rgc77's Story

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rgc

"My journey with breast cancer started in the late spring of 2014. I was just going to bed late one night, when I happened to run my fingers across my right breast. There was a hard lump just under the surface where there hadn't been one before. That brought me up short and I asked my husband if he could feel it. He could. I estimated it to be about the size of a fresh soy bean. We decided that I would keep an eye on it and mention it when I went in for my women's health check-up at the end of June, just before my 37th birthday. I was really putting it off because I didn't want to find out something was wrong. The doctor's office put off my appointment until after July 4th, so it was probably nearly two months from the time of discovery until I mentioned it while being generally poked and prodded. The nurse practitioner took me very seriously and sent me for a mammogram. It was the first time I ever had one. I explained why I was having the mammogram and they put a marker on it so they could find the spot. Even though I could feel it on the surface, they never would have spotted it if I hadn't told them where it was. Since I had to travel a long distance to a hospital that would take my insurance, they got the radiologist to look at the images while I was still there. That led to an ultrasound before I left that day. A week later I was back for a biopsy. From that time on, I had a pretty good idea what the diagnosis would be, as this 1 cm tumor began to act up and cause a lot of pain.

"I think my doctor didn't quite know what to do with me. Most of his patients have cholesterol, diabetes or digestive problems. I'd been seeing him for undefinable rheumatoid arthritis-like symptoms for two years. He should have recommended that someone come in to his office with me. Where we live, they never give us bad news over the phone. Maybe it's because they have a lot of Amish patients who don't have phones. Anyway, I went to find out my biopsy results (they made me wait a week!) and they called me in and put me in a treatment room right away. Then I had to wait 40 minutes alone for the doctor to actually come in and talk to me. It was strange, but I knew from the way all the office staff and nurses treated me that day. My poor doctor. He didn't want to be the one to tell me, but he gave it to me straight. He apparently assumed that all I would need was a lumpectomy. This was a Thursday, and he got me an appointment with a surgeon the following Tuesday. He didn't explain anything about the road I had just embarked on, but that may be because he really didn't have any idea. Curious, that, when his wife is an oncologist -- my oncologist!!

"It was my surgeon who answered all my questions before I asked them, went out of his way to provide me with as much useful information as possible so I could make informed decisions, and actually got me an appointment with my first oncologist. I've seen three now, but they are all in the same office. They work out of Fort Wayne, Indiana and come out to small rural clinics. I did the rounds of MRIs, more biopsies, another mammogram. The hidden catalyst for all of this was in my family history, some of which I was too young to have known about. My aunt and two of my cousins have had breast cancer and are all still living. The most recent one got tested and found out she was BRCA1 positive, so it was decided I should be tested. I also am BRCA1 positive. That, coupled with the fact that my biopsy indicated the cancer was triple negative, helped me make up my mind that I wanted a bilateral mastectomy. I surprised my surgeon when I declared I didn't want reconstruction. On September 5, 2014, I went into surgery as a dear friend was laid to rest, having lost a nine year battle with breast cancer. She seemed to radiate sunshine. I try to do the same.

"A month later I got my port and started chemo a week after that. Four doses of AC and then 12 of Taxol. I'll say it now. I love my chemo nurses. They are a wonderful group of women. My first one had been a cancer patient as a child, so wanted to be one when she grew up. The one I see when I go to see the oncologist has been at it for 30+ years and is absolute sunshine. I didn't have a lot of trouble with any of the chemo. Sure, I lost my hair, and I practically shut down my business for 6 months, but I know that I got away with it easy. When it was all over, I had my ovaries removed. Everything had shut down and I didn't see the point in more hot flashes than necessary. It was rather strange to age that much biologically in so short a time. I love being off the hormone roller coaster, though.

"This autumn, I and my fabulous health care team quietly celebrated the fact that I had come through two years with no apparent signs of recurrence. I saw my oncologist on the 5th of October (my younger son's 13th birthday) and everything seemed fine. Then, on the 6th of November, while driving I was massaging below my right collarbone because the area was sore. There it was, a lump about 1 cm long that was easily distinguished. It hadn't been there before. My heart dropped. If I had been alone in the car I would have cried. I nearly did anyway.

"When I had the biopsy, I knew for sure the cancer was back, or rather had never actually left. I also knew that it had probably spread far and wide. This was shortly confirmed by the results and the PET/CT scan that followed. December 7, two days after my older son's 17th birthday, my oncologist told us (I took my dearly beloved with me) that the cancer had metastasized to my right lung, along with a number of lymph nodes and possibly one of my ribs. So far, my liver is clear. What a strange day and a weird feeling, when your chemo nurse cries when she hugs you. It isn't really very encouraging.

"This all seems so unreal. I'm not in shock anymore, although I certainly was for about 2 weeks. Our family has made some decisions that will drastically impact our future, but they had to be made. My husband and I have had our own business for the past 12 years. We have worked together nearly every day and spent more time in each other's presence than many couples get in a long lifetime together. Now we have decided to mostly close down the business, at least the part that is dependent on me. We already had to do that two years ago for a few months. This time there is no 'normal' to look forward to. I have hand decorated ladies' tops for more than 10 years. During recovery, I gained an enthusiasm for the business I had never really had before. Now, I am closing it down. Tomorrow is the last day my shop will be open. I had new designs and great plans. Now they are laid aside and I am focused on sorting out the remains of a business. I do not want someone else to have to do it some time down the road.

"I mentioned my family. I am married to a wonderful man 23 years my senior. We have two sons aged 13 and 17. I only mentioned the age gap between us because we have always had it in the back of our minds that I might some day be left a widow with young children. We never seriously considered that I might be at risk of going first. The boys were emotionally up and down for a couple of weeks, but have accepted what cannot be changed. At least for now. I have never seen my husband cry for any reason in the 21 years I have known him. It is a truly terrible thing to hold him in the dark and know that he's crying. No one is promised tomorrow, so make the most of this moment.

"It is my intention to be a cheerful person, and I usually am, but there is one thing that really gets to me. Why does everyone have to tell you about their friend who had breast cancer 20 years ago and how well they are doing? Or try to put you in touch with someone who used such and such a product/food/etc. to marvelous effect? I smile at them and thank them for the stories and information. I know they all care about me and want to encourage me (and themselves) that I'll be alright. I'm a very down-to-earth and rather blunt person, so I don't tend to beat around the bush. It makes people uncomfortable when I talk honestly about the situation, but they might as well know the facts. It's up to them whether or not they accept them. That probably seems harsh to some people.

"The one thing I have found really hard to deal with is telling people what has happened. We are a very open family and let our many friends and relatives know the joys and sorrows of our lives. I send out an annual letter every Christmas. There has not been one this year. It will go out in the new year, and it won't end on a happy note. Well, I'll do my best to cheer everyone up. I had to call my parents and my sister to tell them the news. It was a terrible experience that can only be compared to calling up relatives to let them know that you have died, except that you are the one making the call. There is no other thing to compare it to. I remember vividly when my grandfather died when I was six. My mother called all the relatives and had to tell them. I sat around the corner on the stairs and listened when I should have been in bed. That's why I know what it is like. The worst has been talking to my brother on the phone. He is twelve years older than me, has been in prison for 11 years and has another 14 years to go. He also does not have the peace in his heart that I have, so he has a hard time accepting the situation. Maybe needing to be there for all these beloved people keeps me from getting selfish and hardhearted. I hope so.

"Thanks for listening to my story. Hopefully some part of it helps those who read it."

-- rgc77, diagnosed metastatic in December 2016

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