Collateral Damage

Dr. Susan Love published an interview on Medscape last week on the “collateral damage” of breast cancer treatments as reported by 3200 actual patients and not their doctors. She noted that doctors and patients often view things differently. For doctors, a living patient is the major sign of successful treatment. They don’t want to hear about treatment side effects that they can’t treat and cure, she says.

The patients and survivors are also happy to be alive but their quality of life may be severely impaired by chemo brain, depression, anxiety, fatigue, neuropathy, and hot flashes. She calls this collateral damage rather than side effects as often these symptoms are permanent, not temporary. She doesn’t mention breasts disfigured through lumpectomy and radiation, having no. breasts at all through mastectomy, or having a bad or failed reconstruction job. Presumably, these are just the regular damage to be anticipated from breast cancer treatment.

She reports that many survivors either weren’t told about these long term collateral damage effects or they were told at a time when they were so overwhelmed with other cancer information, that they were not able to absorb the message. Or if they did absorb the message, they were more concerned about staying alive than really thinking through how this collateral damage would impact their post-treatment lives.

The passages of her interview that really disturbed me the most were that chemo brain and neuropathy were forever. They don’t get better. You just get used to them and find your new normal. In other words, you stay numb and dumb forever. She could have added depression, anxiety, PTSD, and impaired body image to this list as they are often long lasting, sometimes forever.

I admit to being one of those who were told the “side effects” of chemotherapy (at least the second time around) and it was a blur of nightmare words and images ending with the ultimate side effect of death. Everything else was forgotten the moment it left the oncologist’s mouth. Thank God I took notes.

But nothing in my notes said that chemo brain and neuropathy were forever. Or that I would eventually wind up with PTSD and free falling panic attacks. Chemo brain was supposed to end with chemo. Neuropathy was supposed to eventually go away.

And no one told me just how bad a reconstruction job could be. So bad, that even oncologists and their nurses urged me to find a new plastic surgeon and get it fixed. I eventually did but after about 7 years, the implant inside the flap became encapsulated with scar tissue and is now a hard ball that juts off to the left of my body. My newest plastic surgeon is afraid to operate again for fear the whole reconstruction will collapse. So I walk around with a badly reconstructed left side and a right side that should have had the permanent implant put in it 3 years ago, dragging my feet about signing up for more surgery that will result in 2 mismatched breasts or even worse, 2 matching deformed breasts.

I had a male colleague at work whose wife had breast cancer shortly after I had my reconstruction revised. I even referred them to the plastic surgeon who performed the same back flap surgery with silicone implant that I had. I remember sitting in his office 2 years
after her surgery and listening to him complain how he could no longer make love to his wife as the surgery had left her “a hideous grotesque monster”. He was generally a very kind man and I think for a moment he forgot that I too had the same surgery. My smile froze on my face and I quietly left the room, stung to the core. It quickly put me in my place that no matter how much better the fake breast looked than before the revision, in some men’s eyes,
I would always look like a hideous grotesque monster. Yes, body image issues are forever after breast cancer.

I should note that he left his wife shortly after this conversation and is now remarried to a normal 2 breasted woman. From the Facebook groups I belong to, it seems many marriages end after a breast cancer diagnosis. So do many friendships. More collateral damage to add to the list?

I had dealt with chemo brain before way back in 1994 when it was a slang term that patients used but wasn’t really acknowledged by doctors as a true medical condition. I had short term memory loss and word problems way back then but I seemed to be back to normal 18 months post-chemo.

Ten years later, I woke up one morning with 2 fingers in my left hand permanently numb although I didn’t know it was permanent at the time. The neurologist couldn’t find anything with his shock tests so I was sent for a brain MRI.

All hell broke loose then when it showed that my brain seemed shrunken (now a recognized piece of collateral damage from chemotherapy) and was covered in white spots consistent with multiple sclerosis but in the wrong parts of the brain. I still spent 3 years at the ms clinic waiting for more symptoms or for my MRI to change. Finally, I was told it wasn’t ms and then spent the next 2 years seeing every medical expert in town for a cause for my numb fingers and unusual brain MRIs.

