Two Patients in the Waiting Room

When a woman is diagnosed with breast cancer, doctors immediately investigate whether the cancer is hormone-sensitive. They hope so, because hormone-dependent cancer can be fought by quickly shutting off the hormones. This won’t directly treat the cancer; it only lowers hormone levels, which can slow tumor growth.

Doctors recommend (and in my case, beg and insult) female patients to remove their ovaries, to stop the hormones.

The second-best remedy is shutting down the ovaries with drugs. Never mind that the body produces estrogen in other places besides the ovary. Never mind that many women who have their ovaries removed still die from cancer. Never mind that estrogen-deprivation creates new problems. Never mind that when cancer patients reach menopause naturally, their cancer stubbornly continues to grow. LET’S SHUT THOSE OVARIES DOWN.

I’m being sarcastic. I am traumatically stressed about how my ovaries were viewed as evil, when my cancer was diagnosed. I did, briefly, allow my ovaries to be chemically shut down with Lupron, before I had even chosen a doctor.
In my experience, doctors gloss over exactly what happens when Lupron is injected in one’s butt cheek. I imagined an OFF switch on my ovaries. I found out later how Lupron behaves. It heads straight for the brain.
“Lupron … is classified as a leutinizing hormone releasing hormone (LHRH) agonist. HRH agonists work by telling the pituitary gland located in the brain to stop producing leutinizing hormone, which (in men) stimulates the testicles to release testosterone and (in women) stimulates the ovaries to release estrogen.  Lupron … does not have a direct effect on the cancer, only on the testicles or ovaries. The resulting lack of testosterone (in men) and estrogen (in women) interferes with stimulating cell growth in testosterone or estrogen dependent cancer cells.” (http://chemocare.com/chemotherapy/drug-info/Lupron-Depot.aspx)
“Telling the pituitary gland” is still a bit of a sugar coat. The drug scrambles the signals the pituitary gland sends to sex organs. The gland controls many bodily functions. That’s why patients on Lupron experience hot flashes. Ineffective body temperature control is collateral damage. And when Lupron treatment is withdrawn, the ovaries try to self-correct, releasing lots more eggs than usual, of importance to aspiring conceivers. Hence, Lupron is also used as a fertility drug.
I don’t hate Lupron and I understand its necessity in cancer treatment. But I regret the suffering it causes and I yearn for the day when treating cancer will not require such heavy hands on a patient.
This morning at a doctor’s office, I heard a receptionist tell a patient that his Medicare wouldn’t cover his Lupron injection. She explained that he had to pay 20% of the bill, and his share was more than $100. I could tell he didn’t have a hundred dollars, because there was silence after the receptionist said that pre-payment was required. She clicked her tongue to counter the dreadful silence that filled the room. She reminded him that he had paid before the previous visit. He then produced another insurance card, but it was for prescriptions, not doctor visits. I can understand the logic.

I didn’t have money to help the man pay his bill, which most certainly was for treatment for prostate cancer. I doubt he would have been comforted by any of my words, especially if I told him that I think prostate cancer is more overtreated than breast cancer.
I left silently, helplessly, before the matter was resolved. I couldn’t stop thinking about the man. I knew nothing about him, not even his face, because his back was to me.
And yet, I KNEW him, in a way that only people undergoing cancer treatment know each other.

The gratitude we feel to be alive can fade to black when dollars we don’t have are standing between us and the horrible drugs that we pray will keep us alive.
I don’t have a grand ending to this story. But it’s not a sad ending, either. I was reminded that there are people who need help, even when I’m doing OK. Even though I couldn’t help the man who crossed my path today, in doing so, he helped me.

Andrea Templon’s Toasty-Warm Album Melts Away Winter Blues

Like hot chocolate without the calories, sunshine without the skin damage, Andrea Templon’s singing is comforting warmth.

Donating to Help Breast Cancer Patients

The Pink Girls at Bull's fundraiser on Oct. 2 at Bull's Tavern will be donated 100% to breast cancer research. Funds will be donated to the research department of Memorial Sloan Kettering Hospital, one of the top research facilities in the United States. Click on the button below to make a donation. Deductions are tax-deductible.

