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.
Tuesday, May 27, 2014
Thursday, May 1, 2014
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!!
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!!
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