Now I know why I feel so tired, shaky and weak (basically like crap), my hemoglobin is only 76. Normal is between 120 and 140. That's bad enough they scheduled me for a blood transfusion tomorrow. I'll get two units of donated blood (hopefully from someone with really high hemoglobin) over three hours. That should perk me up.
As for the rest of the answers, I don't have them because Dr. W is at a conference until mid next week. Dr. S said I may have to go back to the weekly chemo schedule to combat the ascities. That would suck, but if it's what I've got to do to beat back this beast called cancer, it's what I've got to do.
So transfusion tomorrow and chemo on Monday. Michael's high school reunion this weekend. Maybe the blood will boost my energy levels enough I can actually dance a little bit tomorrow night. No promises (because right now I couldn't dance if my life depended on it), but we'll see.
Tina
Thursday, May 31, 2012
Appointment day
It's appointment day. Time to ask what the heck is going on and figure out what I need to do about it. I'm so disappointed the ascities has returned with my new treatment schedule. I really want to stay on the once-every-three-weeks timetable. But I don't think I'll be able to if it means I bloat up every three weeks.
I don't know what that means. I don't know my options. I guess I'll find out today.
What really confuses me is that my CA-125 is 60 (yay!) but I've got a build up of ascities. That doesn't make sense to me. Unfortunately, the fluid is pressing on my stomach, preventing eating and causing vomiting again.
I'm also really tired all the time. Do I have low blood counts or are my vitamin levels off? I may need to ask Dr. W to run some tests. I should feel better during week three after chemo.
I have my next chemo on Monday instead of Friday because Michael's high school reunion is this weekend and I want to be able to go to that. So I bumped the timetable a little bit.
So I'll provide all the information, ask all the questions and see what plan my doc recommends. I'm nervous about the appointment. But I have to face the music and figure out what's going on.
Tina
I don't know what that means. I don't know my options. I guess I'll find out today.
What really confuses me is that my CA-125 is 60 (yay!) but I've got a build up of ascities. That doesn't make sense to me. Unfortunately, the fluid is pressing on my stomach, preventing eating and causing vomiting again.
I'm also really tired all the time. Do I have low blood counts or are my vitamin levels off? I may need to ask Dr. W to run some tests. I should feel better during week three after chemo.
I have my next chemo on Monday instead of Friday because Michael's high school reunion is this weekend and I want to be able to go to that. So I bumped the timetable a little bit.
So I'll provide all the information, ask all the questions and see what plan my doc recommends. I'm nervous about the appointment. But I have to face the music and figure out what's going on.
Tina
Tuesday, May 29, 2012
Before cancer
A couple of weeks ago, I read a blog by a woman who was mourning her life before cancer (I can't find the blog any more or I'd link to it). That thought has raced around in my head since I read her insights and realized I too am mourning old Tina.
I miss her: The woman who:
I miss before cancer Tina. She used to skip, laugh, smile and be an energetic woman. Her biggest worries were projects at work and her son's behavioural issues. She was a much more enjoyable person. Damn cancer.
Tina
I miss her: The woman who:
- Had ambition, gumption, energy, interest
- Was interesting
- Could still do cartwheels on the front lawn with her daughter. (Now I'm afraid to try for fear of breaking my nose.)
- Would inwardly squeal with delight over small victories or joys. (Maybe I just haven't found any of those lately.)
- Wasn't afraid every time her body twitched, changed, bloated or hurt
- Didn't need to nap every day
- Didn't think about dying
- Was physically strong. (I used to be able to do full plank push ups and now I can't even do the ones from my knees.)
- Was mentally strong
- Contributed to society (by working at a job I liked)
- Socialized with friends and could stay up past 9 p.m.
- Could make longer-term plans for vacations or weekends or even dinners
- Didn't have to plan life around a chemo schedule and the days of bad side effects
- Wasn't depressed
I miss before cancer Tina. She used to skip, laugh, smile and be an energetic woman. Her biggest worries were projects at work and her son's behavioural issues. She was a much more enjoyable person. Damn cancer.
Tina
Monday, May 28, 2012
Damn ascities
I'm worried.
I seem to be bloated and filling up with ascities again. My belly seems bigger and my stomach's capacity to eat and drink seems smaller. My mind is racing with fear the fluid is coming back. That means the treatment isn't working like it should be. The chemo should be shrinking the tumours and shutting off their capacity to produce fluid.
My CA-125 was 60! I've been in treatment almost constantly over the past few months (it's only these last couple of weeks when I've had a break). WTF!?
I don't understand. I'll be looking to Dr. W for answers when I see him on Thursday.
But for now I will try not to worry too much and enjoy this last week before I have chemo again.
Tina
I seem to be bloated and filling up with ascities again. My belly seems bigger and my stomach's capacity to eat and drink seems smaller. My mind is racing with fear the fluid is coming back. That means the treatment isn't working like it should be. The chemo should be shrinking the tumours and shutting off their capacity to produce fluid.
My CA-125 was 60! I've been in treatment almost constantly over the past few months (it's only these last couple of weeks when I've had a break). WTF!?
I don't understand. I'll be looking to Dr. W for answers when I see him on Thursday.
But for now I will try not to worry too much and enjoy this last week before I have chemo again.
Tina
Friday, May 25, 2012
The nap
Soft sheets, a fluffy pillow and a quiet room. Those are the ingredients for a good nap. Oh, and a mind that will shut down and let my body drift off into slumberland. Sometimes these factors combine perfectly and I get some much-needed shut eye and other times I toss and turn, with no rejeuvenating sleep reward.
I've become a big fan of the nap. Mostly because I need them so desperately, at least at the present time. If I don't get some rest in the middle of the day, I'm dragging my butt by about 4 p.m. and, yawning and nodding off by around 7 p.m. It's quite pathetic.
I never used to nap. In fact, when I worked midnights and had to sleep during the day, I was never a fan. I felt (and still do to a certain degree) that I'm wasting the sunshine hours, which are the best, of the day. I feel like I'm ducking out of life.
But I need the sleep. My body needs to heal and slumber is the best way to do it. So I've lovingly adopted the nap, with its soft blankies and cool pillows as my necessary friend.
