When

A few posts ago, I wrote about concentrating on the idea of if the cancer comes back, not when. All I got to say is when is now.

I received the official word the night before Thanksgiving that my most recent PET scan showed a slight enhancement on my liver and that there was a new spot on my rib.  My oncologist calls it an early progression, and is starting me on the chemo Kadcyla next Friday. Kadcyla is a combination of chemo and Herceptin, and delivers the chemo directly to the cancer cells. It is supposed to be much more gentle. I get to keep my hair.

Frankly, keeping my hair is no consolation. I'd rather keep my life. But here we go again. I was hoping and praying the Herceptin and my body would keep the cancer at bay for years. My oncologist tells me I exceeded her expectations for how long I would stay stable. Seriously? She expected me to start dying sooner? What the. . .? That thought ain't no consolation either.

Happy Thanksgiving to me.

Honestly? I've been crying consistently since hearing the news. Today I lost it, pulled over after getting lost, throwing any free item I could reach around the inside of my car in a fit of rage. I am angry. I am sad. I am scared. And I am angry.

This is not fair. I know people who are total assholes who have had metastatic cancer and now seem to be cancer free. And this idea of "just keep fighting?" Screw that. I am sick of fighting. I just want to live my life. I am tired of living with the Damocles sword of death, resulting in the re scheduling of anything in my life that might mean anything to me. As a trucker might say,  fuck this shit.

Tattoos not advisable while on chemo? I'm getting one any way.  Vacations a risky idea? I'm going. Big purchases not recommended. I'm buying.  Life can do what it wants with me, but I'm gonna live.

All I have to say is when, when, when. Fuck that shit. I'm going to live now.

Cancer Should Never Be a Usual Experience

The other day I found myself using the word "usually" in the same sentence as "cancer".  I was asking a friend if she would meet me for lunch after my every 6-month scheduled CT and bone scans, and, was telling her that usually the technician injects me with the radioactive substance, has me drink the barium, and then sends me off for the CT.  I said those words without thinking. But after a few minutes, it hit me.  I have a "usually" when it comes to cancer?  How could anything ever be usual about cancer?  Am I nuts?  Two years ago, there was nothing usual in my mind about cancer except that the people I knew who got cancer, usually died of cancer.

So when I was diagnosed with cancer, especially Stage IV metastatic breast cancer, I immediately thought I was going to follow the usual pattern and die.  I didn't. Instead, I lived. And almost two years later, I was telling a friend about my cancer "usual." After this long, I have a pattern, a routine.  I am still surprised to hear myself be so blasé, so usual about cancer.

But let's be honest. What I have is luck. For too many people with cancer, their usual is short-lived and painful. As I heard an oncologist say shortly after I was diagnosed, how someone fares with cancer is entirely dependent upon the biology of the tumor and the biology of the person who has that tumor. Cancer is like a virus. It learns the treatments, learns the body's biology, and it outsmarts the system. I have lucky biology.  I have a relatively easy usual.  And I am grateful.

But I am not naive. I know this lucky ride can end at any time.  The cancer could easily learn my biology, and take my life away bit by tiny bit. I've learned to live with the fear.  When fear drifts through my mind, I've learned to push it away, and think, "Well, best get on with what I'm doing, because who knows if I'll be able to do this much longer."  It might sound weird, but thinking this way makes it easier for me. And in an odd way, thinking this way makes me grateful.  I'm grateful that right now I can drive, walk, attend a party, see a play. I'm not trying to be melodramatic. It is the truth.  I've seen too many people unable to do even the simplest of things as they suffer through unending cancer treatment and progression.

So Lisa and I will be eating lunch this Friday at my usual post-scan restaurant, as I wait for my usual once a month Herceptin infusion, after which I'll head home for my usual post-scan nap.   And I will be grateful for my friend's company and care, and for the tasty post-scan meal. Luck is my cancer usual, and I'm going to keep on knocking on wood that the luck ride continues.  I live in the world of cancer, and it's an unbelievably unusual world in which to live.

If, Not When

I'm going to knock on wood before I post this (really).  That's what I do. I knock on wood.  I comment that I don't believe in God, but I do believe in knocking on wood. By that I mean that I do not believe God does stuff to us, gives us cancer or takes it away.  I wasn't given this. I got this.  But for some reason, knocking on wood just makes me feel better.

I do want to talk about the concept of "If, not when."  So I'm going to knock on some wood before I type this to keep the evil eye of cancer away.  Wouldn't it suck for me to say that I'm doing well, and then the cancer came back?  Knocking on wood here.

So back to if, not when.  When I visit my oncologist, her patter includes the concept of "when the treatment stops working."  Now I understand that her experience has been that her metastatic breast cancer patients' cancer eventually learns the treatment and then the cancer progresses. But it wasn't until recently that I realized how her constant talk of "when" was affecting me. It was bumming me out.

The Land of When has me thinking ahead to the day when the cancer will progress, how that will result in my disability, my job loss, my eventual pain-filled death.  In the Land of When, I am afraid to make plans, I wake up in the middle-of-the-night in a panic, and I watch and wait in fear.  And I am tired of living in the Land of When.

Sadly, I don't think doctors realize how much what they say affects a patient.  People literally live and die on a doctor's word, demeanor, approach.  My oncologist certainly does not mean to harm. Instead, I think she is trying to help.  I often joke that she is like the parent who doesn't want her child to be disappointed. "Honey," she says in the mode of an overprotective parent,"I know you really like that boy. But he might not like you, so don't get your hopes up."

