It’s been a minute since I sent out a missive. When a lot is going on, I think I tend to step away from my blogging, fill it in with journaling, but my introverted nature takes over and I get quieter.
Where to start? Well, my labs from this year’s physical came back and Doc PCM was very pleased with my numbers. GGT came down by 110%, just a hair on the high side, but trending down so more more freaking about about liver function panels, etc. Seem me and my liver are mostly fine! So that was excellent news! Vitamin D, B12 excellent levels, cholesterol came down. The last bit to close that business out is a retest of my TSH and T4 in November to see if a change in my Synthroid might be needed, and that’s easy.
I had the requested thyroid ultrasound, and the report notes ” no nodules seen, finding consistent with Hashimoto’s Thyroiditis.”
So the next adventure will be me submitting a request for a specialist (Rheumatology maybe?) for pinning down that EDS diag-nonsense. According to my PCM (and therefore she who is the primary traffic director) it boils down to a lot of blood tests and my plan of care won’t change much, but (like I told her) my doctors like to have a diag-nonsense they understand. It doesn’t change my life, my care, or how I’m managed right now. I already have “benign brain neoplasm”, “left total hip replacement, Nov. 2007”, and a couple of other CRPS-type diagnononsense, so I get it.
But I know the docs like to have something to pull together all of these different surgeries, pain management, brain tumor, implants, etc. They like it when I have a diagnosis they understand, even if it doesn’t change much for the patient. And with a few of my doctors bringing it up to me, it was worth diving into research.
I don’t do Dr. Google or WebMD…..I read academic papers, case studies, research papers. And when so much fits, and I have 2 of the docs I see the most saying “yeah, go check it out.” I requesting the referral. So, that’ll be my next project.
So I guess that’s all the Xunnie medical updates:
Yearly MRI w& w/o contrast on my brain: Tumor is still there, stable in size. kthxbai.
Yearly physical: good labs, retest T4 & TSH in November
Thyroid ultrasound: measured, noted “Findings consistent with Hashimoto’s thyroiditis. No discrete nodules noted”
Still a brain tumor patient, still interesting to ortho surgeons. But strong and doing better this year.
My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.
It isn’t just my youngest starting high school, it’s just that my youngest is starting public high school and I have been Homschooling her for the last 8 years. So yeah. Big change! BIGBIGBIG changes for both of us.
So after 8 years, it seems I am out of a job, relegated to “just mom”.
It’s good stuff for her, and I am so excited for her to make friends and join clubs, all the good stuff out there!
But as for me, in the quiet, at the end of the day, I stare at the wall and I wonder. Do I freak out? How much? Should I?
My youngest is my rainbow baby (and if you get that, I am so very sorry), she walked early….9 1/2 months old, 2 feet tall toddling ….walking all over the house.
Now at 14, she’s thin and tall…just a couple of inches taller (*spoiler alert: I am not, repeat: NOT surprised my kids taller than me.
And in my middle of this, I try to remind myself to be grateful, #blessed, we are thankfully able to get through all this.
I don’t have to look far to see that people are struggling.
Danny (my MIL’s son) had to have a quadruple bypass, then he had complications.
Nick, a family friend, motorcycle wreck last week , had to have surgery and has rehab and PT coming up.
Another friend , Danny, had ACL surgery.
Jeff had rotator cuff surgery,
Destiny got diagnosed with a brain tumor and is getting fitted for her mask for radiation therapy (a process I’m familiar with….I did it 3 years ago this week!),
and hub’s Aunt Connie passed away (sudden heart attack).
And finally, one of my favorite people just had her Dad move back in. He has advanced lung cancer. He’s a hell of a fighter.
I see all the struggles and I know how hard some of these things are to fight through.
My heart hurts. Reach out. #Loveoneanother. #Connect. #Support. Don’t wait…..tell them they’re important to you.
Hugs, love, positive energy…..<3 ~ Xun
There’s a lot going on in my life right now. My oldest is living with me for a bit and getting her classes and clinicals set up for the upcoming semester. She has all 5 of the next semesters planned out and then tah-dah!! She’s off to be a radiographer extraordinaire! And my youngest has decided to make the leap into public high school, so that’ll be the biggest change for her (and for me!) (Seriously….ahhhhhh!!!! If you want me, I’ll be in my blanket fort!!)
