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!
Thursday, June 17, 2010
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.
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