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
There is some evidence that those infected with COVID-19 also may experience:
  • Loss of taste and smell
  • Diarrhea or other gastrointestinal issues
  • Sore throat
  • 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
  • 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

Studies have shown that placing a patient 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?

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.

Friday, February 7, 2020

Patient Hopelessness in the ICU

My family has a long history with the ICU.  My mother first ended up in an ICU in the '80's when she went into pulmonary arrest after a minor surgical procedure. Her children visited her room two at a time, standing next to her bed, a ventilator tube filling her mouth, her eyes panicked, a look that didn't leave until the ventilator was removed.

Luckily my mother didn't experience the ICU again until her death, this time all of us able to visit her coma-laden body at the same time in the ICU after she'd experienced a major stroke. We spoke to the doctors of the damage to her brain, and decided to honor her advance directive and remove her from support. A cart of food and drinks for the family, what I began to refer to as the Death Cart, mysteriously appeared next to the door, and the room filled with the smell of dying.  We were able to help her die peacefully thanks to pain killers, but her children were indelibly marked, grieving her sudden and tragic loss.

Sadly, soon after my mother's death my sister spent time in the ICU, again on a ventilator when she was not able to breathe after a minor surgery. But this time the stay was longer. Let me tell you what happens when a patient has an extended stay in the ICU. My sister was on a ventilator, highly sedated. After a period of time she began to try to pull the tubes from her throat, leading to more sedation and finally physical restraint. This then led finally to a psychotic break - up to 85% of ICU patients will experience ICU psychosis. My sister became more and more panicked, writing notes to us begging us not to let hospital staff kill her, begging us to stay by her side. We obliged. Finally, my sister was taken off the ventilator, but she never really recovered.

Now my turn. Last Thursday night I began to vomit blood.  This gastrointestinal bleed earned me a spot in the ICU, my careful doctor wanting me to be closely observed after stopping the bleed.  I was tethered to monitors and IV poles via an adhesive pulse sock on my right index finger, adhesive leads on various spots on my torso, two IV's, one in each arm, an oxygen calendula in my nostrils, and a blood pressure cuff that inflated so tightly on the hour a bruise was left on my right arm.  I was conscious and lucky to not be on a ventilator. If my blood oxygen level dropped below 90, the monitor would alarm. If the IV bag line was blocked or the bag was empty, the IV would alarm. If the blood pressure cuff didn't fully inflate, the monitor would alarm. If the contact on the pulse sock didn't read, the monitor would alarm. The lights outside the room were never lowered, and the curtain drawn across the glass wall didn't block that light. The multiple monitors and IV displays lit the room.  And each time the alarms sounded, the staff ignored those bells, likely to keep their sanity, leaving me to listen to the constant piercing sound. And when I would press the call button, the staff was often busy with other patients, so I was forced to listen to that sound until finally someone would arrive.  I couldn't sleep. I couldn't relax. I was increasingly anxious. I suddenly understood why my sister lost her mind.

On top of that, while I was in ICU, two other patients in ICU died. Luckily, I was mobile and I'm smart, maybe the kind of patient nurses love to hate. I learned how to disconnect the leads and silence the alarms for a few minutes at a time, so that I could walk down the hall and use the restroom instead of the in-room commode. This meant though that I was seeing the grieving families, the Death Cart, the patient in the process of dying each time I walked out of my room.  I was in ICU with hopes of living, and instead I was reliving my own family's grief memories, and forced to face the fact of my own imminent mortality from Stage IV breast cancer each time I needed to take a bathroom break. And I had to take many bathroom breaks (better than edema).

After a period of time, the doctors and nurses began to tell me I no longer needed to be so closely observed, I could be moved to a regular room. But winter is the time when hospitals are full, thanks to the flu, and no regular rooms were available for my move, so I had to stay in ICU. That meant I had to follow ICU protocol and remain tethered to monitors, calendulas, and IV's, and continue to listen to the constant alarms.  The problem was that I began to feel trapped in this world of alarms, never-off lights, no rest, and death. And with each day I stayed trapped in this world, I lost more and more hope.  A close friend once told me that he knew there was trouble when I began to lose my sense of humor.  After day three in ICU my humor was entirely gone.  The ICU staff was kind, caring, they meant well, but I didn't belong there and the sense of hopelessness was getting worse and worse  Frankly, I've begun to believe that no one belongs in ICU, at least not with the inhumane, alarm-driven, lights up way ICUs are designed now.

