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cancer scare

patient portal, cancer, misdiagnosed, tech glitch

Does your doctor use a patient portal? Sounds great, right? I’m tech savvy. I hate waiting for people to “get back to me”. I am all about the technological advancements and if I can get my results instantly online, why wait? Right?

Well, up until last week, I would have whole-heartedly agreed with you. I am impatient. I don’t like waiting on results. It stresses me the eff out. Like seriously, sends my blood pressure up and occupies my every waking moment. I fixate. The unknown scares the hell out of me.

The known, I can do something about. I can formulate a plan, make a checklist, do what I’m supposed to do to check things off the checklist and unlock the next level. That is how I work. You give me a challenge; I find the solution. I don’t like unfinished things. I need to see, pursue and conquer. It’s how I’m wired.

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It’s been a busy month, with lots of surprises and not all surprises that I wanted. Last Monday, my world came crashing down around my feet. I got that news the good old fashioned way, face-to-face. Thank God because I needed to see my doctor’s face when she reassured me “everything was reversible.” Whew. Terrifying but fixable.

I’m used to things not going perfectly but when I was told that my health was failing, well, it shook me to my very core. Like reevaluate your entire life, wade through the murky facts that you could die and then pull yourself up by your bootstraps and fix it. I won’t lie, the first three days of last week after getting the news, were hard for me.

There were meds and a complete lifestyle change. My life felt in upheaval; complete chaos and it left me depressed. I’ve not done depressed many times in my life. Honestly, I’m mostly manic but when life throws you these kinds of curveballs it’s too much and all you can do is feel your feelings, accept your new reality, grieve and move on. That’s what I’ve been doing.

READ ALSO: When Cancer’s on the Table

The thing is it scared me straight. Maybe it’s a blessing in disguise but last Monday, my life was shattered into 1 million pieces and I had to look mortality straight in the face. My mind said, “Not today Satan…not today.” But after all was said and done, I changed because I had to. To live, I have to suck it all up and move forward on a new path. Eat right. Portion control. Exercise. Make better choices. Take meds. Repeat. This is my new reality.

It’s not easy but it’s the way it has to be. So, I wallowed in self-pity and carb withdrawal headaches for most of last week. But, this past Monday, when I went to the doctor she told me that I lost 9 lbs., my blood pressure is in the normal range and my sugar levels have come down considerably…almost to normal from 200. All great news. My doctor is very proud of me and I’m pretty proud of myself too. We all know my relationship with food has never been right.

However, TUESDAY was another story. I am still adjusting to meds and feeling a little weird. There have been daily calls into the doctor’s office. I’m sure the nurses have my picture on a bulletin board and I am labeled “frequent caller or send directly to voicemail.” On Monday, my doctor gently urged me to sign up for the new patient portal. Which I’ve always belonged to because of the aforementioned control freak who doesn’t like to wait for people to call her back with results.

READ ALSO: How a Simple Doctor’s Visit Might Save My Life

Monday night, I completed the registration for the new patient portal and logged in at bedtime. As I was reading through my chart and diagnoses, I saw one that I didn’t recognize. Sure I had a lot on my mind when she was telling me I had diabetes and high blood pressure but I heard everything…or did I?

Because right there in my patient portal was a diagnosis for what, when googled, was bone marrow cancer!!! Yes, you read that right. My chart said I have bone marrow cancer but either I went temporarily deaf or my doctor forgot to tell me. Everyone was sleeping. I was hyperventilating. I.Have.Bone.Marrow. Cancer. It kept repeating on a loop in my brain.

I made myself go to sleep. There was nothing else I could do but….think. I woke up at 2 a.m. and I emailed my doctor through the patient portal. I asked her, “Do I have cancer? You told me everything I had was reversible.” Then my mind ran through all of the scenarios and for a brief few minutes, I thought to myself….I can reverse high blood pressure and diabetes but bone marrow cancer? It’s too much. I’m broken.

READ ALSO: When Mental Health is Marginalized

But then, I  thought to myself, “ Wait an effing minute. You can’t just give up YOU.HAVE.THE BIG GUY AND THE GIRLS TO THINK ABOUT. Immediately, I rationalized with myself that if I had bone marrow cancer, I’d have to find a way to beat that too. I heard my mom’s voice, “Where there’s a will, there is always a way.” I finally fell back to sleep.

Of course, I had to drive for a field trip for the 8th-grade graduation mass at the Cathedral. I guess there’s no better place to be than mass praying while you’re having the worst morning of your life, take 2 in as many weeks.

I asked the Big Guy, my husband not God, “She’d have told me if I had cancer, right? She’d have to, right?” He assured she would have but his face looked like he wasn’t sure. This poor guy. My warranty has run out and I’m falling apart just 20 years into this marriage thing.

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I didn’t want to freak out the girls so I didn’t say anything. I just went on like normal while I was casually freaking out on the inside. I couldn’t take it anymore and while I was waiting for a carload of 8th graders to get in my car, I called the doctor’s office over and over until I got a human being.

Finally, my nurse answered the phone. I told her what I saw and asked, “She’d have told me if I had bone marrow cancer, right? She’d have to, right? That would be unethical to send me on my way without making a plan and starting treatment. For the love of God, I WANT TO LIVE. HELP ME!!”

My nurse said, “Debi let me check your file and yes, she would most definitely have said something to you if you had cancer.” I was frantic. The kids were walking towards the car but I couldn’t end this call until I knew one way or the other.

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“Debi there is nothing in your chart or the notes about you having cancer of the bone marrow or otherwise. I am so sorry that you were so scared. If there was something wrong, she would have told you and it would definitely be in the chart. It gave me a random diagnosis before too. It just inserts weird stuff sometimes.” And with that, I had a mini psychotic breakdown because for 12 hours I had bone marrow cancer. I don’t find the patient portal’s behavior to be acceptable.

I’ve never prayed so hard or sung so loud in mass before. Talk about a grateful life. Every day is a gift. Every minute and moment sent on this earth is precious. That was my week. It’s been a crazy one. I’ll tell you one thing, I may never look at that patient portal for as long as I live because it almost killed me.

 

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