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 make a fantastic villain in a lot of other people’s stories. I’m not sure if it’s because I’m a redhead….or maybe because I’m a Scorpio. Or hell, it could just be because I’m an only child and it’s gift. Whatever the reason it is abundantly clear I am an awesome villain.
Need a screeching ex-wife? Call Xun! Does your day call for an asshole ex-friend? I’m available! Witchtastic daughter-in-law? Evil ex-girlfriend? Asshole you used to know? I’m your girl!
1-800-call-Xun for ALL of your villainous needs!!!
References and prior engagement details available upon request!
(Clearly I am struggling with some stuff these days, probably part of the reason I am been pretty quiet on the blog lately. But seriously, you should see some of the word art in my journals, all wrapped around the word “villain”. Perhaps that should be my next ink.)
A sampling of my word art/journaling. Clearly I’m working on something.
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.
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.
Is “Life as a ping pong ball” too long of a title for the blog entry? Yeah, I kinda thought so, which is why it’s just “Ping Pong”.
A couple of weeks ago I updated with having seen the pulmonologist who bounced me back to my neurologist, thinking the cough, choking, etc could be related to the brain tumor which happens to be hanging out on/near the left 5th cranial nerve which likes to control swallowing. So, in short, pulmonologist-doc thinks it could be neurological.
I bounced back to neurologist with this info, and after a bunch of insurance and referral bullsh…..stuff, I finally got the swallow test scheduled. Because how much fun does being put under a fluoroscope and given barium to swallow sound like?! I know…..I know…..calm down. You all can’t have allllll my fun.
Anywho, next week (the 15th) I have the modified barium swallow test scheduled. Which, I think means they’ll try to see if they can make me choke? or something? And neurologist-doc says “I hope it’s not neurological” and if I pass? fail? prove that it’s not neuro, then I get bounced back to pulmonology.
It’s just been a hell of a year, hasn’t it?
2016 has been rough. For a lot of reasons, and for a lot of people. Tis the season to remind everyone that they matter, and send goodwill and cheer and all that. Please don’t think that I don’t. I’m just kind of stuck myself. By February, I began to wonder if I was going to live through the year. So many losses, so much hurt and heartache this year.
And sometimes I just get so tired of trying and fighting and this insane purgatory of too-much-of-this-and-not-enough-of-that. I have a brain tumor, but it’s not terminal. I’m sick, but not critical. I’m well enough that I’m expected to do most of what I did before I got sick, but I’m afforded time if I need it. I’m exhausted, but still functional. Too much of this, not enough of that. And I live in a world of a constantly changing pain scale.
In pain, but most of the time I manage.
Sick, but (usually) well enough to function.
Disabled, but (usually) capable. Sick, but not infirm. Pain, but only so much.
Life as a ping pong ball. So, yeah, occasionally I hit a wall.
My body, my mind, my heart hurt so much sometimes I can barely breathe. So I remind myself to.
In a world full of hard surfaces and sharp edges, sometimes I wonder why I fight so hard through the pain. When it all feels too big, and too hard, and it hurts too much…I keep fighting.
I’m hurting, but I’m trying. I’m a ping pong ball.
2001 was the worst year of my life. For a lot of reasons that have nothing to do with the events of September 11th. I don’t know if it was a gigantic cosmic “kick me” sign or Hell I just got lucky, but my family simply sums up the year with “death, lightening, and taxes”.
But none of those stories relate to today’s post.
September 11, 2001, I woke up to the phone ringing. I had been out of the hospital for about 6 weeks and was still recovering in a lot of ways. My kids were at school 6 blocks away and my husband was out of the country. So having gotten the kids up and off to school, I laid back down to rest.
The phone was ringing and ringing as it woke me up. I reached over and answered it. An old friend was calling me. “Is your TV on? Have you seen the news?”
“What? No. Why?”
I get up and go turn on the television, bringing the phone with me into the next room. The picture flickers on just as the first tower falls.
WHAT the hell???!
After the first plane hit, in the confusion, we all thought it was a terrible accident. Then the second plane hit. And the world as we knew it, the world as I knew it, stopped.
The first thought through my head was: Oh my GOD P’s in Europe. He’s okay.
Immediately followed by: Okay, we live 20 miles from the base, out in the middle of nowhere, the kids’s school is in the subdivision and I have a grocery store a mile away. We are going to be okay.
My husband was Active Duty Navy Aircrew at the time. And the reason the first thing I thought of his location was because of the type of duty he had at the time meant that he typically spent more time in Washington DC than where we were stationed in Jacksonville, Florida. He was in Europe and had no idea what was happening.
I spent the rest of the day juggling phone calls and watching the next six hours unfold on the television. My family was over 5000 miles away in Hawaii. His family was in Washington state. His crew was met by somebody’s somebody that handed them a SatPhone and informed the crew they were being fueled up and sent directly back to the States as soon as their wheels actually touched ground in Europe.
He called. “I’m okay. We’re okay. I’ll see you soon.”
I have spent the last 15 years being so angry that we were lied to. I wasn’t in New York, or Washington, or Pennsylvania. I didn’t bury a loved one because of those events, but I have cried. And I have been angry.
So angry that I didn’t realize that I never really mourned the lost souls. I never grieved. Grief has 5 stages. I stayed pretty much at angry.
Until I read this: Ground Zero
Go read it. Take the 20 minutes or 45 or however long it takes you to get through it.
And then ask yourself the same questions I found myself pondering: Why in God’s name do we build a museum? Could you go through that museum? Would you? Are you still angry? Have you grieved? Can you close your eyes and see it all happen? Has it really been 15 years??
Every year I mark time in my head. Wait, that’s not right. What I mean is some years it’s quieter, and some years it hits me harder. But July 17, 2001 is the day my before became my after.
After 9 days in the hospital and my doctor finally realizing my hematocrit was 6 and I was septic, she panicked. She made *the face* and sent me by ambulance to the local trauma 1 center. With nothing left to do but try to save me, I was induced and delivered my baby girl at about 19 weeks gestation.
My doctor was very kind and my nurses were amazing. I know I was the biggest, whiniest pain in the ass because I had blown every IV site in both arms and was down to my last site in my left hand with an 18 gauge needle, which wasn’t ideal. And every 4 hours the antibiotics burned going in. But they were patient and compassionate and I will forever be grateful.
Looking back, I now know I had PTSD from the whole thing. I didn’t know it then, and I’ll save the details, but I had nightmares for a year and a half after I got out of the hospital. I slept with the light on for over 6 months, and I didn’t eat or sleep much for the first few months. I fell apart.
It’s been 15 years. That’s hard to believe, but I came back from the hardest, darkest part of my life. Mostly. You never really recover completely.
But I’m alive and I’m grateful for the kindness of the nurses in the post-surgical ICU at Shands Hospital in Jacksonville, Florida. Thank you for saving my life, and thank you for your compassion and patience.