This afternoon is our church's birthday party. In honor of blowing out the candles and making a wish I share the following wish/prayer.
In our church when we share the joys and concerns for prayer each person has a chance to share what is on their heart by writing their joy or concern down on a slip of paper that the ushers hand to me, the pastor. In turn I sort and read them on the spot as a prelude to our shared prayer time together.
Last week one of the pieces of paper was handed in by one of the upper elementary set who wrote: "I hope that someday cancer is as easy to have and get well from as a cold."
Amen little sister, amen.
As cancers go, TC is one of the easiest to cure, for which I am very grateful. However, that doesn't always mean that it is an easy journey to get to the place of health.
Frank has needed to be more diligent this past week of staying on top of the nausea. That means taking meds frequently, the ones that warn you not to operate heavy machinery. He's never been one to insist on driving, in fact given the choice he'd prefer I drove. (I on the other hand would prefer he were driving, so it is a wonder that we ever get anywhere!) He's not even getting on to me for "hovering" when I ask if it is time to take more meds. (For the record, I am not hovering, I have found an aerial holding pattern that we both can be comfortable with.) Our goal is to be able to say he made it through chemo without throwing up. So far so good. I say this while knowing that sometimes even when you have a cold, you do have to feel worse before you can feel better.
Emily Sailers of the Indigo Girls wrote the following song a few years back. It's called The Wood Song. (It can be found on the Swamp Ophelia CD from May of 1994--I was at the Tower Records release party in Atlanta, my friend Sharon B designed the set that the cover picture was taken in...but that is another story for another time...good times, good times.) Here are the lyrics:
The Wood Song
The thin horizon of a plan is almost clear
My friends and I have had a tough time
Bruising our brains hard up against change
All the old dogs and the magician
Now I see we’re in the boat in two by twos
Only the heart that we have for a tool we could use
And the very close quarters are hard to get used to
Love weighs the hull down with it’s weight
But the wood is tired and the wood is old
And we’'ll make it fine if the weather holds
But if the weather holds we’'ll have missed the point
That’'s where I need to go
No way construction of this tricky plan
Was built by other than a greater hand
With a love that passes all out understanding
Watching closely over the journey
Yeah but what it takes to cross the great divide
Seems more than all the courage I can muster up inside
Although we get to have some answers when we reach the other side
The prize is always worth the rocky ride
But the wood is tired and the wood is old
And we’'ll make it fine if the weather holds
But if the weather holds we’'ll have missed the point
That’'s where I need to go
Sometimes I ask to sneak a closer look
Skip to the final chapter of the book
And then maybe steer us clear from some of the pain it took
To get us where we are this far yeah
But the question drowns in it’s futility
And even I have got to laugh at me
No one gets to miss the storm of what will be
Just holding on for the ride
The wood is tired and the wood is old
We’'ll make it fine if the weather holds
But if the weather holds we’'ll have missed the point
That'’s where I need to go
"No one gets to miss the storm of what will be." Sometimes I feel like all I can do is to hold on for the ride. Other times I get to have the illusion that I am actually steering the boat! But for the most part I am always drawn back to that place of the heart that reminds me that I don't want to have missed the point of all this. The prize of growing old with Frank will be worth this rocky ride. About this I have NO DOUBTS. And all told, given the life and death consequences that are on the line, this ride could be a lot rockier. I'm not asking for more, just saying that up to now we've managed; due to the help of so many great, wonderful people.
I'm glad that I get to be where I am, despite the tiredness and stress. Sometimes it does take courage to cross that "great divide" of what we think we can and cannot do. Six weeks ago when asked if I could give the Neulasta shot to Frank my voice said yes while my mind raced as to how I could get out of it and/or find the courage to do it. Ask me today after having watched others poke and prod him, I honestly still don't want to do it. BUT I could, without having to muster much courage at all. I am however very greatful for the nurses in the church who are doing it for him. The wood may be old and tired, but it is not going to break. This is where I want to be.
Tomorrow is a "marker" day for us. It seems funny to say that we've found a "rhythm" within this time of chemo, but we have and tomorrow is a break in that rhythm. It is the first CT scan of many that he will have over the next several years as he is monitored for any additional signs of cancer. (Can you tell I have a long range view of this? And yet it can only happen one day at a time....) Tomorrow's scan will tell us how much shrinkage has occurred in the tumor between Frank's kidney and aorta. We both harbor fears that for some strange reason the tumor will still be huge or there will be more of them. Although all other signs point to it's shrinkage, pain level, tumor markers, hair falling out--ok that last one is not a sign of it's shrinkage, only that he really is getting more than saline when he's hooked up to a drip for hours on end.
This is also the week we travel to IU to see if the urologist there concurs with Dr. D "I can open you up and take snot out, but it would just be snot, and why open you up if we don't have to?" Frank by the way appreciates not having to be opened up if it is not necessary. I will get to do the driving. (yippee) We'll break the trip up both ways by stopping at my parent's home in St. Louis. AND we'll try to rest and relax before heading home because the next week will be the beginning of round three...
To sum up what chemo is like:
The first round is to get the cancer's attention: "Hey you, we're gonna get you!"
The second round is to say, "Yeah you, we mean business, we are after your ass."
The third round is to kill. "Cancer, you've been given notice: now die bastard die."
