Being a Patient Patient

Patience is a virtue! Good things come to those who wait! I’ve heard the many wise quotes praising the goodness of patience. I thought I agreed with most of them, until I entered cancerland. In cancerland, patience is much more difficult. I think the author of A Thousand Splendid Suns, Khaled Hosseini describes it best…..”of all the hardships a person had to face none was more punishing than the simple act of waiting.” A punishing hardship is a good way to describe waiting in cancerland.

On Monday, April 8th, I had my 4th PET/CT scan. They are becoming fairly routine and I will continue to have them every 3-6 months depending on blood work results, symptoms, etc. It is not a routine that I am happy to be familiar with, but even difficult tasks are made easier by familiarity. This scan was at a new location with different people, but the procedure was pretty much the same (besides the fact that it was done in a trailer in a parking lot…….but that’s a story for another time!)

What was very different about this scan was the length of time I waited (not so patiently) for the results. After the first three scans, I received results within 48-72 hours. For someone who is not a patient patient (like me) that is long enough. I expected this time would be about the same. No word on Monday, obviously. Tuesday I waited with hopeful anticipation that my phone would ring, but again, went to bed with no information. Thank goodness for sleep aids.  By mid-day on Wednesday, I could no longer stand it and emailed my doctor. You have to be careful about calling and emailing your doctor. You have to balance the “squeaky wheel gets the oil” philosophy with “becoming THAT patient.” Afterall, you want your doctor to like you so that he/she will think you’re worth the time and effort to try and save. But I digress…..

So within an hour of sending an email, that was short, efficient, and humble I might add, I received a response. But it was not from my doctor. It was from a nurse who stated that they will be happy to share the results with me as soon as they get them and that it could take 5-7 days. 5-7 days? Really? I wasn’t sure I could make it 5-7 days, but I also knew I would be contacting them again shortly so I took a deep breath and continued to wait.

Thursday came and went and when Friday arrived…….I had to give it one more shot as to try to escape a tortuous weekend of waiting. I emailed again, and this time, received no response. Most people would have given up at this point, but, good or bad, I still thought perhaps I would receive an email over the weekend. My doctor works some strange hours and I have actually received emails from him at odd times like 10 pm and 4 am. So, I figured, why not the weekend? However, the weekend came and went and still no word!

Now, you might be wondering why this waiting is so horrible. Most of you probably understand to some extent, but I feel compelled to explain it anyway. For one, your mind begins to play games with you. You begin to wonder……..is it bad news and that’s why they won’t call or email? Is it so horrible they know I need to hear it in person? Did the scan get lost? Did they screw it up and have to redo it? Do they feel sorry for me and want me to remain ignorant for as long as possible? Does my doctor hate me? Is he sitting around with his colleagues having drinks and living it up because his workload is about to become much lighter after I am dead?  I could go on, but you get the point. This is why waiting stinks. Your thoughts become more and more irrational the longer you wait. Secondly, life is on hold until you get those results. School is out in just 6 weeks. I would like to plan my summer and a trip to go see my mother. However, purchasing airline tickets while waiting for results just might jinx me. Therefore I cannot proceed until I know! I certainly can’t begin to plan a trip that might be canceled if the scan results will lead to more surgery, chemotherapy, radiation, etc.

Monday arrives and, big surprise, NO phone call or email. My appointment is tomorrow and I am going in blind. No knowledge of what the report says. Monday was one of the worst nights sleep ever, even with Advil PM on my side!

I wake up this morning to about a foot of snow! I have the day off for my appointment and infusion, but Nick, and all the other metro area kids still have school! Unbelievable considering just one week ago today school was canceled for a whopping total of two inches of snow. But again, I digress. Mark picks me up and we are off to the doctor’s office. I am hoping that the snow will mean a slow day at the office, but no such luck. I guess I am not the only persistent cancer patient in the world.

The doctor walks in about 20 minutes late…….which actually is pretty much on time for the oncology department. Here is what he says to us………’so we need to look at a PET scan, which if I remember right, is good. I sent you a copy of it didn’t I?’ I am not often left speechless, but I was at this point! Seriously? I was quite proud of myself for not yelling, screaming, or cussing. I simply replied that ‘No Dr. Painandtorture, you did not send me a copy and waiting has been VERY STRESSFUL!’ To which he went on to explain that he has been at a cancer conference in Miami for the past week and anyway isn’t very good with email!

The results were dated 4/10/13 at 10:28 am. I suppose I could be really angry, but instead, I will focus on the positive! The scan results were, in fact, excellent. The spot on my spine is all but dead! Since it isn’t causing me pain or mobility issues, no further treatment is recommended at this time. There is also an area of metabolic activity at one of my surgery sites. The radiologist and oncologist feel it is an area of fat necrosis. Meaning, basically, that a small area of transplanted tissue has died due to lack of blood supply. But there is no mass or nodule that could warrant a biopsy. They will continue to monitor it, but it is not behaving like cancer. My organs are clear and there are no new bone tumors! Such a relief!

I will remain on my current treatment which is daily Tamoxifen and an infusion of Pamidronate every three months. My next visit with the oncologist will be in July. Unless new symptoms present, no scan will be done until October. However, I plan to interrogate my doctor ahead of time before the next scan is ordered. Any vacation plans doc? conferences? can I offer some free internet/email help between now and then? how long do you anticipate results will take? I don’t know if I can do another 8 day stretch like this one. I am hoping it was just a fluke! I am also hoping that they don’t block my number when I start calling them hourly next time, until they give up the results of the scan!

Obviously, I need to work on my patience. This incident is easy enough to let slide, probably because the elation of good news took over the anxiety of waiting. I can promise to always be patient if they can promise the results will always be good! Sounds like a fair deal to me! As the recently deceased Margaret Thatcher once said, “I am extraordinarily patient, provided I get my own way in the end.” 😉

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5 Responses to Being a Patient Patient

  1. Leslie says:

    Patience, I’m sure you’ve learned is a sequence of inhales and exhales with a whole lot of crap in between! Love you, my friend – here’s to planning more of your glorious life!

  2. Sarah says:

    I hear you my friend, I have been in similar situations and you are pretty much pooping yourself waiting. But I am overjoyed that the results turned out to be outstanding news!
    Now go make plans for a fun filled summer, you sooooo deserve it!

  3. Liz R says:

    Patience is way overrated. That wait was cruel and unacceptable. PERIOD! You have nerves of steel! So very happy for you. Enjoy a fun and festive summer!

  4. Melissa says:

    You do not need patience, you just need timely updates on your test results- not tooth to ask for! Dr painandtorture indeed! At least the results were fantastic and you can look forward to some sun and surf this summer!

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