Tina
I've become a big fan of the nap. Mostly because I need them so desperately, at least at the present time. If I don't get some rest in the middle of the day, I'm dragging my butt by about 4 p.m. and, yawning and nodding off by around 7 p.m. It's quite pathetic.
I never used to nap. In fact, when I worked midnights and had to sleep during the day, I was never a fan. I felt (and still do to a certain degree) that I'm wasting the sunshine hours, which are the best, of the day. I feel like I'm ducking out of life.
But I need the sleep. My body needs to heal and slumber is the best way to do it. So I've lovingly adopted the nap, with its soft blankies and cool pillows as my necessary friend.
Tina
Wednesday, May 23, 2012
Unrealistic expectations
I'm frustrated again. It doesn't seem to take much. I guess my expectations are too high. Or I'm just so hopeful for improvements that any setback leaves me feeling down.
I woke up this morning with a doozy of a headache, a little dizziness and what feels like a head cold. "No," my inner voice screamed. I'm not supposed to be sliding backwards down the "I feel good" staircase. I'm supposed to keep climbing a step every day, feeling better and better until I have to go to treatment again.
Boy am I unrealistic. Even the healthiest of people don't feel good every day. Then I have the complications of dropping blood counts, a compromised immune system and a body that's been battered around by chemotherapy for the past six and a half months. And here I feel disappointed that each day I'm not better, stronger, faster, like some superhero or Steve Austin (the Six Million Dollar Man - ooooh, dating myself).
Don't get me wrong, I feel much better than this time last week when I was just getting over the worst of the post-chemo side effects. I'm thankful for the increased energy and interest in the world around me. But I'm bummed I'm fighting a cold and am still incredibly tired (can you say daily naps?). I want to be more normal with more energy.
But here I am being unrealistic again. I won't recover as quickly as I used to before. It's only my first week post chemo. It's also my first three-week cycle where my body has a chance to recover. I'm expecting too much, too soon. Then I get disappointed with myself. I feel I should be able to do and accomplish more.
It's hard being in this position, especially when you're someone with high expectations, like me. I have to cut myself some slack and accept it's okay to lay down with a book or take a nap when the mood strikes. Cancer is still wreaking havoc in my body and I have it, along with the lingering side effects of the treatment, with which to contend. Yet, I'm expecting myself to jump back into life with both feet the first week I don't have treatment. Talk about pressure.
Realistically, I shouldn't have these types of expectations until I'm well out of treatment, with no more chemotherapy lingering in my body and time for my cells and systems to recover. We're talking months post treatment, not one week after chemotherapy, while I'm still in the midst of a treatment plan.
I guess today's blog turned into more of a journal entry to myself about squelching the unrealistic expectations I have. But it also demonstrates how I struggle every day. While there is no "right" way to fight cancer, I think many survivors want to do it with strength, grace and determination. Yet, when I feel weak, tired and weary, I feel I'm letting my loved ones down. I'm not fighting hard enough. I'm not being strong enough.
It's hard to watch my family carry on with normal life and only be able to participate in part of it. It's challenging to watch my husband work around the house and yard, and not be able to help because I don't have the energy. It's difficult not to be fully engaged in the life I once had. So it's hard to cut myself the slack I so desperately need to lessen the guilt.
Yes, I feel guilty, not so much for having cancer (because that is outside my control), but for what it and its treatment does to me. For not being able to be fully engaged in raising my kids, work outside the home, contribute to the household budget, do the tasks and chores required to maintain the house, and be a good wife, mother and friend.
I know I shouldn't feel guilty because the chemotherapy and its side effects are also outside my control, but it goes back to the idea of fighting cancer the "right" way and needing to be strong. I know the guilt also comes from my good old Catholic upbringing where we can feel guilty about just about anything.
Cancer is a struggle mentally, physically, emotionally and spiritually. I'm plodding along the best I can, trying to be as realistic as possible and be kind to myself. But it's not easy. Nothing about this whole journey is easy. But these are the cards I've been dealt and I have to try to make the best of them.
So I want say thank you for all the wonderful people in my life who let me know I'm not alone in this struggle. I'm grateful for the support of my family, who love me unconditionally - sick or not. I say thanks for the lessons I've learned along the way, including taking advantage of each day and finding happiness in the little things in life. I'm also grateful for the strength God has given me to this point to fight this nasty disease. I'm also blessed for the time I've had to live. This disease is aggressive and could have taken me quickly. I'm lucky I have had months and years to spend with those I love.
Tina
I woke up this morning with a doozy of a headache, a little dizziness and what feels like a head cold. "No," my inner voice screamed. I'm not supposed to be sliding backwards down the "I feel good" staircase. I'm supposed to keep climbing a step every day, feeling better and better until I have to go to treatment again.
Boy am I unrealistic. Even the healthiest of people don't feel good every day. Then I have the complications of dropping blood counts, a compromised immune system and a body that's been battered around by chemotherapy for the past six and a half months. And here I feel disappointed that each day I'm not better, stronger, faster, like some superhero or Steve Austin (the Six Million Dollar Man - ooooh, dating myself).
Don't get me wrong, I feel much better than this time last week when I was just getting over the worst of the post-chemo side effects. I'm thankful for the increased energy and interest in the world around me. But I'm bummed I'm fighting a cold and am still incredibly tired (can you say daily naps?). I want to be more normal with more energy.
But here I am being unrealistic again. I won't recover as quickly as I used to before. It's only my first week post chemo. It's also my first three-week cycle where my body has a chance to recover. I'm expecting too much, too soon. Then I get disappointed with myself. I feel I should be able to do and accomplish more.
It's hard being in this position, especially when you're someone with high expectations, like me. I have to cut myself some slack and accept it's okay to lay down with a book or take a nap when the mood strikes. Cancer is still wreaking havoc in my body and I have it, along with the lingering side effects of the treatment, with which to contend. Yet, I'm expecting myself to jump back into life with both feet the first week I don't have treatment. Talk about pressure.
Realistically, I shouldn't have these types of expectations until I'm well out of treatment, with no more chemotherapy lingering in my body and time for my cells and systems to recover. We're talking months post treatment, not one week after chemotherapy, while I'm still in the midst of a treatment plan.
