Saturday, February 23, 2019

Cancer and Increased Risk of Suicide


Maybe you’ve had that hypothetical conversation, the one that starts with, “If I ever got diagnosed with…. (fill in the blank) I’d kill myself.” And then someone else says, “No, I could stand that, but if I ever got (fill in blank) I would definitely check out.” 

And on it goes: what we think we could live with, what we think we could not live with: dementia, Lou Gehrig’s Disease, something terribly deforming, or one of 100 kinds of cancer.

Usually when we have those kinds of hypothetical conversations we are in our right minds so we kind of miss the real point: A serious medical diagnosis also has a psychological component or consequence.

In a recent report from the Penn State Cancer Institute, researcher Nicholas Zaorsky (a radiation oncologist) says that a cancer diagnosis can quadruple the risk of suicide among Americans.” 

She says, “there are multiple competing risks for death, and one of them is suicide. Distress and depression can arise from a cancer diagnosis, treatment, financial stress and other causes. Ultimately, distress and depression may lead to suicide. Our goal was to quantify the risk of suicide among cancer patients.” 

What this suggests is that patients, family, caregivers and medical professionals need to
insert care and questions about emotional health in the already crowded conversations and caregiving routines.

With good intentions many of us are tempted to brush past the sadness, distress and grief, “You’ll feel better when chemo/radiation/that side effect is over.” But maybe later is too late.

Nurses and oncologists need to turn around to face the patient and not the laptop, when asking, “How are you?” and maybe pause and ask again, “And how are you really?” And caregivers need to sit with their own anxiety long enough to hear the real distress in the patient’s life and perspective.

Mental and emotional health need attention too.

Thursday, February 14, 2019

Valentine's Day in CancerLand


So, you are in CancerLand on Valentine’s Day?

Yep, that sucks. It’s awful. I know; I’ve been there.

But you do not have to surrender to 5FU and all her crazy chemo cousins. 



You can have Valentine’s Day and romance and cancer. Here’s how:

Remember how Valentine’s Day worked before cancer.

Shed one tear remembering that and then laugh. Find something to laugh about. Call up your true love and reminisce together. Make a joke.

Make a Valentine. If you can get out, buy a pretty one. If you can’t get out (friggin’ 5FU) then make one: paper doilies, red Sharpie, tear a story form the newspaper, write on a playing card (yes you can ruin a deck of cards by taking out the King or Queen of hearts).

Drop your expectations. Like a hot potato—drop them. This is Valentine’s Day in a new country: CancerLand.

Think about love, and email love and text that love. There is so much love in CancerLand and with your partner, state it clearly. You have seen and felt love so grand and so different than people who have never visited CancerLand. Claim and celebrate that love. Explicitly.

People around you may be afraid to ask, “What are you guys doing for Valentine’s Day?” like they are asking other couples. Shame on them—announce what you are doing. Stare down their fear.

Things to keep: affection, conversation, chocolate, cards, flowers, bad poetry, good poetry, and romantic comedies (TV listing are crammed with romantic movies tonight.)

Things to lose: expectations and projections

Things to negotiate: a good meal, gifts and sex. (be creative and open-minded with that last one.)

Refuse to surrender: your relationship, your coupledom, your happiness.

Monday, January 28, 2019

Best Books About Caregiving--Fiction and Memoir


There are lots of books to tell you how to be a caregiver—books for spouses, siblings and adult children.

There are specialized books for caring for someone with Alzheimer’s or cancer or Parkinson's Disease etc. But sometimes you want or need more than a how-to book, and more than the facts—you want to know about the feelings, and to know how someone else felt when they were where you are. And for that we have to go to literature.

I teach a class on the Literature of Caregiving, and I have found that these are those are the kinds of books that caregivers crave and relate to. These are the books that often answer the questions that no one knew that they needed to ask.

So, here are some of my favorite books about caregiving. You’ll have some surprises I’m sure, but caregiving is nothing new to humankind, and great works of literature touch all situations and all of the feelings that make us human.
 
