Sunday, October 17, 2021

Happy Birthday, You're Not Dead

Today is my birthday. I am 57 years old. For many, that is not too old. Frankly, it's pretty solidly middle-age in this world. But for me, it's old. Really old. 

I had just turned 47 when I got the news that I had Stage IV metastatic breast cancer to the liver. Before that, I'd always been stunningly health. Two years prior, my beloved mother died of a massive stroke, and there'd been question about how to locate her Advance Directive. The search took long enough that it was about to get messy, but someone finally found the document and we put her wishes into effect. The incident unnerved me enough, though, that I'd figured out if I got a MedicAlert bracelet, I could have that company keep a copy of my Advance Directive on file and health officials could call the company for a copy of my final wishes.

When I ordered the medical id bracelet, a lovely young woman called me to ask what I wanted engraved on the id. Diabetic? Congestive heart failure? Usually wearers listed a health condition. I had none to give, so I coyly suggested high cholesterol. Nope. Finally, we settled on "Call MedicAlert." That worked. But clearly, I had few health problems. I was still in the world of, I'll live a long, long, long time and die of heart failure or stroke at an advanced age, like my mother had done, and her mother had done before her. So the words "You have lesions on your liver" coming from the nurse's mouth didn't compute. Cancer? What the...? Stage IV breast cancer at 47? Sweet Jesus. No one in my family died of cancer. I wanted to go back into the They Who Die of Stroke group.

But let's be real. Life is not fair. I was now a member of the Cancer Club, sporting a fresh case of HER2+ metastatic breast cancer like a new Scout's badge. I hadn't even worked for it. Sure, I carried a few extra pounds and I had spent some time drinking a little too much. But HER2+ cancers tend not to be linked to lifestyle factors like fat or alcohol. And frankly, if fat and alcohol were the key, most of my family would have joined me on that cancer journey long before. Nope, that extra mouthful of sour cream increased my odds of heart disease but not of HER2+ breast cancer. I was just unlucky. HER2+ breast cancer tends to hit more younger women, the women less likely to be scanned because they're considered at lower risk.

When I was first diagnosed with cancer, I didn't think about the possibility that I might die. Sure, I made certain that my Will and Advance Directive were up to date. But my main focus was on getting through the treatment and tracking my progress, which luckily was very good. Looking back though, I realize there was a good chance that some around me assumed I was going to die. My estranged father and brother, both doctors, began calling me once a week to talk, which was unexpected. I didn't even stop to think that either of them were assuming the cancer would kill me. Frankly, I'm grateful I didn't know better. My liver was covered with lesions. Any doctor hearing this would, I'm sure, assume the patient in question didn't have much time to live. But I focused on the image of that cancer decreasing and going away. Weekly Taxol and Herceptin and incredible medical care made that happen, saving my life. And now, 10 years later, it is my father who is the one who is gone. You just never know who is going to go when. 

I have the bad luck of having Stage IV cancer, but also the good luck to have a cancer that so far has responded to the treatments aimed at it. And I have the good fortune to be assertive when it comes to my medical care. It's exhausting, but I push for good medical care, and do a great deal of medical literature research via PuMed.gov and other authoritative sources, which I then take back to my care team for shared decision making.  As I tell others, my doctors and nurses care about me and want me to live, but at the end of the day, this is a job for them, but for me this is my life. 

So here I am, 10 years later, turning 57, still alive. It is hard to believe.  When I realized the milestone today, I began to tear up. It's been a long 10 years, some of it good, some of it bad. But in the famous words of Stephen Sondheim, "I'm Still Here." Happy birthday to me. And here's to not being dead.

Monday, August 30, 2021

Finding A Higher Power

I've never been comfortable with the traditional Christian language sometimes used in the Big Book of Alcoholics Anonymous (I've been sober for a while now). A major tenet of Alcoholics Anonymous is to turn to a higher power for help. I figure something is out there, I just don't know what that is. But I don't feel comfortable with the idea of a God on high who makes things happen (a lot of very bad things happen and a god who doles out bad things scares the bejeebies out of me). What works for me is to see AA as a whole as my higher power, the fact that millions of recovering drunks are out there running meetings, volunteering to answer calls, making bad meeting coffee. That God with skin on has kept me sober for years. 

