No pain, no gain. That's a phrase that we probably have all heard. Posted on walls in high school weight rooms across the country, it encourages us to push ourselves one step further, to do one more rep. However, in my situation pain was a red flair signaling something drastically wrong. It screamed that something was not right in my body. At first I tried to cope with pain. I was doing exercises to address what I thought was the source of pain. I took medicine to minimize the pain and help me get through the day. But the pain grew and spread and this pain would not be denied. It started in the shoulder, then dropped down into my lower back, and eventually spread to my entire pelvic region and knees.
The other day I flashed back to when I was sitting a room at Baylor in Plano waiting for my first biopsy. Anna was with me and I was dressed in the stupid hospital gown lying in a bed waiting for my turn. But the thing that came back to me the most was the pain. I was lying there in intense pain. On the wall beside the bed was a picture of 10 simple faces with different expressions. They were expressions ranging from happy to very upset based on your level of discomfort due to pain. Now I have no idea how my pain threshold stacks up in comparison to others, but on that particular day I was a good solid 8, with 10 being the worst. In fact, because the surgery was running behind, I had to have the nurse administer some serious pain medication just so that I could tolerate being in that bed. The cancer that had invaded my body must be doing some serious damage to inflict the pain I was feeling.
After a couple of visits with the oncologist and a little bit of tinkering around, we finally settled on a regiment of medications that masked the pain and, as Anna likes to say, let "Happy Josh" emerge (not drug-happy, just back to normal). She could tell without a doubt when my pain medications were wearing off and that pain cloud swept in to change my disposition. I was taking a combination of morphine and other pills to make my life normal. But I knew that these meds were just blocking the pain signals from reaching my brain. Inside my body the battle was still raging. The cancer was still there causing damage and pain even if I couldn't feel it.
I have had two rounds of chemo to date. At the last doc appointment it was discussed that the course of treatment the doc had prescribed was the maximum dose of the two poisons they inject into my veins every three weeks. Then he threw in another drug called Zometa for good measure. I also continued to take my pain meds. Twice a day I would swallow my regiment of little pills. (By the way, trying to swallow a bunch of pills when you are nauseous and sick from chemo is not fun.)
Two rounds of chemo: is it working?
I have a way to test it. Back off the pain meds. Open up that information highway in my body and see if the pain signals are still as bad as rush hour on Monday morning. Theoretically, if the cancer is winning the battle against the chemo, then surely the pain level will return to at least what it had been before I started treatment. Although there are a lot of variables going on, it seems like a viable test. So I started by cutting the dose of morphine in half for the morning regiment. Then cut the morphine in half for the evening regiment also. I then bumped the naproxen down from the prescription strength 500mg to the OTC dose of 220mg for the morning round. Then down to 220mg for the evening also. Two days ago I cut out the morphine all together. Yesterday I took one 220mg of naproxen and that was it.
The result? My pain level is a 1, maybe it creeps up to a 2 every once in a while. I am sleeping in positions that weren't tolerable for over 6 months. I am sitting at the computer for extended periods of time without any discomfort. No pain, GREAT GAIN? Don't know. Like I said, I don't know the scientific merit of this little experiment, but at face value it sure sounds good.
Is the chemo destroying the cancer that has permeated my insides? I sure hope so.
Friday, April 30, 2010
Thursday, April 29, 2010
Motivations
Over the nearly 10 years that we've lived in our house in Murphy, Josh has spent countless hours creating a landscape that makes passersby look and point and admire. He's read numerous books and magazines on plants, researching native Texas plants specifically. When the kids were in grade school he was the Environmental Chair of the PTA for 2 years and during that time created two gardens around the school and ran two native plant sales.
Then for a long time, he didn't do much of anything with the yard at all. Suddenly this week, the thoughts of creating an even more beautiful environment in our front and back yards have tremendous motivating power for him right now. That and redoing our kitchen as he's dreamed about for ages (that's a subject for another post).
Here's Josh's front yard creation right now:
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According to Josh, the new plants grounded yesterday will be big enough to appreciate within a couple of months.
Here's Josh in his new outfit to protect him from the sun while he spends time gardening:
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Gardening and remodeling are big motivators for Josh right now. Nice to see him smiling, excited, energetic and determined.
Then for a long time, he didn't do much of anything with the yard at all. Suddenly this week, the thoughts of creating an even more beautiful environment in our front and back yards have tremendous motivating power for him right now. That and redoing our kitchen as he's dreamed about for ages (that's a subject for another post).
Here's Josh's front yard creation right now:
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According to Josh, the new plants grounded yesterday will be big enough to appreciate within a couple of months.
