It’s been a hell of a few weeks here in cancer land. A hell of a few weeks.
As you may remember, I had gamma knife to my brain metastases back in May, and I also had radiation to a spot in my lung and a bone met in my shoulder. Then I went on Keytruda and Yervoy, a pair of immunotherapy drugs, in hopes that they’d shrink my cancer. I did two cycles of the immunotherapy drugs, and then some not awesome shit happened.
I’ve been having a lot of coughing fits, despite the radiation we did to my lung to try to shrink the tumor there. Sometimes I cough so hard, I throw up. One night at bedtime, I had a particularly bad coughing fit, threw up, and then came back to bed to lay down. The next thing I remember, I was in an ambulance. Apparently, I had a pretty major seizure that went on for about 5 minutes. My husband was there for the whole thing and made sure I was OK, called 911, and had someone come over to watch the kids so he could come with me to the hospital.
I spent the next couple of nights in the hospital, and had some testing done. I had a brain MRI, and it showed what may be leptomeningeal metastasis. Lepto mets are in the fluid around the brain, and the prognosis for them is not good–we’re talking a couple of months. Two dear friends of mine died of lepto mets last spring. Standard treatment for lepto mets is to put in an ommaya, which is basically a port into your head so that chemo can be put directly into the cerebrospinal fluid to try to kill any cancer cells in there. And, wholebrain radiation is also often part of lepto treatment. These tend to buy a bit of time, but not much, and come with impacts to quality of life, including fatigue, nausea, cognitive impairments…so, yeah, treatment for lepto isn’t awesome.
I have no interest in an ommaya. If I only have a few months to live, I don’t want to spend them hooked up to IV chemo that makes me feel like shit. So, I had a talk with #bestdocever, and we talked about me probably entering hospice. There were lots of tears. On the way home, I told The Hubs that I want to take the kids to Disneyworld, and we started making plans.
The next day, I was laying in bed watching the news and I had the most intense deja vu of my life. It was as though I’d heard every word the people on TV were saying. I called for The Hubs and tried to explain what was going on, but wasn’t able to speak clearly. And then, the next thing I remember is being wheeled out of the ambulance at the hospital. Apparently I had another long seizure, this time about 4 minutes. I spent another night in the hospital and had a spinal tap to test my CNS fluid for lepto mets. I also had fluid drained from around my lung to help with the cough.
Then there’s the part where things start to get weird: the spinal tap came back negative for lepto mets. Negative. Whut? I’m not within months of dying? WTF? We’re having a second lab take a look at it, but it’s possible that the seizures aren’t being caused by lepto mets, and are just from a regular brain met bleeding. I’m going to have a spinal MRI to look at the spinal fluid and see what we see, but if the second lab comes back with no lepto mets, and the spinal MRI doesn’t show any signs of lepto mets, then holy hell, I’m not going to do hospice after all. I’m going to do treatment.
What we’d be looking at is whole brain radiation, and xeloda with temozolomide. I’m expecting pretty serious fatigue and some nausea, but also for treatment to buy me a lot more time than it would with lepto mets. Whole brain radiation may also come with cognitive decline, and that’s something I doubt I’d choose if I didn’t have two young children who desperately need more time with their mother.
The other thing that’s going on lately is bone met pain. I’ve got a bone met in my sacrum and one in my left hip, and they hurt. A lot. I wake up every morning in pain, and it takes time for my pain meds to kick in so I can be functional at all. The pain meds make me a bit loopy too, which isn’t awesome. I’m also on cough medicine to help keep me from having such horrible coughing fits, in case that’s contributing to the seizures. And, I’m also on anti-seizure medicine, and hoping that’ll keep me from having any more seizures.
As you can imagine, going from “you have only a brief time to live and you’re entering hospice” to “you’re going to have a bunch of treatment that will come with lots of side effects but buy you a decent amount of time” has been quite the mind fuck, not just for me but for everyone in my world. The Hubs is going from FMLA leave back to working full time, but also worrying about whether I’ll have a seizure while he’s at work. I’m giving up a lot of the advocacy work I had planned for the fall, including a trip to Lisbon for an advanced breast cancer conference. My time now is really going to have to be focused on the physical fight against my cancer, and making memories with the family. I’ll do advocacy work when I can, but it won’t be as much as I’d like to be doing. Cancer just isn’t going to let that happen.
