Tuesday morning was the big PET scan. It was raining, chilly and grey. I took advantage of the valet when I arrived at the hospital, a patient perk I tried to strictly avoid throughout treatment as it seemed like that would be giving in to cancer. When I checked in at registration I was escorted back out into the rain, to the mobile scan unit I had passed in the parking lot on my way in.
Shelly, the tech, sat me down in a tiny little room at one end of the trailer, verified that I had properly fasted, tested my glucose level, asked me twice if I might be pregnant and than inserted an IV of FDG, a radioactive glucose that would be taken in by any cancer cells. Then she left, closing the reinforced door behind her so that she and her lab partner would experience less exposure themselves. No magazines, no TV, work email slow, I was left alone with nothing but my own thoughts. I tried to focus on the muzak, make lists of things I had to do before surgery, pre-draft a blog entry in my head, anything to avoid thinking about the possibility that this test might not yield the results I needed it to. After 45 minutes, enough time to allow the glucose to spread throughout my body, I spent 20 minutes on the table for the scans. When I left they gave me a goody bag of crackers and chocolate. Someone asked me if it felt very surreal, but this entire journey has been surreal.
Waiting for two days wasn't as bad as I thought it would be. Once outside that tiny room and absorbed in the day to day of life again, I was right back to believing all would be right. Except for that last hour before the appointment, sitting in my office sweating it out. What if he doesn't have results? What if there's a spot on my liver? What if? But all is right. Dr. Fisher didn't make me wait at all - before he was even over the threshold of the examination room yesterday he blurted out the PET scan was normal. No detectable cancer, complete remission. So there Steve and I are - crying, hugging, kissing, breathing - and then pulling ourselves together to talk through the rest of our questions, to understand what the next five years holds.
Regardless of what I have to look forward to in terms of surgery, scans and blood tests, despite the 30% chance of recurrence, ignoring the anxiety I know I'll feel periodically the next few years as I constantly question every twinge and ache...today I'm cancer free, today we celebrate.
Friday, October 15, 2010
Monday, October 4, 2010
Chew On It
Today is the first Monday that I didn't have to go in for treatment. Oh, what a relief it is...
Side effects had started to really linger, initially lasting two or three days but then running out to 10 or more. So essentially, I would start to feel better by say Friday, and Monday I would start all over. That meant a lot of weekends I was quietly bracing myself, relaxing, napping, trying to conserve energy for the rollercoaster on Monday.
Not this weekend, though. This weekend I cooked, and it was more than scrambled eggs and toast. I took Donovan to the Fall festival at the Historic Park - hay rides, caramel apples, honey sticks, cowboys and indians. We went to the playground and out for happy hour. We drove around in the parking garage at the mall for 15 minutes after grocery shopping because Donovan thinks it is a tunnel. I went running. Twice. It wasn't great, but I managed to piece together a few miles each day. I ran to Bon Jovi, which reminds me of being young and carefree, when my biggest worry was getting my hair big enough. My thighs hurt today, and it feels good. It was a meaty weekend.
Throughout the last week, I've read or heard some inspiring notes that hit home. Messages I'll call up when I'm being rolled into that big scanner Thursday, or when my chest aches and I'm out of breath, thinking about slowing to a walk before that next light pole. I thought they were worth passing along.
Side effects had started to really linger, initially lasting two or three days but then running out to 10 or more. So essentially, I would start to feel better by say Friday, and Monday I would start all over. That meant a lot of weekends I was quietly bracing myself, relaxing, napping, trying to conserve energy for the rollercoaster on Monday.
Not this weekend, though. This weekend I cooked, and it was more than scrambled eggs and toast. I took Donovan to the Fall festival at the Historic Park - hay rides, caramel apples, honey sticks, cowboys and indians. We went to the playground and out for happy hour. We drove around in the parking garage at the mall for 15 minutes after grocery shopping because Donovan thinks it is a tunnel. I went running. Twice. It wasn't great, but I managed to piece together a few miles each day. I ran to Bon Jovi, which reminds me of being young and carefree, when my biggest worry was getting my hair big enough. My thighs hurt today, and it feels good. It was a meaty weekend.
Throughout the last week, I've read or heard some inspiring notes that hit home. Messages I'll call up when I'm being rolled into that big scanner Thursday, or when my chest aches and I'm out of breath, thinking about slowing to a walk before that next light pole. I thought they were worth passing along.
- 'If we don't have some perils, fears, ups and downs, don't take some risks, don't have some set-backs, how do we recognize just how much we have?' ~ Roxann Johnson
- 'Life is good and we should live passionately!' ~ Tasha Fontanes
- 'Serenity is not freedom from the storm, but peace amid the storm. Being happy doesn't mean everything is perfect. It means you 've decided to look beyond the imperfections.' ~ James Covino
- 'Back to full strength 100 yards at a time...' ~ Kevin Cuddie
- 'That was a fun hay hay, we should do it again tomorrow, Mommy.' ~ Donovan
Thursday, September 30, 2010
Next Steps
Though I'm still basking in having finished four months of chemo, there's still much to be done. Here's an outline of next steps;
- 10/5 - Consult with the surgeon in preparation for the ileostomy reversal, commonly called the 'takedown'.
- 10/7 - Testing of anastomosis. This basically verifies that I don't have any colon blockages or leaks as a result of the first surgery, which would impede the takedown. Once again, I'll be bare-assed on a table with a bunch of strangers. This from the chick who changes in a bathroom stall in the gym locker room and never peed in front of even her best girlfriends.
- 10/12 - PET/CT scan. Technically, they'll give me an IV of a tracer, a slightly radioactive glucose, wait an hour and then scan me. Any area of the body with abnormally high metabolic activity (cancer) would have a higher glucose intake, so the tracer will be highly attracted to those areas and would show up on that scan. But I know this house is clean!
- 10/14 - Review results of the scan with my oncologist.
- 10/14 (Evening) - Substantial intake of really good champagne.
- 10/25 - Takedown surgery, which will keep me in the hospital about three days and home on leave about four weeks. Even after less than six months with the ostomy, this will be a slow recovery as my colon remembers how it is supposed to work...I'm told it will likely be a year before I really feel 'normal'. Still, Mommy's 'boo-boo' will be no more.
- TBD - Port removal.
- February, 2011 to October, 2015 - For the first three years, I've have an annual CT scan, with blood work every three months. Years four and five I'll have blood work every six months, with an annual scan. And for the rest of my life I can look forward to colonoscopies every two years...
Despite the fact that there's some really rough stuff in the plan, I'm OK with it all. Everything up to this point was about killing the cancer inside me - everything from this point forward is intended to make me whole, help me recover and move on, and get back to just being me.
Monday, September 27, 2010
Finito!
I've been remiss in updating here, as Kane reminds me with relative frequency, and I do feel guilty about that. But, the time has not been wasted, rather filled with sweet events, so I can't be hard on myself. I could swear I posted something about lucky treatment number 7, which I did construct in my head, but apparently never put it to keyboard...
Treatments five and six were rough. My kick-over-the-speakers attitude was beginning to wan a bit. Sandwiched between six and seven however, Stephen and Katie came to visit. Getting to know Katie, who I gather is going to be around awhile, and seeing my brother in love, was a great distraction. The seventh treatment the following week was easier than five and six, I think because there was finally an end in sight. And with Mom in town that following weekend, recovery was easier on us all - there was a third person in the rotation for hide-and-seek, tricycle training and bath-time!
After that following week off treatment, we had a three day weekend in Napa for Jen and Mike's wedding. A day of touring wineries with friends via limo, a day off with Steve touring by bicycle, some really fabulous food, a candlelit wedding under the stars, lots of laughs and moments with great friends, the comfort of knowing Donovan was home with Yenny riding the train and eating ice cream each evening...I came back on a high and that carried right into the eighth and final post surgical treatment, which started our first day back.
Although it has been the hardest physically, it was the easiest mentally. Throughout those three days last week, no matter the nausea and that chemical taste, no matter how bad the burning in my hands and mouth, no matter a few more eyelashes - I truly believe I will never have to do this again and that made it easier to power through. And then there I was, after three and a half months of treatment, being unplugged Wednesday afternoon...rounds of hugs from all the nurses, cheers from the receptionists on my way out the door, a flood of relief and tears in the car home. It was actually hard to put into words how good it felt to be done. And then, on Thursday evening, my niece, Kasey Gabrielle Metz was born and Keith was quickly able to put it into words...she and I now share the first day of the rest of our lives.
Treatments five and six were rough. My kick-over-the-speakers attitude was beginning to wan a bit. Sandwiched between six and seven however, Stephen and Katie came to visit. Getting to know Katie, who I gather is going to be around awhile, and seeing my brother in love, was a great distraction. The seventh treatment the following week was easier than five and six, I think because there was finally an end in sight. And with Mom in town that following weekend, recovery was easier on us all - there was a third person in the rotation for hide-and-seek, tricycle training and bath-time!
After that following week off treatment, we had a three day weekend in Napa for Jen and Mike's wedding. A day of touring wineries with friends via limo, a day off with Steve touring by bicycle, some really fabulous food, a candlelit wedding under the stars, lots of laughs and moments with great friends, the comfort of knowing Donovan was home with Yenny riding the train and eating ice cream each evening...I came back on a high and that carried right into the eighth and final post surgical treatment, which started our first day back.
Although it has been the hardest physically, it was the easiest mentally. Throughout those three days last week, no matter the nausea and that chemical taste, no matter how bad the burning in my hands and mouth, no matter a few more eyelashes - I truly believe I will never have to do this again and that made it easier to power through. And then there I was, after three and a half months of treatment, being unplugged Wednesday afternoon...rounds of hugs from all the nurses, cheers from the receptionists on my way out the door, a flood of relief and tears in the car home. It was actually hard to put into words how good it felt to be done. And then, on Thursday evening, my niece, Kasey Gabrielle Metz was born and Keith was quickly able to put it into words...she and I now share the first day of the rest of our lives.
Wednesday, August 25, 2010
We're Going Bananas
Monday was the start of treatment number six, though it almost didn't happen. I've hit that point where my counts have kind of bottomed out, particularly my white blood cells, platelets and potassium. Platelets and white blood cells I get. Not being able to fight off infection is an obvious danger and something I think about each day as I see the list of confirmed illness on the board at Van's school...pink eye, croup, fifth's disease.
But potassium? Is that really critical, I asked? Silly me...your muscles need potassium to contract, your heart to regulate blood pressure and the rest of your body to maintain cellular processes. Low potassium, or Hypokalemia (check out the big brain on Brad...), makes you weak. I'm sure this is contributing to my staggering out of bed each morning completely zapped of energy after a solid 10 hours of ambien induced sleep, as if I've slept all night with a lump of kryptonite under my pillow.