I guess today's blog turned into more of a journal entry to myself about squelching the unrealistic expectations I have. But it also demonstrates how I struggle every day. While there is no "right" way to fight cancer, I think many survivors want to do it with strength, grace and determination. Yet, when I feel weak, tired and weary, I feel I'm letting my loved ones down. I'm not fighting hard enough. I'm not being strong enough.
It's hard to watch my family carry on with normal life and only be able to participate in part of it. It's challenging to watch my husband work around the house and yard, and not be able to help because I don't have the energy. It's difficult not to be fully engaged in the life I once had. So it's hard to cut myself the slack I so desperately need to lessen the guilt.
Yes, I feel guilty, not so much for having cancer (because that is outside my control), but for what it and its treatment does to me. For not being able to be fully engaged in raising my kids, work outside the home, contribute to the household budget, do the tasks and chores required to maintain the house, and be a good wife, mother and friend.
I know I shouldn't feel guilty because the chemotherapy and its side effects are also outside my control, but it goes back to the idea of fighting cancer the "right" way and needing to be strong. I know the guilt also comes from my good old Catholic upbringing where we can feel guilty about just about anything.
Cancer is a struggle mentally, physically, emotionally and spiritually. I'm plodding along the best I can, trying to be as realistic as possible and be kind to myself. But it's not easy. Nothing about this whole journey is easy. But these are the cards I've been dealt and I have to try to make the best of them.
So I want say thank you for all the wonderful people in my life who let me know I'm not alone in this struggle. I'm grateful for the support of my family, who love me unconditionally - sick or not. I say thanks for the lessons I've learned along the way, including taking advantage of each day and finding happiness in the little things in life. I'm also grateful for the strength God has given me to this point to fight this nasty disease. I'm also blessed for the time I've had to live. This disease is aggressive and could have taken me quickly. I'm lucky I have had months and years to spend with those I love.
Tina
Monday, May 21, 2012
Depression and joy
I know I haven't posted in a few days, but I've been out there living life. I started feeling better Thursday night and seem to be getting progressively better each day. So I've been taking advantage of that.
On Friday, I ran some errands including getting some groceries. You ever notice you can almost continually use something at the grocery store and when you go in to pick up an item or two, you end up with at least half a cart full of food items you suddenly need, want or find on sale. Each trip to the grocery store suddenly costs me $100. But at least we can eat well.
Friday also brought a trip to my family doctor's office to assess how I'm doing on the anti-depressants. Apparently crying jags over breakfast are reason to up the dose because she doubled it. She also theorized reasons for my depression, all of which make perfect sense to me.
I explained the cycle I'd recently been sucked into: I am tired, so I don't do anything, but I'm bored, but I don't feel like doing anything, so I feel even more bored and unproductive, but nothing appeals to me, so I don't do anything.
She confirmed that's depression. I realized I have to try to incorporate more of the things I enjoy into life and try to find the joy in what is possible right now. Part of my problem is I now have this expectation that I'm dying so I should be living life to the fullest, and doing all the wonderous things and activities there are to do. But I'm not physically, mentally, socially, financially or even psychologically capable of doing some of those things (take a big trip, go whitewater rafting, etc.).
With me being in treatment, I also feel like I'm waiting around for life to begin. Yet this is my life and I have to find the good things in it each and every day. Although I still feel like I'm in limbo to a certain degree because I'm still in treatment indefinitely, having more time off between treatments will help me find time to do enjoyable things instead of always fighting the disease.
I got a little giddy feeling on Saturday, when I realized I felt pretty good and I still had at least two weeks to feel like this - or better - before I had to go back into treatment. That whole concept makes me smile.
So I've been engaged this weekend for the first time in a long time. I cleaned my house (it was disgusting), which gave me a big sense of accomplishment. I ran some errands, watched some Memorial Cup playoff hockey, watched episodes of a new and interesting television series and created some meals. This morning, I think I'll bake some muffins. Tonight I'll go watch my daughter's first soccer game of the season. (If I was still in weekly taxol treatments, today would be a bad day and I wouldn't be headed to the soccer field.) Yes, I'm still tired (but less weak), but like I said, I'm trying to engage more in life.
Yesterday, Michael and I even went out to dinner to celebrate our 17th wedding anniversary. He's the love of my life and I'd marry him all over again - then, now, tomorrow. Luckily, he says the same thing about me, even knowing how cancer attacks our lives. I'm blessed to have him and I love him with all I am. Seventeen years. Wow! Let's hope for many more.
Well, this brief update turned into an introspective piece about finding joy in life at whatever stage. As I've said before, we don't get any dress rehersals. This is life. Make the most of it. I'm having a hard time following my own advice but I'm trying to get better at it; especially when I have more time when I feel good to do so.
Tina
On Friday, I ran some errands including getting some groceries. You ever notice you can almost continually use something at the grocery store and when you go in to pick up an item or two, you end up with at least half a cart full of food items you suddenly need, want or find on sale. Each trip to the grocery store suddenly costs me $100. But at least we can eat well.
Friday also brought a trip to my family doctor's office to assess how I'm doing on the anti-depressants. Apparently crying jags over breakfast are reason to up the dose because she doubled it. She also theorized reasons for my depression, all of which make perfect sense to me.
- A long-term illness can create negative endorphins in the body. Over a period of time, they can lead to depression.
- The paclitaxol could be causing depression. Usually doctors won't prescribe drugs to counteract the side effects of other drugs. But since I need the taxol to kill the cancer (and don't really have a choice in the matter), this is an exception to the rule.
- A family history could be the culprit, but I'm not aware of any relative who's been treated for depression.
I explained the cycle I'd recently been sucked into: I am tired, so I don't do anything, but I'm bored, but I don't feel like doing anything, so I feel even more bored and unproductive, but nothing appeals to me, so I don't do anything.
She confirmed that's depression. I realized I have to try to incorporate more of the things I enjoy into life and try to find the joy in what is possible right now. Part of my problem is I now have this expectation that I'm dying so I should be living life to the fullest, and doing all the wonderous things and activities there are to do. But I'm not physically, mentally, socially, financially or even psychologically capable of doing some of those things (take a big trip, go whitewater rafting, etc.).
