T-3
It's three days before my pigtail port is inserted. Three days before my life once again changes in ways I can't even begin to anticipate. I know the port will limit my water-based activities, which I love, but in return it'll prevent my entire abdominal cavity from filling with fluid, which I loathe.
However, I don't know if the pigtail will be uncomfortable, if its presence will restrict me in other ways, how I'm going to sleep, how I'm going to conceal the bag in my oh-so-light summer clothing. The whole idea still freaks me out, but I'm trying not to think about the procedure and the repercussions. I'll deal with it when it's time.
I'm sure many of you are wondering about my fluid situation. I get visibly bigger every day. Clothes that fit okay in the morning, don't feel so comfortable by the afternoon. I'm round and roly poly, but luckily I'm still squishy. When the entire area fills with fluid, it becomes rock hard and exerts pressure everywhere, which creates constant discomfort. Right now, my mid back seems to be bearing the brunt of carrying the extra fluid around, but it's reasonably tolerable.
I'm still sleeping okay, and I can eat and drink, so I'm doing pretty well. It's all relative. I know how bad I can feel and this is bearable. Sure, I get progressively uncomfortable as each day progresses (may be a gravity thing), I'm somewhat limited in my activities, and I quaff Tylenol at semi-regular intervals, but it could be worse. And I know there is an end in sight, which I think helps me mentally.
In anticipation of my pigtail and water restrictions, we're headed to Port Franks (aka the spa) today. I'll swim in the lake, play, eat and laugh. I'll feel the love of some good friends. That's how I choose to spend my Saturday of the August long weekend. I have to take advantage of the pockets of awesomeness in my life. Sure, they may not be perfect given my physical situation, but little in life is perfect. Regardless, they're still pretty darn great.
Hope you find something enjoyable for this sunny Saturday too.
Tina
Saturday, July 30, 2011
Thursday, July 28, 2011
My full house
Some people might say I've been dealt a pretty crappy hand in this poker game called life. And sure, if you focus on all the bad stuff, you'd be convinced I'd been dealt a pair of twos.
- I was diagnosed with one of the deadliest forms of cancer at stage IIIC at age 42.
- I have the BRCA-1 gene mututation, which predisposes me to not only ovarian cancer, but breast cancer as well.
- I'm experiencing an occurence for the third time in 2-1/2 years.
- The clinical trial drug that was supposed to be a miracle drug stopped working for me.
- Yet, my biggest tumour may be too small to qualify me for the next clinical trial. If that happens, I have to do chemo for the third time.
- I'm noticably filling with ascities on a daily basis.
- I have a son with behavioural difficulties, which means many trips to the principal's office, interactions with all forms of authority, doctors' appointments and medication.
- Being sick again could mean stretching the household dollars a bit more.
- I've been in relationships where I was treated like crap.
- The rest of my life will most likely be jumping from a series of treatments and clinical trials.
- I may die young, leaving all that is precious to me.
Sure, if I want to focus on all those nasty realities, I would only see the twos in my hand. Instead, I notice:
- I grew up in a house with two parents who loved me and gave me all they could so I could make the best start in life.
- They created the drive and helped make it possible for me to go to university (and they didn't dictate what I had to study).
- I met the love of my life and soul mate after I'd stopped looking, and he loved me right back. We've been together 18 wonderful years.
- We produced two wonderful, unique and talented children whom I hope to see develop into fine adults.
- I have an amazing and generous sister who would drive to the ends of the earth and back for me. She makes me laugh, holds my hand and shares my tears.
- I'm surrounded by many, many supportive and caring people who go out of their way to be there for me, even if it's just a soul-lifting hug or a warm smile.
- My cancer journey allowed me to meet many more fabulous individuals who make my life richer and more fulfilling.
- I write for a living. (Okay, maybe investments and insurance aren't the most stimulating topics, but I get to work with words.)
- I live in a comfortable house, go on vacations, own a hot tub, can still dance when I want and don't sound too bad when I sing in the shower.
I choose to examine the rest of the cards and notice those lowly little twos, paired with the three lucky sevens create a full house. Sure, it may not be the best full house I could draw, but it's not so bad. My house is full of love, goodness, warmth and wonderful blessings.
Regardless of how far my humble, but beautiful, full house takes me, I'm all in.
Tina
- I was diagnosed with one of the deadliest forms of cancer at stage IIIC at age 42.
- I have the BRCA-1 gene mututation, which predisposes me to not only ovarian cancer, but breast cancer as well.
- I'm experiencing an occurence for the third time in 2-1/2 years.
- The clinical trial drug that was supposed to be a miracle drug stopped working for me.
- Yet, my biggest tumour may be too small to qualify me for the next clinical trial. If that happens, I have to do chemo for the third time.
- I'm noticably filling with ascities on a daily basis.
- I have a son with behavioural difficulties, which means many trips to the principal's office, interactions with all forms of authority, doctors' appointments and medication.
- Being sick again could mean stretching the household dollars a bit more.
- I've been in relationships where I was treated like crap.
- The rest of my life will most likely be jumping from a series of treatments and clinical trials.
- I may die young, leaving all that is precious to me.
Sure, if I want to focus on all those nasty realities, I would only see the twos in my hand. Instead, I notice:
- I grew up in a house with two parents who loved me and gave me all they could so I could make the best start in life.
- They created the drive and helped make it possible for me to go to university (and they didn't dictate what I had to study).
- I met the love of my life and soul mate after I'd stopped looking, and he loved me right back. We've been together 18 wonderful years.
- We produced two wonderful, unique and talented children whom I hope to see develop into fine adults.
- I have an amazing and generous sister who would drive to the ends of the earth and back for me. She makes me laugh, holds my hand and shares my tears.
- I'm surrounded by many, many supportive and caring people who go out of their way to be there for me, even if it's just a soul-lifting hug or a warm smile.
- My cancer journey allowed me to meet many more fabulous individuals who make my life richer and more fulfilling.
- I write for a living. (Okay, maybe investments and insurance aren't the most stimulating topics, but I get to work with words.)
- I live in a comfortable house, go on vacations, own a hot tub, can still dance when I want and don't sound too bad when I sing in the shower.
I choose to examine the rest of the cards and notice those lowly little twos, paired with the three lucky sevens create a full house. Sure, it may not be the best full house I could draw, but it's not so bad. My house is full of love, goodness, warmth and wonderful blessings.
Regardless of how far my humble, but beautiful, full house takes me, I'm all in.
Tina
Tuesday, July 26, 2011
Tiny step forward
I have so much to tell you, even though I've only moved forward a tiny bit in terms of my treatment plan. But I know more about the clinical trial, my options, what they're going to do about the ever-growing ascities and the potential timing, so I'm just bursting with news. While I still don't know what it all means for my future, information is always a good thing.
Pigtail
No, not the cute little hair braids, but the proposed solution for my ascities problem, aka my nemesis. Ascities is the protein-filled fluid the ovarian cancer cells produce in my body.
"But my tumours are all so small, how can they be producing so much fluid?" I asked. Well, apparently, all those little microscopic grains of dust that were left after my initial surgery in 2009, are big enough - even though they're still very small and don't really show up on the CT scan - to produce the fluid. These are the cells that first became resistent to the Olaparib and have now decided to rapidly produce ascities. It's sloshing around in my abdomen, causing all kinds of discomfort. It's full of protein (which I have to replace) and an amber brown colour (kind of like a beer, with a foamy protein head). Gross.
