It feels weird when I don't blog for a few days, but over the last couple, I haven't felt like I've had anything significant to share. Even today, I don't feel I'm going to enlighten, educate or even entertain anyone with my words.
Today, I'm going to talk about this slight paranoia I've acquired over the last week or so. It's not a new phenomenon, because I think everyone who's been diagnosed with cancer develops a slight paranoia that every new ache, pain, twitch or bump is related to the cancer - and going to make the his or her health situation worse.
When I visited with Dr. W last week, I told him about this twitchy/sticky occurence that's happening with my right eye. Every once in a while - and especially when I'm tired - my right eye will freeze in a half-way position for a few seconds. Other times, it will twitch uncontrollably. I've experienced the twitching before when I've felt stressed. Friends at work would know when I was fretting about deadlines or projects when my eye would start to do its little uncontrollable dance. But this is different. And the sticking business is a new phenomenon entirely.
So why worry? Well, when I discussed it with Dr. W, he casually mentioned brain mets. Metastasis is the spread of disease from one area of the body to another. Say what? He's randomly throwing into conversation the possibility the cancer may have spread to my brain and is affecting my eye? Then he backtracked and added the culprit for my eye dilemma is probably the steroids I'm continually on (and trying to cut back on because we're concerned about side effects). But he jumped to brain mets!
Angie tried to allay my fears, saying the disease hasn't metastasized to any other organs and it's unlikely it would take a direct route to the brain; but the doc planted the seed about this horrible possibility in my head.
So when Michael noticed I had a funny bump on my forehead over the weekend, my first thought jumped to brain cancer pushing its way out of my head. When I woke with a horrible headache this morning, that started at my right shoulder blade, spread up to the bump area and behind my right eye, I thought brain mets.
I probably slept all curled up in a twisted position, I could be dehydrated, I may have always had that stupid bump on my forehead, but because I have cancer, it's not getting better and the doc made a mets comment, I'm now paranoid, thinking the worst.
I'm tired of worrying about the cancer in my abdomen that's squeezing my stomach, let alone even entertaining the thought it taking over my grey matter. I, and my doctors, need to keep our energy focused on getting the nasty tumours in my belly to shrink and go away. To do this, I'm going to have to try to squelch the paranoia the cancer is now frolicking into other areas of my body to create problems. Until I have confirmation from a CT scan or some medical test, I need to believe everything outside my abdomen is all fine and good so I can concentrate on moving on to the next phase of treatment. That's going to require all my energy.
Since I'm going to ask to switch treatment, I need to mentally prepare for the reprecussions of the new regimine. I'll most likely get Paclitaxel, which creates the nastier side effects and more depressing days. I also have to come to terms with the fact I'll effectively be starting over at square one as far as beating back this cancer is concerned. The Cisplatin/Gemcitabine combination has only stabilized the disease.
I know it's going to be a long, tough road ahead of me. But I'm digging in my heels and I'll do whatever I can to mentally and physically prepare for this new battle plan. And I'll try to squelch the paranoia that creeps up every once in a while.
By the way, the hot tub, a couple Tylenol and some Gatorade mostly alleviated the wicked headache, so perhaps we don't need to worry about cancer oozing out of my brain for today.
Tina
Wednesday, February 29, 2012
Sunday, February 26, 2012
Day two post chemo 5B
Just a quick update to say I'm doing okay. I had some unexpected nausea yesterday afternoon, a rarity for me day one post-chemo, which I rested through and got better after I took the strong anti-nausea meds yesterday evening.
I'm glad the drugs worked because I went to a social gathering last night where I got to see lots of friends in one place. Every year a group of friends try to get together a couple times a year to celebrate birthdays, which in this bunch seem to happen in winter or summer. So we gather for Birthdaypalooza - Winter Edition and Birthdaypalooza - Summer Edition.
It was so good these friends and have brief catch-up conversations with each of them. Although I have to admit, they all looked so good because they were going out dancing afterwards - something I'm not quite up to doing quite yet - and I appeared in my yoga pants, running top and with my steroid-inflated face. But they're my friends, so they understand my situation and were just happy to see me. I realized after the visit, I miss more consistent social interactions. Unfortunately, I can only plan and schedule what I'm up for with my side effects and everyone's busy schedules.
But I'm excited I have another friend coming this afternoon for coffee and to help this technology-challenged person set up her iPad. I look forward to the visit.
So in short, I still feel pretty good. I expect to head down the road to yuckiness tomorrow for a couple of days and then slide back up the other side later in the week.
Here's to enjoying the good feelings while they last.
Tina
I'm glad the drugs worked because I went to a social gathering last night where I got to see lots of friends in one place. Every year a group of friends try to get together a couple times a year to celebrate birthdays, which in this bunch seem to happen in winter or summer. So we gather for Birthdaypalooza - Winter Edition and Birthdaypalooza - Summer Edition.
It was so good these friends and have brief catch-up conversations with each of them. Although I have to admit, they all looked so good because they were going out dancing afterwards - something I'm not quite up to doing quite yet - and I appeared in my yoga pants, running top and with my steroid-inflated face. But they're my friends, so they understand my situation and were just happy to see me. I realized after the visit, I miss more consistent social interactions. Unfortunately, I can only plan and schedule what I'm up for with my side effects and everyone's busy schedules.
But I'm excited I have another friend coming this afternoon for coffee and to help this technology-challenged person set up her iPad. I look forward to the visit.
So in short, I still feel pretty good. I expect to head down the road to yuckiness tomorrow for a couple of days and then slide back up the other side later in the week.
Here's to enjoying the good feelings while they last.
Tina
Friday, February 24, 2012
Chemo day
I head to the chemo suite this morning for treatment 5B feeling very frustrated, when I should be excited. Okay, maybe excited is a bit strong, but at least happy. After today, I'll be done five of the six rounds of the toxic juice, with theoretically only treatments 6A and B left. But I know that's won't be the case. I'm not done. My cancer is only stabilized now, not beating a hasty and rapidly shrinking retreat - and that's not good enough.
I feel only a little better and I can currently feel the ascities rounding out my belly again. I'm still throwing up and feel unwell from the cancer, not just from the side-effects of the treatment. While I'll ask if my CA-125 has dropped, I suspect it is still hovering around the 200 mark.
By this point, I should be dancing with joy at how well I feel between treatments, and bounding into the cancer clinic confident in the knowledge the chemo is going to knock out the last of those pesky bits of tumours.
But I make my way to the chemo suite knowing the harsh chemicals they'll pump into me today will only continue to try to hold my disease steady. I'm angry the tumours still have the size and energy to create ascities and wreak havoc in my body after almost five treatments!
At my next appointment, I'm going to ask about switching the way we're tackling this scourge. I think Dr. W will suggest weekly treatments of Paclitaxel next (because he's already mentioned that option). I'll ask why we aren't going to go back to the Carboplatin and Paclitaxel regime, but I suspect it's because I've already been on Carboplatin/Cisplatin for five rounds for this treatment and it wouldn't be good for my body to continue using that drug for too long.
I have no idea how many weekly treatments of the Taxol is typical. I have no clue how long the infusions take. I guess I'll learn.
But today, the chemo nurses will see my smiling (yet puffy) face and I'll hold out my arm (with its handy PICC line) for its dose of toxic cocktail. I will cheer on the ninjas it contains and hope like hell it works against the dark monsters. And I'll continue to pray this cancer shrinks and goes away.
Wish me luck,
Tina
I feel only a little better and I can currently feel the ascities rounding out my belly again. I'm still throwing up and feel unwell from the cancer, not just from the side-effects of the treatment. While I'll ask if my CA-125 has dropped, I suspect it is still hovering around the 200 mark.
By this point, I should be dancing with joy at how well I feel between treatments, and bounding into the cancer clinic confident in the knowledge the chemo is going to knock out the last of those pesky bits of tumours.
But I make my way to the chemo suite knowing the harsh chemicals they'll pump into me today will only continue to try to hold my disease steady. I'm angry the tumours still have the size and energy to create ascities and wreak havoc in my body after almost five treatments!
