It’s true:
you’d never know.
I look great. I look healthy. I’m not gaunt or drawn or pale.
I wear makeup most days, and some days I ever wear boots with a heel on them.
I smile, I laugh.
I take a slight jog up the front hall steps when I feel like it.
I crack jokes, I roll my eyes when standing in a long line, I gossip with my friends.
I wear gloves a lot, I have to moisturize my feet and hands at least a dozen times a day.
I buff my feet, I examine them for cracks and bleeding. I stick ice packs on them when they burn from the chemo.
I can’t feel my fingertips, yet portions of them crack and peel and are painful and raw.
I can’t hold a pen or twist off a bottle cap.
I take pills all day long.
I’m swollen, I’m tired, my mind can’t stop racing.
I tell time by “on” weeks and “off” ones.
Of course the doctors understand my situation.
They know what this diagnosis means.
Even ones that have nothing to do with cancer call to check on me.
When I go to my sons’ school some of the teachers and moms cry when they see me.
“You look good,” they say. This a compliment. Sometimes they say, “You don’t look sick at all. You’d never know.”
That is shorthand for, “You don’t look like you’re dying but we know you are.”
I hear people in line to buy holiday gifts complain about the sniffly cold they have or the poor night’s sleep their child had.
They might be complaining about something more serious, but still something that can be fixed.
Time will heal what ails them.
I am not so lucky.
I am jealous.
I am jealous that this is their only medical concern.
I’m not jealous of what they wear or the car they drive or the house they live in.
I’m jealous of their health status.
I’m not in denial. This diagnosis is a nightmare.
My life will always be full of chemo and side effects and worry and monitoring and drug refills and hospital visits.
But my life will also be full of great memories, of laughter, of smiles.
There will be tears. There will be pain. There will be heartache.
But there will also be joy, and grace, and friendship.
I don’t know for how long. I don’t know if they will be in equal measure.
They say I look good. They say, “You’d never know.”
For now I know it’s true.
There will come a day when it’s not true.
And they will lie.
And I will know it.
And someday, then, I will know the end is near.
But that day is not today.
Link to Twitter
I am glad that day is not today.
And until that day is… today
I am glad
you are building great memories, laughter, smiles
I am glad you are here.
This breaks my heart. Although I don’t have cancer, both my sister an I suffer with Lupus. An invisable decease. My sister had to undergo all the chemo, and for some reason people have to always remind her of how thin she is. As if we had no mirrors in our home. I admire your strength. It’s sad at what people say at times. Bless you, your in my prayers.
Wow. This one gave me chills.
Heartbreaking and beautiful
So true, Lisa. I get the same comments. ALL THE TIME. I decided I like hearing them because if they said nothing about my looks, then there is somewhat of a confirmation I am on the way out soon! Does looking good put people in denial? I think so. My family is moving on with their lives, as they should. The only change is, they now tell me that they love me a million times a day instead of a thousand times a day.
I want them to have many days of happiness, normalcy and strong memories of me when felt good. I am the one that lives the truth. I KNOW what is down the road. Let ME be the one to think about it and prepare for it. I let them have days of not thinking about my terminal disease and believing I will be the one to beat the odds. I know the reality but it gives me comfort to hear their positive and hopeful enthusiasm that I will live a long life.
Please keep writing because you send me affirmation and a friend who can “hear” my thoughts and articulate them so well.
As always, be well, every day and all day long.
Powerful.
Lisa, this is such a poignant look in to your emotions and vulnerability. Again, thank you for opening up and sharing. Sending you a virtual hug and a smile.
This brings back memories…
Lisa, thanks for your poignant and powerful observations on the “You Look Great!” issue. When I worked in hospice/palliative care, our bereavement counselors often reported similar responses to those grieving a major loss – as if one’s outward appearance means anything at a time like that. Their explanation: it’s way more about those who are saying those words than a reflection of the fabulousness of how the bereaved person looked. Most people feel a certain awkwardness at wanting to say something, anything helpful, and also RELIEF when you don’t look as awful as they feared you might, which would make them feel even more awkward. So instead, they gush “You look GREAT!” with great enthusiasm.
In our culture, women are also socialized to focus on physical appearance, so complimenting a woman on looking good is second-nature and positive – even as patients may be inwardly mumbling: “If you only knew…” I wrote about this as it applies often to heart patients (or anybody living with an invisible chronic disease): “You look great!” And Other Things You Should Never Say to Heart Patients” – http://myheartsisters.org/2009/06/01/you-look-great/
Thanks, as always, for your honesty.
