It had been my intention to write this column about the terrific experience I had recently when I attended the MMRF Gala.  What a spectacular event – so inspiring.

But, I am going to have to save that for next time, because last Thursday was The Most Difficult Day – the most challenging 24 hours my sisters and I have experienced so far in our myeloma journey.

The Most Difficult Day made me appreciate even more all the wonderful people who do their job well when working with myeloma patients.

Let’s start from the beginning.

As you may remember, my sister Deana was diagnosed with multiple myeloma in April of this year. Last month, her oncologist cleared her for a stem cell transplant after the induction therapy brought down her plasma cell levels sufficiently to go forward with the procedure.

Fast forward to last Thursday, The Most Difficult Day.

Deana had her central line set that day.  I did not travel to Pittsburgh as our other sister, Darrie, said she would take care of it, and I am trying to preserve my leave time in order to be with Deana for the first week of her stem cell transplant.

I continue to find that if you talk to three different people on a patient’s medical team, you will get three different pieces of information about the same thing – and sometimes the same person will contradict herself within a matter of hours.  This is all so frustrating for people who are used to attention to detail.

Deana, as readers may recall, is an architect.  We’d all be in trouble if architects didn’t embrace attention to detail.   In my work, the “devil is in the details,” as we often say.  And Darrie, as an x-ray technologist, is well aware of the importance of attention to detail when dealing with patient care.

The week before, Deana and Darrie attended the transplant class.  They asked many questions and took superb notes.  A great deal of the information differed from the information Deana and I had received the day Deana was cleared for transplant.  However, we figured this was due to a desire to expedite the process, something we are all strongly in favor of.

As of last Tuesday, Deana had not heard any word about when she was to present herself at the hospital on Thursday, and she was getting concerned.   I was so pleased she took matters into her own hands (which is an indicator that she still has some energy).  She called her transplant coordinator and the insurance company to try to get a handle on things.  To her dismay, the insurance company told her the procedure had not yet been approved.

Then came The Most Difficult Day.

Things got off to a bad start as soon as Deana and Darrie arrived at the hospital in the morning.

First, we had been told Deana was to get a triple lumen apheresis catheter.  When Deana went back for the consent portion of the admissions process, she noticed that she was listed on the scheduling board as receiving a double lumen catheter.  She became concerned and talked to the doctor, who said his orders were for a double.

Darrie then became involved and explained that we had been told a triple would be used, as these are better in the event of infection.  It took more than 45 minutes to locate the transplant coordinator, and, when she finally had been reached, she said, “Just give her the double.”  No explanation was given for the change.

Deana already had been nervous, but this started sending her to the edge. There also was confusion regarding her need for a pregnancy test, which, while minor, added to the stress.

The worst, however, was what happened next.

When Deana was cleared for her transplant in mid-October, she and I were told that the procedure to put in her central line would be similar to how it was when her port was installed.  Deana would be in “twilight” and wouldn’t feel a thing.  Well, something went wrong there too.  Deana says she was wide awake for the entire procedure and it was so painful, she was crying the entire time.  Upon hearing this, I was just about in tears.

The day didn’t get any better.  At the transplant class, Darrie had asked if the central line would be similar to a “PICC” line, except located near the neck.  (A “PICC” line is a “peripherally inserted central catheter”; it usually is located on the upper arm.) .  The response to Darrie’s question was “no”.  But, again, this information was not accurate, as Deana’s central line is, in fact, in the neck area.

There was additional miscommunication about important matters, such as whether or not Deana would be receiving cyclophosphamide ^[1] (Cytoxan), and how she will get the needed shots over the next 10 days.  Finally, I decided I had to call a supervisor to see if I could improve the situation.

The person I spoke with was surprised to hear about all the issues Deana had faced so far.  I shared with the supervisor that many people don’t take the time to “complain,” and many cancer patients are likely scared to advocate for themselves for fear that, in doing so, they could be retaliated against and receive lesser care as a result of expressing displeasure.  I know that Deana is constantly concerned that people “will be angry with her because she got them in trouble.”

There’s a lot of preaching I could do on this subject, as my area of focus in graduate school was customer service.  But that’s not my point.  I am just trying to understand the lessons of what happened last week, so that things go more smoothly for Deana – and for all of you – going forward.

I am thankful that I am able to advocate for Deana and let those working with us know that we expect their best.  I find myself wondering how those who don’t have a strong support system get through these rough patches.

Battling cancer is tough work for patients and caregivers.   We need to recognize this and, at the same time, recognize that there is no excuse for making it any more difficult.

There’s also another side to the coin, however.

I know from my own work that organizations rarely hear from those who are pleased with the service they’ve gotten.  I therefore try to make a point of calling attention to quality work when it‘s done.

Since Deana’s diagnosis, I have sent notes and emails to her doctors and nurses, in addition to nominating one of her nurses for an award, and most recently sending cookies to the nursing staff at the facility in Deana’s community where she gets a lot of her treatments.

May we all find the strength in this journey to stand up for ourselves when needed, and may we all find the time to acknowledge those who have done their jobs well and have made our loads a little lighter.