Monday, August 9, 2021
Before I start this blog I have a few "housekeeping" items to address. I know it's been a while since I blogged and I still have not fully expressed how it feels to be told "you are cancer free" and I have a whole lot of fun to share with you concerning ER visits, hospital stays and colonoscopies...but the other day I was struck with the "feels" and felt like sharing this instead. What I want to drop in here has to do with the term "woman". When I say "woman" I mean ALL women, not just those who's assigned gender at birth was "female" which goes to say that I also believe that trans women are "women". My blog: my opinion. I know many of you will not agree and what I ask of you is before you pass judgement if you do not know and have a relationship with a trans person it is very difficult to understand. I have trans people in my life that I deeply care about and love so for me the issue of trans is a non-issue. So I may say some things that sound odd like "born with female organs" and that is why...and, because I am human, I may say some things that don't directly represent the trans community because I write as a stream of consciousness.
Also there will be some very frank discussion here about body parts and things that happen when you are sick...this is not for the faint of heart...so if you clutch your pearls at the mention of diarrhea then you better skip this blog...because there is that and more...
My blog: my opinion
so to all the women out there---I salute you...ALL women...
After being sick for most of the summer I am finally starting to feel like myself again. So a few days ago I felt good enough to get out and run a few errands: pick up a little lunch, go to the teller machine and pick up curbside groceries and carry them into my house and put them away...
As I was driving along I had my 70's radio station blaring and Helen Reddy's "I am Woman" came on and I, just as I did when I was a young girl, began singing along with the song.
I was driving and singing and then I realized I was crying...tears running down my face...
because that song has taken on new meaning to me over these last few years
In my youth it was an anthem of female empowerment and women's liberation...but the other day as I sang along I felt the lyrics in a new way and one that reflects how I feel having conquered cancer.
Recently I posted a quote that said "Nothing ever goes away until it has taught us what we need to know" (Pema Chodron).
And that my friends is how I feel about my cancer...
it's like it was with me for so long because it had so much to teach me about myself...about relationships...about what is truly important...about trust...about health...about healing...about listening when I needed to listen and questioning when I needed clarity...about grace...
grace with myself and with others (and with my poor poor doctors and nurses)
It was a long period of time not knowing whether I was going to die...whether I would ever be free of El Diablo...whether I would see and enjoy a future.
Because I wasn't lucky enough to come out of the OR cancer free...yes the tumor invading all (and I mean ALL) of my female organs was gone but there was still cancer lurking in those pesky lymph nodes...
But I fought on because I had absolutely no choice.
Because that's what happens when you are ill...you have no choice.
Oh yes I do realize that some people find that the treatments aren't worth the pain and loss and suffering and opt to rely on faith or just accept their fate and face the end of life with more grace than I could ever have but that was not me...
I wanted to fight
Because I know the second act of my life is around the corner (or maybe it's my third act? I'm not a playright so I'm not sure ok maybe we roll with third act if pre-cancer was one act and cancer was another and now post cancer...oh well I am getting lost in minutiae)
But I know I have more living to do.
So for all of you who think of me as a warrior, or brave, or whatever---if you were in my place you could and would do exactly as I did...you would find the best team of doctors for yourself and put your trust and faith in them and modern science and medicine. My fellow cancer warriors will agree.
I'm nothing special
I'm just a woman who got the hell jolted out of her when she was told "you have uterine cancer"...
I did what I had to do...
As the song lyrics say:
Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong (strong)
I am invincible (invincible)
I am woman....
That right there my friends is what broke me...what sent the tears down my face and new comprehension washed over me...
The lessons I have learned were born of such tremendous physical and emotional pain I could never have comprehended when my journey started.
And the price...
Oh the price...
Let's start with the "easy" stuff because the biggest price, the loss of my body parts, is the hardest one of all and some of you, especially men, might think it was easy...but nooooo....
Let's add up my "bill":
3 spinal fusions because my spine was weakened by radiation
Now I have this colitis situation which they think was caused by the very drug that saved me...
colitis that completely robbed me of and ruined my summer and I had to miss some very special events because of it...
the colitis has caused me no end of loss of dignity...and I do mean loss of dignity...because at 2:30 am when you are too weak to clean yourself up after going to the bathroom (in a bedside toilet no less) because you are having to do a colonoscopy prep while you are very ill---yeah you give up dignity and you don't care who comes to help you at that point...and you cry...
I've had moments where I have had to reach for the adult diapers...not just with this colitis but because of things like radiation or medication...humiliating...
or times I have had "accidents"...once with my daughter present...
I have a hernia from my incision
I've gained so much weight because of lack of exercise from being sick and all the steroids that have been pushed into me trying to get me well and now joints aching with pain tied to the colitis so no exercise for me...just as I was proving I was a badass at physical therapy...
My knees are so much worse off than they should have been had I been able to have replacement surgery sooner
I will forever, and I do mean forever, have a left leg that is twice the size of my right leg thanks to lymphedema because of the cancer in my lymph nodes. It's not unnoticeable. My left thigh probably weighs a minimum of 5 more lbs just because of the fluid in my thigh. Fluid that will never go away. Fluid that I can push through and sort of get my lower leg under control but there is no good way for me to have compression on my thigh. And it shows. And it causes me to waddle as a walk and I might never wear pants again. A situation that will forever require me to be in compression every minute of every day except showering. A condition that will require that I use a compression pump every single day. Forever. It's not something that can be fixed, repaired, or reconstructed. I can't go in and have surgery and suddenly my lymph nodes will do their job and I'll have a normal leg again. It doesn't work like that. The bit of experimental surgery they do have is very risky and not very good and not covered by insurance so it's a total gamble.
I'm allergic to drugs now thanks to all the things that have been pumped into me...
And the one that is hard---I lost the very essence of feeling like a woman. I know women have hysterectomies every day but mine was a little deeper...a little more taken from me...things that are too private to discuss here but not only were my hormones wrecked but parts of me are gone that there is no repair for or reconstruction.
I'm being frank here...because a hysterectomy for cancer is a little different than one for other reasons. I'll just say " the cut is deeper" and leave it at that.
And all the cliches of menopause hit me at one time because I was not in full blown menopause when I was wheeled into that OR that day but I was when they wheeled me out...
And I could get more frank here and discuss that not having a partner also makes this difficult because honestly I don't know what I would be like romantically...I'll just drop that there and walk away and let you figure out the rest because it's too much and too transparent...
but I also don't want to shy away from the brutality this disease has caused.
(and God I live for the time when I don't feel the need to list all the things cancer has robbed of me...I'm sure y'all are tired of hearing it too...)
I've always found it ironic, and I have said so many times, that it was the organ in my body that gave me the greatest gift---my two kids---that tried to kill me.
I grew two full term humans in that uterus (and two angel babies).
Something I have never ceased to marvel at...I mean not only did I make these people but they are freaking marvelous
I never felt more like a "woman" than when I was pregnant...I mean I have always been a girly girl and I love pink and lipstick and heels and pretty dresses and being very feminine but being pregnant made me feel like I was connecting with my ancestors and all other women who had a human form inside their bodies...I felt like a woman at 28...
And it's also never lost on me that I have many dear friends who because of circumstance or health or their own body's issues were never able to experience the joy and incredibleness of having another human inside their body and I grieve for them. Infertility and miscarriage and stillbirth are painful and heartbreaking. For my friends who had their chance at having children robbed for them I feel a great loss if it had been their wish...and for my friends who became parents through adoption I feel great love that you were given the gift of a child to be yours...
All of this being said I don't equate being pregnant to womanhood but for me pregnancy was what made me most feel like a powerful strong woman---until cancer made me stronger (because I had a cancer that only someone born genetically female can get). Cancer made me more of a badass woman than anything else in my life...because I was fighting for me and all the women who cancer was robbing of our female organs...
Through the years I experienced many painful things: physically, emotionally, spiritually...
but none more so (other than the loss of my parents and dear grandparents and my "extra parents") than the brutal pain and trials I have experienced these last 5 years.
Spring of 2016 I knew something was wrong with me...I knew it...I felt it...things weren't "right" and it wasn't just pre-menopause. I was off. And I told GOTT and he said he would support me as I went on the journey to find out. When your work hubby says something like that you feel blessed...
What followed was seeing my General Practitioner, my gyno (with a clear pap smear that 6 months later there was cancer in my cervix), a cardiologist, a endocrinologist and an ultrasound of my thyroid. Then the bleeding started...and all hell broke loose and if you have been reading this blog for a while you know what happened next...
"you might have cancer" became "you have uterine cancer"
and there my life did the biggest pivot thus far
(and please tell me as you read the word "pivot" that the Friends episode with the couch and the staircase made you say "pivot" in your head like David Schwimmer...)
I had to pivot...
or in my theatre terms: PLOT TWIST
because leading up to it I was just a divorcee getting one kid off to college while the other one was finishing up and I figured it was my time to shine.
It was my time to shine.
But not how I had planned...you know, because of the plot twist...
I had thought I would find a boyfriend and enjoy being an adult in a relationship that didn't force me to alter everything about myself in some way.
And that's what happened...
minus the boyfriend part...
I had a relationship but the relationship was with cancer and once again I was having to alter everything about myself including my body after my beloved surgeon oncologist cut it all out
It was my time to learn all about myself and my relationship with ME and with others and with what was truly important in my life...
You can bend but never break me
'Cause it only serves to make me
More determined to achieve my final goal
And I come back even stronger
Not a novice any longer
'Cause you've deepened the conviction in my soul
And that was when I decided that I was going to beat cancer.
There was no other choice
I could sit around and wallow and worry and cry about it or I could put on my glitter and fight
So I fought...and trust me if you were faced with what I was faced with you would fight just as hard and as well too because YOU HAVE NO CHOICE
you can't wish cancer away...you have to fight it
So to all of you who so very kindly and sweetly say I am an inspiration and you admire how strong I am I want you to know that you have all of that inside yourself as well...just as strongly as I do...and I pray you never have to face it and do it.
I told Dr Rockstar that I was going to beat this unbeatable cancer. The one they can't cure but only keep you stable. The one that requires treatment all the time and no end. Because in 2016 that was my fate--I had the bad kind and only poison was going to keep me alive...poison from chemicals and from radiation.
