No News Isn’t Good News

Well, well, well. Look who’s scraping away the cobwebs over here. Unfortunately, the title of this post probably gives away my essential update – so, no, I haven’t been absent due to scan results so stupendous that I had no choice but to buy tickets to Europe and galavant my way across the continent, celebrating newfound health and vigor. Last I left off, I was in the midst of Taxol hell. Unfortunately, Taxol gave me no reprieve in it’s desire to make me miserable. I am generally fairly tolerant of drugs – my side effects have generally been manageable and on the milder side. For Taxol, this was not the case. I suffered. A lot. I experienced pain the likes of which I had never really known, which resulted in two trips to the emergency room (and also a UTI, which resulted in another trip to the emergency room). It was a very clear lesson for me both in understanding my body from a symptom/side-effect management standpoint and also in recognizing the importance of proper pain management. This was, in many ways, a very difficult thing to do. I have never been one to take most medication willingly. (I’m not sure why I tend to be so resistant to them, but I know that, as he reads this, my husband is going to fall into a deep coughing fit so as to mask the fact that he is shouting the words “BECAUSE YOU’RE INSANELY STUBBORN!!!!”) However, that ship has sailed. I am far less stubborn – or whatever you want to call it – about managing my pain, and therefore pain medications – because if I do not, my quality of life dips precipitously, and I do things like end up in the emergency room getting a chest CT to rule out pulmonary embolisms (which were, fortunately, ruled out). At my regular follow-up appointment, I finally spoke to my oncologist about a referral to the pain-management/palliative care specialist, who has provided me with a much more appropriate pain-management medication regimen. I believe that I can speak for my entire family in saying that this has been a massive improvement. Unfortunately, it has come at a cost, that cost being that I now require daily pain-management medication. That has been a hard pill to swallow – oh yes, I went there – but, like so many other aspects of life with metastatic breast cancer, it has required me to pivot, to regroup, and to shift my understanding of the life I am living. And also to be slightly less stubborn regarding pain medication.

In related news, I also finally had a chest port placed, after my veins began to roll and collapse from chemo. I was also resistant to the port, in a lot of ways because it felt like admitting defeat. I was also very nervous about having something poking out from under my skin. I tend to be fairly sensitive with those types of things, and I worried quite a bit that the port would drive me nuts, and that I wouldn’t be able to be comfortable with it in. While it did take me some time to adjust to it – nearly a month in all – now I rarely notice it. The only time I do tend to notice it is when I’m sitting on the couch in the evening in a certain position, and, for whatever reason, it gets sort of stiff. Otherwise it’s healed well, and is remarkably easy and useful.

The biggest irony with my port placement, however, was the timing of it. I was scheduled to receive my 12th Taxol infusion on September 25th, the same day as my port placement procedure. Both the port placement and the subsequent chemo infusion went as planned. However, the following week, I had my first set of scans following the start of Taxol. I wasn’t sure what to expect – I thought that Taxol would be working, because it was making me sufficiently miserable that I couldn’t imagine it NOT working, and going through so much hell for nothing. I had had a few targeted scans as a result of my emergency room visits, and none of those scans seemed to indicate that anything major was off. My tumor markers, which had jumped significantly in July prior to the start of Taxol, had come back down, and were hovering around normal ranges. My bloodwork looked reasonably good. It had been nearly a year since my last truly stable PET scan, and I was feeling fairly optimistic about my chances on Taxol.

So, naturally, when my oncologist called and reported that I had developed new liver lesions while on Taxol, I was devastated. Taxol hadn’t worked. It was supposed to be one of the heaviest hitters available, and it hadn’t done its job. What the actual fresh hell was I living in now? Nothing seemed to work. I saw the grains of sand in my hourglass slipping down, faster and faster, and all I wanted to do was make a simple flip of the bulbs and reset my clock. But I couldn’t do it, I could only sit uselessly and watch the sand pour down.

