Lisa Bonchek Adams

The car has always been a place of refuge for me.

The shower, too.

Water to rejuvenate

Clearing away the old,

Ready for a new day ahead.

The moment of awakening is significant.

I have learned quickly what the next few hours will be.

I try to give a nurse a complete report but I encounter one problem immediately.

I really cannot type accurately.

My body shakes, my hips cry out in bony futile gasps. I gather up  my pump cords, release myself from the wall’s grip.

I walk, counter-clockwise around the nurse’s station with a vengeance, trying to push the pain and discomfort away.

……………………………………..

I am Angry at this morning and that which has me here.

The tears arrive.

The radiation pain seems to be on the way in.

How long with it last? Does that mean it’s working? I and everyone else ask.

“I don’t know” is the way to do it. I say it aloud to the dark, embarrassed after the first word that I realize I am alone in the room.

I hear my voice, speaking to someone not present.

I can’t help but cry as I push the pole.

The movement makes it better. It reminds me of being carefree on a summer day, wind in my hair from the sunroof, feeling the sun on my face.

I think of my friends readying their homes for the day before work and school.

I can feel the radiation, where it burns, or at least the spots where tumors are trying to escape their home,

where they try to find new lands to conquer in a cat and mouse inside my body.

It doesn’t matter what stinking metaphor you use for it;  in this case, all roads lead to Hell.

I contemplate eyeliner while the nurse stands, patiently waiting to see how I’ve done overnight.

…. But there is no one there.

I focus very hard on the tasks at hand: morning medicine most especially.

I start to tell my nurse that I weighed myself already today. Or yesterday. Or two days ago. But I can’t remember now. And so I remain mum.

In each moment my mind leaves. I don’t know where it goes. But in those gaps which feel like seconds, minutes have gone by.

The tea is divine, hot silky relief from the cold my body cannot push out.

I realize whatever it is I thought I could accomplish at the keyboard won’t happen once again.

I can’t concentrate. I find gibberish on the page. It takes hours to do a few moment’s work.

Extra time lost.

Time lost.

My precious time.

I stay committed to sitting up, bedside, fighting the urge to recline.

I listen to music trying to keep myself alert.

I think about my children, wondering what each is doing…

I realize today I am too foggy from medication.

I won’t be able to do much for a while. I am too busy talking to people that are not there.

I will rest, let the pain calm, let my head settle.

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Once again Facebook games about breast cancer are making the rounds now that it is October. I posted this last year and got some flack from people who thought anything that “raised awareness” about breast cancer was good and couldn’t understand why I am critical of these messages.

My point is that this isn’t awareness.

There probably isn’t anyone on Facebook who doesn’t know that breast cancer exists. But there certainly is a lot of myth-busting to be done. This is not how to do it. Topics that do need attention include male breast cancer, the underfunding of metastatic research (30% of people with breast cancer will eventually have metastases yet less than 5% of breast cancer funding overall goes to metastatic research), the fact that for many breast cancers 5 years in remission does not mean you’re free from risk of recurrence, not all breast cancer presents with a lump (inflammatory breast cancer)… the list goes on and on.

There’s a lot of work to be done educating. Education is awareness, these Facebook posts are not.

A friend asked me, “What can I do to help? I can’t donate money to your research fund but would like some ideas on things I could do instead.” What a great question. Rather than post these messages on your Facebook page here are a few easy ideas:

1. Make sure you are properly vaccinated from vaccine-preventable illnesses. This includes your family (kids and your parents if applicable), friends, and anyone else you can get involved (nag). Boosters like those for pertussis are very important. Get your annual flu shot. People over the age of 65 and some others at high risk should also talk to doctors about the pneumonia vaccine.

2. If eligible, donate blood and platelets. These products are needed by cancer patients constantly.

3. If eligible, get tested to be a bone marrow donor. Go to BeTheMatch.com to see the requirements. The initial registry just requires a cheek swab. It’s easy as can be.

4. Read blogs/follow tweets by people living with cancer. I think understanding the day to day lives of those of us living with it is a great way to truly become more aware. It’s one of the reasons I spend so much time writing here. I try to bring you the science, the experience, the thoughts of a mother trying to cope with raising a family and managing an terminal diagnosis.

Now on to the Facebook posts… here is a slightly modified version of the post from last year. You can go back to the original if you want to see comments made then.

……………………………

I don’t usually rant, but something has me steaming. Today the following exact message appeared in my Facebook inbox:

One version I received yesterday says this:

………………………

I’m going to keep my reaction short. I’m hoping writing something down like this will allow people who are as infuriated as I am with these silly requests to have something to react with.

First, I give you permission to ignore this crap. Better yet, write back to the people who have shared it. Let’s do some real awareness here.

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

Let’s do a piece of education right here. The status update says “only send this to your girly friends.” Men get breast cancer too. Men are also the husbands, fathers, sons, brothers, and some of the friends, coworkers, nurses, and doctors who care for and are left grieving for people (men and women) who die of breast cancer. We should not exclude them from ANY discussion of cancer.

Just because it says it’s about breast cancer awareness doesn’t mean you have to agree. Go ahead. Ignore it. Or write back and tell them why you don’t want to be included in these things anymore. Another blogger, Susan Niebur, wrote about her take here. She was an astrophysicist, by the way. She died of metastatic breast cancer.