I told her she was going to be able to say I am cancer free...I told her I knew I would hear those words from her...I told her she was going to be known as the doctor who beat UPSC
(and sadly I still haven't gotten to hear those words from her because she did a fellowship and left me in the more than capable hands of Dr Pretty so she got to say it...but this Friday I hear she is back and I have to go up for a port flush so I think I am gonna make her say the words...just because I need to hear them from her...)
I told her that she needed to keep me alive until science caught up with my disease and that is exactly what happened...I went from "you will need chemo for the rest of your life" to "immunotherapy saved me"...
I told her I was gonna beat it and get my knees fixed so I could live my life fully....and yes along the way some other things happened (see above) that will make it so I won't be quite able to do that but I'll be better than I was anyway...
Because you can bend but never break me...
and it only serves to make me more determined than ever
And you, yes YOU could do that do...but like I said I hope you never have to
Cancer really was a great teacher even if El Diablo was a total asshole about it...sometimes our best teachers are the ones we like the least.
I learned so much about myself---things that make me cringe--when I go back and read my old blogs about myself before the cancer and after my divorce and when I was all feeling myself thinking I was cute when I was thin and healthy...
I read those blogs and marvel at the ignorance about myself...me thinking that because I had lost over 100 lbs that I was really something special.
my body taught me that to live like that I couldn't enjoy myself and I had to work too hard...and then my body proved it was in control by making it virtually impossible to try to lose weight
because when your body is secretly fighting cancer it really can't be bothered about losing fat in your big butt...
And now I am trying so hard to lose the weight I have gained...just trying to get myself to a place where when I look in the mirror I don't want to cry...
the problem is some of the fluff (thanks to lymphedema which also affects my trunk and pelvic area) will never go away...and now all the inflammation is bloating me so there's that so I mostly avoid the mirror and just know that I can only do what I can do to try and be healthy.
I mentioned to my GI doc that I was trying to lose weight and God bless her her response was "you have other things to worry about...we can deal with the weight later...let's get you feeling better'...yes my name for her is Dr Guts and Glory...she's good stuff...
I am woman watch me grow
See me standing toe to toe
As I spread my lovin' arms across the land
But I'm still an embryo
With a long long way to go
Until I make my brother understand
And now I am ready to find out where my journey takes me that is outside of just cancer stuff...yes I will forever have to deal with some of the side effects of what has been done to me but I'm about to be a real live Jamie Sommers and be The Bionic Woman once I get my other knee fixed (I wonder if I will be able to leap on top of buildings...probably not but at least I will be able to walk!).
I'm ready to put what I have learned into action...maybe in a book...maybe by doing some public speaking and sharing my story and how I grew from it...I'm not sure what that next step is but I'm ready to take it and raise awareness about cancer (especially uterine), cold capping, and how positivity and believing in yourself can conquer impossible things.
I still have a long way to go to fulfilling my life's promise...God gave me my life and now I need to use it for good things...for positivity...for change...for awareness...for whatever He sees fit to have me do because I feel like He didn't save me just for me to clam up and and selfishly live my life and just say "ok that's done...next..."
God made me a woman so I could experience all of this...so I could experience something that only someone who was gendered female at birth could experience. Not the giving birth part (that was special) but so that I could lose the organs that some would argue biologically make me a woman (although I believe trans women are also female even without those parts). I needed to lose that essence of what I felt was my womanhood so that I could bring awareness to a disease that I knew no one personally had had so that maybe it got a few of you to the gyno...or a mammogram...or the dreaded colonoscopy...
because if watching me suffer scared you even just a little bit then it was a good thing...because I want you scared enough that you listen to your body and that you have your checkups and testing.
I want you so scared that you fear that drop of blood you see on the toilet tissue and you get it checked out...
I want you terrified when you feel a lump
I want you frightened as hell when something feels off and you know your body is not behaving...
I want you scared so that you act on it and you face it and you walk into that mammogram or suffer that colonoscopy prep or go to the gyno after 5 years to make sure you don't end up like me.
I acted fast but my body did not give me the full signals fast enough
You need to listen to your body and be scared so you call that doctor's office...and then I want you to face that fear and know you can handle whatever is placed before you.
Because you can do it...I did and so can you...
I want people to know that they have the power to do what I did...and I know not everyone wins their battle against this horrible disease---I've lost friends to many forms of cancer---but I want to be sure that all of you know that I'm nothing special.
I'm just a woman who was told she had to fight.
And so I did...
Because I am strong...
I am invincible...
I am woman...
And now, to quote not only the marvelous Helen Reddy but also Katy Perry: YOU'RE GONNA HEAR ME ROAR...
Get ready...I'm gonna make a lot of noise...help me be loud...
Inspiration Song: "I am Woman" by Helen Reddy...because I've been down there on the floor and no one's ever gonna keep me down again...no one and no El Diablo...and by the way people she not only sang the song---she wrote the dang thing!!!
Here are all the full lyrics not chopped up...it's powerful when you read it...
I am woman, hear me roar
In numbers too big to ignore
And I know too much to go back an' pretend
'Cause I've heard it all before
And I've been down there on the floor
No one's ever gonna keep me down again
Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong (strong)
I am invincible (invincible)
I am woman
You can bend but never break me
'Cause it only serves to make me
More determined to achieve my final goal
And I come back even stronger
Not a novice any longer
'Cause you've deepened the conviction in my soul
Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong (strong)
I am invincible (invincible)
I am woman
I am woman watch me grow
See me standing toe to toe
As I spread my lovin' arms across the land
But I'm still an embryo
With a long long way to go
Until I make my brother understand
Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to I can face anything
I am strong (strong)
I am invincible (invincible)
I am woman
Oh, I am woman
I am invincible
I am strong
I am woman
I am invincible
I am strong
I am woman
Bye Darlings...let me hear you roar...let my beautiful women friends feel all the womanly things about themselves and share it...and I'm gonna roar a lot more now because I feel like I need to ROAR more and share more to glitter up this world...I am strong, I am invincible...I am WOMAN
Tuesday, April 13, 2021
It has been forever since I blogged...and I still owe you a blog about being cancer free and how that all feels but honestly I am still processing all of it...but I promise soon to let that all out...
But today---today is my no good terrible hard day...
Because 16 years ago I lost my mom
My best friend...
My travel companion...
I am forever blessed that her sister, my Aunt Jane (aka the best person in the world) stepped in and has taken on all of that in place of her.
Honestly I am so glad my mom didn't have to see me go through cancer.
It would have killed or...or been a disaster--not sure which.
She would have been full-on Shirley McClaine in "Terms of Endearment" with the nurses if I needed pain meds...there would have been pounding on the counter and yelling at the nurses and Debbie would have been a terror.
She would have been hovering over me after chemo treatments and would have driven my oncologists and neurosurgeon crazy with questions.
She would have been pained to see me in pain...
She would have been grieved to see me suffer
And, in her own inimitable way---she would have turned MY cancer into something about HER...and that is just fine...that was Debbie...
I miss my mom every day...every hour...every minute...every second...
I hate that she missed watching my kids grow and graduate high school and college.
She would have been so proud of what an amazing woman my daughter is and how incredible my son is. She would have loved being with them as adults and being thrilled by all they have done.
My mom was beautiful and fun to be around. She loved her friends. She loved church. She loved her family more than anything but God.
My mom had flaws.
We all do.
Sometimes those flaws were hard to handle.
But most of the time I looked beyond them and just saw the woman I loved most in this world. Just like she did with me.
My mom taught me to cook...and how to dress...and how to make a comfortable inviting home...and how to have fun at holidays...and how to love water and exercise...and how to love theatre...
I miss my Daddy too...just as much...but my mom and I were closer and most days I probably called her at least 3 times a day just to talk or run something by her.
When she died I had her phone and I would use it to call my cell so that I could hear the ringtone I gave her (Edna Mode from The Incredibles saying "Kisses Darling I am sending you kisses"). I did that so much my ex husband finally tookt he phone away from me.
I have things I find impossible to part with because they were her things. She would make me throw or give them away if she was here...
I was so overcome with grief when she died that I laid in my bed and did nothing but take my kids to school and pick them up.
I was costuming my first show and I had things to do and desperately needed to get back because I owed it to GOTT and the kids but I couldn't move.
Finally one day I dragged myself to the shower, threw on sweats and went to school. I had hoped to avoid the kids but ended up going into the Fine Arts Center and the entire 8th grade was in there with the champlain. One sweet child saw me and soon I was surrounded by all of them wanting to hug me and show me love.
It was an incredible moment and I realized that working with kids is healing to me.
And it is why I do what I do...those kids are healing...and along with my own children they are why I do what I do...
I could go on and on but usually on this day I just reprint the eulogy I wrote about her. And if you want to know a bit about how she introduced me to Musical Theatre you can read my blog "What I did for love". I can't read it because it makes me cry and cry...
A few years ago I wrote a blog about today and I re-read it before writing this one...it was about 5 or 6 years ago and I spent that day riding at my beloved Revolution. That was a magical day because Marvelous Mel let me cry it out on the bike. And it cemented my friendship with Sweet Sonia and Sweet Sandra. And Beautiful Britta brought me a cupcake that day that said "celebrate" and it really made me re-think how I spend this day.
I don't want to sit and cry all day anymore. I don't want to mourn her...I want to CELEBRATE her and be happy.
So I do.
And today I will.
And so now---if you want to join me in celebrating her---here is her eulogy which tells you all the ways you can honor my mom.
I can't exercise because I'm about to get my knee replaced but I am drinking water, eating something with butter, and spending my afternoon and evening at school with my beloved students.
Debbie Shelton was one of a kind...
I think she would be proud of me and of how I fought cancer and very proud of this eulogy...
