June 7, 2011 started like any other Tuesday. I was on my way to assist with an ESL (English as a Second Language) class at the Davidson, North Carolina YMCA, a volunteer activity that has been near and dear to my heart since I started with the program this winter. I woke up with a headache, but since those have been in my life since my teens, it seemed inconsequential, life goes on. When I got to class, things started changing, visual disturbance was easily put off as a migraine aura. That was the start of an experience that has changed my life forever, and the story I want to share on these pages. A story of shock, a story of fear, and finally a story of hope and gratitude.
I’m a healthy retired woman, 61 years old. My forty year career was in Health Care and I believe that we need to be responsible for making good choices for our health. All of my life I’ve watched what I ate, exercised, lived life with the goal of living to at least 93 like my mother did. I have never smoked. Health has been a basic expectation and I’ve lived like it is important to me. So, what happened?
I was fortunate to have support immediately and the Coordinator of the ESL and dear friend drove me to the local Emergency Room after calling my partner with the request to meet us there. I don’t know of a time that I’ve ever been so fortunate to have support. By the time we arrived I was disoriented, confused and struggling to talk. My last memory is handing my insurance card to the admitting clerk and asking if their neurologist was Board Certified. I thought I was having a stroke.
The next thing I knew I woke up in the ICU at Presbyterian Hospital in Charlotte with my hand held by the man that I’ve come to love and appreciate more every day, my partner of two years, my friend, my lover, Gary. Also in my room was the physician whose task it was to tell me that the MRI and CT scan indicated that I had Stage 4 Lung cancer with a 6 cm primary tumor, two lesions on the occipital lobe of my brain one cm on the left and two cm on the right and others noted in my liver, my bones and my lymph nodes. Had this not been found and treated, he said, the brain lesions would end my life within 3 months. But I was fine that morning and the sun was still up. How could this be?
To say I was frightened doesn’t describe the terror that Gary and I both felt. For the next 5 days there were tests that included what felt like every scan known to modern medicine, the bronchoscope that retrieved the tissue sample for the biopsies to confirm the type of tumor, blood work that was drawn what felt like every hour. The building of a “halo” to serve as a head holding device while they zapped the brain lesions with stereotactic radiation designed to burn out the tumors. I was experiencing the most advanced medicine that could only have been imagined in my days of clinical training in the 1970s, it felt like a miracle.
In addition to the medical side of this initial stage of discovery of this turn my life had taken, we had to tell family and friends the news. This was perhaps the hardest part, since I was always the one who took care of other people, letting them know that I was going to be needing them was not something that came easily for me. And, hardest of all was that my family and friends are almost all in Wisconsin, my home before moving to North Carolina to be with my man just over a year ago. My largest support system was 1,000 miles away and Gary was going to need to be my rock. Lucky for me, he tells me at every opportunity that he is “a good catch” and this experience has shown me just what that means. He made the calls to family, to dearest friends and reported back to the bedside. July 11
Side Effects are the given in Cancer Treatment. These are powerful and often toxic drugs and to think we can avoid some nastiness is naïve. The unknown is that each “chemo cocktail” is different and each patient responds in their own way. The plus here is that treatment dose levels, targeted therapies, and more understanding of methods of administration have made the receipt of chemo much less onerous than it was even a short number of years ago. For example, in my case, new nausea medications are administered in the IV starting before the chemo is attached and I did not experience a moment’s nausea during or after my first chemo treatment. My first week after chemo was almost side-effect free, but I was not totally spared. I lost my taste for wine and coffee. Nothing else. And I liked wine and coffee as part of a ritual to rev up in the morning and wind down on a weekend evening. Now I drink water.
After about a week, other side-effects developed. It was a 2 fold surprise that seemed to suck the water from my GI tract and deposit it in my cheeks. So, now I looked a bit like Alvin the singing Chipmunk and had everything from dry lips to constipation to the dreaded hemorrhoids. So for this one, drink lots of water, eat whole grains and fruit, and if that doesn’t do it, the gentle stool softener Senekote did the trick to get things going, . Try to catch these things early and call your nurse just to make sure that the solution is compatible with whatever meds you are taking. This is what worked for me and I want you to know there is relief out there. You do not have to suffer in silence, but even OTC solutions should be checked out.
Advice: Ask questions, keep a list and write them down whenever you think of one. Some might mean a call to your nurse or your physician. It is your right to have your questions answered and your responsibility to ask them. Your comfort and perhaps even the efficacy of your treatment may rest on your full understanding of your treatment. It is also your responsibility to read the information that is given you and follow directions to the “T.” That will be the biggest predictor of successful treatment and it is why I advocate for good notes and taking someone with you to every appointment, so you can have another person there to hear and document what is said.
Ask the questions and expect the answers. Tell people what you need and want. This is not the time to by shy, it is your life.
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or leave a private email at jodiekacer@aol.com
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