http://www.youtube.com/watch?v=MniOtRnCO9I
http://www.youtube.com/watch?v=tH6sNNJ4u8o
I heard these songs on the radio last night (94.9) and felt like they were speaking to me in this difficult time. I don't really need to say anything, the songs and videos speak for themselves.
Saturday, April 10, 2010
Friday, April 9, 2010
The power of partnership
When Josh was down for the count for the 4-5 days (OK, maybe 6) after the first chemo treatment, I was reminded again how powerful the partnership of marriage is. A few examples...
1. Knowledge. When Josh's folks were in town last weekend, they asked me several things that my answer was, "Josh always handles that - I don't know." Where is the camera cable to download photos to the computer? Josh knows. How do you get to just the news on the TV with the universal remote? Josh knows. He handles all the technology-related and financial-related tasks essentially by himself.
2. Work divided. Josh handles pretty much all things car and lawn/garden related. But last week, I washed and vacuumed both the minivan and the civic SI. I mowed the lawn and attempted to weed-eat the yard, but couldn't keep the machine going. I had to get tips from Josh to try to even get the weed-eater started, but it died part way through. Thanks to work from Josh's dad and his weed-eater from Houston, the yard looks much better. With Josh's return to himself in the last couple of days, the kitchen and counters are back to their clean state. And he even cooked a delicious dinner tonight.
I'm certainly trying hard not to take for granted all the things my significant other does for the family.
1. Knowledge. When Josh's folks were in town last weekend, they asked me several things that my answer was, "Josh always handles that - I don't know." Where is the camera cable to download photos to the computer? Josh knows. How do you get to just the news on the TV with the universal remote? Josh knows. He handles all the technology-related and financial-related tasks essentially by himself.
2. Work divided. Josh handles pretty much all things car and lawn/garden related. But last week, I washed and vacuumed both the minivan and the civic SI. I mowed the lawn and attempted to weed-eat the yard, but couldn't keep the machine going. I had to get tips from Josh to try to even get the weed-eater started, but it died part way through. Thanks to work from Josh's dad and his weed-eater from Houston, the yard looks much better. With Josh's return to himself in the last couple of days, the kitchen and counters are back to their clean state. And he even cooked a delicious dinner tonight.
I'm certainly trying hard not to take for granted all the things my significant other does for the family.
Thursday, April 8, 2010
A New Look
Picture Bill Hader playing General George Armstrong Custer from the movie Night at the Museum 2 as he carefully and slowly brushes his hair:
98...99...Bingo! Like a golden fleece. My hair is currency in certain parts of Europe.Men and their hair.
If you take a moment to stop and take notice there are a lot of men walking around with shaved or bald heads. I was counting the shiny domes one day in 24 Hour Fitness and there are quite a few men who, either by choice or maybe not, have little to no hair on their heads. Clearly, some don't have a choice. Nature does what it does. However, there are those that opt for the maintenance-free hair style and I have joined that seemlingly growing club. With the inevitable departure of either some or all of my hair from the chemo treatment, I elected to dictate the date of the loss of my locks rather than have it handed to me. I just didn't want to wake up one day with a clump of my hair on the pillow.
So on Tuesday the whole family got to participate in shaving Daddy's head.
So on Tuesday the whole family got to participate in shaving Daddy's head.
Anna says I look good. I am still getting used to it. It still takes me by surprise when I catch a glimpse of myself in the mirror. But it certainly has made taking a shower a little quicker.
Normal?
From dictionary.com:
In a previous post, I felt compelled to put the proverbial quotes around the word normal when referring to our lives after Josh's first chemotherapy treatment. Per the definition of the adjective, I wonder what percent of the world would consider themselves or their day to be normal. You?
Tackling each relevant definition from the bottom to the top...
