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.