Yet another follow-up appointment with the oncology office today. A good appointment, however, as we were able to get copies of the latest test results. I now have proof in my hot little hands that my tumor markers are really low, and my bone scan shows no sign of metastatic disease or arthritis. We decided to go back to the Tamoxifen, too. I hate Tami, I really do,
but I understand the necessity of hormone therapy and know I have to do
this.
A very wonderful day indeed!
Except...I found myself crying uncontrollably. Like last night at dinner - the tears just poured down my face. And I can't stop, no matter how hard I try. The sadness and exhaustion are overwhelming and undermining and I feel trapped at the bottom of a deep, dark well with no way to climb out.
I mention this to my NP who kindly points out that I look utterly exhausted. She asks if I'm still running; I explain how intense this last semester has been, which has cut into any time for running / yoga / exercise (so no, I'm not running...except in circles, it seems). We talk about everything that has happened in the last year, and she suggests that perhaps I've hit "the wall". "You had so much to keep you occupied and focused when you were in treatment," she says, "As soon as you finish treatment you start the Semester from Hell. And now you're done. You need a chance to recover."
I recognize that I'm depressed. Maybe not quite clinically depressed, or a Major Depressive Episode (hasn't been two months yet), but it's there. Our NP even indicates that some of my pain could be attributed to the physical side effects of depression. Who knows. Who cares?? I just want a nap.
It's hard to be okay with feeling sad when I'm good and healthy and better! It's difficult - nay, impossible - to give myself permission to relax and repair and recover. I should be happy, right? I should be jumping up and down with joy and smiling and running and loving and grateful to be alive!!! So why do I feel as if my soul has deflated and my spirit has flown away?
It's embarrassing to feel this way, to feel so weak and helpless, and so incredibly selfish. I just want to find my happiness again.
Life goes on after cancer, but it's infinitely more complicated and exhausting. Even in the light of positive outcomes, there can be struggle and sadness in the shadows.
Thursday, December 27, 2012
Tuesday, December 18, 2012
The Gift of Joy
Today, I got the call I had been waiting for over a year.
A couple of months ago I stopped taking my Tamoxifen because of severe side effects. My doctor gave me a month off, during which some of my pain abated. But after a rousing "talking to" by Mr. Doctor (and some Oprah-esque A-Ha moments on my part) I chose to switch to another medication, Aromasin. Similar to Tami but not typically as effective, it also comes with its own cadre of side effects including (most often) joint pain, bone loss, and those ever-pleasant "personal" SEs.
Ugh. Only took two months this time to realize Aromasin wasn't going to work for me. Another visit to Mr. Doctor (who was much nicer this time...perhaps because Ken was with me and, well, it took us all of three seconds to realize Mr. Doctor was more interested in talking with Ken than he was with me...) and another trip to Club Med(ication vacation).
Mr. Doctor's concerns, however, were the continued bone, joint pain, and exhaustion. Rheumatoid arthritis was his first option - "sometimes a result of the taxane chemos," he says. NOW he tells me that. "And we'll run tumor markers, just in case," along with a host of other bloodwork (the first and only time I wished I still had my port). "Of course, your Vitamin D deficiency could be causing the pain," he says. News to my ears. Didn't realize I had been dealing with a Vit D deficiency.
Laurie, my Cancer Conceirge, calls me late last week. "I see you're coming back to visit after Christmas," she says, and I tell her what's been going on. That I had my bloodwork but am still waiting for the test results. So, bless her heart, she does what she does best - pulls my records to give me the results (why can't the doctor ever do this?)
Tumor markers are within normal limits.
RA factors are within normal limits.
Vitamin D is slightly lowered, but I'm on top of that.
The rest of my bloodwork looked perfect.
So - I am assured that means I don't have RA. And while tumor marker tests aren't always perfect, we can assume I don't have a new primary tumor.
Because Laurie is wonderful, she promises to call me the day after my bone scan to give me the results; she doesn't want to me "wait and worry" over Christmas (she is truly a blessing!)
The bone scan was yesterday. Same as the bone scan I had last year: injection of nuclear dye, wait 3 hours for it to course through my body and attach to any cancerous areas in my bones so I light up like a Christmas tree under a scanner. The scan was easy-peasy (I even get to keep my clothes on), and was over before I knew it.
But this time, the tech wouldn't let me see the scan. When I asked if he saw anything concerning he simply said, "The doctor will be in touch with you in 3 to 5 business days." And he escorted me to the door.
And so I panicked. Because the last time I felt that feeling of, "I know something but I can't really tell you, but by not really telling you I am really telling you, but you have to guess, and I can't confirm, but you know what I'm trying to say, right?" was after my biopsy. And we all know what happened after that...
Laurie called this morning, as I wended my way on 94 during rush hour to my internship.
My bone scan is clean. No sign of arthritis, and no sign of bone metastases.
