The world wide web (www) is an amazing place. It connects us to information, entertainment and individuals. I started this blog to stay in touch with my family and friends as I struggle through my cancer diagnosis and journey. Over the past few days, I've discovered how my writing and the thin filaments of the web can connect me to new friends.
These new friends understand the cancer journey or the burden of being BRCA positive. They, through their writing or comments on my blog, provide information about the cancer journey, help me understand what to expect or offer new ideas to consider.
A few weeks ago, a women from Edmonton started writing encouraging comments on my blog. She understood my sleepless nights and the fog the chemo can bring. I was amazed a stranger would be interested in my story. In return, I went on her blog to discover she's struggling with breast cancer. Her situation is quite different, but I could sympathize with many of her tribulations.
Her blog listed dozens of other cancer blogs. I randomly selected one to find a woman from the London area who is about one year ahead of me in the ovarian cancer battle. I immediately read her entire blog, grasping at information about what my future may hold. She mentioned some of the same doctors, oncology nurses and chemotherapy nurses who are currently part of my life. I could relate to many of her feelings and experiences.
It took me some time to reach out to this woman and post on her blog. I don't know if I was reluctant to make contact because I may learn information I'm scared to face. Perhaps I was secure in my own little cocoon, fighting my battle. But I'm realizing these other woman can be a source of strength and comfort.
So I posted a comment on her blog, telling her she's an inspiration to me and that I too hope to be in remission one day. As a result of this post, I got two new women reaching out through comments on my blog.
One, from the United Kingdom, finished treatment two years ago for ovarian and cervical cancer (at the same time!). She too fought this terrible disease and won - proof positive it can happen. She's living her life with enthusiasm and hope. That's a wonderful source of inspiration for me.
Then, I was contacted by a woman who has also tested positive for the BRCA gene. Her blog discusses her diagnosis and reaction to it. Although she doesn't have cancer (she's a previvor), because of the awful statistics that BRCA carriers will get breast cancer, she's decided to get a preventative double mastectomy and reconstructive surgery.
I've been mulling her words around in my head all weekend (yes, I read her entire blog too). Are my breasts ticking time bombs? I already have one cancer associated with the BRCA gene, do I want to face breast cancer too? What are the chances? I guess I'll get more information and the answers to these questions when I meet with the breast specialist, Dr. B., on Oct. 7.
But all this new information and experiences makes me pause to consider my situation. I also am blessed with the very relevant experiences of my cousin, who is also BRCA-1 positive. She been through the breast cancer fight and won (for over 20 years). She's had the double mastectomy and bilateral salpingo oopherectomy to remove her uterus, ovaries and tubes. She faced the monster and beat it.
It's overwhelming processing all this information and the life-changing decisions. I was tearfully angry last night I have to face this. Why on earth did my family get this awful gene? Why am I fighting cancer at age 42 (and why does anyone have to face this God-awful disease)? Why do I have to consider cutting off healthy (as of right now) breast tissue to potentially save my life? Am I not scarred and beaten enough?
The emotional roller coaster of this journey is full of ups and downs. I should be enjoying this week before chemotherapy on Friday - my LAST chemotherapy - but instead I'm full of conflicting emotions. Perhaps I'm afraid because it's my last chemo treatment and afterwards I'll be in the free fall state of "let's see if this worked." I know it sounds insane since I hate chemo and all the awful side-effects it brings, but perhaps I'm afraid to go without it because I'm scared the cancer will return.
But I have to remember I'm alive - and I will continue to fight - even if I am scared and angry right now.
Tina
Monday, August 31, 2009
Saturday, August 29, 2009
First sleepover
I am so tired today. My 8-year-old daughter experienced her very first friend sleepover last night. They talked and giggled until until the wee hours. In fact, I walked in on a countdown for 1:01 a.m. because they could make a wish at that time (the wonderful imagination of little girls).
But Tara's room is right beside ours. I heard all the giggling, talking, moving around and general noise. I fell asleep briefly around 10:30 p.m., but then woke and laid awake listening to the muffled shenanigans. I visited the room several times with requests they go to sleep. Finally, I told Tara this would be her last sleepover unless they actually slept. That seemed to do the trick.
The numerous visits to her room and the late hour when I finally fell asleep are manifesting themselves today. I'm tired. I've been tired all week and the lack of good sleep last night was the icing on the cake. I'm going to try to keep most of the grumpiness in check but I have a feeling some may slither out at inopportune times today.
Tara's sleepover brought back good memories for me though. I remember countless sleepovers with my friend, Val or my cousins, Margie and Monica. We'd talk, run around, play, cook ourselves breakfast and giggle. It was great fun sharing nights with them.
So I can't bregrudge Tara this magical childhood experience, but last night, I did wish their tiredness kicked in a couple of hours earlier.
I know my cancer journey makes me more tired and the interrupted sleep contributes to the exhaustion. But then again, maybe I'm just getting old. I have a feeling it'll be an early-to-bed night for a couple of people in our household tonight.
Your old and tired friend,
Tina
But Tara's room is right beside ours. I heard all the giggling, talking, moving around and general noise. I fell asleep briefly around 10:30 p.m., but then woke and laid awake listening to the muffled shenanigans. I visited the room several times with requests they go to sleep. Finally, I told Tara this would be her last sleepover unless they actually slept. That seemed to do the trick.
The numerous visits to her room and the late hour when I finally fell asleep are manifesting themselves today. I'm tired. I've been tired all week and the lack of good sleep last night was the icing on the cake. I'm going to try to keep most of the grumpiness in check but I have a feeling some may slither out at inopportune times today.
Tara's sleepover brought back good memories for me though. I remember countless sleepovers with my friend, Val or my cousins, Margie and Monica. We'd talk, run around, play, cook ourselves breakfast and giggle. It was great fun sharing nights with them.
So I can't bregrudge Tara this magical childhood experience, but last night, I did wish their tiredness kicked in a couple of hours earlier.
I know my cancer journey makes me more tired and the interrupted sleep contributes to the exhaustion. But then again, maybe I'm just getting old. I have a feeling it'll be an early-to-bed night for a couple of people in our household tonight.
Your old and tired friend,
Tina
Friday, August 28, 2009
Discrimination and statistics
I was shocked and appalled. As I was doing my research for yesterday's blog, I came across a information about individuals experiencing discrimination from their employers and insurance companies for testing positive for the BRCA genes.
Call me naive, but I'd never even imagined that could happen. I know as one who experienced cancer, I don't qualify for some insurances, etc. But I didn't imagine an employer would try to get rid of an employee (for so-called other reasons) for something beyond an individual's control - and who could live and be a productive worker for a long, long time.
Luckily, I work for a pretty amazing company with unbelievably supportive people who have stood behind me every step of the way.
I was also reading some survivor statistics yesterday too - and you know how I detest statistics. They always seem to be so bad. (Yes, I know these poor survivor statistics seem to support the reason for the discrimination mentioned above. Yet, no one has any guarantees in life and to turf an employee because they could get sick and leave seems inhumane to me.)
The survivor statistics did reinforce I have to live for today. I can't get stuck in the rut of life and not enjoy it, waiting for tomorrow. None of us know when our time to go will come. No one knows how many tomorrows we actually have to live, laugh and love.
I plan to go into remission and then stay cancer free for years, but I'm not promised x number of days. Like anyone else, I could get run over by a bus while crossing the street. I don't want to say, "Oh, I wish I had . . ."
Live without boundaries, love without regret.
Tina
Call me naive, but I'd never even imagined that could happen. I know as one who experienced cancer, I don't qualify for some insurances, etc. But I didn't imagine an employer would try to get rid of an employee (for so-called other reasons) for something beyond an individual's control - and who could live and be a productive worker for a long, long time.
Luckily, I work for a pretty amazing company with unbelievably supportive people who have stood behind me every step of the way.
I was also reading some survivor statistics yesterday too - and you know how I detest statistics. They always seem to be so bad. (Yes, I know these poor survivor statistics seem to support the reason for the discrimination mentioned above. Yet, no one has any guarantees in life and to turf an employee because they could get sick and leave seems inhumane to me.)
The survivor statistics did reinforce I have to live for today. I can't get stuck in the rut of life and not enjoy it, waiting for tomorrow. None of us know when our time to go will come. No one knows how many tomorrows we actually have to live, laugh and love.
I plan to go into remission and then stay cancer free for years, but I'm not promised x number of days. Like anyone else, I could get run over by a bus while crossing the street. I don't want to say, "Oh, I wish I had . . ."
Live without boundaries, love without regret.
Tina
Thursday, August 27, 2009
BRCA-1 test results
Without any fanfare or "may I have the envelope please," Dr. A. announced the results of our BRCA-1 gene tests yesterday.
After 15 weeks of waiting, we weren't surprised to learn I carry the BRCA-1 gene and my mom, as a result, is a carrier and has it too. My sister tested negative, thank God. It's the Belgian strain of the gene from my mother's side of the family.
Now Dr. A. said there's no way to be 100 per cent sure, yadda, yadda, yadda. But since I have ovarian cancer at 42 (and almost kicked its butt), I'd already assumed my test result would be positive. So no big surprise for me or my mom.
Dr. A. got all technical again yesterday talking about genes, proteins, pre-cursor lesions, etc. I understood the general gist. My cancer is serous papillary carcinoma due to loss of DNA repair. In other words, the part of my DNA related to the BRCA-1 gene is damaged, so it didn't work properly to kill off the abnormal cancer cells.
BRCA-1 and BRCA-2 genes belong to a class of gene called tumour suppressors. When they're normal, they help prevent uncontrolled cell growth. Harmful BRCA-1 mutations increase a woman’s risk of developing breast, ovarian, cervical, uterine, pancreatic and colon cancer. In men, it increases the risk of breast, pancreatic, testicular and early-onset prostate cancer.
Dr. A said the current working theory is the BRCA-1 related ovarian cancer may originate in the fallopian tube rather than the ovary. It then loosens and implants elsewhere - in my case, in the fatty lining of my stomach called the omentum.
I asked if this working scenario affected my treatment and prognosis. He said, yes, explaining this type of cancer tends to respond very well to platin-types of chemotherapy (I'm on carboplatin - which apparently is potent and one of the reasons I feel so terrible). But if it works to kill those nasty cancer cells, I'm all for it.
The good news is the prognosis for BRCA-1 gene-related ovarian cancer is better than the typical ovarian cancer. Yippee! In addition, I may qualify for a clinical trial studying a means of replacing the damaged gene in the DNA to prevent cancer reoccurence called a PARP inhibitor. Apparently, the PARP inhibitors have few side effects. So now I need to talk to Dr. P. about getting me into the clinical trial.
I learned an interesting statistic from Dr. A yesterday. Apparently, only three per cent of those who develop breast cancer and 10 per cent of those with ovarian cancer carry the BRCA-1 or -2 gene.
According to some research I did on the National Cancer Institute's (www.cancer.gov/cancertopics/factsheet/risk/brca) website this morning, having the BRCA-1 gene increases the risk of contracting ovarian or breast cancer exponentially. The lifetime risk for a woman in the general population to develop breast cancer is 12 per cent, while those who inherit the harmful mutation have a 60 per cent risk (Dr. A. said 50 to 90 per cent). The risk is cut in half for women who undergo the bilateral salpingo-oopherectomy (removal of ovaries and fallopian tubes - which I had, and then some).
For ovarian cancer, women have a 1.4 per cent lifetime risk of contracting the disease, while for those with the BRCA-1 or BRCA-2 mutation, it increases to 15 to 40 per cent.
Since my mom is a carrier (but luckily hasn't developed cancer), she's going to discuss possible preventative measures she can take (bilateral salpino-oopherectomy, bi-lateral mastectomy, screening measures, etc.) with a gynaecologist and a breast specialist. I will also meet with the breast specialist to discuss my risks and options. The answer may be more/better screening or more drastic preventative measures.
Angie, even though she tested negative, will still meet with a gynaecologist and breast specialist so she can undergo the necessary screening. Like she said yesterday, she's lucky because she tested negative for the gene but still qualifies for the precautionary screening.
As for my kids, they'll need to be tested 10 years prior to any evidence of disease appearing in our family. So at 24 years old, they'll need to undergo the BRCA-1 screening. But with all the research, medical breakthroughs and technology, researchers may have discovered a cure or a better way to prevent the gene-related cancers from developing by the time they're ready for testing. I pray to God that's true.
