On October 17, 2012, I was honored to give a presentation of my journey through breast cancer at Bowling Green State University, Women's Center in recognition of Breast Cancer Awareness Month.I teamed up with my Oncology Nurse, Jan Tipton of UTMC to bring awareness to Triple Negative Breast Cancer as it is affecting younger women, even those in their 20's, and the need for further research to find a target therapy is critical. I shared my journey from finding my lump to going through my treatments and trying to find my new "normal" afterwards.
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| Melissa and Jan |
- BGSU Women's Center
As requested, I added below my speech but I spoke from memory so there was a couple of minor things I forgot to mention. I also did a slideshow presentation with photos throughout my journey as I told my story.
MY JOURNEY
Sunday, August 2, 2009
Sunday, August 2, 2009
LUMP DISCOVERY My husband had just left that day for Traverse City when that evening I felt a lump on my left breast along the bra band. At first I thought it was just my rib, maybe a little swollen. After comparing it with the right breast, I realized it was different from the left and couldn't believe it was actually a breast lump. I was thinking this just can't be happening and my heart just sunk. I reacted fast and 2 days later I got in for a mammogram. I didn't want to tell my husband for he was on vacation with our son, I knew if I told him, he would worry and come back home. I decided to wait until after I have the mammogram when I know more of what I'm dealing with.
2 days later, I went to Toledo Hospital for my mammogram, haven't had one since my baseline at age 36. I told them that I found a lump and they put a marker on it in that area and took digital images and told me that this was the newest state of the art technology that is more accurate and shows more detail. After the mammogram, they performed an ultrasound of the lump in my breast, I saw a large mass showed that magnified on the monitor. I asked if that was the tumor and she replied, "yes." I asked if the tumor was really that big and she replied that it was a medium size lump measuring 2cm.
The breast care doctor told me the results of my mammogram and said it came back negative. I told him it's there I can feel it. He said there is a lump that showed up on the ultrasound but didn't show up on the mammogram because my breast tissues were too dense. The doc said it's probably nothing to worry about that it was probably just a cyst but, I was very concerned and insisted on a biopsy right then and there. The doc inserted a needle into my breast into the tumor as I watched the needle poking the tumor on the ultrasound screen. After the Doc got the specimen, I asked him what he thought. Doc said, "before the biopsy,
2 days later, I went to Toledo Hospital for my mammogram, haven't had one since my baseline at age 36. I told them that I found a lump and they put a marker on it in that area and took digital images and told me that this was the newest state of the art technology that is more accurate and shows more detail. After the mammogram, they performed an ultrasound of the lump in my breast, I saw a large mass showed that magnified on the monitor. I asked if that was the tumor and she replied, "yes." I asked if the tumor was really that big and she replied that it was a medium size lump measuring 2cm.
The breast care doctor told me the results of my mammogram and said it came back negative. I told him it's there I can feel it. He said there is a lump that showed up on the ultrasound but didn't show up on the mammogram because my breast tissues were too dense. The doc said it's probably nothing to worry about that it was probably just a cyst but, I was very concerned and insisted on a biopsy right then and there. The doc inserted a needle into my breast into the tumor as I watched the needle poking the tumor on the ultrasound screen. After the Doc got the specimen, I asked him what he thought. Doc said, "before the biopsy,
I was 50/50 on it, now that I did the biopsy, I say there's about 25% chance it could be cancer but I really think it's just a cyst for as I was doing the biopsy, the lump changed in shape leading me to believe that it's not solid". The Doc further said, " I don't want to say too much, you'll have to wait for the lab results".
So I went home feeling relieved, thinking I just have a cyst in my breast. I called my husband and told him about the lump and the testings I had done. I assured him not to worry that I'll be ok. My husband did come home the next day.
So I went home feeling relieved, thinking I just have a cyst in my breast. I called my husband and told him about the lump and the testings I had done. I assured him not to worry that I'll be ok. My husband did come home the next day.
Another 2 days go by, I received the call from my family doctor, Dr. Beth saying she has my lab results. She said, 'it is positive". I was just shocked with this news. Dr. Beth said, " We're going to move quickly with this, remove the lump, take a look at your lymph nodes and decide where we need to go from there. All I could say is "ok" and I felt numb. I couldn't talk, couldn't ask questions, I was stunned with disbelief that my worst fear was now reality. First thing I thought, was my son... the possibility of him being without his mommy and how do I tell him that I'm sick? Dr. Beth said she's going to get me in to see a breast care surgeon in the next couple of weeks. Dr. Beth said, "I'm sorry, I hate telling you like this over the phone but I don't want to delay this, we're going to take care of this." Dr. Beth further said, I couldn't believe this myself, you're young and always been so healthy." I hung up the phone, and couldn't believe what I just heard. I'm 41 and I have breast cancer!