Here's Josh in his new outfit to protect him from the sun while he spends time gardening:
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Gardening and remodeling are big motivators for Josh right now. Nice to see him smiling, excited, energetic and determined.
Tuesday, April 27, 2010
Jumping the gun
Okay, maybe I got a little ahead of myself on the recovery timeline. Actual recovery time for the second round will probably be very similar to the first round. Yesterday still had some chemo-head and ringing in the ears. Today, still having some stomach issues. However, given that I have been told that chemo treatments tend to have a cumulative effect, the fact that I will recover in the same amount of time as the first round should be considered a positive.
Also, found something that really got me going in a positive way today. With the B E A-utiful* weather we have been having, I caught a bit of the landscaping bug again. I originally landscaped our yard a few years ago, but really haven't done anything with it since (other than routine maintenance like my dad and brother helped us do a couple months back). With a wave of green enthusiasm, I went to my favorite nursery and spent some money on some plants. Felt like a kid in a candy store. On the way home I even picked me up a really nice outdoor breathing fabric, 30 UV sun block, old-geezer, long sleeve gardening shirt so that I can spend some of the day outside tomorrow plopping the plants in the ground. Will have my flpppy brimmed hat on also so my bald head doesn't get burned. Should be some good fun!
* Oft stated word by Jim Carrey's character in the movie Yes Man.
Also, found something that really got me going in a positive way today. With the B E A-utiful* weather we have been having, I caught a bit of the landscaping bug again. I originally landscaped our yard a few years ago, but really haven't done anything with it since (other than routine maintenance like my dad and brother helped us do a couple months back). With a wave of green enthusiasm, I went to my favorite nursery and spent some money on some plants. Felt like a kid in a candy store. On the way home I even picked me up a really nice outdoor breathing fabric, 30 UV sun block, old-geezer, long sleeve gardening shirt so that I can spend some of the day outside tomorrow plopping the plants in the ground. Will have my flpppy brimmed hat on also so my bald head doesn't get burned. Should be some good fun!
* Oft stated word by Jim Carrey's character in the movie Yes Man.
Sunday, April 25, 2010
A new way of eating
I went shopping at the grocery store this weekend and was struck by how differently we're eating these days. We weren't eating badly previously (lots of fruits and veggies, limited sweets, limited highly processed snacks, desserts fairly infrequently, etc.), but we're making even more of an effort to make the best choices possible.
The more you read, the more you know. Josh is reading Anti-Cancer: A New Way of Life by Dr. David Servan-Schreiber, a doctor who has survived his brain cancer for 15+ years by what he attributes to a healthy diet and lifestyle (in addition to typical Western medicine) - a change he made only after he was initially diagnosed. We all have cancer cells in our bodies that we're continuously fighting off, but some of us are unable to continue waging the war successfully. Tumors grow and cancer spreads. We are also hearing more reports about the dangers of canned food and heating foods in plastics (BPAs), too much folic acid (in cereals) and other such dietary risks.
Makes it pretty hard to find the right food to eat. But we're trying...and feeling much better for the healthy choices we're making.
So on our grocery list this weekend:
1. Christopher eggs (660mg Omega-3 Egg, the highest level of any all natural egg available in US)
2. Organic crackers for snacking (no sugar, no bad oils and no trans fat)
3. Oikos yogurt (all natural with no added sugar)
4. Lots of fresh fruits and vegetables, the edible skins of which we wash with a combination of vinegar and lemon juice.
5. Mediterranean pizza with tomatoes, red onions, olive oil, spinach, etc., on a flax seed crust.
6. Sugar free bread and even experimenting with some flourless breads.
7. Frozen vegetables. Canned green beans in particular are the worst at absorbing dangerous levels of BPA.
We're also trying to be much smarter about where we go when we go out and what we eat when we're there. Josh is such a regular at the local Greek restaurant, Deno's Grill, that the owner knows him on site and is keeping a bottle of olive oil with Josh's name on it to use for his Greek salads instead of the typical vegetable oil.
The traditional American diet (which other "Westernized" countries have unfortunately adopted as well) is very likely contributing to not only rampant obesity, but increased incident of cancer.
Josh is certainly doing his part to fight his cancer from all angles and his family is certainly benefiting from this change as well. After his second round of chemo, it's taken Josh two fewer days to feel good again (only 4 days total downtime this round compared to 6+ last time). Some of that is do to a modified drug plan, but I'm convinced that some of it is also due to his modified eating habits.
Here's to a new way of eating!