At my next appointment, I'm going to ask about switching the way we're tackling this scourge. I think Dr. W will suggest weekly treatments of Paclitaxel next (because he's already mentioned that option). I'll ask why we aren't going to go back to the Carboplatin and Paclitaxel regime, but I suspect it's because I've already been on Carboplatin/Cisplatin for five rounds for this treatment and it wouldn't be good for my body to continue using that drug for too long.
I have no idea how many weekly treatments of the Taxol is typical. I have no clue how long the infusions take. I guess I'll learn.
But today, the chemo nurses will see my smiling (yet puffy) face and I'll hold out my arm (with its handy PICC line) for its dose of toxic cocktail. I will cheer on the ninjas it contains and hope like hell it works against the dark monsters. And I'll continue to pray this cancer shrinks and goes away.
Wish me luck,
Tina
Wednesday, February 22, 2012
Lather up
A couple of weeks ago, I received some scented soap as a gift. They came packaged in a beautiful gold and teal padded box, with a thick, gold cloth string decoration. Nestled inside lay four hand-made bars of soap with the tantalizing aromas of mint, lemongrass, tea tree and jasmine.
In the past, after exclaiming delight over the gift, I would have placed the box in my closet, waiting for a special reason to use such unique soaps. It may have sat there for months or years, waiting for a good reason for me to break open such a beautiful item.
Not anymore.
I'm currently using the mint soap, with its rich later and invigorating scent, in my shower every morning. When it's simply a sliver, I'll move onto the next one that captures my olafactory fancy.
Life is too short. My experience with cancer teaches me I don't need to save the good dishes, special shirt, tasty treat or fancy soaps for a better day. Today is a good day because I'm alive.
Sure, it's fun to save things for events, and I'm not saying don't make certain occasions special, but don't put off enjoying something indefinitely waiting for the "right" time. Those soaps, sitting in the back of my closet, may have never seen water if I waited for the perfect time to use them. Now I'm getting a small dose of pleasure every, ordinary day.
We're all special and need to celebrate that absolute fact by incorporating the little pleasures and luxuries into our everyday. We deserve it - because we are alive.
Tina
In the past, after exclaiming delight over the gift, I would have placed the box in my closet, waiting for a special reason to use such unique soaps. It may have sat there for months or years, waiting for a good reason for me to break open such a beautiful item.
Not anymore.
I'm currently using the mint soap, with its rich later and invigorating scent, in my shower every morning. When it's simply a sliver, I'll move onto the next one that captures my olafactory fancy.
Life is too short. My experience with cancer teaches me I don't need to save the good dishes, special shirt, tasty treat or fancy soaps for a better day. Today is a good day because I'm alive.
Sure, it's fun to save things for events, and I'm not saying don't make certain occasions special, but don't put off enjoying something indefinitely waiting for the "right" time. Those soaps, sitting in the back of my closet, may have never seen water if I waited for the perfect time to use them. Now I'm getting a small dose of pleasure every, ordinary day.
We're all special and need to celebrate that absolute fact by incorporating the little pleasures and luxuries into our everyday. We deserve it - because we are alive.
Tina
Tuesday, February 21, 2012
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."
- Mary Stevenson
The Queen of Chutneys commented today's blog reminded her of the poem Footprints in the Sand. That's an apt descriptor of how I feel. And I'm blessed to believe that God is carrying me and helping me through this difficult time. I just hope one day soon, I'll be able to dig my toes into the warm, wet sand and leave some footprints of my own.
Another incident happened this afternoon that makes me feel like I need to be carried by the Lord and all my friends. In addition to how I felt when I wrote my blog, I had a negative experience at the hospital. I had an appointment for my annual MRI to ensure my breasts are healthy. Unfortunately, I felt ill part way through the test and asked them to stop. But I didn't know stopping the scan would make it invalid and I'd have to come back another day.
When I found out, I wanted to cry. I wish I would have sucked up the nausea (and swallowed all the excess spit and whatever else made an appearance) so the test would just be done. But now I have to go back and remain perfectly still on my breastbone for 25 minutes again within the next few weeks. I'm so disheartened. It makes me want to go to bed right now and start again tomorrow.
Tina
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."
- Mary Stevenson
The Queen of Chutneys commented today's blog reminded her of the poem Footprints in the Sand. That's an apt descriptor of how I feel. And I'm blessed to believe that God is carrying me and helping me through this difficult time. I just hope one day soon, I'll be able to dig my toes into the warm, wet sand and leave some footprints of my own.
Another incident happened this afternoon that makes me feel like I need to be carried by the Lord and all my friends. In addition to how I felt when I wrote my blog, I had a negative experience at the hospital. I had an appointment for my annual MRI to ensure my breasts are healthy. Unfortunately, I felt ill part way through the test and asked them to stop. But I didn't know stopping the scan would make it invalid and I'd have to come back another day.
When I found out, I wanted to cry. I wish I would have sucked up the nausea (and swallowed all the excess spit and whatever else made an appearance) so the test would just be done. But now I have to go back and remain perfectly still on my breastbone for 25 minutes again within the next few weeks. I'm so disheartened. It makes me want to go to bed right now and start again tomorrow.
Tina
Admit
According to the dictionary, the definition of admit is to acknowledge as valid or true, often unwillingly or hesitantly.
Last week, I admitted verbally - perhaps for the first time to someone outside my immediate circle - that I am sick. I actually used those words, "I am sick."
I think I've only really accepted it mentally myself recently. Oh, I've known, and the thought has lurked in the back of my mind, but to actually say and believe the words is entirely different.
I was talking with my social worker about the difference between the current fight with cancer, admitting this time I feel sick. That's such a big shift from the first two times because I would always say, "I have cancer" or "I've been diagnosed with cancer" or "I'm currently fighting cancer." I never said I was sick.
Even when I was suffering after the chemo, I'd say I was experiencing side effects. It was all related to the drugs. The awfulness was mostly from the chemicals - and they were working to take away the discomfort of the ascities and rapidly shrinking the tumours in my belly. The side effects were because the drugs were working and because I was getting better so it was far easier to tolerate them.
I still felt strong. I bounced back quickly from the surgery. I responded well to the chemotherapy with the dark days only throwing minor shadows over the many good days. I knew what needed to be done so I could get back to work, working out, getting out and being Tina. And that's exactly what I did. Now I feel I may never be able to return to that state again. I feel I may NOT bounce back, get strong and do all those engaging things that made up my life.
I don't know exactly the timing of this shift in attitude. It must have been gradual or I may have been in denial for quite some time. I know while I was participating in the Olaparib and the Regorafinib clinical trials I didn't consider myself sick. Even though I was experiencing some debilitating side effects and had to have a drainage tube put in my abdomen (that had me feeling pretty crappy), I think because I was using a new and novel drug that could have been a treatment breakthrough, I thought of myself more as a guinea pig; someone working with the doctors to improve ovarian cancer care. I wasn't a "normal" ovarian cancer patient receiving a standard care. I could also blame some of the side effects on the clinical trial drugs instead of believing it's the cancer having its way with my body.
The fact it's taking so long for this standard care to even touch the cancer probably is a big factor in my sickness admission. I'm disillusioned that after 4-1/2 rounds of chemo, I still have ascities, my CA-125 is still at 211 and I don't feel well.
I feel the cancer is so much stronger and that it's continuing to try to take over. It feels like a bunch of big, dark monsters, skulking in the fluid and shadows, hiding from the ninjas and cackling with glee at how much power they have. Those skillful ninjas are doing their best and keep relentlessly tackling the dark creatures, but they tire from their complicated martial arts, get beaten back or lose track of the monsters before the new reinforcements are sent in.
This feeling makes me wonder if I'll actually get to a state where there's only microscopic disease or no evidence of disease (NED) so I can engage in some of the more normal aspects of my life. Admitting I'm sick makes me wonder if I'll get better.
All this contemplation and admission makes me feel weak and sad. It also makes me wonder about all the activities I may never be able to do or do again. During my last two rounds of fighting cancer, I wholeheartedly believed I was going to go whitewater rafting when I recovered. It didn't happen for a variety of reasons last summer, but now I wonder if I'll ever be able to do that desired activity. I wonder if I'll ever be able to sky dive again. Will I ever be physically fit and working out again? So many, "Will I ever . . . " statements flit through my mind.