Even when I'm drained, they continue to excrete fluid and fill me back up again. In fact, I can feel a difference between when I was drained yesterday and this afternoon. Sheesh, stop peeing in the pool stupid cancer cells.
Since I had 2.8 L drained on July 15 and then needed 4.5 L extracted only 10 days later, I'm going to continue to have problems with this darned fluid. So Dr. H recommends I get a port inserted into my abdomen, with a pigtail tip sticking out of the top that connects to a bag. The fluid would continuously drain into this bag and I'd empty it myself. The top is curly like a pig's tail, hence its name.
The whole idea freaks me out a bit. While I welcome the opportunity not to undergo paracentesis every week or so, having my fluids drain outside my body makes me feel weird and like I'm sick. (Yeah, yeah, I know I am but still.) I know people do it all the time, but I've never had to have a bag before. I'll have to hide the bag in my clothes and chose my outfits with care. And once its in, no more hot tub, swimming or all that fun summer-time stuff for me. Sigh.
But it will mean I don't have to subject myself to that huge needle (gasp, I saw it yesterday for the first time!) several more times. I also means I will know when my treatment starts to work.
Regorafenib
Which brings me to the clinical trial. All the final details hadn't been worked out so I couldn't sign up for the study today. Dr. H is hoping everything will be in place later this week so I can go in and sign on the dotted line next week. Of course, I'll have to undergo all the testing to ensure I qualify. That means a EKG to check my heart, blood work and a CT scan to ensure I have a tumour larger than one centimetre to give them something to measure.
The study will evaluate the interaction of Regorafenib with other medication. So essentially, it sounds as though the Regorafenib, which cuts off the blood supply to some of cancer's key pathways is an effective drug that works and the drug company wants to see if people with other conditions (high blood pressure, heart disease, diabetes, etc.) could take it with the medication for these particular diseases. I'd be signing up to get on the Regoarafenib, which is what I really want because it's what targets the cancer cells, and agree to take other drugs and see what they'll do to me. Talk about your lab rat.
I'll provide more details about the actual study, drugs and testing protocol when I sign the papers and it all becomes official.
What if?
So what happens if my tumour hasn't grown by at least 0.3 cm and I don't qualify for the clinical trial? Well, then it means another round of chemotherapy for me. Dr. H said it's been more than six months since my last dose of chemo, so the cancer responds to the platinum-based chemo. Therefore, it's the next best solution for me. While it makes me very tired to think about that possibility, I will do what I have to do to stay here, living my life, and loving my family and friends. I am NOT going anywhere.
Once I start the Regorafinib or the chemo, the fluid should dry up. I'll be able to tell from the flow going into my bag (which I'm going to have to name). Dr. H says the Regorafinib has been known to dry up fluid within a few days and the chemo may take a cycle or two.
So that's where things stand right now. It's a lot to absorb but very little progress. I did have blood drawn for a second time today to ensure the clotting factor in my blood is adequate. I just got the call and my pigtail procedure is scheduled for next Tuesday morning. So I'm taking baby steps. Hopefully soon, we'll be able to increase the strides and get moving in the right direction.
Tina
Pigtail
No, not the cute little hair braids, but the proposed solution for my ascities problem, aka my nemesis. Ascities is the protein-filled fluid the ovarian cancer cells produce in my body.
"But my tumours are all so small, how can they be producing so much fluid?" I asked. Well, apparently, all those little microscopic grains of dust that were left after my initial surgery in 2009, are big enough - even though they're still very small and don't really show up on the CT scan - to produce the fluid. These are the cells that first became resistent to the Olaparib and have now decided to rapidly produce ascities. It's sloshing around in my abdomen, causing all kinds of discomfort. It's full of protein (which I have to replace) and an amber brown colour (kind of like a beer, with a foamy protein head). Gross.
Even when I'm drained, they continue to excrete fluid and fill me back up again. In fact, I can feel a difference between when I was drained yesterday and this afternoon. Sheesh, stop peeing in the pool stupid cancer cells.
Since I had 2.8 L drained on July 15 and then needed 4.5 L extracted only 10 days later, I'm going to continue to have problems with this darned fluid. So Dr. H recommends I get a port inserted into my abdomen, with a pigtail tip sticking out of the top that connects to a bag. The fluid would continuously drain into this bag and I'd empty it myself. The top is curly like a pig's tail, hence its name.
The whole idea freaks me out a bit. While I welcome the opportunity not to undergo paracentesis every week or so, having my fluids drain outside my body makes me feel weird and like I'm sick. (Yeah, yeah, I know I am but still.) I know people do it all the time, but I've never had to have a bag before. I'll have to hide the bag in my clothes and chose my outfits with care. And once its in, no more hot tub, swimming or all that fun summer-time stuff for me. Sigh.
But it will mean I don't have to subject myself to that huge needle (gasp, I saw it yesterday for the first time!) several more times. I also means I will know when my treatment starts to work.
Regorafenib
Which brings me to the clinical trial. All the final details hadn't been worked out so I couldn't sign up for the study today. Dr. H is hoping everything will be in place later this week so I can go in and sign on the dotted line next week. Of course, I'll have to undergo all the testing to ensure I qualify. That means a EKG to check my heart, blood work and a CT scan to ensure I have a tumour larger than one centimetre to give them something to measure.
The study will evaluate the interaction of Regorafenib with other medication. So essentially, it sounds as though the Regorafenib, which cuts off the blood supply to some of cancer's key pathways is an effective drug that works and the drug company wants to see if people with other conditions (high blood pressure, heart disease, diabetes, etc.) could take it with the medication for these particular diseases. I'd be signing up to get on the Regoarafenib, which is what I really want because it's what targets the cancer cells, and agree to take other drugs and see what they'll do to me. Talk about your lab rat.
I'll provide more details about the actual study, drugs and testing protocol when I sign the papers and it all becomes official.
What if?
So what happens if my tumour hasn't grown by at least 0.3 cm and I don't qualify for the clinical trial? Well, then it means another round of chemotherapy for me. Dr. H said it's been more than six months since my last dose of chemo, so the cancer responds to the platinum-based chemo. Therefore, it's the next best solution for me. While it makes me very tired to think about that possibility, I will do what I have to do to stay here, living my life, and loving my family and friends. I am NOT going anywhere.
Once I start the Regorafinib or the chemo, the fluid should dry up. I'll be able to tell from the flow going into my bag (which I'm going to have to name). Dr. H says the Regorafinib has been known to dry up fluid within a few days and the chemo may take a cycle or two.
So that's where things stand right now. It's a lot to absorb but very little progress. I did have blood drawn for a second time today to ensure the clotting factor in my blood is adequate. I just got the call and my pigtail procedure is scheduled for next Tuesday morning. So I'm taking baby steps. Hopefully soon, we'll be able to increase the strides and get moving in the right direction.
Tina
Monday, July 25, 2011
Relief
In keeping with the blog from the last draining, imagine strapping two 2L bottles of Coke to your abdomen and then add another 500 mL bottle of the brown, fizzy beverage to your body. Now go about your normal life. It's not even possible; especially when you're only five feet tall and have a fairly compact space from your rib cage to your pelvis.