The more you read, the more you know. Josh is reading Anti-Cancer: A New Way of Life by Dr. David Servan-Schreiber, a doctor who has survived his brain cancer for 15+ years by what he attributes to a healthy diet and lifestyle (in addition to typical Western medicine) - a change he made only after he was initially diagnosed. We all have cancer cells in our bodies that we're continuously fighting off, but some of us are unable to continue waging the war successfully. Tumors grow and cancer spreads. We are also hearing more reports about the dangers of canned food and heating foods in plastics (BPAs), too much folic acid (in cereals) and other such dietary risks.
Makes it pretty hard to find the right food to eat. But we're trying...and feeling much better for the healthy choices we're making.
So on our grocery list this weekend:
1. Christopher eggs (660mg Omega-3 Egg, the highest level of any all natural egg available in US)
2. Organic crackers for snacking (no sugar, no bad oils and no trans fat)
3. Oikos yogurt (all natural with no added sugar)
4. Lots of fresh fruits and vegetables, the edible skins of which we wash with a combination of vinegar and lemon juice.
5. Mediterranean pizza with tomatoes, red onions, olive oil, spinach, etc., on a flax seed crust.
6. Sugar free bread and even experimenting with some flourless breads.
7. Frozen vegetables. Canned green beans in particular are the worst at absorbing dangerous levels of BPA.
We're also trying to be much smarter about where we go when we go out and what we eat when we're there. Josh is such a regular at the local Greek restaurant, Deno's Grill, that the owner knows him on site and is keeping a bottle of olive oil with Josh's name on it to use for his Greek salads instead of the typical vegetable oil.
The traditional American diet (which other "Westernized" countries have unfortunately adopted as well) is very likely contributing to not only rampant obesity, but increased incident of cancer.
Josh is certainly doing his part to fight his cancer from all angles and his family is certainly benefiting from this change as well. After his second round of chemo, it's taken Josh two fewer days to feel good again (only 4 days total downtime this round compared to 6+ last time). Some of that is do to a modified drug plan, but I'm convinced that some of it is also due to his modified eating habits.
Here's to a new way of eating!
Saturday, April 24, 2010
To-Do Lists
Josh loves to-do lists. He has scores of them lining the pages of each notebook that passes through his hands, first blank throughout and then gradually filled up with notes about woodworking, phone numbers of people to contact, the occasional drawing from Katelyn, and...to-do lists.
In the low time of his chemotherapy cycle (the first 5 to 6 days after the treatment), Josh's to-do list looks radically different from those created at any other time. Today's to-list included six things:
* Finish the design on the next work project
* Three household chores
* Walk around the block 3 times
* Shave head
The only one checked off at the end of the day was the last one, and it didn't serve to cheer Josh up any. I crossed off two of the three household chores. The others remain undone. And that's OK.
Josh, here's your to-do list for tomorrow:
1. Sleep in as long as possible.
2. Hang out on the couch all day, thinking positively and eating what you can as often as you can.
3. Optionally take a walk around the block, preferably once the sun comes out again so you can get your dose of Vitamin D.
In the low time of his chemotherapy cycle (the first 5 to 6 days after the treatment), Josh's to-do list looks radically different from those created at any other time. Today's to-list included six things:
* Finish the design on the next work project
* Three household chores
* Walk around the block 3 times
* Shave head
The only one checked off at the end of the day was the last one, and it didn't serve to cheer Josh up any. I crossed off two of the three household chores. The others remain undone. And that's OK.
Josh, here's your to-do list for tomorrow:
1. Sleep in as long as possible.
2. Hang out on the couch all day, thinking positively and eating what you can as often as you can.
3. Optionally take a walk around the block, preferably once the sun comes out again so you can get your dose of Vitamin D.
Friday, April 23, 2010
Round 2 - Day 3
Doing about as well as day 2. Unfortunately, I have had the same fungal coating develop on my tongue that happened after round 1 and it affects the taste of everything. Not something I need right now. The nausea affects my appetite enough as it is. But I would still say I am ahead of where I was after round 1 and that is a good thing.
I plan on going for a walk around the block a couple of times today...got to get the legs going a bit. Also plan on shaving the head again. The hair has really started falling out. I originally shaved it in preparation for this moment, but it is a little more disconcerting than I thought it would be to actually have it happen. I know the docs told me this would happen and that it would grow back, but it is just another step that has made this whole thing even more real. Hopefully, I can keep my weak goatee and eyebrows - will make losing what I have up top easier.
One of the other big differences this go around is the lack of the chemo-head syndrome. I am not sitting around in a fog this time. My thought processes are much clearer this time. And one thought that keeps going through my head is "I AM GOING TO BEAT THIS CANCER!!!"