Am I free from any form of disease? As far as I know. But we don't really know what's going on inside our bodies until a symptom appears. And we hope the symptom is obvious enough that we don't dismiss it as something else. In Josh's case, despite feeling healthy up until late last year (at which point only a few symptoms that didn't add up to anything suspicious), a cancer was growing. Maybe someday full body scans will become routine at annual physicals.
Am I sane? Another trip to the dictionary compels me to say "yes." I think my mind is in a fine, healthy state (my inexplicable draw toward horror fiction and non-fiction isn't something new and doesn't categorize as unhealthy, I don't think). Josh may argue that I don't use sound judgment at times, but I'd consider myself to generally have good sense.
Are my days feeling usual and natural? I go to work, I coach the soccer team, I cook dinner, I sit around the table (or in front of the TV during basketball and football seasons or the Friday movie night evenings) with my family to chat and laugh, I clean the house, I eat, I sleep. But underlying it all is the knowledge that Josh has a disease that he's fighting for his life against. That's not usual and not normal. And somehow all my daily activities with the added shadow of cancer become the new normal. How quickly we adjust.
Are you embracing your normal?
nor·mal
/ˈnɔrməl/ [nawr-muhl] –adjective
1. conforming to the standard or the common type; usual; not abnormal; regular; natural.
3. Psychology.
b. free from any mental disorder; sane.
4. Biology, Medicine/Medical.
a. free from any infection or other form of disease or malformation, or from experimental therapy or manipulation.
In a previous post, I felt compelled to put the proverbial quotes around the word normal when referring to our lives after Josh's first chemotherapy treatment. Per the definition of the adjective, I wonder what percent of the world would consider themselves or their day to be normal. You?
Tackling each relevant definition from the bottom to the top...
Am I free from any form of disease? As far as I know. But we don't really know what's going on inside our bodies until a symptom appears. And we hope the symptom is obvious enough that we don't dismiss it as something else. In Josh's case, despite feeling healthy up until late last year (at which point only a few symptoms that didn't add up to anything suspicious), a cancer was growing. Maybe someday full body scans will become routine at annual physicals.
Am I sane? Another trip to the dictionary compels me to say "yes." I think my mind is in a fine, healthy state (my inexplicable draw toward horror fiction and non-fiction isn't something new and doesn't categorize as unhealthy, I don't think). Josh may argue that I don't use sound judgment at times, but I'd consider myself to generally have good sense.
Are my days feeling usual and natural? I go to work, I coach the soccer team, I cook dinner, I sit around the table (or in front of the TV during basketball and football seasons or the Friday movie night evenings) with my family to chat and laugh, I clean the house, I eat, I sleep. But underlying it all is the knowledge that Josh has a disease that he's fighting for his life against. That's not usual and not normal. And somehow all my daily activities with the added shadow of cancer become the new normal. How quickly we adjust.
Are you embracing your normal?
Monday, April 5, 2010
Day 5???
Let's see.. is it day 5? I guess it is. Things are slowly getting better. That chemo really set me back a spell. Nasty stuff it is. Appetite is returning, although sweets still taste a bit off. Salty foods are doing much better. Constipation has been an ongoing issue. Clarity of mind has also been questionable. There will be moments of lucidity and then I will slip back off into a fog. Want to sleep a lot, but am forcing myself to get up and take walks around the block. Actually went to a job site and did a little bit of work today before knocking off shortly after noon. Pain levels are lower than before the chemo. My back hardly even causes me any problems any more. Don't know if that is because of the modified pain medication or something else. Support has been outstanding. Anna's dad was a big help taking care of the kids while we were down in Houston to get the treatment. My parents were up here this past Easter weekend and my "doctor" brother calls almost every day to check in.
It's been said to me that I can know the chemo is working because of the side effects. Don't know if that is true or not but I hope so.
Thanks again for all your thoughts and prayers.
It's been said to me that I can know the chemo is working because of the side effects. Don't know if that is true or not but I hope so.
Thanks again for all your thoughts and prayers.