Friday, May 21, 2021

View From Stage IV: Ringing The Bell

Today, during my monthly treatment, another cancer patient rang the bell celebrating the end of treatment, while the staff happily and loudly clapped in congratulations. Meanwhile, hooked in to my never-ending treatment supply, I darkly thought the following:

For metastatic cancer patients, do they get to ring the bell as they die? Because we all know that's the end of treatment for them.

Black thoughts on a metastatic cancer treatment day.

Sunday, September 27, 2020

Can You Help Stop The Stripping Away of Protections For Pre-existing Conditions?

I remember the day in 2013 when the Affordable Care Act (ACA) made health insurance available to everyone. I had been diagnosed with metastatic breast cancer just the year before, was still able to work, but terrified that if I lost my job and my insurance I would not be able to get insurance, not be able to afford my treatments, and then would have no choice but to stop treatment, so would simply die.  At that point I was living in a world where a pre-existing condition like cancer meant no insurance company would even talk to me. I had personally experienced insurance denial, once being denied health insurance for having seen a counselor one time in the prior twelve-month period (I'm not kidding).

And I'd seen the effect of insurance denial on others. A dear friend had hepatitis he'd somehow gotten as a kid, and the only way he could get insurance was through a state high-risk insurance pool (not every state had these). He spent most of his monthly income on that insurance, and in the end that exorbitantly-priced insurance refused to cover the liver transplant he desperately needed. He was only able to stay alive because his medical team managed to somehow get him coverage via Medicare.

I'd also witnessed, while working as a temporary worker at a insurance company, insurance agents boasting that they'd denied insurance to various applicants, a man who had just broken his leg, a woman who had applied for insurance just after becoming pregnant. Agents would brag they'd cut costs for the company by putting a rider on parts of an applicant's body, such as a man's heart, since he'd previously had a heart attack. A rider meant nothing regarding the man's heart would be covered by the policy (tests, needed medications, etc.), guaranteeing the policy holder would not be able to afford medical care for his heart condition. Denial of insurance coverage was that easy, and people suffered and died because of it.

So when I was diagnosed with Stage IV cancer I was terrified of the moment where I would no longer be able to work and so would lose my work-based health insurance. Because of my terminal status, I would be able to get Social Security Disability Insurance (SSDI), although it wouldn't be much, but I would not be eligible for Medicare until two years after receiving SSDI - this rule is still in place.  Cancer care is expensive, although all medical care is expensive nowadays. My current treatments cost roughly $27,000 per treatment and I receive those treatments every three weeks.  A two-year waiting period for Medicare would mean those costs would lead to me losing my house and all my savings, and I'd likely be forced to stop treatment. And because there were no protections for those with pre-existing conditions at the time, after losing my job-related health insurance, I would not be able to get other health insurance to help cover the cost of my too-high-priced treatments.

That changed when the ACA was passed and health insurance was provided via the federal exchange.  One of main tenets of the ACA legislation is that health insurance companies can't refuse to cover you or charge you more just because you have a pre-existing condition. With this new law in place, I would be able to get health insurance and that gave me great comfort. And if you're questioning how insurance companies are faring in the world of ACA, they continue to see record profits. As the saying goes, the house always wins.

I do know that Trump recently signed an executive order stating protections for pre-existing conditions, however, this is largely symbolic. The only real protection in existence at this point is the current legislation in place via the ACA.

Now to what is keeping me up at night. With the death of Ruth Bader Ginsburg, the Trump administration is pushing yet another Supreme Count nominee through, and this one (Amy Coney Barrett) is on record as supporting the removal of the ACA and its protections for those of us with pre-existing conditions. If this nominee is confirmed she would be in place to hear and decide a new lawsuit against the ACA led by Texas and supported by the Trump administration coming before the Supreme Court on November 10. 

The Supreme Court confirmation hearings start on October 12, 2020.

Right now it appears most Republican Senators will vote in support of this nominee, but if people speak up, this might change. The only other time this situation has happened was during President Lincoln's administration. Supreme Court Chief Justice Taney died on October 12, 1864 and Lincoln chose to wait until after the election to put forth his Supreme Court nominee.  Lincoln did this in order to honor the voice of the people who were speaking through the democratic process of voting. In the same way, this is an election year and people are voting right now. As in 1864, a Supreme Court nominee should not be put forward until after votes have been counted and our voice has been heard. Certainly, this was the popularly held view of Republicans voiced in 2015, another election year. When Merrick Garland was put forward as a Supreme Court nominee early in 2015, Republicans in the Senate fought and delayed that nomination until after the election.  

