Big Sis In Burgundy: The Most Difficult Day
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 (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.
Deborah Dietzler is a columnist at The Myeloma Beacon. Her sister Deana has multiple myeloma.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
I'm so sorry to hear of these difficulties for Deana and the rest of you. There is just nothing worse than those who you expect to be "senior" to you in information who are not all on the same page and making decisions on the fly that differ from your understanding even if they are the right ones. I will say, it was one of the things that Dave and I enjoyed most treating in a facility where everyone was affiliated with MM and its process in treatment. They all gave us the same answer to our questions again and again and we experienced very little in the way of contradictions. Having said that, we were still vigilant as no one can escape the human error factor. The good news was it was strongly encouraged for us to question and check everything they were doing. The bottom line is, despite the difficulties, will all that is being done get her where she needs to be? Stay focused on the end game while doing your best to hold up all the spinning plates. You have a great team looking out for her. Keep your eye on the results. And to note, we had the double lumen port and did run into folks in the clinic who were in two camps on them. One camp said we couldn't transplant with it, but we did (twice). They told us it wasn't big enough, but it was. We were told it was more susceptible to infection, yet we had none related to the port. Then there was the camp that loved them and their take was that the other camp didn't understand them or know how to use them and that they were terrific. The only reason we had one while everyone else had something different, was my husband didn't want "those things" sticking out of his chest. A pure vanity choice. He still has it in, as they are good for 5 years, and it is used for his weekly maintenance. We have had no problems with it, though I know that's not true for everyone. But I knew many in Arkansas that got infections in the other triple picc line. Another "no clear choice" dilemma in treating MM!
I am sorry to hear about all the confusion and pain in inserting the central line. I remember that procedure well....I was so nervous about that...more than any other procedure I have had. I think it was because I saw it as being 'invasive' and it sort of solidified the fact that I was ill enough to need this procedure. The technicians actually laughed at, or with, me and asked what I was so worried about! Of course, I don't think they have had to go through the same process, and can only imagine it. I was sedated and for some goofy reason started singing in there, so I am sure the techs and the radiologist must have decided I was nuts!! I could see the whole thing on a monitor as they inserted the line. the line worked fine for several months and served it's purpose. Did they tell you to put baby socks on the lumens to ease any irritation of the lumens rubbing against the skin? You can attach them with rubber bands or pony tail elastics. I bought a package of cute little socks and got lots of compliments on them from the nurses. It took me back in time a quarter century from when my girls were little. And they were scrupulous about cleaning the lumens, and so was I , so had no problems with infection. The caps on them are changed regularly, according to a schedule. After the transplant, I really appreciated how they took blood samples thru the the line, and gave me hydration at times, probably other uses too which I have conveniently forgotten by now! (I kept a journal so I suppose it is all in there somewhere). Of course, they couldn't even have done an SCT without the line, since all those stem cells are too much to inject by needle. Interestingly, in an article by Pat, he mentioned raising his arms above his head before an injection to get the blood pumping through his arms. I had to do the same thing with my central line at times, lying on a hospital out patient bed, waving my arms around...must have looked a bit odd, but got the fluid running in the line. Yikes!! The experiences we get ourselves into under these circumstances!! Good luck with your ongoing treatments! hopefully the rest of it will go more smoothly. It's sure good to have family or friends with you throughout...they are a great support. I always had someone with me for the appointments for the longest time...
Good column. Your article reflects many of the same problems we have all faced during the course of treatment. Conflicting information, people who are not as familiar with you taking care of, procedures not being approved, beds not being available when chemo is due to start, the list goes on. All these things are incredibly stressful to patients and family who are are already stressed to the max by fears of cancer, an unfamiliar environment, loss of control. My wife, who is my caregiver. goes nuts over these things. As a physician I try to be a little more philosophical, see both sides, and view it a "system " problem. The treatment and hospital environment is incredibly complicated and there are many gray areas and differences of opinion. Most doctors, PAs nurses, techs are well meaning people just trying to do the best job they can. But as you say, there are times when just basic customer service should come into play. You sister is lucky to have the strong support system and help that she has from you. It is invaluable. I think the bottom line, as you have probably heard over and over is that during treatment and in the hospital, one most always be watching out and advocating for themselves or loved one and never take anything for granted. Try to be as educated as possible and vigilant.
Deborah, my heart bleeds for you and your family. How much your sister needs your advocacy! that should never be the case.
Hi Debbie:
This is hard for someone with anyone with a supply chain background to deal with. Let me add a little humor to the issue if you don't mind a digression to the world on bone marrow biopsy.
(This is a note I sent to my friends last year describing my bone marrow Biopsy. I now take sedation although it takes much longer. The story is all true although it reads like a TV comedy……Enjoy.)
