When on any journey in life, it's important to stop every once in a while and take a status check: Where are you in life? What's going well? What isn't so hot? How can you change the parts you don't like? Where do you want to go from here?
But it's really easy to get caught up in work, family responsibilities, activities, chaos and the lives of others (because face it, some people have WAY more drama in their lives than can possibly be good and it's so easy to get sucked into it). But if you don't take the time to examine you, how can you possibly be getting the most out of your life?
While I usually completed this introspection a couple times a year before my cancer diagnosis - especially when I was feeling unsatisfied with some portion of my life - I find I do it more now. My realistically shorter lifeline gives me a smack-in-the-face realization there's only so much time, and I can't continually put things off until tomorrow. But if we all think about it, there's no time guarantee for any of us.
Self-introspection is hard because it makes us examine aspects of ourselves we may not like and face realities we'd rather keep buried. If we're really serious about the exercise, it also forces us to make changes in our lives.
We can't keep doing the same things and expecting different results.
My blog helps me sort out many of these thoughts and issues. To talk to all of you, I have to figure out what I'm going through. But I also see an awesome social worker, who raises different questions and prompts me to think about siutations in new ways. I generally walk out of her office with a couple of new things to comtemplate. Sometimes these ideas make me look at my world slightly differently, and other times they prompt change and action.
But in the end, it's all good. These exercises help me make those very important steps forward. And one of the best things about working with a therapist is the work can - and should be - all about you. It's your issues and how you can change things in your life. It's about figuring out what will make you better, happier, more fulfilled or healed.
A recurring theme over my last couple of sessions has been trying to live my life to the fullest against the struggle of feeling sick for so long, and therefore feeling stagnant. I know I've touched on that topic in my blog a few times. It's hard being hopeful, planning and enjoying events when it's a struggle to get up and put on a brave face every day. Yet, I feel I'm wasting time. So I struggle with that paradox.
I'm also trying to deal with the notion of slipping in and out of my normal life. I have a life where I'm busy with work, activities, friends and engagements, from which I disappear for long stretches of time about once a year. That gets a bit harder each time because of the lack of social contact a normal life gives me. With each bout with cancer, I also find I have less time and energy to be social and engaging, which makes me feel guilty I'm not as present with the lives of my family and friends. The entire experience also leaves me more isolated.
But please don't take my last comments as throwing shadow on my amazing support system. My village is amazing and I am so lucky so many wonderful people choose to be part of it. That means there are lots of different people to step in, hold my hand, offer words of comfort and ensure I'm doing okay. God bless you all.
As you can tell from my rambling writing, I still have some thoughts to sort out from my social worker session yesterday; but I'm comforted by the small forward momentum in my brain. I like working on myself to make me better and to improve my life. We've only got one to live, so we need to make the most of it.
Tina
Wednesday, November 30, 2011
Tuesday, November 29, 2011
Oh how I've missed you
Yesterday, I was finally given the green light to slip my poor, aching body back into the warm, swirling waters of my hot tub. Given all the incision, drain, puncture and needle sites on my abdomen are closed, I can once again take advantage of the pulsating and therapeutic jets on my muscles.
It felt SO good. "Oh, my little hot tub, how I've missed you."
Since my pigtail was inserted on Aug. 2, I've been banned from submerging my body in water. So there's been no swimming, baths or hot tubs for me over the past four months. While that may not be a big deal to some, the limitations made me sad and a bit cranky. Now, I do need to ensure my PICC line stays dry to prevent infection, but I have a thick, plastic sleeve that's doing the job perfectly fine. I've also ordered a special cover off the Internet that's supposed to allow me to swim too.
While I need to initially limit my time, even a 20 minute soak twice yesterday untangled knots in my back and shoulders. I felt more relaxed. I slept better. And I'm hoping the jets will keep those stomach and bowel muscles stimulated and encouraged to keep working.
I've always been a water person and so I'm back in my element. I'm looking forward to my soaks today. Ah!
Tina
It felt SO good. "Oh, my little hot tub, how I've missed you."
Since my pigtail was inserted on Aug. 2, I've been banned from submerging my body in water. So there's been no swimming, baths or hot tubs for me over the past four months. While that may not be a big deal to some, the limitations made me sad and a bit cranky. Now, I do need to ensure my PICC line stays dry to prevent infection, but I have a thick, plastic sleeve that's doing the job perfectly fine. I've also ordered a special cover off the Internet that's supposed to allow me to swim too.
While I need to initially limit my time, even a 20 minute soak twice yesterday untangled knots in my back and shoulders. I felt more relaxed. I slept better. And I'm hoping the jets will keep those stomach and bowel muscles stimulated and encouraged to keep working.
I've always been a water person and so I'm back in my element. I'm looking forward to my soaks today. Ah!
Tina
Monday, November 28, 2011
3 a.m.
A person should not wake up for the day at 3 a.m. The world is dark and the house is quiet. Typically, when I wake at such an early hour, I mentally cheer at all the additional minutes of sleep before my alarm clock jolts me to reality.
But, as you guessed, I've been awake since 3 this morning. Mind you, I was curled beneath my cozy, flannel sheets, exhaustedly settling in last night at 9 p.m. Yet, even with my early bedtime, I needed and expected to get more than five hours of body-healing, mind clearing, restful sleep.
Oh sure, I tried to coax my body into returning to restful slumber, but just before 5 a.m., I gave it up and climbed out of bed. Now I'm sipping a tea, noshing on a muffin and contemplating activities for the day. I have lots I could do, but I have to balance those chores out with the rest my body so badly needs to recover from chemo on Thursday. A little work, a little reading sounds just about right.
I'm also already planning the optimal time to nap. I'm sure I'll be ready to plunk my head back on the pillow mid-morning; shortly after the kids go to school.
As a cancer patient undergoing treatment, I need to let my body lead and go with the flow. In many ways, we should all follow that same advice, listening to our bodies more and being kinder to it when it protests. Believe me, this great advice is far harder to follow some days than others.
Tina
But, as you guessed, I've been awake since 3 this morning. Mind you, I was curled beneath my cozy, flannel sheets, exhaustedly settling in last night at 9 p.m. Yet, even with my early bedtime, I needed and expected to get more than five hours of body-healing, mind clearing, restful sleep.
Oh sure, I tried to coax my body into returning to restful slumber, but just before 5 a.m., I gave it up and climbed out of bed. Now I'm sipping a tea, noshing on a muffin and contemplating activities for the day. I have lots I could do, but I have to balance those chores out with the rest my body so badly needs to recover from chemo on Thursday. A little work, a little reading sounds just about right.
I'm also already planning the optimal time to nap. I'm sure I'll be ready to plunk my head back on the pillow mid-morning; shortly after the kids go to school.
As a cancer patient undergoing treatment, I need to let my body lead and go with the flow. In many ways, we should all follow that same advice, listening to our bodies more and being kinder to it when it protests. Believe me, this great advice is far harder to follow some days than others.
Tina
Saturday, November 26, 2011
Brutal
Horrifying
Painful
Less than productive
Awful
Rooting
Torture
Those are a few descriptions I'd use to describe my paracentisis yesterday. It was probably my seventh time having this procedure, which involves sticking a giant needle in my abdomen to draw out excess ascities. This was by far the worst. It was also the least productive with only 1L of the liquid siphoning off.
Dr. W asked a colleague step in because he had no time in his schedule. I remembered this doctor when he performed this procedure on me a couple of years ago and recalled uncomfortable results. The little, optimistic hope I had for a smooth and relatively painless experience was shattered shortly after the process started.
I'm not going into all the gory details, but suffice to say, this doc made me cry. I don't usually produce waterworks during medical procedures. I moan, breathe deeply, grunt and even produce some little wails, but I'm generally pretty stoic..
I staved most of the tears until everyone had left the room, but some sprang to my eyes during the needle exploration in my abdomen. It's tip scraped my bowel a few times, and the entire process felt as though the doc were on a reckless treasure hunt. When I was alone, I broke down from the pain and hideousness of it all.
In fact, I'm still sore today and the nurse who watched the procedure (and was flinching) told me I'd probably be bruised for the next few days. Luckily, the chemo seems to be working and fluid production decreasing, so I shouldn't need paracentisis again.
On a positive note, my blood pressure and pulse both dropped, and I can see a decrease in the roundness of my abdomen. But I'm not sure it was worth it.
Tina
Painful
Less than productive
Awful
Rooting
Torture
Those are a few descriptions I'd use to describe my paracentisis yesterday. It was probably my seventh time having this procedure, which involves sticking a giant needle in my abdomen to draw out excess ascities. This was by far the worst. It was also the least productive with only 1L of the liquid siphoning off.
Dr. W asked a colleague step in because he had no time in his schedule. I remembered this doctor when he performed this procedure on me a couple of years ago and recalled uncomfortable results. The little, optimistic hope I had for a smooth and relatively painless experience was shattered shortly after the process started.
I'm not going into all the gory details, but suffice to say, this doc made me cry. I don't usually produce waterworks during medical procedures. I moan, breathe deeply, grunt and even produce some little wails, but I'm generally pretty stoic..
I staved most of the tears until everyone had left the room, but some sprang to my eyes during the needle exploration in my abdomen. It's tip scraped my bowel a few times, and the entire process felt as though the doc were on a reckless treasure hunt. When I was alone, I broke down from the pain and hideousness of it all.
In fact, I'm still sore today and the nurse who watched the procedure (and was flinching) told me I'd probably be bruised for the next few days. Luckily, the chemo seems to be working and fluid production decreasing, so I shouldn't need paracentisis again.
On a positive note, my blood pressure and pulse both dropped, and I can see a decrease in the roundness of my abdomen. But I'm not sure it was worth it.
Tina
Friday, November 25, 2011
Slide into the electric
Tzzzzzzdt, tzzzzzzdt.
That's what my brain felt like last night as I tried to go to sleep. An electric sensation gripped my brain from the steroids and my thoughts were traveling a million miles a minute. I laid in the dark, waiting for the lorazepam to kick it, willing my body and mind to calm down. I was singing songs, tapping my fingertips on Michael's shoulder and making him laugh at the absurdity, writing a blog, thinking about Christmas shopping, dreaming up meals to eat, etc. It was a bit chaotic.
I tried deep breathing, imagery and prayer; but I'd focus on that specific mind-calming activity for about 60 seconds before my mind cavorted to another oh-so-important topic.
Yup, the hexagonal, white steroids are doing their job inside me. Besides the few hours of sleep I lost, I'm thrilled to report I kept dinner and breakfast down, I'm eagerly anticipating my next meal, my stomach doesn't ache, I have enthusiasm for the day and the energy to actually accomplish something. I've been up since about 5 a.m. checking online specials, doing some Christmas shopping and creating items for my to-do list. I like this Tina because it's far closer to the real me - and I will take advantage of it as long as I can.
The only side effect from the Gemcitabine so far (and it IS still very early) is some abdominal pain. I'm attributing it to the ninjas completing their dueling job with the cancer cells. Go my stealthy, black, warriors.
Check out my cute little ninja. He was a gift from my friend, Laura.
So, while the steroid high lasts, I'll enjoy life and sing. Speaking of singing, now you too can reveal in the awesomeness of the Team Tina Twinkle Toes as they performed Don't Stop Believing at Syncapalooza. So amazing.
(But because I'm not technically challenged enough to embed the video in the blog, here's the link.)