The doc drained 4.5 L, which is almost 10 lbs of fluid, from my abdomen this evening. I feel much, much better. Tonight I get some much-needed sleep and tomorrow morning we head to Hamilton again to hear the plans for the future.
Night all,
Tina
The doc drained 4.5 L, which is almost 10 lbs of fluid, from my abdomen this evening. I feel much, much better. Tonight I get some much-needed sleep and tomorrow morning we head to Hamilton again to hear the plans for the future.
Night all,
Tina
Unbearable
It's stunning how quickly my situation slipped from very uncomforable into downright unbearable. When I wrote my blog yesterday morning, I was moaning about my swollen belly and eagerly anticipating the paracentisis on Tuesday. Now I'm wondering if I can even wait that long. (And when one uses eagerly anticipating and paracentisis in the same sentence, you know it has to be bad.)
I can't eat. In fact, I just vomited up the small amount of dinner I ate last night. Apparently, my body isn't processing food very well. While my stomach growls every once in a while, I have no desire nor cravings to eat anything. As someone who generally loves food, this is a sad turn of events.
I can't sleep. I dose in and out of consciousness, but comfort is getting increasingly difficult.
I have a wicked headache. I'm not sure if it's from the pressure of the fluid increasing my blood pressure, the stress, the strain on my back and neck muscles, or all of the above, but I feel as though someone is trying to drive a sharp implement into the middle of my forehead. Of course, the lack of sleep and food could also be contributing factors.
I'm in a constant state of pain. Sometimes it's only a little pressure under my ribs or in my mid back. Other times, the pain has me gasping for breath. I can't even sneeze because it hurts too much. I'm taking Tylenol to help ease the discomfort, but I think I just threw them up.
Sometimes I don't think I can stand being in my body for one more second and I want to scream. I feel like the fluid is going to rip me apart. I don't feel like me any more. I feel sick. I spent almost all day in bed yesterday - on a semi-sunny Sunday - because I didn't feel well enough to do anything. Michael has to do everything around the house.
I HATE this so much. I want to swear a blue streak of nasty words and that still won't adequately describe how I feel. I abhor feeling helpless and out of control.
I'm nearing the end of my rope. Hopefully someone will toss me a lifeline soon and start pulling me towards the shores of sanity.
Tina
I can't eat. In fact, I just vomited up the small amount of dinner I ate last night. Apparently, my body isn't processing food very well. While my stomach growls every once in a while, I have no desire nor cravings to eat anything. As someone who generally loves food, this is a sad turn of events.
I can't sleep. I dose in and out of consciousness, but comfort is getting increasingly difficult.
I have a wicked headache. I'm not sure if it's from the pressure of the fluid increasing my blood pressure, the stress, the strain on my back and neck muscles, or all of the above, but I feel as though someone is trying to drive a sharp implement into the middle of my forehead. Of course, the lack of sleep and food could also be contributing factors.
I'm in a constant state of pain. Sometimes it's only a little pressure under my ribs or in my mid back. Other times, the pain has me gasping for breath. I can't even sneeze because it hurts too much. I'm taking Tylenol to help ease the discomfort, but I think I just threw them up.
Sometimes I don't think I can stand being in my body for one more second and I want to scream. I feel like the fluid is going to rip me apart. I don't feel like me any more. I feel sick. I spent almost all day in bed yesterday - on a semi-sunny Sunday - because I didn't feel well enough to do anything. Michael has to do everything around the house.
I HATE this so much. I want to swear a blue streak of nasty words and that still won't adequately describe how I feel. I abhor feeling helpless and out of control.
I'm nearing the end of my rope. Hopefully someone will toss me a lifeline soon and start pulling me towards the shores of sanity.
Tina
Sunday, July 24, 2011
Goodness reminders
While I wasn't completely incommunicado because I had my Blackberry, I did take a hiatus from my blog during my vacation to the cottage this past week. It's quite difficult to see the web page on the tiny screen, so I just didn't write. This was my longest absent stretch since I began blogging over two years ago. Even when I had surgery or traveled to Cuba, I blogged. Hopefully absence made the heart grow fonder and you're happy I'm back.
I want to share a few significant events happened over the past week. The first two highlight the goodness of the third.
Horrible accident
First, I want to send a cyber hug to all those from London Life, and their families and friends involved in the bus crash on Thursday night during a company-arranged bus trip to New York city. Sadly, the driver of the transport truck involved in the accident died. While some of the London Life crew were seriously injured, all the passengers survived.
It's incidents like these - the kind that change lives in the blink of an eye - that make people stop and remember their priorities in life. These scary jolts back to reality prompt "I love yous" and thanfulness for the life's goodness.
Big as a house
When the doc drained 3,800 mL of ascities from my abdomen a week ago Friday, the cancer cells must have deemed the extra room as reason to party and create even more fluid. While the paracentisis, brought much-needed relief for a few days, by Tuesday I could feel my belly starting to expand once again. Now I'm as big as a house.
To strangers, I'm sure I look like an older pregnant woman, waddling around, rubbing her back and generally feeling uncomfortable. Michael says I look bigger than when I was pregnant, which I find hard to believe because I was humongous. But I was proud of those mountainous bumps beneath my shirt because I was creating life. This is all fluid and it's the exact opposite of life-giving.
I've gotten to the point where I can't eat much, my beloved coffee creates painful acid (because I think my stomach is shoved into my chest region), the fluid continuously presses into my ribs and back, and sleep is uncomfortable beyond a few hours at a time. Every movement in my stomach and abdomen - gas moving, hunger pains, etc. - creates pressure on the fluid, which in turn exerts force on my skin. As a result, it's all painful. It regularly feels like someone is trying to stick a fork into one section of my abdomen or another. And trust me, no need to stick a fork in me because I feel more than done.
But there's no sense trying to get drained now. On a weekend, that would involve a multi-hour visit to emergency. After waiting hours, I'd finally see the oncologist or ob-gyn oncologist on call, who may or may not have done paracentisis before. I don't want to be a pin cushion. I don't want to sit around in emergency. I see Dr. H in Hamilton on Tuesday to (finally) discuss my options for treatment and he'll skillfully drain me then.
But I'm growing weary of this waiting and all the fluid. I am tired to getting worse. I feel as though an alien invaded my body and I have no control over it. I want action now! Hopefully, things move quickly after Tuesday.
Toberymory treat
Both the bus accident and the fluid-filled proof of my returning cancer, reinforce I must enjoy my life each and every day. As a result, I'm truly grateful for the amazing week my family had at the cottage in Tobermory. Although my activity level was hampered by my growing belly and pain, we did take advantage of the distractions and fun in the area.
We snorkeled, swam and canoed through the crystal clear waters. We rode our bikes, explored the museum and sampled the decadent ice cream. The deck on the cottage was a perfect retreat for reading books, playing the guitar or engaging in a challenging game of chess. It was also the locale for a few family dinners. One day, we decided to take a glass-bottom boat tour to Flowerpot Island where we hiked, toured and snorkeled. It was exactly what we needed - a week away from reality.