So, in short, having this gene sucks. But the good news is it seems to respond well to treatment, we're now aware we have it so we can have the necessary screening to try to catch any evidence of disease and, best of all, lots of research is being conducted on this topic. So, the chances of discovering new and better ways of treating and preventing cancers caused by this gene mutation are good.
In the meantime, I'll keep fighting my cancer, try to get into the PARP inhibitor clinical trial and pray.
Tina
After 15 weeks of waiting, we weren't surprised to learn I carry the BRCA-1 gene and my mom, as a result, is a carrier and has it too. My sister tested negative, thank God. It's the Belgian strain of the gene from my mother's side of the family.
Now Dr. A. said there's no way to be 100 per cent sure, yadda, yadda, yadda. But since I have ovarian cancer at 42 (and almost kicked its butt), I'd already assumed my test result would be positive. So no big surprise for me or my mom.
Dr. A. got all technical again yesterday talking about genes, proteins, pre-cursor lesions, etc. I understood the general gist. My cancer is serous papillary carcinoma due to loss of DNA repair. In other words, the part of my DNA related to the BRCA-1 gene is damaged, so it didn't work properly to kill off the abnormal cancer cells.
BRCA-1 and BRCA-2 genes belong to a class of gene called tumour suppressors. When they're normal, they help prevent uncontrolled cell growth. Harmful BRCA-1 mutations increase a woman’s risk of developing breast, ovarian, cervical, uterine, pancreatic and colon cancer. In men, it increases the risk of breast, pancreatic, testicular and early-onset prostate cancer.
Dr. A said the current working theory is the BRCA-1 related ovarian cancer may originate in the fallopian tube rather than the ovary. It then loosens and implants elsewhere - in my case, in the fatty lining of my stomach called the omentum.
I asked if this working scenario affected my treatment and prognosis. He said, yes, explaining this type of cancer tends to respond very well to platin-types of chemotherapy (I'm on carboplatin - which apparently is potent and one of the reasons I feel so terrible). But if it works to kill those nasty cancer cells, I'm all for it.
The good news is the prognosis for BRCA-1 gene-related ovarian cancer is better than the typical ovarian cancer. Yippee! In addition, I may qualify for a clinical trial studying a means of replacing the damaged gene in the DNA to prevent cancer reoccurence called a PARP inhibitor. Apparently, the PARP inhibitors have few side effects. So now I need to talk to Dr. P. about getting me into the clinical trial.
I learned an interesting statistic from Dr. A yesterday. Apparently, only three per cent of those who develop breast cancer and 10 per cent of those with ovarian cancer carry the BRCA-1 or -2 gene.
According to some research I did on the National Cancer Institute's (www.cancer.gov/cancertopics/factsheet/risk/brca) website this morning, having the BRCA-1 gene increases the risk of contracting ovarian or breast cancer exponentially. The lifetime risk for a woman in the general population to develop breast cancer is 12 per cent, while those who inherit the harmful mutation have a 60 per cent risk (Dr. A. said 50 to 90 per cent). The risk is cut in half for women who undergo the bilateral salpingo-oopherectomy (removal of ovaries and fallopian tubes - which I had, and then some).
For ovarian cancer, women have a 1.4 per cent lifetime risk of contracting the disease, while for those with the BRCA-1 or BRCA-2 mutation, it increases to 15 to 40 per cent.
Since my mom is a carrier (but luckily hasn't developed cancer), she's going to discuss possible preventative measures she can take (bilateral salpino-oopherectomy, bi-lateral mastectomy, screening measures, etc.) with a gynaecologist and a breast specialist. I will also meet with the breast specialist to discuss my risks and options. The answer may be more/better screening or more drastic preventative measures.
Angie, even though she tested negative, will still meet with a gynaecologist and breast specialist so she can undergo the necessary screening. Like she said yesterday, she's lucky because she tested negative for the gene but still qualifies for the precautionary screening.
As for my kids, they'll need to be tested 10 years prior to any evidence of disease appearing in our family. So at 24 years old, they'll need to undergo the BRCA-1 screening. But with all the research, medical breakthroughs and technology, researchers may have discovered a cure or a better way to prevent the gene-related cancers from developing by the time they're ready for testing. I pray to God that's true.
So, in short, having this gene sucks. But the good news is it seems to respond well to treatment, we're now aware we have it so we can have the necessary screening to try to catch any evidence of disease and, best of all, lots of research is being conducted on this topic. So, the chances of discovering new and better ways of treating and preventing cancers caused by this gene mutation are good.
In the meantime, I'll keep fighting my cancer, try to get into the PARP inhibitor clinical trial and pray.
Tina
Wednesday, August 26, 2009
The feeling of fall
I know we didn't really have a summer, except for a week or so, but I can feel the encrouching presence of fall. The leaves started dropping from the weeping mulberry bush in my front yard and the impending single digit temperatures at the night confirm this suspicion.
Of course, the kids head back to school within the next couple of weeks. I don't know if it's ingrained in me from my own childhood and my decades of returning to school in September, but the fall has always been a time of new beginning for me. A time to be more productive, start something new or refresh an attitude.
I think it's all those years of new school supplies. I had a sharp new pencil and an unmarked notebook, so the possibilities for success in the upcoming school year were endless.
I feel I've dedicated the past five months (with a sixth to come) of my life fighting cancer. During this time, I've learned a lot about myself and the disease, read numerous books, reconnected with people and expanded my writing through this blog. While I haven't felt very productive, it hasn't been time wasted.
When I've recovered from my last chemotherapy session, I can concentrate on moving forward. But because the kids are heading back to school and I'm tired of the cancer fight, I'm anxious to start now.
I'm ready to grasp the freshly-sharpened pencil and crack open that unmarked notebook, because the possibilities are endless.
Tina
Of course, the kids head back to school within the next couple of weeks. I don't know if it's ingrained in me from my own childhood and my decades of returning to school in September, but the fall has always been a time of new beginning for me. A time to be more productive, start something new or refresh an attitude.
I think it's all those years of new school supplies. I had a sharp new pencil and an unmarked notebook, so the possibilities for success in the upcoming school year were endless.
I feel I've dedicated the past five months (with a sixth to come) of my life fighting cancer. During this time, I've learned a lot about myself and the disease, read numerous books, reconnected with people and expanded my writing through this blog. While I haven't felt very productive, it hasn't been time wasted.
When I've recovered from my last chemotherapy session, I can concentrate on moving forward. But because the kids are heading back to school and I'm tired of the cancer fight, I'm anxious to start now.
I'm ready to grasp the freshly-sharpened pencil and crack open that unmarked notebook, because the possibilities are endless.
Tina
Tuesday, August 25, 2009
Time
Dost thou love life? Then do not squander time, for that is the stuff life is made of. - Benjamin Franklin
Old Ben was a smart man (even if he erroneously ended that sentence in a preposition - argh!). Life is made up of seconds, minutes, hours, days, months and years, and it's up to each of us to make the time allotted important and meaningful.
That doesn't mean every day has to be filled with serious, important or life-changing activities. Life isn't like that or we'd all be exhausted. Some days will bring tedious work, ugly weather, disagreements, sickness, sadness or frustration (but hopefully not all on the same day).
The essence of this quote, and what I've learned from cancer, is beauty and good exists in every day. I have to discover it and choose to make each day matter to me.
It can be as simple as hugging my family, enjoying coffee with a friend, relishing a job well done, sharing a laugh, relaxing in front of the TV, savouring the ripe fruit in a pie, appreciating the smell of Downy while doing laundry, crawling into crisp, clean sheets or watching the colour of the sky as it fades during twilight.
I look for joy every day. I try to shake off frustration and anger. I'm getting better at choosing activities I want to do as opposed to the ones I should do. I attempt to look for good in situations, instead of harping about what's wrong with them.
It's not always easy, but it brings me more happiness.
It's far more rewarding to experience contentment during that time we call life. Find something that makes you joyful today and make the time count.
Tina
Old Ben was a smart man (even if he erroneously ended that sentence in a preposition - argh!). Life is made up of seconds, minutes, hours, days, months and years, and it's up to each of us to make the time allotted important and meaningful.
That doesn't mean every day has to be filled with serious, important or life-changing activities. Life isn't like that or we'd all be exhausted. Some days will bring tedious work, ugly weather, disagreements, sickness, sadness or frustration (but hopefully not all on the same day).
The essence of this quote, and what I've learned from cancer, is beauty and good exists in every day. I have to discover it and choose to make each day matter to me.
It can be as simple as hugging my family, enjoying coffee with a friend, relishing a job well done, sharing a laugh, relaxing in front of the TV, savouring the ripe fruit in a pie, appreciating the smell of Downy while doing laundry, crawling into crisp, clean sheets or watching the colour of the sky as it fades during twilight.
I look for joy every day. I try to shake off frustration and anger. I'm getting better at choosing activities I want to do as opposed to the ones I should do. I attempt to look for good in situations, instead of harping about what's wrong with them.
It's not always easy, but it brings me more happiness.
It's far more rewarding to experience contentment during that time we call life. Find something that makes you joyful today and make the time count.
Tina
Monday, August 24, 2009
Sleepless in East London
The crickets are chirping and the cool wind blows in the windows. It's the perfect night for sleeping, but I'm not. I know when the sun shines brightly in the sky tomorrow, I'll regret my body's wakefulness.
After lying in bed for over an hour, trying to go back to sleep, I'm up. I figured I may as well blog. Maybe it'll make me tired. Before I woke at 1:36 a.m., I had weird menagerie of dreams that flowed from a casino to writing on Michael's forehead with a Sharpie to grapefruit-sized hail that killed people in the Toronto area. Very strange.
I didn't take my lorazepam last night. Maybe that's the root of the problem with the dreams and the inability to go back to sleep. But I figured I was tired enough and could do without the drug. Truthfully, I was hoping to be able to do without it. Sigh.
It was a crazy weekend with birthday celebrations and Tara had fun (the most important goal). Unfortunately, the past few days also involved lingering chemotherapy side effects. As I wrote on Thursday, I was feeling better and hoped I was improving. But I went back downhill on Friday and Saturday, suffering bone pain, burning sensations, heartburn and general discomfort.
Yesterday was much better. Athough I'm nervous because I still have a spot on the back of my right hand with no feeling. I'm afraid I've developed peripheral neuropathy. Chemotherapy is designed to destroy cancer cells, but it also damages or destroys other healthy cells in the body, including peripheral nerve cells. It can be temporary, but sometimes it can be permanent - and that scares me.
I've suffered most of the side effects of:
- Tingling
- Burning
- Weakness or numbness in the hands and/or feet
- Pain when walking
- Weak, sore, tired or achy muscles
- Loss of balance
- Clumsiness
- Difficulty picking up objects and buttoning clothing
- Shaking or trembling
- Walking problems
- Jaw pain
- Hearing loss
- Stomach pain
- Constipation
The website I referenced recommended telling my doctor, so I'll be calling the cancer clinic this week to let my chemo nurse know. I'm not sure if Dr. P. will change my chemotherapy dosage at this point, but it's good to let him know what's happening.
As I sit here and type at 3:30 in the morning, I feel worn down in many different ways. I'm praying for a better week with fewer physical symptoms, a better relationship with Michael and my kids, and improved mental health. I'm cautiously hopeful.
But I'll have a better chance of success if I get some sleep, so back to bed I go.
Goodnight/good morning.
Tina
After lying in bed for over an hour, trying to go back to sleep, I'm up. I figured I may as well blog. Maybe it'll make me tired. Before I woke at 1:36 a.m., I had weird menagerie of dreams that flowed from a casino to writing on Michael's forehead with a Sharpie to grapefruit-sized hail that killed people in the Toronto area. Very strange.
I didn't take my lorazepam last night. Maybe that's the root of the problem with the dreams and the inability to go back to sleep. But I figured I was tired enough and could do without the drug. Truthfully, I was hoping to be able to do without it. Sigh.
It was a crazy weekend with birthday celebrations and Tara had fun (the most important goal). Unfortunately, the past few days also involved lingering chemotherapy side effects. As I wrote on Thursday, I was feeling better and hoped I was improving. But I went back downhill on Friday and Saturday, suffering bone pain, burning sensations, heartburn and general discomfort.
