Rock & Roll Mobster Girls

In 1987 I formed an all-female band with my friend Mara. We had both performed together previously in a short-lived project called aptly “The Corn Dogs.” We covered songs from the 1970s like “Wreck of the Edmund Fitzgerald”, “That’s the Way I’ve Always Heard it Should Be”, and “Frank Mills” (from Hair) to very confused punk rock all ages audiences. We had a great time doing this, but we both really wanted to do something more rocking.

Flyer from a Corn Dogs show

We put the word out that we were looking for musicians, and we were soon joined by Cathy on lead guitar, Annette on bass, and Patty on drums. I played rhythm guitar and sang, and Mara sang. Mara & I wrote songs and specialized in doing a lot of duo lead vocals and harmonies. While casting about for a name, we settled on Doll Squad which was the name of a terrible movie by Ted V. Mikels from the 1970s that was a low rent precursor to Charlie’s Angels. Great name, terrible movie.

Doll Squad 1987, L to R Helen Halloran, Annette (Billesbach) Wesley, Patty Schemel, Mara (Dralle) Funk, Cathy Watson

At this point in time, I was a frequent customer at a video store called Back Track Video. Back Track was owned by “Professor” Fred Hopkins and his business partner John Black. I would go there with my boyfriend Scott, and we would rent John Waters movies like Female Trouble and Pink Flamingos. We were awfully fond of the movie Faster Pussycat, Kill Kill by Russ Meyer, and She Devils on Wheels by Hershell Gordon Lewis. We would always end up chatting with the owners about whatever new titles they had, or just to gab about these “so bad they’re good” movies.

Me & Scott Burroughs

I told Fred that my band had just formed and we were calling ourselves Doll Squad after one of the movies he had in his inventory. He was delighted and intrigued and excitedly told me that he was going to write a movie about us. I didn’t think too much of it because people say things like this all the time and never actually do them. Much to my surprise, he actually wrote a script, then started to recruit people to be in it and work on it.

Originally it was supposed to be a horror movie involving my band (using our real band name) but each member of the band had a fictional character name (I was Lynx Lapaz). The story of course was entirely made up and ridiculous. I was to be the female lead, a woman named Diana Robinette was cast to play my best friend Blanche de Hell, and Fred was going to be our band’s manager (and then my on-screen boyfriend) Bruno Moltrock. We started to film on video tape in someone’s house, which ended up being the setting for almost all of the interior shots. At first we stuck to the script as written, but as filming days dragged on the dialogue became more and more ad-libbed. Our camera person and director was named Rick Fahr, and he filmed a lot of live footage of our band, and then started filming lots of other local bands such as Catt Butt and Crisis Party. Pretty soon the film started to morph into a weird conglomeration of live band footage, scenes that were acted out by the cast (the horror movie portion) and interviews with various real musicians, but also people who were playing characters. It was getting very convoluted and none of us were really sure what the finished product would be. We weren’t even sure it would ever get completed.

Since we mainly filmed on weekends or whenever people were free, the filming took quite a long time to complete. When it was finally finished, there was a viewing party thrown at the Annex Theater in Belltown, and both Crisis Party and Catt Butt played. By the time it came out, our band was already either broken up, or very close to breaking up. Watching it in its final form was weird. The movie made very little sense – going back and forth between real interviews, live footage, and the silly horror movie parts.

Some of the funniest and most entertaining parts of the movie were unintentional. Once scene featured a friend of mine’s car. Diana (my afore-mentioned on-screen bestie) was trying to drive us away in an old 1965 Corvair. It was a stick shift, and she didn’t know how to drive it. Rick kept on filming while she kept on killing the engine, and the car lurched forward repeatedly and kept on dying. In the meantime, our fictional “landlords” were trying to attack us from outside the car, and John Black and I were in the backseat laughing hysterically. They ended up keeping this overly-long scene (they did cut it, but it’s still pretty long) and then inserted a title card saying “15 minutes later” showing the car finally driving away.

Make no mistake, this movie is terrible. The video quality is not great, the dialogue is laughable at best, and it hops all over the place. I really thought nobody would ever remember this cinematic masterpiece, but I was very wrong. In 1995 a documentary about the Seattle music scene came out called “Hype.” I was working at the federal courthouse for the Clerk’s Office, and one of my coworkers told me she saw a rough cut of Hype and that I was in it. I went to see it at the Seattle Film Festival, and there I was on the big screen. It was a scene from Rock & Roll Mobster Girls where I was telling my dad (played by Jim Rose) about how Seattle was bigger than London in the 60s and New York in the 70s. It’s placed in Hype with no context, so I’m betting a lot of people don’t know it’s from a fictional film.