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the I’ll bet most of my friends won’t share this post attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Education underlies awareness. To even call something a game and honestly believe it’s doing anything to help any aspect of this disease is delusional.

And why would awareness be correlated with something being done secretly?

I think that those of us who have had breast cancer have an obligation to speak out if we disagree with these posts. People look to us to see how we react. If we not only read these updates but share them, it does constitute endorsement. It says we agree. It says it’s okay to think of breast cancer awareness this way.

I say: count me out of these Facebook games.
I have stage 4 breast cancer and it is no game to me.

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For those who wanted to hear my interview on Doctor Radio and weren’t able to listen on Wednesday, here is a link to a downloadable audio file of the one hour show. Thanks to my brother, Mark, for doing this. That show leads directly into today’s discussion.

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I always get some heat about posting essays about the stupid things people say to those with cancer.

I know people come here expecting to learn. That’s what I’m trying to do: educate. People inevitably vary in their responses to what people say. After all, responses to books, movies, and comedians are all over the place.

Occasionally people will get defensive and say, “Well, I have said one of those ‘stupid’ things and I meant well.” I am going to take an unpopular stance and say that meaning well isn’t always enough.

Maybe the listener is scared. Maybe they’ve had cancer or a family member with it. Maybe they are just uncomfortable talking about illness and death. It’s important to remember: it’s not about you. It’s about the person with the illness. If you are a friend you will need to get over your discomfort or get out of the way. What you don’t want is for the ill person to have to be consoling the listener or trying to minimize the seriousness of what they’re feeling.

Do not turn it back on you, or when you had cancer, or when your child or mother or 2nd grade teacher did. It’s not necessarily the same. Types of cancer are not the same. Even subtypes of cancer are not the same. Now, I’m not saying you should always avoid interjecting something to let the other person know that you’ve had experience with cancer. But the first thing out of your mouth shouldn’t be to connect it to someone else and what their outcome was, good or bad.

Different diseases cannot be compared. Different cases of the same disease cannot necessarily be compared, either. Chiming in with, “Oh, my second cousin’s boyfriend’s dog walker had breast cancer” doesn’t help a person, especially if it’s followed by “She suffered in pain for a long time and died” (yes, this gets said more often than you can imagine). The other end of the spectrum is, “Oh I know someone who had that. They’re fine now.” (Okay, but some people are not fine… should they be jealous? Feel inadequate?) Someone told me in response to learning I had metastatic breast cancer that his wife “had a bit of that last year.”

If you had a coworker who worked the entire time she had treatment, that’s great. We are happy for her, truly. But that bears no relation to how someone else can handle their surgeries, treatments, and side effects. So while you might think it’s supportive (in your mind you’re saying, “See, I’m being supportive and reassuring her that it might not be as bad as she thinks”) what that person may reasonably hear is, “Wow, if you have to take time off work you are weak, or at least not as strong as my coworker was.”

What would be something better to say to a coworker? How about “Please tell me how I can help you during this time. Is there something at work I can do to make it easier for you? I hope you know I would like to help if I can. If you can’t think of anything now, that’s okay. Just let me know if/when you do. I’ll ask again to make sure you’re getting the help you might need.”

Asking “Has this been a good week or bad week for you?” seems like a good bet to ask someone you might not be best friends with. It shows concern and they can be as detailed as they want in their response.

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A few weeks ago someone tweeted to me, “As a cancer survivor myself, I know that half the battle is the mindset. Be determined to defeat cancer and you will!” Then followed that one up with “I meant that if we believe we can win against it, we will.”

Comments about someone’s attitude are definite don’ts. Does that mean those who die every day are responsible for their deaths because they are weak-minded? If it were as easy to defeat cancer as mindset, people would not die of it by the thousands every day.

Similarly, comments about appearance while rampant, can strike the wrong chord. I can’t tell you how many times people find out about my stage 4 diagnosis and say, “But you LOOK just fine!” The two are not always correlated, most especially at the time of diagnosis. This is why many people don’t know they have cancer and are completely taken by surprise. When people tell me “You look great!” I know they mean something nice by it. But the rest of that comment, the dark underbelly, is “You don’t look like you’re dying” or in some ways more insidious, “If you look that good you can’t possibly be that sick/it can’t be that serious.”

Don’t say you know exactly how someone feels if you don’t have evidence to back that up. Being a compassionate person and caring friend does not require personal experience that is identical to what the person is going through. Let me say that again, a different way: in my opinion you don’t need to have had cancer to be a caring friend. It might help you to be a good friend if you have had cancer, but it’s no guarantee. People “do” cancer differently. While the experience might have similarities, it doesn’t mean we will necessarily agree on how to deal with it. Part of what I try to do here is level the playing field. I try to bring you information and advice you can use so that you will know more about helping than you did before.

Don’t tell them that their science-based treatments are bunk and what they really need to be doing is just changing their diet, breathing pure oxygen, or relieving their constipation to be cured of cancer. Do not tell someone who is in the middle of treatment that chemotherapy is a waste of time. You may think your suggestions of supplements/vitamins/tea are harmless, however, there are serious interactions that can dull the effectiveness of chemotherapy and other treatments. Not all lotions are good to use during radiation treatment. Not all vitamins are good additions.