I am now, truly, completely, formally, dating NED. There is no evidence of disease anywhere. No guessing or hoping there's no primary tumor hiding somewhere, no worrying that there's a met spot on my spine or hip or shoulder. Nothing.
So while I celebrated (totally the wrong word, but what else do you call it?) my Cancerversary just weeks ago, I can now happily celebrate (and that's totally the right word here!) my continued relationship with NED.
I couldn't have asked for a better Chrismukah gift. Cancer is still stupid, but life is so very, very good.
A couple of months ago I stopped taking my Tamoxifen because of severe side effects. My doctor gave me a month off, during which some of my pain abated. But after a rousing "talking to" by Mr. Doctor (and some Oprah-esque A-Ha moments on my part) I chose to switch to another medication, Aromasin. Similar to Tami but not typically as effective, it also comes with its own cadre of side effects including (most often) joint pain, bone loss, and those ever-pleasant "personal" SEs.
Ugh. Only took two months this time to realize Aromasin wasn't going to work for me. Another visit to Mr. Doctor (who was much nicer this time...perhaps because Ken was with me and, well, it took us all of three seconds to realize Mr. Doctor was more interested in talking with Ken than he was with me...) and another trip to Club Med(ication vacation).
Mr. Doctor's concerns, however, were the continued bone, joint pain, and exhaustion. Rheumatoid arthritis was his first option - "sometimes a result of the taxane chemos," he says. NOW he tells me that. "And we'll run tumor markers, just in case," along with a host of other bloodwork (the first and only time I wished I still had my port). "Of course, your Vitamin D deficiency could be causing the pain," he says. News to my ears. Didn't realize I had been dealing with a Vit D deficiency.
Laurie, my Cancer Conceirge, calls me late last week. "I see you're coming back to visit after Christmas," she says, and I tell her what's been going on. That I had my bloodwork but am still waiting for the test results. So, bless her heart, she does what she does best - pulls my records to give me the results (why can't the doctor ever do this?)
Tumor markers are within normal limits.
RA factors are within normal limits.
Vitamin D is slightly lowered, but I'm on top of that.
The rest of my bloodwork looked perfect.
So - I am assured that means I don't have RA. And while tumor marker tests aren't always perfect, we can assume I don't have a new primary tumor.
Because Laurie is wonderful, she promises to call me the day after my bone scan to give me the results; she doesn't want to me "wait and worry" over Christmas (she is truly a blessing!)
The bone scan was yesterday. Same as the bone scan I had last year: injection of nuclear dye, wait 3 hours for it to course through my body and attach to any cancerous areas in my bones so I light up like a Christmas tree under a scanner. The scan was easy-peasy (I even get to keep my clothes on), and was over before I knew it.
But this time, the tech wouldn't let me see the scan. When I asked if he saw anything concerning he simply said, "The doctor will be in touch with you in 3 to 5 business days." And he escorted me to the door.
And so I panicked. Because the last time I felt that feeling of, "I know something but I can't really tell you, but by not really telling you I am really telling you, but you have to guess, and I can't confirm, but you know what I'm trying to say, right?" was after my biopsy. And we all know what happened after that...
Laurie called this morning, as I wended my way on 94 during rush hour to my internship.
My bone scan is clean. No sign of arthritis, and no sign of bone metastases.
I am now, truly, completely, formally, dating NED. There is no evidence of disease anywhere. No guessing or hoping there's no primary tumor hiding somewhere, no worrying that there's a met spot on my spine or hip or shoulder. Nothing.
So while I celebrated (totally the wrong word, but what else do you call it?) my Cancerversary just weeks ago, I can now happily celebrate (and that's totally the right word here!) my continued relationship with NED.
I couldn't have asked for a better Chrismukah gift. Cancer is still stupid, but life is so very, very good.
Wednesday, October 10, 2012
That horrible moment when you realize your life will never be the same...
Apparently, I'm in denial.
Personally I like denial, because it's a pleasant and happy place to be. Life is nice here, like floating on the lake on a warm summer's day, leaning back to feel the hot sun on your face, dipping your fingertips in the cool water.
And then the heaven's open up with a crack of thunder and you're whirling around in a waterspout, hanging on for dear life.
Dammit.
I met with my medical oncologist today - not our usual nurse practitioner, and not the doctor we've seen in the past. This is a new doctor, and I'm not certain why I saw him instead of my usual doctor, but I think it has to do with the fact that he's the devil. Or, it's because he's very good at explaining statistics, and for that he's also the devil.
Which explains the waterspout of crap I heard in the office today.
He is glad to know that I'm feeling so much better since dropping Tami, "but let's talk about what that really means." Several points emerged during our (one-sided - HIS) conversation:
He spends the next several minutes quoting studies and statistics, down to the single percentage point of the benefits of each of the treatments. He explains why it's important for me to do at least two, if not 10 years of hormonal therapy. He talks about this as though it's a given, as though I don't understand the inherent risk of not doing it. And I'm mad not because he's wrong - but because he's right.