And, it’s still entirely possible that there’s lepto mets going on in there, and the next round of testing will show that. If that’s the case, I’ll be back to thinking about hospice. Hopefully we’ll know more in a the next week or so.
Anyway, that’s what’s been going on in my fucked up world lately. I’ll do my best to keep you posted, but if you don’t hear from me as often as you’d like, I hope you’ll be patient. This is a really difficult time for me and my family, and I’m so grateful for all the love everyone has shown us over the last few weeks.
20 thoughts on “Progression”
You’ve had a hellish time, and I wish wholeheartedly the best for you and your family. I wish I could hug you, but a cyberhug will have to do. Just know how much we love and care about you. <3
A hell of a few weeks. No kidding. Your family has been through unbelievable trauma and upheaval, among other things. Thank you for sharing with us. Keep us posted when you can. We love you, Beth. xo
We’ve never met- but I admire you with my whole heart as an mbc patient myself. I am in a time of “durable stability” – let me be your legs and do some of the work you can’t. How can I help? How should i prioritize my advocacy? Focus on you and your family and go to Disney! Damn it.
Thinking of you and your family, Beth. Hoping for something better than the best possible outcome. Thank you for keeping us informed about your health. xo
I can’t think of anything inspirational to say to you. You are the best life warrior I’ve ever seen.
XO to you four.
Love, love, love to you and your family, Beth.
Thank you for the update Beth. How crazy is this. I am amazed at your strength, courage and stamina and I am grateful for your advocacy. And as Rachel said, you have done quite enough in that regard. I am wishing you the easiest of travels through this new treatment. For what it is worth, anti-seizure meds have controlled seizures for me (haven’t had any since being on the meds). I know everyone is different. I echo everyone’s adoration and admiration for you and what you have done. Mostly, I wish you controlled symptoms and joy and time. XO Lisa
Thinking of you and your family … hoping all goes well with the testing and even though it’s a cliche by now, truly wtf! Love to you.
My god, Beth, what an insane roller coaster. But I am thrilled to hear you may not have lepto mets, after all. Sending you and J and the kids lots of love and hugs. Praying the additional lab tests come back negative for lepto! ; )
FYI, I have a good buddy (I believe I introduced you via email) down in California who went ahead with an ommaya and is actually doing amazingly well. She’s had two weekly Herceptin intrathecal infusions so far, in addition to her normal chemo (every 3 weeks). She’s even been able to work a little bit (she has her own business).
Thanks so much for posting an update. I know that writing right now is probably a heavy lift. Hope the cough subsides, the seizures disappear and the new therapy gives you LOTS MORE TIME. Love you lots. Hate cancer’s fucking fucking guts. Always.
Awe, I am that buddy! XOXOXOXOX to you both! Lisa
Best wishes from UK Beth x
You don’t know me, but I know you from your blog and Twitter. You have done enough work for us. More than your share. The work is for the rest of us to do.
I agree, well said.
Hugs. & know we love and support you from afar. What a roller coaster! Sorry this sucks so much. Thanks for update- we’ve been thinking of you lots! Booked a flight to D.C. For October. Quick trip- but glad to go to the “homeland!”
Thank you for your clear and concise summary. It helps to understand the steps and process that may lay ahead for many of us, although we are all on our own road.
That being said, WTF doesn’t even cover what has happened. I so hope it is not lepto mets. My love to you, and prayers to who/whatever.
If you have the chance and interest, listen to Ed Sheeran’s version of The Parting Glass. It is a very old Scottish/Irish tune, just beautiful.
Barbara Bigelow recently posted…Heart
I don’t have the words. You have been a true inspiration for me. I have written so many things and deleted them, I don’t want to upset or insult you. Please know that you will be in my heart, my mind and my prayers, as will all the folks suffering this horrible disease.
Love you. I hope that among all the fucking up, 2 things are true:
1) you do not have and won’t get leptomeningeal metastasis
2) the USPS didn’t lose anything
Did the USPS send something that came with dry ice? Because, it didn’t say who it was from…
No, it was a USPS postal … whaddaever the flat-rate packaging is called, but not Express. I can’t find the receipt so can’t track it. Bleh.
I think of you every day. Thank you for sharing what is going on with you. Love you much.
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