Enjoy!
Tina
That's what my brain felt like last night as I tried to go to sleep. An electric sensation gripped my brain from the steroids and my thoughts were traveling a million miles a minute. I laid in the dark, waiting for the lorazepam to kick it, willing my body and mind to calm down. I was singing songs, tapping my fingertips on Michael's shoulder and making him laugh at the absurdity, writing a blog, thinking about Christmas shopping, dreaming up meals to eat, etc. It was a bit chaotic.
I tried deep breathing, imagery and prayer; but I'd focus on that specific mind-calming activity for about 60 seconds before my mind cavorted to another oh-so-important topic.
Yup, the hexagonal, white steroids are doing their job inside me. Besides the few hours of sleep I lost, I'm thrilled to report I kept dinner and breakfast down, I'm eagerly anticipating my next meal, my stomach doesn't ache, I have enthusiasm for the day and the energy to actually accomplish something. I've been up since about 5 a.m. checking online specials, doing some Christmas shopping and creating items for my to-do list. I like this Tina because it's far closer to the real me - and I will take advantage of it as long as I can.
The only side effect from the Gemcitabine so far (and it IS still very early) is some abdominal pain. I'm attributing it to the ninjas completing their dueling job with the cancer cells. Go my stealthy, black, warriors.
Check out my cute little ninja. He was a gift from my friend, Laura.
So, while the steroid high lasts, I'll enjoy life and sing. Speaking of singing, now you too can reveal in the awesomeness of the Team Tina Twinkle Toes as they performed Don't Stop Believing at Syncapalooza. So amazing.
(But because I'm not technically challenged enough to embed the video in the blog, here's the link.)
Enjoy!
Tina
Thursday, November 24, 2011
30 min + 4 hours
At 7:45 a.m., the cancer centre is pretty calm and quiet, which is exactly how I like it. I thought, I'd be in, get my Gemcitabine chemo and be on my way before the place filled up.
I checked in and filled out my "how ya doin'?" questionnaire that now accompanies every chemo treatment. On it, I mentioned I'm upchucking every day, can't keep food down and am blowing up with ascities (not in those exact words, of course). My complaints instigated action by my chemo nurse.
Usually, I'd only need blood tests to ensure my red and white blood cells counts were high enough to get my next dose of chemo; but she drew extra vials to check my electrolytes, which could be out of whack from all the vomiting. She also called Dr. W, who visited me in the chemo suite.
After assessing my situation, he ordered a series of abdominal x-rays to rule out a obstructed bowel. "Oh shit," I thought, "just what I need." (And yes, pun intended.) Thank God, no obstruction!
To help me eat, Dr W prescribed a week's worth of Dexamethasone. Now, you know my love/hate relationship with this steroid, but I really miss eating and I'm sure he'll watch me carefully. In fact, Dr. W wants to see me again in a week. I'm also getting ascities drained via paracentisis tomorrow morning. The big needle in the abdomen to remove the fluid is an awful procedure, but it provides such relief. Hopefully, this will be the last time before the chemo starts to work on drying it up.
At one point during the morning, Dr W talked about the possibility of postponing today's chemo treatment. He asked me how I felt about that possibility. My reaction in my head was, "Are you freaking kidding me? Give me the chemo. Let's kill these bastards." To him, I said, "I'd like to get the chemo."
With the clear x-rays, I finally started getting the Gemcitabine about 2-1/2 hours after I checked in. After a quick infusion, Michael and I walked out of the hospital after noon.
With a Dexamethasone on board, I got ambitious with lunch, happily munching down on loaded spinach salad and a tuna salad croissant. But I didn't really give the little white pill enough time to work and I saw it all again mid afternoon. Ever the trooper (or glutton for punishment), I tried again at dinner with a delicious spinach and cheese ravioli in blush sauce. Two hours later, it's still staying down. Fingers crossed, it'll stay there.
Tonight, I feel pretty good. I have no idea what the next few days will bring in terms of side effects from the Gemcitabine alone, but I'll deal with them as they come because this treatment is what I need. I'm thankful for that.
Tina
I checked in and filled out my "how ya doin'?" questionnaire that now accompanies every chemo treatment. On it, I mentioned I'm upchucking every day, can't keep food down and am blowing up with ascities (not in those exact words, of course). My complaints instigated action by my chemo nurse.
Usually, I'd only need blood tests to ensure my red and white blood cells counts were high enough to get my next dose of chemo; but she drew extra vials to check my electrolytes, which could be out of whack from all the vomiting. She also called Dr. W, who visited me in the chemo suite.
After assessing my situation, he ordered a series of abdominal x-rays to rule out a obstructed bowel. "Oh shit," I thought, "just what I need." (And yes, pun intended.) Thank God, no obstruction!
To help me eat, Dr W prescribed a week's worth of Dexamethasone. Now, you know my love/hate relationship with this steroid, but I really miss eating and I'm sure he'll watch me carefully. In fact, Dr. W wants to see me again in a week. I'm also getting ascities drained via paracentisis tomorrow morning. The big needle in the abdomen to remove the fluid is an awful procedure, but it provides such relief. Hopefully, this will be the last time before the chemo starts to work on drying it up.
At one point during the morning, Dr W talked about the possibility of postponing today's chemo treatment. He asked me how I felt about that possibility. My reaction in my head was, "Are you freaking kidding me? Give me the chemo. Let's kill these bastards." To him, I said, "I'd like to get the chemo."
With the clear x-rays, I finally started getting the Gemcitabine about 2-1/2 hours after I checked in. After a quick infusion, Michael and I walked out of the hospital after noon.
With a Dexamethasone on board, I got ambitious with lunch, happily munching down on loaded spinach salad and a tuna salad croissant. But I didn't really give the little white pill enough time to work and I saw it all again mid afternoon. Ever the trooper (or glutton for punishment), I tried again at dinner with a delicious spinach and cheese ravioli in blush sauce. Two hours later, it's still staying down. Fingers crossed, it'll stay there.
Tonight, I feel pretty good. I have no idea what the next few days will bring in terms of side effects from the Gemcitabine alone, but I'll deal with them as they come because this treatment is what I need. I'm thankful for that.
Tina
Wednesday, November 23, 2011
First to me
They may have placed second in the competition, but they're first in my heart.
Every year, London Life holds a fundraising "concert" called Syncapalooza. This extravaganza involves individuals dressing up (usually crazily), and lip syncing and dancing (and other funny anctics) to a song; much to the delight of the ticket-buying audience. All to raise money for the United Way. It's always fun, but this year it made me cry.
A bunch of my friends put together a performance in my honour, singing and dancing to Don't Stop Believing. They sported their Team Tina yellow t-shirts, hammed it up, played air guitar and shook their patooties around the stage. I loved it!
Now I know many of those who were up on that stage wouldn't normally participate in Syncapalooza, but they did it for me. How amazing is that? I get chills just thinking about all the support and love I have. This wonderful performance reinforced that for me. I know it made me and Michael cry, and I saw a few other tears as well.
Check out the photo from after the performance with me sitting proudly in the middle.
You guys were amazing and in my books you earned first place. Thank you from the bottom of my heart for the outpouring of love (and all the great hugs).
Tina
Every year, London Life holds a fundraising "concert" called Syncapalooza. This extravaganza involves individuals dressing up (usually crazily), and lip syncing and dancing (and other funny anctics) to a song; much to the delight of the ticket-buying audience. All to raise money for the United Way. It's always fun, but this year it made me cry.
A bunch of my friends put together a performance in my honour, singing and dancing to Don't Stop Believing. They sported their Team Tina yellow t-shirts, hammed it up, played air guitar and shook their patooties around the stage. I loved it!
Now I know many of those who were up on that stage wouldn't normally participate in Syncapalooza, but they did it for me. How amazing is that? I get chills just thinking about all the support and love I have. This wonderful performance reinforced that for me. I know it made me and Michael cry, and I saw a few other tears as well.
Check out the photo from after the performance with me sitting proudly in the middle.
You guys were amazing and in my books you earned first place. Thank you from the bottom of my heart for the outpouring of love (and all the great hugs).
Tina
Climbing up
I'm slowly making my way back up from the basement of chemo. I started feeling better yesterday and hopefully that bodes well for improvement again today. Hopefully tomorrow's treatment doesn't kick me back down the stairs. I'm looking forward to being semi-productive and a little more social.
As a side note, I obviously miss eating because I dreamt about a bacon cheeseburger last night. Sheesh.
Tina
As a side note, I obviously miss eating because I dreamt about a bacon cheeseburger last night. Sheesh.
Tina
Tuesday, November 22, 2011
Ka-chunk
The laces slipped through my tenuous grasp and the shoes clattered noisily on the floor yesterday. I felt awful - shaky, stiff and sore, with flu-like symptoms and a wicked headache. Yup, the other shoe dropped.
Yesterday morning, I had a follow-up appointment with the surgeon who supervised my care during my stint in the hospital and it was all I could do not to cry while waiting in the cancer centre. I was that uncomfortable. When I did see him, it was for five minutes. He said the appointment was to ensure I didn't fall through the health care cracks and assure me I can see him again, if need be. Great. Thanks. Then I went home to bed, where I spent most of the day.
I'm sure I'm feeling so crappy because I'm getting dehydrated. I can't drink much and my body isn't really able to process much food. Even though I had a Boost in the morning, some soup at lunch, a Gatorade-type drink throughout the day and an Ensure at night, I threw it all up last night. I'm quaffing back the anti-nausea medication, but they don't cut it like the steroids. But I'm afraid to take the steroids (and my prescription is done anyway). As well, the ascities is building and pressing on my abdomen, which allows little movement in my poor tummy.
Things should improve once the chemo attacks the tumours and the ascities, but I'm so damn tired of waiting to feel better. Hurry up already! Of course, I'll mention all these happenings to Dr. W when I see him next. He may have some great idea for making things easier on me in the meantime.
If this round of chemo is any indication (and there's no guarantee it is because of all my other complications), days 3 and 4 seem to be the worst ones for side effects. I feel better today with only a headache, stiff neck and back, and bloating pain from the ascities as my main complaints. My goal today is to rehydrate myself with Gatorade and supplements, and not worry so much about eating. As much as I love it, food is not my friend right now.
Then on Thursday, I'll go get another cancer-blasting dose of chemo. Hopefully, each one will make me feel better and move me towards my goal of beating this stupid disease.
Tina
Yesterday morning, I had a follow-up appointment with the surgeon who supervised my care during my stint in the hospital and it was all I could do not to cry while waiting in the cancer centre. I was that uncomfortable. When I did see him, it was for five minutes. He said the appointment was to ensure I didn't fall through the health care cracks and assure me I can see him again, if need be. Great. Thanks. Then I went home to bed, where I spent most of the day.
I'm sure I'm feeling so crappy because I'm getting dehydrated. I can't drink much and my body isn't really able to process much food. Even though I had a Boost in the morning, some soup at lunch, a Gatorade-type drink throughout the day and an Ensure at night, I threw it all up last night. I'm quaffing back the anti-nausea medication, but they don't cut it like the steroids. But I'm afraid to take the steroids (and my prescription is done anyway). As well, the ascities is building and pressing on my abdomen, which allows little movement in my poor tummy.
Things should improve once the chemo attacks the tumours and the ascities, but I'm so damn tired of waiting to feel better. Hurry up already! Of course, I'll mention all these happenings to Dr. W when I see him next. He may have some great idea for making things easier on me in the meantime.
