blogkelleyb

[blogkelleyb]

I have a hole in my head!

So i have a hole in my head. A real actual hole.  Now covered by a titanium steel plate to protect the aging brain below it. But a hole none the less.  I haven’t blogged with the surgeries and the trials and tribulations of them. Suffice to say I am approaching the one year mark since my diagnosis of gastric cancer. That comes January 24 and it has been a year like no other.  I am now minus a stomach (yes all of it) and a spleen (all that too) a bit of my pancreas and a chunk of bone out of my head the size of a toonie.  That spread of cancer from my abdomen to my skull automatically moved me from a stage 2 gastric cancer to a stage 4.  The emphasis now is no longer on cure but on treat and extend life.  

I discovered the little lump on my head while recovering from having my stomach removed in June.  My hair had started to grow back and I thought it was this mole that I knew I had and perhaps I had irritated it shaving and it was now a little cyst.  It was sore and I slept with my right hand up beside my head which leaned on this cyst.  Annoying so I made an appointment with the family doc who is wonderful.  He saw me in his office and agreed it was probably a cyst and sent me for an ultrasound.  The radiologist asked to do a ct scan after this which of course gave me pause.  Then a phone call from family doc after ct scan saying this little so called “cyst” is invading bone.  I knew immediately it was cancer.  All the way up on my head?  Yep it was.  I was scanned from head to toe and every inch in between.  My oncologist stopped my chemotherapy which upset me.  I was referred to a Neurosurgeon at the teaching hospital a couple hours away.  Next step surgery.  All the tests showed no other active disease in my body so they agreed to take this piece of bone out of my head.  It is gone and all margins are clear so that was a successful surgery.  The recovery mind you has been absolute hell. No other word for it.  

About a month post craniotomy, I developed this nausea.  I get it after every surgery it seems for a few weeks. Comes on gradually and goes away gradually. This time followed that pattern as well but then took a sharp turn into “lets do this every moment your awake”.  I was miserable and had every damn reason to be.  Being nauseated is a horrible fucking feeling. Everyone knows this.  I don’t throw up like a regular person because I have no stomach. What happens is I just throw up my own saliva that has accumulated in my intestine and dry heaves are after that.  Barfing is not what makes people miserable, it is almost satisfying to barf when you are nauseated. You get some sense of relief although it may be short lived.   Living with 24 hr nausea can make you feel like you just want it all over with. Then I had a call with a social worker that works out of the cancer clinic imply to me that I didn’t have long for this world.  That made me feel like giving up for sure.  She was wrong and the family doc was not happy at her saying something like this.  The truth be told I have two little angry lymph nodes in my abdomen that are where my spleen used to be.  They are cancerous. The plan is to start a new chemo regime to make them go back to sleep and not spread anywhere else. The chemo has been delayed because of my ongoing issue with nausea.  He said how can I put you on chemo when you are already on all these anti-nausea drugs and they are not working. Add chemo to the mix and imagine how you sick will be.  But alas with the help of my wonderful family doctor, my meds were revamped and I became nausea free within 36 hours of leaving his office.  

I really thought we were not going to have a Christmas. My oldest was coming from the big city and I so wanted it to go nice. She wasn’t home last year because of Covid.  And yeah Momma is stage 4 I may not see next Christmas lets be honest here.  I may, but I may not and I was acutely aware of that. Not only did we have a Christmas we had the best Christmas since before my late husband passed away.  It was stress free and peaceful. No drama from the Momma whatsoever.  My nausea stayed away and I ate my way through more boxes of shortbread cookies and my daughters homemade party mix than I care to admit.   We exchanged lovely gifts. We laughed. We loved. We made memories and that is all I wanted to do.  So yes Virginia there is a Santa Claus. He came to my house for Christmas this year.  

The hole in my head is healed.  The pain in the bone decreased a lot. All 14 staples removed and the hair is even growing over it so the little dent left behind isn’t really noticeable.  I didn’t much care if it was but that is a nice bonus that she hid it well in hair line.   So now the nausea is under control I am anxious and ready to start my new chemo regime and lose my hair a third time. My daughter bought me the warmest toastiest toque  to wear after I go bald again.  This means chemo in the winter with the cold sensitivity and tingling.  Should be lots of fun.  I don’t know how many or how often I have to have this chemo.  I will find out in a couple weeks when I see him.  But I have warm and cozy pj bottoms, pull on slipper socks and a fuzzy white toque to wear so I am armed and ready.  Bring on the poison 

[blogkelleyb]

If you’re a nurse during Covid

I wanted to be a nurse from the time I was a young girl. Okay I wanted to be a vet way more but I knew I would afford to go to veterinary college. From as long as I can remember I helped my grandmother with her personal care.  I never thought a thing of it. Someone needs help, you help them.  It felt like a good second choice for a career.  And not only did I love it, but I was pretty darn good at it too.  It was the only role in life in which I felt completely confident in my ability.  I can’t imagine being a nurse during Covid. 

I know this much be a terrifying time for you as nurses. Not only are you putting your life on the line in your job but your families as well.  Nothing you do in your job is the same anymore. Every single task now involves another step. Like you weren’t busy enough before? And your in great demand. So many off either sick or taking care of sick family members. Overtime in the time of Covid must be brutal.  I am sure there are a hundred other issues I can’t even comprehend because the closet I came in 25 years of nursing was Sars and we never had a case here. I just wore PPE and screened incoming patients for weeks one summer. Yeah I got nothing. 

But if I can I would like to make a request.  Can you remember how it is also terrifying for your patients.  We pretty well all know if we get this virus we aren’t likely to survive.  We are quarantined in our homes. We don’t do groceries and errands if we are lucky enough to have someone to do it for us. And I am. The only faces we see other than those we live with are yours. And we don’t get to see them.  There are no smiling faces to greet us for chemo appts. We watch your eyes intently trying to gauge a friendly face. We are super high risk from this virus, like we needed that extra fear right now? We are scared.  Please show your personality in your voice. Chat for a minute about something other than cancer or the virus.  We understand you’re overworked and exhausted.  Remember we now have to face two things that threaten our lives at the same time. Lets both be mindful that nursing and cancer in the time of covid really sucks. 