So, after I promised to stock up on potassium rich foods and shun all sick people, the doc agreed to treatment. Van and I are now locked in competition to see who can eat the most bananas and canteloupe, although he still gets the highly valued 'sticker banana'. After he proudly peals that sticker off and hands it to me I wait until he isn't looking and then stick it back on another banana in the bunch, so we never run out.
But potassium? Is that really critical, I asked? Silly me...your muscles need potassium to contract, your heart to regulate blood pressure and the rest of your body to maintain cellular processes. Low potassium, or Hypokalemia (check out the big brain on Brad...), makes you weak. I'm sure this is contributing to my staggering out of bed each morning completely zapped of energy after a solid 10 hours of ambien induced sleep, as if I've slept all night with a lump of kryptonite under my pillow.
So, after I promised to stock up on potassium rich foods and shun all sick people, the doc agreed to treatment. Van and I are now locked in competition to see who can eat the most bananas and canteloupe, although he still gets the highly valued 'sticker banana'. After he proudly peals that sticker off and hands it to me I wait until he isn't looking and then stick it back on another banana in the bunch, so we never run out.
Monday, August 16, 2010
No Whining Please!
Last week was an 'on' week, chemo Mon-Wed. My doctor had told me that it would start to run downhill at the fourth treatment, but then the fourth went so well I almost didn't believe him. Still, the evening before the fifth I felt a sense of dread and self pity, something I can honestly say I've been able to easily side step up until then. I just want to be done and get back to life as we know it. And on top of that, I had tried to go for a run, but four months of doing little more than walking to the park made for a demoralizing experience. My legs were tight, I was out of breath, and I had to link spurts of walking and running just to get to the the 2 mile mark! Throughout Sunday evening, I was feeling sorry for myself and my inside voice was emitting a high and constant whine. Even online shopping and some smokin' deals on last year's ski wear wasn't enough to pull me out of my funk.
So, needless to the say, the fifth treatment arrived anyway, and it was, as the doctor predicted, worse. The side effects I do have like nausea and nueropathy are a little more extreme and lasting a little longer with each treatment. Plus, a few new side effects have started to pop up. I've noticed a little more hair on the bathroom floor when I'm done with the blowdryer, but luckily given the amount of hair I have, even my hairdresser of eight years can't tell the difference. I do however, seem to be missing most of my lower lid eyelashes suddenly. And I've started to get bloody noses, as the chemo can effect the membranes throughout your body. Super.
So all of last week I felt pretty crummy. And then Steve went off to the mountains for three days of golf, mountain biking and bbq, for Mike's bachelor party. Though I insisted he go, as again this takes nothing from us unless I let it, I knew being a single parent was going to be exhausting!
Despite the pity-party-for-one earlier in the week, as the weekend arrived I started to gain back some perspective, helped in large part by a casual girls night on the back patio with plenty of wine. I only have three treatments and five weeks left, with a long weekend in Napa sandwiched in on a good week to look forward to. And for all the poison being poured into it, my body is still hanging tough! Even as side effects worsen I know that I've metabolized the drugs much better than most, and as a result, I've experienced fewer and less severe side effects than most. I need to be proud of and kind to my body, despite it's wobbly bits and missing eyelashes, as this vessel is carrying me through rougher waters than anyone could have predicted, and we haven't been swamped yet!
So, needless to the say, the fifth treatment arrived anyway, and it was, as the doctor predicted, worse. The side effects I do have like nausea and nueropathy are a little more extreme and lasting a little longer with each treatment. Plus, a few new side effects have started to pop up. I've noticed a little more hair on the bathroom floor when I'm done with the blowdryer, but luckily given the amount of hair I have, even my hairdresser of eight years can't tell the difference. I do however, seem to be missing most of my lower lid eyelashes suddenly. And I've started to get bloody noses, as the chemo can effect the membranes throughout your body. Super.
So all of last week I felt pretty crummy. And then Steve went off to the mountains for three days of golf, mountain biking and bbq, for Mike's bachelor party. Though I insisted he go, as again this takes nothing from us unless I let it, I knew being a single parent was going to be exhausting!
Despite the pity-party-for-one earlier in the week, as the weekend arrived I started to gain back some perspective, helped in large part by a casual girls night on the back patio with plenty of wine. I only have three treatments and five weeks left, with a long weekend in Napa sandwiched in on a good week to look forward to. And for all the poison being poured into it, my body is still hanging tough! Even as side effects worsen I know that I've metabolized the drugs much better than most, and as a result, I've experienced fewer and less severe side effects than most. I need to be proud of and kind to my body, despite it's wobbly bits and missing eyelashes, as this vessel is carrying me through rougher waters than anyone could have predicted, and we haven't been swamped yet!
Thursday, August 5, 2010
NY State of Mind
When I moved to Colorado (has it really been 13 years!?) I vowed that I would never skip an important family celebration because of geography. Add to that my commitment to not just surviving cancer but conquering cancer - the difference, I believe, being that I will not let this take anything more away from me than is absolutely necessary. So, I may not miss that six inches of colon, but I absolutely would not miss my brother's 30th birthday weekend.
It was a very quick trip, a total of about 72 hours on the Island, but just what we needed.
A little family time at Jones Beach Friday. Hot dogs, cold beer, feet in the sand, waves rolling in, watching Van and Keira try to figure out this new substance under foot. And if it wasn't already perfect enough, after the playground and ice cream at Friendlies, there was a Motley Crue cover band at the little ampitheatre along the boardwalk. I'm on my way, I'm on my waaaa-aaay, home sweet home...
Saturday was Stephen's big day. A bus full of family and pals spent the day touring vineyards and a vodka distillery, sharing our favorite Stephen tales along the way. From what I can remember, we were all good and boozy by the time the bus dropped off us at the 'rents place. Now, at 30, Stephen's friends are only really just getting into the married with kids phase, and so across the group they seem to be doing a pretty impressive job of keeping the early 20s lifestyle going. As would be expected of any good Metz bash back in the day, there was a lot of tossing of bodies into the pool, Matty spent most of the late night naked, and there was the requisite beer chugging contest - the winner of which was, in a former life, the 1998 Ward Melville chugging champ, but is now by day a respectable high school math teacher. At 4 am, I could still hear the last of the bunch giggling out on the deck. I wondered how they have the energy and when Steve and I grew so old, but at 2 pm the next day, when several of them were still asleep upstairs, I was reminded that they have no children...
Sunday, the entire DeKoskie clan made the long trek down from K-town, along with more local family and friends. Pool time for the kids, bbq, good conversation and lots of hugs and photo ops. Is it me or was Donovan the only child that spent most of the day clad in a diaper or altogether naked?
By Sunday night I was torched, but it was the kind of complete, deep and happy exhaustion one gets after a vacation full of laughs and love. Thanks to all who planned, traveled, cooked and otherwise contributed to make the weekend as spectacular as it was.
It was a very quick trip, a total of about 72 hours on the Island, but just what we needed.
A little family time at Jones Beach Friday. Hot dogs, cold beer, feet in the sand, waves rolling in, watching Van and Keira try to figure out this new substance under foot. And if it wasn't already perfect enough, after the playground and ice cream at Friendlies, there was a Motley Crue cover band at the little ampitheatre along the boardwalk. I'm on my way, I'm on my waaaa-aaay, home sweet home...
Saturday was Stephen's big day. A bus full of family and pals spent the day touring vineyards and a vodka distillery, sharing our favorite Stephen tales along the way. From what I can remember, we were all good and boozy by the time the bus dropped off us at the 'rents place. Now, at 30, Stephen's friends are only really just getting into the married with kids phase, and so across the group they seem to be doing a pretty impressive job of keeping the early 20s lifestyle going. As would be expected of any good Metz bash back in the day, there was a lot of tossing of bodies into the pool, Matty spent most of the late night naked, and there was the requisite beer chugging contest - the winner of which was, in a former life, the 1998 Ward Melville chugging champ, but is now by day a respectable high school math teacher. At 4 am, I could still hear the last of the bunch giggling out on the deck. I wondered how they have the energy and when Steve and I grew so old, but at 2 pm the next day, when several of them were still asleep upstairs, I was reminded that they have no children...
Sunday, the entire DeKoskie clan made the long trek down from K-town, along with more local family and friends. Pool time for the kids, bbq, good conversation and lots of hugs and photo ops. Is it me or was Donovan the only child that spent most of the day clad in a diaper or altogether naked?
By Sunday night I was torched, but it was the kind of complete, deep and happy exhaustion one gets after a vacation full of laughs and love. Thanks to all who planned, traveled, cooked and otherwise contributed to make the weekend as spectacular as it was.
Tuesday, July 27, 2010
Girls Gone Wild
This past weekend was yet another celebratory event in the YOJ (Year of Jen), as she prepares for her upcoming nuptials in September. An entourage of nine bright and beautiful women headed up to Beaver Creek for a lovely mountain getaway - an afternoon at the spa, dinner and dancing in one of Vail's finer (or only) clubs, and for the first time in awhile for me at least, lots upon lots of champagne.
So, just a few observations from the weekend...
- Given the attention from an entire soccer team and a large bachelor party (most of whom started out conversations with something like 'We're married with kids and not trying to pick you up, but you all seem like fun...), despite being in our mid 30s and almost all having children (some as recently as June), we are still cute, ladies. And it is validation that my personal approach is working, that being that as long as you can possibly avoid it you should never look like you have cancer.
- Occasionally pulling the cancer card is OK - like when it gets you the hot stones add-on for free during your massage.
- Has anyone tried a Cherry Bomb? A shot of cherry vodka mixed with red bull...not only surprisingly tasty, but very helpful in avoiding a nap in the corner when you're going to be up until 3 am.
- Cocktail, cocktail, water, cocktail, water, cocktail, water...
- Jeni C., I love when you let your freak flag fly - and I'm pretty sure that was NOT the first time you worked a whip.
- I've been so lucky that the timing of this and other events has been just right, usually falling during an off-chemo week, allowing me to do more than just participate, but to really engage and enjoy my time with family and friends - and that is what feeds the unconquerable soul and keeps me motivated through each treatment.
- I reject the term 'victim' with my whole heart and mind.
- Though Steve is absolutely willing to let Van be the dirty kid and feed on nothing but cheese and chips, Van himself is thankfully getting smart enough to tell Dad when he needs a shower or a banana.
- Time away is wonderful, but so is coming home to shouts of 'It's my Mommy, my Mommy's home!'
Thursday, July 15, 2010
Three Times a Charm
Wrapped third round of chemo yesterday. 37.5% done. Five more to go. I actually feel better than I did on the first two rounds, largely because of my brilliant husband.
