Sunday, September 30, 2007
Stories, Books and Life--September 07
September 2007...The bookshelves are dusty. Kevin's side of the bed has a Harry Potter book beside it. My side has a stack of Harry Potter books--uncharacteristically, Kevin has read much faster than me. The same reading material is prominent near each of our computers--a thick, stapled stack of pages printed from the National Cancer Institute website. After some disagreement among his doctors, Kevin is struggling with the issue of chemotherapy/radiation. The difference in how we approach these decisions can be seen in our reading. Same stapled stack of papers by each of our computers. Mine is worn and dog earred with a few pages falling out from frequent reference. Kevin's has water marks on it from using it as a coaster for drinks and, more telling, his rosary sitting on top of the stack. His rosary looks worn, the papers do not.
Things We Didn't Know, Part II
We've been working on our counter-attack.
The one we're mounting against the side effects of chemotherapy.
Maybe it's more of a defense system.
There are a lot of things that medicine can do now to treat the side effects of chemotherapy and make life more bearable for patients. Our thought, though, is that every medicine he puts in his body comes with some baggage. A side effect of its own.
We want to avoid extra baggage for Kevin as much as possible. He's got enough of a load already with this whole thing. So we are hoping to minimize the impact of side effects as much as we can before resorting to more medication.
Strangely there have been no guidelines at all from the oncology clinic. Not so strange, I guess, given what we've observed about communication there.
So we've been reading on our own and talking to our dietician friend. She participated in a study with chemotherapy patients so she's been an incredible resource about diet and supplements.
Kevin has begun taking (we cleared this through his oncologist) a supplement called glutamine which has shown some indication of helping against the nerve damage from one of his chemotherapy drugs. There are also some indications that it helps against developing mouth sores. It's a powder he mixes with water and chugs down 3 times a day. The nice thing about glutamine is that it comes with no baggage of its own. No side effects that it causes although it's a thick grainy mixture which Kevin finds he has to chug down all at once in order to be able to tolerate it.
This chemotherapy is known for causing mouth sores. I sent Kevin off to his dentist soon after he was diagnosed. The dentist provided toothpaste, toothbrush and mouth rinse specifically geared to help protect his mouth against these sores.
Kev is drinking a lot of water and will be especially careful to drink 3 to 4 liters a day during the week of chemotherapy. This will help to flush the drugs through his system faster; minimizing some of the cell damage side effects and possible damage to his kidneys.
We're following a neutropenic diet which will help him avoid things that might cause him to become sick as his immune system becomes weaker from chemotherapy. Essentially he eats no uncooked foods, no dried fruits, no yogurt, certain cheeses are out, eggs have to be fully cooked...things which are more likely than other foods to harbor bacteria. We'll be avoiding buffet restaurants and generally being more careful about how his food is handled.
We've stocked up on individual size containers of applesauce and juices and fruit. These can be consumed totally so nothing sits in the refrigerator; plus the Oxaliplatin also causes a cold sensitivity so cold foods will be off the list at some point. Kevin will try to eat a snack mid-morning and mid-afternoon to help minimize the nausea that might be worse on an empty stomach.
Pretty simple things really. And they make sense once you think about how chemotherapy works in the body. I'm thankful that we've had the reference tools (love the internet) and Sue the dietician to help give Kevin this advantage. I feel like we've already got an edge in keeping him healthy.
The one we're mounting against the side effects of chemotherapy.
Maybe it's more of a defense system.
There are a lot of things that medicine can do now to treat the side effects of chemotherapy and make life more bearable for patients. Our thought, though, is that every medicine he puts in his body comes with some baggage. A side effect of its own.
We want to avoid extra baggage for Kevin as much as possible. He's got enough of a load already with this whole thing. So we are hoping to minimize the impact of side effects as much as we can before resorting to more medication.
Strangely there have been no guidelines at all from the oncology clinic. Not so strange, I guess, given what we've observed about communication there.
So we've been reading on our own and talking to our dietician friend. She participated in a study with chemotherapy patients so she's been an incredible resource about diet and supplements.
Kevin has begun taking (we cleared this through his oncologist) a supplement called glutamine which has shown some indication of helping against the nerve damage from one of his chemotherapy drugs. There are also some indications that it helps against developing mouth sores. It's a powder he mixes with water and chugs down 3 times a day. The nice thing about glutamine is that it comes with no baggage of its own. No side effects that it causes although it's a thick grainy mixture which Kevin finds he has to chug down all at once in order to be able to tolerate it.
This chemotherapy is known for causing mouth sores. I sent Kevin off to his dentist soon after he was diagnosed. The dentist provided toothpaste, toothbrush and mouth rinse specifically geared to help protect his mouth against these sores.
Kev is drinking a lot of water and will be especially careful to drink 3 to 4 liters a day during the week of chemotherapy. This will help to flush the drugs through his system faster; minimizing some of the cell damage side effects and possible damage to his kidneys.
We're following a neutropenic diet which will help him avoid things that might cause him to become sick as his immune system becomes weaker from chemotherapy. Essentially he eats no uncooked foods, no dried fruits, no yogurt, certain cheeses are out, eggs have to be fully cooked...things which are more likely than other foods to harbor bacteria. We'll be avoiding buffet restaurants and generally being more careful about how his food is handled.
We've stocked up on individual size containers of applesauce and juices and fruit. These can be consumed totally so nothing sits in the refrigerator; plus the Oxaliplatin also causes a cold sensitivity so cold foods will be off the list at some point. Kevin will try to eat a snack mid-morning and mid-afternoon to help minimize the nausea that might be worse on an empty stomach.
Pretty simple things really. And they make sense once you think about how chemotherapy works in the body. I'm thankful that we've had the reference tools (love the internet) and Sue the dietician to help give Kevin this advantage. I feel like we've already got an edge in keeping him healthy.
Saturday, September 29, 2007
Thanks from the Madwoman Within
I haven't really had a change of heart about my Madwoman Rant in last month's blog posts. Some valves need to be released before they blow the whole thing through the ceiling. I worry, though, that it's a little like a school conference session. The people who need to hear it, don't show and the people who do hear it think it's about them when it's not.
So I just want to say that if you've been reading this blog regularly chances are you aren't one of the faces etched vividly in my Madwoman mind as a Dead Dogger, IG&D or Death Sentence Sobber. Even if you've shared a story with us about your dead gerbil, your Aunt Cleo or the neighbor's sitter's second cousin's nephew. Some things are felt deeply in our hearts, with our minds engaged, and those things aren't what set off the Madwoman Within.
If you're reading this, you have stayed in touch with us, supported us in one or several of a dozen different ways, been here with us.
So thank you. Heartfelt and deeply. Thank you.
Sometimes it's the little things from unexpected places that really touch me. Valorie at church was one this week. Valorie is a personality. She is enthusiastic with a wicked humor which I enjoy very much. She says what she thinks even when she doesn't say it. She hugs people. I suspect she has her own Madwoman within and recognizes--embraces--mine. So it means a lot to me that Valorie knows I am not necessarily a hugger and she acknowledges that when we meet, along with letting me know we are, not hugging aside, ever in her and Dave's prayers. She doesn't hug me, but she sometimes tells me she would if she didn't know I might not like it.
I appreciate that sentiment at least as much as Kevin appreciates that she does hug him.
The Madwoman within me especially thanks the God for the Valories I encounter along the way.
So I just want to say that if you've been reading this blog regularly chances are you aren't one of the faces etched vividly in my Madwoman mind as a Dead Dogger, IG&D or Death Sentence Sobber. Even if you've shared a story with us about your dead gerbil, your Aunt Cleo or the neighbor's sitter's second cousin's nephew. Some things are felt deeply in our hearts, with our minds engaged, and those things aren't what set off the Madwoman Within.