No matter what your own political leanings, all of this is of vital importance. The voice of voters in this election need to be honored, and those with pre-existing conditions need to be protected.

So I'm asking you for a favor. I do not have a Senator since I live in Washington, DC (think taxation without representation). But you do. I am hoping you would be willing to take 10 minutes to find your Senators' contact information and copy and paste the below email to send to those Senators. I'm not sure I've had a decent nights' sleep since 2015, but this latest situation has me up at night even more.  And you'd be helping millions of others as well. Everyone ends up with a pre-existing condition, thanks to age, and in this pandemic millions more are entering the world of pre-existing conditions due to the long-term impact of COVID-19 on the heart, brain and lungs.

Whatever, you decide to do, thank you so much for reading this. It's a scary time for anyone with a health condition. I'm just hoping we don't go back to the world of being denied insurance for having seen a counselor one time in the last year, for having a broken a leg, or for having had a heart attack. That was a cruel and scary world to live in, and we need to keep protections in place for anyone with a pre-existing condition.  Thank you.

Contacting Your Senator

This is where you can find Information on how to contact your senator.

Letter to Send to Your Senator

Dear Senator:

With just weeks until the 2020 election, the Trump administration is rushing to confirm Judge Amy Coney Barrett as a Supreme Court nominee, while the people of America are in the middle of voting. Ms. Coney Barrett supports the aim of ending the Affordable Care Act (ACA) and the health and economic security it provides to millions of people across the country. 

If Ms Coney Barrett is confirmed, she would be seated in time to participate in oral arguments in the Health Care Repeal Lawsuit (California v. Texas) the Trump administration is backing, seeking to invalidate the Affordable Care Act.

The protection of legislation that ensures coverage of pre-existing conditions, especially in this time of a pandemic, is of vital importance to me and my family. I urge you to reject this nomination and wait until after the current election to consider any other Supreme Court nominees.

Thank you for you time.

Tuesday, August 11, 2020

Cancer Gossip

Because I do not look sick, once in awhile I get to enjoy the experience of being talked about. Not directly, but still, the topic is about what is happening in my life. Today, for instance, I logged on to an Alcoholics Anonymous Meeting via Zoom. It was a new meeting for me, so no one on the call knew me or my situation. The women chatted amongst themselves, talking about their day, their going-ons, their lives. Part way through the conversation, one of the women asked about another woman who was not at the meeting at the moment.  
 
A bit of a hush went through the crowd, and another woman replied, "Oh, you haven't heard. She was diagnosed with Stage IV cancer." A collective moan of misery seemed to go through the virtual room.  The sense of pity and sorrow was palpable. Now I'm not saying it wasn't right or decent for these women to feel sorry for their friend.  That is a good thing. But, still, I was there, someone who has been dealing with Stage IV metastatic breast cancer for eight years. And hearing that "she's dead" energy was certainly not what I needed at the moment. The other women didn't know about my situation, so I can't fault them. It is a fact that a diagnosis of Stage IV cancer of any kind is a horrible thing. For too many, it is a fast decline and horrible death. I get it. Not good news, and certainly something that should engender sympathy.

In my case, however, I have been very, very lucky. Thanks to the hard work of life-saving medical researchers, I've been allowed to continue my life with good quality, relatively few side effects, and the ability to keep working for eight years, although I've recently left work on medical leave. This is a different story of cancer. There is a good chance that I will die earlier than my family's good genes would have allowed, but, still, I'm here. And the me that is here is tired of hearing about cancer and tired of hearing the automatic pity fill the room when the news of a Stage IV diagnosis is brought to light. Oh, for one day of no cancer pity, misery, or conversation. That would be a day of true relaxation.

