I haven´t blogged in awhile, and that´s okay because I have a lot of summer travel plans, so I expect to be blogging regularly about my adventures soon. I prefer to blog about happy times than cancer, so I am very much looking forward to seeing new places and having some time away to think, regroup, and find my inner strength. My parents are coming for the Christmas holidays so we will spend the week together and then head down to Patagonia for twelve days to visit the southernmost tip of the earth and revel in it´s glory. I´ve also been told we might get blown over by the strong winds and that we might need to hold onto chains on some of the trails so that we don´t blow over, but I´ll save that story for when it actually happens.
This blog is not about my relief that a summer respite is in sight, but rather that there is someone that I need to thank profoundly for my being here today. A few weeks ago, a friend of mine told me that Dr. Buhler, the man who diagnosed me on that horrible October day back in 2012, is leaving the country shortly. Dr. Buhler, with his kind, blue eyes and pragmatic way of dealing with illness, is taking his family and moving back to Germany. I decided I needed to see him one last time, both to ask him the difficult questions about my future, and also to thank him in person for what he had done for me and for my family.
Jon and I attended the meeting together but International Patients had first somehow mixed up my name with a friend of mine, and then cancelled my appointment when she told them she did not have an appointment when they called to confirm. (Sigh…..) Regardless, the problem was fixed, but I´m sure Dr. Buhler was not expecting me to walk through the door that day. When we arrived he was very glad to see me, as the last time I saw him was in early September when I had my first post-remission pet scan. We talked about his upcoming move and then we began with the questions. It was important for me to talk to him about more long-term issues because Dr. Majlis, although I adore him, is more of a day-to-day kind of guy who dispenses medicine but maybe doesn´t worry so much about the long term. I don´t blame him since he probably needs to have some sort of escape method in order to deal with the worst of the cancer patients that come through the hospital. But Dr. Buhler has always been the guy I could go to if I ever needed real, hard answers.
Our questions were simple but important:
- What does my future treatment plan look like considering I will hit my two-year remission point in early April?
- If Jon and I were to move to another school somewhere in the world, what regions would my medicine be available in?
Dr. Buhler thought for a minute and then kind of shook his head. “You know, Elizabeth, you are a very special person. You´re what we in Chile like to call a Pescado something or other (Chileans help me out here…)_, which means that you are literally a head scratcher; you puzzle us. Most people who are diagnosed with advanced, metastatic cancer, like yours wouldn´t be here today. It is very rare for someone with your degree of illness to respond so well to the treatment and to have no signs of cancer two years later.”
I replied, that I definitely understood that most people with Stage Four aren´t expected to recover and that it was rare for people to go into remission and have these types of questions about long-term life. But, for sanity´s sake, I don´t like to think about that too much. He replied that he really admired that attitude and praised Jon and me for dealing so well in the face of a tragedy. He continued by saying that, “always, our goal with cancer treatment is quality of life. Considering your physical quality of life is very good again, about the only thing you can do is stick to your treatment and hope for the best.”
He also suggested going to see a geneticist in order to test for the BRAC 1 and 2 gene mutations. He discussed the Angelina Jolie phenomenon and told us about the benefits and statistics related to removing the other breast and ovaries as a precautionary step. Dr. Buhler said that if I tested positive to the gene, it would probably be statistically beneficial to go ahead and take the precautionary steps. However, he also said that usually people with metastatic cancer tend to relapse in the other places where the cancer spread and not in the original organ. That means that it is more likely that my cancer would come back in the bones, lung, or liver, rather than in the breast. And he said that, if my cancer were to come back, another doctor could pump me full of chemo again and hope the treatment worked, but that there wouldn´t really be much they could do. He said at that point it was more of a question of whether I wanted to or not.