If you're reading this, you have stayed in touch with us, supported us in one or several of a dozen different ways, been here with us.
So thank you. Heartfelt and deeply. Thank you.
Sometimes it's the little things from unexpected places that really touch me. Valorie at church was one this week. Valorie is a personality. She is enthusiastic with a wicked humor which I enjoy very much. She says what she thinks even when she doesn't say it. She hugs people. I suspect she has her own Madwoman within and recognizes--embraces--mine. So it means a lot to me that Valorie knows I am not necessarily a hugger and she acknowledges that when we meet, along with letting me know we are, not hugging aside, ever in her and Dave's prayers. She doesn't hug me, but she sometimes tells me she would if she didn't know I might not like it.
I appreciate that sentiment at least as much as Kevin appreciates that she does hug him.
The Madwoman within me especially thanks the God for the Valories I encounter along the way.
Thursday, September 27, 2007
Have a Safety Pin in Your Pocket
I talked to the oncologist in Ohio today.
I had a lot of questions about what Kevin's treatment would look like over there, how they do things, what she thinks of his prognosis, how she would handle hisneeds, his concerns, her experience and training... just a lot of questions.
Kevin and I sent an email to the oncology coordinator there at the Ohio clinic who passed our email along to the doctor. She called today as she was driving in to the clinic.
I am impressed that she took the time to call herself. Kevin wasn't home just then so we arranged things so that he could call back on her cell phone later in the day. In the meantime she answered a lot of my questions.
It was clear she had reviewed his case before we talked. And when I told her some of the specific questions Kevin had, she further prepared those answers before he called her back.
I'm impressed. This is the sort of care I want for him. Answers to our questions, explanations in real terms--neither blowing us off with dumbed down answers nor talking so scientifically we can't begin to comprehend.
She listened and she responded to him and his needs.
We were both impressed with the answers she provided us. They weren't always the answers we wanted to hear, but they were well based answers that made sense with what we already knew.
Two things stick with me.
One, she confirmed what we believed--Kevin's cancer is a Stage II cancer. A Stage IIa to be more precise. Not a Stage III as the nurse practitioner told us.
The prognosis for a Stage IIa rectal cancer patient is much better than for a Stage III patient.
Two, she is willing to take on his treatment care later in the game if need be. She understands why we are in Lafayette right now and she's willing to begin treating him in Ohio at any time if our situation changes.
There are options. Options are good. Another aspect of my Assbackward Optimism. Always have a fallback plan.
Dr. Skinner and Boyd Cancer Center are the safety pin in my cancer plan pocket.
I had a lot of questions about what Kevin's treatment would look like over there, how they do things, what she thinks of his prognosis, how she would handle hisneeds, his concerns, her experience and training... just a lot of questions.
Kevin and I sent an email to the oncology coordinator there at the Ohio clinic who passed our email along to the doctor. She called today as she was driving in to the clinic.
I am impressed that she took the time to call herself. Kevin wasn't home just then so we arranged things so that he could call back on her cell phone later in the day. In the meantime she answered a lot of my questions.
It was clear she had reviewed his case before we talked. And when I told her some of the specific questions Kevin had, she further prepared those answers before he called her back.
I'm impressed. This is the sort of care I want for him. Answers to our questions, explanations in real terms--neither blowing us off with dumbed down answers nor talking so scientifically we can't begin to comprehend.
She listened and she responded to him and his needs.
We were both impressed with the answers she provided us. They weren't always the answers we wanted to hear, but they were well based answers that made sense with what we already knew.
Two things stick with me.
One, she confirmed what we believed--Kevin's cancer is a Stage II cancer. A Stage IIa to be more precise. Not a Stage III as the nurse practitioner told us.
The prognosis for a Stage IIa rectal cancer patient is much better than for a Stage III patient.
Two, she is willing to take on his treatment care later in the game if need be. She understands why we are in Lafayette right now and she's willing to begin treating him in Ohio at any time if our situation changes.
There are options. Options are good. Another aspect of my Assbackward Optimism. Always have a fallback plan.
Dr. Skinner and Boyd Cancer Center are the safety pin in my cancer plan pocket.
Wednesday, September 26, 2007
Always Read the Fine Print
"Where to do this--Indiana or Ohio--is a complicated decision for us. Kevin works in another state so we have to weigh that in our planning. We need to know an average treatment day. what treatment is going to look like--how long could he be here for a treatment, what other appointments will there be--excluding possible complications--how often will he need to come to the clinic..."
I don't know how to be more explicit. Twice we asked our questions, each of us with a pencil poised over a notebook where we recorded the answers. We asked for the straightforward answers, no sugar coat, no trickle effect. Just lay it out so we can sort it into a rough plan. (I like a plan; we've established that fact.)
Kevin and I walked out of 2 appointments with the impression that he would have a 3 1/2 hour treatment, go back in 2 days to have the pump removed and see the inside of the clinic again in 12 days for the cycle to repeat. Given the way we asked about scheduling, we guessed he would see the doctor for ongoing evaluation on treatment days.
Today the mailman delivered a schedule from the clinic. The 3 1/2 hour treatments have morphed to 5 hours. Every other treatment week he will go back on Thursday for an injection. Each week off treatment brings a check-up with the doctor or nurse practitioner. He went from the expected 8 appointments for these first 2 cycles to 14.
Kevin is tired of it already, he's dreading it all and this is just one more kick. He thought he had planned as much as possible to accomodate work and health realities and now the clinic has upped its side of the demand.
So now we are rearranging plans for help in the daycare so I can go to appointments with him and travel plans to and from his work in Ohio.
There are definite communication problems between us and the oncology office. I don't know if it's as simple as not using the same terms or if we truly are not being heard. What I've learned from this is to be more explicit. And then say it back. Twice. Use diagrams if necessary.
And read the fine print. I don't know where this information was in the fine print but we had to have missed it somewhere.
I knew being on the customer side of a medical transaction was not going to equate to being "always right"--there are so many things here that are new to our life. Things we don't know enough about, don't like, didn't choose and have to come to terms with as simply being what they are. I can accept that readily. What I didn't expect--and can't accept--is this premise that having cancer should make Kevin blind, deaf and dumb on matters of his own care.
I don't know how to be more explicit. Twice we asked our questions, each of us with a pencil poised over a notebook where we recorded the answers. We asked for the straightforward answers, no sugar coat, no trickle effect. Just lay it out so we can sort it into a rough plan. (I like a plan; we've established that fact.)
Kevin and I walked out of 2 appointments with the impression that he would have a 3 1/2 hour treatment, go back in 2 days to have the pump removed and see the inside of the clinic again in 12 days for the cycle to repeat. Given the way we asked about scheduling, we guessed he would see the doctor for ongoing evaluation on treatment days.
Today the mailman delivered a schedule from the clinic. The 3 1/2 hour treatments have morphed to 5 hours. Every other treatment week he will go back on Thursday for an injection. Each week off treatment brings a check-up with the doctor or nurse practitioner. He went from the expected 8 appointments for these first 2 cycles to 14.
Kevin is tired of it already, he's dreading it all and this is just one more kick. He thought he had planned as much as possible to accomodate work and health realities and now the clinic has upped its side of the demand.
So now we are rearranging plans for help in the daycare so I can go to appointments with him and travel plans to and from his work in Ohio.
There are definite communication problems between us and the oncology office. I don't know if it's as simple as not using the same terms or if we truly are not being heard. What I've learned from this is to be more explicit. And then say it back. Twice. Use diagrams if necessary.
And read the fine print. I don't know where this information was in the fine print but we had to have missed it somewhere.