Generally I do not talk about my cancer diagnosis. I've discovered the hard way that it's a bit like admitting to a mental illness. People make automatic assumptions about me, and too often I've had the tone or look of pity thrown my way. I'll never forget being introduced to the new head of nursing at the infusion unit I had been going to for several years. In a medical setting I will throw out my Stage IV diagnosis in my intro to a key person just because it's helpful for them to know this detail in their work with me. This nurse had previously worked on the hospital's oncology floor where she had dealt with many other cancer patients. Thinking about it now, I realize that she likely had been dealing with patients who were not doing well, those sick enough to need a bed in the hospital's oncology unit. But in my case, I had been living a life of targeted therapy, continued work, a recent marriage, and nice vacations. We were coming from different places.  So, based on her experience, when I told her that I was one of the Stage IV folks in the infusion unit, her look of pity was immediate and piercing. And my reply was just as immediate.

"I don't need pity," I said. She was slightly embarrassed and chastened, and with a quick apology, she walked away.  The gap between us was clearly my lack of knowledge of her previous cancer experience dealing with probably very sick patients, and she was clearly not realizing that she, as a medical professional needs to be aware that her patients likely look to someone like her as a barometer of possible survival and wellness.  In this way, I have been very lucky as well. The nurses who worked with me for the first several years treated me the same as any other patient entering the infusion unit. They knew my survival would hinge on luck and good treatment, so didn't make assumptions on how I was going to respond.  They joked with me, asked me about my life, behaved as if I had the same chance of survival as anyone else. Clearly, I responded well.

Cancer is a complicated topic. As I said, many with a Stage IV diagnosis do not do well. But there are others who are biologically lucky and respond to treatment. Sadly, currently there is no way to tell who is going to have which response.  The trick of living with metastatic cancer is how to walk that thin line of which way will it go. Having strangers oooh and aaaah in pity does not help with this at all.  I was tempted, during today's virtual meeting, to stand on a box and tell those women that they have no idea how this friend of theirs is going to fare. The best thing they could do for her, as a friend, is offer concrete support (cooked meals, grocery shopping, rides to appointments) and the hand of quiet support. But I did not stand on a box during today's Zoom chat. In fact, I didn't say anything at all. Frankly, sometimes I'm just tired.

I still don't know how to handle it when pitying cancer gossip happens and I'm in the room.  In the past I have given myself permission to leave when the topic of cancer comes up, and I can still do that.  So the question is why am I writing this?  I guess it's just to let people know, from a cancer person's perspective, what it's like to be the unwitting subject of a conversation.  Truth is there's really no way to know who is dealing with what illness at this point in time since targeted therapies are much more common, and these leave a person looking like anyone else (no lost hair, fewer side effects, etc.). Along with this, old outcomes of cancer have also changed. New therapies mean more people are living longer, better lives.  So next time you hear about someone's cancer diagnosis, you can assume that this is hard news and that the diagnosed does need support.  But don't assume an automatic immediate death sentence for your poor friend. You never know. That person may just outlive you. And you'd be offering a great kindness if you treated that person like any other friend going through a rough time, rather than a friend who has one foot in the grave.  

Because as Valerie Harper said, after being diagnosed with metastatic lung cancer to the brain, "Don't go to the funeral until the day of the funeral." Remember, Valerie Harper lived six years after this Stage IV diagnosis, working much of that time. So it was a long journey to that funeral.




Monday, April 6, 2020

Caring For Yourself When You Have COVID-19

In this time of COVID-19, it's easy to find news about how to isolate yourself if you're infected, but challenging to find out how to take care of yourself if you have the virus.  The advice online tells your housemates to wipe surfaces you may have touched, and tells you to go into your room, close the door, and let folks know if you live after you've weathered the illness. Extreme?  Perhaps. But practical advice on how to take care of yourself when you've got COVID-19 is hard to find.  What follows is a compilation of advice gathered from a variety of sources which will hopefully help you take care of yourself or a loved one if you've had the misfortune of becoming sick with COVID-19.  

Reminder: this is not meant as medical advice or a replacement for consulting with a medical professional.  If you experience rapid, labored breathing, mental confusion, or your lips have become a bluish tinge, call your doctor or emergency services immediately.