As a result, I'm wondering if I have to revise my expectations so their more realistic. Or am I now setting my expectations too low? Am I giving up in areas where it isn't necessary (or not yet)? Do I need to be more patient to give treatment(s) a time to work?
I know I have a semi-defeatist attitutude today. Or then again, is it a realistic one? It's so hard to see clearly on either side of that blurry line sometimes. And of course, it depends on the day. Maybe I shouldn't be writing this type of blog on day four post chemo when I'm physically and emotionally wrecked. But it's how I feel today, so it's what I share.
Unfortunately, on days like these it's so easy for me to slip into the mindset of what life could be like if the cancer continues to take hold. I tell Michael we need to live positively and make the most of each day, but some days that's so hard to do.
But don't worry. Even though I admit to being sick, I do not conceed to the sickness. I have not given up on the fight nor gone down for the count. As I always say, I have too many wonderful things in my life. So I close with very appropriate quote, that I've used before:
"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
- Mary Anne Radmacher
Tina
Last week, I admitted verbally - perhaps for the first time to someone outside my immediate circle - that I am sick. I actually used those words, "I am sick."
I think I've only really accepted it mentally myself recently. Oh, I've known, and the thought has lurked in the back of my mind, but to actually say and believe the words is entirely different.
I was talking with my social worker about the difference between the current fight with cancer, admitting this time I feel sick. That's such a big shift from the first two times because I would always say, "I have cancer" or "I've been diagnosed with cancer" or "I'm currently fighting cancer." I never said I was sick.
Even when I was suffering after the chemo, I'd say I was experiencing side effects. It was all related to the drugs. The awfulness was mostly from the chemicals - and they were working to take away the discomfort of the ascities and rapidly shrinking the tumours in my belly. The side effects were because the drugs were working and because I was getting better so it was far easier to tolerate them.
I still felt strong. I bounced back quickly from the surgery. I responded well to the chemotherapy with the dark days only throwing minor shadows over the many good days. I knew what needed to be done so I could get back to work, working out, getting out and being Tina. And that's exactly what I did. Now I feel I may never be able to return to that state again. I feel I may NOT bounce back, get strong and do all those engaging things that made up my life.
I don't know exactly the timing of this shift in attitude. It must have been gradual or I may have been in denial for quite some time. I know while I was participating in the Olaparib and the Regorafinib clinical trials I didn't consider myself sick. Even though I was experiencing some debilitating side effects and had to have a drainage tube put in my abdomen (that had me feeling pretty crappy), I think because I was using a new and novel drug that could have been a treatment breakthrough, I thought of myself more as a guinea pig; someone working with the doctors to improve ovarian cancer care. I wasn't a "normal" ovarian cancer patient receiving a standard care. I could also blame some of the side effects on the clinical trial drugs instead of believing it's the cancer having its way with my body.
The fact it's taking so long for this standard care to even touch the cancer probably is a big factor in my sickness admission. I'm disillusioned that after 4-1/2 rounds of chemo, I still have ascities, my CA-125 is still at 211 and I don't feel well.
I feel the cancer is so much stronger and that it's continuing to try to take over. It feels like a bunch of big, dark monsters, skulking in the fluid and shadows, hiding from the ninjas and cackling with glee at how much power they have. Those skillful ninjas are doing their best and keep relentlessly tackling the dark creatures, but they tire from their complicated martial arts, get beaten back or lose track of the monsters before the new reinforcements are sent in.
This feeling makes me wonder if I'll actually get to a state where there's only microscopic disease or no evidence of disease (NED) so I can engage in some of the more normal aspects of my life. Admitting I'm sick makes me wonder if I'll get better.
All this contemplation and admission makes me feel weak and sad. It also makes me wonder about all the activities I may never be able to do or do again. During my last two rounds of fighting cancer, I wholeheartedly believed I was going to go whitewater rafting when I recovered. It didn't happen for a variety of reasons last summer, but now I wonder if I'll ever be able to do that desired activity. I wonder if I'll ever be able to sky dive again. Will I ever be physically fit and working out again? So many, "Will I ever . . . " statements flit through my mind.
As a result, I'm wondering if I have to revise my expectations so their more realistic. Or am I now setting my expectations too low? Am I giving up in areas where it isn't necessary (or not yet)? Do I need to be more patient to give treatment(s) a time to work?
I know I have a semi-defeatist attitutude today. Or then again, is it a realistic one? It's so hard to see clearly on either side of that blurry line sometimes. And of course, it depends on the day. Maybe I shouldn't be writing this type of blog on day four post chemo when I'm physically and emotionally wrecked. But it's how I feel today, so it's what I share.
Unfortunately, on days like these it's so easy for me to slip into the mindset of what life could be like if the cancer continues to take hold. I tell Michael we need to live positively and make the most of each day, but some days that's so hard to do.
But don't worry. Even though I admit to being sick, I do not conceed to the sickness. I have not given up on the fight nor gone down for the count. As I always say, I have too many wonderful things in my life. So I close with very appropriate quote, that I've used before:
"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
- Mary Anne Radmacher
Tina
Sunday, February 19, 2012
Tired and antsy
I'm sad because I feel tired, even after a decent eight hours of sleep. I know it's the chemo and my low hemoglobin talking. I'm well aware the restorative oxygen supplies of the new blood haven't had a chance to infiltrate my system. While at the same time, the knock-me-down effects of the chemotherapy are kicking in as the energy of the ninjas go to attacking those nasty cancer cells. I'm in a unique situation, and I'm tired. But I'm also tired of being tired.
I feel restless and anxious, eager to do something. But whenever I think of an activity, it seems like so much work; to take too much energy to actually pursue. Even going in the hot tub, which I love while I'm there, seems like such an ordeal. I need to get undressed, put on my bathing suit, squeeze my arm into the PICC line cover, make my way outdoors and slide into the hot water. (At which point, I'll luxuriously enjoy half and hour to 45 minutes of the therapeutic bubbles.) Then get out, dry off, take everything off, shower and go through the face and hair routine. It seems like so much work. Sad, eh? That's just part of a day for a normal person.
This Sunday stretches before me, full of hours to fill and I'm a bump on a log. I've been up since 5 a.m., I've read my book and chatted with my sister on my Blackberry. I've taken my handful of pills, sipped on some hot coffee and enjoyed a bowl of oatmeal. So I am finding pleasurable actvities to fill the time, but I don't feel useful.
I do have a London Knights' game to look forward to watching this afternoon and I think we'll have a family movie night. And besides tired, I feel pretty good - which is a blessing - so I should be happier.
I'm finding a restless feeling coming and going a lot these days. I get super antsy and restless. I want to hop in my car and drive somewhere, anywhere. The idea of a road trip is incredibly appealing. If only I could pack a bag and point my car south to head to Florida, Myrtle Beach, Tennessee, anywhere. I wish I could take advantage of one of those cheap all-inclusive trips down south and just escape for a week.
I know it's because I want to be anywhere here but fighting cancer. I can't escape it. I have to be here for all my treatments. I can't wander far from home in case some complication arises. I go to treatment, I come home to recover. It feels like a never-ending cycle, and one I think it going to take longer than originally anticipated. Michael and I plan to take a trip when I'm well enough, but that magical timeframe seems to be getting further and further away. So the feeling of wishing I could escape can, even for just a week, grows stronger and stronger.
In the meantime, Michael and I have planned a night away in Niagara Falls in a few weeks. It's close to home and has hospitals available if something goes wrong (which it won't, of course) but it's also a little diversionary escape because it's not home. I'll have to make due with that in the meantime - and perhaps plan a few more like that to quench my escapist feelings and save my sanity.
In the meantime, I guess I can use some of the long hours during these tired days to flip through the travel brochures and sites to plan a bigger excursion for that day - which feels really far in the future - when I can venture a little farther from home.