The fourth found is to kick it and make sure it really is dead. "Stick a fork in 'em, it's done!"
Here's to taken care of business (the end of round two) and to preparing to kill the bastard.
Peace,
Sarah
Sunday, February 27, 2005
Thursday, February 24, 2005
So you know...
Just so you know: We will be getting out of town Friday and Saturday. A short trip down south to visit my aunt and for Frank to wear his CPA hat for a few hours.
(Translation: there may not be any posts until middle of next week. Remember: "No news is good news." )
We'll be back for church on Sunday morning and geared up for the HUGE BIRTHDAY PARTY at church Sunday night.
It is the coolest concept: instead of fretting over missing someone's birthday throughout the year we come together one day a year and celebrate everyone at the same time. We sit with others who are born in our birth month and share a pot luck meal. Someone from that month decorates the table another brings a cake and yet another volunteers to be part of the evening's grand finale: a talent show. It is always a ton of fun.
Frank seems to think that this is the year that I will be able to keep a steady beat and is trying to talk me into helping him with his talent offering. We'll see. Hey, he's got cancer, he's used to living on the edge, right? Plan on seeing pictures.
Next week is not a "big chemo" week but it is busy.
Thank you for your continued prayers and good thoughts. It makes a difference. We are so incredibly blessed.
Peace, the Rev.
(Translation: there may not be any posts until middle of next week. Remember: "No news is good news." )
We'll be back for church on Sunday morning and geared up for the HUGE BIRTHDAY PARTY at church Sunday night.
It is the coolest concept: instead of fretting over missing someone's birthday throughout the year we come together one day a year and celebrate everyone at the same time. We sit with others who are born in our birth month and share a pot luck meal. Someone from that month decorates the table another brings a cake and yet another volunteers to be part of the evening's grand finale: a talent show. It is always a ton of fun.
Frank seems to think that this is the year that I will be able to keep a steady beat and is trying to talk me into helping him with his talent offering. We'll see. Hey, he's got cancer, he's used to living on the edge, right? Plan on seeing pictures.
Next week is not a "big chemo" week but it is busy.
- Monday is a CT scan to see how much shrinkage there has been. (Shrink, Shrink, Shrink!)
- Wednesday is a appointment with a dermatologist, Frank's got a mole on his back that I've been watching and pointed out to Dr. V who is sending him to the dermatologist (a Dr. De.) for a consult. It is probably nothing, but when you getting "free" medical care, what they hey, right? ("Free" as in met his deductible for the year already.)
- Thursday we'll head to Indianapolis for the consult w/ Dr. Foster at IU. The appointment is on Friday morning.
Thank you for your continued prayers and good thoughts. It makes a difference. We are so incredibly blessed.
Peace, the Rev.
Tuesday, February 22, 2005
HIPAA? What's HIPAA?
Had a follow-up with Dr. D (the urologist) today. I thought he would at least want to look at my incision and say "Damn! I do good work!" But he just wanted to make sure he was up to speed on things. He had an intern with him (nice guy) and I handed out a couple of Blueboys to them. I told him about my upcoming visit to IU and he was all in favor of getting a second opinion, an then even a third opinion if it was necessary to break a tie. He'll see me again in six months.
Tuesday, R2D9, Frank and Dr. D, both sporting their blue boys pin. Yes, Tim the Enchanter hat was worn all day...see Frank's post regarding Hippa and how even with the silly hat they didn't require id to pick up his films!
Just as a recap, Dr. V. (oncologist) wants lymph node surgery to happen after chemo, period. Dr. D. (urologist) says it depends on what things look like on the followup CTs - if things have shrunk down significantly, there may be nothing worth removing at that point and I can go on a surveillance schedule (if things start to grow again, then we cut). The consultation at IU is with a urologist, but he'll be talking with their oncology folks as well. Suffice it to say there should be plenty of opinions to go around after we get back from Indianapolis. I think I'm leaning toward Dr. D's position at this point - why operate unless really necessary? (As he so eloquently put it, "Sure, I can go in and take out some snot, but right now, I'm thinking that's all it's going to be - snot.")
After the office visit, since we were in the neighborhood, we stopped by the hospital to get my films (CT and ultrasound) and pathology slides to take to IU. Not once was I asked for any form of ID. I just said who I was and what I wanted, and apparently that was good enough. (I did have to promise on my honor that I would hand deliver the films back to the hospital as soon as we get back from IU.) Convenient in some sense, a bit unnerving in another.
I decided to wear Tim the Enchanter all day just because I could. I got plenty of looks and comments, including one couple at the grocery store who were a bit horrified.
Tim again....
One of them was Russian and told Sarah that it was a sign that I was cuckolded (i.e., the victim of an unfaithful wife). It's a bit similar to the minor episode that erupted in the news after Dubya's "Hook 'em Horns" hand gesture to the Texas Longhorn marching band during the inauguration parade was widely misinterpreted around the world. Too funny.
Did a little work at the office, then came home to meet someone to shoot me up with the Neulasta. By the way, I have my own little used sharps container in the bathroom now. It doesn't really fit in with the rest of the decor, to speak the plain truth.
I think I may have overdone it today. We'll see tomorrow.
Tuesday, R2D9, Frank and Dr. D, both sporting their blue boys pin. Yes, Tim the Enchanter hat was worn all day...see Frank's post regarding Hippa and how even with the silly hat they didn't require id to pick up his films!