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I like what @travisbhartwell tweeted to me: “Mindset changes the days you have, not the number of days you have.”

The worst thing that can happen is that friends disappear. This is happening to me in spades. It may be that they are afraid they’ll say the “wrong” thing and end up being written about. But I think it also has to do with the fact that death and illness make people uncomfortable. I represent their fears. People who should be in touch with me at least every week or two (because that is how often we saw each other before) have just dropped away.

That said, there are so many people in my life who are so wonderful. Who offer to help, who make it easy to accept it. Who send notes or emails of support months after the initial shock. Who keep asking what they can do. Who pointedly give ways they can help and ask if I could use it.

………………………………..

One thing I think is very important is to always say to someone who is ill or has experienced a death in the family: do not write me a thank you note for this. Do not feel the need to answer this email. Do not feel the need to call me back.

If you live near the person ask them, “Would it be helpful if I texted you before I run errands so that I can pick something up for you?” Texting and email help because talking on the phone is almost always too much of an ordeal and/or inconvenient. I have friends who email me at the beginning of the week to say, “I’ll be at the grocery store, the drugstore, and the post office this week. Can I do anything there for you?” Some will text on the spur of the moment, “Running to Costco. Need anything?” These are invaluable offers.

If you have no knowledge of what information you are being told, admit it. People with serious illnesses do not expect you to know everything about their new diagnosis. They are probably learning a lot of information in a short period of time and may not even know the details of their diagnosis and treatment. They don’t expect you to have the knowledge but you need a way to connect. I recommend when someone tells you about a diagnosis you don’t know much/anything about you say, “I don’t know anything about what that diagnosis means. Would you mind telling me about it, and what it means for you?”

How is it affecting your day-to-day life and what part of that can I help you with?

I’m so sorry to hear that.

What is the worst part of this for you and how can I help make that a bit easier for you?

If your friend is dying or has a relative who is, and they refer to the death or how difficult treatment/daily life is, don’t brush it off, dismiss it, or say, “Oh, you’re not going to die. You’ll be fine. It will all be okay. Things will work out.” Saying this to someone with stage 4 cancer comes across as dismissive of the seriousness of their diagnosis.

If the listener says, “Oh, that’s depressing, let’s not talk about dying,” it can isolate the person who is ill, making them feel they should not be thinking about what is a very real concern or outcome. As Julie Klam points out in her book Friendkeeping, acknowledging someone’s wishes should be paramount. She tells the story of her mother and her mother’s friend Patty who was dying of cancer. Patty wanted to give Julie’s mom a pendant. Rather than gratefully accepting it, Julie’s mom insisted Patty would wear it again, that she would get better. Instead, she died a few days later. Years later when recounting the story with regret, Julie’s mom said, “She knew she was dying. It probably would’ve been comforting to her for me to acknowledge that… I was just afraid that she had some small glimmer of hope. I just didn’t know.” I would bet that if that same scenario happened again, Julie’s mom would act differently.

Later in the chapter Julie recounts being a friend to someone who had to terminate a pregnancy. She asks Julie a question that continues to haunt me: “Will anything ever be good again?” It echoes in my mind now: Will anything ever be good again? Will anything ever be good again?

The truth of the matter is that for some it will. For some people, it won’t.

Check in with your friend intermittently. Give her reminders that she is not forgotten even if she is not out in public. I love getting cards or texts or emails that tell me what my friends are up to. As I write this my friend Kathleen texted me to say she was eating at one of our favorite places. “I miss your company” she said. How can you not love that?

I love written notes. I save my favorites. When I’m having a bad day there is something about pulling out a card, seeing handwriting, reading a message. It’s just more personal than seeing it on a screen. Of course texts and emails are great for frequent check-ins, but for a special message? Real paper can’t be beat.

Other winners to me are notes that remind me of a funny experience a friend and I had, a favorite memory. Many people know I love my garden and flowers. They will send me a pretty card and tell me what they saw at the farmer’s market or in their own garden or what they’re looking forward to about Spring. Sometimes they will tell me about being on vacation and how they thought of me when they saw the water or the tropical plants and they remembered a trip I’d blogged about.

Some send a favorite poem or story or memory. I like those. I don’t like religious quotations or cards that focus on people praying for me or hoping for a miracle. That assumes I am a religious person (I am not and I don’t believe in miracles). I think cards should focus on the person— the connection to that person, your friendship, not what types of religious comfort or explanation the writer endorses.

One Twitter friend, Neil Shurley, wrote me a song titled “We Love You, Lisa,” and then made a video with people holding up signs that say those same words. I still watch it. I always cry. It’s one of my favorite things anyone has ever done for me. This, from what most people would term a stranger. Another friend, Nichole, took photographs that people sent her, combined them with poems and sayings and turned them into a photo book for me. When I’m down it’s another thing I reach for to feel support.

