Wednesday, October 31, 2007
Stories, Books and Life--October 07
October 2007...Kevin's side of the bed is cleared of Harry Potter and instead his iTouch and a set of headphones are resting on the table. My side of the bed is now teetering with the unfinished Potter tales and a pile of research about various chemotherapy drugs. The kids shelf has a well used pile of Halloween pop-up and counting books. Ten Little Monsters. The dust has grown thicker on the "grown-up" bookshelves. One of these days things will settle down and I'll tend to both books and dust. For now chemotherapy and the re-arrangement of our lives takes center stage.
Just In Case
Just when I think we're beyond the whole costume/Halloween thing, Kate comes home. She raided the garage and my sewing stash a few days ago to work on her costume. Today she dropped in to show off her (magnificient if I may say so) results.She's doing the downtown Halloween music scene as a raven. James and the band have a show at the Brew Co. and Kate plans to join the costumed revelers.
The daycare kids are pumped about trick-or treating. Even though we had a party here just days ago, they'll all show up tonight in costume. They saw me fill the candy bowl today; they know the SWAG is good here on October 31st. Usually a few former daycare families bring their older kids by and it's a nice little family reunion.
Josh called to tell about his Halloween haul. He and Landon made the neighborhood scene. The neighbors, Mac and Nuala, who are every bit of 80 years old, dressed up to hand out candy to the kids. I asked Josh if he would save some tootsie rolls for me. His mom called later, laughing. They were trick-or-treating a friends house and Josh noticed he had gotten a handful of tootsie rolls from them. He very politely asked if he could have some of the other type of candy in their bowl too, explaining,"My grandma takes all of the tootsie rolls."
Kevin made his annual candy purchase "just in case." He's been buying a huge bag of candy bars for 5 years worth of "just in case" a trick-or-treater stops in. I'll be picking the wrappers out of the side pocket on his car for weeks to come.
And me? The neighborhood kids cleaned out the candy stash two hours ago. I shut the porch lights off, taped the blinds shut and hunkered down with the TV on mute.
It's just me and a bowlful of M & Ms and Tootsie Rolls. It's possible a few brave souls will go ahead and knock on my darkened door so I saved the M & Ms and Tootsie Rolls. For them. Just in case..
Monday, October 29, 2007
Daycare Halloween
Halloween in the daycare.Time to dress up, play "Stick the Wart on the Witch," eat popcorn balls and scavenge for bags of candy.
It's chaotic. It's messy. It's sticky. And the kids will be bouncing off the walls from the sugar rush that lasts a week.
I love it and I'm going to miss it.
Friday, October 26, 2007
Homecoming
Homecoming weekend at Purdue.Even feeling tired from chemotherapy, Kevin didn't want to miss the annual Homecoming Night Parade.
What he didn't want to miss is the annual spectacle of watching some of our littles and their parents enjoy the Night Parade.
Haylee, Evan, Hannah and Andrea had a blast even through the occasionally misty rain. They gathered candy, posters, footballs and balloons from the assorted student groups, cheered with the cheerleaders, marched with the band.
The students and campus life are among the things we'll miss most in Ohio.
For now, though, we're going to bed so we can get up bright and early to catch a glimpse of the early morning costumes of the Breakfast Club in the Village.
Thursday, October 25, 2007
Network for Information
Kevin had a Neulasta injection today.
The information we got from the clinic previous to the injection was limited to a date and time on the schedule sheet with the entry "injections."
WTF. Cancer has so expanded my embrace of the occasionally satisfying expletive. WTF. Isn't he entitled to a little more information about what's being done to his body?
I waited until after his treatment this week before I called. Gave the benefit of the doubt--surely someone would sit with him and explain..."Now, on Thursday you're going to come in for....And the reason you do this is..."
Nope. Didn't happen.
I, of course, called then to find out more--what injections and why. Bugs the heck out of me that we have to run down information like this but, ok, this is how things are done. In any case, once we had the name of the drug it was easy to research it through our growing network of up to date information. The internet, a handful of friends and friends of friends who are nurses, radiologists, dieticians or have had recent personal experience with this cancer treatment.
Tip for the Day---Networking for information is your friend if you or someone you love is ever diagnosed with cancer. Don't be shy, don't be so polite you walk through it in dumb-struck silence and don't ever be afraid to ask until you get an understandable answer. Ask someone else if your first line of information (your own doctors office) turns out to suck at communication.
Kevin's chemotherapy is myelosuppressive. That means it kills some healthy blood cells as well as cancer cells and will eventually cause lowered blood counts. Back to the earlier explanation of chemotherapy not knowing the difference between cancer cells and healthy cells so it targets all rapidly dividing cells. (This is something I predict will change as research is showing promise of ways to target only the cancer cells.)
White blood cells (there are several kinds of white blood cells) help fight infection. Neulasta is a white cell booster that will help his immune system recover and lowers the chance of him getting an infection.
It's given 24 hours after chemotherapy is completed (for Kevin this means after the infusion pump comes off) and is usually given once a month. So he'll get an immune system boost after every 2 treatments (every complete cycle).
Neulasta doesn't come with a lot of baggage of its own. There are always some possibilities of severe reaction, but that's unusual. Some people have bone pain because it works within the bone marrow but it's usually minimal and manageable with Tylenol.
This is a big improvement over what chemotherapy patients experienced in years past and should increase the liklihood of Kevin staying relatively healthy through treatment.
The information we got from the clinic previous to the injection was limited to a date and time on the schedule sheet with the entry "injections."
WTF. Cancer has so expanded my embrace of the occasionally satisfying expletive. WTF. Isn't he entitled to a little more information about what's being done to his body?
