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!!)

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Goodbye Daddy

Update: my dad, Jim King, passed away tonight, a couple of hours after I left for the night. About a half hour ago.

I knew it would probably be tonight, so I left knowing it would be the last time I saw him, most likely.

It feels different than I expected.

He’s had dementia for awhile now, so he has been mostly gone for the last year or two. He still recognized me, even this week, but he hasn’t really been capable of conversation in a long time. Still, there is a suddenly empty feeling I didn’t expect.

A void in a spot I didn’t know was there. Only one of the people that brought me into the world is still here, and she doesn’t recognize me at all.

Anyway, for those that saw my previous post, I just wanted to update those people that wanted to know.

💕 Thanks for all the support you’ve been giving me at this time of difficult and stressful circumstances!


Here Comes the Sun(set)

I’m sitting with my dad, in the (relative) quiet and stillness of his room, at the foster care home where he is in hospice, listening to him breathe. 🍃

The death rattle has begun. It’s alarming at first, to hear someone breathing through the terminal respiratory secretions; it sounds a bit like he’s gurgling or choking. Shortness of breath and rapid chest movement are also present. Signs of impending death, sadly. 🌺

However, he’s sleeping fairly peacefully, so I’m going to just BE here with him for a few hours, as he transitions into whatever comes next. 🛤

I hope he moves on to a marvelous adventure! I think it’s good that we don’t really know for sure what happens after this life we’ve been given. It allows me to dream big for him! 💕


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!


The Long Goodbye is Coming to a Close.

Tonight I’m sitting in the hospital with my father, who is very ill, rather suddenly. Just a week ago or so we were remarking that despite his dementia and previous ills (he did have diabetes, high blood pressure, heart medications, but he has been off all medications for quite some time now), he seems remarkably healthy. He has lost a great deal of weight in the last year, but it’s not that unexpected in an 81 year old who has had previous illness. He’s unrecognizable if you didn’t see him during this last couple of years. But overall, we thought he was probably good to last quite awhile.

However, last night he was taken in an ambulance to the hospital after a fall. They say he has a number of ills, including severe sepsis, and congestive heart failure, all the arteries to his heart are clogged, he has a severe bladder infection, bacteria in his blood, etc., and they aren’t seeing his numbers improve despite lots of fluids and medication. He was also very agitated and trying to remove his tubes and catheter, etc. They suggested we should consider palliative care. We, as a family, agreed to take him off life lengthening medications and just keep him as comfortable as possible. Now he’s resting fairly comfortably, but they have said they think we are looking at hours to days.

He might surprise us all and pull through, but I don’t really think it’s likely. I’m as ready to say goodbye as I can be, I think, but I don’t think it will be easy. I just want him to be at peace. I think we all want that, most of all.


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.

 


That’s my community too.

The LGBTQ community is not “those people”. The LGBTQ community is part of my community.

I met my husband in a gay bar. (Well, technically we met on AOL, but in person we met in a gay bar.) We spent a lot of time there, over the next couple of years, with a group of good friends. We knew the bartenders, we knew the wait staff, we knew the people that performed in the drag show. Some of our friends were gay, some weren’t, some were a bit fluid on where they stood, and we shared a community based on enjoying each other, not on labels or who we wanted to kiss. Orlando’s mass murder makes me feel sick, that could have been any of us.

I went to college in San Francisco, during the beginning(ish) of the AIDS epidemic in the 80s. I grew up in Berkeley, also a gathering ground for gays and lesbians. I have/had friends, whom I love, who are gay, lesbian, bisexual, transgender, queer…. some of them I no longer know, but the good memories remain. They were part of my community, not anomalies to be singled out. Some are my friends that I interact with regularly, mostly on facebook, but nevertheless part of my life. Some of my closest friends even. Orlando’s mass murder makes me feel horrified, that could have been my community.

And, *most importantly for me*, I have a daughter who is queer. I have a daughter that loves to go out dancing. I have a daughter who loves passionately, with her whole heart, who I think feels exhausted and angry and heartsick and threatened, just for being who she is and loving who she loves. Orlando’s mass murder makes me feel devastated, THAT COULD HAVE BEEN MY DAUGHTER!! That could be my daughter next time. This is terrifying.

I have felt afraid just for being a woman, alone on a dark street.
I have felt afraid just for being a woman, walking alongside a construction site.
I have felt afraid just for being a woman who had maybe one drink too many, among strangers at a bar or a party.
I have been frightened, been molested, been raped, been angry and heartsick.
But, *never* have I felt afraid of being KILLED just for being myself, just for holding hands or kissing a person that someone else completely unconnected to us thought I shouldn’t.
It’s unthinkable, and yet it is unavoidably part of her life, and therefore part of mine.