[blogkelleyb]

Good God

So okay I guess the steroids haven’t quite warn off yet. This is just another rabbit hole.  I am sure you understand that when faced with a critical illness you turn to religion, either to cling to it or to question it.  It is the logical rabbit hole to follow the others. “Oh shit, I am going to die and I wasted time worrying about dumb shit and now I don’t even know if there is a heaven or even a God and yet I could be on the verge of meeting him.”

I respect others religions or absence there of. I have no delusions that mine is bigger, better or more important than other peoples religions. I think you can mix and max things that feel “right” to your soul without worrying about committing some deadly sin for crossing one religion’s invisible fence line. I respect yours and you respect mine thats how this works best.  Less war and shit. 

My belief in a higher power or God came at a young age at the knee of my Baptist Grandmother circa 1901.  She lived with us from the time I was 2 and I adored her and she me.  That became really important later on in life. But I will be frank she was victorian in her thinking.  She had one child, my mother who was not expected nor desired by my stout stiff lipped Grandmother. But she had her and loved her and made my Momma a little of bit of a rebel.  She was the filter in the coffee pot between Baptist Grandma and the children of the home.  She didn’t take us to church nor attend herself. But she was a believer in God.  We didn’t pray at the table but I do remember being instilled with the “fear of God” (I don’t remember whether that was Gramma or Mom but I am banking on Baptist Grandma”)

I remember praying quite a lot as a child especially but continued to all my life. Not a formal prayer out loud just a silent prayer.  And I have prayed a lot since January when I found out I have cancer.  I have probably only prayed this hard at one other time in my life, when my husband was diagnosed terminal cancer. Similar prayers 14 years apart.  But I “had” this unhealthy fear of God but also a complete disbelief in the Bible and the whole concept of a white Jesus. So wasn’t sure I was going to heaven cause I am kind of outspoken. But I am also a good person I think who would at the very least not cause any trouble up there.  So I guess if I am to be totally forthright I don’t believe there is actually a person up there I believe that heaven or God is Peace. love and calmness that we all seek in life.  To have the majority of your waking hours spent in peace and contentment. Who the hell wouldn’t choose that?  But there is a catch and today I realized what it was.  You have to let go of the worry, and the fear and the self criticism . You made mistakes and you will make more but being “woke” means this time you will learn from them. 

[blogkelleyb]

Try not to worry

So how many of you are worriers?  I don’t mean your average worrier.  Most people (at least those with common sense) worry when your teen is late home from a party, or they are calling for a bad snow storm and you have an important doctors appointment.   That is called survival worry in my eyes and either you have that or, well I think Darwin already took you out.  No I mean folks like me that have spent their entire lives anticipating and worrying about the worst possible scenario in every minor event and the catastrophic ending result there of. Yes, THAT kind of worrier. 

May I say it’s exhausting?  And life shortening so the medical gurus tell us. And lets not forget worry isn’t a “feel-good” emotion one actually wants to spend much time wallowing in.  But we do.  Why is that? Well sit right back and grab the popcorn and I will tell you.

Because we secretly believe that whether or not we worry about something has a direct impact on the outcome of the said event.  And how fucking bat shit crazy is that?  We actually believe that if we worry about a car accident and a possible horrible outcome then that car accident has a “significantly” less chance of happening.  Any worrier out there that says they don’t think this way at least to some degree isn’t being honest. Sorry I had to break the code there Team Worriers, it was time people knew what drove us.

So again as per previous few posts I am facing a health crisis.  You go down dark rabbit holes with thoughts and emotions and a whole lot of “Worry” Not just for an hour or two, or a day or a week. Years for some.  My God who would begrudge a cancer patient the right to do some serious worrying...guilt free. So in the first six weeks of learning I had Gastric Cancer I had a full-time job lamenting to myself about how if I was died today that means I spent so much of my life worrying about things that never happened while being kneecapped by things I didn’t know to worry about. Time...our most precious commodity and we waste so much of it don’t we? That thought can make me really angry and really really sad. So when I combined the two latest rabbit holes “omg what if I am dying” and “omg I have wasted precious time worrying for nothing” and came to these two trains of thought, either, “ I would have a right to be bitter and angry that I did that”. Or “Yes I did spend too much time worrying but I know it came from love so that is never wasted. And no one knows how much time they have, I choose to spend it not worrying. As Prince Phillip would say “I think I have done my bit”

[blogkelleyb]

Had another epiphany...thanks steroids...

It dawned on me this morning how mind and life transforming cancer can be. Don't get me wrong there is some scary and very unpleasant shit that comes with this diagnosis. But there is also profound realizations about your life, your future your family, those you love. It is really quite amazing. 

So what I have learned so far? OMG a ton. One thing I am learning is to let go of the rage. I am an old PTSD human from way back and I carried a lot of rage about things that have happened to me that were so wrong.  I am learning that rage is often just griefs other name.  And boy have I carried a lot of that in my life with losing the number of family members I have in the last 20 years. I had good reason for both emotions and both have served me well when needed and both have devastated me.  But with the help of a great therapist and trust me she is really that good I am finally learning to clean out Pandora’s Box rather than trying to close it again.  And that has been an interesting and the most rewarding journey so far.  