Last Monday I was scheduled for my favorite procedure a bone marrow biopsy and aspirate. This is absolutely essential to measure the extent of Multiple Myeloma since the cancerous plasma cells reside in the bone marrow. This form of medieval torture involves the following (from Wikipedia):
The patient is asked to lie on his or her abdomen.The skin is cleansed, and a local anesthetic such as lidocaine is injected to numb the area. Patients may also be pretreated with analgesics and/or anti-anxiety medications, although this is not a routine practice.Typically, the aspirate is performed first. An aspirate needle is inserted through the skin using manual pressure and force until it abuts the bone. Then, with a twisting motion of the hand and wrist, the needle is advanced through the bony cortex (the hard outer layer of the bone) and into the marrow cavity. Once the needle is in the marrow cavity, a syringe is attached and used to aspirate ("suck out") liquid bone marrow. A twisting motion is performed during the aspiration to avoid excess content of blood in the sample, which might be the case if an excessively large sample from one single point is taken. Subsequently, the biopsy is performed. A different, larger trephine needle is inserted and anchored in the bony cortex. The needle is then advanced with a twisting motion and rotated to obtain a solid piece of bone marrow. This piece is then removed along with the needle.
My procedure was scheduled for 11:30. It generally lasts about 30 minutes so at 11:00 I took some oxycodone to relieve pain and anxiety. Carefully, reading the directions, the drug would be most effective one hour after administration so I thought I was safe. Now in my institution most people take a medication called a “lollipop” for anxiety. Basically the lollipop behaves like a cocktail and the waiting room is filled with drunks. It is party time. Not wanting to spend time sobering up after the procedure since I was scheduled for 2 ½ hour MRI at 3:00, I went with the oxycodone opiate which claimed to bring you down easy in about three hours.
At 12:00 I was still waiting. At 12:30 I was still waiting and growing anxious. At 12:30 I was ready to take a lollipop. Finally, at 1:00 one of the techs came by to tell me that everyone was gone for lunch but I would be the first person after lunch in about ½ hour. At precisely 1:30 a petite, frail gal came to usher me back to an examination room. She looked about 15. Two other “adults” were present munching on sandwiches. The petite gal took my blood pressure. It was 190/108. She asked me if I was nervous. I said “yes”. She asked me if I felt sick. I said “No”. She told me that my blood pressure was too high and they could not do the procedure. She suggested that I reschedule my appointment. Emboldened by anxiety, I became assertive and said no way. I asked to speak to the person who would be doing the procedure. You guessed it….it was she. I said lets check with the nurse. She said that was a good idea but there were no nurses around. I asked the luncheon crowd but they refused to give their opinion. "How about calling a doctor?", I suggested. Great idea she said. After much back and forth with the same inane questions, The telephone doctor agreed to go ahead with the procedure, since I was from out of town, provided they monitored my BP during the procedure. So we went ahead. Picture this if you can. I am lying on my stomach with a Blood pressure cuff on my arm, a little girl on my back trying to ram this huge needle into my back asking me “Does it hurt sir?” or “Your bones sure are hard”. After about 30 minutes of this process my hard bones relented and she was in. Oh Joy. With the needle in the hole so she wouldn’t lose its location the luncheon crowd examined the aspirate and the biopsy and pronounced them O.K. We were both exhausted. The sweat was pouring off me. They took my B P. No change. I told them I was nauseated. They did not seem surprised and took me back to the waiting room to join the afternoon lollipop crowd.
After about 15 minutes I knew I was going to be sick…big time. They took to an examination room. My BP was now 100/70. I asked them for a barf bag. They gave me a waste paper basket filled with discards from earlier procedures. That did it. They them decided I need to go to “triage” for proper treatment. At triage you meet with a doctor face-to-face who assesses your illness and prioritizes your treatment. They arranged for another perky young lady to take me there in a wheel chair. Off we went lickety-split from building to building through parking lots down long corridors I was getting sicker by the minute. Where was triage and the wonder doctors that would heal me? The young lady settled on a building and we took the elevator to the fifth floor. She told the receptionist my name and told them I was there for triage. The kindly lady behind the desk told her that there was no triage there. Yep, we were in the wrong place.
You get the picture. Two other recent hirees helped her find triage and I was saved. In fact I was so happy to get out of there I went for my fun filled MRI.
Deborah,
I am proud of you for being the best advocate a MM patient can have! It not only helps facilitate a good outcome, but it will be a tremendous comfort to Deana as she goes through this process to know you and Darrie have her back. Hang in there and keep up the good work, and it IS work!
Linda
(six months post-transplant and a retired RN)
Deborah - I wish that all caregivers / carers were as dedicated and in-tune as you are. My wife and her three sisters are cut from the same cloth as you and your sisters are. I pray that, in the time of need, my young daughters will grow into the kind of adults whom will follow suite. Love is a tremendous bond. Keep up the good fight and all of the best to your Little Sis! Thank you!
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