Does the person who is ill have children? If so, you can do what one room mom did for me this year: For school events Lizzie always asked if I felt well enough to join on any party or field trip. She offered rides to school performances. When I could not attend, she (and other moms) took photos and videos and sent them to me… without being asked. My friend Zerlina put together a playdate calendar and a dozen moms signed up in rotation to have Tristan over three times a week for playdates for the past six months. This was especially helpful. Sometimes I’ve been well enough to say we would host the playdate here. But knowing there was fun built in with his friends was a relief to me.

Finally, I always love my mother’s suggestion for one of the best questions you can ask in any situation whether it be posed to a friend, a spouse, a child, a coworker. When someone comes to you with a complaint, a problem, or a rant asking the simple question, “Do you just want me to listen or do you want my advice?” is a wonderful way to be supportive. Sometimes a friend just needs to cry and vent, no advice wanted. By asking you will show sensitivity to the distinction. This is what I mean by not needing to have had the same experience to be a good friend. Listening matters. It’s free, and all you have to do is offer (and follow through).

And if you have a serious illness how do you respond when someone asks you how you are? If you don’t want to answer in detail, one suggestion is to say, “There are good days and bad days. Today is a … day.” This response is also a good one after the death of a loved one. If you are having a good day it allows you to acknowledge they’re not all like that. If you’re having a bad day it expresses that you know they won’t all be like that, either.

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I think we all like to hear that we matter, that we make a difference, that we are loved. In the end, you can never go wrong by telling (or writing) someone what they mean to you, what you like about them, and what you enjoy most about being with them. This is the essence of friendship to me. Some days you need a serious chat. Some days you need a friend to be silly with. Some days you need a friend to go shopping and have a gossip session with and try to put cancer in the back seat for a few hours. There are many ways to be supportive.

My dear friend Cathy texts me every morning to wish me a good day and asks, “How can I help you today?” I most certainly don’t expect that every friend should do this. But boy, it means a lot that she does. I rarely need something these days. But I will someday. And when I do, I know she’ll be there for me.

I have so many people in my world who care. I know how fortunate I am. I hope that some of these suggestions will be helpful and I am sure you will find others as readers comment on the post. You don’t need to have many things to say… a few good options will do.

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I hope you all have a good weekend, we are starting to feel Spring here and boy, does it feel good!

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Everything changes with a diagnosis of Stage 4 cancer. I don’t really think that’s an overstatement. My relationship with my oncologists has, by nature, changed as well. With stage 4 one of the things that’s especially important is good communication between physician and patient. It always is, but now two of the topics that are imperative to review at each meeting are side effects of medications/chemo and symptoms I’m having (especially pain).

I have always had two oncologists’ input on my treatment since my original diagnosis of stage II breast cancer in December of 2006. Even through the more than five years of remission, I continued meeting with them about my adjuvant therapy.1

Immediately after I was diagnosed in October with stage IV my oncologists began talking about finding a balance between length of life and quality of life. These two aspects of my life would have to be constantly juggled. The art of medicine and its role in treating cancer suddenly has become crystal clear while the science of decision-making often remains blurred.

For many people it is often reassuring to hear there is a plan, a prescribed protocol. There is a type of comfort in being diagnosed with a disease and being told there are defined steps you need to take. With metastatic cancer it’s not crystal clear. Patients must often help decide what is right for them.

I was offered options about which treatment to try first: a traditional chemo or an anti-hormonal combination. One would attack cancer cells, but also attack the healthy cells in my body. The other would aim to “starve” the cancer of some of its fuel (hormones). One important positive feature about my cancer is that there are choices about how to try to keep it in check. This hopefully will equate to having stable disease for a while so I can live longer. Some types of cancer do not respond to certain therapies and therefore there are fewer options in treating them.

When I went to see my medical oncologist at Sloan Kettering, this week she pulled the chair over and sat only inches from me. I was on the exam table, in the modest red and peach Seersucker bathrobe Sloan uses for their exam gowns. We sat and talked about research and trials and side effects and my blog and my family. She gets emotional sometimes when we talk about the current situation. So do I.

Then Dr. Chau Dang said something that I will always remember. She said that many doctors start to distance themselves from their patients as the patients get sicker and closer to death. She said this is their coping mechanism. Of course I couldn’t help but wonder if the same process is what is behind some of my friends disappearing and rarely contacting me anymore. Some physicians, she said, seem to back away, needing emotional distance not to be weakened each and every time a patient dies.

In contrast, my doctor feels this is precisely the time in her relationship with her patients to embrace them, bring them close, provide them care and comfort as much as possible. It’s important to remember, she always says, that this isn’t a case, this is a life. A person with friends and families who love them. Death happens for all of us. It’s her role to do what she can to prolong life, and when that can’t be done anymore, it’s important to still care for the person, not just treat the disease.

The nature of the doctor-patient relationship changes over the course of illness. Perhaps nowhere is that truer than in oncology. I’ve always been a partner in my care, it’s the only way I know how to be. It’s my life, after all, and the decisions we make as a team are ones I do not want to regret because I gave up control or didn’t have adequate information. However, I also accept that treating cancer is not an exact science.

Some patients do not want to have options. They want their physician to pick the course of treatment that seems best matched for the patient and proceed. A patient sometimes doesn’t want choices; he or she wants the doctor to do the sifting and prescribing. This works for many people, and takes the responsibility off the patient. There is mental comfort in that approach, too. I can understand why some people make that choice.

