Friday, September 9, 2016

Advice Columnist Puts Breast Cancer Patient at Risk with Bad Advice

Problem: A 75-year-old friend has experienced a serious health decline. The elderly woman is battling breast cancer. Reader contacts nationally acclaimed advice columnist, worried that the friend has dementia.

Symptoms: The patient forgets to eat, which leads her to lose consciousness in public. She has been hospitalized for malnutrition and dehydration. She is forgetful and repetitive in her conversations and written communications. She appears to be increasingly frail and unkempt.

Patient's support system: Never married and without children, she has one sibling, who is aware of her decline and wants her to move to a "retirement community". Other possible support comes from the reader and associates at the company that formerly employed the elderly woman. They want to suggest that she hires home care help while she considers a "retirement home".

Advice columnist's view: Talk to the friend (who is having communication issues and may not comprehend). Do some research through the local office on aging and present the patient with options that will allow her to remain at home (assuming the dementia diagnosis is accurate). Try to visit frequently. Do things with the elderly friend. And if things are dire, contact the sibling (presumably to intercede).

On the surface, it all sounds like a good working plan, except for one thing. The 75-year-old woman is battling breast cancer.

In the past year, I've lost two family members to cancer. I've also been there for two cancer surgeries for another relative. And, sadly, I had a beloved relative who had advanced breast cancer that was never diagnosed, despite multiple visits to her physician and complaints. When that breast cancer spread to her bones, every bit of her body ached and she suffered enormously. She could have been helped by proper cancer care, but because she was elderly, she was treated for age-related issues. That is a lesson I will never forget, because the people who loved her were unable to help her. When the aches and pains an elderly person experiences are chalked up to arthritis, dementia, or any other age-related issue, that patient will not receive the appropriate treatment. There will be no palliative care for the pain, no treatment for bone mets, and no help with issues such as nutrition and hydration.

So, what did I do when I read the advice from the nationally recognized advice columnist? I contacted her, pointing out the very real possibility that the problems the elderly woman was experiencing were actually the result of the breast cancer. It might have invaded her brain. That's not an unusual thing with breast cancer, is it?

There is also the very real possibility that the decline in mental function was the result of powerful chemotherapy drugs and/or other treatments. Many breast cancer patients are familiar with the annoying and debilitating effects of "chemo brain."

Anyone familiar with cancer patients and the challenges they experience knows that the malnutrition and dehydration issues raised by the reader can be symptomatic of the breast cancer. That's why many cancer centers have nutritionists that work with families to assist in providing nutrition to the patient that is tolerable under the circumstances.

And let us not fail to consider that this 75-year-old breast cancer patient could be depressed with her circumstances. Having breast cancer can bring the strongest of us to our knees. I have a number of friends who are breast cancer survivors, married and single. They have shared their insights in ways that are now permanently etched on my mind and in my heart. Having breast cancer can be a very lonely, isolating experience. Good support is critical in surviving the brutalities of the disease.

The response to me from this nationally acclaimed advice columnist was less than stellar. She was offended. She took umbrage at my response to her advice. She tossed in a tiny little, "could be the cancer", which was apparently meant to make her appear to be flexible on the subject. But she stuck to her guns that her advice was appropriate. It wasn't. Why?

By sloughing off the 75-year-old woman off as being elderly, she had actually provided harmful, not helpful, advice (which raises the question of liability should the 75-year-old breast cancer patient be involuntarily hospitalized for dementia if the cancer is causing the problems). She allowed the "dementia" label to stand. She didn't correct the reader or open the possibility of some simple ways to help the cancer patient.

What would be MY advice? First and foremost, if a woman is battling breast cancer, recognize that's a medical diagnosis. That means somewhere, at sometime, an oncologist has treated the disease. We also know the patient has been treated for malnutrition and dehydration in a hospital. Is she still being treated or did treatment end? A scan could reveal a brain tumor pressing on the part of the brain that involves executive decision-making, for example. That's not a matter of guessing that the patient has dementia. That's a medical opinion backed up by scientific testing. Has that been done?