Yesterday was much better. Athough I'm nervous because I still have a spot on the back of my right hand with no feeling. I'm afraid I've developed peripheral neuropathy. Chemotherapy is designed to destroy cancer cells, but it also damages or destroys other healthy cells in the body, including peripheral nerve cells. It can be temporary, but sometimes it can be permanent - and that scares me.
I've suffered most of the side effects of:
- Tingling
- Burning
- Weakness or numbness in the hands and/or feet
- Pain when walking
- Weak, sore, tired or achy muscles
- Loss of balance
- Clumsiness
- Difficulty picking up objects and buttoning clothing
- Shaking or trembling
- Walking problems
- Jaw pain
- Hearing loss
- Stomach pain
- Constipation
The website I referenced recommended telling my doctor, so I'll be calling the cancer clinic this week to let my chemo nurse know. I'm not sure if Dr. P. will change my chemotherapy dosage at this point, but it's good to let him know what's happening.
As I sit here and type at 3:30 in the morning, I feel worn down in many different ways. I'm praying for a better week with fewer physical symptoms, a better relationship with Michael and my kids, and improved mental health. I'm cautiously hopeful.
But I'll have a better chance of success if I get some sleep, so back to bed I go.
Goodnight/good morning.
Tina
Saturday, August 22, 2009
Pain and worry
Since yesterday was Tara's birthday, I had to appear reasonably okay. We did some shopping for her parties, ate Pizza Pizza for lunch, visited the children's museum, and then made tacos and brownies together for her birthday supper.
But yesterday was a bad one for pain - bone pain, abdominal pain and heartburn.
I started experiencing the loss of sensation I was warned about on the top of my right hand Friday night. It may or may not return. I'm hoping since it didn't happen until my second last treatment, it won't be a permanent condition.
I'm also getting burning sensations in my hands and feet this time around. My nurse said it's from my racing blood, as it tries to rid iteself of the toxins. My pulse rate soars into the 90s sometimes (it was nicely in the 50s and low 60s before this all happened).
I've got toxic chemicals coursing through my body over and over. Of course, it's going to damage some of the healthy tissue. I worry about how healthy my organs, bones and skin will be after this ordeal. How will my poor body be left at the end of it all?
This recovery cycle is longer. I guess after being battered for a fifth time, the healthy cells are staggering as they get up. One more time. Hang in there for one more time.
Overall, I feel sad and worried this morning. But it's two more days of birthday celebrations so hopefully the pain wanes and the activities improve my mood. With this cancer and recovery, things change from day to day, so who knows what today will bring.
Here's hoping your weekend is a good one.
Tina
But yesterday was a bad one for pain - bone pain, abdominal pain and heartburn.
I started experiencing the loss of sensation I was warned about on the top of my right hand Friday night. It may or may not return. I'm hoping since it didn't happen until my second last treatment, it won't be a permanent condition.
I'm also getting burning sensations in my hands and feet this time around. My nurse said it's from my racing blood, as it tries to rid iteself of the toxins. My pulse rate soars into the 90s sometimes (it was nicely in the 50s and low 60s before this all happened).
I've got toxic chemicals coursing through my body over and over. Of course, it's going to damage some of the healthy tissue. I worry about how healthy my organs, bones and skin will be after this ordeal. How will my poor body be left at the end of it all?
This recovery cycle is longer. I guess after being battered for a fifth time, the healthy cells are staggering as they get up. One more time. Hang in there for one more time.
Overall, I feel sad and worried this morning. But it's two more days of birthday celebrations so hopefully the pain wanes and the activities improve my mood. With this cancer and recovery, things change from day to day, so who knows what today will bring.
Here's hoping your weekend is a good one.
Tina
Friday, August 21, 2009
Eight
She turns her tanned face to me with its sprinkling of freckles, sparkling brown eyes and curly brown hair, and I marvel she's my little girl. On a glorious summer night eight years ago, my baby, Tara, was born.
She made her appearance, after a long struggle, via c-section at five seconds to midnight. Michael watched the clock to ensure we got her birthday right.
So today, the Bratscher/Thomas family celebrates the birth of our surprise child. After almost dying delivering Noah, we'd decided our family of three would be enough. But God had different plans and now she brightens our family with her intelligence, whimsy, beauty and smiles. (Besides, I think it's good for Noah to have a sibling.)
If I were my mom, I'd say, I'm too young for my baby to turn eight. But I started having my kids later in life, so that's obviously not true.
When I found out I had cancer, I cried bitter tears at the thought of dying and leaving my kids. Tara is way too young and I was afraid she'd only have vague recollections of her mother. I have a good memory and mine from age seven are scattered and inprecise. (And Noah needs me for a variety of other reasons.)
I'm thankful I seem to have beaten this cancer - although I can never be 100 per cent sure - because I can participate as my kids grow up.
And today, I get to celebrate as my little girl turns 8!
Happy birthday, Tara. I love you.
Tina (Mom)
She made her appearance, after a long struggle, via c-section at five seconds to midnight. Michael watched the clock to ensure we got her birthday right.
So today, the Bratscher/Thomas family celebrates the birth of our surprise child. After almost dying delivering Noah, we'd decided our family of three would be enough. But God had different plans and now she brightens our family with her intelligence, whimsy, beauty and smiles. (Besides, I think it's good for Noah to have a sibling.)
If I were my mom, I'd say, I'm too young for my baby to turn eight. But I started having my kids later in life, so that's obviously not true.
When I found out I had cancer, I cried bitter tears at the thought of dying and leaving my kids. Tara is way too young and I was afraid she'd only have vague recollections of her mother. I have a good memory and mine from age seven are scattered and inprecise. (And Noah needs me for a variety of other reasons.)
I'm thankful I seem to have beaten this cancer - although I can never be 100 per cent sure - because I can participate as my kids grow up.
And today, I get to celebrate as my little girl turns 8!
Happy birthday, Tara. I love you.
Tina (Mom)
Thursday, August 20, 2009
I'm baaaack
Coffee tastes good again.
I notice the mutli-hued colours in the sky.
I have more patience with my wonderful family.
I care what's for dinner.
I'm a better conversationalist.
I plan and think about the future.
I know it's dumb, but I know I'm getting over the post-chemo symptoms when I start to care about what my house looks like. I notice the crumbs stuck to the bottom of the kitchen sink and around the toaster. I cringe at the toothpaste congealed in the bathroom sink. The dust on the furniture mocks me with its pervasive presence. And I feel the need to clean.
Don't worry, I don't do much. I wipe up the crumbs and do a quick rinse of the sinks. Just enough that my house isn't completely embarassing if someone were to drop by. Luckily, my housekeeper comes today and she'll make everything shiny and clean again (and that mocking dust will be history).
The house awareness is simply a sign that I'm participating in life again. I'm happy to be back. I appreciate all life's little intricate blessings more these first few days. I actually wish I could capture this feeling of gratitude and relief to pull out on mundane or frustrating days. It certainly is a lesson in how wonderful normal life can be.
You never know how good you've got it, until it's gone - even temporarily.
So, I'm thankful for:
1. My family and friends, who didn't let me flounder yet again.
2. My doctors and health care professionals working to eradicate the cancer in my body.
3. The ability to see, touch, taste, feel and smell the world around me. It truly is a wonderful place.
4. The experiences I've had and the ones to come.
5. That I only have ONE more chemotherapy treatment left.
Enjoy your today.
Tina
I notice the mutli-hued colours in the sky.
I have more patience with my wonderful family.
I care what's for dinner.
I'm a better conversationalist.
I plan and think about the future.
I know it's dumb, but I know I'm getting over the post-chemo symptoms when I start to care about what my house looks like. I notice the crumbs stuck to the bottom of the kitchen sink and around the toaster. I cringe at the toothpaste congealed in the bathroom sink. The dust on the furniture mocks me with its pervasive presence. And I feel the need to clean.
Don't worry, I don't do much. I wipe up the crumbs and do a quick rinse of the sinks. Just enough that my house isn't completely embarassing if someone were to drop by. Luckily, my housekeeper comes today and she'll make everything shiny and clean again (and that mocking dust will be history).
The house awareness is simply a sign that I'm participating in life again. I'm happy to be back. I appreciate all life's little intricate blessings more these first few days. I actually wish I could capture this feeling of gratitude and relief to pull out on mundane or frustrating days. It certainly is a lesson in how wonderful normal life can be.
You never know how good you've got it, until it's gone - even temporarily.
So, I'm thankful for:
1. My family and friends, who didn't let me flounder yet again.
2. My doctors and health care professionals working to eradicate the cancer in my body.
3. The ability to see, touch, taste, feel and smell the world around me. It truly is a wonderful place.
4. The experiences I've had and the ones to come.
5. That I only have ONE more chemotherapy treatment left.
Enjoy your today.
Tina
Wednesday, August 19, 2009
Hump day
Wednesday is affectionally known as hump day. It's the middle of the traditional work week, so at noon today, it's closer to the weekend than Monday morning.
This hump day takes on a different meaning for me because I'm starting to get over some of the chemotherapy side effects. Yay! I'm climbing over the hump from the self-involved, painful fog, which is the weirdest sensation, and one I abhor. It's like I'm experiencing life, but not really participating.
I'm aware of what's going on around me, but don't have the energy or interest to participate. I feel like I'm stuck in muck and should respond (or respond differently), but can't. And I feel like I'm missing out on my life and making mistakes while in that state. Thank God it's leaving and there's only one more.
It's very hard to explain, but I'm guessing it'd be similar to being under the influence of strong drugs - some awareness, little interest. Unfortunately, mine is accompanied by pain instead of spaced-out bliss.
The out-of-body oppression, accompanying weakness and heat kept me indoors over the past couple of days. But I plan to get outside for at least a brief walk today because the breeze feels good. And I have to start getting my butt in gear to prepare for my daughter's birthday on the weekend. Good thing I'm starting to feel better.
Happy hump day,
Tina
This hump day takes on a different meaning for me because I'm starting to get over some of the chemotherapy side effects. Yay! I'm climbing over the hump from the self-involved, painful fog, which is the weirdest sensation, and one I abhor. It's like I'm experiencing life, but not really participating.
I'm aware of what's going on around me, but don't have the energy or interest to participate. I feel like I'm stuck in muck and should respond (or respond differently), but can't. And I feel like I'm missing out on my life and making mistakes while in that state. Thank God it's leaving and there's only one more.
It's very hard to explain, but I'm guessing it'd be similar to being under the influence of strong drugs - some awareness, little interest. Unfortunately, mine is accompanied by pain instead of spaced-out bliss.
The out-of-body oppression, accompanying weakness and heat kept me indoors over the past couple of days. But I plan to get outside for at least a brief walk today because the breeze feels good. And I have to start getting my butt in gear to prepare for my daughter's birthday on the weekend. Good thing I'm starting to feel better.
Happy hump day,
Tina
Tuesday, August 18, 2009
Joy and pain
Joy
I have two reasons to be happy and thankful
My CA-125 is now 28! Normal is considered less than 35. I've reached this goal before these last two chemotherapy treatments even attack the cancer. I'm was so happy when I got that news from my nurse yesterday.
The genetics labs finally completed the bloodwork to determine if my mom, sister and I have the BCRA-1 gene. I phoned yesterday, anxious for an answer. The result of this test may affect the decision I make for post care once my treatments are done. Besides, Dr. A said it would take six to eight weeks for results and it's been double that amount of time.
So next Wednesday morning, my mom, sister and I have an appointment to discuss these results (no, they won't tell you on the phone) and the implications.
Pain
The bone pain and tired, helpless feelings started again yesterday afternoon. I was lucky they held off that long, but now I feel terrible. I have a feeling it's going to be a long day. But then it'll be over and I can move forward again.
Yesterday afternoon also brought a psychological type of pain. I was eating a soft mint to get rid of the metallic taste in my mouth, only to have a chunk of my front tooth fall off. Along with everything else (bald, zits, weight gain), my tooth decided to chip. Luckily, I can get in to see my dentist later this week. I have to be careful to avoid scraping or things that will make me bleed the first two weeks after chemo, but she assures me the fix is as gentle as brushing my teeth.