But my question is what is wrong with getting my hopes up? What is wrong with expecting the unexpected?  What if I'm that very rare patient whose cancer doesn't progress?  What if 10 years from now, I am still taking Herceptin and the cancer has remained in check? (Knock on wood.)  And what if I live those 10 years in constant fear and panic?

That would suck.

I don't want live in the Land of When.  That's like living in Purgatory, and I hear from the Catholics that that's not a pleasant place.  I want to live in the Land of If instead. A land where the question is, if the cancer progresses?  If I am disabled? If.

That's the land that most people live in. Most people don't go through the day thinking, I will be disabled, I will be in pain, I will suffer.   What can it hurt for me to live in the Land of If too? I might be disappointed if the cancer progresses?

I'd rather experience disappointment if the cancer progresses, than to experience  that disappointment every day of my life.  Even if I only live 30 more days, living in the Land of If sounds much more pleasant than living in fear.

So screw the Land of When. Screw the Land of Fear. Screw the Land of Pain. I refuse to live there any more.  I'm moving over to the Land of If.  Packing the truck and knocking on wood right now. If. If. If. If.

Damnit. If.  I'm moved.

Now to tell my overprotective oncologist.

Also published on CureToday

Job's Friends

I've always disliked the Book of Job. The idea of God laying a bet with Satan to test the strength of Job's faith by hurting him and taking everything away that he loves is a disturbing idea, to say the least.

But there is one important message I heard in reading the story, and that is the reaction of Job's friends.  Job's life is being whittled away bit by bit.  He has lost his crops, his livestock, his family.  He is truly aggrieved.  Job's friends live a distance from him, but they come together and decide to go to Job in order to help him mourn.  For the first seven days, they merely sit with him, quietly.  They do not say a word.  They support him, let him have his sadness, be there with him in his time of trial.

But finally they speak. And what they say to him is that it is his fault, he has sinned.  He deserved what he got.  And then they give him advice.  And they do not stop giving him advice. For pages and pages they give him advice.  And even when Job tells his friends that they are "miserable comforters," they still will not shut up.

Want to know my favorite part of the Book of Job?  After pages and pages and pages of advice giving, God finally speaks from a whirlwind, and  basically says to Job's friends, "Who are you to talk?"  And then he tells them to shut up.  Best moment ever.

What impressed me in the story was the seven days his friends sat with Job and comforted him.  I know I've been guilty of wanting to fix things for a friend, giving advice instead of comfort. But really, the most valuable thing a friend can provide is quiet and steady support.

And that's what I've learned to value.  My friend Lisa who offers to come over and keep me company. My friends Deborah and Carole who would drop off delicious food on my porch. My friends Emmy, Jo Ann, and Sheila who came with me to doctor appointments.  My friend Ann who would send books and little surprises through the mail. My Aunt Carole and Uncle Mike who came with me to chemo and took care of me after my surgery. My nephews Josh and Ben and my sister Meg who came to DC several times to help me maintain my house and just keep me company.  My cousins Diana and Bob who drove down from Pennsylvania, in spite of troubles of their own, to tend my garden and fix a few things. And many, many more people who did  many, many more things.

These are the actions that matter. This is a friend.

As Henri J.M. Nouwen so aptly stated, “When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

The lesson of the Book of Job?  Mourn with a friend, sit with a friend, and shut the heck up.  That's a lesson I sure need to remember.  I'll shut up now. I'll be here for you when you need me.

The Probing Continues

I think the hardest part of metastatic cancer is the fact that I never get a break from cancer.  Never.  And that is very annoying.  I often joke during my Alcoholics Anonymous Meetings that I just want a little denial, a little pretending that this isn't going on.  Can I make believe I don't have cancer? Can I play the role of the never cancer ridden for just one day? The other recovering drunks seem to get the joke.

Sadly, I haven't gotten the chance to be in denial yet.  From chemo, to recovery from chemo, to mastectomy/reconstruction and resulting muscle spasms, and now blood clot. I live a life of doctor appointments, medical procedures, and scans.  Regularly I am thrown into abject fear of my own demise by yet another health scare.  I am getting tired of it.  No. I am tired of it.  Today I heard a woman say that, after nine surgeries, she had gotten so sick of doctors, that she did not go back to a doctor for two years.  Sadly, that would not be possible for me, if I want to live. But it sure sounds tempting.

My oncologist is an incredible doctor, and I am very grateful for her care. But she is a bit like an over-protective mother. Now, considering that my own over-protective mother is no longer here, I am grateful that there is a being in this world who shows me that kind of care.  But at the same time, I could use a few less scans.  Tomorrow the scan is an MRI of the lumbar spine, a scan I call the tube within a tube, me inside an MRI machine, my head and neck tucked into a smaller tube.  It is a scan that requires a great deal of zen to endure, with the keywords being possible claustrophobia. I had this same scan over a year ago, a small spot found on my tail bone, and the oncologist wants to check that spot again.  Since I just had a bone scan on May 17, I'm not quite sure why this additional scan is needed. To me, this is another reminder that I have cancer, and I am not thrilled.

Monday of this week, I saw an ear, nose and throat doctor about my continuing bloody noses. I had the joy of being probed up the nose and then having the nostril cauterized.  My comment is that my goal is to be probed in every orifice of my body.  One colonoscopy and I'll be done. My dream is to have one week without a doctor appointment, just one.  As I told another metastatic patient, I am not used to being unhealthy and dealing with these medical issues, so I have no idea how to react.  Is there a school for being an unhealthy person? Can I take online classes?  I need to find some way of coping with this roller coaster ride of fear.