In the past ten years, I’ve been approached several times through the internet by people who either want to interview me about this movie, or want to try and buy copies of it. Rock & Roll Mobster Girls actually did have a small video release by a company called Donna Michelle Productions. I finally received a copy of it in the box from a seller on Ebay in the 1990s who felt sorry for me once he heard I never received a copy – he sent it to me for free. (By the way, my first name is misspelled on the box.) From what I hear from the people who contact me about this flick, there are a handful of people who will pay top dollar for a copy of this film. I had no idea back then that this silly film would have such a lasting impact, albeit on a very small group of people.

L to R, Patty Schemel, Mara (Dralle) Funk, Helen Halloran with copy of Rock & Roll Mobster Girls

Happy Birthday Catherine

Today is Catherine’s birthday, the first one she isn’t here for. She would have turned 53 today. We were almost exactly a year and a half apart, me being born on January 15, 1964 and she on July 16, 1965. It’s a bittersweet day as I know her suffering has been over since May 27^th of this year, but I still feel her absence.

Catherine’s last birthday, 2017

It was always painful to visit her at the nursing home, knowing that she had been living there since 2011, and every time I left, I got to go home. She used to call it “The Hovel” up until a couple of years ago. She also would never refer to it as home until a couple of years ago. In hindsight, I guess that’s how we could tell her health was slipping. Much of the fight had left her. In her final year, she spent most of her time sitting in bed, usually with a book or magazine about an inch from her face. Endlessly flipping through the pages.

I didn’t visit her at the home as much as I’d have liked to. It was a sad place, and it always reminded me of how unfortunate my sister’s life had been. In her earlier days of living there, my husband and I would sometimes take her out for dinner, or to see a musical at the Fifth Avenue Theater. On occasion, she got to see my band play, or a friend’s band. She loved those outings, and would protest mightily when it was time to return to “The Hovel.”

Her brain tumor robbed her of much of her short-term memory from her diagnosis. Only two-thirds could be removed as it was in her frontal lobe and enmeshed in-between the two brain hemispheres. This is the part of the brain that controls behavior, and she often had no filter. When we’d take her places, we often didn’t know what was going to come out of her mouth. It was often very funny, and just as often – highly inappropriate.

She had decided a couple of years ago that she didn’t want any more MRIs. I took her for one of her last ones. I always felt bad for the other patients in the waiting area because she would raise holy hell whenever they had to give her an IV or any sort of injection. Yet when we’d get to the MRI room, she was oddly calm and amazingly could hold still for 30-45 minutes until the test was done. She’d always request Led Zeppelin be played while she was getting the MRI.

Her last MRI did show tumor growth, but her wishes were for there to be no medical intervention, and the tumor board at the University of Washington agreed. We knew it was just a matter of time. Last November she had taken a turn for the worse, and I canceled a business trip as we all feared the worst. Catherine was very stubborn – we thought we were going to lose her in the first year after her diagnosis as well. I guess that’s why when she finally went this past May, it was kind of hard to believe she hadn’t rebounded again.

She didn’t talk much in her last couple of months of life. I used to bring her a chocolate shake from Dick’s, which she loved. As she got more and more non-verbal, she would sometimes hold the shake close to her face and kiss the cup. Her way of letting me know that she liked it.

Catherine, after a haircut 2017

I spent the last few days of her life with her, up until the day she died. That day my husband and I opted to give her some peace and stay home. We had all said our goodbyes the day before. Her son came up and he got to spend her last Saturday with her. She had suffered a few seizures in her last few days – even one that lasted over 40 minutes. My youngest sister and my mom were with her when she passed, and they said she seemed pained until the very end. Then she finally had a look of relief on her face.

On her birthday, I’m thinking of all of my memories with her. I wish I could bring her one more chocolate shake for her to kiss. I wish I could take her to see a musical or a band. You are forever in our hearts Catherine.

Happy birthday.

Big sis, little sis

Cruel Cold December

Catherine reacting to my brain hat

I’ve been struggling about what to write regarding the latest setback in my sister’s health. My first blog post here details my sister Catherine’s fight with a malignant ogliodendroglioma. She was diagnosed with this in early 2011. Two-thirds of that tumor were removed shortly after its discovery. After receiving radiation therapy in early 2012, the remaining tumor embedded in her frontal lobe has been very stable.

She had an MRI (turns out that will be her last one) on November 14th, and we got the news that we’ve been dreading for the past five years. New tumor growth, and no options for further treatment.

My sister has resided in a nursing home for the past five years, so her life has not been all that wonderful. Her immediate family (myself, my mother and my youngest sister) visit when we are able to. We used to take her out to dinner, live music, and musical theater. That all ended about 18 months ago when she started refusing to get out of bed. Her stamina is very short now. When we visit, if we can get her into her wheelchair, she will only sit for about an hour before demanding to go back to her room.

