Thursday, December 16, 2021
Sunday, November 23, 2014
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.
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.
Tuesday, June 24, 2014
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!!Tuesday, May 27, 2014
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.
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.
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!!
Sunday, April 27, 2014
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.
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.
Wednesday, April 16, 2014
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.
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.
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