Today we honor my mother, celebrate her life, mourn her death, and rejoice that she continues to grow in Christ. I gave some thought about what to say, and if I even could say anything---for those of you who know me know that I am seldom unemotional and easily give in to tears. But I will try my best today to do this for my mother because I know she would want me to. And heaven knows, I do love an audience, especially a captive one…and we have full house today…
When I was trying to decide what to say, what message to give, how to best honor her, so many thoughts and ideas came to me. I could speak about her past and give you a boring history of her life…not that her life was boring, but rather just me droning on and on about what she did. We have been to life celebrations like that and about the time that the speaker gets to the high school years of the deceased, we are often nodding off. I also thought about telling you just about what a great daughter, mother, grandmother, sister, and friend she was---but we all know that about her. You couldn’t speak to her without her mentioning her children, grandchildren, or family. Many of you know us and our children by name even if you have never seen our faces because she talked so much about us.
I thought about sending you all a message of peace, love, and our resurrection through Jesus Christ, but I think Father John had that covered and did it much more eloquently and elegantly than I ever could.
So, after some thought and prayer, and talking with my Aunt Jane, and a hope that I will be doing the right thing, I have decided to ask you all to do some things to honor her. I think it is the right thing to do, and I hope you all will do these things in her honor and memory---and it will please her greatly.
Not to steal any thunder from David Letterman, but I would now like to present to you the 10 things you can do to honor Debbie. I will borrow from his style and count backwards down to one, ending with the 2 things she would think are the most important.
Number 10---Cook with butter! My mother was a fabulous cook…she learned from her father who was also a great cook. She rarely produced a dish that wasn’t incredible tasting. She ate a healthy diet and enjoyed good food, but when she cooked, she cooked with butter. Most of our holiday meals centered on her delicious food and she didn’t skimp on the good stuff. So when you do anything in life, and not just when you cook…don’t skimp on the good stuff…make everything you do full fat, whole hog, and ignore the calories.
Number 9--- travel first class and see this world. It’s not always feasible to fly first class, but why not give up some of those frequent flyer points and get to your destination in a little more comfort? My mother always tried to do that…and she was always more comfortable for doing so. She loved to travel. She loved to go and see my brother Beto and his family in Africa----it’s a magnificent country and she loved to be there. She loved New York City---we traveled twice there with Camiel but she made many trips there and she never tired of the city. She took ordinary vacations to ordinary places but she also loved to travel to exotic and fun places like Hawaii, Bermuda, Egypt, and Europe. Even when she visited my sister Katie and her family in Fort Worth she turned it into a vacation. She loved to go places---whether she was traveling with her children or with friends. We took so many fabulous trips together and I know that I will miss having her as my favorite traveling companion. So get out there and see this world…and send my mother a postcard in a prayer.
Number 8---Sleep on a lot of soft pillows. My mother’s bed was a soft, safe haven for my children and my sibling’s children…all the grandchildren have slept in Nona’s great big bed, surrounded by all of her soft pillows. Sometimes our entire family would pile into her bed. My mother had guest rooms but my sister Susan would always sleep in her bed when she came to visit because Mom’s bed was the best. Everyone who was at her house at some point would find themself lounging about on my mother’s bed. My mother made bed-making into an art form. Her pillows were soft and plentiful and her sheets were luxurious. But translating that to real life, what she did was to create comfort around herself. We can all honor her by splurging on the creature comforts in our home and create that safe, soft haven that welcomes us.
Number 7---take more pictures. My mother took more photos than anyone I knew---she also managed to display them all. If you were at the funeral home yesterday you saw just a smidgen of the photos she had. And if you were there yesterday I sincerely hope you saw the marvelous video that my Aunt Gayle put together with some of Mom’s photos. She loved photos of friends and family and usually had her photos to the developer within hours of taking them. Take photos and share them with everyone. There is no greater artwork in this world than the human face.
Number 6---Keep a clean house. I have failed miserably at this…she was such a tidy house keeper and I am nothing but a mess…never dirty, just messy. Her home was ready for “Better Homes and Gardens” to come and photograph it at any moment. When her father died she took on keeping the house to help my grandmother out when she went back to work. I was told a story about her neat-nick ways that makes me laugh. Back in the early 60’s, when my mother and her siblings were young, my Uncle Phil was home relaxing. Suddenly my Uncle Steve ran through the house yelling “Run for your lives!” and raced out of the house. My Uncle John soon followed suit and jumped out the window. The next thing that Phil saw was my mother making a mad dash through the house and she forced Phil, along with Jane, Gayle and the others, out of the house. When my grandmother came home she found 5 of her 6 children waiting on the front porch, locked out of the house. It seems that my mother had done her cleaning and they weren’t allowed back in---no matter what. Her housekeeping skills continued on to her adult life. She had a maid that had absolutely nothing to do. She threw out her clutter and kept things so organized. Her closet is a work of art. She never had to worry that her house wasn’t tidy enough for anyone to drop on by. Speaking of which, that brings up:
Number 5----Throw more parties! My mother was the hostess with the mostest. Martha Stewart had nothing on her. She gave great parties. She was the social director for whatever community she lived in. When I was young I can remember sitting with my sisters and brother and watching all of my Mom and Dad’s friends come in to the parties they gave. They had fabulous parties…costume parties, hunting parties, dancing parties, teas, casino parties, bridge parties and benefit parties. They entertained heads of state and heads of the school. We loved to watch her get dressed for a party and always were amazed that she could look so beautiful each and every time. Our home was the gathering place for the web of friends that she had in Kingsville. I remember Sunday afternoons spent with our family friends coming by---the kids stayed in the pool until we were long past the prune stage, the dads would stand around and drink beer until it was time to watch Peyton cook the burgers, and the moms would lay in their chairs sunning themselves while wearing curlers in the hair covered by a silly cap or bandana. Why those women lounged in the sun in hair curlers is beyond me, but I can still see that group of people at my house as if it was yesterday. She could even turn a hairdressing adventure into a party. In the early 70’s I remember her friends showing up, armed with home “frost your hair” kits, Lancer’s Rose wine, and cigarettes for those who smoked. The would seat themselves around my mother’s long vanity area and pull each other’s hair through the frosting caps…all the while yakking and drinking wine. As the evening wore on my sister Noel and I became hot commodities because we could pull the hair through the caps for them when they got a little too tipsy to do it right. They would emerge a few hours later, full of wine, full of fun, with head’s full of frosted hair---they all looked a little like Bea Arthur in her “Maude” days…and my mother was their queen. Those were some of the greatest times of my life, and I think my siblings will agree. Most of the best times were never a planned thing…it was just that everyone knew that our family and my mother would welcome everyone and no one had to put much thought to it. Have a party---we are, because she would want us to!
Number 4----Support education. It was so important to my mother that we got an education. I know the day my sister Sarita graduated was one of the proudest days of her life. My graduation from A&M was a triumph for both of us because she never went to college. Her siblings went to various universities and she was proud of their accomplishments. She tried to give us the best education possible. While in Kingsville she sent us to an amazing Episcopal school. When the time came to educate my own children I feel so blessed that I too found an amazing Episcopal school for my children. I use what she did for us as a blueprint for how to raise my own children and I was pleased that I can give such a wonderful educational gift to them. My mother loved going to St. Francis and seeing her grandchildren perform, or attending grandparent day, or even just picking them up in the carpool line. She so believed in the school that she participated in the school’s capital campaign and regularly gave to the Annual Giving program. But her dedication to good education didn’t stop with her grandchildren’s school----she gave scholarships to A&M, helped build on to our school when we were children, and she helped out with various projects at Texas A&I when she lived in Kingsville. So give to the school of your choice and support it well, she would really like that.
Number 3--- Drink more water and exercise more. Was there ever a time that we didn’t see her drinking water? She never ordered anything in a restaurant but water. She was a connoisseur of water and she drank it by the gallon. She always had a bottle of water and kept several pitchers of it in her fridge. It’s good for you and won’t interrupt your sleep…so toast her with your next glass and drink it more often. And get out there and work out! My mother loved to exercise…she was in amazing shape and she worked hard at it. She loved to walk with her friends in the morning and she also loved going to the Houstonian to work out. She enjoyed trying all kinds of classes but usually stuck to her walks with friends when the weather was nice. I know that she managed to get many of you out of the house to walk with her and I only wish she had made me do so more often with her---then I might fit into more of her gorgeous clothes! Take care of your health---she would want you to.
Number 2---Go to church. My mother loved coming to St. Michael’s. She loved this church and she loved the Catholic Church. She often walked to mass from her house so that she could exercise both her body and her spirit. She loved her faith and she clung to it. She loved Jesus, the Virgin Mary, and God. She prayed for all of us…so let us all remember her in our prayers and thank God for her life because He did such good work when he created her.
Number 1---love your family, spoil your children, but ridiculously spoil your grandchildren. My mother was the most beautiful and wonderful mother a person could have. She did the best she could after the divorce and I think we all turned out pretty well. But where she really shined was in the “grandmother department’. Nona, as the grandkids call her, was the best grandmother a child could have. She spoiled them rotten and loved them with the fiercest of loves. She taught them so many things and she could spend hours listing their virtues to anyone who would listen. She was devoted to her mother and she loved her brothers and sisters so very much. She was the oldest child and was their second mother since some of them are much younger than she was. Her family, children, siblings, and mother and grandchildren were the light in her life…and she was such a strong light in ours. We will all be a little dimmer without her to shine on.
In closing I want to finish with a story of how all of this got put into perspective for me. Over the last few days I have been told so many things and been given much sympathy and advice. But the true meaning of how I, and those of us who loved her, are to carry on were best expressed by Connally Dull. Connally is the sweet 3 year old daughter of my good friends Christy and John Dull. I left the Dulls, Connally, and her 2 sisters at my house to go and sign the papers to release my mother’s body to the funeral home. The Dulls said they would stay to answer the phone and the door while George and I were gone. When I stepped back into the house I began to cry once again. Connally looked up at me with her beautiful big eyes and opened her sweet mouth and said “Why you crying? Your mommy in HEAVEN!” I couldn’t have said it better myself…Sometimes it takes a child to put things in perspective.
Inspiration Song: "Because You Loved Me" by Celine Dion...because she loved me I learned so much...
Bye Darlings...if your mother is still living do me a favor and call her and tell her you love her...I would do anything to be able to do that...
Mommy I love you...