Hospitals and medical centers who treat cancer patients normally have cancer navigators, patient advocates, social workers, and a myriad of other support services that can assist a 75-year-old woman who lives alone, but has people to care about her. There is no need to go to the local office on aging for advice on anything.

But there's a glitch, a very big one. HIPAA laws prevent unauthorized people from getting information on a patient's situation, and rightly so. Obviously, the reader and her associates can't call the medical center to find out how they can help. The 75-year-old breast cancer patient's sibling might be able to do so, however. Normally, if someone is that debilitated by illness, a relative is essential in helping to navigate medical treatments, insurances, and other related issues. What is his involvement? Does he have power of attorney? Does she have an independent conservator? Who is helping this woman get through her treatments (or is she struggling on her own)? That's the "go to" person. Every cancer patient needs one.

Thus, the best starting point would be finding out who is the "go to" person for the elderly friend. Who accompanies this woman to her treatments? Or has she been struggling with this issue by herself? Has she stopped treatments because she's been too debilitated to get herself there? Is she terrified she's dying and in denial? The reader and fellow co-workers could offer to drive her to and from treatments, couldn't they? They could volunteer to stay with her during her treatments. They could be there when the side effects sideline her. They could find some positive ways to improve the quality of life for the patient that address her real needs, not her assumed needs. But they need to know who the "go to" person is and coordinate.

The minute anyone reads that a person with a cancer diagnosis has experienced a decline, it automatically becomes a medical issue. Whether it's the cancer, the complications, or the stress of the disease, it's critical to properly assess the patient's condition, setting, support system, and services. No 75-year-old woman should be assumed to have dementia based on the observations of well-meaning, but untrained lay people.

The greatest danger that this 75-year-old woman faces is that she will be placed in a skilled nursing facility by her sibling because it is assumed her mind is failing due to dementia. If the real problem is that her breast cancer has metastasized, she could suffer through what remains of her life. She could be medicated with drugs used to treat dementia and not treated with drugs that would provide comfort at the end of life.

But the one point I would make here is that we don't know what kind of relationship this 75-year-old breast cancer patient has with her cancer team. For all we know, they have done all the tests, diagnosed the disease accurately, and treated the patient humanely. If that is the case, perhaps what this patient really needs is the love and support of family and friends. Maybe she doesn't know how to ask for it. Maybe she doesn't know she can get it. So often, communication is a critical tool for a cancer patient, whether it's talking to the oncologist or explaining problems outside the hospital setting. That nationally acclaimed advice columnist should have suggested that the reader and her associates find out more about how to help a woman dealing with breast cancer. There are plenty of good resources for that, ranging from The American Cancer Society to #BCSM, better known as Breast Cancer Social Media, formed by the late (and wonderful) Jody Schoeger and her social media partners, Alicia Staley (a great cancer advocate better known as Awesome Cancer Survivor) and Dr. Deanna Attai, a well-respected surgeon on the UCLA Breast Care Team.

I mentioned Jody Shoeger because I had the pleasure of interacting with her at a cancer blogger conference out in Arizona several years ago. She was the epitome of a wise and caring counselor for breast cancer patients, often reaching out to those who felt marginalized, isolated, and alone. She taught me about making assumptions one day, by correcting me -- not all breast cancer patients have adequate support. I will never forget one post from her. She let a breast cancer patient anonymously share her painful personal story of being shunned by her husband once she was diagnosed. I have never been able to let go of that tale. It follows me wherever I go. It makes me determined to speak for those who don't have the strength or the confidence to ask for help. I owe it to Jody now to share this with you. If you know a woman who is battling breast cancer, don't throw your money into all things pink. Reach out and help in real ways. Learn what life is like for breast cancer patients and find out what you can do to help improve quality of life for a woman who is struggling. That's what a real friend does.