A Quick PayPal Click Helps Breast Cancer Patients in N.C.

A Closer Look of the Triad helps breast cancer patients in the Winston-Salem/Greensboro/High Point (N.C.) area. We are patients helping patients. We deliver “swag bags” to patients at their homes or at local hospitals. These bags cost nothing to the recipient. They are filled with comfort and beauty items such as gentle moisturizers, lip balm, comfy socks, and lipstick. We also mentor women who are coping with a new diagnosis.  Choosing an oncologist, researching treatment, filing disability claims — these tasks can be overwhelming. We do our best to make women feel strong and confident about themselves and their decisions. You can see the women we help on our Facebook page. We are a designated 501(c)3 nonprofit charity, so contributions can used as tax deductions on your yearly tax returns, and isn’t that a nice pat on the back.  You do not need to have a PayPal account to make a donation through PayPal. Thank you for your generosity.

 

 

 

I Know It’s Not A Contest, But …

If there was a “Best Sister” contest, my sister Teresa would win.

Here’s how I know.

• She’s been a nurse her entire life. Besides teaching, few careers come close in required commitment. The best teachers love their students, but nurses love sick and dying patients.
• She loves everything. Not just sick and dying humans, but animals and plants. Her pets are all rescues, and without her and her husband to love those kooks, I doubt they would be alive.
• She has taken care of me during some of the lowest/sickest  periods of my life. Paying my doctor bill when I had bronchitis but not health insurance? Check. Driving my car with me in it when I moved halfway across the country? Yep. Sending at least three birthday cards and a generous check to my son every year? Always. And to hear her tell it, I’m the amazing sister.

Teresa is my older sister. (I have a fantastic younger sister, too.) Teresa doesn’t have a reality-TV show or a YouTube channel. Her greatness can be measured not only by the number of patients she has nursed, or clinical evaluations she has written, but also by the hands she has held and smiles she has coaxed, actions that are rarely counted as important in today’s world. As my way of introducing her to readers, on her birthday, I am sharing a short speech she wrote, more than 10 years ago. I re-read it from time to time, to remind myself of how blessed I am to have her as my sister.

How best to introduce you to my sister Teresa? The photo from go-kart racing?

Or with one of her beloved pets?

Or with me at a 5k race, which she ran with me out of sheer pity?

Or wearing a fascinator at WalMart?

My name is Teresa … and I am proud to be a nurse.
I always knew I would be a nurse.
From the time I was 4 years old. When I was asked what I wanted to be … the answer
was ALWAYS the same …
“I am going to be a nurse.”
When family members would try and compel me to consider another career …
one with more prestige … more money … maybe a doctor?
I always said …
I am going to be a nurse.
And …
I did …
Become a nurse.
Nursing had afforded me experiences that have shaped who I have become.
I have learned that I am not the only person in the world.
I have learned that no matter what is going on in my life … someone else has bigger issues
than I do.
I have learned to use all of my senses.
I have learned to trust my gut, my heart and my intuition.
I have learned the power of not only hearing, but also of listening to what is being said …
both verbally and nonverbally.
I have learned that sometimes saying nothing is the best thing to do.
I have learned that I do not have all the answers.
I have learned that illnesses bring out the best and worst of my patients.
I have learned that illnesses bring out the best and worst of my patients’ families and
friends.
I have learned that crying is an acceptable way of caring for my patients.
Experiences I have had over the past 22 years:
I have held a woman up while she strains to push her child into the world.
I have held up her newborn baby so she can see that he is perfect.
I have given a newborn his first bath.
I have cared for a toddler who does not understand why people are sticking needles into
him.
I have comforted the parents of the toddler who do not understand why people are
sticking needles into their toddler.
I have cared for a child who will not go home and have seen the pain in the parents’ eyes
when they realize the same.
I have cared for a teenager who was undergoing chemotherapy while missing her senior
prom.
I have seen the fear in the eyes of a young husband as he tells his wife she will be OK as
she is wheeled to the OR. … And then seen the joy in those same eyes as she is returned to
her room. … and to him … OK.
I have helped a man make the decision to stop fighting a terminal illness and go on
Hospice … and held that same man’s hand as he took his last breath on his journey from
this world to the next.
I have seen families struggle to deal with the loss of a loved one … and bravely make the
decision to donate organs so something good will come of their loss.
I have seen a flaccid, diseased heart taken from the chest of a man who would die without
a transplant.
I have seen a healthy heart sewn in that same chest … and the patient going
home … healthy … and very thankful for a second chance.
I have coordinated the evaluation of a patient facing dialysis if he did not get a kidney
transplant … and then the evaluation of his living kidney donor … his wife … and the
miracle of the donation and transplant happening on Valentine’s Day.
There is not another profession in this world that affords one the diversity of experiences
that nursing does.
Nursing is not for wimps.
Nursing is not for the faint of heart.
Nursing is not for glory seekers.
If you have drive, self-confidence and a caring heart … you may have what it takes.
I can say with great certainty that in my career:
I have been tired, but never bored.
I have been frustrated, but never beat.
I have been challenged, but never scared.
And … I have never regretted saying …
I am going to be a nurse.