I’ve shared all of this before, but on the heels of all this stuff, it also be time for the yearly check up. Kid goes tomorrow, probably need a Dtap booster and we want to get the Gardasil and she’s a happy and healthy kidlet, so she’s gonna be just fine!
Me? Well I started today by getting my lazy-wanting-to-crawl-back-under-the-covers bootie up and over to the clinic so the could pull my “fasting labs” before MY yearly check up next week. So that was 7 (seven!) vials they pulled today! I’m pretty sure I should have had a cookie and some juice before I left.
But I am seriously the world’s easiest stick:
I was just surprised it was so many vials! But I’m an easy stick, no rolling veins or trouble finding one. Stick, get the blood, BOOM done!
Then after dinner, I was sharing news about my friend’s dad had a heck of a scare last week and I spent most of last week praying for her and her family and thinking “I just really don’t want you to have to join the club.” (Grey’s reference)
There’s just so many of us that have lost our dads already, and far too many of those come from cancer, and I just…..I believe in miracles and I wouldn’t want that experience for anyone.
So I have been thinking about my friend, and sending good energy out in her direction.
I’m still technically a brain cancer patient, but I’m stable right now, no changes etc. But my friend’s Dad had a really scary afternoon last week and came back from 2 (TWO!) cardiac arrests and was busting out of the hospital 4 days after and asking to go to the local VFW Friday Fish Fry. And the whole thing just sat me down.
I’m still a brain cancer patient, but I’m stable and still fighting for my independence. I’m down to 3 doctors these days and doing much better than a year ago (when I had MRSA). I just mean I understand both a patient, and as a daughter who did lose a Dad to lung cancer 5 years ago.So I’m sitting in my living room, mulling things over, and feeling like I should share and I look up….
A Sailor’s Wife on the wall, a gift from my sailor when he retired out of the Navy after 24 years. My incredibly cool cherry blossom tree card I got for Mother’s Day, Deadpool…..because Marvel, and our newest incredibly cool thing in the house: a 3D printed moon that lights up from the inside.
Sometimes I just get sat down bust by looking around, thinking about stories we share with other people, or they share with us. Seeing something you can relate to…..sometimes there just are no words.
But this week I found some perspective, something to be grateful for, a lot of hope for,a couple of tears, and a question for myself.
My friend’s Dad went into cardiac arrest twice , he got CPR and the paddles and he fought back. He came back. Could I have done the same thing in his shoes? I’d love to reply to that question with a snappy “yes!!”, but I’m not so sure.
If anything, it certainly shows that the will to fight is just as strong as any chemo, surgery, or medical intervention. Don’t get we wrong, one of the reasons he survived was because he was in a place the allowed him to be treated while they called the ambulance and got him to the hospital.
But hearing how things happened certainly gave me pause. I’m a brain cancer patient too, but I am stable and doing pretty good right now. So I send my heartfelt prayers, and love, and hope to that family. And I hope I keep in mind that the will to fight is just as important as any IV, scan, drug therapy, or surgeon.
Sometimes, the fight seems it might just be a little bit more.
My oldest used to get really frustrated with me because I wouldn’t tell her much about my childhood or who I was before I was “Mom”. It’s not her fault. I had kind of a tough childhood, and somethings I shut out, others I chose to try to forget….you get the idea.
My biological father bailed when I was 6. But I did have 2 other guys that sort of stuck around longer and were Dad-like. The first was my first step-dad and he was around until I was in high school. Not a bad guy, but he had his own demons; and, as my mom would say, when he dropped the ball, Ron (my Dad) picked it up.
Ron was my kids’ Grandpa, he was in my life longer than anybody else dadlike, and he was my *Dad*. He taught me to drive a stick, he was the only Grandpa my kids knew, and he was the guy that filled the space that my father vacated.
I learned so much from him. Not just how to drive a manual transmission, or wrap a Christmas present. I learned everything that got me through 5 days in Georgetown going through radiation. Finding peace. Being still. Being quiet. Breathe. Center.
He died 5 years ago today, and not a day goes by that he’s still not with me in some way.
So, today’s memory is the time I cut my foot and he picked me up and carried me into the ocean. That was the day that I learned Hawaiian ocean water can cure just about anything! I still drive to the water when I need some calm, some peace, some clarity. But it’s the Chesapeake Bay these days.
