The Journey to Who I Am Today, on My Way to Tomorrow’s Me

My first dance with cancer was in 2003, technically I found in in March/April 2002.  I had started a new job, making $7.00 an hour, so when I had the chance to purchase health insurance, I turned it down.  I was working 33 hours a week at $7 an hour, $231 a week gross.  So taking $30 a week out of the net wasn’t going to work for me.  Besides, I was healthy.  Yeah, I found the lump a couple weeks later.

I had to wait until December to elect to get coverage.  So I waited, and felt.  At first the lump kind of felt like the hamstring was becoming shorter, and I needed to stretch it out.  So I did.  Every opportunity I got I was stretching and palming the floor.  The knot grew bigger and bigger.  And to myself I started to refer to it as my “Alien Baby” or my growing pineapple.  Come on you get it don’t you?  I was overweight, had (still have but I could care less cellulite) Cottage cheese thighs.  You know pineapple and cottage cheese go well together.  You get it?  No?  Oh well, stick around there is much more humor where that came from.

December came around and I got the health insurance.  Man that took a bite of my little pay check.  The coverage kicked in January 1, you think I would have made a bee line for a doctor.  Nope.  Wanted to be sure I had coverage and I had that little insurance card in my hand, that and I have an aversion to doctors and hospitals.  Not to mention needles.

It had grown.  From the size of an egg to the size of a large pineapple.  And it was becoming very noticeable through my pants.  The left leg was getting larger, and the pant leg was getting tighter.  I knew I wasn’t going to be able to hide it forever. 

The store manager noticed it and told me if I didn’t get it looked at then I didn’t need to come to work.  Well, the hell with that.  I need to come to work.  I need the paycheck.  It helps pay the bills and cover expenses for the shelter!  (Not only did I work a joby job, but I ran a nonprofit ferret shelter and it had grown way beyond what I had ever expected, but that is another story for another day.  Yes, I said ferrets, and mink, and iguanas and snakes, and fish, just not cats and dogs.  All the unusual animals that vets that are knowledgeable are hard to find.  But like I said, that is a story for another day.

Since the insurance kicked in I decided to go to one of those Urgent Care Centers the next morning.  I worked from 1 PM to 10 PM, so I would be able to make it to work.  I filled out the paper work, and for reason for visit, I put large growth back of the left leg.  So I put the gown on, and the doctor came in, she asks me why I had come in (I filled out the paper work, she was reading it what can’t she understand about large growth?), I laughed, stood up turned and showed her.

It is never a good thing to hear a doctor take that shocked breath in.  Before I walked out I had an appointment with an Orthopedic Surgeon, an Oncologist, and a Radiation Oncologist.  CT scan, MRI, biopsies, a plan was made.  Chemo one week, followed by radiation for two week for a total of three cycles, then surgery.  Depending on the margins, would decide if I had to do another cycle of chemo.

The Cleveland Clinic is a really good hospital, but it is hurry up and wait.  They are HUGE!  Never mind the Ortho surgeon was on one campus, and the Radiation Oncologist and Oncologist were on the opposite end in the “Cancer Center”. 

I remember the first day I walked through the Cleveland Clinic, I had a biopsy done by the Ortho doctor, and I walked across campus through the pedestrian bridges to the Cancer Center.  I stopped looked at the sign before I walked though it and no it wasn’t one of those “OMG I HAVE CANCER” moments.  I shrugged looked at my ex and said, huh, I guess it is official, I’m a cancer patient.  Then I laughed. 

I actually had the Oncologist Fellow ask me if I was in denial; that I could die did I understand that.  I told him told him no I am not in denial, and I understand I could die.  I just understood the Circle of Life.  Working in an animal shelter pretty much gave me an up close education of life, sickness and death.  I told him I understood the cycle and was fine with my mortality.  We had some really great conversations.  Really intense philosophical conversations.  I really do miss those.

The results of the biopsy was a round cell carcinoma.  Normally it occurs in children, and occur on a regular basis in animals.  I should state here, they called a sarcoma, but I switch between the two words.  To me they are the same but in reality they are very different.  So I will hence for call it round cell sarcoma.  Oh, don’t I sound all that and a bag of chips!  The doctor said I was one in 4000 in the world that got it, but if you research, you find the number varies, from 4,000 to 10,000 in the world or in the US.