He explains that I can forgo Tami but really should try one of the aromatase inhibitors (Arimidex, Femara or Aromasin), which is given to post-menopausal cancer survivors (and sometimes to those with metastatic cancer). Of course unlike Tami - which is a bone-strengthener - the AI's will actually deplete my bones further. "So, for someone like yourself who is osteopenic, we would also put you on Fosomax or another bisphosphonate."
So I could take an AI AND a bisphosphonate. But wait...it gets better.
When I was first diagnosed with osteopenia our NP Dianne mentioned bisphosphonates are great at building bones, but come with a host of really nasty side effects, including jaw necrosis in a significant percentage of patients who use it. It also often causes severe joint pain.
As do the AI's. "But not as bad as Tamoxifen," says the doctor. "But given your history of side effects, you may have trouble with the AI's, too."
The additional benefit of AI's or Tami is the reduced recurrence for contralateral breast cancer (Ethel, not Lucy this time). For every year after my original diagnosis, my risk of contralateral BC rises 0.5%. "If you were 75 it might be different, but you've got 30 good years - that's a 15% increase - to think about."
"So," he says, "you have two choices. One is to keep believing what you believe and hope your cancer doesn't come back, or try an AI and see if you can tolerate it."
I just sit there and stare at him, but I don't think he was really paying attention. He writes me a prescription for Aromasin, and asks me to come back in three months. "Of course, if it's too hard you can always stop. But I'd really think about all we've talked about today. So call us if you decide to stop." He walks me to the front desk, and before I can say goodbye or thank you, he turns and walks away.
I'm not sure how I feel about all of this yet. Ken wasn't able to come with me today because he was out of town, so we need to talk about our options. But I can't help but feel that regardless of my choice, this whole stupid cancer thing isn't going to go away quietly or gently. I never wanted a 100% guarantee that the cancer wouldn't return - I know I'm never going to have that, no one does - but I wanted to believe that I had done all the hard work already (slash, poison and burn) and that hormonal therapy was an "added bonus" of benefit. Instead, what I heard this morning is it's just as important as everything else in keeping metastatic disease at bay. And so my denial comes full circle, as I realize that I want to make an informed decision, and I just got more information than I necessarily wanted to hear.
I'm taking my M&M's, my fat ass, and my raft and going back out to the Sea of Denial...at least until Ken comes home later.
Thoughts, anyone?
Personally I like denial, because it's a pleasant and happy place to be. Life is nice here, like floating on the lake on a warm summer's day, leaning back to feel the hot sun on your face, dipping your fingertips in the cool water.
And then the heaven's open up with a crack of thunder and you're whirling around in a waterspout, hanging on for dear life.
Dammit.
I met with my medical oncologist today - not our usual nurse practitioner, and not the doctor we've seen in the past. This is a new doctor, and I'm not certain why I saw him instead of my usual doctor, but I think it has to do with the fact that he's the devil. Or, it's because he's very good at explaining statistics, and for that he's also the devil.
Which explains the waterspout of crap I heard in the office today.
He is glad to know that I'm feeling so much better since dropping Tami, "but let's talk about what that really means." Several points emerged during our (one-sided - HIS) conversation:
- Because of the chemo, my bloodwork shows that I am currently post-menopausal, which means my body is producing less estrogen than when I was pre- or peri-menopausal. "But your fat is still storing estrogen," he said. What I heard was, "Lose weight, lady!" Yeah, yeah...I'm working on it.
- My cancer is aggressive. He says that the small size of my tumor and my node-negative status are still in my favor, "but that Oncotype score (42) is really troubling. That test is very indicative of how your cancer behaves, and yours is aggressive." I'm such an overachiever.
- "Recurrence means metastatic disease, which is incurable," he says. "It's very rare to have another primary tumor, although it can happen." Yeah, it can, cuz I know people it's happened to. Thanks.
- Without the full benefit of chemo AND Tami, my recurrence rate changes from 28% (without any treatment) to about 23%. Unless I take the Tami OR another hormone therapy, my recurrence rate will not reach the 18% quoted on the Oncotype test.
- If I was triple negative (meaning ER-, PR- and HER2-), "we'd do chemo and radiation and send you on your way." No hormone treatment because it doesn't work when there are no hormone receptors in the cancer.
He spends the next several minutes quoting studies and statistics, down to the single percentage point of the benefits of each of the treatments. He explains why it's important for me to do at least two, if not 10 years of hormonal therapy. He talks about this as though it's a given, as though I don't understand the inherent risk of not doing it. And I'm mad not because he's wrong - but because he's right.