I'm knocking on wood that tomorrow's MRI will simply confirm that the spot on my coccyx is the result of a childhood fall, some jerk pulling the chair out from under me as I began to sit at my classroom desk.  Maybe then I can get some time and distance between me and the medical field. I mean they are nice people and I enjoy them, but I'd like to date other people.  At my oncologist office this week, I told the staff that they were my longest relationship.  One person's response was that was okay as long as I didn't marry them.  And I don't want to marry them either.  Cute nurses and doctors be damned.  I deserve a non-medical world.  So with my cauterized nose and tube within a tube MRI, maybe I can grab a few days, go back in time to when the worst I could say about my health was that I have high cholesterol.  So I'll say it. I have high cholesterol, damnit. That's me.  High cholesterol woman. Skip the breasts. They're not real anyway. I'm out of here. Later.

Walking the Dogs: Coping With Cancer Fears

My mother told me that when she and my father were getting divorced, she walked the dog a lot. I think what she might have said was, "I walked that dog for miles and miles." She said she did this because she was so anxious about the divorce and the uncertainty of her future. I can't blame her. At that point, she had been married for 16 years, and had not held a job for as many years. She was about to venture out on her own for the first time in her life, loading the car up with four children and a dog. And she was going to do this with relatively little money, and the need to find a way to support that crew of kids. No wonder she walked the dog so much.

I can certainly identify with my mom in many ways, since I've had many of my own moments of fear and uncertainty. But I've never dealt with anything as challenging as Stage IV metastatic breast cancer. This is a whole new level of uncertainty and fear.  Sometimes I'm okay in that fear, the anxiety ebbing low.  But other times the fear sweeps over me, puts me on alert, slows my breathing, buzzes through my brain.  It's at that point that I think of my mom walking the dog. And like my mom, I leash up the dogs, and I walk. Walking really does help, each step taking a bite out of the anxiety like a moving tranquilizing machine.

But my mom taught me another lesson.  When she was younger, she was a frightened woman, raised by two critical and angry parents, her gentle soul apparently retreating into a place of doubt and trepidation.  She grew up to be a woman frightened to drive, frightened to change, frightened for the people she loved. My grandfather's favorite phrase was, "I don't mean to be critical, but . . . ", the words after that anything but gentle and kind. The sad part was that when my grandfather died, several years after my grandmother, my mother commented that her father, my grandfather, was the "nice" parent. It was at that point that I realized more fully what she had been through.

My mother had her demons and the way she quieted the demons was food addiction (in her case, it was compulsive overeating). Food addiction ruled her life and almost took it, pushing her into diabetes, kidney failure, arthritis so bad both knees had to be replaced. Finally she experienced breathing difficulties severe enough to put her on oxygen, her life lived at the end of a 100 foot tube.  It was this final malady that almost took her life, and finally fully awakened her to the dangers of her addiction. She sought help from Overeaters Anonymous (OA).  With the aid of a food sponsor, whom she called every day to commit her food plan, meetings, and working the 12 Steps, she achieved abstinence, a healthy weight, and her health issues resolved.  But most importantly, she was happy.  Really happy.  The happiest I had ever seen her in her life.

When asked what happened, why she went to OA, she would reply, "I would look at the Twinkie in my hand and tell myself, I can eat the Twinkie, or I can breathe."

The response was humorous, but didn't really capture what my mother's actions meant.  My mother had chosen life, and the message she sent was one of hope, and that is was okay to ask for help.  Accepting help keeps us alive.

Like my mother, I am fiercely independent and I can dwell in fear. I do not want to be a burden or dependent. I am afraid to ask for help. But here I am, in a situation where I have no choice. In order to stay alive, I must ask for and accept help. At these moments, when I’m too scared to ask for help or take the hand offered to me, I look at my mother’s example. This frightened and independent woman chose life by asking for and taking help every day. The life she led was finally one of serenity and peace. My mother deserved that peace and so do I.

My mom is no longer here; she died of a stroke in 2008. I hold her love in my heart. Her strength to reach out and keep reaching out is something I will never forget. I can only hope that in my own struggle against a terrifying illness that will eventually kill me, I have the strength to reach out as well. Admitting limits never hurt anyone and it actually can save your life. My mom taught me that. I miss you, Mom. I’ll do my best to follow in your footsteps. In the meantime, if anyone needs me, I’ll be out walking the dogs.

Also published on CureToday

Bloody Noses and Anxiety

I am convinced that I am going to bleed out due to a bloody nose. I am on a loading dose of a blood thinner,Xarelto, taking two pills a day in order to dissolve the blood clot in my neck. Part of the problem is likely due to the description my doctor used when telling me about the drug. Coumadin, she told me, has an antidote for excessive bleeding. The patient is given vitamin K, and that restores the blood's clotting ability. Xarelto, she said has no antidote. It was the words "no antidote" that made me particularly nervous. She went on to say that when a patient on Xarelto begins to excessively bleed, they are given a transfusion and the med flushes out of the system within 10 to 12 hours. So in other words, that is the antidote. But no, she had to tell me there was no antidote. So now every time I get a bloody nose, I am convinced that I will bleed out. By the way, if this is true, please do not call me and tell me this. I have one week left on the loading dose, and then I will be down to taking one pill a day. I just need to make it through this next week. Thank God for Xanax.

Really I should be fairly chilled out at this point, but something about this blood clot has me back into the anxiety of what will happen next with this cancer. I am unfortunately spending too much time thinking about it, when I should simply be enjoying the fact that my last scans were stable. To paraphrase Michael J Fox, if I worry about what will happen, it may or may not happen. And if it does happen, I've experienced it twice. So the challenge is how do I stay in the moment?

