I went to see Dr. P., my oncologist, for a follow up visit yesterday. She began by asking me how I felt. For the most part, I feel very good, with two exceptions. I do have a lot of joint pain. Everyone in my "support group" has acknowledged experiencing joint pain. Initially, it was most noticeable in my knees, but now it has moved to my shoulders, and is worst at night. Dr. P. indicated that she is seeing a lot of this ... arthritis-like symptoms following chemo, especially in young women. She said it should resolve itself in months, or a small number of years...
Next I mentioned that I am still going to physical therapy twice a week to improve my range of motion. I feel very bound up and my movements are still pretty restricted, especially on the right side. (Erica, my physical therapist observed last week that while we have made significant gains in resolving the scar tissue and "congestion", the muscle was pulled really tight during surgery, and she is not sure if I will ever regain 100% of my pre-surgical movement.) Dr. P. noticed that there is still a lot of edema on the right side which will take awhile longer to dissipate. She agreed that the muscle is tight and said that after the fluid is gone, we can do a chest MRI and see what we are dealing with.
I mentioned that my hot flashes seemed to be on the decline and asked if that could be a sign that my periods may be returning. She said that was a possibility. I said, “Do we want my periods to return?” She responded, “For estrogen receptor positive breast cancer, we don’t. For heart health and bone health, we do.” Lovely. The future is bright - breast cancer with awesome bones and a reliable ticker, or cancer free with brittle bones and a feeble heart. Well, forgot that. To the extent that I can control it, I intend to be cancer free with strong bones and a healthy heart!
To prevent the recurrence of breast cancer, I will shortly start taking a drug called Tamoxifen. I will stay on this drug for two years. If my periods return, I will continue on the Tamoxifen. If my periods don’t return after the two years, I will be put on an aromatase inhibitor, which has been shown to be more efffective at preventing recurrences in post-menopausal women than Tamoxifen. Dr. P. said that most young women don’t experience many side effects from the Tamoxifen. (Dr. H. told me at my last appointment that the most common side effect is severe hot flashes. A dangerous, but highly unlikely side effect is blood clots.) I prefer Dr. P’s briefing of the medication as she obviously subscribes to my theory that ignorance of possible side effects reduces the likelihood of expperiencing the side effects. Prior to the Tamoxifen, I will have a bone density scan to provide a baseline measurement of my bone health.
I showed her my hair and remarked on the lack of progress. Instead of telling me to be patient, she agreed that the growth was not what would be expected nearly five months after the completion of chemo. Oh great. “Well, what would cause that?” I asked tentatively. “Low thyroid,” was the immediate and matter-of-fact response, an answer I wasn’t prepared to hear and certainly didn’t want to hear. She said that the lack of growth on the outside of my eyebrows was another possible sign of low thyroid. Yeah, I was wondering why my eyebrows hadn’t filled back in to their pre-chemo fullness....
I automatically slipped into interrogation mode. I asked her what would cause low thyroid and if there was any connection to the chemo. She indicated that it was an auto-immune response and that the chemo would not have triggered it. “It’s good if that is what it is,” she said, “It’s a quick fix. You would just go on medication.” I eyed her suspiciously. She knows of my disdain for any form of "unnatural" medical intervention. (Yes, I know that chemo, radiation, surgery, and tamoxifen definitely fall into the unnatural category, but I was compelled to make some exceptions in light of the diagnosis and my unwillingness to put my life on the line with unverifiable natural treatments.) “It’s just giving your body what it needs, like a vitamin,” she assured me. Still skeptical, I asked if this quick fix was a short-term thing or a long-term. “Long term,” was the response, as in the rest of my life. My disappointment was obvious. “You’ll just need to take a vitamin every day,” she said trying to reassure me.
“Well, what if it isn’t my thyroid?” I asked. “Then it’s the chemo,” was her answer. I asked her for other symptoms, and she mentioned fatigue and dry skin. I have a little of both, but then so does almost every working mother with three young children whose husband just returned to work after being home for eight years and who now has to do everything he did plus run a business, during the winter months while living in house with very dry heat. That didn’t help us much. She ordered two additional tests to be run with the other blood work.
We discussed how I would be monitored moving forward. She said that after my next six week visit, I would graduate to three month appointments for a period of two years. Then I matriculate to six month appointments. At each appointment, I’ll have blood drawn to monitor blood counts, bone and liver enzymes, salts, and other “stuff” to determine the presence of cancer. Instead of mammograms, I will have chest wall MRIs to detect a local recurrence of the cancer.