You see, though I don't have an addictive personality, I'm somewhat freaked out by the Ambien prescription my oncologist dished out at our first visit. No, I'm sleeping like a baby, I said back in January...now that I know I have a really fantastic excuse for being tired, I'm demanding a little less of myself and accepting an early bedtime before the sink is empty, the laundry is folded and the bills are all paid. Great, take it anyway, he said. It won't always be so easy.
Fast forward and he was right. The damn anti-nausea medication is a steroid that feeds insomnia, I can't sleep on my belly like I normally would so there's lots of tossing, and then there's the hot flashes. So the first two sessions I had very little sleep and the one-two punch of that and the declining red blood cell count meant that by Wednesday when the pump came off, I was just completely exhausted. Thursdays were worse - I wandered the halls at work with a dazed look and wan complexion, and most took pity on me, speaking slowly and in gentle tones so as not to startle me.
This Monday evening however, Steve suggested I give the Ambien a shot, retire early to the spare room where I could sleep diagonally, and crank the air conditioning. I love this man, people. I slept better than I have in months. So well in fact that I decided to rinse and repeat on Tuesday night. Three nights seemed a little much for a drug induced slumber, so Wednesday I skipped the Ambien and still slept soundly, the soothing hum of the A/C in the background. So, while I'm still riding out various other side effects, and there's a general feeling of fatigue, I'm sleeping, and that goes a long way.
You see, though I don't have an addictive personality, I'm somewhat freaked out by the Ambien prescription my oncologist dished out at our first visit. No, I'm sleeping like a baby, I said back in January...now that I know I have a really fantastic excuse for being tired, I'm demanding a little less of myself and accepting an early bedtime before the sink is empty, the laundry is folded and the bills are all paid. Great, take it anyway, he said. It won't always be so easy.
Fast forward and he was right. The damn anti-nausea medication is a steroid that feeds insomnia, I can't sleep on my belly like I normally would so there's lots of tossing, and then there's the hot flashes. So the first two sessions I had very little sleep and the one-two punch of that and the declining red blood cell count meant that by Wednesday when the pump came off, I was just completely exhausted. Thursdays were worse - I wandered the halls at work with a dazed look and wan complexion, and most took pity on me, speaking slowly and in gentle tones so as not to startle me.
This Monday evening however, Steve suggested I give the Ambien a shot, retire early to the spare room where I could sleep diagonally, and crank the air conditioning. I love this man, people. I slept better than I have in months. So well in fact that I decided to rinse and repeat on Tuesday night. Three nights seemed a little much for a drug induced slumber, so Wednesday I skipped the Ambien and still slept soundly, the soothing hum of the A/C in the background. So, while I'm still riding out various other side effects, and there's a general feeling of fatigue, I'm sleeping, and that goes a long way.
Thursday, July 1, 2010
Tree Skiing
Chemo started again Monday. A few hours in the big chair, back in the office by early afternoon. Poison on pump for 48 hours, and then freedom Wednesday morning. I must admit, though I had every intention of going straight to the office after pump removal, I had to go home and lay down for an hour. I'm realizing that I rev myself up to make it through treatment, but then I crash for about 48 hours after its all over and I just want to sleep...but wouldn't you know it, one of these damn drugs causes insomnia.
I've been told that my side effects will get worse with each of the next six treatments, but that if I haven't had a side effect yet, I likely won't get it going forward. Big sigh of relief. I can live with the headaches and how the new drug changes the taste of food. I keep asking Steve if this or that is bad before dishing it out to Van, and my vanilla yogurt is altogether tasteless. It makes everything feel much, much colder too, to the point of burning, so I'm now drinking lukewarm water. And just when Van has discovered the ice cream man.
I feel like I start to mend by Friday or Saturday though, and by middle of the following week, that full week off between treatments, I'm more like myself. I've been asked several times why I don't take it easy - working full time, entertaining, weekend long festivals, plans for Napa. Am I pushing myself too hard? Wouldn't I rather take some time off?
My best answer is tree skiing. The trick to tree skiing is not to look at the trees, because you'll surely hit them. You have to look between the trees, at those narrow spaces of light that, when navigated just right, offer you safe passage and one hell of a run. Yes, occassionally, there is the errant tree stump lurking beneath a deceiving pillow of fresh powder, waiting to toss you ass over teakettle - but you've got to know your terrain and anticipate variable conditions. And when you do need to sit a run out, there's usually a fireside bar serving cold beer on tap...
I've been told that my side effects will get worse with each of the next six treatments, but that if I haven't had a side effect yet, I likely won't get it going forward. Big sigh of relief. I can live with the headaches and how the new drug changes the taste of food. I keep asking Steve if this or that is bad before dishing it out to Van, and my vanilla yogurt is altogether tasteless. It makes everything feel much, much colder too, to the point of burning, so I'm now drinking lukewarm water. And just when Van has discovered the ice cream man.
I feel like I start to mend by Friday or Saturday though, and by middle of the following week, that full week off between treatments, I'm more like myself. I've been asked several times why I don't take it easy - working full time, entertaining, weekend long festivals, plans for Napa. Am I pushing myself too hard? Wouldn't I rather take some time off?
My best answer is tree skiing. The trick to tree skiing is not to look at the trees, because you'll surely hit them. You have to look between the trees, at those narrow spaces of light that, when navigated just right, offer you safe passage and one hell of a run. Yes, occassionally, there is the errant tree stump lurking beneath a deceiving pillow of fresh powder, waiting to toss you ass over teakettle - but you've got to know your terrain and anticipate variable conditions. And when you do need to sit a run out, there's usually a fireside bar serving cold beer on tap...
Monday, June 28, 2010
For My Good People
Each year we spend the last weekend of June at Red Rocks for a three day run of Widespread Panic shows. Panic Weekend is always an adventure, but this year was special for many reasons. For starters, they skipped last year, so for some of us this was the first show since an epic 2009 New Year's Eve weekend in a VIP box. This is Kerri's first big event post baby, and she needs it real bad. A recent count indicated that somewhere over the course of the weekend, pretty much all of us were going to hit our 50th show. Then of course, there is the pure and simple fact that we always do this, together, and this spate of normalcy has shown like a beacon for me the last few months.
There's a lot of build up to this boondoggle. We kick off with a mad scramble for tickets about 60 days prior. The day tickets go on sale, at least half a dozen of us, including out-of-state relatives recruited for their admirable computer skills and high speed connections, hover over our lap tops double checking battery power and making sure we've got the latest Mozilla upgrade downloaded. At 10 am sharp, furious keyboard action commences, along with much cursing of Ticketmaster and frantic shouting through cell phones - 'I've got six Saturday, Aunt George you've got Friday covered?! Jen, Mike and Alto have Sundays, Cuddie go for more Saturday, buy, buy, buy!" It's all over in about six minutes and assuming you've cornered the frozen orange juice market, you start parsing out spares to pals.
We roll deep, with an entourage 20 strong, so there's some real effort involved here. There are pre and post parties to organize, elaborate plans to smuggle in contraband, babysitters and designated drivers to hire, vehicle seating charts to maximize capacity. This all takes careful planning and attention to detail. You don't want realize a week out that you let someone tally the tickets from her hospital bed 5 hours after major surgery, clearly before the good drugs had worn off, and now you're short a few Saturday tickets! Craigslist...
By the time the Friday night show rolls around, the build up has reached fever pitch. Mike hears the birds outside his window whistling Panic tunes, and Steve has developed the kind of temporary ADHD that he usually reserves for big storms in the San Juan mountains. At least he has the day off - most of us are just useless, huddled in our offices trying, really trying to focus on that TPS report.
The plan is wheels up at 4:30 and much to everyone's credit, we pull away from the curb at 4:39. They won't come on until about 7:20 but we will steep ourselves in the parking lot scene for a few hours before showtime. Though we are older, and arguably wiser and more mature than when we started doing this 12 years ago, we pretend we aren’t.
So the weekend rolls by, drinks outnumbered only by laughs. We dance for hours, in the sunshine and the rain, under a rainbow and by the light of the full moon. My people come to play. And I feel the love, couldn't miss it really, because everyone is looking out for me. Jen's free with the hugs, Alty's on massage duty at intermission, Steve is telling all of us how much he loves us, Trent's got my name on a prayer flag as he leads Team Carter up Pike's Peak to raise dough for cancer, Cuddies have an extra bottle of water ready at every turn, Percell hands over his only rain poncho (securing a place in my heart for the second time, having been solely responsible for saving our wedding cake from disaster years ago.) Kurens, as usual the most prepared by far, is ready to chronicle the weekend in pictures.
Originally, Sunday was going to be a game time decision for me. When picking my chemo start date, I had a few options, and I chose wisely, making this past weekend (and a few other critical summer events) 'off weeks'. I knew the nine-day rest was going to be critical but might not be enough. I skip the late night post show goings on, hydrate well, and Steve is in charge of picking Van up so I can sleep in. Plus, 'they' say never miss a Sunday show, and I think they are right. The strategy pays off, I'm in and feeling good.
Brooke, eight months pregnant and fresh off two days of toddler duty, digs deep and makes it too, so we score her an extra ticket and a ride up the hill in a convertible with a handicapped sticker and an empty seat. Another widespread miracle. Danielle, four months pregnant, makes an early entrance to secure seats - row 22, Jimmy side, where you can feel the music in your chest. And then the band shows up. Never miss a Sunday show.
So, in summary...we got down to business and busted it big in that valley full of surprises, cleansing ourselves in the chilly water, driving that love tractor all weekend, climbing to safety out of this blight, every show worth a postcard home, seeing that last dance through like it was a disco...Ain't life grand? It makes sense to me.
There's a lot of build up to this boondoggle. We kick off with a mad scramble for tickets about 60 days prior. The day tickets go on sale, at least half a dozen of us, including out-of-state relatives recruited for their admirable computer skills and high speed connections, hover over our lap tops double checking battery power and making sure we've got the latest Mozilla upgrade downloaded. At 10 am sharp, furious keyboard action commences, along with much cursing of Ticketmaster and frantic shouting through cell phones - 'I've got six Saturday, Aunt George you've got Friday covered?! Jen, Mike and Alto have Sundays, Cuddie go for more Saturday, buy, buy, buy!" It's all over in about six minutes and assuming you've cornered the frozen orange juice market, you start parsing out spares to pals.
We roll deep, with an entourage 20 strong, so there's some real effort involved here. There are pre and post parties to organize, elaborate plans to smuggle in contraband, babysitters and designated drivers to hire, vehicle seating charts to maximize capacity. This all takes careful planning and attention to detail. You don't want realize a week out that you let someone tally the tickets from her hospital bed 5 hours after major surgery, clearly before the good drugs had worn off, and now you're short a few Saturday tickets! Craigslist...