The worst - and almost inevitable - pain
The tension in the Bratscher family due to cancer, treatment, worry, lack of schedules, relaxed discipline and incredible pressure came to a head last night. Everyone is on edge.
Noah isn't getting the routine and structure a bipolar kid needs. Poor Tara isn't on a regular sleeping schedule and just wants to be a kid enjoying her summer (but who has an aggressive older brother). Michael is trying to hold us together, and deal with the intense pressures of work and home. And during these post-chemo weeks, I don't have the energy to do anything or help in any way.
This is one of those events that test a family. Luckily, we're strong and love each other an awful lot. I know we'll get through this, but it's not easy.
So needless to say, I had a terrible, restless sleep last night. I woke up a lot, had weird dreams and worried. It may be a blessing it's supposed to rain today because the weather will match my mood.
But let the sun come out tomorrow.
Tina
I have two reasons to be happy and thankful
My CA-125 is now 28! Normal is considered less than 35. I've reached this goal before these last two chemotherapy treatments even attack the cancer. I'm was so happy when I got that news from my nurse yesterday.
The genetics labs finally completed the bloodwork to determine if my mom, sister and I have the BCRA-1 gene. I phoned yesterday, anxious for an answer. The result of this test may affect the decision I make for post care once my treatments are done. Besides, Dr. A said it would take six to eight weeks for results and it's been double that amount of time.
So next Wednesday morning, my mom, sister and I have an appointment to discuss these results (no, they won't tell you on the phone) and the implications.
Pain
The bone pain and tired, helpless feelings started again yesterday afternoon. I was lucky they held off that long, but now I feel terrible. I have a feeling it's going to be a long day. But then it'll be over and I can move forward again.
Yesterday afternoon also brought a psychological type of pain. I was eating a soft mint to get rid of the metallic taste in my mouth, only to have a chunk of my front tooth fall off. Along with everything else (bald, zits, weight gain), my tooth decided to chip. Luckily, I can get in to see my dentist later this week. I have to be careful to avoid scraping or things that will make me bleed the first two weeks after chemo, but she assures me the fix is as gentle as brushing my teeth.
The worst - and almost inevitable - pain
The tension in the Bratscher family due to cancer, treatment, worry, lack of schedules, relaxed discipline and incredible pressure came to a head last night. Everyone is on edge.
Noah isn't getting the routine and structure a bipolar kid needs. Poor Tara isn't on a regular sleeping schedule and just wants to be a kid enjoying her summer (but who has an aggressive older brother). Michael is trying to hold us together, and deal with the intense pressures of work and home. And during these post-chemo weeks, I don't have the energy to do anything or help in any way.
This is one of those events that test a family. Luckily, we're strong and love each other an awful lot. I know we'll get through this, but it's not easy.
So needless to say, I had a terrible, restless sleep last night. I woke up a lot, had weird dreams and worried. It may be a blessing it's supposed to rain today because the weather will match my mood.
But let the sun come out tomorrow.
Tina
Monday, August 17, 2009
Grumpy
I feel a little grumpy this morning, even though I shouldn't. The side effects upon waking are better than I expected, so I should be happy. But maybe it's anticipation of what's to come. I know today and tomorrow are usually my worst days.
Last night, I had a moment of weakness and told Michael I wasn't sure I could get through these two days. But then I bucked up (because what else can I do), set my shoulders and said, "of course I can, I don't have a choice." But it's hard.
Maybe because of my weak confession last night, God is taking it easy on me this morning. I only have a skunky mouth and some minor leg pain, which started about 7 p.m. last night. I'm on top of it with Tylenol, so hopefully it won't get too bad. On Friday, Dr. P. asked if I wanted stronger medication for the leg pain, to which I replied no. I've gone from a person who took vitamins and a Tylenol every once in a while to popping pills all day. Argh! Besides, strong medication does nasty things to my body.
While the bone pain is one of the worst side effects, I'm waiting for the horrible pervading tiredness, depression and dread that I compared to slipping into a dark well the other day. I think I hate that one the worst because there's nothing I can do about it. There's no magic pain pill; only time.
But for now, I'm still okay. I managed to successfully drink a coffee this morning without a stomach revolt and I have plans with a book and my computer today. I may even nap or, now that my doc has approved it, lounge in the pool (but not alone because sometimes I feel weak).
Anything to get through the day.
Tina
Last night, I had a moment of weakness and told Michael I wasn't sure I could get through these two days. But then I bucked up (because what else can I do), set my shoulders and said, "of course I can, I don't have a choice." But it's hard.
Maybe because of my weak confession last night, God is taking it easy on me this morning. I only have a skunky mouth and some minor leg pain, which started about 7 p.m. last night. I'm on top of it with Tylenol, so hopefully it won't get too bad. On Friday, Dr. P. asked if I wanted stronger medication for the leg pain, to which I replied no. I've gone from a person who took vitamins and a Tylenol every once in a while to popping pills all day. Argh! Besides, strong medication does nasty things to my body.
While the bone pain is one of the worst side effects, I'm waiting for the horrible pervading tiredness, depression and dread that I compared to slipping into a dark well the other day. I think I hate that one the worst because there's nothing I can do about it. There's no magic pain pill; only time.
But for now, I'm still okay. I managed to successfully drink a coffee this morning without a stomach revolt and I have plans with a book and my computer today. I may even nap or, now that my doc has approved it, lounge in the pool (but not alone because sometimes I feel weak).
Anything to get through the day.
Tina
Sunday, August 16, 2009
The well, the party and the skunk
Yesterday started pretty well with me enjoying my coffee, newspaper and anti-nausea medication. The family hit some garage sales and stores, and had a bite to eat at Swiss Chalet while I was still feeling up to it. But by the afternoon I could feel myself starting to experience the post-chemo symptoms.
I compare it to sinking into a well. I decend into this narrow, dark space where I'm alone and semi-oblivious to everything and everyone around me. Luckily, I only swung my feet over the edge yesterday afternoon. It started with excessive emotions - think of it as really bad PMS.
First, I got easily irritated, especially by lots of noise, arguments and idol chit chat. Then the pendumlum swung to over-emotional crying jags for no particular reason. Oh yeah, I'm a site to behold. But after I experienced one of the crying episodes while drinking coffee at Williams' Coffee Pub yesterday, I told Michael it wasn't anything some sunglasses and lip gloss couldn't fix. He laughed.
Luckily, I attended Linda's birthday party in her lovely backyard yesterday evening with its opportunity to visit with some friends I hadn't seen in a while. That social activity slowed my well-sinking progress because I enjoyed myself and as a result, lasted far longer than I expected. But by 10:30 it was time to go, with my stomach starting to protest and my equilibrium a little off balance.
Yet the excitement for the night wasn't yet over. When we let our dog, Ginger, out to go pee, she discovered a skunk under our neighbour's trailer. Now luckily, she didn't get close enough for a full spray, but her curious nose got a squirt of the noxious skunk fumes. So at 11 p.m. last night, you'd have found Michael and I in our backyard pouring a concoction of baking soda and hydrogen peroxide on our dog's face and body, hosing her down and then drying her off. The smell of wet dog wasn't pleasant, but it certainly beat skunk dog.
By the time I went to bed, I was tired, but unable to fall asleep. My churning belly and every-half-hour hot flashes kept me from falling asleep and prevented my from returning to dreamland after I went to the bathroom at 4:30 a.m. So it's been an early start to the day. I have a feeling a nap may be just the ticket later today.
Luckily, I can still enjoy my coffee this morning because I only have a slight strange taste in my mouth. So it's a good day so far (of course, that's a little hard to judge at 6 a.m.).
Finding little things to celebrate and the occasional distraction may help me get through this fifth round of post-chemo symptoms. I'll do my best with the energy I have.
Hope you enjoy this hot and sunny Sunday.
Love
Tina
I compare it to sinking into a well. I decend into this narrow, dark space where I'm alone and semi-oblivious to everything and everyone around me. Luckily, I only swung my feet over the edge yesterday afternoon. It started with excessive emotions - think of it as really bad PMS.
First, I got easily irritated, especially by lots of noise, arguments and idol chit chat. Then the pendumlum swung to over-emotional crying jags for no particular reason. Oh yeah, I'm a site to behold. But after I experienced one of the crying episodes while drinking coffee at Williams' Coffee Pub yesterday, I told Michael it wasn't anything some sunglasses and lip gloss couldn't fix. He laughed.
Luckily, I attended Linda's birthday party in her lovely backyard yesterday evening with its opportunity to visit with some friends I hadn't seen in a while. That social activity slowed my well-sinking progress because I enjoyed myself and as a result, lasted far longer than I expected. But by 10:30 it was time to go, with my stomach starting to protest and my equilibrium a little off balance.
Yet the excitement for the night wasn't yet over. When we let our dog, Ginger, out to go pee, she discovered a skunk under our neighbour's trailer. Now luckily, she didn't get close enough for a full spray, but her curious nose got a squirt of the noxious skunk fumes. So at 11 p.m. last night, you'd have found Michael and I in our backyard pouring a concoction of baking soda and hydrogen peroxide on our dog's face and body, hosing her down and then drying her off. The smell of wet dog wasn't pleasant, but it certainly beat skunk dog.
By the time I went to bed, I was tired, but unable to fall asleep. My churning belly and every-half-hour hot flashes kept me from falling asleep and prevented my from returning to dreamland after I went to the bathroom at 4:30 a.m. So it's been an early start to the day. I have a feeling a nap may be just the ticket later today.
Luckily, I can still enjoy my coffee this morning because I only have a slight strange taste in my mouth. So it's a good day so far (of course, that's a little hard to judge at 6 a.m.).
Finding little things to celebrate and the occasional distraction may help me get through this fifth round of post-chemo symptoms. I'll do my best with the energy I have.
Hope you enjoy this hot and sunny Sunday.
Love
Tina
Saturday, August 15, 2009
Saturday morning follow up
Yesterday is done . . . and it went fairly well. Breakfast was delicious at Cora's. If you've never been, you've got to go. Lots of selection, great food and lots of fruit. It's pricey, but wow, do you get a lot of food. Angie, Michael and I went, and enjoyed it immensely.
The blood draw was painless and went off without a hitch. My blood levels were really good and I think Dr. P. was surprised. He asked about tingling in my hands and feet, which are a common side effect from chemotherapy and was pleased when I said I haven't experienced that. It doesn't mean it won't show up during these last two rounds, but it's looking good.
I asked about what activities I can do after. Michael and I are considering a small, celebratory vacation to reconnect and try to deal with the mental after effects of this disease and Dr. P. placed no restrictions on me. He said I could go in a plane, visit a tropical island, take any other preventative medication (Dukerol or anti-malaria medication), etc.
He also suprised me by saying I could go in a private pool or hot tub now (because the bacteria levels are controlled better) because I thought those were verboten.
He basically said, I can do anything a "normal" person could do. He treated me like I don't have cancer any more. I got the impression that once we're through these last two (now one) chemotherapy treatments, I'm a normal person and can do anything. That is a very good feeling.
But, he did bring up the clinical trial taking place at the London Regional Cancer Program for after treatment. It's for a drug called Sorafenib, which essentially cuts off the blood supply to any new tumours so they die. I met with the research coordinator who discussed this double-blind study (half the participants get the drug and half get a placebo) as well as the appointments and care I'd get if I participated in the study (ECGs, CT scans, physical exams and blood tests of check CA-125 levels).
In a way, I like the idea of being followed closely after my active treatment is done. Part of me says, "yes, please watch and make sure the cancer doesn't come back so we can treat it right away."
Dr. Prefontaine discussed the regular follow up care that takes place if I don't participate in a study. Usually, it's an appointment four to six weeks after my chemotherapy to ensure the treatment worked. The only test they would run is bloodwork to check my CA-125 level. The next appointment would be three months later and then six months after that. That's it. They don't do a CT scan or even continually check for CA-125 levels because it's not necessarily a true indicator the cancer is back.
He quoted a study recently completed in England where patients started receiving treatment with elevated CA-125 levels (two of more, I think) compared to those who were treated when cancer symptoms returned. The study showed no difference in survival rates between the two groups. Hunh.
