Elizabeth McSpadden

Palliative care — which is not end-of-life care, unless someone chooses it to be — is a supportive care system to help with cancer symptoms and manage the lifestyle that is a part of this diagnosis. This includes all the problems, challenges, issues and questions about your diagnosis.

My experience has been amazing with my palliative care doctor. I wish I had known sooner about how amazing this extra VIP service is; If there is one VIP service or perk, call it this.

I have metastatic breast cancer, and eventually sought out help because my back pain was awful after undergoing a lumbar puncture. I also had 

 in my colon. Palliative care not only suggested various pain management options, but also gave me fantastic options for when my colon needs help, such as senna (an oral drug to treat constipation) plusSmooth Move tea. The palliative care team gave me instructions on how to best use these to treat my issues.

The other amazing part of palliative care is that when I was hospitalized, the oncology team as well as staff knew I had a palliative care doctor, so they made sure to contact her and her staff in case I needed pain medications or other things. I didn't have to ask or vocalize, it was just a given because at the hospital system, if you are part of palliative care, they make sure to respect your oncology needs.

I learned that palliative care can give you pain management, help with nausea, depression, anxiety, appetite and even just the overall management of life with cancer. If cancer is just overwhelming, they can help assist in figuring out which parts to make easier and break down. They understand all the elements of cancer and how they can impact people’s lives. In my eyes, they are superheroes to help us while we battle these wars.

I have to say I had no idea what this road would lead to, nor did I think palliative care would change my oncology needs for the better. Yet here I am telling many of my cancer friends it could help them and am blogging about it to all of you. It's a perk worth advocating about and sharing with the world. Mainly, I hope someone reading this can get help and relief. Cancer is so hard already, and we all need as much help as we can get.

It's been about six months since I started with palliative care, and I am so grateful for them. They have kept me well stocked in what I need to feel more comfortable, helped me find other doctors, voice concerns about some side effects to my doctors and continue to help manage my network of 20-something doctors.

At the end of the day, we all need help and support — which is exactly what palliative care is.

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Articles

After seeing how palliative care helped me through cancer, I now advocate for these services to other patients.  

Palliative Care: The Superheroes of Oncology

Four months ago, my headaches became increasingly worse. I advocated for a brain MRI, which showed brain tumors in the dural cavity of my brain. However, within a short time frame, I was diagnosed with leptomeningeal disease due to all ofthe symptoms I was having. 

Fast forward to now, where my brain tumors have shrunk and I've had several rounds of radiation, I'm still left with many side effects and carefully watching for new changes.

My care team has expanded to multiple neuroncologists, a neurosurgeon, radiologists, an ocular oncologist and an ear, nose and throat (ENT) doctor. Any new change in my brain symptoms, from facial paralysis, vision loss, hearing loss, taste, numbness, tingling, headaches, falling or double vision, are all side effects that I need to monitor and speak up about. My brain has become the priority (as it should be) to focus on, yet I am not used to advocating for it. Here I am expected to be so mindful of any and all changes. 

Brain metastases and leptomeningeal disease have taught me a lot about taking days slower and allowing myself to need more rest. Steroids have been a pain but helpful and I hope maybe one day to be off them permanently.

This brain disease has also shown me to be extremely grateful for my support system. Without Team Sunshine, I'd be lost, unable to get to my doctor’s appointments and would be without groceries and meals. Asking for help has become essential in surviving the last few months. Strangely, I've gotten better at it, and I'm not ashamed of needing people. I joke how I am 36 going on 85 most days, but honestly, it's a pretty true statement. These past six months have been such a rollercoaster of symptoms that I've turned into needing so much help.

To me, it's truly scary how a brain disease and three brain tumors can destroy independence within 24 hours.

I'm looking forward to eventually getting a little of my independence back, maybe someday, even all.

My metastatic breast cancer has caused metastases to my brain, so it's important I advocate for my brain when symptoms arise.

Advocating for My Brain After Metastases from Breast Cancer

When I started having severe headaches back in November 2023 that were not my typical kind of migraine, I became worried. These headaches were on the side of my head and at the front of my skull and they lasted for days. I spoke to my oncologist about these headaches after five days of them not going away with my migraine meds, and she ordered a brain MRI.

Thank goodness I spoke up because it revealed that I had two spots in my dural cavity, and eventually, a third spot that grew near my left ear. After getting a neurooncologist, I endured three rounds of gamma knife to my brain. I also had testing done for leptomeningeal brain disease, a deadly aggressive brain disease. My spine MRIs and spinal fluid both showed negative for it, but it still didn't clear me.

What is leptomeningeal disease? It means it has spread to your spinal fluid and leptomeningeal areas. Side effects are nausea, confusion, vomiting, double vision, seizures and so on. It’s a deadly disease and when left untreated, it’s a scary thing to beat.

After my gamma knife radiation was over, the left side of my face drooped, and I was left with facial paralysis. My cheeks and eyes were numb and I couldn’t smile very well. I called 911 not knowing if it was a stroke or something else and got admitted to the hospital for three days around Christmas.

That was an incredibly hard time in my life — being hospitalized at Christmas — and having my face droop. I also knew that my brain was just not working properly. While being hospitalized as a neuro patient, I underwent further scans (brain MRI) and additional steroids to help with facial swelling.

