The shock my cancer may be back wore off over the weekend. The overwhelming, I-can-barely-concentrate grief dissipated on Thursday. It helps I have lots of work to do and the activities of my kids to draw my mind elsewhere, shifting my focus to normal life things.
That's not to say I'm not worried or I don't question every aspect of my body several times a day, but I'm existing in a bit of a holding pattern. For example, I sat outside this evening, enjoying the wonderfully warm weather wondering if my belly is expanding. I can't tell. But worrying does me no good because there's nothing I can do until June 28, so I may as well try to live life as normally as possible until then.
But it's hard. Most of the time my rising CA-125 seems surreal. The cancer can't possibly be coming back, I think to myself. But my mind is also preparing for the possibility of more treatment, whatever that may entail. As a result, it also nudges me toward a place where I envision getting sicker and sicker, and then dying of this stupid disease.
I try to remain positive, but when I have so little control, I sometimes think it doesn't matter what I want or do. It's like this wretched affliction has a mind of its own. Hopefully some medical breakthrough does what previous treatments have not - prevent the disease from coming back. I also regularly pray for a miracle. Little old me still talks to God, even though part of me is still angry with Him.
My fellow cancer survivor, Nancy, wrote a great blog about cancer and anger today. Check it out. She captures the sentiments perfectly.
I know I'm rambling a bit tonight, but that's how I feel. My thoughts are all over the place and I'm somewhat emotional. It's all part of the process - one I wish I wasn't experiencing - and my current reality.
My sister tells me to hope for the best and prepare for the worst. That's easier some days than others. Tonight it's not something I can do. I'll try again tomorrow.
Tina
Tuesday, May 31, 2011
Friday, May 27, 2011
Blissful ignorance
I almost wish I didn't know my CA-125 was rising. I kinda yearn for the blissful ignorance I was operating under, without the knowledge my cancer may be growing. I want to return to carrying on with my normal life. I was doing just fine, thank you very much.
Now I think about cancer many, many times a day, and what a reoccurence may mean to me, my family and my village. I fixate on every little twinge in my body. I even measured my abdomen yesterday so I'd be able to tell if the ascities was coming back. How sad is that? Instead of focusing on eating well and exercising to reduce the size of my oh-too-ample belly, I'm watching - and waiting - for it to grow. That's wrong.
On the bright side, a possible reoccurence has re-prioritized things in my life. As I predicted, I got sucked into the vortex of work. I'm working on a stressful, high-priority/short timeframe project and I was freaking out about it. Now I'm not. Don't get me wrong, I'm still working hard on it, but it's not my key priority any more. My life, family and friends have bumped work further down the list, where it belongs.
A good friend wisely reminded me on Wednesday that work will not be my legacy, and while responsibility is one of my character traits, I have to ensure I'm more responsible to me than to work. If I die (heck, even if I don't), no one is going to remember me for the awesome job I did on XYZ project.
It's sad it took my rising CA-125 for me to remember what is most important in life. I hope you take my illness as a wake up call if you're spending too much time on the things in your life that really don't matter in the long run. Remember to have fun, do things you enjoy, take time for yourself, and focus on the people in your life that are important. You owe it to yourself. Life life to its fullest.
Happy Friday.
Tina
Now I think about cancer many, many times a day, and what a reoccurence may mean to me, my family and my village. I fixate on every little twinge in my body. I even measured my abdomen yesterday so I'd be able to tell if the ascities was coming back. How sad is that? Instead of focusing on eating well and exercising to reduce the size of my oh-too-ample belly, I'm watching - and waiting - for it to grow. That's wrong.
On the bright side, a possible reoccurence has re-prioritized things in my life. As I predicted, I got sucked into the vortex of work. I'm working on a stressful, high-priority/short timeframe project and I was freaking out about it. Now I'm not. Don't get me wrong, I'm still working hard on it, but it's not my key priority any more. My life, family and friends have bumped work further down the list, where it belongs.
