Ruthie

Ruthie was a successful litigation attorney before seizures, brain cancer and multiple brain surgeries caused her to reevaluate many of her assumptions about life.

It all started with strange tingling sensations in my left leg. I ignored them, assuming I had pulled something in yoga or working out, which I was doing four or five times a week then. But while I was on vacation with my girlfriends and Patrick, my wonderful, loving husband—the only man with 5 strong-willed, opinionated women—celebrating my 34^thbirthday, I had to stop in the middle of a walk on the beach. My leg just felt so strange. I couldn’t walk a step further. After that, I noticed the sensation more—it seemed to be getting more intense and more frequent. During these episodes, I couldn’t run to catch the bus or subway, as I so often did. And, once when my boss asked me to come to his office, I told him I needed a minute. I couldn’t get up from my desk.

Taking Action

Clearly, I couldn’t keep ignoring this despite thinking, “I don’t have time to go to the doctor!” So finally, I made an appointment with my GP. She treats both of my parents and knew that Multiple Sclerosis (MS) runs in my family. When she told me she was ordering a brain MRI based on that family history I absolutely lost it. All I could think of was my future as an MS patient.

My dear Auntie back home in Ireland was battling MS for as long as I could remember. She was one of my heroes. She had an amazing, loving husband, three brilliant children and traveled all over Europe despite her limitations. And boy, was she feisty! All I could think of was having those same horrific limitations and the pain my aunt dealt with most of her life. I was also worried about what it would mean for Patrick and my family. (My aunt passed away shortly before Christmas in 2018. I still deal with my guilt about not visiting her as often as I should have, a guilt I discuss often with my cousin, her daughter.)

This Is How It Ends

The MRI was scheduled for the following week, so Saturday I went to get the preparatory bloodwork done. That was the last time anything went as planned. On Sunday, I was sitting in a nail salon when I had a grand mal seizure. I was aware something was happening—my leg started shaking and my whole body was convulsing—but then I lost consciousness, coming-to while being rolled into the E.R. by the EMTs, not knowing my name or my birthdate. That was when I literally thought I was going to die. I had this strange calmness. And I remember thinking, “This is how it happens, this is how it ends.” Then I lost consciousness again.

The fear came when I regained consciousness the second time and realized that I was still alive but sitting in an E.R. triage area all alone. I started crying hysterically, screaming at the nurses, “Where’s my husband? Call my husband!” Luckily the nail salon knew a friend of mine who was able to reach my husband and parents. When Patrick showed up, it was truly like a scene out of a movie. He was in a total panic, pulled back the curtain of the triage area and had this look on his face of utter shock and fear that I’ll never forget. 

My parents and one of my best friends also came with her (now) husband plus her dog, Val, who I’ve loved since he was a pup. Val is a trained therapy dog, and we have such a connection. (I get LOTS of puppy kisses whenever he sees me!) But he would not come near me that day. He knew something was very wrong. 

Silent Tears

Then, the neurologist came in. I remember that moment so vividly. The doctor made sure everyone was “family” so that he could discuss my case in front of my entire crew. He told me that I had undergone two scans of my brain, although I have no recollection of undergoing either. Then, he put his head down, looked at the floor and stated, “There is some kind of lesion on your brain, and it has to be removed as soon as possible.” When I asked what that meant, he said, “There is nothing else we can tell until we remove it. We just know the size and location.”

Everyone was silent. What had been a loud, boisterous bunch were all now speechless. I know they had pumped me full of meds, which actually helped to numb the pure and utter shock of what I was hearing. Then the tears came! Mine, but also even the men, all extremely strong who wouldn’t typically show that kind of emotion openly, had tears in their eyes. 

A Little Bit of Brain Surgery

Fortunately, I was able to get an appointment with a top neurosurgeon at one of the top cancer centers in the country right away. From the moment I met him, I adored him. He was dressed well, not in a white coat, which I find so intimidating, and sat beside me. Casually, he sat back with legs crossed and said, “So, you are going to have to have a little bit of brain surgery.” I had been crying hysterically, but he made me hysterically laugh!  He was so calm about the whole thing. 