What can we do, beyond exclaiming “This is terrible! This is unacceptable!”? What can I do, beyond being as loving as I know how to be, beyond sharing my feelings with you, beyond listening to your stories? I don’t know. I’m sure the universe will be telling me. I hope I’ll be listening for it, amidst all the noise out there clamoring for attention, amidst all the noise in my head.

“Imagine all the people, living life in peace … You may say I’m a dreamer, but I’m not the only one. I hope someday you’ll join us, and the world will be as one.” – John Lennon’s “Imagine”

Imagine. Peace. Love. Namaste.


RIP Prince, 4/21/16

Purple Piano

Prince’s empty piano

“I never meant to cause you any sorrow.
I never meant to cause you any pain.
I only wanted one time to see you laughing.
I only want to see you laughing in the purple rain.” – Purple Rain, Prince, 1983

Photo copyright of Aaron Gogerty (as far as I can tell)

Read this!  PRINCE: We all live on borrowed time

Piero, once again putting it out there in a way that we FEEL! I don’t know Piero, but many of my friends do, and he’s always got something very interesting to share. This is transcendent. Beautiful! Thanks Piero!

“…he was the soundtrack for our youthful expression, freedom, and love lives, and rebellion…” – Piero Amadeo Infante

Out of all the notable deaths this year (and it’s been a doozy of a year already, this 2016), this is the first death that REALLY hits me. When I think of my Senior year in High School,  a year that spanned 1983-1984, I think of Prince. I have so many memories that are wrapped up in his music, from that year and many others. Really sad about it. He was only 57!! That hits a little close to home too. Prince is playing on repeat all day today. Listening to the Purple Rain album, the soundtrack from the 1984 movie, and the 1999 album, and they are totally making me cry. All of Prince’s music (and the songs he wrote for others) was a major part of the soundtrack for my high school and college in general, and so in the end, a partial, but important, soundtrack to my life.

A sad day.


Being a Girl: Reflections

My reflections upon reading this blog post: http://bellejar.ca/ writes about Being a Girl: A Personal History of Violence. It’s so important what she wrote, I hope you read it!

This rings so true, that I cried! . . . I cried a lot. I cried for the author, I cried for myself, I cried for my daughters and my friends.

So many of these examples are ones that made me say “Oh! Me too!”… Sometimes “Oh! Me too!” is a cry of joy, in recognition that someone, somewhere, is experiencing what I experience, and I feel a kinship that transcends the fact that I don’t know them, for we “belong” in some way. But not this time.

This time, “Oh! Me too!” feels like a cry of pain and dismay, in recognition that someone, somewhere has experienced what I have experienced, even if the details are different, and I feel a kinship that hurts because we both hurt, and our stories are not unique, they are all too common and this is the world we all live in together.

There are so many ways in which the world says “don’t be assertive, don’t talk back, don’t stand up for yourself, don’t tell, don’t be so sensitive, don’t demand equality, don’t demand justice, don’t think, don’t show yourself, don’t own your sexuality, don’t be a girl, just … don’t be.”

In my life, I’ve been repeatedly molested, I’ve been date-raped, I’ve been assaulted, I’ve been emotionally and physically abused by people that “loved me”, I’ve been shamed, I’ve been abandoned, I’ve been threatened with death threats, I’ve been stalked, I’ve had things taken from me that should have been mine to keep or give by choice, I’ve been humiliated publicly, I’ve been taught to be afraid of being seen, I’ve been ashamed and afraid to tell people my truths about the violence in my life.

I’ve been practicing this, this telling my truths, for a couple of years now, and still it’s terrifying. But this FEAR is not how I want to live my life! This fear tries to tell me I will lose my family, I will lose my friends, I will lose my dignity, I will lose my self. But the reality is that telling my secrets, and re-defining how I will live my life and who will be in it, actually gives me so much strength and confidence and a new sense of dignity and integrity that I wasn’t able to find in myself before, when I was scrambling to hide in the dark.

So, bring on the light! Shine the light into these dark corners! I will redefine what it’s like to be a girl and maybe I will help someone else do the same thing. Because seeing someone else who is willing to tell the truth makes it that much more possible for the next person. So, I’m saying to myself and to you: STOP HIDING!!!

Thank you to my friend for sharing this post on your facebook page. Thank you for noting that it was 99% familiar to you. Thank you for pointing out that most women have experienced similar things. It made me read it, and it prompted me to share it as well. Much love.