Vegetarian Virgin Cuts Up (Carrots and Cabbage)

My first week with the Purple Carrot, the vegan food-delivery system that supplies 3 meals a week for 2 people, has been ok. My husband traveled over the weekend and I prepared one meal by myself. It’s definitely more fun to be in the kitchen together.

One meal was Spanish-derived, another was Middle Eastern, and another Asian. I tired of mincing garlic and chopping onions. The recipe instructions didn’t seem paced right. For instance, while cooking a skillet full of chopped vegetables on medium high, the instructions were to make the hot mustard sauce, which would have been simpler to make before cooking began. And despite being a virgin vegetarian, I’ve had plenty of tofu and seitan. I just don’t like the taste. Silken tofu is pretty tasteless, and yet the recipe didn’t call for it to be marinated in the cheerful stew, just plopped on top and browned, and even under a broiler for 10 minutes, not much browning happened

On the positive side, the price was more than fair, we live in a city with mostly horrible chain restaurants, so this food was like manna. I can’t say I loved all the recipes, but I liked them, and they pleasantly filled my belly, and we probably could have invited a third person to eat with us, there was so much.

I’ll keep trying. I vowed to stay vegetarian only until I wanted to eat meat. So far, I haven’t had any desire. Purple Carrot gets an A for effort, in keeping me happily vegetarian

 

Peaks & Valleys

  I have two friends with breast cancer who received terrible news last week. These beautiful ladies have endured surgeries, medication with sickening side effects, radiation, chemotherapy, hours-long wait for medical appointments, rude nurses, and complacent doctors. Last week, my friends received news that there’s more of that to come. The cancer has gotten worse. Yesterday, another friend received the fantastic news that her cancer is responding well to treatment. 

This is what breast cancer is, peaks and valleys, highs and lows. It’s not just ringing the bell when you’ve finished chemo, or looking great with your new hairdo, although I have cherished those moments as I witness them. 

The peaks and valleys are part of my own life, too. 

Every 3 months, most Stage IV breast cancer patients in active treatment get body scans to see if the treatment is working. Sometimes it is and sometimes it isn’t. My next scan is Nov. 2. 

I hurt to think of my friends who are not responding well to treatment. I know they have done everything possible to beat cancer. And it wasn’t enough. This doesn’t mean the end, it just means, they must try something new.

That’s why I started A Closer Look, my charity that delivers gift bags to breast cancer patients. 

I can’t cure cancer, but I can make the life of a patient a little more cheerful. 

Yesterday, I delivered a swag bag to a woman who was a very happy recipient. It brought us both joy. I am loving these joyful moments; I feel useful. I will need to be useful during the valleys. As my ministry progresses, I will visit women who are close to death. I may need to help families prepare. 

It won’t be easy but I know, we all know, that one day, for all of us, it will be the end, that there are no more treatments that can help. 

We do what we can do.  

Pain: Cancer Will Kill Me, But Battling Pain Made Me Stronger

I have hinted in previous posts that controlling my pain is a big problem. Let me state it clearly here: The scariest, most gigantic problem I face is controlling my cancer pain.
September is Pain Awareness Month. It’s fitting that I am finishing my post on the next-to-last-day of the month. I’ve been working on it all month. That’s one way pain has affected me, by slowing me down. I want to describe my pain, for those who may be curious, and tell you about an organization that advocates for people in pain and their caregivers.