I was talking to my friend Mary Rose the other day on just this subject, and she tells me that when she spends too much time dreading the future, she literally curls her toes to remind herself that her feet are right here in the present. A simple way of staying put. And frankly, it works. Mary Rose is a wise woman.

But the other part of the equation is acceptance. Lately I've been spending too much time thinking about that mammogram my gynecologist did not order (she had just dropped me to the new every two year guideline). The result of this kind of thinking is anger and hurt, which frankly is not going to help. So, as they say, acceptance is the key. Anger, hurt, and sadness is not going to change the fact that I have Stage IV breast cancer. I still remember someone asking me if there was Stage V breast cancer. I told them that that would be dead. It's good to have a sense of humor about this.

There are moments that are better for me. Finding the clinical trial for a breast cancer vaccine for HER2+ breast cancer was a hopeful moment. Having the researcher write me, telling me that, while I could not take part in this phase I study, she would put me on the list for phase II, and that it was very good news that I was stable. This made me even more hopeful. I hope to be here for her Phase II. But the most hopeful thing of all is the fact that there are many breast cancer vaccine trials being conducted right now. The idea that a vaccine can stop breast cancer certainly gives me hope for the future.

Other helpful moments are when I can help somebody else. I've tried to contact a few organizations who connect cancer fighters with each other, so that the person who is further down the road can support the person who is just starting. At this moment I've been told to wait a little longer before starting this effort. But I do post on the site breastcancer.org, and occasionally something I say helps someone else. That is a good moment for me, a moment not wrapped in the anxiety for my own future.

I've been told by others with advanced breast cancer that it just takes time to adjust to this new way of living. I've always been somebody who is close to my emotions. Denial has never really been my forte. But perhaps a little denial is in order here. I am hoping that once I get into a cancer groove, I can slip easily into denial, and for the moments I focus on the fears of the future, I can just curl my toes to remind myself that I'm right here right now. But then again, that is easier said than done. Meanwhile, there is Xanax. Thank God for Xanax.

I Am An Old Hat at This Medical Stuff

My doctor called at 9 p.m. tonight to give me the results of my bone scan and CT done earlier today. The results we're very good. Things are stable and there is no new cancer growth. However, during the CT, they found a blood clot in my neck.  Likely this is due to my chemo port, which connects into the vein in my neck. My doctor was obviously concerned and wanted me to go to the emergency room for an ultrasound and MRI of my brain. After that I'll be given blood thinners, something that makes me feel truly old (the only people I've known on blood thinners have been 65 years and older).

So here I am at the emergency room at George Washington University Hospital, hooked up to an IV, blood work done, waiting to be taken to the MRI. I arrived here at 10:30 p.m. and it is now 1:41 a.m. Not bad in emergency room terms.

I think most people would be very disturbed by this development, but I am not really shaken. Compared to the terror of the cancer spreading further into my body, a small blood clot that can be dissolved with blood thinners seems almost mundane.

I am just happy to have the stable scans.  As I was telling someone earlier, having a diagnosis of stage IV cancer is somewhat similar to being a prisoner on death row. The scans are like a governor-provided reprieve from the chair. So now that the governor has called, and said don't take her to the chair yet, I'll get back to trading cigarettes with the other inmates. As long as I have three hots and a cot, along with TV, I'm good.

I guess all that knocking on wood to ward off the cancer worked. And believe me I am happy for the reprieve. Thanks, guv.

How to Help a Cancer Patient, Or Any Other Chronically Ill Person

When I was diagnosed with cancer, people kept asking me how they could help. Frankly, I was so overwhelmed, I had no idea what to tell them. But as time went on, and I was increasingly disabled by the chemo, I began to work hard to think of concrete things people could do to help me get through the daily living of being treated for cancer.  I thought I'd share some of these thoughts with you all for the time you might be the potential helper looking in, wondering what to do.

What to Say to a Cancer Patient 

But first, I want to talk about what to say to a cancer patient.  I know that talking to someone who is in pain is a scary event.  I didn't know what to say when I dealt with very sick or grieving people, until I became one of those very sick and grieving people.  Many well-meaning folks have spouted out the first thought that came into their heads, leading to countless stories of people dying of cancer and other statements I just didn't want or need to hear while dealing with the terror of my own cancer.  Here are the two best things to stay to someone with any illness or grief:

1) I am so, so sorry.
2) What can I do to help?

Do at least say I am sorry, and maybe follow that up with an offer to help. But after that, do not say another word, unless it's another version of I'm sorry or how can I help.  Unless you yourself have had cancer, do not give advice, do not offer cures you've heard about, and do not tell the person about the horrible cancer death you were either part of or heard about.  Just say, "I am so, so sorry" and/or "What can I do to help?"  If you know of someone who has survived the same thing, do tell that story. But don't follow that up with, "And then a couple years later she died."  Somebody actually said that to me. It didn't help.

For even better advice on what to say or not say to a cancer patient and their loved ones, Susan Silk wrote a great op-ed piece in the Los Angeles Times called "How not to say the wrong thing".

How to Help a Cancer Patient

Now on to the how to help topic.  Cancer treatment, or any treatment for a chronic illness, is a humbling and disabling experience.  When it got bad, I couldn't even take out my own garbage, much less climb up my steps. Grocery shopping was impossible.  Cooking? Forget about it.  So here is a list of concrete actions you can do to help someone going through treatment for cancer. I am single, so my list varies from the list someone with children would have, so I've added s few extra items for the folks with kids and other responsibilities.

Helping Action List 

Food

• Pick up some groceries, even a box of cereal and a gallon of milk helps;
• Drop off pre-cooked, individually packaged, freezable meals.