My oncologist, however, had a plan. Because the majority of my metastatic sites (my bones and most liver lesions) were still considered stable, she wanted to screen me for clinical trials. There were a number of options available that had piqued her interest – several that involved low-HER2 or HER3 expressing mutations, as well as a potential immunotherapy trial that showed promise. All of the trials required that I have a several-weeks break from any sort of chemotherapy or other treatments, which I was more than happy to do. While there were a number of hurdles to clear before I could be accepted into any of the trials – namely, whether I qualified based on tissue samples and whether I would be given the trial drug or the standard of care chemotherapy drug, we all felt fairly optimistic that one of the options would work out, it was just a matter of waiting a couple of weeks. And so we waited.

During that wait, I was scheduled to have my six-month follow up brain MRI, after having had SRS brain radiation back in April. My two-month scan following the treatment had been stable – both lesions had shrunk, and there were no new lesions. I had not really been having any sort of symptoms that I noticed prior to the scan, with one notable exception. Less than two weeks prior, I had started experiencing flashes of left-side facial numbness. It felt similar to what I’m told Bell’s Palsy feels like, but the numbness only lasted for a few moments and then was gone. It was very strange, and very unpleasant, but I didn’t think much of it, knowing that I had a brain MRI already scheduled. And, of course, those symptoms were something.

My brain MRI came back showing a new, very small (3 mm) lesion, but also some shadowing that – coupled with my facial numbness – was a strong indicator of leptomeningeal metastases. What that means, essentially, is that cancer cells had grown on my meninges (the thick membrane that protects the brain) and on my spinal cord, had crossed into my cerebrospinal fluid and were circulating within that fluid. In other words, it’s similar to a meningitis infection, but instead of the infection being bacterial or viral, it’s cancer. This is considered, in many ways, one of the worst types of disease progression to have because it’s notoriously difficult to treat. Cerebrospinal fluid is designed to act as a protective barrier for the brain and central nervous system, so it’s very difficult to find drugs that will cross that barrier. Further, it’s a very nutrient-rich environment that allows for cells to proliferate without much risk of interruption. Lastly,  the current treatment options (generally, radiation) are not able to fully access all of the fluid as it circulates, making it nearly impossible to fully eradicate the disease from the spinal fluid.

So this was pretty terrible news. Actually, it was the absolute worst news. I had prepared myself for a lot of things, and in the days leading up to the brain MRI, felt an overwhelming sense of foreboding, that something was going to be very, very wrong. I had no sense of what that might be, only that I was extremely on edge – apparently, with good reason. I don’t know if I’ve ever broken down so fully as I did in the days following this news. That alone frightens me, but the fact that I know now that I will continue to receive news that is worse than this news terrifies me to no end. Left untreated, lepto mets can spread very rapidly, often causing someone to die in a matter of weeks, maybe months. Even with conventional treatment options, life expectancy is considered in the span of months. I felt, and continue to feel, the narrowing of the lens through which I view my life. Making plans for weeks, even months, ahead of the now is a trigger for me. More often than not, when a well-meaning acquaintance makes an offhanded comment about an indeterminate time in the future, I am reduced to tears. I know that the likelihood that I will see that time is very small.

As to be expected, this new diagnosis set off a flurry of additional appointments. The first of which was a lumbar puncture, required to confirm a leptomeningeal metastasis diagnosis. Without going into great detail, I will say that the lumbar puncture was god-awful, and if I never have to repeat it again, it will be too soon. (Unfortunately, I will have to repeat it every few months for the rest of my life, as this is the best way to monitor the volume of circulating tumor cells in my spinal fluid). I also met with a neurologist, Dr. B, who specializes in leptomeningeal mets, as well as a neuro-radiation oncologist, Dr. Y, who has been conducting an innovative clinical trial treatment for lepto mets as well. Between the two of them and my medical oncologist, we developed a plan. Unfortunately, the previous plan with the promising clinical trials, had to be completely scrapped. Active Central Nervous System (CNS) metastases such as mine tend to be an exclusionary factor for many clinical trials, and my newly developed CNS mets excluded me from all of the trials we had previously entertained. The new plan unfolded as follows: I started a new chemotherapy, Doxorubicin (also known as Adriamycin, colloquially known as the Red Devil) for two weeks in order to attempt to stem the growth of my liver metastases. One of the major factors in prognosis with lepto mets is whether there are other active sites of metastatic disease – basically, if the lepto is the only thing going on, you’re likely to live longer than if you have other organs that have uncontrolled cancer. Unfortunately, I fall into the latter category with my progressing liver mets. After receiving two doses of this chemotherapy (did I mention that this is considered the most difficult and toxic chemo available?) I would undergo ten treatments of proton radiation to my entire head and spinal column. This requires that I travel to New Jersey for treatment every day for two weeks. After I finish radiation, I’ll go back onto Doxorubicin and continue to receive it weekly until further notice. Currently, I’m in New Jersey and tomorrow I will receive my seventh of ten doses of proton radiation. The treatment has been fairly difficult for a number of reasons, but it’s my best option right now. At this point, time will tell whether it works, what my next steps are, and what treatment options present themselves.

