Just reread this post from some time back and realizing how far I have come and how grateful I am today. 🙂
I just finished teaching 8 weeks of classes. It was intense and demanding and it was the first time teaching this course since I finished treatment for breast cancer. When I was first diagnosed, I was not sure I would ever finish treatment, survive this long, go back to work, or ever feel better. Teaching was hard. But, I am back.
I am, piece by piece, attempting to get my life back.
I remember joking with a friend of mine this time last year after he remarked how it was good to see me still in one piece . . . I laughed and told him that it was “the piece that was still left”. (After all there had been surgeries and parts removed).
I thought it was very funny at the time. I know some of my friends thought it was odd that I made fun of my disease. But, it was…
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I came across this post from some time back about survivorship and the limbo of it all. I was struck by the fact that I was cooking so much back then. I am reposting this again to simply remind myself that a) I CAN cook (so I have NO excuse for letting that go for the most part lately) and b) I am much better these days than I was back then, except that I was a better cook 🙂
According to the Centers for Disease Control (CDC), there are nearly 12 million cancer survivors in the United States. That is a pretty big number. The CDC defines a cancer survivor as “anyone who has been diagnosed with cancer, from the time of diagnosis through the balance of his or her life”.
According to this definition, I was a “survivor” the same day I became a cancer patient. I sure didn’t feel like one.
There are many definitions of survivor. The CDC’s definition seems to be the most broad. But, regardless of how “survivor” is defined, survivorship care is something that seems sorely lacking. While survivorship care is a hot topic for blog posts, books on life after cancer, and websites like Livestrong and the Mayo Clinic’s website, there seems to be a disconnect between what you see online or in print and what you actually get from your doctor. Obviously…
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It used to be that waiting for test results was the hardest part. I will admit that my appointment with my oncologist – taking a different turn than I anticipated – absolutely threw me for a loop. But, I have had a few days to get my head around it. I no longer have sweaty palms, nausea and sleepless nights. I had a hard time on Monday night and Tuesday. But, then I decided to snap back into the life I have . . . the truly wonderful life that I have . . . and simply enjoy it. And, I have decided that should the news be bad, well, then the news is bad and I will endeavor to continue to enjoy my life.
I am no longer fearing the results – at least not completely. There is a part of me that is resigned to it . . . to the possibility of receiving bad news. To say that I am not fearful of getting bad news would be dishonest. But, I have accepted that it is a possibility. I have so many friends who are currently facing cancer for a second and even third time and many who are stage IV and who have run out of treatment options. So when I think of my own situation – that there is this possibility that the suspicious area is a recurrence – I really can’t get too worked up over it. What can I do? There are signs that are not good and then again, it could all be fine.
All I can do is hope and pray and ask others to do the same 🙂
I am a bit upset that back in June – when the red spot appeared on my left breast – that my primary care physician did not test for anything other than skin cancer. The lesion – after all – appeared on my breast and I have a history of breast cancer (DUH)! But, I am also (was anyway) upset with myself for not second and third guessing my doctors like I used to always do.
I have let my guard down. I have become more trusting of my own body and of my doctors – that this was just some routine thing and that benign meant benign. How was I supposed to know that a biopsy of skin on my breast would not detect breast cancer unless it was specifically run for breast cancer markers?!!! But, that is just it, the old, hyper-vigilant patient that I used to be would have asked that “stupid” question. But, instead I trusted my pcp doc. And when he gave me the test results that the biopsy was negative for cancer – well, I presumed that meant any kind of cancer.
My six month check up with my oncologist unveiled another possibility – that the red spot (now being unaffectionately referred to as a “lesion”) could be a breast cancer recurrence. First the nurse examined me. “What about this lesion here, how long have you had that?” I was taken aback by this small red splotch of a bump being referred to as a lesion. What did that mean, I thought. She did not like the looks of it. She quizzed me about the biopsy that had been run on it:
Had the doctor run ER, PR, HER2 markers? How long ago was this biopsy done? We will need to get that block from the pathologist and blah, blah, blah, blah, blah . . .
I heard nothing after that . . . she left the room.
A few minutes later, I heard my oncologist and the nurse talking outside the exam room: “Her lymph nodes are swollen on the left side” . . . “yes, the lesion is on her left side” . . .
Shit. Shitty-shit-shit-shit-shit! Take a deep breath.
