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So freaking easy for others who don’t have to make that decision to say, take a cab, drop you off and pick you up, or can’t you hire someone to do this or that?  Do YOU want strangers who you’re not comfortable with doing stuff for you when you’re helpless and dealing with chemo and cancer? Neither do I.  No excuses…I’m over it and tired of hearing it.  I can no longer try to be supportive and there for others when no one is there for me…NO MORE EXCUSES.  I’m done, over it…I will die alone someday.  I know that…it sucks but its the truth.  I’m moving as soon as I can get away from this place.  I need peace, I need healing and I need real friends.  Cancer takes EVERYTHING from you, no matter what that stupid poem says that goes around.  Don’t talk me down or out of my feelings.  Its my fifth round with cancer.  At some point it will spread and it will not be treated.  Its the way it is…crap, crap, crap.  No looking down on me for what I’m saying and what I’m saying…you all have your own issues.  I just don’t hide mine.  If this alienates a few people, so be it.  I’m done.

 

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Hurricanes and Cancer

I have a couple of friends living in Florida right now.  I’m concerned for their safety and health during a very high stress event.  Hurricane Irma is moving their direction, but could move another direction and avoid Florida.  Highly unlikely.  But, I have spoken to both of them.  They’re waiting and watching and fearing the worst.  Both struggle financially and are trying to hang on to what they’ve got without losing too much.  Both will have to probably stay in shelters locally if anything happens.  Their vehicles are in dire shape and would not make it very far.  These are the people who will suffer the most.  Hurricane Harvey already destroyed much of Texas coast and parts of Louisiana.  America is doing what it can to help those in TX but if Florida is hit, it will be the worst natural disaster double whammy ever.  Hoarders who say “I’m saving to give to someone in need,” well…now is your time.  Just don’t give junk.  No one deserves junk, trash or broken stuff.  Not even the poor and desolate.  God encourages us to give our best and that’s what we need to do.

Now, speaking of hurricanes, I’m getting ready to face my own chemo ‘hurricane’ of sorts.  I know its inevitable.  I know I have to do it.  I don’t want to.  I know I’ll die if I don’t.  I know I need to swallow that pill, get that infusion, deal with the nasty side effects.  I’ve been there and done that.  Don’t want to put that t-shirt back on.  But, I will.  I will try some natural, alternative things to compliment the poison I’m putting in my body.  I am not into crazy, off the wall stuff.  But I am into trying to aim for some healthy eating depending on my ability to eat at all.  I’ll try some aromatherapy.  I’ll try some self massage.  I’ll try healthy smoothies with protein powder in them.  Heck, I’ll even try to exercise a bit.  Gentle exercise…no aerobics here.  Did I run when I had two legs? No.  No running blade for me.  Just a walk around the park slowly.

The chemo ‘hurricane’ is like this…I have no idea how I will react to the drugs going into my body.  I have no idea if it will destroy the cancer or destroy my body more than it is already.  I have no idea if I’ll throw up a lot or just a bit of nausea.  Fevers? Chills? Fatigue?  Any of it could hit at any time.  One minute, fine.  Next, well…you get the picture.

I also have to get Neulasta shots the day after chemo treatment.  It is to increase white blood cell counts to fight off infection.  If too low, I can’t do treatment.  I’ve had them before.  They make you hurt all over. So the nurse told me to take Claritin or Benadryl to help.  Something in the body goes haywire and these drugs help in some odd way.

This week, I’m enjoying a few of my favorite foods and drinks within reason.  I feel like that person on death row.  What would you like to eat for your last  meal? Steak? Chicken? Pizza?

Here’s what I hope from those who know me.  That you will see me fighting and getting back up no matter how many times I get knocked down or stay down for a bit.  I will give it all I’ve got to slowly crawl to the ropes and pull myself back up.  Holding onto the ropes.  But Cancer will be way bloodier than me when I knock it down for the last count.  I’ll look worse for wear but I’ll be smiling a crooked grin underneath all that griminess.

Seven more days.

Kim’s Kicking Synovial Sarcoma Cancer

If you click on the link above you should be able to read the document my friend made and sent to me.  You can volunteer or help in some way let her or I know.

Only a few more days of freedom before the dreaded chemo.  My seroma in my left groin isn’t going down yet.  Hoping I don’t have to have surgery to clean it up.  Its like a fluid-like cyst developed after surgery and it has to be drained or removed.  Trying antibiotics but it doesn’t seem to be helping.  I’m tired of taking Antibiotics.  Third time this summer I’ve been on them for whatever health reason.

Glad the sun is shining today.  It will be a nice day to go outside and enjoy some nice temps.  It is starting to feel fall like outside.  I like autumn and its display of color.

