The response to my last post Floating Away was truly overwhelming. Thank you for your responses, comments, and emails last week.
I wrote three pieces while I was in Florida. I was planning to take time off from writing, to focus on the trip, the family time together, the joy. And I did. For most of it. The truth of the matter is that even joy right now is twinged with sadness. The writing I did was on my phone and was explosive and emotional.
That’s just the way it is. What I’m doing is grieving.
It’s been six months since the diagnosis of metastatic cancer. I’ve already run through one chemo regimen, wrung its effectiveness dry, and now have had to move on to something else. It will be at least one month before we know if it is working. There is no way to know if it will, and if it does, for how long. I’ll then be leapfrogging on to the next thing.
The loss of control is hard. It eats at me. I always wanted to believe that if I played by the rules, took the most aggressive route I could with my cancer the first time (more than 6 years ago), that I’d at least be NED for a decade or two.1 I was told my chance of recurrence was in the single digits. But cancer doesn’t listen to statistics– good or bad. The features of each person’s cancer are different. How aggressive it is, its resistance to certain treatments, its mutations.
I am not a risk-taker by most definitions of risk. I always felt that playing it safe would somehow benefit me.
I have come to believe that what I did actually did matter. I have come to believe it’s that not that it didn’t work. My surgeries, chemo, prophylacic oophorectomy… maybe, just maybe, those things bought me a few years. It’s possible I’d be dead already if I hadn’t done them.
I digress. But I want to reiterate that just because I am writing heavy pieces here, this isn’t the way you will find me if you see me in my daily life. There is joy, happiness, living. Please know that. I’ve always explored the darker emotions, the harder subjects.
Perhaps I feel the written land of the upbeat is for others. My niche is here, in the agony of this disease. There is so much emphasis on “being positive” and all of that; I feel the compulsion to show the flip side, too. I do not want to show the nitty gritty details of what the cancer is doing to me, what my side effects are, what appointments I go to; while important, they are a laundry list. Instead I choose to do what I have been doing all along here: writing my way through the forest of my emotions.
…………………………………
Sometimes as I’m drifting off to sleep I make a sound.
A sudden hmmmmm or a series of loud breaths.
If my child did this as I watched her sleep I’d furrow my brow,
stroke her hair,
pull up the blanket and tuck it under her chin.
But who will do that for me today?
I push them away, it is not time yet.
I do not yet need to be cared for like that.
And yet, I know it will come.
I must fight these demons.
I brave the fear.
I agonize with the decisions.
I push harder than I should.
They are watching.
Always watching for a chink in the armor, a sign of weakness.
No one else can truly understand what each of us with this disease must balance.
Even those of us who have chosen to publicly share our lives with cancer still manage to keep much of it to ourselves.
I do.
I must balance privacy and pain and catharsis.
Many people say they still can’t believe my stage 4 diagnosis.
That denial is a luxury afforded to those who are not compelled to live it.
You must believe it.
We must believe it.
I must believe it.
I have no choice.
It’s my life now.
It’s my death someday.
That noise I make as I fall asleep?
It is the sound of startled agony.
- I never have used the term “cancer-free” since it isn’t necessarily accurate. Some like to say they are cancer-free after they finish treatment for breast cancer. This is not always the case. In some cases there are residual cells, as there obviously were in me. These cells stay dormant in some people for decades– maybe the rest of your life– and hardly dormant for any time at all in other people. 30% of those who’ve had breast cancer that isn’t diagnosed orginally as stage IV will ultimately have a metastasis where the breast cancer cells leave the breast and travel to other sites in the body. Only metastatic breast cancer can kill you. Rather than “cancer-free” I have always preferred the aforementioned term NED. This stands for “no evidence of disease.” The difference is that this term acknowledges that there may be still be cancer cells in the body, but they are not currently detectable on any tests. Maybe there aren’t any. Or maybe there just aren’t enough to show up on the tests [↩]
Link to Twitter
It feels good and healthy that you are expressing these darker emotions, and I know writers will understand that giving these kinds of words air to breathe clears out your mind and heart for good living.
