We thought it might be nice to come up with a way to update everyone at once about what is going on with my breast cancer diagnosis. Those of you who know us well, know that we are private people. We don't have a Facebook page, we don't Twitter and we don't even own smart phones. This will be a challenge for us to share all of this information for everyone to see. However, I believe because of my unusual circumstances, it may be important for someone who is facing the same obstacles. So first, a little background on my past health issues and then an update on my current breast cancer fight.
Many of you already know that when I was 18 (1981), I was diagnosed with rheumatoid arthritis. When I was younger, rheumie decided to attack my eyes in the form of iritis. At the time, the eye doctor asked me if I had rheumatoid arthritis and I looked at him like he was crazy. Little did I know, that six months later I'd be sitting in a rheumatology office, with an extremely inflamed knee, and a needle sticking in it.
And so began my life with an autoimmune disease. For many years it only seemed to affect my knees. I would go in periodically to get them drained and go on with my life. Slowly it started to affect my other joints - ankles, toes. Well the years went on and like most rheumie patients, it started to progress. I did all the usual meds, anti inflammatories, steroids and every other medication known to man. My system did not tolerate the meds very well and typically I had to stop taking whatever I was on.
Fast forward to 2002. There was a clinical trial that my doctor told me about. It was a medication called Enbrel. At the time, my disease had progressed to the point where I was anemic and on a heart medication to control palpitations. It was a tough choice for me to go on that medication. I had so many bad reactions to medications in the past. My gut told me not to do it, unfortunately, I didn't listen to that inner voice. I wanted to improve my rheumatoid arthritis, so I reluctantly agreed. Bud and I got lessons on how to give myself injections in the stomach. I can't remember how long I was on Enbrel. I do know that it started to make me feel so much better. My symptoms improved and at times I was able to bike, walk and do things I hadn't been able to do in a long time. I continued to improve - until the summer of 2003.
Bud and I bought our home in 2002. The neighborhood was having a group BBQ and we decided to go. I ate a hamburger that wasn't quite cooked all the way through. Days later, I started to have problems with my bowels which persisted for many weeks, causing a severe hemorrhoid flare up. It was so bad I couldn't sit and eventually ended up at the doctor's office. I was pretty desperate to get rid of the extreme pain I was feeling and decided to let them inject the hemorrhoid. BIG MISTAKE!! From that injection, I developed necrotizing fasciitis (flesh eating bacteria). And so began mine and my families decent into despair. After three debridement's, a colostomy, reconstruction flap surgery, two severe wound infections that had to be packed for a year, a colostomy reversal, home nursing and Bud having to take a year off from work to care for me, we tried to move forward with our lives. It was definitely a challenging time, but what doesn't kill us makes us stronger, right? I thank God everyday for bringing Bud into my life. With his strength and determination and my children and my family, we came back stronger than ever. I still had rheumie to deal with, but we moved forward. It took me a long time to realize that every cut, sore and pin prick was not going to turn into necrotizing fasciitis. It was definitely a process.
Throughout the years I still struggled with rheumatoid arthritis. Rheumie decided to move up and away from my lower extremities and into my upper body. It decided my neck, wrists and fingers would be its new hostage. I've lost a lot of mobility in my neck, and my wrist bones have moved closer to the middle of my hand, but life moved on and I learned to deal with it, taking a minimal amount of those awful meds. I was always very cautious after the necrotizing fasciitis about taking medication. I wanted to preserve my heart, kidneys and vital organs for as long as possible. So if a doctor prescribed four of something a day, I took it once a day. I found a good balance of diet and rest, and I exercised when I wasn't having a flare up. Life had gotten back to my new normal and everything was going well.
In 2011 I had a mammogram and a tiny little spot showed up. They wanted me to do a core needle biopsy. Because of my past experience with needles, I declined. I decided to just keep an eye on it. In 2012 I got another mammogram and the report came back as stable, nothing had changed. In the meantime, I was always diligent with my self- breast exams. This May of 2013, I was doing my usual self exam and I noticed a lump in the same breast, but on the other side from where they saw the spot. I thought it may have been from hormonal changes. I waited a few weeks hoping that it would go away, but nothing changed. So, off to the doctor I went. At the time, I thought I was feeling two lumps, but quickly put that notion out of my head. I have a tendency to think it's worse than it is, not sure why :). Well, my primary doctor thought she felt two lumps as well and sent me off with a referral to have the usual mammogram. Well guess what? Nothing showed up on the mammogram. In fact, I got a letter stating that no breast cancer was found. They recommended an ultrasound. The ultrasound showed two lesions. Left breast at 5 o'clock/3 1.5 cm and another one at 5 o'clock/5 1.4 cm. I was totally convinced they were cysts. In 1999 I had a lumpectomy on the same breast and it was just a cyst. The letter came back from the ultrasound, no evidence of cancer. Whew!! That's good news, I'm in the clear, right? Next referral was to a breast surgeon. What's the first thing she wanted to do? You guessed it, she wanted to stick a needle in it. Well of course I did all kinds of research ahead of time of how a fine needle aspiration could cause cells to move and spread the cancer. And we all know by now how I feel about needles, and how paranoid I've become about "procedures". However, she was persistent, and I reluctantly agreed. The results of the FNA showed atypical cells. Back to the internet frantically searching for "atypical cells". At that time I decided that maybe it was just inflammation caused from my rheumatoid arthritis. That's a positive way to look at it, don't ya think? NOT. Next course of action - you guessed it - core needle biopsy. NO WAY! Back to the internet - maybe a holistic approach? Change my diet, exercise or whatever else I can do not to have a core needle biopsy. After much agonizing and many phone calls to my past and present doctors, I decided to have the biopsy. I would like to say that it was a pleasant experience, but I knew it wouldn't be considering the pain I was feeling in my breast. The lumps were so sore from the last biopsy. I read that typically if it's cancer it doesn't hurt. Boy was I in for a rude awakening. After much agonizing with my surgeon holding my hand, begging me to continue on with the biopsy, they were able to get two cores out of one lump and four out of the other. I won't get into how I was told over the phone. I can only say that the medical profession should really work on their bedside manner. To make a long story short, I was diagnosed with Infiltrating Ductal Carcinoma. Now here's the kicker - there are two different kinds of cancer. WHAT??? Not only two kinds, but both kinds are fairly aggressive!! One lesion is her2+ and the other is triple negative. Does that happen? So far, the doctors I've seen have not seen it. Can this really be happening? Poor Bud - that man is like a rock. I feel so badly for my kids and my family, having to put them all through another medical crisis!
