Tag Archives: cancer

Bilateral Mastectomies: Scared, but Determined

Update on my health, if you’re interested, if not, please carry on! (TL;DR: Surgery 9/19/18, I’m scared, but determined!)

September 19, 2018. That’s the date I’ll be going in for surgery. I’ll be having bilateral mastectomies with delayed reconstruction. My surgery will begin at approximately 4:30pm, and then I’ll be staying the night in the hospital.

I’m at peace with my decisions about treatment, but I’m pretty scared. I’m scared of quite a few things… 

I’ll be honest, I’m mostly scared of pain. I already have a bum knee and a bum foot on different legs, so mobility is occasionally an issue for me already. I hear that I’ll be unable to lift my arms for a week or two, that just walking to the bathroom will be difficult.

I’m also scared of how my body will look, even after reconstruction, and how that will make me feel. I’m scared of how I will feel about my body’s less than sexy scars and new dimensions.

I’m scared that I’ll gain *more* weight. I know the typical picture in my head of a cancer patient is that they lose weight, but commonly breast cancer patients will gain weight.

I’m scared that the surgeon will find more cancer. I’m scared that if that happens, I will be told they want me to do chemotherapy. I don’t think poisoning my entire body is a good idea. I don’t think the benefit is always worth the misery of chemo. It would have to be a really big difference for me to do that. I’m scared that I’ll have to fight everyone for the right to make that decision.

I’m scared that I’ll get lymphedema (a common after effect.) This is a swelling in the arms from extra fluid in the area that can be very painful and not good for you.

I’m scared that I won’t be able to do my job for awhile and that I’ll drop the ball on something important. I’m the office manager of a small engineering firm and there isn’t any other purely support staff. Everyone else is either an engineer or a drafter, not trained office support personnel. I think it will be okay, but the idea of things not working out like I think they will definitely scares me.

I’m (minorly) scared that the financial impact will be difficult to take, as we get hospital bills and my hours at work are reduced. We are in the extremely fortunate position of having enough money to get by without scrimping. We can go out a lot (a fact I’m sure does not go unnoticed) and take a vacation every once in awhile. If I were to lose my job and my health insurance, well… that wouldn’t be good.

I am really missing my mom right now. The love and support from everyone is really fantastic and I’m so very grateful! But still… I miss my mom. I miss her hugs. I miss her never-wavering support. She wasn’t always the best at being a mom… I don’t think my parents really wanted kids… but she was a good mom, after I became an adult and I didn’t need her for things like, you know, *survival*. She believed in me and was super supportive of me! She thought I was brilliant and funny and kind! And that’s what I thought of her too! I do try to be those things. It doesn’t *always* work. She’s still alive but living in a memory care center and she doesn’t know who I am, and isn’t really verbal anymore. Just a word here and there. Last summer she was in the hospital for a couple of days and I spent many hours there with her. She said “I like you” to me with a smile. I cried as I smiled back and told her that I liked her too, very much. So yeah, missing her right now.

Despite all these fears, I am determined to try my best to be courageous and face these obstacles head on. I am determined not to let this disease define me. I am determined to live my best life, for as long as I can, which should be a long time. I’m only 52. Lots of life left to live, places to visit, people to love, and memories to be made!

Thanks again to everyone reading this and thinking of me and praying for me and sending me encouraging messages. I treasure them all! 

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Grief is an Interesting Creature

Grief is an interesting creature. It has fangs and claws, it screams and cries, and yet has soft fur and kind of purrs sometimes. 🦁

There is a strange solace in grief. Mostly I feel a little detached, and a lot fuzzy. Forgetfulness and an inability to concentrate and focus are ever present.

It’s been just over a month since my father died, unexpectedly. Since I found out my first love had passed away three weeks prior. Since I got the diagnosis: Breast Cancer.

