Friday morning I had an appointment with Dr. Sara to find out the results of my PET/CT scan. I think everyone - Dr. Sara included - expected that the results would show that the cancer in my breast and liver was no longer "lighting up" on my scans.
My parents and I were placed in an exam room and Dr. Sara came in shortly after. He explained that he only had about 15 minutes to talk to us because he had to get to a conference. I knew this already since his admin James had called me the day before to ask me if I could come in an hour earlier than my originally scheduled appointment time for this reason. He apologized for not having more time, and said that he needed our full attention and concentration and that he would be very clear. At this point I knew the news was not as simple as we all expected and my heart started pounding loudly in my chest.
Then he told us that the cancer in my breast and my liver was no longer lighting up on the scans. Of course, this is a good thing and what we expected. However, the scans showed something else we did not expect: two small spots on my vertabrae. When I heard this, my mind briefly flitted back to a time earlier this year when I'd heard - I think from Dr. Sara though I don't entirely remember - that when breast cancer has spread to the bones, it is usually considered incurable. But I did not let my mind rest there, because Dr. Sara was still talking and I needed to hear what he had to say.
He said these are not new spots. It appears that they have been treated by the chemo, which makes the bone denser and therefore they more easily appear on the scans. He said he would not have expected any radiologist to find these small spots back in January. He explained that the tests I had scan 3mm slices of my entire body. I get the impression that finding these tiny spots would have been like finding a needle in a haystack. But, now that the denser bone is causing it to show up, they knew exactly where to look and so they pulled my scans from April and January, and sure enough, they were there.
So what now? It is not a clear cut answer by any means. Dr. Sara presented my case at tumor board the day before, and, unlike the time he presented my case after the cancer in the liver was discovered, this time there was no consensus on what the course of action should be. Many doctors would see evidence of the cancer in the bones, consider me incurable, and then change the course of treatment, possibly recommending that I not even go through surgery since the goal would no longer be to cure me, but only to treat the cancer and keep it at bay as long as possible.
But Dr. Sara has not given up yet. He recommends that I have a bone scan, which will more accurately determine if there is evidence of cancer in the bones. He used the terms "hot spots" and "cold spots". It's possible that the bone scan will show only "cold spots," meaning no evidence of active cancer. If this is the case, then my treatment plan will likely proceed as scheduled. I will still have two surgeries and radiation to the breast, but I will also have radiation to the "cold spots" in my bones. Dr. Sara said there is a brand-new radiation technique that is extremely precise in treating small affected areas, and this is the technique that would likely be used on me. He even spoke to the radiation oncologist about it the day before.
If the bone scan does show some "hot spots," then I will need a bone biopsy to determine whether those hot spots are indeed active cancer. And if they are, well, I'm trying not to think too much about what happens then. My treatment plan may change, although Dr. Sara seems to think that I will probably have surgery no matter what. He even consulted my liver surgeon Dr. Attiyeh the day before who told him again that the liver surgery will not be overly invasive.
Dr. Sara said that he does not know what the bone scan will show. This is not like the time prior to my tests in April when he said very confidently that he was certain that my scans would show the spot on my liver had been cleared up (and he was right). This is more of an unknown.
He said that he is actually almost glad that these spots on my bone were not discovered in January. From the start, the plan has been to be "bold" with my treatment, with the goal of curing me. If the spots on my bone had been discovered in January, this may not have been the case. I may have had a less aggressive plan of attack, since the goal would not have been to cure me but only to "treat" me. And it's possible that this aggressive plan may have treated - dare I say maybe even eradicated - the cancer in my bones that we didn't even know was there.
Dr. Sara also dutifully said that I may want to consider getting a second opinion, since there really is no textbook plan for my case. I do not see any point in getting a second opinion though, and I told Dr. Sara that. I said that it sounds to me like no one will recommend a more bold plan of action than what Dr. Sara is suggesting, and if the other doctors are only going to tell me that I am incurable, well, I am not going to listen to them.