But back to the Sorafeib study, I got an information package explaining the entire study and potential side effects, which are scary. There are lots, but some of the worst include:
- Bleeding, including bleeding from the bowel, lungs and airways and rarely into the brain (could be life-threatening or fatal) - in 10 per cent or more of the participants
- Renal failure - one to 10 per cent of participants
- Aching and painful muscles and joints; tingling or painful extremities - one to 10 per cent
- Inflammation of the stomach, pancreas or perforations of the bowel - less than one per cent
- Severe high blood pressure that may require hospitalization and may lead to confusion, changes in vision and seizures (may be fatal) - less than one per cent
- Chest pain, heart attack and congestive heart failure (may be life-threatening or fatal) - less than one per cent
- Increase risk of skin cancer - less than one per cent
Of course, they have to list all the potential side effects, I'd be watched carefully and I could discontinue the study at any time. But those are some pretty concerning side effects. So I have lots of questions.
I'm also looking into another study available to those with the BCRA gene dealing with PARP inhibitors. As I understand it, they basically replace the broken DNA gene to kill off the cancer cells as they're growing (because it recognizes they're not normal). I like the idea of that type of study because it catches the abnormal cells before they form into tumours instead of treating them afterwards.
There's an active PARP inhibitor study headquartered out of British Columbia right now, with a centre in Hamilton. But I have to get more information about the Sorafenib study (talk to the actual researcher) and question him about the PARP inhibitor trial. I'm sure the cancer research world is a pretty small one and he's know some details about it.
But first I have to find out if I have the BCRA-1 gene. Despite having blood drawn for the tests on May 13 and being told it will take four to six weeks for results, we don't have them yet. We've been told they've been delayed due to summer holidays, staff shortages, etc. but come on! I need to know. Mom and Angie need to know. Mom has appointments with specialists lined up with the impression she carries the gene. If Angie carries it she needs these same appointments, which can take months to secure.
I'm going to start bugging the Dr. A's office next week because I need to know if I quality for the PARP clinical trial and I've got to move quickly because my LAST treatment is on Sept. 4.
Oh, this treatment went okay. It took two needles sticks (and the first one was really painful because the vein collapsed) but the rest of the infusion was event free. Angie and I munched, watched a movie and talked. One more to go.
I'm feeling pretty good this morning. I had coffee and some yummy coffee cake. I've taken all my medications and vitamins. I can feel the skunky tastebuds trying to take over my mouth (earlier than usual again) and my stomach feels a bit queasy.
So far, so good. And one day at a time.
Have a great weekend and thank you all for your prayers and good wishes yesterday. (Rachael I loved the vision of you stomping cancer cells with your heels.) Everyone is awesome and I'm thankful for you all.
Tina
The blood draw was painless and went off without a hitch. My blood levels were really good and I think Dr. P. was surprised. He asked about tingling in my hands and feet, which are a common side effect from chemotherapy and was pleased when I said I haven't experienced that. It doesn't mean it won't show up during these last two rounds, but it's looking good.
I asked about what activities I can do after. Michael and I are considering a small, celebratory vacation to reconnect and try to deal with the mental after effects of this disease and Dr. P. placed no restrictions on me. He said I could go in a plane, visit a tropical island, take any other preventative medication (Dukerol or anti-malaria medication), etc.
He also suprised me by saying I could go in a private pool or hot tub now (because the bacteria levels are controlled better) because I thought those were verboten.
He basically said, I can do anything a "normal" person could do. He treated me like I don't have cancer any more. I got the impression that once we're through these last two (now one) chemotherapy treatments, I'm a normal person and can do anything. That is a very good feeling.
But, he did bring up the clinical trial taking place at the London Regional Cancer Program for after treatment. It's for a drug called Sorafenib, which essentially cuts off the blood supply to any new tumours so they die. I met with the research coordinator who discussed this double-blind study (half the participants get the drug and half get a placebo) as well as the appointments and care I'd get if I participated in the study (ECGs, CT scans, physical exams and blood tests of check CA-125 levels).
In a way, I like the idea of being followed closely after my active treatment is done. Part of me says, "yes, please watch and make sure the cancer doesn't come back so we can treat it right away."
Dr. Prefontaine discussed the regular follow up care that takes place if I don't participate in a study. Usually, it's an appointment four to six weeks after my chemotherapy to ensure the treatment worked. The only test they would run is bloodwork to check my CA-125 level. The next appointment would be three months later and then six months after that. That's it. They don't do a CT scan or even continually check for CA-125 levels because it's not necessarily a true indicator the cancer is back.
He quoted a study recently completed in England where patients started receiving treatment with elevated CA-125 levels (two of more, I think) compared to those who were treated when cancer symptoms returned. The study showed no difference in survival rates between the two groups. Hunh.
But back to the Sorafeib study, I got an information package explaining the entire study and potential side effects, which are scary. There are lots, but some of the worst include:
- Bleeding, including bleeding from the bowel, lungs and airways and rarely into the brain (could be life-threatening or fatal) - in 10 per cent or more of the participants
- Renal failure - one to 10 per cent of participants
- Aching and painful muscles and joints; tingling or painful extremities - one to 10 per cent
- Inflammation of the stomach, pancreas or perforations of the bowel - less than one per cent
- Severe high blood pressure that may require hospitalization and may lead to confusion, changes in vision and seizures (may be fatal) - less than one per cent
- Chest pain, heart attack and congestive heart failure (may be life-threatening or fatal) - less than one per cent
- Increase risk of skin cancer - less than one per cent
Of course, they have to list all the potential side effects, I'd be watched carefully and I could discontinue the study at any time. But those are some pretty concerning side effects. So I have lots of questions.
I'm also looking into another study available to those with the BCRA gene dealing with PARP inhibitors. As I understand it, they basically replace the broken DNA gene to kill off the cancer cells as they're growing (because it recognizes they're not normal). I like the idea of that type of study because it catches the abnormal cells before they form into tumours instead of treating them afterwards.
There's an active PARP inhibitor study headquartered out of British Columbia right now, with a centre in Hamilton. But I have to get more information about the Sorafenib study (talk to the actual researcher) and question him about the PARP inhibitor trial. I'm sure the cancer research world is a pretty small one and he's know some details about it.
But first I have to find out if I have the BCRA-1 gene. Despite having blood drawn for the tests on May 13 and being told it will take four to six weeks for results, we don't have them yet. We've been told they've been delayed due to summer holidays, staff shortages, etc. but come on! I need to know. Mom and Angie need to know. Mom has appointments with specialists lined up with the impression she carries the gene. If Angie carries it she needs these same appointments, which can take months to secure.
I'm going to start bugging the Dr. A's office next week because I need to know if I quality for the PARP clinical trial and I've got to move quickly because my LAST treatment is on Sept. 4.
Oh, this treatment went okay. It took two needles sticks (and the first one was really painful because the vein collapsed) but the rest of the infusion was event free. Angie and I munched, watched a movie and talked. One more to go.
I'm feeling pretty good this morning. I had coffee and some yummy coffee cake. I've taken all my medications and vitamins. I can feel the skunky tastebuds trying to take over my mouth (earlier than usual again) and my stomach feels a bit queasy.
So far, so good. And one day at a time.
Have a great weekend and thank you all for your prayers and good wishes yesterday. (Rachael I loved the vision of you stomping cancer cells with your heels.) Everyone is awesome and I'm thankful for you all.
Tina
Thursday, August 13, 2009
Say a little prayer for me
It's chemo day. I'm trying to be positive so everything will go smoothly. I want the first needle to work and the second-last chemotherapy treatment to start.
Last time, the nurse told me drinking caffeine constricted my veins so I'm switching to decaf at breakfast this morning. (I don't know how much stock I put in that though because I drank coffee before all four of my previous treatments and for two of them, the nurse got the needle in the first time.) But I'm not taking any chances and doing everything I can to increase the odds the first needle will go in without any trouble.
Michael, Angie and I are heading out for a yummy breakfast at Cora's. We may as well treat ourselves well first. Then I have bloodwork at 8:45 a.m., the appointment with Dr. P. at 9:45 and then chemo is scheduled for 10:45.
Of course, that means I won't get out of the cancer clinic until almost 5 p.m. tonight. But it'll be done, with only one more to go.
I'll also talk with Dr. P. today about what kinds of tests to expect after my last chemo, and discuss follow up care and clinical trial options. I want to know what to anticipate.
I'd appreciate it if you could say a little prayer for me around 10:45 today (probably closer to 11 a.m.) that chemo will go well today. It can't hurt.
Tina
P.S. Thanks for all the wonderful food sent yesterday. The Bratscher family certainly won't starve as I recover - and for that, I'm grateful.
Last time, the nurse told me drinking caffeine constricted my veins so I'm switching to decaf at breakfast this morning. (I don't know how much stock I put in that though because I drank coffee before all four of my previous treatments and for two of them, the nurse got the needle in the first time.) But I'm not taking any chances and doing everything I can to increase the odds the first needle will go in without any trouble.
Michael, Angie and I are heading out for a yummy breakfast at Cora's. We may as well treat ourselves well first. Then I have bloodwork at 8:45 a.m., the appointment with Dr. P. at 9:45 and then chemo is scheduled for 10:45.
Of course, that means I won't get out of the cancer clinic until almost 5 p.m. tonight. But it'll be done, with only one more to go.
I'll also talk with Dr. P. today about what kinds of tests to expect after my last chemo, and discuss follow up care and clinical trial options. I want to know what to anticipate.
I'd appreciate it if you could say a little prayer for me around 10:45 today (probably closer to 11 a.m.) that chemo will go well today. It can't hurt.
Tina
P.S. Thanks for all the wonderful food sent yesterday. The Bratscher family certainly won't starve as I recover - and for that, I'm grateful.
Anticipation
It's the day before chemo and I can feel the anxiety building in me. From the moment I opened my eyes this morning, my racing mind started through the list of activities I'd like to complete today.
I feel the need to accomplish them all because it's my last day of freedom. This isn't technically true because I usually don't feel terrible until Sunday or Monday. But the voice in the back of my head says, "you never know how you'll respond to this round of chemo."
Of course, Michael would also willingly do some of these tasks, but my A-type personality drives me to do as much as possible.
So I have a list:
1. Make sure the kids have some fun activities planned while I'm recovering. My mother-in-law has tickets to take them to see Walking with the Dinosaurs on Saturday night, which will be thrilling. Michael's also talked about a movie on Sunday. And I've lined up care for early next week during the worst of my days.
2. Go to the library. My kids are participating in the summer reading program and need to submit their completed book reports to receive their prizes. Besides, it keeps them reading during the summer. While we're there, we'll pick up some movies and books to keep us all busy during the next week. You gotta love the library!
3. Complete Tara's birthday party invitations so Michael can deliver them on the weekend. Tara turns 8 next Friday and every little girl needs a birthday party with her friends (and family).
4. Ensure I have all the groceries I need for tomorrow and the coming week. One of the things that makes chemo more tolerable is Angie and I always eat yummy food. Since the actual infusion doesn't cause nausea, we pleasantly munch our way through the mind-numbing six hours.
We're going for a big breakfast at Cora's before heading to the hospital, so we've decided on a nice light lunch of sushi, which I'll pick up tonight. Angie always brings something tasty (this time it's dark chocolate covered almonds).
I'll also make sure there's some quick and easy meals for Michael to make during the coming week, when food is less of a priority for me.
I think Jodi is also delivering food from my friends at London Life this afternoon. I'm so very thankful to everyone who has provided meals because it makes Michael's life easier. It's not that Michael can't cook. It's that he has very little time to do so between work, the kids and the house/yard. So we're very appreciative.
5. Take my anti-nausea medication. This simple action affirms I get chemo tomorrow. I have to take my five little pills 12 hours before treatment and then five more six hours before (yup, in the middle of the night).
I get more anxious each treatment. I don't know if it's because the side-effects are getting worse, I'm tired of being a pin cushion or I'm growing weary of the whole process. Regardless of my feelings, it has to be done. So another task for today is to mentally prepare so I'm strong for treatment.
6. I will probably also make banana bread with Tara. She loves baking, the whole family loves eating this yummy treat and I have three very ripe bananas that need to be used up.
My list isn't that long, but it'll keep me busy - and that's okay. I like having days where I can be productive, especially since I know those unproductive, recovery days are right around the corner.