I waited until after his treatment this week before I called. Gave the benefit of the doubt--surely someone would sit with him and explain..."Now, on Thursday you're going to come in for....And the reason you do this is..."
Nope. Didn't happen.
I, of course, called then to find out more--what injections and why. Bugs the heck out of me that we have to run down information like this but, ok, this is how things are done. In any case, once we had the name of the drug it was easy to research it through our growing network of up to date information. The internet, a handful of friends and friends of friends who are nurses, radiologists, dieticians or have had recent personal experience with this cancer treatment.
Tip for the Day---Networking for information is your friend if you or someone you love is ever diagnosed with cancer. Don't be shy, don't be so polite you walk through it in dumb-struck silence and don't ever be afraid to ask until you get an understandable answer. Ask someone else if your first line of information (your own doctors office) turns out to suck at communication.
Kevin's chemotherapy is myelosuppressive. That means it kills some healthy blood cells as well as cancer cells and will eventually cause lowered blood counts. Back to the earlier explanation of chemotherapy not knowing the difference between cancer cells and healthy cells so it targets all rapidly dividing cells. (This is something I predict will change as research is showing promise of ways to target only the cancer cells.)
White blood cells (there are several kinds of white blood cells) help fight infection. Neulasta is a white cell booster that will help his immune system recover and lowers the chance of him getting an infection.
It's given 24 hours after chemotherapy is completed (for Kevin this means after the infusion pump comes off) and is usually given once a month. So he'll get an immune system boost after every 2 treatments (every complete cycle).
Neulasta doesn't come with a lot of baggage of its own. There are always some possibilities of severe reaction, but that's unusual. Some people have bone pain because it works within the bone marrow but it's usually minimal and manageable with Tylenol.
This is a big improvement over what chemotherapy patients experienced in years past and should increase the liklihood of Kevin staying relatively healthy through treatment.
Wednesday, October 24, 2007
Two Down
Cycle 1 is complete. Two treatments down.
Mary and my father stayed with the kids today while I went with Kevin to get the infusion pump off. The kids were thrilled to have Ms. Mary there again. They'll miss her because she and my father leave soon to winter in Arizona.
By Tuesday evening Kevin is becoming jumpy about wanting the pump off. Wednesday arrives and he is practically climbing the walls.
So the extra waiting at the clinic really wears on him. Sitting in the infusion room for 45 minutes before someone can get to him is barely tolerable for him. Today the nurse/pharmacist noticed him waiting and did the job herself. She commented that he shouldn't have to wait like that. I was loud in my agreement.
The place seems chronically understaffed and a little on the chaotic side.
The pharmicist/nurse did notice the irritation the tape is causing on Kevin's skin and told him to insist on something else next time he is in. I really appreciate this sort of observation and action. This is the kind of care (minus the waiting) that I want for him.
He's more tired today than before and the headache is lasting a little longer. We've found he does ok as long as we keep to a Tylenol schedule of no more than 4 hours. Keeping the headache at bay also helps keep the nausea down. He's been able to manage the nausea by managing the headache and eating smaller meals more often. The cold sensitivity has increased in his mouth and his fingers. We have gloves stashed in all the cars and near each door and the refrigerator.
He's feeling a little more discouraged about treatment and wishing out loud that he hadn't startead it.
Mary and my father stayed with the kids today while I went with Kevin to get the infusion pump off. The kids were thrilled to have Ms. Mary there again. They'll miss her because she and my father leave soon to winter in Arizona.
By Tuesday evening Kevin is becoming jumpy about wanting the pump off. Wednesday arrives and he is practically climbing the walls.
So the extra waiting at the clinic really wears on him. Sitting in the infusion room for 45 minutes before someone can get to him is barely tolerable for him. Today the nurse/pharmacist noticed him waiting and did the job herself. She commented that he shouldn't have to wait like that. I was loud in my agreement.
The place seems chronically understaffed and a little on the chaotic side.
The pharmicist/nurse did notice the irritation the tape is causing on Kevin's skin and told him to insist on something else next time he is in. I really appreciate this sort of observation and action. This is the kind of care (minus the waiting) that I want for him.
He's more tired today than before and the headache is lasting a little longer. We've found he does ok as long as we keep to a Tylenol schedule of no more than 4 hours. Keeping the headache at bay also helps keep the nausea down. He's been able to manage the nausea by managing the headache and eating smaller meals more often. The cold sensitivity has increased in his mouth and his fingers. We have gloves stashed in all the cars and near each door and the refrigerator.
He's feeling a little more discouraged about treatment and wishing out loud that he hadn't startead it.
Tuesday, October 23, 2007
Day Two, again
Kevin is doing ok. Some side effects like a constant headache and mild nausea but he is able to work through them. Keeping something in his stomach seems to help ward off the nausea.The kids like taking something to him during their morning and afternoon snack time. Controlling the headache helps with the nausea too.
The cold sensitivity is increasing in his mouth. He had a cold drink and immediately spit it out because it hurt inside his mouth. Surprised the heck out of him. He says it's a very strange sensation.
The infusion pump annoys him. It's heavy to carry and he has to get it positioned right or the strap causes a headache. It's louder than we thought it would be---at night I hear the little whirrr as it delivers another minute dose then I wait to hear the whirrr again. It's hard to step out of once you let that start happening!
He was chatty again through much of the night. I'm certain it's the Decadron in his pre-meds that gets him a little wired through the first night or so. He reads a while, watches a movie on his iTouch. And talks. A lot.
He continues to work full days (10+ hours a day) here at home during treatment week. It seems to be working out although he hasn't had the time to catch up as much on paperwork projects as he hoped. A lot of phone and computer conferencing as well as email to handle.
Two snacks a day and lunch served at his desk. It's not a bad deal at all.