Now we need to face it head on and move (hopefully quickly) into whatever this next stage involves. Yet, as brushes with tragedy and sickness remind us, we can't forget to take advantage of and enjoy all the good things in life each and every day.
Tina
I want to share a few significant events happened over the past week. The first two highlight the goodness of the third.
Horrible accident
First, I want to send a cyber hug to all those from London Life, and their families and friends involved in the bus crash on Thursday night during a company-arranged bus trip to New York city. Sadly, the driver of the transport truck involved in the accident died. While some of the London Life crew were seriously injured, all the passengers survived.
It's incidents like these - the kind that change lives in the blink of an eye - that make people stop and remember their priorities in life. These scary jolts back to reality prompt "I love yous" and thanfulness for the life's goodness.
Big as a house
When the doc drained 3,800 mL of ascities from my abdomen a week ago Friday, the cancer cells must have deemed the extra room as reason to party and create even more fluid. While the paracentisis, brought much-needed relief for a few days, by Tuesday I could feel my belly starting to expand once again. Now I'm as big as a house.
To strangers, I'm sure I look like an older pregnant woman, waddling around, rubbing her back and generally feeling uncomfortable. Michael says I look bigger than when I was pregnant, which I find hard to believe because I was humongous. But I was proud of those mountainous bumps beneath my shirt because I was creating life. This is all fluid and it's the exact opposite of life-giving.
I've gotten to the point where I can't eat much, my beloved coffee creates painful acid (because I think my stomach is shoved into my chest region), the fluid continuously presses into my ribs and back, and sleep is uncomfortable beyond a few hours at a time. Every movement in my stomach and abdomen - gas moving, hunger pains, etc. - creates pressure on the fluid, which in turn exerts force on my skin. As a result, it's all painful. It regularly feels like someone is trying to stick a fork into one section of my abdomen or another. And trust me, no need to stick a fork in me because I feel more than done.
But there's no sense trying to get drained now. On a weekend, that would involve a multi-hour visit to emergency. After waiting hours, I'd finally see the oncologist or ob-gyn oncologist on call, who may or may not have done paracentisis before. I don't want to be a pin cushion. I don't want to sit around in emergency. I see Dr. H in Hamilton on Tuesday to (finally) discuss my options for treatment and he'll skillfully drain me then.
But I'm growing weary of this waiting and all the fluid. I am tired to getting worse. I feel as though an alien invaded my body and I have no control over it. I want action now! Hopefully, things move quickly after Tuesday.
Toberymory treat
Both the bus accident and the fluid-filled proof of my returning cancer, reinforce I must enjoy my life each and every day. As a result, I'm truly grateful for the amazing week my family had at the cottage in Tobermory. Although my activity level was hampered by my growing belly and pain, we did take advantage of the distractions and fun in the area.
We snorkeled, swam and canoed through the crystal clear waters. We rode our bikes, explored the museum and sampled the decadent ice cream. The deck on the cottage was a perfect retreat for reading books, playing the guitar or engaging in a challenging game of chess. It was also the locale for a few family dinners. One day, we decided to take a glass-bottom boat tour to Flowerpot Island where we hiked, toured and snorkeled. It was exactly what we needed - a week away from reality.
Now we need to face it head on and move (hopefully quickly) into whatever this next stage involves. Yet, as brushes with tragedy and sickness remind us, we can't forget to take advantage of and enjoy all the good things in life each and every day.
Tina
Friday, July 15, 2011
Congratulations, it's a . . .
Imagine taking a 2 litre bottle of Coke and strapping it to your abdomen. Now take another 1 L bottle of water and add it above, below or even on your back. Now walk around, sleep and go about your daily life with all that extra fluid.
That's almost the amount that was drained from my abdominal cavity this morning. The doc drained 2,800 mL of ascities from me - and I know there's still more in there! So I'm walking around with even more of the dastardly stuff. But I do feel better. I can eat and breathe easier. Even though I still have lots of gas plaguing my belly (something about lots of fluid around my bowel producing it), I'm better, lighter and somewhat smaller. Although my ribs still hurt and my puncture site is a little sore.
On my drive home, I wondered how much 3 L of fluid would weigh and I was astounded to learn it was 3 kg or 6.6 lbs. Yikes! I just got rid of a baby. Congratulations, Tina, it's a . . .
Luckily, I don't have to take it home.
Tina
That's almost the amount that was drained from my abdominal cavity this morning. The doc drained 2,800 mL of ascities from me - and I know there's still more in there! So I'm walking around with even more of the dastardly stuff. But I do feel better. I can eat and breathe easier. Even though I still have lots of gas plaguing my belly (something about lots of fluid around my bowel producing it), I'm better, lighter and somewhat smaller. Although my ribs still hurt and my puncture site is a little sore.
On my drive home, I wondered how much 3 L of fluid would weigh and I was astounded to learn it was 3 kg or 6.6 lbs. Yikes! I just got rid of a baby. Congratulations, Tina, it's a . . .
Luckily, I don't have to take it home.
Tina
Tina versus the giant needle
Today is the day I finally get relief from the rapidly increasing fluid accumulating in my abdomen. It's just in the knick of time (if not one day too late) because I have now grown painfully uncomfortable. My ribs and back ache, my stomach and bowels are squished and I breathe heavily with the slightest exertion.
I didn't sleep well last night. My protuding abdomen prevented me from getting comfortable and created tremendous pressure on my back. I tossed and turned throughout the night, striving for a comfortable position where I could drift off to dreamland. Instead, I dozed fitfully and changed positions frequently. And with my girth, that's not easy. It's quite the production.
The pain and the lack of sleep, to say nothing about my dread about the upcoming procedure, leave me an overemotional mess this morning. While the paracentisis - the fancy name for removing fluid from the abdomen - will provide me with relief, I hate the procedure itself.
I asked for an ultrasound to pinpoint the biggest pocket of fluid and avoid the chance I'd be used as a pin cushion. That happened last year and I needed an ultrasound on a completely different day to complete the draining. So my request is designed to prevent that possibility. But that means I need to be wheeled about the hospital on a stretcher. I have to lay really still after the ultrasound technician marks the ideal spot on my abdomen, so hence the stretcher. But I hate how incapacitated I feel. And I hate the stares as I'm wheeled throughout the hallways.
Then the paracentisis involves freezing as many layers of the abdomen as possible with a needle. Luckily, those are little pricks. The doc can freeze everything except the most internal layer. Then the big needle (I'm assuming as I've never seen it, nor do I want to) is inserted and there's some pain as it pierces the last abdominal wall and pressure. The actual fluid withdrawal via vacutainers doesn't hurt much, but it's uncomfortable. Last year, I felt the needle tip on one of my internal organs during one of my draining sessions. That's very unpleasant.
But I keep telling myself it'll all be worth it because I'll experience relief afterwards. I'll be able to eat and breathe properly again. My ability to move, sleep and bend over will improve, at least for a while. Unfortunately, I'll probably have to undergo this procedure at least two more times before my treatment, whatever that entails, begins. That thought makes me cry. But one day at a time.
