Daniel was a small baby. He finally reached the ten pound mark at one year of age, and that first year I put most of my energy into getting him there. I pumped milk, added powders to make it heftier calorie-wise, and supplemented with formula--the kind that was easily digestible (which, if you're familiar with special formulas, you'll know was not pleasing to the nostrils).
Turns out, Daniel was just programmed to be on the tiny side. At almost thirteen years of age he's only quadrupled that 12 month weight. He's 42 pounds and a few ounces. He still drinks most of his meals. He will eat well for the school staff, but not for mom. I don't sweat it. Every now and then I offer him food, and sometimes he takes it. Most of the time he smiles and raspberries it back at me.
The early days of trying to plump Daniel up came back to me as Rich started treatment for cancer two weeks ago. He had all of his teeth pulled, so he can't chew. Radiation is going to cause weight loss, and he'll need to consume about 2100 calories a day just to maintain his current weight. He may have to resort to a feeding tube before it's all over, but knowing my strong man, there's a good chance we'll avoid that step.
Back to my deja vu. I'm measuring and counting and coaxing Rich to drink the shakes and eat the chicken noodle soup I make for him. I'm using supplemental whey protein in the shakes to prevent muscle wasting. It's going well so far, but realistically, we're only into week one. We've got six more to go.
I'm starting to hum 'Circle of Life' in curiosity at how my life does just that. It circles. That isn't necessarily a bad thing. I know that we'll manage this, just like Daniel and I did twelve years ago when we were hitting the scales every other day at the peds office, in between therapies and other specialist visits.
I guess that's one of the silver linings of living with disability. You develop a tenaciousness that serves you pretty well when things go south. Then again, maybe I just haven't hit the wall yet. I'll let you know.
Saturday, July 30, 2011
Saturday, July 23, 2011
It's Staged
My husband Rich's throat cancer is a 4a, which means it is in lymph nodes on both sides. We went to the follow-up after his biopsy and scans, and the entire team of specialists seeing a clinic full of newly diagnosed patients gave us the news.
They were optimistic from the get-go. 90% cure rate with proton radiation and chemo. If that doesn't work, surgery on whatever nodes are still affected. We are home to one of only nine proton radiation centers in the country here in Jacksonville. We're lucky in that regard.
One important thing to know if you have to have radiation to an area close to your jaw, is that your teeth better be in perfect condition or they have to go. We already knew that Rich needed $14 grand worth of dental work, so in order to expedite things, they were all pulled. At once. They have to do that because if dental work is ever necessary at any time in the future post-radiation, hyperbaric oxygen has to be used, and it's very tricky for the area to heal. Just one of the inevitable after-effects of the cure.
It's gonna be a rough ride. There's no sugar coating that fact. I'm just grateful for our caregiver, Rita. She came into our lives at exactly the right time last September. We were finally added to the med-waiver a year ago (after a complicated process of qualifying under the crisis label). Before that, I was on my own for eleven years. Now that Rita's on the scene, I am comfortable with Daniel being cared for by someone else, and that is huge with all that's going on.
With family 900 miles away, Rich's dad dying of lung cancer and his mom unable to drive, we don't have a lot of blood-line support. Certain friends (you know who you are) have stepped up and called Rich offering rides and emotional support. When I go back to work in August we will need those extra hands. Rides are pretty much covered through the American Cancer Society, so the help we need will be more local and involve things like errands and such.
Starting next week it's twice a day radiation and once a week chemo for seven weeks. Less than a season, I keep telling him. We will get through it.
I did take an hour out with my daughter to float in the ocean a couple of days ago. We dodged waves, soaked up the sun, and felt the ocean breeze cool us in this insane heat we're having. That one hour renewed me. We also ate sushi next door to the pharmacy while waiting for Rich's meds to be filled. People keep reminding me to take care of myself, and I think I did a pretty good job that day.
Rich is an amazing singer and guitarist. He has a beautiful voice, and has sang and played in bands since he was 14. I really want to give him something extra to help him through this, so I've been trying to contact his favorite singer, Tommy Shaw. He has a sound similar to Tommy's, who sang for Styx for awhile. I'd love it if we could get an autographed photo with a note or something. Just putting that out there, Universe!
The stage is set, now we just have to play this thing out to the end. I remind Rich everyday that by Christmas we'll be standing in front of the tree getting a picture snapped with his new pearly whites in place, and all of this behind us. That's the plan!
They were optimistic from the get-go. 90% cure rate with proton radiation and chemo. If that doesn't work, surgery on whatever nodes are still affected. We are home to one of only nine proton radiation centers in the country here in Jacksonville. We're lucky in that regard.
One important thing to know if you have to have radiation to an area close to your jaw, is that your teeth better be in perfect condition or they have to go. We already knew that Rich needed $14 grand worth of dental work, so in order to expedite things, they were all pulled. At once. They have to do that because if dental work is ever necessary at any time in the future post-radiation, hyperbaric oxygen has to be used, and it's very tricky for the area to heal. Just one of the inevitable after-effects of the cure.
It's gonna be a rough ride. There's no sugar coating that fact. I'm just grateful for our caregiver, Rita. She came into our lives at exactly the right time last September. We were finally added to the med-waiver a year ago (after a complicated process of qualifying under the crisis label). Before that, I was on my own for eleven years. Now that Rita's on the scene, I am comfortable with Daniel being cared for by someone else, and that is huge with all that's going on.