A good friend wisely reminded me on Wednesday that work will not be my legacy, and while responsibility is one of my character traits, I have to ensure I'm more responsible to me than to work. If I die (heck, even if I don't), no one is going to remember me for the awesome job I did on XYZ project.
It's sad it took my rising CA-125 for me to remember what is most important in life. I hope you take my illness as a wake up call if you're spending too much time on the things in your life that really don't matter in the long run. Remember to have fun, do things you enjoy, take time for yourself, and focus on the people in your life that are important. You owe it to yourself. Life life to its fullest.
Happy Friday.
Tina
Thursday, May 26, 2011
The other side of the microscope
I find it ironic that a report about phase II of the Olabparib study came out on Friday. As I learned the disappointing news my CA-125 is rising and my cancer may be making a reappearance, the researchers expressed excitement about the results of the Olaparib clinical trial.
You may ask, "What are they excited about?" My response is, "Why am I not reaping the benefits of the wonder drug?" Oh but according to the material published in the report, I am. Yup, I'm just as shocked as you.
As I swallowed the handfuls of big white capsules morning and night, I believed they would give me years more to be cancer free. I sweetly talked to the meds as I tossed them in my mouth, encouraging them to work their magic and kill the cancer. When I got the results of my last CT scan six weeks ago to learn the cancer had shrunk even more since I ended chemo, I praised God the Olaparib was doing its job.
According to the research findings, it did do the job. But I believed the results would be tougher, stronger, faster - and most importantly, last longer.
You see, the report optimistically reported Olaparib does work and improves outcomes in ovarian cancer.
"Results from a phase 2 trial have shown that it significantly prolonged progression-free survival in patients with platinum-sensitive relapsed serous ovarian cancer.
Patients who received olaparib as maintenance therapy achieved a progression-free survival that was nearly 4 months longer than those who received placebo, according to data presented at a press briefing held in advance of the American Society of Clinical Oncology (ASCO) 2011 Annual Meeting."
Significantly prolonged? Four months is significantly prolonged?! My reaction: These researchers haven't stood on the other side of the microscope. They don't understand the viewpoint of an ovarian cancer survivor and her family. Sure, four months longer is better than no months, but in the whole scheme of things, it's peanuts.
Success is determined by median time to progression. The olaparib group averaged 8.3 months and the placebo group (which I doesn't exist in my study) was 3.7 months. Considering I had my last chemo on Oct. 8, I am right around the 8 month mark. Of course that depends on what they determine as progression-free survival. Would two high CA-125 markers be deemed as reoccurence or would a CT scan confirming evidence of disease and growth be the determinant? My relapse time would depend on the criteria.
In the end, I'm disappointed and pissed at the results of the study. I'm not encouraged by it like the researchers. This is NOT success in my books. I want something that will work long term so I can live life in remission for years, not months. I keep hearing ovarian cancer is a chronic disease that can be managed, like diabetes. This is not good management. I want better!
Tina
You may ask, "What are they excited about?" My response is, "Why am I not reaping the benefits of the wonder drug?" Oh but according to the material published in the report, I am. Yup, I'm just as shocked as you.
As I swallowed the handfuls of big white capsules morning and night, I believed they would give me years more to be cancer free. I sweetly talked to the meds as I tossed them in my mouth, encouraging them to work their magic and kill the cancer. When I got the results of my last CT scan six weeks ago to learn the cancer had shrunk even more since I ended chemo, I praised God the Olaparib was doing its job.
According to the research findings, it did do the job. But I believed the results would be tougher, stronger, faster - and most importantly, last longer.
You see, the report optimistically reported Olaparib does work and improves outcomes in ovarian cancer.
"Results from a phase 2 trial have shown that it significantly prolonged progression-free survival in patients with platinum-sensitive relapsed serous ovarian cancer.
Patients who received olaparib as maintenance therapy achieved a progression-free survival that was nearly 4 months longer than those who received placebo, according to data presented at a press briefing held in advance of the American Society of Clinical Oncology (ASCO) 2011 Annual Meeting."
