Hope and Courage

Living With Stage 4 Breast Cancer



Finding Beauty While In Brokenness

Finding Beauty While In Brokenness

1-OrchidShow

Sorry I haven’t posted in a while — there’s been a lot going on and a lot of adjustments to make. Here’s some of what’s happened: Most recent PET scan results showed a great deal of increase in amount & size of cancer throughout bones and liver. I felt bad for my doctor to have to deliver the news. We usually have some laughs together and this visit was different. Since I was expecting unwelcome news my friend Lora went with me, it was good to have her there. It was difficult news for my family as well. (I often wonder if it’s not easier to be the patient than the loved ones who feel so helpless.)

My oncologist suggested a more aggressive chemo that might alleviate some current symptoms but would add other symptoms of its own, and no more real time. There is no cure, just possible experimentation with more and more chemo agents, which would only be kicking the can down the road (but not for long) in terms of the end game while making my life dismal. (I love it when doctors say, “This drug is well tolerated,” and my question from experience now is, “compared to what, having your fingernails pulled out?!)

I’ve decided not to pursue any more treatments since the disease is so advanced and no matter what I do the prognosis is poor. I’ve decided I do not want to live at the hospital, clinic, or doctor’s office, with more tests, needles, injections, or to spend every Friday for hours getting an IV infusion. I want to enjoy the best quality of life I can for the time I’ve got left. Hopefully by now everyone has seen the Frontline Documentary ‘Being Mortal’ which is very helpful in understanding where I’m at in my cancer journey. This will take you to a link to the Frontline piece: Being Mortal

So instead of starting a more aggressive chemo I decided to go to The Orchid Show. It was a stellar choice, filled with joy, beauty, laughter, life, and friends. That week was also my birthday so some very special angels, in the form of humans in my life, took me to The Bronx Botanical Gardens and wheeled me around for a breathtakingly, spectacular, multi-sensory experience of color explosions, exotic diversity, scents, sights, and tastes! I was speechless many times (and if you know me that is something).

2-OrchidShow

I literally cried from being overwhelmed by the beauty, that continues on for what seems like miles of tropical jungle with elaborate backdrops of thousands of exotic orchids, fountains, waterfalls, and overhead passes created out of flowers you never knew existed. It was a little taste of what Heaven will be like.  The Orchid Show closes after this coming Sunday, so drop everything and get there tomorrow, or Sunday.

BeautifulFlowers

Another blessing was a good friend I’ve known since we were 16 came to visit for 4 days. Also, my niece Jenn & her husband Fran from CT stopped by for a long hug and to drop off an amazing pillow that has changed my life (more on that later).

The following week (last week) my sister Debby & her husband Don were in town for his follow-up at Memorial Sloan Kettering (MSK) after being diagnosed with aggressive stage 4 kidney cancer last year when he had multiple surgeries and procedures. Unfortunately, his current scans showed progression of cancer in his bones. It’s agony waiting for test results and then so much worse when you get news the disease is progressing, even when you know that is what is going to happen. With stage 4 cancer it’s an emotional roller-coaster ride that never ends. Please keep them in prayer.

I had hoped to travel back to Florida with Debby & Don so I could see my 92-year-old Mother, however, I was not well enough to make the trip. Hopefully, someday soon.

I am now being followed by a Palliative Care doctor who confirmed I probably have about 3-9 months left, with a year being an optimistic goal. (I’m an optimist.)

There is much more to say and I’ll update more soon.
Please understand I cannot answer all email & phone calls, but I do read everything.

oxo n

TOS-hero3

 


Hope and Courage.com

posted 15 April 2016: http://hopeandcourage.com

 

Yesterday, Today, Tomorrow

Yesterday, Today, Tomorrow

I wanted to get an update out on how things went yesterday. The results of the PET scan were not good — there is a lot of increased cancer growth in size and spread throughout my bones and liver.

This was not a surprise and pretty much what I was expecting based on all the symptoms over past months. The prognosis is not good. It was suggested I could start on more aggressive chemo next Friday that may give some temporary relief, but no cure. I told my oncologist (who over the years has passed the patient-physician barrier to become a friend) I would think about it, weigh the pros & cons, along with my personal goals for how I‘d like to spend the end of my life, and would let her know after the weekend. I’ll also meet with the Palliative Team this coming week. If I decide to not pursue additional chemo I’ll be meeting with Hospice.