Honest, powerful, happy, sad, and blunt to the core. This gave me a chill as well.
Some people are clueless, some are petty, and some – like you – can get straight to the point.
I am glad that despite painful fingertips you share with us, so honestly and poignantly, your life.
You are beautiful because your strength and spirit, your kindness and generosity, your humor and brilliance shine always. And this will never change.
Your blog is such a gift to so many. Thank you.
It’s true: you do look beautiful despite what you are dealing with every day. I am glad for every moment of joy you and your family are experiencing, and I am grateful you are sharing all of your experiences and feelings, whatever they are, with us. Sending you love and gratitude. xo.
Keep writing Lisa. I always look forward to your posts. Truth be told I was sick last week – the kind that will go away – but I thought of you going out and about attending your kids xmas parties and such and just got myself out and about too. Not to where I would get others sick, but enough so that I felt like well if she can do it, I certainly can too. My sister said – “you want to get out more when you are sick than when you are well”. Ha – I was just making a point to myself I guess! However, I don’t think I looked as good doing it as you do! 🙂
You ARE a gift. Your words teach without preaching. You continue to infuse your tweet stream with silliness alongside “this” …. I see you, quite gracefully and with raw honesty, trying to strike a balance, to find ways to LIVE now that the rug was pulled from under you, to do exactly what you have described in this blogpost: Share the whole story.
MUCH MUCH love….
AnneMarie
Looks can be so deceiving. We really can’t *ever* judge a book by its cover. We have to read the pages. And I’m so glad you are writing them for us to read. 😉
Beautiful.
Sometimes not looking sick can make things hard too.
Traveling alone to go home for Christmas, I had to ask for help lifting my bag into the trunk of the taxi, onto the x-ray machine, onto the shuttle out to the plane.
I could feel eyes of judgement – I looked the helpless female, packing more than I can carry.
I could not pick the bag up myself so soon after surgery and risk a hernia.
http://colonology.wordpress.com/2012/12/24/i-dreamed-a-dream/
Wow this is great!
You always put everything in perspective. Nothing else to say…. XO
Thank you for sharing so honestly what you are going through. I don’t know you, but I think of you and your words of wisdom when I’m speaking with someone with cancer or another illness.
My mom “looked great” quite often during her 11 year battle (!!!) with mets. She looked good the day I was diagnosed, too. She was amazing. There is a huge Texas math and science teacher’s award in her name. She quit working less than a year before she died.
Thank you, as always, for your insight and honesty. Your blog posts are the only ones that are on my ‘must read’ list. I always learn so much.
xxx
I understand the “you look great”. When my best friend was having a biopsy to see if she had MBC I couldn’t believe it-She looked better than she had ever looked since I knew her. I met her when we were both going through primary chemo together and it seemed so crazy that she looked the healthiest she had ever looked when she got the bad news. She had gained her weight back after the chemo and her hair looked so healthy. But there she was like you trying to keep her schedule to the xeloda. I appreciate your honestly and I am so glad that you do look great now. And happily the end is not near, so for that I am grateful.
Thank you for being a beautiful guide and teacher.
I’ve been told “You look great!” more in the past 5 years than in the previous 30. Beautiful piece, Lisa. Thank you for sharing!!
Lisa, I continue to learn so much about the very minute details of our everyday lives. The little things we say, trying to be kind or friendly and often just not knowing what to say. I am so,honored to read your blog and tweets. My mind is kept in check when I look at my challenges and remember that it’s nothing, I don’t have cancer, I can do this, and I can help others. Thank you.
It sounds like you are grieving, Lisa. I can understand that. Be as well as you can and enjoy all the joys you can.
I keep looking for your tweets. And I’m always a little afraid to read your blog. You make the tears come, and help me remember that my sniffles are just a little thing.
I hope you keep doing that for a long, long time.
I’ve always hated cancer’s insidious ability to “hide”. Sending you continued strength.
Thanks for sharing – your honesty is amazing – thank you
Hahaha Janne, jeg trodde det var trekkfugler på krtdelefningane jeg så på bildet, helt til jeg fikk åpnet innlegget ditt :O)Kjempeflott foto!Klem, Anne:)
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For the first week after I was released from the hospital after a bone marrow transplant many years ago, I had to see my doctor two or three times. His greeting was always, “You look mahvelous!” After the third time I replied, “Look at me. I have no hair, am thin as a rail, can barely walk.” He did not miss a beat, “You’re right,” he said, “you look like shit.” I still smile at his honesty and now, as a recent widow, I am once again being told, “You look mahvelous!” I do! I lost weight, colored my hair and smile often in public but am most grateful to those who offer a hand or a gentle touch rather than a compliment in recognition of my fears and challenges.