If this round of chemo is any indication (and there's no guarantee it is because of all my other complications), days 3 and 4 seem to be the worst ones for side effects. I feel better today with only a headache, stiff neck and back, and bloating pain from the ascities as my main complaints. My goal today is to rehydrate myself with Gatorade and supplements, and not worry so much about eating. As much as I love it, food is not my friend right now.
Then on Thursday, I'll go get another cancer-blasting dose of chemo. Hopefully, each one will make me feel better and move me towards my goal of beating this stupid disease.
Tina
Monday, November 21, 2011
Footware slip
Yesterday, the shoe I'd hoped wouldn't drop slipped from my grasp and I'm now using my fingertips to hold onto the laces. And so far, today isn't looking very good either.
Sunday morning started fine, with a cheery mood, a nice cup of coffee and a piece of peanut butter toast (the crunchy kind so you have lots of tactile excitement for the tastebuds). I read my book and lounged around, showered and dressed.
We went out to Costco - a place I HATE on Sundays because of the throngs of crazy people - to get the new Looneyspoons Collection cookbook signed by the authors. It was there the withdrawal from the steroids kicked in and I became extremely grumpy. My bowels were also working with the help-me-poop medication to cause cramping, heat flashes and gaseous movement, and nausea danced around my belly.
Then last night, I made the mistake of eating dinner. Without the steroids helping the nausea, dinner revisted me about an hour after consumption. And then I threw up again during the night. I'm afraid to eat or drink this morning, and I've got a pretty orange anti-nausea medication on board to try to help settle my out-of-sorts tummy. But I know I need the nutrients and especially the hydration, so I will have to try a supplement or something shortly.
While these side effects aren't as bad as previous chemo treatments, I doubt I'm done yet. They do make me want to crawl up in a hole, aka a nice soft bed, somewhere and ride them out. I'm not good company nor do I make friendly conversation. So forgive me if I'm slow getting back to you or out-of-sorts. I just have to take it one day at a time and do the best I can.
Tina
Sunday morning started fine, with a cheery mood, a nice cup of coffee and a piece of peanut butter toast (the crunchy kind so you have lots of tactile excitement for the tastebuds). I read my book and lounged around, showered and dressed.
We went out to Costco - a place I HATE on Sundays because of the throngs of crazy people - to get the new Looneyspoons Collection cookbook signed by the authors. It was there the withdrawal from the steroids kicked in and I became extremely grumpy. My bowels were also working with the help-me-poop medication to cause cramping, heat flashes and gaseous movement, and nausea danced around my belly.
Then last night, I made the mistake of eating dinner. Without the steroids helping the nausea, dinner revisted me about an hour after consumption. And then I threw up again during the night. I'm afraid to eat or drink this morning, and I've got a pretty orange anti-nausea medication on board to try to help settle my out-of-sorts tummy. But I know I need the nutrients and especially the hydration, so I will have to try a supplement or something shortly.
While these side effects aren't as bad as previous chemo treatments, I doubt I'm done yet. They do make me want to crawl up in a hole, aka a nice soft bed, somewhere and ride them out. I'm not good company nor do I make friendly conversation. So forgive me if I'm slow getting back to you or out-of-sorts. I just have to take it one day at a time and do the best I can.
Tina
Sunday, November 20, 2011
Waiting for the shoe to drop
I'm trying not to be pessimistic, but I honestly find it hard to believe these side effects are the biggest, baddest ones to be doled out by this chemotherapy combination. Quite honestly, they're inconvenient but not onerous.
I fluctate between having good energy, initiative and racing ideas to being lethargically tired and unable to concentrate beyond my bed and a book. I've tried to nap during the down times, but I believe the steroids coursing through my system stymie the mind-sinking phenomenon necessary to drift into dreamland. Luckily, I took my last dose of the small, hexagonal white pills last night, so perhaps my next nap time will be more productive.
Yet, the bonus of the anti-nausea medications, Dexamethasone and Ondansetron, is the quelling of my nauseous stomach, which allows me to eat. I can enjoy small meals, reaping the nutritional and social aspects of partaking in the sharing of food. Now, I still reply on nutritional supplements (and I'm thankful to the generous friend who supplied me with some) for some of the meals I can't quite stomach and to provide me with the balanced nutrition I need and may not necessarily get with the foods I crave.
Ironically these same little pills that encourage me to ingest food into my body are backing up my bowels, despite regular quaffing of the stool softening and poop-inducing (nice technical term, eh?) medications of Colasce and Sennokot. I've got lots of uncomfortable cramping and movement in the bowel region, but no relief.
And the steroids slightly veered me towards to the path of Bitchy Tina last night. Maybe it was tiredness or lack of a good bowel movement, but I felt more irritated than normal by dinner time (a meal, I incidently skipped).
Other than those semi-mild side effects mentioned above, I've experienced flushed cheeks, restless (but not painful legs), dull eyes with small pupils, a minor, gall-bladder type pain under my right breast and possibly, a small dulling of my tastebuds. Of course, I also have the discomfort of filling up with ascities, which luckily isn't major right now.
But based on my previous, horrible experience with chemo, I'm waiting for the other shoe to drop. Day three (which would be today) used to drop me into a deep, dark well of depression, bone pain and an out-of-body experience. Even thought Dr. W said the side effects tend to appear right after treatment, and both he and the chemo nurse said they were generally pretty mild, I'm afraid to believe it. I don't want to trust this is the worst and then be sucked into the hellish vortex. That's why I'm keeping an open mind, taking small trips, making minimal plans and sticking pretty close to home over the next few days.
But if this is the worst the Carbo/Gemcitibine chemo combination is going to throw at me - with positive, cancer-shrinking results - I'll be thrilled. So keep working my little, black ninjas with the same stealth and pain-free efficiency you've employed so far. I'll send in some Gemcitibine reinforcements on Thursday.
From where I sit right now, the day lays before us with promise. We should all do what we can to get out and enjoy this beautiful Sunday. It's a good day to be alive.
Tina
I fluctate between having good energy, initiative and racing ideas to being lethargically tired and unable to concentrate beyond my bed and a book. I've tried to nap during the down times, but I believe the steroids coursing through my system stymie the mind-sinking phenomenon necessary to drift into dreamland. Luckily, I took my last dose of the small, hexagonal white pills last night, so perhaps my next nap time will be more productive.
Yet, the bonus of the anti-nausea medications, Dexamethasone and Ondansetron, is the quelling of my nauseous stomach, which allows me to eat. I can enjoy small meals, reaping the nutritional and social aspects of partaking in the sharing of food. Now, I still reply on nutritional supplements (and I'm thankful to the generous friend who supplied me with some) for some of the meals I can't quite stomach and to provide me with the balanced nutrition I need and may not necessarily get with the foods I crave.
Ironically these same little pills that encourage me to ingest food into my body are backing up my bowels, despite regular quaffing of the stool softening and poop-inducing (nice technical term, eh?) medications of Colasce and Sennokot. I've got lots of uncomfortable cramping and movement in the bowel region, but no relief.
And the steroids slightly veered me towards to the path of Bitchy Tina last night. Maybe it was tiredness or lack of a good bowel movement, but I felt more irritated than normal by dinner time (a meal, I incidently skipped).
Other than those semi-mild side effects mentioned above, I've experienced flushed cheeks, restless (but not painful legs), dull eyes with small pupils, a minor, gall-bladder type pain under my right breast and possibly, a small dulling of my tastebuds. Of course, I also have the discomfort of filling up with ascities, which luckily isn't major right now.
But based on my previous, horrible experience with chemo, I'm waiting for the other shoe to drop. Day three (which would be today) used to drop me into a deep, dark well of depression, bone pain and an out-of-body experience. Even thought Dr. W said the side effects tend to appear right after treatment, and both he and the chemo nurse said they were generally pretty mild, I'm afraid to believe it. I don't want to trust this is the worst and then be sucked into the hellish vortex. That's why I'm keeping an open mind, taking small trips, making minimal plans and sticking pretty close to home over the next few days.
But if this is the worst the Carbo/Gemcitibine chemo combination is going to throw at me - with positive, cancer-shrinking results - I'll be thrilled. So keep working my little, black ninjas with the same stealth and pain-free efficiency you've employed so far. I'll send in some Gemcitibine reinforcements on Thursday.
From where I sit right now, the day lays before us with promise. We should all do what we can to get out and enjoy this beautiful Sunday. It's a good day to be alive.
Tina
Friday, November 18, 2011
1/12
The first batallion of lethal, black ninjas got the green light yesterday and were infused into my body. They're sneaky warriors, hiding in the two bags of clear chemotherapy fluid. Now they're lurking in the shadows in my abdomen, of which I'm sure there's many, and sneaking up on those rotten tumours to eradicate them. I hope this first army of super soldiers is large and strong enough to distract the cancer enough so it doesn't have time to produce ascities.
Yesterday's infusion went surprising well. In comparison to the six-hour days I used to endure, my approximately three hours at the cancer centre - waiting, paperwork, set up, infusion, etc. - felt short and sweet.
With the carboplatin/paclitaxel combo I previously received, the paxiltaxol took three to four hours alone to drip into the IV. Then I had to have additional drugs to prevent reactions to it. I got Dexamethasone, Rininidine and Benadryl via IV before the chemo drugs were even started. And because I had an adverse reaction to the taxol on the first dose, the rate of infusion was slowed too. When I had this chemo combination, it was necessary to pack a lunch, drinks, snacks, cards, book and patience.
But with the Carboplatin/Gemcitibine chemo I received yesterday, the IV consisted of saline, Gemcitibine for 30 minutes, saline, Carboplatin for 1 hour, saline and done.
It was also easier because I have a PICC line. No rooting around for veins to cooperate. And because I've had lots of trouble drinking lately, I'm sure I'm dehydrated, which shrinks veins more. So if the nurse would have had to thread a vein for the chemo, I'm sure it would have been an ordeal and involved multiple stabs.
In addition, when the patient has a PICC line, the Gemcitibine doesn't have to be mixed with saline to lessen it's harshness on the veins. So I got the straight drug, which was quicken infusion too.
It was also much quicker to have this treatment done in London instead of Hamilton, which is an 1-1/2 hour drive away. We live a short 20-minute drive to the London cancer centre, so it's in for the chemo and out to do something else with the rest of the day. Not that I really did anything too exciting because I was tired. I laid down but unable to sleep because I was wired from the steroids. Weary but wired seems to be the main side effect so far.
It's ironic, but last night I told Michael I felt better than I had in about a week. I don't know if it's the steroids calming the nausea and making eating a bit easier or the removal of the drainage tube, which I seriously think was starting to make me feel really bad. I'd also like to think the chemotherapy is already starting to work, but that's optimistically unrealistic.
Unfortunately, my belly is swelling with fluid accumulation. It's quite visible now and could get to be a problem. But hopefully, those ninjas will work really quickly and only one (or none) paracentisis draining will be necessary. Of course, I'll keep an eye on it, because it's gets extemely uncomfortable and is hard to hide.
In those first few seconds upon waking this morning, I felt great: No pain or discomfort. But once my body fully awoke, I noticed a slight headache and some minor stomach pain. I also still feel tired despite a decent night's sleep. But if that's the extent of my side effects right now, I'm rocking. But I suspect, I'll feel some more as the day(s) truck on.