You’ll love this.  It was one of my better days after chemo and my very lovely friend, Michelle, was helping with the animals, and she asked very seriously, how I got a sarcoma. 

Now, let me stop for a moment and explain, sarcomas are very common in ferrets.  Get where I am going?  So with a very serious look on my face I said I caught it from the ferrets.  I was one of the rare people who could catch it from animals.

Her face went white, she started to stare, and didn’t know what to say.  She believed me!!  I couldn’t keep a straight face any longer and laughed so hard.  I explained to her you cannot catch cancer.  It is just something in the DNA that hick ups and sends the cells into a growing frenzy.  And since the cells can get into the blood, it can spread or Metastatic.  It was a very simpler explanation of cancer.  And I truly do believe that some of us lucky humans have the genetic makeup that just seems to give those crazy cells the green light to make our lives as inconvenient as possible.

The Fellow used to say, I was his favorite because I was so grounded and I laughed.  I didn’t understand what made me so different.  Doesn’t everyone?  How can you not laugh and say fuck it, I’m fighting.  Even on the shitty days, you have to laugh and keep going.  But from what I have been told by many nurses and hospital employees, not everyone has the same outlook.  They are afraid.  I just don’t understand what there is to be afraid of.  No I don’t want to die.  My life was far from perfect then, and it isn’t perfect now (hell of a lot better though!)  I want to be around for a long time.  The only thing that makes me even get a bit sad is by dying, I leave my kids.  Sure they are adults, but that makes no difference to me, I haven’t been the best mom in the world, let’s just say I had lots of issues and leave it at that.  None of which were drugs, thank you very much.

Our plan of attack was chemo for a week, then two weeks of radiation, for a total of three cycles.  Two or three weeks off so I could recover and heal, then surgery to remove the tumor.  At the time of surgery, it would be decided if the leg could be saved.  I wouldn’t know until I woke up.  I looked at it this way, one leg or two, the animals still needed me, and so did my children ever though they were grown and on their own.

I did my chemo in the hospital.  The chemo regimen was called MAID (mesna, adriamycin, ifosfamide, and dacarbazine.  A very aggressive chemo treatment.  So I was to check into the hospital while being treated over a week then go home.

The week went by in the hospital, and I was handling it fine.  No nausea, nothing, I was eating just fine, not getting sick.  I remember thinking, so much for loss of appetite and getting rid of some of this excess weight. 

I remember getting out of the hospital thinking this is going to be a cake walk.  Yeah, right, I was at the grocery store after getting out of the hospital.  My ex looks at me as we are shopping.  He asks, “You ok?”  Me, “I got to get out of here fast”.  We hurry to the checkout, get to the car, and low and behold, I am tossing my cookies next to the car.  It went downhill from there. 

Cake walk my ass. I spent the week throwing up.  By the time day 10 came around, my immune system crashed, and ended up in the hospital.  The only good thing about having a port (well not the only good thing) is they can draw blood through it. 

A week of chemo, by the fifth day after the chemo cycle ended I ended up in the hospital.  Blood transfusions.  Strong antibiotics.  I found out I was allergic to Vancomyicin.  Red man’s disease.  I turn into a giant itchy strawberry.   Few days in the hospital, I get out.  Feel almost normal.  Then the two week break was up and back into the chemo and all over again.

The radiation burn was nasty.  It got really read, and oozy.  No infection thankfully.  It burned.  One day I was desperate for some relief from the constant burning sensation.  So in my wisdom (if that is what it is called) I thought, “Huh, a sun burn in nothing but a radiation burn, and Solorcane does sooth sun burns, so I’m getting some and even if all I get is 10 minutes of relief, it will be worth it. 

WHAT A BIG MISTAKE!!  That shit BURNED!!!  Even after washing it off it still burned because some of it absorbed into the skin.  Never again have I ever used Solorcane on a radiation burn.

 Since January 2003, I have dreaded the New Year.  January is when I am diagnosed, with biopsies.  The second dance with cancer in 2011, everything seemed to happen a week or so later.  Biopsy in 2003 January 30^th, 2011 January 18. 2003 chemo started on February 24, 2011 February 14.  Get the idea?  Turned green on St. Patrick’s Day both years, but not from drinking!  Go figure.