Upright
I walked into the house this morning after my early morning workout to be greeted by an upright and smiling Josh. Sure nice to see him that way after 5 days of couch-sitting, focusing on not vomiting, walking slowly and wobbly-kneed around the block, and eating nothing more than a few crackers, bits of banana and spoonfuls of ice cream. He's not back to himself completely, but certainly on the road there.
His pain is being managed well now, which is a real blessing. Now it's back to a "normal" couple of weeks before we head down to MD Anderson again for the second round of chemotherapy on April 21st at 11:30am. This time we'll probably take the whole family for an extended weekend in Houston. Not surprisingly, the kids are eager to take a few days off from school.
"Normal" today means that Josh actually worked at a customer site with help from his dad (who stayed in town for an extra day after the Easter weekend to be able to help).
Here's to more upright days!
His pain is being managed well now, which is a real blessing. Now it's back to a "normal" couple of weeks before we head down to MD Anderson again for the second round of chemotherapy on April 21st at 11:30am. This time we'll probably take the whole family for an extended weekend in Houston. Not surprisingly, the kids are eager to take a few days off from school.
"Normal" today means that Josh actually worked at a customer site with help from his dad (who stayed in town for an extra day after the Easter weekend to be able to help).
Here's to more upright days!
Friday, April 2, 2010
Chemotherapy - Day 3
Since Josh's pain is still hovering around a 1, he's not driven to take his pain medication right at 7:00 like he has been for weeks now. That's good.
No, that's bad (at least sort of). He needs to keep on the every-12-hour cycle for the extended release to continue to work. But the nausea makes him want to do pretty much anything other than swallow some pills. He chokes down some banana despite saying that anything that doesn't go right down the throat increases his gag reflex and makes it very hard to swallow. Liquid diet it is. But even that's not working very well. Josh manages to choke down some, but not what he needs.
Although he spends the majority of the day on the couch again, alternating between lying down and sitting up for brief periods of time, he does take a walk around the block, sits outside for a while to get a good dose of Vitamin D, and occasionally walks around inside to stretch his legs.
We're hoping Day 4 is a better day.
No, that's bad (at least sort of). He needs to keep on the every-12-hour cycle for the extended release to continue to work. But the nausea makes him want to do pretty much anything other than swallow some pills. He chokes down some banana despite saying that anything that doesn't go right down the throat increases his gag reflex and makes it very hard to swallow. Liquid diet it is. But even that's not working very well. Josh manages to choke down some, but not what he needs.
Although he spends the majority of the day on the couch again, alternating between lying down and sitting up for brief periods of time, he does take a walk around the block, sits outside for a while to get a good dose of Vitamin D, and occasionally walks around inside to stretch his legs.
We're hoping Day 4 is a better day.
Chemotherapy - Day 2 Part 2
Josh gets in for accupuncture at 12:15pm with needles in a few other places to combat nausea and help things flow through his system correctly. Then we make a stop at his parents' farm before driving back home. Josh is still very nauseous despite the medications to help try to stem that, but the pain is at a constant 1 now (with 10 being the worst). We're thankful that he's not dealing with both pain AND nausea.
For the trip home, I've arranged a bed in the back of the van with the two base couch cushions he's been sleeping on since his lower back pain forced him out of a regular bed. Thanks to the eye mask that the hotel provided (along with ear plugs and lavendar linen spray), Josh sleeps pretty soundly all the way to Navarro. It's 7:00pm and time for his every-12-hours medications so he needs some food. A strawberry shake is about all that sounds good, but it take a bit of just resting there in the parking lot in the back of the van to ensure that he can keep the medication down.
The last hour of the drive had Josh staring in one spot to attempt to not have to use the "barf bag" that his folks sent along with us. At home, he crawls onto the couch and stays in the dark for over an hour.