Tuesday, March 2, 2021
I really wish I was updating you on my fight with El Diablo and all that had transpired (surgery! frozen shoulder! another infection!) but that can wait...two weeks ago we had a weather situation (putting it mildly) here in Texas and I have FEELINGS about all of this...and I know my fellow Texans do too...
So the week leading up to the ice/snow/apocolyptic storm we were warned we were getting a major weather event and we needed to prepare...
And we all thought "ok, we handle hurricanes---so we can handle this!"
And many of us were hoping for snow and all the cute Insta ready moments it would provide:
- cute pics of our houses in the snow
- kids in snow
- snowmen we build
- looking cute in our cold weather gear
And we could post all those photos and admire each others snow pics...
There was nothing cute about the Snowpocolypse.
Or should I call it Snowvid?
Or maybe "all of winter in one week"?
We were told to expect "rolling blackouts" throughout the night on Sunday night/early Monday morning.
yeah we got that...we can handle an hour off of power...no biggie...
We were told to shut off water lines (I am physically unable to do that so I had to hope for the best)
We were told to wrap pipes (I did that with some help from my daughter's partner---they were a big help as I am not the "handiest" of girls nor do I get around well enough with my bad knee making me unstable so things like kneeling down are impossible).
We were told to fill up bathtubs for flushing toilets (I forgot)
We were told to stock up on groceries as roads would be impassable---so many of us filled our fridges with food and set about to making warm comfort food that would get us through the cold snap.
I had planned meals and had what I needed on hand to keep myself fed.
On Saturday I was blessed to be able to receive the COVID vaccine but the day was an ordeal and my plan to come home and wash my hair went by the wayside...
Sunday came and I figured "I'll just wash my hair tomorrow when I am bored at home"...
yeah...so by Sunday it was a shameful amount of days since I washed my hair...I do not know how people used to go so long without washing their hair but I am getting an idea. I only wash my hair once or twice a week becaue it is so delicate since my first chemo and my hair adjusted.
My hair is NOT adjusted to how long it was since it was washed. Suffice it to say that by the time I got to wash it (and myself) it had been a very very long time...
thank you snowpocolypse!
So Sunday night I made myself a Valentine's supper (because I love ME!) of a steak and some asparagus and a salad and took a hot shower (sans washing hair because it was cold) and went to bed. (and I won't even go into how depressing it is to once again be alone on Valentines Day YET AGAIN for the 10th year but honestly longer than that because my marriage was a big dud for years before)
I had dripped my faucets, opened the cabinets, set the air down to 67 to not stress the grid, turned off all my lights and went to bed and prayed for the best.
My anxiety was running high knowing what was to come so I gathered the cats in bed with me and settled down to watch some mindless tv.
(BTW if you are a child of the 70's there are now some channels that show old 70's shows like Charlie's Angels, Little House on the Prairie, and Hart to Hart...very easy to relax to)
I finally felt sleepy about 1:30 so I turned on my Calm app and was listening to a calming bedtime story like I usually do after some deep breathing and was prepared to sleep through the night no matter what was ahead.
And I do mean a big huge loud scary thunder crash that I am sure many of you heard.
I learned later it was called ThunderSnow or is it Snow Thunder?
In any case it scared the daylights out of me and little Angel (my sweet little old kitty) and she sat upright and shook with fear.
Then the hail started...
it was beating down on the roof and the house and making quit a racket...
Needless to say my peaceful going to bed was no longer an option.
The power had flashed off and I thought :and so it begins...
I looked outside at the falling hail (it was bigger than a good sized pea) and thought that maybe the rolling blackouts had started. Or worse...a damaged power line.
I jumped on Facebook to see that the whole neighborhood had gone dark so it wasn't just me...
I also learned others had lost power then around the city as well. One friend lost hers 15 minutes before me so I was feeling relieved thinking it was probably a controlled outtage.
Wide awake at that point I watched Facebook for comments to see what was happening to others and when my friend who was 15 minutes ahead of me got power back after an hour and 15 minutes so I expected that mine would return 15 minutes later or so.
3:00 am came and went
3:30 am came and went
Finally at 4:00 am I passed out exhausted and more than a little scared.
When I woke up there was all that cute white snow I had wished for and the power had been out for 6 hours and my house was a toasty 45 degrees.
No I didn't take pics for Instagram...
And I didn't have cell service...or rather I did but it was very very spotty...sending a text could take minutes or not at all.
I bundled up and wrapped the cats in blankets and shivered.
I thought about all my friends and loved ones who were doing the same.
And I was super grateful for the warm fuzzy robe I was wearing that is a constant reminder of yet another battle I once had with the ex who thought it was a frivilous use of money when we were once on vacay. I am grateful I didn't listen to him when I bought it.
I tried to figure out how to turn on the fireplace as I had never used it.
no...not once in 8 years...you would think...but no...
And I had shelves built since I moved in and looked in vain for a pic of the space before so I could see where the little "hole you put the key in" would go but in my panic and distress I failed to see the "before" pics.
I pushed a few things around in the cabinet but the room was somewhat dark from no power and the inside of the cabinet is a dark almost black color of grey.
So I, as one of my former student's would say---"Guy looked".
(Guy looking: looking for an object and then when not found after a 10 second scan you yell for wife/partner/girlfriend/mom/dad/husband/brother/sister/the dog/anyone more responsible than you to come help you find what you are looking for. Which 9 times out of 10 is right where it should be. Former student who taught me this term would lose costume pieces and me or my girls would find it in 10 seconds...he would "guy look" and we would "mom look"...btw Guy Looking is not just exclusive to males...)
I texted the former owner (sweetest guy ever) who said it should have a key but at that point my panic was climbing higher as I got colder.
And then realized that even if I located the place to turn it on I probably shouldn't use it anyway since it had been so long...even though it was just gas logs...
but I knew having a fire might make the difference between being able to withstand my house and not and had I taken a klonopin and settled I might have found it.
Because it is right there in the cabinet.
As it should be...
But I digress...
I thought about going out to my car and warming the cats and I up in there but I had parked my car in such a way that I could not get to the handle to pull to unlock it so I could manually lift it.
So I sat down to cry and prayed my tears would not freeze like they did when I last snow skied...
And then I went to lay down and eyed my klonopin again and should have popped one for my anxiety but I decided to power through by reading Bridgerton and thinking about how handsome Rege-Jean Page was in the Netflix series as I read the exploits of The Duke and Daphne.
I fell asleep (because I had very little the night before) and dozed about 20 minutes and woke up to the phone ringing...
It was KuteKelly
And she was having none of it with me stranded in a cold house and she had power.
She wouldn't take no for an answer and she informed me she would be there in 20 minutes and to be ready. And yes the cats could come.
So she got to Casa Frio (usually Casa Bonita but #freezing) and loaded up me, my bag, my pillow, my walker, my cats, a litter box and my lymphedema pump and off we went to her beautiful WARM home.
We settled me---got some side eye from the kitties---and headed down to her den to catch the news and see what was going on.
She made us a lovely early supper of salad and turkey burgers and we were grateful for food in bellies and warmth and lights and the wine or cocktails we were planning to make.
And then we were plunged into darkness.
Yup...less than 2 hours after I arrived the power went out.
We thought "rolling blackout" and knew my power was still out but chalked it up to something wrong with the service line (like ice).
We moved into her living room and sat by the fire and she dispensed with cocktail making (she makes an incredible vodka/peachy/cranberry thing that is pretty much witchcraft), gathered the dogs, lit candles (and by "we" I mean her and I sat like a lump on the couch petting a dog) and watched "Black Panther" (and cried...AGAIN) and laughed and passed the time.
It became apparent that the power wasn't returning so she took me upstairs and grabbed another blanket and a flashlight and got me settled.
I was so exhausted by the day's events that even as cold as it was (maybe in the 40's?) I went to sleep.
And slept hard...and thankfully did not need to get up as it was freezing.
The cats, who usually hate to be under covers, burrowed themselves into the bed as close to me as they could). They were cold and confused...but mama was near.
I woke up Tuesday to Kelly making us coffee in her french press (she has a gas stove) and her hubby offering to make us some eggs...yes please!
We heard from my neighbor that our street got power back at midnight so we (I mean they...because stairs are hard for me) loaded up the kitties, the litterbox, my suitcase, my pillow, my blanket and my lymphedema pump and walker and we headed back to my house.
The power was OFF
It had lasted 12 hours (yay my food was saved!)
The house had heated up to a perfectly toasty 61.
I told them to leave me and I would be fine...
and I was...
cold but fine (they didn't get power back either)
so I lit every candle I own and found my battery operated ones and sat bundled in my chair drinking hot broth because I didn't want to open the fridge.
Fun fact: my house smelled like the Yankee Candle section of a Cracker Barrel (btw I love me some Cracker Barrel). It is possible to have TOO many scented candles going (thank you $9.99 annual 3 wick candle sale at Bath and Body Works).
Once I had the candle situation under control I set about to make sure I had water for flushing toilets because it was a tiny trickle.
My neighbor across the street gave me a large bucket of pool water and brought it to my door...and I went outside with my big stock pot and scraped snow into it and melted the snow (I have a gas stove) so I could flush the toilet.
I passed the time playing games on my phone and being grateful I had charged my brick charger so I could recharge because I was on my way to becoming a Spider Solitaire master and Flood It was not proving to be a big challenge...and yes it is possible to play too much solitaire...and Dragon was unimpressed with my wins...
The temp in the house plunged down to 51 (not bad compared to other friends) and Angel (the little old kitty) wandered off inside the house and found a warm (relatively speaking) hiding spot and refused to budge.
Dragon and I spent another night huddled under the covers.
KuteKelly called the next morning to inform me that her power had just come back on and invited me to come and be warm. I told her I would just stay for the day as I had not located Angel and didn't want to do a repeat of me and half my house having to go to hers...
I knew I had to get my food out of the fridge so I grabbed it and put it outside since it was colder than a fridge out there. Luckily my butter was still very hard so I caught it in time.
I spent the day being warm next to her fire and her hubby heating up the delicious veggie soup she had made and being so grateful I had a friend who was so kind. They had water issues with the house so we did the "flush the commode with pool water" trick.
