heal.  So having a disease that is currently informing MOST of his life… is very far out of his comfort zone.  It is taking him away from doing the things he loves best; one of which is “taking care of” me/us.

If life were art... I would be painting abstract pictures of vivid colors and shapes and swirls and splotches; Kevin would be doing finely drawn pen and ink.

In the interest of full disclosure, I think there is a part of me (and possibly not a small part) that subconsciously hasn’t fully accepted that piece of his disease...that his focus and energy has to be on healing, and as an introvert, as my introverted friends have pointed out, that often means he needs to go deep within.  Scientific evidence says men’s corpus callosum is smaller than women’s, consequently, men can’t think and feel at the same time (distilling the difference to a simple form)… so…he is spending a great deal of time deeply inward and thinking it all through, which makes him appear less emotional accessible.

In MY head, I am super-woman; I can do it all – I can do all of the extra physical chores needing to be done (I can) and still carry the bulk of the emotional part of the relationship… until I can’t.  And that’s when my life feels off-kilter, and I start feeling like my world is out of control.  And I “MIGHT” be taking it out on him; and I MIGHT be trying to completely deny his need for going deep inside, to FOCUS ON ME… which may be what the message I opened with means.  Being the grace and being the blessing in this situation may simply mean allowing Kevin to go where he needs to go right now, deep inside where he can process what is happening to him in his own way and his own time; letting him be safe in doing that while I rely on my OWN resources; inner and outer.

Don’t just dream it… be it!

Doing the Chemo Dance

I was going to title this:  The Chemo Dance, doing the dance of death… but thought that title might be off-putting and giving the wrong idea!

Recap:  The day of Kevin’s surgery at the University of Michigan, Dr. Bradford, the primary surgeon, talked to me immediately following her part in the surgery.  I know that stress causes memory problems; I know that my brain continues to simply stop for short moments, and my memory bank is not what it once was.  But in ALL  matters of all things “Kevin’s Cancer”, I have the sensitivity of a hunting dog, poised for every single nuance, word, facial expression, or body language; I am acutely aware of all that is said, left unsaid, and intimated by an expression or an eyebrow lift… so … I know EXACTLY what she said to me.

 She said she was able to get clear margins with the tumor (excellent news), but that one of the dissected lymph nodes was suspicious; but we wouldn’t know for certain until the path report returned. Even so, she felt confident there was lymph node involvement.  When I asked what this meant; she responded, “We will be more aggressive.”  When I asked what that meant, she said, “Chemotherapy.”  She then said, “There is a clinical study on the combination of chemo and radiation that I would like to put him on if it is in your area.”  Period.  Full Stop.

At our follow-up visit on February 24, she confirmed that out of 38 dissected lymph nodes, 4 were found with tumor.  (We already knew this from our radiologist.)  She went on to say, she wanted him on the clinical study which treats with radiation concurrent with chemotherapy, IF IT WAS AVAILABLE IN OUR AREA.  When I asked, what if it is not, she said she would not sanction any other chemotherapy, and when asked why not, she said there was “no definitive evidence” that this made an impact on recurrent disease vs radiation alone.  The “I will not sanction…”troubled me, but until we knew whether or not this was an issue…I let it be.

Thinking perhaps this was an insurance issue; that, if our surgeon didn’t give her approval, coverage would be denied, Kevin contacted his insurance company, and found them extremely supportive. saying it was NOT a procedure that required pre-certification, and even if it did, they would look at the recommendation of the oncologist if it was differing from the surgeon.

Back in South Bend, we learned the study is not open in our area.  Both our radiologist and our oncologist believe chemo is definitely indicated.  Our radiologist suggested that he have a conversation with Dr. Bradford after he consulted with our oncologist.  We agreed; but, after our conversation yesterday with our oncologist (who stated that while he fully supports this study, the reason combining chemotherapy with radiation isn’t considered the “standard of care”, it is only because a clinical study has not been done previously, providing evidence that is should be.  However, he has been (administering the chemo in patients with this type of tumor, in combination with radiation, and the results in his practice have been a 50% less rate of recurrence.  SOLD!