My sister, Eve, and her family gave Josh the gift of movies recently (thanks!), so the kids wanted to watch one of the new deliveries (or Fletch to ensure that when their cousin is in town for Easter, they can watch Fletch Lives and "understand the story line."). Old Dogs it is. It gets Josh laughing a bit.
The next chemotherapy is already scheduled for April 21 at 11:30am and we've decided to try to come home immediately after the treatment so that he can be sick at home instead of having to be sick ON the way home. We figure we have about a 4-hour window before he starts feeling nauseous, if this first try becomes the pattern.
End of day 2.
For the trip home, I've arranged a bed in the back of the van with the two base couch cushions he's been sleeping on since his lower back pain forced him out of a regular bed. Thanks to the eye mask that the hotel provided (along with ear plugs and lavendar linen spray), Josh sleeps pretty soundly all the way to Navarro. It's 7:00pm and time for his every-12-hours medications so he needs some food. A strawberry shake is about all that sounds good, but it take a bit of just resting there in the parking lot in the back of the van to ensure that he can keep the medication down.
The last hour of the drive had Josh staring in one spot to attempt to not have to use the "barf bag" that his folks sent along with us. At home, he crawls onto the couch and stays in the dark for over an hour.
My sister, Eve, and her family gave Josh the gift of movies recently (thanks!), so the kids wanted to watch one of the new deliveries (or Fletch to ensure that when their cousin is in town for Easter, they can watch Fletch Lives and "understand the story line."). Old Dogs it is. It gets Josh laughing a bit.
The next chemotherapy is already scheduled for April 21 at 11:30am and we've decided to try to come home immediately after the treatment so that he can be sick at home instead of having to be sick ON the way home. We figure we have about a 4-hour window before he starts feeling nauseous, if this first try becomes the pattern.
End of day 2.
Thursday, April 1, 2010
Chemotherapy - Day 2 Part 1
Josh sleeps well until about 5am when I wake up hearing him call my name. He's nauseous and wants one of the immediate-effect dissolve-in-your mouth pills that he was given yesterday, as well as one of the every-4-hours pain medications since he's uncomfortable again.
I doze off again until about 7:00am and see he's still lying in bed (not sleeping), but still looking uncomfortable. Nausea is a problem - the pill only helped a little. Since the pain medications that he's to take must be taken with food, I quickly get dressed and get two to-go containers of the free breakfast buffet downstairs. The hostess has seen enough patients cycling through the hotel to not be surprised at or discouraging to my request. Josh isn't really hungry, but forces himself to eat enough fruit and bacon to also down the three pills which are to help with the pain and nausea. He's chugging lots of water and juice as instructed to keep the fluids moving through his body, flushing his kidneys.
And now he rests. He has slept pretty much the whole morning while I try to get some work done (hopefully all my typing isn't bothering him too much; thankfully the fan in the room is nice and loud to block out a lot of noise). We're going to get him in for one more accupuncture treatment before we make the trek back home this afternoon.
I doze off again until about 7:00am and see he's still lying in bed (not sleeping), but still looking uncomfortable. Nausea is a problem - the pill only helped a little. Since the pain medications that he's to take must be taken with food, I quickly get dressed and get two to-go containers of the free breakfast buffet downstairs. The hostess has seen enough patients cycling through the hotel to not be surprised at or discouraging to my request. Josh isn't really hungry, but forces himself to eat enough fruit and bacon to also down the three pills which are to help with the pain and nausea. He's chugging lots of water and juice as instructed to keep the fluids moving through his body, flushing his kidneys.
And now he rests. He has slept pretty much the whole morning while I try to get some work done (hopefully all my typing isn't bothering him too much; thankfully the fan in the room is nice and loud to block out a lot of noise). We're going to get him in for one more accupuncture treatment before we make the trek back home this afternoon.
Chemotherapy - Day 1
It's a full day (Wednesday, March 31, 2010) that will include the "cutting" that Josh has been looking forward to since he first found out about his noma in February.