By the time the Friday night show rolls around, the build up has reached fever pitch. Mike hears the birds outside his window whistling Panic tunes, and Steve has developed the kind of temporary ADHD that he usually reserves for big storms in the San Juan mountains. At least he has the day off - most of us are just useless, huddled in our offices trying, really trying to focus on that TPS report.
The plan is wheels up at 4:30 and much to everyone's credit, we pull away from the curb at 4:39. They won't come on until about 7:20 but we will steep ourselves in the parking lot scene for a few hours before showtime. Though we are older, and arguably wiser and more mature than when we started doing this 12 years ago, we pretend we aren’t.
So the weekend rolls by, drinks outnumbered only by laughs. We dance for hours, in the sunshine and the rain, under a rainbow and by the light of the full moon. My people come to play. And I feel the love, couldn't miss it really, because everyone is looking out for me. Jen's free with the hugs, Alty's on massage duty at intermission, Steve is telling all of us how much he loves us, Trent's got my name on a prayer flag as he leads Team Carter up Pike's Peak to raise dough for cancer, Cuddies have an extra bottle of water ready at every turn, Percell hands over his only rain poncho (securing a place in my heart for the second time, having been solely responsible for saving our wedding cake from disaster years ago.) Kurens, as usual the most prepared by far, is ready to chronicle the weekend in pictures.
Originally, Sunday was going to be a game time decision for me. When picking my chemo start date, I had a few options, and I chose wisely, making this past weekend (and a few other critical summer events) 'off weeks'. I knew the nine-day rest was going to be critical but might not be enough. I skip the late night post show goings on, hydrate well, and Steve is in charge of picking Van up so I can sleep in. Plus, 'they' say never miss a Sunday show, and I think they are right. The strategy pays off, I'm in and feeling good.
Brooke, eight months pregnant and fresh off two days of toddler duty, digs deep and makes it too, so we score her an extra ticket and a ride up the hill in a convertible with a handicapped sticker and an empty seat. Another widespread miracle. Danielle, four months pregnant, makes an early entrance to secure seats - row 22, Jimmy side, where you can feel the music in your chest. And then the band shows up. Never miss a Sunday show.
So, in summary...we got down to business and busted it big in that valley full of surprises, cleansing ourselves in the chilly water, driving that love tractor all weekend, climbing to safety out of this blight, every show worth a postcard home, seeing that last dance through like it was a disco...Ain't life grand? It makes sense to me.
Thursday, June 24, 2010
Run Your Ass Off
This past weekend Mom led the hometown posse through the Relay for Life, a fundraising event for the American Cancer Society. The 24-hour plan was squashed due to lack of budget for full time security, but this is just as well - neither Mom or my very pregnant SIL, Kerry, are really prepared to sleep on the ground.
So, throughout the evening family and friends walked and ran laps around the quarter mile track at my high school. And they did it in style; Hawaiian shirts, flower leis, baked goods, lots of laughs, and though I cannot confirm as jobs may be at stake, I heard rumors of vodka smuggled in water bottles. Sounds a lot like a Jimmy Buffet show actually, but with one major difference - they raised over $6K...donations and solicitations from team members, pennies from the kids at school, a 60 lb. jar of PTA change worth more than $900. A pretty solid grass roots effort if you ask me.
The fundraising aside, I think the gathering was important in and of itself. I'm certainly not in this alone, and my village needs a village to help it cope and heal, too. Once again, I find myself awed and inspired by the support and love offered up to us...
So, throughout the evening family and friends walked and ran laps around the quarter mile track at my high school. And they did it in style; Hawaiian shirts, flower leis, baked goods, lots of laughs, and though I cannot confirm as jobs may be at stake, I heard rumors of vodka smuggled in water bottles. Sounds a lot like a Jimmy Buffet show actually, but with one major difference - they raised over $6K...donations and solicitations from team members, pennies from the kids at school, a 60 lb. jar of PTA change worth more than $900. A pretty solid grass roots effort if you ask me.
The fundraising aside, I think the gathering was important in and of itself. I'm certainly not in this alone, and my village needs a village to help it cope and heal, too. Once again, I find myself awed and inspired by the support and love offered up to us...
Thursday, June 17, 2010
One Down!
I wrapped up the first of eight treatments yesterday morning, and without intending to tempt fate, it went pretty well. I'm exhausted, as those red blood cells the chemo attacks really do drive energy levels, but hope that will pass with plenty of rest throughout the weekend. I had a few nasty headaches, am a touch dehydrated, and have some general feelings of weirdness, but for the most part, I'm pleasantly surprised by my body's response.
Thanks as always for your encouragement and support!
Thanks as always for your encouragement and support!
Monday, June 14, 2010
It's gonna be a long hard drag, but we'll make it... ~Janis Joplin
This round of chemo is going to be a very different experience.
After a quick visit with my oncologist, I went to the infusion center. This is really a wonderful facility. The nurses and support staff are friendly, knowledgeable and efficient - all have years of experience as an infusion nurse, and several have overcome their own battles with cancer. The amenities are extensive and intended to make you feel at home as much as possible; comfy recliners, soft pillows and blankets straight out of the dryer, personal DVD players with a slew of movie options, a massage therapist, snacks and beverages. You start to think you could get used to this, that this isn't a bad way to spend a morning. Then they sling your chemo cocktail with a large orange 'BIOHAZARD' sticker up onto your rack, and suddenly you remember you're not here for the free sandwiches.
It's a bit like a visit to the twilight zone. Cuddled up in a warm blanket, taking in all the gorgeous scenery in Under the Tuscan Sun, I was thinking someone should offer me a glass of wine. But then a nasty headache sets in from the anti-nausea IV, and I can feel an uneasy warmth churning in my belly. The girl two seats over is getting a neck massage and I can see the therapist trying to inconspicuously dispose of the handfuls of hair that she's shedding, while a doctor makes a rare, interloper's visit to the nurse managed center to discuss a possible blood transfusion with the older women across the room. Despite all the lovely amenities, we're all here for an oxymoron, a poison that will strip us down to the most raw and vulnerable versions of ourselves, to hopefully saves our lives.
While my prior visits were short at the infusion center, this time around I'm receiving some portion of treatment 'in the big chair', with the remainder via the take-home infusion pump. Instead of 45 minutes, there's now a four hour layover - there's the usual accessing and flushing of the port, and blood tests to make sure I'm treatable. Then they load me up on various intravenous pre-meds for clotting and nausea (half hour), before delivering the full dose of the new drug, Oxaliplatin (2 hours). Finally, they hook me up to the take home pump and send me on my way until Wednesday morning when it comes off.
In each of the first two rounds last February and March, I received 100 ml of 5-FU over a fourteen day period. This time, for each of these eight rounds I'll receive 86 ml of the same drug, but in just two days. Fast and furious. Sure, I get a 12 day break until it starts again, but the more of these eight sessions I complete, the longer the recovery in between will take.
A mere 10 hours in now though, things are still OK and certainly manageable. I was warned of the headaches and insomnia from the anti nausea drugs, and am prepared with Tylenol and ambien. I quickly discovered that straight salt offers the same burning sensation in the mouth and throat that carbonated beverages do, so I'll be avoiding sodas and pretzels for the next three months. And, I've already left an oven mitt near the fridge, to avoid nueropathy and the intense, painful reaction to cold that it creates in the hands, fingers and feet.
We'll see what the next few days and sessions brings, but whatever it is, I hope to take it in stride.
After a quick visit with my oncologist, I went to the infusion center. This is really a wonderful facility. The nurses and support staff are friendly, knowledgeable and efficient - all have years of experience as an infusion nurse, and several have overcome their own battles with cancer. The amenities are extensive and intended to make you feel at home as much as possible; comfy recliners, soft pillows and blankets straight out of the dryer, personal DVD players with a slew of movie options, a massage therapist, snacks and beverages. You start to think you could get used to this, that this isn't a bad way to spend a morning. Then they sling your chemo cocktail with a large orange 'BIOHAZARD' sticker up onto your rack, and suddenly you remember you're not here for the free sandwiches.
It's a bit like a visit to the twilight zone. Cuddled up in a warm blanket, taking in all the gorgeous scenery in Under the Tuscan Sun, I was thinking someone should offer me a glass of wine. But then a nasty headache sets in from the anti-nausea IV, and I can feel an uneasy warmth churning in my belly. The girl two seats over is getting a neck massage and I can see the therapist trying to inconspicuously dispose of the handfuls of hair that she's shedding, while a doctor makes a rare, interloper's visit to the nurse managed center to discuss a possible blood transfusion with the older women across the room. Despite all the lovely amenities, we're all here for an oxymoron, a poison that will strip us down to the most raw and vulnerable versions of ourselves, to hopefully saves our lives.
While my prior visits were short at the infusion center, this time around I'm receiving some portion of treatment 'in the big chair', with the remainder via the take-home infusion pump. Instead of 45 minutes, there's now a four hour layover - there's the usual accessing and flushing of the port, and blood tests to make sure I'm treatable. Then they load me up on various intravenous pre-meds for clotting and nausea (half hour), before delivering the full dose of the new drug, Oxaliplatin (2 hours). Finally, they hook me up to the take home pump and send me on my way until Wednesday morning when it comes off.
In each of the first two rounds last February and March, I received 100 ml of 5-FU over a fourteen day period. This time, for each of these eight rounds I'll receive 86 ml of the same drug, but in just two days. Fast and furious. Sure, I get a 12 day break until it starts again, but the more of these eight sessions I complete, the longer the recovery in between will take.
A mere 10 hours in now though, things are still OK and certainly manageable. I was warned of the headaches and insomnia from the anti nausea drugs, and am prepared with Tylenol and ambien. I quickly discovered that straight salt offers the same burning sensation in the mouth and throat that carbonated beverages do, so I'll be avoiding sodas and pretzels for the next three months. And, I've already left an oven mitt near the fridge, to avoid nueropathy and the intense, painful reaction to cold that it creates in the hands, fingers and feet.
We'll see what the next few days and sessions brings, but whatever it is, I hope to take it in stride.
Sunday, June 13, 2010
Rocky Mountain High
This weekend, we went up to the mountains with friends. Though the weather was variable and our picnic at the lake was rained out, the weekend as a whole was just what I needed to clear my head; a nap with Van while it drizzled outside, a few hours at the spa with the girls, a fabulous dinner courtesy of the guys, wine and laughter around the fire pit long after the kids were asleep. It was soothing, as time at altitude always is for me. Despite the physical and emotional trials the last few weeks, I'm feeling calm and ready for tomorrow.
Tuesday, June 8, 2010
Happy Thoughts
I haven't been feeling myself lately. I went back to work last week. I think it was time, as I was feeling well and starting to climb the walls a bit after four weeks on leave for recovery. The fastest way to get through to October is to keep myself busy, and they are being very gentle with me at the office, for which I am very grateful.