Since this is an entirely new chemotherapy for me, I don't know what side effects to expect. I also don't know which I'll still have because of the carboplatin, which also made up part of my last treatment. Will I become a super sniffer again? Will I produce the most smelly, room-clearing farts imaginable? Will Bitchy Tina make an apperance from the steroids I'm taking, even though the dose is much smaller? Will I sink into a deep, dark well? I don't know. And these are the experiences that don't appear on the side effects sheets themselves. I wait and see.
I do know I'll feel tired and will be susceptible to outside infections. To me, that sounds like a great reason to do little cocooning with some books, my bed and a big bottle of hand sanitizer.
I want to say thank you to everyone for all your messages with good wishes yesterday. It's awesome to know I have the support of so many people who love me.
Tina
Yesterday's infusion went surprising well. In comparison to the six-hour days I used to endure, my approximately three hours at the cancer centre - waiting, paperwork, set up, infusion, etc. - felt short and sweet.
With the carboplatin/paclitaxel combo I previously received, the paxiltaxol took three to four hours alone to drip into the IV. Then I had to have additional drugs to prevent reactions to it. I got Dexamethasone, Rininidine and Benadryl via IV before the chemo drugs were even started. And because I had an adverse reaction to the taxol on the first dose, the rate of infusion was slowed too. When I had this chemo combination, it was necessary to pack a lunch, drinks, snacks, cards, book and patience.
But with the Carboplatin/Gemcitibine chemo I received yesterday, the IV consisted of saline, Gemcitibine for 30 minutes, saline, Carboplatin for 1 hour, saline and done.
It was also easier because I have a PICC line. No rooting around for veins to cooperate. And because I've had lots of trouble drinking lately, I'm sure I'm dehydrated, which shrinks veins more. So if the nurse would have had to thread a vein for the chemo, I'm sure it would have been an ordeal and involved multiple stabs.
In addition, when the patient has a PICC line, the Gemcitibine doesn't have to be mixed with saline to lessen it's harshness on the veins. So I got the straight drug, which was quicken infusion too.
It was also much quicker to have this treatment done in London instead of Hamilton, which is an 1-1/2 hour drive away. We live a short 20-minute drive to the London cancer centre, so it's in for the chemo and out to do something else with the rest of the day. Not that I really did anything too exciting because I was tired. I laid down but unable to sleep because I was wired from the steroids. Weary but wired seems to be the main side effect so far.
It's ironic, but last night I told Michael I felt better than I had in about a week. I don't know if it's the steroids calming the nausea and making eating a bit easier or the removal of the drainage tube, which I seriously think was starting to make me feel really bad. I'd also like to think the chemotherapy is already starting to work, but that's optimistically unrealistic.
Unfortunately, my belly is swelling with fluid accumulation. It's quite visible now and could get to be a problem. But hopefully, those ninjas will work really quickly and only one (or none) paracentisis draining will be necessary. Of course, I'll keep an eye on it, because it's gets extemely uncomfortable and is hard to hide.
In those first few seconds upon waking this morning, I felt great: No pain or discomfort. But once my body fully awoke, I noticed a slight headache and some minor stomach pain. I also still feel tired despite a decent night's sleep. But if that's the extent of my side effects right now, I'm rocking. But I suspect, I'll feel some more as the day(s) truck on.
Since this is an entirely new chemotherapy for me, I don't know what side effects to expect. I also don't know which I'll still have because of the carboplatin, which also made up part of my last treatment. Will I become a super sniffer again? Will I produce the most smelly, room-clearing farts imaginable? Will Bitchy Tina make an apperance from the steroids I'm taking, even though the dose is much smaller? Will I sink into a deep, dark well? I don't know. And these are the experiences that don't appear on the side effects sheets themselves. I wait and see.
I do know I'll feel tired and will be susceptible to outside infections. To me, that sounds like a great reason to do little cocooning with some books, my bed and a big bottle of hand sanitizer.
I want to say thank you to everyone for all your messages with good wishes yesterday. It's awesome to know I have the support of so many people who love me.
Tina
Wednesday, November 16, 2011
Bye bye tail
It's been a constant companion for over a month now, but I've finally lost my tail. While that statement may be apropos for a crime novel, it seems a bit odd pertaining to an average person. But then again, I guess I'm not that average.
My tail was my drainage tube and it easily slid out amid a gush of fluid when the doc pulled on it this morning. The stitch came out a couple of days ago, and it was slowly easing its way out of my body anyway, but I wanted the doc to take a look at the area. So I went to the removal appointment this morning instead of having my home care nurse or Michael yank the sucker.
Since the tube wasn't in far enough, I wasn't getting any drainage yesterday. And the stuff that filled the reservoir the day before was bloody. I was concerned about the blood or the chance of infection, especially since the reservoir was starting to smell really funky, but Dr. L (the one who did my surgery at the end of September) didn't seem concerned.
I'm leaking copious amounts of fluid from the hole and need to change the bandage covering it every few hours, but I don't have the annoying appendage to drag around with me any more. Nor will it take up the space between me and Michael in the bed. But it's amazing how I've adapted to its presence because I went to grab the tubing when I got up from a chair the afternoon, only to happily realize it isn't there.
Now my main concern is fluid accumulation in my abdomen. I already know I'm fuller than I should be, but hopefully the ninjas will quickly work to stop the ascities production with the very first dose of chemo tomorrow. My appointment is at 8:15 a.m. and it only takes about 2 hours, so I'll be done by mid morning and ready to face the side effects. I just want to get this process started.
So think of me as you sip your morning beverage tomorrow and root for those cancer fighting ninjas in the chemo. Die cancer die!
Tina
My tail was my drainage tube and it easily slid out amid a gush of fluid when the doc pulled on it this morning. The stitch came out a couple of days ago, and it was slowly easing its way out of my body anyway, but I wanted the doc to take a look at the area. So I went to the removal appointment this morning instead of having my home care nurse or Michael yank the sucker.
Since the tube wasn't in far enough, I wasn't getting any drainage yesterday. And the stuff that filled the reservoir the day before was bloody. I was concerned about the blood or the chance of infection, especially since the reservoir was starting to smell really funky, but Dr. L (the one who did my surgery at the end of September) didn't seem concerned.
I'm leaking copious amounts of fluid from the hole and need to change the bandage covering it every few hours, but I don't have the annoying appendage to drag around with me any more. Nor will it take up the space between me and Michael in the bed. But it's amazing how I've adapted to its presence because I went to grab the tubing when I got up from a chair the afternoon, only to happily realize it isn't there.
Now my main concern is fluid accumulation in my abdomen. I already know I'm fuller than I should be, but hopefully the ninjas will quickly work to stop the ascities production with the very first dose of chemo tomorrow. My appointment is at 8:15 a.m. and it only takes about 2 hours, so I'll be done by mid morning and ready to face the side effects. I just want to get this process started.
So think of me as you sip your morning beverage tomorrow and root for those cancer fighting ninjas in the chemo. Die cancer die!
Tina
Tuesday, November 15, 2011
Tumbling
As you can tell from my posts over the last few days (maybe even weeks), my situation is sliding downhill. In discussions with the homecare nurse last night, Michael says he's really noticed a big change in the past few days. I feel awful almost all the time, and that affects both my body and spirit. I also feel weaker and less able to cope with the physical and emotional aspects of this disease.
And I hate it!
I threw up again this morning, even when I hadn't eaten anything. But I had plenty to vomit, which leads me to believe my body isn't processing food very quickly. I'm upchucking at least every other day, but most of the time it's when I've eaten too much. Now I guess it could be whenever my body feels like it. Sheesh.
I'm praying once I start chemo on Thursday, it'll start to dry up the ascities, stop the pressure on my stomach and make me feel better. I hope it happens quickly, especially since after much circular discussion among various doctors at the hospital yesterday, I now have an appointment to remove my drainage tube tomorrow. While I'll be happy to be rid of the inconvenient - and potentially infection causing - tail, I worry about filling up with fluid. I still drain approximately 300 mL of ascities via that port daily. Once the tube is gone (and before the chemo starts to stop the fluid production) my abdomen will swell and I'll need paracentisis, which is drainage via a long needle and vacuum containers. And it's as yucky as it sounds.
I feel like a stone, sliding down the side of a cliff. The top of the embankment wasn't very steep and the movement was slow. But now the slope's increased and so has my tumble into the abyss. Let's hope for a leveling off soon so I can stop this decent, regain some strength, stamina and focus.
Luckily, through this entire downward spiral, I have the amazing support of a wonderful husband. Difficulties will drive some couples apart, but Michael is right here with me, rubbing my back, cleaning my puke, changing my dressings, holding my hand and stepping up in every way possible. You never know how your partner will react when faced with this kind of situation and I'm so blessed to have one who will care for me - in sickness and health.
I laid in his arms this morning after he rubbed my neck and shoulders to get alleviate a painful headache and knew he'd protect me. I felt weak and yet I could lean on his strength. That's unconditional love and I'm so lucky to be abe to count on it (even when I don't feel I deserve it) from my soulmate.
Tina
And I hate it!
I threw up again this morning, even when I hadn't eaten anything. But I had plenty to vomit, which leads me to believe my body isn't processing food very quickly. I'm upchucking at least every other day, but most of the time it's when I've eaten too much. Now I guess it could be whenever my body feels like it. Sheesh.
I'm praying once I start chemo on Thursday, it'll start to dry up the ascities, stop the pressure on my stomach and make me feel better. I hope it happens quickly, especially since after much circular discussion among various doctors at the hospital yesterday, I now have an appointment to remove my drainage tube tomorrow. While I'll be happy to be rid of the inconvenient - and potentially infection causing - tail, I worry about filling up with fluid. I still drain approximately 300 mL of ascities via that port daily. Once the tube is gone (and before the chemo starts to stop the fluid production) my abdomen will swell and I'll need paracentisis, which is drainage via a long needle and vacuum containers. And it's as yucky as it sounds.
I feel like a stone, sliding down the side of a cliff. The top of the embankment wasn't very steep and the movement was slow. But now the slope's increased and so has my tumble into the abyss. Let's hope for a leveling off soon so I can stop this decent, regain some strength, stamina and focus.
Luckily, through this entire downward spiral, I have the amazing support of a wonderful husband. Difficulties will drive some couples apart, but Michael is right here with me, rubbing my back, cleaning my puke, changing my dressings, holding my hand and stepping up in every way possible. You never know how your partner will react when faced with this kind of situation and I'm so blessed to have one who will care for me - in sickness and health.
I laid in his arms this morning after he rubbed my neck and shoulders to get alleviate a painful headache and knew he'd protect me. I felt weak and yet I could lean on his strength. That's unconditional love and I'm so lucky to be abe to count on it (even when I don't feel I deserve it) from my soulmate.
Tina
Monday, November 14, 2011
Grumpy
Toward the end of last week, I realized I'm tired of being in my own body. I'm weary of my stomach, abdomen or neck hurting. I hate that I can't enjoy food and throw up semi-regularly. I'm frustrated and therefore grumpy. I don't have a lot of energy, initiative or enthusiasm. I'm certainly not a pleasure to be around.
