Thanks to Annie at PixelCurrents, Inc., I now have a “Tweets” tab on my home page. If you don’t tweet and want to see what I’m saying throughout the day, you can always check that page. Hopefully this will also help reduce the number of updates needed.
I’m on day 4 of chemo, hanging in okay. Should start feeling more effects in next 48 hours. Awful fatigue, painful/sensitive/cracking hands and feet and some other things are to come.
Sold tickets at the school carnival for two hours yesterday which was fun and normal except for the part where some people looked at me oddly or started crying when they saw me. That’s hard to take. Things like “chin up!” aren’t particularly helpful nor is “Everything happens for a reason” or “You’re only given what you can handle.” Attitude isn’t always everything. Genetics can trump all. I fight with science. My old post where I asked people to tell me the strangest thing someone said to them about cancer is getting some new comments. You can read the post and add your comments here. Some of them are jaw-dropping.
Please don’t send me suggestions of things like ozone treatments or anything like that to cure my cancer. I’m not interested. Don’t tell me about your relative or friend who died a long, painful death from this particular disease. That’s not helpful, though I’m sorry they had that experience. It’s not that I’m insensitive, but when you’re scared, what you don’t need are people telling you how bad it’s gonna get. Hearing details of a death from the condition you have — I’m not ready for that yet. I know most of what’s ahead. Trust me. And if I don’t… just let me learn it for myself. Also, “Rah-rah! You’re going to beat this! Stay strong and chin up!” doesn’t do much.
I know that people don’t know what to say. In most cases I know their hearts are in the right place. I don’t share these quotes to shame people. I share them to educate, to help teach people comments that might be interpreted by people with cancer in a particular way.
Throughout the last five years everyone always asked me, “why don’t you just move ON?” When they said “You’re done with treatment, go live your life. We think you have a long and healthy life ahead of you” I could not. I was always vigilant with my health.
I was right. And so was my oncologist. Five years doesn’t mean cured. There is a reason why I never said I was cured and THIS IS IT. I’m told I had a single digit chance of recurrence. Statistics were not on my side. I’ve always been an outlier. In the negative.
This one time, though, I am doing what I can to be an outlier in the right kind of way. Let’s hope this works and gives me lots of time.
As always, I appreciate the concern and offers of help I receive every day. I am loved, and I know it. I don’t take it for granted.
Link to Twitter
Yes, adding my hopes that this works and gives you lots of time. You don’t want to be a fighter again, I’m sure. But you’re doing what needs to be done for you and your family. Respect.
Thanks for the updates Lisa. I, like you, never feel cured and am sick and tired of being told to move on when there are things that don’t feel right. Because of you, I am going to pursue more. All that they can do is say I am whacked and they have done that before. I am just curious- did the pain in your chest wall and shoulder get ignored? Were you told things like that doesn’t happen. I just want to know more. A slut for details I guess.
So, I won’t tell you chin up or that there is a reason or any of the other stuff. I will just tell you to be where you are at all times – the good and the sucky. I am sure that having young children adds a dimension for you that is hard. I get that totally.
Anyway, again thanks for doing this. One day I might actually do mine.
Sending hugs. Sharon
“Chin up” – really? Why are people so dumb? Also, the “God doesn’t give you more than you can handle” thing is a bunch of B.S. I do believe in God but my friend Summar has what you have AND her daughter has ALL leukemia. They were diagnosed one week apart. If THAT isn’t a sure case of more than what any one person can handle, I don’t know what is.
As far as the horrendous stories – I had the same thing happen to me after my mom’s stroke. My ex-father-in-law told me, “My dad had two strokes and he never was quite the same after.” Gee, um, thanks for that uplifting story??
Thank you for sharing YOUR story here.
Lisa, have they given you an info sheet with suggestions on how to care for your feet? Moisturiser and socks at night and anytime you have your feet up. The sore spots (PPE) usually hit the areas with hardened skin. We recommend having a pedicure before starting tx usually to get rid of any rough areas…
Biology over staging is the difficult truth too many don’t understand. That’s what I want to shout at people who say silly thoughtless things to young women with metastatic cancer. There is nothing ever wrong with “I’m sorry,” or even “I care.” Better yet, “I don’t have any idea what you’re going through” would probably be an honest, welcome truth.
I was glad to see you were able to do something normal. Maybe next time the thoughtless will keep useless sputtering to themselves.
Be an outlier:)
xxoo
Thank you for the update. Trying to find the right words is difficult. The thoughts are there though.
You are loved, Dear Lisa.