These are all things that I am grieving, along with the many fears that come with illness: will I be able to keep my job? If so, will I lose significant income? Will I be hit with huge medical bills? Will they find more cancer when they do surgery? Will I have to do things that don’t feel ‘right’ to me? Will my marriage suffer? Will my friendships suffer? Can I still be more than just my disease? 😢

I am not conscious of grieving most of the time, but the symptoms are all there, even when I say “I’m fine”. I had some of these things before this, but I’ve also been grieving my mom’s long, long, long goodbye for well over 10 years, and grieving my sister’s death last year. Here is a list (from griefwatch.com) of some of the physical, emotional, social, and behavioral symptoms I can truly say I’m experiencing right now. I deleted the ones that didn’t apply to me. There are still a lot of words here…

*Physical*
Feelings of unreality; Physical distress such as chest pains, abdominal pains, headaches, nausea; Change in appetite; Fatigue; Restlessness; Crying and sighing; Feelings of emptiness; Tightness in the throat

*Emotional*
Numbness; Sadness; Anger; Fear; Relief; Irritability; Guilt; Loneliness; Longing; Anxiety; Meaninglessness; Apathy; Vulnerability; Abandonment

*Social*
Overly sensitive; Dependent; Withdrawn; Lack of initiative; Lack of interest

*Behavioral*
Forgetfulness; Slowed thinking; Wandering aimlessly; Trying not to talk about loss in order to help others feel comfortable around them; Needing to retell the story of the loved one’s death / illness; Needing to retell the story of my diagnosis.

I’m in therapy (because I’m always in therapy!) and that’s helpful. It’s the only place I’ve truly mourned my dad, cried my eyes out and yelled about the unfairness of it all. The finality of knowing I will never get what I wanted from him. The child inside of me is wailing about feeling unwanted and unloved, never feeling good enough, never feeling like my dad and I knew each other. Knowing those things will never be fixed now. Even when I knew it intellectually before he died, the child in me hoped. That hope died with him. That’s really hard.💔

Therapy is also proving helpful for John and I to communicate better. He’s also joined a club he never wanted to join: Breast Cancer Husband/Partner/S.O. He’s joining me in some of my therapy sessions to help us communicate better. To help validate both of our feelings and identify where the rocks are that we keep stubbing our toes on. *Ouch!* is a common emotional feeling for both of us, because everything is just simmering below the surface and it doesn’t take much to erupt into an argument. Feeling selfish, feeling like the other is being selfish, feeling abandoned, feeling helpless. None of it is fun.

All of it is life. 👩‍❤️‍👨

Just keep swimming… 🐠


“All is well, until I hear definitively that it isn’t.”

UPDATE on my health if you’re interested. If not, carry on!
(TL;DR: all’s well, surgery getting scheduled soon.)

“All is well, until I hear definitively that it isn’t.”

The ultrasound follow-up appointment last week (to the breast MRI) came up with no issues after all. Biopsy was cancelled, as it was not needed. That was a huge relief all around.

John and I met with my plastic surgeon as well, last week. I really felt heard and seen, my thoughts and my decisions were listened to and not diminished or minimized in any way, and so I’m very happy with her as my surgeon.

The treatment plan is still for a double mastectomy with reconstruction, but it will be done in a couple of extra steps. The reconstruction will not happen until later in the process, after the mastectomy has mostly healed up. She will be at the mastectomy surgery to be involved and have accurate information for my treatment, but she won’t be doing any surgery at that time. After a few weeks, she will then insert skin expanders. They look like flat donuts that get filled with saline, in steps, to encourage the skin to stretch and make room for the implants. Then I’ll have a third surgery to put in the implants. The exciting part (strange word choice perhaps) is that the implants will go above the pectoral chest muscles, not behind!! This is apparently not viable for everyone, but is for me, and the people that have had this have had an easier recovery and are happier with the results, according to my oncology nurse navigator.

All of it is still overwhelming and scary, but I’m at peace with the process right now. Everything could still change on a dime, when they do the surgery and can see what’s actually going on inside the breast tissue and the lymph nodes that receive the lymph from the breast tissue (located in the armpit). If there is cancer found in the lymph nodes that would mean the cancer has metastasized outside of the breast tissue, or at least is trying to get out and get into mischief elsewhere in my body. The oncologist surgeon thought this was very unlikely, but nothing is ruled out at this point.

I’m not really scared about the cancer at this point. I’m scared to have surgery! Until a few years ago, I’d never had any sort of surgery, and even now i’ve only had a couple of laparoscopic surgeries. This time they are going to cut me open, cut things out, rearrange things, and stitch me up again. Then, they’re going to cut me back open, put things in and stitch me back up. And then, they’re gonna do it again! I figure by the third surgery I’ll be a pro at this, but right now I’m pretty nervous about the cutting open and the aftercare. Seems kind of silly to be nervous about the aftercare, but here we are anyway. “I don’t know what I don’t know”, right Bev? And Linda😍

Because of the change in surgery requirements (delayed reconstruction), I’ll need a shorter time in surgery and a shorter time in the hospital afterwards. Those are both pluses. I meet with the genetic testing person this Thursday to find out what was found out through the genetic testing they did on my dna, but at this point I’m not expecting it to direct my surgery, as it might have if I was planning to just do a lumpectomy. It might direct my future care, as the same gene variants that are known to be found in high occurrence of breast cancer are also found in a high occurrence of ovarian cancer. Ovarian cancer has no real screening process, so we might decide to remove the plumbing, as it were. My step-sister (Selena) died of ovarian cancer last year, the survivability of it is not great, and I want no part of it!