Right away I knew, Yes, this is my doctor!”  He brought me out of the darkness, from the sense that life was ending, to being able to laugh at the absurdity of it all. That allowed me to be myself again. I am a lawyer. I know how to analyze issues, how to weigh the options, make decisions, work hard and put up a fight. And that’s what I did. Wiping away the tears I asked, “Okay, what do we need to do now? How do we fight this?”

Not Good News

I had my first brain surgery in April 2014, a craniotomy. Brain surgery gets its reputation of being hard for a reason. In order to access the tumor, they have to cut through the skull, which just adds a layer of complication. They did a total resection, taking out the tumor and stitching me back up again. I was in the hospital for three days, discharged and returned about a week later to receive the pathology. It was NOT good news! 

I was diagnosed with a primary (meaning it was only in my brain) grade 3 (meaning fast growing) anaplastic ependymoma. Although all brain cancers are considered rare, my type accounts for less than 2% of all brain tumors. It is also known to be particularly aggressive and usually identified in children. My neurosurgeon was honest, and warned (only after my father asked—frankly, I didn’t want to know any kind of statistic) that the tumor was likely to recur. Fantastic!

After a month to recover physically from surgery, (I am STILL trying to recover emotionally and mentally) I started six weeks of radiation treatment. Monday through Friday I traveled across the river from New Jersey to Manhattan, by bus and subway, by myself, for a total of 30 treatments. It was my new “job” that didn’t pay, but rather cost me so very much. Yet, it was my routine.    

High Anxiety

When treatment ended, they gave me a one month “vacation” (the hospital’s term for it, not mine!) That was the worst and was no vacation at all. My anxiety was so high. During treatment, I had a set schedule and was busy every day. I also met with my radiation oncologist and her nurse once a week. I felt I had regular interactions with my team. But without treatment, all I could do was focus on the cancer. I was calling my neuro-oncologist at least once a week. 

Every little sensation, I assumed something was wrong and that I was having another seizure. As scary as a brain tumor and brain surgery may seem, I was actually more scared of a recurrence of the seizure than anything else. A tumor can be controlled by surgery and/or a regular treatment regime, which is scheduled, but you have no control over when or where a seizure could happen. What if I had been driving when that initial grand mal occurred? 

Most days, I just sat in our apartment alone. My husband had to go to work every day. But I was so fatigued that sitting was about all I could do. I did not understand true “fatigue” until radiation. It’s not just being tired! It’s the inability to get from the couch to the bathroom without nearly fainting because your entire body is so weak.

Getting My Life Back

After a follow-up MRI, which was clean, my neuro-oncologist sat me down and said, “We need to take care of you physically and emotionally.” Not all doctors are like that, but she recognized that I needed that mental health support. She referred me to the counseling center at my hospital. I’m from a very traditional Irish family that thinks seeing a psychiatrist means you must be “crazy.” It’s such a stigma to seek out mental health support, but I think it should be a requirement for all cancer patients. Not to mention family members and caregivers who go through this too. We all suffer PTSD from this traumatic experience.

Gradually, things began to normalize as much as they can after such a physical, emotional and mental trauma. I started physical therapy to recover from some of the neurological deficits on my left side where those initial tingling sensations, which I came to learn were actually mini seizures, had begun. I was working out again four or five times a week, feeling more like myself and going for repeat scans, which all came back negative. In September, I went back to work part-time, but was scared out of my mind. What if I had a seizure on the subway and everyone ignored me assuming I was a homeless drug addict or something? It was freaky, but I did my best to get-on with life, my “new normal”.