One of the things that is difficult in being a true participant in your own care is that while you get the satisfaction of partial control, you also must accept responsibility if/when things go wrong. This is part of the deal.

Some things just are.
Some things just happen, even when you do all you can.
I have accepted this jagged truth all along.
But I think some people never do.

1. adjuvant therapy is additional treatment in addition to your main course of treatment designed to minimize your chance of a recurrence. It often includes radiation and/or hormonal therapy like Tamoxifen or Arimidex in certain patients [↩]

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“Is it terminal?”
“What’s your prognosis?”
“It could be worse, you know.”
“Everything happens for a reason.”
“It’s all part of a larger plan.”

“You’re only given what you can handle.”

“All you need to do is think positive.”

“Half the battle is the mindset. Be determined to beat cancer and you will.”
“Now that you’ve been through this you’re due for some good things to happen.”
“I’m sure it’s fine/I’m sure it’s nothing.”

“Well, you’ve been needing a vacation for a while and now [during chemo] you get to lie around and read books all day. What could be better?”

“Well, do they think [the chemo] is going to do any good?”

“At least it’s not on your face where everyone could see the scars, besides you don’t really need your breasts anyway.”

“A new-agey friend asked me if I had been really angry about anything 7 years before my diagnosis that I had repressed. (What had I done to cause my DCIS?)”

“I was advised to write a letter to my husband detailing how much I loved him so he could have something when I died. [My husband]  was standing next to me as I was being given this little chestnut.”

“One said to me the day after my malignant melanoma diagnosis: ‘Maybe this will help you evaluate all the things you need to change in your life.’ ”

“Last year I had part of my cervix removed surgically for PRE-cancerous cell growth. I was at home recovering from surgery and still had days to await the results of whether or not I had clear margins, etc. Those days that drag on and you just wonder and hope. My mother in law came over with dinner (nice) and then proceeded to stand there and tell me about every person she knew with cancer, how they died, and how their families went on.”

“When my mother was diagnosed with breast cancer, I was a wreck. My (now ex) husband got tired of it really fast and made a rule to confine my sadness to one day per week: “you are only allowed to cry about this on Fridays.” If I felt like I absolutely had to cry Sat-Thur, I had to do it in private.”

“The worst thing said to me was right before I was to have a new lump checked out. I was a 7 yr breast cancer survivor at the time, with 3 children ranging from 14-8 yrs old. When I told a pastor’s wife I was worried about the lump, but was most worried about my children if I got bad news, she responded, ‘Oh, they will get over it. You’d be surprised how quickly. I know I got over my dad dying in a year, and I was about their age.’ ”

“Gosh, I thought chemo was supposed to make you lose weight”

“Nearly every person I told about my mother’s death felt the need to tell me about some relative of theirs that had passed away and how awful their death was.”

“The very stupidest thing was said to me recently, a few months after treatment ended for a recurrrence. I was out to eat with my youngest son, now 16, and ran into an acquaintance. She said she’d given it a lot of thought, and wanted me to know that there were “perks” to dying at early age, in case I did. I’m 47. (and feeling fine by the way, and had just told her so.) But she proceeded to tell me 3 of “the perks” if I were to die early. One “perk” was that I wouldn’t be the grieving spouse, another was that I had already parented “through the fun years” and wouldn’t have to see my kids make bad life choices, and the other one….oh, I wouldn’t have the aches n pains that came with old age like she was experiencing. She was “sincere” and had “thought about it,” and is a nurse!! Just blew my mind.”

1. Random stranger on the street: Do you have cancer? Me: Yes. RS: How long do you have? Me: –
2. On telling peripheral people (e.g. hairdresser, or friend of a friend) of my diagnosis, they proceed to tell you that their uncle/cousin/friend’s mother had cancer and then that they died. I guess they are trying to make a connection and it’s the first thing that pops into their head, but I really did not want to hear about death at that time.
3. An email from a friend of a friend (a homeopath) telling me that breast cancer is caused my a negative relationship with your own mother. This is definitely not the case!
4. People asking me if I knew how I got my cancer (and then offering me something to read about some “natural” therapy they have heard about or are selling).
5. I fully got sick of hearing the words “positive” and “strong”; so much so that I banned my family and friends from saying them.

“People choose their sicknesses. He chose to have cancer by not managing his negative energy and he chose to die by not fighting.”

“Someone I know has pancreatic cancer. She didn’t suffer too many adverse effects throughout chemo which was fortunate for her. Her daughter, who knows I went through chemo all a year earlier, made a comment that her mother must have a particularly strong constitution because she didn’t have trouble with side effects. Ya, unlike like the rest of us weak wussies who who were knocked out by chemo! I knew that she was grasping at any tiny sign that her mom might experience a full recovery so I kept my mouth shut.”

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So what DO you say? A post with suggestions for what to say/do appears here:  “What to say to someone with cancer/how to be a friend to someone with a serious illness.”

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Today’s brand new post is over at Huffington Post. You can click here to read it: The Hardest Conversation.

This piece is about the conversation I had with Paige after my diagnosis in October of Stage 4 breast cancer. As the oldest of my three children, she has many questions that the younger children don’t. I wrote the piece back in October but kept it to myself.