So starts a new challenge. When I was sick with flesh eating bacteria, there was really no time to make any decisions. Everything happened so fast and most of the decisions were made on an emergency basis. I had no idea how overwhelming all of the decisions a breast cancer diagnosis would bring. What kind of surgery? What kind of chemo? Radiation and lumpectomy or mastectomy? What kind of reconstruction? It's all so mind boggling. Bud and I are navigating our way through all of the choices. We did get a second opinion outside of our medical group with a renowned cancer Oncologist. He is a wonderful doctor in Orange County, who had also never seen her2 and triple negative in the same breast. There is so much to learn about breast cancer. Originally I thought breast cancer was all the same. I'm finding out that's not the case. We think we have a game plan. It seems to change daily as we get more answers. At this point I think we've decided to have chemotherapy first before surgery. My OC doctor seems to think we can shrink the tumors and possibly have no lymph node involvement before I do my surgery. I am really against them taking my lymph nodes. We need those nodes! I really don't want to suffer from lymphodema on top of everything else. I am not a candidate for typical breast reconstruction because of my wound healing problems. The Oncologist is worried that if I have surgery first, I will have problems healing which would delay chemo. Therefore, the plan is to shrink the tumors and have a lumpectomy. Hopefully this will alleviate the need to have a more invasive surgery (mastectomy). I'm told if I have a lumpectomy, I will need radiation. I'm terrified about starting chemo for obvious reasons. As shown in the past, my body doesn't do well with immunosuppressant drugs.
I'm not sure why things happen in our life beyond our control. From what I'm told, this is an unusual case. Maybe there's a way to help other people navigate through the same diagnosis? Maybe I'm being guided to breast cancer as my cause. That is why I've decided to share this process. Hopefully it can help others in my same situation.
There are so many people I'm thankful for already, during the start of this process. My friend, Tricia has been so supportive, giving me tips on how to stay healthy during chemo. My Aunt Jayne put me in touch with her friend Karen ,who is a retired Oncology Nurse. She spent time with me on the phone and was a wonderful source of information. My sister Ann, who let me babble on and on about my diagnosis when she was facing challenges of her own. My cousins, Don, Annie and Lisa, helping me fill in the blanks of who did or didn't have cancer in our family. My niece, Melissa who brightens my day by visiting with her two beautiful boys. My brother, George - I may not get to see him often, but he has always been there for any crisis in my life. I know I can depend on him when it counts. Jeanne, my niece, has been making me healthy salads and food and has been wonderful. She truly is a kind hearted person and she cares so much. My nephew, Jason has been a calming voice of reason with all of the choices put before us. He has a way of cutting through the BS. He is an amazing person and holds a special place in my heart. My sister Peg, always by my side through everything. We have been through so much together. I had the hardest time telling her about my diagnosis. She has been more like a mom than a sister. She has gone through so much these past few years - I feel badly I had to add to her burden. My son Mike, was with me during my cancer diagnosis. I know that was a difficult day, but he handled it with strength and compassion. He helps me with chores, takes walks with me during the day and lifts my spirits on a daily basis. I feel fortunate to have him home with me, and I'm proud to call him my son. My daughter, Robyn has been so wonderful through all of this. So patient as the plan changes daily. I know this has been hard on her being so far away. She calls me every day to give me encouragement and listens to my fears. She helped take care of me when I was sick with flesh eating bacteria, and she's offered to come home and take care of me during chemo. There is no one quite like Robyn. I'm always so amused by her quirkiness, and I really enjoy her sense of humor. I couldn't ask for a better daughter. Then we come to Budly. His strength and his positive attitude amaze me. I'm not sure what I did in this lifetime to deserve such a man. He has been by my side through my most challenging years. Always encouraging me and never letting me give up on life. He doesn't accept anything other than a fight. I wish I had the opportunity to thank his parents for bringing him into this world. Unfortunately, I never got the chance to meet them. He accepts me for who I am, flaws and all. He will forever be my best friend. Not everyone gets to find their soul mate in life, I'm so fortunate to have found mine.
I can share what I've learned so far, early in this medical process. Only you know your own body. It's important to be your own advocate. If a doctor won't listen to you, find another one. It's important to connect with the doctors that will save your life. Follow your gut instincts. If something doesn't seem right, don't be afraid to ask questions. You are an individual. Standard of care is not always the best option for your situation. Make sure the doctor looks at your case as a whole, taking into account your whole history.
I've come to the conclusion that these challenges have to make us stronger. There has got to be a lesson in all of this. I am so fortunate to have such a great support system. I think about women and men who go through illness with no family or friends around them. How difficult it must be. I know I owe it to my husband, my children, my family and friends to do whatever I can to fight this cancer. So for now, it looks like it's off to battle we go! I survived flesh eating bacteria, and as scary as it is, I will fight to survive breast cancer with you all by my side. Hopefully we will kick its butt!! Stay tuned :)
(Please excuse any spelling or grammar errors)