Just as a recap, Dr. V. (oncologist) wants lymph node surgery to happen after chemo, period. Dr. D. (urologist) says it depends on what things look like on the followup CTs - if things have shrunk down significantly, there may be nothing worth removing at that point and I can go on a surveillance schedule (if things start to grow again, then we cut). The consultation at IU is with a urologist, but he'll be talking with their oncology folks as well. Suffice it to say there should be plenty of opinions to go around after we get back from Indianapolis. I think I'm leaning toward Dr. D's position at this point - why operate unless really necessary? (As he so eloquently put it, "Sure, I can go in and take out some snot, but right now, I'm thinking that's all it's going to be - snot.")
After the office visit, since we were in the neighborhood, we stopped by the hospital to get my films (CT and ultrasound) and pathology slides to take to IU. Not once was I asked for any form of ID. I just said who I was and what I wanted, and apparently that was good enough. (I did have to promise on my honor that I would hand deliver the films back to the hospital as soon as we get back from IU.) Convenient in some sense, a bit unnerving in another.
I decided to wear Tim the Enchanter all day just because I could. I got plenty of looks and comments, including one couple at the grocery store who were a bit horrified.
Tim again....
One of them was Russian and told Sarah that it was a sign that I was cuckolded (i.e., the victim of an unfaithful wife). It's a bit similar to the minor episode that erupted in the news after Dubya's "Hook 'em Horns" hand gesture to the Texas Longhorn marching band during the inauguration parade was widely misinterpreted around the world. Too funny.
Did a little work at the office, then came home to meet someone to shoot me up with the Neulasta. By the way, I have my own little used sharps container in the bathroom now. It doesn't really fit in with the rest of the decor, to speak the plain truth.
I think I may have overdone it today. We'll see tomorrow.
Monday, February 21, 2005
A bit of a bummer
Cycle 2 week 2 is underway.
Monday Feb. 21, round 2 day 8, Presidents Day and Uncle Sam hat. In this close up you can kinda see what I this is bleo stains around his mouth. He was feeling much better this day that on the previous Friday. And it was before we got the following news.
Blood work looks good, except for my white counts which are running a bit low, as expected. The Neulasta shot comes via Fedex tomorrow, so that should take care of that. Saw Dr. V. for a brief visit and he told me that he's decided to hit me with four rounds of chemo instead of three. Joy. It's mostly because my AFP levels were so atrociously high early on, even though they've fallen off nicely since then.
He also mentioned (sort of tongue-in-cheek) that since I have a consultation with the TC gurus at Indiana U. next week he didn't want them to think my local care team were a bunch of brainless idiots (I secretly wondered if the extra round of chemo wasn't payback for me brownbagging my Neulasta shots).
All this is to say that Easter Sunday will not mark the end of chemotherapy - it will continue for an additional three weeks (until mid April - right around tax time, another appropriate calendar marker).
Other than that, we managed to avoid any Bleomycin side effects this time by keeping me pumped up with Tylenol and Benadryl, plus plenty of fluids. I think I may getting into a rhythm here (a frightening thought)...
At home the afternoon of R2D8, sans hat.
Yes, we are dancing. Before dinner Monday night (R2D8) we are jamming to our new favorite CD the Duhks.
And honestly, many of you will have a hard time beliveing it, but we dug them before we saw this.
The song we are dancing to is: "Death Came a Knockin'"
Monday Feb. 21, round 2 day 8, Presidents Day and Uncle Sam hat. In this close up you can kinda see what I this is bleo stains around his mouth. He was feeling much better this day that on the previous Friday. And it was before we got the following news.
Blood work looks good, except for my white counts which are running a bit low, as expected. The Neulasta shot comes via Fedex tomorrow, so that should take care of that. Saw Dr. V. for a brief visit and he told me that he's decided to hit me with four rounds of chemo instead of three. Joy. It's mostly because my AFP levels were so atrociously high early on, even though they've fallen off nicely since then.
He also mentioned (sort of tongue-in-cheek) that since I have a consultation with the TC gurus at Indiana U. next week he didn't want them to think my local care team were a bunch of brainless idiots (I secretly wondered if the extra round of chemo wasn't payback for me brownbagging my Neulasta shots).
All this is to say that Easter Sunday will not mark the end of chemotherapy - it will continue for an additional three weeks (until mid April - right around tax time, another appropriate calendar marker).
Other than that, we managed to avoid any Bleomycin side effects this time by keeping me pumped up with Tylenol and Benadryl, plus plenty of fluids. I think I may getting into a rhythm here (a frightening thought)...
At home the afternoon of R2D8, sans hat.
Yes, we are dancing. Before dinner Monday night (R2D8) we are jamming to our new favorite CD the Duhks.
And honestly, many of you will have a hard time beliveing it, but we dug them before we saw this.
The song we are dancing to is: "Death Came a Knockin'"
Sunday, February 20, 2005
Thank you, Gillette!
There's an old saying that nothing is impossible for the person who doesn't have to do it himself. The powers of the internet have come through with flying colors, and I am the proud recipient of a box of Gillette Blueboy badges, courtesy of some very nice PR folks in the UK.
This is the box of blue boys he got in the mail on Friday.