To be perfectly honest, I spent 11 years working in a Clinical Cancer Center for a gyn oncologist who was a dedicated researcher, and who developed multiple protocols that became clinical studies, and went on to become first and second line treatments for gynecologic cancers.

 A clinical study is usually randomized, and blind; there is no guarantee that the Human Subject will get drug or a placebo.  I love science, I am grateful for all of those who have gone before and were willing to do this.  Frankly, I am just not ready to see Kevin donate his body to science, so I am perfectly happy knowing he is not part of a clinical study.  I remember well the Greys Anatomy story when the blind clinical study Meredith was conducting on Alzheimers, and the Chief’s wife was in that study.  He BEGGED Meredith to find out whether or not Adele was getting drug or placebo, and when it was found that she was assigned placebo, he begged Meredith to switch her file, and she did.  I got it then; but I REALLY get it now!

He will be having radiation therapy daily for 15 minutes for 6 weeks; weekly, he will then go to the Infusion Center at the Hematology Oncology center, and will undergo cisplatin infusion for 3 hours, followed by another 3 hours of infusion of “medication”.  I will be attending the one hour information session on Tuesday so will be much smarter about this at that time.  Cisplatin is a “mid-range” drug as far as side effects go.  It’s not free and easy as some are, nor is it the worst.  He will “most likely” lose his gorgeous, thick hair (but it will grow back!) and will probably experience some degree of nausea and possibly vomiting, but there are drugs to ease that.

Our oncologist also explained to Kevin the difference in staging the tumor found in an organ, or in other head and neck areas, and a gland.  MUCH less scary.  Once again, he confirmed that this is TREATABLE.

After carrying these questions around in my head for awhile, the relief to  finally have a course of action that feels “right” has lifted my spirits.

What IS that STRANGE sensation in my body?  OH!  I believe it is called “appetite”!  Who knew stress could kill that!

 

 

The Patron Saint of Caregivers

Who is the patron saint of caregivers?  I know that St. Rita is the patron saint of women who take care of women (not to dis St. Rita, but that's a fairly narrow category, and I don't know how flexible she is). I know of her because Kevin gave me a statue of her, along with a card outlining who she was and what she does.  I like that he knows this, and I love that he sees me as fitting into that category!  But now I want a patron saint who is a generalist.  (I nominate my mother, and perhaps she could round up a few of her heavenly cronies, and create a consortium of patron saints of caregivers...)

Yesterday was challenging.  I was coming out of one of the most stressful work weeks imaginable, and even after a fabulous evening with my friend, I was still carrying it.  Kevin is clearly struggling with the limitations of a 1 armed man, so much so that in spite of the result of his vacuuming and snowblowing, or I should say, even though after those two activities last week, we landed inAnn Arbor with his extremely swollen hand, and a wound not as healed sati should be, and wound care stepped up to 3 times daily,and a strong warning NOT to use it, Kevin still wants  to do the things he has always done so I do not have to do it all.  I get that, but iris FAR more stressful for me when he wants to ignore medical advice, and becomes difficult when I JUST SAY NO.

Combine that with errand running.  Typically we do a lot of that together(with him driving; a significant difference!). These days,whIle I truly don't mind the added responsibilities, "for the cause"' my challenge becomes balancing social activities with down time where I can be alone.  Sometimes, just being alone in my car, doing errands and listening to my audiobook is that time. Yesterday, Kevin  needed to run an errand, which meant he could accompany me, or...I could do mine and he could...walk 6 miles in the snow both ways...so I of course I
"Graciously" allowed he could come with me.  ( it MAY have been my graciousness that set the tone for the rest of the day...)

Clearly Kevin did not get the memo.
1.  I may be directionally impaired, but when driving in my own neighborhood, to places I drive to on a regular basis, please do not navigate.