He explains that I can forgo Tami but really should try one of the aromatase inhibitors (Arimidex, Femara or Aromasin), which is given to post-menopausal cancer survivors (and sometimes to those with metastatic cancer). Of course unlike Tami - which is a bone-strengthener - the AI's will actually deplete my bones further. "So, for someone like yourself who is osteopenic, we would also put you on Fosomax or another bisphosphonate."
So I could take an AI AND a bisphosphonate. But wait...it gets better.
When I was first diagnosed with osteopenia our NP Dianne mentioned bisphosphonates are great at building bones, but come with a host of really nasty side effects, including jaw necrosis in a significant percentage of patients who use it. It also often causes severe joint pain.
As do the AI's. "But not as bad as Tamoxifen," says the doctor. "But given your history of side effects, you may have trouble with the AI's, too."
The additional benefit of AI's or Tami is the reduced recurrence for contralateral breast cancer (Ethel, not Lucy this time). For every year after my original diagnosis, my risk of contralateral BC rises 0.5%. "If you were 75 it might be different, but you've got 30 good years - that's a 15% increase - to think about."
"So," he says, "you have two choices. One is to keep believing what you believe and hope your cancer doesn't come back, or try an AI and see if you can tolerate it."
I just sit there and stare at him, but I don't think he was really paying attention. He writes me a prescription for Aromasin, and asks me to come back in three months. "Of course, if it's too hard you can always stop. But I'd really think about all we've talked about today. So call us if you decide to stop." He walks me to the front desk, and before I can say goodbye or thank you, he turns and walks away.
I'm not sure how I feel about all of this yet. Ken wasn't able to come with me today because he was out of town, so we need to talk about our options. But I can't help but feel that regardless of my choice, this whole stupid cancer thing isn't going to go away quietly or gently. I never wanted a 100% guarantee that the cancer wouldn't return - I know I'm never going to have that, no one does - but I wanted to believe that I had done all the hard work already (slash, poison and burn) and that hormonal therapy was an "added bonus" of benefit. Instead, what I heard this morning is it's just as important as everything else in keeping metastatic disease at bay. And so my denial comes full circle, as I realize that I want to make an informed decision, and I just got more information than I necessarily wanted to hear.
I'm taking my M&M's, my fat ass, and my raft and going back out to the Sea of Denial...at least until Ken comes home later.
Thoughts, anyone?
Friday, September 7, 2012
What Would Tami Do?
For the last six weeks I've had a very pleasant and much-needed break from cancer. Active treatment ended and I felt like I needed to move forward with my life. I took naps. I tended the garden. I ran and did yoga. I spent time rolling around in the grass with my grandchildren. I gave my sister an ice-cream cake for her birthday. I took apart my sofa and reassembled it on the other side of the living room. Ken and I took a week-long vacation on the beach where we walked, read, napped, and restored our bodies and souls.
For a while, I actually forgot I had cancer. How wonderfully sweet!
Today was my first three-month follow up with my medical oncologist. It was good to see familiar faces and get many hugs; I was even teased about "dressing down" for today's appointment (alas, no Boob Fairy costume, which has apparently become a popular story around the onco's office).
What can be hard to explain is how difficult walking back into that office turned out to be. Ken and I had a few minutes to ourselves before meeting with our favorite nurse practitioner Dianne - and I rather suddenly and intensely fell apart. There is a specific smell in the oncology office that immediately hits your nose; I could instantly taste the "flush" of saline and Heparin injected into my port right before a chemo treatment. I sat in one of the same rooms, in the same chair, where I had before been prepped and sat waiting for my hours in the infusion center. And like a terrible waking nightmare, I flashed back to treatment and pain and sorrow and exhaustion and emotions I hadn't felt in months, and I fell apart, sobbing helplessly in Ken's arms.
But it was okay - because I needed to do that. I needed to feel all of that to process that I was there, at that moment, because of all the work I had done before, not in spite of it. That I am alive because of the treatment, and because of the wonderful treatment of the staff in the oncology office. So yeah, cancer still sucks, but I'm still here, and today is another day to be grateful. So I wiped away my tears, cracked a joke, and happily greeted Dianne with a hug and a smile.
The exam itself was a wonderful experience, and turned up absolutely nothing. No lumps, bumps, worries or concerns. Ken and I talked with Dianne about the pain and stiffness I've been experiencing since starting the Tamoxifen three months ago. In particular my hands are literally arthritic; it is exceptionally painful to walk. Getting up from a sitting position actually takes time because my back and hips hurt and are so stiff. I have had to cut back on running because my knees hurt, and yoga has become a challenge. I wanted to wait for a few months and see if the side effects abated, but as of this morning they were still going strong. Dianne informed us that many women experience side effects on Tamoxifen, and it can take a year or longer to plateau and get better.
In a year, I'll be 50 - and I'll still feel like I'm 90.
