Friday, June 12, 2015

Expectations and Low Platelets

Maybe my expectations about what I think a nurse navigator's job is, of how I think my oncologist should respond to my needs as her patient, or of what my former oncologist should do concerning me are simply too high. Maybe my disappointments with them should be explained away by saying "they are only human". I don't mind forgiving them for an occasional seemingly obvious lack of concern for my needs, but how many should be allowed?
CAT scan machine - from Bing images

On June 3rd at 9:00 am, I had the unpleasant experience of listening to that big white machine tell me to "breathe in" and then "breathe". Yup, I had another CAT scan. There was no pain involved except the needle prick through a vein accessed to enable fluid to be sent inside my body to highlight any areas of possible concern. The process went quickly, like the last time, and away I went to wait for the results.
I know there are several steps and people to pass by before the results ever reach the desk of my oncologist. Sometimes this occurs quickly; other times it does not. I also know my oncologist as well as others involved in my treatment have other patients to care for besides me, so I am never one to demand that I be taken care of first. I do have my limits, though, about how long I should wait.

June 3rd turned into June 4th and eventually I found myself on Friday at 4:30, June 5th, with no information about my scan. Monday, June 8th, was my next treatment appointment. If something was seen on my scan that would indicate a treatment change then there was no reason for me to travel two hours to find that out. I would be sent home only to return at a later date because insurance approval for the next treatment chosen does not have a fast turn-around time.

I made it clear fairly early in my treatment that I wanted to be notified of all scan results before my next scheduled appointment. What could possibly be the problem?

At 4:30 on Friday, I was anxious. I sent a message using the new message system at my treatment center-- nothing. As the clock ticked to 5:00, I decided to text my nurse. Not too many minutes later I received this:

Waiting for doctor to report. Soft tissue of neck and abdomen appear normal. There is one nodule in lobe of rt lung that was 3mm increased to 7mm.
There were several texts back and forth between us. I was trying to process all this information while in the grocery store with 3 of my children. It is hard to see labels with tears in your eyes.

The nurse didn't think there would be a treatment change, but ultimately that decision was up to my oncologist. I was not to cancel my Monday's appointment.

At least she responded to my text. But why did I have to initiate the conversation?

At home, I reread every scan report I have had over these two years. I convinced myself that this one nodule suddenly being seen after several clear scans may in fact be scarring after a childhood infection or perhaps inflammation left over from that illness. I knew I had at least one of these nodules, so perhaps that is all it was. This perked me up a bit. Life continued.

Monday arrived and after waiting for my name to be called, my husband and I were seated in a room I have been in numerous times. Not too long after we made ourselves comfortable, a knock came and in walked my oncologist. Greetings were exchanged. She walked to the sink and washed her hands as is always the procedure. While she dried her hands with a paper towel, she began.

"There is a nodule that may or may not have grown 4mm. I compared this nodule to a scan you had in April 2013. Then, it measured 6mm. I don't think this is concerning."

She explained again to me the nature of a CAT scan; A 2mm picture is taken, and then a 2mm picture is not taken. The machine continues dissecting in this way until there is no more tissue to scan. Since there are some missing parts, the parts are put back together to make an image that a radiologist can read. Because of this, there is some guess work done on the part of the person viewing the scan. This means what appears to have grown 4mm may or may not have grown at all or was always that size but not seen before.

She alerted me she would have the in-house radiologist look at the scan to get their opinion of the nodule. The radiologist that produced this report was located in the same facility I had my scan. That one is close to my home. My doctor wasn’t concerned about the nodule and believed it most likely was not cancer but one of those harmless nodules.

Waahhhooooo!! I can relax . . . for now.

With that out of the way, she confirmed my platelets were still low. Three weeks ago my platelets were at 77 or rather 77,000. My current treatment drug was reduced by 20% so I could be treated. On this day my platelets were 82,000. An improvement but not significant enough to be receive treatment. My doctor wants to see my platelets at 100,000 so I can have my drug given at full-dose. The plan was for me to have my blood count done in a week (locally) and if the platelets reached that magic number of 100, I would have my next treatment the following week.

Before our conversation closed, I asked about being notified about my scans. Why she asked if I wanted to be informed of any bad news before an appointment baffled me. She did just have a baby in January, so since I didn’t see her a lot during those last few months of her pregnancy, I will give her the benefit of the doubt that she somehow forgot. Did she? I doubt it. Two years of trying to build a relationship with her seems to have failed.