Nevertheless, I'm exhausted. Not sleeping well, emotionally stressed, physically drained...and all of this leads to annoying little kinks here or there. I feel like my body is betraying me a bit and I'm not used to this. We've always had an understanding. I offer up regular and vigorous exercise, copious amounts of fruits and veggies, a touch of chocolate, moisturizer and sunscreen, and the occassional spa treatment. In exchange, my body is strong and capable, it tolerates extremes, including the occassional binge party weekend or grueling hike above tree line in ski boots, and it never fails me. Now however, I know that this next and final phase of chemo is critical, but I'm worried that I'm not going into it as strong as I did the first two phases of treatment.
So, I'm doing what I can - trying to get to bed earlier, reserve my energy during this last week before chemo begins again, focus on the positive, center myself.
All that said, it seemed like a good time to count the many things that have made me happy lately...
Nevertheless, I'm exhausted. Not sleeping well, emotionally stressed, physically drained...and all of this leads to annoying little kinks here or there. I feel like my body is betraying me a bit and I'm not used to this. We've always had an understanding. I offer up regular and vigorous exercise, copious amounts of fruits and veggies, a touch of chocolate, moisturizer and sunscreen, and the occassional spa treatment. In exchange, my body is strong and capable, it tolerates extremes, including the occassional binge party weekend or grueling hike above tree line in ski boots, and it never fails me. Now however, I know that this next and final phase of chemo is critical, but I'm worried that I'm not going into it as strong as I did the first two phases of treatment.
So, I'm doing what I can - trying to get to bed earlier, reserve my energy during this last week before chemo begins again, focus on the positive, center myself.
All that said, it seemed like a good time to count the many things that have made me happy lately...
- The roses are in full bloom in the front yard, and the backyard is perfumed with honeysuckle and bee's balm. A family of humming birds have taken up residence in the yard and appear each night at twilight to feed - if you sit still and quiet at the edge of the flower bed, you can get a good look and they'll occassionally buzz up to inspect you.
- The power went out last night due to an explosion at the local substation. Though Steve is a bit like a caged animal without TV or air conditioning (pacing, growling, swatting at imaginary bugs) it was a lovely evening - we three sat in the backyard eating melting ice cream for dinner, searching for roly-poly bugs and blowing bubbles. Then we read bedtime stories by flashlight. Maybe we'll pretend the power is out more often.
- Donovan had many firsts this last week. His first ice cream headache, his first time running through the sprinkler, and his first really successful trip to the potty - each priceless.
- When I started back at work last week, my team welcomed me with a new photo to hang in my office - a framed version of the view from Greg's bench, which I talked about in an earlier post. Though I generally believe there is no crying in business, I couldn't help tear up. The thought and effort that went into the gift was tremendous.
- When wandering around the yard or on his way upstairs, Van will often look up, reach out and say 'Hold my hand, Mama.' So powerful...
- My husband tells me each day that he loves me and thinks I'm beautiful. He is amazing.
- We saw Tom Petty and Joe Cocker last week at Red Rocks. An evening of classic tunes with good friends in a gorgeous outdoor setting is always good for the soul.
Monday, May 24, 2010
Karma
When I left the hospital they gave me a page of written discharge directions which instructed me to 'ambulate', so I've been making an effort to get out and walk regularly. I started with jaunts around the block, Van pushing his bubble lawnmower along beside me. I've been building up to longer, albeit slow walks a few miles across the park. These are usually followed by a nap, but I digress.
On the east side of the park, just below the Museum of Natural History, there's a fountain - around the fountain are a series of benches, one of which is dedicated to our friend Greg, who succumbed to colon cancer in February of 2009, after a truly valiant battle.
I've been finding myself drawn to the bench lately. About a mile and half from the house, it provides a perfect pit stop. And it boasts arguably the most stunning view in all of Denver. It overlooks the lake and pavilion on the west side of the park, backed up by the downtown skyline and beyond that, the Rocky Mountains, the peaks still frosted with the last of Spring snow. In the summertime, the fountain alongside will be surrounded by picnicking families, giggling children dashing through the water spouts.
Sitting around in the sunshine, there's a lot to think about. On my last visit, I mused a bit about karma. Greg's diagnosis had derailed what was a faint interest/belief in the idea. I certainly appreciate the Hindu concept of an immortal soul's journey to a higher spiritual existence, but I really didn't like the idea that his cancer in this lifetime was cultivated through some past life action. Oddly, I've been rethinking the concept lately and it doesn't bother me as much in the context of my own diagnosis. I'm actually OK with the idea that I might be paying off some grand debt to the universe. I feel like I'm generating good karma in this life, and if conquering cancer now makes me square for any past life transgressions, I think I should be solid as I approach the next spiritual plane. In the meantime, I'll do my best not to screw up this power position as I enjoy the next 50+ years of this lifetime...
On the east side of the park, just below the Museum of Natural History, there's a fountain - around the fountain are a series of benches, one of which is dedicated to our friend Greg, who succumbed to colon cancer in February of 2009, after a truly valiant battle.
I've been finding myself drawn to the bench lately. About a mile and half from the house, it provides a perfect pit stop. And it boasts arguably the most stunning view in all of Denver. It overlooks the lake and pavilion on the west side of the park, backed up by the downtown skyline and beyond that, the Rocky Mountains, the peaks still frosted with the last of Spring snow. In the summertime, the fountain alongside will be surrounded by picnicking families, giggling children dashing through the water spouts.
Sitting around in the sunshine, there's a lot to think about. On my last visit, I mused a bit about karma. Greg's diagnosis had derailed what was a faint interest/belief in the idea. I certainly appreciate the Hindu concept of an immortal soul's journey to a higher spiritual existence, but I really didn't like the idea that his cancer in this lifetime was cultivated through some past life action. Oddly, I've been rethinking the concept lately and it doesn't bother me as much in the context of my own diagnosis. I'm actually OK with the idea that I might be paying off some grand debt to the universe. I feel like I'm generating good karma in this life, and if conquering cancer now makes me square for any past life transgressions, I think I should be solid as I approach the next spiritual plane. In the meantime, I'll do my best not to screw up this power position as I enjoy the next 50+ years of this lifetime...
Wednesday, May 19, 2010
Post Surgery Report
Surgery went very well - my doctor called it textbook perfect. My insides apparently look great post radiation, with considerably more healing and less scarring than expected. While the pathology report indicated nothing left of the tumor but a mere pin head sized spot, unfortunately there were also four positive lymph nodes so the cancer remains stage III. This stung. Although I understood that there would be no change in the post surgery chemo regimen regardless, knowing that the tumor had all but disappeared entirely I had convinced myself there would be downstaging - and all along we had thought there had been only one or two suspicious lymph nodes, so I hadn't prepared myself for the higher count. Ultimately though, its all gone and that's what counts.
Recovery from surgery itself hasn't been difficult. I was up and around the next morning, out of the hospital a day early and ditched the Vicodin within 36 hours of being home. Learning to live with my new Frankenstein abdomen however has been very difficult.
Because radiated tissue typically does not heal as quickly as normal tissue, the standard treatment in a case like mine is to create an ileostomy - similar to a colostomy but further up in the intestine, this bypasses the surgical site and allows it more time to heal. This is short term and will be reversed in about six months after chemo is over, but that hasn't made it any easier. Its changed what and how I eat, what I can wear, how I sleep. But this is all physical and easier to move past than the mental bruising. Learning to care for and live with this has raised more stress and anxiety in me than I have ever experienced - frankly more than I thought I was capable of.
Early on, outlining my course of treatment to Kristy, she quickly put it in perspective - 'Ok, so you'll poop into a bag for a few months, big deal - you'll watch Van grow up, graduate college, get married.' I think about this every day - I can live with this, to live for that.
Recovery from surgery itself hasn't been difficult. I was up and around the next morning, out of the hospital a day early and ditched the Vicodin within 36 hours of being home. Learning to live with my new Frankenstein abdomen however has been very difficult.
Because radiated tissue typically does not heal as quickly as normal tissue, the standard treatment in a case like mine is to create an ileostomy - similar to a colostomy but further up in the intestine, this bypasses the surgical site and allows it more time to heal. This is short term and will be reversed in about six months after chemo is over, but that hasn't made it any easier. Its changed what and how I eat, what I can wear, how I sleep. But this is all physical and easier to move past than the mental bruising. Learning to care for and live with this has raised more stress and anxiety in me than I have ever experienced - frankly more than I thought I was capable of.
Early on, outlining my course of treatment to Kristy, she quickly put it in perspective - 'Ok, so you'll poop into a bag for a few months, big deal - you'll watch Van grow up, graduate college, get married.' I think about this every day - I can live with this, to live for that.
Monday, April 26, 2010
Age is Not Just a Number
Van turns two tomorrow, and we had a party for him this weekend. I learned my lesson after last year, when I spent hours and hours making star-shaped melon skewers, potato salad, and blue cupcakes for nearly 40 people, and was then exhausted before the party even started - this year, another year wiser, I opted for a keg, pizza and bakery cake.
I am so very grateful that I was able to celebrate his birthday in these last few weeks pre-surgery. I know that next Monday is the start to several very challenging months for Steve, Van and me, and so this has been the perfect time for us to feast and be merry. Though hectic, it's been so much fun. Teaching him to sing happy birthday, helping him unwrap presents (each one gets a 'WHOAAA', even if it's socks), watching him load raisins from the new bulldozer into the dump truck while wearing his little hard hat...
Of course, there's a new level of emotion tied to birthdays for me too, because every year passed for all of us seems that much more precious. I used to say that age was a state of mind and the number didn't matter. I had started to joke the last year or two that I was going to pick an age and just stick with it - 31 sounded pretty good to me. I do still believe that age is a state of mind, because a lot depends on what you do with all of those years of experience - but the digits do matter. I will never again lie about my age. I will do my best to stay young at heart, but I will embrace the number, too. I will share it proudly, boast of it even. And someday when blowing out the candles on my 80th birthday cake, I will insist that there actually be 81 candles (one for good luck!) and it will be a beautiful sight.
I am so very grateful that I was able to celebrate his birthday in these last few weeks pre-surgery. I know that next Monday is the start to several very challenging months for Steve, Van and me, and so this has been the perfect time for us to feast and be merry. Though hectic, it's been so much fun. Teaching him to sing happy birthday, helping him unwrap presents (each one gets a 'WHOAAA', even if it's socks), watching him load raisins from the new bulldozer into the dump truck while wearing his little hard hat...