I’ve requested waiting for surgery to be scheduled AFTER my daughter’s (Chantelle) wedding and reception in mid-September. I would ideally like to have surgery at the beginning of October. The last week of the month is my busiest time at work and is not the best time for me to be down for the count. However, … we do what we must, so if that’s not workable, we’ll do what does work. They don’t like the idea of pushing my surgery out too far, but really it’s probably been growing for a few years, so hopefully the few weeks won’t change things. The growth rate of this cancer is very low (5%), so it shouldn’t be an issue.

I’m not a medical person, other than what I learned for massage therapy, so I may have some of these particulars not *quite* right. But, to the best of my understanding, this is where I’m at now. As I said earlier, I’m at peace right now with the entire process, and feeling optimistic about the treatment plan.

I’ve increased my self-care in increments: an extra massage per month (thanks Kathryn!), adding acupuncture (thanks Marianna!), continuing personal therapy, trying to meditate, using hypnosis applications for relaxation, healing, and positivity, spending time outside in a peaceful environment (my wonderful backyard!). Giving myself a month to eat my feelings (Hello, Ice Cream, you beautiful source of comfort!) was okay with me, because it was what I felt I needed then (like, “I’m stressed out! I’m eating the damn ice cream!), but now I’m about to embark on a healthier eating plan. Because, self-care isn’t just about doing what feels good. Self-care is choosing the best thing for me, even when I don’t like it. I love sugar. I mean, I REALLY love sugar. But, it’s got to go! Empty carbohydrates have no place in my (future) healthy body, no more than once in a great while. That means I’m going to have to eat right and step it up and figure out how to exercise without throwing in the towel. I’m told I will need to incorporate nutrition and movement in ways I have resisted thus far. I’ll figure it out eventually. 🤨

If you’ve gotten this far, thank you for taking the time and having the interest to read my words! And, a heartfelt thank you to so many of you, for reaching out to me personally. I really appreciate the evident care and love being directed toward me. It gives me strength to know I’m not even close to being alone on this journey, not even in the moments when I alone have to make what I feel are my best choices for treatment and care. 💗


**I will not fall apart!✊**

UPDATE on Health Information / Introspection / Thoughts on this process of breast cancer discovery and treatment. If you aren’t interested, please carry on!
(TL;DR: MRI leading to ultrasound and biopsy of the other breast, results TBD)

**I will not fall apart!** However, today is a struggle for me. I was blissfully unaware during my acupuncture appointment this morning that I was getting a phone call from the hospital, telling me that I needed to come in for an ultrasound and biopsy on my other breast.

I put my phone on airplane mode for my appointment to avoid any interruptions that would make me fret about what the notification was. I spent the entire appointment coming up with the names of unusual animals for every letter of the alphabet. So, instead of C is for Cat, I said C is for Cheetah, that kind of thing. The intention is to keep my mind fairly in the present and solving a puzzle instead of worrying over the past or the future, which is really important for me right now. I have pretty significant anxiety at the best of times. Right now it’s working overtime.

Then, I got in my car a few minutes after my appointment and discovered I had a voicemail, with no other information besides “these are the things the doctor wants you to come in for, here are the times and dates we chose, call if you can’t do those times or dates, otherwise see you then.” Wait, what?!? 🤔😳😣

I had my breast MRI done yesterday. Not a procedure I can recommend. Review: 0/10, would not do again by choice. I’ve had lots of MRIs over the years, but none of them were that uncomfortable. I had to lay on my stomach with my arms stretched out in front of me, like Supergirl. (WHOOSH!) I was laying on a contraption/form that then goes into the MRI machine. There were holes in the…. form?… that my breasts fit into, and my body was on foam padding that allowed my knees to bend a little. Not too uncomfortable, should be okay for 45 minutes, I can do that. THEN, they put me in the machine. It’s basically a tube, about the length of a person, if you haven’t had an MRI. The machine then closed around my hips and abdomen, squeezing me to the point that i could just barely take a deep breath. Then they say “try not to move”. Uh… yeah, definitely not moving. I’m barely breathing!! But then the body says “i can’t breathe, i must now breathe harder and faster than normal because i need extra oxygen!” They tell you to try to relax and zone out as much as possible… RIGHT. I’ll get right on that. *eyeroll*