The cold sensitivity is increasing in his mouth. He had a cold drink and immediately spit it out because it hurt inside his mouth. Surprised the heck out of him. He says it's a very strange sensation.
The infusion pump annoys him. It's heavy to carry and he has to get it positioned right or the strap causes a headache. It's louder than we thought it would be---at night I hear the little whirrr as it delivers another minute dose then I wait to hear the whirrr again. It's hard to step out of once you let that start happening!
He was chatty again through much of the night. I'm certain it's the Decadron in his pre-meds that gets him a little wired through the first night or so. He reads a while, watches a movie on his iTouch. And talks. A lot.
He continues to work full days (10+ hours a day) here at home during treatment week. It seems to be working out although he hasn't had the time to catch up as much on paperwork projects as he hoped. A lot of phone and computer conferencing as well as email to handle.
Two snacks a day and lunch served at his desk. It's not a bad deal at all.
Monday, October 22, 2007
Cycle 1-15
Chemotherapy #2.
Kevin is tired and has a headache again. The predicted cold sensitivity is growing in his mouth and fingers.
Kate was with him at the clinic today; she doesn't have class on Mondays. Kevin could manage on his own but I want someone with him to ask the questions he's too tired to ask, to hear what he misses and generally remind him that he's not alone.
It was good that she went. I wanted a different perspective on how things are done there. And I think it's important for the girls to see firsthand what he is going through.
Kate's observations were similar to mine from two weeks ago. A lot of unnecessary waiting that extends his day and wears on him.
Kevin came home and laid down for 30 minutes. Beyond the effects of the drugs, the entire experience of going to the clinic just exhausts him.
He's eating ok and continuing to walk twice a day when possible. He had a conference call late this afternoon which did as much as anything to get him awake and animated! Work is great therapy for Kevin. He loves what he does and he does it well. Work invigorates him and lets him focus beyond what is going on inside his body.
Kevin is tired and has a headache again. The predicted cold sensitivity is growing in his mouth and fingers.
Kate was with him at the clinic today; she doesn't have class on Mondays. Kevin could manage on his own but I want someone with him to ask the questions he's too tired to ask, to hear what he misses and generally remind him that he's not alone.
It was good that she went. I wanted a different perspective on how things are done there. And I think it's important for the girls to see firsthand what he is going through.
Kate's observations were similar to mine from two weeks ago. A lot of unnecessary waiting that extends his day and wears on him.
Kevin came home and laid down for 30 minutes. Beyond the effects of the drugs, the entire experience of going to the clinic just exhausts him.
He's eating ok and continuing to walk twice a day when possible. He had a conference call late this afternoon which did as much as anything to get him awake and animated! Work is great therapy for Kevin. He loves what he does and he does it well. Work invigorates him and lets him focus beyond what is going on inside his body.
Friday, October 19, 2007
Seeing Our Blessings
Kevin had an appointment with the nurse practitioner this morning.
Paige and Joshua came over to help with the kids. School is out today for Josh and for Hannah and Andrea here. I was a little concerned about Mary and my father dealing with the girls coming in from school at lunch time so I appreciated Paige's offer to help.
Mary didn't want to miss her time with the littles, though, so she took charge of the youngest kids while Paige and Josh did the backyard scene with the older ones.
Kevin is doing well. We had few questions for the NP. Our trust in his willingness and ability to answer is a little compromised at this point. We've pretty much come to the conclusion that commuincation is bad enough in the office that we either hold questions until Kevin sees the doctor or we research the answers for ourselves.
In any case, the NP did give Kevin a thorough check-up and was encouraging about Kevin's response to the treatment so far. He was clearly surprised that Kevin has been working and traveling to do so. But he was very encouraging about Kevin doing that if he feels able and interested in doing so.
The doctor's side of the practice doesn't come with the chaos and tiring waiting of the infusion side. If she or the NP have an emergency with a patient, things can get long, but it's good to know Kevin would get that kind of priority response if he needed it so that sort of waiting takes less of a toll on him. Today was a quick in-out deal which went a long way to boost Kevin's spirits.
Mary was reading to the littles when we came in and Paige had taken Josh and the girls out for pizza so we came home to a quiet house. My father was puttering around with the tuning on my VW, finding his own special way to help Kevin.
The kids barely notice me when we return. They love having Ms. Mary here! Ella and Mary are especially close. I notice Ella making a beeline straight for Mary's lap when she sits down on the floor to read the kids a story. And Mary loves Ella's gentle demeanor.
It's been nice to see our family work together, each within their own talents, to help us. All of this cancer journey has been eye opening and sometimes what it has done is allowed us to see our blessings.
Paige and Joshua came over to help with the kids. School is out today for Josh and for Hannah and Andrea here. I was a little concerned about Mary and my father dealing with the girls coming in from school at lunch time so I appreciated Paige's offer to help.
Mary didn't want to miss her time with the littles, though, so she took charge of the youngest kids while Paige and Josh did the backyard scene with the older ones.
Kevin is doing well. We had few questions for the NP. Our trust in his willingness and ability to answer is a little compromised at this point. We've pretty much come to the conclusion that commuincation is bad enough in the office that we either hold questions until Kevin sees the doctor or we research the answers for ourselves.
In any case, the NP did give Kevin a thorough check-up and was encouraging about Kevin's response to the treatment so far. He was clearly surprised that Kevin has been working and traveling to do so. But he was very encouraging about Kevin doing that if he feels able and interested in doing so.
The doctor's side of the practice doesn't come with the chaos and tiring waiting of the infusion side. If she or the NP have an emergency with a patient, things can get long, but it's good to know Kevin would get that kind of priority response if he needed it so that sort of waiting takes less of a toll on him. Today was a quick in-out deal which went a long way to boost Kevin's spirits.