I'm counting on this procedure to make it possible for me to enjoy my vacation next week. Our family is visiting a cottage we got through the Cottage Dreams Cancer Recovery Program. I'm very thankful for the generosity of the cottage owners and the program, and our entire family is looking forward to spending time in Tobermory. With some (hopefully most) of the fluid drained from my abdomen, I hope to have more energy to get excited, pack and partake in the activities of the cottage.
It's a beautiful week to enjoy a stunning place.
Soon it'll be time to put on my brave face and head to the hospital. Cross your fingers everything goes smoothly.
Tina
I didn't sleep well last night. My protuding abdomen prevented me from getting comfortable and created tremendous pressure on my back. I tossed and turned throughout the night, striving for a comfortable position where I could drift off to dreamland. Instead, I dozed fitfully and changed positions frequently. And with my girth, that's not easy. It's quite the production.
The pain and the lack of sleep, to say nothing about my dread about the upcoming procedure, leave me an overemotional mess this morning. While the paracentisis - the fancy name for removing fluid from the abdomen - will provide me with relief, I hate the procedure itself.
I asked for an ultrasound to pinpoint the biggest pocket of fluid and avoid the chance I'd be used as a pin cushion. That happened last year and I needed an ultrasound on a completely different day to complete the draining. So my request is designed to prevent that possibility. But that means I need to be wheeled about the hospital on a stretcher. I have to lay really still after the ultrasound technician marks the ideal spot on my abdomen, so hence the stretcher. But I hate how incapacitated I feel. And I hate the stares as I'm wheeled throughout the hallways.
Then the paracentisis involves freezing as many layers of the abdomen as possible with a needle. Luckily, those are little pricks. The doc can freeze everything except the most internal layer. Then the big needle (I'm assuming as I've never seen it, nor do I want to) is inserted and there's some pain as it pierces the last abdominal wall and pressure. The actual fluid withdrawal via vacutainers doesn't hurt much, but it's uncomfortable. Last year, I felt the needle tip on one of my internal organs during one of my draining sessions. That's very unpleasant.
But I keep telling myself it'll all be worth it because I'll experience relief afterwards. I'll be able to eat and breathe properly again. My ability to move, sleep and bend over will improve, at least for a while. Unfortunately, I'll probably have to undergo this procedure at least two more times before my treatment, whatever that entails, begins. That thought makes me cry. But one day at a time.
I'm counting on this procedure to make it possible for me to enjoy my vacation next week. Our family is visiting a cottage we got through the Cottage Dreams Cancer Recovery Program. I'm very thankful for the generosity of the cottage owners and the program, and our entire family is looking forward to spending time in Tobermory. With some (hopefully most) of the fluid drained from my abdomen, I hope to have more energy to get excited, pack and partake in the activities of the cottage.
It's a beautiful week to enjoy a stunning place.
Soon it'll be time to put on my brave face and head to the hospital. Cross your fingers everything goes smoothly.
Tina
Wednesday, July 13, 2011
Grey fog
Despondent
Discouraged
Disheartened
Downcast
Melancholy
Pessimistic
Sad
Sorrowful
These words all describe the depth of emotion I feel sometimes. As a friend wisely pointed out last week (and I knew this), despondent - and all the above synonyms - are other terms for depressed. I know sometimes I sink into the dark, mucky depths of depression. When I do, I feel listless and I don't get enjoyment from my usual activities. I'm horrible company and have a hard time engaging with others. I don't meant to withdraw, but I do.
I know that's depression. And I also know I have good reasons to be depressed. I'm experiencing cancer for the third time in just over two years. I'm blowing up like a freaking water balloon. I'm facing treatment yet again. I'm getting discouraged about my strength (and medical science's ability) to stop this disease. I feel bad for my family and friends. I'm scared, sad, lonely and overwhelmed. Hello depression.
However, I don't know if my affliction is bad enough to mention to my doctor. I dip in and out of that grey fog, depending on the day. I don't know if medication would help - or if I'd even be allowed to take anything for it.
It doesn't help I'm so exhausted I could cry. Despite sleeping quite well every night (and without any pharmalogical assistance) I feel as though I've done an all-nighter. Those stupid, rapidly-producing cancer cells must be sucking so much energy out of me to replicate and create all the sloshy ascities. I'm working on day two of a headache and my squished stomach sends acid into my throat for fun.
(Aren't I a bundle of joy this morning?)
To counteract my melancholy mood today, I'm going to try to focus on the little, good things in my life - as long as I can stay awake.
Tina
Discouraged
Disheartened
Downcast
Melancholy
Pessimistic
Sad
Sorrowful
These words all describe the depth of emotion I feel sometimes. As a friend wisely pointed out last week (and I knew this), despondent - and all the above synonyms - are other terms for depressed. I know sometimes I sink into the dark, mucky depths of depression. When I do, I feel listless and I don't get enjoyment from my usual activities. I'm horrible company and have a hard time engaging with others. I don't meant to withdraw, but I do.
I know that's depression. And I also know I have good reasons to be depressed. I'm experiencing cancer for the third time in just over two years. I'm blowing up like a freaking water balloon. I'm facing treatment yet again. I'm getting discouraged about my strength (and medical science's ability) to stop this disease. I feel bad for my family and friends. I'm scared, sad, lonely and overwhelmed. Hello depression.
However, I don't know if my affliction is bad enough to mention to my doctor. I dip in and out of that grey fog, depending on the day. I don't know if medication would help - or if I'd even be allowed to take anything for it.
It doesn't help I'm so exhausted I could cry. Despite sleeping quite well every night (and without any pharmalogical assistance) I feel as though I've done an all-nighter. Those stupid, rapidly-producing cancer cells must be sucking so much energy out of me to replicate and create all the sloshy ascities. I'm working on day two of a headache and my squished stomach sends acid into my throat for fun.
(Aren't I a bundle of joy this morning?)
To counteract my melancholy mood today, I'm going to try to focus on the little, good things in my life - as long as I can stay awake.
Tina
Tuesday, July 12, 2011
Round and sloshy
Like a water balloon with a slow, steady stream of water, my abdomen is growing round and sloshy. It's now stretched to the beyond-comfort point. As a result, I'm going to have to call my doc today to talk about getting it drained.
I was hoping to avoid the semi-gruesome procedure that involves needles, some freezing and vacuum containers. But I want to be able to enjoy my cottage vacation next week. I also don't enjoy my breakfast sitting in my throat because my stomach is all squished.
This whole situation makes me sad because my fluid-filled abdomen is proof I'm sick. Before now, despite what the tests indicated, I felt well physically (mentally is a completely different story) and could carry on with life. But my uncomfortable, activity-altering bloated belly may as well be sporting a flashing, neon sign reading, "Sick with cancer. Sick with cancer." In some ways I look pregnant, but I'm really too old for that.
I donned a pair of dress pants for work today. Even though they were comfortable when I wore them late last week, they feel too tight today. I may have to start wearing stretch shorts and yoga pants to work at this rate. Of course, that's doesn't exactly fit with the corporate dress code.
My friend mentioned yesterday that I don't seem sick. But I am. I don't want to be, but my body is betraying me. It makes me sad and scared.
So today I call to make an appointment to get drained - the medical term is paracentesis - so I can live more comfortably and enjoy the activities of summer. I have to do that as well as I possibly can.