It’s a comfort to me that it is Easter weekend. Those that know me well know the reason I do not fear death is because of what happened at Easter. Today is Saturday, in-between Good Friday and Easter — yesterday was a solemn reflection on the cross, tomorrow is a joyous celebration of the empty tomb with all that it means and represents. It is because of what Jesus did at Easter that the news I got yesterday is no longer fearful.

An Easter Message by Tim Keller. The Easter story tells us of a new beginning after disaster – that after death there is life.

DeathHasBeenConquered


Hope and Courage.com

posted 26 March 2016: http://hopeandcourage.com

On Being Mortal

Being Mortal video

I hope this link works to get you to the wonderful PBS Frontline report based on the book Being Mortal —by Dr Atul Gawande.  http://www.pbs.org/video/2365422384/

“FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. In conjunction with Gawande’s…book, Being Mortal, the film investigates the practice of caring for the dying, and shows how doctors — himself included — are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.”

This documentary is based on Dr Gawande’s book Being Mortal.
BeingMortal
Click here for the NYTimes book review. 

I’ve personally found Dr Gawande’s observations to be true in my own experience with terminal cancer and medical professionals. Doctors are trained to keep on doing something no matter what — they are not trained to help you decide how to have the best life possible as you die. They are not trained in helping the patient have the conversation about their goals and priorities for the end of their life. You can’t count on the doctor to lead the way, sometimes the patient has to do it. And you need to do it sooner than later.

Since I will most likely be having this conversation with my team on Friday I watched this Frontline piece again with revived interest. I have let my oncologists know on multiple occasions, over the past 3 1/2 years of dealing with stage 4 cancer, that I would rather live 3 good months than 3 years of feeling sick with debilitating side effects. In the Frontline film, Being Mortal, I want to be the man that planned ahead enough to die at home with quality of life and not the woman that was in denial until it was too late and she could never leave the hospital or take her granddaughter to Disneyland.

Click here for another great read on this topic, ‘How Doctors Die – It’s Not Like The Rest of Us, But It Should Be’ —by Ken Murray, MD, Clinical Assistant Professor of Family Medicine at USC
“It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little.” —Ken Murray 

And this article, ‘How Doctors Die: Showing Others the Way —by Dan Gorwnstein, Senior Health Care Reporter for the Public Radio Program “Marketplace.”

PS: I discovered the Dark Chocolate Ensure is really tasty — yum!


Hope and Courage.com

posted 23 March 2016: http://hopeandcourage.com

 

Be Here Now

Be Here NowRamonaAndMeBeing Here Now With Baby Ramona on Friday


Friday I held a baby, for a long time, and that put everything into perspective. Babies put all of life into perspective — beings that only months ago weren’t here, and then there they are, new, fresh, growing balls of potential with brains, personalities, souls, and self-will. It will always be a marvel to me that two humans (with the help of God of course) can create another human being. Every time I see a pregnant woman my mind is screaming, “There is a human growing inside your body!!!”

Babies don’t care what is going on with you, they just want and demand immediate attention and that you Be Here Now. Anyone remember the book by that title from the 70’s? The author could have achieved his quest without the psychedelic drugs, guru, and travel to India, by just sitting and holding babies. They demand you live in the present and Be Here Now. I’ve always liked Carl Sandburg’s famed quote, “A baby is God’s opinion that the world should go on.” As I sat there holding, loving, smelling, and kissing that baby, I could hear the still small voice of the Holy Spirit say to me, “Don’t worry, I’ve got you, Be Here Now.”

With only a few more tests to go (PET scan Monday) I should be done with this info-gathering phase that started about a month ago. Then on Good Friday, March 25I’ll meet with my oncologist. By then she will have all the info and will hopefully layout what’s what, what her recommendations are, and then I’ll need to make some decisions.

What I’ve found out so far is there is nothing wrong structurally with my heart or lungs that could be causing the shortness of breath & rapid heart rate. I’ve been off chemo & other drugs for about a month and still get so out of breath with mild exertion that I feel like I’ll pass out. So either the damage from the drugs was permanent or the drugs aren’t causing it — no one seems to know. When in the hospital and on 24hr holter monitor last week my heart rate shot up to 120-150 with just mild exertion so I’m now on a beta blocker, even though my resting heart rate is below normal. Hopefully the beta blocker will help so walking about and washing my hair won’t totally exhaust me.

Medicine, especially when it comes to cancer, is not an exact science, it’s more of an art based on an educated guess. There often are no precise answers.

The only other thing that’s new is I’m needing to take pain meds pretty much daily due to some increased bone pain in back, pelvis, and ribs, where metastases are. The PET scan Monday will show whether there is progression in the bones, liver, etc. I’ve also lost 10 more pounds since they weighed me last so it was suggested I start drinking Ensure — smh, has it come to that — blech!