I knew being on the customer side of a medical transaction was not going to equate to being "always right"--there are so many things here that are new to our life. Things we don't know enough about, don't like, didn't choose and have to come to terms with as simply being what they are. I can accept that readily. What I didn't expect--and can't accept--is this premise that having cancer should make Kevin blind, deaf and dumb on matters of his own care.
Tuesday, September 25, 2007
Be Careful What You Wish For...
I felt good about Kevin's surgeon before we ever met him. Aside from several people giving him rave reviews, I had researched his educational background, his specialty training and his work experience.
I thought doing the same for the oncologist might make me feel more confident. I was hoping to find information about research work she's participated in or maybe a paper she had published.
Be careful what you wish for; you might get it.
I did find something online that the oncologist had written.
A testimonial. For a Bioelectric Shield. This is a pendant with a crystal in it that balances out your something or other and your whatchamacallit.
"I no longer have to take medication for headaches, because they are now infrequent. I am more alert when attending large meetings. On a recent business trip I had no fatigue and was able to go to a four-hour meeting." -------, MD
The sales site for the bioelectric shield offers several versions for sale. The price goes up as you add more expensive metals to your shield. And the promise of benefits increases as well. 15 to 20% more protection with the upgrade model over the classic, basic, model.
The site also suggests who should have a bioelectric shield. Everyone. Babies, pets...a little gem about some cancer patients having peaceful deaths thanks to the calming effects of the bioelectric shield.
I am not feeling more confident.
Realistically I know that doctors, like all of us, are free to believe in and utilize whatever alternative medicines they wish for themselves. And it's not like she's handing us pamphlets on the thing.
But she endorsed it as a doctor. Not just a person who found success with the thing. As a doctor. MD.
I guess I should have been more specific in my hope of finding something the oncologist had published.
I want a doctor with experience that benefits Kevin. Call me selfish.
At least we can be confident that a headache won't keep the doctor from being able to pay attention to his 3 1/2 hour treatments. She's good for 4 hours with the Bioelectric Shield.
I thought doing the same for the oncologist might make me feel more confident. I was hoping to find information about research work she's participated in or maybe a paper she had published.
Be careful what you wish for; you might get it.
I did find something online that the oncologist had written.
A testimonial. For a Bioelectric Shield. This is a pendant with a crystal in it that balances out your something or other and your whatchamacallit.
"I no longer have to take medication for headaches, because they are now infrequent. I am more alert when attending large meetings. On a recent business trip I had no fatigue and was able to go to a four-hour meeting." -------, MD
The sales site for the bioelectric shield offers several versions for sale. The price goes up as you add more expensive metals to your shield. And the promise of benefits increases as well. 15 to 20% more protection with the upgrade model over the classic, basic, model.
The site also suggests who should have a bioelectric shield. Everyone. Babies, pets...a little gem about some cancer patients having peaceful deaths thanks to the calming effects of the bioelectric shield.
I am not feeling more confident.
Realistically I know that doctors, like all of us, are free to believe in and utilize whatever alternative medicines they wish for themselves. And it's not like she's handing us pamphlets on the thing.
But she endorsed it as a doctor. Not just a person who found success with the thing. As a doctor. MD.
I guess I should have been more specific in my hope of finding something the oncologist had published.
I want a doctor with experience that benefits Kevin. Call me selfish.
At least we can be confident that a headache won't keep the doctor from being able to pay attention to his 3 1/2 hour treatments. She's good for 4 hours with the Bioelectric Shield.
Monday, September 24, 2007
Super Heroes
Kevin had a port implanted in his chest today for IV access for the chemotherapy treatment. He had a rough time recovering from the outpatient surgery. The sedation bothered him, the surgical area hurts and he's generally bothered by the entire thing.
It certainly makes the looming beginning of chemotherapy a reality that is now hard to ignore.
The implant is called a Bard Power Port which is the latest and greatest in the port world. It's supposed to be able to stay in "for years" as the oncologist put it--she suggested he might be leaving it in for the next five years. I saw the look on his face and I don't think that's going to happen.
In any case, the name--Power Port--sounds sort of SuperHero-ish which is appropriate.
Kevin has certainly been something of a SuperMan through all of this so far.
It certainly makes the looming beginning of chemotherapy a reality that is now hard to ignore.
The implant is called a Bard Power Port which is the latest and greatest in the port world. It's supposed to be able to stay in "for years" as the oncologist put it--she suggested he might be leaving it in for the next five years. I saw the look on his face and I don't think that's going to happen.
In any case, the name--Power Port--sounds sort of SuperHero-ish which is appropriate.
Kevin has certainly been something of a SuperMan through all of this so far.
Sunday, September 23, 2007
Butterflies Aren't Free
The oncologist office has a butterfly theme. Having a theme at all screams "woman's place" to Kevin. Kevin's had a number of offices throughout his work career and not one single theme.
Unless you count "Shithole" as a theme. Kevin once had a boss who referenced Kev's office decor with, "Clean the shithole up, Kevin; we have customers coming in."
Pictures, coordinating prints, knick knacks and designer colors mean nothing to Kevin. A lot of flat spaces where stuff can be stacked perilously high--THAT'S good interior design in his book.
Even Kevin noticed the butterflies though. Photos. Taken by the oncologist herself. Matted and hanging everywhere in the office--waiting room, bathroom, hallway, exam rooms. They are for sale. We know this because there are signs making certain we know. There are also a gallery rack and a card rack next to the receptionist desk (Kevin insists on calling it the check-out line as if we're in some medical WalMart.). There are prices on the prints and cards.
I attempt to re-direct some of the annoyance those price tags trigger in Kevin. Perhaps the proceeds go to medical research, to pay the costs for underinsured patients, to something other than the vacation fund of the oncologist. It has stuck with Kevin that she compared his undesired potential time off work for chemotherapy to her own therapeutic vacations.
Apparently the movies are wrong about this too. Butterflies are NOT free.
Unless you count "Shithole" as a theme. Kevin once had a boss who referenced Kev's office decor with, "Clean the shithole up, Kevin; we have customers coming in."
Pictures, coordinating prints, knick knacks and designer colors mean nothing to Kevin. A lot of flat spaces where stuff can be stacked perilously high--THAT'S good interior design in his book.
Even Kevin noticed the butterflies though. Photos. Taken by the oncologist herself. Matted and hanging everywhere in the office--waiting room, bathroom, hallway, exam rooms. They are for sale. We know this because there are signs making certain we know. There are also a gallery rack and a card rack next to the receptionist desk (Kevin insists on calling it the check-out line as if we're in some medical WalMart.). There are prices on the prints and cards.
I attempt to re-direct some of the annoyance those price tags trigger in Kevin. Perhaps the proceeds go to medical research, to pay the costs for underinsured patients, to something other than the vacation fund of the oncologist. It has stuck with Kevin that she compared his undesired potential time off work for chemotherapy to her own therapeutic vacations.
Apparently the movies are wrong about this too. Butterflies are NOT free.
Saturday, September 22, 2007
Package Deals
A lot of life is a package deal. We had children. One of them had a child and now we have a grandchild. Package deal.Part of the grandparent package is showing up sideline to be amazed at t-ball games and soccer matches. It's pretty cool since the Grandparent Package of Supportive Sportsmanship doesn't come with the obligations of getting them to practice and the juggling feats of family life. We show up and Joshua thinks we're the best just for being there.
Being married can be a package deal too. When I married Kevin some wonderful friends of his came with the package, like a present within a present. Among them are Fred and Sue. We had dinner with Fred and Sue after Josh's soccer match.
Sue has been this incredible source of information about diet and alternative medicine which might help Kevin. Sue is a dietician with a keen interest in natural health and alternatives to chemical medicines. Nothing far out that we would do without the knowledge of Kev's doctors but things that might help with chemotherapy side effects without adding additional new side effects.