Lurking in the Shadows

Then, in February 2015, an MRI showed “something.” They weren’t sure at first if it was a recurrence or “treatment side effects/radiation necrosis.” I spent months in limbo, going back for repeat scans while they looked to see if anything further developed.

So many patients know the term “scanxiety.” It is real. It is horrific. Some patients wait a week or longer to get their results. Not this girl. My doctor knew I’d probably have to be hospitalized if I had to wait that long for my results. I get mine the same day as the scan. Still, for several months I had no idea if there was yet another tumor sitting, growing, attacking my brain. My neurosurgeon’s nurse and I came-up with an inside joke, rooting for “Team Necrosis” vs. “Team Recurrence.”  Well, I’m both a NY Mets and Giants fan, so I’m accustomed to losing. Turns out “Team Necrosis” lost. Figures.  

By June, they were certain it was a recurrence. I was utterly devastated. By coincidence, I was actually in a support group for young adult cancer patients when I got the call that the cancer was back. I feel sorry for anyone else in the group that day that wanted to talk as it became all about me and my recurrence! 

Nothing Superficial About It

My doctor assured me that the tumor was “superficial,” meaning it was really just on the surface, but there is nothing superficial about brain surgery. As if one brain surgery wasn’t enough, I was now having to undergo my second craniotomy.  

Since I was working and had a pretty full caseload, I needed to prep every single one of my files for someone else to take over. We had no idea when, or if, I’d return to work. I’m so thankful for the kindness of one of the senior partners who helped me so much to prepare everything. I’ll never forget  leaving my office for the last time with a completely empty desk. Even when I started at the firm, my desk was already full of work awaiting me to tackle!

I spent another three days in the hospital having my skull opened up, tumor resected and being stitched back together. The pathology report confirmed it was indeed a recurrence. Chemotherapy is not a part of the standard protocol for my type of tumor.  It’s just surgery, if you’re fortunate enough to have an operable tumor, and radiation. However, since mine had recurred in less than a year, my hospital decided to give me five rounds of an immunotherapy drug, Avastin, and five high-dose, stereotactic radiation treatments to try to knock it all out.

By September I was done with treatment, but I couldn’t go back to work. Instead, I went on disability and likely will never return. I had achieved so much: first I had received a scholarship to undergrad, then one to law school as well; I had passed two bar exams; and I had a successful career in an extremely tough profession, especially for a young woman, in New York City. Then, it was all taken from me by cancer. 

Amazing Life

Later that year, I had some pain and redness on my scalp where they performed the surgery and beamed the radiation. Then, I suffered a five-day migraine. Yet, each time, I was admitted overnight for observation and sent home. No infection. No definitive sign of any issues. Time to get on with my life.

Not so fast. In January 2016, I started to have some sensations in my left leg again, and my memory started to decline. The doctors signed me up for a formal cognitive evaluation and to get occupational therapy, but no one was particularly worried about anything.

Well, they were the experts so if they weren’t worried, at least I would try not to be. In fact, in March my best friend and I went back packing across Costa Rica, fulfilling a dream to visit the Sloth Sanctuary there. I tried surfing for the first time and even rode a wave my first attempt! Life was amazing, or so I thought.

Am I Blue?

Just after returning from Costa Rica, my scalp felt “weird.” The surgeries were in a place that I really couldn’t see without a series of mirrors, so I asked my husband to take a look. He said it was an odd color, bluish, and took a couple of pictures that we sent to the “team.” I got a call back right away to report to the urgent care center for immediate admission to the hospital. They suspected I had an infection and a wound break-down. That “bluish color” was my titanium plate, which was actually exposed, suggesting just how badly the wound break-down was around my surgical site. 

They scheduled me for surgery once again, which required coordination with infectious disease experts so that my neurosurgeon could clear out the infection, and a plastic surgeon who could create a skin flap to cover the wound. The good news was that the MRI showed no change from the prior scan, suggesting there was no evidence of cancer. They sent me home to get a good night’s sleep and to prepare for what would be a long surgery and extended recovery. But no one expected just how long either of those would be.

