I had another PET scan a couple of days ago and I am sad to report that I have a new spot of metastasis on my ribs. This wasn’t a total shocker to me since I had started feeling some pain in my ribs a few weeks ago, but I was hoping that was anticipatory pain of an upcoming scan. I wrote the following excerpt about a week ago that describes the feelings I was having leading into this scan.
My scanxiety has come on strong in the past week. Before every scan I start to feel pain somewhere. I believe this is a psychological defense mechanism I developed to prepare myself for possible bad news. To quote Tina Fey in the book Bossypants:
“I’ll be ready for it to happen and that way it won’t happen. It’s a burden, being able to control situations with my hyper-vigilance, but it’s my lot in life.”
This has happened enough to me that I know what’s happening and unfortunately it is real pain, it’s not just in my head. But I also feel like it is caused by the anxiety and worry of knowing another scan is coming up and with that a possibility that my life is going to get turned upside down again. It’s not even just the fact that it might mean the cancer is getting out-of-hand. While that is upsetting enough to think about, it is also all of the questions from family and friends and the looks of disappointment and almost disapproval in their eyes when I don’t have all the answers right away. It’s all the second-guessing and implications that I’m giving up or that I need some treatment recommendations and guidance. It’s the plethora of appointments, labs, and new medications that I know I’m facing. Basically, the thought of anything slightly bad showing up on a scan scares the heck out of me and the extreme dread I feel before a scan is predictable and real, apparently to the point where I feel pain in response to it. But, this time I felt like things were different. Everything was going pretty good health-wise for me. The only things I was struggling with were the medication side effects of hair loss and exhaustion (the hair loss is legit, I’m contemplating getting it cut short and permed to return some excitement to my head). Unfortunately last week I started feeling pain in my ribs. It was a steady pain that became sharp only when I laughed or coughed and fortunately was reduced about 90% with ibuprofen.
The fact that the cancer popped up again is reflective of the nature of the beast, so to speak. Cancer is smart and very good at growing. Our medications are good, really good for breast cancer, but until a total cure is found, it’ll always be a battle, particularly when it has spread outside the main organ and reached a stage 4 status, as mine has. The good news is that my cancer remains confined to my bones. My treatment will change slightly, but still remain a two pronged attack of hormone suppressing therapy and a type of oral chemotherapy (chemotherapy might be a strong word… immune-modulator might be a better term). I think one of the most difficult things about this disease is that it’s terminal, I will most likely die from this…but…not for a while. I’ve learned that most people, myself included, don’t really have the emotional support bandwidth to just “hang in there” for years while someone is dying. Either you’re dying within a month or cured, one or the other. And I feel like most people have been thinking I’m cured, not because they don’t care or even don’t understand, they just can’t focus that much sadness and empathy on one thing that is that far out, particularly when, as in my case, the person seems relatively healthy.
So right now I’m really processing a lot of emotions and will be figuring a lot of things out (health-wise and life-wise), but I’ll probably try to update this blog as my new treatments progress. In the meantime I discovered when I was writing this that I have a lot of pent up frustration and anger about COVID. I may or may not publish that never-ending saga of feelings, but for now I will focus on COVID as it’s affected my healthcare experiences.
I have experienced different amounts of inconvenience and irritation while visiting clinics during these COVID times. The first step obviously is getting screened at the entrance. This makes sense, we don’t want anyone with COVID coughing all over inside a healthcare facility. What is slightly confusing to me is that every clinic I go to (within the same healthcare system) has a different set of symptoms and they seem to vary in number from 5 to 20. Are GI symptoms included? Maybe, maybe not. One clinic asked about exhaustion. Aren’t we all exhausted? After listening to them rattle off 20 symptoms, I certainly was. What becomes slightly irritating to me is that at most (but not all) clinics I have to then proceed to registration where I have to answer the same questions. I get that this extra step is designed to prevent those that may slip past the first screening table either by just running past it or dropping down from the ceiling (not sure how else you’d do it). But the frustrating part is that at registration you are literally shouting at the person due to the combination of the mask and 6 foot rule, so everyone within the area can hear your answers. I experienced this when I went to get my scan and labs a few days ago. The scan itself went on uneventfully, but when I stopped by the lab afterwards, I was again asked the same COVID questions. This caused me to wonder…what exactly is the protocol if someone manages to stealthily avoid screening at both checkpoints, makes it up to the lab, then tells the lab tech (within about a foot of space) that they have symptoms/have a test pending/have had contact with a positive case…you get the picture. Is there an alarm? Is there a special “COVID clinic” they send patients with symptoms to? Do they just refuse anyone with symptoms? Do you have to wait 14 days? Also, I’m willing to bet that 50% of patients are lying when they answer these questions. Are you really going to delay treatment for some slight nasal congestion or a mild cough? The whole thing is just frustrating for me.
For this follow-up appointment, I should have known bad news was coming because the appointment got off on a bad start. First, I usually take the stairs up the 4 flights of stairs to the oncology floor. I think it’s good to keep using stairs while you still can and wanted to especially today because no one is ever in the stairwell, so I could limit my exposure to others. Welp (my new favorite word!), the stairs were closed. Of course they were. I guess because of COVID the plan is to shuttle everyone into a small elevator. And of course there was a small mob of 90 year-olds and their caretakers all clustered around the elevator waiting to get on. It seemed like we were all working so hard to stay apart that we paradoxically ended up roaming nearer to each other. Then, I hit an all-time high on the scale when they weighed me, so that was disappointing (I was carrying a hard cover book and I specifically thought if the weight was high, I was going to blame the book…but, unfortunately I know very well the book doesn’t weigh the 5 lbs I’ve put on in the past few months….I realize 5 lbs doesn’t seem like that much, but it’s still unpleasant). Then, of course I got the bad news that the cancer had returned to my ribs. So a triple bad appointment: I may very well have been infected with The COVID in the elevator (I like to refer to it as The COVID because that makes me sound like the 90 year old lady that I feel like sometimes); I’m getting fatter; and my cancer’s back.
That’s it for now, but I’ll probably follow-up in a few weeks with more of a detailed summary of what’s going on. Until then, I’d ask for patience. This is what metastatic cancer does, it spreads. Fortunately today more than ever we have many drugs and techniques to slow the spread and the fact that it is one spot in my bones after 2 1/2 years of dealing with this is pretty darn good.