With me being in treatment, I also feel like I'm waiting around for life to begin. Yet this is my life and I have to find the good things in it each and every day. Although I still feel like I'm in limbo to a certain degree because I'm still in treatment indefinitely, having more time off between treatments will help me find time to do enjoyable things instead of always fighting the disease.
I got a little giddy feeling on Saturday, when I realized I felt pretty good and I still had at least two weeks to feel like this - or better - before I had to go back into treatment. That whole concept makes me smile.
So I've been engaged this weekend for the first time in a long time. I cleaned my house (it was disgusting), which gave me a big sense of accomplishment. I ran some errands, watched some Memorial Cup playoff hockey, watched episodes of a new and interesting television series and created some meals. This morning, I think I'll bake some muffins. Tonight I'll go watch my daughter's first soccer game of the season. (If I was still in weekly taxol treatments, today would be a bad day and I wouldn't be headed to the soccer field.) Yes, I'm still tired (but less weak), but like I said, I'm trying to engage more in life.
Yesterday, Michael and I even went out to dinner to celebrate our 17th wedding anniversary. He's the love of my life and I'd marry him all over again - then, now, tomorrow. Luckily, he says the same thing about me, even knowing how cancer attacks our lives. I'm blessed to have him and I love him with all I am. Seventeen years. Wow! Let's hope for many more.
Well, this brief update turned into an introspective piece about finding joy in life at whatever stage. As I've said before, we don't get any dress rehersals. This is life. Make the most of it. I'm having a hard time following my own advice but I'm trying to get better at it; especially when I have more time when I feel good to do so.
Tina
Thursday, May 17, 2012
New terminology
Sometimes in life you encounter steps you take or boundaries you cross that change your viewpoint. I crossed the threshold of one of those yesterday when I filled out some paperwork.
I received a package in the mail last week from my disability company with a thick stack of forms. I had just returned from chemo and only gave them a cursory glance. I wondered why I was receiving them now and whether it was in my best interest to apply for these benefits, but gave it little thought and threw the paperwork on my desk to deal with this week.
Yesterday I took another look to ascertain the forms are to apply for disability benefits from the Canada Pension Plan (CPP) . From what I can gather, if I'm approved by the government, this benefit would provide a monthly sum of money for both me and my kids.
The terminology that changed my perception of my situation and pushed me over that new boundary was that I'm considered disabled and/or terminally ill. In the back of my mind, I may have mulled these categorizations over, but filling out forms and making it official with the government is a whole different thing. It's almost admitting I won't ever get better - and in actuality I may not - and I'm not sure I'm prepared to accept that just yet.
If I'm considered disabled or terminally ill by the government, I can get payments from the CPP into which I've contributed for years and years. And although I don't necessarily want to admit to those new labels, I want to supplement my family's income. Besides, I will probably never live to see age 65 when those CPP benefits would kick in, so I may as well take the money now and make life a little easier.
I still have some details to figure out in terms of how this affects my long-term disability, retroactive payments, etc., but I'll seek out those answers and figure out what's best for me. Part of me is excited we could have extra funds. Part of me is gleeful I'll actually get a portion of what I deserve from the government (because chances are they would have just been able to keep all the money I've given them over the years).
But all this means I must now consciously consider myself disabled (or terminally ill). A big step in this journey called cancer.
Tina
I received a package in the mail last week from my disability company with a thick stack of forms. I had just returned from chemo and only gave them a cursory glance. I wondered why I was receiving them now and whether it was in my best interest to apply for these benefits, but gave it little thought and threw the paperwork on my desk to deal with this week.
Yesterday I took another look to ascertain the forms are to apply for disability benefits from the Canada Pension Plan (CPP) . From what I can gather, if I'm approved by the government, this benefit would provide a monthly sum of money for both me and my kids.
The terminology that changed my perception of my situation and pushed me over that new boundary was that I'm considered disabled and/or terminally ill. In the back of my mind, I may have mulled these categorizations over, but filling out forms and making it official with the government is a whole different thing. It's almost admitting I won't ever get better - and in actuality I may not - and I'm not sure I'm prepared to accept that just yet.
If I'm considered disabled or terminally ill by the government, I can get payments from the CPP into which I've contributed for years and years. And although I don't necessarily want to admit to those new labels, I want to supplement my family's income. Besides, I will probably never live to see age 65 when those CPP benefits would kick in, so I may as well take the money now and make life a little easier.
I still have some details to figure out in terms of how this affects my long-term disability, retroactive payments, etc., but I'll seek out those answers and figure out what's best for me. Part of me is excited we could have extra funds. Part of me is gleeful I'll actually get a portion of what I deserve from the government (because chances are they would have just been able to keep all the money I've given them over the years).
But all this means I must now consciously consider myself disabled (or terminally ill). A big step in this journey called cancer.
Tina
Wednesday, May 16, 2012
Straddling the steps
I'm not sure if I'm headed up or down, but right now I seem to be straddling the steps of the side effects staircase. Last night, I bumped down a few of the tiers, feeling heavy and withdrawn. This morning, I feel teary and weak. My frustration on my physical and mental condition must mean I'm sliding just a little bit further down towards the darkness of the basement.
But it's Wednesday, my mind tells me. You should be getting better by now. To top it off, my brain is whirling and awake, thinking of all the chores and tasks I could/should be doing. My mind has a whole to-do list created because the messiness and clutter in my house is starting to wear on me. The seasons are changing, I should be storing away the winter coats, washing down the doors, and sweeping up the crusted old leaves that have gathered in the cracks by the front step. To say nothing of scrubbing the tub that hasn't seen cleanser in a couple of weeks and dusting the bunnies gathered on my picture frames.
I know in the end, it really doesn't matter, but at times I can't get my mind to let go. We planned to have a garage sale this spring to get rid of some of the clutter, but my health situation (and Michael's too for that matter) have prevented us even comtemplating such a big undertaking. We have tons of stuff we don't need and a garage sale would be great. It's just a matter of when and how.
My biggest problem today is weakness. My legs are shaky, my arms are heavy and my mind is delving into the dark recesses of sadness. I hate feeling so weak. I despise being so unproductive. I'm trying to move on but I think my bed will be coaxing me back at some point this morning. Even though it's Wednesday - and I should be getting better - I have to listen to my body and only do what I can.