Mary was reading to the littles when we came in and Paige had taken Josh and the girls out for pizza so we came home to a quiet house. My father was puttering around with the tuning on my VW, finding his own special way to help Kevin.
The kids barely notice me when we return. They love having Ms. Mary here! Ella and Mary are especially close. I notice Ella making a beeline straight for Mary's lap when she sits down on the floor to read the kids a story. And Mary loves Ella's gentle demeanor.
It's been nice to see our family work together, each within their own talents, to help us. All of this cancer journey has been eye opening and sometimes what it has done is allowed us to see our blessings.
Thursday, October 18, 2007
Perspectives
Kevin is on his way home from Ohio tonight.
Physically, he did ok on his own this week. Very little side effect stuff going on. Some fatigue.
It was good in many ways for him to be there at work instead of working from home. A different level of involvment and getting things accomplished. Work keeps him busy and thinking of something other than chemotherapy and cancer.
Emotionally it was a hard week for him. A lot of change happening. Chemotherapy, closing the daycare, not being able to do much to help get the yard and gardens ready for winter, nights alone magnify the aches and pains of recovering from surgery and chemotherapy.
Right now we see time in a different perspective. The nights until I've moved there and am with him full time seem endless to him. The weeks left to be with the daycare kids, pack up 30 years of a household and rearrange the details of life seem to fly by to me.
Physically, he did ok on his own this week. Very little side effect stuff going on. Some fatigue.
It was good in many ways for him to be there at work instead of working from home. A different level of involvment and getting things accomplished. Work keeps him busy and thinking of something other than chemotherapy and cancer.
Emotionally it was a hard week for him. A lot of change happening. Chemotherapy, closing the daycare, not being able to do much to help get the yard and gardens ready for winter, nights alone magnify the aches and pains of recovering from surgery and chemotherapy.
Right now we see time in a different perspective. The nights until I've moved there and am with him full time seem endless to him. The weeks left to be with the daycare kids, pack up 30 years of a household and rearrange the details of life seem to fly by to me.
Wednesday, October 17, 2007
Kevin's Work Days
Kevin has been at work in Ohio this week.
He says he's feeling well. Tired but not extremely so. The headache and accompanying nausea are gone. His port itches and there are still red tape marks. That sensitive Irish skin may object mightily to this assault.
He's eating the meals I prepared. He worries about choosing the right things to eat so we decided to simply go with meals I prepare here at home. He carries a cooler to Ohio then freezes/reheats as needed. It's worked well for the 2 weeks we've done it.
Lunch meetings at work are a challenge but the people there are so good about being aware of his needs. There are several former cancer patients who know the drill. Along with the mid-morning/afternoon applesauce, he's taken a few of the ready to heat meals which don't require refrigeration for days he can't get away at lunchtime.
Our cabinets are suddenly full of single serving snacks, applesauce, pudding and juices.
There are a couple of people who check on him. Close the office door, sit down and say, "Now tell me how you're really doing" kind of checking. This eases my mind considerably and I am filled with gratitude.
He says he's feeling well. Tired but not extremely so. The headache and accompanying nausea are gone. His port itches and there are still red tape marks. That sensitive Irish skin may object mightily to this assault.
He's eating the meals I prepared. He worries about choosing the right things to eat so we decided to simply go with meals I prepare here at home. He carries a cooler to Ohio then freezes/reheats as needed. It's worked well for the 2 weeks we've done it.
Lunch meetings at work are a challenge but the people there are so good about being aware of his needs. There are several former cancer patients who know the drill. Along with the mid-morning/afternoon applesauce, he's taken a few of the ready to heat meals which don't require refrigeration for days he can't get away at lunchtime.
Our cabinets are suddenly full of single serving snacks, applesauce, pudding and juices.
There are a couple of people who check on him. Close the office door, sit down and say, "Now tell me how you're really doing" kind of checking. This eases my mind considerably and I am filled with gratitude.
Sunday, October 14, 2007
A Leap In Faith or Foolishness?
"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you" Deu 31:6
Do not be afraid or terrified.
I read this early this morning and thought "Bullshit."
I am afraid of cancer. Afraid of the changes it demands in our lives. Afraid to go and afraid to stay.
Kevin's initial argument that our friends, family, our support system are here is a solid point. And we've needed the presence of these people. He doesn't want us to be alone, he doesn't want me to feel alone.
And then I see how much effort it costs him just to go to the clinic here and I know there has to be a better place for him in his treatment.
And we won't be alone.
I don't know if this is a leap of faith or foolishness. There haven't been many obvious "right" answers in much of the recent months.
I do know there are some things we take with us wherever we go. Our beliefs, our faith, that God will not leave us alone.
Friday, October 12, 2007
Hard Decisions
After a lot of talk and prayer, lots of prayer, I've decided to close the daycare in order to better meet Kevin's needs during the coming months.
It's a lot of things--the travel to and from Ohio and the toll that's going to take on him, the appointments I can't go to with him, the amount of time I have to ask someone from my family to sub for me here in the daycare and the oncology clinic here.
My father and Mary will be heading to Arizona soon so I won't have them to stay with the kids for an hour here and there while I go with Kevin to appointments. I can't expect our daughters or my sister or brother-in-law to continue rearranging their work days to accomodate my desire to keep the daycare open.
The clinic just doesn't feel "right" for him, for us. He feels overlooked at the clinic and finds the chaotic nature of the infusion area unsettling. The nursing staff is very nice and caring but also seems over loaded. A lot to do and not enough of them to do it.
And Kevin needs me. He just needs me to be available, to put him first.
I told the daycare families today. Two moms cried. One thought I was kidding and I had to keep assuring her that I was serious.