I get a port in this Friday and still looking for a ride.  Rides always seem to be the hardest part, especially when people just don’t understand why a chemo/cancer patient should have a friend drive them and be with them, not just have a public service drop them off.  Do you want to be alone during a tough situation?  I’m always alone because I’m single so no, I don’t want to do this alone.  And the side effects can be bad so driving while feeling like I might throw up or I’m exhausted and feeling like I’m beat up isn’t conducive to my health.  I’ve been through this a few times.  Its so much better when I have friends to help.

I am trying to prepare…house is mostly cleaned.  I’ll have to do grocery shopping a bit this week and get a few things.  Money is tight so I’m trying to do it on a budget and still get what I need.  I’m allowed to take supplements within reason.  I’ve been researching about supplements and essential oils, etc to help relieve symptoms of chemo.

Tyring to eat healthy, watch my sugars and deal with nasty taste buds and lack of appetite will be a delicate balance.  But, I want to be as healthy as I can within reason.  Being Diabetic doesn’t help.  But I’ve learned a few tricks before when I went through this.  One doctor said, you throw up, try eating again…at least a bit will stick with you and help. Okay.

Meanwhile, Let’s all enjoy eating and breathing and living this week!

Chemo and Side Effects

The list of side effects for the new chemo drug and antibody drug read like that list at the end of one of those medicine commercials.  Nausea, Fatigue, muscle and bone pain, low platelet counts, low white blood cells, fever or neutropenic fever, sores in the mouth, hair loss, vomiting, infection, anemia, constipation, diarrhea, decreased appetite, abdominal pain.

Add to that: Infusion reaction, decreased heart function, heart failure. Flushing, shortness of breath, difficulty breathing, fever, chills, low blood pressure, shock.

Which is why I am going to be taking heart meds while doing this chemo.  And, monitoring my heart in between treatments.

Add to that pre-existing conditions.  Long-term side effects from previous chemo and radiation treatments.  My list of medicines is already growing.  But I am checking out supplements I can take safely to help build up my immune system.  But, I cannot take too much of anything or it will react with the chemo treatments.  I am researching all the possible ways to eat healthy even if nothing will sound or taste good.   Within reason.  No off-the-wall stuff.  No suggestions from crazy people who’ve never tried these treatments themselves.  Just eat this one thing every meal for a week and, poof, your cancer is gone.

The challenge will be that I’m a diabetic and have to really watch my sugars, yet get nutrients in.  Smoothies will help since mouth sores are normal with this stuff.  Soft foods, nothing spicy.  And, if I do have a craving, I’ve learned to give in to it because at least I’m eating.  Lack of appetite is an issue, plus all those favorites like chocolate and soda might not be appealing this time around either.  Smells…cooking or otherwise, can cause me to hurl.

This is going to eat up my budget.  There are things they will want me to get or buy that are expensive.  I will have to watch tightly what I buy.  And, try not to shop online while home in bed…lol!  I hope to journal a lot so I can keep working on my future memoir.  Maybe even a children’s book will come out of me, who knows.

I’ll work on finding the humor in all this, plus, the realness of it too.  Being by myself at home going through this alone through an illness sucks.  I know people are praying for me, but just remember.  I won’t feel bad every day.  Some days a visit or a trip to get food or stuff I need will be very nice.  Depression worsens when going through chemo.

Anyone who knows me and I know them who wants to help or volunteer, I’ve started a webpage on this site that has a calendar on it.  I put tasks and appts on it and people can volunteer, etc.  It is my.lotsahelpinghands.com/community/kimousley.  Ask to be invited and I’ll add you.  Unless, you know, you’re a stalker, or family.

On a lighter note…I’m a step closer to having a new socket made!  My stump will be so excited to have a socket that fits and is adjustable to swelling and shrinking issues.

In the meantime, I’m trying to get some cleaning done.  Dreading tackling the oven, but once its done, I’ll be happy.  Little things.  My love languages are acts of service and quality time.  I’m also really an introvert.  No really!  When I’ve been around people long enough, I just want to go home and relax quietly usually.  A beach setting would be awesome.  A girl can dream.

Ding! Ding! Round 5.  Gloves on.  Ready to Box the crap out of Cancer.  There will be tears.  There will be wounds.  Heck, maybe even some blood or knockouts.  But its my battle and I have to fight for life.

In walks Dr. Wurtz and his resident student.  He has a concerned look on his face.  I plastered a smile on mine.  I knew what he was going to say.  I could tell this was not the news he wanted to give.  I think he was a bit taken back by my attitude.  I wasn’t about to cry or be sad or depressed. Nope…a great boxer has to pretend she’s ok.  Mixed Martial Arts…that’s me.  He slid himself onto the stool with wheels, in front of me.  “This was a weird case.” he said turning and shaking his head. ” It didn’t show much activity on the pet scan but when we went in we discovered it was cancer.”  He went on to say he was glad I was proactive and caught it early on.  Clear Margins, he said.  I quickly looked a bit excited and said I wanted to show him the new socket I’m going to get for my prosthetic leg.  He looked a bit bewildered, like he thought I was going to have a negative reaction to what he just spilled out.  Diversion tactic.  He looked, amused a bit.  Then looked at me and said, “amazing technology.”  He smiled and shook my hand and thanked me for coming in.  I’d already had my stitches taken out by the resident earlier and he was funny and entertaining.  Off to fight another round at the Cancer wing side of hospital.