I handed out several to the chemo nurses and docs, as well as to folks at church and some online friends who asked nicely. I'll be sending some out to family members next week.
Again, I wish our American puritanical prude factor wasn't so high, otherwise we could have a PR campaign like this here in the states. But in the meantime, I would wager there are less than 200 of these suckers circulating in the US, and 50 of them have issued from my grubby little paws. Can you feel the power? Are you impressed? I've even gotten some contributions for the pins, which I will try to funnel back to Cancer Research UK, if the power of the 'net permits (they do have an online donation page).
The funniest thing about these badges is that they come with a little foldout with some drawings of how to perform a self-check of the boys. Not safe for work or for the kids!
This is the box of blue boys he got in the mail on Friday.
I handed out several to the chemo nurses and docs, as well as to folks at church and some online friends who asked nicely. I'll be sending some out to family members next week.
Again, I wish our American puritanical prude factor wasn't so high, otherwise we could have a PR campaign like this here in the states. But in the meantime, I would wager there are less than 200 of these suckers circulating in the US, and 50 of them have issued from my grubby little paws. Can you feel the power? Are you impressed? I've even gotten some contributions for the pins, which I will try to funnel back to Cancer Research UK, if the power of the 'net permits (they do have an online donation page).
The funniest thing about these badges is that they come with a little foldout with some drawings of how to perform a self-check of the boys. Not safe for work or for the kids!
Friday, February 18, 2005
My friend Emend
Cycle 2, week 1. The nausea gets worse progressively during the week, and by Friday it's really dragging me down. I never get physically sick, but the gag reflex is there every time I lean over. I'd much prefer to just get it over with and vomit, but no such relief.
Fortunately, there is better living available through pharmaceuticals. The fine folks at Merck make this little gem of a drug called Emend, which is sort of like a Z-pack for the chemo crowd. You get three pills - one heavy dose for the first day, and two lighter doses for the next two days. The good news is, it worked like a champ. I felt much better. No more gagging.
The bad news is twofold: First, it's freakin' expensive (but what good drug isn't?) - about $350 for the three capsules. Also, the insurance goons weighed in and said they'd need two days to go through the approval process before they'd agree to pay for it. Of course, this was Friday, so that meant it would be the following Tuesday or Wednesday by the time things snaked their way through the system. Well, that's all well and good, but I need it today, not next week.
So we went out on a limb and paid for it out of pocket, in the hope that things will work themselves out in the end. Thank goodness for the Discover cash back bonus! We financed our wedding on Discover, why not cancer as well? (The pre-chemo trip certainly was, anyway)
We'll have to keep on top of the paper chase to make sure things get taken care of. In the meantime, it's dinner time!
This is round 2 week 2 day 5. Emend day. While he felt really sick, he is watching the movie Harold and Kumar go to White Castle and found it very, very funny.
Fortunately, there is better living available through pharmaceuticals. The fine folks at Merck make this little gem of a drug called Emend, which is sort of like a Z-pack for the chemo crowd. You get three pills - one heavy dose for the first day, and two lighter doses for the next two days. The good news is, it worked like a champ. I felt much better. No more gagging.
The bad news is twofold: First, it's freakin' expensive (but what good drug isn't?) - about $350 for the three capsules. Also, the insurance goons weighed in and said they'd need two days to go through the approval process before they'd agree to pay for it. Of course, this was Friday, so that meant it would be the following Tuesday or Wednesday by the time things snaked their way through the system. Well, that's all well and good, but I need it today, not next week.
So we went out on a limb and paid for it out of pocket, in the hope that things will work themselves out in the end. Thank goodness for the Discover cash back bonus! We financed our wedding on Discover, why not cancer as well? (The pre-chemo trip certainly was, anyway)
We'll have to keep on top of the paper chase to make sure things get taken care of. In the meantime, it's dinner time!
This is round 2 week 2 day 5. Emend day. While he felt really sick, he is watching the movie Harold and Kumar go to White Castle and found it very, very funny.
Thursday, February 17, 2005
The Power of Blue Hair & Natural Highlights
I have always said you can never have enough little old ladies or blue hairs praying for you. Those prayers spearheaded by my two grandmothers & others in the 70+ group got me through seminary. Seriously.
As for hair that still has its natural, stunning, can’t find in a bottle highlights (even though some of us try…), I’m speaking of children, the 10 and under set in particular: the mantra of “shrink, shrink, shrink” that the children from our church are praying is working. It is a delight to hear of the wee ones in this group who insist upon keeping Frank in their prayers, their stubborn determination, a natural characteristic that can at times be annoying to those who work closely with them, is a boon to Frank.
In other words: prayers from those with natural highlights added to the blue hair variety and all the others of you in between are clearly working. Thank you all!
While it is never easy to get chemo, Frank is doing well. He is feeling EXTRME tiredness. (He is currently in the middle of an epic nap.) Tuesday the weather was beautiful, upper 60's low 70’s. When we got home he bemoaned that he didn’t have the energy to pull out his hammock (in winter storage) so he could be outside, enjoy the day and sleep (which is what he does when he gets home from the long chemo days.) Now, before any of the local types get upset for me not calling to have them come and do this: I suggested that I get a sleeping bag out and set him up on the front porch.
He slept out there for almost 3 hours.
Like this:
You can't tell, but it is 65 degrees outside and a beautiful day.