I am learning to let go of the rage and it is going. I feel it more every single day I wake up. I have more compassion and am trying to look at why some people act as they do and frustrate me.  (Anti-maskers and anti-vexers mostly these days) I am just getting off a 30 day facebook ban for violating their terms of service for being mean. I was but not bad. And now I face another because they are behind on their banning folks for something else a tad nasty I said before I got sick. Being able to see but not like and comment has actually been good. The timing is unbelievable really.  I have no choice but to learn to let the negative comments and anti-masker bullshit go by. I can’t comment and I am learning by reading the comments that no amount of science info seems to change their mind whether delivered by me or Public Healthy. Why am I wasting my time to argue with them. Wasted, negative energy. So if I do get another 30 days I will miss doing my weather posts but I will try and get that much farther into this journey of “don’t argue with people online”.  I try to remember that although we are all in the same ocean during this pandemic we are not in the same boat and it is affecting everyones lives in many the same ways but also quite unique. I need to remember that. What is important to me right now during this is staying safe of course. I am super high risk. So I don’t go out except for medical appointments. I don’t go to grocery stores or run errands. My daughter does all that now. All of it.  I don’t see my best friend only for outside deck visits. (Please warm weather come quicker I miss her a lot) 

I am learning to have boundaries and for the first time in my life voice them. I am learning to listen to my body and slow down when it says so. If I don’t feel like doing something I just don’t do it unless it pertains to my treatment. Housework? Cook? Whatever, I just say not today.  I am finally at almost 60, realizing what “Self-care” really means. And I am practicing it. And it feels wonderful.  

But with those boundaries I have also realized that this cancer and its side effects and journey not only effects me but those that love me and I love. It is hard for people that love you to see you have these difficult times. It causes them pain. I have been there I know that to be true.  They have to have boundaries too and I have to respect them.  They don’t need to hear about all the negative side effects and fears. Some want to hear none of that. Some want to hear every gory detail. It is a learning process for me to find where you fall on that curve. Be patient with me. I am learning.  Not everyone can deal with someone rambling at them for 24 hours about really random stuff. I remember going through it with my husband when he was on steroids.  After 8 hours it was like my god man have a fucking nap would you?  ROFL. I get it. And for some who like me have lived through this loss over and over with family, perhaps it brings those hard times back for them. Another family member sick with cancer and the others didn’t fair well, this is scary.  I must be mindful of who I share things with and take the cue from them where they want to be on that curve on that particular day.  There is zero hard feelings or hurt on my part for this. Absolutely none. And isn’t that was enlightenment is suppose to be? You learn and you understand, and thats that. Its a beautiful thing. End of TED TALK LOL

[blogkelleyb]

Cancer treatment in the time of Covid

So I have finished my second Chemo treatment 3 days ago? Why not blog after the first? Well cause I was a potato thats why. That is my new term for the overwhelming exhaustion that comes with my friend Chemotherapy. It is interesting but nothing I have experienced before.  I lie, 10 years ago I was super ill and left Kingston Hospital 88 lbs. I know weak and it is a scary feeling and yeah I called them.  I found out it is completely normal, give in to it. Ok will do don't have a choice because I don’t have the energy to do more than make myself a cup of tea. My daughter is doing the rest and doing it well. I can relax and just be a potato if I feel like one.  So I was for about 3 days. 

Around the same time my mouth started to get sore. First kind of coated then raw feeling and really chapped lips.  My daughter went to pharmacy and got some special spray that is all natural and helped with the dry sore mouth quite well. She also got special mouthwash made for the same issue. It helped and it passed in about 4 days. 

But that wasn’t the first side-effect. I had very mild “hand-foot syndrome” Google it because it is fascinating, and can at its worst be horrendous.  It is extreme skin sensitivity to cold. First discovered when I got home from first Chemo and reached into the fridge for a pepsi.  Zap, every finger touching the can starts to tingle intensely. You know that feeling when a limb or hand goes to sleep and I mean dead asleep no feeling and then it starts to wake and you hit a max on the tingly feeling? Yeah it feels like that. Not painful, disturbing definitely uncomfortable. Then I took a drink of the pepsi...OMFG my mouth and throat are tingling like crazy. The answer? Warmth. A tea, no cold drinks and don’t touch anything with your hands that is colder than body temp. Warm that water up before you wash your hands. Etc.  It lasted a day and gradually improved. 

The third and least noticeable side-effect is actually not due to the Chemotherapy but the high dose steroids that they give you before and during to help combat them.  Steroids give you a false sense of wellness and I get very chatty to say the least. So yes I noticed this and the fact I felt pretty damn good the first 3 days after.  But I know having been on steroids many times for my Colitis the fall going off them is kind of harsh so this probably adds to the chemo exhaustion that hits on day 4 and your done your 3 day steroid regime. 

So lets look at the positives of this treatment shall we? I didn’t barf, not even once. Nor did I even get nauseated.  I was terrified of this side-effect. I mean worse than hair loss by far.  Like I said I know what it feels like to be 88 lbs when my good weight is 135.  I weighed 137 when diagnosed, my weight at my first chemo was 112. I have lost 25 lbs already and the treatment hadn’t even started yet.  What was I going to look like going into surgery, will it affect the outcome, will I be healthy enough to get it at all or will it have to be delayed risking my life?  Yeah it was a great big fat hairy deal. And I didn’t get sick. Can I have a “Hell yeah” 

The second side effect is just as exciting folks, I found my lost appetite and oh boy is it back with a vengeance. I fell like I did 10 years ago like I have an insatiable tape worm.  It started to come back around day 5 post 1st chemo. And each day became stronger and stronger.  I was eating bowls of ice cream at midnight and making bacon and eggs at 5AM.  I even appealed to my friends who brought “Mac and Cheese” and “Oven pot pies” And I ate them all and at my weigh in before starting chemo I saw the beautful number 118.6 lbs.  Omg the joy I felt I can’t tell you. The relief....1000 lbs literally off my shoulder. I am so holding on to the hope that it stays around. I expect during my potato days, it won’t be as good. But I will remain hopeful that the tapeworm stays awake and keeps eating. 

But then I got my second treatment 3 days ago.  It was different. The nausea? Nope its fine none of that at all. Appetite seems normal not bad but not ravenous.  The hand/mouth, wow. It began as I arrived home from my treatment. My hands and feet and lower legs were tingling like crazy and I was touching nothing and fully dressed and had a coat on.  The cold air, It was like minus 2 or something out.  Wow what if it was in the middle of winter how would this feel?  I come inside and its pretty intense. My daughter gets me a cup of hot tea and heats up my hot pack to put my hands in like I did first round. It helps. I put on my legs it helps them too. 