2.  Unless there is every indication that I am going to careen out of control and slam into another driver, a pedestrian, a wall or anyone or thing else, it's just not necessary to scream "watch out!" At full volume.

3.  Along those lines, unless I pull out a book and start to read, it is not necessary to shout, "GO! GO! GO!" When the light turns green.

4.  If I leave the road, and go sailing through private yards or farmer's fields, then AND ONLY THEN or under similar circumstances , is it appropriate to scream, "where are you going!?!"  Refer to 1, relax and enjoy the ride.

5.   I am not new to parking lots, been to that rodeo before.  I can tell the difference between an empty spot, an occupied spot and the road.  Again, no need to navigate.

I may have tried to ditch him in the grocery store.  Okay.  I may have ditched him in the grocery store, but I did go back and get him well before I checked out.(of the store)

Once home, he had the sense God gave a goose to go up to his den and close the door after putting away the groceries. ( if I can just interject, why is it the things they CAN do to help us without causing harm to them are not really something they want to do?). I cleaned the house, vacuumed up and downstairs, did 3 loads of laundry and cooked ahead, AND had lovely diviner on the table before 7pm.  I certainly felt 100% better! Apparently, so did he,.  While waiting for the new season to start, we have been watching old West Wing episodes, and enjoying them every bit as much as when they were new.  We were fine by that point, laughing and enjoying each other as usual...but I could still use that Patron Saint; as Scarlett O'Hara said, tomorrow is another day.

Updates from visit with U of M

We went back up to see Dr. Kim, facial nerve surgeon , and Dr. Bradford, primary surgeon.  She removed a couple of stitches from Kevin's eye that did not dissolve, which gave him relief.  She is pleased with his face, (me too!).  She changed his wound care on his left arm from zero form to wet to dry, but now changing it 3 times daily.  His swelling has gone down...we are to take photos and send to her in two weeks.

Dr. Bradford treated his giant suddenly appearing out of nowhere bulge in his neck, ( the one that secretly had me out on a ledge that my friend Emily got the privilege of talking me down from". It was a zero a, at the place where his last drain was removed, and filling up with blood and fluid.  She drained it.

She went over the path report with us.  He will begin radiology in two weeks, and she confessed that she was very impressed with our radiologist in South Bend. We are also!  There is a clinical trial which we will go on using chemo in addition to radiation, but only if it is available in our area.  To date, there is no definitive evidence that chemo combined with radiation is more effective, hence the clinical trial.

Other than that, our visit was uneventful this time, but we did get to see our favorite resident from the hospital team!  She is darling and bright and extremely good.  We had a lot of fun with the teams when we were in house, and it's fun to see them.

We will see both radiologist and oncologist next week.  The radiology team is amazing.  The nurse is just an earth angel who radiates love and positive energy, and is hugs and prayers and white light.  The scheduler is adorable, bright and funny and does roller derby, which you would never guess.  Kevin is in EXCELLENT hands! The radiologist is very accessible, gives time and attention to the myriad questions I bring.  Kevin talked to the nutritionist by telephone, and enjoyed her humor.

I suspect this part of the journey will be another set of challenges, but as I said, we have a great team getting us through it.

And we have our loving, supportive friends and family.  All will be well,

Care Giving

I have a friend who is a cancer survivor; 2 very aggressive types.  She recently told me  how special caregivers are... and while, I don't at all diminish the role we play.... right now, (today.  Tomorrow may be different...) I don't feel particularly special.

Today... I look at my husband, and I am grateful, oh so grateful, to have him with me.  He stresses over how "much" I have to do for him....and for us (extra housework, wound care, prepare special meals....)  Today, I don't feel like I am doing "EVERYTHING".  He does what he can to help, which is actually a lot... He prepares the coffee at night for the next day when I get up at 5am to prepare for running... he empties the dishwasher... he tidies... he picks up... he does what he can...