On Friday, my drainage tube stopped working properly. We thought it was a flaw in the reservoir and jumped through hoops to get another one, only to discover that it's not the equipment, it's me. We think the tube emerging from my abdomen has stretched the skin around the insertion area so much, air is escaping and preventing the vacuum from sucking the ascities from my belly. While, I still captured about 300 mL in the reservoir from Friday to Saturday, the flow is now minimal. I woke this morning with ascities all over the front of my pajamas. And I'm uncomfortable. We'll call the interventional radiology department today to see if someone there can help remedy my situation.
If I'm tired of being in my broken body, I can only imagine what those with strokes, MS, Parkinsons or ALS experience. My situation is nothing compared to those individuals. But my physical woes are enough to break me down. I'm so tired of feeling bad. I hope it improves quickly when I start treatment this week.
Tina
On Friday, my drainage tube stopped working properly. We thought it was a flaw in the reservoir and jumped through hoops to get another one, only to discover that it's not the equipment, it's me. We think the tube emerging from my abdomen has stretched the skin around the insertion area so much, air is escaping and preventing the vacuum from sucking the ascities from my belly. While, I still captured about 300 mL in the reservoir from Friday to Saturday, the flow is now minimal. I woke this morning with ascities all over the front of my pajamas. And I'm uncomfortable. We'll call the interventional radiology department today to see if someone there can help remedy my situation.
If I'm tired of being in my broken body, I can only imagine what those with strokes, MS, Parkinsons or ALS experience. My situation is nothing compared to those individuals. But my physical woes are enough to break me down. I'm so tired of feeling bad. I hope it improves quickly when I start treatment this week.
Tina
Friday, November 11, 2011
A different path
Yesterday, I returned to the fork in the road with its choice of two different paths to follow. On Tuesday, I'd chosen one road to journey down, but I second-guessed my selection after only a couple of steps and re-traced them to return to the fork and weigh the two options again.
After conducting Internet research, writing pros and cons lists, and talking with Dr. W, Michael and my sister, I've decided which path to follow for my treatment plan. In my gut, I think it's the way I wanted to proceed, but my logical mind required a thorough assessment of both options before making my decision.
I've chosen to receive the Carboplatin and Gemcitibine chemotherapy combination (as opposed to Carboplatin and Paclitaxel, which is what I've been treated with twice in the past). I asked a bunch of questions during my appointment with Dr. W yesterday afternoon, which only confirmed my gut feeling.
He said my choice seemed a reasonable way to proceed. In fact, the answers to some of my questions prompted him to say, "that would go on your pro list" for choosing Gemcitibine. I'm 95 per cent happy I'm going this route, while five per cent of me wonders if I've made a mistake. But I have to go with my gut and my mind, get going on the treatment and move forward. None of us can always be 100 per cent sure our choices are the right ones, but we have to do our homework and trust our instincts.
So here are the pros and cons of proceeding with the Gemcitibine/Carboplatin combination:
PROS
(Of course, this is the flip side of the coin and the pros for using Paclitaxel.)
I'm happy to have options and to be moving forward. The day I receive chemo next week will probably change. I'm trying to schedule my appointment so the really bad side effects hit me while my kids are at school. With the Paclitaxel/Carboplatin treatment, those occured on days three to six. Dr. W said the Gemcitibine/Carboplatin side effects tend to hit right away. So I've asked for a Wednesday appointment so I can be through the tough stuff before spending the weekends with my kids. For now, I'll leave most of next week open so when I get the phone call on Monday confirming my appointment, I'll be ready.
Oh, and just to answer Sandra's comment on yesterday's blog: I have a tube in my abdomen through which the ascities drains into a collection reservoir. I empty the reservoir regularly because it collects approximately 300+ mL of ascities a day. If I didn't drain this way, my abdomen would continutally fill up with the fluid produced by the tumours in my abdomen, which is extremely uncomfortable. When too much ascities has built up, paracentisis is required (sticking a long needle into the abdominal cavity and siphoning off the accumulated ascities). The proccesses of filling up and getting drained are both extremely uncomfortable, and considering the amount of ascities my cancer produces daily, I'd have to have paracentisis every week, which comes with its own risks. The drainage tube (with which I have a love/hate relationship) eliminates the need for paracentisis. Dr. W withdrew ascities directly from my reservoir to send to the lab - a painless procedure.
I know today's blog conveyed lots of semi-complicated information. Please feel free to contact me if you have questions or need clarification. I now know far more about ovarian cancer, its treatments, and the ups and downs of the journey with this disease than I ever dreamed.
But at least I'm still here to educate myself - and as a result - you too.
Tina
After conducting Internet research, writing pros and cons lists, and talking with Dr. W, Michael and my sister, I've decided which path to follow for my treatment plan. In my gut, I think it's the way I wanted to proceed, but my logical mind required a thorough assessment of both options before making my decision.
I've chosen to receive the Carboplatin and Gemcitibine chemotherapy combination (as opposed to Carboplatin and Paclitaxel, which is what I've been treated with twice in the past). I asked a bunch of questions during my appointment with Dr. W yesterday afternoon, which only confirmed my gut feeling.
He said my choice seemed a reasonable way to proceed. In fact, the answers to some of my questions prompted him to say, "that would go on your pro list" for choosing Gemcitibine. I'm 95 per cent happy I'm going this route, while five per cent of me wonders if I've made a mistake. But I have to go with my gut and my mind, get going on the treatment and move forward. None of us can always be 100 per cent sure our choices are the right ones, but we have to do our homework and trust our instincts.
So here are the pros and cons of proceeding with the Gemcitibine/Carboplatin combination:
PROS
- Gentler side effects - less nausea, no neuropathy (tingling and loss of feeling in hands and feet), etc.
- No need to take steroids to counteract the nausea - I'm still leery of steroids considering they could have caused the perforated bowel and resulting surgery. And if I don't take steroids, we can avoid the appearance of Bitchy Tina, which is always a good thing.
- I've tried the Carboplatin/Paclitaxel combination before and I know it works. But perhaps this chemo combo will work better and give me longer between reoccurences.
- Over time, cancer's response to Paclitaxel becomes less effective. By not using it this round of treatment, I wouldn't be diminishing its effectiveness to use in the future.
- Clinical trials I've heard about often use Paclitaxel by itself or in combination with another chemotherapy and a clinical trial drug. If my cancer develops a resistence to it, these types of clinical trials won't be viable treatment options in the future.
- Another way to treat ovarian cancer involves using Paclitaxel by itself via weekly infusions. It's been proven to be effective and less toxic. Again, if my cancer is resistent to this chemo, I wouldn't be able to pursue this option.
- There's a better synergy with Gemcitibine and Carboplatin in its cancer fighting abilities. So they work together more effectively. I also read on the Internet, Gemcitibine can also enhance the effectiveness of drugs used previously to fight the cancer. So I guess if there are residual drugs still in my body, Gemcitibine can use them to help fight my cancer cells.
- Carboplatin is infused over 1-1/2 hours, Gemcitibine over 30 minutes, which means I'd be able to receive my treatment in about two hours. In the past, the Carbo/Taxol combination had me in the cancer suite for five to six hours. This option significantly cuts down on my time in the cancer centre. (But see point 5 on the cons list.)
- Gemcitibine is tolerable over a longer period of time than Paclitaxel. Usually by the end of six treatments, women must stop using Paclitaxel because the toxic side effects are too bad. While my treatment regime with Gemcitibine would be for the same six cycles, I could probably keep taking Gemcitibine for longer, if needed. (Of course, this is only if I tolerate the drug well. In approximately five per cent of patients, the side effects are intolerable.)
- Over time, patients develop a resistence to Carboplatin, which eliminates some treatment options. Dr. W said some research indicates Taxol increases the risk of developing Carboplatin resistence sooner. I want to be able to use Carboplatin as one of the chemotherapy agents as long as possible.
- I wouldn't lose my hair. Yup, vain Tina saves this pro for the end. While I've read reports of thinning hair and the side effect sheets talk about loss of hair, I've got a far better chance of keeping my silky strands with this treatment option.
(Of course, this is the flip side of the coin and the pros for using Paclitaxel.)
- I've never used Gemcitibine before and I don't know if my cancer will respond to it.
- I also don't know which side-effects I'll experience from this chemotherapy.
- Side effects could include a reduction in red and white blood cells, increasing the risk of infection, anemia and bleeding. As a result, I may need a blood transfusion. Others side effects include: flu-like symptions (fever, chills, aches), fatigue, mild nausea, skin rash, vomitting and lack of appetite.
- To reduce the toxicity of the Gemcitibine/Carboplatin combination, the Carbo dose must be reduced. Dr W said he doesn't think this reduces the effectiveness of this treatment option, but it does provide less of the cancer-killing Carboplatin. (Or perhaps less Carbo slows down the time before the body develops a resistence to this drug.)
- The treatments are more often. I'd head to the cancer centre week one to receive the combination of Carbo and Gemcitibine, the following week, I'd go again for a 30-minute infusion of Gemcitibine, then I'd have a week to recover before starting all again. So I'd have to head to the cancer centre for treatment twice in a three-week period; albeit for shorter periods of time. (See 8 on the pros list.)
- Carboplatin and Paclitaxel is the gold star standard treatment for ovarian cancer. They're considered the big guns. Am I making a mistake not pulling out the best known treatment for this reoccurence?
- This chemo combo worked for me before, so why not set it lose on the cancer again?
- I'm familiar with the side effects of Carboplatin and Paclitaxel, know when to expect them and generally know when I'll start to feel better again. I know how bad they are and how to get through them. Gemcitibine is an unknown, but all the literature says its side effects are gentler. (This is a wishy-washy con, I know, but I wanted to put it somewhere.)
I'm happy to have options and to be moving forward. The day I receive chemo next week will probably change. I'm trying to schedule my appointment so the really bad side effects hit me while my kids are at school. With the Paclitaxel/Carboplatin treatment, those occured on days three to six. Dr. W said the Gemcitibine/Carboplatin side effects tend to hit right away. So I've asked for a Wednesday appointment so I can be through the tough stuff before spending the weekends with my kids. For now, I'll leave most of next week open so when I get the phone call on Monday confirming my appointment, I'll be ready.
Oh, and just to answer Sandra's comment on yesterday's blog: I have a tube in my abdomen through which the ascities drains into a collection reservoir. I empty the reservoir regularly because it collects approximately 300+ mL of ascities a day. If I didn't drain this way, my abdomen would continutally fill up with the fluid produced by the tumours in my abdomen, which is extremely uncomfortable. When too much ascities has built up, paracentisis is required (sticking a long needle into the abdominal cavity and siphoning off the accumulated ascities). The proccesses of filling up and getting drained are both extremely uncomfortable, and considering the amount of ascities my cancer produces daily, I'd have to have paracentisis every week, which comes with its own risks. The drainage tube (with which I have a love/hate relationship) eliminates the need for paracentisis. Dr. W withdrew ascities directly from my reservoir to send to the lab - a painless procedure.
I know today's blog conveyed lots of semi-complicated information. Please feel free to contact me if you have questions or need clarification. I now know far more about ovarian cancer, its treatments, and the ups and downs of the journey with this disease than I ever dreamed.
But at least I'm still here to educate myself - and as a result - you too.
Tina
Thursday, November 10, 2011
C day - next Thursday
I got the phone call yesterday and my first chemo treatment is next Thursday. Woo hoo! (Although it seems kind of odd to be so excited about having toxic chemicals injected into my body.)