I waited until I felt she was ready to read it and give her approval before I published it. I would not publish a piece like this without her permission. She said, “You should publish that, Mama.” I think she knows it might help someone else. We both hope it will.

I’ll be back with an update in a day or two. I’m back on an increased dose of chemo this week and did try switching to the new bone=strengthening drug.

Thanks for all of your comments, emails, and support!

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I loved the book The Age of Miracles by Karen Thompson Walker. I had the pleasure of meeting the author a few months ago. In the book, the earth’s rotation starts to slow. The days stretch longer with obvious consequences on daily life with some not-so-obvious effects on personal lives. I found the book immensely readable, creative, and thought-provoking (My teen daughter thoroughly enjoyed it too. It’s absolutely appropriate for that age group).

My own life has suddenly taken an opposite turn. It feels as if the world has sped up. The days are flying by. There just isn’t enough time.

It’s only been four days since we had an inkling from my oncologist that I had metastatic breast cancer, three days since I have known for sure. And now, in the middle of the night, it’s time I long for. The Earth is spinning so fast… how can it be I’ve been awake for two hours? Have I spent them wisely? What else could I be doing with those days, minutes, seconds?

I’ve done so much already.

I wanted to share a few ideas on things I’ve done already, many of them pertaining to my children. In the dizzying days after a metastatic cancer diagnosis there is so much emotion that it might be hard to think about what to do. You feel helpless. In some ways you are helpless until you get more information. But in the meantime here are some tips about what you can do.

I understand that not all of my readers have children. But for those of us who do, helping children adjust to this news is vital. It not only helps the children but can help relieve some associated stress for the parent.

• Don’t share your news until you know for sure what your particular diagnosis is. I don’t think you need to know your exact treatment; that takes time. But even knowing a general range of what might be used is helpful. If you have had cancer before, children will usually want to know if you will be doing the same thing (especially if it has to do with hair loss) or if it will be different.
• In my case I needed to have a mediastinoscopy with biopsy after my status was confirmed. It’s an outpatient surgery that inserts a camera through an incision in your neck to grab some lymph nodes for biopsy. I decided to focus on that concrete event mostly… it’s something children can wrap their heads around… Mom is going to the hospital (not uncommon in my household), having a small operation, will be back tomorrow night. I explained the cancer, the metastasis, and answered lots of questions, but I think the “one step at a time” was more easily tangible with the surgery as the immediate hurdle. If you will need an overnight stay for your particular surgery I think it’s best not to spring that news on children if possible. An overnight absence is best with a few days’ notice. Children, in my experience, are usually a bit clingy after bad news and that would provide the opportunity for follow-up questions and reassurance.
• Be sure you understand your diagnosis. Explain what words mean to children and to your friends. There are many misunderstandings about cancer and stage IV cancer. The word “terminal” might be scary. Stage IV cancer is not the same diagnosis in different diseases. Prognoses vary and some types of metastatic cancer can be slow-growing or respond well to treatment, allowing years of life.
• I think the phrase “it’s not curable but it is treatable” is important to teach and use.
• Wait to share your news publicly until after you have told your children (except with a few close friends you can trust to keep the information to themselves. This determination may not be as easy as it sounds). This also gives you a day or two to begin adjusting to the news so that when you do discuss it with your children you might have emotions a little more in check.
• As soon as you tell your children, be sure to tell adults who work with your children on a regular basis. If your children have learned the news, by the time they go to school, lessons, and sports, their teachers need to know. Email coaches, teachers, school administration, guidance counselors, school psychologists, and music teachers. Grief in children is complicated and it’s important that all of the adults know and can be on the lookout for odd behavior. Also, they need to be understanding if things don’t seem to be running as smoothly at home or a child seems tired or preoccupied. Two-way communication is key. Adults need to know they have the opportunity to bring any problems they see to your attention easily. Encourage them to do so, whether what they observe is positive or negative.
• Use counselors, especially school psychologists. My first call yesterday morning before I left for surgery was to reach the high school psychologist. Because Paige is in a new school (high school) I didn’t even know which person it would be. Even though it was only 9 in the morning when I called, the psychologist had already received my email (forwarded from the guidance department to the appropriate person) and had a plan in place to find my daughter during 2nd period study hall. She was able to introduce herself, talk to my daughter, and let her know how to get in touch with her as needed. They set up an appointment to meet to talk more in depth after their initial chat. Paige likes her, feels comfortable with her. This resource is invaluable. After my mother-in-law was killed in a car crash 3 years ago, the middle school guidance counselor became a refuge for Paige. When she was sad, distracted, needed a place to go have a good cry or talk, she had a safe place with an adult to help her. These individuals are part of my team. We are working together and it’s so important to use them.
•  I have always felt that it’s important to be honest about a diagnosis; that is, open and public. I know this doesn’t work for everyone. The downsides of being public about a diagnosis are outweighed by the negative pressure for children if they have to keep a secret and bury feelings about such a serious topic. Children take their lead from you. If you are up front and comfortable discussing it, your children will learn to be that way, too.
• Call your other medical professionals and tell them of your diagnosis. Not only will they want to know because they care, but there may be instances where treatments may need to be examined or medications evaluated more often (for example, my endocrinologist wants to monitor my thyroid hormone levels more often than usual). They are all part of your team. They want to know. Many of the most touching and heartfelt phone calls I got were from my doctors this week. They cried with me, gave me information, offers of help, and caring. It also means if you have a situation when you need urgent medical care their office will already be aware of the situation and will likely respond more quickly to get you in to see the doctor.
• A carefully worded email is invaluable. Accurate information is documented so people don’t spread rumors. Friends can refer back to it if needed without asking you. They can forward it to other individuals easily, as can you. Choose your words carefully. The words you use will be repeated so make sure the email says what you want it to say to friends and relatives. The right explanation is much more helpful than a quick one sentence Facebook status update. People will have questions, and you can head many of them off by including that in your email (if you so desire).