But mostly, what he does, is reach into the depths of his soul to make a connection with me, to let me know he is still that man, who loves me, cherishes me, and wants me by his side.  And at night, when we are snuggled in, each reading, and there is just the quiet glow of the light from our bed, enough light to read by... I know to the depths of my soul (and I tell him every morning, and every night), I asked to be shown the blessing and the grace in each moment of this journey.  And what I know is, EVEN WHEN it's hard... I wouldn't be anywhere else, and I am grateful to be the one to take his hand and walk through this valley of the shadow with him.

That doesn't mean that there won't be days... or longer... that I walk through my OWN valley of the shadow, when I will feel weak and scared and lost... but I don't feel like my piece in this is MORE diffiult than his!  It's different.  When we married, we were 50-somethings, and certainly knew a whole lot more of what better and worse could entail, as well as sickness and in health.... it's part of the package!

I know, from watching my sister, that there are times that make you soul weary when you are a caregiver.... but she never EVER gave up.  And while she hated the disease, she certainly loved the man, and she went through harder times than I can imagine.... I hope through it all, I can always keep finding the blessing and the grace.  I suspect as long as I am willing to seek it out, I will.

At home

Coming home was pure joy.  We were sad to leave our people behind, the wonderful resident teams, our lovely, loving nurses, but there's truly no place like home, and in our case, home is where the cats are!  Thanks to the incredible Kelsey Collins, cat sitter extraordinaire, all was extremely well.

After about 10 minutes, I realized that, while Kevin was home, he was definitely having adjustment issues.  An extreme introvert, he isn't forthcoming about his feelings most days ( which makes it all the more precious when he does). My point of context was..myself.  When I am ill, or post surgery, I pretty much take over the room.  Whether it's  excruciating pain or the slightest discomfort, or just ennui, I consider it a public service announcement to verbally assess my situation.  Consequently, this completely inward with the tiniest touch of grouchy makes me extremely nervous.  I sat beside him, "honey, are you thinking of leaving me?"  ( of course not!) (well, I guess practically speaking, that wasn't an option!). The next day, I asked him if he was considering suicide.  (He was NOT).  I told him he didn't seem happy.  (No, he was not).  This was very hard, to watch this amazing person go so deeply into himself.  I called my sister, who was caregiver to her husband who battled ALS for 9 years.  She was wonderful, and didn't tell me how crazy I was being.  It was a hard first week, but under my sisters guidance I learned not to jump in to help, or try to fix things until he asked.  I stopped ( for the most part) making it about me.  We aren't big Valentine's day people but always exchanged cards.  I couldn't do hallmark, that felt too inadequate, so I wrote in his journal that I had made him.  He totally surprised me with a card from him and one from the girls.(!)

Both his card and the message he wrote told me everything I needed to know, and it was like a damn burst and all of my pent up emotions gushed out.  It was a huge turning point for us, and put us back on track.  Shortly after that we had our first evening out with friends, and I saw my husband animated, and laughing.  We have much of our normal routine and closeness.  He still has times when he goes deep within,or gets frustrated with his limitations, but I no longer fear he is planning to do away with himself, or me. ( note: I didn't truly deeply think either of those things, but thought it best to check!  I am sure we will have more than a few challenges ahead, but I am confident of a happy outcome.  I thank God for FAMILY and FRIENDS who have given us such love and support!  And food...and wine!  I especially thank my friends who give me wine!

Dark night of the ...eye

We were excited  to go back to Ann Arbor for Kevin's first follow-up with the facial nerve surgeon, he seemed to be going well overall, and it was a chance to make sure we were doing okay with wound care.  Got to see one of the residents on our team (who was still miffed that Tiffany was our favorite!) .  Dr. Kim said it was time to put a sliver of platinum under his left eyelid, to assist in closing , as there was some residual life in the facial nerve, but it would weaken, and it takes 6 months to a year for the transplanted nerve to kick in.  12 shots of lidocaine later, and what seemed like 100 stitches, we were sent away to return in 2 weeks to see both surgeons.  AFTER discussing the fact that we had a 4 hour drive ahead of us.  There were no written instructions given, other than, any concerns, page the resident.  (This was a Friday).  About an hour into the drive, Kevin became restless and extremely quiet.  Then he started getting testy, leading to surley.  Two hours in, I seriously did NOT recognize this person. It's not that Kevin doesn't ever get cranky, but this was, "throw Kevin from the car" and drive away fast cranky.