I hope you feel productive today too. Remember to count and celebrate the simple and personal accomplishments too. They all count.
Enjoy your day,
Tina
I feel the need to accomplish them all because it's my last day of freedom. This isn't technically true because I usually don't feel terrible until Sunday or Monday. But the voice in the back of my head says, "you never know how you'll respond to this round of chemo."
Of course, Michael would also willingly do some of these tasks, but my A-type personality drives me to do as much as possible.
So I have a list:
1. Make sure the kids have some fun activities planned while I'm recovering. My mother-in-law has tickets to take them to see Walking with the Dinosaurs on Saturday night, which will be thrilling. Michael's also talked about a movie on Sunday. And I've lined up care for early next week during the worst of my days.
2. Go to the library. My kids are participating in the summer reading program and need to submit their completed book reports to receive their prizes. Besides, it keeps them reading during the summer. While we're there, we'll pick up some movies and books to keep us all busy during the next week. You gotta love the library!
3. Complete Tara's birthday party invitations so Michael can deliver them on the weekend. Tara turns 8 next Friday and every little girl needs a birthday party with her friends (and family).
4. Ensure I have all the groceries I need for tomorrow and the coming week. One of the things that makes chemo more tolerable is Angie and I always eat yummy food. Since the actual infusion doesn't cause nausea, we pleasantly munch our way through the mind-numbing six hours.
We're going for a big breakfast at Cora's before heading to the hospital, so we've decided on a nice light lunch of sushi, which I'll pick up tonight. Angie always brings something tasty (this time it's dark chocolate covered almonds).
I'll also make sure there's some quick and easy meals for Michael to make during the coming week, when food is less of a priority for me.
I think Jodi is also delivering food from my friends at London Life this afternoon. I'm so very thankful to everyone who has provided meals because it makes Michael's life easier. It's not that Michael can't cook. It's that he has very little time to do so between work, the kids and the house/yard. So we're very appreciative.
5. Take my anti-nausea medication. This simple action affirms I get chemo tomorrow. I have to take my five little pills 12 hours before treatment and then five more six hours before (yup, in the middle of the night).
I get more anxious each treatment. I don't know if it's because the side-effects are getting worse, I'm tired of being a pin cushion or I'm growing weary of the whole process. Regardless of my feelings, it has to be done. So another task for today is to mentally prepare so I'm strong for treatment.
6. I will probably also make banana bread with Tara. She loves baking, the whole family loves eating this yummy treat and I have three very ripe bananas that need to be used up.
My list isn't that long, but it'll keep me busy - and that's okay. I like having days where I can be productive, especially since I know those unproductive, recovery days are right around the corner.
I hope you feel productive today too. Remember to count and celebrate the simple and personal accomplishments too. They all count.
Enjoy your day,
Tina
Wednesday, August 12, 2009
Goodbye yesterday
Your eyes didn't deceive you and nothing was wrong with your computer. I didn't blog yesterday. I didn't feel I had anything new or interesting to say. But a couple of people questioned me in incredulous voices, "you didn't blog today?" In response to my "no," I got stunned silence.
So I'm back writing today.
I didn't feel quite right yesterday. As the day wore on, the feeling of general yuckiness (yes, that's the medical term) intensified. I didn't sleep well the night before.
First, I didn't fall asleep quickly when I went to bed. Then the 2:30 a.m. torrential rain had me scrambling to close the affected windows. When the rain let up, Michael and I reopened the windows to try to catch a breeze. Then we repeated the closing and opening process when the rain returned.
Our air conditioning is on the fritz. It worked for a short while on Monday so I was able to enjoy the blessed coolness. But I think it froze up and conked out Monday night. So we've been making due with whatever breeze we can catch from the windows and lots of fans.
While Michael went back to sleep after our window exercise, I laid awake until about 4:30 a.m. I contemplated just getting up and writing off the night. I'm glad I didn't because I eventually fell asleep again. But I was tired yesterday and my stomach was upset. I may still be fighting a cold.
The humidity and the rain (and the need to open and close the windows) probably contributed to my poor sleep - and grumpy mood yesterday.
I'm angry because this isn't how the last few days of good health before chemo are supposed to be. I'm supposed to be able to enjoy them so my willpower is strong for the six hour infusion and the dreaded week after.
To top it off, Michael injured himself at work yesterday. He sustained a gash across his shin, bled all over the loading dock and then spent three hours in urgent care at St. Joe's (good thing he works there). He required five stitches! Then, because the department is short staffed due to vacations, no one could fill in for him and the work piled up. He stayed late last night. Poor guy couldn't even go home when he hurt himself.
I hope today is an all-round better day. I got a good sleep last night (but weird dreams) so I think I feel okay. I will do something with my kids so they don't spend the whole day with electronics, which drives me crazy. But I often don't have the energy to fight with them about it. Michael is going to have an uneventful day at work. And I have a dinner guest coming tonight and I'm sure I'll enjoy her company - and perhaps a few glasses of wine.
So all in all, I'm planning on it being a better day. I have to repeat my mantra to myself - one day at a time - and live by it. Yesterday is done and I have to make the most of today.
It's all any of us can do.
Tina
So I'm back writing today.
I didn't feel quite right yesterday. As the day wore on, the feeling of general yuckiness (yes, that's the medical term) intensified. I didn't sleep well the night before.
First, I didn't fall asleep quickly when I went to bed. Then the 2:30 a.m. torrential rain had me scrambling to close the affected windows. When the rain let up, Michael and I reopened the windows to try to catch a breeze. Then we repeated the closing and opening process when the rain returned.
Our air conditioning is on the fritz. It worked for a short while on Monday so I was able to enjoy the blessed coolness. But I think it froze up and conked out Monday night. So we've been making due with whatever breeze we can catch from the windows and lots of fans.
While Michael went back to sleep after our window exercise, I laid awake until about 4:30 a.m. I contemplated just getting up and writing off the night. I'm glad I didn't because I eventually fell asleep again. But I was tired yesterday and my stomach was upset. I may still be fighting a cold.
The humidity and the rain (and the need to open and close the windows) probably contributed to my poor sleep - and grumpy mood yesterday.
I'm angry because this isn't how the last few days of good health before chemo are supposed to be. I'm supposed to be able to enjoy them so my willpower is strong for the six hour infusion and the dreaded week after.
To top it off, Michael injured himself at work yesterday. He sustained a gash across his shin, bled all over the loading dock and then spent three hours in urgent care at St. Joe's (good thing he works there). He required five stitches! Then, because the department is short staffed due to vacations, no one could fill in for him and the work piled up. He stayed late last night. Poor guy couldn't even go home when he hurt himself.
I hope today is an all-round better day. I got a good sleep last night (but weird dreams) so I think I feel okay. I will do something with my kids so they don't spend the whole day with electronics, which drives me crazy. But I often don't have the energy to fight with them about it. Michael is going to have an uneventful day at work. And I have a dinner guest coming tonight and I'm sure I'll enjoy her company - and perhaps a few glasses of wine.
So all in all, I'm planning on it being a better day. I have to repeat my mantra to myself - one day at a time - and live by it. Yesterday is done and I have to make the most of today.
It's all any of us can do.
Tina
Monday, August 10, 2009
Cell counts
I have chemo this Friday and although I want to enjoy these four days before treatment, my mind is already preparing. I pray my cell levels are high enough, especially my white blood cells, because I don't want to postpone the treatment for a couple of reasons.
1. I want to get my treatments over and done with so I can move on to recovery and getting back to a more normal life. And honestly, I want all the stupid side effects of chemo to be behind me.
2. My daughter's 8th birthday is the following Friday. If my treatment gets delayed by a week, I'll be in the cancer centre on her birthday. That would suck.
3. With an 8th birthday, comes a party. We're planning (right now it's only in our heads because of the uncertainty) for her friends to come over on the Saturday for a party. She's requested a pool party, but I've questioned its logic. So I've researched movie, bowling and other types of parties where someone else entertains and cleans up. Then we'll have a small family party with grandparents, aunts and uncles on the Sunday.
4. Michael requested vacation for Sept. 4 so he could be with me during my last chemo treatment. If my schedule gets screwed up, so will his vacation.
I'm anxious about my levels because my white blood cell count has been steadily dropping with each treatment, which is normal. But if it gets too low, I'll have to postpone. If my red blood cell count gets too low, I'll get a blood transfusion, like I did in the hospital.
Oh, the complications of the toxic chemotherapy chemicals. They also make my heart race much higher than normal. My homecare nurse assured me this is normal because my body realizes the chemo is a poison and is trying to get rid of it. I also learned when I had an ECG before surgery, chemotherapy can permanently damage my heart.
So there are lots of potential long-term side effects from the medicine used to fight the deadly cancer. Hopefully, my good health and age, will lessen their effects.
But I am thankful researchers have come a long way from early cancer treatment. I know I have it far better than many before me. And I know those in my kids' generation will have it far better than today. We can only hope cancer will be irradicated by the time they grow up.
Here's praying for an end to cancer - and (a little more immediate) for my blood cell counts to be high enough for treatment on Friday.
Tina
1. I want to get my treatments over and done with so I can move on to recovery and getting back to a more normal life. And honestly, I want all the stupid side effects of chemo to be behind me.
2. My daughter's 8th birthday is the following Friday. If my treatment gets delayed by a week, I'll be in the cancer centre on her birthday. That would suck.
3. With an 8th birthday, comes a party. We're planning (right now it's only in our heads because of the uncertainty) for her friends to come over on the Saturday for a party. She's requested a pool party, but I've questioned its logic. So I've researched movie, bowling and other types of parties where someone else entertains and cleans up. Then we'll have a small family party with grandparents, aunts and uncles on the Sunday.
4. Michael requested vacation for Sept. 4 so he could be with me during my last chemo treatment. If my schedule gets screwed up, so will his vacation.
I'm anxious about my levels because my white blood cell count has been steadily dropping with each treatment, which is normal. But if it gets too low, I'll have to postpone. If my red blood cell count gets too low, I'll get a blood transfusion, like I did in the hospital.
Oh, the complications of the toxic chemotherapy chemicals. They also make my heart race much higher than normal. My homecare nurse assured me this is normal because my body realizes the chemo is a poison and is trying to get rid of it. I also learned when I had an ECG before surgery, chemotherapy can permanently damage my heart.
So there are lots of potential long-term side effects from the medicine used to fight the deadly cancer. Hopefully, my good health and age, will lessen their effects.
But I am thankful researchers have come a long way from early cancer treatment. I know I have it far better than many before me. And I know those in my kids' generation will have it far better than today. We can only hope cancer will be irradicated by the time they grow up.
Here's praying for an end to cancer - and (a little more immediate) for my blood cell counts to be high enough for treatment on Friday.
Tina
Sunday, August 9, 2009
Mental
"Our life is the creation of our mind." Buddha
If cancer can be beaten only by attitude, I've already won the fight. In my mind, I'm already cancer free and I'm only going through the remaining chemo treatments to be sure.
This unexplained shift in attitude happened over the past week - and I only recognized it yesterday. A couple of weeks ago, I wrote about my reluctance to celebrate the good prognosis along with everyone else, and expressed fear about my own mortality.
Don't get me wrong, I'm very afraid the cancer will come back. Even though I don't have ovaries, the cancer could make its home in one of my other abdominal organs, lymph nodes or even my lungs. It takes five years of being cancer free before a person is considered cured, with the same risks of contracting it as the general population.
But for now, I feel very optimistic about beating ovarian cancer. If thoughts can truly create reality and I can create my future, I've already won.
My mind is starting to accept I can plan life in the future - beyond the treatment. I still think "if and when" when making plans, but now the uncertain time is further in the future than this fall or even next year.
That's how I feel today. But as I've learned during this journey, my emotions go up and down like a yo yo. Maybe I feel so optimistic and strong because I'm in the feel good segment of my chemo treatment. But then again, maybe I've just made up my mind that I've beaten this dreadful disease.
As Abraham Lincoln once said, "Always bear in mind that your own resolution to succeed is more important than any other one thing."
If my mind gets its way, I'll be here for many, many more years to come.
Tina
If cancer can be beaten only by attitude, I've already won the fight. In my mind, I'm already cancer free and I'm only going through the remaining chemo treatments to be sure.