I asked for Monday or Friday, but because of the Remembrance Day holiday, appointments are backed up. So, my first treatment will be next Thursday, with subsequent ones on Fridays. Why the day-of-the-week request? Because I know from experience I generally feel okay for two days and then fall into a black hole for a few days, where I experience the pain, lethargy and disinterest. When taking steroids to combat nausea, "Bitchy Tina" makes an appearance on about day five post-treatment. If my chemo is on a Friday, those black days fall on weekdays, when I'm alone most of the time. I can moan as much as I want without worrying others and don't have to make an effort be civil. It takes enough energy just to deal with the side effects, let alone feel as though I have to step up and be social.
As for the chemotherapy drugs I'm going to receive, the decision is still up in the air. When I wrote my blog yesterday comparing the carboplatin/paclitaxel treatment versus the carboplatin/gemcitibine one, I noticed I was emphasizing the good things about Gemcitibine - less toxicity, less nausea = no need to take steroids, not losing my hair (yes, vain Tina is talking here) - and I wondered why I wasn't choosing that option if the effectiveness statistics tend to be about the same.
Then my sister, smartie pants that she is, asked a good question, "If I take the paclitaxel again and this is the last time it's effective, won't that exclude me from future clinical trials that involve this chemotherapy drug?" There's no guarantee it will stop being effective if I do receive it, nor is there a promise it will work this time. I was contemplating calling Dr.W yesterday afternoon when he called me. Fortuitous timing for me because getting through to the right person at the cancer centre can be a challenge. We talked through Angie's question and again contemplated the pros and cons of each drug. I'm also meeting with him this afternoon, where we'll determine which chemo I'm going to start next week.
I'm heading to the cancer clinic again today to provide some of my ascities for the Translation Ovarian Cancer Research Group to use for its research work. I'm more than happy to give them as much as the researchers want and hope using it in studies leads to interesting discoveries. What's vile to me is valuable to them. And I'll do whatever I can to facilitate research or raise awareness of this awful disease.
Speaking of awareness, the Run for Ovarian Cancer got some media coverage at the cheque presentation last week. As we work towards the $1 million goal for the 2012 run, awareness of the event and the disease is extremely important. As a survivor, I was interviewed and quoted in the article. Yup, it's part of my 15 minutes of fame. While I would have preferred to be in a situation where I'd talk about more pleasant subjects (perhaps me winning the lottery or becoming a famous author), I guess I'm destined to use these 15 minutes to talk about ovarian cancer. If it helps fund research or make more people aware of the devastating nature of this silent stalker, it's the least I can do.
Tina
I asked for Monday or Friday, but because of the Remembrance Day holiday, appointments are backed up. So, my first treatment will be next Thursday, with subsequent ones on Fridays. Why the day-of-the-week request? Because I know from experience I generally feel okay for two days and then fall into a black hole for a few days, where I experience the pain, lethargy and disinterest. When taking steroids to combat nausea, "Bitchy Tina" makes an appearance on about day five post-treatment. If my chemo is on a Friday, those black days fall on weekdays, when I'm alone most of the time. I can moan as much as I want without worrying others and don't have to make an effort be civil. It takes enough energy just to deal with the side effects, let alone feel as though I have to step up and be social.
As for the chemotherapy drugs I'm going to receive, the decision is still up in the air. When I wrote my blog yesterday comparing the carboplatin/paclitaxel treatment versus the carboplatin/gemcitibine one, I noticed I was emphasizing the good things about Gemcitibine - less toxicity, less nausea = no need to take steroids, not losing my hair (yes, vain Tina is talking here) - and I wondered why I wasn't choosing that option if the effectiveness statistics tend to be about the same.
Then my sister, smartie pants that she is, asked a good question, "If I take the paclitaxel again and this is the last time it's effective, won't that exclude me from future clinical trials that involve this chemotherapy drug?" There's no guarantee it will stop being effective if I do receive it, nor is there a promise it will work this time. I was contemplating calling Dr.W yesterday afternoon when he called me. Fortuitous timing for me because getting through to the right person at the cancer centre can be a challenge. We talked through Angie's question and again contemplated the pros and cons of each drug. I'm also meeting with him this afternoon, where we'll determine which chemo I'm going to start next week.
I'm heading to the cancer clinic again today to provide some of my ascities for the Translation Ovarian Cancer Research Group to use for its research work. I'm more than happy to give them as much as the researchers want and hope using it in studies leads to interesting discoveries. What's vile to me is valuable to them. And I'll do whatever I can to facilitate research or raise awareness of this awful disease.
Speaking of awareness, the Run for Ovarian Cancer got some media coverage at the cheque presentation last week. As we work towards the $1 million goal for the 2012 run, awareness of the event and the disease is extremely important. As a survivor, I was interviewed and quoted in the article. Yup, it's part of my 15 minutes of fame. While I would have preferred to be in a situation where I'd talk about more pleasant subjects (perhaps me winning the lottery or becoming a famous author), I guess I'm destined to use these 15 minutes to talk about ovarian cancer. If it helps fund research or make more people aware of the devastating nature of this silent stalker, it's the least I can do.
Tina
Wednesday, November 9, 2011
Moving forward
We finally have a plan!
It's not exactly the course of action I was seeking because that would have involved the added kick of a clinical trial drug, but I'm happy to be moving forward. Next week I start carboplatin and paxlitaxel chemotherapy. These are the same two drugs I've taken for my past two chemotherapy treatments, and they're considered the standard for treating ovarian cancer.
We're proceeding with these two drugs because they've worked in the past to kill the cancer, and the docs in both London and Hamilton believe it has a great chance of working again, especially since I have the BRCA gene mutation. Research shows ovarian cancer in those with this gene mutation tends to respond positively to chemotherapy treatment (positively for the patient, but not for the cancer cells because they die). My London oncologist did point out this responsiveness tends to slow down at some point, but he's optimistic the chemo will work again this time.
Yesterday, I had an appointment with Dr. W, my London oncologist who also coordinates clinical trials. He patiently discussed the pros and cons of the various treatment options available to me - the ones Dr. H suggested, as well as a few more of his own. While two clinical trial drugs sound promising - the P53 inhibitor and a different PARP inhibitor - both studies are in the approval phase with no clear sense of when they're going to start. It could be a couple of weeks or a couple of months.
I'd prefer to take one of these in conjunction with my chemo, but I can't wait. I feel like I've been stagnant long enough, allowing the cancer to grow inside me. I have to start sending my stealthy ninja warriors (aka the chemo) back in to hack, slice and defeat those cancer cells. Luckily, I found out yesterday that while I have "lots of cancer" inside me, the CT scan reveals it's still on the surface of organs and hasn't penetrated any of them. So I need to get some chemo in there, shrink those tumours and distract them from trying to invade new organs.
While Dr. W and I decided to go with the carboplatin and paxlitaxel combination, I also had the option of trying a different chemotherapy option with approximately the same success rate - carboplatin and gemcitibine. Paclitaxel is a more toxic chemotherapy, producing nausea, neuropathy (tingling and loss of feeling in hands and feet), joint and muscle pain, etc. Gentle Gem, has fewer of the nasty side effects, although its more common ones are fever, joint aches and rash. Approximately five per cent of patients find the Gem's side effects intolerable.
Part of me would like to go the Gemcitibine route because of these gentler side effects and because it won't necessarily make all my hair fall out. I know, it's a stupid reason and one I didn't really use to make a decision, but it'd be a bonus.
Another plus would be the ability to skip the pre-chemo steroids to prevent nausea. Dr. W said they may not be necessary with the Gemcitibine. Given the steroids may have caused the ulcer (if that's what I had), I'm a little leery of them now. Although when I talked to the pharmacist during my stint in the hospital, he said a couple of big doses, which is what I'd take with chemo, are more easily tolerated than a small dose over a longer period of time. But they still make me nervous.
Another option Dr. W discussed was coming in for a weekly dose of Paclitaxel chemotherapy. Research shows it tends to be better tolerated and works well to combat cancer. But I'd have to be on steroids and go into the cancer centre every week with this treatment regime. I turn into Bitchy Tina on steroids, so having this unpleasant side effect weekly would be hard to tolerate. I can't stand myself when this happens and I feel extremely sorry for my family.
The weekly Paclitaxel treatments are currently being studied in conjunction with a clinical trial drug, but I don't even qualify for this study because I've had surgery within the past six months. In fact, Dr. W said I may be excluded from some future clinical trials because of my bowel perforation. It disappoints me enormously that some potentially life-saving treatments may not be available to me now.
So I considered all these options and the recommendations of Dr. W and Dr. H, to determine my plan of attack. I'm going to go with the paciltaxel and carboplatin chemotherapy. I think it's the best choice from the options available to me today, despite its potential toxicity. I've also been through the chemo combination before and know what to expect. It's not pleasant, but I know I can get through it.
Now I'll anxiously wait by the phone for the call telling me which day I'll start treatment next week. Believe me, I tried to push for an appointment in the chemo suite for this week, but hospital staff are off because of Remembrance Day on Friday, so no such luck. Perhaps that's for the best because starting next week means I should feel okay for Christmas. (Yes, I've examined the calendar in detail.)
By going with this treatment option, we'll keep the gemcitibine combination and all the other potential treatment options in our back pockets to use if this treatment doesn't prove effective this time around or in the event of reoccurence. But hopefully, when that happens, the timing will be right for me to participate in another clinical trial that may prove effective against this aggressive and deadly disease.
Tina
It's not exactly the course of action I was seeking because that would have involved the added kick of a clinical trial drug, but I'm happy to be moving forward. Next week I start carboplatin and paxlitaxel chemotherapy. These are the same two drugs I've taken for my past two chemotherapy treatments, and they're considered the standard for treating ovarian cancer.
We're proceeding with these two drugs because they've worked in the past to kill the cancer, and the docs in both London and Hamilton believe it has a great chance of working again, especially since I have the BRCA gene mutation. Research shows ovarian cancer in those with this gene mutation tends to respond positively to chemotherapy treatment (positively for the patient, but not for the cancer cells because they die). My London oncologist did point out this responsiveness tends to slow down at some point, but he's optimistic the chemo will work again this time.
Yesterday, I had an appointment with Dr. W, my London oncologist who also coordinates clinical trials. He patiently discussed the pros and cons of the various treatment options available to me - the ones Dr. H suggested, as well as a few more of his own. While two clinical trial drugs sound promising - the P53 inhibitor and a different PARP inhibitor - both studies are in the approval phase with no clear sense of when they're going to start. It could be a couple of weeks or a couple of months.
I'd prefer to take one of these in conjunction with my chemo, but I can't wait. I feel like I've been stagnant long enough, allowing the cancer to grow inside me. I have to start sending my stealthy ninja warriors (aka the chemo) back in to hack, slice and defeat those cancer cells. Luckily, I found out yesterday that while I have "lots of cancer" inside me, the CT scan reveals it's still on the surface of organs and hasn't penetrated any of them. So I need to get some chemo in there, shrink those tumours and distract them from trying to invade new organs.
While Dr. W and I decided to go with the carboplatin and paxlitaxel combination, I also had the option of trying a different chemotherapy option with approximately the same success rate - carboplatin and gemcitibine. Paclitaxel is a more toxic chemotherapy, producing nausea, neuropathy (tingling and loss of feeling in hands and feet), joint and muscle pain, etc. Gentle Gem, has fewer of the nasty side effects, although its more common ones are fever, joint aches and rash. Approximately five per cent of patients find the Gem's side effects intolerable.