It was awful, gutwrenching. I didn't want this to turn all of their lives upside down too.
I'll be going to Ohio so Kevin can continue his treatment and his job with less travel and, hopefully, less chaos in his treatment weeks. Our last day of daycare will be the Friday before Christmas. I'm closing for the holiday break as usual but I won't be reopening in January.
Hannah caught on to what is happening. She crawled up on my lap to ask, "Who is going to take care of us?"
I don't know, Hannah. Someone wonderful. I'll help your mom find someone wonderful.
There aren't any easy answers and I don't have a plan. Not even a safety pin.
It's a lot of things--the travel to and from Ohio and the toll that's going to take on him, the appointments I can't go to with him, the amount of time I have to ask someone from my family to sub for me here in the daycare and the oncology clinic here.
My father and Mary will be heading to Arizona soon so I won't have them to stay with the kids for an hour here and there while I go with Kevin to appointments. I can't expect our daughters or my sister or brother-in-law to continue rearranging their work days to accomodate my desire to keep the daycare open.
The clinic just doesn't feel "right" for him, for us. He feels overlooked at the clinic and finds the chaotic nature of the infusion area unsettling. The nursing staff is very nice and caring but also seems over loaded. A lot to do and not enough of them to do it.
And Kevin needs me. He just needs me to be available, to put him first.
I told the daycare families today. Two moms cried. One thought I was kidding and I had to keep assuring her that I was serious.
It was awful, gutwrenching. I didn't want this to turn all of their lives upside down too.
I'll be going to Ohio so Kevin can continue his treatment and his job with less travel and, hopefully, less chaos in his treatment weeks. Our last day of daycare will be the Friday before Christmas. I'm closing for the holiday break as usual but I won't be reopening in January.
Hannah caught on to what is happening. She crawled up on my lap to ask, "Who is going to take care of us?"
I don't know, Hannah. Someone wonderful. I'll help your mom find someone wonderful.
There aren't any easy answers and I don't have a plan. Not even a safety pin.
Thursday, October 11, 2007
My List
I have a growing list of concerns. A doctor or clinic can be very capable but still not be a good "fit" for a particular person. I'm not sure this is the best place for Kevin. Maybe it's more general; maybe chemotherapy is like this everywhere. What the hell do I know about it.
A high patient/nurse ratio means a lot of tiring waiting for each patient. Forty-five minutes while an IV beeps notice that it is finished. Another 45 minutes before they get back to him with the infusion pump. His 3 1/2 hour day which had morphed into 4 1/2 hours was actually 5 1/2 hours.
Communication is poor. No explanation about accessing his port this first time. They just did it. No one double checked him and his medicine by name and birth date. No one told him what he was getting, just popped his port and started hanging IV bags. I asked every time and wrote down drugs and times, but the margin for error seems great to me. And we were given no home care instructions. A little information and a hand written phone number for getting help if something comes up with the pump. Nothing about handling nausea or other side effects at home. It felt very strange to be sent out with just a "See ya Wednesday" and a wave.
The oncologist was nowhere to be seen. The nurse practitioner was cutting through the infusion area once and responded to Kevin's nagging IV beep but never even looked at the guy hooked to the machine. Not even a 'hello.' That angered me. It was rude, it showed a complete lack of compassion for what this man was experiencing for the first time today and it was plain and simply bad customer service.
It's crowded and intense in noise and activity. There is really no room for someone to be with a patient although the nurses do not in any way make you feel like you're in the way. But you are. The windows are small and high on the wall which contributes to the closed in feeling. It smells intensely 'chemical' in there.
There's nothing horrible on my list. I know this. Cancer patients are already enduring so much though. They deserve better for having to endure so much for so long with nothing but uncertainty at the outcome. It's not how I want him treated. He's not part of a herd. He's one. My only one and I want them to know this.
I saw more than the effects of chemotherapy itself wearing on Kevin. The whole situation added to his stress. He doesn't need more to get through.
A high patient/nurse ratio means a lot of tiring waiting for each patient. Forty-five minutes while an IV beeps notice that it is finished. Another 45 minutes before they get back to him with the infusion pump. His 3 1/2 hour day which had morphed into 4 1/2 hours was actually 5 1/2 hours.
Communication is poor. No explanation about accessing his port this first time. They just did it. No one double checked him and his medicine by name and birth date. No one told him what he was getting, just popped his port and started hanging IV bags. I asked every time and wrote down drugs and times, but the margin for error seems great to me. And we were given no home care instructions. A little information and a hand written phone number for getting help if something comes up with the pump. Nothing about handling nausea or other side effects at home. It felt very strange to be sent out with just a "See ya Wednesday" and a wave.
The oncologist was nowhere to be seen. The nurse practitioner was cutting through the infusion area once and responded to Kevin's nagging IV beep but never even looked at the guy hooked to the machine. Not even a 'hello.' That angered me. It was rude, it showed a complete lack of compassion for what this man was experiencing for the first time today and it was plain and simply bad customer service.
It's crowded and intense in noise and activity. There is really no room for someone to be with a patient although the nurses do not in any way make you feel like you're in the way. But you are. The windows are small and high on the wall which contributes to the closed in feeling. It smells intensely 'chemical' in there.
There's nothing horrible on my list. I know this. Cancer patients are already enduring so much though. They deserve better for having to endure so much for so long with nothing but uncertainty at the outcome. It's not how I want him treated. He's not part of a herd. He's one. My only one and I want them to know this.
I saw more than the effects of chemotherapy itself wearing on Kevin. The whole situation added to his stress. He doesn't need more to get through.
Wednesday, October 10, 2007
Round One, Cycle 1-1. Done.
My father and Mary came over to stay with the kids while Kevin and I went to the clinic this afternoon to have the infusion pump removed.