Glad you were able to get out & do the tkt thing for the school festival. I’m so sorry you’re having to go through this – for whatever it’s worth, you’ve got TONS of good thoughts coming your way, all of us hoping you end up on the other side of the curve! Thanks for the update.
Love you.
Yikes.
Lisa. I’m with you. When I say “I understand”….I really do. I’m going through my own cancer drama on this side of the fence. But honestly, sometimes – people just don’t know what to say. I try my best to be the “BIGGER” person in these instances. I don’t want anyone feeling paranoid on the “to say” and “not to say” proverbial list. I find that once I start doing that, people tend to push away and not say anything at all in fear of offending.
Don’t stop venting though. Touchy subject for me personally.
Lisa,
I love the way you explain so patiently yet so forthrightly things that should not need to be explained. I wish I was the praying sort because I’d be using them all to make that outlier wish of yours come true.
Michelle (mamabook)
You are loved from afar.
Thanks for the update, Lisa – and for letting the insensitive ones know to just keep their mouths shut. Offering love, support, and hope for the best.
Lisa, I remember reading that post last February and it reminded me why so many of us find each other and bond — some without having met in person. I always disliked the positivity message shoved down people’s throats in challenging situations medical or otherwise as well as many of the common metaphors people use to dance around illness. I even wrestle with the word ‘survivor’ because I feel it is exclusionary and tempts fate because all of us live with a risk of recurrence, double digit, or as you point out, single digit. I remember having this conversation in my support group very often, especially when a new member joined our ranks. They were rattled enough grasping their diagnosis and wrapping their heads around treatment, let alone the “darndest things” people would say. I hate that you have to deal with such insensitivity a second time and that there are people who still haven’t gotten the message. And for anyone looking to you to provide reassurance for them right now or meet their emotional needs (aside from your children, obviously!) — they need to buy a clue. This isn’t about them and they owe it to you to keep it together. I truly believe your words will make a difference as we all share them in the same spirit of educating. I hope you know how much your authenticity and candid observations are treasured by everyone you touch. Much love to you. xxo
Lisa, my sisters and i are following your posts, and this one I can particularly relate to. I have always felt uncomfortable making the kinds of “helpful” comments you describe. And I have received them myself. I wish there was a great way of offering verbal support and helpfulness to someone with cancer or any serious illness. But its hard and I appreciate your matter of fact way to explain this to everyone. I can only offer you my support, wish you the best possible outcome, whatever that may be.
I just want to remind you that “we” …. the collective social media “we” of the blog/twitter world are reeling from what has happened to you. I am speaking for all when I say that we are here, ready to listen, to offer a shoulder, to steady your step, to tell a joke if that’s what you need.
You are admired by so many. You are loved by many more. I, for one, took delight in reading the tweets about baseball teams and other “normal stuff” …. and in one fell swoop, all of that fell by the wayside as the collective breath was sucked out of cyberspace when you typed those words that none of us wanted to read.
I shed tears for you, Lisa. I want you to know that. I wish I could offer more than “I am so sorry this has happened to you” but that’s all I have for now.
Hugs and love,
AnneMarie
Lisa,
I went from Stage 1 breast cancer in 2010 to Stage IV metastatic breast cancer in 2012. I understand your feelings. You express yourself perfectly. I went from very angry to possibly accepting this. My mantra is “It is what it is.” I cannot change this. I am hopeful for many more years but I am also pragmatic. I am not a person of faith but I believe in the human spirit and it’s strong desire to live. I am remaining hopeful for both of us.
Be well.
Good luck in all you do. Your attitude is amazing.
There was a person who commented about believing in a “god”. Believing in a “god” requires to believe in a message or a scripture. That includes the BS behind “Everything happens for a reason” and “You’re never given more than you can handle” because “He loves you”. No thank you. Lisa has re-enforced the other side of this.
Fight on, my dear.
I was following you pretty religiously up until a few months ago. Busy with work, kids, etc. You came to my mind today as I stare at a radiology report with a BI-RAD assessment of 4C and a biopsy appointment not until Monday. I’m freaking out a little and thought of you. So I came back today only to be pissed off that you are again battling this insidious disease. I’m sorry for what you are going through. I was hoping to get some advice from you on how to make it through this limbo stage I’m in. I totally understand you not providing such advice and please know you are in my thoughts and prayers. I will have to resurrect my lame exercise blog and start really documenting what I hope to be a short and uneventful journey. All the best to you and your family!
I’m back to being a once a day follower!!
Cat
Oh Lisa, I have written ALL those things at some point on this journey. It IS hard to know what you can say to help…but usually asking how you can help does the trick. So, you are in my thoughts, and my prayers, and even though I’m a continent away, Please let me know if there is every anything I can do to help!