I have a chemo bottle attached to my PICC line that goes into the large vein in my upper body into the upper vessel of the heart. Regular arm veins used for IV’s  can't take chemo drugs, That chemo bottle is to drain over a period of 24 hours. I carry it around for those 24 hrs in a little bottle bag around my neck and navigate the tubing.  Then the next day I get into the car and drive to Para-Med and they remove the chemo bottle, dispose into the toxic waste container and redo my dressing on my PICC line. I go home. Except two hours later I note the bottle of Chemo is not draining.  I call, and they tell me I have to go back to hospital so they can fix. I did, it sucked, I tingled the whole way but did get to ask that nurse about it too. Yes it’s normal but yes we watch it some have a problem.  Am I going to have a problem? I hope not she says. Yeah me too.   

We drive home. I decide in case this gets worse I should take my shower while I am stable on my feet. I do so and it was  glorious hot water. No tingling, until I stepped out. OMFG again. Bare feet on the floor, naked and shivering. Ok now its painful. This bloody sucks.  Get dressed in flannel onesie right away. Get big winter socks on and get that hot pack. Ok I am good.  How bad will this get?  Is this something that could interfere with my ability to get regular prompt continued treatment so I can have surgery and be cancer free.  Is this threatened?  I have two more treatments and will have a long break in-between these treatments my surgery and my recovery and restarting again. It should get out of my system.  But the effects are cumulative, how bad will it get? Can they give more steroids to counter act this effect and keep it controllable. You can bet I will be asking all those questions to my Oncologist when I see him before my next treatment. My daughter is going with me and will make sure I miss nothing with my hearing and that I get all my questions answered.  Thats a very good thing to do together.  And good news, the tingling is improving this morning. Whew!

I don’t know what the exhaustion will be like this time.  I was what I called “baked” yesterday.  Like you took that extra THC gummy at bedtime (oh chill its legal and I only take them for sleep) except they are always worn off by morning with zero hangover effect. Baked with a really clear logical mind and a mouth that just will not stop talking. Like there was no filter, if something ran though my head it came out my mouth.  My daughter from previous experience with me realized it was the steroids!  And then we laughed and laughed and laughed until our bellies hurt.  The poor girl finally was able to retreat to the privacy of her room and I would still come down the hall to tell her more pearls of wisdom from my mind.  I carried on a running commentary with my best friend over messenger from the early morning hours before the sun came up all the way to bedtime and yes she too finally just stopped answering me. I think its hysterical. But I get that it may be a tad annoying to others. So I went into my favourite facebook group for women over 40 that play the video game “Animal Crossing” Oh don’t judge that either, hottest selling game of the year last year, absolute record sales and got many of us through this damned pandemic. Just minding our islands and building homes and fishing etc.  So peaceful, so non political and so damn cute.   So yeah headed to that group and made two new online friends and yep they probably won't message again but they were kind to me. This side effect will pass today as the steroids wear off and the exhaustion kicks in.  I suspect it may be little worse and last a little longer than last time. If you don’t see a new blog post till next treatment, thats why. See ya when I am no longer a potato. 

[blogkelleyb]

So now I know

So I had my appointment and good news, from all the scans and biopsies and abdominal fluid bath, there appears to be no spread. Stage 2. Treatment, 4 chemo treatments with four different drugs, 2 weeks apart.  Then a partial or total gastrectomy (partial or full removal of my stomach) And finally 4 more rounds of chemo 2 weeks apart to “clean up” as my thoracic oncology surgeon described it to me.  I am a very lucky woman. I had little to no symptoms of this cancer. No nausea at all, no heartburn nothing. All I had was a bit of a decreased appetite all of January.  But alas I also have had Colitis my whole adult life and that is far from abnormal for me and may not even be related. In fact they don't think it was.  So because of one disease they find another what an oxymoron that is.  But although Colitis can be dangerous (burst intestine) it is not a common outcome. The cancer, well if I don’t get surgery then it will kill me probably in a couple years. That brings me to the topic of my post today. How there may be a real significant shift in how I view the world going forward. Oh hell, there already is and it will never be the same as it was. And “news flash” it isn’t all bad. 

I don’t want to pretend i came to that conclusion lightly. The first two months after diagnosis was brutal. No other word for it. Every waking moment and believe me there are a lot of those late night cry sessions that you have held in for two days and just can’t any more. What if I am dying? What if I die a horrible painful death? What if I have surgery and I have to be fed with a tube the rest of my life and I never get to taste a fresh strawberry or a cup of Red Rose Tea. How can I leave my family, they will be so sad. I don’t want to die yet there is still so much life to enjoy. And these thoughts went over and over and over in my mind and a thousand more believe me.  And it was depressing and sad and scary and yes at time downright terrifying.  But slowly the thoughts calmed and I decided since my brain was clearly going to go down that rabbit hole why fight it, go down with him....face the “what if’s” And so I did. 

I thought about each one starting with the worst of course, “What if I am dying?”  Okay what if you are, now what? Well there are things to be taken care of, written down, talked about, shared, put in order etc etc. Ok, do those things. One at a time, do them. So I wrote letters for my daughters. Telling them how I feel about them our lives together. Telling them important info of course different for each one they each got their own letter.  They are with my will so likely won’t be seen until I am gone so won’t cause them distress. They are good letters they are not meant to cause distress but instead peace and I believe they will. Boy did it feel good to write them and get some of that emotion out and the important financial stuff etc you fuss over in your head.  That eased a lot of the dread believe it or not.  I found out that I am not really afraid of death or worried too much about dying too young. Turns out my biggest concern is dying before my daughters are near ready for me to.  Why? Because I have said goodbye to a Mother, a Sister, a Brother, a Husband and 2 wonderful brother in laws long before I was ready to.  I know deeply how that feels.  I don’t want them to experience that.  

Then I noticed because so much of that sadness and worry were gone I could have frank open conversations about the “what-if’s” with my family. And it wasn't as hard as I thought it would be. And they felt really good to have them. And each one eased more and more of my worry and concern that they would be okay either way. It was a journey like life is and we don’t get any guarantees. It is a lesson that screams “live your life now” doesn’t it?  We are not all meant to learn the same lessons. 