1. Morning preparation. He's up before me to get a workout in before the free buffet breakfast and the ride on the free shuttle to the clinic. Even though this is only the second time we're going to MD Anderson, we feel like experts compared to the other youngish couple also riding on the shuttle who are here for their first appointment. It's somewhat disconcerting how quickly we've learned our way around inside the large main building: what floors to go to, where the cafe is, which elevator is best to use to get to each area we need to visit.
2. Blood work. At 8am, we enter the laboratory area that's packed with people. We sign in and sit for just a few minutes before his name is called, along with 4 others. They line up and are each dispersed into a separate room, stuck, drawn and dismissed. Efficiency.
3. Wait. First we wait in the main waiting area for our 9:30am doctor appointment. Josh plays games on his iPhone as I work on one of the many puzzles that are placed around all the waiting areas throughout the building. Isaac joins us after he finishes his 8:00am class over at UT Houston medical school. We're called in pretty much right on time, but wait in the small room until nearly 11:30am to finally see our nurse practitioner (with whom Isaac jokes that "we're not here for the customer service, we're here for the brains").
4. Doctor visit. The doctor has some concern about a potential clot and entry into a vessel in his chest. They don't want to add any blood thinning agent on top of the chemo because of other risks, so they'll just watch that closely over time. But after a manual checkover, he proclaims Josh ready to take on the rigors of chemotherapy with the most aggressive form of treatment he can prescribe. He assures Josh that he is anything but average when it comes to this noma and that he is "an Olympic athlete" in relation to the typical 70-year old who is fighting this kind of noma.
5. Pharmacy. We have a list of 6 medicines that Josh has to pick up at the pharmacy in the clinic (a change in pain management and new drugs to help reduce nausea), enough that fit into a medium-sized brown paper bag. Sadly, even though I feel like his bag is huge, it's not nearly as large as several others that are grocery bag sized. Everything is relative.
And as we leave the elevator to enter the 9th floor (where the pharmacy is), I notice (but Josh and Isaac don't) a mother with a small boy (maybe 3?) in a stroller. With the telltale bald head and ID bracelet, the boy is clearly going through chemo as well. Sadly, cancer affects people of all ages and, despite the sadness that Josh has to go through this at 38, he's nowhere near the youngest. Everything is relative.
6. Lunch. MD Anderson has a nice cafeteria with lots of options. After a brief hesitation, Josh goes for a selection that is not on his "healthy" list (sausage and pepperoni pizza), but complements it with an orange, a plum and a V8 drink with many different vegetable and fruit juices.
7. An attempt at a movie with a welcome interruption. Since Josh's chemo isn't scheduled until 6:00pm (with 7 hours it puts us at a not-so-welcoming 1:00am finish), Josh and Isaac head out to go see a 2:45pm movie to pass the time and hopefully laugh a bit (the selection is She's Out of My League). I choose to stay at the hospital to get some work done. But as I start to get settled into a desk and get connected on the laptop, I get a call from Josh saying that they were able to fit him into chemo at 3:00pm and they've turned around and will be there momentarily. A blessing to know we'll be done at 10pm rather than 1am.
8. Chemotherapy. The actual chemo administration was surprisingly uneventful. 7 hours of Josh lying in bed with an IV in his arm, watching funny movies with Isaac, listening to one of Isaac's funny podcasts from his library, talking with Abe and Lynne, eating. We leave Josh alone at one point to give him some space and quiet. He's chipper and nearly pain free (which has been quite unusual for quite some time and we're not quite sure why).
9. Immediate aftermath. Josh is all done at around 11pm and walks down the hallway without the limp he's developed over the last couple of weeks due to pain. Pain is being managed well right now...we hope it's a harbinger for what's to come. Josh is feeling so good and is so convinced that he won't suffer any side effects that he wants to bet me something. I don't take the bet because I want to put all I've got toward the most positive outcome possible.
End of day 1.