I'm so not a science geek, but this is what I understand of Tamoxifen: Some cancers have hormone receptors (they are "receptor positive"). These receptors become "active" when a hormone binds to them, and then the cancer grows. Tamoxifen stops estrogen from binding to estrogen receptors in cancer cells, thereby keeping the cancer from growing (or coming back, so the theory goes). For someone with ER+ (estrogen-positive) breast cancer, Tamoxifen can be a helper in keeping cancer from recurring. It is a daily medication that is taken for five years. It has a host of side effects, including hot flashes, joint pain, bone loss, mood swings - oh, and the increased risk of blood clots, stroke, and uterine cancer.
For someone whose cancer is highly ER+, Tamoxifen can be incredibly beneficial. We learned, after my Oncotype test, that my cancer is very weakly ER+ (my score is 6.6, and 6.5 is the cut-off point for being ER negative). After reading and researching Tamoxifen and weighing its risks and benefits, and exploring the significant side effects I've been having, Ken and I made an informed decision to take a hiatus from the Tamoxifen for six weeks to see how I feel. We shared this decision with Dianne who supports us whole-heartedly. It's possible what I'm feeling is simply a long-term side effect from Taxol, but Dianne believes it's likely the Tamoxifen and believes I'll start feeling significantly better in a couple of weeks. She has asked that I come back again in six weeks to further discuss the decision, giving her time to gather more information and giving me time to see how I feel.
This is a good, positive and proactive decision - one that I am incredibly excited about. After so many months of treatment, I have a new appreciation for quality of life, and Tamoxifen (or Tami, as we fondly refer to her around here) has been particularly disruptive in that respect. Yesterday was my last Tami pill for the next six weeks, and I hope forever.
The only negative about today's appointment was the fact that I have continued to gain weight (another lovely SE of Tami). Because estrogen is a fat-storing hormone, the more fat I have the more estrogen I'm battling. So my promise to myself is that if I'm going to stop seeing Tami, then I have to also quit dating Ben and Jerry. I can control the estrogen through medication, or through weight loss - one or the other, the choice is mine.
So my new mantra will be, "What Would Tami Do?" when I reach for those cookies, or that extra piece of cake, or that soft-serve ice cream, or a handful of M&M's (Godiva chocolate does not count...a girl's gotta have limits, ya know?). It's a sacrifice I'm happy and willing to make, if it means I won't be 90 years old next year.
All is well, and all will be well.
 |
| Another beautiful sunrise over Lake Huron |
 |
| A lovely walk on a lovely morning |
Today was my first three-month follow up with my medical oncologist. It was good to see familiar faces and get many hugs; I was even teased about "dressing down" for today's appointment (alas, no Boob Fairy costume, which has apparently become a popular story around the onco's office).
What can be hard to explain is how difficult walking back into that office turned out to be. Ken and I had a few minutes to ourselves before meeting with our favorite nurse practitioner Dianne - and I rather suddenly and intensely fell apart. There is a specific smell in the oncology office that immediately hits your nose; I could instantly taste the "flush" of saline and Heparin injected into my port right before a chemo treatment. I sat in one of the same rooms, in the same chair, where I had before been prepped and sat waiting for my hours in the infusion center. And like a terrible waking nightmare, I flashed back to treatment and pain and sorrow and exhaustion and emotions I hadn't felt in months, and I fell apart, sobbing helplessly in Ken's arms.
But it was okay - because I needed to do that. I needed to feel all of that to process that I was there, at that moment, because of all the work I had done before, not in spite of it. That I am alive because of the treatment, and because of the wonderful treatment of the staff in the oncology office. So yeah, cancer still sucks, but I'm still here, and today is another day to be grateful. So I wiped away my tears, cracked a joke, and happily greeted Dianne with a hug and a smile.
The exam itself was a wonderful experience, and turned up absolutely nothing. No lumps, bumps, worries or concerns. Ken and I talked with Dianne about the pain and stiffness I've been experiencing since starting the Tamoxifen three months ago. In particular my hands are literally arthritic; it is exceptionally painful to walk. Getting up from a sitting position actually takes time because my back and hips hurt and are so stiff. I have had to cut back on running because my knees hurt, and yoga has become a challenge. I wanted to wait for a few months and see if the side effects abated, but as of this morning they were still going strong. Dianne informed us that many women experience side effects on Tamoxifen, and it can take a year or longer to plateau and get better.
In a year, I'll be 50 - and I'll still feel like I'm 90.
I'm so not a science geek, but this is what I understand of Tamoxifen: Some cancers have hormone receptors (they are "receptor positive"). These receptors become "active" when a hormone binds to them, and then the cancer grows. Tamoxifen stops estrogen from binding to estrogen receptors in cancer cells, thereby keeping the cancer from growing (or coming back, so the theory goes). For someone with ER+ (estrogen-positive) breast cancer, Tamoxifen can be a helper in keeping cancer from recurring. It is a daily medication that is taken for five years. It has a host of side effects, including hot flashes, joint pain, bone loss, mood swings - oh, and the increased risk of blood clots, stroke, and uterine cancer.