When I was going through Chemo I looked a mess. Dark circles under my eyes, puffy face, swollen feet Bald and people often said WOW Alli you look super!! I would look at them like they lost their minds I looked like crap!! Now 4 years later I still get you look great, no one would ever know you were sick if it wasn’t your hair is a little thinner, you have no breasts gained a few pounds here and there but hey you still look great. Cancer wasn’t that bad was it….. You mutter under your breath …walk away…
Alli xx
A powerful post, Lisa. You are right: if you “look” good, in people’s minds you are healthy. I think so many people are uncomfortable with seeing the reality of cancer or any life-threatening illness. Your candor and writing are poignant.
thanks
I have Crohn’s Disease, and at my sickest, I had lost so much weight. Especially at the holidays everyone would comment on how good I looked, and how did I do it? It really is unpalatable to answer honestly, “Well, I shit a lot.” And I didn’t FEEL good, and I couldn’t eat all that food. Finding the balance between grace and honesty is very hard.
Beautiful post! I always feel when people tell me I look great that they are waiting for me to tell them that I’m getting better, that I’m not dying. Too bad just saying it doesn’t make it so.
Thank you for your honest message. Peace.
Wow. You are amazing!
Lisa, thank you for your amazing and always honest posts! I wish you all the best!
Dagmar
Beautiful.
This reminds me of many mental illnesses. When one of my friends — a sweet, peppy, upbeat girl — attempted suicide, everyone was shocked. “She seemed fine, we never suspected anything.” It’s hard for people to understand when a health problem — cancer, depression, what have you — doesn’t take a visible toll. Like they can gauge your condition by your appearance.
Anyway, I greatly enjoy your posts. They are poetic and honest.
Small rooms is also what is killing the listing on Carteret. Well that combined with the unrealistic ask. I believe the widest bedroom in that house has a width of 10ᰲ9″. No third floor master in that house either – that bedroom is 14×8.
I hate that sports are some strange homoerotic signalling device that men use to commune with others. If you don’t partake, you are considered funny. I come from a family of football fans. I hate football. I never watch it and I don’t share this interest with them. So I don’t join. They probably think I’m a bitch lol.
Profound and true thanks for sharing. D
Thank you for this post, Lisa! You are a beautiful person and always will be. Beauty and grace on the inside is reflected on the outside. Have you seen Angelo Merendino’s photos of his wife, Jennifer? His blog, My Wife’s Fight with Breast Cancer, tells the story of her diagnosis and illness though his amazing photography, up until her death. Even in her moments close to death, she was beautiful. It’s difficult to explain, but when someone tells me I look great, I know they may not understand what is happening to me physically. They don’t see the pain, the changes in my body, the hidden side-effects of medications–but it gives me some hope that they do see my current ability to overcome those changes with a certain amount of “cover up” effort. It won’t always be possible. A day will come when the physical deterioration of my health takes over, but I still want people to see the beauty and resilience of my spirit. Sometimes just a pleasant smile and a kind word to a stranger in passing can do that. Even now, it’s a challenge not to let my darkest, angriest side take over in times of suffering. As this disease progresses it will only become more difficult, if not impossible on some days. You, like Jennifer Merendino, appear to have that ability, or that grace (or whatever you want to call it) to continue exuding an inner beauty, and it’s a gift and inspiration to all of us who suffer with metastatic breast cancer.
[…] done it myself. Used to do it a lot, if I’m honest. My eyes were opened a while back when Lisa Adams wrote this post, which helped me realize that I was doing this, and stop (if not completely, at least more […]
I’ve been battling stage 4 prostate cancer since 2009. Had it removed, 7 weeks of radiation , pills etc. a year and a half ago the Psa started rising but the docs said I was fine because I looked fine. Sadly, months later I was on the table having two lobes or my right lung removed. It was matastisized prostate cancer. I’m continually having bone scabs with radiation, chemo pills, etc, etc. what moved me about the article above is how we must behave with our cancer. I don’t mind the fact that no one wants to talk to me about it in my family, in fact I prefer that. I never ask for anything and gave always taken care on my issues. What does bother me is that since I still look healthy, and I dont complain , my wife seems to push me and stress me to do things. I could just tell her I’m feeling like shit some days, but I keep it all inside because I think she can’t handle the truth. Thank god I have a cat I can talk to. Being 70 doesn’t help. I’m feeling like I’m a prisoner to my cancer and my house.
Thanks for listening