Warning: For those of you wanting to laugh, be inspired, or uplifted, please exit now. It’s not been a good day...or weekend. My phone has chimed for two days. The calls, texts, phone calls which I have avoided are in the dozens now. I just can’t talk to anyone, even those who have walked through my fire and have “grown from the experience”. For some strange reason, especially those phone calls.
Chemo starts Thursday and I’ll admit that I’m a wreck. I’m not talking about just being nervous. I mean night sweats (three changes of clothes in the middle of the night), panic attacks (waking up gasping for air), and uncontrollable shaking and crying for hours and a time. Although I’m dreading the hair loss, that’s just a part of it. I’m terrified of the long term effects this will have on my body. Jeff, always trying to be the positive, supportive one, even gasped when I quoted Dr. Susan Love, author of The Breast Book, touted by the New York Times as the ”bible” for women with breast cancer. Vanity might not get him, but I knew the loss of brain function would do it.
It states that “Six months after stopping chemotherapy, 61% showed a decrease in function compared to their baseline and reported greater difficulty in maintaining their ability to work. The most common problems were paying attention, learning, and speedily processing. At the 18 month follow-up, approximately 50% of the women who had experienced decreases in functions showed improvement whereas 50% remained stable.” It goes on to say, “I doubt that most oncologists warn women who are considering chemotherapy that they may lose a significant part of their brain function. For someone who needs the treatment to survive, it’s worth it, but in cases where chemotherapy offers a miniscule survival improvement, it may not be.”
Of course, a logical person would say, “What were the details of this study? What were the ages of the participants?” The list of questions is endless. But, you see, some people with cancer aren’t always logical. You’re in the fight of your life and you want to know your opponent. Sometimes the rumors about your opponent are just that…rumors, or studies skewed by whoever makes their outcome look favorable. Nevertheless, you want to be prepared.
Although my family was warned on D-day by the radiologist and nurse practitioner, “Don’t get on the internet and start reading people’s stories. Breast cancer varies greatly from patient to patient. You’ll always find someone who has a sister/aunt/cousin/mama that has had breast cancer and they’ll want to share all the gory details...good and bad.” Did I listen? What do YOU think? Just recently, I joined a breast cancer survivor group on Facebook. I realize the need for support groups, whether physical or virtual, however, I’ve never been one to participate in a group. I understand the importance of sharing your story, validation, “venting”, etc., but that’s why I started by blog. However, I started thinking that the FB support group would be a great way for me to be invisible and just sit back and learn…what I have to look forward to.
I had done a little research on Tamoxifen, an estrogen receptor blocker, which I’ve been told by my oncologist, that I should take for ten years once all the other treatment is complete. Ten years is the new protocol. It used to be five years. Here’s a link of the side effects from the Mayo Clinic, for starters. http://www.mayoclinic.com/health/drug-information/DR601293/DSECTION=side-effects I know the rules. I get it. They have to list ALL the possible and adverse side effects. I tried hard not to worry, knowing that:
1. It would help prevent recurrence.
2. Most people don’t experience these symptoms.
Well, from this support group, I had learned that many women were experiencing many of these symptoms! Granted, for all of those women who are commenting, there are surely an army of women who don’t experience such symptoms. But like I said, some cancer patients don’t think logically.
For those of you who don’t know (before June 28, I had NO idea!), there are dozens of different types/combinations of breast cancer. Combine that with all the stages and it’s pretty difficult to find someone with the EXACT same type of breast cancer as yours. Then I saw a post from a woman with the same details/markers/stage, etc. as mine. She endured chemo, radiation, surgery and one year later it came back as stage IV!!! Below it were several comments saying something to the effect of, “It happenened to me too. Hang tough. Be strong. You got this. Blah blah.” Oh. My. God. Some would say (and have said), “Just take this with a grain of salt. You don’t know their diet/lifestyles and whether or not they smoke or have continued to take whatever medications that might have been feeding the tumor (like progesterone and estrogen).” I immediately deleted the group from my Facebook page. Too late. The damage was done. I read it and I couldn’t “unread” it. My weekend was very dark and nothing anyone said consoled me, not even prayer books or hopeful and positive quotes. I just cried most of the weekend.
Meanwhile, I read cards, comments, and e-mails telling me to “stay strong”, “be positive”, and “hang in there”. First of all, saying “STAY strong” implies that I was strong to begin with. I don’t know how I ever earned that title. “Be positive”. Well, I can read all the positive quotes I want about being rich and thin. It won’t make it so. I’m sure Tony Robbins would disagree.
To add insult to injury, Dr. A.J. called me yesterday. He said that he had met with all of his colleagues and they had confirmed that I do, in fact, need radiation. Apparently, the “extranodal extension” of the lymph node is a game changer. Radiation affects the tissue and a patient should wait a year after they finish radiation to have reconstructive surgery. Since I planned on having my mastectomy and reconstructive surgery simultaneously, it will obviously change my timeline of putting this behind me. So, it’s looking like the soonest I can have my mastectomy and reconstructive surgery will be January 2015.
I’m not sure what exactly to expect Thursday. Chemo side effects vary greatly from person to person. Apparently, the Neulasta shot (to help build white blood cell count) given to me the day after is pretty awful.
For those of you who braved reading the entire post, I apologize. To my loved ones who will be there, I will try my best not to bolt before my appointment.