She has been refusing to brush her teeth for over a year now. She also will not brush her hair. She insists that she can do all of these things, but she would rather not do them. Whenever I walk into her room, she is always in bed, often asleep. She sometimes mistakes me for our mother. If I call before I visit, she’s forgotten the call by the time I arrive.

Me and Catherine, looks like we’re pretending to do the laundry

My sister is 51, just a year and half younger than me. We don’t really look alike – I’m tall and she’s about 5’4″. I have light red hair, and her hair has always been what my parents called “dishwater blonde.” When we were very young, I doted on her. She’d boss me around, barking orders at me that I’d happily follow. Some of her favorite commands were “open dat door, Hawa.” “Close dat door, Hawa.” She had me running back and forth between her crib and the door like an idiot.

Catherine and I in our house in Aurora, Colorado

I also used to speak for her, so much that my parents started to call me Cathie’s lawyer. She’s just shoot me a look and I’d know what she wanted and I’d ask for it. She got to be the baby of the family until our youngest sister came along, seven years after Cathie. She was not happy with the loss of her status as the youngest, and as we were growing up I’d often have to protest new baby sister from the wrath of old baby sister. Without going into too many details, suffice it to say that my family is pretty sure that Catherine had some brain issues that probably started in her late childhood, due to some of the behavior we all experienced. Perhaps I will write about that in detail at some point.

The polyester family! I dig Catherine’s groovy red pantsuit.

She may have even had this tumor most of her life. Hers is a slow-growing tumor-type. We had a false sense of hope over the past few years that since it was a slow-grower and it had been fairly inactive that perhaps our middle sister would out-live her diagnosis. That is not how this will play out. Her oncology nurse stated that this is often what she has seen with patients like my sister – a long period of stability and then the tumor takes off again. From what I understand, they can also morph into another tumor-type.

I’ve learned a lot over the past five years about brain tumors and brain cancer, and also found out that a lot of people I know have been affected by this disease. Even though we’ve been preparing for this news for five years, it still hit us all hard.

It’s been a tough year. In my last blog post before this one, I wrote about the death of my nephew Matthew in March of this year. He was my sister’s oldest son, and unfortunately had a rare form of epilepsy. My sister has struggled at times to remember the fact that he died, and I’m sometimes grateful that at least her tumor is sparing her some of this immense pain. Her awareness of things in the near past comes and goes – she’s a lot like an Alzheimer’s patient. Her recall of the distant past used to be astounding. It’s still there, but now she often jumbles different memories in with others.

People sometimes ask me if there’s any hope of her getting better, and the short answer is no. She has permanent brain damage due to the tumor being enmeshed between both hemispheres of her brain in the frontal lobe. If a cure for brain cancer was discovered tomorrow, it would save her life but she would still need constant care. The damage to her brain is irreversible.

Thanksgiving 2016 at the nursing home

We have no idea how much time she has left, or how fast we might expect to see a decline. She already is showing signs of losing some language ability – she often struggles to find the right word. Her confusion seems a bit stronger than it was. I expect that we will see good days and bad days.

My husband and I had been planning to spend this Christmas in Hawaii, but this news made us decide to cancel our trip and spend it at home. My sister’s youngest son will be joining us for the holidays, so we’ll try to make the best of it. We have no idea how much more time we have with her.

Catherine and her youngest son

If you’re interested in joining the fight against brain tumors and brain cancer, please consider donating to the Race for Hope. I’ll be participating in this fundraiser in May in Washington, DC.

Losing Matthew

Matthew, with sonic screwdriver. Taken shortly before his untimely death.

Something really awful happened in our family a month and a day ago. I’ve been meaning to write about this, but haven’t really wanted to relive the awful day. I think it’s time, as it relates to my sister and I’m heading to Washington DC tomorrow to advocate for her and others with brain tumors.

As I’ve written in the past, my younger sister Catherine was diagnosed with brain cancer in March of 2011. Catherine had two sons – the oldest named Matthew was born in 1992. The youngest, Taylor, is eleven years Matthew’s junior.

Catherine, baby Matthew & Grandma – 1992

Matthew was diagnosed with a rare form of epilepsy while he was in high school after suffering a seizure. The story I’ve always heard (and it may not be 100% accurate) is that he had a condition called polymicrogyria, which simply stated is an excess of folds in the brain. As my sister related the story, the doctor who saw Matthew’s brain scan was surprised that it was his – apparently most people with this condition present with mental disabilities. Matthew had no signs of that – he was very bright. He had wanted a career in the Air Force as a pilot, but now that dream was no more. He shifted his focus towards film-making.