Your tired, yet restless friend,
Tina
I feel restless and anxious, eager to do something. But whenever I think of an activity, it seems like so much work; to take too much energy to actually pursue. Even going in the hot tub, which I love while I'm there, seems like such an ordeal. I need to get undressed, put on my bathing suit, squeeze my arm into the PICC line cover, make my way outdoors and slide into the hot water. (At which point, I'll luxuriously enjoy half and hour to 45 minutes of the therapeutic bubbles.) Then get out, dry off, take everything off, shower and go through the face and hair routine. It seems like so much work. Sad, eh? That's just part of a day for a normal person.
This Sunday stretches before me, full of hours to fill and I'm a bump on a log. I've been up since 5 a.m., I've read my book and chatted with my sister on my Blackberry. I've taken my handful of pills, sipped on some hot coffee and enjoyed a bowl of oatmeal. So I am finding pleasurable actvities to fill the time, but I don't feel useful.
I do have a London Knights' game to look forward to watching this afternoon and I think we'll have a family movie night. And besides tired, I feel pretty good - which is a blessing - so I should be happier.
I'm finding a restless feeling coming and going a lot these days. I get super antsy and restless. I want to hop in my car and drive somewhere, anywhere. The idea of a road trip is incredibly appealing. If only I could pack a bag and point my car south to head to Florida, Myrtle Beach, Tennessee, anywhere. I wish I could take advantage of one of those cheap all-inclusive trips down south and just escape for a week.
I know it's because I want to be anywhere here but fighting cancer. I can't escape it. I have to be here for all my treatments. I can't wander far from home in case some complication arises. I go to treatment, I come home to recover. It feels like a never-ending cycle, and one I think it going to take longer than originally anticipated. Michael and I plan to take a trip when I'm well enough, but that magical timeframe seems to be getting further and further away. So the feeling of wishing I could escape can, even for just a week, grows stronger and stronger.
In the meantime, Michael and I have planned a night away in Niagara Falls in a few weeks. It's close to home and has hospitals available if something goes wrong (which it won't, of course) but it's also a little diversionary escape because it's not home. I'll have to make due with that in the meantime - and perhaps plan a few more like that to quench my escapist feelings and save my sanity.
In the meantime, I guess I can use some of the long hours during these tired days to flip through the travel brochures and sites to plan a bigger excursion for that day - which feels really far in the future - when I can venture a little farther from home.
Your tired, yet restless friend,
Tina
Thursday, February 16, 2012
Answers and a plan
Success: I saw Dr. W today, we talked about my CT scans, how I'm responding to treatment, what next steps could be and how we're proceeding now.
Most immediately, the plan for tomorrow is to give me both chemotherapy and a two pints of blood. My hemoglobin dropped again, to 82, which is getting in the "Danger, danger, Will Robinson zone." (Yes, I've dated myself.) While doing both will make for a very long day, I'm thrilled I don't have to get a transfusion tomorrow and then wait for the restorative effects of the transfusion to take effect, which would probably delay my chemo by a week.
We also talked about my CT scans and how I can't compare the results from my latest test to those very detailed ones I used to get in Hamilton. He said, I got such detailed scans because I was part of a clinical trial and the radiologists in London don't report them the same way. They tend to provide general recommendations on if the disease progression is better, the same or worse. So it will be impossible for me to put the scans side by side and compare apples to apples.
Besides, Dr. W explained the surgery, with its flushing of the infected ascities and invasiveness probably moved things around in there, so it would be impossible to measure the disease in the same way and do a direct comparison. Bottom line, the CT shows my tumours, after three rounds of chemotherapy, is the same or slightly worse than September. But I also have to remember, the tumours had six weeks to grow before I even started treatment, so it's not 100 per cent accurate either.
But the good news is, as of my blood results three weeks ago, my CA-125 was finally trending downward from 355 to 201. I will find out tomorrow if it's dropped again. As a result, Dr. W thinks I am (finally) responding to treatment. So the plan is to continue with the current chemo combination of Cisplatin and Gemcitabine, especially since I seem to be tolerating it so well. After the six rounds are complete (I'm on round 5A and B), I'll have another CT scan to see if more treatment (or another type) is needed to get me to having microscopic or no evidence of disease. That's the goal. Yes, then maybe I can go on vacation and have a life.
If my CA-125 is up or if I need a different form of treatment, he's recommending I get Paclitaxol chemotherapy weekly. I've had Taxol before. It's the one that produces some nasty side effects and makes all my hair fall out. But it may not be as toxic if I get it weekly and besides, I'll do whatever I need to get this cancer to die.
We're also cutting my Dexamethason in half because it's not good for me and because I'm experiencing this weird freezing/twitchy with my right eye. Hopefully, with the other drugs I'm on for my digestive issues and the low-residue diet, reducing the steroid won't affect my ability to enjoy and retain my food.
I'm happy to have some answers, and to have a plan for both tomorrow and for the longer term. Talking to Dr W today makes me feel like we're both working towards the same goal of giving me a life back. I know I have to be patient and continue to be somewhat flexible, but that's the story of my life.
So think of Angie and I tomorrow as we spend a very long day in the chemo suite. We'll have to pack snacks and engaging activities because we'll start the whole process just before 9 a.m. and be done about eight hours later. But we're deploying more ninjas to kill the cancer and moving forward. Yay!
Tina
Most immediately, the plan for tomorrow is to give me both chemotherapy and a two pints of blood. My hemoglobin dropped again, to 82, which is getting in the "Danger, danger, Will Robinson zone." (Yes, I've dated myself.) While doing both will make for a very long day, I'm thrilled I don't have to get a transfusion tomorrow and then wait for the restorative effects of the transfusion to take effect, which would probably delay my chemo by a week.
We also talked about my CT scans and how I can't compare the results from my latest test to those very detailed ones I used to get in Hamilton. He said, I got such detailed scans because I was part of a clinical trial and the radiologists in London don't report them the same way. They tend to provide general recommendations on if the disease progression is better, the same or worse. So it will be impossible for me to put the scans side by side and compare apples to apples.
Besides, Dr. W explained the surgery, with its flushing of the infected ascities and invasiveness probably moved things around in there, so it would be impossible to measure the disease in the same way and do a direct comparison. Bottom line, the CT shows my tumours, after three rounds of chemotherapy, is the same or slightly worse than September. But I also have to remember, the tumours had six weeks to grow before I even started treatment, so it's not 100 per cent accurate either.
But the good news is, as of my blood results three weeks ago, my CA-125 was finally trending downward from 355 to 201. I will find out tomorrow if it's dropped again. As a result, Dr. W thinks I am (finally) responding to treatment. So the plan is to continue with the current chemo combination of Cisplatin and Gemcitabine, especially since I seem to be tolerating it so well. After the six rounds are complete (I'm on round 5A and B), I'll have another CT scan to see if more treatment (or another type) is needed to get me to having microscopic or no evidence of disease. That's the goal. Yes, then maybe I can go on vacation and have a life.
If my CA-125 is up or if I need a different form of treatment, he's recommending I get Paclitaxol chemotherapy weekly. I've had Taxol before. It's the one that produces some nasty side effects and makes all my hair fall out. But it may not be as toxic if I get it weekly and besides, I'll do whatever I need to get this cancer to die.
We're also cutting my Dexamethason in half because it's not good for me and because I'm experiencing this weird freezing/twitchy with my right eye. Hopefully, with the other drugs I'm on for my digestive issues and the low-residue diet, reducing the steroid won't affect my ability to enjoy and retain my food.
I'm happy to have some answers, and to have a plan for both tomorrow and for the longer term. Talking to Dr W today makes me feel like we're both working towards the same goal of giving me a life back. I know I have to be patient and continue to be somewhat flexible, but that's the story of my life.
So think of Angie and I tomorrow as we spend a very long day in the chemo suite. We'll have to pack snacks and engaging activities because we'll start the whole process just before 9 a.m. and be done about eight hours later. But we're deploying more ninjas to kill the cancer and moving forward. Yay!