Significantly prolonged? Four months is significantly prolonged?! My reaction: These researchers haven't stood on the other side of the microscope. They don't understand the viewpoint of an ovarian cancer survivor and her family. Sure, four months longer is better than no months, but in the whole scheme of things, it's peanuts.
Success is determined by median time to progression. The olaparib group averaged 8.3 months and the placebo group (which I doesn't exist in my study) was 3.7 months. Considering I had my last chemo on Oct. 8, I am right around the 8 month mark. Of course that depends on what they determine as progression-free survival. Would two high CA-125 markers be deemed as reoccurence or would a CT scan confirming evidence of disease and growth be the determinant? My relapse time would depend on the criteria.
In the end, I'm disappointed and pissed at the results of the study. I'm not encouraged by it like the researchers. This is NOT success in my books. I want something that will work long term so I can live life in remission for years, not months. I keep hearing ovarian cancer is a chronic disease that can be managed, like diabetes. This is not good management. I want better!
Tina
Wednesday, May 25, 2011
Emotional update
When I call on my village for support, they practically trip over each other to send emails, provide hugs or lend sympathetic ears. I'm a lucky woman.
As you can imagine, Michael and I had a rough day. We're still in shock (and maybe even in a bit of denial). We're so very, very sad. If sadness could ooze out of our pores, we'd be covered in it. And we're angry. I am so angry I could throw a good old-fashioned temper tantrum complete with screaming and kicking. I'm tired tonight, but this morning I felt wound up so tight I thought I'd lose it if I was asked to do something I considered inane. And trust me, right now a lot of issues and events that held some significance to me yesterday I think are absolutely ridiculously stupid wastes of time today.
Nothing like a good old crisis to put life back in perspective.
Of course, I'm now over analyzing every twinge in my body. That back ache (that I've had several times over the past year or so) could be the cancer. Or that discomfort in my abdomen, which is a regular occurrence, is a warning sign. It doesn't help I have a cold and my sinuses are draining into my belly or that I'm super upset, which makes my gut ache more. I've come to the conclusion I can't rationally assess anything going on with my body right now.
But yesterday, despite the cold, I felt pretty darn good. Go figure. Nothing like a doc telling you the cancer could be back and growing in the deep dark recesses of your belly to send you into a psychological tailspin.
While I say I can't fight another summer or pull out quotes from articles talking about the lack of proof of positive thinking, I don't really mean it. I will fight as long and as hard as I possibly can. I will be positive again, and believe in myself and the treatment. But not right now. I need time to grieve and come to terms with the fact the cancer might be back.
Of course, my awespme sister researched other causes for elevating CA-125 levels last night. One plausible cause could be an internal infection. Maybe my gallbladder is acting up. Maybe some other organ (hopefully one of the non-essential ones) is infected. I'd be happy to undergo some surgery to fix it up, and perhaps remove the gallbadder and fix the hernia, if it meant I didn't have cancer again. It's amazing what becomes perfect acceptable when the alternative is far worse.
The next five weeks, and possibly beyond, are going to be an emotional roller coaster. I can't predict what my reactions or emotional state will be each day. I am going to try to enjoy myself as much as I can. I've got some good things to look forward to and I may just plan some additional fun events, just because I can.
Thank you to all who stepped forward to offer support today. It really means a lot to me. With you, I can get through this - as crappy as it may be.
One day at a time and die cancer die.
Tina
As you can imagine, Michael and I had a rough day. We're still in shock (and maybe even in a bit of denial). We're so very, very sad. If sadness could ooze out of our pores, we'd be covered in it. And we're angry. I am so angry I could throw a good old-fashioned temper tantrum complete with screaming and kicking. I'm tired tonight, but this morning I felt wound up so tight I thought I'd lose it if I was asked to do something I considered inane. And trust me, right now a lot of issues and events that held some significance to me yesterday I think are absolutely ridiculously stupid wastes of time today.
Nothing like a good old crisis to put life back in perspective.