Hope and Courage.com

posted 20 March 2016: http://hopeandcourage.com

Hurry Up And Wait

Hurry Up And Wait

start into race

Dr Seuss knew quite a little something about life by the time (at 87) he wrote his last book, Oh, the Places You’ll Go! His message: At times life can be extremely hard, but stay on the road, tackle each challenge as it comes, and you will be fine (even when you’re not). I love the sentiment and have given this book to almost every bright-eyed, idealistic, graduate I’ve known — along with the caveat that the journey of self-discovery is where one’s heart and mind plan the way, and in the end the Lord directs the steps.

One of the places you’ll go according to Dr Seuss, is The Waiting Place, which he describes as “a most useless place.” I’ve learned a thing or two about The Waiting Place, the kind of waiting anyone with a serious illness knows only to well: waiting for a diagnosis, waiting for doctor appointments, waiting for the nurse to call you in, waiting for tests, waiting for scans, waiting for results, waiting for another test because the first one wasn’t clear, waiting to have blood drawn, waiting for blood results, waiting for surgery, waiting for a bed in the hospital, waiting for insurance coverage, waiting for the next symptom, waiting to see if drugs work, waiting for phone calls, waiting, waiting, waiting….

dr-seuss-waiting copy

I have to remind myself The Waiting Place is not a useless place. Waiting is a pause while remaining in the present, it is purposeful — to wait means to hope. When you’re waiting, you’re not doing nothing. The word ‘waiting’ means, “to watch over” or simply “watch,” watch, observe, and take notice. Right now I’m waiting to see if being off all drugs eliminates heart symptoms, waiting for follow-up doctor appointments: cardiologist March 10th & oncologist the 18th, waiting to see if the cancer grows while I’m off treatments, waiting for next steps, waiting for a new plan, waiting to see if this is the new normal — with terminal cancer one will always be waiting, waiting, waiting….

I have to remind myself the mindfulness of waiting can have great benefits even in the midst of hard places. It can keep you in the moment and not the past, it can free you from worry about the future if you are mindful in the present. In Western culture we are addicted to what’s next — mindfully waiting is a lost art. A lot of what seems like waiting is actually life itself, whether you have cancer or not. While I’m waiting this week I plan to enjoy listening to friends, eating slowly, long luxurious naps, giving my cat ear massages, riding with a kindred spirit in the country while savoring a latte, reading a bit, and having a little Netflix. And if I’m too tired to do any of those things, I’ll just wait.

One of my favorite Psalms, 27:14: “Wait on the Lord; be of good courage, and He shall strengthen your heart.”

Here’s a Seussian like poem written by a doctor, Gregory Carroll, about his personal experience with cancer and waiting:

Better late than never
Better early than late
Better prompt than early
So I just have to wait

Time changes rhythm
It goes fast and slow
What is the verdict?
Do I want to know?

My PET scans are lengthy
They go on forever
But the long night after
Is slower than never

My mind keeps spinning
The hour gets late
The nerves, the worries
The fears aggregate

The day’s little fragments
Feeling like a flashback
Playing back the same scenes
Can’t escape the sound track

So what did they mean?
Retake that one then
Another tumor
Inside me again?

Oh, I’m sorry ’bout that
There’s one scan that’s blurry
So we’ll try it again
Don’t worry … don’t worry.

Next day I find out
The scans are all clean
Due back in four months
I get past the screen

I’m elated of course
As the tensions subside
Yet the fear lingers on
In the dark, deep inside

There’s no evidence
That shows new disease
But abnormal cells
Could hide there with ease

Better late than never
Better early than late
Better prompt than early
Up ahead, the next gate

And click here for a delightful read of Oh, the Places You’ll Go! voiced by John Lithgow.


 

Hope and Courage.com

posted 05 March 2016: http://hopeandcourage.com

A Room With A View

roomwithview
The view from my bed in the hospital.


Well, the heart CT I was supposed to have last Tuesday got canceled (due to insurance miscommunications) so I proceeded to my regularly scheduled monthly oncology appointment Friday, at which time my oncologist kidnapped me. I was just minding my business telling her how the day before I almost passed out in the post office and had to sit down on the sidewalk a few times on the way there, and a few other shortness of breath, rapid heart rate, almost passing out incidences that past week — when she abruptly left the room, then came back and told me she was admitting me into Urgent Care right then and there.

