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
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