Friday, April 15, 2016

Caregiver Strategies for Continuous Cancer Management

“Cancer police! Freeze, sucker!”....Imagine finding out that your late-stage cancer has been chased down throughout your body by your cancer team and stopped. With its hands in the air and no place to go, the disease that has ravished your body and soul just stands there like a surly, unrepentant career criminal, contained for the moment and hopefully going away for a long stretch in a maximum security prison. What happens now?


In real life, a criminal investigation is followed by a trial, with prosecutors and defense attorneys arguing back and forth, presenting motion after motion, deposition after deposition, and witness after witness. There are forensics, surveillance videos, and phone records introduced as evidence. Some cases can drag on for years before they get to trial and the judge hands down some semblance of justice. Victims can feel victimized over and over again by these brutal and unfair circumstances and often face the prospect of living with that terror on an ongoing basis, never knowing what dangers lurk in the shadows.


Most cancer patients get treatment that either works or doesn’t. Doctors make their decisions based on what’s going on in the body at that moment in time. Standard protocols are carefully monitored. Everything is based on what has been learned through clinical studies. There are patient scans and tests to determine the extent of the damage caused by cancer. Doctors will argue for or against this treatment or that one, often with contradictory opinions.


But new research that arrests cancer in its tracks is churning out a new kind of cancer patient who needs ongoing treatment to maintain the status quo. You’re no closer to a cure, but you’re also no closer to death -- you’re in limbo as the ongoing treatment process continues to hold cancer at bay. It’s like serving some kind of twisted “life sentence without parole” for the person most affected by the disease.


How does this work? What if the doctors told you that you could continue living, but only if you stay on a harsh chemotherapy regimen for the rest of your life? Instead of a set number of chemo rounds, followed by months of recovery time, you’re told you will now going to have ongoing treatment every month. Expect to deal with significant side effects with every dose of chemo. How do you cope as a cancer patient and find peace in the face of such a cruel reality, especially when you know there will be no reprieve any time soon? And how does your caregiver give you the kind of care and support you need to get through that rigorous routine?


I first came across this dilemma more than five years ago, when I met a Stage IV stomach cancer patient, who talked about the rigors of his cancer survival plan. Every day, for the rest of his life, he would have to face the side effects of a very powerful drug that left him with balance issues, muscle weakness, nausea, and other unpleasant hurdles to leap over on an ongoing basis. Every night, right after dinner, he would take his medication and hit the sack, totally wiped out. This once-vital man still took vacations with his wife, still tried to work part-time, but it was a genuine struggle just to maintain that status quo and get through the day with continuous cancer treatment. His wife was his dedicated caregiver. It was easy to see just how committed they were to each other. He had once saved her life after a horrific car accident; now she was returning the favor. What was their secret for success? They consciously accepted the harsh realities of the treatment he faced and together they conscientiously worked their way through the problems, one issue at a time, making adaptations as needed.


Since then, I’ve had conversations with other cancer patients in similar straits because I want to know how we cancer caregivers can improve the care we provide. We need to understand the pitfalls and benefits of ongoing cancer treatment, what it does to the quality of life for those we love, and how it affects daily life for those directly impacted by it.


Now, thanks to cutting edge research, some cancer patients are finding out that having an incurable cancer is no longer a certain death sentence. In some instances, the disease can be contained, but that option comes at a great personal cost. There will be ups and downs during continuous cancer treatment. Just as one round ends, another will begin; when that one ends, another will follow. That means no break from the grueling side effects, no time off for “good behavior”. It takes a tremendous amount of courage to decide to proceed forward with that kind of treatment plan.


We caregivers need to mitigate as many of the debilitating aspects of this as possible, so that our loved ones can continue to achieve their goals, follow their dreams, and be involved in the activities that make them feel whole. We want them to have enough quality of life so that they feel satisfaction in their lives and they are able to cope. We must work to tamp down the negative outcomes and boost the positive outcomes.