I now had to go outside and break the bad news to my husband of 17 years. I told him that Dr. Beth had my lab results and detailed him in on her conversation. The look on his face, he was just devastated. My husband broke down crying and grabbed me, held me in his arms and told me, he's sorry.
I remained calm, I never cried, I wasn't angry but I was really scared, scared of the unknown... Suddenly, nothing else mattered, I have breast cancer! Not going to worry about jobs, money or material things because right now it doesn't matter, I'm going to die!
I couldn't see pass "today"... "How much time do I have? What stage is my breast cancer? Did it spread? Is it in my lymph nodes? Is it treatable? Will I lose my breast? Will I have chemo and radiation? and OMG, am I'm going to lose my hair?..." Questions that weren't answered for 2 weeks until my consultation visit with my breast surgeon. 2 weeks of worry, still not knowing how bad my breast cancer was. Can you imagine all the fear racing through my head and trying to keep myself together. I had to stay focused. I knew I had to be strong, and I knew I was in for a long hard fight ahead of me.
We decided not to tell our son at this time until after we see the surgeon and decide from there on how much to tell him. My mom was shocked and couldn't believe it for she had had lumps removed from her breast twice and they were benign. 2 long weeks later, I met with my surgeon who told me that I have a rare and aggressive form of cancer that doesn't respond to hormone therapy, chemo was my only option. My cancer was Stage2 and, I was given the option to have a lumpectomy or a mastectomy, a very hard decision for me to make. I didn't learn right away that my cancer was triple negative and as I researched and read about it on the internet, the facts were pretty scary.
I immediately took a leave of absence from my jobs for I was constantly on the run with several medical appointments and just trying to keep head together. I had a breast MRI that showed the cancer was isolated to the one area. On my birthday, August 20th, my present to myself was 6½ hours of testing at the hospital for blood work, bone scan and chest x-rays in preparation for my upcoming surgery 6 days later.
SURGERY On the day of surgery at the hospital I had another fun, fun procedure that no one warned me about, Grrr! - Sentinel Lymph Node Biopsy, a NEEDLE injection of blue dye into my areola just below the nipple. OMG, that was the worst pain that I have ever felt, the stinging shot across my chest to my shoulder and down my arm. Thanks for the free piercing but I'd rather have passed!
I did go with the lumpectomy, had 7 lymph nodes from my armpit and chest tissues, no cancer in the nodes! I had an incision under breast, in armpit, and side where the draining tube comes out. I was fairly bruised and swollen on whole left side. I had the post-op draining tube in me for 5½ weeks and had developed an infection in my breast and side with severe pain, fever and chills.
CHEMOTHERAPY The day prior to my first chemo treatment, I had my port surgically inserted in my chest where the chemo will be administered. I remember my Oncologist telling me, "you have an aggressive type of cancer and we're going to fight back aggressively."
I had dose dense chemo treatments (2½ hour sessions) every other week for 16 weeks, with three visits to the hospital for blood work, Chemo, then I go back the following day to get a shot of Neulasta to bring my white blood cell back up. First set of Chemo was an intense cocktail chemotherapy, Adriamycin known as the "Red Devil" and Cytoxan that was very potent but for the most part I did very well - nausea controlled by meds, tingling and numbness in hands, some upset stomach, back pain, lost of appetite and food tasting bland and red blood cell count decreasing. The Chemo had thrown me into early menopause with hot flashes and night sweats.
I had dose dense chemo treatments (2½ hour sessions) every other week for 16 weeks, with three visits to the hospital for blood work, Chemo, then I go back the following day to get a shot of Neulasta to bring my white blood cell back up. First set of Chemo was an intense cocktail chemotherapy, Adriamycin known as the "Red Devil" and Cytoxan that was very potent but for the most part I did very well - nausea controlled by meds, tingling and numbness in hands, some upset stomach, back pain, lost of appetite and food tasting bland and red blood cell count decreasing. The Chemo had thrown me into early menopause with hot flashes and night sweats.
I remember telling my husband about a week after my first Chemo treatment of how wicked it was. I felt like I had a bad hangover 24/7 for 11 days, then on day 14, chemo comes again and knocks me back down for another 11 days. Told my husband that I can't do this, this is awful and that the cancer is going to come back again so what's the point. I had to find that inner strength in me again to just do it, I had to focus on 1 day at a time, just getting through the day.
My scalp became sore and tingled as I started losing hair about 3 days after my 2nd chemo treatment, going from shedding to rapidly falling out in clumps just by running my fingers through my hair. I never wore a wig, just my bandanas and fleece hats to keep my head warm.