Once I was released from the hospital on Christmas day, I spent the rest of 2023 getting chemotherapy (Trodelvy [sacituzumab govitecan]) and meeting with my neuro team to understand what was happening with my face. My team believed (and still believes) that although all of the tests showed no evidence of leptomeningeal disease, my facial issues of drooping continued. Now that third spot near my left ear has begun to show early signs of leptomeningeal disease.

I don’t have a textbook case of leptomeningeal disease, but my doctors are concerned that everything is starting to point in the direction of that disease. So to treat this, I got five more rounds of radiation to my face and ended up partially losing hearing in my left ear. I also got an Ommaya brain pod surgically placed, which I will have treatment directly put into my brain. This will avoid my veins, and act like a normal port but will give me fewer side effects.

The treatment will either be Herceptin (trastuzumab) or Herceptin plus Perjeta (pertuzumab). I'm waiting to find out whether I can qualify for a clinical trial for HER2-positive status of my CSF fluid. Either way, the Ommaya pod will be utilized, and I will get this treatment on top of Trodelvy.

Overall, three months ago, I was extremely scared and nervous about my brain metastases. Now I feel a lot more informed having a dedicated team on my case.

It is wild to me to know that it’s not all black and white for leptomeningeal disease. For me, I’ve become so involved in learning about the brain, my side effects and what part of my brain function I am losing.

I still work full-time and want to be able to continue to do so. Thankfully, my support system and Team Sunshine have been immaculate in providing love, care and help.

When I found out I had a metastasis to my brain, I felt so uncertain, until I learned more about leptomeningeal disease.

The Uncertainty of Brain Metastases and Leptomeningeal Disease 

I’ve had stage four cancer for 5 ½ years, and it never dawned on me to name my tumors or cancer. Personalizing cancer didn’t seem helpful at any point. I created a cancer support name called Team Sunshine because it helped me feel supported and loved. I felt more like myself during my first and second years of cancer. After that, my cancer stabilized, so I didn’t need as many coping strategies like naming my cancer tumors. However, I knew folks who had done so, for example, calling their breast tumor “Norman.”

Fast forward to last month, when I found out I have a total of six active tumors between my brain, liver and right eye. Two in each organ, which we found by me advocating my symptoms and asking for scans, for the doctor to investigate and so on. Still reeling from the total shock of the progression to my organs, I hadn’t found a way to deal with the news fully. I felt I was just “surviving” and getting from Point A to Point B again, which was the same as when I first was diagnosed with breast cancer. This didn’t seem as healthy to me, and I didn’t want to crumble to depression around the holidays. My therapist has been amazing in trying to help with all that I have going on with all of my doctor appointments, scans and chaos. I kept trying to write and find the words, but I still at times felt stuck, and couldn’t fully process my feelings.

A few family friends urged me to keep things “simple” for the holidays like decorating and giving myself grace. However, the only thing I kept thinking was that I just wanted to curse my tumors, swear at them and just call them a bunch of names. With this idea, I found a little joy, and the more I focused on the idea of “kicking them to the curb” and yelling at them; it would give them an identity. Thus, it began the hunt to name them with evil personalities after evil characters. I asked friends and family for the best evil characters they could think of, and I’d collect them, and draw names out of hat.

This brought a lot of joy because the name submissions were positively so exquisite. The creativity and responses really showed where people pulled their submissions from. Hades, Jafar, Napoleon, Stalin, Hitler, Mao, Sarun (evil eye from Lord of the Rings), Dracula, Dr. Jekyll and Mr. Hyde, Ursula, Gaston and so on.

The final names are: Brain- Voldemort and Putin; Ocular Right Eye - Cruella and Hannibal Lecter; Liver- Scar and Ivan the Terrible

Brain radiation started on Dec. 14, finished the week of Dec. 18 and chemotherapy will resume on Dec. 22. How cool will it be to say, “I’m off to zap Voldemort and Putin today!” and then when chemo resumes, I can say “Were kicking Scar and Ivan the Terrible to the curb. Watch out!”

Then when I have my scans, hopefully we can say “They all died!!!! Or at least a few of them!”

I didn’t think creating personalities for these tumors would help me, but having such severe side effects from the tumors, and knowing the pain they’ve caused, and what they’ve taken from me, it does help. It has made a difference. My battle cry is so much stronger — my fight to push harder and stay on the path is so focused. My attitude is pure might, and I’m so much less scared. I’ve put my fears into fighting all of them, and finally the weight of this diagnosis feels a little lighter. For reasons I still don’t understand, giving characters and personalities to these tumors really helped with some of the stress and anxiety of the progression into my organs. It is something I have feared of happening with my stage four breast cancer, knowing that once its in my organs, it’s a more severe prognosis. Tissues can only be radiated so much, and tissue is more sacred.

To Putin, Voldemort, Cruella, Hannibal Lecter, Scar and Ivan the Terrible: with every fiber in my soul and being, with the help of my fantastic medical team at Northwestern and Mayo Clinic, with the support and love of Team Sunshine, all six of you will be kicked to the curb, annihilated and cursed. You are hated, unwanted and wished by many to never return!

To all of you reading, I hope this article brings you joy and a few laughs.

With love, grit, grace and gratitude from Team Sunshine

I've found a little bit of joy in naming the six active tumors in my body. 

Elizabeth McSpadden

Palliative Care: The Superheroes of Oncology

Advocating for My Brain After Metastases from Breast Cancer

The Uncertainty of Brain Metastases and Leptomeningeal Disease

Naming my Tumors Helped Me Process My Grief

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