This unexplained shift in attitude happened over the past week - and I only recognized it yesterday. A couple of weeks ago, I wrote about my reluctance to celebrate the good prognosis along with everyone else, and expressed fear about my own mortality.
Don't get me wrong, I'm very afraid the cancer will come back. Even though I don't have ovaries, the cancer could make its home in one of my other abdominal organs, lymph nodes or even my lungs. It takes five years of being cancer free before a person is considered cured, with the same risks of contracting it as the general population.
But for now, I feel very optimistic about beating ovarian cancer. If thoughts can truly create reality and I can create my future, I've already won.
My mind is starting to accept I can plan life in the future - beyond the treatment. I still think "if and when" when making plans, but now the uncertain time is further in the future than this fall or even next year.
That's how I feel today. But as I've learned during this journey, my emotions go up and down like a yo yo. Maybe I feel so optimistic and strong because I'm in the feel good segment of my chemo treatment. But then again, maybe I've just made up my mind that I've beaten this dreadful disease.
As Abraham Lincoln once said, "Always bear in mind that your own resolution to succeed is more important than any other one thing."
If my mind gets its way, I'll be here for many, many more years to come.
Tina
Saturday, August 8, 2009
100
It's a milestone that's usually cause for recognition. Kids celebrate the 100th day of school. Networks excitedly proclaim when a television program airs its 100th episode. Today we celebrate my 100th blog.
I was skeptical when I started this newfangled mode of communication (okay, new to me) at the suggestion of my friend, Drew. But I have to admit, blogging is easier than continuously updating an email distribution list to share my cancer news. It can also easily be shared with others who are interested. I'm honoured and surprised by the number of people who follow my blog daily.
When I started, I figured I'd blog every once in a while, when I had news. In the beginning, the arrival of the information was fast and furious, so I had plenty to talk about. But then I began to use this venue as a way to share emotions, teach, thank and vent. So it's no wonder I've reached number 100.
I didn't realize I was such a blabbermouth (okay, some of you may have known that) or that I'd be so willing to share the down-and-dirty emotions and experiences of dealing with cancer. I learned something about myself.
When Michael told me yesterday, today would be my 100th blog, I contemplated its topic. At first, I envisioned creating a list of 100 things for which I'm thankful. But then realized how tedious that could be to read.
Suffice to say, I'm thankful I'm still here, living each day. I'm thankful to God for giving me strength to fight this battle (and give thanks in anticipation of winning it). And I'm thankful to have a village of my family and friends supporting and praying for me. Wow, I'm one lucky woman.
Celebrate 100 with me by thinking of something you're thankful for today.
We've travelled an amazing and winding journey together so far and we still have some distance to go before we're done. But it's been one heck of a trip. Thanks for accompanying me on this life-changing journey.
Tina
I was skeptical when I started this newfangled mode of communication (okay, new to me) at the suggestion of my friend, Drew. But I have to admit, blogging is easier than continuously updating an email distribution list to share my cancer news. It can also easily be shared with others who are interested. I'm honoured and surprised by the number of people who follow my blog daily.
When I started, I figured I'd blog every once in a while, when I had news. In the beginning, the arrival of the information was fast and furious, so I had plenty to talk about. But then I began to use this venue as a way to share emotions, teach, thank and vent. So it's no wonder I've reached number 100.
I didn't realize I was such a blabbermouth (okay, some of you may have known that) or that I'd be so willing to share the down-and-dirty emotions and experiences of dealing with cancer. I learned something about myself.
When Michael told me yesterday, today would be my 100th blog, I contemplated its topic. At first, I envisioned creating a list of 100 things for which I'm thankful. But then realized how tedious that could be to read.
Suffice to say, I'm thankful I'm still here, living each day. I'm thankful to God for giving me strength to fight this battle (and give thanks in anticipation of winning it). And I'm thankful to have a village of my family and friends supporting and praying for me. Wow, I'm one lucky woman.
Celebrate 100 with me by thinking of something you're thankful for today.
We've travelled an amazing and winding journey together so far and we still have some distance to go before we're done. But it's been one heck of a trip. Thanks for accompanying me on this life-changing journey.
Tina
Friday, August 7, 2009
An advantage?
Chunky
Plump
Carrying a few extra pounds
Pudgy
Stocky
I could use any one of these polite-sounding adjectives to describe my stature. My weight has always been my nemesis. Who knew it would be a weapon in my arsenal in my fight against ovarian cancer.
My home-care nurse told me yesterday, those with excess weight tend to be more successful withstanding the treatments. It's the skinny folks who tend to falter because, if they lose any weight, they lack the strength to fight. Cancer can cause weight loss and it certainly depletes strength.
I get the impression from all the health care professions involved in my treatment, that I'm withstanding the onslaught from the surgery and chemo quite well - despite my complaints.
I'm sure my (previous) fitness level, overall strength, attitude and age also contribute my success. I'm not sure if fatness was the only plus on my side, I'd be handling the treatments quite as well.
But this is the first time being overweight has its advantages.
Your plump - but strong - friend,
Tina
Plump
Carrying a few extra pounds
Pudgy
Stocky
I could use any one of these polite-sounding adjectives to describe my stature. My weight has always been my nemesis. Who knew it would be a weapon in my arsenal in my fight against ovarian cancer.
My home-care nurse told me yesterday, those with excess weight tend to be more successful withstanding the treatments. It's the skinny folks who tend to falter because, if they lose any weight, they lack the strength to fight. Cancer can cause weight loss and it certainly depletes strength.
I get the impression from all the health care professions involved in my treatment, that I'm withstanding the onslaught from the surgery and chemo quite well - despite my complaints.
I'm sure my (previous) fitness level, overall strength, attitude and age also contribute my success. I'm not sure if fatness was the only plus on my side, I'd be handling the treatments quite as well.
But this is the first time being overweight has its advantages.
Your plump - but strong - friend,
Tina
Thursday, August 6, 2009
The cycles
I am so angry. I just lost my entire blog as I was finishing my edits. I'm so frustrated because I've lost an hour's work. Grrrr! I'll try to recreate what I wrote . . .
____________________________________________________
Writing this blog helps me in many ways. It's made me identify and put my feelings into words so I can share them with others. I've also learned more about my disease when I've done the research into medical terminology and testing protocols to write about them.
The comments and emails this blog generates helps me realize I'm not alone in my struggle. My village thinks about me every day and prays I'll be okay. Your encouragement and thoughts bring me great strength.
As I review the posts, I can identify the cycles I go through with each round of treatment. They help me more clearly remember and prepare for the side effects, and identify different reactions (better or worse).
I was warned the side effects from chemotherpy are cumulative and get successively worse with each treatment. My blogs and personal notes demonstrate which of my reactions are growing in severity.
For example, the bone pain is no longer isolated to my legs, feet and ribs, but made its way up to my arms during the last treatment. The stomach upset/heartburn lasted longer too.
But while the metallic taste made an appearance a bit earlier this last time, it shuffled on its merry way more quickly.
The worst side effect - the mind-numbing, energy-sapping, fog-inducing depression - is definitely growing in serverity with each treatment. When I'm in this state, I notice my blogs reflect my black mood.
While I can't help this reaction nor do anything about it while I'm in it, reflecting on it almost two weeks later, when I'm cheerful and optimistic, helps me realize the depression doesn't last forever. Although I have to admit, when I'm in the middle of a chemo depression, it feels as though it's going to last forever.
About a week and a half post chemo, I mentally and physically feel great. I know the three weeks between treatments are designed to give my body a chance to recover and build up my blood cells, but the time also gives me a chance to mentally recover and then prepare for my next round.
Two treatments are left. I happy anticipate and yet anxiously dread the last two rounds of chemo. But in only six weeks, I'll be done and physically recovered from all the treatments. Yippee! Then I'll be on pins and needles waiting for the test results to identify if the surgery and six rounds of chemotherapy worked. Of course, I'll then need to work on the mental recovery my social worker warned me is coming.
There's hope and a light at the end of the tunnel. I may be a little worn down, both mentally and physically, but I plan to finish this fight with a couple of final knock-out punches.
Thanks for cheering me on from the sidelines.
Tina
____________________________________________________
Writing this blog helps me in many ways. It's made me identify and put my feelings into words so I can share them with others. I've also learned more about my disease when I've done the research into medical terminology and testing protocols to write about them.
The comments and emails this blog generates helps me realize I'm not alone in my struggle. My village thinks about me every day and prays I'll be okay. Your encouragement and thoughts bring me great strength.
As I review the posts, I can identify the cycles I go through with each round of treatment. They help me more clearly remember and prepare for the side effects, and identify different reactions (better or worse).
I was warned the side effects from chemotherpy are cumulative and get successively worse with each treatment. My blogs and personal notes demonstrate which of my reactions are growing in severity.
For example, the bone pain is no longer isolated to my legs, feet and ribs, but made its way up to my arms during the last treatment. The stomach upset/heartburn lasted longer too.
But while the metallic taste made an appearance a bit earlier this last time, it shuffled on its merry way more quickly.
The worst side effect - the mind-numbing, energy-sapping, fog-inducing depression - is definitely growing in serverity with each treatment. When I'm in this state, I notice my blogs reflect my black mood.
While I can't help this reaction nor do anything about it while I'm in it, reflecting on it almost two weeks later, when I'm cheerful and optimistic, helps me realize the depression doesn't last forever. Although I have to admit, when I'm in the middle of a chemo depression, it feels as though it's going to last forever.
About a week and a half post chemo, I mentally and physically feel great. I know the three weeks between treatments are designed to give my body a chance to recover and build up my blood cells, but the time also gives me a chance to mentally recover and then prepare for my next round.
Two treatments are left. I happy anticipate and yet anxiously dread the last two rounds of chemo. But in only six weeks, I'll be done and physically recovered from all the treatments. Yippee! Then I'll be on pins and needles waiting for the test results to identify if the surgery and six rounds of chemotherapy worked. Of course, I'll then need to work on the mental recovery my social worker warned me is coming.
There's hope and a light at the end of the tunnel. I may be a little worn down, both mentally and physically, but I plan to finish this fight with a couple of final knock-out punches.
Thanks for cheering me on from the sidelines.
Tina
Wednesday, August 5, 2009
Imagine the future
"When I retire . . ."
"On vacation next year, I'm visiting. . ."
"In our next house, I'd like a . . ."
"When the kids are gone . . ."
It's fun to imagine the future and make plans for our life in it. Everyone does it. I knew at the beginning of my working career that I'd could retire at the age of 65 in 2032.
With my cancer diagnosis, my perspective on future-planning statements shifted. I may not always verbalize it, but in my mind, I often add the word if. It's such a tiny word, but it carries enormous meaning.
If and when I retire, I'd like to move to Port Franks.
Then I could play at the "spa" all the time because my house would also be the spa. Of course, there's always great company in Port Franks.
If and when we take a vacation next year, I'd like to go to Australia.
Of course, health isn't the only factor to make this scenario reality, but it's now a big one for me. I'd love to experience so many destinations but the pesky roadblocks of insufficient funds and too little vacation time have often thrown cold water on those plans. But that's reality for most people I know.
If we move in my lifetime, in our next house, I'd like a garage.
During the last few months, I've wondered if my current home would be my last house. In the past, I used to peruse real estate ads seeking a new, better, different house. I've stopped since my diagnosis because in my mind, I couldn't plan for the future. I couldn't commit to something I didn't know if I could finish. It's still too big for me to contemplate. But perhaps, if and when I move to Port Franks, I'll get that garage.
If I'm still alive, when the kids are gone . . .
This is a huge worry of mine. I can't imagine not being alive to help raise my kids into the people they're going to be. If I'm still here when the kids move out, I'll be able to see some of the choices they've made for their careers, potential mates, life decisions, etc. I'd know that Michael and I taught them the foundations to live their lives and make their own choices.
If we do our jobs right, we raise our kids to leave us. I'd like to be able to finish doing that job.
Of course, then there's all that free time to enjoy without breaking up fights, handing out money, packing lunches, helping with homework, doing laundry, nagging, etc. I could spend more time with Michael doing activities we enjoy. I married him because he's my best friend and I LIKE his company. I'd go back to being Tina more often than Mom.