Hopefully, this will be the last day and I'll ascend the steps to be a stronger, cheerier, more productive person. I only hope and pray that will be my reality and not just my dream.
Tina
But it's Wednesday, my mind tells me. You should be getting better by now. To top it off, my brain is whirling and awake, thinking of all the chores and tasks I could/should be doing. My mind has a whole to-do list created because the messiness and clutter in my house is starting to wear on me. The seasons are changing, I should be storing away the winter coats, washing down the doors, and sweeping up the crusted old leaves that have gathered in the cracks by the front step. To say nothing of scrubbing the tub that hasn't seen cleanser in a couple of weeks and dusting the bunnies gathered on my picture frames.
I know in the end, it really doesn't matter, but at times I can't get my mind to let go. We planned to have a garage sale this spring to get rid of some of the clutter, but my health situation (and Michael's too for that matter) have prevented us even comtemplating such a big undertaking. We have tons of stuff we don't need and a garage sale would be great. It's just a matter of when and how.
My biggest problem today is weakness. My legs are shaky, my arms are heavy and my mind is delving into the dark recesses of sadness. I hate feeling so weak. I despise being so unproductive. I'm trying to move on but I think my bed will be coaxing me back at some point this morning. Even though it's Wednesday - and I should be getting better - I have to listen to my body and only do what I can.
Hopefully, this will be the last day and I'll ascend the steps to be a stronger, cheerier, more productive person. I only hope and pray that will be my reality and not just my dream.
Tina
Tuesday, May 15, 2012
Lethargy Tuesday
It's Tuesday. Tuesdays after chemo are usually never good. Today seems just a little bit better than previous weeks. Perhaps the anti-depressants have finally kicked in and are preventing the giant drop into the basement of depression. I feel lethargic, tired, have no energy and no ambition, but the overwhelming feeling of heaviness isn't weighing on me - at least not right now. And I hope it stays away.
Quite honestly, I'm waiting for the other shoe to drop; for the bigger side effects from the larger dose of taxol on Friday to kick in. I'm waiting for the bone pain. I'm anticipating the depression. Yet, so far, with naps, rest and lots of anti-social behaviour, I seem to be doing relatively okay. My poor family suffers from these reactions, but they continue to be incredibly understanding.
Hopefully another day or two of this lethargy and I can come back out into a world that's interesting and captivating - and I can stay there for a couple of weeks before having to do it all again. I just want some time to live between fighting and that's what me and the doc are striving for now.
So I'm biding my time until I once again enjoy the sunshine with which we've been blessed. One day at a time.
Tina
Quite honestly, I'm waiting for the other shoe to drop; for the bigger side effects from the larger dose of taxol on Friday to kick in. I'm waiting for the bone pain. I'm anticipating the depression. Yet, so far, with naps, rest and lots of anti-social behaviour, I seem to be doing relatively okay. My poor family suffers from these reactions, but they continue to be incredibly understanding.
Hopefully another day or two of this lethargy and I can come back out into a world that's interesting and captivating - and I can stay there for a couple of weeks before having to do it all again. I just want some time to live between fighting and that's what me and the doc are striving for now.
So I'm biding my time until I once again enjoy the sunshine with which we've been blessed. One day at a time.
Tina
Monday, May 14, 2012
A resounding success
It was an over-the-top successful year for The Run for Ovarian Cancer. The event, which took place yesterday, raised over $180,000, bringing the 10-year total for the event to over $1 million raised for ovarian cancer research right here in London.
Team Tina - of whom I'm so proud - was over 49 members strong. The team raised over $10,000 online and I heard that we reached a much higher number than that with donations brought in yesterday. I'm so thrilled and honoured by all the wonderful support Team Tina provides to me. They're my village. The adage says, it takes a village to raise a child, but I also think it takes my village to fight ovarian cancer. It's a challenging and sometimes lonely fight, but knowing I have the support of all these amazing people make it a little easier.
I loved the hugs yesterday. I loved seeing everyone who came out to run, walk, take photos or cheer. The weather even cleared so we didn't get rained on but experienced perfect running weather; just a little cool and overcast. But then the sun came out to help celebrate the remainder of Mother's Day.
A big thank you to everyone who supported the run. I'm externally grateful. You're all amazing and I am lucky to have you in my life.
Tina
Team Tina - of whom I'm so proud - was over 49 members strong. The team raised over $10,000 online and I heard that we reached a much higher number than that with donations brought in yesterday. I'm so thrilled and honoured by all the wonderful support Team Tina provides to me. They're my village. The adage says, it takes a village to raise a child, but I also think it takes my village to fight ovarian cancer. It's a challenging and sometimes lonely fight, but knowing I have the support of all these amazing people make it a little easier.
I loved the hugs yesterday. I loved seeing everyone who came out to run, walk, take photos or cheer. The weather even cleared so we didn't get rained on but experienced perfect running weather; just a little cool and overcast. But then the sun came out to help celebrate the remainder of Mother's Day.
A big thank you to everyone who supported the run. I'm externally grateful. You're all amazing and I am lucky to have you in my life.
Tina
Saturday, May 12, 2012
Good news
Yesterday, chemo took about five hours, but was uneventful. And during the process, I got good news, which makes this whole ordeal more palatable.
My CA-125 is down to 60! That means the taxol is working on the tumours. Normal is under 35, but I'm not sure I'll ever reach that magic number again. Being at 60 is amazing and the news made me tear up yesterday.
Just to give you some perspective, it was in the 400s before I started treatment. It dropped to 223 on March 8 with the cisplatin and gemcitabine treatments (but it took a long time to do that). Then a few weeks ago, after starting the taxol, it dropped to around 125. And now it's 60!
Part of me now second guesses switching the treatment to the every three week regimen, but as I reasoned in my blog yesterday, I have to have a life. I need quality in it and not just quantity. And who knows, maybe the bigger doses every three weeks will work just as effectively. Time will tell.
As for how I'm feeling today after that bigger dose of taxol, I'm experiencing a little bit of nausea/stomach pain. But I had a good night's sleep and am feeling a little less tired. I know the steroids are contributing to pumping me up and I hope they help during the Run for Ovarian Cancer tomorrow. I'm excited about seeing everyone, but nervous about my energy levels. So please forgive me if I seem a bit tired and distracted.