I’m convinced this calls upon us to become a new breed of proactive caregivers -- wiser helpers who provide more effective support for patients whose treatments are continuously evolving. Good cancer caregivers understand that there are some necessities we must provide to our loved ones if we are to be successful. These include:


Comfort for the physical and psychological pain --


When we know what is causing the greatest distress to our loved ones, we can better reach out to the cancer team to identify the solutions and apply them quicker, whether it’s palliative care for pain, better nutrition options that make food more palatable and digestible, or adaptive tools to overcome physical and mental limitations that interfere with the normal activities our loved ones want to take on


Companionship that continually nurtures the soul --


When our loved ones constantly need help from us in order to function physically, we caregivers give it; it’s important to recognize that this creates a serious imbalance in our non-cancer relationship and we need to periodically return to that on good days, to embrace the essence of our “old” selves again, to laugh and have fun together like in “the old days”, throughout the caregiving process


Compassion for all the frustrations, worries, anger, and sadness that get in the way of living a normal life with continuous cancer management --


When we know what hinders our loved ones the most, we can seek ways to overcome these challenges in meaningful ways that empower our loved ones again and again, by tapping into the hidden strengths and minimizing the weaknesses that get in the way of success; in this way, we empower our loved ones to experience moments of satisfaction that are born of their hard-fought determination to succeed despite the obstacles that stand in their way


Commitment to making this partnership work for patient and caregiver --


As we focus on the role we play as facilitators, we recognize our responsibility to do what our loved ones need done and we don’t take charge of the disease; we consciously put control back in the hands of the people who most need it -- the cancer patients who have been thwarted in their efforts to live their lives as they so choose; at the same time, we must also recognize our own need to stay healthy and active, so that we can function as effective help mates


I’ve talked about the four stages of care on my website, The Practical Caregiver Guides. They are:







Learn more here: Four Types of Care


Many cancer patients need temporary caregiving, especially when the cancer or the treatment side effects hamper normal activities, but once that’s over, so is the need for a cancer caregiver.


Some patients need serial caregiving over time, especially when the cancer recurs or metastasizes. The caregiver steps in to help when a loved one is struggling, but when things are good, the caregiver steps back, with the understanding that there may be a need again in the future.


Some, especially people with late-stage cancers, need progressive caregiving. They know they are likely to continue to lose function because the disease is gaining on them. Eventually, they will enter a hospice program, for end-of-life care.


But what comes between serial and progressive care, when a loved one’s cancer is still present, but managed with continuous treatment? Your loved one will be repeatedly going through the same cycles of treatment and side effects over and over again, without being able to go off the medications. As harsh as this will be on the body, it will be even tougher on the psyche. Life has to be “good enough” to endure the hardships. It becomes more important than ever for the cancer patient to feel invested in his or her life, to able to achieve personal goals, make dreams come true, and experience a sense of satisfaction and fulfillment.


The biggest challenge for a cancer patient and caregiver over time is likely to be the cumulative effect of the rigorous, never-ending treatment on daily life. It will be important to stay focused on the positive and find ways to remain aware of what is working, in order to help your loved one face a future of living in limbo. The better you understand the physical, psychological, and personal aspects of this situation, the more likely you will be to attend to issues as soon as they creep into the picture. Being proactive means understanding as much about your loved one’s cancer as possible.


What are the side effects of the particular treatment your loved one must undergo to keep the cancer in check?


If you knew that once a month, you would have to indure a horrible week in order to have two or three good weeks, would you be confident that you could get through it over the next month, the next year, or the next decade? When you’re facing a cancer diagnosis that includes rounds of chemo, radiation, and even some surgery, you are likely to talk yourself into getting through the treatment because you expect a positive outcome when it’s all over. But for cancer patients who have a “life sentence without parole”, there is no real light at the end of the tunnel, no pot of gold on the other end of the rainbow. It’s important that we, as caregivers, we recognize the real hardship of this kind of life, and it’s vital that we find ways to help our loved ones achieve as much quality of life as they can under the circumstances.