He's really tired tonight. Some of it seems to be that he can finally relax and sleep comfortably having gotten through this first round--and having the infusion pump off is a tremendous relief to him. By mid-morning today he was just antsy with anticipation.
We waited a long time at the clinic before someone was able to get to him. The pump was beeping its agreement that it was time to be done. Forty-five minutes is too long for Kevin to sit there for something that should have been a 15 minute event. The nurses are all always busy; there seems to be a large patient to staff ratio.
I am, again, really bothered by the disorganization and poor communication at the clinic. The nurse taking Kevin's vitals asked about his medications. Kevin can't hear when someone talks with their back to him--we have repeatedly mentioned this at appointments. He doesn't like asking for things to be repeated so he just agreed with what she said. I heard a medicine in the list, though, that he doesn't take. I asked about it. The nurse was very insistent that it's a prescription Kevin has even if he hadn't used it--it was listed on his chart. Turns out the nurse practitioner was supposed to prescribe an anti-nausea drug to be filled after that first chemotherapy just in case Kevin needed it at home. That didn't happen, we were sent home with nothing.
I suppose it all worked out since Kevin managed without the drug and since we are commited to him going without extra drugs as much as possible. But what if he HAD needed it in the middle of the night? And it was listed in his records as having been prescribed. I don't want those kind of inaccuracies in Kevin's care and worry about what might be missed when I can't be there to hear for Kevin.
In any case, we got the prescription and had it filled today. Kevin doesn't want to take it but I think it's good to have the Compazine on hand in case he needs it at some point. The prescription was for 100 tablets with 5 refills. Clearly, the clinic expects him to need it.
As far as side effects, the tiredness and the ongoing headache are the most dominant. He feels a little nauseous but thinks that has to do with the headache as much as anything.
Kevin went this morning on his own to see Dr. Francis, his surgeon, for a 6 week check up. I hated being unable to go with him, but I knew he would be fine in the capable hands of Dr. Francis and his office staff. I could only get someone to sub in the daycare for one period in the day and it was better to go with him to the oncology clinic this afternoon.
Dr. Francis says Kevin is doing great--he was impressed with the 2 miles a day Kevin is walking. He reiterated his encouragment about doing chemotherapy as an extra caution. Said something about it almost guaranteeing a cure in Kevin's case.
That's what we want. A cure. An almost guarantee.
He's really tired tonight. Some of it seems to be that he can finally relax and sleep comfortably having gotten through this first round--and having the infusion pump off is a tremendous relief to him. By mid-morning today he was just antsy with anticipation.
We waited a long time at the clinic before someone was able to get to him. The pump was beeping its agreement that it was time to be done. Forty-five minutes is too long for Kevin to sit there for something that should have been a 15 minute event. The nurses are all always busy; there seems to be a large patient to staff ratio.
I am, again, really bothered by the disorganization and poor communication at the clinic. The nurse taking Kevin's vitals asked about his medications. Kevin can't hear when someone talks with their back to him--we have repeatedly mentioned this at appointments. He doesn't like asking for things to be repeated so he just agreed with what she said. I heard a medicine in the list, though, that he doesn't take. I asked about it. The nurse was very insistent that it's a prescription Kevin has even if he hadn't used it--it was listed on his chart. Turns out the nurse practitioner was supposed to prescribe an anti-nausea drug to be filled after that first chemotherapy just in case Kevin needed it at home. That didn't happen, we were sent home with nothing.
I suppose it all worked out since Kevin managed without the drug and since we are commited to him going without extra drugs as much as possible. But what if he HAD needed it in the middle of the night? And it was listed in his records as having been prescribed. I don't want those kind of inaccuracies in Kevin's care and worry about what might be missed when I can't be there to hear for Kevin.
In any case, we got the prescription and had it filled today. Kevin doesn't want to take it but I think it's good to have the Compazine on hand in case he needs it at some point. The prescription was for 100 tablets with 5 refills. Clearly, the clinic expects him to need it.
As far as side effects, the tiredness and the ongoing headache are the most dominant. He feels a little nauseous but thinks that has to do with the headache as much as anything.
Kevin went this morning on his own to see Dr. Francis, his surgeon, for a 6 week check up. I hated being unable to go with him, but I knew he would be fine in the capable hands of Dr. Francis and his office staff. I could only get someone to sub in the daycare for one period in the day and it was better to go with him to the oncology clinic this afternoon.
Dr. Francis says Kevin is doing great--he was impressed with the 2 miles a day Kevin is walking. He reiterated his encouragment about doing chemotherapy as an extra caution. Said something about it almost guaranteeing a cure in Kevin's case.
That's what we want. A cure. An almost guarantee.
Tuesday, October 9, 2007
Happy Birthday, Kevin
Happy Birthday, Kevin!
He worked a long day today of phone and computer conferencing. The conferencing arrangments seem to work well. Although I did notice he likes to pace while he talks on the phone and he has to adjust that tendency to the confines of the infusion pump and tubing.
He's not asleep yet. And he didn't take the afternoon nap we had planned for him. He was playing .
He has a new toy for his birthday.
I wanted him to have a fantastic gift. Something great. Something to distract him a little through the coming months.
I managed to get one of the new apple iTouch things for him. They're not even in stores yet. I don't really know anything about it other than that it's the latest and greatest in electronic gadgetry.
Kev loves electronic gadgetry.
So he's propped up in bed, infusion pump beside him, reading the online manual and programming his iTouch. And eating chocolate covered raspberry jellies.
The side effects of chemotherapy haven't shown up too much. Some annoyances but nothing devastating. It would be nice if things would stay this way.
