One thing that’s fun, is surprising healthcare professionals. “Are you sure you’re the patient?” “What’s you’re diagnosis? What studies/procedures did they do?” “You had bleeding for months? But you don’t look pale. Let’s see your labs, oh, you’re not anemic.” “You have tumors in your liver? But your liver enzymes are normal, that’s good.” “Have you lost weight? Look at those arms! You look so healthy.” Then there’s that surprised sadness where they just look at you, stunned. But then they snap back into doctor/radiology tech/nurse/administrator mode and finish taking my history/X-ray/blood/paperwork, what have you.
I had a similar conversation with the surgeon who would put in my chemo port. He was shocked I had colon and liver cancer, shocked I didn’t have more symptoms, shocked I was so fit, but of course, I obviously lifted weights. When I asked about exercise, which I’ve learned means something different than when normal patients ask. Crossfit puts you on a different scale as far as activity levels go. They always assent, exercise, of course, but they always follow up with walking as suggested exercise. “No, no I’m a weightlifter. I do high intensity rigorous exercise”, I explain. Basically, my surgeon said, no, don’t lift anything heavy for two weeks and don’t sweat until after the wound heals. Great. But he showed me the “port”, a fifty cent piece sized plastic looking thing that can be injected with needles on one side and block needles with a metal backing on the other side. It has a thin tube catheter, that gets inserted into my subclavian vein. It will be inserted under my skin on my chest. I’m not sure how this is going to really work or look practically but at least everything I’m explained makes sense in theory.
Before I leave his office I’m told I’ve been scheduled for surgery the following day and could I please get there at 3:30 pm. “Oh honey, we’re sorry it’s so late you can’t eat all day!! But we’re just able to squeeze you in at the end of his day in the OR,” the sweet receptionist instructs me. The smile fell off my face. “You can do a light breakfast no later than 7 am.” This cancer is going to starve me into a tizzy of frustration. Then I go do pre-op things. More of the sad, shocked stare. (Which I should say doesn’t bother me at all! So if you’ve given me that look or want to it’s fine! I find it amusing [sorry].) I give my history, get more blood drawn, get a chest X-ray, and get an EKG, with lots of waiting in between, all of which took about 3 hours. Everyone was very nice, compassionate and concerned. Then I headed over to my oncologist for my scan results and to talk about Mondays chemo.
I won’t hold you in suspense, my PET scan showed my colon tumor, and my poor liver lit up like crazy, but my lungs and brain and everywhere else was clear. I tapped into the secret doctor network (aka got a text from my Aunt Alice who had called my oncologist earlier) and heard in the waiting room of the surgeons office my PET scan results. What a relief! Again, if I’d had other cancer my chemo regimen would have been the same but it sure makes you feel better about all of it. I sent a million texts just so other people could feel relief too.
In all honesty, after talking to my mom that one night in NYC after the wedding, I stopped worrying about more cancer. I put a wall up in my mind and heart. So I wasn’t that relieved. I was so focused on doing chemo and fighting the cancer I did know about. But it meant a lot to my family and close friends. Sometimes I think it’s easier for me, having cancer. I’m fairly sure it’s been much harder for my family and friends.
My oncologist went over my chemo regimen with me. The results from the genetics of my colon tumor still aren’t back yet. That’s been frustrating. My understanding is that there are two ways a tumor can develop in my colon. One way, is if I’m missing some kind of gene and as a result, abnormal cell growth occurs and wam bam tumor. The other way is a gene gets mutated and abnormal cell growth occurs and wam bam tumor. When it gets tricky is if the tumor is smart. A normal immune system says “Hey! Abnormal cell growth! Kill it!!” and takes out the tumor before it’s even a tumor. But a smart tumor produces proteins that either repel or prevent the immune system from doing its job and it continues along its merry growing way. This is important information when deciding what chemo medications to chose. Because some tumors respond better to immunotherapy that get the tumor to stop producing that protein and allow the immune system to do its job. Other tumors respond to the kill ’em all approach. I forget which is which and which acronym goes with which type but the genetic tests will tell me what kind of tumor it is and which type of chemo will kill it. The good news for me is there’s a lot of overlap and I can always start off with some chemo mess and add or change it the next session.
So at this point the plan is to go with the standard three colon cancer chemo medications and add in another one the next session depending on the dumb genetic tests. The main side effects of my chemo were gone over in detail, mucositis, neutropenia, and neuropathy. Blur your eyes, delicate ones… Mucositis will cause diarrhea, my new favorite pastime, my mouth to feel like I have cold sores, and my nose to bleed. Basically any surface lined with mucosa (nose, mouth, throat… well, digestive tract really) is going to be sensitive and upset. Neutropenia, or a drop in my white blood cells, basically means that my immune system will take a vacation. And neuropathy means I’ll get a tingling in my hands and feet that can develop to weakness if I don’t decrease my chemo dose. So basically monitor the numbness and report back accordingly, don’t drink or touch anything cold, don’t eat or drink anything hot or cold. How annoying.
Next stop starving followed by chemo port placement.