It's been a few weeks since my last blog, mostly because I haven't had any weird thoughts that I just needed to get out. However, yesterday I narrowly avoided a very embarrassing situation when a side effect of my treatment caught me by surprise on my way to tennis. I will spare everyone the details, but I am glad there were no police officers around as I exited the highway and flew to the nearest gas station.
What this reminded me of is that really since the day of my first treatment anything that happens with my body, I quickly try to categorize in 2 ways. First it goes into a "type" bucket. I have 5 buckets -- symptom, side effect, sign of aging, standard illness, sign I am going crazy. After it gets into one of these buckets it goes either to -- tell my doctor, don't tell my doctor.
Now growing up and until my diagnosis I was not a person that got sick very often. I wasn't a strep kid, an ear infection kid or an allergy person. I got the common cold and an occasional stomach bug but that was it. I was and still am clumsy, with more than my share of broken bones, but I was rarely sick. Even when I was sick it was downplayed because my mom was a nurse and she saw way worse things in the ER or hospital everyday. So before being diagnosed with cancer I rarely got sick and if I did get sick, I didn't usually do much about it but let it pass in due course.
So now here I am having to pay extra special attention to everything going on with my body and train myself that telling the doctor doesn't make me a hypochondriac. Neither is easy for me. One thing that is tricky is that something that is a side effect at one point may be a symptom at another point. For example, fatigue is a very common side effect so in some ways you get used to it and you think - my body is working hard to fight this cancer so its ok that I am tired. However, when my lungs started filling up with fluid, I was also tired so now fatigue had become a symptom.
When I lost my voice. it first went into the category of standard illness but when it didn't improve it moved into the possible symptom category. Even though I thought maybe it was a symptom I would try and talk myself out of it -- like how can breast cancer in my lungs cause me to lose my voice. Then I finally decide to tell the doctor and off we go to figure out what is going on.
I have used Dr Google more times than I probably should, researching weird things that are happening to me.
Freezing cold toes (not feet) when going to bed -- convinced I am having circulation issues - stopped before I told the doctor.
Randomly losing hair in large spots when there has been no change in treatment - tell doctor decide it might be to stress, resolves itself before I see the dermatologist.
Hyperpigmentation under my eyes - doctor refers me to dermatologist - get a cream that fixes it and we put that one in the Sign of Aging category.
Lower Back pain -- chalk it up to aging until I feel like I might pass out - go to the ER turns out to be kidney stones.
Terrible pain behind my knees when I go to bed - sign of aging and picking up tennis at age 47.
The one thing that has happened that made me create the "I am going crazy" category is extreme itching episodes. I have drawn blood on my hands and my feet, have been up in the middle of the night looking for something coarse enough to give me relief. It would happen in the shower, and I would itch my arms and back to the point that they turned bright red. It would start while on a conference all and I would have to put the call on hold while I went to find my itch cream. I tried to keep track of what was causing it - food, soap, detergent, temperature, stress. Nothing ever lined up and then it just went away so what other category could it go it but crazy town.
The other thing that I never could decide if I answered right was every time I saw my oncologist in North Dakota he would ask me if I had any headaches or double vision. So.. of course I have headaches - sometimes every day. While I said before I was not a sick kid, I have always had headaches. So, I would answer - no more headaches than normal. Now double vision, I don't think I have ever had double vision, but it can take several minutes for my eyes to fully focus on my laptop each morning. Does that count? I don't want to downplay something that could mean there has spread to the brain, but I also don't want to exaggerate anything. I always just said, no double vision.
Training myself to tell my doctor when something is off, is and will continue to be, a work in progress. My training started less than a week after my first treatment in 2012. Everyone in the house was sick with either the flu or bronchitis besides me but then I got a fever. My initial instinct, take some Tylenol, go to sleep, the fever will break. It didn't. Ramsey said - you need to call the doctor - I said no, it's Christmas Eve I don't want to bother her. I lost that argument and called the on-call service. My doctor called me back in 5 minutes and already had called in a prescription to the pharmacy. I have learned not to mess with fevers -- after my double mastectomy I got a fever and we found out I had an infection.
But fevers are the easy ones. Fever = call the doctor. Can't breathe = call the doctor. Bleeding at incision site = call the doctor. Small amount of swelling in the left ankle...hmm. Diarrhea ...how much is too much. Constipation...how long is too long. Food tastes weird and you go from starving to full after two bites....weirdo. Thankfully, I do have my family can close friends that push me to call or at least email my doctor when I struggle with whether I am overreacting or not.
So, if I ever ask any of you if you are experiencing some sort of medical phenomenon just know that I am most likely trying to move something out of the crazy category to something else or I am trying to justify in my head whether or not to call the doctor. Its ok if you tell me I am crazy, I won't take it personally.
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