Of course, I'm now over analyzing every twinge in my body. That back ache (that I've had several times over the past year or so) could be the cancer. Or that discomfort in my abdomen, which is a regular occurrence, is a warning sign. It doesn't help I have a cold and my sinuses are draining into my belly or that I'm super upset, which makes my gut ache more. I've come to the conclusion I can't rationally assess anything going on with my body right now.
But yesterday, despite the cold, I felt pretty darn good. Go figure. Nothing like a doc telling you the cancer could be back and growing in the deep dark recesses of your belly to send you into a psychological tailspin.
While I say I can't fight another summer or pull out quotes from articles talking about the lack of proof of positive thinking, I don't really mean it. I will fight as long and as hard as I possibly can. I will be positive again, and believe in myself and the treatment. But not right now. I need time to grieve and come to terms with the fact the cancer might be back.
Of course, my awespme sister researched other causes for elevating CA-125 levels last night. One plausible cause could be an internal infection. Maybe my gallbladder is acting up. Maybe some other organ (hopefully one of the non-essential ones) is infected. I'd be happy to undergo some surgery to fix it up, and perhaps remove the gallbadder and fix the hernia, if it meant I didn't have cancer again. It's amazing what becomes perfect acceptable when the alternative is far worse.
The next five weeks, and possibly beyond, are going to be an emotional roller coaster. I can't predict what my reactions or emotional state will be each day. I am going to try to enjoy myself as much as I can. I've got some good things to look forward to and I may just plan some additional fun events, just because I can.
Thank you to all who stepped forward to offer support today. It really means a lot to me. With you, I can get through this - as crappy as it may be.
One day at a time and die cancer die.
Tina
Tuesday, May 24, 2011
Optimism fallacy
I read an article in More magazine on the weekend about the fallacy of positive thinking when it comes to cancer. There's a myriad of self-help books on the topic touting the immune-boosting effects of positivity and our culture has come to believe our emotional state is critical to our ability to fight disease, especially cancer.
"While the idea of "fighting" cancer is deeply rooted in our culture, there is no link between emotionall well-being and actual survival," says Cheryl Hawkes in her article The answer to cancer in the October 2010 issue. She goes on to say studies that tout the benefits of having a positive attitude are more likely to get published than those that say it has no effect. So that's why we've all be led to believe that positive thinking is the key to beating cancer.
While most of the time, I do believe a positive attitude can affect prognosis, today, I'm thankful this study pooh-poohs a good attitude because I'm pissed, sad and shocked. I went for my check up today and discovered, despite how awesome I feel, that my CA-125 is on the rise. This chemical marker to determine the presence of cancer steadily increased over my last two appointments.
I was absolutely certain I was in the clear. I went into the appointment today with the attitude I didn't need luck because I was more than fine. The CT scan six weeks ago showed the cancer shrinking and responding well to the chemo and Olaparib one-two punch. Yet at that same appointment, my CA-125 jumped from the 40s to 109. Ack.
When I found out about the jump during my appointment this morning, I tried to convince myself it was just a blip (although, to be honest, I was freaking out in the back of mind). Dr. H called himself this afternoon once he got today's CA-125 number of 250. Note: When the doctor calls himself, it's NOT good news.
This stupid disease is seriously out to get me. While I'm not ready to raise the white flag to it, I cringe at the thought of more chemo and treatment.
Although I tried to get Dr. H to talk about what would happen if I had two high CA-125 results in a row during my appointment - and before we knew it is indeed rising rapidly - he said we'd cross that bridge when we come to it. Damn it, we've crossed that stupid bridge now, haven't we?
So next steps are a CT scan and CA-125 during my next appointment on June 28. Yes, I have to wait five weeks with this worry and dread filling my heart before I know. He assured me we have "lots of options." What options?! What can I do? What will keep me alive? Crap. I feel so friggin' desperate.
During the phone call, Dr. H said he'd start gathering information about these many options to discuss at the next appointment. Regardless, none of them are going to be as good as enjoying the summer, living a normal life, working on projects that mean something and forgetting about cancer. Today I even optimistically told him there are days when I don't even think about cancer. Sigh, I guess those days are gone again.