Scarier Than Brain Surgery

In the middle of the night I awoke feeling like I had a seizure coming-on. I was yelling at my still half-asleep husband to call 911 and to get my emergency meds, but then I lost control of my entire left side. I was conscious, but unable to speak. Literally, all I could do was snort and drool. NOT cute! My husband brought me to the hospital quite a few hours early for my surgery—probably the only time I was ever early for anything! It turns out that the steroids I had been on to reduce swelling in the brain had controlled the seizures. However, I had been tapered-off them prior to the surgery without my neurosurgeon’s knowledge, so BAM. This second grand mal seizure confirmed for me that there are indeed some things scarier than brain surgery.

This next surgery was massive. It took them 12+ hours to open me up again, remove the titanium plate, clear the infection from my brain, harvest a section of skin from my abdomen—creating a massive scar and rearranging my belly button in the process—and then attach it to my scalp, reconnecting blood supply as they went. Poor Patrick, waiting with my loving, but neurotic parents, who can NOT sit still, for over 12 hours to hear that I was okay. I was out cold, but he sat there on edge for hours and hours. 

Waiting and Watching

I was in the hospital for a week this time, with daily doppler testing to make sure the blood supply to the skin flap was working and that my body wouldn’t reject it, daily tinkering with my medications and PT and OT sessions. Finally, they discharged me on Friday the 13^th. I never thought that was a good omen!

The mobility and strength on my left side continued to decline despite ongoing PT and OT. I was forced to wear an ankle-foot-orthotic that made any footwear other than sneakers out of the question. Between the belly scar, the brace and the skin flap on my head that would never grow hair (but now had the freckles from my stomach) there was no denying that I was a brain cancer patient. I suppose I should have been happy to be alive given all I had been through, but honestly, I was depressed.

It seems unreal but unfortunately, the next year things got even worse. I had to have yet another surgery and this time they found three different types of bacteria in my skull bone necessitating a month of 24-hour IV antibiotics that were so strong they turned my skin grey. While still hooked-up to the portable IV machine, I got the call it was time to say goodbye to my brain cancer partner in crime, one of the most amazing, strongest women I ever knew, who I loved like a sister. Nothing compares to the heartache and grief I experienced losing her. 

Rest in Peace

When I entered her room, her eyes were closed. At that point, she was unable to move or speak. As I sat at her bedside holding her hand I started rambling. I had a St. Jude card, the Catholic patron saint for healing, which I continuously rubbed against her hand with my left as I held on with my right. I began saying “This was never supposed to be happening. We were gonna beat this together! Why? Why you?” Miraculously, her eyes opened, and her hand began to close into mine. 

As I continued my babbling questions, she started coughing. At first I freaked, thinking I needed to get a nurse. Then I realized she only coughed when I asked rhetorical questions. I put my hand against her chest, and said, “You’re trying to answer me. Don’t strain, I know you’re still here and you hear me.” Although I continued rambling, she never coughed again. As I prepared to leave I kissed her forehead noticing small drops of tears in the corner of eyes. Her husband said he had never seen that. She was still there. She heard every word.  

Although I knew I would never see her alive again on this earth, I left with an immense feeling of peace. She succumbed to her cancer on May 9, 2017. But, I know without question she continues to watch over me. She is no longer here, but she is forever with me. I see signs of her in some of my darkest times. Some people may not believe in that, but I know it’s her. (For example, literally as I wrote these words, out of nowhere my device stalled in that lovely “spinning circle” mode. I just laughed and said her name out loud. Forever the prankster!) Rest in peace, my angel.

Never Easy

During the next few months, I was hospitalized on four separate occasions for uncontrollable seizures, and of course had to do acute and ongoing rehab to recover from the damage those seizures caused to my mobility. I gained 20 pounds on the steroids they gave me trying to control things. Then, around Thanksgiving, an MRI seemed to suggest that the cancer was back, and I spent the rest of the year sending my records to the top neuro-oncologists in the country trying to get an answer. No one seemed to know, and I just had to wait and see what the next scan would show. 