I learned that trick in 1989 when we had a freeze here in Houston and all the pipes were frozen.
That time I had insisted on getting a bath. We had power but water was a tiny trickle. So I heated up pool water on the stove to a boil and carried it up and down the stairs (funny how I can't do that now and it saddens me that I can barely carry a cell phone upstairs since I must hold onto railings). I made myself a hot bath and the ex invited himself to it so before he could get in I poured an unseemly amount of Coco Chanel bath foam into the bath to keep him from invading the bath he had poked fun of and I had worked hard to get.
(Still in the freeze of 1989) I bathed and we went to my mom's house where she had a guest who showed me how to take the powder room trash can and fill it with pool water and dump it into the toilet bowl.
Well color me impressed...I didn't realize that is how a toilet worked.
BTW the man who taught me that trick was none other than Dr Red Duke (his wife at the time was a friend of my moms) and it was reason #453 that he charmed me (along with that Aggie ring he proudly wore that was worn out from all his scrubbing)...Trauma surgeons know all the tricks...
But I digress...
KuteKelly and The Hubby even made it to the store to get flats of water for them and for me (so grateful for that) and we settled in to watch The Blind Side and have a little snack of cheese and nuts and some wine.
Right as we were drying our tears from Blind Side...THE POWER WENT OUT.
They dropped me at home (by my insistance) and headed to a friend who lived further out of town that had power and water pressure for showers and laundry (and the power went out 5 minutes after the arrived so there's that).
As we drove through my neighborhood the only lights were the gas lamps...it looked eery...
But less than 2 minutes after we arrived THE POWER CAME BACK ON.
They left to head to a shower and I waited for the power to go out again...
It stayed on an hour...
It stayed on another hour...
I finally felt safe enough to put the food in the fridge and to cook a bit of dinner.
The power made it until 10 and I felt like maybe I was out of the woods.
I boiled water to soak the dishes and headed to my bedroom.
Another "wipes" bath and I finally got to use my lymphedema pump for the first night in 3 days.
I was finally starting to relax and was most of the way through using the pump and...
Darn...I was in the middle of my Real Housewives of Salt Lake City reunion...
I turned on the battery operated candles, got out of the pump, wrapped my legs in my bandages (yes, this is EVERY SINGLE NIGHT OF MY LIFE) and got ready to knuckle down for another cold night---grateful that my fridge was once again down to the proper temp.
I played Solitiare again hoping to get sleepy and checked the neighborhood Facebook page and saw a few people got their power back and...
IT CAME BACK ON
Oh thank you God, the Son and the Holy Spirit for loving me...and my neighbors and friends...
because we all know ERCOT does not!
I had a fitful sleep because I had PTSD that the power was going to go off again so I left my celing fan on to know if it went off. We were told to use as little power as possible so I had been conserving all evening since it came back on.
I woke up the next morning to the house being a fine and toasty 66 and this time Angel decided she better sleep warmly next to mom.
The power has remained on since
And I am tired of resetting the clocks on my appliances...
I made it through the storm with much less loss and problems than others.
My house never got below 45
I was always able to eat
I had 3 very cold nights but plenty of blankets
I had a friend who shared her home with me
I always had water even if it was a trickle
I did not have any pipe issues
I had friends who were out of power from Sunday night until Thursday and the didn't even get small chunks of time with power being back on...I at least had 12 hours in the middle of it
Friends who have whole rooms in their houses having to be torn out (and one who had to move)
Friends who did not have water and some still don't
landscaping lost pretty much all over the city
and we all now shudder at the thought of snow
I learned a lot those few days and not just that I prefer to be hot over being cold.
I learned that friends who will not take no for an answer are the best kinds of friends to have
I learned that once again this city is so much more resilient than the rest of the country thinks we are...this also goes for the state of Texasa
I learned that going with the flow when given no choice is the only choice
I learned that I need to have my fireplace inspected and make sure it is working before next winter
I learned that I have more candles than any woman needs but I am grateful for them
I learned that a cocktail when you are cold is a warming thing
I learned that a friend that says "you can bring the cats" is a friend indeed
I learned that I can do hard things alone but it is better when you have a someone...especially if that someone is a friend
I learned that I am a damn good solitaire player
I learned that I should have taken some anxiety meds
I learned that my anxiety is really fueled by stress
I learned that as much as a worried for myself that I can't stop being a mom and worried more about my kids and family
I learned that I am really happy I have a cell phone charging brick
I learned I can't read when I am stressed
I learned that a hot shower is truly a blessing
I learned that putting off hair washing day is not a good idea
I learned that the sound of a toilet tank filling is a soothing sound
I learned that I really really appreciate my dishwasher
I learned that putting food outside when the power is out is a good idea (thank you Marvelous Martha for that suggestion)
I learned that I can be my own company when I have a tv but notsomuch when there is no power or internet
I learned that I need to park my car in a better placement in the garage before the next storm in case of power outage so I can open my garage door
I learned that I have amazing friends who all love and check in on each other
I learned that being challenged with mobility makes things like this much harder
I learned I want my knee fixed more than ever
I learned that I need to get some hose bib covers for next winter
I learned that my old lymphedema bandages can be a pipe cover and plan to do that next time
I learned that we need to demand better from the powers that are supposed to take care of us as a community (I am looking hard at you here ERCOT)
I learned I could do things I did not think I could do...but then again I have been doing that for 10 (and most especially the last 4) years now
I know I am most certainly not the only person who went through hell...all of us did. I know that many many many more people had it so much worse than I did.
But I am proud of how we all came through it
And doing hard things is just something I have had to get used to
And next time it snows...I'm going somewhere else!
Inspiration Song: "Cold as Ice" by Foreigner...because I hate being cold as ice...and I don't think I will ever be excited for snow again..seriously
Bye Darlings...I hope you came through the storm ok...so many of you had it much much worse than me...and I just wanted to share a glimmer of what some of us went through for those who don't understand how Texas got crippled...I know places that get snow all the time don't understand why we were in such distress but we know we were unprepared for what we were put through...
Sunday, October 11, 2020
This blog will finally explain why I had to be in the hospital and what is this crazy thing with my wound that won't heal...and why I need another surgery...and all the other medical mess I have been wading through since July...it's a long one so it might be good bedtime reading...
it's been a while...
We are still in the middle of a global pandemic, an election year and fighting for racial justice and equality...I'm not well versed enough on these things to discuss them here and that is not what you come here for...
no you come here to find out what El Diablo has been up to and what life with cancer is about...just about as much "no fun" as politics!
So I finally got to have a little summer vacation...
IN THE HOSPITAL...
6 days worth of vacation.
I don't recommend it...
the food is terrible and being attached to an iv pole is certainly no fun...
there are no fun activities and sunsets are blocked by all the medical buildings...
there is no bar and no pina coladas...
no pool to lounge by or have cute cabana boys bring you umbrella drinks...(but the nurses are adorable)
no beautiful room with a view and a fabulous bathroom with a tv to watch while in the tub...
you can't even wander outside your room because of COVID...
but the nurses were truly amazing and wonderful.
But honestly I would have far preferred a trip to the lake or the beach or Kauai...
I woke up one morning feeling just awful...had my coffee and ended up napping. Felt worse after my nap and suspected I had a fever...the cat suspected too because she was all over me.
I went to my bedroom to take my temp and given that I managed to buy a thermometer that only reads celsius it made it a little tricky.
(I'm sure there is a way to make the thermometer read Farenheight but it has escaped me and it came with no instructions)
So after a little conversion via my phone I found out I had a fever of 101...woo hoo that was gonna earn me a trip to the ER (because when you are a cancer patient you can't get fevers like that). Do not pass "Go". Do not collect $200. Go straight to that space on the board marked "hospital".
I called my doctor and she said to come in...when I told her my temp was climbing and I had some shortness of breath she said "go to the ER...the doctor will have alerted them by the time you get there".
Called my daughter, took a shower and washed my hair (because God knows when that was gonna happen again once I had my port accessed and meds going in), packed a bag (I knew there was no way I wasn't going to be admitted because this is about my 5th rodeo with this and not my first), threw on my favorite dress of the moment (a bright turquoise Mexican dress given to me by sweet Nurse Jamy), and off we headed to the hospital.
She had to just drop me off...
no going in with me...
so I got "screened" (by then fever had risen to 102.5) and was sent to the desk so I could tell the man there that I needed to be seen and needed a COVID test.
Out comes a nurse who pretty much assumes by my garb that I am just some desperate housewife looking for a rapid COVID test.
I explain that my doctor had called ahead and wanted me to be seen but it fell on deaf ears. I was delirious with a climbing fever so I'm not sure I explained it right but in any case I was told where I could go get a test...
I went back outside and sat on a bench and texted my doc where I was and what was up...
She sends back a message that they are sending a resident for me.
So I sit patiently on the bench and out comes the triage nurse and a man who appears to be a resident about 10 minutes later. They go around asking everyone BUT ME if they are me...I wave...not noticed...
I'm a pretty big turquoise blob so I am still not sure how they missed me...but there I was...with a big pink suitcase, a walker, a big pink purse and a big turquoise me...
Doc calls and says they are looking for me and I tell her I am outside on the bench and I am pretty sure they just looked over me...I go back in and the screener says "Baby they are looking for you" and back to the guy at the desk who is suddenly flustered (seems my doc went a little nuts with the department for leaving a woman with a 102.5 fever and cancer to sit in the valet area).
Stickers are printed...like he literally had the stickers (with my name and codes) right there...
now in medical world when you have a STICKER you are being seen...no maybes...you are getting attention.
Nurse finds me and apologizes profusely and so does resident...by then my fever is 103.5
needless to say I am taken right back
The ER at the hospital is a new space...and it was FULL of people...some even in beds in the hallway.
As I am a suspected COVID case I'm put in a room with another person separated by a screen.
I am masked the whole time.
So now they have to figure out why I am sick...maybe COVID or maybe the wound on my stomach.
I'll back track a bit because this might be the weirdest way I have ever gotten a wound.