I am absolutely horrifically despondant about this news.
To top it off, I feel I've let everyone down. Here I was supposed to be fine, supposed to be the Olaparib girl, supposed to stop putting everyone else through the worry and trauma of cancer, if even for a few months and yet, it looks like it's coming back. I know guilt is a useless emotion, but my good Catholic upbringing means I have it in spades.
Yet, I said to Michael tonight, I also feel I have no control. Regardless of what I do, the good attitude I have, the drugs I take, the good food I eat, the exercise regime I've established, this stupid disease is stronger, faster and more determined.
Then I say, "Why me? Haven't we been through enough?"
I hate throwing a wet blanket over everything with my bad news, especially for Michael's sister, who gets married in 2-1/2 weeks. I even contemplated keeping the news to myself, but that's not fair either. Nothing about this is fair.
I may need some shoulders to cry on or some steadfast people to keep me going over the waiting period (and beyond), I hope I can count on some of you.
Your angry, sad and shocked friend,
Tina
a.k.a. NOT the Olaparib poster girl
"While the idea of "fighting" cancer is deeply rooted in our culture, there is no link between emotionall well-being and actual survival," says Cheryl Hawkes in her article The answer to cancer in the October 2010 issue. She goes on to say studies that tout the benefits of having a positive attitude are more likely to get published than those that say it has no effect. So that's why we've all be led to believe that positive thinking is the key to beating cancer.
While most of the time, I do believe a positive attitude can affect prognosis, today, I'm thankful this study pooh-poohs a good attitude because I'm pissed, sad and shocked. I went for my check up today and discovered, despite how awesome I feel, that my CA-125 is on the rise. This chemical marker to determine the presence of cancer steadily increased over my last two appointments.
I was absolutely certain I was in the clear. I went into the appointment today with the attitude I didn't need luck because I was more than fine. The CT scan six weeks ago showed the cancer shrinking and responding well to the chemo and Olaparib one-two punch. Yet at that same appointment, my CA-125 jumped from the 40s to 109. Ack.
When I found out about the jump during my appointment this morning, I tried to convince myself it was just a blip (although, to be honest, I was freaking out in the back of mind). Dr. H called himself this afternoon once he got today's CA-125 number of 250. Note: When the doctor calls himself, it's NOT good news.
This stupid disease is seriously out to get me. While I'm not ready to raise the white flag to it, I cringe at the thought of more chemo and treatment.
Although I tried to get Dr. H to talk about what would happen if I had two high CA-125 results in a row during my appointment - and before we knew it is indeed rising rapidly - he said we'd cross that bridge when we come to it. Damn it, we've crossed that stupid bridge now, haven't we?
So next steps are a CT scan and CA-125 during my next appointment on June 28. Yes, I have to wait five weeks with this worry and dread filling my heart before I know. He assured me we have "lots of options." What options?! What can I do? What will keep me alive? Crap. I feel so friggin' desperate.
During the phone call, Dr. H said he'd start gathering information about these many options to discuss at the next appointment. Regardless, none of them are going to be as good as enjoying the summer, living a normal life, working on projects that mean something and forgetting about cancer. Today I even optimistically told him there are days when I don't even think about cancer. Sigh, I guess those days are gone again.
I am absolutely horrifically despondant about this news.
To top it off, I feel I've let everyone down. Here I was supposed to be fine, supposed to be the Olaparib girl, supposed to stop putting everyone else through the worry and trauma of cancer, if even for a few months and yet, it looks like it's coming back. I know guilt is a useless emotion, but my good Catholic upbringing means I have it in spades.
Yet, I said to Michael tonight, I also feel I have no control. Regardless of what I do, the good attitude I have, the drugs I take, the good food I eat, the exercise regime I've established, this stupid disease is stronger, faster and more determined.
Then I say, "Why me? Haven't we been through enough?"