Tina
Blood and stuff
It's amazing how big a difference a couple of days can make. Monday night I went to bed feeling absolutely awful. I seriously told myself if I felt the same way in the morning, I was going to try to get into the cancer clinic to get my blood levels checked and verify I was hydrated enough. I went to bed, wishing for the blessed oblivion of sleep.
Tuesday morning I awoke feeling better; not quite so desperate for a medical professional to tell me all was okay. I still didn't drink coffee that morning (which is a sure sign I'm not up to snuff), but I was well enough to get out of the house for a lunch date with my parents and a Reiki appointment, which in itself made me feel better. My homecare nurse said I looked good and my blood pressure was fine.
Yesterday and today, I feel so good I'm confident my blood levels will be high enough for my treatment tomorrow. (I hope I'm not wrong and being overly optimistic.) I've got energy and I'm ready to forge ahead with the fight. I'm almost stunned at the difference in me in three short days. The body is an amazing organism.
Along with my blood draw, today is my appointment with my doc. I hope I get to see Dr. W. The last three visits, I saw a member of the team who works with him. But I'm hoping to talk to him personally today.
I'm going to bring along the last three CT scans I have from Hamilton. They were comprehensive reports with the locations and sizes of the tumours in my abdomen. I'm going to ask if a another read (or maybe there is a better report as the one I have says preliminary) be done on my latest CT scan so a true comparison can be done on how I'm doing. I'd like compare apples to apples, as the saying goes.
I'm also hope to ask Dr. W's opinion on the next steps if the cancer hasn't gone into remission after the six scheduled treatments are done. I need a plan. We may not come up with any answers today, but at least we can get the discussion going and I can have some idea where my life may be headed.
As I drink my coffee and scarf back my breakfast, I'm feeling a little action-oriented. Let's get going on round four. Let's understand better where I currently stand. Let's get some back-up plan at least in the kitchen (if not on the back burner).
Tina
Tuesday morning I awoke feeling better; not quite so desperate for a medical professional to tell me all was okay. I still didn't drink coffee that morning (which is a sure sign I'm not up to snuff), but I was well enough to get out of the house for a lunch date with my parents and a Reiki appointment, which in itself made me feel better. My homecare nurse said I looked good and my blood pressure was fine.
Yesterday and today, I feel so good I'm confident my blood levels will be high enough for my treatment tomorrow. (I hope I'm not wrong and being overly optimistic.) I've got energy and I'm ready to forge ahead with the fight. I'm almost stunned at the difference in me in three short days. The body is an amazing organism.
Along with my blood draw, today is my appointment with my doc. I hope I get to see Dr. W. The last three visits, I saw a member of the team who works with him. But I'm hoping to talk to him personally today.
I'm going to bring along the last three CT scans I have from Hamilton. They were comprehensive reports with the locations and sizes of the tumours in my abdomen. I'm going to ask if a another read (or maybe there is a better report as the one I have says preliminary) be done on my latest CT scan so a true comparison can be done on how I'm doing. I'd like compare apples to apples, as the saying goes.
I'm also hope to ask Dr. W's opinion on the next steps if the cancer hasn't gone into remission after the six scheduled treatments are done. I need a plan. We may not come up with any answers today, but at least we can get the discussion going and I can have some idea where my life may be headed.
As I drink my coffee and scarf back my breakfast, I'm feeling a little action-oriented. Let's get going on round four. Let's understand better where I currently stand. Let's get some back-up plan at least in the kitchen (if not on the back burner).
Tina
Tuesday, February 14, 2012
A little bit mushy
According to the retail industry, today is the most important day of the year to show how much we love another. You're supposed to shower your significant other with flowers, chocolates, jewelery or at least a card to express your love. Today, some big, theoretical cherub pulls back on his bow and aims right for the tender hearts of romantic partners everywhere. Love is in the air.
I think Michael and I actually officially celebrated Valentine's Day once or twice during the early years of our relationship. But for one reason or another (a work committment, the restaurants were too full, we had a coupon that couldn't be used on Feb. 14), we decided to celebrate on the 15th instead. It worked out well. We got a great meal, discounted chocolates and a less crowded venue while accomplishing the same goal of celebrating our love for each other.
As we accumulated more years together - and I think this may be true of many couples who have been together a long time - the importance of this red and pink holiday dimmed in significance. Life's activities or events for the kids took precedence. It was far more important to get the 27 little valentine cards popped out and labelled for the class than it was to find the perfect card to say, "I love you" for my husband, who knew how I felt. I think we also realized we show our love for each other in the little ways we live together every day more than we do on some snowy event in February.
Although, I must admit, I think we also easily fall into the trap of taking each other for granted. That's why I want to use this blog to scratch the surface of how much Michael means to me; especially as we go through so many difficult days this year. He is my sunshine and my rain. He brings me joy and always provides a soft shoulder for crying or cuddling. He's always there for me and I love him with all my heart.
Yeah, a little mushy, but that's my perogative. My words are my valentine to my sweetheart. That and perhaps a sweet, little kiss when he gets home from work.
I hope you have a chance to celebrate love today and you get what you need or want from a special someone (which can include friends, kids, parents, neighbours, etc.). I know some of you will be presented with some beautiful blooms or decadant chocolate, while others may get something sparkly. Yeah for you! I was very happy for the big squeeze from my daughter this morning. Heck, some folks out there even get engaged today. (It's been known to happen.) But I've got everything I want and need because I have two wonderful children, and my husband and soul mate will be coming home to me.
Tina
I think Michael and I actually officially celebrated Valentine's Day once or twice during the early years of our relationship. But for one reason or another (a work committment, the restaurants were too full, we had a coupon that couldn't be used on Feb. 14), we decided to celebrate on the 15th instead. It worked out well. We got a great meal, discounted chocolates and a less crowded venue while accomplishing the same goal of celebrating our love for each other.
As we accumulated more years together - and I think this may be true of many couples who have been together a long time - the importance of this red and pink holiday dimmed in significance. Life's activities or events for the kids took precedence. It was far more important to get the 27 little valentine cards popped out and labelled for the class than it was to find the perfect card to say, "I love you" for my husband, who knew how I felt. I think we also realized we show our love for each other in the little ways we live together every day more than we do on some snowy event in February.
Although, I must admit, I think we also easily fall into the trap of taking each other for granted. That's why I want to use this blog to scratch the surface of how much Michael means to me; especially as we go through so many difficult days this year. He is my sunshine and my rain. He brings me joy and always provides a soft shoulder for crying or cuddling. He's always there for me and I love him with all my heart.
Yeah, a little mushy, but that's my perogative. My words are my valentine to my sweetheart. That and perhaps a sweet, little kiss when he gets home from work.
I hope you have a chance to celebrate love today and you get what you need or want from a special someone (which can include friends, kids, parents, neighbours, etc.). I know some of you will be presented with some beautiful blooms or decadant chocolate, while others may get something sparkly. Yeah for you! I was very happy for the big squeeze from my daughter this morning. Heck, some folks out there even get engaged today. (It's been known to happen.) But I've got everything I want and need because I have two wonderful children, and my husband and soul mate will be coming home to me.
Tina
Monday, February 13, 2012
Breathless
I'm a wee bit worried about whether I'll be able to get my chemo this week. I can feel I'm not recovering as quickly and I'm not as strong as I should be by this point in the cycle. Over the last couple of days, I've felt slightly unwell, tired, shaky and, well, off.
This morning, exertion left me breathless. Walking up and down the stairs had me panting. I had to sit on the toilet and rest after my shower (for goodness sake!) to recover. My breathing is quicker and a little more laboured today. I have a headache. I know it's all because my hemoglobin is low and my body isn't circulating oxygen very well. In other words, I don't have enough red blood cells.
If my hemoglobin is too low, I can't have chemo. Instead, and if my levels are too low, I'll need a blood transfusion. Last time I got one, I needed a few days for the blood to circulate and help me recover before I could proceed with my treatment. That delayed my treatment by a week. It'd be so disappointing to have to postpone again. I just want to get the next round of chemo in so I can keep kicking cancer's butt. So I desperately hope my levels aren't as bad as I think.