Fred and Sue have their own experience with cancer. Fred has been treated for cancer and is currently in ongoing follow-up treatment. So they have a lot to share with us and we appreciate all the helpful things we've learned through them.
Sue has given me some great ideas for making our meals healathier while accomodating my aversion to all things vegetable. Dinner tasted great even after she revealed the hidden health benefits of it! Another package deal.
There are hidden gems to be found bundled within package deals.
Friday, September 21, 2007
Making It Work
Kevin loves his job. He likes the challenges and he likes being in the middle of solving the crisis of the day--and there's almost always a crisis of the day. His work is a large part of who he is.
One of the great blessings in our lives these past 7 weeks has been the support Kevin has gotten from his boss, co-workers and peers in the industry.
He's had cards, emails and phone calls letting him know he's in many prayers and thoughts.
His job has been arranged so that he can work from home the week of chemotherapy, travel to Ohio during his off week and return the following weekend to begin another chemotherapy week here while he works through teleconferencing.
I moved my sewing and the daycare things from one room which we've converted into a home office for Kevin. He's been unofficially back at work via phone and computer conferencing since the week he came home from the hospital. The on-loan recliner is in his office so he can rest as needed and be away from the ongoing bustle of the daycare.
I've had a few phone conversations with people whose names I've heard for 15 years but I've never met--industry contacts, fellow board members, long ago co-workers have all called the house to ask about his recovery.
Some have talked with one or both of us about their own battles with cancer--battles which we knew about in some instances and which were kept under wraps in others. We appreciate the candor and the trust they've placed in us by sharing their stories and experiences.
One guy in particular has been a great help. He was diagnosed with rectal cancer just about one year before Kevin so he has a lot of insight to offer on the process. And he has a killer dry wit very much suited to my own response to these things. Gary's information and humor have been invaluable.
The daycare kids all think Kevin is here to play with them so I have to work a little bit to keep both kids and husband focused on their own parts of the day. Hannah and Andi have already laid claim to him for after school hours to help with their homework. Knowing they would be roaring in around 4 p.m. has gone a long way to get Kevin rested and ready to roll before they show up each afternoon.
Sometimes he juggles math problems with Hannah on one computer and engineering problems on a second computer across the room.
If Kevin angles things just right he can have a snack with the littles as they wake up from afternoon naps. Then, about an hour later, can park himself tableside with Hannah and Andrea for an after school snack.
It's all working out so far and by the time Kevin is officially back at work we should have it choreographed like a ballet.
One of the great blessings in our lives these past 7 weeks has been the support Kevin has gotten from his boss, co-workers and peers in the industry.
He's had cards, emails and phone calls letting him know he's in many prayers and thoughts.
His job has been arranged so that he can work from home the week of chemotherapy, travel to Ohio during his off week and return the following weekend to begin another chemotherapy week here while he works through teleconferencing.
I moved my sewing and the daycare things from one room which we've converted into a home office for Kevin. He's been unofficially back at work via phone and computer conferencing since the week he came home from the hospital. The on-loan recliner is in his office so he can rest as needed and be away from the ongoing bustle of the daycare.
I've had a few phone conversations with people whose names I've heard for 15 years but I've never met--industry contacts, fellow board members, long ago co-workers have all called the house to ask about his recovery.
Some have talked with one or both of us about their own battles with cancer--battles which we knew about in some instances and which were kept under wraps in others. We appreciate the candor and the trust they've placed in us by sharing their stories and experiences.
One guy in particular has been a great help. He was diagnosed with rectal cancer just about one year before Kevin so he has a lot of insight to offer on the process. And he has a killer dry wit very much suited to my own response to these things. Gary's information and humor have been invaluable.
The daycare kids all think Kevin is here to play with them so I have to work a little bit to keep both kids and husband focused on their own parts of the day. Hannah and Andi have already laid claim to him for after school hours to help with their homework. Knowing they would be roaring in around 4 p.m. has gone a long way to get Kevin rested and ready to roll before they show up each afternoon.
Sometimes he juggles math problems with Hannah on one computer and engineering problems on a second computer across the room.
If Kevin angles things just right he can have a snack with the littles as they wake up from afternoon naps. Then, about an hour later, can park himself tableside with Hannah and Andrea for an after school snack.
It's all working out so far and by the time Kevin is officially back at work we should have it choreographed like a ballet.
Thursday, September 20, 2007
Punny or Pissed?
Kevin doesn't have "office visits" with the oncology clinic.
He has "encounters."
We noticed this on our billing statements. We are billed for encounters. Another eye rolling moment for Kevin.
I was driving home after yesterday's "encounter" with the oncologist. We were each lost in our own thoughts about the visit when Kevin snorted, " 'Encounter' my ASS!"
The drive continued in silence.
I can't decide if this was annoyance or rectal cancer humor. Was Kevin punny or pissed??
He has "encounters."
We noticed this on our billing statements. We are billed for encounters. Another eye rolling moment for Kevin.
I was driving home after yesterday's "encounter" with the oncologist. We were each lost in our own thoughts about the visit when Kevin snorted, " 'Encounter' my ASS!"
The drive continued in silence.
I can't decide if this was annoyance or rectal cancer humor. Was Kevin punny or pissed??
Wednesday, September 19, 2007
We interrupt this Birthday....for Cancer
Happy Birthday to me.
Happy Birthday to me.
Happy Birthday to me-eeee.
Happy Birthday to me.
I remembered a little while ago that today is my birthday.
If almost everyone--yourself included--forgets your birthday, do you have to count that year? I could just stay 47 instead of advancing to 48?
Paige called. She can't risk forgetting. Her birthday is tomorrow. We worked in a little bithday dinner over the weekend.
Secretly...not so secretly since you're reading it here...it bothers me that pretty much everyone forgot my birthday. Actually what bothers me is that it bothers me. I'm not big on the whole birthday big deal even in a normal year and this year certainly isn't heading into the family history book as 'normal.'
I just would have liked something, anything, to trump cancer. Just for a little while. Cancer takes over everything. Even my internal dialogue. Cancer even intrudes on my conversations with myself:
They all forgot my birthday.
Yep. They were thinking about ME.
Kevin forgot my birthday too.
Yep. And after all you've been doing for him. Work all day, stay up half the night while he talks about ME, get back up at 5 am to start your work day as he finally falls to sleep, figure out what he needs to eat and when, agree with everyone that, yes, he really is a trooper and all around amazing human, wade through the insurance mine field, make the phone calls, take the phone calls... All of which are about...say it with me...ME. Cancer. Hey, let's not even talk about jacking around your business commitments or the very personal nursing tasks you've become so skillfully accustomed to doing. And then he forgets your birthday.
Well, he is recovering from surgery, you know.
Sure. Pushing 4 weeks ago. He's been walking two miles a day for the last seven days. It's, what, 100 yards from the parking lot to the HallMark section of Walmart? A guy who's got Pizza Hut on speed dial and Amazon.com for a home page couldn't manage to call in a delivery dinner or do some online shopping? For you, not him.
He'll make it up to me next year.
Next year? Next year?? You've learned nothing. Do you really think it's smart to count on next year? Next month?
Fuck You, cancer. Next year is mine. And the one after.
Happy Birthday to me.
Happy Birthday to me-eeee.
Happy Birthday to me.
I remembered a little while ago that today is my birthday.
If almost everyone--yourself included--forgets your birthday, do you have to count that year? I could just stay 47 instead of advancing to 48?
Paige called. She can't risk forgetting. Her birthday is tomorrow. We worked in a little bithday dinner over the weekend.
Secretly...not so secretly since you're reading it here...it bothers me that pretty much everyone forgot my birthday. Actually what bothers me is that it bothers me. I'm not big on the whole birthday big deal even in a normal year and this year certainly isn't heading into the family history book as 'normal.'