He did it for about an hour yesterday even though the temps were only in the 40s.
The only problem with this was that each day the UPS man decided to deliver at about the time he fell asleep. You need to also know that the dog feels obliged to announce the presence of any strange vehicle in our drive. He is so diligent that sometime he announces people who AREN’T EVEN THERE, he’s our very own Haley Joel Osmond. Needless to say a body laying on the front porch in the middle of the day in a sleeping bag kinda wigged the UPS man out, *heh* *heh* *heh*.
This would be the vision that made the UPS man do a double take.
Never a dull moment.
We are finding ways to deal with static cling of the tiny hairs that have already fallen out, “Do you think “X” would work? Sure, let’s try.” (lint rollers help)
As for nausea that is being controlled by meds. The only smell that is really getting to him is the popcorn that is popped in the chemo room kitchenette throughout the day. For some this is a good smell; it’s not for Frank. A push of Ativan and some peppermint oil to hold to his nose and he’s ok.
Frank is also becoming quite a celebrity in his own right. People who work in places other than the chemo room are making trips through the room just to see him. Guess why:
Monday you saw Pharaoh:
do you have a saline scepter?
Tuesday was “Tim the Enchanter” from Monty Python’s the Holy Grail:
They call me, Tim.....
The funniest comment was as we left from a fellow patient in the waiting room, “My you’re looking horny today.” While the following was taken before the comment, you can see the look in his eyes, can't you?
Sponge Bob is always near by, even for TIM THE ENCHANTER!
Wednesday was Pipi in a chef’s hat:
Yep, it's THAT t-shirt again. Darn squirrels.
We spent about an hour fishing the “correct” hanger through the pig-tails to get them to stand on end properly.
Today, Thursday was the Daisy Head, or Wall Flower (HA!) as he described when asked.
Vinny the "wall flower"
A surprise for him however was that when we arrived, the ladies at the reception desk we ready for him:
They were ready for him, even let him pose with them for a picture.
When he came around the corner to check in, the ladies in the reception area were all "minding their own beez-wax, but all had their own unique chapeau's on. They got him good.
On a related note: Is it a good thing that he has:
1) this power over people?
2) that he is leading them down this path?
3) a wife that encourages him?
In my defense I do remind him often to use his powers for good, not evil.
just one more Wall Flower pose:
Watching a move, Anchorman.
In other news, speaking of natural highlights…
Here’s a picture of the child whose hair color I’d like to have:
This is the little red head that made the Sponge Bob prayer quilt.
In the past she and Frank have bonded over Dora the Explorer DVDs. You know the one; the main character is a bilingual little girl who SHOUTS EVERYTHING SHE SAYS.
Her parents offered to let me take her with me to the hair dresser, I declined. Attention parents of said red-head: I’m wise to your “free baby sitter schemes”! (Just kidding, you know we love to spend time with her.) See:
This is up with her last December.
For those of you who voted for purple, which did, by the way, win the poll, I say thanks. But I also must apologize, purple wasn’t an option for my hairdresser, Brandy. The color wouldn’t have stayed. And I pay her a lot to color it, so I want it to stay. Furthermore, the additional gray that this life situation has caused had to be covered. Thank you to my sweet, younger seester for not saying anything (wink wink nudge nudge). She did however say: “I don’t have any gray yet.” Brandy did however breathe a HUGE sigh of relief when I was telling her why I was there and I assured her that I wasn’t there to get it shaved off in solidarity. Just colored.
Drum roll please:
Here’s a picture of me and how it turned out:
ACK!, it hasn't been taken yet!
Sorry for the big build up. I haven't had Frank take a picture of me yet. I'll add it as soon as he wakes up and I remember to have him take the camera.....
Until then may you all get a power nap in!
Peace,
The Rev.
As for hair that still has its natural, stunning, can’t find in a bottle highlights (even though some of us try…), I’m speaking of children, the 10 and under set in particular: the mantra of “shrink, shrink, shrink” that the children from our church are praying is working. It is a delight to hear of the wee ones in this group who insist upon keeping Frank in their prayers, their stubborn determination, a natural characteristic that can at times be annoying to those who work closely with them, is a boon to Frank.
In other words: prayers from those with natural highlights added to the blue hair variety and all the others of you in between are clearly working. Thank you all!
While it is never easy to get chemo, Frank is doing well. He is feeling EXTRME tiredness. (He is currently in the middle of an epic nap.) Tuesday the weather was beautiful, upper 60's low 70’s. When we got home he bemoaned that he didn’t have the energy to pull out his hammock (in winter storage) so he could be outside, enjoy the day and sleep (which is what he does when he gets home from the long chemo days.) Now, before any of the local types get upset for me not calling to have them come and do this: I suggested that I get a sleeping bag out and set him up on the front porch.
He slept out there for almost 3 hours.
Like this:
You can't tell, but it is 65 degrees outside and a beautiful day.
He did it for about an hour yesterday even though the temps were only in the 40s.
The only problem with this was that each day the UPS man decided to deliver at about the time he fell asleep. You need to also know that the dog feels obliged to announce the presence of any strange vehicle in our drive. He is so diligent that sometime he announces people who AREN’T EVEN THERE, he’s our very own Haley Joel Osmond. Needless to say a body laying on the front porch in the middle of the day in a sleeping bag kinda wigged the UPS man out, *heh* *heh* *heh*.