I plan on going for a walk around the block a couple of times today...got to get the legs going a bit. Also plan on shaving the head again. The hair has really started falling out. I originally shaved it in preparation for this moment, but it is a little more disconcerting than I thought it would be to actually have it happen. I know the docs told me this would happen and that it would grow back, but it is just another step that has made this whole thing even more real. Hopefully, I can keep my weak goatee and eyebrows - will make losing what I have up top easier.
One of the other big differences this go around is the lack of the chemo-head syndrome. I am not sitting around in a fog this time. My thought processes are much clearer this time. And one thought that keeps going through my head is "I AM GOING TO BEAT THIS CANCER!!!"
Thursday, April 22, 2010
Round 2 - Day 2
Well, I think we learned a lot from round one of the chemo. Here I am the day after round 2, upright, alert and typing at the desk after having just eaten some breakfast. That was not even close to possible after round one. I have so many variables going on with all the pills and such that sometimes it is hard to pinpoint what causes the beneficial outcomes. If I were to hazard a guess, though, it would be a new drug I am trying called ABH that supposedly only MD Anderson manufactures. Some credit also probably goes to something as simple as over-the-counter Pepcid to control the severe heartburn that I got after round one. As it was, that heartburn really affected my eating habits, which in turn just helped to facilitate the downward spiral.
I have made it a habit now of repeating to myself at least 20 times a day that "I am going to beat this cancer." I have read too many stories about how somebody's attitude has made a drastic difference in their battle with his/her noma. And I have to admit that throughout my life I would not characterize myself as an optomist. But when it comes to this, I have to force myself. I have a picture hanging above my monitor for me to see every day of my kids when they were younger giving me a big hug. Ethan on my right and Kate on my left with big smiles on their faces and arms wrapped around my neck.
Thanks again for all your thoughts and prayers and keep 'em coming.
I have made it a habit now of repeating to myself at least 20 times a day that "I am going to beat this cancer." I have read too many stories about how somebody's attitude has made a drastic difference in their battle with his/her noma. And I have to admit that throughout my life I would not characterize myself as an optomist. But when it comes to this, I have to force myself. I have a picture hanging above my monitor for me to see every day of my kids when they were younger giving me a big hug. Ethan on my right and Kate on my left with big smiles on their faces and arms wrapped around my neck.
I look at this picture and I say to myself "I AM GOING TO BEAT THIS CANCER!!!"
Thanks again for all your thoughts and prayers and keep 'em coming.
Wednesday, April 21, 2010
Hangin' at MD Anderson
I waited patiently until Josh published a blog post before doing another...it is HIS blog, after all. :)
We're hanging out at MD Anderson again today. Josh asked if anyone would volunteer to take the chemo instead of him and I said that I gladly would. But, alas, I'm on the other side watching and trying to help as I can. Chemo started late today - 1:00pm instead of 11:30am as scheduled. With our plan to drive home immediately after the treatment, that makes it a very late night. I sure wish MD Anderson had more couches than chairs. But I need to work rather than nap right now, so I've gone to my favorite place here (10th floor down from Elevator A at a desk by a gurgling fish tank) to focus on finalizing the push of a new release and planning the next.
Josh, meanwhile, is watching a movie with his brother Isaac and his wife Katie:
And making occasional jaunts down the hallway to break up the monotony of lying in bed for 7 hours straight, with his machine right with him (Katie has dubbed it "Wallace" as in William Wallace from the movie Braveheart. Josh's mom sent him off via phone this morning with "go into battle strong" so it's very apt nickname).
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Back to hangin'...
We're hanging out at MD Anderson again today. Josh asked if anyone would volunteer to take the chemo instead of him and I said that I gladly would. But, alas, I'm on the other side watching and trying to help as I can. Chemo started late today - 1:00pm instead of 11:30am as scheduled. With our plan to drive home immediately after the treatment, that makes it a very late night. I sure wish MD Anderson had more couches than chairs. But I need to work rather than nap right now, so I've gone to my favorite place here (10th floor down from Elevator A at a desk by a gurgling fish tank) to focus on finalizing the push of a new release and planning the next.
Josh, meanwhile, is watching a movie with his brother Isaac and his wife Katie:
And making occasional jaunts down the hallway to break up the monotony of lying in bed for 7 hours straight, with his machine right with him (Katie has dubbed it "Wallace" as in William Wallace from the movie Braveheart. Josh's mom sent him off via phone this morning with "go into battle strong" so it's very apt nickname).
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Back to hangin'...
Round 2
Strange. This is supposed to be my blog documenting my journey with my noma and I haven't typed anything in a while. That may be in part because Anna is so efficient that she seems to blog at 2 to 3 times the rate I do and steals all the good topics. And she is even working full time. Nonetheless, she keeps telling me my "fans" want to hear from me. Not really sure about that, but here is an entry anyway.