If I understood correctly, they took a bunch of images, then injected a contrast dye into my veins and took the same bunch of images. This helps to clearly show breast tissue details. There is the possibility of false positives, meaning they might see something that looks like a tumor or atypical, but upon biopsy is benign. So, this definitely doesn’t mean I have bilateral breast cancer! But, it might… 👀

“It might…” is such an anxiety-provoking concept. Ugh. 🧠

I go in on Monday, August 20th for an ultrasound, and then again on Thursday, August 23 to do a biopsy. So, clearly, they have seen something for which they don’t like the look and want to get a physical sample of to test for cancer cells.

Well.

Okay then.

“All is well, until I hear definitively that it isn’t.” This is my new mantra; I picked it up from another patient that attends the breast cancer support group at the hospital. 💞

I will try my very best to enjoy my weekend! I hope you all enjoy your weekends! Thank you for your love and prayers and wonderful messages to me. If you sent me a personal message, I promise I’ll be getting back to you. Just a little overwhelmed at the moment, but I am truly grateful, again and more. 😍 💗💖❣️


Buckle Up, Babe! This Could be a Bumpy Ride!

Update on my health for those interested. If not, please carry on! (TL;DR: Stage 1A, surgery TBD)

On Monday, August 6, I went to meet my breast surgeon to talk to her about my cancer and my treatment options. I was relieved that my surgeon was a woman. Not that I wouldn’t trust a man, but I felt better knowing we had the same equipment and hopefully a better understanding of and empathy for the emotional minefield that comes with the possibility of losing one’s breasts and what that might mean to me.

I went into the appointment with a treatment outcome in mind, but I wanted to be open to hear what she had to say. John accompanied me, and having been advised to bring someone who could take notes and listen to the doctor without a WHOOSHING sound rushing through their ears, I brought my longtime bestie, Sonja. She took 3 pages of notes. I also voice recorded the meeting.

I have a small (1.4 cm) tumor that they have preliminarily staged as 1A. This is very good. The doctor’s recommendation was for a lumpectomy followed by radiation, probably no chemotherapy needed. The words radiation and chemotherapy scare me, so that’s when the whooshing started. In my mind I thought “I DON’T WANT RADIATION AND CHEMOTHERAPY!!!!!” and I leapt back to my treatment plan: double mastectomy, no radiation or chemotherapy! This was about the time I stopped listening very well.

Unfortunately, or fortunately, I’m not sure which, I did hear the part where she said that mastectomies don’t rule out chemotherapy. This is where fear set in. I could feel the tension settling into my frame. In the fight or flight response, my conditioned response is actually to freeze. So, I felt my body freezing and my brain. I was thankful immediately for the voice recording and the notes that would be available for me, for when my higher functioning brain would kick back in.

So, I was partially successful. I listened, and I asked some questions, and then I still wanted the same treatment plan. I asked them to schedule for a double mastectomy with reconstruction. The doctor advised that it would take awhile to get that on the books because the operating room has to be scheduled for a long period of time, and both the breast surgeon and the plastic surgeon have to be available for it.

In the meantime, I’ll be meeting with the plastic surgeon for more information on what I can expect from reconstruction. If I decide to scale back on what I want done, it’s easy to take time away from a scheduled surgery. It’s much harder to add a few hours on to a surgery that was going to be for a lumpectomy. So, I decided to plan for the most surgery time I would need, then scale back if I want to later. I’m already second-guessing the mastectomy idea after reading up on the different treatments available. The fact that I can get reconstruction on both sides so things are symmetrical, without having to do double mastectomy is appealing. But, it will depend on some other factors… Such as the following.

When the doctor heard that my maternal grandmother’s double mastectomy for breast cancer had probably occurred pre-menopause, she decided I needed genetic testing. When she did my exam and I mentioned that I had recently (a few months earlier) had a lump that I thought was a lymph node along my collar bone just above my tumor (though I couldn’t locate it just then), she decided I needed an MRI with contrast to get a better picture of what might be going on. Perhaps this is more than a simple Stage 1A tumor. Perhaps a simple lumpectomy will not be enough. I need more answers.