Tina
I was hoping to avoid the semi-gruesome procedure that involves needles, some freezing and vacuum containers. But I want to be able to enjoy my cottage vacation next week. I also don't enjoy my breakfast sitting in my throat because my stomach is all squished.
This whole situation makes me sad because my fluid-filled abdomen is proof I'm sick. Before now, despite what the tests indicated, I felt well physically (mentally is a completely different story) and could carry on with life. But my uncomfortable, activity-altering bloated belly may as well be sporting a flashing, neon sign reading, "Sick with cancer. Sick with cancer." In some ways I look pregnant, but I'm really too old for that.
I donned a pair of dress pants for work today. Even though they were comfortable when I wore them late last week, they feel too tight today. I may have to start wearing stretch shorts and yoga pants to work at this rate. Of course, that's doesn't exactly fit with the corporate dress code.
My friend mentioned yesterday that I don't seem sick. But I am. I don't want to be, but my body is betraying me. It makes me sad and scared.
So today I call to make an appointment to get drained - the medical term is paracentesis - so I can live more comfortably and enjoy the activities of summer. I have to do that as well as I possibly can.
Tina
Monday, July 11, 2011
Awesome weekend
It was the perfect July weekend. The kind that makes you sad when it wraps up on Sunday night.
On Saturday, Michael, Tara and I met friends at Sunfest. We perused some of the booths, danced to Five Alarm Funk and the Hypnotic Brass Band, noshed on some park food and enjoyed the ambiance.
Yesterday, the entire family drove to Wallaceburg to visit my parents and relaxed under the shade of a big tree in their backyard. It was a nice visit and I enjoyed my mom's potato salad (my favourite). Then we hopped in the van for the short trek to my sister's where we spent the afternoon in her pool and hot tub, sipping cold beverages and sampling the delicious fare she set out. When we reluctantly climbed in the van at 7:30 last night, we were sunkissed, tired and full.
As a result of all the activity, I slept like the dead last night and am still tired this morning, but it was SO worth it because the weekend was full of awesomeness.
Hope yours was too.
Tina
On Saturday, Michael, Tara and I met friends at Sunfest. We perused some of the booths, danced to Five Alarm Funk and the Hypnotic Brass Band, noshed on some park food and enjoyed the ambiance.
Yesterday, the entire family drove to Wallaceburg to visit my parents and relaxed under the shade of a big tree in their backyard. It was a nice visit and I enjoyed my mom's potato salad (my favourite). Then we hopped in the van for the short trek to my sister's where we spent the afternoon in her pool and hot tub, sipping cold beverages and sampling the delicious fare she set out. When we reluctantly climbed in the van at 7:30 last night, we were sunkissed, tired and full.
As a result of all the activity, I slept like the dead last night and am still tired this morning, but it was SO worth it because the weekend was full of awesomeness.
Hope yours was too.
Tina
Friday, July 8, 2011
Time to follow my own advice
I've been preaching balance, perspective and enjoying each day and I've done exactly the opposite. Apparently, I'm good at dispensing advice and bad at taking it. As a result, I hit the wall yesterday. I was done - literally, figuratively and emotionally. I'd had enough of work, cancer, uncertainty and life in general.
I spent half the day on the verge of tears or actually crying. I was miserable, stressed and passively-agressively bitchy. Yuck. I hate myself when I'm like that. I know my friends are concerned about me and how I'm (not) handling the stress.
Last night and this morning, I decided to re-prioritize my activities. You have to appreciate how hard that is for me based on my three key strengths identified by a program I completed a few years ago are:
Responsibility
Once I commit to doing something I will follow it through to completion. I will accept no excuses from myself and I view every failure of something I've been involved in as potentially being my fault. Talk about pressure.
Harmony
This is my number one natural strength and as a result, I hate conflict. I look for opportunities to work harmoniously with people. I believe better results are achieved co-operation, kindness and collaboration. Yet, I'm struggling with this key trait every day because of some of the people with whom I'm working. Yet, I naturally say to myself, "I have to find a good way of working with x." It's exhausting.
Empathy
I sense the emotions of others and can see the world through their eyes. While I don't necessarily agree with each person's perspective, I can see their point of view. As I result, I take more onto myself at work. I know everyone is busy and I find it hard to delegate or ask for help because that demands more of others.
I know how overwhelmed I feel and therefore I sense how others must feel. But as a result, I'm taking on way to much (back to that darn responsibility trait). And I'm driving myself right round the bend. As Colonel Jack O'Neill said on Stargate SG-1, I'm "three fries short of a happy meal."
I have to change because I'm not enjoying anything right now - and that's not right. I also have to be less emotionally involved in my work. At a time when I should be ensuring I have the best balance in my life, I have none. So I'm going to do my best to ask for advice and help, to lift some of the burdens off my shoulders.
I'm also going to get out there and enjoy life. I spout some wise words sometimes, it's time I start listening to them.
I hope you have balance and fun in your life. It's a Friday in July, and that's too precious to waste.
Tina
I spent half the day on the verge of tears or actually crying. I was miserable, stressed and passively-agressively bitchy. Yuck. I hate myself when I'm like that. I know my friends are concerned about me and how I'm (not) handling the stress.
Last night and this morning, I decided to re-prioritize my activities. You have to appreciate how hard that is for me based on my three key strengths identified by a program I completed a few years ago are:
Responsibility
Once I commit to doing something I will follow it through to completion. I will accept no excuses from myself and I view every failure of something I've been involved in as potentially being my fault. Talk about pressure.
Harmony
This is my number one natural strength and as a result, I hate conflict. I look for opportunities to work harmoniously with people. I believe better results are achieved co-operation, kindness and collaboration. Yet, I'm struggling with this key trait every day because of some of the people with whom I'm working. Yet, I naturally say to myself, "I have to find a good way of working with x." It's exhausting.
Empathy
I sense the emotions of others and can see the world through their eyes. While I don't necessarily agree with each person's perspective, I can see their point of view. As I result, I take more onto myself at work. I know everyone is busy and I find it hard to delegate or ask for help because that demands more of others.
I know how overwhelmed I feel and therefore I sense how others must feel. But as a result, I'm taking on way to much (back to that darn responsibility trait). And I'm driving myself right round the bend. As Colonel Jack O'Neill said on Stargate SG-1, I'm "three fries short of a happy meal."
I have to change because I'm not enjoying anything right now - and that's not right. I also have to be less emotionally involved in my work. At a time when I should be ensuring I have the best balance in my life, I have none. So I'm going to do my best to ask for advice and help, to lift some of the burdens off my shoulders.
I'm also going to get out there and enjoy life. I spout some wise words sometimes, it's time I start listening to them.
I hope you have balance and fun in your life. It's a Friday in July, and that's too precious to waste.
Tina
Thursday, July 7, 2011
Superfreak
"She's a super freak
Super freak
She's super freaky."
As I continuously expand with fluid, I feel more and more like a freak. Perhaps I should run away and join the circus. Come one, come all and see spare tire lady. Her abdomen is full of fluid and it increases each day. One day, we'll stick a needle in her to remove litres of fluid and then we can watch her expand all over again.
Every morning, I carefully contemplate the clothes I'm going to wear to work. What still fits? What will camouflage my middle? What will make me appear "normal?" Obviously, I didn't do a very good job the other day because a colleague's eyes automatically went to my middle.