I hate throwing a wet blanket over everything with my bad news, especially for Michael's sister, who gets married in 2-1/2 weeks. I even contemplated keeping the news to myself, but that's not fair either. Nothing about this is fair.
I may need some shoulders to cry on or some steadfast people to keep me going over the waiting period (and beyond), I hope I can count on some of you.
Your angry, sad and shocked friend,
Tina
a.k.a. NOT the Olaparib poster girl
Check up
It's off to Hamilton this morning for my six-week check up. It's a beautiful morning and the drive should be pleasant. Best of all, I get to spend the time with my sister.
Today the vampires (oops, nurses) will draw blood for the usual plethora of tests. Then it's off to see Dr. H and C to talk about how I've been feeling. Luckily, I can say I feel pretty darn good despite some cold symptoms that started yesterday (bad germs I probably picked up at work).
I will tell them about some abdominal tenderness and weird pains I've felt a time or two under my breasts (a different side each time), but I suspect they'll consider these minor aches inconsequential and send me on my way. At least, that's what I'm hoping.
Last year at this time, I had a CT scan, which confirmed the cancer was back. Luckily, I have no fears of that right now (although, one can never be entirely sure). My next CT scan is in six weeks and I'll look forward to hearing the all clear.
As for today, I'm looking forward to getting the A-ok so I can continue to enjoy life.
Tina
Today the vampires (oops, nurses) will draw blood for the usual plethora of tests. Then it's off to see Dr. H and C to talk about how I've been feeling. Luckily, I can say I feel pretty darn good despite some cold symptoms that started yesterday (bad germs I probably picked up at work).
I will tell them about some abdominal tenderness and weird pains I've felt a time or two under my breasts (a different side each time), but I suspect they'll consider these minor aches inconsequential and send me on my way. At least, that's what I'm hoping.
Last year at this time, I had a CT scan, which confirmed the cancer was back. Luckily, I have no fears of that right now (although, one can never be entirely sure). My next CT scan is in six weeks and I'll look forward to hearing the all clear.
As for today, I'm looking forward to getting the A-ok so I can continue to enjoy life.
Tina
Friday, May 20, 2011
Sweet sixteen
Sixteen years.
At 16 years old, an individual can drive a car, hold a job and is usually in grade 10. He or she has gone from a dependent, helpless infant to a person verging on adulthood.
When you think about 16 years in that context, it's a long time. But to me, today, it's not. May 20 marks the 16th anniversary of day I married the love of my life.
In some ways, it feels as though we've been together forever. It's hard to recall the time before Michael. But then again, I want another 16, 20, 30 years with him.
Little did we know when we repeated the words, "in sickness and in health" what awaited us. But life never works out exactly as we plan when we're young and idealistic (or even older and a little jaded). The strength of the marriage can be judged on how the couple navigates the bumps in the road - and we've encountered a few big ones.
Don't get me wrong, like any couple, we don't always see eye to eye. But I wouldn't trade my life with Michael for the world. And I hope and pray that despite the sickness we've encountered, we have many more years to celebrate our marriage.
Happy anniversary, my love.
Tina
At 16 years old, an individual can drive a car, hold a job and is usually in grade 10. He or she has gone from a dependent, helpless infant to a person verging on adulthood.
When you think about 16 years in that context, it's a long time. But to me, today, it's not. May 20 marks the 16th anniversary of day I married the love of my life.
In some ways, it feels as though we've been together forever. It's hard to recall the time before Michael. But then again, I want another 16, 20, 30 years with him.
Little did we know when we repeated the words, "in sickness and in health" what awaited us. But life never works out exactly as we plan when we're young and idealistic (or even older and a little jaded). The strength of the marriage can be judged on how the couple navigates the bumps in the road - and we've encountered a few big ones.
Don't get me wrong, like any couple, we don't always see eye to eye. But I wouldn't trade my life with Michael for the world. And I hope and pray that despite the sickness we've encountered, we have many more years to celebrate our marriage.
Happy anniversary, my love.
Tina
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