Day four I was finally moved to a regular room, but at that point, the damage was already done.  My mood did improve as soon as I left ICU, but an encounter with a cruel nurse on my final day at the hospital dropped me back into the ICU hopelessness.  I came home feeling sad, demoralized, and tearful.  And the problem was worsened by the fact that no one else seemed to understand my experience.  I just wanted to drop into someone's arms and sob. Instead I sobbed by myself and I still can't seem to let this sadness go. Luckily, the hopelessness seems to be morphing into anger, and for that I am grateful.  I'd rather be angry about this horrible experience than to internalize it as a hopeless loss of the will to live.  I am still trying to find a counselor to help me deal with all these feelings, because honestly, how is a stay in an ICU, watching others die, any different than the grief and trauma of a tragic death of a loved one or the death of a classmate at a school?

I personally do not have the energy to fight the world of bad ICU design.  There has been research and solutions proposed to re-humanize the ICU by changing lighting and reducing sound.  I do know I never want to end up in an ICU again. I've added a DNR and instructions to remove any ventilators past hour six to my advance directive.  And, if I end up in an ER again, I will fight like hell to stay out of ICU.  I would rather lie on the floor in an ER than spend any time in another ICU. I just don't think I have the energy to fight the death, alarms and constant light.

Wednesday, November 27, 2019

What Are the Ingredients In Your Shit Sandwich?

As a cancer patient, I live in a weird world.  Something about the word cancer throws people into a tizzy.  As soon as I tell someone that I deal with cancer, I get the feeling that images of the bald, gaunt, hooked to an IV pole patient comes to their mind.  To that person, I become the image of walking death. And that is how the person I'm talking to begins to treat me.

"Oh, I'm so sorry," the person might say, pity filling their eyes.

Or the person I'm talking to might not say a thing, but their behavior will change. 
Every time I see that person, they'll ask, "How is your health?" That's the most common question I'm asked by this type of person, as if I am living, breathing medical chart waiting to give an update on my health status. My health becomes another person's obsession, the only subject they deem worthy of conversation with me.  Frankly, I'd rather talk about ice cream, movies, even the ingredients of asphalt vs my health. The only defense I've found against this question is, rather than answering, to simply ask, "How's YOUR health?" They get the point.

Here's the irony though. Many people in my life deal with serious medical conditions. I am in that age group of above 50 so this is a part of life.  Fibromyalgia, ruptured/herniated discs in the back causing unbearable pain, brittle diabetes resulting in neuropathy, blindness, amputated feet. These are disabling conditions, often taking a person down to their knees, removing all or most quality of life.  But still, when I talk to someone from this suffering group, I'll hear statements like, "Oh, but I don't have it as bad as you do."

And I'll think, "Sweetie, you have it far worse. My pain is minor at this point, and I still get out of the house. You, on the other hand, are crippled by constant pain and entirely house bound."

I've tried to explain to this group that I am not identified by cancer. I deal with it, but I have a life as well. But to no avail. The comments continue.

Finally, the other day, I was talking to a friend whose condition involves constant, unbearable pain.  We were actually talking about her health, which is understandably a consuming topic for her (pain does that to you). But, after talking about neuropathy so painful she can't stand the sheets to touch her feet, yet another surgery to fix deteriorating muscles in her hands and feet, and other pain-filled issues, she felt compelled once again to say, " Oh, but I don't have it as bad as you do."

I was ticked. Once again, the cancer concept put me in a separate group in her mind, the dying group. In my anger,  I quickly blurted out, "The truth is we both got served a shit sandwich. Yours is just filled with different ingredients than mine." She paused and she finally agreed.

There it was. The truth I'd been trying to tell people for a long, long time. I don't have it worse than anyone else who deals with a serious, disabling condition. We all have it the same.  We got served a shit sandwich, the ingredients just are different. And life being life, everyone eventually will be served with a shit sandwich. That's how aging and health works.

I'm not sure if my repeating the shit sandwich statement will make a difference in how people talk to me once they find out I deal with cancer (notice I do not say I have cancer but instead I deal with cancer). Mostly it felt good to say this in response to yet another "you have cancer so you're out of luck" generalization. Mostly I avoid telling people about the cancer. Saves me time. But there are times where I have to tell people or they already know, so it's nice to have a response at the ready.

Cancer is not worse than any other of the many horrible conditions out there. It's about what is happening at that time in that condition.  I have good days. I have bad days.  I have friends with chronic pain conditions who also have good days and bad days.  We have that in common. And that's what I wish people would focus on instead, what we have in common.