Of course, there's a new level of emotion tied to birthdays for me too, because every year passed for all of us seems that much more precious. I used to say that age was a state of mind and the number didn't matter. I had started to joke the last year or two that I was going to pick an age and just stick with it - 31 sounded pretty good to me. I do still believe that age is a state of mind, because a lot depends on what you do with all of those years of experience - but the digits do matter. I will never again lie about my age. I will do my best to stay young at heart, but I will embrace the number, too. I will share it proudly, boast of it even. And someday when blowing out the candles on my 80th birthday cake, I will insist that there actually be 81 candles (one for good luck!) and it will be a beautiful sight.
Monday, April 12, 2010
Shrinking...Violets
During radiation treatment, I would lay on the table and try to find something positive to wrap my head around. Often I thought of the tumor dying and dissolving, and yes, sometimes I even imagined it squealing 'I'm melting, I'm melting...' Wicked Witch style as it went. I tried to picture healthy tissue springing forth and blooming in its place, like a beautiful garden. As far as actual probability, I was told that the tumor will go away only about 20% of the time, with another 20% experiencing no measurable change. The majority, about 60% of people, fall somewhere in the middle.
I visited with my surgeon end of last week, and although formal downstaging cannot be done until after surgery and pathology, the tumor is gone! This does not mean I'm cancer-free (yet), and both surgery and post-operative chemo are still necessary because treatment is based on the initial stage III diagnosis - but this simplifies surgery a bit and long term survival rates are positively impacted by significant downstaging.
I'm proceeding with cautious optimism until we do have pathology, but this is a great boost as we prepare for surgery on May 3rd!
I visited with my surgeon end of last week, and although formal downstaging cannot be done until after surgery and pathology, the tumor is gone! This does not mean I'm cancer-free (yet), and both surgery and post-operative chemo are still necessary because treatment is based on the initial stage III diagnosis - but this simplifies surgery a bit and long term survival rates are positively impacted by significant downstaging.
I'm proceeding with cautious optimism until we do have pathology, but this is a great boost as we prepare for surgery on May 3rd!
Monday, April 5, 2010
The Breath of Spring
I must admit, updating when everything seems so status quo seems a bit odd, but this period of normalcy is so refreshing.
Keith, Kerry and Keira have come to visit for the week, and though I think we're all suprised that two small children can run four adults so ragged, it has been pure joy. Being only two months apart Van and Keira make perfect playpals - even when squabbling over whose turn it is with whatever the toy of the hour is, they're hilarious to watch. And when they're done fighting and they hug and kiss, it is precious.
They couldn't have come at a better time. I'm still very tired but all the burns and other discomforts are over with, and I feel mostly like I did before this all began - minus all the symptoms that suggested a problem in the first place. I've entertained guests on the back patio, cooked a few delicious meals, slid down the big slide at the park over and over, dyed eggs, and had an Easter morning egg hunt for half a dozen munchkins!
Surgery is scheduled six to eight weeks after radiation treatment is over, as it gives the radiation time to continue to work, but precedes any significant build up of scar tissue. My surgeon has tentatively scheduled surgery for May 3, although I'll see him in the coming week to firm that up. Though I dread they may tell me that Van will not be permitted to visit during my six day hospital stay, the May date will at least allow me to celebrate his second birthday at the end of the month! And the sooner surgery is behind me, the sooner the third phase of chemo can begin and the sooner we can all put this behind us and go on counting birthdays!
Keith, Kerry and Keira have come to visit for the week, and though I think we're all suprised that two small children can run four adults so ragged, it has been pure joy. Being only two months apart Van and Keira make perfect playpals - even when squabbling over whose turn it is with whatever the toy of the hour is, they're hilarious to watch. And when they're done fighting and they hug and kiss, it is precious.
They couldn't have come at a better time. I'm still very tired but all the burns and other discomforts are over with, and I feel mostly like I did before this all began - minus all the symptoms that suggested a problem in the first place. I've entertained guests on the back patio, cooked a few delicious meals, slid down the big slide at the park over and over, dyed eggs, and had an Easter morning egg hunt for half a dozen munchkins!
Surgery is scheduled six to eight weeks after radiation treatment is over, as it gives the radiation time to continue to work, but precedes any significant build up of scar tissue. My surgeon has tentatively scheduled surgery for May 3, although I'll see him in the coming week to firm that up. Though I dread they may tell me that Van will not be permitted to visit during my six day hospital stay, the May date will at least allow me to celebrate his second birthday at the end of the month! And the sooner surgery is behind me, the sooner the third phase of chemo can begin and the sooner we can all put this behind us and go on counting birthdays!
Thursday, March 25, 2010
Today's Blog is Brought to You by the Number 6...
Phase I of treatment is a wrap - radiation finished up last Wednesday, and the chemo pump came off Monday. I wish I could tell you that the last few days treatment free have been blissful, but alas, no. As I had been told all along, despite the relief of being at the finish line, physically, the end is the worst. But, as I've also learned, treatment pushes you until you are teetering on the edge, and than its over and you recover - quickly.
Donovan has been learning to count - goldfish, stairs, the number of tires on the school buses we pass on our way to work. So lately I've been finding myself counting things, too.
Over 6 weeks of treatment I've had:
Donovan has been learning to count - goldfish, stairs, the number of tires on the school buses we pass on our way to work. So lately I've been finding myself counting things, too.
Over 6 weeks of treatment I've had:
- 28 radiation treatments, with 3 shots of gamma rays each time
- 200 ml of Fluoroucil (chemo), pumped in slowly in tiny batches every 10 minutes, 6 times an hour, 144 times a day, for 28 days
- 6k ml of leucovorin, a reduced folic acid used in conjunction with the chemo to enhance effectiveness
- 9 prescriptions and 6 over the counter medications to address side effects
- 16 doctor appointments
- 6 blood tests
- 1 abdominal ultrasound
- 1 grey hair
Of course, there are also all the things I lost count of - the meals, cards and emails, and other thoughtful gestures from family and friends, the kisses and hugs from Van and Steve, the simple pleasures because I was finally too tired to over-complicate things.
So, now I have 6 glorious weeks off before phase II. Surgery and recovery will undoubtedly be a new challenge, but for now, I can just relax, heal, get back to running and skiing, and continue to count all the simple pleasures.
Tuesday, March 9, 2010
Blood, Sweat and Tears
Early on a friend told me that I would find a little bit of good news in each visit, and he was right.
The chemo pump went back on yesterday after a two week break, and during our visit my doctor had plenty to share. First, my white and red blood cells, platelets and various other blood components have all stayed very stable - on the mid to very low side, but all still in the normal range. As chemotherapy drugs can't distinguish between healthy and evil cells it attacks them all, which naturally results in these various counts dropping. The ability to fight off infection and stop bleeding is pretty critical, so these complete blood counts (CBCs) are closely monitored each week. Beyond the normal range is the 'lower-than-normal-but-we'll-still-treat-you range', followed by the 'so-low-we-can't-chemo-you-up-this-week-and-don't-cut-yourself-shaving range'. I hope to avoid both.
More importantly, they shared the results of the genetic testing they had performed on my biopsy. They were looking for the five genetic mutations commonly associated with hereditary nonpolyposis colorectal cancer (HNPCC), which is a syndrome that puts people at higher risk for colorectal cancer. Some studies indicate that without screening as much as 80% of people with HNPCC will develop this cancer, compared to about 4% of the general population, and at a much earlier age.
I tested negative for each, meaning that mine is assumed to be just a sporadic cancer. Given the maze that cancer is, there are likely other hereditary genetic mutations that simply haven't been isolated yet, but I'm willing to take these results for what they are, which is good news. For me, while it doesn't rule out a recurrence, people without HNPCC tend to respond better to treatment and have slightly less risk of recurrence. Most importantly, though Van will still have to go for regular screening at an early age now that he has this dreaded family history, I did not pass any known genetic mutation on to him - and it is unlikely that my brothers carry them either.
I don't think I realized how heavily this was weighing on me until Dr. Conlin shared the news and I promptly broke down in tears. This is rare for me, and based on her pie-eyed, mad scramble for tissues, I know I surprised us both - but I imagine oncologists don't get to see happy tears as often as they would like, so I don't think she minded.
The chemo pump went back on yesterday after a two week break, and during our visit my doctor had plenty to share. First, my white and red blood cells, platelets and various other blood components have all stayed very stable - on the mid to very low side, but all still in the normal range. As chemotherapy drugs can't distinguish between healthy and evil cells it attacks them all, which naturally results in these various counts dropping. The ability to fight off infection and stop bleeding is pretty critical, so these complete blood counts (CBCs) are closely monitored each week. Beyond the normal range is the 'lower-than-normal-but-we'll-still-treat-you range', followed by the 'so-low-we-can't-chemo-you-up-this-week-and-don't-cut-yourself-shaving range'. I hope to avoid both.
More importantly, they shared the results of the genetic testing they had performed on my biopsy. They were looking for the five genetic mutations commonly associated with hereditary nonpolyposis colorectal cancer (HNPCC), which is a syndrome that puts people at higher risk for colorectal cancer. Some studies indicate that without screening as much as 80% of people with HNPCC will develop this cancer, compared to about 4% of the general population, and at a much earlier age.
I tested negative for each, meaning that mine is assumed to be just a sporadic cancer. Given the maze that cancer is, there are likely other hereditary genetic mutations that simply haven't been isolated yet, but I'm willing to take these results for what they are, which is good news. For me, while it doesn't rule out a recurrence, people without HNPCC tend to respond better to treatment and have slightly less risk of recurrence. Most importantly, though Van will still have to go for regular screening at an early age now that he has this dreaded family history, I did not pass any known genetic mutation on to him - and it is unlikely that my brothers carry them either.
I don't think I realized how heavily this was weighing on me until Dr. Conlin shared the news and I promptly broke down in tears. This is rare for me, and based on her pie-eyed, mad scramble for tissues, I know I surprised us both - but I imagine oncologists don't get to see happy tears as often as they would like, so I don't think she minded.
Monday, March 8, 2010
Age is Just a Number
Steve says I'm making him old before his time, but he did turn 40 last Thursday, so I don't think he can blame it all on me. This being such an important birthday, I had spent weeks worrying over how to make it special, especially given that when I was diagnosed he backed out of the birthday trip of a lifetime - a 10-day ski trip to Chamonix, France. Though I had objected, someone pointed out that I wouldn't think twice about doing the same for him, and this is true. Luckily, this birthday fell during my second week off chemo, and I felt great.
On Thursday, we had a special dinner at The Flagstaff House, up on the hill overlooking the lights of Boulder. From the amuse-bouche (the chef's bite size interpretation of a BLT), past the intermezzo course of grapefruit sorbet and through to the final sweet spoonfuls of maple panna cotta, this was a memorable meal. As this was our first night out just the two of us since this all started, it was even more delightful.