Now, I have to admit, that's always been one of my problem areas. I'm an apple shape and therefore pack on the pounds in the middle. But I'm not naive enough to believe the ascities fluid isn't starting to cause problems. In fact, the fluid pushes my fat out, making it even more pronounced. Lovely, just what I want.
Last week, Michael said he noticed my expanding form. And I (unjustly) feel friends surreptitiously check my freakish belly out when we're chatting to see how much I've expanded.
I know the fluid is pushing on internal organs because I am more gaseous these days and my stomach fills up quicker than in the past, making me feel incredibly full. Because I was designed to have babies, there's room in my abdomen for some fluid, but based on past experience, the ascities likes to build upward into my stomach region and then outward.
The whole situation - the cancer, the ascities, the waiting, and even the continuous pressure from my projects at work - is wearing me down.
Come one, come all and check out the superfreak. Or better yet, just give her a hug and pretend it's all going to be okay.
Tina
Super freak
She's super freaky."
As I continuously expand with fluid, I feel more and more like a freak. Perhaps I should run away and join the circus. Come one, come all and see spare tire lady. Her abdomen is full of fluid and it increases each day. One day, we'll stick a needle in her to remove litres of fluid and then we can watch her expand all over again.
Every morning, I carefully contemplate the clothes I'm going to wear to work. What still fits? What will camouflage my middle? What will make me appear "normal?" Obviously, I didn't do a very good job the other day because a colleague's eyes automatically went to my middle.
Now, I have to admit, that's always been one of my problem areas. I'm an apple shape and therefore pack on the pounds in the middle. But I'm not naive enough to believe the ascities fluid isn't starting to cause problems. In fact, the fluid pushes my fat out, making it even more pronounced. Lovely, just what I want.
Last week, Michael said he noticed my expanding form. And I (unjustly) feel friends surreptitiously check my freakish belly out when we're chatting to see how much I've expanded.
I know the fluid is pushing on internal organs because I am more gaseous these days and my stomach fills up quicker than in the past, making me feel incredibly full. Because I was designed to have babies, there's room in my abdomen for some fluid, but based on past experience, the ascities likes to build upward into my stomach region and then outward.
The whole situation - the cancer, the ascities, the waiting, and even the continuous pressure from my projects at work - is wearing me down.
Come one, come all and check out the superfreak. Or better yet, just give her a hug and pretend it's all going to be okay.
Tina
Tuesday, July 5, 2011
Acting aggressive
Ovarian cancer is an stupid, aggressive disease, which is why prognosis statistics are so terrible when a woman is diagnosed with a late stage of the disease.
If caught early - when the cancer is still confined to the primary site - the five year survival rate is 92.7 per cent. However, the five-year survival rate for all stages of ovarian cancer is only 45.5 per cent, which is a much poorer than the 68 per cent average five-year survival rate of all other cancers. In comparison, the 2011 Canadian five-year survival rate of women with breast cancer is 88 per cent and 79 per cent for men with the disease.
With a woman who was diagnosed at stage IIIC, my statistical news looks grim.
However, a recent CTV news story highlighted researchers who discovered the highly aggressive nature of ovarian cancer may be the reason behind its dismal survival rates. Check it out.
Maybe this discovery of how the cells behave will lead to better treatment and as a result, better outcomes. All I can say is, "Hurry, hurry!" I certainly don't want to contribute to any more horrible statistics associated with ovarian cancer.
Tina
If caught early - when the cancer is still confined to the primary site - the five year survival rate is 92.7 per cent. However, the five-year survival rate for all stages of ovarian cancer is only 45.5 per cent, which is a much poorer than the 68 per cent average five-year survival rate of all other cancers. In comparison, the 2011 Canadian five-year survival rate of women with breast cancer is 88 per cent and 79 per cent for men with the disease.
With a woman who was diagnosed at stage IIIC, my statistical news looks grim.
However, a recent CTV news story highlighted researchers who discovered the highly aggressive nature of ovarian cancer may be the reason behind its dismal survival rates. Check it out.
Maybe this discovery of how the cells behave will lead to better treatment and as a result, better outcomes. All I can say is, "Hurry, hurry!" I certainly don't want to contribute to any more horrible statistics associated with ovarian cancer.
Tina
Monday, July 4, 2011
The big unknown
As you can imagine, lots of thoughts and ideas keep swirling in my mind about what my upcoming treatment plan will involve. So much is still unknown, including whether I'll even qualify for the clinical trial Dr. H is recommending.
So here are a few of the highlights plaguing my thoughts:
This clinical trial involves an angiogenesis inhibitor, which is a substance that inhibits the growth of new blood vessels. Cancer cells are rapidly growing cells whose blood supply to help them grow would be affected by this type of drug. But I don't know the name of the drug and my poking around the Internet hasn't yielded any potential names I could research. I wish I would have had the foresight to ask the drug's name.
Dr. H said it's like Avastin, which, as far as I understand, is given via I.V. and this clinical trial involves an oral drug. Avastin looks promising for ovarian cancer, but the research I've done says it shows promise mostly when used in conjunction with chemotherapy. I'd really rather avoid that form of treatment if I can.
The phase I clinical trial will study drug interactions. One arm of this study will take the inhibitor alone and one will take it in conjunction with diabetes, high blood pressure and heart disease medications to determine how they react together.
Okay, so if the drug company wants to see if it's safe to give the inhibitor to women with ovarian cancer AND another condition, they must be pretty confident in the inhibitor's efficacy. In that case, I think I want to be on the arm of the study that just gets the inhibitor. There are no guarantees what the interactions between the drug could be.
That's if I even qualify to be part of the study. My tumour has to grow at least 0.3 mm. Given the cancer-filled ascities sloshing around in my abdomen I don't think that should be a problem, but it feels wrong to hope my tumour will grow. Ugh.
Of course, my details may also be a bit off because the information about the study parameters was thrown at us as we were trying to absorb the news the fluid is increasing and therefore the cancer is coming back.
Another thought circling my mind is what other clinical trials are out there? Dr. H is confident this is the best option for me right now, but I'd like to know what other studies are recruiting just so I have all the information. I've looked at various study parameters on the Internet, but quickly got overwhelmed. I'll keep looking and may reach out to some of my contacts in the research lab here in London to see if they have any clinical trial details to share with me.
I think part of my frustration stems from the fact I won't know any more details until the end of the month. So again, my family and I live in a state of flux. As a result, I feel I can't wholeheartedly commit to anything. I don't know how I'm going to feel next week and I certainly don't know what's going to happen next month. I know I have to take one day at a time, but man that's difficult to do long term.
I hate the constant stuggle with this stupid disease. I know it's the nature of this beast and that I'll probably be in treatment on and off for the rest of my life, but it doesn't mean I have to like it. I so desparately wish one of these clinical trials - and there are lots - will discover a way to slow down and hopefully stop this awful cancer.
My fingers are continually crossed.
Tina
So here are a few of the highlights plaguing my thoughts:
This clinical trial involves an angiogenesis inhibitor, which is a substance that inhibits the growth of new blood vessels. Cancer cells are rapidly growing cells whose blood supply to help them grow would be affected by this type of drug. But I don't know the name of the drug and my poking around the Internet hasn't yielded any potential names I could research. I wish I would have had the foresight to ask the drug's name.