Cancer is horrible, but it's just a disease. I'd rather focus on the day I'm in than on the image of myself dying a horrible, suffering death. Helps me keep my sanity.  So if you are lucky enough for me to take you into my confidence and I tell you I deal with cancer, rather than focusing on the image of cancer death that you may have in your mind, pay attention to what I'm saying about my life and feelings instead.  Because remember, eventually, we all get served a shit sandwich. The ingredients in your sandwich will likely just be different than mine.

Tuesday, March 5, 2019

R-E-S-P-E-C-T the Patient

After 7 years of living with metastatic breast cancer, I can say that I am now what they call a professional patient.  I have seen most everything, various rules, procedures, protocols cancer centers observe. But past that, I am also a regular human being.  I have a job, a husband, four dogs, two cats, a very active social life, and an extended family. A life.  I juggle that life with multiple doctor appointments, treatments, and diagnostic tests. Sometimes this can be a challenge.  I am lucky in that my previous and current bosses have been very understanding of my need to run to appointments or take time off for medical needs.  (Many cannot say the same.)

Still, managing numerous appointments with work obligations, family, and friends is a challenge. And lately, the challenges have been increasing.  I recently switched oncologists with the goal of working with a doctor who would listen to and respect my goals in treatment. This was a good move. With that move, though, I've had additional appointments so I could be introduced into the new system. Along with this, I've been newly diagnosed with portal hypertension, requiring yet another doctor appointment be added to my roster.

Learning this new system has been demanding at times. There was the run-around of discovering I could not print out the order for my tri-annual echocardiogram from the electronic records system to give to my cardiologist, who is not in the new hospital's system. This took a few hours and several misinforming phone calls, but I finally got it. I now know to ask for a print-out of the order from the doctor as she orders the echocardiogram. Lesson received. Learning the procedures in a new setting takes time. I catch on quickly. I expected this. Par for the course.

Today, though, took the cake. After I left my oncologist's office, I received several emails from the electronic records system indicating appointments were made on my behalf.  I'm not fond of people making appointments without asking me, but in this case they were appointments for infusions scheduled every third Friday at 1:30 pm (a day and time I'd requested ahead of the scheduling). The appointment I did not expect, however, was a visit to the lab for a blood draw at 11:45 am on the day of one of my 1:30 pm infusions, a time almost two hours before the infusion.  Accepting this appointment would mean I would have to use two extra hours of my sick leave, and after I would be stranded at the hospital for at least an hour and a half before the infusion.  I called the cancer center and asked if this appointment could be moved to my 1:30 pm infusion time, since the nurses tend to draw labs from my port. Nope. The scheduler insisted this was the way they did things and if I did not have the draw done at least 45 minutes in advance of the treatment, I would not receive the treatment. She insisted I would have to arrive for the 11:45 am lab appointment or else.

WTF? Show up two hours early for labs? In the past, the nurses drew the blood from the port, and the first results came within 10 minutes. If the basics were good, we went from there.  I expressed this thought and was again met with a wall.  After several minutes, the scheduler blurted she'd have a nurse call me, so I happily hung up and waited for that call instead.  Fifteen minutes later the same scheduler calls back and tells me, it is what it is, but they could move the appointment 10 minutes later to 11:55 am instead of 11:45 am.

When she asked if I could make this time instead, my reply was a simple, "I'll do my best."

Translation for "I'll do my best?"  I'm coming at 12:30 pm.  You said they needed the blood 45 minutes in advance, so I'll give you an extra hour. But I refuse to let you dominate my life by requiring me to waste two hours of my time because you want a two hour cushion.  I have a life and just because I deal with cancer, and will deal with cancer hopefully for years, does not mean I'm giving that life up in order to make you happy.

Frankly, I'm just stubborn enough,that if they refuse me treatment based on my not arriving two hours before the infusion, I'll go ahead and kick it, doing so right in their reception area.  This would be a spectacular advertisement for their cancer clinic.  I'm at the end of my rope with all of these extra appointments and rules that devalue my time.  Don't piss off a cancer patient who's at the end of her rope, because she might take you with her.