Dr. Sara answered the few questions we had, and then apologized again that he couldn't stay longer and said we should take some time to let all this sink in and gather our questions and that when I saw him next week for the results of the bone scan he would have more time to go through everything. Debra the nurse practitioner left us alone in the exam room as she went to go have James get started on scheduling my bone scan and follow-up appointment with the doctor.
When she came back, Dad had a question for her about whether it was two spots on one vertabrae or one spot each on two vertabrae (it is the latter). Then she sat down and looked at me and said of Dr. Sara, "He is really fighting like the dickens for you. That tumor board yesterday... well, it made me very thankful to be working with him." Her voice caught as she was saying this, and I could see the emotion in her eyes that she was trying to hold back.
After we confirmed both appointments with James - my bone scan is scheduled for Wednesday morning and the appointment with Dr. Sara will be Thursday afternoon - we stopped in the little cafe in the hospital lobby for coffee to regroup before heading back to work. At one point, the Sarah McLachlan song "Angel" came on. It was the last thing I wanted to hear. Nothing against Sarah, but seriously, that song is like a dirge and should be banned from hospital grounds for being too depressing.
Since learning this news, my thoughts have been like a pendulum cutting a wide swath through my brain. On the one hand, it's hard to not to think about the word "incurable" and what that might mean, or the implications about what the other doctors on the tumor board thought, or what another doctor would tell me should I seek a second opinion, or what happens if the bone scan shows "hot spots," or the fact that Dr. Sara really doesn't know what it will show.
On the other hand, I think about how well the chemo treated my breast and liver, and so why wouldn't it do the same to the bone? I think about how Dr. Sara did say that it appears to have been treated, which is why the bone is denser and made it show up on the scan in the first place. I think about how my sister, who just finished reading a book about the development of Herceptin (the same book the Living Proof movie was based on), told me about a woman in the book whose breast cancer had spread to the bones and who had ultimately been cured of the disease (granted, we don't know what happened after the book ended, but still). I think about how grateful I am that my cancer is Her-2 positive and how miraculous Herceptin has been for so many others, and how hopefully I will turn out to be another one of those success stories. I fantasize about how a year from now, I will hopefully look back and be able to say, "Wow, I really kicked something that was really, really serious," and the sense of triumph and growth I will feel.
For two days, that pendulum has been swinging, and it has reminded me a lot about that first weekend after I was diagnosed, but before I knew exactly what I was dealing with, and also about the time we found out that the cancer had spread to my liver and was Stage IV. It's the unknown that is the worst part. After coming home from work on Friday I was so exhausted from the emotionally draining day that all I wanted to do was sleep, but when I went to lay down the pendulum swung in the wrong direction and I couldn't stop the flow of scary thoughts. It's gotten better since then though.
Since my diagnosis, a lot of people have complimented me on my positive attitude. I've thought a lot about whether it's possible to have an attitude that is "too positive," that is so sunny that it ignores reality until it sneaks up behind you and then leaps in front of you, laughing in your face. I've tried to keep myself in check - to maintain that balance of staying positive but always remembering that nothing is a given when it comes to cancer (or anything else really). The thought even crossed my mind last week that I was being too cavalier about my test results. I had written in this blog and to a few friends that I "had no doubt" the results would be good, and as I began to type those same words in an email to another friend last week, I decided to delete them because I was afraid I'd said that one too many times and would be jinxing myself.
But now that reality has made its existence known, I do not regret my positive attitude. Yes, I was a bit blindsided on Friday, but would my reaction have been any different, would the news have been any easier to take if I'd had a doom and gloom attitude leading up to my appointment, if I'd been expecting bad news? I don't think so. I do not look back and wish that I had seen this coming because at the end of the day, it doesn't change anything at all.
The positive attitude has served me well so far, and so I'm sticking to it. And so I'm trying to keep my thoughts leading up to Thursday on the positive side of that pendulum swing. I don't know what the reality will bring, but I am going to assume that it will be good news, and I know - from experience now - that I won't regret that assumption no matter what happens.
And now I have to go because I have that dumb Sarah McLachlan song in my head again and I need to go play something upbeat to get it out. :)