Part of me would like to go the Gemcitibine route because of these gentler side effects and because it won't necessarily make all my hair fall out. I know, it's a stupid reason and one I didn't really use to make a decision, but it'd be a bonus.
Another plus would be the ability to skip the pre-chemo steroids to prevent nausea. Dr. W said they may not be necessary with the Gemcitibine. Given the steroids may have caused the ulcer (if that's what I had), I'm a little leery of them now. Although when I talked to the pharmacist during my stint in the hospital, he said a couple of big doses, which is what I'd take with chemo, are more easily tolerated than a small dose over a longer period of time. But they still make me nervous.
Another option Dr. W discussed was coming in for a weekly dose of Paclitaxel chemotherapy. Research shows it tends to be better tolerated and works well to combat cancer. But I'd have to be on steroids and go into the cancer centre every week with this treatment regime. I turn into Bitchy Tina on steroids, so having this unpleasant side effect weekly would be hard to tolerate. I can't stand myself when this happens and I feel extremely sorry for my family.
The weekly Paclitaxel treatments are currently being studied in conjunction with a clinical trial drug, but I don't even qualify for this study because I've had surgery within the past six months. In fact, Dr. W said I may be excluded from some future clinical trials because of my bowel perforation. It disappoints me enormously that some potentially life-saving treatments may not be available to me now.
So I considered all these options and the recommendations of Dr. W and Dr. H, to determine my plan of attack. I'm going to go with the paciltaxel and carboplatin chemotherapy. I think it's the best choice from the options available to me today, despite its potential toxicity. I've also been through the chemo combination before and know what to expect. It's not pleasant, but I know I can get through it.
Now I'll anxiously wait by the phone for the call telling me which day I'll start treatment next week. Believe me, I tried to push for an appointment in the chemo suite for this week, but hospital staff are off because of Remembrance Day on Friday, so no such luck. Perhaps that's for the best because starting next week means I should feel okay for Christmas. (Yes, I've examined the calendar in detail.)
By going with this treatment option, we'll keep the gemcitibine combination and all the other potential treatment options in our back pockets to use if this treatment doesn't prove effective this time around or in the event of reoccurence. But hopefully, when that happens, the timing will be right for me to participate in another clinical trial that may prove effective against this aggressive and deadly disease.
Tina
Tuesday, November 8, 2011
Life and death
When I read the newspaper, I always peruse the obituaries. I've been doing it for years now to see if I know anyone (or perhaps their parents). It must be my stage of life. Since my cancer diagnosis, I also look at the age of the people who died. If they're young(ish), I try to determine the cause, which is often discernable by the donation requests for a specific charity.
On the weekend, I was happy (and that's probably the wrong word) to note only one listing announced the death of a young man who died in a car accident. The rest were for individuals who died in their late 70s, 80s, 90s and beyond.
I know my perspective is tainted by cancer, but I'd be thrilled to make it to age 75 plus. That's 30 more years of living and experiencing all the world has to offer. It's watching my children grow up and perhaps witnessing the birth of some grandchildren. Retiring, senior-citizen curling, living in Port Franks, empty-nest syndrome with my honey and travel would fit nicely into those 30 years.
But this aggressively persistent cancer has me mulling over the wording for my own obituary. I've been planning to write it since my surgery and too-close-for-comfort brush with death, but I've been procrastinating. The words come to me easily, so I'm not sure why it's so difficult to open up a Word document and simply type them up. Maybe it's the concrete nature of having a formal obituary.
Ironically, I had an appointment with a friend who works at a funeral home scheduled for the day after my surgery. I'd planned to sit down, talk about funeral options, look at the caskets, talk about the services and make my final arrangements. Since I was recovering in the hospital, I obviously didn't make it. But it's one of those items, like the obituary, that's on my to-do list. My planner characteristics are coming through when I'm concerned about an event that will take place after I'm dead. In reality, I don't want to leave the responsibility to those who will be filled with grief when I die. A little silly, I know, but that's just me.
I'm not talking about this to be morbid or sad, but to let you know what fills my brain some days. I know it's weird to think about one's funeral, what it would be like and who would attend, but I think those who suffer serious health issues (or perhaps get to a certain age) entertain similar thoughts.
We're all marching towards death because it's an inevitable part of living. Just remember, this is one journey where it's not about reaching the finish line. Instead it's about the activities that fill those days, hours and minutes that make up a life. It's filling the time with wonderful people and activities, creating memories that will live long after we leave this earth.
Go out there and live!
Tina
On the weekend, I was happy (and that's probably the wrong word) to note only one listing announced the death of a young man who died in a car accident. The rest were for individuals who died in their late 70s, 80s, 90s and beyond.
I know my perspective is tainted by cancer, but I'd be thrilled to make it to age 75 plus. That's 30 more years of living and experiencing all the world has to offer. It's watching my children grow up and perhaps witnessing the birth of some grandchildren. Retiring, senior-citizen curling, living in Port Franks, empty-nest syndrome with my honey and travel would fit nicely into those 30 years.
But this aggressively persistent cancer has me mulling over the wording for my own obituary. I've been planning to write it since my surgery and too-close-for-comfort brush with death, but I've been procrastinating. The words come to me easily, so I'm not sure why it's so difficult to open up a Word document and simply type them up. Maybe it's the concrete nature of having a formal obituary.
Ironically, I had an appointment with a friend who works at a funeral home scheduled for the day after my surgery. I'd planned to sit down, talk about funeral options, look at the caskets, talk about the services and make my final arrangements. Since I was recovering in the hospital, I obviously didn't make it. But it's one of those items, like the obituary, that's on my to-do list. My planner characteristics are coming through when I'm concerned about an event that will take place after I'm dead. In reality, I don't want to leave the responsibility to those who will be filled with grief when I die. A little silly, I know, but that's just me.
I'm not talking about this to be morbid or sad, but to let you know what fills my brain some days. I know it's weird to think about one's funeral, what it would be like and who would attend, but I think those who suffer serious health issues (or perhaps get to a certain age) entertain similar thoughts.
We're all marching towards death because it's an inevitable part of living. Just remember, this is one journey where it's not about reaching the finish line. Instead it's about the activities that fill those days, hours and minutes that make up a life. It's filling the time with wonderful people and activities, creating memories that will live long after we leave this earth.
Go out there and live!
Tina
Monday, November 7, 2011
Recovering but. . .
I'm slowly recovering from my surgery that unceremoniously took place 5-1/2 weeks ago. My incision and drainage tube sites have healed up nicely and my stamina is slowly returning. I actually have small periods of time when my stomach doesn't hurt and there are days when I don't reach for the bottle of Tylenol (I rely on a dose or two most days to take the edge off).
But I think the cancer is wreaking havoc on some of my internal systems. In fact, it may be contributing to my stomach discomfort and causing rib pain. While my capacity to eat has improved, I think the cancer is pressing on my stomach, causing pain when I eat too much. I've also started throwing up at night when I feel too full. I've vomited three times in the past four days. It's very unpleasant, but I feel so much better afterwards. While this may be an effective weight-loss method, I certainly don't want this to become a way of life for me. I'd rather be a fat foodie with no vomiting issues, thank you very much.
While I'm grumbling, I'd better throw in a few complaints about the long drainage tube and collection reservoir I drag around with me everywhere. The tubing is as tall as I am (a statueque five feet), which is impossible to hide within my clothing, so I carry around a pretty red bag with a ladybug on it to hide this medical paraphenalia. I shower, sleep, cook, shop, go to appointments and walk with the whole kit and caboodle.
It's easy to get the tubing caught, which pulls on the insertion site in my abdomen. The aggravating tube gets clogged and comes undone (last night it did that in bed, creating a soggy little mess). I worry about keeping it sterile to prevent infection. It's also pulling on my skin at the insertion site to create a bigger hole through which ascities can seep when the tube gets clogged. I'll be very happy when the treatment stops the cancer from creating ascities and I can get rid of this contraption. I'm sure it will be very freeing.
And I may as well throw in another minor little complaint while I'm whining: the area under the bandage around my PICC line gets extremely itchy - and I can't scratch it properly. Ugh!
Behind all this complaining, I'm really worried. I'm scared that even when I start chemotherapy, and the ascities dries up and cancer shrinks, my body won't go back to "normal." By that I mean being able to eat a decent meal, drink water, coffee and maybe even alcohol without discomfort, and enjoy a pain-free day. It also means not having tubes snaking from my body.
I know I'll have the chemo-related side effects and the resulting bad weeks, but I hope to also be able to once again experience the good weeks where I feel as though I'm playing hooky from work because I feel so well. I know I've said this before, but I'm really afraid this is as good as it gets from this point forward, and that makes me angry.
I'm furious this stupid disease is stealing time. It's sucking up happiness from me and my family. It's robbing me of strength and peace. Regularly, when someone mentions an event in the future, I wonder if I'll be around for it. I watch older people on the street and lament I'll probably never know what that feels like. I hear about the burdens of old age and give a sad, little cheer I won't have to worry about them.
I fret about the future of my wonderful husband and family. I want to celebrate all the milestones of my children and grow old with Michael, but statistics scream I probably won't be. I want to have hope, strength and determination, but some days (obviously) I don't. The burden of this disease is a heavy weight and sometimes it's hard to be positive and believe.
I'm sorry I'm starting this week out with a semi-depressing blog. It is a beautiful day and I'm sure my mood will improve, but this morning, I'm tired of all the crap and needed to vent a bit. Thanks for listening.
Tina
But I think the cancer is wreaking havoc on some of my internal systems. In fact, it may be contributing to my stomach discomfort and causing rib pain. While my capacity to eat has improved, I think the cancer is pressing on my stomach, causing pain when I eat too much. I've also started throwing up at night when I feel too full. I've vomited three times in the past four days. It's very unpleasant, but I feel so much better afterwards. While this may be an effective weight-loss method, I certainly don't want this to become a way of life for me. I'd rather be a fat foodie with no vomiting issues, thank you very much.
While I'm grumbling, I'd better throw in a few complaints about the long drainage tube and collection reservoir I drag around with me everywhere. The tubing is as tall as I am (a statueque five feet), which is impossible to hide within my clothing, so I carry around a pretty red bag with a ladybug on it to hide this medical paraphenalia. I shower, sleep, cook, shop, go to appointments and walk with the whole kit and caboodle.
It's easy to get the tubing caught, which pulls on the insertion site in my abdomen. The aggravating tube gets clogged and comes undone (last night it did that in bed, creating a soggy little mess). I worry about keeping it sterile to prevent infection. It's also pulling on my skin at the insertion site to create a bigger hole through which ascities can seep when the tube gets clogged. I'll be very happy when the treatment stops the cancer from creating ascities and I can get rid of this contraption. I'm sure it will be very freeing.
And I may as well throw in another minor little complaint while I'm whining: the area under the bandage around my PICC line gets extremely itchy - and I can't scratch it properly. Ugh!
Behind all this complaining, I'm really worried. I'm scared that even when I start chemotherapy, and the ascities dries up and cancer shrinks, my body won't go back to "normal." By that I mean being able to eat a decent meal, drink water, coffee and maybe even alcohol without discomfort, and enjoy a pain-free day. It also means not having tubes snaking from my body.
