I had 2 specialist appointments last week. First with my cardiologist and second with my nutritionist. These were both first encounters, so I was slightly nervous. Thankfully they both met my high standards.


I finally had a doctor who was willing to engage me at my level of understanding and research, rather than feeling like he needed to glaze over things or just tell me not to worry. He sat with me for 20-30min answering all my questions and thoroughly explaining things but not at all in a patronizing way. For those concerned we came to these conclusions and action items.

  1. The tachycardia I experienced last Monday is multi-factorial including dehydration and chemo effects. It will be monitored and managed, but is unlikely to cause major issues bc I don’t have pre-existing complications.

  2. The EKG ordered by my oncologist NP was all good. Glad to have nothing extra going on there!

  3. I can’t remember if I have addressed that in my genetic testing a genetic mutation that can affect the heart was found. It requires some inquiry, but it is not urgent. He said waiting until post-chemo for the baseline study is totally fine. Mostly bc we do not have a family history of sudden cardiac events, especially at a young age.

  4. He was just as concerned and shocked as I was that the hospital discharged me last month without doing lower extremity ultrasound to verify there isn’t/wasn’t DVT. So I will have that imaging done tomorrow.

  5. I will follow up with him in late September with labs and another DVT ultrasound done prior to our visit. We will evaluate then if I can come off of eliquis. Assuming this one comes back clear.

  6. He explained my concern about my platelets dropping and eliquis. He explained that eliquis is not targeting platelet levels but instead a different factor released from platelets that cause coagulation. So if I do go below the threshold there will be an intervention that should not counteract the goal of the right level of anti-coagulation.

Nutritionist Thankfully she did not come from an anti-fat perspective. I kind of assume most nutritionists in the oncology field wouldn’t have that bias, but I’m also sure that’s probably naive. The news was not great about helping me eat and drink more, but she provided some good insights. What I appreciated most about her was that she works in probabilities, not possibilities. Remember when I was annoyed with my NP for saying, “hopefully your body will adjust to the medication, and you won’t have as many side effects.”? My nutritionist was more based in probability sharing that as chemo continues, I should not expect anything to get better. All of my side effects are likely to stay the same or get worse.

  1. She said, “don’t expect to drink anything cold until post-treatment.” Bye bye Milkshake Day. But maybe there is a possibility ;)

  2. Similarly I should not expect my taste to get better, however I can use tools to make things palatable. “Palatable.” That’s the realm I am in now. The goal is not to enjoy food, it is to make it edible. If it doesn’t taste like poison, I can use salt, honey, lemon, spices, herbs, etc to adjust the flavor to be more palatable.

  3. I’m supposed be drinking 64oz of fluids every day. And she suggested doing 32oz of those before noon. I am not even close to that. I can’t even get to 32oz by bedtime!

  4. Eat several fist-sized meals/day. I’m definitely eating small portions, but I’m not sure 1-3 times/day counts as several. It’s supposed to be more like 4-6.

  5. Along those lines, 2200cal is supposed to be my goal to maximize nutritional needs during treatment and to support healing. I’m not a calorie counter, but I’m pretty sure I’m failing at this metric as well.

  6. She gave me a lot of tips and options to get in those extra calories. So far, I’ve been doing slightly better, but I’m definitely not up to the standards yet. Hopefully I can get there.

  7. I think the hardest part to accept is that the loss of taste can linger beyond treatment for weeks, months, even a year. The loss of taste has been the worst side effect so far. Tingling fingers, tremors, fatigue, hair loss, sensitive to cold touch, all annoying. But the inability to drink cold liquids and to taste food normally has been the most frustrating and depressing. I’ve said before I wasn’t ever really a food lover, more of an eat food that tastes fine. Nothing was blowing my tastebuds away on a regular basis. But damn, I should have been grateful for what I had. I have no idea if this is actually how I would feel, but in my mind I’d rather have a feeding tube or some sort of injected nutrients and calories, than have to deal with eating tasteless room temp to warm food. Same thing with fluids. Nothing I drink quenches my thirst and feels refreshing, so just hook me up to an IV and fill me up 1x/day. I know that my thinking on that is naive, and I’d probably be pretty miserable, but the fantasy exists.

I’m grateful for good healthcare support. And my cardiologist gets my highest of praise. I don’t think I’ve felt that heard and understood coming from a doctor’s office, ever. Knowing my high standards, my doc should feel quite proud ;)