I have learned that even the best oncologists know little about pain control for patients with chronic pain. I believe patients often hope the pain will go away, just as they hope the cancer will go away, and sometimes suffer in silence. One reason I’m writing about pain is the hope that I may encourage other cancer patients to speak up about their pain.

There’s rarely a day when I can hop out of bed and run an errand first thing in the morning. I awake to pain, because my pain medicine only covers 8 hours. I take my morning dose, then stay under the covers, until sitting up or moving my legs doesn’t cause aches. If I’m having a day of high pain, just shifting in bed from my left side to my right side produces a sharp pain, as if someone has kicked me hard in the ribs.

My bone pain hurts the worst. Cancer is in my spine, ribs, pelvis and other bones. The cancer eats away at the bone. I haven’t asked if the cancer creates microscopic cracks, or holes. I don’t really want to envision my cancer that clearly.

Some cancer patients have few painful tumors, or none that are painful. Not me. Pain was my first signal that I had cancer, both in 2008 when I had a tiny lump in my left breast (Stage I) and in 2011 when the cancer had metastasized (that’s Stage IV, the worst).

The cancer in my ribs is very painful, whether I am standing up, which requires my bones to bear weight, or lying down, which puts pressure on the bones. I have cancer elsewhere. The tumors in my lungs aren’t painful, but they cause me to have difficulty breathing, which is painful.

I had radiation on two areas of my spine in December 2014 to reduce the pain. I still have residual, unpleasant side effects from the radiation. My legs tingle painfully from hips to toes if I spend too long on my feet. The sensation is similar to your leg “falling asleep” but it’s a sharp pain, and moving about doesn’t alleviate the pain. The radiation did help the spine pain and I’m grateful. I’m not sure if I would do it again, if I had the chance. I won’t have the chance — bones can’t stand up to radiation more than once.

One of the worst bumps in the road of pain control was learning that my body builds up a tolerance to pain medication, just as it does with antihistamines and other drugs. I can’t predict when this will happen. There is little warning. One day the breakthrough pain becomes worse, and my breakthrough pain dose doesn’t stop the pain. I become disoriented, flushed and above all, I just want the pain to stop. I have learned that this is a sign my body has built up a tolerance to the drug. It’s like withdrawal. I haven’t stopped taking the drug, but my body experiences withdrawal as it craves more and more of the drug. So I suddenly have to battle the cancer pain, and the pain brought on by a growing tolerance to a particular medicine. Both my cancer pain and medication side effects can appear quickly and full-force, without any small aches or manageable side effects as warning. One moment, I’m enjoying a restaurant meal with friends, then suddenly, I break out in a cold sweat, voices become muffled, lights seem to swirl. It’s hard to answer when people ask if I’m ok. I want to say, “I WAS doing just fine.” That’s the peculiar nature of pain relief.

I once made the mistake of stopping a pain medicine abruptly, because my growing tolerance had forced my body into constant aches, chattering teeth, and other side effects I could not endure. I felt like I had the flu for the next 48 hours. I know now that medicine is available to help ease the side effects when my tolerance grows. In addition, stopping a pain medicine suddenly can be dangerous. I made a rash decision, which is common in people on pain medicine who are in distress. Please let my experience teach you, so you do not have to go through what I did. Don’t stop taking your pain medicine without a doctor’s supervision. And don’t make any serious decisions without discussing them with a person you trust.

I’m grateful that strong narcotics are available for my pain, but it’s not an easy ride. I have developed empathy for drug addicts. There is no “high” when the drug works for me. I suspect most drug abusers do not feel high, either. The drug eases their sensation of pain, just as it does for me.

That’s another thing I have learned about pain medicine. I once believed that opiates actually relieved the pain. Not really. Pain is a sensation. The medicine keeps me from awareness of it. It’s kind of like putting your hand in a bowl of ice water. If something disrupts the message from your hand to your brain, you won’t feel the cold, or you won’t feel it as sharply. However, your hand is still in ice water. And your skin may suffer from the effects. Sometimes I wonder if my body suffers from the effects of the cancer that I can’t feel. Like my knowledge of my bone cancer, I prefer to keep my knowledge of pain at a simple level, to discourage needless fretting.