I have come across a couple of topics that I can write about. I apologize in advance if they seem kind of random. I am actually sitting in the waiting room right now at MD Anderson waiting for my visit with the doc so that he can clear me for my next round of chemo. Anna and I drove down early yesterday morning so that I could get in another round of acupuncture and experiment in some of the other alternative treatments that they offer. That is a whole other topic for a separate blog that I will write soon.
Anyway, after my class got out at 3pm Anna and I headed to do some shopping for Katelyn's upcoming birthday since I am not going to feel much like shopping after the chemo. Then we went to dinner with my dad, my little brother and my nephew at Outback Steakhouse. To cap off the evening, Anna and I went to see the movie Date Night with popcorn and a Coke. I don't think I have mentioned this yet, but since the discovery of my noma, I have drastically altered my diet. A lot of fruits and vegetables are in and a lot of the sugars and highly processed foods are out. However, every once in a while I do let myself enjoy an occasional Coke or bowl of Cap'n Crunch. And I do enjoy my sweets! It was a good day. Nothing like spending the day with your best friend doing things you enjoy.
Anna has said repeatedly that she likes the "happy Josh" much more than the Josh that emerges after a round of chemo. And she can tell when I am either in pain or not feeling well because of the way I act. Well, after yesterday being such a good day she noticed a change in my disposition this morning. Part of that was probably because I discovered that one of the medications that I have to start taking the day before chemo was causing a mild instance of the worst side effects that I felt after having the first round of chemo. Also, driving down to MD Anderson I started thinking about the fact that I am about to have a bunch of poison pumped into my bloodstream voluntarily and it is going to make me feel like crap for the next 4-6 days. Now I know it is for a good reason, but it is easy to see why something like that might affect one's mood. Another tangible piece of evidence about my state of health from one day to the next. My blood pressure came in at 115/59 the day before chemo - the lowest I have ever seen it been. Ever. Today, the day of chemo, sitting in the doc's office, it came in at 147/70. Lots on my mind today.
Back to the point about the medicine I took yesterday causing some distasteful side effects. After the first round of chemo I basically had 6-7 days of nastiness. "Chemo-head", stomach problems, nausea, dizziness, etc. If one were to have asked me on one of those days if I wanted to continue with the chemo I would have honestly said no. And that "no" answer for me means death. Then on the seventh day (sounds biblical) it all seem to clear up. The clouds parted and the sun came out. I took joy in seeing the effects of spring on my yard, movies were funnier, and food tasted better. Much better. Ask me the same question about the chemo and my response would have been "bring it on!" It is amazing how quickly the human mind can forget the negative memories. I had a great two weeks before this round of chemo and in that time I completely forgot about how ill I felt. This is probably a similar situation to a mother giving birth. During labor she might swear off any more children for the rest of her natural life. However, for some, just a short time later after holding that wonderful creation, they would gladly go through the whole process again in a heartbeat.
I think I am going to stop here because I have been finishing up the second half of the blog with the chemo IV in my arm. Earlier the nurse actually interrupted me by getting me back to the exam room for my appointment on time. The doc was late, but the appointment started on time. Oh well, can't get everything I want.
I have come across a couple of topics that I can write about. I apologize in advance if they seem kind of random. I am actually sitting in the waiting room right now at MD Anderson waiting for my visit with the doc so that he can clear me for my next round of chemo. Anna and I drove down early yesterday morning so that I could get in another round of acupuncture and experiment in some of the other alternative treatments that they offer. That is a whole other topic for a separate blog that I will write soon.
Anyway, after my class got out at 3pm Anna and I headed to do some shopping for Katelyn's upcoming birthday since I am not going to feel much like shopping after the chemo. Then we went to dinner with my dad, my little brother and my nephew at Outback Steakhouse. To cap off the evening, Anna and I went to see the movie Date Night with popcorn and a Coke. I don't think I have mentioned this yet, but since the discovery of my noma, I have drastically altered my diet. A lot of fruits and vegetables are in and a lot of the sugars and highly processed foods are out. However, every once in a while I do let myself enjoy an occasional Coke or bowl of Cap'n Crunch. And I do enjoy my sweets! It was a good day. Nothing like spending the day with your best friend doing things you enjoy.