Caregiving Memoirs:
Autobiography of a Face, Lucy Grealy
Cancer Vixen, Marisa Acocella Marchetto (It’s a graphic novel)
Midstream, Le Anne Schreiber
Landscape Without Gravity, Barbara Lazear Ascher
Truth and Beauty, Anne Patchett
The Story of My Father, Sue Miller
Low Down: Jazz, Junk and Fairy Tales. AJ Albany
The Broken Chord, Michael Dorris
Operating Instructions, Anne Lamott
Three Dog Life, Abigail Thomas
The Best Day/The Worst Day: Life with Jane Kenyon, Donald Hall
The Two Kinds of Decay, Sarah Manguso
 
Caregiving Fiction:
We are All Welcome Here, Elizabeth Berg
A Patchwork Planet, Anne Tyler
Celestial Navigation, Anne Tyler
Anna Karenina, Leo Tolstoy
King Lear, William Shakespeare

Add a few of these to your Winter reading. On the couch, in bed, and in your caregiving tote for doctor's offices and waiting rooms. You’ll be in good hands, and good company.





Sunday, January 20, 2019

Sex and Cancer Cancer Today Magazine

Many of you know that I started this blog--and advocating for more education around sex and cancer--because of my experience being shut out and shut down by medical folks when John was diagnosed with Colon Cancer at the beginning of our relationship.

Because it's my gift --and my bent in life--I went to my computer and started writing. I also shared the story of our romance --the good and the bad--and wrote a lot about relationships in general.

But it was that shame around sex and cancer that got me started and it keeps me keeps me going.

I am delighted and honored that Cancer Today Magazine found the blog, and interviewed me for their recent article on Sex and Cancer.

I'll put the link right here:

https://www.cancertodaymag.org/Pages/Winter2018-2019/Staying-Close-Through-Cancer-Sexual-Intimacy.aspx

Please consider sharing this.

There are still too many couples impacted by the silence and the lack of helpful information, and still way too many medical professionals who don't ask and who have nothing to say when asked.

I thank all of you for following this blog, and sharing my updates, and for continuing to make it safe for Love in the Time of Cancer.

Monday, December 17, 2018

Fear of Cancer Recurrence


So, you’ve been through surgery, radiation, chemo. Almost to five years. Maybe even ten years. Your friends have stopped asking “How are you?” in that slow, drawn out way. Now it’s assumed that your worries are about your kid or you job or your weight. 

And it’s true you have new thoughts now and plans for the future. But still. But still.

You feel an ache, there is a bruise, a bit of swelling, a funny feeling. Your first thought is not, like most people, “Aging sucks.” Rather, your first thought is, “Is it back?”

The reality is that cancer can recur—in the same place or sometimes metastasize to a new place. So, we residents of CancerLand have this thing called FCR—Fear of Cancer Recurrence.

And it’s not just you: According to Susan Krigel, Ph.D. a clinical psychologist at the Midwest Cancer Alliance, 97% of cancer patients have FCR that lasts for years.

The good news: you’re not alone.
The bad news: you can feel scared a lot or crazy a lot.
And the probably news is that you’ll experience some anxiety.

Triggers will be different for each person. You’ll want to talk to folks in a support group. You may also want the help of a therapist who knows cancer. That’s a key question to ask: Does this therapist know the psychology of cancer and the dynamics of life as a cancer survivor. Note: Having had cancer does not necessarily make one expert. Having treated many people with cancer and understanding the dynamic may be a better qualification than having had cancer.

Humor helps too. You’ll need to test that first with family—they have their own fears about your cancer. But find a couple of people –friends or survivors—and invite them to be your FCR warriors. 

Monday, December 3, 2018

Helping Yourself vs Asking for Help


[Friends--here is a wise and practical guest post from writer, Lori Ann King--writing about the delicate balance between  helping yourself and asking for help:

“There’s a mass near your cervix,” the doctor said.

That’s where my story began. 

After a routine colonoscopy, my gastroenterologist had ordered an ultrasound and a CT scan to see if anything was pushing on my intestines that might explain some of the pain I’d been experiencing. This led to the discovery of a small mass near my cervix and an ovarian cyst. I was referred to my regular gynecologist.

Now, when my routine test results came back, and they included the word mass, my blood pressure went up a notch. Cysts I knew were common and relatively harmless.

The idea of a mass, on the other hand, had a whole different connotation and stress factor. The possibility of cancer crossed my mind. I wish I had asked more questions. I might have heard that while it could be cancer, it could also have been a fibroid. We would not know until it was removed and tested. A fibroid sounded much more manageable than cancer in my mind. 