Matthew and I on one of my many trips to Reno in the 1990s. I think I bought him that coat.

I’ve known Matthew for most of his life, meeting him for the first time as an infant when my sister Catherine brought him for a visit. Over the course of the 1990s, I often visited him in Reno, which is where they lived. I spent much time with him, often coming for a week or so and then taking him places, or playing “construction site” with him in his living room. His parents split up when he was still pretty young, and Catherine remarried a few years later. When she had her second son Taylor, Matthew was often enlisted as a de facto babysitter, as well as a big brother. They were very close until Matthew graduated from high school.

Matthew and his baby brother Taylor

Catherine’s diagnosis came about a year after Matthew’s high school graduation. She had been unconscious for a time when her second ex-husband came to check on her. He had to call 911 and have them bust the door down in order to check on her. She was rushed to a hospital in Reno, and after a CT scan revealed a large mass in her frontal lobe she was airlifted to UCSF in San Francisco, CA. My mother and my youngest sister flew there, and we were soon joined by Matthew, one of his friends, and Matthew’s father. Our father also met us there. After her surgery, she stayed in the hospital for about a month until we arranged to have her moved to the Seattle area. Matthew accompanied her on the plane from San Francisco to Seattle, and I picked them up at the airport.

Matthew and I at his high school graduation after-party at his Dad’s place.

We saw Matthew a few more times over the last couple of years on trips he made to visit his mother. On his last trip here, we met his fiancé Shannon. They both met at the college they attended in Indiana. I last spoke with Matthew in mid-March when he called to tell me the date of his wedding and ask for my address. Unfortunately the date was too close to the trip I’m currently on to the east coast, and I had to decline. I told him to send me an invitation anyway, but he said he’d feel like he was “asking for presents” if he did that. That was the last time I heard his voice.

Family photo, L-R Shannon, Matthew, Catherine, Ollie (Matthew’s Dad), Terry (Matthew’s Grandma), me, Juliet (Matthew’s Aunt) and Rich (Matthew’s Uncle)

I got a phone call from my mother during the lunch hour while I was at work on Monday, March 28^th. I could hardly understand what she was saying through tears. “Matthew is dead.” I had to have her repeat that as I didn’t think I’d heard her right. Matthew was 24 years old, and perfectly healthy as far as I knew. I wondered if he’d been in a car accident, or suffered some other sort of trauma. She told me that it was most likely a seizure.

Matthew and his Mother, at Grandma’s house

I didn’t know that Matthew’s condition was such that it could be fatal. A friend and I took him to a neighborhood hamburger place on one of his visits, and a customer sitting across from us suddenly had a pretty violent seizure. I called 911, but Matthew was very calm and collected. He spoke with the female companion of the man having the seizure, and matter of factly stated that he had seizures and that they were “no big deal.” Having seen him brush off something so cooly that he himself sometimes experienced made me think that maybe his condition was “no big deal.” How wrong I was about that.

After receiving that phone call, the rest of the day was awful. I had to call my youngest sister Juliet at her job and relay the news. I also had to call my husband to let him know our nephew was dead. Just earlier that day I had been posting on Facebook how excited I was that we were going to be seeing Iggy Pop that night. Now I numbly posted that due to an unexpected death in the family, we were not going to be able to attend. I offered up the tickets as I knew our hearts were too heavy to do anything except grieve.

Me and Matt, Reno

This is not the kind of news we wanted to tell Catherine about over the phone. I drove to my mother’s house and picked up some cards and flowers on the way. We waited for my sister Juliet to arrive. We formed a plan on how best to relay the news. My mother had telephoned one of her palliative care providers with the news. On the way to my sister’s nursing home, we got a call from that care giver. She gave us some helpful hints about how to best break the news. She also reminded us that Catherine may not respond in the way that we might like her to, and might even crack jokes or say strange things. We knew this, but it was helpful to hear it anyway.

We arrived at Catherine’s room around 4:00 in the afternoon. We gave her the flowers, and then Juliet broke the news about her son to her. She did react with some disbelief, and did make a couple of attempts at joking. But the news did stick with her. She has a very hard time with her short-term memory. We stayed with her for a couple of hours until it became clear that she really didn’t want us there anymore. I visited her again later that week, and she still remembered that Matthew was dead. It was striking to see her mention it casually, hear her voice break as if she was going to cry, but then watch her go back to mindlessly flipping through a dog-eared magazine. It’s as if the remaining brain tumor in her head is protecting her from the worst of the grief.

In the past year, Catherine has refused to get out of bed. She has willed herself into becoming an invalid. She is incontinent, and unable to take more than a couple of steps on her own. She refuses to use the walker that she has, instead wanting to be pushed around in a wheelchair. Matthew’s funeral was held in Reno on April 16^th. We explained to Catherine that we weren’t able to take her to it as she really cannot travel. She seemed to accept that news.