Anna has said repeatedly that she likes the "happy Josh" much more than the Josh that emerges after a round of chemo. And she can tell when I am either in pain or not feeling well because of the way I act. Well, after yesterday being such a good day she noticed a change in my disposition this morning. Part of that was probably because I discovered that one of the medications that I have to start taking the day before chemo was causing a mild instance of the worst side effects that I felt after having the first round of chemo. Also, driving down to MD Anderson I started thinking about the fact that I am about to have a bunch of poison pumped into my bloodstream voluntarily and it is going to make me feel like crap for the next 4-6 days. Now I know it is for a good reason, but it is easy to see why something like that might affect one's mood. Another tangible piece of evidence about my state of health from one day to the next. My blood pressure came in at 115/59 the day before chemo - the lowest I have ever seen it been. Ever. Today, the day of chemo, sitting in the doc's office, it came in at 147/70. Lots on my mind today.
Back to the point about the medicine I took yesterday causing some distasteful side effects. After the first round of chemo I basically had 6-7 days of nastiness. "Chemo-head", stomach problems, nausea, dizziness, etc. If one were to have asked me on one of those days if I wanted to continue with the chemo I would have honestly said no. And that "no" answer for me means death. Then on the seventh day (sounds biblical) it all seem to clear up. The clouds parted and the sun came out. I took joy in seeing the effects of spring on my yard, movies were funnier, and food tasted better. Much better. Ask me the same question about the chemo and my response would have been "bring it on!" It is amazing how quickly the human mind can forget the negative memories. I had a great two weeks before this round of chemo and in that time I completely forgot about how ill I felt. This is probably a similar situation to a mother giving birth. During labor she might swear off any more children for the rest of her natural life. However, for some, just a short time later after holding that wonderful creation, they would gladly go through the whole process again in a heartbeat.
I think I am going to stop here because I have been finishing up the second half of the blog with the chemo IV in my arm. Earlier the nurse actually interrupted me by getting me back to the exam room for my appointment on time. The doc was late, but the appointment started on time. Oh well, can't get everything I want.
Monday, April 19, 2010
It takes a team
Teamwork is essential in Josh's fight against his noma.
1. Doctors, nurses, coordinators
Both Western and Eastern doctors, support staff, coordinators, etc., are contributing to Josh's fight. We believe that a mixture of therapies will contribute to the best outcome. We have to be treating the body and the mind. We need to be using both acupuncture and drugs. We need to ensure Josh talks about his feelings and keeps exercising for both mental and physical benefits. Thanks to all those we're paying to share their expertise with us.
2. Friends
You guys continue to provide incredible support with prayers, comments on the blog, phone calls, visits, distractions like movies and events, invitations to lunch or dinner, willingness to provide food and help when Josh is at his lowest points, hugs, cards, and willing ears to listen to our experiences.
3. Family
Clearly we've had incredible support from both sides of the family with anything from a year-long Netflix subscription to time spent here with the kids while Josh and I need to be down at MD Anderson.
This weekend we took another trip down to Houston, but this time, completely for a social visit - nothing directly to do with Josh's noma. But thoughts of the noma are obviously never far away. The main agenda for the visit was to celebrate anyone's birthday within the last month or so. Isaac (Josh's younger brother) created a delicious (and quite elaborate - he started the cooking on Saturday morning) Mediterranean meal, food that apparently has great health benefits. Josh really doesn't like to cook, but with all the cautiousness of what he's feeding his body to not help the cancer grow (or help kill it), he's close to being as much of a food snob and cook as Isaac is. And that's saying something.
Then after the present opening for each birthday celebrant, Josh's mom presented two more gifts - the same thing to both Josh and Isaac: Lord of the Rings trilogy in Blue Ray + a small sword letter opener. They're both big Tolkien fans and the swords are meant to symbolize the fight they're both on the front line of. Isaac has been a true blessing to Josh...and incidentally, he was born exactly 9 months after Josh's 4th birthday.
Makes me think of a possible Mastercard commercial submission...
Medical care to treat a noma: $100s of thousands of dollars
Travel back and forth to Houston for treatments: $100s/month and hours of lost sleep
A passionate doctor-in-training brother who spends inordinate amounts of time researching and care-giving: priceless
Thanks team, and keep fighting!
1. Doctors, nurses, coordinators
Both Western and Eastern doctors, support staff, coordinators, etc., are contributing to Josh's fight. We believe that a mixture of therapies will contribute to the best outcome. We have to be treating the body and the mind. We need to be using both acupuncture and drugs. We need to ensure Josh talks about his feelings and keeps exercising for both mental and physical benefits. Thanks to all those we're paying to share their expertise with us.
2. Friends
You guys continue to provide incredible support with prayers, comments on the blog, phone calls, visits, distractions like movies and events, invitations to lunch or dinner, willingness to provide food and help when Josh is at his lowest points, hugs, cards, and willing ears to listen to our experiences.
3. Family
Clearly we've had incredible support from both sides of the family with anything from a year-long Netflix subscription to time spent here with the kids while Josh and I need to be down at MD Anderson.