Once 2018 rolled in my January scan showed that the suspect area had shrunk, suggesting it was just plain old necrosis from the radiation rather than a recurrence. While that was a relief, it didn’t mean things would be easy. Since then, I have had three more surgeries and been on and off Avastin. I continuously struggle with seizures. I’ve been in and out of rehab, PT, OT, and even been homebound for a while when I was too unstable to leave the house. The radiation they gave me back-to-back with the first two occurrences destroyed my bone and tissues. Plus, the Avastin, which is helpful for disease control, interfered with healing. At this point, I’m not sure which would be easier, another tumor or more necrosis.

Once Too Often

Along the way, my original neurosurgeon retired. He had seen the inside of my brain once too often, and practiced for about 50 years so he deserves his retirement. I was fortunate enough to find another incredible neurosurgeon who actually trained under my original one. In December 2019 he performed a burr-hole craniotomy to drain one of the two necrotic cysts that remained in my brain. 

Those cysts continuously fill-up with fluid causing swelling inside my brain, which then wreaks havoc on my entire body. For example, the fluid and swelling bring on more seizures, lead to horrible migraines, and cause me to lose balance, which is already a problem on a good day. Thus, I fall. I lose all use of my left hand. My fatigue gets even worse. And on and on and on. There was some good news, finally. During the surgery they extracted both fluid and tissue, which they were able to test, determining there was no cancer in my brain. Hooray! But, the joy would not last. Sadly, it never does.  

Still Not Out of the Woods

This wonderful year of 2020 began just about how the rest of this horrific year has gone. My neurosurgeon along with a plastic surgeon and general surgeon worked together to place a shunt into the larger of the two cysts in my brain. That shunt permanently drains the fluid down into my GI area. Following that seventh surgery, I spent one week in ICU with another 2 ½ weeks in in-patient rehab to attempt to build-up my strength and regain more mobility. I even spent my 40th birthday in acute rehab, but still threw a party!

I came out of acute rehab thinking I was really going to be okay this time. I’d had seven brain surgeries in less than six and a half years. Surely that would be the end of it. Then, the pandemic hit. I saw photos of my doctors in NYC volunteering on the frontline, sent messages to all the healthcare workers I know and care for dearly, and heard first-hand accounts of what it was like on the frontline. I could not cope and became riddled with anxiety and avoided appointments I should have gone to. 

Then, in May the metal clips that were used during my 2016 skin graft, to hold the blood vessels in place that were keeping my skin flap alive, began trying to pierce through my skin close to my ear. Of course, they needed to be removed. Lucky me! Another encounter with my plastic surgeon. There I was, once again on August 24^th, lying in the operating room awaiting that magical anesthesia to take me off to La La Land. 

That was a pretty quick surgery. But literally the next day I began to feel irritation in the nerves on the right side of my face, creating twitching, pain in my jaw and cheek area, and facial paralysis. I look like poor Quasimodo.  

Processing and Coping 

Now comes the REAL kicker. Although I do not have cancer in my brain, I’ve just learned that my cancer has recurred in lymph nodes in my neck and in the parotid gland, one of the glands that control the salivary system. Oh yeah, and the facial nerves wrap all around it too!  It’s practically unheard of and truly so rare, the hospital is even questioning its own pathology reports. So, once again, I sit here and await all the experts to come-up with some kind of treatment plan.  

Before this latest news, if someone were to ask me, “How do you cope with all you’ve gone through?” Typically, I’d say, “It was just the cards that I was dealt.”  I’m still trying to process what is happening right now, but today I’d say, “If anyone knows a good voodoo doctor who can remove the curse that’s been put on me, please give me that doctor’s number!” 

