10/11/17

Palliative Care: To Live ‘The Best That You Can’

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Wendy Van de Bogart of Canton had a variety of palliative care when she was treated for cancer, but it wasn’t called that, and if it had been she would have been worried. Many people confuse palliative care with end-of-life hospice care.

By THERESA SULLIVAN BARGER

When Wendy Van de Bogart was diagnosed with stage 3, HER-2 positive breast cancer, she asked her oncologist whether her treatment plan was to get rid of the cancer or just make her comfortable.

“We’re not treating this palliatively,” she remembers him saying. “It’s just to kill the cancer. We’re giving you everything to fight it with everything we’ve got.”

But while she received chemotherapy, a mastectomy, radiation and preventative medications, she also received palliative care. She just didn’t realize it because nobody used the term.

“It’s probably a good thing, because I would have thought I was on my way out the door,” says the Canton mother of three.

Some of the palliative or supportive care was provided through her cancer treatment providers, the Center for Cancer Care at Charlotte Hungerford Hospital in Torrington and at Yale New Haven Health’s Smilow Cancer Hospital, and some she found on her own, with mixed results.

Following her surgery, her clinical team connected her with a physical therapist to help her get her range of motion back and help with some swelling (lymphodema). She sought out a dietician friend, herself a cancer survivor, for nutritional advice. She saw a therapist to help her deal with the stress, a naturopathic physician for vitamins and a hypnotist someone recommended.

Van de Bogart’s experience is fairly typical. The medical community, cancer patients and their families routinely equate palliative care with hospice care. They’re not synonymous. While both are designed to provide support and symptom management to people with a serious illness, hospice is intended for people whose physicians have determined they have six months or less to live and who are no longer actively fighting the disease.

“They view us as the death squad,” says Dr. Henry Schneiderman, palliative care physician with St. Francis Hospital and Medical Center in Hartford. “The conflation of hospice and palliative care is 103 percent of the general population and 100 percent with health care.”

Palliative Care Vs. Hospice

All of hospice is palliative care, but not all palliative care is hospice, says Colleen Mulkerin, director, palliative care, social work and spiritual care at Hartford Hospital. Palliative care, and the medical sub-specialty, palliative medicine, is specialized medical care for people living with any serious illness, including cancer, heart disease, stroke, Alzheimer’s, Parkinson’s, kidney disease and diabetes, according to the Center to Advance Palliative Care. It focuses on providing relief from the symptoms and stress of living with a serious illness with the goal of improving both the patient’s and family’s quality of life.

“The exciting thing about palliative care — you don’t have to accept anything or give anything up,” Mulkerin says.

Palliative care recognizes that there’s a person and a family invested in the treatment of the illness, she says. While the oncology team’s focus is on battling the cancer, the palliative care team is providing the support that the person and caregivers need from the time patients receive their diagnosis, through treatment and follow up care.

“We often get asked to assist patients and families with clarifying their goals. That can include advance care planning and symptom management,” says Dr. Laura Morrison, an attending physician at Smilow Cancer Hospital who is Yale New Haven Hospital’s director of palliative medicine education. “It’s really not at all about dying. It’s really about living the best that you can.”

While palliative care doctors may prescribe medications to help with pain, nausea and depression, the other forms of palliative care include therapeutic massage, cognitive behavioral therapy, acupuncture, reiki, pet, art or music therapy, help with finding financial support and guidance on writing advance directives, which spell out the patient’s wishes for end-of-life medical interventions. Some cancer centers offer massage and mental health support to the patients’ caregivers, since lessening their stress helps everyone.

Studies Reveal Benefits

Multiple studies show that patients who receive palliative care live longer with a better quality of life. A study reported in the New England Journal of Medicine in 2010 concluded that people with metastatic lung cancer who received early palliative care had less depression, improved quality of life and survived 2.7 months longer than those who did not receive palliative care.

According to an Institute of Medicine study published in 2014 in the Journal of Palliative Medicine, palliative care results in “a better patient experience with improved communication and less distress; better quality of care with less aggressive end-of-life care and more use of home and hospice care when appropriate; equal or even better survival; and significant cost savings,” of an average of $2,700 per person.