This would be the vision that made the UPS man do a double take.
Never a dull moment.
We are finding ways to deal with static cling of the tiny hairs that have already fallen out, “Do you think “X” would work? Sure, let’s try.” (lint rollers help)
As for nausea that is being controlled by meds. The only smell that is really getting to him is the popcorn that is popped in the chemo room kitchenette throughout the day. For some this is a good smell; it’s not for Frank. A push of Ativan and some peppermint oil to hold to his nose and he’s ok.
Frank is also becoming quite a celebrity in his own right. People who work in places other than the chemo room are making trips through the room just to see him. Guess why:
Monday you saw Pharaoh:
do you have a saline scepter?
Tuesday was “Tim the Enchanter” from Monty Python’s the Holy Grail:
They call me, Tim.....
The funniest comment was as we left from a fellow patient in the waiting room, “My you’re looking horny today.” While the following was taken before the comment, you can see the look in his eyes, can't you?
Sponge Bob is always near by, even for TIM THE ENCHANTER!
Wednesday was Pipi in a chef’s hat:
Yep, it's THAT t-shirt again. Darn squirrels.
We spent about an hour fishing the “correct” hanger through the pig-tails to get them to stand on end properly.
Today, Thursday was the Daisy Head, or Wall Flower (HA!) as he described when asked.
Vinny the "wall flower"
A surprise for him however was that when we arrived, the ladies at the reception desk we ready for him:
They were ready for him, even let him pose with them for a picture.
When he came around the corner to check in, the ladies in the reception area were all "minding their own beez-wax, but all had their own unique chapeau's on. They got him good.
On a related note: Is it a good thing that he has:
1) this power over people?
2) that he is leading them down this path?
3) a wife that encourages him?
In my defense I do remind him often to use his powers for good, not evil.
just one more Wall Flower pose:
Watching a move, Anchorman.
In other news, speaking of natural highlights…
Here’s a picture of the child whose hair color I’d like to have:
This is the little red head that made the Sponge Bob prayer quilt.
In the past she and Frank have bonded over Dora the Explorer DVDs. You know the one; the main character is a bilingual little girl who SHOUTS EVERYTHING SHE SAYS.
Her parents offered to let me take her with me to the hair dresser, I declined. Attention parents of said red-head: I’m wise to your “free baby sitter schemes”! (Just kidding, you know we love to spend time with her.) See:
This is up with her last December.
For those of you who voted for purple, which did, by the way, win the poll, I say thanks. But I also must apologize, purple wasn’t an option for my hairdresser, Brandy. The color wouldn’t have stayed. And I pay her a lot to color it, so I want it to stay. Furthermore, the additional gray that this life situation has caused had to be covered. Thank you to my sweet, younger seester for not saying anything (wink wink nudge nudge). She did however say: “I don’t have any gray yet.” Brandy did however breathe a HUGE sigh of relief when I was telling her why I was there and I assured her that I wasn’t there to get it shaved off in solidarity. Just colored.
Drum roll please:
Here’s a picture of me and how it turned out:
ACK!, it hasn't been taken yet!
Sorry for the big build up. I haven't had Frank take a picture of me yet. I'll add it as soon as he wakes up and I remember to have him take the camera.....
Until then may you all get a power nap in!
Peace,
The Rev.
Wednesday, February 16, 2005
Tumor markers keep falling
Good news from the latest blood test. The tumor markers are falling! Alpha-Fetoprtotein (AFP) is marked in purple and should be looked at using the right side scale. It has fallen from a high of 11,600 down to 1,638 (still well above normal levels of 0-8 ng/ml). All in all a good sign that the chemo is doing its job. And as a plus, my beta-HCG levels (red markers, use the left side scale) have fallen from 460 down to 2, which means I'm no longer pregnant! (beta-HCG, in additional to being a TC tumor marker, is the hormone used more commonly to track pregnancy in pre-meonpausal women)
Cycle 2, week 1 continues...I have a CT scheduled for Feb. 28, after which we'll compare the before and after (chemo) films. Then we pack up the stuff and head to IU for a consultation.
Monday, February 14, 2005
Round Two Day One
It is amazing how tired one can feel after waiting. That is what we did today, wait. (I know if I don't blog there will be worried ones of you out there so, for you I type) After eating dinner tonight and then planting myself in front of the TV for a few moments weariness eased into my bones. I sat to long today hunched over this computer! But I did get some work done. Perhaps a bubble bath is in my future? Frank just brought me some Sparky's Cake Batter Ice Cream, the day is really looking up!
Frank is doing well. I asked at dinner (over candlelight no less!, well it is Valentines Day) what kind of day it was (on a scale of 1-10) he reports it is a 6. He seems to be feeling better than he did this time last Monday even though today was long. We were there at 8:30am, but the poison didn't start dripping until after he met with Dr. V just before noon. At least he had the hour or so of saline dripping during the morning…. Tomorrow we arrive at 8:30 and it should all go quicker.
Dr. V is pleased with the way Frank's tumor markers are falling. He speculates that when the next CT scan is done (Feb 28) the mass will be 2X2 shrunk down from 6X10. He's just guessing, but all signs point to shrinkage! He is also supportive of the trip will are making to Indiana for the second opinion regarding the RPLND.