Household Chores

• Offer basic house cleaning, even just once. Living in squalor is one of the less pleasant side effects of being treated for cancer;
• Offer to do basic chores such as take out the garbage every week, or offer to help with gardening. Even a load of laundry would be greatly appreciated.

Children and Pets

I do not have children but do have dogs. Luckily, I have a fenced backyard, so could just open the door and let the dogs out to do their business.  But there were other parts of dog ownership that became challenging as I went through treatment.

• For pets, if the patient does not have a fenced in yard, offer to add their dog to your own daily dog walks.  Or maybe even offer to have the dog over as your guest while the patient goes through the worst of it. It sucks to miss your furry friend, but sometimes it just gets so bad it's impossible to do more than care for yourself.  If the patient has a fenced in yard, offer to come over to pick up the weekly dog poop.  Or offer to help the patient get their dog to the vet, if that's needed.   Another helpful offer?  Pick up dog food or other supplies for the patient.  Thirty pounds of dog food was not happening in my world during treatment. As I mentioned, basic tasks become very difficult while going through chemo.
• For children, offer to take the kids one day on the weekend or during a weeknight evening, just to give the patient a break. Or, if the child is on the way from when you drive your own child to school, offer to add the patient's child to your drive to school as well.  Same concept with appointments.  If the patient's child needs to see a doctor, offer to take that child to the doctor for the patient.  While in my own treatment, I read about women in chemo, taking care of children, and wondered how the heck they did it.  I was lucky. I only had dogs, and, frankly they are old enough that sleeping and chilling with me seemed fine with them.  I called it "striking the pose."  When I came home, we all struck the pose of sleeping. But children? They don't like that laying around thing all the time.

Doctor Appointments, Test and Treatments

• Give a patient a ride to an appointment, go with them to chemo, even go into the doctors exam room with the patient. It sucks to be poked and prodded, and a little company goes a long way.  Plus, when I saw doctors, I often felt overwhelmed, so the second set of ears was invaluable.  My friend Jo Ann even brought along a recorder and would record each appointment.  Again, doing this even just once for the patient makes a world of difference.

Just a Little Human Companionship

Now for the less chore-oriented but very important subject of human company and encouragement.  My chemo went on for 5 solid months with Taxol every week.  As I became more disabled, I was less and less able to get out of the house.  This only added to my increasing depression.  Here are a few things you can do to help keep a cancer patient's spirits up.

• Send a greeting card, maybe even once a week. Send it as an ecard or regular US mail. Make it funny. Make it heart felt. Just send it. Knowing that someone remembers me when I'm trapped at home is a big deal;
• Offer to come over and just sit with the patient. My friend Lisa got to the point where she would come over every Wednesday night. She would pick up food on the way over, and we would just eat and watch TV.  That once-a-week company was a lifeline for me;
• Drop off or send something sweet or silly.  My friend Ann sent me a few books and some lovely cleaning cloths for sensitive skin. Doesn't matter what it is, send it or bring it by.  Cancer sucks so bad that even the smallest gesture becomes enormous;
• Text, call, or email to say, "How are you doing."   Maybe even do this once a week or even every two weeks. The patient may not be able to say more than a few words, but the checking in matters.  A friend of mine, who also has bad things happening in her life, did not check in with me.  I didn't expect daily check ins, but at least every two weeks would have told me she cared.  I checked with her a few times, and when she didn't reciprocate, I stopped.  The people who did check in with me, they are my angels.

Super Angel Friend Level 

And if you really, really want to go the whole 9 yards (aka the Super Angel Friend level), help the cancer patient figure out what she or he needs, and coordinate people in meeting those needs. There is a wonderful website called Lotsa Helping Hands (http://www.lotsahelpinghands.com/) created by folks who went through just this situation. The site allows you to set up a caring community for a patient, and coordinate volunteers and requests.  Being sick is a daunting situation, and I know I couldn't think straight most of the time.  Helping a patient think and coordinate help is the greatest love of all.

So there you go. Basic ideas for how to help someone who is ill.  If you have any more ideas, please do add them to the comments below.  It takes a village to raise a patient, and it takes a bunch of minds to figure out how best to help one.  I know I had my own village of friends and family who helped me, and I cannot begin to repay them.  But I do know they all get to go straight to Heaven.


Also published on CureToday

I'm Going to Live Until I Die

I think most people are discounting Valerie Harper, who recently disclosed that she was diagnosed with metastatic lung cancer to the brain in August 2013.  Certainly, cancer in the brain is horrible, horrible news. But I have learned, while living with metastatic cancer myself, that there are many who live for long periods of time after the cancer has spread. Harper's doctors originally only gave her 3 months, but as she has said, ”I’m well past my expiration date already.”

And that is the attitude I do my best to take about my own metastatic cancer. My favorite quote from Harper so far is, "When the smoke clears, I'll be standing, until I'm not."  Valerie Harper has decided to keep living.  Critics respond by saying she is "not being realistic."  And here's what I say to that type of feedback.  You want this cancer?  I'll happily give it to you. Let's see how you "live" your life.  Would you want to be "realistic" and sit on the couch of death until you die? What if you live another 20 years?  Do you really want to have lived your life focusing only on the fact that you're dying?

I occasionally look at websites where other Stage IV patients gather to chat. This can be a dicey experience for the newly-diagnosed. Many of the participants on these lists are experiencing recurrence after recurrence of their cancer, battling the disabling side effects of chemo and the progressing cancer.  The posters to these sites are doing their best to live in hope, and provide a great deal of compassion to each other. One poster on the list, though, particularly caught my attention.

