This post is decidedly less wonderful than my last one. I don’t even know where to begin, other to say than I saw this quote about being an octopus and would love nothing more than to hide in the shade of an octopus’ garden right now. That sounds delightful.
I really don’t have the energy to write a full blown, quality post, and also there’s sooooo much to update on since I haven’t written in so long, so I’m going to do my best to just get the information down. I drafted a post about 2 moths ago that I never published, so I’m going to pull from that and fill in the blanks and hopefully what emerges is somewhat coherent.
I guess I’ll start with the most recent, and also with explaining my complete radio silence. I have been really, really sick, for a LONG time. I came home from DC mid Feb, and by the time I recovered from the flight I came down with the flu, pneumonia, and eye infections. Then after a couple weeks of that I had about one day of feeling ok before I came down with another lung infection that has COMPLETELY kicked my ass. The other day I crawled up the stairs on my hands and feet and had to take a break half way through (one flight). Then my chest CT showed something, but they weren’t sure what, so they said pneumonia, partial collapsed lung, and/or lung tumor. Yesterday I heard that they think it’s an infection, but there is some concern about something that showed up in my bones, so now I have to follow up about that. My bone pain has also been escalating, so hard not to worry about it. Headaches/nausea getting worse too, so likely will have another brain MRI in my near future. In the meantime, I’ve spent the majority of the last month in bed or on the couch feeling like crap.
Before I got sick, I had a full spinal MRI at Stanford, which meant being in the MRI machine for almost 2 hours. That’s a really long time to be in a small claustrophobic tube. Stressful, and just really no fun.
Then a couple days later I went back to Stanford all day for a brain MRI in the morning, followed by an appointment with my neurosurgeon in the afternoon. The MRI results were actually good. My radiation necrosis is stable, which means that the treatment (Avastin) is working, and there were no new tumors, which is always a win. Still, it’s always tiring and stressful spending that much time at Stanford going from scan to appointment and just being at the cancer center all day.
The next day I had my IV treatment (herceptin/perjeta) in the morning, followed by a PET/CT scan in the afternoon at the hospital. I am never, ever agreeing to a scan and treatment on the same day again. It was so freakin brutal. I felt like poop to the point that I couldn’t really function. I was so beyond exhausted that I repeatedly involuntarily passed out (in public), and people had trouble waking me. I think that happened 4 times throughout the day. Results of the scan were good – stable, no new tumors.
But bear in mind that all these scan results are now 2 months old, so essentially obsolete in the the world of MBC. I’ll probably be repeating all these scans soon.
After my infusion I went back to Stanford to see my neuro-oncologist. It was basically a follow up appointment to discuss what to do from here. We are going to try to slowly taper my Avastin down and see what happens – if the necrosis starts growing, we’ll bump it back up. I have to stay on a low dose of steroids because at this point my body has probably stopped producing any of its own like it’s supposed to. And another super discouraging conversation about all my symptoms.
I walked out of that last Neuro-Onc appointment sobbing. I felt trapped in a maze of pain. That might sound dramatic, but it’s honestly how it feels. I feel like I’ve been lost in that maze for over a year, ever since brain surgery, with no way out. I’m tired. And to be honest, I’m jealous. That’s a hard one to admit, because it’s not the most gracious of emotions, but it’s true. I’m jealous of everyone else who just gets to live their lives. Jealous of all the people my age whose definition of a bad day is getting stuck in traffic on the way home from work. I understand that everyone’s problems are relative, and I genuinely don’t judge anyone for being upset about things like traffic. If that’s the biggest issue in your life, you have a right to be upset about it – and I really don’t WANT you to have bigger problems. It’s just that I would give anything to be in that position, and I am so, so jealous, because I’m so so tired of facing these enormous problems every f-ing day. So after yet another appointment where it was explained to me that I likely have all these symptoms simply due to the trauma of brain surgery/radiation, and that the doctors don’t necessarily know how to fix it – which means I just have to continue to live with this pain and with all these symptoms – I walked out of the building with tears streaming down my face as I repeated over and over again to my mom, “I’m so jealous of everyone else. They don’t realize how lucky they are. I’m so tired.” And my mom reached her arm around me and pulled me in towards her and held me up as I crumbled – a gesture that I would have pridefully pushed away a few years ago, but one that I gratefully accepted that day, because without it I don’t think I could have kept walking.
There’s also been far too many big losses in the MBC community lately. Beautiful, kind, amazing women who had so much life to live and who deserved so much more.
Just please, be grateful. That’s all I ask.
None of this can be fixed, and I know that. I have to just accept it, and accept that this is my situation and my life, and remember that I do have some seriously amazing things in my life that I AM very grateful for. Some days I am closer to that acceptance, but on hard days, it feels like there is nothing to do except cry. So, I cry.
There’s also been A LOT of back and forth between a lot of doctors about what to do about my chronic pain and headaches. Some feel that I should stop all opioids (but with no real explanation as to why), and others think that’s a bananas idea. After many, many conversations and research and thinking, we decided to go with the recommendations of the doctors who know me best and who have been treating me for the longest, who all unanimously agree that if the pain meds help me function and give me a better quality of life (which they do), then there’s no problem staying on them.
On top of all this I am constantly dealing with side effects/symptoms (hard to distinguish between the two) that range from waking up every morning with a bloody nose to a tremor in my hand that means I sometimes can’t work my phone to intermittent double vision that requires that I close one eye to see properly, to the weight gain/puffy face from steroids that means every time I walk past a mirror I am reminded of my situation, to daily debilitating headaches/nausea. I can no longer sleep laying down, so I sleep propped up as if I’m sitting in a chair. It’s just hard, you guys – this MBC life is hard.
Many people praise me for staying “positive,” especially after reading my blog. Everything I write is genuine, but alongside all that appreciation for life is the truth that this life is impossibly hard, even when things are going “well” and scans are stable. I find it difficult to adequately express the magnitude of that difficulty to people who do not live with cancer.
I know that much of what I’m feeling is due to being sick for too long, being in too much pain, living with too many unknowns, and having too many scans and treatments and appointments in too short of a time span on too little sleep. So now I’m running on empty, and the volume on the losses and pain has been turned up to 11. I’m having trouble hearing anything else above all of that.
That said, before all this went down I did go to DC for a breast cancer fundraiser, which was really awesome. I got to meet Dr. Jill Biden – such an honor – and see all my friends in DC. It was overall a fantastic trip. I also got to go to the Pasadena International Film Festival with Bonnie and my family to watch bare screen, which was a really fun trip. I’m always so proud to see bare on the big screen, and I just had a really good time with Bonnie, Matt, Erin, and my parents.
Though the girls still help me get through everything, I haven’t been able to be around them a whole lot because I didn’t want to get them sick. But, there was one day in between all the infections when we felt pretty confident that I wasn’t contagious and I really needed a pick me up, so I called Anna to see if I could borrow Kenzie for an hour. Sometimes, when it’s just me and her, I can kind of pretend that she’s mine. So for an hour we played with stickers and crayons and drew pictures, and her giggle quieted the background noise of cancer that is constantly swirling around my head. For that hour, I could be ok.
Final thought – this week Evan and I went to Monterey with Bonnie, Shane, and Calvin for an afternoon and it was really fun. Have you ever seen a happier little boy? I wish everyone could live life with this level of joy.