This weekend we took another trip down to Houston, but this time, completely for a social visit - nothing directly to do with Josh's noma. But thoughts of the noma are obviously never far away. The main agenda for the visit was to celebrate anyone's birthday within the last month or so. Isaac (Josh's younger brother) created a delicious (and quite elaborate - he started the cooking on Saturday morning) Mediterranean meal, food that apparently has great health benefits. Josh really doesn't like to cook, but with all the cautiousness of what he's feeding his body to not help the cancer grow (or help kill it), he's close to being as much of a food snob and cook as Isaac is. And that's saying something.
Then after the present opening for each birthday celebrant, Josh's mom presented two more gifts - the same thing to both Josh and Isaac: Lord of the Rings trilogy in Blue Ray + a small sword letter opener. They're both big Tolkien fans and the swords are meant to symbolize the fight they're both on the front line of. Isaac has been a true blessing to Josh...and incidentally, he was born exactly 9 months after Josh's 4th birthday.
Makes me think of a possible Mastercard commercial submission...
Medical care to treat a noma: $100s of thousands of dollars
Travel back and forth to Houston for treatments: $100s/month and hours of lost sleep
A passionate doctor-in-training brother who spends inordinate amounts of time researching and care-giving: priceless
Thanks team, and keep fighting!
Thursday, April 15, 2010
Planning
I like to plan, meaning that I like to think about what else I can be doing soon that I'm not yet getting to do. But I'm a bit scattered in the planning. Just ask Josh. He and I recently put on our family calendar an appointment to meet at 8:00pm on Tuesday night for one hour. We even had an agenda. Yes, an agenda.
When we sat down (only 10 minutes late since we had to ensure the kids were getting ready for bed as we had asked them to), we found that we had already talked about two of the agenda items via our conversations throughout the day. Check, check.
Then came the topic of Galveston.
We have a tradition dating back to when Katelyn was 6 weeks old (1998) - an annual trip to Galveston to spend two days on the beach. Not the greatest beach, but a beach nonetheless - one that's easy to access and, given our lack of pickiness about quality of water and sand, fun to swim in. And it's become a tradition for Josh's Houston-based family to join us, to eat at The Spot once for lunch, eat at Fish Tales once for dinner (ever since the Ocean Grill was razed by the hurricane), and stay in one of the nearby condominiums with a pool (we recommend the Dawn Condominiums, by the way).
2002:
2009:
2001:
2009:
Through some coordination of schedules, we will be able to convene again in Galveston this year, along with my recently-retired parents and their 90-pound dog, Bwenzi. Happily, we have a wee bit more planning needed for Beach Vacation 2010.
While we continue talking (each sitting on one side of our nice desk system that Josh built, each in front of a computer), I am in the trip-planning zone now. But, much to Josh's understandable irritation, I'm no longer thinking about the Galveston trip. I am instead on to exploring flight deals from American Airlines. Maybe a trip to New York...or Boston...anywhere that has a good deal! Did I mention that I'm a bit scattered when it comes to planning?
With Josh's chemotherapy schedule, we're planned out at least through May 12th when he'll get a round of scans to see how his noma has reacted to the chemicals they've pumped through his system (both on March 31st and upcoming on April 21st). If the tumors have shrunk or are the same, then we'll continue on with the same cocktail. If they've continued to grow, we'll try something different.
Can I plan on the most favorable outcome? Probably not. But I will hope. And I can plan to be supportive, patient, loving and strong.
I'm certainly planning Josh and my 17th wedding anniversary trip already. December 28th will be here faster than you think...
When we sat down (only 10 minutes late since we had to ensure the kids were getting ready for bed as we had asked them to), we found that we had already talked about two of the agenda items via our conversations throughout the day. Check, check.
Then came the topic of Galveston.
We have a tradition dating back to when Katelyn was 6 weeks old (1998) - an annual trip to Galveston to spend two days on the beach. Not the greatest beach, but a beach nonetheless - one that's easy to access and, given our lack of pickiness about quality of water and sand, fun to swim in. And it's become a tradition for Josh's Houston-based family to join us, to eat at The Spot once for lunch, eat at Fish Tales once for dinner (ever since the Ocean Grill was razed by the hurricane), and stay in one of the nearby condominiums with a pool (we recommend the Dawn Condominiums, by the way).
2002:
2009:
2001:
2009:
Through some coordination of schedules, we will be able to convene again in Galveston this year, along with my recently-retired parents and their 90-pound dog, Bwenzi. Happily, we have a wee bit more planning needed for Beach Vacation 2010.