Mary Ellen, a very wise colleague, reminded me early in the week that I should spend some of my good days at home too, and she was right. Steve and I both took Friday off, and right after radiation Friday morning we trekked up to Frisco for the weekend. Much of our Denver family joined us on Friday night, so we were rolling deep. (To ensure that Steve stays hip as he ages, I picked him up some slang flashcards. FYI, 'rolling deep' means to travel with a big entourage.)
Saturday, Alty and Brooke watched Van so that Steve and I could ski with the gang, and it was just what I needed to clear my head - four inches fresh on a warm, blue bird day, plenty of fast turns, some time spent on the kiddie hill teaching sweet Riley how to snow plow, and as there is more to skiing than skiing, beers on the deck afterward. That night we all gathered under one roof to sing happy birthday and toast Steve for being young at heart. Throughout the evening, it was just so easy to take in the joy around us; there were friends both old and new, friends quite obviously falling in love, two couples planning weddings, two expecting, half a dozen giggling children with icing smeared across their faces, champagne corks popping and wave after wave of laughter. I don't think I could have imagined a more perfect way to re-energize and prepare for these next two weeks of treatment than this.
On Thursday, we had a special dinner at The Flagstaff House, up on the hill overlooking the lights of Boulder. From the amuse-bouche (the chef's bite size interpretation of a BLT), past the intermezzo course of grapefruit sorbet and through to the final sweet spoonfuls of maple panna cotta, this was a memorable meal. As this was our first night out just the two of us since this all started, it was even more delightful.
Mary Ellen, a very wise colleague, reminded me early in the week that I should spend some of my good days at home too, and she was right. Steve and I both took Friday off, and right after radiation Friday morning we trekked up to Frisco for the weekend. Much of our Denver family joined us on Friday night, so we were rolling deep. (To ensure that Steve stays hip as he ages, I picked him up some slang flashcards. FYI, 'rolling deep' means to travel with a big entourage.)
Saturday, Alty and Brooke watched Van so that Steve and I could ski with the gang, and it was just what I needed to clear my head - four inches fresh on a warm, blue bird day, plenty of fast turns, some time spent on the kiddie hill teaching sweet Riley how to snow plow, and as there is more to skiing than skiing, beers on the deck afterward. That night we all gathered under one roof to sing happy birthday and toast Steve for being young at heart. Throughout the evening, it was just so easy to take in the joy around us; there were friends both old and new, friends quite obviously falling in love, two couples planning weddings, two expecting, half a dozen giggling children with icing smeared across their faces, champagne corks popping and wave after wave of laughter. I don't think I could have imagined a more perfect way to re-energize and prepare for these next two weeks of treatment than this.
Saturday, February 27, 2010
Side Effects
There was a lot of healing this week. While there still isn't any firm answer as to root cause of the abdominal pain, the further I get from the chemo the better I feel. I'm certainly not 100%, and as I'm starting to see some impact from the radiation I think it will be awhile before I am, but there's marked progress. The pain is infrequent and much less severe now, so much so that I'm eating again (though I'm careful to limit myself to bland and easily digestable foods), and most of the other side effects are gone altogether. This morning, Steve went skiing, while I happily made Van breakfast and played hide and seek.
As I visit with my doctors, read up on the materials I've been given and provide friends and family updates, there's so much focus on the side effects. It makes me think about all of the positive side effects that don't get near as much attention...
So much anxiety, fear, courage, laughter, pain, relief, love, appreciation - it's quite the rollercoaster, this journey!
As I visit with my doctors, read up on the materials I've been given and provide friends and family updates, there's so much focus on the side effects. It makes me think about all of the positive side effects that don't get near as much attention...
- I'm learning that no matter how strong I thought I was, I'm even stronger.
- My family and friends have all stood up to help bear this burden, and I'm learning that each is even more creative, kind, generous and resourceful than I had already given them credit for.
- I'm figuring out how to ask for and receive help, hopefully with grace - Steve might argue the graceful part and I think Jen may have mentioned something about 'unrelenting bossiness', but I'm giving myself the benefit of the doubt here.
- I feel a new depth of love and respect for all of those supporting me through this - and for myself.
- I'm finding new ways to interact with Van that are just as enjoyable. Thanks for the suggestions, Kristy.
- I have to change fewer diapers and it doesn't look like I have to cook a meal until Thanksgiving.
- I have renewed friendships from high school and college that, purely due to geography and the usual complications of life, had been dormant the last several years - and not surprisingly, I'm finding as much joy, humor and comfort in those relationships as I did years ago.
- I threw away the Weight Watchers book and points calculator.
- I'm slowing down and really appreciating everything around me, especially the simple pleasures. Service with a smile AND fresh scones at the bank on a Saturday morning? What a great day!
So much anxiety, fear, courage, laughter, pain, relief, love, appreciation - it's quite the rollercoaster, this journey!
Tuesday, February 23, 2010
The Honeymoon is Over
The last few days have been very tough. Although the chemo pump came off it seems to have been just in time, as my body started to react. The nausea and fatigue really kicked in, as did an unexplainable and paralyzing sharp pain that would radiate out from my stomach through my abdomen. I can tell you it brings no comfort when your team of doctors scratch their heads and tell you they haven't seen this before. Perhaps you've given yourself an ulcer? Possible, I have been under a wee bit of stress lately. Gall stones, do you have any history of gall bladder problems. No, I don't even know where my gall bladder is. Heart burn, does it feel like heartburn? No, it feels like my stomach is eating itself. Hhhhmmm, keep taking Advil and let's keep our eye on it. &%$#@*&$@!!
With the better part of 36 hours sans chemo now I can feel myself healing though. The nausea has dissipated and the pain is now more a dull ache with only the occasional sharp pang reminding me not to get too comfortable.
As dark as this was physically, it was a challenge emotionally as well. Up until Friday night, I had largely been the same, albeit a bit more prone to naps. This weekend however I spent most of my time clenched into the fetal position, reminding myself that the end justifies the means and gritting my way through a little mantra cross stitched on the waiting room wall of the comprehensive cancer center, 'Every cell in my body is well'. At some point, I did abandon that in favor of 'Find a happy place, find a happy place.'
I would periodically croak out parenting instructions and essential chores; Van needs a diaper change and a bath, we need to wash his nap mat for school on Monday, no more cookies - he needs some fiber! For his part, Steve played Mr. Mom perfectly. He even managed a trip to the train show at a local coliseum, which was a huge hit. But this was the toughest part for me. Not being able to take care of Van, of Steve, of our family, is harder to stomach than the physical pain. Skipping the family pillow fights, missing the last kiss before he runs off into his classroom, trying to explain to a wide eyed 2-year old that Mommy can't play hide and seek just now, is unbearable.
With the better part of 36 hours sans chemo now I can feel myself healing though. The nausea has dissipated and the pain is now more a dull ache with only the occasional sharp pang reminding me not to get too comfortable.
As dark as this was physically, it was a challenge emotionally as well. Up until Friday night, I had largely been the same, albeit a bit more prone to naps. This weekend however I spent most of my time clenched into the fetal position, reminding myself that the end justifies the means and gritting my way through a little mantra cross stitched on the waiting room wall of the comprehensive cancer center, 'Every cell in my body is well'. At some point, I did abandon that in favor of 'Find a happy place, find a happy place.'
I would periodically croak out parenting instructions and essential chores; Van needs a diaper change and a bath, we need to wash his nap mat for school on Monday, no more cookies - he needs some fiber! For his part, Steve played Mr. Mom perfectly. He even managed a trip to the train show at a local coliseum, which was a huge hit. But this was the toughest part for me. Not being able to take care of Van, of Steve, of our family, is harder to stomach than the physical pain. Skipping the family pillow fights, missing the last kiss before he runs off into his classroom, trying to explain to a wide eyed 2-year old that Mommy can't play hide and seek just now, is unbearable.
Saturday, February 20, 2010
Week Two of Treatment
I wrapped up my second week of treatment yesterday. This last week really wasn't bad, although it seems like a bit of a cheat week as I didn't have to do too much - Mom was here and in her usual Energizer Bunny way she cooked, cleaned and shopped enough to get us through the week and prep us for the next couple.
All in all though, I think I've been lucky as side effects go, at least so far; fatigue of course, a touch of nausea periodically, and the last two days some abdominal pain that is not insignificant, but still a mild response.
On Monday, the chemo pump will be removed. Though I'll still have daily radiation, I'm looking forward to the two-week break from chemo. With the pump on showers are not allowed, unless you wrap your upper body in saran wrap and stand with your back to the water, and then what's the point? So I've been taking baths, using great care not to get the pump and the bandages securing the needle in at the port wet. While I might have previously enjoyed a bubble bath once or twice a year in our antique clawfoot, daily before work is just not that enjoyable - and bending over to wash your hair upside down even less so. Then again, I still have a full head of hair to wash!
All in all though, I think I've been lucky as side effects go, at least so far; fatigue of course, a touch of nausea periodically, and the last two days some abdominal pain that is not insignificant, but still a mild response.
On Monday, the chemo pump will be removed. Though I'll still have daily radiation, I'm looking forward to the two-week break from chemo. With the pump on showers are not allowed, unless you wrap your upper body in saran wrap and stand with your back to the water, and then what's the point? So I've been taking baths, using great care not to get the pump and the bandages securing the needle in at the port wet. While I might have previously enjoyed a bubble bath once or twice a year in our antique clawfoot, daily before work is just not that enjoyable - and bending over to wash your hair upside down even less so. Then again, I still have a full head of hair to wash!
Tuesday, February 16, 2010
Stopping to Smell the Roses
I have been thinking quite a bit about how I can learn from this experience, and what good I can extract from it. While I'm sure this will lead to many epiphanies along the way, the first is an instant and intense appreciation for the life I have - the people, the experiences, the love, joy and sense of deep, deep satisfaction. I certainly wasn't oblivious to this before, but perhaps I didn't appreciate it quite as much as I should have?
In discussing with a friend, Tasha, she shared that she and her family keep a journal, each day writing down something that made them happy and something that they hope for in the future - then she sent me a journal, with a pen, thereby robbing me of any excuse. Not surprisingly, I found the greatest joy in very simple pleasures that might be easily overlooked in the chaos of the average day.
Here are just a few of the things that I have noted the last few weeks.
Things that made me happy;
Things that I hope for in the future;
In discussing with a friend, Tasha, she shared that she and her family keep a journal, each day writing down something that made them happy and something that they hope for in the future - then she sent me a journal, with a pen, thereby robbing me of any excuse. Not surprisingly, I found the greatest joy in very simple pleasures that might be easily overlooked in the chaos of the average day.
Here are just a few of the things that I have noted the last few weeks.