Having more surgeries to remove another breast and the ovaries would also be up to me. This tactic of cancer prevention is useful for people who test positive for the gene mutation and therefore have an 85% chance of getting breast or ovarian cancer. However, since my disease spread to other parts of my body, those surgeries would not guarantee that my cancer wouldn´t come back. So, emotionally, the surgeries may impact my life worse than not having the surgeries. It might make it statistically more unlikely that it would return, but then again, I´m not really one for statistics. Basically, if I tested positive, the question would be, do I want to live without all of my female body parts or do I want to take my chances with them? They don´t have any data about patients who recovered from a stage four diagnosis, and so he can´t say whether or not this treatment would actually be helpful.
Jon also asked if I should be getting regularly scheduled Pet Scans as they do in the states to monitor whether the cancer had returned. In the states usually a person goes in for a Pet Scan every 6 months, or even more frequently, in order to test for relapse. He told us that he would really only go in for a Pet Scan when my original symptoms returned. If I felt good and could still do everything that I wanted to, he said it was probably better for me to go on living as though the cancer was not present. He said there was no evidence that patients who check regularly for cancer recurrence through a Pet Scan survive longer than those who don´t. He said that although it is a little fatalistic, it was up to us whether to get the exams or not. Some people feel better knowing that they are still in remission and some prefer not to know. Again, he said it was a quality of life issue and that if the cancer were to return, no invasive exams were going to help me survive more than not having the tests done. All of this, while difficult to hear, coincided with my philosophy towards my disease: don´t worry about it until it´s actually a problem. That was how I got through my initial diagnosis and that is how I´m trying to get through my days as a survivor. Sometimes it´s tough, like I have said in previous blogs, but I know I need to just focus on the positives in my life, of which there are many. Particularly, that I can afford my expensive health care unlike many who cannot.
Dr. Buhler also said that we should feel free to move anywhere we like, and that if I could afford to pay for it, my drugs would most likely be available in any capital city in the world, barring a move to a remote African or Asian village. Two and a half years ago, Perjeta was a brand new drug, but now it is the most commonly accepted form of treatment for patients who present with an HER2 positive cancer. With the advent of the internet, most doctors in the world now have immediate access to information about new treatments and drugs and so I should not be scared to move to a place where I would not be able to continue my treatment, because anywhere we would want to go, would most likely have the drugs. This seemed to ease some of Jon´s immediate fears about moving and so I am hopeful again that we could leave Santiago some day and try somewhere new, as long as my insurance plan included coverage for breast cancer treatment.
As all of our difficult questions were answered, we rose to leave. Dr. Buhler ended by saying that all of the days, months, and years that I felt good and did not present any symptoms of cancer, that was another day, month, or year closer to my being “cured” of my disease. I rose to thank him, and was annoyed that I hadn´t brought a card and a bottle of wine as originally planned because I knew I was not going to be able to say everything that I wanted to say to him. As soon as I said, “We want to thank you…” my voice went all wavery, the tears began flowing, and I couldn´t get a coherent word out. So typical! But he gave me a hug and told me that my ugly cry face was the best thank you he could have received. (I personally feel like a good bottle of Cabernet would have been preferable, but… to each their own.)
So, since I didn´t get to write what I wanted to in a meaningful and heartfelt card: Dr Buhler, thank you so much from the bottom of my heart. Thank you for helping me, and my family, deal with the scariest parts of my disease. During that initial, shocking meeting where you told me that I had cancer, through my first chemo session and the three times I had to go under the knife for surgery, your kind face and sense of humor were there reassuring me that everything was going to be okay. I will never forget this kindness and I know that your future patients will be lucky to have you whenever they are faced with a difficult decision. My quality of life has been greatly improved because of you, your professionalism, and your ability to treat the whole patient. Auf wiedersehen and good luck in Germany!
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Love reading your blog, Eli! Somehow, I’d missed this one in December, but I saw it today. And after seeing your FB post, I’ve been thinking about you all day. I miss your great, big laugh and your grace-under-fire amazing self. And I admire your honesty and your sharing of much of what you’ve been going through–that is just one of the MANY ways in which you show your strength.
My little post here can’t possibly sum up how awesome and strong I think you are!!