I love every member of Team Tina (and all who donated) for your support and participation. You rock!
Tina
My CA-125 is down to 60! That means the taxol is working on the tumours. Normal is under 35, but I'm not sure I'll ever reach that magic number again. Being at 60 is amazing and the news made me tear up yesterday.
Just to give you some perspective, it was in the 400s before I started treatment. It dropped to 223 on March 8 with the cisplatin and gemcitabine treatments (but it took a long time to do that). Then a few weeks ago, after starting the taxol, it dropped to around 125. And now it's 60!
Part of me now second guesses switching the treatment to the every three week regimen, but as I reasoned in my blog yesterday, I have to have a life. I need quality in it and not just quantity. And who knows, maybe the bigger doses every three weeks will work just as effectively. Time will tell.
As for how I'm feeling today after that bigger dose of taxol, I'm experiencing a little bit of nausea/stomach pain. But I had a good night's sleep and am feeling a little less tired. I know the steroids are contributing to pumping me up and I hope they help during the Run for Ovarian Cancer tomorrow. I'm excited about seeing everyone, but nervous about my energy levels. So please forgive me if I seem a bit tired and distracted.
I love every member of Team Tina (and all who donated) for your support and participation. You rock!
Tina
Friday, May 11, 2012
Change is good
After some frank discussion with Dr. W yesterday about quality versus quantity of life yesterday, we've decided to change my treatment plan - starting today. Instead of getting paxlitaxol every week for three weeks with one week off, I will now get a larger dose of the same chemotherapy once every three (or maybe even four) weeks.
While the research indicates the weekly taxol treatments can be more effective at fighting the cancer, my experience indicates I don't have much of a life when I am on this treatment regimen. I feel good only a few days a week before I have to start all over again. The side effects are harsh, and affect me both physical and mentally. And quite honestly, the whole experience is wearing me out.
Dr. W also said he has a woman under his care who is doing the three-week treatment plan and is doing well. So I have to have hope this will be good for me from both a quality of life and treating the cancer standpoint.
As Dr. W said, there is no point in fighting for my life if I'm not enjoying that life. He said he could give me drugs that would kill the cancer, but it would also kill me in the process. It's about finding the right balance.
While I'm happy - and relieved - we're working towards me having more feel-good days, I'm a little worried I'm not doing all I can to beat the cancer. But I have to get it through my head, this is a chronic disease, and that it's about managing it and still living as opposed to beating it.
I'll still have the yucky side effects (and perhaps even a few more), but once they're gone, I should have more time to recover and more days to feel good. Time will tell how this will all go.
I don't know if it's psychosomatic and my mind is playing tricks on me because I don't want to have chemo, but I didn't feel well yesterday and I'm a bit off this morning. I've also woken very early the past two mornings - 4:36 a.m. this morning - probably due to anxiety. I'm sure part of it is dreading the chemo and a portion of it is all the things I feel I have to do.
Tara is off to a Girl Guide camp tonight for the weekend (and I'm worried about her being cold and picking her up early on Sunday for the run), getting stuff ready for Mother's Day, being well enough for The Run for Ovarian Cancer on Sunday, etc. I know I'm trying to be superwoman and if stuff doesn't happen, it's not the end of the world, but I want to make it happen. It's hard to let go of control. But I have to accept I can only do what I can - even if that includes just sitting on a lawnchair at the run on Sunday.
It's off to chemo today at 10 a.m. I hope to be able to rest and sleep while I'm getting my dose of the cancer-killing chemical. If you can spare a prayer or some good karma, send it my way around that time. I think I could use it.
Tina
While the research indicates the weekly taxol treatments can be more effective at fighting the cancer, my experience indicates I don't have much of a life when I am on this treatment regimen. I feel good only a few days a week before I have to start all over again. The side effects are harsh, and affect me both physical and mentally. And quite honestly, the whole experience is wearing me out.
Dr. W also said he has a woman under his care who is doing the three-week treatment plan and is doing well. So I have to have hope this will be good for me from both a quality of life and treating the cancer standpoint.
As Dr. W said, there is no point in fighting for my life if I'm not enjoying that life. He said he could give me drugs that would kill the cancer, but it would also kill me in the process. It's about finding the right balance.
While I'm happy - and relieved - we're working towards me having more feel-good days, I'm a little worried I'm not doing all I can to beat the cancer. But I have to get it through my head, this is a chronic disease, and that it's about managing it and still living as opposed to beating it.
I'll still have the yucky side effects (and perhaps even a few more), but once they're gone, I should have more time to recover and more days to feel good. Time will tell how this will all go.
I don't know if it's psychosomatic and my mind is playing tricks on me because I don't want to have chemo, but I didn't feel well yesterday and I'm a bit off this morning. I've also woken very early the past two mornings - 4:36 a.m. this morning - probably due to anxiety. I'm sure part of it is dreading the chemo and a portion of it is all the things I feel I have to do.
Tara is off to a Girl Guide camp tonight for the weekend (and I'm worried about her being cold and picking her up early on Sunday for the run), getting stuff ready for Mother's Day, being well enough for The Run for Ovarian Cancer on Sunday, etc. I know I'm trying to be superwoman and if stuff doesn't happen, it's not the end of the world, but I want to make it happen. It's hard to let go of control. But I have to accept I can only do what I can - even if that includes just sitting on a lawnchair at the run on Sunday.
It's off to chemo today at 10 a.m. I hope to be able to rest and sleep while I'm getting my dose of the cancer-killing chemical. If you can spare a prayer or some good karma, send it my way around that time. I think I could use it.
Tina
Wednesday, May 9, 2012
Back to reality, but thankful
Well, it's back to reality. Unfortunately, my real life is a lot harder to return to than many. I don't have the luxury of coming back from vacation to simply return to my job, organizing my kids, sorting through the paperwork and cleaning my house. While I still have the majority of those tasks on my to-do list, my reality involves returning to chemotherapy treatments. Given how much better I've been feeling, I'm dreading Friday.
But I have no choice. I have to keep chipping away at these tumours occupying my abdomen. I have to continue to blast them with the toxic chemicals of the chemo. And unfortunately, I have to continue to go through the terribly depressing side effects that come along with the whole thing.