For someone whose cancer is highly ER+, Tamoxifen can be incredibly beneficial. We learned, after my Oncotype test, that my cancer is very weakly ER+ (my score is 6.6, and 6.5 is the cut-off point for being ER negative). After reading and researching Tamoxifen and weighing its risks and benefits, and exploring the significant side effects I've been having, Ken and I made an informed decision to take a hiatus from the Tamoxifen for six weeks to see how I feel. We shared this decision with Dianne who supports us whole-heartedly. It's possible what I'm feeling is simply a long-term side effect from Taxol, but Dianne believes it's likely the Tamoxifen and believes I'll start feeling significantly better in a couple of weeks. She has asked that I come back again in six weeks to further discuss the decision, giving her time to gather more information and giving me time to see how I feel.
This is a good, positive and proactive decision - one that I am incredibly excited about. After so many months of treatment, I have a new appreciation for quality of life, and Tamoxifen (or Tami, as we fondly refer to her around here) has been particularly disruptive in that respect. Yesterday was my last Tami pill for the next six weeks, and I hope forever.
The only negative about today's appointment was the fact that I have continued to gain weight (another lovely SE of Tami). Because estrogen is a fat-storing hormone, the more fat I have the more estrogen I'm battling. So my promise to myself is that if I'm going to stop seeing Tami, then I have to also quit dating Ben and Jerry. I can control the estrogen through medication, or through weight loss - one or the other, the choice is mine.
So my new mantra will be, "What Would Tami Do?" when I reach for those cookies, or that extra piece of cake, or that soft-serve ice cream, or a handful of M&M's (Godiva chocolate does not count...a girl's gotta have limits, ya know?). It's a sacrifice I'm happy and willing to make, if it means I won't be 90 years old next year.
All is well, and all will be well.
Tuesday, July 24, 2012
The end of this road
On November 22, 2011 our breast cancer journey began with my
official diagnosis. Today, with my
final radiation treatment, our journey has officially ended. No one uses the word “cured,” but
instead I am considered NED – No Evidence of Disease.
 |
| Paul Tejada Radiation Oncology Center |
 |
| Got me my final walking papers! |
 |
| No Boob Fairy this time - just me and my sweetie waiting for the doctor. |
I expect to be dating NED – with Ken’s blessing, I’m sure –
for many, many, MANY years to come.
It’s been a long eight months. And back in November I didn’t know that I would struggle at
times but that overall my experience would be better than many. I couldn’t imagine that the fear would
dissipate, that I would find joy and blessings in the darkest of moments, and
that my soul would recover along with my body. I couldn’t believe that I’d ever be
here, on this spot, with surgeries and chemo and radiation behind me.
But here I am, on the Other Side and feeling human again,
normal and useful, and looking forward and ahead to what the rest of my (long)
life has to offer.
No journey is ever complete without the proverbial Life Lessons along the way. Those are always good - but useless if unrecognized. I wanted very much to spend this time taking notice of my life - but I got a little sidetracked by shiny objects (like needles), or sometimes simply forgot (thanks, Chemo Brain).
I know that I let a lot of people down. I lived by the motto, “I make plans, not promises,” but that doesn’t mean that people’s feelings weren’t hurt along the way. I had good intentions that sometimes went wrong – or were simply forgotten – and that bothers me. I can't make up for those moments, but I am working to let it go and move forward. I know that those who love me will understand; those who don't understand will hopefully talk to me so we can resolve it.
I know that I let a lot of people down. I lived by the motto, “I make plans, not promises,” but that doesn’t mean that people’s feelings weren’t hurt along the way. I had good intentions that sometimes went wrong – or were simply forgotten – and that bothers me. I can't make up for those moments, but I am working to let it go and move forward. I know that those who love me will understand; those who don't understand will hopefully talk to me so we can resolve it.
People said a lot of interesting things to me along the way, too - none of which I took personally or felt hurt by. I was simply happy that people were talking to me, instead of not talking to me at all. It would have been easier to try and ignore what was going on or pretend it wasn't happening. I have been guilty of that myself in the past, even recently. Words like "cancer" tend to bring up really uncomfortable and scary feelings and maybe memories, and sometimes it's overwhelming to deal with. I had to first deal with my own fears, and then realize that others may have had their own fears, too.
At the same time, I lost some friends along the way, too – some through the front door, others through a back window. It took me a while to fully understand that it wasn't about me, but it still hurt. In the end I can now honestly say I wish them well and send them love and peace in their own journeys.