I know I'll have the chemo-related side effects and the resulting bad weeks, but I hope to also be able to once again experience the good weeks where I feel as though I'm playing hooky from work because I feel so well. I know I've said this before, but I'm really afraid this is as good as it gets from this point forward, and that makes me angry.
I'm furious this stupid disease is stealing time. It's sucking up happiness from me and my family. It's robbing me of strength and peace. Regularly, when someone mentions an event in the future, I wonder if I'll be around for it. I watch older people on the street and lament I'll probably never know what that feels like. I hear about the burdens of old age and give a sad, little cheer I won't have to worry about them.
I fret about the future of my wonderful husband and family. I want to celebrate all the milestones of my children and grow old with Michael, but statistics scream I probably won't be. I want to have hope, strength and determination, but some days (obviously) I don't. The burden of this disease is a heavy weight and sometimes it's hard to be positive and believe.
I'm sorry I'm starting this week out with a semi-depressing blog. It is a beautiful day and I'm sure my mood will improve, but this morning, I'm tired of all the crap and needed to vent a bit. Thanks for listening.
Tina
Friday, November 4, 2011
All for research
It was, literally, a big cheque and the number on it - $120,600 - was a significant amount. Thanks to the hard work of all those involved in the Run for Ovarian Cancer, that money will support ovarian cancer research in London. Woo hoo!
I attended the cheque presentation/celebratory event last night at the London Regional Cancer Centre. The event left me exhilerated, and a little exhausted. Yet I couldn't fall asleep last night because my mind kept replaying snippets of the evening.
Several run team captains and family members of women with or who succumbed to ovarian cancer attended the event, along with the hardworking members of the organizing committee, the generous sponsors, the brilliant doctors and researchers and gracious representatives from the London Health Sciences Foundation.
I gave a little speech to the group about my experience with ovarian cancer and the clinical trials with which I've been involved. I also shared my story with two reporters covering the event. Apparently, many women don't want to talk about their journey with this cancer, but I welcome any opportunity to share if it means better awareness or more research. Unlike some other cancers that have lots of publicity and a famous spokesperson, ovarian cancer remains in the shadows of the spotlight and therefore doesn't get the same degree of funding or attention. If my incessant little voice can increase the cause's awareness, I'll talk until I'm hoarse. I may not be famous - and I'm a little shy and introverted - but I'll do what I can.
Last night, the attendees had the opportunity to tour the research labs and learn about the exciting work of the scientists. Their focus is treating ovarain cancer, especially in its later stages, which is the state of the disease when many women are diagnosed. I love hearing about the avenues they're exploring and the collaboration with other cancer research. It gives me hope a better solution is around the corner. As a doctor emphasized last night, it's about giving those with ovarian cancer more time to enjoy life. That means success.
Several people told me last night they read my blog and follow my story. I was buoyed by all the support and well wishes. Many also expressed gratitude for sharing my experiences, both via my blog and my little speech.
A researcher shared he gains insight from my blog into what a patient experiences every day when dealing with ovarian cancer and the issues important to her. He gave me an example: If someone could figure out a way to stop ascities production, it would improve quality of life. My reaction was an emphatic, "Yes!" But unfortunately, he isn't aware of any research going on in that area. Yet insights like this can be extremely valuable to those working at the laboratory workbenches.
Last night's celebration made me excited about the 2012 run, it's 10th anniversary. The event's goal is to raise $160,000, to bring the overall total to $1 million for ovarian cancer research. Wow! While this fundraising target is aggressive, it's achievable with hard work and dedication; something those involved and participate in this event have in abundance. Lace up your running shoes and get fundraising early; we've got an exciting goal to reach.
Tina
I attended the cheque presentation/celebratory event last night at the London Regional Cancer Centre. The event left me exhilerated, and a little exhausted. Yet I couldn't fall asleep last night because my mind kept replaying snippets of the evening.
Several run team captains and family members of women with or who succumbed to ovarian cancer attended the event, along with the hardworking members of the organizing committee, the generous sponsors, the brilliant doctors and researchers and gracious representatives from the London Health Sciences Foundation.
I gave a little speech to the group about my experience with ovarian cancer and the clinical trials with which I've been involved. I also shared my story with two reporters covering the event. Apparently, many women don't want to talk about their journey with this cancer, but I welcome any opportunity to share if it means better awareness or more research. Unlike some other cancers that have lots of publicity and a famous spokesperson, ovarian cancer remains in the shadows of the spotlight and therefore doesn't get the same degree of funding or attention. If my incessant little voice can increase the cause's awareness, I'll talk until I'm hoarse. I may not be famous - and I'm a little shy and introverted - but I'll do what I can.
Last night, the attendees had the opportunity to tour the research labs and learn about the exciting work of the scientists. Their focus is treating ovarain cancer, especially in its later stages, which is the state of the disease when many women are diagnosed. I love hearing about the avenues they're exploring and the collaboration with other cancer research. It gives me hope a better solution is around the corner. As a doctor emphasized last night, it's about giving those with ovarian cancer more time to enjoy life. That means success.
Several people told me last night they read my blog and follow my story. I was buoyed by all the support and well wishes. Many also expressed gratitude for sharing my experiences, both via my blog and my little speech.
A researcher shared he gains insight from my blog into what a patient experiences every day when dealing with ovarian cancer and the issues important to her. He gave me an example: If someone could figure out a way to stop ascities production, it would improve quality of life. My reaction was an emphatic, "Yes!" But unfortunately, he isn't aware of any research going on in that area. Yet insights like this can be extremely valuable to those working at the laboratory workbenches.
Last night's celebration made me excited about the 2012 run, it's 10th anniversary. The event's goal is to raise $160,000, to bring the overall total to $1 million for ovarian cancer research. Wow! While this fundraising target is aggressive, it's achievable with hard work and dedication; something those involved and participate in this event have in abundance. Lace up your running shoes and get fundraising early; we've got an exciting goal to reach.
Tina
Thursday, November 3, 2011
14
In some ways, it feels like only a few short years since Michael and I welcomed our adorable little son into our lives. Yet today, he turns 14 years old.
He was a cute baby, with dark hair and bright, inquisitive eyes. He was also a good baby, sitting in his car seat, watching me bake, shop or fold laundry and listening to me babble - until he'd fall asleep. While he was full of energy and needed regular stimulation, he was a good baby. He was quick with the milestones too: rolling over at 3-1/2 months, walking at eight and talking in short sentences at a year old.
Today, he's a typical teenager with his own language (powned, epic fail - what?!), a wacky sense of humour, a need for a lot of sleep and a unique, "why don't you take a shower" aroma. As with most teenagers, his priorities are different than ours (the need to keep his room neat or do chores on time) and his friends are important. He can also be thoughtful, sensitive and helpful. He's smart as a whip, quick with a pun and an awesome drummer.
In grade 9, he's discovering new talents and skills, which are expanding his horizons. I hope I have the opportunity to see what career piques his interest and which girls capture his heart. I get excited envisioning the best for my little boy (for he'll always be that), who made his appearance 14 years ago today.
Tina
P.S. I have an appointment with Dr. W on Tuesday to talk treatment. I was hoping for this week, but no such luck.
He was a cute baby, with dark hair and bright, inquisitive eyes. He was also a good baby, sitting in his car seat, watching me bake, shop or fold laundry and listening to me babble - until he'd fall asleep. While he was full of energy and needed regular stimulation, he was a good baby. He was quick with the milestones too: rolling over at 3-1/2 months, walking at eight and talking in short sentences at a year old.
Today, he's a typical teenager with his own language (powned, epic fail - what?!), a wacky sense of humour, a need for a lot of sleep and a unique, "why don't you take a shower" aroma. As with most teenagers, his priorities are different than ours (the need to keep his room neat or do chores on time) and his friends are important. He can also be thoughtful, sensitive and helpful. He's smart as a whip, quick with a pun and an awesome drummer.
In grade 9, he's discovering new talents and skills, which are expanding his horizons. I hope I have the opportunity to see what career piques his interest and which girls capture his heart. I get excited envisioning the best for my little boy (for he'll always be that), who made his appearance 14 years ago today.
Tina
P.S. I have an appointment with Dr. W on Tuesday to talk treatment. I was hoping for this week, but no such luck.
Tuesday, November 1, 2011
London Life rocks
Almost nine years ago, I started working for an amazing company, with unbelievably generous people. In early December 2002, I joined London Life's communications department on a one-year contract and I haven't looked back since.
I've always said, it's the people who make or break an organization. Well, those at London Life are the cream of the crop. I've never felt more supported or loved than by my colleagues (aka friends) at this company. When I went into the hospital a month ago, my wonderful friends started asking how they could help me and my family. I was visited by several of them while in the hopsital and food started arriving at my doorstep from the time I arrived home.
These same friends also started Team Tina to participate in the Run for Ovarian Cancer when I was diagnosed in 2009. Many of them participate and raise funds for ovarian cancer research every year, and for that I'm very thankful. This event raises money for ovarian cancer research in London; work that may lead to a discovery to help me in my fight.
London Life, the organization has also been wonderfully supportive during my journey as well. It matches the funds raised by Team Tina, up to $6,000, each year, which gives the diligent researchers even more funds to support their work. In addition, the organization supports me financially through disability benefits while I take time off to fight this stupid disease. I'm lucky to belong to the London Life family.
I went into work yesterday to clean out my cube. I won't be using it for the next six months or so, and space is in high demand. While I was there, many stopped to say hi, give me a hug, ask me if I needed help and wish me well with my treatment. I loved seeing all the friendly, supportive faces. (And apparently, I look much better than I did before I went off. Apparently, I wasn't looking so good.)
Throughout my journey with cancer, my work friends have showered me with food, gifts, love, friendship, hugs and support. At times it's overwhelming how generous people are because I know I can never say thank you enough or repay the generosity. I marvel once again at how lucky I am to have such wonderful people in my life. I'm truly blessed.
Tina
I've always said, it's the people who make or break an organization. Well, those at London Life are the cream of the crop. I've never felt more supported or loved than by my colleagues (aka friends) at this company. When I went into the hospital a month ago, my wonderful friends started asking how they could help me and my family. I was visited by several of them while in the hopsital and food started arriving at my doorstep from the time I arrived home.
These same friends also started Team Tina to participate in the Run for Ovarian Cancer when I was diagnosed in 2009. Many of them participate and raise funds for ovarian cancer research every year, and for that I'm very thankful. This event raises money for ovarian cancer research in London; work that may lead to a discovery to help me in my fight.
London Life, the organization has also been wonderfully supportive during my journey as well. It matches the funds raised by Team Tina, up to $6,000, each year, which gives the diligent researchers even more funds to support their work. In addition, the organization supports me financially through disability benefits while I take time off to fight this stupid disease. I'm lucky to belong to the London Life family.
I went into work yesterday to clean out my cube. I won't be using it for the next six months or so, and space is in high demand. While I was there, many stopped to say hi, give me a hug, ask me if I needed help and wish me well with my treatment. I loved seeing all the friendly, supportive faces. (And apparently, I look much better than I did before I went off. Apparently, I wasn't looking so good.)
Throughout my journey with cancer, my work friends have showered me with food, gifts, love, friendship, hugs and support. At times it's overwhelming how generous people are because I know I can never say thank you enough or repay the generosity. I marvel once again at how lucky I am to have such wonderful people in my life. I'm truly blessed.
Tina
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