While we continue talking (each sitting on one side of our nice desk system that Josh built, each in front of a computer), I am in the trip-planning zone now. But, much to Josh's understandable irritation, I'm no longer thinking about the Galveston trip. I am instead on to exploring flight deals from American Airlines. Maybe a trip to New York...or Boston...anywhere that has a good deal! Did I mention that I'm a bit scattered when it comes to planning?
With Josh's chemotherapy schedule, we're planned out at least through May 12th when he'll get a round of scans to see how his noma has reacted to the chemicals they've pumped through his system (both on March 31st and upcoming on April 21st). If the tumors have shrunk or are the same, then we'll continue on with the same cocktail. If they've continued to grow, we'll try something different.
Can I plan on the most favorable outcome? Probably not. But I will hope. And I can plan to be supportive, patient, loving and strong.
I'm certainly planning Josh and my 17th wedding anniversary trip already. December 28th will be here faster than you think...
Monday, April 12, 2010
Feeling good
Josh is feeling good. And that makes me and the rest of the family feel good. Nice to have him very positive and chipper and raring to go. But we sometimes realize that it's not all like it was before. He can't do all that he used to do...yet.
This past weekend, with Ethan and Kate home sick (again! twice in two weeks), Josh, Julia and I went out to help with the city of Murphy's Trash Off in which groups spend time picking up trash in the community. We picked a strip of land surrounding the railroad and set off with 3 large garbage sacks each, bright orange safety vests, and pick-up-sticks (PVC pipe with a screw in the bottom).
We started out spanning the area on one side of the railroad tracks in three parallel lines. We quickly found the pick-up-sticks difficult to use because you had to take the extra step to get the trash off the end of the stick (versus a grabber that you could just drop the contents into the trash bag). So, ditching those, we proceeded with lots of bending over and stooping. Within about 30 minutes, my back started to hurt, and as a relatively healthy and in-shape person, I was getting quite tired.
And clearly, Josh found that he had reached his limit, too. He was feeling dizzy and his legs (particularly his hamstrings) were quite weak. He sat for a while and watched and then went to the van to rest and wait for us to finish.
As good as Josh is feeling, he's still limited in what he can do physically. Oftentimes it's easy to forget this with how good he looks and acts.
Side note 1: Part way through our clean up, Julia found a treasure. Wrapped in a deteriorated sweater, she found a wallet full of credit cards, gift cards, $4 in cash, etc., along with an XM radio unit and some other electronic device. We took these to the police station and the reporting officer said that he had taken the call about the stolen wallet nearly a year ago. As we drove home, we watched him drive right to the woman's house (in Murphy) to deliver the find. We drove by on the way back home and waved. Nice good deed done, Julia!
Side note 2: Ethan's sickness has turned out to be strep throat - so bad that he can't bend his neck more than a couple of inches in any direction because of swollen lymph nodes. Fun, fun. But nothing that some antibiotics shouldn't be able to knock out.
This past weekend, with Ethan and Kate home sick (again! twice in two weeks), Josh, Julia and I went out to help with the city of Murphy's Trash Off in which groups spend time picking up trash in the community. We picked a strip of land surrounding the railroad and set off with 3 large garbage sacks each, bright orange safety vests, and pick-up-sticks (PVC pipe with a screw in the bottom).
We started out spanning the area on one side of the railroad tracks in three parallel lines. We quickly found the pick-up-sticks difficult to use because you had to take the extra step to get the trash off the end of the stick (versus a grabber that you could just drop the contents into the trash bag). So, ditching those, we proceeded with lots of bending over and stooping. Within about 30 minutes, my back started to hurt, and as a relatively healthy and in-shape person, I was getting quite tired.
And clearly, Josh found that he had reached his limit, too. He was feeling dizzy and his legs (particularly his hamstrings) were quite weak. He sat for a while and watched and then went to the van to rest and wait for us to finish.
As good as Josh is feeling, he's still limited in what he can do physically. Oftentimes it's easy to forget this with how good he looks and acts.
Side note 1: Part way through our clean up, Julia found a treasure. Wrapped in a deteriorated sweater, she found a wallet full of credit cards, gift cards, $4 in cash, etc., along with an XM radio unit and some other electronic device. We took these to the police station and the reporting officer said that he had taken the call about the stolen wallet nearly a year ago. As we drove home, we watched him drive right to the woman's house (in Murphy) to deliver the find. We drove by on the way back home and waved. Nice good deed done, Julia!
Side note 2: Ethan's sickness has turned out to be strep throat - so bad that he can't bend his neck more than a couple of inches in any direction because of swollen lymph nodes. Fun, fun. But nothing that some antibiotics shouldn't be able to knock out.
Saturday, April 10, 2010
Hope
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.
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.
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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