The 2nd set of chemo, Taxol was a little easier on me - no nausea but the tradeoff was that it made me extremely tired, my bones in my legs ached all the time and these chemo sessions were now about 6 hours long!
I managed to keep my eyebrows and lashes until my last chemo treatment. I've lost most of my muscle tone, fingernails turned yellowish-orange, I've lost a few toe nails that turned black and peeled off. I developed this clicking noise in my ears. My hair came back in white like "chick feathers" and then turned curly salt and pepper look. I poked fun at myself by posting in my support group a photo of a baby owl with all these white "chick feathers" sticking out of it's head, with me saying that's what I looked like when my hair first started coming back after chemo.
RADIATION I had 33 radiation treatments, 5 days a week for 6½ weeks. I had to get fitted for a mold of my upper body that I had to lay in with my arms pulled back behind my head during radiation treatments. The techs tattooed 5 dots (Woo Hoo, my first tattoo!) on my chest and breast area and with a permanent marker drew lines connecting the dots to be exact as the machine closed in on my chest and zaps my boob 4 times with radiation. Each treatment only took about 10 minutes.
Besides warmth, I didn't feel a thing nor did it hurt but; I had one tanned boob, actually it was burnt crisp. I embarrassed a male intern who wanted to examine me and I said, "Doesn't it look like a dried up baked potato?", He just smirked.
After I completed all my treatments, I had my chemo port surgically removed.
STRENGTH Nearing the end of my treatments I felt lost, life after cancer treatments was a lot harder than when I was going through it. People seem to think that when you're done with treatments and is cancer free that it's done and over, put it behind you, things can go back to normal... Only if it was that easy. I've struggled some... the life I once had, there's no going back to... so many changes that I had to learn to cope with. I lost both of my jobs. I had 2 years of extreme fatigue and feeling constant scatter-brained.
Is there such thing as chemo brain? Absolutely!... I have become very forgetful and it does annoy me at times and can be frustrating ... For instance, the spelling of the word s-a-d wouldn't register in my mind.
Dealing with the stress with all of my follow-up appointments adding to my medical bills debt was very taxing. I turned to a local cancer wellness center for support, trying to figure out my new "normal" and live again. I immediately got involved in their Breast Cancer Support Group where I was surrounded by people who didn't mind talking about cancer, sharing stories and who "get it" The support group has helped me rejuvenate my self-image and ease the transition that I've been going through. All the positive energy that flows through the room during group sessions has such an uplifting effect on my mental attitude. my new normal is living for the moment, LIVE LIFE!
I have met several other TNBC Survivors through an online support group and bonded with several of the women. We talked on the phone and talked of meeting each other before one of us relapse. I met up with Tracy and Kitty and spent the weekend with them in Louisville Kentucky. Tracy had a recurrence and was now terminal. Tracy had asked me when I was gonna come stay with her in North Carolina? I asked her when she want me to come and she said, "now". 4 days later, I was on a plane and stayed 8 days with her helping her out on her ranch and running to doctor appts. with her. I flew back down there a month later for another 11 days with her. Tracy wanted me to come back down to spend time with her over the holidays. I flew back down to NC on the day after Christmas and stayed till after New Year's, Tracy passed 2 weeks later. Another sister I met online from Wooster Ohio, Whitney who was 24 at diagnosis. I don't think the doctors took her cancer serious because of her young age. I spent the day with her during one of her chemo treatments. Whitney passed in June at age 26. I met Jen through her mother who found me online, Jen was diagnosed at 29. I also met up with Rachel, driving to Maryland to stay a week with her.
I am now a 3 year survivor of Triple Negative Breast Cancer and what scares me the most is it's tendency of recurrence. I have become a much stronger woman with determination to deal with what's thrown at me and have compassion and a strong connection with those who are still battling this dreaded disease. I pray that soon there will be a breakthrough in our much needed targeted therapy for triple negative breast cancer and a Cure to rid the world of breast cancer.
To raise awareness and funding for cancer, I've participated in walks for Making Strides against Breast Cancer, Relay for Life and Susan G. Komen Race for the Cure and other events.
I have created a blog documenting my journey with photos too to keep my family and friends informed of my prognosis. After treatments were over, I wanted to turn my blog into a more of an informational and inspirational site for TNBC awareness; posting latest research articles, events I've participated in, stories and memorials on my TNBC pink sisters, and other postings of same interests. I wanted my blog to not just be about me, I wanted it to be about us, us Triple Negative Breast Cancer Sisters. With my blog site, I have reached out to people all over the world reaching many countries in every continent with over 49,000 views to my site. My hope is that my site will help others to have hope, give them the strength to fight and to provide resources to get them the information they need to know about this TNBC subtype.
http://mlsspaskvan.blogspot.com