[blogkelleyb]

The last day of not knowing

Well it is here, the last day. The last day of not knowing if I am going to live or die or somewhere in between.  You see, I have cancer. I found out 39 days ago. I am guessing one never forgets that moment you hear those words. We found a tumour and it is cancerous. I never understood people that didn’t want to know. That had physical symptoms and didn’t seek treatment etc.  And yet...here I am. I have the added knowledge or curse (depending on how you look at it) of 25 years of nursing experience behind me. I have watched too many people die of this horrible disease. Far too many.

I got up early this morning as I do most mornings.  Grabbed my Boost drink and pop from the fridge. (its not an oxymoron, don’t judge) Turned on the kettle and looked out the window.  This is the last day I will not know. Today I see my Oncologist. At 3pm and he will determine or has determined the course of my treatment.  He will tell me whether or not he can help me fight this disease or whether it is the beginning of the end for me.  Does he know how much power he holds?  Did he get up this morning and realize that he will be delivering news to patients today that changes everything.  I guess everything has already changed hasn’t it? Once you hear those words you are never the same. There are no do-overs.   For that few seconds when you waking up in the morning life almost seems normal. You feel okay, you are not in pain or have any immediate symptoms.  And for those few precious seconds you forget and feel normal. Then boom, you remember that things will never be normal again. At least not like they were. There will be a new normal.  Not having a clue what that looks like is bloody humbling and incredibly frightening.  

I am a control freak, always have been.  I have no control over what happens today, only how I react to it.  My best friend is coming with me. They said I could bring one person with me.  Ahhhh Cancer treatment in the time of Covid. Added bonus of going it alone.  I asked her to come because I have no control and she has the ability to ground me.  I don't know what he will say and I don’t know how I will react.  And then I have to come home and tell my daughters what he said.  They are both thinking the same things this morning I am sure. What will he tell her? I have been doing this hurry up and wait thing for 39 days. And now that wait is over I want those 39 days of ignorance back. I get it now. Why some people just don't want to know. I am not one of those people and I have to know. But yes I am looking back at the last 39 days and thinking I could live with not knowing. But that is not fair to my children and the people that love me and could end my life. Because knowledge is power, I have always believed that. When I come across something I don’t understand, I research until I do. This will be no different. I haven’t done a lot of reading on stomach cancer since finding out. Why? Well part of me just needed time to digest the words “you have cancer” without all the dirty details about it.  I have accepted now that I have it despite not having pain at the moment.  Knowledge about exactly what kind of stomach cancer and what possible treatment is available will empower me to some degree. Or devastate me.  “Ah there’s the rub” as they say. 

So on this last day of not knowing I am going to try and remind myself why it is good to know. Remind myself that not knowing is slow torture.  Remind myself that none of us get out of here alive. Ill health is a human condition we will all face.  Something has to take us out.  I have always said I didn’t want to end up in a nursing home not knowing my family and sitting in a chair all day. Well it looks like I got that wish.  I have known people who have lost someone suddenly with an accident or heart attack. Is one way better than another? I guess you would have to die each way and try it which isn’t possible. its really about those left behind when we die isn’t it?  We want to make it easier on them.  Thats what it is really all about. Is it better to go suddenly so they don’t have to watch you go through suffering of chemo or pain? But then again you are then denied the opportunity to tell people how you feel about them. To help them prepare for the day when you will be gone. Because we all will be. And we will leave behind those that love us dearly. We will do our grieving before we go and any suffering will end.  It’s the pain we leave behind that torments us. I have lost too many family to this terrible disease. I know the pain of watching them get worse. Watching them in pain and distraught and yeah it was hell. Thats the fear.  I don’t want them to feel what I have felt too many times before. But death is as much a part of life as birth.  We must all face our own mortality. 

So I throw the kettle back on and decide to have another cup of tea. I have four more hours of blissful “not knowing”.  And I am going to enjoy them. 

(Last minute edit....Oncologist office just called and rescheduled my appt for March 10th.  He wants to wait for the results of my laparoscopy on wednesday. So I have ten more days of not knowing. Not sure how to feel. Maybe a good thing that I am not facing surgery on wednesday with possible doom and glooms news hanging over my head. I will just focus on getting through that and recovering in my blissful ignorance. And maybe by the 10th I will be a little stronger and able to handle the whole truth.  I don’t really have a choice do I?

[blogkelleyb]

The Ultimate Narcissist

The last four years have been interesting. Watching the United States political shit show has made me learn more about American Politics than I have ever wanted to know.  Like billions of other people around the world, I never dreamed the orange monster would win in 2016.  I was living with a narcissist at the time and recognized immediately the similarities between the two men.  One main one is they have no conscious.  There is one motivating factor for narcissists and that is “how will this benefit me?” Every single thing they do comes down to this one deciding factor.  Trump of course is the ultimate narcissist.  He has never had a shred of morals or values or empathy or anything else that makes a person worthy of the highest office in the land. Failed marriages, failed businesses and now a failed presidency.  But as shocked as I was by the 2016 election, i was more shocked by the 2020 election.  I was one of those naive individuals that believed their would be a blue wave and he and the republicans that supported him would be soundly beaten and dignity would once again reign in American politics.  That didn’t happen.  Instead over 70 million people decided that this horrid morally corrupt man should have 4 more years in office.  I have never understood Trump supporters. I had a friend that is one. Well I don’t think we are friends anymore because she has not only drank the koolaid she is injecting it completely and even following the Q-Anon conspiracy theories.   I drew the line at that one. It was one thing when she was trying to tell me how Trump was going to save America, but quite another when she told me she believed the Q-Anon crap. I hung up on her and hope she loses my number. I can’t have that kind of crazy in my life.   Yahoo almost 60 and I have finally learned boundaries! Hallelujah