I
played the Cancer Card, but only in jest. I never wanted nor expected
to be the center of attention, and was often really uncomfortable with
the kindness shown by others. I decided to sit with those feelings for a
while to understand why I didn't feel worthy of being recognized...and I
ended up in an abyss of self-therapizing that I eventually abandoned
because I was driving myself further into therapy. Sometimes, a cigar
is just a big old smelly burny thing that no one really wants around.
And sometimes, we feel things that we have to get over because it's not
necessarily about us, it's about others.
I was supported both near and far by
many wonderful friends, and made new friends along the way, too. None of you realize how much every kind word, every thought, every prayer, every card or hug meant to me. The energy and positivity helped me on really awful days. I learned that I am loved - something I knew, but now I know. I hope you know that you have been with me in my heart every step of the way. You - yes YOU!
My family has been the biggest support (and my most vocal cheerleaders!!). My parents, my sisters, our children, our grandchildren, my in- and out-laws have loved me and cared for me in countless ways. I was surprised on more than one occasion by visits from afar, always when I needed them the most.
My family has been the biggest support (and my most vocal cheerleaders!!). My parents, my sisters, our children, our grandchildren, my in- and out-laws have loved me and cared for me in countless ways. I was surprised on more than one occasion by visits from afar, always when I needed them the most.
My relationship with Ken is stronger than ever before, in
ways I never could have imagined.
He truly is my rock, my partner, and my best friend. I never could have finished treatment without him by my side - not because I needed the help, but because my heart needed his encouragement and faith. He never made me feel guilty
for being too tired or in pain or angry or frustrated or simply sick. He wanted nothing more than for me to get through treatment and come out healthy and alive on the other side.
I found strength in myself that I didn’t know I had (or could have), and determination and resolve that I will carry with me from now on. I appreciate my life as it is because of its flaws and imperfections, not in spite of them. Nothing is as important as the interactions and relationships with others; time spent is never time wasted. Every moment is an opportunity to share a story, a kiss, a dream, a walk.
Now, today, this particular journey ends - but that means a new journey begins! I am choosing to leave this cancer behind me, and move forward not as Cancer Girl but as the chick with the cute new 'do. I doubt that cancer will ever be far from my mind, and I admit that I am already worried about Life After Treatment. But I can't move forward if I'm stuck in this spot, and so I need to actively let go of What Has Been, and work towards What Will Be. For me, that means making a few significant changes - in particular, this will be my final blog entry. I may update it from time to time, if something significant happens, but I need a break (and I'll bet you do, too). I am going take a vacation, clean my basement, paint my kitchen cabinets, work on my article for publication, run and do yoga, date my husband, play with my grandchildren, and live my life.
Lucy and I need to start healing, and we can't do that in Breastlandia. It's time to take a new step forward. So I end this part of my journey - and this part of my blog - the same way I began, with a little twist:
I had cancer, but it did not have me.
Tuesday, July 17, 2012
Dos Symmetry
That what I thought it was, and I laughed because my girls haven't been symmetrical since surgery...(okay, so it made more sense in my head).
Actually the word is dosimetry (the process of measuring doses of radiation) and the dosimitrist is the person who created this:
This is the plate used to direct the boost of radiation to the surgical area on my chest. Yesterday was the first of my final seven radiation treatments, called "boosts." Radiation is no longer being applied to my whole breast (my final treatment was last Friday, and on that day I learned they were using photons - seriously. I felt like I was in an episode of Star Trek!); instead it is being targeted directly at my tumor site. So this is my view of the "plate".
This is the general view of the machine:
At the end of the long "tube" attached to the center of the machine is the plate above. The table rises so that my chest is a few inches away from the plate, and then I am zapped with electrons. The plate keeps these electrons from the areas that do not need radiation, and allows the electrons to flow through the center "cut out" to my surgical site. The process takes about 10 seconds, and then it's over.
After 23 doses of full-breast radiation, and now 2 doses of targeted boosts, this is what my chest area looks like:
No, they're not new tattoos; a permanent marker was used to mark the outline of the plate, so that each treatment the plate is in proper alignment (the original tattoos were used to align the machine in conjunction with lasers, which aren't used now).
You may notice very little reddening of the area, which is phenomenal. For some reason, I have been blessed with very, very tough skin that has reacted minimally to the radiation. I'm pink in some areas (under my arm in particular, and under my breast), but that's the extent of the visible damage. My skin is tender to the touch and a different texture than the rest of my skin; the nipple is still changing and very tender. But no visible burns, blisters or open sores. It will take a couple more weeks for the radiation to completely leave the area so it's quite possible that the worst is yet to come, but for now I am very pleased with the physical SEs of the treatment.
Still tired, but that's getting better, too. Every day is a little better, and I look forward to feeling normal again - whatever that's going to feel like.
Treatment is coming to an end very soon, and life will continue to move forward. It has for everyone else; it will for me, too. I'm scared, in some ways, about getting back out in the Real World without the safety net of "cancer" to keep me busy and preoccupied.