What are the actual cycles of these side effects and how can you help to alleviate the brunt of the rigorous treatment?


As overwhelming as it is for our loved ones to contemplate a seemingly endless life of ongoing cancer treatment, our efforts to recognize their worries and find meaningful solutions not only provide comfort, both physical and emotional, but also keep us focused on seeking answers. Sometimes a little medical information can make a difference. What if your loved one is not hydrating as much as the body needs? That’s likely to make chemotherapy more difficult to endure. What if your loved one isn’t able to eat? Working with a palliative physician to control physical symptoms and a cancer nutritionist to tweak food choices can make a huge difference.


But what if your loved one is terrified about the future and is convinced that continuous treatment is a losing proposition? By recognizing the emotional chaos and sorrow that this kind of diagnosis brings to a cancer patient, you are more likely to find ways to help your loved one remain engaged in the effort. Patients who feel satisfaction with what what they are doing will feel life is worth living. Patients who don’t have that are more likely to quit.


How big a factor does guilt play in your loved one’s cancer experience?


Believe it or not, cancer patients often feel guilty that they need the help of caregivers. They can often convince themselves that we are wasting our time, our energy, and our talents on caring for them. When guilt interferes with our efforts to assist, our loved ones will sometimes withdraw, believing that they must do things for themselves, even when they don’t have the strength or stamina to do that. How can we help them to let go of their anxieties? We can share our honest thoughts and feelings.


There are times that caregiving becomes difficult for us -- that’s a given. But for those of us committed to the process, we want to be there for our loved ones. That’s why we need to find our own support system, one that will continually help to recharge our batteries and to empower us in our responsibilities. If your loved one feels guilty that you are spending too much time providing care, those feelings are likely to resolve if he or she sees that you are still achieving your own goals and finding satisfaction in your own activities.


What can you do to live as healthy and active a life while your loved one undergoes this treatment?


Tired and frazzled caregivers can actually pile stress onto overwhelmed cancer patients. By taking responsibility for our own limitations, be they time constraints or too many responsibilities, and for our attitudes, which can negatively affect the people who need our help, we are forced to look for better resources. Sometimes it means we have to reorder our priorities and let go of things on our “to do” lists that just aren’t that important. And sometimes it means we must really go deep and analyze the way we are providing care to our loved ones, so that we can better meet his or her REAL needs.


How can you help yourself to understand how your loved one’s cancer impacts the quality of life for him or her?


With an eye towards making things work better, you can ask yourself what your observations are about your loved one under the circumstances. Believe it or not, a lot of cancer patients are proud of their own efforts to get through difficult experiences without breaking. Just as an experienced marathon runner takes the race in stride, sweating out the hill climbing and breathing a sigh of relief on the downhill descents, cancer patients can and should recognize just how amazing they really are in times of trouble. Don’t be afraid to praise real efforts your loved one makes. Don’t be afraid to admit that you are in awe of your loved one’s determination to live life out loud!


You can find more help for cancer caregiving at The Practical Caregiver Guides

Sunday, February 14, 2016

Dogs, Cancer, and Caregiving

It was just happenstance. I set out to put together a bibliography for readers of cozy mysteries (think Agatha Christie) that feature dogs. I did my research over two days' time, searching various sources to come up with a respectable list of canine characters in fiction. Once I had all my information in order, I posted it to my cozy mystery library site. And that's when it happened. Someone threw me a curve ball.

It came in the form of a request from an author of dog mysteries. She wanted me to include Susan J. Kroupa's Doodlebugged Mysteries on my bibliography. It sounded great until I checked out the books and saw they were listed as kiddie lit. I was doing an adult bibliography. How could I diplomatically navigate this conundrum without offending anyone? I decided my best bet was to do some research. Maybe I could start a "junior cozy mystery" list. Or I could come up with a respectful reason why I couldn't include it. I had to try to find a reasonable solution.