1997? I think it was…I cut my foot, not bad, but I was being a baby about it and Ron swore I just needed to get out in the water. Me: “No,no, no! Salt water is just going to sting!!” So he picks me up and carries me out in the water until he’s at least waist deep and I’m screaming and laughing. Lo and behold, the next day my foot was at least 50% better. He was right!
I miss you Grandpa (dad, Ron, Kumu). I can’t believe it’s been 5 years! But I know you’re still with me, and my mom, and my kiddums! ❤
Ron L Obrey 7/6/1951- 6/23/2012
June and July are funny months in the Xunnie household. There’s always the changing of the seasons, graduations, etc ; but we also have the anniversary of my Dad’s death coming up (06/23), what would have been his birthday (07/06), and the anniversary of what I call My Line in the Sand(07/17).
And now, three years into this, we have the anniversary of my diagnonsense. My brain tumor was found because I started falling down the stairs as some kind of a hobby and I complained to my pain docs about more headaches, so she wrote me a referral to a neurosurgeon who ordered the first MRI. I then saw who has become my steady spot in all of this, my neurologist, who then made a face at me and ordered a second scan. And then it was confirmed on June 20, and the next thing I knew I was headed up to Georgetown for half my Summer.
Yes, THE Georgetown hospital. And the coolest thing (is there is such a thing)? My “team” included the HEAD of Neurosurgery and the HEAD of Radiation Oncology. I don’t know how I got so lucky, but I must be an interesting case and I’m grateful for it. But yeah, that was a tough Summer. My son was deployed at the time, so I couldn’t tell him all hell had broken loose and inside of 30 days we signed a contract to have our house built, my dog died, and I got diagnonsensed.
June 23, 2012 my Dad lost his fight with cancer and June 20, 2014 I got diagnosed with a brain tumor.
The point of all of this is:
- I did, in fact, get this year’s results and the tumor is “stable with no change in size”.
- I realized today as I was telling my oldest daughter a story about the time my Dad came to Michigan and they didn’t know what to make of him that I have all these images and memories that my kids don’t get to see the way I did. They’ve heard the stories, but they were so little, they don’t remember.
The story I was telling my daughter was: Grandpa was so dark skinned and we’re all fair, blue-eyed, etc so when people see my kids run up yelling “Grandpa! grandpa!” they don’t know what to think. When he visited San Diego, they thought he was Mexican. When he went to Egypt (for work) they thought he was Egyptian. But in Michigan, USA, this lady could not figure out what was going on. (It sounds terribly racist, but when you see his reaction, it’s just funny!) So, as she’s following us through the grocery store and staring, he turns to me and says “if she doesn’t stop it, I’m gonna run over there and kiss her!”
No, he didn’t take himself too seriously.
My daughter smiled and said “I’ve always heard the stories, but I don’t remember….”. All I could think after she went to do her thing for the rest of today and as I’ve gone through my day was I wish I could close my eyes and show them.
Buzzfeed famously has all these ridiculous “What Superpower Should You Have?” or “If You Were in the Marvel Universe, Who Would You Be?” quizzes and lists, but if I had a superpower, I’d want to be able to close my eyes, hold your hands, and show you a memory. I have all these amazing memories and with the 5th anniversary of his loss coming up, I’ll write another blog with some of those. But, God!, what I wouldn’t give to be able to show you.
Hear the music, feel the wind, feel the joy, see the laughter. How much would you really love to be able to do that?
I’m just having a day ….or something…..this week.
I’ve been blue for the last 5 or 6 days. And when I say “blue” I don’t mean maybe feeling a little sad or down. I mean I am literally, actually blue.
I’m kind of used to it. It started about 9 years ago after I had pneumonia in both lungs 9 weeks after my hip surgery. I can feel it happening, and sometimes it’s stress (I’ve actually had retired-chief look at my hands and walk away in the middle of an argument), or weather, or exhaustion. Or sometimes nothing at all.
I’ve seen more doctors than I can count about it and since these days my pulse ox seems to stay above 95%, they like to just throw it in the Raynaud’s bin and move on to stuff like me choking or the annoying tumor in my brain.