At the grave site, after the funeral. L-R Suzanne, me, Taylor, Grandma, Juliet, our Dad

My sister, mom and I flew in and out of Reno on April 16^th. We were driven around by my father and his wife. We attended the service which was at Matthew’s old church. The two pastors who spoke clearly knew him well and spoke of him fondly. My nephew Taylor was there along with his father, and Matthew’s father and his brother were also in attendance. We received a recording of the service which we plan to play for Catherine once my husband and I return from our current trip. We are planning to put on a mini-memorial for Catherine.

At the service, Matthew’s degree was awarded posthumously

It still seems very surreal to acknowledge Matthew’s passing. We had to prepare for Catherine’s passing early on in 2011 as they weren’t expecting her to initially survive the year. Nobody ever expected that she would outlive her oldest son. Matthew, you are missed.

Temporary marker for Matthew’s resting place

Thank you for reading this.

This Monday & Tuesday I “Head to the Hill”

The 2015 Head to the Hill Advocates

About a year ago, I signed up to do something I’d never done before. I’m doing it again this year, this time I’m accompanied by my husband, Rich. What we are doing is advocating for people with brain tumors by participating in an event called “Head to the Hill” for the National Brain Tumor Society. What we will be doing is sitting through an all-day training on Monday, May 2^nd, then on Tuesday we “head to the hill” to present issues and tell our stories to our state’s Senators and Representatives.

The 2015 Head to the Hill Washington State Advocates, me, Matt & Ed

Last year was quite a success, and we made progress on many of the issues that were presented. This year we are hoping for the same. We had three attendees from Washington state last year, our state lead advocate Matt, Ed, and myself. This year I hear we may have as many as seven. We had seven meetings last year, and I’m hearing that tentatively we may have ten on our schedule for Tuesday.

Matt & I outside of Representative Jim McDermott’s office, 2015

This year, we will be presenting our lawmakers with three issues, as well as sharing our stories. Our issues are:

• Oral Chemotherapy Parity Issue Brief: Assuring Availability of Oral Chemotherapy for Brain Tumor Patients
• Appropriations for Medical Research and Drug Approval: Ensuring Support for Brain Tumor Research and Drug Development
• Childhood Cancer STAR Act: Expanding Research and Improving Treatment for Children with Cancer

If your life has been touched by brain tumors/brain cancer and you’d like to share your story, please contact me. I’m creating a document to leave behind for each meeting with my family’s story, along with others. If you’d like to write a letter, please feel free to do so. Or if you’d prefer to just write something brief and perhaps include a couple of photos, that would be great. It’s very effective to tell these stories in addition to presenting our issues. It really stays with the people we interact with when they can hear how these things impact real people.

Ed and I outside of Senator Maria Cantwell’s office, 2015

I really felt that this event was the most productive thing I have done to date in the arena of raising awareness for brain cancer and brain tumors. I have been involved in this cause ever since my sister Catherine was diagnosed with a malignant ogliodendroglioma in March of 2011. I will also be participating in the largest fund raiser for brain tumor/cancer on Sunday, May 1^st. It is called the Race for Hope, and about 10,000 people will be taking part in this event.

If you click on the Race for Hope hyperlink, you will be taken to my fundraising page for the Race for Hope, which benefits the National Brain Tumor Society and Accelerate Brain Cancer Cure. Please consider making a donation.

Thank you for taking the time to read this.

Have You an Amusing Anecdote?

I haven’t posted anything in a while, but I’m going to start posting more regularly. My youngest sister Juliet posted the following today on Facebook. I have her permission to post this exchange here. I want to show that sometimes we do have some lighthearted moments with our sister Catherine (aka Cathie).

As relayed by Juliet:

“I just had the most interesting phone conversation with Cathie. She was so hilarious and had me in stitches and was laughing herself. Here is an excerpt of our odd yet amusing conversation.

Me: So if you had to write an obituary for me, what would you write?

Cathie: She was crazy. She was like an egg that was poached too long. And here I was the one with the brain tumor disease.

(Then she added this…)

Cathie: What would you like me to throw in your grave? Would you like a banana? You can play with it in the year you die.

Me: But I’d be dead and couldn’t play with anything.

Cathie: But I think you get to do stuff when you’re dead.

Me: What stuff?

Cathie: Eat, drink and party with your friends who are in heaven.

Me: Hmm…

Cathie: Hell would be sitting all alone in an ugly chair listening to a boxed set of really boring bands.

Me: That does sound pretty bad. What are the boring bands?

Cathie: Bee-Gees, Bread and Barry Manilow.”