What's In Your Medicine Cabinet

First let's start with what items you should add to your medicine cabinet before you get sick. Elizabeth Hanes, RN has created a helpful and informative list of medicine cabinet essentials. Here is the basic list.  See the article for further detail.
  • Thermometer
  • Acetaminophen (Tylenol)
  • Ibuprofen
  • Antihistamine
  • Decongestant
  • Multi-Symptom Cough, Cold and Flu Medicine
  • Guaifenesin (Mucinex)
  • Gastrointestinal Remedies
  • Electrolyte Replacement Beverage (Gatorade, Pedialyte)
  • First Aid Supplies
Another item to consider adding to your medicine cabinet is a pulse oximeter in order to measure the level of oxygen in your blood. This information can help you talk to your doctor about how you're doing. Typically, oxygen saturation for most people is in the 90's, although everyone's baseline may be different.  It's a good idea to measure your oxygen saturation while you're healthy in order to get a baseline. The COPD Foundation has helpful information on using a pulse oximeter in its knowledgebase article, How a Pulse Oximeter Works.
 

Caring For Yourself

Write Down Your Symptoms

In order to track how your illness is progressing, and look for trends in changes in your temperature, oxygen saturation, etc, write down your symptoms day by day. Here are the most common symptoms.

You can find an updated list of symptoms at Canada's Public Health Service
  • Fever
  • Dry cough
  • Fatigue
  • Difficulty breathing
  • Loss of taste and smell
  • Diarrhea or other gastrointestinal issues
  • Sore throat
There is some evidence that those infected with COVID-19 also may experience:
  • Headache
  • Back pain
The hallmark of COVID-19 is the dry cough and fever, which seems to improve after several days, and then can worsen again. Note that fever can be mild in older patients or patients with underlying conditions. The immune system gets weaker as we age or are immuno-compromised, and the fever response becomes less robust.

When measuring your temperature, use the same device each time and take your temperature several times a day. You're looking for a trend in temperature elevation.  If a fever isn’t responding to the use of ibuprofen or acetaminophen, this is a concern, and you should contact your doctor.

If you are in a vulnerable group with an underlying condition, pay particular attention to worsening symptoms such as increased temperature, and do not hesitate to contact your doctor.  One tip is to contact the doctor treating your underlying condition (oncologist, cardiologist, etc), rather than your primary physician, since you may get more focused attention from your specialist.

Back pain can also be a symptom of COVID-19.  Studies have found that around half of hospitalized COVID-19 patients have proteins associated with kidney disease in their urine. If you have other COVID-19 symptoms and develop kidney-area pain, call your doctor. 

If you are experiencing rapid, labored breathing, mental confusion, or your lips turn a bluish tinge, seek immediate medical help.

Ask Friends to Check In On You

COVID-19 has a pattern. Those infected appear to be improving after several days, but then worsen again. This is when Acute Respiratory Distress Syndrome (ARDS) can set in.  Because people who develop ARDS are not getting enough oxygen to their brain or other organs, they can become very disoriented, making it hard to call for help. If you’re sick, let friends know you’re sick and tell them to check in on you regularly.

Many areas in the world have set up adhoc organizations to provide assistance during COVID-19, but because of the adhoc nature of these organizations, they can be difficult to find.  Try contacting your local government office (your council member, etc.), or contact an organization set up to assist seniors such as one you may find via the National Association of Area Agencies on Aging (USA). They may know of organizations local to you that can assist you in setting up these type of check-ins or in arranging for delivery of groceries and medicines, and maybe even pet care.

Get Lots of Rest and Stay Hydrated

When dealing with such a serious respiratory illness, the key is rest. Lots and lots of rest. But also stay hydrated when you're sick, focusing on replacing electrolyte minerals like sodium and potassium. Pedialyte and Gatorade are particularly good for this purpose, but even fruit juice, soda, and other drinks will help as well.

Symptoms of dehydration include headache, dizziness and dark-colored urine. If you’re sick and you stop peeing, contact a medical professional.  At that point you may need IV saline to rehydrate.

Humidity Is Your Friend 

COVID-19 is a respiratory infection, and like any respiratory infection, it helps to keep the lungs humid to clear out the junk.  If you have a humidifier, run it in your room. If you don't have a humidifier, heed the advice of an old-school doctor treating my recalcitrant bronchitis, take two hot showers a day.  You'll be clean and it will help your lungs.

Anxiety and Breathing

Anxiety can worsen difficulties with breathing. Below are several tips to manage breathlessness and anxiety in order to improve the symptoms of COVID-19.