“When symptoms are better controlled, when patients are coping better emotionally and when people are able to make sure their treatment aligns with their goals, we know from the literature that people do better and so do their family members,” Morrison says.

Why The Misconception?

Palliative care remains misunderstood, advocates say, because it’s a fairly new specialty, and the holistic approach to patient care has been foreign to Western medicine’s more recent focus on medical specialties.

“So often, in Western medicine, we’re asked to give all control up to our medical team,” says Dr. Kathleen Mueller, medical director at the Center for Integrative Medicine at St. Francis Hospital and Medical Center in Hartford. “I think what we’ve lost is what we can do ourselves. What we can do is work on food, movement, relationships and stress reduction. If you can make yourself more whole going into chemo, you’re going to come out better on the other end.”

While cancer treatment facilities’ palliative care services differ somewhat in how they’re staffed and the support that’s offered, most patients are referred to palliative care by their doctors or nurses. Patients are told they can ask for support, but most don’t ask.

“I think it’s really hard to mobilize the resources if you’re not referred. You’d have to have a really skilled patient or family member,” Mueller says. “I do as many lectures as I possibly can to physicians and nurses to let them know this is available, and still I will have someone say, ‘Why didn’t I know you were here 10 years ago?'”

Even in the medical field, palliative and hospice care are linked, so many oncologists incorrectly view palliative care as end-of-life care, says Morrison. Some providers are moving toward calling it “supportive care,” she says.

MD Anderson Cancer Center in Texas conducted a study that found clinicians referred patients to palliative care sooner and were less distressed about it when it was called “supportive” rather than “palliative” care.

Most subspecialists who treat serious illnesses, Schneiderman says, operate in warrior-mode doing battle against disease; some see a referral to palliative care as a defeat.

As a result, “palliative care is brought in too late. Hospice is brought in too late,” he said. “It’s always too soon until it’s too late.”

UConn Health provides palliative care, but calls it “support care” on the “Patient Resource Center” pages of its website.

“I did some research and found cancer centers, [including MD Anderson,] were moving more towards ‘supportive care,'” says Sarah Loschiavo, a nurse practitioner who serves as the gatekeeper to supportive services offered to cancer patients. “We decided that [patients] would feel more comfortable with ‘supportive care.'”

Financial Burdens

Living with the uncertainty of breast cancer is challenging for patients and their loved ones, and the added financial burden of copayments and missed work magnifies the stress.

Van de Bogart was receiving chemotherapy in the winter, which is always a challenging time for her family financially because her husband’s business is slowest during the winter months.

One day, when she was receiving an infusion, the social worker stopped by and sat with each patient, asking if there were any issues she could help with. Although Van de Bogart had rated financial concerns as only 1 out of a possible 10 on a questionnaire about sources of stress, the social worker asked her about it. She admitted that the cancer added further strain to the family’s budget.

“She ended up getting some grants from some local cancer funds,” Van de Bogart says. The social worker filled out the application forms for her, and got the family some grocery store gift cards.

“That was really helpful,” she says. “I didn’t seek her out.”

Complete Article HERE!

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07/7/16

I am sorry I didn’t beat cancer

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By Uzma

001

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So why not this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, it felt like a failure as if I let down every one who thought I would “knock the shit out of cancer”. I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer”, the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometime I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone  diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me and if and how sorry they feel for me. I imagine something to the effect of … “Oh this poor young woman with young children who has this illness that has no cure”.

Me and my metastatic cancer.

I remembered when I was newly diagnosed, the word “metastasis” used to send chills up my spine. I used to dread my facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived on with bone metastasis for 11 years, she gave me hope but I still would at times try and block her out of my mind, for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep and all the medications and treatments, I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having had cancer meant. It meant accepting life that you have no control over…Life which transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancers, kick each day in the butt and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis )happens I will be ok” . I celebrated every clean scan and a good oncologist visit but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry “ call from my doctor and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was not longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate….and I will think of you the whole time.

Forgive me if this bugs you or hurts you? I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer”; I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life and showing others how to reconcile with stage 4 breast cancer.

Complete Article HERE!