Back in July a few days after my last Keytruda infusion I went over to GOTT and GOTTESS's house to pick up mail and use their pool while they were out of town. I was sitting outside reading a book when I felt an intense burning on my stomach. It felt like a laser beaming down to this one particular area on my belly where 8 months previously I had injected myself with blood thinners. The area was fully covered by a black bathing suit. When the burning became too intense I jumped into the water. A few hours later when I got home I could see it had blistered and popped. It was red but not awful but 5 days later it had turned into a wound despite my cleaning and care and application of triple antibiotic. It looks like a second degree burn. The cancer chemo pills I am on impedes healing so that was not helping at all. Prior to my visit to the ER my oncologist saw the wound and stopped all chemo meds and did a biopsy and had me treating it with topical antibiotics. So we knew I had a wound...we just didn't know what it was doing to me...
So back to me in the ER...
I'm laying there and they are poking me with multiple iv's and heart monitors and ultrasounds and x rays and no one can figure out what is wrong with me---except thankfully my COVID test was negative.
I do not do well with needle sticks. My veins are delicate and blow very easily. I have an iv in my ONE GOOD VEIN in my arm and one that is super painful in my hand (which I cry when she sticks me but she had no choice...I had to have 2 iv's and they can't access a port in the ER).
My temp stays at 103.5 and I'm on fluids but able to get up and walk to the restroom myself.
ER doc is not sure what to make of the wound and how I got it so he takes a culture (earlier that week I had a biopsy on it as well). He's doing his best to get me stable so I can go upstairs.
Everyone who asks how I got the wound is flabbergasted.
Yes I just used the word 'flabbergasted"...it's the only way to describe it...
At some point while I'm fever delirious (and with the chills) they bring in a very sick man and put him on the other side of me.
What transpired was over an hour of about 8 people working on the man. What amazed me was how extremely calm they all were. One guy seemed in danger of getting a little antsy about it and I noticed the doc that was running things let him go "find something" as a way to get him to chill out.
I have no clue what was wrong (nor was it my business) but I did know they were saving his life and that he was very ill. But the calm that presided over his care was impressive---nothing like Dr Green getting really excited and yelling at Susan in an episode of "ER".
At some point I had been there about 5 hours and I hadn't eaten for 24 so my nurse made sure I got a meal delivered to me on a tray. No clue what I ate. I just felt bad eating with the guy in the bed next to me possibly dying. But my nurse said I needed to get something in me.
They were running an antibiotic in me that turns me red so I looked like I had spent a week in Cabo without any sunscreen and was burning up and chilled at the same time. My hair which was never fully dried was piled on my head with a scrunchie and it was a rat's nest from not being brushed but rather hastily thrown up on top of my head so that it could be out of the way for medicall stuff. Yeah no photos of me looking dreamily (and filtered) laying in bed being attended to...
A new nurse took over and she was also awesome...she kept checking in with me and telling me she would get me upstairs as soon as the patient next to me was stable and that the room and nurse upstairs were ready for me.
I also had a tray sitting on my lap for an hour and half and she was horrified to realize she left me like that...I was so out of it I didn't really notice.
We get me upstairs and I am put into what amounts to the tiniest room in the hospital...last time I had the Princess suite so I'm gonna call this the Pauper's room. I actually preferred the smaller room since I couldn't have visitors and it meant it was small enough I could pretty much get all around the room without unplugging my iv pump...
it's the little things people...and in this case I mean little...
My awesome nurse gets me set for bed and drugs me up and tries to control my fever.
I'm fevering so bad I have the febrile shakes and am literally shaking all over---that's when I know it's a bad fever.
I get feverish sleep that night and as usual just about the time I am sleeping it's time for meds, vitals, or labs or I need to pee from all the fluids they are pushing in me...and I am drinking as much water as I can to flush all of this out of me...
I'm still itching and red from the vancomycin so that makes it all extra fun.
The next morning I can finally get my port accessed and my arms are free of the iv's that are hurting and I have more freedom but still fever...it goes down to 100 but then pops up again.
Docs still can't figure out what the heck is going on and I'm being pumped full of antibiotics and Tylenol.
Shall we discuss hospital food?
On second thought....no....
I just order whatever I think I can choke down which is not much while I am very sick.
Being that sick you don't much care for what you are given to eat...but I do remember enjoying some ice cream and I don't recommend ordering fish in a hospital...and I think grilled cheese was a safe choice one day...
You have to order by 7 pm or you won't get dinner...so most nights they call if you forget to call in your order. I wish they let me order for the day but this isn't regular room service and I am glad to have them remind me to order (most days).
All my food is delivered in paper boxes and with plastic ware. It's not terribly warm but again I'm not there to eat...I am grateful when they decided I was no longer an incubus of the viral plague and started bringing my meals on a real plate under a plate cover and with real forks and knives.
I spend the next 3 days shaking, peeing (from all the fluids), and watching tv that I have no clue what I am really watching...
I do recall Golden Girls and Frasier in the wee hours of the morning when I could not sleep.
I'm extremely grateful they took QVC off the chanel lineup so that I don't end up ordering things while drugged up...again...
Once when I was on morphine in the hospital I managed to order a few things with the handy app on my phone as I watched QVC. Days later when I am finally home boxes appeared. In my drugged up state I had ordered a primer, an eye shadow pallette and a dress.
Thank goodness I liked all of them...
But this time I was not on morphine but delirious so it was good that there was no QVC...heaven only knows what might have appeared on my doorstep...
Doctors on my team rotate in and out...they are doing the best they can.
Dr. Rockstar comes to see me and she is full of her usual sparkle and love. Dr. Sweetmeds also comes by and I cry because she is always so incredibly thoughtful and kind.
They tell me that apparently the infection I have is a GOOD sign about how the chemo drugs are working in me and so despite the fact that I am stuck in the hospital it is not a terrible thing.
So weird to have an infection of unknown origin be a good thing but at this point I will take whatever good news I can get.
And I am relieved it's not shingles because at one point they thought I had it...
But then they tell me that I am overloaded with antibiotics (I think my red skin and itching all over might have given them a clue) and that now I am apparently a walking yeast infection since the antibiotics have killed all the good flora in me.
Oh and I have staph in the wound---but it's the good kind?
I stop asking questions and just focus on getting fever free so I can get sprung.
And I call myself a walking bagel when I text Aunt Jane the latest...I'm just one huge round thing of yeast...super fun...or maybe I should have called myself a mushroom since I'm a fungus? In either case it's not good...
I'm super blessed to have amazing nurses each day and I even get to see my beloved Adam and Mimi...I honestly would check into the hospital just to be under their care.
I have to wear a mask whenever someone is in the room but otherwise I don't have to which is a relief.
On Saturday night I am reunited with one of my favorite nurses: Lorena.
She was fairly new to nursing when I was in the hospital in November but by now she has been deep in the trenches. She used to be a school counselor but felt her true calling was nursing. She was right to follow her true calling.
Last time I gave her one of my bracelets...she keeps it in her car and tells me she thinks about me daily...I believe her.
On Saturday afternoon I get a fun new symptom: peeling and incredibly dry skin. I couldn't get enough moisture on my lips---they were peeling like they have been sunburned. And my face was peeling too and so was my hairline...I kept putting on moisturizer and drinking but the peeling kept happening...
My fever finally breaks on Saturday and I feel like a new person...albeit a new person who's skin is peeling off like a snake and still has to lumber around with an iv pole in my tiny little room.
I'm not allowed to wander the halls or even go to the nurses station...the COVID precautions are very strong...that keeps the nurses safe from me wandering about and doing my usual nonsense on the floor...
Precious Chizoh is my nurse tech that night and once again, as she did in November, she offers to bathe me and changes my sheets and helps me to feel human again. The woman is a saint. So is Elysee. I cry with their kindness and love...
Sunday morning fresh hell is delivered in the form of 60 mg of prednisone. I thought it was 10 mg but find out later I was mistaken.
Let me describe my relationship with prednisone:
yes hate...I literally detest it and I know it's going to be a while before I can get off.
The jitters start, my face turns redder and I can feel my body swelling by the moment.
I'm literally turning into a live balloon animal...I feel like the snake in the movie "Shrek" that he blows up and makes into a balloon...
If prednisone was a tv character he would be Joffrey Baratheon (and for you non Game of Thrones people lets just say BARNEY...annoying and makes you want to throw things...)
If prednisone was a food it would be unseasoned white rice because it makes you want to binge on carbs but nothing tastes all that good...
If prednisone was a color it would be red because it turns you into a heat machine....
I think you get how much I hate prednisone....it's like having to eat liver every day...and the pills are super bitter...
So I get the whopper dose of prednisone on Sunday and things start to go all kinds of sideways but thankfully no fever.
The high point of that night: another sponge bath...the low point: no sleep and I forget to order my dinner.
Let's start with dinner fiasco...Elysee comes into my room to take vitals at 6:58 and I realize I had forgotten to order my dinner.
It was the one night they didn't call to ask if I was going to order. I had this exact problem back in November. I have a plan for the next time: a timer on my phone.
I call and get put on automatic hold and then the phone abrubtly ends the call. I call back and it is 7:01 and no one answers.
So much for dinner.
I call the nurse and despite the fact they are understaffed and having patient issues Lorena swears she will get me dinner even if it is just a sandwich from the cafeteria. Honestly I don't care and I offer to take myself down there but she isn't having it.
They are so overwhelmed with patients no one can go down until almost 9 and when Chizoh gets there the cafeteria is closed for the COVID cleaning they do several times a day. It's not until 11 that I finally got food. Trust me I wasn't starving and honestly I should have just cancelled but Lorena again wasn't having it and knew I needed food with all the drugs.
I eat and then become so engrossed in a Ryan Reynolds movie that I lose track of time...Lorena comes in and says I need to get some sleep and gives me a sleeping pill. I am determined to find out who Ryan falls in love with so that doesn't help the sleeping matters. But I take the pill and pray it works...
at least I found out who Ryan ended up with...
Finally around 3:40 am I start to drift off...thank you prednisone...
At 4 I am woken to take vitals and can't get back to sleep until 4:45 and at 5:00 poor Lorena has to come in and take labs...she feels awful for me...