The funny thing was that I found a lot of adults loved the series and thought the books were well-written and amusing, with enough adult elements to make them work as cozies. They also thought the books were fun to share with kids and grandkids. But what does this have to do with cancer?

My research wasn't done yet. In addition to providing a list of books, I also like to help readers connect to authors whose books they may enjoy reading. That meant I had to find Susan's website. I flipped through a couple of her pages, looking at her books and bio. We had some things in common. We were both librarians at one point in our lives. We're writers, nature lovers, and dog fanatics. Then I clicked on her blog. And that's when I found it:

What Love Looks Like -- Susan J. Kroupa

I saw that photograph of her daughter, Sarah, holding a baby. Sweet-faced. Mother of five. Colon cancer stole her away just before Christmas.

My heart sank because it's a story I know too well. I still remember Michelle and her extraordinary battle to defeat the monster that is colon cancer. I still remember my amazing cancer friend's effort to pour as much living into her last year of life as was humanly possible. There were so many trips, so many photographs, so many things Michelle did with her family to remind them of her unending love before she left them. Here was another young mother with another amazing family.

But when Susan wrote about her daughter's battle with cancer and eventual death, she didn't write about the sorrow. She wrote about the love that their community shared with the whole family. She wrote about how people came together to support them in ways that I wish every cancer family could have. It's a wonderful testament to what we can and should do for those in our circles who are in need.

So I am sharing Susan's link with you now, not because she wrote extensively about what to do and how to do it, but because she managed, in a very short piece, to capture the spirit of generosity that really is the face of love. This is real giving at the heart level. People got it right at the right time. They stepped up to the plate. If we could bottle this and sell it, it would be a tonic that could soothe the most discomforted soul. It will never take away the pain of losing a daughter so young, but it obviously made a difficult and challenging time less so. This is inspiration for every cancer family. Don't give up, reach out. Ask for the right kind of help for your family, for yourself. Know what you can and can't do realistically and don't be afraid to say you need more help. Susan can tell you what happens when you recognize that need and people respond.

You never really know what lies beneath the cover of a book until you open it and read. Everyone has a story. I'm glad I was curious enough to learn more about an author and I'm glad to share this with you. Maybe someone else's life will be made better by the story of Susan's daughter because readers like you will see the possibilities and act. Don't be afraid to be the love.

Friday, February 5, 2016

How I Spent World Cancer Day

I admit it. I was doing other things than posting about World Cancer Day on February 4, 2016. I know I probably should have gotten out there and generated a lot of publicity for the event, but the truth is I was busy doing other things.

It's not that I didn't think about cancer. Cancer is never far from my mind, not with all the people I adore who are in various stages of treatment and disease management. To them, it's an everyday thing. Cancer is never far from their thoughts.

No, I spent World Cancer Day out of the loop. For me, it was much more important to find out how a friend's sibling was doing after a stem cell transplant. What had changed for him in the months since he underwent the grueling process? Was he finally getting back to doing what he wanted to do, live his life? Had there been drawbacks to the treatment? Had there been benefits? I listened to my friend talk about what was still difficult and what was now easier. The one thing that really stood out was the growing closeness between siblings as they bonded during the caregiving process.

But I also spent time thinking about another friend, a long-time cancer survivor who has spent years reaching out to everyone, using yoga to do it. In the years since we first met, she seems to have grown a heart as big as Cleveland, embracing people in arms that seem to stretch across the miles, welcoming the shy, the reluctant, the hesitant into her circle. That's a beautiful thing to see.

And I was glad to see another cancer friend, who has spent the last year in a fierce struggle to find the right treatment that would not only prolong her time on this earth, but also give her the quality of life she so rightly craves, engage in normal pursuits. No longer do all her FB posts now involve her disease. She is getting back to her passions, making beautiful music again and teaching students who will go out into the world and make it better.