Dr. H said it's like Avastin, which, as far as I understand, is given via I.V. and this clinical trial involves an oral drug. Avastin looks promising for ovarian cancer, but the research I've done says it shows promise mostly when used in conjunction with chemotherapy. I'd really rather avoid that form of treatment if I can.
The phase I clinical trial will study drug interactions. One arm of this study will take the inhibitor alone and one will take it in conjunction with diabetes, high blood pressure and heart disease medications to determine how they react together.
Okay, so if the drug company wants to see if it's safe to give the inhibitor to women with ovarian cancer AND another condition, they must be pretty confident in the inhibitor's efficacy. In that case, I think I want to be on the arm of the study that just gets the inhibitor. There are no guarantees what the interactions between the drug could be.
That's if I even qualify to be part of the study. My tumour has to grow at least 0.3 mm. Given the cancer-filled ascities sloshing around in my abdomen I don't think that should be a problem, but it feels wrong to hope my tumour will grow. Ugh.
Of course, my details may also be a bit off because the information about the study parameters was thrown at us as we were trying to absorb the news the fluid is increasing and therefore the cancer is coming back.
Another thought circling my mind is what other clinical trials are out there? Dr. H is confident this is the best option for me right now, but I'd like to know what other studies are recruiting just so I have all the information. I've looked at various study parameters on the Internet, but quickly got overwhelmed. I'll keep looking and may reach out to some of my contacts in the research lab here in London to see if they have any clinical trial details to share with me.
I think part of my frustration stems from the fact I won't know any more details until the end of the month. So again, my family and I live in a state of flux. As a result, I feel I can't wholeheartedly commit to anything. I don't know how I'm going to feel next week and I certainly don't know what's going to happen next month. I know I have to take one day at a time, but man that's difficult to do long term.
I hate the constant stuggle with this stupid disease. I know it's the nature of this beast and that I'll probably be in treatment on and off for the rest of my life, but it doesn't mean I have to like it. I so desparately wish one of these clinical trials - and there are lots - will discover a way to slow down and hopefully stop this awful cancer.
My fingers are continually crossed.
Tina
Sunday, July 3, 2011
Continually pudgy
I was doing well. I carefully watched what I ate and went to the gym three to four times a week. My willpower was strong, I proudly monitored the decreasing numbers on the scale and felt better in my clothes.
But being told my cancer was probably coming back during my doctor's appointment in May, promptly doused the flames on my determination to lose weight. After losing 19 lbs. in three months (and with only two people noticing), I lost my will. I figured what was the point.
I know I feel better when I'm losing weight, but it's a huge struggle for me. I have to measure everything and deny myself yummy treats most of the time. I read labels, track calories, and schedule every meal and snack. To be honest, it's a lot of work to get my body to shed pounds.
And if I'm going to fill up with fluid again anyway, which is completely out of my control, what's the point? If I'm going to get sick again, why should I bother?
To be honest, my mind jumps to posts from a couple of my blogger friends who died in the past six months. They both lamented the loss of ability to derive enjoyment from food. Neither one of them could eat much, if anything, near the end. One longed for a big, sloppy cheeseburger, yet could only consume liquids. If that's what it's going to be like near the end, I'm going to enjoy whatever the hell I want now.
I know, I'm not near the end, but those types of thoughts really stick with me. I love food and part of me says, damn it, enjoy it all while you can.
I should find a happy medium between eating well and eating everything. But quite honestly, I don't have the willpower for that right now. Maybe when my situation is more under control, I'll find it, but until then, where's the chocolate?
Tina
But being told my cancer was probably coming back during my doctor's appointment in May, promptly doused the flames on my determination to lose weight. After losing 19 lbs. in three months (and with only two people noticing), I lost my will. I figured what was the point.
I know I feel better when I'm losing weight, but it's a huge struggle for me. I have to measure everything and deny myself yummy treats most of the time. I read labels, track calories, and schedule every meal and snack. To be honest, it's a lot of work to get my body to shed pounds.
And if I'm going to fill up with fluid again anyway, which is completely out of my control, what's the point? If I'm going to get sick again, why should I bother?
To be honest, my mind jumps to posts from a couple of my blogger friends who died in the past six months. They both lamented the loss of ability to derive enjoyment from food. Neither one of them could eat much, if anything, near the end. One longed for a big, sloppy cheeseburger, yet could only consume liquids. If that's what it's going to be like near the end, I'm going to enjoy whatever the hell I want now.
I know, I'm not near the end, but those types of thoughts really stick with me. I love food and part of me says, damn it, enjoy it all while you can.
I should find a happy medium between eating well and eating everything. But quite honestly, I don't have the willpower for that right now. Maybe when my situation is more under control, I'll find it, but until then, where's the chocolate?
Tina
Saturday, July 2, 2011
Melancholy Tina
Today is the first day I've had to just be since we officially heard the news my cancer is coming back. A small part of me feels angry. I am so mad this is happening yet again. I'm sure this anger could be useful in the future, but today, not so much.
But big parts of my heart and soul are so very, very sad. I'm so melancholy I'm practically listless. Conversation is even a chore for me today. This morning, Michael asked me if I was angry with him. No, I'm not angry at my wonderful husband. I'm afraid of leaving him.
Nothing is wrong and everything is.
I feel bloated more often now that I know the ascities is sloshing and growing in my abdomen. Symptoms like tenderness and gas that I tried to attribute to my hernia and, well, gas are probably the fluid pushing up on my stomach and abominal cavity.
It's a long weekend and Michael, Noah and I are house and dog sitting in Port Franks - at the spa. You'd think that would make me joyously happy. But I'm not. It's as though the waves of depression are washing up on my beach and I'm just an inch away from their frothy foam. They're trying to pull me into their watery depths and I don't have a lot of energy to resist.
Speaking of the lake, the water is freezing and during the key beach times it's packed because it's a long weekend. So we've been hanging out around the house. And that's fine with me.
I know these words and down emotions may concern some of you, but I will be okay. This is just a step on the path. My way of processing before moving forward.
Your blue friend,
Tina
But big parts of my heart and soul are so very, very sad. I'm so melancholy I'm practically listless. Conversation is even a chore for me today. This morning, Michael asked me if I was angry with him. No, I'm not angry at my wonderful husband. I'm afraid of leaving him.
Nothing is wrong and everything is.
I feel bloated more often now that I know the ascities is sloshing and growing in my abdomen. Symptoms like tenderness and gas that I tried to attribute to my hernia and, well, gas are probably the fluid pushing up on my stomach and abominal cavity.
It's a long weekend and Michael, Noah and I are house and dog sitting in Port Franks - at the spa. You'd think that would make me joyously happy. But I'm not. It's as though the waves of depression are washing up on my beach and I'm just an inch away from their frothy foam. They're trying to pull me into their watery depths and I don't have a lot of energy to resist.
Speaking of the lake, the water is freezing and during the key beach times it's packed because it's a long weekend. So we've been hanging out around the house. And that's fine with me.
I know these words and down emotions may concern some of you, but I will be okay. This is just a step on the path. My way of processing before moving forward.
Your blue friend,
Tina
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