A Full-Time Job 

Sometimes I feel that it’s almost harder on the caregiver. Poor Patrick. I don’t know what I would do without his support, but he’s one of the strong silent types and is not the kind of person that will go to a support group. Men always want to fix things. Not being able to fix what is going on is very frustrating for him. He was already predisposed to anxiety and panic attacks, but he really suffers now, afraid for what might happen next to me. He has no control over what goes on in my brain. I don’t even have control over that! 

It hasn’t been easy financially either. Thank goodness he has a good steady job with excellent insurance coverage. We sure have used it. I’m the sort of patient that breaks the insurance bank! When I went on disability, my income fell to 60% of what it had been. And it took a while to get all that sorted out, so there were about six months when I had zero income. Cancer is its own job. You have to manage so much. The appointments, the calls to insurance, the third-party insurance administrator, figuring out what I actually owe, appealing absurd decisions about coverage, etc. etc. It’s a full-time job with very few benefits and not a penny in income!

Tiresome Truths

My mobility issues continue. Despite having one of the leading seizure doctors in the country caring for me, given all that’s happened to my brain, I will likely suffer from seizures the rest of my life. Luckily, they are focal, and I do not lose consciousness. They present in my left arm and hand, so after a seizure the use of my arm and hand is seriously limited. My abilities fluctuate tremendously from week-to-week. 

Despite my best efforts to avoid it, I am off-and-on dexamethasone to try to control the brain swelling. That means my moods are all over the place. One week I will feel so good I think I can leap tall buildings, and the next I am crying and have to eat pasta at every meal and then I’m back to being full of energy and angry. In the grand scheme of things, these are small issues, but it does get tiresome.

Finding My Tribe

I’ve had to give up so much, and my world has gotten smaller and smaller. Not surprisingly, I struggle with depression, insomnia and mood swings. I try to be as positive as possible while recognizing that it’s okay to grieve the things I can’t do, like my ability to be independent. Having to ask for help is a hard thing for me to do. I hate it and hate delegating. It’s my personality to be in control and to do things myself. 

However, life throws you curve balls. Boy, did I really get thrown some recently, and I’m only 40 years old! Yet, this is the life that I was given. Yes, I am that person who believes there is a purpose in all of this, one I may never know in this lifetime. So, I have to make the best of it and be as positive as I can.  

I do a lot of volunteer work advocating for other patients, fundraising for brain cancer research and sharing what I have learned along the way. Helping to lift others up not only helps them, but also helps me. In fact, it’s a means of helping heal myself despite all the pain I’ve endured.   Plus, through my advocacy, I’ve met some of the kindest, strongest people on earth. Connecting with others, finding my tribe—the people who have been through it, who really get it—has been a big part of what’s kept me going through the constant ups and downs. Our loved ones love us and empathize but haven’t been in the trenches. Having people around who have been there, who understand on a visceral level what it’s like to have cancer and suffer through those dark days, makes a huge difference. 

Upside Down and Inside Out

Sometimes I hear women my age complain about finding a gray hair, or about needing their nails done so desperately. I get it. I WAS that girl back in 2014. Now, I would just be happy to have a full head of hair no matter the color!

I recently met a young man at physical therapy who was wondering how I managed to stay so positive after seven brain surgeries. I told him that I grieved for what I have lost but learned that it’s okay. Most days I can still walk around and still have full cognitive function, although sometimes my memory slips a bit.

Before the recent news, I would say that in the grand scheme of things, I’m doing really, really well. I do my best to constantly think about the positives and focus on the involvement that I have with multiple charities, helping friends who have their own non-profits, using my story and what has happened to me to make the best of it. Yes, cancer turned my world upside down and inside out. But what else can you do? I just hope that I can continue my fight and stay the strong, fierce fighter my parents raised me to be. Fighting Irish Forever.

To read more of Ruthie’s story and stay up to date on her progress, you can check out her blog, Brain Cancer Babe.