Sometimes it’s not that big of a deal, and I come up with all kinds of colors between pink (I’m pretty sure the color I’m supposed to be) and blue….or purple. The running joke in my house is that I should lay on a table outside for a Halloween “decoration” with just my blue feet sticking out and scare the crap out of people. Yes, we’re an interesting bunch.
I’m just annoyed because I have been really, really blue for the last few days. It’s probably all the crazy weather we’ve been having and today we have thunderstorms moving in and through my area, and that’s almost a surefire way to trigger a blue episode in my hands and feet.
So between my blue fingers and the fact that FedEx lost a box I was supposed to have delivered yesterday, I’m just irritable. (The box was marked “delivered” at 6:01 pm, EDT but unless it’s invisible it’s not on my front porch.) Side note: I called the company and FedEx, got a refund, and put a trace out, but the FedEx delivery for my area are just idiots anyway.
And I’m kind of chewing on the fact that I think I might have made my mom cry yesterday but I didn’t mean to. We were talking about my tumor and I said something about how long I have left and she had to go, but I think I upset her. Because I’m an asshole even when I don’t mean to be.
And fuck cancer.
My outfit today. Because Deadpool. And because fuck cancer.
Aaaaaand I’m back to coughing shit up. The cough has never gone away, and my pulmonologist gave me “dysphagia, related to trigeminal shwanomma” and blew me off with “sit up when you eat and take smaller bites”. I don’t have a $200,000 medical degree but I could have told you that, so whatever.
Like I said, I’m hostile today. And this is all the noise in my head.
Anybody know what it means when you cough dark green….something up?
Fair warning, this one’s been kicking around in my head for a while, so I decided to go with the brutally honest approach. Not something we humans do often or well…..so look away if that’s too much. I hope you won’t because I think we all could use a little introspection sometimes. I know I can. And maybe you’ll learn something, or ….well, I dunno something good.
Oh, but first updates:
Dr Lungs has given up on me. I got the results of my PFT (“normal” or whatever that means), and got told “dysphasia patients have this issue sometimes. The coughing, the breathlessness, the productive cough; it comes with the swallowing dysfunction. Your next step would be a speech therapist for occupational therapies. Good luck.”
Yeah, same to you too buddy. So, this is how it ends. I guess I choke on a spoonful of frosting or fall down the stairs. (Or both! I’m an overachiever!)
Appointment with pain doc next month, appointment back to neuro in May to keep an eye on the tumor. And now it’s time to go bug my PCM because 2 of my other docs have told me I quite possiblely have EDS (Ehlers Danlos Syndrome). It fits. With my prior dislocations and hypermobility (I can cross the bones in my forearm), it’s a distinct possibility I’d finally have some answers.
Now on to the harder stuff to write about and the reason for the title. In the cold light of day, I’d pull my sleeves down, look at the floor, and mumble “I’m fine.” I’m a solitary person, terribly introverted, and unusually prone to stoicism.
But in the quiet dark, late at night, away from too many questions and judgements, I am self destructive. My arms bear the scars of me trying to take my pain out on myself. Those scars are from many, many years ago but when I am overcome with grief and pain I hear the girl responsible for them whispering to me.
Last week I put out a post that was password protected because I needed to get pain out and away. But I wasn’t sure I wanted those words just out in the public eye. And the next day, the cold light of day spoke up, and I deleted it. I guess you could say this is the follow up.
Because I have been chewing on, pondering, turning it over and over in my head, contemplating grief and mourning.
Thirteen months ago, on January 20th, I got the phone call telling me we had lost my sister in law Brenda. But what I would come to learn by the end of that day is that I had lost 2 people.
Brenda died, and someone I love very much walked out of my life….threw me out of his life, without a discussion, or an explanation, or a chance to apologize. He was angry, he still is angry, and for the last 13 months I have staggered through denial, and bargaining….pleading with him to talk to me, along with depression weaving its way through the days and weeks and months. Bouncing back and forth between 3 of the 5 stages of grief. Mourning a loss because of a change, not a death.
I have spent 13+ months now turning the whole thing over and over and inside out, trying to understand. Patiently waiting for a chance to talk, to straighten it all out, to apologize. I’m trying to understand.
I know my culpability in the whole situation. I would be the first one to tell you how profoundly flawed I am. The mistakes I have made stay with me, the times I made the wrong call, the moments in time I wish i could go back to and make it right, make it better. I know I am flawed. I know when I’m wrong.