Your reflections are profound and allow me to consider things I didn’t know or understand. This is important to all of us, because it is likely we will walk this road ourselves one day, or care for a family member, or be there for a friend… It is preparation, comfort, and hard truth.
Thank you for sharing these truths with us.
Much love to you today and always…
Lisa, you express yourself so beautifully that one can’t help but feel the emotion. We love that about you. We don’t always need “positive,” especially when positive reeks of a forced, puppeted recitation that lacks substance. Thanks for being who you are, for being real, which only makes us care.
I’m reading.
I’m glad you’re writing, and in whatever way you need to to relate your experience. That’s how the stories should be told.
Best to you, every day.
Lisa, this post resonates so deeply for me. Thank you.
Emotional agony is so difficult to articulate, and yet you do it so well. You confront reality and your fears head on in your writing. Keep fighting those demons. I admire you.
Dear Lisa~
I was once told that there are peaks & valleys in life. Seasons in our lives. Your writings define both of those statements. And darkness. I didn’t know what darkness was, until I walked the cancer journey with my husband 13 years ago. Some of your words run parallel to those that I heard from Michael. And those that I heard from two dear girlfriends, Theresa & Judy, both with metastatic breast cancer…13 years ago…and I walk the journey today, with you and I want to walk it for you. I feel empty, and powerless over cancer~your cancer. How many breast cancer walks, runs, benefits, support groups must we have before we can have that simple four letter word: “cure.” It infuriates me that you are facing this and that as a Lovely you met on an awesome FB group, I can’t take it away or make it go away. Lisa, what can I do for you? I will pray and I do everyday, but please think about what else that I may do for you or help you with…no matter how big or how small….I want to help somehow. Peace, Love & Blessings, Laura
Thank you for continuing to write your way through that forest of emotions, Lisa.
Sending you love–
Joe
I often feel that Loss of Control is the big lesson we all have to learn, since I’ve rarely met anyone who can “let go.” It feels like all we have is our ability to try and control our situations, whatever they are.
Over 10 years ago I went through a particularly difficult emotional time and people kept telling me to “let go” and I’d say, “HOW DO YOU DO THAT, EXACTLY?” And not one person could tell me how and I think it’s because none of us really knows how. Maybe the zen masters do. But I sure as hell don’t.
Lisa, I have no adequate words for the overwhelming admiration and gratitude I feel each time I read your words. You are incredibly powerful. Thank you for sharing this wrenching journey with us. I wish you didn’t have these truths to share, but since you do, thank you for letting us in. My thoughts and prayers are with you all the time.
You continue to do an amazing job documenting your life since your stage four diagnosis. The things you choose to keep to yourself must be overwhelming. The side effects, the sadness, the loss of control and the unknown. The word “overwhelming” doesn’t even come close, I’m sure. No word could. Please know that if you do decide to share some of things you keep to yourself, I will be here to read them. Goodnight Lisa. xo
Beautifully expressed!! When I was going through breast cancer treatments, some of my older relatives were uneasy about my blogging about the darker side of my feelings. They always wanted me to put forth the “silver lining.” I’ve always felt that fighting a life-threatening illness is very individual — to each their own fighting style. I very much appreciate your writing, and how you expressed the difference between your writing style and your life style here. Best!
Lisa,
If you have to live this journey, the very least we can do is listen and learn – and in doing so, we help one another. In sharing your journey (the good and bad) you help me on my own cancer journey. I am 4 years in remission this summer. My survival statistics are much lower than yours were. As you said, none of us can know. And, regardless of a cancer diagnosis – life is precarious. Share as much as you possibly can. I will read, listen and learn.
Once again, thank you for your profound expression.
Kim
These posts have been enormously beneficial to me as I struggle to find the words to comfort my best friend who has relapsed with Acute Myeloid Leukemia. She has no match for a stem cell transplant and the aggressive chemo has left her partially deaf–among many other side effects. Because she is of Armenian heritage, her best chances for a match lie within the Armenian community. One of the (many) sad things? We momentarily cheered when the Kardashians let the world know that a cousin needs a bone marrow or stem cell transplant from an Armenian donor–oh good, we said, maybe that’ll bring more potential donors to the registry.