First she explained the nurse did not like to give bad news— that had already been established before and at this point I thought “I don’t care.” Since the nurse had not heard from her and did not want to interpret my scan without hearing from her first, the nurse wanted to wait before I was contacted. Then she told me that most people prefer to be told about scan results in person. I suggested, as a way to make this easier, the nurse could text me or leave a message on the new message system for the hospital.

“No”, she said, the nurse “would rather speak to you in person.”

The conversation had become uncomfortable for me. I kept thinking, “Why didn’t the nurse call me with that simple update just as it was relayed to me now?” The even more important question was why didn’t my doctor call me? Could my expectations be too high? Somehow I think we will be re-visiting this conversation in the future. UGH!

Next issue—blood-work.

I hope everyone has someone who can manage their care when they are too sick and weak to do it themselves. If I was not able to care for myself and had no one to help me, I would not be getting blood-work done today.

During our recent meeting, my oncologist had told me to get my blood-work done locally either by my primary care doctor or my former oncologist. This showed she was at least aware of the distance I had to travel to see her. This way I would not drive so far with the possibility of being told I could not have treatment. With that plan in place, I was given no further guidance of how I might get this done. (My primary care doctor retired last year. I have not found another.) Navigating our healthcare system seems to me to be far more difficult than it should be. There are locked doors everywhere. Doors that can only be unlocked by other healthcare professionals. So why I was sent out into the jungle to do this on my own, I have no idea. 

I called my former oncologist’s office. After going around and around with the a nurse about who I was and what I needed, we finally decided I had to get an order sent from my present oncologist’s for this simple request of getting my blood counts analyzed. I worked that out. It took me staying on top of the request, but it was finally done. Soon a call came from another nurse to set-up a time to get this done. Time set—yeah, all done.

Well . . . nope. Not quite.

My phone buzzed. I answered and soon discovered my old oncologist decided not to allow me to have blood work done in his office because he hasn’t seen me in a long time; translation—I don’t think he knows who the hell I am. So, I am told I have to go elsewhere. It is late Thursday. This blood work is supposed to be done on Friday per the request of my oncologist. I verbalized my frustration to the nurse on the other end of the line. She was a bit gruff in the beginning, but actually turned out to be one of the nicest I have encountered in a while. Maybe she understood my frustration. She suggested I go to Labcorp.

“They may take walk-ins,” she said.

My next thought was to go to Medac-- oh wait, I am sure they will need an order from my oncologist.

After learning, again, life is never free of complications, I sat down in a Subway restaurant and opened my computer to search for places I could have blood work done on a walk-in basis. My daughters and I were away from home and it was around 3:30, so I thought I better start to figure out what I was going to do.

My search began, but was soon interrupted by the buzz of my phone.

“Oh,” I said. “Thank you. And, tell Dr. A. I really appreciate this.”

My former oncologist had changed his mind, again. I am not sure what happened on the other end of the line, but I didn’t need to concern myself with that cause a door had opened for me. I was getting my blood test done!

So, there it is. My expectations of how my doctors and nurses involved in my care respond will always be high. I am paying them for a service am I not? Unfortunately, I feel certain I will be disappointed again. Thankfully, I have jumped some hurdles for now. I see the next one coming at 3:00 today. Let’s hope I clear it. 

Oops, I knocked it down. Platelets have only risen slightly to 86,000. Disappointing.

Monday I will find out for sure (if I receive a call) if treatment will be delayed another week. Darn platelets . . . grrrrrrr. 


  1. I am always having to remind my oncology office about tests they said they would schedule, updating me on results etc. It is frustrating, but it feel like I have to do it or it doesn't get done. :( So frustrating, I am glad you found a shorter route to getting your blood tests done!

    1. Mandi, It is nice to see you here again!
      I am glad we are both well enough to stay on top of what needs to be done for our healthcare, but it shouldn't be this way. It is frustrating, maddening, and plain wrong. Yup, I don't know if you can tell, but I am mad again. Yesterday I was told someone would call me to cancel today's appt because more time is needed to let my platelets recover before I am treated again. A new appointment would then be scheduled for Monday for treatment at a reduced dose if my platelets are still low. Well, no one called. I called at the end of the day and was able to cancel my appt, but the person would not reschedule without my nurse's okay. GRRRR! There is always something to worry about.