I sat in the exam room, listening to their conversation outside (the nurse filling my oncologist in on what she discovered in her exam of me a few minutes prior) and then the hushed tones that followed that I could not discern . . . were, well, disconcerting not to mention the fact that it made me feel like I was a five year old. I get it. They don’t want to alarm me. I get it. But, it only served to alarm me. And I don’t like it when doctors and nurses refer to me in the third person. It is weird, simply weird. Takes me right back to being a cancer patient, to days when I was too weak to be the person that medical staff talked directly too, too sick to take in the information, too sick to be trusted with it – so they told a friend in the room or my parents. I detest those days. I long for those days to be over forever. And then I think of my friends who are enduring days like that with really no hope of anything more and I feel guilty for even asking God or anyone for something better for myself. Part of that survivor’s guilt – a recent topic in the cancer world.
My oncologist is an amazing doctor. But, her new nurse could use a little work on her bedside manner. I know she is just doing her job and she was (for which I am grateful) very thorough. The last thing I need is for yet another doctor to not run the proper tests. That would not be good. But, I would have preferred her to have filled my oncologist in on her findings either out of my hearing distance – or – to simply have done it in the room with me.
I don’t know how I would face cancer if it were to happen to me again. I just know this: I am happy today. I am healthy today (at least I feel that way) and if someone tells me I have cancer again, then I will still view my body as healthy. I will still view my body as capable of healing. I don’t have any other choice. And, at this point, there is absolutely no benefit in borrowing trouble or wondering “what if”. I spent too much time doing that already. When I was diagnosed with breast cancer in 2009 I was urged my my doctors to attend support groups. I tried it. I attended a breast cancer support group but found it pretty difficult. I then attended a support group for young women with cancer (all types). That group was a bit better. But, ultimately I stopped going.
I haven’t gone in a few years. But, I have stayed in touch with the women I met in the beginning. I am the only person from my support group that was diagnosed with HER2 positive cancer that is alive and N.E.D. (No Evidence of Disease). Everyone I met has had a recurrence and is either facing treatment now or is sadly, already gone. That is part of the reason it has been so hard to let go of cancer being this ever present thing in my life – the constant news of friends getting bad news and the loss of so many friends to this shit disease.
The daily pain I used to wake up with also made escaping thoughts of cancer seemingly impossible. It was, after all, the cancer (treatments, surgeries, etc.) that made my days start in pain and end in pain. So, not thinking about cancer was pretty hard.
But, this past year I have lived more cancer free than ever. I am grateful for that, so grateful. It is a freedom that I have longed to feel for some time. I have lived longer than I was told I would likely live and for that I am so very grateful. I hope, of course, to have many more cancerfree years. But whatever comes my way I will do my best to live the way I want to and need to.
To that end, I have decided to do one thing for myself every day and that is to see the ocean. I moved to the beach after I completed treatment. It was a goal of mine to be near the ocean and to live more simply. I am very lucky to be here (in all senses of that word). I go to bed each night with my window open and listen to the waves. That is an amazing and wonderful thing.
Yesterday I went on a four mile walk with a friend. There is a beautiful preserve here – lots of birds, water and grasses and just beautiful scenery and a nice walking trail and view of the beach.
Today was my first official day of “seeing the ocean every day”. Here are some pictures of today (and yesterday’s visit too).
I appreciate your prayers and good wishes. It means so much to me, so thank you.
Much love and peace,
Wow, this post was four years ago, pretty much to the day. And, today, I am again, thinking these same thoughts, so it seems appropriate to “reblog” it.
I had a biopsy back in June of a suspicious looking red area (small) on my left breast. My primary care physician did the biopsy and sent it out for testing and the pathology came back benign. I did not realize that “benign” in this case only referred to skin cancer – as in the red spot was not skin cancer.
I saw my oncologist yesterday. She saw the red spot on my left breast and explained that breast cancer can recur in the skin. She further explained that apparently the testing in June should have included testing for breast cancer markers. So now they are running a stain (on the same sample from June) to see if it tests positive for breast cancer. Ugh, sigh. My head was spinning yesterday (and, I confess, much of today).
I appreciate any prayers, good juju, positive vibes, etc., you can send my way.
Hoping for good news.
Much love and peace,
I lost a friend today.
I woke up this morning and read the following message:
“Did you hear the news about ______? She died last night. They think it was a combination of alcohol and pills . . . ”
I am so sad that she was so sad and in so much pain. I know she had been struggling – both with physical and emotional pain.
It is very hard to wrap my brain around someone choosing to die. And much harder still to wrestle with the fact that my friend chose to die.
I wish my friend peace. I am without words and my heart aches.Nothing Gold Can Stay, by Robert Frost Nature’s first green is gold, Her Hardest hue to hold Her early leaf’s a flower; But only so an hour. Then leaf subsides to leaf, So Eden sank to grief, So dawn goes down to day, Nothing gold can stay.