When we finally pulled into the driveway, and I turned to say something wicked horrid to him, I realized his left eye was almost swollen shut and purple, and gushing tears and blood,and he finally said he was in excruciating pain. I got him inside, afraid he was going into shock as he was chilled and shaky.  I paged the resident who was helpful; the fact was, he had been given no pain meds for when the Lidocaine wore off, being in that much pain would make it harder, so he suggested cutting the time between doses in half until the pain was under control.  6 hours later wasn't 't much better,and 6 hours after that, his eye was still gushing tears with blood in them and pain control still not optimal.  Hardest thing EVER.

Later that morning, our friend, Lester Hans, came over to replace our thermostat as our original one had gone rogue, and was self- adjusting without consulting us.  I had taken Kevin to buy a new one, but he couldn't replace it one handed.  God bless Lester, who saved the day!  I thought he described Kevin perfectly when he told his wife Patty that Kevin's face looked like it had been bitch - slapped with a shovel.  He didn't start to feel okay until the following week.  Note to self, never travel to Ann Arbor sans pain meds!

Home

Coming home was wonderful, but presented a few challenges.  The first day back, we experienced a snowstorm!  So much for the incredible amount of shoveling out our wonderful kitty sitter did.  My one armed man ( left arm in splint from surgery done on forearm) was convinced he could do the snow shoveling!  I very much thought NOT!  I bundled up in his snow gear, and not only shoveled out the driveway and the path to the mailbox, but also Doug through the mound of I've -covered snow surrounding our mailbox.

Kevin thought I would love to learn to use the snowblower.  I envisioned a polite, portable number, but NO...he showed up with a monster blower bigger than my car!  I'll take the shovel!

Ed a polite, portable little number; instead, he shoed up wit

In hospital

First post-op day, extremely stressful for Kevin, morphine pump, high level of discomfort.  I spent the night in his room so he always had someone to  assist him. 

Day 2 was much better.  They switched out the morphine for OxyContin, and he started has to tolerate small amounts of liquid, and small amounts of soft food.

It has been confirmed that Kevin will definitely undergo radiation; Depending upon the pathology results, he may also get chemotherapy as well.  There is a clinical study that is hoped will be available in South Bend.  Once again, his case is being presented at tumor board.

In addition to 2 nurses and a physical therapist, we have 3 teams of residents, and 3 attending physicians making rounds throughout each day.  The nurses are involving me in all aspects of his care, including bathing him. I can't say enough about the care he is getting, and how generous everyone is in their concern for me as well.  The nurses brought a recliner into the room so I could stay there comfortably, and have brought me heated blankets in the night. 

Everyone is pleased at how quickly he is progressing, especially me!  We have done walk around the Unit (with him using a walker, and me pushing the IV pole) with another scheduled walk .

Our days were extremely busy with a myriad of tasks Kevin needs assistance with.  The care is great, love the entire team, and the regularity with which the nurses are here.  My cell coverage is spotty in our room, so I don't have a lot of communication with the outside world, but at the same time, my focus is on giving Kevin the assistance and attention he needs.

         

Kevin was discharged on day 6 ...soooo happy to go home!

Experiencing the throne of Grace

Once we shared the news about Kevin's surgery, we were surrounded by love, support and prayer throughout the country; my sister alone recruited 37 faithful to pray for us.  I knew we were well supported, but what I experienced throughout the day of surgery can only be described as a Divine Mystical.  Throughout the day, I received many loving telephone calls, texts, emails and Facebook messages.  Clearly, there was a community of faith surrounding me.  

