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.

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.