Before, it was easy to believe I was going to live a very, very long time. My grandpa Thomas died at age 90. He was as tall as he was wide, loved fatty foods and chewed tobacco. He bucked the odds. I take after the Thomas side of the family so, in my mind, I was going to be really old.
And the lifeline on my palm (not that I really believe in that stuff) is deep, straight and long; actually wrapping around to the other side of my hand.
I often imagined being old and what life could be like.
Don't get me wrong, all this introspection doesn't mean I won't be around for a long, long time, but it demonstrates how cancer changed my perspective. It shocked me into realizing, there are no guarantees, for any length of time in life.
It's still hard for me to make future plans with the little black cloud of cancer raining over my head. I've just now started making shorter-term plans: a celebratory getaway with Michael when treatments are over to reconnect, returning to work, activities for the kids in the falls, etc. I'm still having a little bit of trouble with long term. Maybe that will be easier when I'm declared cancer free.
But a little voice in the back of my head may always say, "for now." I may have to learn to live and plan with that little voice.
But I guess the lesson in all of this is, take advantage of today. Don't procrasinate important things, if you can do them now. Every day is a gift and we're responsible for filling it with activities and actions important to each of us.
Tina
"On vacation next year, I'm visiting. . ."
"In our next house, I'd like a . . ."
"When the kids are gone . . ."
It's fun to imagine the future and make plans for our life in it. Everyone does it. I knew at the beginning of my working career that I'd could retire at the age of 65 in 2032.
With my cancer diagnosis, my perspective on future-planning statements shifted. I may not always verbalize it, but in my mind, I often add the word if. It's such a tiny word, but it carries enormous meaning.
If and when I retire, I'd like to move to Port Franks.
Then I could play at the "spa" all the time because my house would also be the spa. Of course, there's always great company in Port Franks.
If and when we take a vacation next year, I'd like to go to Australia.
Of course, health isn't the only factor to make this scenario reality, but it's now a big one for me. I'd love to experience so many destinations but the pesky roadblocks of insufficient funds and too little vacation time have often thrown cold water on those plans. But that's reality for most people I know.
If we move in my lifetime, in our next house, I'd like a garage.
During the last few months, I've wondered if my current home would be my last house. In the past, I used to peruse real estate ads seeking a new, better, different house. I've stopped since my diagnosis because in my mind, I couldn't plan for the future. I couldn't commit to something I didn't know if I could finish. It's still too big for me to contemplate. But perhaps, if and when I move to Port Franks, I'll get that garage.
If I'm still alive, when the kids are gone . . .
This is a huge worry of mine. I can't imagine not being alive to help raise my kids into the people they're going to be. If I'm still here when the kids move out, I'll be able to see some of the choices they've made for their careers, potential mates, life decisions, etc. I'd know that Michael and I taught them the foundations to live their lives and make their own choices.
If we do our jobs right, we raise our kids to leave us. I'd like to be able to finish doing that job.
Of course, then there's all that free time to enjoy without breaking up fights, handing out money, packing lunches, helping with homework, doing laundry, nagging, etc. I could spend more time with Michael doing activities we enjoy. I married him because he's my best friend and I LIKE his company. I'd go back to being Tina more often than Mom.
Before, it was easy to believe I was going to live a very, very long time. My grandpa Thomas died at age 90. He was as tall as he was wide, loved fatty foods and chewed tobacco. He bucked the odds. I take after the Thomas side of the family so, in my mind, I was going to be really old.
And the lifeline on my palm (not that I really believe in that stuff) is deep, straight and long; actually wrapping around to the other side of my hand.
I often imagined being old and what life could be like.
Don't get me wrong, all this introspection doesn't mean I won't be around for a long, long time, but it demonstrates how cancer changed my perspective. It shocked me into realizing, there are no guarantees, for any length of time in life.
It's still hard for me to make future plans with the little black cloud of cancer raining over my head. I've just now started making shorter-term plans: a celebratory getaway with Michael when treatments are over to reconnect, returning to work, activities for the kids in the falls, etc. I'm still having a little bit of trouble with long term. Maybe that will be easier when I'm declared cancer free.
But a little voice in the back of my head may always say, "for now." I may have to learn to live and plan with that little voice.
But I guess the lesson in all of this is, take advantage of today. Don't procrasinate important things, if you can do them now. Every day is a gift and we're responsible for filling it with activities and actions important to each of us.
Tina
Tuesday, August 4, 2009
Chillaxin' at the spa
The wind rustles through the poplars and the Aridondack chairs beckon from the front porch. Everything is just a little bit slower at the "spa" in Port Franks. And I think that's exactly what I need for a couple of days of recuperation.
The whole Bratscher clan came out to enjoy Diane and Pete's hospitality on Sunday. But when Michael, Noah and Tara departed for London late yesterday afternoon, Ginger, our dog, and I joined the contingent waving them goodbye. Boy, that was a weird feeling.
While Diane and Pete work today, they've offered me the solitude and solace of their home. Talk about good friends! I'm going to do whatever moves me - read, write in my journal, listen to music, watch a movie, sit and watch the clouds go by, go for a walk, ride my bike, etc.
Speaking of my bike, I've cycled the last two days and love doing some exercise besides walking. The ride on Sunday was fairly small over the hilly Port Franks roads to sure my abdomen didn't protest too much. Yesterday, the ride was much longer and by the end my legs hurt a little bit. It was awesome! My legs hurt from something besides chemotherapy.
Biking is a way to ease back into exercise. My sore back muscles from working on Saturday reinforced how much my abs are shot, so I may as well try to keep my legs in shape.
But I'm going to sign off now because I can hear the Adirondack chair on front porch calling me to enjoy my coffee outside and watch the world go by.
Tina
The whole Bratscher clan came out to enjoy Diane and Pete's hospitality on Sunday. But when Michael, Noah and Tara departed for London late yesterday afternoon, Ginger, our dog, and I joined the contingent waving them goodbye. Boy, that was a weird feeling.
While Diane and Pete work today, they've offered me the solitude and solace of their home. Talk about good friends! I'm going to do whatever moves me - read, write in my journal, listen to music, watch a movie, sit and watch the clouds go by, go for a walk, ride my bike, etc.
Speaking of my bike, I've cycled the last two days and love doing some exercise besides walking. The ride on Sunday was fairly small over the hilly Port Franks roads to sure my abdomen didn't protest too much. Yesterday, the ride was much longer and by the end my legs hurt a little bit. It was awesome! My legs hurt from something besides chemotherapy.
Biking is a way to ease back into exercise. My sore back muscles from working on Saturday reinforced how much my abs are shot, so I may as well try to keep my legs in shape.
But I'm going to sign off now because I can hear the Adirondack chair on front porch calling me to enjoy my coffee outside and watch the world go by.
Tina
Sunday, August 2, 2009
Progress and patience
Oh, I was so silly yesterday. I felt good with my full-night's sleep and minimal, residual bone pain so I did too much - and paid for it last night.
If only I'd stopped after the garage sales and lunch at Ribfest. The entire family spent an enjoyable morning seeking bargains at garage sales. Unfortunately, the long weekend minimized their number, so we didn't have a lot of luck. But it was fun anyway.
Since we were out, Michael suggested hitting Victoria Park for lunch. Yum. While the kids dined on pogos and french fries (how unadventurous), Michael and I split the porky pig special for two consisting of ribs, pulled pork, barbecued chicken, beans and coleslaw. It was awesome, and our fingers and lips were coated with the sticky, smoky BBQ sauce.
Since, my energy prevailed when we got home, I tackled the music room, which was still full of misplaced stuff from the painting party. Poor Michael has been making due with a very small space in which to play his guitar. His music is his coping mechanism, his stress reliever, so it was critical we cleaned it first when I had enough energy.
Then I was encouraged by the clean music room and therefore kept working to reassemble the front hall. That thinking was the big mistake.
Of course, with both the music room and front hall, I couldn't just put the stuff back in the exact same spot. I sorted it and threw out a bunch of useless and old items. The tasks involved a lot of bending, which turned out to be my nemesis. Since I don't have strength in the abdominal muscles cut in the surgery, my upper abs (right under the ribs) and my entire back did all the work. As a result, I could barely move by dinner.
I'm still sore this morning, but it's a little better. Of course, now I need to rest, rest and rest it again.
Yesterday was a shining example of my lack of patience. I couldn't tackle the jobs in one-hour increments like a wise woman, but had to finish what I started. I liked the progress, but need to realize it hurts when I do too much.
Two steps forward, one step back. Argh.
I'm continuing to learn on this journey.
Tina
If only I'd stopped after the garage sales and lunch at Ribfest. The entire family spent an enjoyable morning seeking bargains at garage sales. Unfortunately, the long weekend minimized their number, so we didn't have a lot of luck. But it was fun anyway.
Since we were out, Michael suggested hitting Victoria Park for lunch. Yum. While the kids dined on pogos and french fries (how unadventurous), Michael and I split the porky pig special for two consisting of ribs, pulled pork, barbecued chicken, beans and coleslaw. It was awesome, and our fingers and lips were coated with the sticky, smoky BBQ sauce.
Since, my energy prevailed when we got home, I tackled the music room, which was still full of misplaced stuff from the painting party. Poor Michael has been making due with a very small space in which to play his guitar. His music is his coping mechanism, his stress reliever, so it was critical we cleaned it first when I had enough energy.
Then I was encouraged by the clean music room and therefore kept working to reassemble the front hall. That thinking was the big mistake.
Of course, with both the music room and front hall, I couldn't just put the stuff back in the exact same spot. I sorted it and threw out a bunch of useless and old items. The tasks involved a lot of bending, which turned out to be my nemesis. Since I don't have strength in the abdominal muscles cut in the surgery, my upper abs (right under the ribs) and my entire back did all the work. As a result, I could barely move by dinner.
I'm still sore this morning, but it's a little better. Of course, now I need to rest, rest and rest it again.
Yesterday was a shining example of my lack of patience. I couldn't tackle the jobs in one-hour increments like a wise woman, but had to finish what I started. I liked the progress, but need to realize it hurts when I do too much.
Two steps forward, one step back. Argh.
I'm continuing to learn on this journey.
Tina
Saturday, August 1, 2009
Glorious sleep
I didn't get up once to wander the halls, go to the bathroom or sigh in frustration! While it took a little while to go to sleep last night, once in dreamland, I stayed there until 7 a.m. It was awesome.
I finally (sheesh, it's been two days) got some more lorazepam yesterday and was able to take an entire pill to help me sleep. I lost the pieces of paper with my prescription and then had some communication issues with the cancer clinic before I could secure another one.
I wasn't even sure I had until I talked to the pharmacist at my Shoppers Drug Mart yesterday about alternatives and he informed me someone from the cancer clinic called my prescription in. I felt the relief shining in my eyes when the pharmacist delivered that good news.
Yes, it bothers me that I need drugs to sleep soundly. But without it, I toss and turn restlessly, and my mind won't slow down. Even when I go to sleep, I experience a myriad of restless dreams to hamper its restful abilities.
Yes, it's addictive. But when I asked my oncologist about it, he indicated that's the least of my worries right now. Yeah, I guess so.
It's amazing how a good night's sleep can make a big difference in perspective - and I'm sure in healing.
So for now, I'm thankful for my lorazepam and the recuperative sleep it brings.
Enjoy your Saturday.
Tina
I finally (sheesh, it's been two days) got some more lorazepam yesterday and was able to take an entire pill to help me sleep. I lost the pieces of paper with my prescription and then had some communication issues with the cancer clinic before I could secure another one.
I wasn't even sure I had until I talked to the pharmacist at my Shoppers Drug Mart yesterday about alternatives and he informed me someone from the cancer clinic called my prescription in. I felt the relief shining in my eyes when the pharmacist delivered that good news.
Yes, it bothers me that I need drugs to sleep soundly. But without it, I toss and turn restlessly, and my mind won't slow down. Even when I go to sleep, I experience a myriad of restless dreams to hamper its restful abilities.
Yes, it's addictive. But when I asked my oncologist about it, he indicated that's the least of my worries right now. Yeah, I guess so.
It's amazing how a good night's sleep can make a big difference in perspective - and I'm sure in healing.
So for now, I'm thankful for my lorazepam and the recuperative sleep it brings.
Enjoy your Saturday.
Tina
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