I just would have liked something, anything, to trump cancer. Just for a little while. Cancer takes over everything. Even my internal dialogue. Cancer even intrudes on my conversations with myself:
They all forgot my birthday.
Yep. They were thinking about ME.
Kevin forgot my birthday too.
Yep. And after all you've been doing for him. Work all day, stay up half the night while he talks about ME, get back up at 5 am to start your work day as he finally falls to sleep, figure out what he needs to eat and when, agree with everyone that, yes, he really is a trooper and all around amazing human, wade through the insurance mine field, make the phone calls, take the phone calls... All of which are about...say it with me...ME. Cancer. Hey, let's not even talk about jacking around your business commitments or the very personal nursing tasks you've become so skillfully accustomed to doing. And then he forgets your birthday.
Well, he is recovering from surgery, you know.
Sure. Pushing 4 weeks ago. He's been walking two miles a day for the last seven days. It's, what, 100 yards from the parking lot to the HallMark section of Walmart? A guy who's got Pizza Hut on speed dial and Amazon.com for a home page couldn't manage to call in a delivery dinner or do some online shopping? For you, not him.
He'll make it up to me next year.
Next year? Next year?? You've learned nothing. Do you really think it's smart to count on next year? Next month?
Fuck You, cancer. Next year is mine. And the one after.
Oncologist Appointment
We met with the oncologist today.
Kevin is going to do the chemotherapy. He feels strong about doing it here where we are closer to family and friends for support. I know he thinks I will be too alone in Ohio.
We'll make it work. I tell myself that it's not important whether or not we like the doctor or the nurse practitioner or the facility. What matters is that they be able to stop this cancer, to give him a long and productive life after the treatment is over.
Kevin is going to do the chemotherapy. He feels strong about doing it here where we are closer to family and friends for support. I know he thinks I will be too alone in Ohio.
We'll make it work. I tell myself that it's not important whether or not we like the doctor or the nurse practitioner or the facility. What matters is that they be able to stop this cancer, to give him a long and productive life after the treatment is over.
I'm kidding myself though. It does matter; how he feels about his doctors and where he's being treated. It does matter, it does impact how he reponds to the treatment. If he doesn't have a confident connection with someone in the office--the doctor, the nurse practitioner or some other key person--he's not going to communicate things that may be important. If walking in the door makes him feel sick now, it may make him actually be sick later.
I'm hoping some of this is just disappointment/frustration/whatever with the whole reality of having cancer and will pass. But I'm not hopeful.
He has to have a port implanted in his chest at least a few days before chemotherapy. They can use it immediately but that's not going to be what happens. I'm making certain he has that port in and a couple of weeks to heal before he starts treatment. He needs a little time to wrap his mine around all of this.
Chemotherapy begins October 8. He returns on October 10 to have the pump removed. Then it repeats again in two weeks.
Here we go.
Tuesday, September 18, 2007
Decisions
We talked with Dr. Francis, Kevin's surgeon, today about his opinion that Kevin didn't need additional treatment.
Kevin has been battling for days about what to do, who to listen to. The surgeon said one thing, the oncologist something else entirely. One of our priests was pushing for him to do the chemotherapy and radiation. Some friends were encouraging him to listen to the surgeon.
It's been really hard.
So I called Dr. Francis to ask why he saw it the way he did. He called us back to talk about it, then called the oncologist, then called us again.
The long and the short of it is that he's now saying he agrees with how the oncologist wants to call it and thinks Kevin should do the treatment. It's the difference between the surgeon seeing the tumor located as colon cancer and the oncologist seeing it located as rectal cancer.
Rectal cancer is treated more aggressively because of it's different abilities to spread.
The surgeon is now encouraging Kevin to err on the safer side and treat it as the more aggressive cancer.
I'm still bothered that the oncology office had not called the surgeon as the nurse practitioner said they would. There seem to be some communication issues on the oncology side of things that bother me.
But we have an explanation now and a little more information. We meet with the oncologist again tomorrow and Kevin will, hopefully, determine what he is going to do by then or soon after.
Kevin has been battling for days about what to do, who to listen to. The surgeon said one thing, the oncologist something else entirely. One of our priests was pushing for him to do the chemotherapy and radiation. Some friends were encouraging him to listen to the surgeon.
It's been really hard.
So I called Dr. Francis to ask why he saw it the way he did. He called us back to talk about it, then called the oncologist, then called us again.
The long and the short of it is that he's now saying he agrees with how the oncologist wants to call it and thinks Kevin should do the treatment. It's the difference between the surgeon seeing the tumor located as colon cancer and the oncologist seeing it located as rectal cancer.
Rectal cancer is treated more aggressively because of it's different abilities to spread.
The surgeon is now encouraging Kevin to err on the safer side and treat it as the more aggressive cancer.
I'm still bothered that the oncology office had not called the surgeon as the nurse practitioner said they would. There seem to be some communication issues on the oncology side of things that bother me.
But we have an explanation now and a little more information. We meet with the oncologist again tomorrow and Kevin will, hopefully, determine what he is going to do by then or soon after.
Sunday, September 16, 2007
Prayers in the Mail
I got a package today from Shannon. She's the chaplain at a correctional facility in Washington state.
We've never met in person. We're an online connection, a cyber-friendship.
Shannon is a strong and faith filled woman. She lives her faith in every aspect of her life.
Shannon immediately took my request for prayers to the men at Shelton who embraced the idea of praying for someone by name and need. Shannon explained that there is sometimes little the men feel they can do to help others--and many of them have a very real desire to help--so being able to pray specifically for someone's intentions means a great deal to them. They embrace the effort whole heartedly.
I mentioned the growing stack of note cards for the pocket of Kevin's blanket. In no time at all I had email from her, "Prayers coming in the mail!"
Today the mailman brought a wonderful package full of prayer and humor from Shannon and the men.
The prayers are poignant and simple. There is evidence of a strong devotion to Mary with many petitions offerred to Our Lady.
The humor is classic "You're in my prayers, Kevin. Rectal cancer must be a real pain in the ass."
Their own prayer needs are equally poignant. "Please pray for my wife and child. They're alone." "My grandmother is dying. I can't be there. Please pray for both of us." "Please pray for me. I did bad things and I want to change.'
These gifts are just what I know Kevin needs through these months. The gift and strength of prayer from someone humbled in ways he can only imagine. Strong in faith in ways he can aspire to. And the opportunity to return the gift through remembering their prayer needs.
Thank you, Shannon.
We've never met in person. We're an online connection, a cyber-friendship.
Shannon is a strong and faith filled woman. She lives her faith in every aspect of her life.
Shannon immediately took my request for prayers to the men at Shelton who embraced the idea of praying for someone by name and need. Shannon explained that there is sometimes little the men feel they can do to help others--and many of them have a very real desire to help--so being able to pray specifically for someone's intentions means a great deal to them. They embrace the effort whole heartedly.
I mentioned the growing stack of note cards for the pocket of Kevin's blanket. In no time at all I had email from her, "Prayers coming in the mail!"
Today the mailman brought a wonderful package full of prayer and humor from Shannon and the men.
The prayers are poignant and simple. There is evidence of a strong devotion to Mary with many petitions offerred to Our Lady.
The humor is classic "You're in my prayers, Kevin. Rectal cancer must be a real pain in the ass."
Their own prayer needs are equally poignant. "Please pray for my wife and child. They're alone." "My grandmother is dying. I can't be there. Please pray for both of us." "Please pray for me. I did bad things and I want to change.'
These gifts are just what I know Kevin needs through these months. The gift and strength of prayer from someone humbled in ways he can only imagine. Strong in faith in ways he can aspire to. And the opportunity to return the gift through remembering their prayer needs.
Thank you, Shannon.