She had been diagnosed with Stage IV breast cancer 10 years prior.   When I saw that number, I thought, "Ten years?  My goodness how wonderful. She's lived 10 years past her diagnosis." But the tone of her web post did not express wonderful.  She talked about how, because she had been newly single at the time of her diagnosis, she had just started dating.  She went on to say that she had not dated since her diagnosis.  Then she continued with a list of all of the other things she had not done in those 10 years, and the physical side effects of her treatment.  Now side effects are a nasty reality of past or current cancer treatment, and they are worth complaining about. But my distinct impression was that this individual had received her diagnosis, and had decided she was dying. So she lived the next 10 years as if she was going to die any day.  She was right. She is going to die. We all will.  But the years she had gotten past her supposed expiration date did not sound pleasant. In fact, they sounded very unpleasant, she sounded very bitter.

I can't control the fact that I have Stage IV metastatic breast cancer. But I can control how I live my life now that it's here. As the poet Ella Wheeler Wilcox once said, "With every rising of the sun, think of your life as just begun." This is one of the good side effects of cancer. The disease has brought my life into a new perspective.  While I have not necessarily changed the way I'm living, I certainly am much more aware of enjoying the way I'm living.  Dinner with a friend.  Seeing a touring Broadway play. Hanging out with my dogs. Sending funny t-shirts to my grand nephew, Klaus (the latest states, "Keep Calm, Dude").  These are the little things that make up a good life.

Another great quote from Valerie Harper, “Don't go to the funeral until the day of the funeral."  I've never really liked funerals myself, so I don't want to be constantly attending my own virtual funeral, whether my life lasts for another 2 years or for 20.  So like Ms. Harper, I will continue to be "unrealistic," and I will be standing, until I am not standing. I am grateful for Valerie Harper's courage in speaking about her cancer, and her courage in continuing to live in spite of the negative opinions of other people.  One website that recently posted an interview with Valerie Harper,  provided readers an opportunity to give feedback, asking "Do you think Valerie Harper is being realistic about her diagnosis?"  My question is why are others so anxious to bury Ms. Harper before she's gone? I'm going to say, keep kicking, Valerie. Because, to paraphrase a quote from the movie Monty Python and the Holy Grail, "You're not dead yet."  And neither am I.

Also published on CureToday

Bringing Up Metastatic Cancer Baby

If only I were a leopard being raised by Cary Grant and Katherine Hepburn. But, nope. I am grown woman with metastatic breast cancer, which is far less glamorous.  Why am I talking about Bringing Up Baby?  Well, my theory is that, just like any being in this world, the metastatic cancer patient has stages of development.

Here's what I've seen so far of my own development:

1) Diagnosis: An extremely terrifying and hectic phase filled with roller coaster conversations with medical staff who inevitably left me hanging over cliffs of terror, often over the weekend.  Shall we compare this to birth? A very, very painful birth.

2) Treatment: This phase is what I like to call Fight, Fight, Fight.  My entire focus was on getting the treatment I needed as quickly as possibly, and then on getting through the horrible side effects of treatment.  Little things like decrease in tumor markers and improving liver readings mattered a great deal, and were holier-than-thou moments at this phase.  This stage might be comparable to those first few years of life, especially the Terrible Two's or a toddler learns the word, "No."

3)  Getting the approval for the double mastectomy: Another iteration of the Fight, Fight, Fight phase, but this time done in a measured and insistently persistent way.  A continuing argument with my oncologist who felt that removing the breast would be just so much fluff and risk, when the cancer had already escaped it's country of origin.  Could this be baby goes to school and pushes the teacher to her limit?  She finally gave.

4) The Mastectomy: How can I describe this? Wound care, agonizing muscle tightness, inability of the surgeon to understand how her placement of a 700 cc silicone breast implant beneath my pectoral muscle might cause pain, and require pain management and physical therapy.  What good is work well done when it makes your life a misery?  Even beautiful furniture can be unbelievably uncomfortable. Coda to Fight, Fight, Fight but with a whole lump of depression thrown in.  I'll compare this stage to Middle School.  Baby goes Emo.

And now where am I? Perhaps the teenage phase. A pissed off teenager. The muscle pain is less, thanks to good physical therapy, and I've got no more fighting to do, at the moment.  So now I'm trying to figure out how to live my life with Stage IV cancer.  Plus, now that I'm done with the fight, I am discovering that I am pissed, I am moody, I am scared, and I am sad. Very, very sad.  Like any good teenager, I am coming awake to how fucking unfair life is, and I am finally feeling the full brunt of all of last year's pain.

The breast cancer was the pièce de résistance of several horrible years.  In 2008, my beloved mother had a hemorrhagic stroke, leaving myself and my siblings to take her off support and help her die. In March 2009 my sister Melissa, during basic surgery, could not be taken off the ventilator, putting her in ICU for a month, and then rehab for another month. In 2010 my friend Joe killed himself. We had such similar lives, I worried that if he couldn't find a reason to live, especially since he seemed to have such a good life, how could I.  I subsequently found out that he had been living with a a very hidden case of major depression.  As a friend put it, he was finally pulled down by living alone with that depression.  In February 2011 my dear sister Melissa finally died of a massive heart attack caused by her compulsive overeating (she was 5'3" tall and was likely close to 400 pounds). And then three months later, one of my best friends died a painful, painful death from cancer, my daily calls to her often met with strained silence as she fought the unbearable pain. The doctors could not give her adequate pain medication because this then sent her heart rate and respiration spiraling down. After they had finally diagnosed the extent of her cancer, they then gave her pain medication, and she died within the hour.