Someone suggested it could be a late arising radiation symptom. No one ever suggested it was from chemotherapy. I still don’t have a definitive answer but I truly believe the numbness and the weird brain MRIs are collateral damage from my first 2 cancer treatments, involving both radiation and chemotherapy. Given that the condition has remained permanent for the last 10 years, I suspect my neuropathy is forever. And no, I’ve never gotten used to it or found my “new normal” in dealing with it. It makes me angry and frustrated that these symptoms showed up years after active cancer treatment. What other long-term “gifts” does cancer have in store for me down the road?

I had chemotherapy again in 2011. Suddenly chemo brain was a real condition that oncologists talked about seriously. I don’t recall being told that it could be a permanent condition. For me, the chemo brain has in fact improved significantly but it still rears its ugly head in times of stress or fatigue (and sometimes for no discernable reason at all). It seems to have stabalized about a year ago and I always assumed it would keep getting better as time went by.

But now reading that chemo brain can be forever, I am left wondering if this is as good as it gets. Will I always be plagued with a brain and tongue that don’t connect or a brain that has much poorer short term
memory than it did before the second chemo? Some women have written in the comments to this blog that they suffer from radiation brain with the same symptoms as chemo brain. God help me if this is true, as I have been radiated twice along with my 2 bouts of chemotherapy. My brain must be the size of a peanut by now, covered with even more white spots and less grey matter.

It is clear that research money has to go into ways of dealing with the collateral damage breast cancer treatments leave behind as well as trying to prevent the damage from happening in the first place. We don’t need more awareness of breast cancer. Everyone is aware. We don’t need to use race money to fund more races. We need to find ways to help with these survivorship issues. And even more importantly, we need research money for a cure for metastic breast cancer, the only breast cancer that actually kills.

Sharon Greene March 10, 2015

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Happy Holidays From Cancerland

It is almost that time of year again. The shopping malls have been decorated for Christmas since Halloween. Almost every radio station is playing Christmas music around the clock. If you have young children, they are excitedly waiting for Santa to come and visit. If you have preteens or teenagers, they are preparing their holiday wish lists and fully expecting Mom to buy them every item, no matter how high the cost.

Christmas movies paint a serene picture of the family hanging stockings together, opening the perfect presents (no socks or underwear) under a magnificent Christmas tree, and gathering together at a table groaning under the weight of every food imaginable. Some families probably do have Disney worthy Christmases but for most of us, there are some less than picture perfect moments.

I recall Christmases where my daughter was so excited, she threw up under the Christmas tree. Then there were the Christmases of my youth where people would start drinking too early and by dinnertime would be rude and belligerent. (This was also usually accompanied by someone throwing up). The presents were often bought during the peak of the holiday shopping season in understaffed stores filled with testy shoppers, creating huge amounts of stress. The feast on the table was often prepared by one woman, usually Mom, who baked cookies for weeks and was up at the crack of dawn preparing the turkey and side dishes. The poor woman was so exhausted by dinnertime that she couldn’t even enjoy the food she had so painstakingly prepared.

These less than perfect holiday moments can be enough to throw a healthy person into a tizzy. Now throw breast cancer into the mix and it is easy to understand why many patients and survivors dread the winter holiday season.

It isn’t just Christmas or Hanukkah that bring forth these feelings of anxiety and dread. Thanksgiving, children’s birthday parties, New Year’s Eve, and anniversaries can also be difficult times for patients, survivors, and their families. Although this post focuses on Christmas, it is called “happy holidays” for non-politically correct reasons. The issues outlined below can surface on any special event where people are supposed to be celebrating with others and the expectation is that everyone is filled with happiness and joy.

If life was fair, cancer would be diagnosed or treated on a calendar system in which these events would only occur at the least stressful times of the year.  I was going to say they would only occur at a convenient time but there is no convenient time of the year to have cancer.

Unfortunately, people receive cancer diagnoses or news of recurrences or metastases year round, including right before the Christmas season (or other important events). The shock of receiving this kind of news makes it difficult to want to celebrate and be festive with distant relatives or friends. As well as trying to process the bad news, there is often a sense of guilt about ruining everyone else’s Christmas/Hanukkah/Kwanza if you talk about cancer. Somehow rushing around the mall for presents or cooking a major meal seems trivial and pointless in the larger sense of the life and death issues you are facing. You may not be ready to share your news with the extended family, yet at the same time, cancer is all you think about. New Year’s Day with its emphasis on making resolutions for the year ahead

can bring on depression if you are worried that this may be your last year alive. Even if you don’t anticipate dying, it is hard to make positive resolutions when you know you will be spending much of the new year facing surgery, chemotherapy, and/or radiation treatments.