Saturday, September 15, 2007
Thank You
Have you ever watched the Academy Awards show on TV? The winner is still thanking everyone as the music begins to drown him out and the cameras are panning off to the next star.
That's us.
We've won the grand prize of having so much support and help these past few weeks and now we're trying to say thank you.
And the noise of daily life, decision making and recovery gets in our way even as we start to focus on the next hurdle Kevin faces, chemotherapy.
I hope we've told everyone how much we appreciate the 
prayers, the encouragment, the phone calls, the meals, the lawn mowing, the times you've just sat quietly next to us at church...the list is endless.
prayers, the encouragment, the phone calls, the meals, the lawn mowing, the times you've just sat quietly next to us at church...the list is endless.Thanks for being "some people" to us.
Thursday, September 13, 2007
Extra Attention
It's a little strange to have another adult around during the daycare work day. Kevin enjoys the kids though and the kids like having a new audience.
I'm really grateful for the on-loan recliner. Kevin can retreat to his office for a nap whenever he wants without worrying about being in the way of the kids schedule.
My bigger problem is MAKING him retreat to his office for some rest. He likes to be in the midst of the kids and they love having him around. Ella has already staked out a place next to him on the couch and she guards it zealously.
Hannah and Andrea are thrilled to find him here in the morning and ecstatic when he's still here after school. They do their best helper routines by taking a snack to him and offering to read him stories. They've made it clear that they think I'm not taking care of him quite as well as they do.
I don't think he minds the extra attention.
I'm really grateful for the on-loan recliner. Kevin can retreat to his office for a nap whenever he wants without worrying about being in the way of the kids schedule.
My bigger problem is MAKING him retreat to his office for some rest. He likes to be in the midst of the kids and they love having him around. Ella has already staked out a place next to him on the couch and she guards it zealously.
Hannah and Andrea are thrilled to find him here in the morning and ecstatic when he's still here after school. They do their best helper routines by taking a snack to him and offering to read him stories. They've made it clear that they think I'm not taking care of him quite as well as they do.
I don't think he minds the extra attention.
Tuesday, September 11, 2007
Don't Over-Complicate It
Kevin forwarded an email to me today from his friend and co-worker, Bob Farrell. Kevin must have told Bob about the recent roller coaster ride of varying medical opinion. Bob's response was perfect. Simple and encouraging without adding another layer of 'what you need to do' on top of Kevin's already overloaded mind.
From Bob's email:
"I hope whatever the doctors and you decide:
1. Makes you better.
2. Doesn't hurt you.
3. Allows you many more years of fruitful living.
4. Allows you to enjoy all for which you've worked so hard.
I read it and thought "That's it! He's got it! This is what I want for Kevin. This is what Kevin wants."
Sometimes the most simple words are the best. There are no obvious answers in there but the simple sentiments have allowed us to regroup and back off all the lofty over the top thinking that's been clouding our minds these past days.
Kevin still doesn't have a definite answer as to what he's going to do, but backing up and looking at it through clearer eyes is certainly helping both of us.
From Bob's email:
"I hope whatever the doctors and you decide:
1. Makes you better.
2. Doesn't hurt you.
3. Allows you many more years of fruitful living.
4. Allows you to enjoy all for which you've worked so hard.
I read it and thought "That's it! He's got it! This is what I want for Kevin. This is what Kevin wants."
Sometimes the most simple words are the best. There are no obvious answers in there but the simple sentiments have allowed us to regroup and back off all the lofty over the top thinking that's been clouding our minds these past days.
Kevin still doesn't have a definite answer as to what he's going to do, but backing up and looking at it through clearer eyes is certainly helping both of us.
Monday, September 10, 2007
Normal Moments
I reopened the daycare today.
One family bailed on us. Said they couldn't deal with the uncertain future of Kevin's cancer. Seems he might die and throw their whole life plan into chaos.
It annoys me that I heard myself apologizing to them.
The other kids are back though. With a million questions and a million suggestions for making Kevin's recovery easier. They are thrilled with the idea of having him here in the daycare all day.
Ella arrives first in our day. My heart melted as she trotted up the sidewalk this morning with that endearing smile and her singsong voice. It was a glorious little bit of time for just the two of us before the other families arrived and our day began to jump. Ella was probably counting the moments until her pals got here. I was savoring the quite joy of enjoying her all to myself!
The morning and afternoon were spent playing in the shade of the backyard. The kids refilled birdfeeders and explored places they've missed for the last 2 weeks.
Evan tattled on Abby. Abby told Haylee she's 'too little' to play with her. Ella sat on my lap between games of Duck, Duck, Goose. Hannah and Andi brought home a pile of homework that we worked on until suppertime.
It's nice to have some normal back in our days.
One family bailed on us. Said they couldn't deal with the uncertain future of Kevin's cancer. Seems he might die and throw their whole life plan into chaos.
It annoys me that I heard myself apologizing to them.
The other kids are back though. With a million questions and a million suggestions for making Kevin's recovery easier. They are thrilled with the idea of having him here in the daycare all day.
Ella arrives first in our day. My heart melted as she trotted up the sidewalk this morning with that endearing smile and her singsong voice. It was a glorious little bit of time for just the two of us before the other families arrived and our day began to jump. Ella was probably counting the moments until her pals got here. I was savoring the quite joy of enjoying her all to myself!
The morning and afternoon were spent playing in the shade of the backyard. The kids refilled birdfeeders and explored places they've missed for the last 2 weeks.
Evan tattled on Abby. Abby told Haylee she's 'too little' to play with her. Ella sat on my lap between games of Duck, Duck, Goose. Hannah and Andi brought home a pile of homework that we worked on until suppertime.
It's nice to have some normal back in our days.
Saturday, September 8, 2007
You're Only as Big as Your Biggest Fan...
Sometimes you just need to laugh. We desperately needed to laugh after yesterday and last night Josh provided the release we needed.I had 2 photos accepted into Columbian Park Zoo's juried art show, Fascinating Animals. It's a local show but it attracts a national list of artists. I was pleased to just make the jury cut.
Tonight was the opening of the show. I was as sure we shouldn't go as Kevin was sure we needed to get out of the house and be somewhere public where we had to think of something--anything--other than cancer.
I knew I hadn't won since I hadn't been called, but I was thrilled to discover my hummingbird photo had snagged an Honorable Mention Placing. (And a big fat gold rosette!)
I called Paige and Josh to brag a little. Paige was trying to explain to Josh that I hadn't actually won the contest but I did get an award.
"Well, no, grandma didn't WIN, but of all the pictures that didn't win, hers was the best and got a ribbon for that."
I knew Joshua had the concept down when I heard him exclaim, "Congratulations, Grandma Lorri! FIRST LOSER!"
Josh knows how to keep his granny's ego in check. You're only as big as your biggest fan perceives you to be.
Friday, September 7, 2007
Asses and Experts
We met with the oncologist office this morning; to be precise, we met with the nurse practitioner. It's hard to like the guy in the villan's role--especially when we have a SuperHero Surgeon on the flip side. Maybe that's all there is to the uncomfortable feeling we have with the oncology office--they keep getting cast in the role of delivering the bad news.
I am annoyed. After Wednesday's appointment with the surgeon, I called the oncology office and was assured that the doctor and nurse practitioner would read the surgeon's recommendation of no chemotherapy before we arrived today. I specifically told them it appeared there might be a difference of opinion.
The nurse practitioner came in and started outlining this treatment plan and talking about Kevin getting a port implanted. He didn't even notice Kevin going three shades more pale and me trying to slow him down so Kevin could catch his breath.
This guy was scheduling chemotherapy to start later this month and there sat Kevin still grasping onto the surgeon saying he didn't need chemotherapy.