I then went somewhere I wasn’t sure I wanted to go, but I did anyway. A few weeks ago I was explaining the staging of breast cancer to my aunt and cousin and referring to a chart that was given to me int the beginning. It suddenly hit me that the presence of tumors in three quadrants of my breast seemed to fit the criteria for Stage III. I felt sick about it and was quite concerned about it for my customary 24 hour worry period. I thought about calling Dr. P because I wasn't sure if I could wait until our next scheduled appointment to learn the answer even though knowing the answer wouldn't change anything. I finally talked myself off the ledge, but when I saw Dr. P today, I just couldn't help myself, and I went there.
I told her that knowing the answer wouldn’t make a difference in what we had done or how we would proceed, but that I still felt the need to know. It's just the way I am, and I shouldn't try to analyze it beyond that. The initial staging of my breast cancer put me at IIB due to the size of the tumor and the lymph node involvement. I asked if the post-surgical pathology showing that the cancer had spread into breast tissue beyond the primary tumor bumped me up to Stage III? She never really answered the question. She said that she would have to review the lab report. She did mention that what they do know for sure is that any node involvement of more than three has a significantly higher rate of recurrence. I had two. After chemo. So we will never know. How many were positive. Before chemo.
I know that staging is imprecise, and I know regardless of how we choose to label or categorize the breast cancer that was, ultimately, the outcome will be whatever it is going to be. I also know statistics are on my side, and when doubts creep in, as they occasionally do, statistics are how I choose to reassure myself. (Kind of ironic for a gal who found no comfort from statistics while enduring that class in college.) So I left without the specific question answered, but it doesn’t matter. I won’t ask again. She understood the real question I was asking, and she responded in the way I needed.
Dr. P. asked me if I was depressed. I told her that contrary to what she may have observed during this appointment, I am generally very happy. The thyroid announcement certainly didn’t do much for my mood. Also, if one is ever able to conveniently forget about having had cancer, a visit to the oncologist is a sure-fire, slap-in-the face, alarm-ringing reminder! It’s difficult to have real positive associations with that office, so psychologically and emotionally speaking, just walking into the office can be a downer! We also discussed the feelings that accompany the completion of treatment, the kind of disorientation I described in my last posting. All things considered though, I feel really good, and I am happy.
So, I left the office and felt like crying. Low thyroid? Come on! Do you know how frustrating that is? I have altered my lifestyle significantly. I gave up coffee, for God’s sake, not to mention, alcohol, meat, stress, soda, and dessert (most of the time.) I exercise at least four times a week. I do yoga and meditation. I make sure I get at least eight hours of sleep. I am boring! And for what? I thought I was on the road to great health! I wasn’t sure whether to go to a bar or to Starbucks to drown my sorrows. I just feel that I deserve to be healthy now!
So what did I do? The boring thing, of course. I hit the treadmill and pounded out my frustrations in a productive way. I also did what I have been doing for as long I can remember when I needed to talk (excluding the turbulent adolescent years when he went through a stage when he really didn’t know what he was talking about)…. I called Dad. We talked for most of my 45 minute workout on the treadmill. Dad helped me release my emotions, and the treadmill helped me release endorphins, so I felt much better afterwards. I didn’t race to the computer to google “low thyroid.” I decided not to worry about it until such time that I received a more definitive diagnosis. If and when that happens, I will go into research mode and develop a comprehensive list of questions for the next doctor in my future.
As usual, it took about 24 hours for me to absorb and adjust to the new information. I wasn’t completely surprised or alarmed when the phone rang this afternoon and the oncology office's info appeared on the caller id. Dr. P's assistant said that Dr. P had left a message earlier. (Dr. P must have called when I walked to the bus stop to get the Cole and Clay, so I hadn't heard it.) The assistant was calling to tell me when I needed to come in to the office in the morning to have more blood drawn since one of my tests was abnormal.
I felt like I had been kicked in the stomach. “Which test?” I asked. “One of the thyroid tests,” was the reply. "But the cancer tests were all fine," I asked. I felt a huge sense of relief when the response was, "Yes." Thank God it is only the thyroid! (It’s all about perspective, isn’t it?) One of the thyroid tests came back normal, and the other was abnormal. A call to an endocrinologist resulted in a recommendation that I return for more blood work. I have an appointment for 9:00 a.m.
I almost called this posting "Approaching the last straw," but I don't want to tempt fate, and truth be told, I am far from the last straw. I have far more goodness in my life than, for lack of a better word, crap, but I sure would appreciate fewer items appearing in the crap column. No, I don't want to have thyroid issues on top of everything else right now, but if I do, I will deal with it. For one, I really don't have much of a choice. I can only control how I choose to respond to the latest challenge. Second, if it is my thyroid, all I have to do is start popping those vitamins, and I'll finally get my hair back!