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