I will be posting more tips about what I’m doing in the weeks and months ahead. Hopefully they will help you or someone you care about. There is so much you can’t control during this time, and that’s unnerving. Even taking steps like these can give you concrete tasks and a feeling of accomplishment that you are helping yourself and those you love.

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When I die don’t think you’ve “lost” me.

I’ll be right there with you, living on in the memories we have made.

When I die don’t say I “fought a battle.” Or “lost a battle.” Or “succumbed.”

Don’t make it sound like I didn’t try hard enough, or have the right attitude, or that I simply gave up.

When I die don’t say I “passed.”

That sounds like I walked by you in the corridor at school.

When I die tell the world what happened.

Plain and simple.

No euphemisms, no flowery language, no metaphors.

Instead, remember me and let my words live on.

Tell stories of something good I did.

Give my children a kind word. Let them know what they meant to me. That I would have stayed forever if I could.

Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:

There is no better place to me than being here with them.

They have learned about grief and they will learn more.

That is part of it all.

When I die someday just tell the truth:

I lived, I died.

The end.

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I’ve been public about my criticisms of the Susan G. Komen Foundation for a few years. That criticism has not been easy; after all, I’m criticizing a huge organization which claims to be committed to finding a “cure” for the disease I have. Even my choice of words there is related to my criticism of Komen; I think they need to focus less on a “cure” and more on acknowledging and helping women deal with cancer after their initial treatment and/or those women like me who have metastatic breast cancer. Survivors, and there are more and more of them, have long term physical needs, psychological concerns, and medical issues that are unique.

I started out like many breast cancer women do, looking to give something back when I finished my surgeries and chemotherapy. I was energized, and wanted to help. Of course, the Race for the Cure in Central Park is one way to do that.

In 2008 I joined a family friend and her fellow Yale students for the Susan G. Komen Race for the Cure.

I believed I was a part of something big, meaningful, important.

The following year I asked my parents if they would join me at the Race for the Cure to mark my 40th birthday. At my birthday party I eschewed personal gifts and asked instead that guests donate to our family team. We raised almost $15,000 that year between the party and other donations. My mother (a stage III cancer survivor) and I walked in our pink t-shirts with my father and my daughter Paige.

I wrote a piece in 2009 (titled “A Walk in the Park) about the experience. I’m including the text here because I think it shows my commitment to the cause, to that day… at least what I thought that day meant.

“More than just a walk in the Park.” 

That’s the catchphrase that the t-shirts sponsored by Duane Reade had on them at the Susan G. Komen Race for the Cure yesterday. Clever. You spend a lot of time reading people’s backs while you walk the 5k. 

Some people just have their registration numbers. 
Some have bright pink signs that read “In Celebration of” or “In Memory of.” 
Sometimes it’s one name. 
Or two. 
Or a list. 

I didn’t wear a pink sign.
My list was too long.
You guys know who you are.
It would have been a long list.

And then it would have said:
Mom.
Me.

Sometimes there is a photograph or drawing on walkers’ pink placards. 
Or a drawing of some hearts. 
Sometimes the writing is neat, businesslike, easy to read. Sometimes it’s in a child’s handwriting. 
Sometimes it’s hard to read, in magic marker or crayon. 
Sometimes there are stickers. 
Sometimes it’s a full name, 
Sometimes it’s more familiar,
“Aunt Cathy” or “Grandma Rainey.” 

It might be “Mom,”
or “Nana”
or “Bubbe.” 
“My sister.” 

There was a man walking in front of me for almost a mile whose bright pink sign said “In Celebration of ME.” Male breast cancer is not common, but it’s real, and it can be very aggressive. How hard it must be to be a man with breast cancer, I pondered. It’s almost always talked about as a woman’s disease.

There was a t-shirt that said “Pink is the new purple” on the back. We followed it for a few minutes, unable to figure out its meaning. We kept hypothesizing what it meant. Finally my mother ran ahead a few steps and asked the young woman in her 20s what it meant. My mom returned with the explanation:
Her sister had breast cancer. 
Her sister’s favorite color was purple. 
Her sister had died of breast cancer. 
She was walking in her sister’s honor; 
Therefore, pink was the new purple. 

There was the man we caught up to and quickly passed who did the whole route limping heavily, walking with a cane. “Wow,” Paige said, “that must be really hard.” 