I think the anti-depressants are working a bit. I've felt happier during the past few days. Of course, it could have been because I was on vacation in a sunny locale with my sister, reading books and relaxing. It could be that I escaped the harsh reality that is my life right now for just a little while. But hopefully, it's also the medication and I can be cheerier when I'm not plagued by the side effects and not quite so down when the chemo depression grips me. Time will tell because it takes about three weeks before the full effects of the medication take effect.
This morning I sit here, choosing to be thankful for the opportunity to get away with my wonderful. generous sister, that I had energy and stamina to do some shopping and dining out on the trip, and for the sunshine and warmth I experienced. I will enjoy these last few days of feeling pretty good and then go see Dr. W tomorrow and get my chemo on Friday.
Luckily, I feel okay for a few days after the blast of chemicals because The Run for Ovarian Cancer is this Sunday. As of this morning, Team Tina has 45 fabulous members and has raised (online only) over $6,500. The generous organization of London Life matches $6,000 of that. Woo hoo! A group of very supportive people at London Life did a ton of fundraising through activities and a penny drive, and I know many, many wonderfully generous people participated in these events. I'm so very grateful for all the hard work and the generosity. It's not too late to join the team or sponsor a runner by clicking on the link above.
So I guess I have even more to be thankful for than my Myrtle Beach vacation, I'm also blessed with the support of Team Tina and the generosity of all those who donate to the run. I'm thankful for the researchers who work hard every day to try to beat this disease. I'm grateful for the support of my family and friends that comes in many, many forms. For all those things, I'm a lucky woman.
Tina
But I have no choice. I have to keep chipping away at these tumours occupying my abdomen. I have to continue to blast them with the toxic chemicals of the chemo. And unfortunately, I have to continue to go through the terribly depressing side effects that come along with the whole thing.
I think the anti-depressants are working a bit. I've felt happier during the past few days. Of course, it could have been because I was on vacation in a sunny locale with my sister, reading books and relaxing. It could be that I escaped the harsh reality that is my life right now for just a little while. But hopefully, it's also the medication and I can be cheerier when I'm not plagued by the side effects and not quite so down when the chemo depression grips me. Time will tell because it takes about three weeks before the full effects of the medication take effect.
This morning I sit here, choosing to be thankful for the opportunity to get away with my wonderful. generous sister, that I had energy and stamina to do some shopping and dining out on the trip, and for the sunshine and warmth I experienced. I will enjoy these last few days of feeling pretty good and then go see Dr. W tomorrow and get my chemo on Friday.
Luckily, I feel okay for a few days after the blast of chemicals because The Run for Ovarian Cancer is this Sunday. As of this morning, Team Tina has 45 fabulous members and has raised (online only) over $6,500. The generous organization of London Life matches $6,000 of that. Woo hoo! A group of very supportive people at London Life did a ton of fundraising through activities and a penny drive, and I know many, many wonderfully generous people participated in these events. I'm so very grateful for all the hard work and the generosity. It's not too late to join the team or sponsor a runner by clicking on the link above.
So I guess I have even more to be thankful for than my Myrtle Beach vacation, I'm also blessed with the support of Team Tina and the generosity of all those who donate to the run. I'm thankful for the researchers who work hard every day to try to beat this disease. I'm grateful for the support of my family and friends that comes in many, many forms. For all those things, I'm a lucky woman.
Tina
Sunday, May 6, 2012
MB day 3
I'm taking each day as it comes. Yesterday was a great day for me physically. Angie and I spent the day by the pool, reading books and getting some natural vitamin D. Don't worry, I used some good sunscreen and spent at least half the time under the shade of the unbrella we staked out early.
It was a beautifully hot day and we had to take a dip in the pool every once in a while to cool off. It was the first time I was able to go swimming since last July and it felt glorious to feel the cool water caress my body as I breaststroked my way across the pool. Aaaaah, I love this port. And the incision sites are healing up nicely.
Last night we had the opportunity to see the bigger moon as it rose over the ocean. Apparently, the lunar orb was in such a position the full moon was supposed to look larger than usual. I didn't notice that it looked any bigger, but it was round and orange as it first rose over the cascading waves. It looked beautiful.
Then at about 9 p.m., we had a spectacular show of lightening and thunder with a heavy downpour. The cloudy weather continued into this morning and so we did a bit of shopping. But my stamina was sadly lacking today and I had to return to the hotel room for a nap. Unfortunately, I flew miles from home only to need to nap in the room during vacation. Sigh. Angie headed down to the pool for some of the spotty sunshine while I caught some zzzzzz. I felt much better after my nap and we picked up some Italian and dined in our room.
So long story short, I'm better and doing okay but not quite up to snuff. I tire easily and I'm popping cold medication to keep the sinus congestion at bay. The cold and its subsequent medication may also be contributing to the run down feelings. But compared to a week ago, I feel so much better.
So I take the good and bad feelings, and work with what I'm given. It's the best I can do. I need to enjoy what I can from this vacation because it's my week off from chemo and I need to build up my mental and physical stamina for when I head back to London and return to treatment (but I'm not going to think about that now).
From slightly overcast Myrtle Beach,
Tina
It was a beautifully hot day and we had to take a dip in the pool every once in a while to cool off. It was the first time I was able to go swimming since last July and it felt glorious to feel the cool water caress my body as I breaststroked my way across the pool. Aaaaah, I love this port. And the incision sites are healing up nicely.
Last night we had the opportunity to see the bigger moon as it rose over the ocean. Apparently, the lunar orb was in such a position the full moon was supposed to look larger than usual. I didn't notice that it looked any bigger, but it was round and orange as it first rose over the cascading waves. It looked beautiful.
Then at about 9 p.m., we had a spectacular show of lightening and thunder with a heavy downpour. The cloudy weather continued into this morning and so we did a bit of shopping. But my stamina was sadly lacking today and I had to return to the hotel room for a nap. Unfortunately, I flew miles from home only to need to nap in the room during vacation. Sigh. Angie headed down to the pool for some of the spotty sunshine while I caught some zzzzzz. I felt much better after my nap and we picked up some Italian and dined in our room.
So long story short, I'm better and doing okay but not quite up to snuff. I tire easily and I'm popping cold medication to keep the sinus congestion at bay. The cold and its subsequent medication may also be contributing to the run down feelings. But compared to a week ago, I feel so much better.