Perhaps I'll simply spend time combing my hair...
Actually the word is dosimetry (the process of measuring doses of radiation) and the dosimitrist is the person who created this:
 |
| My personal plate |
This is the general view of the machine:
 |
| Finally remembered to bring my camera today! |
After 23 doses of full-breast radiation, and now 2 doses of targeted boosts, this is what my chest area looks like:
No, they're not new tattoos; a permanent marker was used to mark the outline of the plate, so that each treatment the plate is in proper alignment (the original tattoos were used to align the machine in conjunction with lasers, which aren't used now).
You may notice very little reddening of the area, which is phenomenal. For some reason, I have been blessed with very, very tough skin that has reacted minimally to the radiation. I'm pink in some areas (under my arm in particular, and under my breast), but that's the extent of the visible damage. My skin is tender to the touch and a different texture than the rest of my skin; the nipple is still changing and very tender. But no visible burns, blisters or open sores. It will take a couple more weeks for the radiation to completely leave the area so it's quite possible that the worst is yet to come, but for now I am very pleased with the physical SEs of the treatment.
Still tired, but that's getting better, too. Every day is a little better, and I look forward to feeling normal again - whatever that's going to feel like.
Treatment is coming to an end very soon, and life will continue to move forward. It has for everyone else; it will for me, too. I'm scared, in some ways, about getting back out in the Real World without the safety net of "cancer" to keep me busy and preoccupied.
Perhaps I'll simply spend time combing my hair...
Wednesday, July 11, 2012
Every-thing's com-ing up Rose-y...
Today was 21/30 - or 70% of radiation completed. *insert super-happy face here.* Two more whole breast treatments, then (starting next Monday) seven "boosts" aimed directly at the cancer site.
Lucy is pinking up a little bit around the edges; today I was able to see a faint "square" around my breast of pink/tan tissue due to the radiation. Apparently my skin and tissue will continue to "cook" for another two weeks post-final radiation because - well, because that's what happens when you pop a boob into a microwave for five weeks, I guess. My skin is tender overall, and (cover your eyes if you're not feeling up to TMI right now) my nipple is turning darker and changing shape (at least I didn't include a picture of it...maybe later...) I've given up wearing bras, much to Ken's delight, because frankly any fabric against my breast just really hurts right now. While it's hard to explain, the skin is changing, and I seriously worry about accidentally scratching it off. Of course my doctor is pleased as punch at how wonderful Lucy is holding up under this continued microwaving, and I am trying to remain optimistic that all will continue on a good path.
The fatigue is getting harder, but it's still good - so much better than chemo-related fatigue. Mostly, I just don't give a shit about anything. No, I'm not depressed - there's a general lack of energy, I guess. Bathroom needs to be cleaned? Oh, too tired, don't care, whatever. Water the flowers out back? I'd rather pray for rain. Go for a run? Hell yeah --- after my nap. So yes, I'm back to napping again (that started this week) and going to bed early. Can't sleep in late because, well, gotta hop in the microwave at 8:00 every a.m. Of course my doctor is pleased as punch at how wonderful I'm holding up after five weeks. Let's be honest, she's just a little too pleased in general, always so danged happy.
But I like my doctors that way - happy and pleased. And continuing to give me good news.
Every day is still a good day, even when I don't give a shit.
Lucy is pinking up a little bit around the edges; today I was able to see a faint "square" around my breast of pink/tan tissue due to the radiation. Apparently my skin and tissue will continue to "cook" for another two weeks post-final radiation because - well, because that's what happens when you pop a boob into a microwave for five weeks, I guess. My skin is tender overall, and (cover your eyes if you're not feeling up to TMI right now) my nipple is turning darker and changing shape (at least I didn't include a picture of it...maybe later...) I've given up wearing bras, much to Ken's delight, because frankly any fabric against my breast just really hurts right now. While it's hard to explain, the skin is changing, and I seriously worry about accidentally scratching it off. Of course my doctor is pleased as punch at how wonderful Lucy is holding up under this continued microwaving, and I am trying to remain optimistic that all will continue on a good path.
The fatigue is getting harder, but it's still good - so much better than chemo-related fatigue. Mostly, I just don't give a shit about anything. No, I'm not depressed - there's a general lack of energy, I guess. Bathroom needs to be cleaned? Oh, too tired, don't care, whatever. Water the flowers out back? I'd rather pray for rain. Go for a run? Hell yeah --- after my nap. So yes, I'm back to napping again (that started this week) and going to bed early. Can't sleep in late because, well, gotta hop in the microwave at 8:00 every a.m. Of course my doctor is pleased as punch at how wonderful I'm holding up after five weeks. Let's be honest, she's just a little too pleased in general, always so danged happy.
But I like my doctors that way - happy and pleased. And continuing to give me good news.
Every day is still a good day, even when I don't give a shit.
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