15 thoughts on “No News Isn’t Good News

  1. Emily, you don’t know me, but I follow you on FB. You are so incredibly strong and full of grace. I wish you peace on your journey, and thank you for sharing it with us.

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  2. Oh goodness, Em, I’m one of those people, my intentions are only good, but none of that matters. I’m so sorry that I hurt you, even unintentionally. I’m so sorry that you are going through this. I’m so sorry that your parents and loved ones are watching this happen to you. I’m so sorry that Christian and Felix aren’t getting what they deserve. I’m so sorry that your dreams have been broken. I’m so sorry that life is so fucking unfair.

    Em, it’s all such fucking bullshit, but the impact that you’ve made on this world will live eternally.

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  3. I don’t know you personally but have followed your story and been inspired with each post. I was diagnosed with breast cancer last year. There is not one thing “fair” or one thing that makes sense with this disease. You are an awesome person that has so much more to share with the world. I think of you often and thank you for sharing your story even on your darkest of days. Prayers continuing for you and your family.
    -thinking of you from Texas

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  4. You are an incredibly powerful writer who exposes herself to the world through your sincere words. My words cannot express to you how saddened I am for you with this “new” diagnosis.

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  5. Oh Emily, cancer so sucks! Can’t believe that you can write about it with such clarity, I wouldn’t have the courage to do what you are doing. Sharing it with us is truly amazing and hopefully will help another cancer patient. I wish I could do something meaningful to help, we do not know each other, but I have been following your site for awhile. Follow your heart and I will be sending good vibes your way. Elise

    Sent from my Samsung Galaxy smartphone.

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  6. I’ve been sitting here staring at my computer screen trying to come up with words after reading this post, and all I’ve got right now is this (pardon my language): FUCK.
    I am so sorry, Emily. Not to put the onus of asking on you, but is there anything that I can do to help alleviate the burden of any of this? I so appreciate you sharing such personal news with us, and want to thank you for keeping us in the loop- I think of you quite often and am so grateful for this online friendship that we’ve forged. You’re never alone in this.
    Sending you the biggest virtual hugs and love today (and every day).
    -Nora

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  7. Emily, I’m at a loss for words. I’m so sorry. I will keep you in my thoughts and hope you find relief – from progression, from pain, from fear. Much much love to you.

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  8. I’m so sorry! I heard you speak at the Westchester MBC conference last weekend – you were amazing!! I am so sorry you’re dealing with so much. Nobody deserves it. Big hugs to you and your family. I was recently at a YSC meeting in Chappaqua, and was told I “HAD” to meet you!! 🙂 You’re in my thoughts and I wish I could do more.

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  9. Oh my heart. I’ve read this several times wanting to respond, I’m in disbelief, this cannot be happening to you. You are always in my thoughts. Sending love, Jeanne

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  10. Dear Emily, I am profoundly sorry for the pain that you and your family are going through. With gratitude, I learn so much of value from each of your posts. They leave me more knowledgeable, a bit wiser, and deeply moved. Your spirit shines! I hold you and your family in my heart. Donna

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  11. Hi Emily,
    I am so sorry about these awful developments. I am glad you have a plan, and I hope things are going as smoothly as possible. I’m grateful you are sharing and giving us a glimpse into your reality. Sending you much love. In your corner. Always. x

    Liked by 1 person

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