The doctor and nurse practitioner had not communicated with the surgeon, didn't know Kevin was expecting to be told observation, rather than further treatment, was the plan. I don't know if they failed to follow-up on my request or if the receptionist failed to communicate my request to them.
There are other things that concern me.
The NP said it is a Stage 3 cancer. That's inconsistent with the numbers from the pathology report and the NP brushed over our questions about further defining those numbers.
Although I had previously researched the drugs used in this treatment, there is room for some variance. I asked the NP for the name of each drug Kevin would have and what the drug is for. He lumped all the pre-meds off as "vitamins" and described one of the infused chemotherapy drugs as a 'vitamin' too. The pre-meds are not remotely vitamins and that's a vague, not wrong but not quite accurate, answer on the other drug when used in this treatment. Both times I'm convinced the NP didn't want to be bothered to make an in-depth answer, not that he didn't know the answer.
We left not knowing if he's too busy to answer in depth, too lazy to pull out the big words or thinks we're too dumb to get it.
Today's experience brought home the concept that being an expert doesn't preclude being a total ass as well. Kevin has rectal cancer; I thought we were looking for an ass expert NOT an expert ass.
The nurse practitioner did assure us that there would be communication with the surgeon before Kevin's next appointment.
There are just more questions now than answers. We meet again with the oncologist on the 19th. Kevin needs some time to adjust and think this through. He's wiped out; it was an awful blow to his confidence in recovering.
Kevin's frustration made me sad, but it mostly made me want to go and kick somebody's (expert) ass for letting him get sideswiped this way.
I am annoyed. After Wednesday's appointment with the surgeon, I called the oncology office and was assured that the doctor and nurse practitioner would read the surgeon's recommendation of no chemotherapy before we arrived today. I specifically told them it appeared there might be a difference of opinion.
The nurse practitioner came in and started outlining this treatment plan and talking about Kevin getting a port implanted. He didn't even notice Kevin going three shades more pale and me trying to slow him down so Kevin could catch his breath.
This guy was scheduling chemotherapy to start later this month and there sat Kevin still grasping onto the surgeon saying he didn't need chemotherapy.
The doctor and nurse practitioner had not communicated with the surgeon, didn't know Kevin was expecting to be told observation, rather than further treatment, was the plan. I don't know if they failed to follow-up on my request or if the receptionist failed to communicate my request to them.
There are other things that concern me.
The NP said it is a Stage 3 cancer. That's inconsistent with the numbers from the pathology report and the NP brushed over our questions about further defining those numbers.
Although I had previously researched the drugs used in this treatment, there is room for some variance. I asked the NP for the name of each drug Kevin would have and what the drug is for. He lumped all the pre-meds off as "vitamins" and described one of the infused chemotherapy drugs as a 'vitamin' too. The pre-meds are not remotely vitamins and that's a vague, not wrong but not quite accurate, answer on the other drug when used in this treatment. Both times I'm convinced the NP didn't want to be bothered to make an in-depth answer, not that he didn't know the answer.
We left not knowing if he's too busy to answer in depth, too lazy to pull out the big words or thinks we're too dumb to get it.
Today's experience brought home the concept that being an expert doesn't preclude being a total ass as well. Kevin has rectal cancer; I thought we were looking for an ass expert NOT an expert ass.
The nurse practitioner did assure us that there would be communication with the surgeon before Kevin's next appointment.
There are just more questions now than answers. We meet again with the oncologist on the 19th. Kevin needs some time to adjust and think this through. He's wiped out; it was an awful blow to his confidence in recovering.
Kevin's frustration made me sad, but it mostly made me want to go and kick somebody's (expert) ass for letting him get sideswiped this way.
Thursday, September 6, 2007
By The Numbers
Kevin is resting after his second walk of the day.
We received the pathology report in the mail.
Cancer staging takes a lot of things into account and varies from cancer to cancer. Most commonly, Roman numerals of I, II, III and IV as well as TMN Staging. In solid tumors like Kevin's, both are used.
Kevin's tumor has been rated as T3 N0 Mx on the pathology report.
The TNM staging refers to Tumor, Nodes and Metastasis.
Tumor ranking is 0 - 4 and indicates the extent of the tumor. How far it has invaded. A T0 tumor has not invaded into local tissue, a T4 has grown into nearby organs. Obviously, the lower the T ranking, the better. Kevin's tumor is on the low end of being a T3. There is no visible invasion outside of the bowel wall until it is examined microscopically. Then it shows on the outer surface of the bowel. It has not invaded into other tissue of organs.
Nodes refers to lymph nodes which can help cancer cells to spread throughout the body. You want a low number here too. N0 means no biopsied lymph nodes showed involvement. N4 would mean extensive involvement including number, size and location. Kevin's biopsy shows no lymph node involvment in the lymph nodes that were examined. This is good news.
Metastasis is usually either 0 or 4. M0 means there is nothing to indicate the cancer has spread to other parts of the body. M4 means there is spread. Kevin's official report is Mx which means the pathologist hadn't seen the CT results to support there is no metastasis so he couldn't comment on it. Now that we know the CT results, his Mx is actually an M0.
Criteria for cancer staging varies for different types of cancer. For Kevin's cancer, this adds up to a Stage II cancer. If you take the stage grading further out to something called AJCC ranking, it adds up to a Stage II A cancer which is even better.
Additionally they look at something called the grade of tumor. Kevin's falls into the middle of the range being "moderately well differentiated."
So the negatives are that it is a large tumor which has invaded through the bowel wall. This increases the liklihood that it might have spread already. And it is only "moderately well differentiated."
The positives are that is it "moderately well differentiated" instead of "poorly." It hasn't invaded other tissues or organs. There are no lymph nodes involved and no obvious metastasis.
So it could be better. We would have liked a nice T2. But it could be a lot worse so we'll take these numbers with thankfulness.
We received the pathology report in the mail.
Cancer staging takes a lot of things into account and varies from cancer to cancer. Most commonly, Roman numerals of I, II, III and IV as well as TMN Staging. In solid tumors like Kevin's, both are used.
Kevin's tumor has been rated as T3 N0 Mx on the pathology report.
The TNM staging refers to Tumor, Nodes and Metastasis.
Tumor ranking is 0 - 4 and indicates the extent of the tumor. How far it has invaded. A T0 tumor has not invaded into local tissue, a T4 has grown into nearby organs. Obviously, the lower the T ranking, the better. Kevin's tumor is on the low end of being a T3. There is no visible invasion outside of the bowel wall until it is examined microscopically. Then it shows on the outer surface of the bowel. It has not invaded into other tissue of organs.
Nodes refers to lymph nodes which can help cancer cells to spread throughout the body. You want a low number here too. N0 means no biopsied lymph nodes showed involvement. N4 would mean extensive involvement including number, size and location. Kevin's biopsy shows no lymph node involvment in the lymph nodes that were examined. This is good news.
Metastasis is usually either 0 or 4. M0 means there is nothing to indicate the cancer has spread to other parts of the body. M4 means there is spread. Kevin's official report is Mx which means the pathologist hadn't seen the CT results to support there is no metastasis so he couldn't comment on it. Now that we know the CT results, his Mx is actually an M0.
Criteria for cancer staging varies for different types of cancer. For Kevin's cancer, this adds up to a Stage II cancer. If you take the stage grading further out to something called AJCC ranking, it adds up to a Stage II A cancer which is even better.
Additionally they look at something called the grade of tumor. Kevin's falls into the middle of the range being "moderately well differentiated."
So the negatives are that it is a large tumor which has invaded through the bowel wall. This increases the liklihood that it might have spread already. And it is only "moderately well differentiated."
The positives are that is it "moderately well differentiated" instead of "poorly." It hasn't invaded other tissues or organs. There are no lymph nodes involved and no obvious metastasis.