Then again, I don't want to jeopardize my health, so I will do what I have to do. If my levels are low and it's dangerous to get treatment, I will listen to the docs and follow their instructions.
Today, I rested, rested and rested some more. I lounged around in bed, reading, writing and dosing. My plans for the evening involve encouraging Michael and Tara to make dinner. I have appointments and events scheduled for this week - some of which are optional - that I will assess whether I attend each day. I don't have any control over how quickly my hemoglobin recovers. There's no magic food I can eat nor vitamin I can take. My body has to create more hemoglobin on its own over time (or I'll need to become a vampire again and get that transfusion). But I figure resting because I don't feel well certainly can't hurt.
Hopefully, my body will experience a sudden turn around and I'll bounce back one day this week. My appointment with Dr. W and blood tests are on Thursday, so I still have a few days to recover. Chemo is scheduled for Friday and my fingers (and toes, legs, eyes and everything else) are crossed I can proceed as scheduled.
Tina
This morning, exertion left me breathless. Walking up and down the stairs had me panting. I had to sit on the toilet and rest after my shower (for goodness sake!) to recover. My breathing is quicker and a little more laboured today. I have a headache. I know it's all because my hemoglobin is low and my body isn't circulating oxygen very well. In other words, I don't have enough red blood cells.
If my hemoglobin is too low, I can't have chemo. Instead, and if my levels are too low, I'll need a blood transfusion. Last time I got one, I needed a few days for the blood to circulate and help me recover before I could proceed with my treatment. That delayed my treatment by a week. It'd be so disappointing to have to postpone again. I just want to get the next round of chemo in so I can keep kicking cancer's butt. So I desperately hope my levels aren't as bad as I think.
Then again, I don't want to jeopardize my health, so I will do what I have to do. If my levels are low and it's dangerous to get treatment, I will listen to the docs and follow their instructions.
Today, I rested, rested and rested some more. I lounged around in bed, reading, writing and dosing. My plans for the evening involve encouraging Michael and Tara to make dinner. I have appointments and events scheduled for this week - some of which are optional - that I will assess whether I attend each day. I don't have any control over how quickly my hemoglobin recovers. There's no magic food I can eat nor vitamin I can take. My body has to create more hemoglobin on its own over time (or I'll need to become a vampire again and get that transfusion). But I figure resting because I don't feel well certainly can't hurt.
Hopefully, my body will experience a sudden turn around and I'll bounce back one day this week. My appointment with Dr. W and blood tests are on Thursday, so I still have a few days to recover. Chemo is scheduled for Friday and my fingers (and toes, legs, eyes and everything else) are crossed I can proceed as scheduled.
Tina
Saturday, February 11, 2012
Swine devine
As I've mentioned before, I spend very little time looking in the mirror these days because I don't like what's reflected back at me. While my no-eat-and-vomit diet has shrunk my waist and body, the Dexamethasone has my face swollen to puffy proportions. In the whole scheme of things, I know it's not a big deal and no one cares but me. Michael says I'm still beautiful, but he has to say that because he's married to me.
Just to give you some idea of the dramatic changes, I'm posting some photos (apologies they're not the best).
Here's me in June, when the CT showed the disease was back but before I started experiencing the physical symptoms of the cancer. I was dressed for work and ready to take on the day.
Here's me in the hospital, all skinny from not eating for 10 days. I look pretty happy despite it all. It must have been a good day.
And here's me with my fat face from the steroids. Don't I look impressed? What a big difference! And it's even more puffy now. That's my beautiful sister with me as we enjoyed a hockey game together.
As you can see, there's a big difference. It's amazing what steroid medication can do to a person. But if it makes me feel better, helps me eat and keeps the nausea at bay, I'll learn to live with my moon face.
Most of the time I eschew make up, but I decided to put some on when I went shopping with my sister the other day. A very appropriate saying came to mind - It's like putting lipstick on a pig. While that may sound harsh, that's what I felt like.
Beautiful!
Tina
Just to give you some idea of the dramatic changes, I'm posting some photos (apologies they're not the best).
Here's me in June, when the CT showed the disease was back but before I started experiencing the physical symptoms of the cancer. I was dressed for work and ready to take on the day.
Here's me in the hospital, all skinny from not eating for 10 days. I look pretty happy despite it all. It must have been a good day.
And here's me with my fat face from the steroids. Don't I look impressed? What a big difference! And it's even more puffy now. That's my beautiful sister with me as we enjoyed a hockey game together.
As you can see, there's a big difference. It's amazing what steroid medication can do to a person. But if it makes me feel better, helps me eat and keeps the nausea at bay, I'll learn to live with my moon face.
Most of the time I eschew make up, but I decided to put some on when I went shopping with my sister the other day. A very appropriate saying came to mind - It's like putting lipstick on a pig. While that may sound harsh, that's what I felt like.
Beautiful!
Tina
Friday, February 10, 2012
Ignoring good advice
You know when you give yourself advice and you know it's absolutely the right thing to do, and you do the exact opposite? That's what I did today. I have a feeling I'm going to pay for it, but I couldn't help myself. I couldn't stop.
Shortly after I woke up, I started to clean. First I reorganized a pantry because I had it in my head the Tupperware containers would look better on the new, open shelves in the kitchen. From there, I decided I needed to clean the house properly. We have friends coming for dinner tomorrow (and yes, I know they don't care about the status of my house, but I got it in MY head it must be spic and span). So I got out the dust rag and polish, the bathroom cleansers, window cleaners and rags, the stove-top and kitchen sink paraphenalia and I started to scrub.
Maybe it's because I haven't personally thoroughly cleaned my house in a while, but I acted like a woman possessed. I moved objects to eradicate the little specks of dust behind the decorative candles, I polished the bottom of the toilet until it sparkled, I went to town with the stainless steel cleaner until my kitchen sink shined, I removed the carousel and scrubbed the little bits of food adhering inside my microwave and I washed down the fronts of all my cupboards and appliances. I operated like I was subject to some military-grade inspection. I don't know what got into me.
To top it off, I decided it was necessary to do three loads of laundry while I was spitting, polishing and shining.
I knew I should stop when I got a nose bleed part way through the morning. But I couldn't. I seriously felt and still sort of do) like someone has taken over my body and I'm out of control. I don't feel like myself. It's the strangest thing.
By the time I was done (although I still have a load of laundry in the dryer), I was exhausted, shaky and slightly dizzy. I laid down, figuring I would fall into a deep nap, only to be stymied by my own brain. My body wouldn't shut down. I dosed for probably about 10 minutes.
Trust me, I know I should have been resting today. I understand I need to get my rest and build up my red blood cells and platelets. I gave myself that exact same great advice just yesterday. I told myself several times today to stop, that it could wait until tomorrow and that I didn't need to be so thorough. But I didn't listen and I let this other-world, psycho Tina take over.
The good news, I have a clean house (after Michael does his job of vacuuming and cleaning the floors tomorrow). I suspect the bad news is I'm going to crash pretty darn early tonight.
Tina
Shortly after I woke up, I started to clean. First I reorganized a pantry because I had it in my head the Tupperware containers would look better on the new, open shelves in the kitchen. From there, I decided I needed to clean the house properly. We have friends coming for dinner tomorrow (and yes, I know they don't care about the status of my house, but I got it in MY head it must be spic and span). So I got out the dust rag and polish, the bathroom cleansers, window cleaners and rags, the stove-top and kitchen sink paraphenalia and I started to scrub.
Maybe it's because I haven't personally thoroughly cleaned my house in a while, but I acted like a woman possessed. I moved objects to eradicate the little specks of dust behind the decorative candles, I polished the bottom of the toilet until it sparkled, I went to town with the stainless steel cleaner until my kitchen sink shined, I removed the carousel and scrubbed the little bits of food adhering inside my microwave and I washed down the fronts of all my cupboards and appliances. I operated like I was subject to some military-grade inspection. I don't know what got into me.
To top it off, I decided it was necessary to do three loads of laundry while I was spitting, polishing and shining.
I knew I should stop when I got a nose bleed part way through the morning. But I couldn't. I seriously felt and still sort of do) like someone has taken over my body and I'm out of control. I don't feel like myself. It's the strangest thing.