In other news, in the vein of keeping sane…. (Some of you may question our sanity, but each person holds on to it the only way they know how.) Thank you to all who voted in the chapeau quiz over the weekend. Despite reported ballot stuffing for "Tim the Enchanter" (ballot stuffers remember: cheaters never win and winners never cheat), the Pharaoh hat won out by 3 votes as we left this morning for chemo. (There was a different poll several days ago, more on the results of that tomorrow.)
This morning as we walked into the cancer box (the building where we go looks like a box, it is gray and white on the outside) a part of me remembered what it felt like being in the band: a bit giddy and excited, whilst brining the gift of music and costume to those who didn’t know they wanted it and weren’t sure what had hit them when we finished. It is hard to describe for those not in the band. It falls somewhere in the balance between embarrassment and thrill and fun and being fully alive.
What is so interesting is the number of people who DON'T say a word when a man walks into a building wearing a blue and gold lamé hat w/ a green cobra on top. Maybe that is the difference between Atlanta GA and mid Missouri? Perhaps some think that people with cancer should act more serious? (Not in Frank’s nature, nor mine I guess.) Tomorrow may push some of them to speak as he will don Tim the Enchanter, with gold lamé horns. And if tomorrow doesn't do it he will wear them down because we have a HUGE collection of head coverings.....I KNEW keeping my band costumes was a good idea.
For the record, many people DID enjoy it and the nurses of course know that he's a fun guy to mess around with. Dr. V said, "You're a nut." I should have asked if that makes up for him losing one....(DID *I* just say that? e-gads!)
Because you are all anxious to see it on him, here's today’s chapeau picture:
Round Two Day One: the Pharaoh and his Nurse...
And in this one notice his scepter (aka an IV poll).
Do you have a saline scepter?
He became quite a vision when he chilled over and needed the quilt. (Warning, you may need to wear sun glasses to view this picture.)
The Pharaoh, the scepter, and the quilt, you'd obey this man's orders wouldn't you?
Thank you for all the ways that you are supporting us. We can definitely feel the power of the thoughts and prayers you are sending our way. We are so grateful. Blessings to you all.
Blogger seems to be having issues tonight, so thank you for your patience in waiting for the post. In the mean time, walk like an Egyptian....
Peace, Sarah
Frank is doing well. I asked at dinner (over candlelight no less!, well it is Valentines Day) what kind of day it was (on a scale of 1-10) he reports it is a 6. He seems to be feeling better than he did this time last Monday even though today was long. We were there at 8:30am, but the poison didn't start dripping until after he met with Dr. V just before noon. At least he had the hour or so of saline dripping during the morning…. Tomorrow we arrive at 8:30 and it should all go quicker.
Dr. V is pleased with the way Frank's tumor markers are falling. He speculates that when the next CT scan is done (Feb 28) the mass will be 2X2 shrunk down from 6X10. He's just guessing, but all signs point to shrinkage! He is also supportive of the trip will are making to Indiana for the second opinion regarding the RPLND.
In other news, in the vein of keeping sane…. (Some of you may question our sanity, but each person holds on to it the only way they know how.) Thank you to all who voted in the chapeau quiz over the weekend. Despite reported ballot stuffing for "Tim the Enchanter" (ballot stuffers remember: cheaters never win and winners never cheat), the Pharaoh hat won out by 3 votes as we left this morning for chemo. (There was a different poll several days ago, more on the results of that tomorrow.)
This morning as we walked into the cancer box (the building where we go looks like a box, it is gray and white on the outside) a part of me remembered what it felt like being in the band: a bit giddy and excited, whilst brining the gift of music and costume to those who didn’t know they wanted it and weren’t sure what had hit them when we finished. It is hard to describe for those not in the band. It falls somewhere in the balance between embarrassment and thrill and fun and being fully alive.
What is so interesting is the number of people who DON'T say a word when a man walks into a building wearing a blue and gold lamé hat w/ a green cobra on top. Maybe that is the difference between Atlanta GA and mid Missouri? Perhaps some think that people with cancer should act more serious? (Not in Frank’s nature, nor mine I guess.) Tomorrow may push some of them to speak as he will don Tim the Enchanter, with gold lamé horns. And if tomorrow doesn't do it he will wear them down because we have a HUGE collection of head coverings.....I KNEW keeping my band costumes was a good idea.
For the record, many people DID enjoy it and the nurses of course know that he's a fun guy to mess around with. Dr. V said, "You're a nut." I should have asked if that makes up for him losing one....(DID *I* just say that? e-gads!)
Because you are all anxious to see it on him, here's today’s chapeau picture:
Round Two Day One: the Pharaoh and his Nurse...
And in this one notice his scepter (aka an IV poll).
Do you have a saline scepter?
He became quite a vision when he chilled over and needed the quilt. (Warning, you may need to wear sun glasses to view this picture.)
The Pharaoh, the scepter, and the quilt, you'd obey this man's orders wouldn't you?
Thank you for all the ways that you are supporting us. We can definitely feel the power of the thoughts and prayers you are sending our way. We are so grateful. Blessings to you all.
Blogger seems to be having issues tonight, so thank you for your patience in waiting for the post. In the mean time, walk like an Egyptian....