But I also know that when I know better, I try to do better and be better. I learn. I work at it. I try. I hope. And I love completely and unconditionally. I am not perfect, but I am real, and I am honest, and the mistakes I made were never deliberate, never meant to hurt someone, never meant to hurt him.
I spent a long time angry at my mother for my childhood. But as I grew up and went on to have kids of my own, I realized in the process of letting go and forgiving her that 1)when she knew better, she did better. No one can fault someone for not knowing better. and 2) I wasn’t exactly the easiest kid in the world to raise. My mom did what she could with what she had.
I got caught up in the searing pain in my chest as I heard the words that my son didn’t want anything else to do with me. The agony of watching him “block” me on all social media, refuse any contact, or allow me any part in his life. I got lost in denial, bargaining, and depression swirling around me and through me.
The pain, the hurt, the visceral agony in my chest gave way to disbelief, bargaining, pleading, hoping, writing to him, apologizing. Months rolled on, I survived 2016 (mostly), another holiday season…a little more rejection.
The anniversary of Bren’s death reminded me I had lost him too.
And oh Gawd! this hurts.
The clock marches on, the sun rises and sets, another cycle of the moon, I keep thinking.
After 13 months I move forward, just a little bit. baby steps.
I forgave my mother. I own that I was not the easiest damn kid to raise. I forgave my father for walking out and choosing over and over to stay gone. When he died, I was at peace, because I had forgiven him.
My husband cannot seem to get his relationship with his mother to move forward at all. She can’t or won’t grow or try. She won’t apologize. They can’t connect.
I am living with an inoperable brain tumor, but that’s not what drives me to try to learn to be a better mother. I try to learn how to relate to my kids as they get older and my role changes. I apologize when I’m wrong. I try. I hope.
I know I have made mistakes. I know I made the wrong call sometimes. I know I am nothing close to a perfect woman, wife, mother, daughter, sister, or friend. I do know that.
And I guess embracing that means I move just a little bit further as I grieve a change. Is it anger? I’m not sure. What I do know is I have reached a place that tells me, that even with all of my mistakes and imperfections, there are some things I don’t deserve.
I don’t believe that I deserve the way I have been treated. That’s not an easy sentence for me to type and put out there. But it is the truth.
It’s the easiest thing in the world, right? Just inhale and exhale. Take a breath. Coming up from underwater, you break the surface and take a breath, filling your lungs again. Close your eyes and sleep, all the while breathing without thinking about it.
Breathing is one of those voluntary/involuntary actions we have. We can choose to fill our lungs, or blow out as much air as we can. We watch a movie, laughing or crying, and still breath without thinking about it. Diving under the water, we close our windpipes, holding our breath, and then pulling air back into our lungs as we break the surface.
I have spent almost a year now (yet again…..long story, I’ll share that one in a separate blog) just trying to breathe. I thought it started with choking on chocolate milk and the subsequent MRSA infection in my lungs and my throat, but since I have had a cough for almost a year and I’m still coughing up green……yuckshitohmygodyuck… and they can’t find evidence of a persistent group of staph that may or may not have set up a new village, we’re still playing the “Do Xunnie’s Lungs Exist?” game. (Or maybe there’s a tree in Xunnie’s lungs?)
Today’s adventures were going back to the pulmonologist for a lung function test. This is the follow up to the seeing my neuro about the still coughing and occasionally choking (yes, that’s related to where my tumor is), then sent to pulmonologist because I’m still coughing, who sent me back to my neuro for a swallow test (yuck), which said yes my tumor is responsible for the dysphasia so neuro sent me back to pulmonologist (can we just call him Dr Lungs to save time?) who read my file again, made faces, and ordered my function test today. (Are you keeping up? Fortunately my neuro & Dr Lungs are across the hall from each other.)
Which brings us to right now. I’m still coughing (and coughing up green uck), so today they stuck me in a tube? chamber? thing, plugged my nose, and yelled at me to breathe really hard. Not fun. So I promptly came home and started coughing and lost my voice. Again. Time to brush up on my ASL anyway.
So we’re waiting for lung function test results. I just want to stop coughing shit up, but I’m pretty sure this is the next stage of my tumor.
