"Beachbum5817" Reaching Milestones in Her Life Once Thought Unobtainable

by GregP_WN

Our WhatNexter of the Week is "Beachbum5817", a breast cancer survivor who has, as of this writing,  passed the five year mark by seven months. She shares her story of finding a lump through surgery, treatments, doubts, pain, lows, and highs, and through to being a five year survivor. This is her story.

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Above: Beachbum5817 and her Daughter celebrating after her last radiation treatment

I had my yearly mammogram in Sept. 2013, and I received a card in the mail saying that everything was good. So, cancer wasn't on my radar at this time. I woke up Saturday morning Nov. 9 and for a reason I do not remember, I rubbed my hand across the top of my left breast. There I felt a lump that I thought was the size of a half dollar.  

I called my PCP, and the earliest appointment that they gave me was for the beginning of the next week. When I saw a PA at the appointment, she felt it and told me I should get an ultrasound. I don't remember how long it took me to get that appointment, but I know there was some confusion. The doctor who did the ultrasound told me that I should see a breast surgeon. He asked if I knew of one, and when I didn't know any in the area, he gave me the name of the one that was at the hospital where my testing was done.  

I called his office when I got home, and the earliest appointment I could get there was for Dec. 3. After going through all the usual questions with a new doctor, he did his own ultrasound and said that I needed to have a biopsy. He scheduled that for Dec.5 and asked if I had any questions. I told him that the only one I had he was not able to answer. He told me that he knew I was worried and that he was worried too. 

When I got to my car, I called my husband and burst into tears. I knew that if the doctor was worried, I was really in trouble. I had the biopsy and all I had been given was one Zanax to take an hour before the procedure. I was pleasantly surprised that it didn't hurt. I had heard horror stories years ago when my sister-in-law had hers, and I was scared. I chatted to the nurse the whole time and it was over before I knew it. I was given an appointment for Dec. 10 to get the results.

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Beachbum5817, her Husband with their Son at his wedding. She didn't think she'd be able to see this happen

I had not told anyone but my husband and my immediate boss at work. I didn't want anyone else worrying about me. On the 10th when my husband and I were seated in a room, the doctor came in and said, "There's no way to sugar coat this, You have cancer." By then, I was not the least bit surprised. He said that I had one of the rarer types. The biopsy said that I was Estrogen negative, Progesterone negative and HER2 positive. 

 Until that time, I had no idea that there were different types of breast cancer, I thought that breast cancer was just breast cancer. The report said that the tumor was 2.5 cm, but that he thought that it was somewhat bigger. He told me that I had choices to make. He said that I could have chemo first than surgery or surgery first and then chemo. He didn't feel that the chemo would shrink the tumor small enough for him to be able to save the left breast. It was up to me if I wanted a double mastectomy or just the left breast removed. He had no reason to believe that any lymph nodes were involved. He gave me the time frame for chemo and explained about Herceptin. 

I was good until I asked him if I would lose my hair. When he said yes, I cried. I know it is superficial and all that other stuff that people say, but to me it was very upsetting. After our meeting, he sent us to the patient navigator's office. She made a lot of calls, and she presented me with testing appointments and appointments with the oncologist and plastic surgeon.that started the next day. 

The first test I had on Dec. 11 was an MRI with contrast. After that it was what I imagine most women have when diagnosed and prior to surgery. I don't know what the last test was called, it may have been a PET scan, but when it was over, the patient navigator was sitting there. I thought, wow that is really nice of her to come check on me. Boy did I receive a shock. The MRI had lit up 4 of my lymph nodes, and since I was at the hospital, they wanted me to have them biopsied immediately.  

I was so upset and confused, because the doctor had thought they were fine. Then I was worried about how could this could be done since I hadn't had anything to relax me. I was terrified, but agreed to it. They used numbing spray, and it really wasn't bad. 

 We met with the breast surgeon the following week and found out that all 4 were positive. I felt so defeated. I decided on a double mastectomy with temporary implants put in at the same time. The surgery was for Jan.2, 2014. The following week, we went to see the surgeon and got not so good news. The tumor was 4 cm. I asked if it had grown that much since the biopsy, and he said he didn't know. They also had found 2 lymph nodes in the breast itself that were positive for cancer. Since the total was now 6 positive lymph nodes, I would need to see a radiologist to see if I should get radiation. 

Knowing that HER2 cancer is aggressive and that it was worse than originally thought, I asked the doctor if there was hope. He told me that he always had hope, and I decided then to follow his lead. I started chemo and Herceptin Jan. 23, the day after my port was put in, for every 3 weeks until May 8. During that time, I had Herceptin on the 2 off weeks as well. 

When I was done chemo, I got Herceptin every 3 weeks until January 22. I ended up agreeing to radiation. I went daily from May 29 until July 10. After my second chemo, my hair started to fall out. I was so afraid that I would wake up one morning during the work week and look hideous, so I had my husband shave my head. I was shocked that I didn't cry. It was not as traumatic as I had thought it would be. I was not interested in having a wig, so I just wore a do-rag in public and wore nothing at home. 

By September, I had enough hair on my head that I ditched the do-rags. It may have been too soon, but I didn't really care. The worst part was that on 2 separate occasions, I was called "sir". After almost 5 years, I can't find words for how awful that was for me.  

I was able to work all through treatments. I went back to work 3 weeks after my surgery, and I only missed work on chemo days. When I was getting just Herceptin, I got the 7 a.m. appointment for the treatment, and I went into work afterwards. I was fortunate to have a very understanding and accommodating boss. I was never sick during treatment. Other than hair loss, the only other temporary side-effects were that my fingernails got all discolored, and my eyes and nose ran constantly. The eyes and nose stopped soon after treatment stopped. The nails took a little longer, but to this day, both pinkie fingers have white spots that don't go away. 

 I take Nature's Bounty Hair, Skin, & Nails daily. I stopped taking it once, because I didn't think it was doing anything. I was wrong. Without it, all of my nails got the white spots again. I now don't miss a dose. The worst side-effect is neuropathy in both of my feet, and it is permanent. It isn't as bad as it was at first, but it is painful. I tried all sorts of different medicines, but the only one that helped a little is Amitriptyline. I also use a medical marijuana cream that offers some relief. I also had lymphedema. It was discovered by the physical therapist that I was seeing to regain motion in my left arm. She was wonderful, and thankfully, I have not had it since. I know that it can come back at anytime, and I have a sleeve and gauntlet to wear on long flights. 

Honestly, the worst part for me was radiation. A few years before being diagnosed, I had rotator cuff surgery. It hindered the range of motion that I could get back. They had to make a form for me, because I couldn't get the arm back all the way. It was very painful for me. I almost quit, but I had to do everything for the sake of my family. 

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Beachbum5817 at her Mom's 97th Birthday Party

 I have great admiration for anyone that has to face all of this on their own. My husband stepped up way more than I ever expected. He cleaned my incisions and dressed them and me. My daughter was the only child living at home, and she was great as well. In fact when I told her I was considering stopping radiation, she left work early to drive me there.  

I think that having cancer has made me not worry about the things that I can't change or at least not as much. I also try to avoid other people's drama. It just isn't worth it. I think a lot of people have forgotten just what I have been through, and that is ok. I don't want to be defined by it. 

Last December, I hit the 5 year mark. I honestly didn't think that I would see that day. It is getting a little easier for me to plan ahead, but not too far. 

 I don't remember how I found WhatNext, but I am so glad that I did. I look forward to my daily email. I have leaned a lot here, and I tell everyone that has or had cancer about it. I am doing well, and I hope that there will come a day when cancer sites aren't needed.

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