Oh, did I mention how LATE I was to my first appointment of the day?  The traffic was horrendous on I69 South from Fishers all the way downtown Indianapolis.  Road Construction.  Wrecks.  I was watching the clock out the side of my right eye, trying to stay calm.  I might have said a few words that were close enough to swearing without really saying them.  At least, not out loud.  I get in front of hospital and pull into the valet parking lane.  Sat there for 20 minutes…lack of help or something insane kept them from moving the cars already in the two lanes waiting to be moved.  I called the office twice.  Please don’t cancel my appt.  I am just in front of hospital waiting in line.  Do you want me to send you a picture from my phone? Finally made it, got right in, but then waited a bit for the first appointment.

My other appointment, with Dr. Rushing, my oncologist, was clear on the other side of the building and I was already late.  My only hope was that he was his usual self and was running late.  Huffing and Puffing like a an elephant charging through the jungle, I got there.  I registered.  I did labs…they had to stick me THREE TIMES before getting a working vein.  HATE NEEDLES.  Got to a room and sat.  And sat.  Tried to crochet, too nervous and anxious by this point.  The news I would receive about future treatment was weighing heavily in my head.  I was playing out various scenarios.  I here him right outside the door.  Quickly, I shot up straight and put on a smile.  It was the resident working with him that day.  We talked about the paperwork I just filled out…you know the one cancer patients fill out with silly questions about side effects or symptoms.  I love the questions “Are you hearing anything that isn’t there?” “Are you seeing anything that isn’t there?”  It depends.  Does my muse count?

He leaves, a few minutes, that seemed like hours, the actual doctor comes in, followed by the resident.  He starts talking about the treatment plan by picking up his dry erase marker and drawing little blobs on the dry erase board.  Here’s the timeline of your cancer, this is what we’ve tried.  Unfortunately, by the time they took out the tumor it had reaching a size that meant cells might have already spread to other areas.  Oh…like little swimmers.  I wonder if they were wearing goggles and diving suits?  Ok, funny, not funny.

So, the drugs we are going to give you seems to work in many trials and studies….o-kay.  I glance at the resident…we already have developed a special bond…we shrug and have that look that says…yup, we just talked about how the doctor shares everything like he’s teaching a medical class.  Ha!  Ahem.  Back to all seriousness.

The one drug is a chemo, the other is some new antibodies type thing that amazes…and confuses me entirely.  Then, because this could damage your heart, we have to give you a special medicine.  But, because there’s a shortage nationwide, we have to see if we can even get it….my comment, “As long as Medicare covers it, I’m good.” A couple of times I started to say something and he got a bit irritated and would say, just a minute, let me share this with you.  Honestly, I already read about the drugs I’m going to take like last week.  I research everything.  This one is called “red devil” or a reason.  Well, two reasons.

One, its red.  Like blood.  I’ve read some people can’t handle seeing it.  Two, well…it makes you really, really sick.  Like, you wished you’d died instead of go through this sick.  And…I guess I am going to suck it up and do it.  I kind of like living.  Its this thing I have that I am really starting to start my life anew after a seven year battle.

He plans to have me have chemo here in Anderson where I live instead of driving that awful traffic.  I’ll be seeing Dr. Praveen Ranganath, a doctor that did his residency at the same hospital Dr. Rushing is at now…says he highly recommends him.

He leaves, his nurse comes in a short time later with printouts all about the drugs I’ll be taking and their side effects.  I take all my paperwork, which has now killed a few branches on a tree, with me.  I wait to be called to check out.  Stomach starts growling…gets louder.  Um, sorry dude.  It was my stomach, not me!

I love Miss Char.  She called my name to check out…I said, you called me just so you could spend time with me.  How precious!  We laughed.  We’ve been together since the start.  I have grown fond of her.  We talk about our kids, life, wait while she schedules my ct scan and appointment for 3 months from now.  Two days after my birthday.  Oh boy!  I just hope I can eat cake and ice cream by then.  We chat about me not looking forward to losing my hair.  I have longer hair now…I worked hard for this mass of tangled, wavy mess to reach a decent length!  Off I go.  Time to pay the $10 valet fee that could have been lunch instead.  It went from $5 to $10 this summer.  As if we’re not already bled dry from illness, lets just take another $5 and tack it on.  Ok.  I digress.