All of this nasty horribleness preceded my January 2012 diagnosis with metastatic breast cancer.  No wonder I'm pissed, scared and sad.  Who wouldn't be? And now that I'm not fighting, and have time to think about the last several years, I've gotten even more angry.  But as they say, it's just a phase.  At some point, I will come through the anger, I hope, and perhaps enter young adulthood. Maybe rent an apartment, buy my first dishes. Who knows.

One thing that has been giving me comfort lately is a performance by the comedian Tig Notaro.  In 2012 she was having an experience similar to mine. She had pneumonia, and the antibiotics to treat this then gave her something called C-Diff, which almost killed her.  A week after she got out of the hospital, her mother died in a similarly tragic way to mine. After all this, her girlfriend broke up with her. Finally, to top it all off, she was diagnosed with breast cancer in both breasts.  Now this is a woman who I can identify with.  Two days after being diagnosed with breast cancer, she performed at the Largo Theater in California, and did an impromptu set that I've downloaded and play every time I start to go too deep into the anger.  You can hear a sample of it at This American Life's What Doesn't Kill You.

Frankly, I don't really get into the what doesn't kill you makes you stronger philosophy. Based on this philosophy, I should be strong enough to bench press Toledo.  But I do believe that what makes you cry can be made better by laughing at it. And that's what this comedy performance does for me, makes me laugh at it.  Because if I didn't have some way of laughing at all this tragedy, and people to laugh with, then I'd be like my friend Joe, alone with my depression. And that didn't work out so great for Joe, you know?

Pennies From Heaven

Yes, I've been in pain lately, although it is much better since starting on a decent muscle relaxant and receiving heavy-duty physical therapy twice a week.  Still, the pain has made me a little bit snarky. Just a little.  Although, snarky is certainly better than massively depressed, which is what I was before I got the decent muscle relaxant.  Yet, I was missing one needed ingredient. Gratitude.

Tonight I was on Facebook, and one of my Facebook friends follows a blog written by a woman dying from metastatic breast cancer.  I say dying because that is what she is doing. In the past two years, she has had six rounds of different chemotherapy drugs and three targeted therapy drugs--my targeted therapy is Herceptin.  My story differs from this woman's in that I have only been on one chemotherapy and one targeted therapy in the last year, and luckily, I have responded very well to Taxol, and the Herceptin is still keeping my cancer at bay.

I am almost hesitant to say this for fear of jinxing my good luck. And that is what it is, luck.  I've mentioned before that this disease splits people into three groups. The first group gets the disease, goes through several treatments, and then eventually dies.  The second group gets the disease, does well for a period of time, and then the disease roars back and has its way, killing the individual.  The third group (the most coveted group of all), gets the disease, responds well to treatment, and stays stable for many, many years.  We all want to be in that third group.  And ending up in groups two or three is a matter of pure luck. Scientists say that Stage IV cancer is individual. How the individual responds depends upon the chemistry of the tumor and the chemistry of the individual who has that tumor.  Scientists have yet to determine what that biology is, so group membership is based entirely on luck.

At this point, it's clear that I am not a member of the first group, making me a very lucky gal indeed. But whether I am a member of group two or three has yet to be determined.  That is a scary, uncertain place.  Reading that dying woman's blog, however, made it clear that I need to be damn grateful.  I have responded, and am still responding, well to treatment.  I am still scared of the disabling and painful nature of this disease.  And at the same time, I did not get metastatic cancer, and then go through chemotherapy after chemotherapy, leaving me laying helpless in bed, and preparing for my soon-to-come death.

Right now I am concentrating on loosening my poor pectoral muscles, and inviting friends to join me in fun and relaxing activities.  I am reading book after book, savoring every word.  I am doing enjoyable work that provides me with a paycheck and decent insurance.  I am still avoiding cleaning my house, a pattern from before cancer, and not feeling a bit of guilt about the layers of dust on my shelves.  I am drinking good coffee, making clever jokes, watching comedies and action flicks, and avoiding any and all conversations about palliative care or end of life--I've had my will and advance directive set up for many years, thank you very much. Right now I am able bodied, relatively physically comfortable, and heading for yet another tattoo (no, this one will not be visible). 

Recently, a local group that raises money for breast cancer research announced a fundraiser.  A photographer's wife had struggled with Stage IV breast cancer, and her husband had documented her journey all the way to her eventual death. The fundraiser will be an exhibit of those photos.  I received the announcement in the mail, with a sample of a few of the photos.  My immediate thought was, oh, Hell no. I do not want to attend an exhibit documenting someone's death.  In whose world would this be of interest? Certainly not mine. 

At some point I will have no choice but to deal with my death, hopefully years and years from now.  But for now, I'll enjoy my good luck.  As I tell people, I don't believe in God, but I sure do believe in knocking on wood.  Somehow knocking on wood comforts me, even if it doesn't actually change things. And pennies.  I pick up any penny I see, just for good luck. The slowly building pile of pennies comforts me as well.  Luck is my friend. We hang.  And I sure as heck appreciate her.  If I have to knock a million times on wood and collect a million pennies, I'll be happy to do it. Meanwhile, I'm going to enjoy my good luck.

Relief

Miss Surly Pants

Finally.  I saw my plastic surgeon last Thursday. Now the woman does beautiful work (as my breast surgeon remarked, as she sent me my plastic surgeon's way, "She makes such beautiful breasts.").  My plastic surgeon certainly does make beautiful breasts, but she doesn't seem to understand pain management.  Rather than trying to downplay my pain, as I tend to do, in this appointment I made it very clear how much pain I was in and how emotionally devastating this pain was to me.