After years of searching, I now have a pain doctor who helps me tremendously, at my city’s Hospice and Palliative Care center. The center isn’t just for people in their last days. The Palliative Care division treats patients with chronic, terminal diseases. I meet with my pain doctor every month or two, and information about my care flows between all of my doctors.

A few months ago, I was interviewed for a story in Pain Pathways magazine, and through that I found out about the U.S. Pain Foundation. The group serves as an advocate not just for patients but for caregivers, too.
There are many ways to treat pain, and the foundation is a useful resource for people who may be frustrated by uncontrollable pain. The worst pain is often best treated with several methods, not just one. The foundation’s website is a great place to get started. http://www.uspainfoundation.org
It was a relief for me to discover that there was a group that actually cared about my pain.

It’s important for cancer patients and others in pain to have national-level advocates. There are many issues that need attention. For example, our country has a serious problem with prescription drug abuse. Sometimes, laws designed to curb addiction actually make life harder for patients with chronic pain. For example, no one is allowed to pick up my narcotic prescription but me. That’s a good law, but what if I’m too sick to leave the house?

The U.S. Pain Foundation educates lawmakers and other interested groups about patients in pain.
In addition to the website, the organization’s outreach includes support groups, and Twitter chats with pain professionals.
I was so happy to learn about the pain foundation that I have become an ambassador for the foundation. I especially want to help cancer patients learn about pain control, BEFORE they need it. If you know someone undergoing treatment for cancer, would you let them know about the U.S. Pain Foundation? It’s something he or she may not need now, but it’s good for everyone to know help is available when it’s needed.

When Good News Requires a Translator

I’m writing my latest Caring Bridge update on my personal website, ControlFreakPublicRelations, because Caring Bridge doesn’t handle full-size photos and YOU HAVE GOT TO SEE THIS. So if you clicked on a link to get here, thanks. I am trying to show you my written PET scan report, not steal your credit card numbers or hack into your Ashley Madison account.
Isn’t technology great? I can sit in bed and use a hand-held computer and share the results of my Sloan Kettering medical test with people who live anywhere in the world.
So, take a glance. Seriously, don’t try and read it. This is just the last page, anyway.

Huh? Thoracic inlet? Adnexal cyst?
Here’s all you need to know, and here’s why I didn’t include the entire report, which would just make you squint and make a lemon-face, with all that jargon.
Stable. Stable. Stable. Stable.
Yes!!! Praise God.
“Stable” means my cancer isn’t growing. In some places in my bones, the lesions are actually smaller.
The reason this news is especially awesome is because it was so unexpected.
I started a new cancer treatment several months ago, called Afinitor. It doesn’t help every patient. My doctor believed it could help me. I was unable to tolerate the usual 20 mg dose, or a half-dose, or even 7.5 mg. At the time of the scan, I was taking 2.5 mg every other day, the only level I could take without constant stomach pains, skin rash or depression. And the results are great!
I’m feeling so relieved and joyful right now.
My next hurdle is getting my pain under control. I’m experiencing some withdrawal symptoms, and pain during activities. But none of this lessens the joy I feel, particularly in sharing this news with you. Thank you for caring about me.

A Marathon Tale: An Unlikely Duo

Desert Grit

Heading home to Buffalo, NY for the marathon over Memorial Day is an annual delight. The weather is always perfect, the trees are green, and the city has a winter-is-finally-over-buzz that instantly doses me a contact high. It also arrives at an opportune time for relief when the heat is ramping up in Tucson to the triple digits. “It’s not bad, it’s a dry heat,” they tell me. Yeah, well so is an oven.

It’s a quick trip. I arrive at my folk’s house at midnight on Saturday. I’m up at 5:30am the following morning sipping coffee and going over my strategy for the marathon that begins at 7. The last marathon I ran was Boston a couple years ago. I ran a PR (personal record) in 2:47. An hour or so after I finished, the thrill of my fastest marathon to date became trivial and insignificant as the horrific…

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