My friend will miss her daughter’s college graduation next month, won’t see my daughter get married in June, won’t dance at her other daughter’s wedding. Like you, she doesn’t believe in God or religion, sees no silver lining in her diagnosis, bristles when friends tell her she just has to fight or think positive thoughts. It sucks, she says. There are no other words.
If you haven’t yet signed up to be a stem cell donor (almost all transplants are now done with stem cells) please do so. It’s a simple cheek swab to get tested and to be a donor means getting hooked up to a machine for a few hours while the stem cells are extracted from your blood. Your body will manufacture new stem cells within 6 weeks. See BeTheMatch.com for more information.
Lisa,
I am a 7 year chronic myelogenous leukemia survivor who takes Gleevec on a daily basis to keep the leukemia “in check”. I find your words motivating. Yes, motivating. They motivate me to appreciate everything around me: my children, nature, my health. Because you, Lisa, are living. Your life may seem out of control, up and down, intense and loud, but most people won’t live this way in an entire lifetime. You are living every moment. Keep up the good work – you are doing a great job while doing the very best you can.
I wish you didn’t feel a need to apologize for being honest. It’s so not your job to be upbeat for us, or for us to expect you to be. I wince when i see people telling you, in essence, not to dwell on the negative.
I’m beyond grateful that you write – everything you write – honestly and from your heart. Thank you. (Again.)
I feel very lucky to be able to read your blog. Thank you for pouring so much into it.
I admire your writing and your kind, questing spirit. xo
Thank you for sharing your raw emotions and fears. It takes a brave person to bare her soul for the understanding of others. You are real like the Velveteen rabbit! I wish you weren’t in this position but I thank you for your willingness to share your inner thoughts and feelings.
I don’t always know how to respond when you write something as beautifully honest as this, but I’m so glad that you continue to share yourself here.
Dear Lisa,
I read all your posts and am always amazed at the fluidity of your writing. You share your emotions so openly. I have learned so much from you! If you keep writing (and please don’t hold back anything), I’ll keep reading, and learning. Thank you.
~ Amy
Lisa, you express yourself so well. I feel I don’t need to write because you are expressing all my feelings as a Stage IV groupie. Do keep on writing; you are so talented. xo
Thank you, you speak for me as I cling to what I know is temporary NED. I am told I am in my last year, a frantic damnation. I share you with friends and family, they will hear from you what they deny in our conversations.
Thank you again, and again, and again, and again.
Be Well, every day and all day long, Lisa.
My gosh, your writing leaves me breathless. I re-read every one of your posts multiple times because I cannot believe how you can express these feelings so eloquently! Thank you, and hugs of strength and peace are flowing to you.
Lisa thank you for your blog
Thank you for this post. It has been 9 months since my recurrence of UPSC. Aggressive, fast, and hardly any research on it. I do write a “laundry list” on my blog (as well as my feelings) and get a lot of thanks for doing so. I think people WANT to know what those whom they know who have cancer are going through, emotionally and otherwise. I never take a calm breath and some days I am so overwhelmed that I need to use Xanax…..and I hate drugs. I try not to second-guess my decision to stop chemo and radiation the second time around. But I was not living, so the choice was not all that difficult.
And I hate people teling me to be positive. Such bull! And then there are those who tell me not to do so much, as if I have all the time in the world to take it easy – can’t they understand the urgency we feel when we know our lives will be shorter than we had ever planned on?
L
J
楽天ブランドコピーは業界最高品質に挑戦!全商品はプロの目にも分からないスーパー コピーN品です。ビトンコピー,グッチコピー,エルメスコピー,シャネルコピーを初め世界中 有名なスーパーコピーブランドを激安で通販しております.patrimoinedumorvan.org.
Thanks for the very informative real life experience.