Report on our brain cancer walk benefit show, Friday, April 24, 2015

I organized a benefit show last Friday night for the Seattle Brain Cancer Walk. I was so pleased that in addition to my band The Industry People, three other bands agreed to play. Many thanks to Honeybear, Warning Danger, and The Fabulous Downey Brothers. It was a very fun evening, and at the end of the evening a total of $455.00 was raised.

Honeybear was the first band to play, followed by my band, The Industry People.

Next up was Warning Danger, followed by the Fabulous Downey Brothers.

It was a great night, and I’m so grateful to everyone who came out and donated to the cause. Thanks again to everyone, and thank you to Patricia Lockman-Young for the photos she took (the one of the Industry People on this page is by her.)

A good day for Catherine

Life in the nursing home is mostly a drag for my sister. She’s one of only a handful of residents there who are not elderly. Lately she’s been disinterested in everything, even the things she used to enjoy doing. Her refusal to get out of bed most days has resulted in her not being able to walk or even sit upright at times.

It was great that tonight she had a surprise visit from her youngest son, Taylor. Since Catherine’s diagnosis, Taylor has been living with his dad, spending much of his time in a semi truck. This afternoon I was alerted that Taylor would be stopping by to see his mother. I decided to head up to my sister’s home after work as we don’t get to see Taylor very often. Taylor is now 11 years old, he was only 7 years old when his mom was diagnosed with brain cancer.

It’s hard to explain to him that Catherine is often confused. He called her before he was dropped off, and Catherine told him that we were going to the zoo. He texted me to ask if we were indeed going to the zoo. She jumbles up memories of other outings and sometimes thinks that someone is coming to take her somewhere when they are not. Tonight it was good to see her happy, and enjoying the company of her son. My mom also stopped by, so he got to see his Grandma too. I wish that we could give her more good days. These are so few and far between.

Brain Cancer Walk fundraiser this Friday night in Seattle

This Friday night my band The Industry People will be playing a brain cancer benefit show at the Mix in Seattle’s Georgetown neighborhood. All proceeds will go to the Seattle Brain Cancer Walk, which returns 100% of the funds raised to research in Seattle. It’s a great event, and I encourage anyone who is interested in it to get involved. Although I’m raising funds for this event again this year (as I’ve done since 2011), I will not be walking myself. I will be in Washington, DC on this date participating in the Race for Hope, and Head to the Hill. My husband and youngest sister will be walking. Please join them if you are so inclined.

Unfortunately my sister Catherine is not able to walk this year. She is registered as a virtual walker, and has a fundraising page. Last year’s walk was in September, and Catherine could not take very many steps. We had to leave early as she does not have much stamina. She has been refusing to get out of bed for the last few months, so she cannot walk very well right now. Even sitting up seems to be a chore. We are hoping that she will get some additional resources from the palliative care team from UW Medical.

If you are in the Seattle area, please stop by our show if you can. It will be a fun way to raise money for a cause that badly needs the funds. Visit our Facebook event page for more information.

Been meaning to write about my sister’s struggle for a while…

I created this blog in order to write about my sister’s struggle with brain cancer, as well as the trials and tribulations faced by her family members as a result of this disease. I’m finally sitting down to do this.

I was moved to write today as I’m feeling angry and hopeless. Angry at this disease and the chaos it creates, not only for the people who are diagnosed with it, but those who are close to them. Angry that funding for research is not readily available, those of us who care about this cause have to go begging for donations. I try to do what I can in order to combat this feeling of hopelessness. I’m raising funds for the Seattle Brain Cancer Walk which happens on May 3rd. I’m also heading to Washington, DC on May 2nd in order to take part in the National Brain Tumor Society’s event “Head to the Hill.” We will be advocating for increased resources for brain tumor research, among other concerns. I will also take part in the largest brain tumor/cancer event in the county on May 3rd, the Race for Hope in Washington, DC.

It feels like it’s not enough. Today I’m feeling like it’s just a drop in the bucket. I’m feeling overwhelmed by the sad legacy that my sister’s disease has created. Let me give you a synopsis of my sister’s situation.

My sister Catherine is a year and one half younger than myself. She is the second of three daughters that my parents had. Our relationship started out with me taking the role of being her protector and almost “spokesperson” for her when we were very young. My parents used to call me her lawyer as I always spoke for her and told them what she wanted or needed. She bossed me around gleefully as I dutifully tended to her every need. Then our youngest sister was born when Catherine was about seven years old. Juliet’s arrival created a change in the family dynamic, Catherine was no longer the baby. From early on, she was very jealous of Juliet, and often rather violent towards her. There was an incident when Juliet was only about three years old where Catherine slammed her fingers in the car door, I believe on purpose. When I was old enough to babysit us when my parents would leave the house, I often had to physically get in between Catherine and Juliet in order to keep my youngest sister from getting pummeled by Catherine. Things got worse in middle and high school when Catherine was diagnosed with scoliosis and had to wear a back brace to school.