Peace, Sarah
A short sidebar on health insurance
WARNING: I am putting on my CPA hat here (it was not included in the poll, btw). The following discussion may only be of interest to accountants and Libertarians, and since I happen to be both, I find it interesting. YMMV.
I found out this weekend that I have satsified my $1,750 deductible (which is the same as my out-of-pocket limit) for 2005. This means that any covered in-network expenses will be paid at 100% for the rest of the year. Good news - that's what catostrophic coverage (which is what a $1,750 deductible really means) is for.
Now, my deductible is rather high, but this is no accident. My employer has set up Health Savings Accounts (HSAs) for us (formerly known as Archer Medical Savings Accounts). This strange breed was created by Congress as sort of a test case for individuals to manage their health dollars wisely. Here's the way it works. The employee or employer can contribute up to the deductible amount to the employee's HSA each year (employer contributions are tax-free; employee contributions are tax-deductible). The money can be used for most any legitimate medical expense, even those not covered under the medical plan (dental, orthodontia, etc.). As long as a withdrawal is used for a medical expense, the money comes out tax free.
However, the money in the HSA always belongs to the employee, so there's no "use it or lose it issue" like there is with cafeteria plans and flexible spending accounts. This gives the employee an incentive to a) seek quality care at a reasonable price and b) not run to the doctor every time they sneeze. The long-term upshot to a HSA is that once the emplyee reaches retirement age, the funds are available to supplement retirement income (those withdrawals would be subject to tax, where any withdrawal for medical expenses would not be taxed).
I personally like the HSA arrangement - it's a way to bring health care decisions back to the consumer. Granted, I am fortunate that my employer's policy is to fully fund the employee's HSA each year up to the deductible amount (the total annual cash outlay, even when adding the HSA contributions to the actual premimums is still cheaper than going with a traditional HMO-like arrangement with co-pays and the like). Anyway, I see the idea catching on and potentially slowing the runaway freight train of health costs.
BTW, for those of you interested, the total costs on the table so far (at least the charges turned in to insurance) are over the $20,000 mark. Hardly any of the chemo costs have been turned in yet. Some of the charges date to 2004 so I'll be on the hook for about $500 there, but I have money in the HSA for just such an emergency.
I found out this weekend that I have satsified my $1,750 deductible (which is the same as my out-of-pocket limit) for 2005. This means that any covered in-network expenses will be paid at 100% for the rest of the year. Good news - that's what catostrophic coverage (which is what a $1,750 deductible really means) is for.
Now, my deductible is rather high, but this is no accident. My employer has set up Health Savings Accounts (HSAs) for us (formerly known as Archer Medical Savings Accounts). This strange breed was created by Congress as sort of a test case for individuals to manage their health dollars wisely. Here's the way it works. The employee or employer can contribute up to the deductible amount to the employee's HSA each year (employer contributions are tax-free; employee contributions are tax-deductible). The money can be used for most any legitimate medical expense, even those not covered under the medical plan (dental, orthodontia, etc.). As long as a withdrawal is used for a medical expense, the money comes out tax free.
However, the money in the HSA always belongs to the employee, so there's no "use it or lose it issue" like there is with cafeteria plans and flexible spending accounts. This gives the employee an incentive to a) seek quality care at a reasonable price and b) not run to the doctor every time they sneeze. The long-term upshot to a HSA is that once the emplyee reaches retirement age, the funds are available to supplement retirement income (those withdrawals would be subject to tax, where any withdrawal for medical expenses would not be taxed).
I personally like the HSA arrangement - it's a way to bring health care decisions back to the consumer. Granted, I am fortunate that my employer's policy is to fully fund the employee's HSA each year up to the deductible amount (the total annual cash outlay, even when adding the HSA contributions to the actual premimums is still cheaper than going with a traditional HMO-like arrangement with co-pays and the like). Anyway, I see the idea catching on and potentially slowing the runaway freight train of health costs.
BTW, for those of you interested, the total costs on the table so far (at least the charges turned in to insurance) are over the $20,000 mark. Hardly any of the chemo costs have been turned in yet. Some of the charges date to 2004 so I'll be on the hook for about $500 there, but I have money in the HSA for just such an emergency.
Sunday, February 13, 2005
Poll update
Covering his head in style! (Not necessarily a style that anyone else would want to copy, but a style nonetheless.)
You still have time to vote. Me thinks we'll check the results tomorrow morning before we leave...No doubt we'll check back later tonight too.
If you still want to vote, please do so in the post below the pictures I posted this afternoon.
So, as of 3:40 pm CST here are the current rankings with 43 of you having voted. (for the record, I, nor Frank, have voted....it is ALL up to you.) Thanks!
Tim the Enchanter (32%)
Pharaoh (30%)
Pipi wearing a chef hat (19%)
Union Jack (7%)
Daisy head (7%)
Uncle Sam (4%)
You still have time to vote. Me thinks we'll check the results tomorrow morning before we leave...No doubt we'll check back later tonight too.
If you still want to vote, please do so in the post below the pictures I posted this afternoon.
So, as of 3:40 pm CST here are the current rankings with 43 of you having voted. (for the record, I, nor Frank, have voted....it is ALL up to you.) Thanks!
Tim the Enchanter (32%)
Pharaoh (30%)
Pipi wearing a chef hat (19%)
Union Jack (7%)
Daisy head (7%)
Uncle Sam (4%)
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