So I got two 20 minute naps that night. Thank God for Frasier...I also check out to see if my friend who does the early news is on and what she has on (she's always super gorgeous even at 4:30 am)
On Monday the doc declares I must be fever free 48 hours to be released (so 6 pm on Monday) and that the prednisone is going to continue for some time.
I have a meltdown.
Like crying my eyes out...hiccuping...having a HUGE pity party...
I am on no sleep, my skin is peeling, I have a fungal infection all in my body so that I am a walking mushroom, my hair is a rat's nest so I look like a very blonde version of Bellatrix LaStrange, and I can't go home until evening...
My nurse for the day, a precious girl named Jeanna (who I immediately bonded with over my nail polish color...she's my kind of girl) comes in to find me weeping uncontrollably (thank you Jeffrey Baratheon prednisone) and calls the doc and insists that I get some Adavan so I can calm down and maybe nap.
Doc orders Adavan and Jeanna brings it and hangs another bag of God knows what...I order fish for lunch (bad idea) and finally get about an hours nap in the afternoon.
I feel like hell.
I'm finally done with iv's so dearest Adam comes in and takes out my port line and can tell that the prednisone is doing a number on me.
Doc orders a higher dose sleeping pill so that I can maybe sleep that night...one can hope...
Finally at about 6:30 I am released into the wild again and I get to go home.
Aunt Jane is there to pick me up and to come stay at the house with me to make sure I don't have any issues. The woman is a saint and I am beyond blessed to have her as my aunt, best friend, caretaker and "person".
As much as I want to get home to my own bed and my kitties it is a bit scary to leave the hospital...as much as I hate it in there I always feel very safe and cared for.
I get home and take my temp every hour...thankfully no more fever but I do feel like I have been put through hell.
I get a real shower and Aunt Jane makes sure I am good and settled and we dig in to watching Hamilton (me for the 5th time...still loving it) and I finally relax but continue to reach for my imaginary iv pole every time I stand up and walk about...when you are attached to one for 6 days you tend to feel like it is an extension of your arm.
Being home I finally rest better but sleep is still elusive until about 2 am because of the steroids...but at least I am in my own bed and I don't have anyone coming to take my temperature and blood pressure every 4 hours.
My cat, who has been very sick herself with kidney failure (which by a miracle and the support of friends we were able to stop further damage from but she still needs daily hydration via a needle under her skin), hangs with me as close as she can so she can watch over me. Dragon, my other cat, insists on sleeping on my legs to anchor me down and keep me from leaving again.
Pets know when you are ill...
they also know the difference between when I have returned from a fun few days at the lake with KuteKaren and when I have been in the hospital.
So I have been home for a while and the aftermath of the hospital stay was not much fun either...the prednisone continued to bother my sleep and is caused me to have the dreaded "moon face" (where your face gets even rounder and puffed up) and I have swelling so much in my left leg that the cat literally leaves footprints in my skin unless I take a diuretic (which makes me spend all day in the bathroom).
The drugs also did some unspeakable things to my gut that as open and honest as I am I will draw the line at discussing that here but suffice it to say "mortified" is the best way I can describe what happened to me.
I couldn't work out because of the wound and the continuing gut issues and I really really missed being on the bike.
COVID continues to keep me locked in the house except for the occasional jaunt to the Cancer Center or to pick up things curbside. I haven't been inside a restaurant since early March when KuteKaren and I had a visit to our favorite sushi bar (and yes I really miss sushi but bringing it home "to go" is not appealing).
So there's the story of what happened to me since I told you all it was too long for a regular social media post...I literally sat in the sun reading a book and ended up in the hospital.
Let's just all agree no more sun for me...
Most of the peeling finally stopped (after 3 weeks...yes 3 weeks) and weirdly it has taken years of sun damage off of my skin so although I eye my lounge chairs outside where I used to love to lay like a lizard in the sun I will not be venturing out again to do that. I'll just have dark roots and no tan...but my skin is looking great especially on my arms.
it's a spa treatment that I really do not recommend
As for the wound: I STILL HAVE IT...
as I write this it is October 11 and the wound is like a second degree burn on my stomach.
this has been going on since July 10.
After all the prednisone and antibiotics it still won't close so now I am seeing wound care doctor and she is treating me with all kinds of wonderful things like honey in the wound and an antibiotic patch.
She also did a culture and I have some sort of "fancy" (her word) bacteria plaguing me that is hard to treat and between my penicillin allergy and chemo meds it is hard to find a drug that works but the team (onco, wound doc, pharmacy doc) decided to put me on Levaquin. It can lead to tendon tearing (so no bike for me) and heart rate issues (so no bike for me). I'm being careful still and I am glad I am done with it.
My onco also wanted me to see a dermatologist...
So she finds a derm she thinks is the right one to help with this wound stuff and gives me her name. I keep forgetting to make an appointment and they keep forgetting to call me.
Finally I get a call from them and I tell them I want to see a specific doctor.
Aunt Jane comes to help me get there since I am now on a walker and we get there only to find out the requested doc is not there on Wednesdays and it is indeed Wednesday.
I pitch a fit and become very frustrated.
Yes, I became "a Karen"...(apologies to my friends KuteKaren1 and KuteKaren2 and KuteKerin)
Aunt Jane suggests we give the doc that I do have the appointment with a try.
Well in walks an angel and she is indeed the perfect fit...God was with me and I was fighting him.
She did a biopsy, a culture, blood work and gave it a good look and told me to continue with her and the wound doc.
BEST NEWS: she doesn't think that my wound should impede me from having surgery so pending the outcome of the biopsy and culture she plans to send Dr Muppet a letter stating I am good to go.
She has me on another antiobiotic and some new topical med and it seems to be working...
Now on to other things---because wait: THERE IS MORE!
Because with me and the cancer it can't just be one little thing like fighting the cancer...
so here's the rest of it...
Just prior to going in to the hospital I had a scan.
I had my first scan since November....and it was a GOOD scan.
In November I had 10 measureable lymph nodes. At that time 5 had grown and 5 had shrunk. Dr. Rockstar and I were fairly pleased with that scan....and it was before we changed my drug protocol.
But then the spine stuff happened and everything went sideways and whatever was happening on the scan was less important than what had happened with my spine.
But then I got to start immunotherapy and a new cancer pill and my CA125 marker started going down and I was feeling pretty good except for some issues that continue to plague me with my spine...more on that later in this blog...
So back to the scan---this scan (from July) looked so much better than my previous few scans...
I'm happy to say only 4 lymph nodes were measureable and all were shrinking...
which in cancer world is a very very good thing...
I'm not NED (no evidence of disease) but it looks like I'm at least stable or that the cancer isn't growing right now...so it's still there but it's behaving...
El Diablo is in a time out!
So now onto the spine and the follow up for the wound...
And as it turns out my MRI I had on the same day as the scan in July has revealed that I still have a serious disk issue so I am in for another stay in Memorial Hermann very soon (probably in November) and there will be surgery to correct it.
I have compression on a major nerve and it is causing pain and issues to my mobility.
And a screw that is loose---and not just the one in my head lol...(reading that sentence should be accompanied by you hearing a drum rim shot in your head as you read...yes it is a corny joke but hey my onocology team LOVES it)
I have been in pain with this since the surgery last year. My left leg will not lift on it's own. I get horrible pain upon standing. I can only stand for maybe 10 minutes at a time.
And it's getting worse...I am more and more dependent on my walker again. Last weekend the pain was so bad I needed pain meds.
It's a miracle I can ride my spin bike at all (but not now) but it is the one place I don't hurt. And where I feel "normal".
I knew there was an issue after surgery because I could not lift my leg off the bed. I was practicing yoga 5-7 hours a week so my legs and core were strong but I could only lift the left leg about 2 inches off the bed while my right leg I could easily get into a full lift that was perpendicular to my body.
Ding ding ding...Houston we may have a problem...
Doc said to wait and let it heal because the cysts on my disk had put a lot of pressure on my nerve and I had some pretty bad spinal stenosis.
Had my 3 week checkup and it had barely improved...but we needed to wait...nerves are slower to heal.
Had another checkup prior to the shut down and Doctor Muppet (he looks like a Muppet but he's very kind) agreed we needed an MRI to see what was going on.
Then the shut down happened and I could not get an MRI.
So we waited...and waited...and then waited until it was time for a CT so that if we needed to do surgery we could see what El Diablo was up to.
The scan revealed the trouble but then I was in the hospital with the fever...and then recovering...and just starting back on my much needed chemo drugs and I wanted a few rounds in me before doing any surgery and then I had to wait 3 weeks to get in to see him.
It's been a long wait to deal with this and it is getting worse. When I was on the massive steroids I was not in pain from it but once they wore off the pain doubled down.
So now I stay locked in my house due to COVID-19, I need a walker to get around most of the time and I am just waiting on this damn wound to heal up.
Plus the knee...but the poor knee still needs to wait...one day it's just gonna give out on me and that will be it...it's so bone on bone I can feel it...and my last round of gel shots did nothing because the chemo ate it up...but I'm going to try it again...
So it looks like in November (if the wound heals) Dr Muppet and I will meet in the OR once again.
I have had surgery in November 3 times since 2016 so why not keep tradition.
November 2016---hysterectomy to remove cancer
November 2017---hernia repair
November 2019---second spinal fusion
November 2020---possible 3rd spinal fusion
(in 2018 I decided to shake things up and had surgery in April...that was the first spinal fusion).
And yes, I acknowledge that it is a lot of surgery...spinal fusion surgery is horrific pain so I am really not looking forward to having to do it again.
I don't really have any wisdom gained from all of this---except that you need to set a timer on your phone when you are in the hospital or you might miss dinner or perhaps avoiding fish is while in the hospital is a good idea or maybe that we all need to keep thermometers around that read farenheit...
I do know that I am being cared for by the best medical team there is and that the nurses I had in the hospital absolutely rocked and my poor doctors still don't have a clue why it all happened but they have me back to being (relatively) healthy---other than the wound and my spine and knee issues.
And a little issue of cancer.
My body is really responding well to the chemo treatments so that is what is keeping me going.