Made it through the chemo and radiation, finally time for surgery.  They removed my left hamstring, the doctor said once they got the tumor off it expanded, got much bigger.  It was removed on Friday.  The following Tuesday, they did a free flap with the right latissimus muscle.  Basically they took the right lat and covered the bone and nerve endings on the left leg.  Doesn’t function, but protects.

While I was in the recovery room they were taking blood, a lot, and not from the port either. I wasn’t doing very well.  They started having to take it out of my foot, and I got to the point I didn’t care.  Turns out I was bleeding into my chest.  Next thing I know I am in the surgery room again, with the doctor talking to me.  We have to do emergency surgery, you are bleeding in your chest, and you are bleeding out do you understand?  I shake my head yes.  I really didn’t care.

Yes, I died on the table and they resuscitated me. 

I woke up in Intensive Care, on my stomach, with a feeding tube down my nose, which made me feel crappy.  I actually hate things around my nose, so my ex made the doctor pull it out.  Though the doctor that pulled it out wasn’t happy about it.  He yanked it out.  Saying she’d better eat. 

I had to spend the week on my stomach, to the muscle could knit and blood flow establish.  I couldn’t get out of bed.  Yes I ate while I was on my stomach, it was horrid, and my neck and shoulders started locking up. 

After a week, I went in for the first of several skin grafts.  I woke up on my back and it was wonderful.   Then the rehab started.  They actually wanted to send me to a rehab hospital. I said no.  Home.  I couldn’t walk.  I was in a wheelchair when I got out of the hospital.  They told me I would need a walker or cane.  Yeah right.

My rehab?  The bathroom was on the second floor, so since my goal was to use a toilet that flushes, like an adult.  That bedpan crap was getting really old.  (I made a joke there did you get it?)  

I went home, and when no one was home, I’d get into the wheel chair, go over to the stairs, and get myself out of the chair and try to maneuver up a stair or two. It was difficult.  But I got it done.    At first going up and down the stairs was on my butt, then I got strong enough to stand and had to start it over again.  Hanging on the railing and up one or two stairs a day, increasing when I could. 

I was told I may never really walk again, and if I did I would need a walker, or at the very least a cane.  I got out around June 9^th and by June 21^st I was up on crutches.  By the end of July I was walking on my own.  Stiffly, but I was doing it.  It took a few years to get to the point I could wear heels. 

Oh yeah, I had a total of 8 or 9 skin grafts to cover the muscle, they would literally skin me, and use it on the wound.  For some reason portions kept dying.  Thankfully by Halloween they were done.

I was overweight when the cancer kicked in.  I was losing and wanted to shed another 40 pounds.  Well I shed that and then some.  I went down to 100.  So I started working on gaining weight.  Problem with that is since I am the individual that eats their emotions, yeah, by 2008 I was tipping the scales at 250.

Moving to Virginia in 2008 started me on the road to weight loss again.  I made better choices, didn’t deny myself anything.  I wanted McDonald’s, I’d get a kid’s cheeseburger meal rather than the quarter pounder meal.  Once a week I allowed that kids of treat.  I ate about every two hours.  Tomatoes, peppers, carrots, yogurt.  Started walking then working out.

By 2011 I was down to 150 pounds.  I liked it.  I had curves, and looked so much better. 

Well, I had started getting sharp pains in the lower left abdomen, I made an appointment with an urologist, and the tumor was big enough for him to feel.  Ok, New Oncologist, Radiation oncologist, and surgeon.  Ct scan, wrapped around the tube that the kidney.  Sigh.  The CT scan also showed a tumor in the upper portion of the right lung.

Welcome to Virginia, and Mary Washington Hospital, which is a great hospital.

We decided to go with the MAID chemo, one week chemo, two weeks radiation, just like before.  Did better with the nausea, the drugs for that have improved like crazy.  But yes, I spent many a day in the hospital because the immune system crashes.   Stopped producing red blood, so they give me blood transfusions.  Had reactions to them.  So I don’t get blood unless they pretreat me with Benadryl. 

The first surgery was the lung, I was hoping it was a small little one they could do a minimal invasion surgery, but NOOOO. It has to be taking up 2/3 of the right lung.  Not to mention the damn thing was encapsulating the vena cava.