I have been deeply disturbed since the election at the realization of how many people were willing to set aside the racism, bigotry, homophobia, xenophobia , islamophobia, bullying, pussy grabbing, rage filled tweets in order to not have to hide all their own prejudices anymore.   I am sure not all of his supporters are racists, but clearly racism is not a deal breaker for them. All 70 million of them. Because if any candidate I supported showed any of these traits they would no longer be my choice for any public office.  What a world we live in eh? It is damn scary to think there are that many people walking around with that mindset. It isn’t enough to not be racist anymore, you have to be actively anti-racist. That means instead of remaining silent when the office jerk tells a racist joke, it means speaking up. Calling it out and demanding better.   Hence why I hung up on my friend of 30 years.  I used to humour her and listen to her go on and on about how wonderful Trump was.  Then one day I just couldn’t do it. Just like how I used to watch “Live PD” on television.  Until the day I watched in horror as George Floyd  was murdered by 3 police officers with a knee to the neck.  Suddenly that week as I watched the tv show I started really paying attention to how many more people of colour were pulled over than whites. How many were taken from their cars and searched. How many whites were written tickets while people of colour were held at gunpoint for absolutely no damn reason whatsoever.  I had to turn it off, I couldn’t watch anymore. Others obviously felt the same way as the show was cancelled within 2 weeks. As it should have been. I haven’t watched any show like it since. It isn’t enough to stand by and watch, you have to speak up and keep speaking up. Only when it is out in the open and talked about will we be able to change it..  I do feel a little more hopeful this week now that Biden has won.  But just like most narcissists Trump refuses to see the writing on the wall.  And he won’t concede. He will leave but he will never admit defeat.  It will always be that he was robbed and cheated and should have won.  I tried to imagine in this pandemic what it would be like if I still lived with the narcissist and had to quarantine with him. After the shudder rippled through my body in disgust I gave thanks that I am free. I don’t allow racists, narcissists, homophobics etc into my life anymore.  But 70 million American’s worship the ultimate narcissist.  I probably won’t live long enough to see Trumpism gone from this world but I sure hope to hell my daughters do. Because this world is in serious trouble and this election showed that above anything else.  

[blogkelleyb]

Where did that decade go?

Risking sounding like my Grandmother, I have to say time really does fly. At the moment when you are awaiting something to happen. An event or a season to arrive it can seem to crawl. Then you realize that 20 years has been spent waiting for something to happen. Good, bad or indifferent, the world continues to spin.  I live with CPTSD or Complex Post Traumatic Stress Disorder. Those that have this have a tendency to always be on high alert. We can't relax and enjoy ourselves because we are waiting for the next shoe to drop. And drop it will. Because that is just life. Some of us get more shoe drops than others and at times that seems really unjust.  One can get caught up in the injustice of these shoe drops and I have, many times.  But what I am coming to realize is that all the worry in the world, all the anticipation and attempted preparation does not prevent the shoe from dropping.

Reflecting back over the last decade even, so much has happened. Some really good things and some really bad things.  I have survived the bad, even though I came close to not surviving.  But what is more important is the question “have I embraced the good”?  Do I really believe that if I relax and enjoy day to day existence that I am willing bad things to come?  Because that is how it feels when I try to do so.  That I can’t allow myself to let my guard down and be unprepared for that shoe to drop.  And yet it has still dropped. Sometimes its a little shoe and sometimes an army boot, but it drops all the same.  I think of how much time I have spent anticipating those drops that never came and it feels so wasteful.  So here I am January 1st, 2020 and 58 years old and I have decided to try just one resolution...stop anticipating the shoe drop.  Just deal with it when it does in the best way you know how. Ask for help if you need to but don’t spend every damn waking moment waiting for that fucking shoe.

[blogkelleyb]

If you could change one thing...

Have you ever wondered to yourself what life would be like if you could go back in time and change just one thing?  Now obviously we can’t do that but be honest, you have thought about it haven’t you?  If we are going to explore the impossible we should be honest with ourselves and not do so with that thought that others may judge. It is imagination and you're allowed as a human being to use that gift whenever you choose.

Maybe there is a decision you made about your education or career that you wish you could do over.  Perhaps now that you're not 18 but instead in the full blown adult stage of your life, you think back and wonder why in hell you ever chose the career you did?  You love animals, so why didn’t you pursue a career that involves them?   Maybe you hate math and yet here you are crunching numbers every damn day. 

Do you look across the breakfast table and wonder why you chose that person to spend the rest of your life with?  Maybe you think about the one you let get away instead and wonder how life would be different if you had chosen them instead.  And the offspring of that union, do you wish you had more, or less or the same?  

The choices we make in life although at the time may seem appropriate and wanted, can later in life come back to haunt us.  We really shouldn’t be deciding on a career before we even know what the hell it is like to have to pay rent or buy food.  Let me be completely frank here, we have absolutely no business making any life altering decisions before age 25.  No disrespect to the young folks out there but you have no idea how you are going to feel about literally anything 20 years from now. 

Maybe you would like to lose the partner and keep the kids? Or lose the career and change the city you live in?  Fantasize away my friend because that’s what this is about…imagination.  We know as full blown adults that people can be really awful to us.  They are dishonest, they cheat, they abuse us, bully us and make us wonder why the hell we ever gave them the time of day to begin with when they are such shitty human beings. Yet when we were 18 or 20 we were in love and were going to spend forever together. Anyone over 30 knows that is a load of crap found only in fairy tales and movies.  Maybe if you had it to do over again you would chose to be alone and free to make all your own decisions without ever having to consult another person about them.  Or perhaps you're alone and wish you had not turned down that proposal and instead got married at 18 and had 3 kids before you were 21.  

Let's explore this a little further, what if the only thing you would change is what someone else did?  Something that impacted your life in a negative way and forced you to make decisions about your life that perhaps you may not have made or at least would have made differently had you been given a choice.  For example if someone chose to drink and drive and as a result killed someone you loved.  That would have a profound impact on a young persons life and the choices they made.  Were you bullied in grade school making every day torture and causing you to hate even going to school at all?  That would have a huge effect on a Childs grades and attentiveness to studies which would have serious long term impact on their career and life.  Perhaps not as profound but still life altering, what impact did where your parents decide to live have on your life?  Was it an economically depressed area with little chance of a good career and a smaller chance of getting out of there? 