“Yes,” I said, “That’s what this day is all about. 
It’s not about going the farthest distance. 
It’s not a marathon. 
It’s not about pushing your body to do the most it can do. 
They make this race a distance that lots of people can do. 
Even cancer patients who are in the middle of their treatment.
They want to include everyone: 
Moms with strollers, 
people in chemo, 
that man with his cane. 

It’s about raising money, 
not about making the walk too hard that people can’t do it. 
It’s about bringing people together.”

There were families. They forced me to struggle to keep composure. Dads with children. Usually they had matching t-shirts with pictures of a woman on them. They all said a woman’s name and then “Mommy, we miss you.” These were families grieving women who were taken from them. Families who had lost their queen to breast cancer.

Twenty-five thousand people were there yesterday. 
We were only four of them. 
Everybody had a story. 
My mother and I were only two of those breast cancer stories. 

We were united yesterday with a purpose: To keep our daughters, nieces, and friends from having to go through what we did. 
The distance wasn’t far to walk. 
The distance we have to go to find a cure is. 

I don’t personally know that I believe a cure is possible. 
I don’t think in those terms. 
I do believe that the advances we have made/are making in improving treatment are real. They help in terms of lower recurrence rates (fewer women get cancer again after having it once), higher survival outcomes (fewer women die from their cancer), and better quality of life. Even if we can’t find a cure, I believe that the more money we can get into the hands of scientists and foundations to help get women the care they need for their bodies and their minds can only be good. 

I wore pink and walked side-by-side my mother yesterday. 
I felt lucky to have her with me. 
I felt lucky that she was alive to be next to me after being diagnosed with stage III breast cancer. 
I couldn’t treasure her more than I already do. 
But this disease is one thing I don’t want Paige to have in common with us. 

It was a great day yesterday. 
Paige and I woke up tired this morning, but happy. 
Last night when we pulled into the garage I gently shook her awake. 
I told her how proud I was of her. 
I told her how happy Nana and I were that she had been with us. 
How great it was that we had made a memory like that together.
How proud she should be that she and I had raised about $7000 for Komen for the Cure. 

It really was more than just a walk in the Park. 

So much more.

…………………………………………………..

In fact, the last time I spoke to my mother-in-law before she was killed in a car crash was a phone call she made to tell us how proud she was of us for raising so much money for Komen.

But after that event my feelings started to change. My health was still affected daily by the aftermath of my cancer. I started to be bothered by staplers with pink ribbons on them and football players decked out in pink sweatbands. I started to dread October’s ubiquitous pink ribbons in the name of Breast Cancer Awareness Month. Facebook status updates with women writing in silly code about where they leave their handbag as a veiled hat tip to breast cancer “awareness” started to bother me more and more. Soon friends and I started a contest; we would snap photos of the craziest products we could find with a pink ribbon on it. When Komen partnered with Kentucky Fried Chicken and Mike’s Hard Lemonade, people started wondering about some of the choices Komen was making; after all, fatty processed foods and frequent alcohol use are risk factors for breast cancer. I wondered, too.

As I’m feeling worse about all of this “pinkwashing,” I learned that Komen was getting litigious against everyone from kids to business owners trying to raise money for cancer charities. Why? Because Komen said that only they could use the phrase For the Cure (a brief overview here). I love what Stephen Colbert said:

Anybody who knows me knows I am a huge supporter of the Susan G. Komen for the Cure foundation, which raises millions of dollars a year in the fight against breast cancer . . . So I’m giving a big Tip of my Hat to the Komen foundation for spending almost a million dollars a year in donor funds to sue these other groups. If they don’t own the phrase “for the Cure,” then people might donate money thinking it’s going to an organization dedicated to curing cancer, when instead it’s wasted on organizations dedicated to curing cancer.

………………………………….

By this point I was getting more and more annoyed with Komen’s corporate actions that simultaneously limited the language others used to raise money for cancer research while expanding its own pink grasp seemingly without standards. I stopped raising money for them. I felt the Komen organization was putting a happy face on breast cancer, and not paying attention to the often-unpleasant realities of life as a survivor (including recurrence). Survivorship isn’t always always smiles and pink ribbons. I wrote one of my most popular posts “These things are not tied with a pink ribbon” to capture some of those feelings:

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

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A few months ago I asked my mother to share some thoughts on the difference between guilt and regret (A Psychologist’s Perspective on Guilt vs Regret, February 7, 2011). That post quickly became one of my most-read pieces. When I knew my mom was coming to visit this past weekend I asked, via Twitter, if anyone had any questions they wanted me to ask her.

One reader wrote:

My mom passed away six years ago, when I was 24, after a five-year battle with cancer. I’m getting married in a few months and I’m finding two things difficult: 1) going through a big life change, and the actual planning of the event, is making her loss feel much more at the forefront than I expected; 2) I’m struggling with marrying someone who didn’t know my mother and doesn’t understand (and honestly, not sure how he can, not being there) my grief.

My questions are: how do you help the new people in your life know the person you lost and understand the depth of your grief? And how do you deal with the new kind of grief that comes with entering a new phase of life?

……………………………………..

My mother, Dr. Rita Bonchek, spent her career as a psychologist specializing in grief, loss, death, and dying. She had some thoughts on the subject. I decided to add my own take on it; that perspective appears after hers.

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