But it's not necessarily the same for another friend, one whose breast cancer has spread. Instead of having the time and energy to reach out to all those other breast cancer survivors who count on her sage advice, she is spending her days at the cancer center and her nights recovering.

I also thought about the friend of a friend, a woman I know only from her very sweet, compassionate posts in a cancer circle. She's been so quiet lately. It's hard not to worry about her. Only last year, she was enthusiastically planning a flower garden.

And I thought about a recent loss, about someone I loved who was hit smack dab in the face with a diagnosis of pancreatic cancer. We thought we might have a few months with her. I had already begun to think of ways I might help her, what I could do to support her. Before I even had the chance to start, she was gone. We call that "dying from complications", but any way you look at it, it's cruel. We don't really get to say goodbye the way we wanted to, planned to, expected to, all because life was snatched away in the blink of an eye.

And that is always followed by the aftermath, the grieving period. On the one hand, you tell yourself, she could have spent months suffering. On the other hand, it was quick, merciful. We wish we had more time. We wish we could just rewind our lives for some extra moments to remember.

So, my apologies to all the entities who reached out to me to promote World Cancer Day. The truth is cancer was never out of my thoughts. I am grateful for the progress in cancer treatment that has helped some of my friends and relatives get back to the business of living. They are still here, still amazing me. But I wish that there was greater progress for all cancer patients. The current expectation that one out of three people will get cancer at some point in their lives is a frightening one. It means we all know someone with the disease. But there are also more than a hundred different types of cancer. We should always remember that not all cancer is the same. Some types are curable, some are well managed over time, and some come like thieves in the night and steal the lights that illuminate our lives, leaving us in darkness and sorrow.

But above all, when we think of cancer, we should never forget that people are not their disease. The next time you look at someone with cancer, remember to see beyond the ravages of the illness. Look into those eyes and see the soul. Get lost in that wonderful smile. Let the music of laughter set your heart on fire. Some people will survive their cancer, some will not. But as long as they are with us, there is life. Live it in spite of the cancer. Don't hold back. Don't be shy. Don't hesitate. Tomorrow is promised to no one. There are no guarantees. Be here now and recognize the good in every moment, but do it with a circle of like-minded people who know how precious life really is. Never take it for granted. Never assume there will be other opportunities to get around to saying the things that are in your heart, in your head. You never know when things might turn bad.

Then again, sometimes things turn good and because you lived in the moment and spoke the truth about what matters most to you, you are that much closer to being the person you want to be -- not defeated by cancer, not destroyed by cancer, but made whole by the wonderful people you have had the chance to meet on the road. And they are so much more than their disease. Cancer will never take that away from them, even if it takes them away from us.

Thursday, December 17, 2015

What Pancreatic Cancer Took From Us

Dying from day busy with holiday shopping and ordinary errands, the next irreversibly transformed into a shell of herself, all because of unexpected developments that seem to accompany some of the more difficult cancers to treat.

It’s a shock for all who knew and loved her. Less than a month ago, she finally discovered why she hadn’t really felt well in a while. Not only was she diagnosed with one of the most difficult cancers to treat -- pancreatic cancer -- she was Stage 4. At best, she might buy a few extra months to get her affairs in order and say her goodbyes with chemotherapy. There was a slight possibility that she might enter clinical trials and discover some small miracle that knocked back the cancer enough to allow her to enjoy a little more time, a few more moments of joy. But there was also the very real possibility that palliative care would be the only real Band-Aid for what ailed her.

The shock of such a brutal diagnosis coming just before Thanksgiving was hard for those of us who loved her to accept, but it was especially difficult for her. It came as the great holiday season commenced. This was her time of year. She adored decorating her house. There were tiny little Christmas scenes everywhere -- miniature cottages set upon white batting on tabletops and snowmen tucked into nooks and crannies. There were always decorative candles scenting the air, pine cones and boughs draped on fireplace mantels, and angels on high. She even scattered little treasures throughout her winter garden. The walk up to her gingerbread-like house on a snowy night was magical, especially enhanced with the tiny twinkling lights she draped here and there.