What I thought was going to be a quick in and out at Urgent Care turned into 4 days in hospital — I just got out last night. After a Lung CT to rule out blood clots (many cancer patients die from clots, not their cancer), Heart CT, 2 Heart Sonograms, multiple Electrocardiograms (EKGs), blood tests around the clock, and being constantly hooked up to a 10 armed hydra like heart monitor — I was told they found nothing structurally wrong with my lungs or heart. That’s the good news. Now that the usual suspects have been eliminated the cardiologist thinks the symptoms are most likely due to the chemo capecitabine (Xeloda) and other drugs. I’ve been taken off everything for now and we are doing a wait and see if symptoms fade.

This presents a dilemma in that Xeloda was actually keeping the cancer in check and had even shrunk some lesions in my liver last year. It’s a drug generally well tolerated with fewer side effects than other chemo. There is a subset of patients that develop serious heart issues on Xeloda and I seem to be one.

A while back I had pretty much decided Xeloda was the last drug I was willing to take — I’ll be talking to my oncologist soon to see what else she might have in her magic bag. Once I have all the info, pros & cons, and have spent a great deal of time in prayer, it will be time to make some decisions. On one CT, taken this weekend, the radiology report said there was an “increase in size and number of multiple bilobar hepatic metastases,” which is just a fancy way of saying the lesions throughout my liver have grown in size and number since November. So Xeloda may have stopped working anyway to slow progression.

Since there is no medical cure and we are just trying to slow progression while maintaining some quality of life, it may be time to make the decision to stop treatments. I won’t know if that’s the best decision for me at this point until I hear all possible options from my onc (onc is patient code for oncologist). I have no fear of death, and my unexpected hospital stay confirmed what I would like not to go through on my way there. In the hospital I shared a room with a woman that was dying from stage 4 thyroid cancer — she had had endless chemo, radiation, and treatments that had left her literally unable to speak, eat, or walk. Her husband stayed with her the entire time and he confided in me he regretted many of the treatments they knew could not cure her and had taken away all quality of life she had left.

Today I read about Norma, a 90 year old woman who when diagnosed with cancer and treatment options was asked by her doctor how she would like to proceed, she told him: “I’m hitting the road!” Maybe its time I buy an RV — anyone want to join me?! Read about Norma by clicking here.


Hope and Courage.com

posted 01 March 2016: http://hopeandcourage.com

It’s not even 9:00am and I’ve lost a few spoons already

So last night I went downstairs to get the mail and opened the notice from my insurance company that they will not cover the Heart CT scan I’m supposed to have this morning. I’m still going to show up for the test. Dealing with the insurance coverage or lack there of will cost me a few spoons today. The Spoon Theory explains how peope with chronic illness plan their day – written by Christine Miserandino on But You Don’t Look Sick.com

The Spoon Theory written by Christine Miserandino

Hope and Courage.com

posted 23 Feb 2016: http://hopeandcourage.com

Heart Matters

hearts

This Tuesday, Feb 23rd, I’ll have a CT scan with contrast dye for a closer look at my heart after a recent stress echocardiogram showed something questionable. Over the past few months I’ve had increased shortness of breath, rapid heartbeat, dizziness, and more fatigue.

This is not totally unexpected since all the treatments potentially do heart damage, and affect red blood cells [1]. And bone metastases alone (of which I have a lot) disrupt your bone marrow causing decreased blood cell counts resulting in anemia that causes shortness of breath, rapid heart rate, and fatigue [2].

Red blood cells (made in bone marrow) carry oxygen throughout the body. With low blood cell counts, even during mild exertion, your body can’t cope. Your heart beats faster and increases your breathing rate so your tissues get enough oxygen. This is frequently not enough, leading to tissue injury or even acute heart failure. My red blood cell counts are consistently below normal. A normal count for women is around 4.0 to 5.0 million RBCs per mcL or 4.0–5.0 x 1012/L [3] –– my latest count was 2.9 M/mcL.

Even washing my hair now can cause exhaustion. I’ve been slowly doing less and less (working from home, going out less) due to shortness of breath and fatigue. Yesterday was a new level of wakeup call as to how much this is affecting my mobility. I rode the subway for the first time in ages, then some walking around Manhattan, and could barely stand at times or get up the subway stairs that only a year ago I could trot up. I don’t experience this so much when just walking around the apartment, or sitting, however once outside it seems even slight exertion halts me in my tracks. It’s not the same everyday, I have better days and bad days, but over all this is becoming more of an issue.