Things that made me happy;
- Listening to Steve and Van playing the guitar together
- Skiing with Steve, my Dad and friends at Vail on a blue bird day, with a chaser of beers and pizza on the deck at Vendetta's
- Ramon, Bella and Van having tickle fights
- Being awoken from a really delicious nap on a Saturday afternoon by a tiny 'Hi Mama' from the edge of the bed
- Brooke's braised short ribs and Beth's midnight madness pie - yes, I may be the only patient in the history of cancer to put weight on during treatment, but I figure now is not the time to deprive myself
- Van started asking for family hugs - over and over
- My sister-in-law Karen sent me an amazing box of books including old titles that bring a flood of memories from Mrs. Krinsky's high school English class, and new titles that will expand my horizons
- Holding little Lila for the first time and breathing in that aroma of hope and promise that newborns naturally exude
- Seeing Scott (a rough, gruff, 230 lb. Gulf War veteran) take time out from watching football with the boys to gently brush his little girl Riley's hair into a ponytail
- Van and Yenny (his Grandpa) having pillow fights, just as Pop did with us every night when we were kids
- My mom coming to visit.
Things that I hope for in the future;
- Despite the great distance between New York and Colorado, Van will come to know Keira, Jimmy and those that follow more as brothers and sisters than as cousins
- A long trip to Vancouver and the surrounding areas during a big snow year - doesn't it look gorgeous?
- A year from now, I will reach a point where no doctor will need to write on my body with sharpie markers again - or at least until I am a very, very old woman
- I will be able to pay forward the many great kindnesses that are being shown to my family and to me every day by friends, family, colleagues and in some cases, absolute strangers.
Monday, February 8, 2010
One Down...
Treatment started Monday. Radiation bright and early at 7:45. For those of you that have seen me early in the morning, you know this is not my shining hour, but it seems inappropriate and risky to be rude to people working to cure you of cancer, so I muster as much courtesy as I can.
For the moment, radiation is easy. I just lay there while the techs line me up just so, and the machine and its ray of light does the rest. I can't see them as I'm face down on the table, but on occasion their 'adjustments' feel more like the three of them are just standing around and poking me. I might be less paranoid if I had pants on.
Following radiation, I went to chemo. After a brief visit with my oncologist, he walked me up to the 3rd floor to begin my first round of chemo infusion. My oncology nurse promptly introduced herself as a 7-yr survivor of rectal cancer - a good omen I think, and certainly a reminder that cure rates are high and life goes on.
So, after several hours of tests, port prep and instruction, I left hooked up to a pump about the size of a walkman, full of the 5-FU chemo. I get to wear this 24x7 for the next week, with a refill scheduled for next Monday. The pump comes with some heavy warnings; don't get anything wet, keep a spare battery handy, check your 'dose given' reading periodically to make sure it is working, and the most concerning - should the tube be damaged and start to leak, double bag it and seal it, as the drug can cause a chemical burn. I asked what the odds are of damage and was told that the most frequent issue is cats chewing through the tubes...I'm willing to bet that while Mr. Jingles is gnawing away, the Jerry Springer show is on in the background.
Despite all of the poking, the needles, the waiver forms outlining possible side effects, what I felt most yesterday was relief. From this point on, the tumor will only get smaller and weaker, destroyed cell by cell, until it ceases to exist and I am cancer free.
For the moment, radiation is easy. I just lay there while the techs line me up just so, and the machine and its ray of light does the rest. I can't see them as I'm face down on the table, but on occasion their 'adjustments' feel more like the three of them are just standing around and poking me. I might be less paranoid if I had pants on.
Following radiation, I went to chemo. After a brief visit with my oncologist, he walked me up to the 3rd floor to begin my first round of chemo infusion. My oncology nurse promptly introduced herself as a 7-yr survivor of rectal cancer - a good omen I think, and certainly a reminder that cure rates are high and life goes on.
So, after several hours of tests, port prep and instruction, I left hooked up to a pump about the size of a walkman, full of the 5-FU chemo. I get to wear this 24x7 for the next week, with a refill scheduled for next Monday. The pump comes with some heavy warnings; don't get anything wet, keep a spare battery handy, check your 'dose given' reading periodically to make sure it is working, and the most concerning - should the tube be damaged and start to leak, double bag it and seal it, as the drug can cause a chemical burn. I asked what the odds are of damage and was told that the most frequent issue is cats chewing through the tubes...I'm willing to bet that while Mr. Jingles is gnawing away, the Jerry Springer show is on in the background.
Despite all of the poking, the needles, the waiver forms outlining possible side effects, what I felt most yesterday was relief. From this point on, the tumor will only get smaller and weaker, destroyed cell by cell, until it ceases to exist and I am cancer free.
Sunday, February 7, 2010
Locks of Love
In April of 2007, a colleague at Avnet, Chuck, was diagnosed with a particularly rare cancer. At the time, I had two other friends, Greg and Dave, in cancer treatment as well. Only weeks away from Van's due date, the contrast of our life changing events weighed heavy on me.
In a show of solidarity, several of Chuck's pals shaved their heads with him as he began to undergo an intense regimen of biochemotherapy - an even more poisonous version than your run of the mill chemotherapy. Bald not being my best look and my hair being one of my better assets, I went the other way - I started growing it out with the intent of donating.
It has taken me 22 months to grow the minimum 10 inch ponytail, and on Friday I finally made my donation. During that time, some friends have won and others lost their battles, while still others continue to fight or have been diagnosed - I dedicate my donation to all of them.
In a show of solidarity, several of Chuck's pals shaved their heads with him as he began to undergo an intense regimen of biochemotherapy - an even more poisonous version than your run of the mill chemotherapy. Bald not being my best look and my hair being one of my better assets, I went the other way - I started growing it out with the intent of donating.
It has taken me 22 months to grow the minimum 10 inch ponytail, and on Friday I finally made my donation. During that time, some friends have won and others lost their battles, while still others continue to fight or have been diagnosed - I dedicate my donation to all of them.
Thursday, February 4, 2010
Scars Add Character
I had my port installed yesterday. The small contraption is a little bigger than a nickel in diameter and about half an inch tall. The port is placed under the skin about two inches under my right collar bone. A catheter runs under the skin from the port into a main vein just at the collar bone. You won't see the catheter at all, just the small lump of the port.
It was installed via a brief outpatient surgery under local anasthesia and 'conscious sedation', which is supposed to be just enough valium and pain killer to make you nap comfortably - although in my case, I was awake and chatting with the surgeon throughout the procedure, and promptly fell asleep on the gurney ride back to my room.
Once the incision heals in a few days, I'll start receiving a steady stream of chemo drugs via a special needle into the port - it won't hurt at all, and it will save me from regular IVs in the arm or hand.
Pre-bomb drop my dad had already made plans to be in skiing this week, so when Donovan came down with a fever the night before, Pop relieved Steve and stepped in to take me to the procedure. I've shared a lot of details about my tests and treatment of course, but I don't look or feel sick at all, so yesterday was the first real visual of what's happening here. Once they had me settled in my room, prep for surgery included taking some blood, an IV of antibiotics, frequent oxygen, blood pressure and temperature monitoring, 400 questions about my prior health history. It hit hard, and Pop was very quiet. As much as I'm prepared for this personally, I couldn't imagine if it was my baby they were poking and prodding.
The port will come out eventually, when treatment is all over and I've had enough clean PT scans to suggest remission. You've probably seen a port scar - a 2" straight line just under the collar bone. It's one of those unmistakable telltale scars, like that half moon a rifle scope marks in the eyebrow of a shooter to close to his weapon, or the burn scar across the inner calf of a woman foolish enough to wear shorts on a motorcycle. I was warned in advance about the kick back of a rifle, and my pipe burn from learning to ride a dirt bike at 13 has long since faded - but this scar I will wear with pride.
It was installed via a brief outpatient surgery under local anasthesia and 'conscious sedation', which is supposed to be just enough valium and pain killer to make you nap comfortably - although in my case, I was awake and chatting with the surgeon throughout the procedure, and promptly fell asleep on the gurney ride back to my room.
Once the incision heals in a few days, I'll start receiving a steady stream of chemo drugs via a special needle into the port - it won't hurt at all, and it will save me from regular IVs in the arm or hand.
Pre-bomb drop my dad had already made plans to be in skiing this week, so when Donovan came down with a fever the night before, Pop relieved Steve and stepped in to take me to the procedure. I've shared a lot of details about my tests and treatment of course, but I don't look or feel sick at all, so yesterday was the first real visual of what's happening here. Once they had me settled in my room, prep for surgery included taking some blood, an IV of antibiotics, frequent oxygen, blood pressure and temperature monitoring, 400 questions about my prior health history. It hit hard, and Pop was very quiet. As much as I'm prepared for this personally, I couldn't imagine if it was my baby they were poking and prodding.
The port will come out eventually, when treatment is all over and I've had enough clean PT scans to suggest remission. You've probably seen a port scar - a 2" straight line just under the collar bone. It's one of those unmistakable telltale scars, like that half moon a rifle scope marks in the eyebrow of a shooter to close to his weapon, or the burn scar across the inner calf of a woman foolish enough to wear shorts on a motorcycle. I was warned in advance about the kick back of a rifle, and my pipe burn from learning to ride a dirt bike at 13 has long since faded - but this scar I will wear with pride.
Tuesday, February 2, 2010
And so it begins...
On January 19, 2010, I was diagnosed with colorectal cancer. I keep saying colorectal, but really it's rectal cancer. Butt cancer. Seriously? Puns and jokes are too easy, if you have a sense of humor about this...and I think you have to. For example, I don't think this is what Steve meant when he said he always liked that I have a little junk in the trunk...
At this point, I imagine some of you want specifics. The tumor is graded T3-N1, which translates to stage III. Treatment is three phases; about 6 weeks of concurrent radiation and chemo, followed by surgery and a few weeks of recovery, and then several more months of chemo. That should take us through about October. I am sure this is where the bad news ends though.
There has been no metastasis and I'm otherwise healthy and strong, so I've been given an excellent prognosis from a team of exceptional caregivers - this particular cancer is very treatable. We are lucky enough to have a tremendous pit crew of family, friends and colleagues who are already helping build a tide of good juju out in the universe, and to ease any day to day burden. I have terrific health insurance and other resources at my disposal. And most of all, I have Steve and Van offering their usual steady supply of laughs and love.
So, the next 9 months or so will be an enormous challenge - I expect I'll learn a lot about myself, my family and friends, and I'll certainly get an up close look at the healthcare industry. But, as I've told many of you, I've always believed in Mark Twain's quote, 'it's not the size of the dog in the fight but the size of the fight in the dog that counts.' I've got plenty of fight in me, and I have never been as sure of anything as I am of being a cancer survivor.
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