These little things, time-eating bureaucracy moments, matter.  I deal every day with a life-threatening disease, but I am still living my life.  Sitting in a hospital for two extra hours just because the scheduler says so chips away at that life.  Do not ask me to show up two hours early just because.  Print out that order for the echocardiogram and hand it to me, instead of forcing me to spend two hours calling multiple people in your organization only to find out I need to come back to the clinic for a hard copy of the order. Do not tell me that the requirement to add people to my HIPAA consent form, allowing loved ones to talk to my doctor about my medical needs, is that those people must come to your hospital in person in order to show their ID to you.  Some of these people live in Wisconsin and Minnesota, not in Washington, DC.  Rules for rules sake are simply a way to suck the life out of people who are already trying very hard to stay alive.

Respect my time. Whether you like it or not, I am paying a great deal of money for your service and for your doctors' and nurses' expertise.  Even if you've come to see yourself as the one with power in this relationship, ultimately, you are not.  I can move my business elsewhere. I can speak to someone higher up about how these crazy, odd rules affect patients.  And most importantly, I can choose to stand stubbornly in front of your desk, making YOUR life difficult, because that's the kind of people I come from.  You may outlive me in this exchange, refusing me treatment due to inane, burdensome rules. But you will be left with my dead body laid out on your desk, a smile of sick satisfaction on my face, and moving that stubborn dead body will be a bitch. I promise.

Sunday, October 14, 2018

Angels in Disguise

Riding the metastatic roller coaster can be challenging, to say the least.  As my friend Shera Dubitsky, a wonderful counselor at Sharsheret describes it, metastatic cancer is always there. It's like a radio that is always playing. Sometimes the volume is low and sometimes the radio is too darn loud.  For me, recently, the volume on the metastatic cancer radio has been too darn loud.

What that translates into is constant worry and an inability to sleep, which only adds to the radio's blaring sound.  This anxiety is certainly understandable.  I have just switched treatments, which has yet to be proven as working (scans are in December), and have been having to adjust to the side effects of this new treatment (Perjeta is particularly known for causing gastrointestinal issues).  On top of this, I've also just switched to a new cancer center only to find out that the new oncologist has a tendency to not listen to my concerns, it's a bit her way or the highway, and that the system has some confusing and strange rules such as all patients need to be out of the infusion center by 4:45 pm since all the doctors have left by then, no matter how the patient might be faring after their treatment.  My guess is that this rule is based on concerns about liability and the desire is to transfer that liability on to the street or to the local ER.  So I have been wracked with anxiety and concern for multiple reasons, and the result is that I have been spending my nights plagued by high-level panic and very little sleep.  This has taken its toll.

This last Friday was one of those nights.  I was up most of the night, panicked, attempting to get my mind off thoughts of the future by listening to music, reading, or just sheer power of will.  It wasn't working.  By the time my alarm went off Saturday morning I had gotten maybe 3 or 4 hours sleep out of the 8 I typically need.  I was exhausted, but once day comes, I usually can get up and go about my business.

Saturday mornings I attend an Alcoholics Anonymous meeting and I've committed to bringing a pint of half and half to the meeting for the morning coffee that is provided.  I parked, went into the local grocery store, and walked back to the dairy section.  An employee was working in the area, cleaning the glass doors of the cooler and re-stocking shelves.  The half and half was on the top shelf of the cooler, and far back, so my 5'4" self could not reach the pint.  I asked the employee if he could reach it for me.  He turned to me, said a few words, and then pulled the half and half off the shelf.  He handed me the pint, looked me in the face, quickly touched my shoulder and said, "Take it day by day."  At first I thought he was making a general statement to me, something he said to everyone, like "Have a blessed day" and I didn't think much of it.

But he continued by saying, "Whatever you're going through, know that there are people who care about you. Give it all over to God."  My mind registered shock.  I thanked him and then I walked away.  As I walked down the grocery store aisle, the shock increased.  How did he know I was in distress?  As I continued down the aisle, I almost broke into sobs.  I paid for the half and half at a self-serve checkout to avoid possibly breaking down in front of a clerk, and I rushed out the door.

Later, at my AA meeting, I told this story and then I finally cried. This man working in a grocery store did not know me, yet he had somehow sensed the yawning fear in my soul and spoken words of comfort to me.  He had provided the comfort I so badly needed, a human voice telling me that somehow everything was going to be all right, that all I needed to do was take it one day at a time.  That is the key to living with such a horrible truth as a terminal disease, take it day by day. But it is easy to move out of day by day and into the wreckage of my future when the disease becomes challenging.  This stranger was helping me to move back into a place where I had a little bit of control, how I dealt with the cancer during that one day, and letting my fears go to some other place, a higher power, God, or whatever you call it.  To tell you the truth, one thought I had as I walked out of the store was that I should invite that man to move into my house so he could say this to me every day.  I could use hearing this wisdom every day.