I went home and called my aunts, to see what they knew about my grandmother’s cancer, when she was diagnosed, what she was diagnosed with, etc… NOT MUCH, as it turns out. Apparently they were just told that their mom needed to go get some rest for a couple of weeks. They were still at home and in school at the time. My mom was the oldest child and she can’t answer any questions anymore. She had told me long ago about the mastectomies, but she was very unclear as to whether her mom had actually had breast cancer. I had come away with the impression that maybe she hadn’t actually had cancer, that maybe it had been preventative, or a scare that they decided to handle with an emphatic response.

Let this be a lesson: If this kind of information isn’t freely given out in your family, ASK your parents about your family medical history. Write it down somewhere you can find it again. Eventually you’ll probably need it, and then you won’t struggle for days like I did to fill out the family history questionnaire for genetic testing!

After I spoke with my aunts Mary and Margaret, I gave my mom’s cousin Joan a call. My aunts had both mentioned she’d probably know more than anyone else about this. I had never spoken to her before, though apparently we’d met when I was young. We talked for over an hour and boy did I find out that cancer runs in my family!

So, now… I go to get an MRI and Genetic Testing (not exactly sure what this entails yet) this coming week on Thursday. I’m a little nervous about the outcomes of these tests but I’m glad they are looking further than the immediate problem.

On Tuesday, I went to a Breast Cancer Support Group for patients and survivors. It was really good, but a little intimidating to see what these women were going through. I told them about my triple whammy of ex-boyfriend dying, father dying, and cancer diagnosis within 1 week. Everyone’s jaws dropped. I told them that I was a little concerned because so far I hadn’t really cried about any of it for very long, and I’m a crier. I mean, I cry at commercials all the time! People say to me, “you’re too sensitive!” The group told me it will hit me when it hits me, and to just be cautious about how much I took on in the near future. To be aware that I could get overloaded easily and to have room and space in my life to fall apart for a little while if I needed to. To build the best support system around myself that I can. I had lunch with a couple of them after the appointment and they gave me a lot of good information and wisdom.

Maybe too much… I left in a great mood, but by nightfall I felt completely overwhelmed. When I get overwhelmed, I cry, I withdraw, I’m irritable, I want to be alone, and I write. In this case, I mostly got quiet and withdrew into myself. It lasted a few days.This was hard on John and on me.

John is also struggling a bit. He’s helpless to do anything but be supportive. He can’t fix it. He’s an engineer. That’s what he does. He figures out how to make things work. But he can’t fix me. This makes him also withdrawn and irritable. John also needs a support system. In our lives, I’ve been the one to hold space for and handle the emotional issues. When the kids were younger and troubled, I handled the emotional impact, he handled logistics. But I can’t handle the emotional aspect of this for him. I am full up, handling the emotional aspect for me. Buckle up babe! This could be a bumpy ride!

That’s all I have to tell you for now. If you made it this far, thank you for taking the time and having the interest. It is tremendously helpful knowing I have a small army at my back, people that care about me, that are available to me, that want to help. Thank you, thank you, thank you! I’m so grateful! People have messaged me and called me and it’s been a tremendous gift!

(p.s., the family information tree got activated [though I am not on it, must fix that] after I spoke with my mom’s cousin, and I heard from my somewhat long lost 2nd cousin, Kristin Leaf, which made me super happy!!)


It’s a Strange Time in my Head.

Things come in threes, right?!? I wasn’t planning to share about this just yet, but it seems like the right time. 💝

I feel like maybe Life & the Universe has been preparing me my whole life to be strong for this moment. I found out on Thursday, July 26, that I have breast cancer (invasive lobular carcinoma), very small, hopefully easy to treat. I don’t know anything more than that at the moment, but I’m feeling optimistic and scared, nervous and confident. It’s a strange time in my head.

Last year when my sister was terminally ill, she and my stepmother tricked out their backyard patio into a lovely place to lounge and read and visit. I decided that I also wanted my backyard to be an oasis of charm and comfort, and so we spent some time and money this year, getting that done. Now I feel thrilled that I have that in place already for the upcoming months! (Before it gets cold again.) I have a feeling you’ll be able to find me out there many evenings and weekends in the near future.