For those already in treatment or recovering from surgery, there are even more challenges to face. You feel unwell. You ARE unwell. All the preparations for the holidays are too overwhelming to cope with. There is no way you will be baking, cooking, and cleaning, to prepare a feast for a crowd of people. Even preparing a simple Christmas meal with only your immediate family may be enough to knock you out for the next few days.

If you are having chemotherapy, the smell of certain foods may make you feel nauseous. Chemotherapy often affects the taste buds making even favourite foods taste unpleasant. Painful mouth sores can make any kind of eating feel like torture. Fatigue and loss of appetite are also common side effects of chemotherapy. Finally, you may be warned by your oncologist to avoid crowds as your immune system is weakened. Shopping malls and large family gatherings may be more than just exhausting. They may make you so sick, you end up hospitalized. This happened to me 3 years ago and I spent the entire 4 day Thanksgiving holiday in the hospital with a fever and a white blood count of zero.

Radiation treatment and surgery bring on their own challenges. As well as feeling exhausted, you may be in pain from radiation burns or in all the places where the surgeon cut into your body. You may be taking heavy duty painkillers that wreak havoc with your mind, appetite, and digestive system. You may not have the energy to sit up for long periods of time socializing and making small talk with people you are not especially close with the rest of the year.

Even when active treatment has come to an end, the depression and anxiety associated with losing your medical safety net can leave you feeling less than merry or jolly. The holidays are difficult for most depression sufferers as the rest of the world looks so happy while you feel hopeless and miserable inside. Your fears of a recurrence or metastasis may be heightened right after treatment has ended and the oncologist says, “see you in 3 months”. It’s a scary time as you try to transition from full-time cancer patient to finding your “new normal”. People may be expecting you to bounce right back to your old life once treatment ends. You may feel like you still have one foot in the cancer world and the other foot in mid-air, looking for a safe landing spot in the post-treatment land.

BRCA1 and BRCA2 families have their own special problems with family celebrations. They may be grieving the loss of those relatives who were taken from the world too soon because of cancer. Those who are previvors may worry about their own upcoming surgeries or question their decision to opt for surveillance. Watching the young children and teenagers of their extended families, they may worry as to what lays ahead for them in the future.

For some people, the holidays may still be fun and joyous as it is a welcome distraction from thinking about cancer. You may welcome the break from the trudgery of treatment. Depending on the type of gathering, you may only be surrounded by the people you love most in the world and find their company soothing and comforting. Particularly if you have children, you may make an all out effort to give them great Christmas (or birthday) memories just in case things go terribly wrong and you want them to remember you as something other than a sick Mom.

With my 4 cancers, I have been in diagnosis, treatment, or recovery mode on every major holiday and special event over the years. During Cancer 4, there was Thanksgiving in the hospital, my then 11 year old son’s birthday party at Chuck E. Cheese, and my then 9 year old daughter’s birthday party at a go cart track on a very windy day, while clutching onto my wig for dear life! It wasn’t always easy and it wasn’t always fun, but I’m glad we made some good memories on those occasions. Christmas and my birthday also fell during chemotherapy but both of those events were very low key affairs as that was all I was capable of doing at the time.

The truth is nobody actually lives in a Disney movie, not the healthy and not the sick. Christmas or Thanksgiving or your birthday can be whatever you want it to be and whatever you are capable of doing. If you want company and all the trappings of Christmas, see if someone else can do the heavy lifting for you. Instead of you making the dinner, see if someone else can host Christmas this year. Or choose to celebrate more casually with your immediate family at home or at a Christmas buffet in some fancy restaurant where you won’t be forced to make small talk with a relative you barely know.

To cut down on holiday stress, avoid the shopping malls and make all your purchases online. Spring the extra few dollars for them to be gift wrapped. Let your children decorate the tree however they want, no matter how untraditional the results may be. Do everything you can to pamper yourself, whatever that may look like to you. Get a lot of rest, take deep breaths, and don’t be afraid to reach out to someone, anyone, for help. Create a holiday that brings you peace instead of stress, joy instead of anxiety, even if it means abandoning all your former ideas of what a traditional holiday should be. Happy Holidays to everyone in Cancerland and to all the people who love them!

Sharon Greene December 11, 2014