She loved shopping at this time of year, whether it was for people or pets. She was the only person who always remembered, after my mom died, that my dad likes real handkerchiefs. Every year, she would make sure he had new ones. She made sure that cats and dogs had toys that would offer hours of playtime that would amuse their pet owners. She took great pains to shop for the people she loved. I thought about that the other day when I donned a fleece top she had given me more than ten Christmases ago. I am reminded of her every time I pull it on over my head.

The last time I saw her was at her son’s wedding a few months ago. We spoke on the phone a few times as the countdown to the ceremony began. She was ruminating on the fact that the planning and execution of the wedding was an exhausting process. Did she really want to wear silver shoes and a lace dress? I told her she would look lovely. I advised her to smile and focus on having a good time, because that’s what her boys would remember years from now. I had no idea it would be the last time we would all be together for a happy occasion. There was so much fuss, she lamented. She remarked that she would be glad when it was all over and she could relax again. I think that was indicative of what was happening to her body as the secretive cancer began to spread. She wasn’t feeling quite right, but it was the kind of feeling that was too vague to be remedied. The symptoms could have been anything. That’s the trouble with pancreatic cancer. By the time the doctors figure out what the trouble is, it’s often too late.

That wedding, in the end, will be our salvation in many ways. I am so grateful we had that chance to gather. It was poignant when the mother of the groom took to the dance floor with her son. It was even sweeter to see her out on the dance floor, wiggling and wriggling as the sound system pounded out a steady beat. She was smiling and laughing, laughing and smiling. That is how I will remember her.

But I will also remember the tremendous tribute to her motherhood that came in the form of her two sons at her bedside during her sudden and unexpected final hospitalization. There, in her hospice room, these fine young men took turns watching over her, making sure that she was as comfortable as possible after the heart attack and stroke robbed her of her faculties. Their compassionate efforts were testimony to the love she raised them with and the time she dedicated to their upbringing. As her new daughter-in-law gently leaned in to check on her breathing and cover her up when the blanket was kicked away, I realized her son had chosen a bride who would stand with him in difficult times. But I also watched another young woman, newly engaged and soon to join the family, gently place her hands on the bedridden patient whose life was about to end. This dying woman would not be there to share the joy of seeing her second son marry the woman he loves. She would not have the chance to dance at another wedding because cancer caused these terrible, irreversible complications. My father keeps saying she would have been a wonderful grandmother. It’s too true. She would have thrilled at the prospect of that. She would have loved to spend hours outdoors with little children, working in her garden as they napped in their playpen in the shade on a fine summer’s day.

That is perhaps the hardest thing to accept about her untimely death -- all of the experiences she never got to have, all of the joy and the laughter she dreamed she would someday know. It’s so easy to imagine what would have come next in her life if cancer hadn’t come knocking at her door. It’s so easy to picture all of the activities that would have brought family and friends together to celebrate the good things in life.

It will take time for all of us who knew her to find our equilibrium once more. There is no denying that there is a hole in our circle now that she is gone, never to return. But I hope that with time, those of us who love her will find ways to keep her with us as we gather. We will recall her passion for cooking that set amazing meals on her table, her endless hours of nurturing her charming cottage garden, and her love for Christmas. With every passing year, we will incorporate a little more of her goodness into our own lives, finding ways to share the warmth she brought into our lives by offering it, in turn, to others. It won’t happen instantly. It will take time for us to realize how much we miss the little sparkles of joy she shared, the small touches she added in our lives. But I am confident that we will do it. We will be here with her sons, their wives, and her grandchildren, remembering the magical moments she gave us over her lifetime, and we will honor her by embracing her essence, by letting her live through our own inspired actions. In that way, she will never really die. She will always be a part of us, eternally residing in our hearts.