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08/23/15

For Cancer-Detecting Canines, The Nose Knows

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A new clinical trial is set to begin in the United Kingdom using the powerful noses of dogs to detect prostate cancer in humans.

Dr. Claire Guest

Dr. Claire Guest, co-founder of Medical Detection Dogs, says one of her dogs sniffed out her own breast cancer.

While research has been done before, these are the first trials approved by Britain’s National Health Service.

The trials, at the Milton Keynes University Hospital in Buckinghamshire, will use animals from a nonprofit organization called Medical Detection Dogs, co-founded in 2008 by behavioral psychologist Claire Guest.

“What we’ve now discovered is that lots of diseases and conditions — and cancer included — that they actually have different volatile organic compounds, these smelly compounds, that are associated with them,” Guest tells NPR’s Rachel Martin. “And dogs can smell them.”

The dogs offer an inexpensive, noninvasive method to accompany the existing blood tests for prostate cancer, which detect prostate-specific antigen, or PSA, Guest says.

“It’s a low false-negative but a very high false-positive, meaning that 3 out of 4 men that have a raised PSA haven’t got cancer,” she explains. “So the physician has a very difficult decision to make: Which of the four men does he biopsy? What we want to do is provide an additional test — not a test that stands alone but an additional test that runs alongside the current testing, which a physician can use as part of that patient’s picture.”

The samples come to the dogs — the dogs never go to the patient. At the moment, our dogs would be screening about between a 0.5- to 1-ml drop of urine [or 1/5 to 1/10 teaspoon], so a very small amount. In the early days, of course, we know whether the samples have come from a patient with cancer or if the patient has another disease or condition, or is in fact healthy.

They come to the dogs at our training facility. They’re put into a carousel, and the dogs go around smelling samples. If they come across a sample that has a cancer smell, they’ll stop and stare at the sample and wait. They won’t move on.

On dogs’ sense of smell

Dogs, as we know, have got this fantastic sense of smell. They’ve got 300 million sense receptors in their nose — us humans have a sort of poor 5 million. So they are fantastic at smelling odors at very, very low levels.

On how a dog detected Guest’s own breast cancer

I had a dog who was — and still is — our most reliable prostate cancer detector dog. She was working on a project with me, but she started for a short time to be a little bit anxious around me, and one day kept jumping and staring at me and nudging into my chest. I found a lump which I hadn’t been aware of.

I sought medical advice. Actually, that particular lump was fine, but I had very, very deep-seated breast cancer. I had surgery and treatment, and I’m glad to say I’m fully recovered.

But it happened at a time when there was a huge amount of skepticism about whether dogs could in fact add anything the future of the diagnosis of cancer. It kept me focused on the fact that I knew that dogs could offer something, if we can diagnose for cancer by screening noninvasively, screening for volatiles. And of course, this could save thousands of lives in the future.

Complete Article HERE!

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03/17/14

Holly Returns With Good News

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“She stood and faced me, and her hands reached out until they came to rest on my scars. It was like her touch was both fire and ice, but I didn’t pull away. There was no turning back. I was finally doing what I should have done two years ago.”

Do you remember me introducing you to my friend, Holly? She is a 43 year old graphic artist who shares a home with her wife of ten years, Jean, and their teenage daughter Annie. She is also living through breast cancer. She had a double mastectomy three years ago and has been cancer-free since.

Holly has been dealing with some big-time body issues post surgery. The mastectomy scarred her psychologically as well as physically. This has had a tremendous impact on her intimate life with Jean.black:white

In the earlier column I mentioned above, I recounted an meeting she and I had where we tried to come up with a strategy to overcome these emotional and physical obstacles so that she could resume some semblance of intimacy with Jean.

During that meeting I asked Holly if she had ever taken the time to grieve the loss of your breasts. I suggested that she go to Jean and ask her to hold her while she mourned for what is no longer hers?

I recommend that the Holly and Jean begin to explore what is possible in their sex life together now. I suggested they avoid comparing what they are able to do now with how things were in the past. “Keep the exploration simple and open-ended. And I suggested that they avoid creating a goal to be achieved in their exploration. That’s where most people in their situation go wrong.

hollyI gave Holly two exercises: 1) spoon breathing — to rebuilding a sense of confidence about being physically together with Jean again. And 2) guided-hand touch — to help reestablish a threshold for what is possible between she and Jean as they move forward now.