However he knew my story, he spoke a series of blessed words to me, words that save my heart and soul, and I am grateful.  He may have been stocking shelves in a grocery store, but to me he was an angel in disguise, a reverend, a rabbi, a teacher. Perhaps he needs to put down the milk cartons and pick up a preacher's stole instead. While the world does need milk, in my mind it is in greater need of words of comfort, and I am very grateful that that is what he gave to me.  I can't even think of how to repay his kindness, but I am very, very glad that on a Fall Saturday morning, after a night of anxiety driven by lack of sleep, I went into a grocery store to buy a container of half and half that was too high for me to reach, and I asked for and got the help I so desperately needed.  Thank you.

Monday, September 17, 2018

Lost In The Medical System

I have been at the same cancer center for six and a half years. My first oncologist saved my life, and then when she took a break from clinical care due to burnout caused by problems with management (hint, hint), another talented oncologist continued that excellent care. Over the years, the people providing my medical care from the doctors to the support staff, have become so important to me I invited them all to my wedding two years ago. Several showed up!
So, it breaks my heart to leave them for a different clinic, but I feel I have to because for the last several months I have been feeling lost in the medical system.
Feeling lost in the system has been taking away my hope. And hope is what helps keep me alive in this Stage IV cancer diagnosis.
For several years now, my health has been chugging along. I responded well to Kadcyla and tolerated the treatment well. No need to call in triage nurses, conundrums, or extra worries. Many months ago, though, I began to experience post-infusion reactions to Kadcyla – chills, fevers, elevated heart rate, faintness. Kick in the concern. Thus began the calls to the triage nurses and contacting the doctor, and thus began the very slow, almost annoyed responses from the nurses.
After a few months of frustration, I spoke to the doctor. I asked if her patient load was too high and expressed I was worried she would not have the time for my now more-complicated care. She listened with empathy, and she acknowledged her patient load was heavy (she is an excellent doctor). I saw evidence after our discussion of her working to not take on too many new patients.
Things got more complicated.
My latest scans showed a spot with increased uptake on my rib, plus my already-lowered platelets dropped even lower and were not recovering. More calls, more slow response. At this point, I was becoming increasingly concerned with my safety. Lowered platelets that don’t recover between treatments make things dicey, but what appear to be allergic reactions to the treatment are even scarier (think of things going toward anaphylaxis). Quick response to serious concerns are key to patient safety.
That’s when I realized what was happening had nothing to do with patient loads.
After some detective work, I realized what was happening was that the clinic was extremely short staffed in terms of nurses and was also losing support staff due to burnout. Management had been promising to fix this nursing shortage for a long time, but this was a problem that was not being fixed. Because of my time with the clinic, I had seen nurse practitioners come and go (two nurse practitioners quit on the same day at one point and that is very telling of a management issue). This shortage of nurses means the doctors and nurses become overworked, and support staff burn out having to handle regular duties, along with increased numbers of frantic patient calls like mine.
I am a vocal self-advocate, and I was losing hope in this lost in the medical system experience. What was happening to other, less vocal patients?
I considered staying; these people saved my life and my spirit. But after another experience of asking for help and feeling lost yet again, I had to face the fact that this was something that was going to take a while to set right. What I needed right here, right now in my increasingly complicated medical situation, was a doctor and nurses who responded on a timely basis.
I made an appointment with a new oncologist at another clinic that had a nurse practitioner ratio of one nurse for every two doctors, and I have since moved to that new clinic due to the presence of those nurse practitioners, along with the fact of the new oncologist’s competence. The new oncologist remarked during our appointment that no place was perfect, and she was right.
The new clinic has its own issues, which I’m quickly discovering. But as long as I can reach a triage nurse, nurse practitioner, or doctor and get the help I need, the rest I can work around.
I’m still not clear why the previous cancer clinic has not been doing more to hire much-needed nurse practitioners. I do know that because they were not on staff, I was lost in a medical system. That added to fears for my safety, sadness over the loss of folks I had come to value and a dangerous loss of hope in an already challenging metastatic cancer situation.
So, I’m off on a new journey that has its own challenges, I’m sure.  The one thing I hope that is true, though, is that when stuff hits the fan, I’ll at least be able to get through to someone who can help.
Because that sense of “we’ve got your back” is one of the most important things for anyone dealing with a dangerous, life-threatening medical situation.

Originally published via Nancy's Point as Metastatic Monday Featured Point 9/17/2018.