1. Morning preparation. He's up before me to get a workout in before the free buffet breakfast and the ride on the free shuttle to the clinic. Even though this is only the second time we're going to MD Anderson, we feel like experts compared to the other youngish couple also riding on the shuttle who are here for their first appointment. It's somewhat disconcerting how quickly we've learned our way around inside the large main building: what floors to go to, where the cafe is, which elevator is best to use to get to each area we need to visit.
2. Blood work. At 8am, we enter the laboratory area that's packed with people. We sign in and sit for just a few minutes before his name is called, along with 4 others. They line up and are each dispersed into a separate room, stuck, drawn and dismissed. Efficiency.
3. Wait. First we wait in the main waiting area for our 9:30am doctor appointment. Josh plays games on his iPhone as I work on one of the many puzzles that are placed around all the waiting areas throughout the building. Isaac joins us after he finishes his 8:00am class over at UT Houston medical school. We're called in pretty much right on time, but wait in the small room until nearly 11:30am to finally see our nurse practitioner (with whom Isaac jokes that "we're not here for the customer service, we're here for the brains").
4. Doctor visit. The doctor has some concern about a potential clot and entry into a vessel in his chest. They don't want to add any blood thinning agent on top of the chemo because of other risks, so they'll just watch that closely over time. But after a manual checkover, he proclaims Josh ready to take on the rigors of chemotherapy with the most aggressive form of treatment he can prescribe. He assures Josh that he is anything but average when it comes to this noma and that he is "an Olympic athlete" in relation to the typical 70-year old who is fighting this kind of noma.
5. Pharmacy. We have a list of 6 medicines that Josh has to pick up at the pharmacy in the clinic (a change in pain management and new drugs to help reduce nausea), enough that fit into a medium-sized brown paper bag. Sadly, even though I feel like his bag is huge, it's not nearly as large as several others that are grocery bag sized. Everything is relative.
And as we leave the elevator to enter the 9th floor (where the pharmacy is), I notice (but Josh and Isaac don't) a mother with a small boy (maybe 3?) in a stroller. With the telltale bald head and ID bracelet, the boy is clearly going through chemo as well. Sadly, cancer affects people of all ages and, despite the sadness that Josh has to go through this at 38, he's nowhere near the youngest. Everything is relative.
6. Lunch. MD Anderson has a nice cafeteria with lots of options. After a brief hesitation, Josh goes for a selection that is not on his "healthy" list (sausage and pepperoni pizza), but complements it with an orange, a plum and a V8 drink with many different vegetable and fruit juices.
7. An attempt at a movie with a welcome interruption. Since Josh's chemo isn't scheduled until 6:00pm (with 7 hours it puts us at a not-so-welcoming 1:00am finish), Josh and Isaac head out to go see a 2:45pm movie to pass the time and hopefully laugh a bit (the selection is She's Out of My League). I choose to stay at the hospital to get some work done. But as I start to get settled into a desk and get connected on the laptop, I get a call from Josh saying that they were able to fit him into chemo at 3:00pm and they've turned around and will be there momentarily. A blessing to know we'll be done at 10pm rather than 1am.
8. Chemotherapy. The actual chemo administration was surprisingly uneventful. 7 hours of Josh lying in bed with an IV in his arm, watching funny movies with Isaac, listening to one of Isaac's funny podcasts from his library, talking with Abe and Lynne, eating. We leave Josh alone at one point to give him some space and quiet. He's chipper and nearly pain free (which has been quite unusual for quite some time and we're not quite sure why).
9. Immediate aftermath. Josh is all done at around 11pm and walks down the hallway without the limp he's developed over the last couple of weeks due to pain. Pain is being managed well right now...we hope it's a harbinger for what's to come. Josh is feeling so good and is so convinced that he won't suffer any side effects that he wants to bet me something. I don't take the bet because I want to put all I've got toward the most positive outcome possible.
End of day 1.
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