He has an ongoing headache and some stuffiness. Last night he talked until the wee hours of the morning. Chatted off and on all night, almost non-stop until 3 AM. I think that's from the Decadron they gave him before the infusion to help minimize allergic reactions and nausea. Wires him. He dropped off to a sound sleep about 5 AM, just before I had to get up and start my work day.
He hasn't vomited or even really felt like he would. A little nauseous feeling but able to work through it. He is less hungry but ate the mid-morning and afternoon snacks I prepared to help ward off the nausea that might set in on an empty stomach. He has one small area in his mouth that has developed the cold sensitivity caused by Oxaliplatin.
The infusion pump is an annoyance. A constant reminder of what's going on in his body and a tiring weight to carry non-stop. He is still adjusting it to see what feels least intrusive. We both were nervous last night about getting tangled in the IV tubing while sleeping.
Haylee greeted him this morning with "Daddy Kevin! I love your new purse. It's BEE-YUU-TEE-FUL!"
Haylee got an extra cookie today for the smile she brought to Kevin's face! Haylee's mom scored extra points when she arrived to pick up Haylee and had a sack of Kevin's favorite candy in hand. She drove all the way downtown to McCord's to get it for him.
Today was a good day. He was able to forget about cancer for a little bit and just enjoy his day.
He worked a long day today of phone and computer conferencing. The conferencing arrangments seem to work well. Although I did notice he likes to pace while he talks on the phone and he has to adjust that tendency to the confines of the infusion pump and tubing.
He's not asleep yet. And he didn't take the afternoon nap we had planned for him. He was playing .
He has a new toy for his birthday.
I wanted him to have a fantastic gift. Something great. Something to distract him a little through the coming months.
I managed to get one of the new apple iTouch things for him. They're not even in stores yet. I don't really know anything about it other than that it's the latest and greatest in electronic gadgetry.
Kev loves electronic gadgetry.
So he's propped up in bed, infusion pump beside him, reading the online manual and programming his iTouch. And eating chocolate covered raspberry jellies.
The side effects of chemotherapy haven't shown up too much. Some annoyances but nothing devastating. It would be nice if things would stay this way.
He has an ongoing headache and some stuffiness. Last night he talked until the wee hours of the morning. Chatted off and on all night, almost non-stop until 3 AM. I think that's from the Decadron they gave him before the infusion to help minimize allergic reactions and nausea. Wires him. He dropped off to a sound sleep about 5 AM, just before I had to get up and start my work day.
He hasn't vomited or even really felt like he would. A little nauseous feeling but able to work through it. He is less hungry but ate the mid-morning and afternoon snacks I prepared to help ward off the nausea that might set in on an empty stomach. He has one small area in his mouth that has developed the cold sensitivity caused by Oxaliplatin.
The infusion pump is an annoyance. A constant reminder of what's going on in his body and a tiring weight to carry non-stop. He is still adjusting it to see what feels least intrusive. We both were nervous last night about getting tangled in the IV tubing while sleeping.
Haylee greeted him this morning with "Daddy Kevin! I love your new purse. It's BEE-YUU-TEE-FUL!"
Haylee got an extra cookie today for the smile she brought to Kevin's face! Haylee's mom scored extra points when she arrived to pick up Haylee and had a sack of Kevin's favorite candy in hand. She drove all the way downtown to McCord's to get it for him.
Today was a good day. He was able to forget about cancer for a little bit and just enjoy his day.
Monday, October 8, 2007
Chemotherapy Day 1, Sticky Tape
Kevin is resting. He has a headache and some mild nausea that he thinks is more from the headache than drugs. And the headache is more from being so tired. And he can't seem to quiet himself enough to sleep.
It's like dominoes where one gets knocked over and they all fall in sequence.
The infusion pump bothers him--like being tethered to a toxic anchor.
It was a long day. The 3 1/2 hours that had become 4 1/2 were actually 5 1/2.
It was the small things today that bring me to tears tonight.
They should tell you the small things that will make your patient's chemotherapy day go better. That should be part of someone's job. Not something you learn by doing.
Tha damn sticky tape.
As soon as they inserted that wicked looking huber needle into his port I had a "duh" reality check. This entire apparatus would need to be taped in place. Well taped. 40+ hours worth of tape. Maybe we should have known to shave or Nair the area around his port, but we didn't. When the tape comes off, his hair (still growing in after his port surgery) will come off with it--he's going to have welts the size of mountains.
Someone should tell you that.
I generally consider crying as a waste of good time. A luxury I don't have the time to indulge. Until now. The stupid sticky tape makes me so frustrated I can't stop the over-flow of tears tonight.
It's like dominoes where one gets knocked over and they all fall in sequence.
The infusion pump bothers him--like being tethered to a toxic anchor.
It was a long day. The 3 1/2 hours that had become 4 1/2 were actually 5 1/2.
It was the small things today that bring me to tears tonight.
They should tell you the small things that will make your patient's chemotherapy day go better. That should be part of someone's job. Not something you learn by doing.
Tha damn sticky tape.
As soon as they inserted that wicked looking huber needle into his port I had a "duh" reality check. This entire apparatus would need to be taped in place. Well taped. 40+ hours worth of tape. Maybe we should have known to shave or Nair the area around his port, but we didn't. When the tape comes off, his hair (still growing in after his port surgery) will come off with it--he's going to have welts the size of mountains.
Someone should tell you that.
I generally consider crying as a waste of good time. A luxury I don't have the time to indulge. Until now. The stupid sticky tape makes me so frustrated I can't stop the over-flow of tears tonight.
Sunday, October 7, 2007
Guy Speak
It's been a quiet evening.
Kevin starts chemotherapy tomorrow and we're ignoring it as much as possible.
He says he's not afraid, that he just wants to get it done.
I think that's guy-speak for "I'm scared witless and I don't want to do it."