I suggested that she and Jean keep these exercises playful and that she honor her limits. I asked her to get back to me in a few weeks and let me know how things are going.

Two weeks later an ebullient Holly returned to see me.

“I’ve had a great two weeks. No kidding. Jean and I are on cloud nine. It all started when I got home from our last session. No sooner did I get in the door than Jean was at me with her usual twenty questions. ‘How did it go? What did you talk about with Richard? Did you talk about me?’ And so on and so on. She was following me around the house like a puppy.

I was afraid that was gonna happen. On my way home from your office I was trying to work things out in my head — what should I tell Jean? I couldn’t just blurt it all out, all the stuff you and I talked about. Besides, I was afraid that Jean would pitch a fit about me airing our dirty laundry in public. I thought maybe if I told her I have a headache she’d leave me alone and I won’t have to mix it up with her right then and there.

As a matter of fact, I did have a headache, a big one, but it was mostly from all the anticipation. I had so much bottled up inside of me for so long, all that fear and shame, I didn’t know how it was gonna come out or even if it would come out at all. I was so afraid that I would say the wrong thing and make matters worse. I’ve done that more than once in our relationship.

When I got in the house, I headed straight for the bedroom but she cut me off at the kitchen. ‘What’s wrong, babe? Don’t you want to talk about it?’ I was shaking all over. My legs felt like rubber. I began to cry. I kind of fell in a swoon right into Jean’s arms, just like in the movies, except I’m lots bigger than she is so she couldn’t really catch me. I wound up slumped on the floor where my crying became a wail.

‘Jesus, Holly, what is it? Talk to me. Are you sick? Say something, damnit. You’re freakin’ me out.’blanco:negro

It was only then that I realized I hadn’t yet said a word to Jean since I got home. I tried to speak, but nothing came out. I was like a madwoman curled up on the floor rocking back and forth sobbing like a motherless child.

Jean was indeed getting pretty freaked out by this time. She had never seen me like this. She helped me to my feet and we stumbled to the bedroom where we both collapsed on the bed. Mind you, I was still carrying on this whole time.

I started to undress. This generally is a signal for Jean to leave the room, because I haven’t let her see me naked since the surgery. She was afraid to leave me alone in my hysterical condition, but she also didn’t want to embarrass me any further. She got up to go. I could feel her anguish. By now, tears were streaming down her face too. I reached for her hand and pulled her back down to the bed next to me. Still no words.

I began to undo the buttons of my top. My hands were shaking and I was moaning deep inside. I turned away from Jean and undid my bra and let it slip from my shoulders. I had gone this far, now all I had to do is turn and face her. But I couldn’t raise my head. I was frozen in place.

I was never so scared in all my life. Jean stroked my back with her fingers. Her caress was so gentle that it could hardly even be called a touch at all. But for some reason her touch calmed me. I took a couple of deep breaths and stood. Then I slowly turned toward Jean. I brought my hands to my face in shame and began to sob more intensity.

black_and_white_hands_holding_sjpg70She stood and faced me, and her hands reached out until they came to rest on my scars. It was like her hands were both fire and ice, but I didn’t pull away. There was no turning back. I was finally doing what I should have done two years ago.

When I was finally able to speak, the first words out of my mouth were, ‘they’re gone.’ I took Jean in my arms and pulled her close and we kissed like lovers do for the first time in three years.

I was stunned by Holly’s story. Tears welled in my eyes as she recalled her joyous reconnection with her lover. I thought to myself, what a courageous woman!

After my breakthrough with Jean, I noticed that I have a renewed interest in living. I don’t mean just going through the motions. I’ve done too much of that already. I want to live. I want to be present for whatever life holds for me and for as long as it is available to me. It also means being aware of my limits. When I’m tired or in pain I need to acknowledge that and rest. I’m not real good at taking care of myself in this way, but that’s going to improve, so help me.

What a role model Holly is for anyone facing a similar situation, indeed anyone of us. Too bad there isn’t a place out there where people, like Holly, could tell their intimate stories, successes as well as disappointments, and inspire others.

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