As the surgical finish line continued to be pushed back, the love, support and prayer network became stronger and there were more and more people joining in.  However, when I announced on Facebook that we were looking at midnight, there was a veritable explosion!  9 states, and too many prayers to count!  My sister and her group were going strong, one after another friend reported I that their home group was now praying for us; another had their evening church prayer service dedicated to us, a yoga group had set the intention of love and healing for us, texts of prayer and healing love and support coming in fast and furious, emails... There was so much healing love and light that I leaned back, shut my eyes and was filled with the vision of a dark night sky with stars exploding onto the canvas, filling the sky, one after another, and I FELT, rather than heard, a voice saying, each of these stars is a prayer...I couldn't speak, I had no words, I could only be still, and know, that I was standing before the throne of Grace, and I was safe.

At 10:15 Dr. Jennifer Kim strolled out to find us, very very pleased with the surgical outcome.  Finally, this piece was behind us, all was well, let the healing begin, and a THANKS BE TO GOD!

Surgery day

This should be entitled "the longest day" as it was slated as an 8 to 10 hour surgery.  The thought of being 4 hours from anyone familiar if catastrophe struck was daunting, but my friend Patty Hans surprised me by  announcing her plan to come with me!  That was a gift beyond anything I could ask.  

We arrived at the hospital at 5:30 am.  The day started out auspiciously; first when they whisked Kevin and I back to preop, and my phone inside my purse suddenly belted out Mary Chapen Carpenter, "why walk when you can fly"' a song once very special to me.  The preop nurse told me that her son was a "graduate" of Dr. Bradford; he'd had the same surgery she was performing on Kevin today. That was 10 years ago, and he is doing well today.  The anesthesiology resident arrived wearing a USC surgical cap, alma mater of my friend, Emily's.  After I put him through his paces as to exactly how he would keep my COPD husband alive under anesthesia for 8 to 10 hours, and what systems did he have in place if his plan failed.  He was a rock star with all good answers, so I told him he could take my husband out to play. I learned he did his undergrad and med school at USC, and had applied to UCI (where I previously worked as an Anesthesiology coordinator) but ended up at U of M.  

All too soon, they whisked Kevin off to the OR, leaving me with a light up, vibrating disc that would alert me to come to surgical reception where I would get updates about every 2 hours, mostly consisting of, "everything is proceeding as scheduled."  I received those messages at 9:30, 11:30, and then 20 minutes later, I received another alert.  This time, the message was, "we 're going to put you in a room so the doctor can talk to you, and if you have someone here with you, you may want to go get them."  My heart was in my throat as Patty and I waited for Dr. Bradford ( expecting to tell me Kevin was dead...) She strolled in with a huge smile, telling me the surgery went extremely well, got clean margins, and altho the tumor was wrapped around the facial nerve as suspected, the auditory nerve was clean, and the ear canal was spared.  She did lymph node dissection on 35 nodes, and found one suspicious, which, if it turns out malignant would mean adding chemo to the mix.  She reassured me that Kevin was "rock solid". I thanked her, she hugged me and back we went.

All was uneventful for the next few hours until I was paged to surgical reception, but they didn't know why, until a crabby faced woman materialized, and in a serious tone suggested I get whoever was there with me, and she would take us to a private room.  Once again, Patty and I waited. I started feeling as tho I was nor Patty away from meltdown.  This time, Dr. El Kashlan came in with a huge smile, very happy that the auditory nerve was clean, and explained that he did have to clean out tumor from the mandible, which was why Kevin would be receiving radiology.  He said he had a bit more to do, and then Dr. Kim would come in to remove nerve, fat and tissue from his forearm, and reconstruct his facial nerve and fill in his face with fat and tissue and create a flap over all, and her part would take 4 to 6 hours.  He projected her end time to be 5:15.  

Just when we thought the end was near...the pages started coming.  

Dr. Kim thinks she will finish at 7:15...
Dr. Kim thinks she will finish by 9:15...
And when we got to, Dr. Kim thinks she will be finished by 12:15 (am)...I started to lose it, in spite of the fact that the O.R. Nurse and the O.R. Tech were reassuring me that Kevin was fine and holding steady