I know that's what I'm thinking and I'm nowhere near being in his shoes.
Kevin starts chemotherapy tomorrow and we're ignoring it as much as possible.
He says he's not afraid, that he just wants to get it done.
I think that's guy-speak for "I'm scared witless and I don't want to do it."
I know that's what I'm thinking and I'm nowhere near being in his shoes.
Friday, October 5, 2007
Because You Need to Laugh too
My good morning email to Kevin today--because you need to laugh too:
If one of out 4 people gets rectal cancer, 3 of your friends are really relieved right now.
If one of out 4 people gets rectal cancer, 3 of your friends are really relieved right now.
Wednesday, October 3, 2007
Chemotherapy II, a Primer
Chemotherapy Counting. Thought you might like an explanation of some of the terms/numbers we use when talking about Kevin's treatment. The terminology used by the oncologist made a lot more sense to me once I researched the whole idea of treatment "cycles."
Chemotherapy is usually counted in "cycles" which include treatment and a rest period. More about the treatment/rest theory on another day.
In Kevin's treatment, a cycle consists of 2 treatments, each two weeks apart. So he has a treatment period of Monday to Wednesday (his chemotherapy drugs are delivered over 48 hours--an IV drip consisting of 2 chemotherapy drugs at the clinic which takes about 2 hours, a "push" (larger dose injected through the IV over 5 minutes) of another chemotherapy drug, then 46 hours of the same drug infused through the portable pump). Then the infusion pump is disconnected and his body gets 11 days to recover. He has another 48 hours of chemotherapy drugs, 11 days to rest and the cycle is complete.
So a cycle is, roughly, a month for Kevin. More precisely, 28 days, 4 weeks, 2 chemotherapy treatments.
The cycles are recorded like this:
Cycle 1-1 (first treatment)
Cycle 1-15 (second treatment)
Cycle 2-1 (third treatment)
Cycle 2-15 (fourth treatment)
Cycle 3-1 (fifth treatment)...
A common plan for rectal cancer treatment, after surgery, is
2 cycles of chemotherapy (4 treatments)
1 month of no treatment (recovery)
5 to 8 weeks of daily radiation with continuous chemotherapy (through the infusion pump). "Continuous" can mean 5 days a week on the pump or, literally, 7 days a week on the pump, non-stop for the entire 5 - 8 week period--the oncologist decided which way to go.
The radiation period is given a little vaguely on purpose. There is a total amount of treatment that will be given. That total may have to be given in smaller increments depending on how his body reacts.
1 month of no treatment (recovery)
2 cycles of chemotherapy (another 4 treatments)
Something in the neighborhood of an eight month time span (5 to 6 months of active treatment with 2 months of recovery sandwiched inside), not allowing any periods where treatment is delayed because of illness or reactions.
Cancer has expanded our vocabulary. I'm keeping a growing list of word and definition--a cancer glossary--which I'll post another time.
I like lists. A list is almost as good as a plan.
Chemotherapy is usually counted in "cycles" which include treatment and a rest period. More about the treatment/rest theory on another day.
In Kevin's treatment, a cycle consists of 2 treatments, each two weeks apart. So he has a treatment period of Monday to Wednesday (his chemotherapy drugs are delivered over 48 hours--an IV drip consisting of 2 chemotherapy drugs at the clinic which takes about 2 hours, a "push" (larger dose injected through the IV over 5 minutes) of another chemotherapy drug, then 46 hours of the same drug infused through the portable pump). Then the infusion pump is disconnected and his body gets 11 days to recover. He has another 48 hours of chemotherapy drugs, 11 days to rest and the cycle is complete.
So a cycle is, roughly, a month for Kevin. More precisely, 28 days, 4 weeks, 2 chemotherapy treatments.
The cycles are recorded like this:
Cycle 1-1 (first treatment)
Cycle 1-15 (second treatment)
Cycle 2-1 (third treatment)
Cycle 2-15 (fourth treatment)
Cycle 3-1 (fifth treatment)...
A common plan for rectal cancer treatment, after surgery, is
2 cycles of chemotherapy (4 treatments)
1 month of no treatment (recovery)
5 to 8 weeks of daily radiation with continuous chemotherapy (through the infusion pump). "Continuous" can mean 5 days a week on the pump or, literally, 7 days a week on the pump, non-stop for the entire 5 - 8 week period--the oncologist decided which way to go.
The radiation period is given a little vaguely on purpose. There is a total amount of treatment that will be given. That total may have to be given in smaller increments depending on how his body reacts.
1 month of no treatment (recovery)
2 cycles of chemotherapy (another 4 treatments)
Something in the neighborhood of an eight month time span (5 to 6 months of active treatment with 2 months of recovery sandwiched inside), not allowing any periods where treatment is delayed because of illness or reactions.
Cancer has expanded our vocabulary. I'm keeping a growing list of word and definition--a cancer glossary--which I'll post another time.
I like lists. A list is almost as good as a plan.
Monday, October 1, 2007
Officially Back to Work
Kevin returned to work in Ohio today. He wants to get a week in there before officially starting the work at home/work in Ohio plan during chemotherapy.
He's been working full days though since a week or so after his surgery. Phone and computer conferencing, emails.
Very thoughtfully, he text messaged me several times today to let me know all was well. Eased my worries considerably.
He's tired tonight and going to bed early. But he enjoyed being back in the middle of things in person and having the chance to let everyone there know he's doing well.
He's been working full days though since a week or so after his surgery. Phone and computer conferencing, emails.
Very thoughtfully, he text messaged me several times today to let me know all was well. Eased my worries considerably.
He's tired tonight and going to bed early. But he enjoyed being back in the middle of things in person and having the chance to let everyone there know he's doing well.
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