About Tuesday’s tests, hmm… I don’t know whether to pray for heart disease that can be treated or to pray they find nothing and then know these symptoms are just the inevitable progression of stage 4 cancer. If they don’t find any treatable heart disease it may be time to start thinking about stopping traditional cancer treatments all together. There is a point at which the treatment side effects outweigh the benefits, especially with stage 4 where you are just trying to hold off the disease with as much quality of life as possible. It’s not like other cancer treatments where they blast you with the big guns and the goal is a cure and then your body can later recover when all treatments stop. With stage 4 your treatments never stop, until you decide they do. (And that’s a topic for a whole other post.)

This month in Psychology Today there’s a fitting article about dilemmas that run through my mind on a daily basis. These are true not just for the chronically ill, but also for those with ‪metastatic‬ disease. Take a read (click here) and let me know your thoughts. What are your tips for answering these social and personal dilemmas? Share below –– I’d love to hear from you. (If you don’t see the place to write comments go to http://hopeandcourage.com and click on this post’s title and that should take you to this individual post page where you can leave comments.)

Psychology Today – Feb 11 2016
“Should I or Shouldn’t I?” The Dilemmas of Chronic Illness


[1] Can chemotherapy side effects increase the risk of heart disease?

[2] Understanding Bone Metastases When Cancer Spreads to the Bones.

[3] Low Red Blood Cell Count

Posted Feb 21 2016 by Hope and Courage.com

18 months turn into 18 years with stage 4 cancer

Read full article here: 18 months turns into 18 years for woman with stage 4 cancer.


This past year I traveled to the south of France on what I thought would be my last big trip. Now this surprising woman inspires me to start thinking about that painting trip to Florence I thought I’d never be able to take. Kristin Johnson St. Goddard in Seattle takes hope and courage in the here and now to a whole new level as her life expands, one day at a time, from an 18 month prognosis into 18 fruitful years and counting. Even though her longevity is not the norm for stage 4 breast cancer, it shows what might be possible. Since her diagnosis she’s traveled to Italy, France, Belgium and England.

“Although her situation is unusual, it’s not unheard of,” said Dr. Len Lichtenfeld, Deputy Chief Medical Officer for American Cancer Society. “When we look at cancer in general, there are always circumstances where we see patients that do much better than we would’ve anticipated.”

Yes, she is unusual, and she is proof that no one can tell you how long you have to live — only God knows the hour.

All the days ordained for me
were written in your book
before one of them came to be.
Psalm 139:16

“Who of you by worrying can add a single hour to his life?” Matthew 6:27

Click here for more stories of women living 10+ years with metastatic breast cancer.

Cancer Does Not Define Us

“Hers was not a story of cancer but of true beauty, which even the cruelty of incurable illness can’t erase. She refused to let cancer define her.”

 


I first learned about Jill Conley through the beautiful photography series by portrait photographer Sue Bryce, and the documentary ‘The Light That Shines’ – by film-maker/photographer Hailey Bartholomew.

“While cancer could batter her body and steal her energy, it could not extinguish her light.”  Laura Unger, USA TODAY

I wish I’d had someone like Jill in my life early on to help me focus on what was truly important in life as a young woman. Jill once tweeted, “Be confident and kind. These qualities are the essence of real beauty, which nothing can erase.” Like me, Jill was diagnosed the first time with breast cancer in her 30’s. I understand her sorrow at not being able to have children, and having disfiguring surgery at a young age that mastectomy with complications brings. She was able to embrace her scars and the changes cancer made to her body. “She never liked wearing prosthetics in her bra, or wigs on her head. She said early on: “I choose to be who I am — to be beautiful.” I struggled with the deformity and scars, and for years loathed the daily reminders of cancer on my body. Jill’s goal was to help women know cancer and their bodies do not define them, and to help educate women about breast cancer. Those are some of my goals now as well through this blog.

Through faith, hope, and love, she channeled her difficult cancer experience into something redemptive. She also founded a cancer charity, Jill’s Wish, to provide financial assistance to those with breast cancer, newly diagnosed or terminal breast cancer patients, who struggle to pay everyday living expenses. She had hope in this life and in the next — “He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” – Rev 21:4

Jill spent part of her last week discussing faith with journalist Laura Ungar, who stated that “Brzezinski-Conley said she no longer feared death. Brzezinski-Conley reportedly told Ungar that it “feels good” knowing she would see God, and added “there will be no pain or anything.” – Chris Serico, TODAY Health & Wellness

Jill died this week. Her mother, Rosemary Duchon said ” She went peacefully” and is now free of pain.

Watch a tribute to Jill here: http://www.courier-journal.com/story/news/local/2016/02/02/jill-conley-beautiful-brave/75699570/

 

#thelightthatshines