Thinking about all these possibilities just boggles the mind doesn’t it? Because it makes us realize how important the decisions we make in life are, and how far reaching our decisions on how we treat others can be. The reality of all this imagining is we can’t change anything that has happened. There are no do-overs in this life.  What you decide to do especially to a child can and does change the trajectory of that entire child's life, forever.  It can’t be undone.  And when something bad happens that destroys their natural born self worth and self esteem, like abuse, you have permanently changed who that child is at their core. 

They will never know, and forever wonder, who they would have been had you not hurt them.  What would they have done differently? What partner would they have chosen if any? What career path would they have pursued? Most adult survivors of childhood sexual abuse ask themselves these questions for the rest of their lives.  it does not mean that they are not happy with their life now or their choices now.  But they will forever wonder what if they could have changed that one thing…because that would have changed everything. 

[blogkelleyb]

Summer of hate

It has been a beautiful summer weather wise.  Lots of sunshine, growing tomatoes and cucumbers out of pots, feeding the birds and squirrels in my yard.  It is the first summer without Max my 15 year old Yorkie.  We had to end his suffering in March and he took a huge part of my heart with me.  I didn’t think it was possible to grieve the loss of an animal like this.  Even now typing it out five months later, I choke back tears and feel this deep pain in my heart. He was such a special boy and we loved him as much as he loved us.  Even though logically I know it was the right thing to do for him, I wasn’t ready and probably never would be. I still question if we did it too soon, did we deny him life to love and be loved, or was it simply time to end his suffering and begin our suffering of life without him.  And yes I am well versed in loss. I have lost 5 close family members and a husband way before their time.  This hurt just as bad. 

What else was not beautiful about this summer was the goings on in the United States of America. Or should I say the “Divided States of America”  Trumps rhetoric has gotten so bad and so frequent that it is really insane. I feel like we are living back in Germany when Hitler was rising to power. We look back now and say how is it possible that he got as far as he did? How did no one stop him?  How did the good people of Germany let this man lead them on this horrendous evil pathway.  And now I am watching it happen in real time in the States.  Daily I am shocked not by what comes out of his evil mouth, but shocked that he continues to get away with it.  I am not a Bill Clinton fan but come on folks....you impeached him for a blowjob....really?  That was between him and his wife and I didn’t give a shit then and don’t give a shit now. A whole lot of money to impeach him for nothing.  This asshole has done a hundred fold worse and....crickets.

Well every news outlet reports on his crap (except Fox of course) but no one is actually “doing” anything to stop him.  Mueller passed the buck to Congress and Congress is more worried about pissing off Trumps base and losing the election instead of dealing with their law breaking, hate spewing President. If there was ever in the history of the United States a better case for Impeachment, I certainly have never heard of one. Anyone that thinks his hateful racist rhetoric isn’t directly responsible for the increase in White Supremacy and hate crimes really has to pop their head out of their ass and look at the statistics.  Wanda Sykes summed it up in her Netflix special...”This shits not normal”.  Or is it? Is America becoming the Nazi Germany of the 1930′s?  I am going to say...yes it is, absolutely it is.  And all it takes is for good people to do nothing and we will have a WWIII or a second Civil War.  The uprising is coming, it is written by the monster on Twitter every day.  White Nationalist (Trumps base) are heavily armed and clearly don't give a shit about their fellow man...unless they are white and republican of course.  Where will you be when this is all over and written in the history books?  I can’t watch all the time because it makes me so angry and so helpless to do anything to stop it. But I do watch at least twice daily and I do speak out against the hate and the bigotry.  I won’t allow bigots, racists, homophobic, or misogynists a place in my life.  My circle may be small but they are people worthy of respect.   

Every day it is more hate, more name-calling, more division, more abuse of immigrants, women, LGBTQ folks and mostly people of colour. Some days it just seems it will never end and this is the beginning of the end of democracy as we have known it.  I have no power to change it, but I will not turn a blind eye.  I want to be remembered as someone who spoke up and stood up for what was right.  I don’t want to wish my life away but November 2020 can’t come soon enough for me.   Summer is ending, but the hate isn’t and It is interesting to me that as we no longer have people alive to tell us what Nazi Germany was like, America is recreating it in all it’s glory.  God help America and the world if something doesn’t change...and soon. 

[blogkelleyb]

Losing my religion

Many times in my life I have turned to prayer in difficult times. I have lost too many members of my family to cancer.  I have prayed like a Southern Baptist Preacher during these times.  I have also been thankful to God when things didn’t go bad as I expected them to. Or a loved one returned home safe from a dangerous winter drive or something.  But the last two years with the goings on in the world I have begun to question the existence of God as I was brought up to believe.  I have always defended science. I am a Nurse and big believer in science and always have been.  I didn’t challenge myself when the two beliefs conflicted.   I do believe in the big bang theory and evolution and the fact that the world is billions of years old not thousands.  

I can’t believe what I was taught as a child anymore. That this God that is supposed to be the creator of all things on earth and all loving could be somewhere silently watching the goings on in the world today.  If there is then it would have to be a situation in which this God doesn’t control what happens on earth.  I question how people can take the bible as evidence of God existence. Because if we were created in God’s image, then we have really failed to live up to that haven’t we? 

I mean we can’t even get the simple things right. Take the 10 commandments for example. Right out of the gate “Thou shall not kill” Well there isn’t much we humans enjoy more than a good killing is there?  The wars, since time began have been such a waste of life on both sides.   We have little tolerance for those unlike ourselves.  We hoard wealth with full knowledge when we die we can’t take it with us.  But it will be for my children and grandchildren...really? Why not help people suffering NOW rather than silver spoon  your great grandkids dreams of greatness?  I guess that is how I came to this crossroads with my religion. Thinking about the haves and the have nots.  And where do I fit in? 