In my rush to move forward quickly and get back to some form of normalcy, I opted to see an unfamiliar doctor when my regular gynecologist was not immediately available. My husband, Jim, came with me to this consultation and together with my new doctor, we decided to remove the mass and monitor the cyst. Just days after my colonoscopy, another surgery. More anesthesia. More recovery.

Thankfully, the mass was not cancer. It was a fibroid. Benign. I breathed a sigh of relief, took a few days’ rest and looked forward to getting back to living my healthy life.

Unfortunately, that’s not where my story ends. As the ovarian cyst continued to grow along with my pain and discomfort, we decided to remove the ovary and cyst. Another surgery. More anesthesia. More recovery. Much more.

Back into surgery I went, hoping and trusting for the best-case scenario: the simple removal of one ovary and its fallopian tube. I was excited to erase the pain that was burdening me. I didn’t expect anything else to happen. 

I awoke to learn that the worst-case scenario had happened: I had received a full hysterectomy as well as a double oophorectomy. Uterus, cervix, ovaries, fallopian tubes—everything had been removed due to the severity of endometriosis that had been found.

I expected to be pain-free when I woke. It didn’t work that way. I was in severe pain. I was tired. I was afraid. I couldn’t pee or poop. My body felt and looked swollen and bloated. This was uncharted territory and I had no idea how to fix it.

Thus began my ongoing journey toward balanced wellness and optimizing my health. It involved complementary medicine, bio-identical hormones, lifestyle changes, and managing my thoughts and words so I could better control my emotions. It involved educating myself, empowering myself, and fighting for respect from doctors, demanding to be heard and seen while firing those that didn’t treat me as a full partner on my wellness team.

Medical issues are scary, whether we are the patient, or the loved one on the sidelines. I’m grateful my story did not involve cancer. My parents are both cancer survivors. It’s a legacy I don’t wish to continue.

My experience with surgery and surgical menopause taught me many things. Perhaps the most profound is the delicate balance between helping myself and asking for help.

Help yourself and ask for help
We can fuel our bodies with optimum nutrition and move our body. We can build a healthy mind. We can smile, laugh, share joy, play, rest and be still. We can practice yoga. We can meditate. We can do everything in our power to reduce stress as if our life depended on it. Sometimes, it does.

We don’t have to go through this alone. We may or may not have close family and friends. We may or may not be married or have a partner. We can ask our doctors, employers, and health insurance company what resources are available. We can join an online or local support group. 

Reaching out to people is not always easy. In the past, I was a private person, to the point where I didn’t share much about my health challenges with my parents or sister before surgery. In hindsight, I might have done this differently. 

My sister would certainly have wanted to pray for me. My mom would have just wanted to be there, offering support and encouragement while preparing meals, doing laundry, and cleaning my toilets. Some days, that’s just what a girl needs from her mum—particularly right after surgery when your body is using all your energy for healing its tissues.

Not everyone will know how to help us. This is where we need to communicate clearly by inviting friends, family, coworkers, and even neighbors into our lives. Let them bring a meal, do the dishes or a load of laundry, vacuum the floors, clean the kitchen, or pick up a few groceries. They can loan us movies or books, or drive us to the doctor or pharmacy. If we have children, they may help with childcare or transportation to after-school events and play dates.

Or, they can come for a visit. Some days you’ll want to talk, some days you’ll want just to sit. Ask for what you need and accept what they can give. Release them if they can’t. They will be there for you another time. 

Know that your friends are not therapists or counselors and sometimes we require more of a listening ear than they can give. I found talking to a counselor played a large role in reducing my stress levels after surgery. I wish I had done it in the weeks prior to surgery as well.

Keep in mind that when we are dealing with surgery or illness, our loved ones get stressed too. They cannot read our minds. Do your best to use our words to communicate your needs, desires, and fears. It may be as simple as asking for a hug or reassurance that they are with us through sickness and in health, in good times and in bad, happiness as well as in sadness. 

Above all, know that family and friends covet our time. Give them what you can, guard your energy, help yourself, and know when to ask for help.


About Lori
Lori Ann King is a wife, an athlete, a freelance writer, blogger, and nutritional consultant helping people with weight loss, energy and performance, and graceful aging. She is the author of Come Back Strong, Balanced Wellness after Surgical Menopause and Lean In or Lighten Up, Rebuilding Your Mind Toward More Positive Emotions. She and her husband, Jim reside in the Hudson Valley of NY and are currently working together on a book about the requirements for creating a healthy lifestyle.