By now, you’re probably thinking….isn’t she done talking yet?  Nope…nada.  I get through the crazy afternoon traffic.  I make it back on I69.  Just past Exit 210 I witnessed a nasty little wreck.  Well one vehicle, a tow truck, wasn’t little.  I was processing and trying to stay focused when out of nowhere I see both the tow truck, in the left lane, and a car, in the right lane, clip each other.  This causes the tow truck to spin out of control.  He flips…yes FLIPS…over the guard rail.  I suddenly stop and hear myself gasp.  Hands over my mouth.  My anxiety level reached new heights.  I glance in my rearview mirror…cars are backing up.  I pull out my phone and take some pictures.  At the same time the wreck took place, the car in front of me pulled over right at the present construction site…this guy grabs his bright yellow vest, hops out and runs and jumps over the guard rail.  Seconds later, I actually see the trucker, on his cell, standing by yellow vest guy.

Whew!  After waiting for them to clean the debris off the road, we were waved through.  And, this is why I dislike driving the interstate to get anywhere.  But my stomach reminded me I’m hungry.  I stopped, ate and moved on down the road.

Murphy’s Law.  If it is going to happen, It will happen to me.  I got home, laid down, took a nap and woke up in so much pain from all the tension and anxiety I had earlier.  It was if I really was truly ran over by a MACK truck.  Or a garbage truck.  Same difference.

I will see Dr. Ranganath next Wednesday and find out how many treatments, days, details, etc.  Seven years.  Lost my leg 7 years ago this month.  THIS MONTH.  I had two tumors in the foot and ankle area.  Did nasty chemo inpatient.  Then another tumor showed up months later in my left groin.  Then another one in my stump…chemotherapy.  Then the chemo pill for 2 years.  Then another tumor in same left groin area…radiation twice a day for several weeks.  No hair loss though!  Now another tumor shows up this summer in same spot, left groin.  It grew in size from time of pet scan to surgery.  Like, it doubled.  I knew…I just knew…I always know.

I will lose my hair again.  Maybe I should get a temporary tattoo or henna tattoo on my naked skull.  Any takers?  There will be nausea, vomiting, diarrhea, constipation…depending on what they give me…and a few other weird symptoms I won’t bore you with right now.

Boxing Gloves…yeah…I need to get some…virtual, invisible ones for now.  I’m preparing my routine, apartment, and life for what’s next.  Been thee, done that…thought I got rid of that piece of clothing.  But, time to make some hats, look for cute hats that are comfortable.  Stock up on yarn and books and magazines.  Who am I kidding?  I’ll probably sleep as much as I can at first.  Who wants to help me clean house? Do Laundry? Cook?  I’m thinking microwavable, paper plates, plastic spoons.  Nobody has time for all of that.

Ding, Ding!  Let’s go!

continuing story as a I go.

 

https://www.gofundme.com/help-kim-please-read-this

Above is the link to the Go Fund Me Page my friend Lizzie started!

 

I am getting ready to deal with another round of cancer again and will know in July what is going to take place. Being independent and being able to drive myself around to appts and just to the store or to get out will greatly help.  Every penny, any amount no matter the size will be helpful to me and also so I can help others who struggle getting around here.  Transportation in town is unreliable and being disabled as a lower left leg amputee, driving a good car without too much stress would be a huge blessing! Please share and please know how much it is very much appreciated.  I have struggled with cancer off and on for 7 years but still fight to stay strong and have a better life for myself someday.  Maybe I have encouraged you in some way.  I hope.  Just stay strong and fight and keep a smile going on that face! Thank you for all the blessings and prayers!  🙂 Kim Ousley

 

 

One thing I have learned…sometimes its better to wait.  We don’t need to always rush through decision making or be impatient for test results.  Sometimes God works miracles in the waiting.  Sometimes He wants us to wait so we don’t rush into something that wasn’t meant for us in the first place.  I’m not always patient and I know it.  However, when I went through cancer the first time and had to be in a wheel chair for six months, I learned how to either get out of my own way or find a solution or another way.

Right now, I know the waiting is hard for me.  But I also know what to kind of expect.  Is the cancer back? Probably.  Has it spread? I hope not.  One lump in the same place the last two were located except chemo and radiation might not have worked.  Maybe its just a swollen gland or something.  Maybe its the cancer.  I hope not.  Right now, I already know that they will schedule surgery at some point later in July or early August to remove it to find out for sure.  Not looking forward to more surgery.  Nor any type of chemo or radiation.  But if its not spread maybe I’ll make it through this in a calmer and more peaceful manner.  But there will be days I might just throw a little silent fit and cry and get it all out and then breathe.  I trust in the Lord with all my might and faith.  He got me this far.  He knows my future.  I shall have to trust Him and believe He will get me through whatever happens.