I’m going to die by choking on frosting.
People always get stuck on the last thing….the last time…..the last words, when someone they care about dies. You can use all of the expressions; passed over, passing on, gone to Heaven, going home, shedding this mortal coil. But it all means the same thing. They have died. Their spirit moved on, the shell is left here. Ashes to ashes…
What was I saying? oh, right! The last thing. We get stuck on the last thing. The last moment he/she/they were “just fine”.
“We were making _____ and then he was on the floor.” Seizure, heart attack, diabetic crisis, choking.
“I just saw him.” “I just talked to her.” The last words. The last thing, the last time you saw them.
In the blink of an eye, they’re gone. Sometimes it’s quick and unforeseeable, accident, heart attack, suicide. Sometimes a long illness finally takes them. Even if it seems like they might survive, and then…..gone.
2016 took a hell of a lot of people. And some of the people that inspired this thought train that I’m pouring into my keyboard were included in that. But not all of them. Right now, there’s a big outpouring of grief and support for a 4-year old little boy that just died from cancer where I live. That makes 2 kids I’ve heard about in the last 6 months that cancer claimed. The other one was a 2 year old little girl.
I guess I’m just chewing on my own experience with losing people I care about. I think about the last thing I said, or the last time I saw them. For my Dad I told him how much I loved him, for Bren I messaged her “I love you”, my first step-dad I hadn’t talked to in over 2 years and I regretted that more than I can express in typed words, and an old friend died a couple of years ago and the last thing I said to him was in anger.
The end, the unimaginable, the quiet closing of a chapter will happen. And I don’t want to make the same mistake of not saying the important stuff, or of saying something in anger again because I know how much the regret hurts.
I know the clock is ticking. I’m living with an inoperable brain tumor, and for the first time my husband wasn’t able to immediately wake me up for my morning thyroid meds (I guess I kind of freaked him out when he couldn’t wake me up, but clearly I have woken up and I’m not quite dead yet)….but it was a wake up call. So to speak.
Don’t wait. Say I love you, tell them they matter, you just never know when it could be the last thing.
One year ago today my sister (in law) Bren passed away. I miss her all the time.
We were so much alike sometimes, and so different in other ways. I loved her so much …
…but I was the one to kick her ass sometimes too. We went back and forth. Fighting and walking away, but as close as sisters. When her kids were smaller, she wanted me to be the one to have guardianship of them should something happen to her. But, her kids were 20, 21, and 22 when we lost her so they’re all grown up. And I’m not in their lives the way I used to be, the way I should be, the way I wish I could be sometimes. I miss the days of her kids and my kids running through the house.
Distance and time changes things. And people. But through all the miles and years, we found our way back when we drifted apart, even if it was just a text or a message when one or both of us was on the move.
The last thing I ever said to her was “I love you” and I hold on to that when missing her brings me to my knees. I’m glad that was the last thing she heard from me. And I’m grateful that was the last thing I got to say. Too often we lose people without having said the good stuff the way we really should have.
I got the phone call the next morning, about 16 hours after she died. I still have the voicemail on my phone…..for a couple of reasons. But mostly because I don’t want to forget. I don’t want to forget losing her, finding out she was gone, and how I felt.
I spent the first few days just kind of wandering around the house, just trying to realize she was really gone. It was like a punch to the chest.
Two weeks later I spent the whole week trying to figure out if I should/could go up to Michigan for a memorial. Part of me still thinks I should have gone. But instead, I participated from here…
I sent a white balloon up, telling her to be happy and free. I sent hope and love up through the clouds. A few months later I got a tattoo of a hummingbird on my left calf, inspired by the losses of her, my Dad, and a few other people. I also have “ana’laigh” tattooed on my left forearm, Gaelic for “breathe”. Inspired by Brenda, and part of my own story as well.
It’s taken me most of the last year to wrap my head around the question “HOW is she gone and I’m still here?” (ridiculous, I know, childlike….but stay with me….). But what I know now is that even if my loved ones ticks stop tocking, it’s not my time piece that’s affected. Her loss taught me more about going on after the death of someone I love.
She’s still with me, but I imagine her finally happy, and free, and feeling loved the way she always wanted (and needed) to be. I talk to her a lot. I miss her. She’s dancing on the clouds, and because I knew her….I am changed for good.