By the time I was done (although I still have a load of laundry in the dryer), I was exhausted, shaky and slightly dizzy. I laid down, figuring I would fall into a deep nap, only to be stymied by my own brain. My body wouldn't shut down. I dosed for probably about 10 minutes.
Trust me, I know I should have been resting today. I understand I need to get my rest and build up my red blood cells and platelets. I gave myself that exact same great advice just yesterday. I told myself several times today to stop, that it could wait until tomorrow and that I didn't need to be so thorough. But I didn't listen and I let this other-world, psycho Tina take over.
The good news, I have a clean house (after Michael does his job of vacuuming and cleaning the floors tomorrow). I suspect the bad news is I'm going to crash pretty darn early tonight.
Tina
Thursday, February 9, 2012
Good
It seems only fitting after a blog post I entitled bad, I should write one that says good. I started to feel much better yesterday. By evening, I was able to enjoy dinner with the family, go to my daughter's riding lesson (something I don't feel up to doing very often these days) and have a post-ride Timmy's cafe mocha. It was delicious. Coffee and me are good friends these days as I am having a hard time resisting a good cuppa java. It makes me feel good, so why not?
Today, I enjoyed the sunshine and got out of the house by going shopping with my sister. I found a few good deals and got a bunch of much-needed groceries. It's fun to spend the day with Angie and we were able to enjoy some tasty chicken pot pie and biscuits at lunch too.
I think I can say my stomach situation has finally started to improve. I only vomit every few days and it's usually when I do something silly like try to eat too much or consume a food that's heavier (for example, my delicious steak dinner I savoured - and then saw again - the other night). I'm not saying it's perfect because I still have lots of gas and have to be careful, but the situation is better. As a result, I'm happier.
I seem to be through the yucky, depressing side effects of the latest round of chemo too. I know I'll continue to tire easily because my red blood levels are probably dropping to their lowest right around now, but I can nap. That's far easier to deal with than the emotional and psychological triggers the chemo seems to bring on days three and four post treatment.
So I'll enjoy the sunshine today and celebrate the energy I do have. I'll plan lower-energy activities with my friends over the next week. I'll read my book and surf on my computer. I'll rest and do the best I can to make sure I'm physically prepared for the next round of chemo-killing juice next Friday.
Tina
Today, I enjoyed the sunshine and got out of the house by going shopping with my sister. I found a few good deals and got a bunch of much-needed groceries. It's fun to spend the day with Angie and we were able to enjoy some tasty chicken pot pie and biscuits at lunch too.
I think I can say my stomach situation has finally started to improve. I only vomit every few days and it's usually when I do something silly like try to eat too much or consume a food that's heavier (for example, my delicious steak dinner I savoured - and then saw again - the other night). I'm not saying it's perfect because I still have lots of gas and have to be careful, but the situation is better. As a result, I'm happier.
I seem to be through the yucky, depressing side effects of the latest round of chemo too. I know I'll continue to tire easily because my red blood levels are probably dropping to their lowest right around now, but I can nap. That's far easier to deal with than the emotional and psychological triggers the chemo seems to bring on days three and four post treatment.
So I'll enjoy the sunshine today and celebrate the energy I do have. I'll plan lower-energy activities with my friends over the next week. I'll read my book and surf on my computer. I'll rest and do the best I can to make sure I'm physically prepared for the next round of chemo-killing juice next Friday.
Tina
Wednesday, February 8, 2012
Bad
Yesterday, was a bad day.
I was:
After she left, I hopped in the hot tub and showered, transforming myself into someone who could be seen by the public. I summoned the energy to make dinner and read the newspaper. By the evening, I was capable of having coherent conversations with my family.
I'm not sure what today will bring, although I feel better right now than I did by this time yesterday morning. But I know from experience that can change rapidly as my energy wanes. I know I'm still on a chemo low, so I may still experience another emotion-filled, very low-key day - and that's okay. I refuse to feel guilty about it (see how much better I'm getting at taking care of me?).
As I told Noah this morning, it's his job to work hard and do well at school and it's my job to fight this cancer and try to get better. (His initial response to the question about my job right is to be a mom. Yeah, that too. But, rest assured, my son (and daughter), as long as I'm breathing, I'll continue to be your mom.)
Even if today is another lounging day, hopefully I'll start to climb out from the side effects. These days, while necessary, make me feel stuck in limbo. I want to continue back on the road to energy and well-being so I can be more engaged in life.
What will engage you today? Is it something fun? If not, could it be?
Tina
I was:
- Irritable - Good thing my family was at work and school.
- Sore - My stomach hurt most of the day.
- Tired - A weary, lethargic, heavy tiredness filled my body.
- Weepy - Oh, all the emotions swirling around in my head and heart.
- Withdrawn - It's better to be alone when I'm that way.
After she left, I hopped in the hot tub and showered, transforming myself into someone who could be seen by the public. I summoned the energy to make dinner and read the newspaper. By the evening, I was capable of having coherent conversations with my family.
I'm not sure what today will bring, although I feel better right now than I did by this time yesterday morning. But I know from experience that can change rapidly as my energy wanes. I know I'm still on a chemo low, so I may still experience another emotion-filled, very low-key day - and that's okay. I refuse to feel guilty about it (see how much better I'm getting at taking care of me?).
As I told Noah this morning, it's his job to work hard and do well at school and it's my job to fight this cancer and try to get better. (His initial response to the question about my job right is to be a mom. Yeah, that too. But, rest assured, my son (and daughter), as long as I'm breathing, I'll continue to be your mom.)
Even if today is another lounging day, hopefully I'll start to climb out from the side effects. These days, while necessary, make me feel stuck in limbo. I want to continue back on the road to energy and well-being so I can be more engaged in life.
What will engage you today? Is it something fun? If not, could it be?
Tina
Monday, February 6, 2012
Recovery week
While I woke up feeling really good today and have been super productive so far this morning - hot tub, shower, budget calculations, benefit paperwork, etc. - I can already feel the tiredness starting to settle on my shoulders and behind my eyes. It's only 9:30 a.m. and I'm already considering sliding under my heated blanket with a book. That's not a bad thing.
It is day three post chemo and so the side effects are due any time now. My hemoglobin was also low going into chemotherapy at 95 (normal is between 120 and 140), so I'm probably going to feel more tired, quicker.
I have very little planned for the first three days of this week, simply for that reason. I will go with the ebb and flow of my energy and do what I can. I'll give the ninjas and the chemo the energy stores they need to fight the tumours. It's the best thing I can do for my body and my recovery right now (and I'm actually doing what I'm supposed to do).
Tina
It is day three post chemo and so the side effects are due any time now. My hemoglobin was also low going into chemotherapy at 95 (normal is between 120 and 140), so I'm probably going to feel more tired, quicker.
I have very little planned for the first three days of this week, simply for that reason. I will go with the ebb and flow of my energy and do what I can. I'll give the ninjas and the chemo the energy stores they need to fight the tumours. It's the best thing I can do for my body and my recovery right now (and I'm actually doing what I'm supposed to do).
Tina
Sunday, February 5, 2012
Chemo 4B
If my treatment goes according to schedule - and that's a big IF - I am now two-thirds done my chemotherapy regime. I should be more excited. But I'm not holding my breath because I don't want to be disappointed if I have to have more chemo, or some addition type of treatment. I'm going to be cautiously optimistic and celebrate the little blessings I get along the way.
One was how well everything went on Friday. My blood levels were acceptable to actually get chemo. While my white blood cells were a little high (I've had a runny nose for the past week and may have a touch of a cold) and my red blood cells were a little low (the chemo is kicking them down), neither put a halt to treatment.
I got the bed in the private room, where Michael and I had a bit more privacy. The nurse also started the saline drip while the blood tests were running (instead of waiting until after) and that simple act shaved an hour off my time stuck to the IV pole. So I was out of there around 1 p.m. to do a little shopping and get on with my day.