  • A tip from Dr. Laura Shoemaker (@LShoemakerDO), Director of Palliative Medicine at the Cleveland Clinic (Cleveland, OH), "When you are short of breath, you may feel anxious and claustrophobic. Looking out a window, even a closed window, can make you feel less anxious, and that by itself can ease your breathing symptoms."
  • And Dr. Rab Razzak (@rabrazzak), Clinical Director of Hospice and Palliative Medicine at University Hospitals (Cleveland, OH) recommends the use of square breathing to decrease anxiety and improve respiratory issues.  This gif is particularly helpful in guiding you through this method https://www.destressmonday.org/square-breathing/
  • Mindful meditation to help with breathing (Greater Good Science Center, Berkeley University, USA) 
  • Managing Breathlessness Using a Handheld Fan (NHS, UK)

 

Breathing Exercise to Help Maintain Lung Function

Maintaining lung function is key in keeping lungs clear in the event of a virus, and diaphragmatic breathing exercises have been shown to help with breathing. The resources below will help to keep lungs clear and improve lung function.

 

Proning or Postural Drainage to Manage Difficulty in Breathing (aka Sleep On Your Back or Side)

Studies have shown that placing a patient on their stomach, in a prone position, helps increase oxygen levels and manage the symptoms of Acute Respiratory Distress Syndrome (ARDS)

This HealthLine article provides helpful illustrations and descriptions on positioning in order to improve breathing: Postural Drainage: Does It Really Work?

Either way, sitting or sleeping on your stomach or side helps to get more oxygen into your lungs.

Primary Sources of Information

These tips were primarily pulled from the following sources.
If you really want to delve into even more information on COVID-19, take a look at the The Coronavirus Tech handbook, a crowdsourced library for technologists, civic organizations, public and private institutions, researchers, and specialists of all kinds working on responses to the pandemic.

Friday, February 14, 2020

Sex and Cancer: Getting Your Swerve Back On

Valentine's Day is a hot day for sex, or so the popular lore goes. But for someone who is dealing with or has dealt with cancer, this can be a loaded holiday.  Cancer treatments can push women into early menopause, bringing issues like vaginal dryness, atrophy, etc. into a bedroom, or, for men, result in erectile dysfunction, decreased libido or other bedroom challenges. So what is someone with a cancer issue to do on this most romantic of holidays?  Believe it or not, it is possible for a cancer kid to have and enjoy sex.  In fact, having orgasms does a body good, leading to less stress and a boosted immune system (What Happens To Your Body When You Masturbate Regularly (Bustle, March 2019) and for the  scientific explanation, Effects of sexual arousal on lymphocyte subset circulation and cytokine production in man. (Neuroimmunomodulation, 2004)).

So there's no reason not to get back into the intimacy business if you're dealing with the side effects of cancer.  The question though is how do you go about doing this? Luckily, there are a host of experts out there talking about just this topic. Memorial Sloan Kettering Cancer Center (MSK) offers guidance to patients through its Sexual Health and Intimacy services. And oncologists like Dr. Don Dizon have focused on the area, creating the Sexual Health First Responders Clinic at the Lifespan Cancer Clinic in Providence, Rhode Island. Also, sexual enjoyment companies like Jo Divine in the UK offers great information on Women's Sexual Health and Men's Sexual Health,  providing information on issues such as, Sex After Testicular Cancer, Sex After Breast Cancer, along with a whole  host of other sexual health topics.

So let's talk about the problem of vaginal atrophy, for instance, which makes the vagina and vulva (the skin on the outside of the vagina) dryer and less elastic; a common problem for many women during and after treatment for breast cancer.  Blogger Jane Lewis tackles this issue in Living with Vaginal Atrophy, and Memorial Sloan Kettering Cancer Center offers even more information in its October 2019 information page, Improving Your Vulvovaginal Health. Rather than resigning to a life without sex, there's hope. Non-hormonal hyaluronic acid products such as Revaree can be used to treat vaginal dryness, and for non-hormone sensitive cancers, estrogen-based vaginal suppositories can be used. In addition, pH balanced vaginal lubricants like Yes (my personal favorite) can be used during sex to make the experience enjoyable rather than painful.

Certainly, the resources above don't begin to cover all the information out there to help us cancer kids get our swerve back. If you have helpful info you've found, please feel free to tell us about it in the comments below.  But this is a good start, and hopefully can help you end your evening with the bang you so desire. Or at least this can help you make a good start of it. Find what works for you, take your time, be gentle with yourself and your partner as you go. But most important, you go get your swerve on.