It was not easy being in the hospital alone...and I have had several friends who have had to do so during this time of COVID and it is a very lonely experience to not have a loved one there to advocate for you or to bring you things if you need them. I very much missed having Aunt Jane there to hear things and ask questions and she's always super helpful at getting me water so the nurses don't have to all the time.
And when I had my breakdown that morning it was such a feeling of loss of control and once again cancer robbing me of being "normal". I'm blessed I had a nurse who saw I was falling apart and needed help. I had tried to be brave in front of the doctors but when the reality of the situation hit me it was too much to bear so I am grateful that Jeanna came in and knew I needed some support. I feel bad for other patients who aren't as lucky or for those who can't speak for themselves.
I've survived a lot...and I will survive this...and with God's grace my body will continue to respond to the immunotherapy and chemo pills and my wound will heal and I will get my spine fixed before I damage it even more.
Cancer is a roller coaster...and trust me I want off this ride...
Inspiration Song: "Fever" by Peggy Lee...because no one sings it better...
Bye Darlings...this took me forever to finish...but there was so much to include. Thank you for reading this through because I know it was a lot. Next blog will hopefully be less of a mess...
Monday, May 25, 2020
This blog is a little different...I hope you like it...
I'm laying in a lounge chair in my backyard...it's Memorial Day 2020 and my mind wants to drift back to a time when life was so much simpler.
The sun is going down and there is a breeze stirring up the trees and blowing the scent of the Carolina Jasmine around in the air. It's a large unkempt bush that I refuse to chop down even though it doesn't put out many blooms but those that do still perfume the air.
I see a little squirrel running about in the branches of a tree hanging over from my neighbors yard and nearby two blue jays are having a quarrel while the peacocks that roam the neighborhood shriek and scream in the distance. A fat bumble bee flies at me and nearly gets caught in my hair it's buzz as loud as a saw as I shake it out.
I lay back and close my eyes and set my phone to play songs from my childhood summers...1976 to be exact...a time before my father chose to spend time with another woman and leave our family. A woman who never liked or accepted me and tormented me for years but is now in my past. She's mother to one of my brothers and two of my sisters but to me---nothing.
A song comes on that transports me to my childhood bedroom. It's painted lavender and soft green with a long shag carpet and my camp trump stands open at the end of one of my two canopy beds. The trunk is slowly being filled with whatever I need for camp along with whatever fun things I want to take that I might just want. And lots of stationery...because back then we wrote letters...
I want to go back to camp.
I sip on my Kool Aid since today, in 2020, I am fighting cancer and need to hydrate for the chemo to come. But the taste of the grape, sweet and sugary in my mouth, makes me think of "canteen" time at camp.
I picture my camp friends and counselors...my beloved Camp Director Julie standing on the porch of the "Big House" before we snake inside to load our trays with food that in my memory---was delicious. I can almost taste the strawberry cake, the Hunter's Stew (which I am pretty sure was just Dinty Moore but it tasted better after having sat on a campfire), the sweet tea we drank by the gallons, the pizza cut in squares like at school and most of all the beloved Brownie Pudding that was sure to make all of us sugared up good but could also get us to behave in every possible way since we knew it was a treasured treat.
I hear the sweet voices as we sing our goodnight songs before heading back to cabins to shower and sleep with no air conditioning but the breeze through the screen doors and the whirring box fans (which to this day will lull me to sleep) kept us cool.
I was always on a bottom bunk so each morning I would sit up and get my hair caught in the springs of the bunk above me...woken by the clanging bell that started our days at the best place on earth.
I wish I could stand in the creek once more and feel the icy water rush past me as I hear the sounds of the guns cracking from the rifle range...and wave to the other cabin of girls as they ride past on horses for a trail ride---something I loathed but put up with at camp. I never was good at riding like my sisters and brother were...they loved it...I...survived it.
The peacocks scream again and I am transported back to the 70's and summer on the King Ranch...peacocks roamed the grounds and screamed constantly.
Memories flood back of Cousin Camp where I was forced to ride each day but did so just so I could do things all day with my beloved cousin Henrietta. I waited all year to get to be with her, and CeCe, and Sarah, and Anne Marie, and of course my cousins Mike, Linda, Jamie and Martin who would toss me across the pool like I was a ball.
Cousin Camp was as glorious as sleepaway camp...but in some ways better because we were all family. It was a week I lived for as a child and I mourned the loss of it more than I mourned my parent's divorce. Because of my father leaving the ranch we were no longer allowed to go back and I regret that my children never knew how much fun an impromptu dance party in the pool house could be. Or what it was like to have a pie fight and hear my aunts yell at us not to jump into the pool---which we did anyway. Or to just push the merry go round as fast as we could to see how long we could hold on. Simple pleasures.
I wish I could return to Kings Inn with my cousins or our dear family friends the Canales family and dance to the juke box while stuffing ourselves with shrimp and tartar sauce.
My memories of camp and Kings Inn give way to what Memorial Day would have been back then.
Music on the jukebox plays (mostly Eagles and Abba and Fleetwood Mac) as we swim for so many hours our toes would bleed from bouncing on the bottom of the pool. I can hear my father's laugh and my mother directing where the food should be and asking Peyton to take charge of the grilling as my dad tended to get to talking and burn things.
I see my parent's friends fanned out around the pool---some smoking and having a beer, others bouncing a baby in the water, the dogs running about and trying to jump in. My little sister Katie is in the "baby pool"---a place she was so comfortable in that she would often sneak out of the house, remove her diaper, and sit in the pool with a dog on either side of her. My sister Susan is a baby and is in her outdoor bassinet in the shade of the pool house and my friends, sisters and I try to boss the younger kids around and keep them from joining us in the bigger part of the pool.
The memories are jolted away by the sound of my air conditioner kicking on loudly and whirring as it cools my house.
It feels like 5 minutes ago I was in Kingsville in my backyard in the pool with a camp trunk waiting to be closed and instead I am alone in my own backyard in a lounge chair I bought in a house that is mine alone.
It's 2020 and my kids are in their own places and their father is now spending time with another woman (with my blessing).
And there is a pandemic.
And I'm alone...and a bit lonely but at peace with the lonliness.
I change my playlist to 1982 and remember that May so long ago.
I remember my graduation...praying my parents would be nice to each other and just give me one night where I didn't have to listen to one complain about the other. I solved that for my own children by placing myself somewhere else in the stadium than where their father was sitting.
I remember sitting in the chairs with my hair curled just so in my very hot graduation gown and my cap perfectly placed on my head so as to show off those curls. I sat next to John and we entertained each other during the ceremony and I remember looking at him thinking he might just be the nicest boy I had ever met and I knew he was going to accomplish things. He did.
We had a party at our house where my friend Kris and I made the worlds worst margaritas and my friends who dared to jump into the pool were shocked by how freezing it was. But it was a fun party.
And now back in 2020 I think of my friend's kids who will not get to sit on a track in a hot polyester graduation gown with a cap perched just so on their heads...or if they do it won't be the same as it was when I was young...or even last year. And they might not have a boy as sweet as John was sitting next to them.
My mind then drifts to Memorial Day about 2008 when camp trunks are sitting open in two bedrooms in my old house. It's 3 years before I will leave my ex and the washing machine is broken as I am trying to wash all the camp stuff before packing it. My daughter has just finished 8th grade and my son will be moving on to middle school. We lazily swim in our backyard pool and discuss what needs to go into the trunks and I am disappointed that my daughter doesn't have the same excitement about camp that I did but my son is fully ready to get to his camp and spend 28 days just being a boy.
And then I remember the last summer I had in that house. The kids and I floating in the pool most evenings before dinner...time that was so precious because we would swim and talk and laugh. And I knew that in a moment they would be gone...
I open my eyes and watch the squirrel a bit more...and a lizard who seems to be desperately trying to find a girlfriend. He bubbles out his little red throat bubble and scurries around but I don't see any lady friends around for him to attract so maybe he's doing it for me.
The air conditioner has quieted again and I say a prayer for my friends who are in the hospital battling COVID. They are a dear married couple who have already had a hellish year because their house burned down (killing all their fur babies) and their daughter is one of my seniors. He is in one unit recovering while she is in mid-battle in another unit of the same hospital. She tells me that the nurses relay messages between the two of them and my heart breaks that this is how their daughter's senior year is ending. This is not how Memorial Day should be for them or any of us.
I look down at my raggedy nails and long for a manicure but my doctor warns me that I am at too high a risk because of my cancer. So they will look awful for a while longer.
My hair, once so bleached blonde from hours in a swimming pool as a child (and sometimes green thanks to that same pool) now needs Sun-In (yeah I am old school) to lighten the roots. My hair is not the shiny platinum of my youth but is now a brassy golden blonde that could really use a cut.
But no one is seeing me and I'm not allowed to go out to eat or shop so who cares what my hair is like. Besides it is always residing in a pony tail atop my head.
I'm stuck in my house...or in my backyard.
But as I feel the sun getting lower and decide to move inside and write this all down before it leaves my head I feel gratitude...
I had a great childhood despite some hiccups along the way.
I didn't have a great marriage but I have wonderful memories of my own kids when they were young and we enjoyed the summer together or when I packed them up to go to their own camp.
I worry for my friends but am grateful they are responding to treatment and I pray that I will not be texting any other people I love in the hospital.
I stand up and my nerve that is pinched in my left leg reminds me that my body is damaged and standing is not as easy as it was last summer...before the second spinal fusion.
I take a few last sips of my Kool Aid and make my way inside to fill my glass again lest I have an oncologist fuss at me for my creatinine levels once more. I head to my shower to wash off the sun and the sweat just as the katydids start to sing their songs...visions of summer's past blowing through my mind.
Summer has started...what memories are there to be made in a year of a pandemic?
Only August knows...
Inspiration Song: "Summer Breeze" by Seals and Crofts...because the summer breeze reminds me that once again we will all feel fine....
Bye Darlings...I hope you enjoyed my reverie...and maybe it reminded you of the summers of your past...and let's pray for the one that is before us...and please pray for my friends and all the sweet seniors who have had their school year end this way...