Her response?  "Did you have this type of pain before?"
My response: "No, I can directly relate this pain to the surgery to remove my breasts and then to put new ones in."

I talked about how my muscles were very, very tight at night, waking me up, requiring me to do stretches and massage in order to lessen the pain, so that I could go back to sleep.

After a lengthy discussion, she tells me that she just doesn't know how to help me.  I tell her to give me Flexeril (a muscle relaxer), and that perhaps I need to see a pain management specialist, if this doesn't work.  She adds Motrin to her prescription, telling me to take 800 mg three times a day, along with the Flexeril at night.

That worked. I am able to sleep, only waking up maybe once a night in lesser pain, which I can quickly stretch out and then go back to sleep.  The only drawback is that the Flexeril leaves me tired throughout the next day, but this seems to have lessened as I must be adjusting to the medication.  I am very, very grateful to be in less pain.

And at the same time, I am pissed.  Soon after our appointment, I received an email saying that my medical record had just been updated (George Washington University has electronic records which can be viewed by the patient).  Clicking through to the system, I find the plastic surgeon's medical notes from our visit. The note read something like this, "I am still not convinced that the source of the pain is muscular."

What the fuck? She's not convinced the source of my pain in muscular?  The fact that I have to constantly stretch and massage my muscles for relief is not convincing enough?  Arrogant, arrogant doctor.  The good news is that she will send me on to a pain management specialist after this, so that I do not have to convince this current doctor of the source of my pain.

This constant pain has obviously left me a little surly and is affecting my entire attitude.  I am pissed that I got Stage IV breast cancer right out the door, that I am forced to look at my very possible early and unpleasant death, that in my vanity, I decided to have breast implants, which are creating a discomfort I did not need added to all the other garbage going on with my health.

Okay. I'll stop bitching.  I need a vacation. I need one goddamn good thing to happen to me. Yeah. I know. Being alive a year and a half after experiencing the first symptoms of metastatic breast cancer is a positive thing. Still, what a wonderment it would be to have one nice thing happen to me.  No more deaths of my loved ones.  No more diagnoses of horrible diseases. No more painful and/or debilitating side effects. Throw a gal a bone.  Something. Anything.  I'm not picky.

And somehow, set me free of this pissed off, exhausted place I'm in while you're at it. Being Miss Surly Pants is only making it worse.

For Now

It's been awhile since I've posted. My apologies. Once I was off the heavier pain killers and back at work, typing became painful, so I saved all my typing for work

Here's the latest news. The boobs still hurt. Apparently, my pectoral muscles are not in the mood to give, and seem determined to keep their vise-like grip for as long as possible. Very slowly, and with lots of stretching, it is getting slightly better.  But the painful tightness, along with sharp pangs from scar tissue, will wake me up several times in a night.  I then have to get up to stretch, massage, and  probe the muscles and scar tissue, until I can sleep again. This means that not only can I not get a decent night sleep, leading to constant exhaustion, but I am in chronic pain.  As a psychologist at Sharsheret, who deals with chronically ill patients, told me recently, pain is one of the few things that will break a person down.  I certainly feel broken.

Tomorrow I return to my plastic surgeon to beg for real muscle relaxers (she seems tied to only prescribing diazepam, which is supposed to relax muscles, but simply isn't enough to relax my very tight muscles). The pain goes through my pectoral muscles, around my rib cage, and on to my back, making life very uncomfortable. If my plastic surgeon will not prescribe true muscle relaxers, I will contact my primary care physician. I need this pain to stop and I need sleep. I believe the Geneva Convention prohibits these type of conditions for prisoners of war, and I've got to get out of this concentration camp.

In December, I went through another set of scans, and based on my tumor markers and the scans, my oncologist has declared me stable. There are still two one-centimeter lesions on my liver, but Dr. Kaltman sees no progression, and so has proclaimed me stable, for now. And that is the depressing part of this, the for now. 

I met with a new gynecologist a few weeks ago. After the exam, she and her medical assistant stood side by side across the room from me,and the gynecologist asked me, "So what does your oncologist say is your prognosis?"

"What the fuck?" I thought. "This is Stage IV. What does this doctor think the prognosis is?"

Instead of saying what I was thinking, I simply replied, "My oncologist thinks it will come back." After that, I added, "My new life goal is to die of a massive heart attack, instead of cancer."  This is partly joke, but also frankly true. This is my new life goal. Strangely, the oncologist then went on to say what a benefit cancer provides, giving patients time to prepare for death and say goodbye.  

After a few minutes of her expounding on this subject, I replied, "All philosophy aside, would you, doctor, prefer to die quickly of a heart attack or to die a slow, lingering death from cancer?"  She answered that, in this case, she would probably prefer the heart attack.

I was left thinking that this doctor clearly has no notion of the emotional realities of living with Stage IV cancer, the fears of becoming totally disabled and of dying in pain.  And I began to regret my move to this new gynecologist, simply because I do not need yet another person making stupidly ignorant and painful statements to me about a subject of which they apparently have no empathy or experience.

I do apologize for not being my usual, bright, laughing at pain kind of self.  Sometimes pain is bigger than a person can handle.  As I told a friend who, when I told her my latest, had stated that I had been so strong until now, strength isn't about being feisty and in a stiff upper lip mode all the time. Strength is having the courage to bring your pain to other people, and then to allow those people to help you.  Right now I certainly need emotional support and I need better medications.   I'm praying I have the courage and strength to seek both. Here's to better living through chemistry, because right now, I damn well need it.