With family 900 miles away, Rich's dad dying of lung cancer and his mom unable to drive, we don't have a lot of blood-line support. Certain friends (you know who you are) have stepped up and called Rich offering rides and emotional support. When I go back to work in August we will need those extra hands. Rides are pretty much covered through the American Cancer Society, so the help we need will be more local and involve things like errands and such.
Starting next week it's twice a day radiation and once a week chemo for seven weeks. Less than a season, I keep telling him. We will get through it.
I did take an hour out with my daughter to float in the ocean a couple of days ago. We dodged waves, soaked up the sun, and felt the ocean breeze cool us in this insane heat we're having. That one hour renewed me. We also ate sushi next door to the pharmacy while waiting for Rich's meds to be filled. People keep reminding me to take care of myself, and I think I did a pretty good job that day.
Rich is an amazing singer and guitarist. He has a beautiful voice, and has sang and played in bands since he was 14. I really want to give him something extra to help him through this, so I've been trying to contact his favorite singer, Tommy Shaw. He has a sound similar to Tommy's, who sang for Styx for awhile. I'd love it if we could get an autographed photo with a note or something. Just putting that out there, Universe!
The stage is set, now we just have to play this thing out to the end. I remind Rich everyday that by Christmas we'll be standing in front of the tree getting a picture snapped with his new pearly whites in place, and all of this behind us. That's the plan!
Saturday, July 9, 2011
It can all change on a dime
Daniel and I made it through the first week of summer school. Both of us were jittery, and it took time to adjust to getting up so early again. I was my usual neurotic bundle of nerves the first two days while I learned a whole new routine with different students, lots of tube feedings, meds, and all new people. Everyone who has worked there before told me he and I would both love it, but of course I had my doubts. They were right (my friends, that is, not my inner doubts).
Just as the week wound down to a close, though, everything changed. Our world was rocked big-time. My sweet man who I just celebrated one year of marriage to was diagnosed with throat cancer. We don't know the full extent yet; the results will be in on Monday. To say I'm shocked, numb, scared, freaked...those words just, well, they don't seem to pack the right punch for what's going on in me right now.
Everyone who knows me knows that I've always been open to alternatives but I don't balk at traditional treatments. So, the best thing I can find for my hands to do right now (besides ordering the smokeless cigarettes for him that are on their way now), is research and use the tools I have to help boost his immune system. I also ask that everyone remember him in their prayers, drum circles, meditations, whatever positive energy path you employ!
This is one hurdle we've not had to jump before. We're gonna need more than a few friends to help boost us over.
Just as the week wound down to a close, though, everything changed. Our world was rocked big-time. My sweet man who I just celebrated one year of marriage to was diagnosed with throat cancer. We don't know the full extent yet; the results will be in on Monday. To say I'm shocked, numb, scared, freaked...those words just, well, they don't seem to pack the right punch for what's going on in me right now.
Everyone who knows me knows that I've always been open to alternatives but I don't balk at traditional treatments. So, the best thing I can find for my hands to do right now (besides ordering the smokeless cigarettes for him that are on their way now), is research and use the tools I have to help boost his immune system. I also ask that everyone remember him in their prayers, drum circles, meditations, whatever positive energy path you employ!
This is one hurdle we've not had to jump before. We're gonna need more than a few friends to help boost us over.
Sunday, July 3, 2011
Freedom
If
by Rudyard Kipling
If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";
If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man
by Rudyard Kipling
If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";
If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man
Friday, July 1, 2011
Sweet Summer Days
It has been such a peaceful week. Melody is on her pilgrimage with the youth group to PA and NY, and it's my last week off before going back to work for the summer school session. We haven't done much in the way of exciting stuff, but everyday has been good.
It might be due to the Zantac, or the alignment of the moon and stars, but Daniel has been calm and happy all week long. We've had a lot of doctor's appointments and errands to check off the list. He's smiled through all of them.
Tonight Rich and I had crab legs at a favorite restaurant on the beach while Daniel hung out with his caregiver for a few hours. He loves that woman. He hadn't seen her all week because we were out of respite for the fiscal year, and when she got here his face lit up.
Good news came our way today, too. We've been approved (after two denials) for personal care attendant hours for Daniel. It took some fighting, mostly on our caregiver's part, but we beat the system for once. Someone at Medicaid told her that she and I should be poster people for getting an approval with the new agency in charge, because so far all they've seen are denials for PC.
Life is good.
It might be due to the Zantac, or the alignment of the moon and stars, but Daniel has been calm and happy all week long. We've had a lot of doctor's appointments and errands to check off the list. He's smiled through all of them.
Tonight Rich and I had crab legs at a favorite restaurant on the beach while Daniel hung out with his caregiver for a few hours. He loves that woman. He hadn't seen her all week because we were out of respite for the fiscal year, and when she got here his face lit up.
Good news came our way today, too. We've been approved (after two denials) for personal care attendant hours for Daniel. It took some fighting, mostly on our caregiver's part, but we beat the system for once. Someone at Medicaid told her that she and I should be poster people for getting an approval with the new agency in charge, because so far all they've seen are denials for PC.
Life is good.
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