So it could be better. We would have liked a nice T2. But it could be a lot worse so we'll take these numbers with thankfulness.
Wednesday, September 5, 2007
Different Optimism
Being an assbackward optimist is a pain in the ass.
Living with an assbackward optimist is probably a bigger pain in the ass.
Kevin had a check up with the surgeon today.
He says Kevin is healing wonderfully. Kev's still sore and tired but he's walking over a mile each day and already back at work via phone and computer. He's good to ride and drive if he wants provided we stop every 90 minutes or so to let him move and stretch.
Dr. Francis reiterated that with no lymph node involvement Kevin did not need additional treatment. CT scans every 3 to 6 months for a while and yearly colonoscopies. I asked if the oncologist would agree and he assured us that she will.
Kevin is over the top thrilled with this news. A few more weeks of healing and he sees life drifting back to our old comfortable version of normal.
I hate being the negative one--especially after being the bad news bearer for most of last month--but I'm not convinced the oncologist will see it the same as the surgeon. Maybe I've just been reading too much.
My assbackward optimism again. Prepare for the worst news and celebrate all the more if it's good news. I'm willing to be wrong this time. I want to be wrong.
Kevin snapped about my need to rain on his parade. I know he wants to put the last 4 weeks behind us and move on.
Sometimes we just see optimism differently.
Living with an assbackward optimist is probably a bigger pain in the ass.
Kevin had a check up with the surgeon today.
He says Kevin is healing wonderfully. Kev's still sore and tired but he's walking over a mile each day and already back at work via phone and computer. He's good to ride and drive if he wants provided we stop every 90 minutes or so to let him move and stretch.
Dr. Francis reiterated that with no lymph node involvement Kevin did not need additional treatment. CT scans every 3 to 6 months for a while and yearly colonoscopies. I asked if the oncologist would agree and he assured us that she will.
Kevin is over the top thrilled with this news. A few more weeks of healing and he sees life drifting back to our old comfortable version of normal.
I hate being the negative one--especially after being the bad news bearer for most of last month--but I'm not convinced the oncologist will see it the same as the surgeon. Maybe I've just been reading too much.
My assbackward optimism again. Prepare for the worst news and celebrate all the more if it's good news. I'm willing to be wrong this time. I want to be wrong.
Kevin snapped about my need to rain on his parade. I know he wants to put the last 4 weeks behind us and move on.
Sometimes we just see optimism differently.
Tuesday, September 4, 2007
Faith Gets Us Through
The last 4 weeks are catching up with Kevin. He's tired and achy. Once he accepted that this is all real, he focused on getting through the surgery and here on the other side of that is a very wearing recovery period. We've had a lot of good news but there's still a lot for him to do in the process of recovering from surgery.
John and Elaina added some prayers and a story from John about one of his early experiences with Kevin to the "prayer pocket" of Kevin's blanket. The timing was perfect. Today he needed to hear from long time close friends.
Those prayer reminders, the jokes, the stories and reflections in that pocket have already been invaluable in helping Kevin through this time. I can't say thank you enough to everyone who has helped with this part of his recovery. It's had a tremendous impact on both of us to read and recall the deep faith of our friends and family.
I've often seen the 'faith will get you through' phrases printed on gift items or in Christian reading and ackowledged that as a truth in our lives. This experience, though, with the over flowing prayer pocket on Kevin's blanket has shown me that sometimes someone else's faith will get you through when you hit those times where your own faith falters.
Thanks, all, for getting us through.
John and Elaina added some prayers and a story from John about one of his early experiences with Kevin to the "prayer pocket" of Kevin's blanket. The timing was perfect. Today he needed to hear from long time close friends.
Those prayer reminders, the jokes, the stories and reflections in that pocket have already been invaluable in helping Kevin through this time. I can't say thank you enough to everyone who has helped with this part of his recovery. It's had a tremendous impact on both of us to read and recall the deep faith of our friends and family.
I've often seen the 'faith will get you through' phrases printed on gift items or in Christian reading and ackowledged that as a truth in our lives. This experience, though, with the over flowing prayer pocket on Kevin's blanket has shown me that sometimes someone else's faith will get you through when you hit those times where your own faith falters.
Thanks, all, for getting us through.
Monday, September 3, 2007
Phone Calls, Follow-ups and Naps
I called Kevin's brother today. We hadn't talked to his siblings yet about Kevin's cancer.
An email from a friend reminded me that we had more people to update.
At first it was a deliberate decision to wait until we had more information. Then it was lost in the madness of getting life rearranged for surgery and treatment so quickly.
Kevin's mother is in a nursing home and at a very demanding stage in adjusting to the changes in her life. We both agreed we did not want her to know about Kevin's cancer at this point. Maybe never, depending upon how he does. Some days she is very lucid, some days not. And her physical ability to do much is never strong these days. Telling her seems cruel and like placing a lot of additional burden on his family who deals with her needs on a daily basis.
It does impact his brothers and sisters though. There is a genetic connection with rectal cancer so immediate relatives--children and siblings--need to know and begin being screened at an appropriate age.
His brother was actually vacationing away from home but he said he would pass the information among the siblings. I gave him my cell number as well as our home number. Kevin isn't on his work phone much this early in his recovery.
There are other people we owe phone calls to but something more important needs my attention first. I am going to crawl in bed next to Kevin, find a not sore place where I can slip an arm around him and enjoy a nap together.
An email from a friend reminded me that we had more people to update.
At first it was a deliberate decision to wait until we had more information. Then it was lost in the madness of getting life rearranged for surgery and treatment so quickly.
Kevin's mother is in a nursing home and at a very demanding stage in adjusting to the changes in her life. We both agreed we did not want her to know about Kevin's cancer at this point. Maybe never, depending upon how he does. Some days she is very lucid, some days not. And her physical ability to do much is never strong these days. Telling her seems cruel and like placing a lot of additional burden on his family who deals with her needs on a daily basis.
It does impact his brothers and sisters though. There is a genetic connection with rectal cancer so immediate relatives--children and siblings--need to know and begin being screened at an appropriate age.
His brother was actually vacationing away from home but he said he would pass the information among the siblings. I gave him my cell number as well as our home number. Kevin isn't on his work phone much this early in his recovery.
There are other people we owe phone calls to but something more important needs my attention first. I am going to crawl in bed next to Kevin, find a not sore place where I can slip an arm around him and enjoy a nap together.
Sunday, September 2, 2007
Drinking Deep
The daycare kids keep track of our backyard box turtle. They're enthralled when he shows up to plod across the yard and disappears only to show up again in a few days. Sometimes one of kids will be reaching under a bush to retrieve a ball and come out with the turtle instead.The turtle is a great way to teach a little science, a little kindness and a lot about faith. We talk about how he carries his house with him so he's always at home, how to make the backyard a good place for turtles and people to live, and a lot about God.
Turtles bring up a lot of questions about God. How did God get the turtle in the shell? WHY did God put the turtle in the shell? Why are turtles so quiet and why didn't God make them to run fast?
They usually answer their own questions.
I learn a lot. The kids are very good at seeing God at work in nature and they often open my eyes in new ways.
I was reminded of this today as I was watering our gardens. I was thinking of Mass last night. Kevin really wanted to be there so we went in spite of my concerns. The last month has him feeling as drained and dry as this summer's drought has left our gardens. He wanted to be renewed and St. Tom's was the perfect place for him to find that renewal in friends and prayer. It was good for him to see friends. Beth hugged him carefully and settled him into a pew with a pillow. He needed the hugs even more than the pillow.
As I watered one parched area of the garden, the box turtle came plodding across the lawn to bury his face and drink deep in a puddle.
I watched him and thought how much our prayer life mimics life in the garden.
Parched and dry, empty. Then drinking deep in prayer and friendship--in communion--so we can move forward through another day.
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