Catherine has always been a difficult person to love, and looking back after her brain tumor was discovered, we all wonder if perhaps she may have had this tumor for many years. At the very least, she probably had an underlying personality disorder or mental illness her entire life. She lied often, stole things from my and my youngest sister’s rooms, wrote her name on the things she pilfered from us, and often tried to pit friends and family members against each other. (She was often successful in this endeavor – she managed to create a wedge in the relationship between her first husband and his brother that lasted for years until the brother was told of her proclivity to turn people against one another.)

When I was about 19 and getting ready to move out of the house, I was at a punk rock show in Seattle when a mutual friend of mine and Catherine’s approached me and asked me how Catherine was doing. I said “fine” and she said “oh because she told me she was going to kill herself by taking a bunch of pills.” This was news to me, and this was the early 1980s so there really were no cell phones. I had to find a pay phone and call my mother. It turns out my sister had taken a bunch of Sudafed. My mother took her to the emergency room. Over the course of the next three days she made two more similar half-hearted attempts to kill herself. One was an overdose of Tylenol, the last was an attempt to cut her wrists with a Daisy safety razor. I believe Juliet found the bloody tissues in the garbage can and alerted my mother. This third attempt resulted in her being held in a psych ward for a few days. Somehow she convinced the counselors there that nothing was wrong, and soon she was released.

My sister continued to have a troubled existence at my mother’s house. I should mention that the year I turned 19, our parents got divorced. My father was now mostly out of the picture, living in Hong Kong. Catherine had a combative relationship with my mother, always blaming her for everything while at the same time living under her roof and not working or contributing to the household. A few years into her twenties (I’m not sure of the exact year) one of our Aunts on my father’s side had offered to let her live with them in San Jose, California. I’m pretty sure my father orchestrated this, and it did get Catherine out of the house. She did find a job at a Sears there doing customer service phone work. This is where she also met her first husband.

Eventually my sister Catherine moved to Reno, Nevada. She had a son named Matthew. I started to visit them in the 1990s, after she divorced her first husband. Our relationship was still rather volatile, but I wanted to maintain a relationship with my nephew. One one visit in particular, I had spoken to her prior to arriving, and she had told me that while I was there I could use her car if I drove her to work and picked her up. I agreed, as this seemed like a great idea since I would be taking care of my nephew while she was at work. Once I arrived she said “I don’t know where you got the idea that you were borrowing my car. You can take the bus.” I was flabbergasted. It was the week after Christmas, it was below freezing in Reno. Her child had the sniffles. The thing is, she was so adamant that I could tell she truly believed that she had never offered me the usage of her car. I would’ve rented one had I known she would renege on the offer. After a pretty intense argument, she finally relented and let me use it. But not before she warned me “don’t expect us to change our routine just because you are here.” From then on, any time I visited I got a hotel and a rental car.

I’d only see Catherine occasionally throughout the 2000’s. She remarried and had another son, Taylor. Taylor and Matthew are about 10 years apart. When Matthew was graduating high school in 2010, my mother and I both went to Reno for his graduation. We noticed a marked change in her behavior and appearance.

Another bit of back story – Catherine had a history of dating men with substance abuse problems. One of her first boyfriends was a teenage alcoholic who I remember having to drive to the hospital once when he was having the DTs. She also dated a heroin addict for a time. When we saw her for her son’s graduation, it wasn’t much of a stretch to assume that she was perhaps taking drugs.

My mother stayed with her, and noticed her home was in disarray with not much food in the home. Her hair was so tangled and snarled that my mother had to take her to a hair salon and have someone spend about three hours combing out the snarls. Catherine just swore and yelled the entire time.

Catherine by now was also divorced from her second husband, and living in housing on some sort of public assistance. She had always been a very tidy person, in fact she used to hoard bars of soap much to our amusement. My mom was very surprised to find her home in a messy state. She also seemed very confused about many things, and looked wild-eyed. She also began to blurt out strange things. When we all left, she would call my mother and younger sister on the phone and continue with her odd tales. She spoke of having “dizzy spells” and brushed them off as no big deal. She also took delight in tormenting Juliet with crass and inappropriate conversations, so much that Juliet soon began to refuse to speak to her.