I think it is just all very random.  There are the billionaires and millionaires that can do whatever they want, whenever they want. Who have never gone hungry a day in their lives. Have never had to lay awake night after night worrying about how they were going to pay their rent that month.  I have struggled financially for most of my adult life.  I know exactly what it is like to not know how your going to pay your rent or buy food that week. I have been to the food bank more than once.  I had to stay in an abusive relationship for three years because I had no job and no where to go.   I have never known what it is like to just go out and buy new clothes because I need them. Or new shoes because I want them.  I am now in a situation where my basic needs are met but I certainly do not have any extra for new clothes or shoes. And yet I do not consider myself a “have not”.   How about the people in the third world countries that are literally  starving every single day of their lives? No food banks, no social assistance. Mothers that have to watch their babies die in front of their eyes and there is nothing they can do.  Those are the have nots. In comparison I am wealthy beyond measure.   

So are rich people more deserving of money, food, shelter etc than the poor?  Does God love them more? Why do so few have so much and so many have so little?  It has to be random, it is not God’s will.  But it is religion that has taught us that it is.  This sends the message that one person on this earth is more worthy than another and that simply isn’t so.  That mindset of the “chosen ones” make those born to poverty or struggling to make ends meet feel “less than”  Often it is people of colour and other minorities that are among the “have nots”.  So then the “haves” start to feel like they are more deserving or worked harder for what they have than the “have nots”. It simply isn’t true. I have known people that worked two jobs most of their lives and then did extra shifts on weekends in order to provide for their family.  Isn’t that hard work worthy of the most basic of life needs? Of course it is. Rich people don’t work harder nor are they smarter or better than anyone else. It is just randomness of the Universe.  The right place at the right time for the right job or buying the right business at the right time with the right people.  Or on the other side of the coin for the “have nots” a bad boss, a lost opportunity, a divorce, a death, an illness all can cause someone to struggle to survive. None of that makes either the “haves” or the “have nots” bad people or people unworthy of love and acceptance.  I think our religions have been separating us as human beings rather than bringing us together for the better of all and the planet we live on. The planet we are destroying more and more every day in the pursuit of bigger, better, faster, shinier, more more and more.  

I get angry when I see these wealthy white men on television starting with the so called President of United States filled with hate and bigotry and misogyny and greed. Above all greed.  He thinks Americans deserve it all and fuck the rest of the world. How did this happen? How did this man become the leader of one of the richest nations in the world?  How is it possible people in 2019 that are educated and intelligent and  listen to him speak and not want to vomit their breakfast.  I never much cared about politics before him, now I can shake with rage just listening to his hate filled speech. 

There can’t be a God up there watching over earth and all his children as my Grandma taught me. Because that would mean he was a cruel God. This notion that true followers will have all these wonderful things happen to them and non-believers won't just simply isn’t factual.  We all know people that have way more than what they have worked for or done good in the world to deserve. We all know people how have next to nothing but would give what they had to help another. No it’s got to be random. No child in Africa or Yemen deserves to starve and die. There is no lesson in that.   

I don’t know what I believe anymore about religion, I really don’t know.  Whether there is an afterlife or not. Is it something made up to give us hope perhaps? Maybe we should just try as hard as we can to do good while we are here. To try our best to not hate, to help others, to be kind, to share what we have and not hoard resources and just love one another.  We really don’t get a second chance waiting for us on the other side to do what we should.  Find joy in smaller things and stand up for those that need support. We are not all here to learn the same lessons. I am not exactly sure what lessons I am to learn, but I am trying.  Kindness, perhaps that will be the name of my new religion. 

[blogkelleyb]

I didn’t know...

I didn’t know that morning, when we were having breakfast together that it would be our last time. I would have eaten slower to spend more time beside you. Our human always said I eat too fast.  I wish I ate slower.   I didn’t know why our human Mom was so sad for the days before you left.  I tried to cheer her up by binging my new ball for her to throw. But she didn’t want to play.  She cried a lot...and I didn’t know why. 

I didn’t know why our smaller human Meghan took you out for a nice long walk the day before.  I didn’t get to go and i was sad.  But I didn’t whine, it seemed important that she just go with you.   I stayed home with Mom but she kept going to the window to watch you on the walk.  She had just given you a bath and you came home with wet dirty feet but they didn’t seem to mind. They tucked you in your bed nice and warm to dry out. 

I didn't know why you stopped playing with the toys with me. Every once in a while Mom could get you to play with one for a few seconds but then you went back to bed.  I thought you didn’t like the toys, I didn't know you were sick. 

I didn’t know why Mom put you in your hoodie and wrapped you in a blanket to take you outside.  She was carrying you for some reason. Going out with no harness or leash? Where were you going?  I didn’t know when she brought you over to me and said “Say goodbye to your brother” that she meant forever.  

I didn't know where you went, only that they came home without you. They cried a lot. Mom took your special blanket out of your bed and put another one in. She took your food dish away so it was just mine there.  I didn’t know at supper time what to do. I always eat on the left side and now the food was on the right. The food on the right is your food Max, I am not supposed to eat your food, even when you don’t. Mom said “don’t eat Max’s food”  And most of the time I listened, even if you didn’t eat it all day. For the times I snuck some of your food, I’m sorry.  I didn’t know why you didn’t eat it, I just thought you weren’t hungry.  

I don’t know where you went but wherever that is I hope you’re not sick anymore.   I hope you have a nice bed and blanket like here at home. And toys you like to play with.  And at least one human that loves you as much as Mom and Meghan do. And maybe a little sister like me that loves you too. 

I don’t know how to be the “best good boi” at home yet.  That was your job and I guess I have to try to be the “best good girl” now.  It is hard to figure out how this works without you. I didn’t know how much I would miss you and your backwards sneezes.   You have been here with me since the day they brought me home. You didn’t like me much at first but we became really good friends didn’t we? So many walks together in the big park.  So much fun in our own yard when we moved here 2 years ago.   I didn’t know that friends could leave one day and never come back....I didn’t know.