So I take the good and bad feelings, and work with what I'm given. It's the best I can do. I need to enjoy what I can from this vacation because it's my week off from chemo and I need to build up my mental and physical stamina for when I head back to London and return to treatment (but I'm not going to think about that now).
From slightly overcast Myrtle Beach,
Tina
Friday, May 4, 2012
Myrtle Beach
I am in Myrtle Beach with my sister, feeling better than I have in a long time. It's amazing really that I feel as well as I do considering how crappy I felt just two days ago. But I started to really improve yesterday and I today I feel almost normal.
I am sitting on our balcony, listening to the waves as they race towards the shore and admiring the pink and purple hue of the clouds. The sea birds are shrilly calling, looking for food and the lights just came on to illuminate the pier next to our resort.
I still don't have much of an appetite and I have a touch of the cold Michael's had for over a week, but those are minor inconveniences. The wonderful thing is I can expect to feel stronger and better with each passing day, so I will be able to enjoy this long weekend away. (I was so anxious about this vacation and my ability to participate in it that I was in tears earlier this week.)
We're taking each day as it comes and probably won't do anything strenuous - a little shopping, lounging on the beach and by the pool, reading, dining on local delicacies, people watching, etc. We may even take a drive and see a little more of the area. Who knows. It's a casual type of vacation, which is what makes it so great.
From the warm winds of Myrtle Beach,
Tina
I am sitting on our balcony, listening to the waves as they race towards the shore and admiring the pink and purple hue of the clouds. The sea birds are shrilly calling, looking for food and the lights just came on to illuminate the pier next to our resort.
I still don't have much of an appetite and I have a touch of the cold Michael's had for over a week, but those are minor inconveniences. The wonderful thing is I can expect to feel stronger and better with each passing day, so I will be able to enjoy this long weekend away. (I was so anxious about this vacation and my ability to participate in it that I was in tears earlier this week.)
We're taking each day as it comes and probably won't do anything strenuous - a little shopping, lounging on the beach and by the pool, reading, dining on local delicacies, people watching, etc. We may even take a drive and see a little more of the area. Who knows. It's a casual type of vacation, which is what makes it so great.
From the warm winds of Myrtle Beach,
Tina
Thursday, May 3, 2012
A little less mental
Mentally, I think I've recovered as much as I will - or at least until the anti-depressants reveal their full power and the chemo completely clears from my system. Physically, I'm still a bit shaky, weak and tired. Perhaps my blood counts are low. Regardless, it makes me slower and less able than I'd like to be. Especially since I'm going on a trip tomorrow.
I'm a little (okay very) anxious about my compromised state and travelling. But I'm sure my sister will be there to help me get to where I need to be and get me a ride on one of those airport carts, if necessary. She assures me we can take it slow. I can rest a lot and naps won't be a problem because she's got lots of things she can do while I rest (she's got some work to do too).
I say my mental state seems to be recovered as much as it can because I've noticed it's been less than stellar since I started the taxol treatment. Usually I have a quick mind and good memory. I don't have the same ability to concentrate as I did. It makes conversations, reading, doing chores, engaging with others a bit more challenging and I seem to drift. It doesn't help my family either, especially when working with my kids on their homework or having conversations with Michael. It's also somewhat boring to my poor mind because it's not engaged. But then my mind chooses not to be engaging. Does that even make sense? In my poor befuddled brain, it does.
But I am what I am right now and this is who's headed to Myrtle Beach tomorrow. I have no big expectations and I'll do what I'm able. Luckily, I also have a very understanding sister who appreciates I'm in the middle of a pretty big fight and it's taking its toll. So we'll do what we can and enjoy the feeling of sand between our toes as we soak up a little bit of South Carolina sunshine.
Tina
I'm a little (okay very) anxious about my compromised state and travelling. But I'm sure my sister will be there to help me get to where I need to be and get me a ride on one of those airport carts, if necessary. She assures me we can take it slow. I can rest a lot and naps won't be a problem because she's got lots of things she can do while I rest (she's got some work to do too).
I say my mental state seems to be recovered as much as it can because I've noticed it's been less than stellar since I started the taxol treatment. Usually I have a quick mind and good memory. I don't have the same ability to concentrate as I did. It makes conversations, reading, doing chores, engaging with others a bit more challenging and I seem to drift. It doesn't help my family either, especially when working with my kids on their homework or having conversations with Michael. It's also somewhat boring to my poor mind because it's not engaged. But then my mind chooses not to be engaging. Does that even make sense? In my poor befuddled brain, it does.
But I am what I am right now and this is who's headed to Myrtle Beach tomorrow. I have no big expectations and I'll do what I'm able. Luckily, I also have a very understanding sister who appreciates I'm in the middle of a pretty big fight and it's taking its toll. So we'll do what we can and enjoy the feeling of sand between our toes as we soak up a little bit of South Carolina sunshine.
Tina
Tuesday, May 1, 2012
Perpetually melancholy
When I think about my blogs over the past few weeks, I realize they're actually rather depressing. As a result, I wonder why people are still even reading.
I don't feel well, I have the seemingly constant post-chemo depression and I am certainly not uplifting and cheery. I don't have any insights or lessons to share except to say, enjoy your life today because it could be worse. What a bundle of sunshine and roses I am.
When I'm in this post-chemo depression, it's hard to remember the good feelings. I'm hoping when the anti-depressants kick in, they'll help me from sinking so low. I hate feeling like this. I hate sharing this side of me with you. I hate subjecting my family to this. I hate it all so much.
But it's what I must do to fight this cancer. I have no choice.
Your continually melancholy friend,
Tina
I don't feel well, I have the seemingly constant post-chemo depression and I am certainly not uplifting and cheery. I don't have any insights or lessons to share except to say, enjoy your life today because it could be worse. What a bundle of sunshine and roses I am.
When I'm in this post-chemo depression, it's hard to remember the good feelings. I'm hoping when the anti-depressants kick in, they'll help me from sinking so low. I hate feeling like this. I hate sharing this side of me with you. I hate subjecting my family to this. I hate it all so much.
But it's what I must do to fight this cancer. I have no choice.
Your continually melancholy friend,
Tina
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