As I am with most things, I’m planning to be pretty transparent about my experience. I don’t think anything or anyone benefits from keeping things in the shadows. I think community works best when we’re sharing our lives and our struggles. It’s easy to want to just share our best selves, curated for perfection on social media, but that’s not real life. I try to live authentically, trusting that this will help me give and get the best support to and from other people.

Until I get more information about what’s happening and what my treatment plan will be, I can’t actually answer questions with anything other than “I don’t know.” I will see my breast surgeon on Monday, the 6th of August, and will hopefully get some answers, but for now, I really don’t know.

My own personal treatment plan is to be as compassionate as possible toward my body and my mental health. I haven’t been great in my life about showing compassion to myself, but I’ll be working on that now. I’m not a huge fan of the term “fighting cancer,” as I don’t want to fight my body, but I will be working as hard as I can on healing myself. I will keep you updated.

I’m moving forward with strength!

💖 💕 💝

Updated to add: I firmly believe I will be okay, and this will be over sometime soon-ish, with me still here, living a beautiful life. And I really do have a beautiful life! I wasn’t very clear about that. Just nervous about what lies in between now and then!


Another Goodbye, Too Soon

I just got news last night that Kevin Kerr, my first real long-term relationship, first real love, passed away from pancreatic cancer on July 13th. We were in touch off and on over the years, though sparsely, but I’m so glad to have those emails and texts to look back on. I was happy to see he was still drumming his whole life. Rock on Kevin! You’ll be missed in this life.

 


Goodbye Little Sis! I’ll Miss You!

On Friday I lost my little sister, Selena, after a 3 year fight with ovarian cancer. Words can’t really express how much she impacted my life. She lived with tons of enthusiasm and a huge heart and gave the best hugs ever. She loved people fiercely and they returned the favor. I’ll miss you forever! I love you always! Thank you to everyone who has offered their support and loving words during this time. ❤️

Selena’s Obituary:

Selena Adele Steinmetz was born in Portland, Oregon, on September 13, 1970 to Marvin Duane Steinmetz (deceased) and Janet Svarverud King. She passed away with loving family by her side at her parent’s home in Lake Oswego, Oregon.

Selena was described by a friend as a “never give up kind of soul” who lived her life with determination and grace. She was born with a hearing loss that made life more challenging for her, but it never kept her from succeeding. In her early life she loved drama, music, dance, and swimming. Although she sometimes struggled with school and social situations, she later said that she’d always felt truly encouraged and accepted in the Unitarian Universalist church of her upbringing. She actively participated in UU churches all her life, even seeking out UU communities when she lived overseas.

As a child, Selena enjoyed exchanging letters with international pen pals in England, France, Spain, and Poland. She spent the summer following her high school graduation in 1988 visiting each of her pen pals and maintained friendships with them for the rest of her life.

Curious about far-flung cultures and how other people lived, she loved visiting her father and stepmother in Paris and she worked hard in the classroom to learn Spanish (eventually becoming fluent in the language). At age 16 she participated in the Amigos program, living with a family in Costa Rica for 8 weeks after selling boxes of grapefruit during 2 school years to finance her trip. That program, which focused on health-related work, and the time she’d spent as a candy-striper at Kaiser Hospital was the beginning of a life dedicated to service. She studied Anthropology at Lewis and Clark College, and spent a semester living with 2 families in Oaxaca and Guanajuato, Mexico. After graduation she went into the Peace Corps, serving as a health care worker in the Dominican Republic.

Upon leaving the Peace Corps, she enrolled in Gallaudet University in Washington, D.C., where she became proficient in American Sign Language (ASL). She earned a Masters Degree in Special Education with an emphasis on early intervention with Deaf and hard of hearing children. One of her passions was working with infants and children 0 to 5 years old and their parents. She worked at Governor Baxter School for the Deaf in Portland, ME, at Boston Children’s Hospital, at L.A. Unified School District, and Berkeley, CA, eventually returning to Oregon where she worked for the Willamette Education Service District before ending her career by serving U.S. military families as an early childhood special educator on bases in Japan and Germany.

