I don't know about you, but I'm much calmer and in control when I have all the information I need. The unknown seems to be the worst, and it's what wakes me up, heart pounding, in the middle of the night. You see, in 72 hours I start a 6-week course of daily radiation therapy and weekly chemo. And as the always healthy, never-more-than-a-bad-cold person-who-hates-a-situation-without-a-plan, I'm still lacking the most vital information - "How will I respond physically to this treatment?"
I've had the textbook course, learning about the possible ugly side effects, the list of things I can do to mitigate the extreme nausea and fatigue and that I need to ask for help when I feel I need it. But until I actually start, I'm not going to know exactly what is going to happen. This is understandable, given that every person responds to treatment very differently.
Yet in many health care situations, people still don't get the information they need. My father-in-law passed away recently from end-stage colon cancer, and during his time in the hospital, nurses, physicians and techs often came into and out of the room without ever explaining what they were up to. In fact, in many cases they would completely ignore the family members sitting there. For my husband, this was extremely frustrating.
I have to say that my experience in this regard has been very different. During my hospital stay after surgery, ever single person who entered my room introduced themselves, explained what they were there to do, and before leaving asked me - or my husband and sons - if we had any questions. In each doctor's appointment - and there have been dozens now - my physicians, or their nurses and nurse practitioners, have taken all the time I need to listen to my questions, discuss treatment options, and explain fully what's happening to me. Friends, THIS should be the way it works all the time. It isn't that hard!
My advice is to take the time while you are healthy to make sure you are with the right physician. How are you greeted when you show up for an appointment? Do you feel rushed during your time with the doctor? Are you left with questions, or do you feel talked down to? You can now find lots of information on rating boards about physicians - and even hospitals, thanks to the power of social media. Invest the same amount of (or more!) time in choosing the person who will be managing your care as you would picking out a new television set, car or any other large purchase. At the end of the day, while it may seem obvious, there really is nothing more important than your health or the care you receive when trying to return to health.
Saturday, December 31, 2011
Friday, December 30, 2011
Know Your Body
The moment I was told I had cancer, it was as if suddenly I could feel every twinge, every pain - the division of each cell. And yet, what my doctors told me they were looking for made no sense to me. In my heart and my gut, I knew that the prognosis was not as bad as they feared.
I was able to find solace during this very stressful diagnosis time through a physician friend, who affirmed that yes, the dire prospects being explored were quite improbable. "But Amy," he cautioned, "I can tell you this as your friend. You want your doctor looking at this from every single angle to make the most accurate diagnosis." And he was right. I am immensely grateful for the incredible physicians whose care I have been in.
After multiple tests and procedures, I was diagnosed with Stage IBI Cervical Cancer, though the pathology of the tumor was incredibly rare - hence my physicians' very diligent efforts to rule out stomach, colon, liver, pancreatic, gall bladder and esphogeal cancers. After a radical hysterectomy, I am still facing courses of radiation and chemo to be certain all of the cancer cells are gone.
Before the diagnosis, I had no symptoms. But as I look back, I wonder if I was too busy to really pay attention to what was going on. The moment I was tuned into the presence of Cancer, I became much more focused on listening to what my body was telling me. If you are still enough and quiet enough often enough, you will know when something isnt' right. Or maybe you will, like me, be able know what's happening with an eerie certainty even when the doctors are still working to make sure they do too.
I was able to find solace during this very stressful diagnosis time through a physician friend, who affirmed that yes, the dire prospects being explored were quite improbable. "But Amy," he cautioned, "I can tell you this as your friend. You want your doctor looking at this from every single angle to make the most accurate diagnosis." And he was right. I am immensely grateful for the incredible physicians whose care I have been in.
After multiple tests and procedures, I was diagnosed with Stage IBI Cervical Cancer, though the pathology of the tumor was incredibly rare - hence my physicians' very diligent efforts to rule out stomach, colon, liver, pancreatic, gall bladder and esphogeal cancers. After a radical hysterectomy, I am still facing courses of radiation and chemo to be certain all of the cancer cells are gone.
Before the diagnosis, I had no symptoms. But as I look back, I wonder if I was too busy to really pay attention to what was going on. The moment I was tuned into the presence of Cancer, I became much more focused on listening to what my body was telling me. If you are still enough and quiet enough often enough, you will know when something isnt' right. Or maybe you will, like me, be able know what's happening with an eerie certainty even when the doctors are still working to make sure they do too.
2012 - The Year of the Patient
I've been healthy all of my life. Oh sure, the typical things....wisdom teeth out, a little lasik eye surgery, and the natural birth of two wonderful boys. But that's it. Until now.
Imagine my shock when during my annual physical the results of my pap test came back not just abnormal, but CANCER abnormal. I got the call from my doctor on Halloween, just as I was about to board a plane. It felt like I was playing a scene in a movie, and in some respects it still does.
Throughout November, during a flurry of tests and procedures to determine exactly what I was facing, I began to understand the health care system from the REAL inside. You see, I've spent virtually my entire career working in health care. I know the good, the bad and the ugly. And while I always prided myself on having a "patient perspective," now I've got the real thing, first hand.
It is my hope that through this blog I can do a couple of things. First, chronicle my journey as therapy and to speed my journey to 100 percent recovery. Second, to give voice to the patient, who in this country still very much lacks the information, tools and control they so deserve to make the right choices for themselves and their families. And finally, to challenge to every reader to take control. Take control of your health, your body, your choices and your decisions. There's really nothing more important.
Imagine my shock when during my annual physical the results of my pap test came back not just abnormal, but CANCER abnormal. I got the call from my doctor on Halloween, just as I was about to board a plane. It felt like I was playing a scene in a movie, and in some respects it still does.
Throughout November, during a flurry of tests and procedures to determine exactly what I was facing, I began to understand the health care system from the REAL inside. You see, I've spent virtually my entire career working in health care. I know the good, the bad and the ugly. And while I always prided myself on having a "patient perspective," now I've got the real thing, first hand.
It is my hope that through this blog I can do a couple of things. First, chronicle my journey as therapy and to speed my journey to 100 percent recovery. Second, to give voice to the patient, who in this country still very much lacks the information, tools and control they so deserve to make the right choices for themselves and their families. And finally, to challenge to every reader to take control. Take control of your health, your body, your choices and your decisions. There's really nothing more important.
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