Early in the year of 2011, my husband and I flew out to Reno. Our plan was to meet up with her oldest son Matthew and possibly go visit Catherine and perhaps try to persuade her to go to a clinic or a doctor. Once we landed, our plans were thwarted at is was snowing heavily. There was soon more than a foot of snow on the ground, and my sister’s home was a few miles outside of town – not easily accessible. We did meet up with Matthew, and he thought that Catherine would not be receptive to a visit – it was also unclear as to whether or not she would actually answer the door. He was pretty sure she would refuse the offer of a medical visit.

It turns out that my sister did seek out some help during this time. She visited Nevada Mental Health services, but somehow they took no notice of the tremor she had in one of her hands and wrote her up a prescription for some anti-depressants. She also had a history of never liking to go to the doctor, which complicates things when you suspect something is wrong.

In early March of 2011, I received a phone call around 4:00 a.m. in the morning from my sister Juliet. She said that Catherine had collapsed, and was being airlifted to UCSF from Reno as she had a large mass in her brain. We scrambled to find a flight and hotel to San Francisco that same day. It turns out, she had a seizure (or as she called them, dizzy spells) and had fallen in her home. Her second ex-husband had come by for a visit, and when he knocked on the door, she said she couldn’t get up. He couldn’t find anyone to open the door, so 911 was called. The protocol for when someone has been passed out is to do a CT scan, and that’s how her brain tumor was discovered.

Once she reached the hospital at UCSF, they did a biopsy and found that her tumor was malignant. It was determined to be an ogliodendroglioma, stage four. It was 6cm x 6cm in size, enmeshed in her frontal lobe between the two hemispheres. Had she not collapsed and been given a brain scan at the emergency room, it’s doubtful she would have ever been diagnosed. She was on the verge of being evicted from her home for nonpayment of bills. It also turns out that her place was by now so filthy that neighbors were complaining about the stench emanating from it. She would have ended up homeless, wandering the streets of Reno, and would have most likely died there.

My sister’s surgery and subsequent month-long stay at USCF was the start of her, and the entire family’s, long journey through the aftermath of her diagnosis, treatment, and care. My sister Juliet and I took on the role of finding the best treatment options and long-term care for her. We looked into the possibility of her returning to Reno, that did not look like a viable option. UCSF told us that they would just turn her over to a homeless shelter upon release. Returning her to Washington state looked like the best alternative. Juliet arranged to stay in the Bay Area until Catherine’s release, and I contacted Seattle Cancer Care Alliance who hooked us up with a plan for her future care to take place at UW Hospital.

The plan was that once in the Seattle area, my sister would live at my mother’s house with Juliet and my mother. When my sister finally arrived after her release from UCSF, things did not go well. A couple of days after Catherine’s arrival, Juliet could tell that something was wrong. Catherine was very agitated and combative, more so than should be expected. Juliet called her care team at UCSF and was advised that Catherine should be taken to an ER immediately as she might have blood clots. This is where it became evident that my sister could not live at my mother’s house. Catherine refused to go, and was screaming and yelling and threatening to physically hurt anyone who tried to take her to the hospital. She swore she was never going back there. 911 had to be called, and several sheriff deputies ended up having to physically restrain her in order to get her into the ambulance. It was not a scene that anyone wanted to repeat, and it was heartbreaking for Juliet and our mother. Thus began an extended stay at the University of Washington hospital – she indeed did have several blood clots in her legs.

I should point out that right before and after surgery Catherine’s behavior was alarming and erratic. She swore constantly, using a tone that I can only describe as straight out of the movie The Exorcist. She threatened to kill me a couple of times, and said terrible things to her care givers. This behavior continued during her stay at the UW Hospital, but began to lessen somewhat. Juliet began the search for a place for Catherine to live during this time, and this was not easy. We had to find a home that not only took Medicaid/Medicare, but also specialized in dementia care. Catherine’s tumor was only 2/3 removed, the other third remains in her brain as it was enmeshed with her brain tissue. She has suffered permanent brain damage as a result. She has short-term memory problems, and will never be able to live independently again. She cannot care for her youngest child, and at times even has problems remembering his earlier years. This makes sense as she most likely was already experiencing the effects of this tumor shortly after his birth.

These days Catherine lives in a nursing home facility north of Seattle. Her prognosis has been up and down. Originally she was not expected to live through the year of 2011. Mentally, she had given up in the months after her diagnosis. She did agree to participate in the 2011 Seattle Brain Cancer Walk. After that event, she decided to try radiation therapy. She underwent that for several weeks, losing patches of hair and sometimes having to be reminded what she was going through. For the past few years she hadn’t experienced any new tumor growth. This year, it appears that her MRIs are showing possible tumor growth. She has also become noticeably more  depressed and lethargic over the last six months.

I plan to post more about this as there is so much to say. This is just a small slice, and a synopsis, of what she and we (her family) have been going through since March of 2011. I thank you for taking the time to read this.