Selena had a brilliant smile. With her glorious curls set off by a sassy hat, she was the picture of a woman with a zest for life. Her hobbies included dance and music, with special emphasis on African drumming and the music of Cuba. She also delighted in travel, where her diverse interests took her to China in 1999 with a group of Gallaudet students to learn how the Deaf were educated there, and later to Africa in 2009 to further her knowledge of drumming.
Selena displayed extraordinary courage, intelligence and love of learning in all she did. In her last years, she attended a UU sponsored book group that brought women in prison together with women from outside. She also traveled with her mother to Italy, France, Slovenia, Croatia, and Costa Rica. Determined to live fully up to the very end, it was her dream to go to Cuba with a Lewis and Clark alumni group in June, 2017 that would focus on Cuban culture, including music and dance.

Friends and family will miss her energy, her enthusiasm, her curiosity and her love.

Three years after diagnosis, Selena lost her courageous fight with metastatic ovarian cancer. She is survived by her mother and stepfather, Janet and Jim King, her stepmother Christine Blair, grandmother Elizabeth Steinmetz , and the siblings of her extended and blended family: Gillian Steinmetz-Blair, Bob King (Anne), Sandi Adams (John), and their children, as well as cousins, aunts and uncles and many special friends who dearly loved her.

Her memorial service will be held at the Unitarian Universalist Congregation at Willamette Falls in Oregon City on August 4, 2017, at 2 p.m.


“My sister is dying…”

For the last 26 hours, since I was given the news that my sister’s cancer is inoperable, my every thought seems to begin with “My sister is dying…” and then fragments from there. Simple muscle memory activities, the things I would expect to proceed without error, are done incorrectly, in the wrong order, with steps mixed up and/or left out. I find myself rehearsing in my head what needs to be done next to finish an activity. And even then, they all seem to start with “My sister is dying. What do I do next?” Today I put my phone in the fridge. I hit the wrong buttons on the microwave. I immediately forgot the answers to questions I asked and had to ask again. I walked myself through doing the laundry, step-by-step narration in my head.

I think about what I might be wanting to hear if it were me. “My sister is dying. What does she need from me? What can I say that will reassure her? What do I do next?” I think about who she worries about, and what she might need to know. She never married, has no kids, no life partner, but still she will be leaving people she loves behind. People she might worry about. Is she worrying about her mother, my step-mother? I will be there for her. I will reassure my sister that her leaving this world will not leave her mother alone. I will tell her I love her, that I don’t want to lose her. But I also feel the need to reassure her that it will be okay to go, when it’s time. It’s what I would want to know. That my loved ones would have each other, that they would not be alone, that they had companions both in grieving and in living again with this new hole in their lives that is sure to come. “My sister is dying. What do I do next?

I don’t know how much time there will be before she goes, but I don’t think it will be enough, because it could never be enough. I also think it will be too much, because when there is pain and suffering involved, surely there will be too much. I feel helpless, and angry, and unspeakably sad, and afraid, and ill-equipped to cope with what is happening. Over a day later, my thoughts still start, “My sister is dying. What do I do next?” and then fracture into little vignettes of stop-motion animation, stuttering across my brain. I am operating in a fog.

She will be 46 next month. I imagine (I hope) she will be here still. Then the seasonal holidays will be upon us before you know it. Will she be here for all of them? Some of them? Any of them? How will this change my feelings about the holidays? They are already bittersweet, at best. How will she feel? If it were me, I think I would worry about leaving a sad memory, to accompany all future holidays for everyone. I don’t want this for her. I don’t want her to feel responsible for managing the feelings and thoughts of the people surround her. I don’t know if she will dwell on this. “My sister is dying. What do I do next?” I will tell her it’s okay to let any of those guilty feelings go.

I will give her the gift of my imaginary beautiful walled garden, my safe sanctuary, and my imaginary lion, who protects me, and my imaginary mama-bear, who nurtures and cares for me, and my imaginary wise owl, who counsels and teaches me, and I will hope that these bring her comfort in the same way they do for me. “My sister is dying. Here is the love I know how to give. What do I do next?

I am temporarily broken. After all this, when I am put back together, there will hopefully be light shining through the cracks in my surface. My new normal. I have learned that the best way to heal myself emotionally  is to be present for someone else, someone dealing with whatever I’ve already gone through. To give them tools for getting through to the other side. While I would certainly prefer not having the hard times, I know that my experience is redeemed if  I am here for the next broken person the world puts in my path with the same or similar wounds. “My sister is dying. I feel helpless. What do I do next?

Tomorrow’s goals:

  • Be loving.
  • Be present.
  • Show up.
  • Listen.
  • Ask how I can help.
  • Forgive myself for making mistakes as I do these things
  • Keep doing these things.