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To Oncology Nurses, From a Seasoned Patient

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I don't have a degree in medicine. I have not taken the rigorous classes you have taken. I cannot start an IV, take a pulse, identify a rash, or properly dress a wound. I have my degree in English. That means I can point out grammatical errors on restaurant menus, but measuring medicine into a vial hurts my brain.

I'm not trying to offer medical how-tos. Instead, I'm offering one patient's perspective from the other side of the thermometer, the stethoscope, the hospital gown. So that you understand I have some legitimate experience to back up the advice I'm offering, here's a glimpse at my treatment resume:

I was diagnosed with Stage 4B Hodgkin Lymphoma in 2009 at age 26. Four years later, we now know I have a rare, refractory strain of the disease. I've had more than 30 chemotherapy agents -- several regimens requiring inpatient stays. I've had nurses come to my home to administer chemo. I've participated in several early phase clinical trials that required constant nurse-to-patient correspondence. I've had four surgical biopsies performed and underwent two failed autologous (my own cells) and an allogeneic (from a donor) stem cell transplant that required 25 consecutive days of inpatient isolation and much intimacy with nurses.

Medical teams at Hartford Hospital and Yale New Haven Hospital in Connecticut, MD Anderson Cancer Center in Texas and Memorial Sloan-Kettering and Columbia/New York Presbyterian in New York City have treated me.

Through all this, I've had so many incredible, moving experiences with nurses. I am forever grateful to those medical team members and the selfless and steadfast care they gave that carried me through the ups and downs. I've had few bad encounters, but unfortunately, it's those unpleasant ones that stand out and make you realize your vulnerability as a patient and how much you rely on the intelligence and thoroughness of your nurses.

There were times when I was severely neutropenic (dangerously low immunity) with incessant fevers and teeth-chattering chills. No one would answer the call bell, nor my husband's direct requests in the hallway for Tylenol because it was "shift change" and I wasn't someone's "problem" at the time. This is not okay.

On the other end of the spectrum, I celebrated my 29th birthday in the hospital and my closest nurse came in on her day off to bring me a balloon bouquet. Then, the whole evening shift of nurses brought me a cake, more balloons, and sang to me. The difference in health care is embodied in that personal connection. Rub a patient the wrong way and his or her experience is going to be difficult. Rub them the right way and you can instill so much hope and comfort.

It's the nurses with the thickest of skins that seem to do the best, those that are able to let the tough stuff roll off their backs and after a slaughtering in one patient room, walk into the room of the next patient with a smile and a fresh perspective. I've seen nurses be berated. Nurses have told me horror stories of what they endure on any given shift. There needs to be a mutual person-to-person understanding. For this part of your job especially, I have the greatest respect. No doubt you grow close with patients but also have to remain separate from the joy that they will bring you and the pains that they will cause you in order to protect yourself.

You've chosen a profession where you're helping human beings in their most vulnerable moments. Your hearts are obviously tender and open or you wouldn't be in this field. With that choice comes great responsibility. If you are a printer repair person and you incorrectly install a part, no one can make hard copies for a day. If you double dose a patient's meds or aggravate an infection by not properly sanitizing an instrument, a person is dead. What a humbling and respect-deserving occupation. And what do you get in return? Sometimes only some vomit to clean, a bloody mess to soak up or a cranky, angry berating. What I hope you also get are the compliments you deserve for saving and improving lives every day.

I believe that a lot of the responsibility for good care is on the patient as well. Patients need to be their own advocates and need to pay attention to the care and treatment they are receiving. There is too much room for dangerous error in settings where nurses are taxed for time and endurance.

Keep in mind that the patients know their bodies and case best. Encourage them to talk with you about their symptoms and listen to them. We need to tell you when we're in pain, if we don't understand a procedure, or if we need a blanket, a ginger ale, a fresh pair of those fashionable no-slip hospital socks. Maybe we can't all explain it in the most refined medical terms, but only a patient can know when something doesn't feel right. That natural intuition is a valuable diagnostic tool. I've been fortunate to have doctors and nurses that respect me and allow me to be very involved -- at the helm of my medical care as CEO of Keep Karin Alive, Inc.

When I alert nurses to symptoms, they will take me seriously. Sometimes it takes a little nudging to be heard, but it's up to the patient to keep pushing, and for the nurses to keep listening and following their valuable intuition as well. It may be the doctors calling the shots from afar, but it's the nurses caring for us most intimately. You know us best.

I can't claim to speak for every patient as we all are very individual in our needs and desires for care approaches. Maybe that's the top takeaway: gauge your patients. Do they want to be informed about every detail or would they rather be on a need-to-know basis? Do they like their shots given quickly or pushed slowly? Do they want privacy or companionship? Find that balance and tailor each patient's experience. Proper health care is not one-size-fits all. I'd venture to guess that even if the 80-year-old Spanish-speaking man in the chemo recliner beside me has my same disease, his needs are different. Keep that individualization in care and kindness at the head of everything, and the rest will fall into place.

About a week into my donor transplant hospital isolation stay, my day nurse was in the room when nausea hit real hard and I couldn't hold back a vomit session into the yellow bucket. I looked up at her with exhausted puppy eyes and said: "I really hate puking."

Without skipping a beat, she deadpanned back: "Well IIIII LOOOOVE IT!" as she handed me a warm wet towel to clean up with. I was so shocked by her candid sarcasm that I got over my self-pity pretty quickly and my husband and I laughed with her. She knew just what I needed in that moment. I didn't want to be pitied and coddled and she got that. I wanted her to relate to me. That is what skilled nursing means. Maybe you can hang a perfectly timed bag of red blood cells, but if you can't look me in the eye or ask me about my husband or my dog or my hobbies while you're doing it, then you leave me isolated and scared. Remember I'm a person too, not just a patient.

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