It’s Been a Minute

Well, it’s certainly been a minute since I’ve updated. Recently, I have struggled with what to share in this space. As I have said before, I generally update when I either have new information or am ready to share that information. In the last few weeks, it’s been the latter. I mentioned that I had been experiencing a lot of pain recently, but that my doctors and I had not yet formed a game plan as to how we wanted to approach that pain, because we did not really have a sense of what it was. On one hand, the pain I was experiencing was not so debilitating that we needed to treat it immediately, but on the other hand, I struggled with the manner in which to effectively advocate for myself. I felt conflicted as to whether to push for further testing, if for no other reason than to put my mind at ease. If I did, and the tests came back without indicating any problems of note, I knew I would feel like a hypochondriac, that patient who pushed unnecessarily for more interventions than needed. But if they came back indicating more problems, I would know that my anxiety, my stress was not in vain. But if I didn’t push for more answers, if I waited it out, I felt like I was pushing my needs, my concerns aside. I had done that once, with disastrous consequences, and ultimately, I could not let myself take that route again.

So I pushed for further testing.

The pain I had been experiencing was a familiar pain in my mid-back. It was a spasm, a tightening, and has been going on for a couple of years. The rib pain was similar to the pain that I had begun to experience immediately prior to my diagnosis. This pain could indicate a couple of things: progression of the cancer in my bones, which would be a sign that my current treatment is not working, or it could be considered a pain flare, a nerve response when the treatment is working to break up the malignancies. I had experienced a few pain flares before, since starting treatment, but none for a few months. Given that my most recent PET scan showed a favorable response to treatment, it was not unreasonable for this pain to be a pain flare. Knowing the unpredictable nature of metastatic breast cancer, however, it was also not unreasonable for it to be progression. We just didn’t know.

However, I hadn’t mentioned the headaches. About two months ago, I began to have very localized headaches. They were like little pinpricks of sensation, right above my left eye. At first, I didn’t want to think about them, and didn’t mention them, because the prospect of what they represented was far too frightening for me to even consider. Headaches can be a sign of metastasis to the brain, and, to put it mildly, would be a really, really bad sign. It would indicate that, in the last few weeks, my tumor had mutated in a way that allowed it to progress to another system – from my bones to my brain – after having a PET scan that showed clear lymph nodes. That would be a sizable, and very aggressive mutation. I mentioned this to my doctor, and we talked it over, discussed likelihood of different issues. In most people, the appearance of minor, but recurrent headaches in a single location do not merit a brain MRI. In people with metastatic cancer, they most definitely do. We elected do do a full brain and spine MRI.

I don’t think I mentioned this to many people. I have not been frightened in this way in a few months, really since the early weeks of my diagnosis. The spinning of my world slowed, as the rest of the world carried on. I felt bitter, alone, morose, having to shoulder this terrifying new burden alone. For the first time since my diagnosis, I had to truly begin to understand that this disease could very well change the course of my life, both in terms of the manner in which I would be able to function, and my life expectancy. I grappled with the recognition of my possible decline, as I continued to grapple with the loss of my fertility. I was pretty unpleasant to be around for a few weeks, and I withdrew, wanting to feel sorry for myself and my family. I cried an awful lot.

The full brain MRI was a few days before the Memorial Day holiday weekend. I had the scan on Wednesday, and we waited for the results. Thursday passed with no call from my doctor. That had to be a good sign, I reasoned to myself, because if there was something fishy going on in my brain, we would have already been given that information. Friday afternoon came, and I received a call from Dr. G. Aside from what could either be a possible skull metastasis (part of the bone metastasis system we are already treating) or a harmless blood vessel malformation (just to note it’s existence, but not something that needs to be treated, explored, removed, or even given more thought), my brain scan was clear. There is no brain progression, and we have a baseline reading, should I begin to develop neurological symptoms in the future.

As for the cause of the headaches, they could be from a number of things: a change in eye prescription, allergies, tension, or even just spending too much time on the computer. What we do know is that whatever the cause, it is not rooted in a physiological system at this time. My spine MRI also did not indicate anything major outside of the known metastases on my spine, which was also a relief. Still, I have trouble reconciling my push for these tests, knowing now that neither indicated any major issues or progression. Ultimately, I think it was important for us to gather that additional information, less for my peace of mind (although that is also important), but because my symptoms, my pain, is not something that should be swept under a rug. I feel confident in my care team because they readily agreed with me when I wanted to move forward with further imaging, and have the peace of mind that my symptoms will be a point of dialogue in the future, as they were in this instance. All things considered, I am doing well. I will have my next PET scan at the end of June, and my symptoms are consistent with disease that is responding to treatment.

I am hopeful, something I have not felt in a while.

6 thoughts on “It’s Been a Minute

  1. I’m so glad you were your own best advocate and pushed for the testing. I’m so sorry that you had to deal with the weight of waiting alone. I cannot imagine how difficult this road has been for you to travel. I can say however, with certainty, that thus far, you have traveled it with a strength and dignity that few people possess regardless of their situations. I am proud of you my friend.

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  2. So awesome to hear the positive results of your recent test. You inspire me. I get what you mean about pushing for additional tests. As a fellow Stage 4 (denovo) breast cancer survivor, every ache and pain that lasts more than a couple of days, starts a worm of fear and worry in me. As an career long – 29 years- Oncology RN (forced to retire due to my diagnosis), I have taught numerous patients to be an advocate for themselves or assign the job to someone they trust, I find it difficult to follow my own advice at times. We do live life with many double edged swords.

    I enjoy reading your blog. it makes me feel good. I thank you for that.

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  3. I’m so glad that you proceeded with doing the testing. I’m proud of you for listening to your body, and I’m in agreement: your pain is not something that should be swept under the rug.
    Thank you for sharing this.

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  4. I am very happy to read this. Though, I cannot imagine the waiting for such results, and mystery as to the physical pain.

    I am happy to read you have hope!

    Love, Shawna

    On Tue, Jun 5, 2018, 4:10 PM Beyond the Pink Ribbon wrote:

    > Emily Garnett posted: “Well, it’s certainly been a minute since I’ve > updated. Recently, I have struggled with what to share in this space. As I > have said before, I generally update when I either have new information or > am ready to share that information. In the last few weeks, ” >

    Like

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