I also want to celebrate yesterday. I felt great after chemo, had lots of energy and was able to eat decent meals. In fact, we took this good energy day as an opportunity to reorganize our kitchen. Michael got some shelving units from work, and we made them work in our house to create new and better organized kitchen space. No, they don't match our other cupboards (some of which have been "temporary" since we moved in 1999), but it's an improvement. And with limited funding, sometimes, you just become creative. I'm thrilled with the end result, and I'm happy I was able to put the steroid energy to good use before I start to crash.
I suspect I have one more decent day before the side effects kick in and I'm going to celebrate by having lunch with some friends. But, I have to admit, so far the side effects are generally tolerable. I get tired, bitchy, depressed, lethargic, antsy and lose concentration, I seem to be avoiding most of the painful physical ailments.
Fingers crossed, my stomach even seems to be continuining to behave a little better with fewer vomiting episodes.
I suspect the tiredness will start to become more of a problem during my last few treatments though as my red blood cells will probably continue to drop. But one day at a time. Those ninjas need the energy and blood to fight the cancer. If need be, I'll get another blood transfusion to boost them up.
Now I'm going to go take advantage of my cooperating stomach and enjoy a hot cuppa java and read a novel. Mmmmm. Enjoy your Sunday.
Tina
One was how well everything went on Friday. My blood levels were acceptable to actually get chemo. While my white blood cells were a little high (I've had a runny nose for the past week and may have a touch of a cold) and my red blood cells were a little low (the chemo is kicking them down), neither put a halt to treatment.
I got the bed in the private room, where Michael and I had a bit more privacy. The nurse also started the saline drip while the blood tests were running (instead of waiting until after) and that simple act shaved an hour off my time stuck to the IV pole. So I was out of there around 1 p.m. to do a little shopping and get on with my day.
I also want to celebrate yesterday. I felt great after chemo, had lots of energy and was able to eat decent meals. In fact, we took this good energy day as an opportunity to reorganize our kitchen. Michael got some shelving units from work, and we made them work in our house to create new and better organized kitchen space. No, they don't match our other cupboards (some of which have been "temporary" since we moved in 1999), but it's an improvement. And with limited funding, sometimes, you just become creative. I'm thrilled with the end result, and I'm happy I was able to put the steroid energy to good use before I start to crash.
I suspect I have one more decent day before the side effects kick in and I'm going to celebrate by having lunch with some friends. But, I have to admit, so far the side effects are generally tolerable. I get tired, bitchy, depressed, lethargic, antsy and lose concentration, I seem to be avoiding most of the painful physical ailments.
Fingers crossed, my stomach even seems to be continuining to behave a little better with fewer vomiting episodes.
I suspect the tiredness will start to become more of a problem during my last few treatments though as my red blood cells will probably continue to drop. But one day at a time. Those ninjas need the energy and blood to fight the cancer. If need be, I'll get another blood transfusion to boost them up.
Now I'm going to go take advantage of my cooperating stomach and enjoy a hot cuppa java and read a novel. Mmmmm. Enjoy your Sunday.
Tina
Friday, February 3, 2012
Ninja infusion
Gather sharp weapons, slip into those black, flowy uniforms and gather in formation my formidable and sneaky little ninjas, for today the next wave of you get to slip in to my body to attack the cancer. Your brothers and sisters must be having a tough fight, and I fear you'll find more than a few casualties and injured as you stealthily make your way to the battlegrounds. But I believe they're finally making inroads and weakening the enemy. Your fresh resolve and renewed strength are needed to weaken and kill those evil disease-filled cells.
Oh I know you're brave, my little friends, and wouldn't choose any other way to use your training and unique strengths; and for that I heartily thank you.
Go get 'em. As you do, my village and I will scream, shout, pray and whisper, "Die cancer die!"
Tina
Oh I know you're brave, my little friends, and wouldn't choose any other way to use your training and unique strengths; and for that I heartily thank you.
Go get 'em. As you do, my village and I will scream, shout, pray and whisper, "Die cancer die!"
Tina
Wednesday, February 1, 2012
Regrets
Since we're all human, fallable and make mistakes, we all have regrets in life. I was reminded of one of mine this morning and I want to share. I learned from it, and maybe you'll glean something from my lesson too.
When I was diagnosed with ovarian cancer a couple of years ago, I learned a friend from high school was also fighting the disease. She was diagnosed a few years before me, fought it and then learned she had lung cancer. The doctors weren't sure of the primary site of the disease - the ovaries or the lungs - but it was taking over her entire body and she was dying from it.
My diagnosis was so new and raw, I couldn't even bring myself to contact her via the safety of the Internet for a while. I wanted to be in denial about where a diagnosis of IIIC ovarian cancer could lead and didn't need a living, breathing, physical reminder of what could happen. (That's also the reason I couldn't - and still haven't - joined any ovarian cancer survivor groups.) I wasn't ready. I wasn't at that stage yet.
Eventually, I mustered up the courage and emailed her, explaining we shared the same fucking disease and apologizing for taking so long to contact her. I explained my fears and how I wasn't ready to hear about where the disease could lead. She was kindly sympathetic and explained she understood. She gently shared parts of her struggle. We commiserated and it was good to talk to her.
She died about a year later. She was in hospice for a while and a person who was a friend to both of us was very involved in visiting and caring for her during her last days. I got updates from this co-friend, but I was never brave enough to go see her myself. In fact, I couldn't even screw up the courage to attend her memorial service. I gave the excuse I was in treatment and I didn't have the energy, but I should have gone.
I regret I didn't visit her. I'm sorry to this day I didn't go to her funeral to say goodbye to a fellow ovarian cancer warrior.
The lesson I learned from this experience is experiences sometimes don't coincide with your timetable. There will be times when you're not ready for the realities life throws at you, but you may have to suck it up and deal with them as they come. I should have visited my old friend. I regret not screwing up the courage to do just that. Now I must live with the regret.
I guess what I'd say about my experience, is don't be afraid to visit someone who is sick or struggling because you're uncomfortable with it. If you have a relationship (or want to even re-establish one) with someone, don't hesitate. (By the way, this is not me talking to anyone in particular about my situation, but speaking generally.) Time has a funny way of sneaking away on us.
Tina
When I was diagnosed with ovarian cancer a couple of years ago, I learned a friend from high school was also fighting the disease. She was diagnosed a few years before me, fought it and then learned she had lung cancer. The doctors weren't sure of the primary site of the disease - the ovaries or the lungs - but it was taking over her entire body and she was dying from it.
My diagnosis was so new and raw, I couldn't even bring myself to contact her via the safety of the Internet for a while. I wanted to be in denial about where a diagnosis of IIIC ovarian cancer could lead and didn't need a living, breathing, physical reminder of what could happen. (That's also the reason I couldn't - and still haven't - joined any ovarian cancer survivor groups.) I wasn't ready. I wasn't at that stage yet.
Eventually, I mustered up the courage and emailed her, explaining we shared the same fucking disease and apologizing for taking so long to contact her. I explained my fears and how I wasn't ready to hear about where the disease could lead. She was kindly sympathetic and explained she understood. She gently shared parts of her struggle. We commiserated and it was good to talk to her.
She died about a year later. She was in hospice for a while and a person who was a friend to both of us was very involved in visiting and caring for her during her last days. I got updates from this co-friend, but I was never brave enough to go see her myself. In fact, I couldn't even screw up the courage to attend her memorial service. I gave the excuse I was in treatment and I didn't have the energy, but I should have gone.
I regret I didn't visit her. I'm sorry to this day I didn't go to her funeral to say goodbye to a fellow ovarian cancer warrior.
The lesson I learned from this experience is experiences sometimes don't coincide with your timetable. There will be times when you're not ready for the realities life throws at you, but you may have to suck it up and deal with them as they come. I should have visited my old friend. I regret not screwing up the courage to do just that. Now I must live with the regret.
I guess what I'd say about my experience, is don't be afraid to visit someone who is sick or struggling because you're uncomfortable with it. If you have a relationship (or want to even re-establish one) with someone, don't hesitate. (By the way, this is not me talking to anyone in particular about my situation, but speaking generally.) Time has a funny way of sneaking away on us.
Tina
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