So the first surgery was having my chest cracked open, ribs separated, and the upper 2/3 of the lung removed.  Oh yeah, and the vena cava had to be rebuilt because the tumor was wrapped around it and it just fell apart.  Hurt like a bitch to sit up the first time.  But I survived and got on the road to healing. 

Four weeks later it is time to take the tumor out of the abdomen. 

Dr. Flynn decided that it would be a good idea to get a colposcopy and endoscopy done right before the surgery, turns out there was a tumor in the intestine too.  So a length of intestine came out with the tumor.  Huh, I should have warned you about the picture.  Sorry.

 

My son was there the first time they got me out of bed after abdominal surgery.  He said I had

 

cartoon eyes, they seem to pop out of my head.  This hurt worse than the cracking the chest open.  Funny how you put things into perspective.  If it wasn’t worse than a migraine, I’d deal with it and move on, if it is less than the labor I had with my son, couple of aspirin and keep going.  (That was not fun, but so worth the pain) now nothing compares to the pain of the abdominal surgery. 

Oh, did I tell you that the port stopped working?  Yeah. They had to replace it because a tumor decided to pop up on the right pectoral muscle.  The size of a golf ball.  So when the golf ball sized tumor came out, the margins weren’t good, so they took out the port and put in a new one.  And chemo with radiation was on the table again.

That was August.  I was sitting in a hospital bed talking to my daughter when the “earthquake” hit.

Radiation and chemo.  Last day of chemo was Dec. 30 2011.

2012 was just follow up appointments and CT scans.  I don’t ever think of myself as cancer free, just waiting until the next dance.

January 2012, I wake up in the middle of the night in pain.  Like I can’t stand it pain, I am not one to wimp out because of pain.  Ask the nurses.  So I ask my roommate to take me to the ER and let the boss know where I am.

They do a CT scan.  The ER doctor comes in with a horrified look on his face.  He flops down in the chair, I already knew what he was going to say.  I was laughing.  Hell, it is just another inconvenience.

Unfortunately Dr. Flynn is now at Cancer Center of America, so I was introduced to Dr. King. 

I start chemo, and guess what?? IT doesn’t work.  You can inject into it, but cannot draw from it.  Sigh. Chemo starts, and three days into it, my system crashes, and hard.

Blood transfusions, reaction, they discovered small micro tears in the intestine.  There is ecoli in my blood, no I didn’t have it.  The tumor was shrinking and tearing.  Oh yeah, it was in the upper area of the abdomen this time.

Ok, I get better, chemo is stopped just because of how bad I crashed.  Surgery is the only option on the table right now.  As soon as I am healthy enough, surgery.  Dr. King wants an endoscopy done to see what is involved.  It could just be on the intestine and it would be a simple case of removing it.

But if the duodenum is involved, gall balder, pancreas, it will be a Whipple.  Reroute the stomach, take out the gallbladder, 40% of the pancreases.  Guess who won the lottery?  Yep, it was me.  A Whipple!! March 13, 2012.  My abdomen gets opened a second time!!

Here is a kicker for you. I told both Doctor King and Doctor Flynn, while you are cutting out stuff, cut some of that excess skin I have from all the weight I lost.  It makes buying clothes a pain.

I now nausea issues because I can’t process food like a normal person, same food two different times once I am fine next I’m looking for the Zofran.

I’m down to 120 and I have to work at staying at it.  So I eat.  Healthy stuff, and that is probably why I can’t seem to gain anything much.  I go from 120 to 124 within a week.  Skipping meals isn’t a good thing for me.  I tend to get a bit cranky.

I discovered the tumor in my right leg near Christmas.  Wasn’t going to be ruining my kids Christmas.  And since I had booked and paid for a vacation to Bali for January, I wasn’t going to do anything until after I got back.  Besides, it may be slightly bigger than a quarter.

February 17^th a CT scan of the abdomen and chest, those damn tumors turn up everywhere in me and it is better to be safe than sorry.  February 18^th ultra sound and biopsy on the leg.  Turns out the tumor is bigger than I thought.  It felt flat like a quarter.  Nope, bigger than a golf ball, going into the muscle.

Right now I am waiting for the doctor to call and let me know what is what.  I want to do things.  Living Social has a zip line deal in West VA I want to do, but if I’m in chemo or recovering from surgery I can’t do it.  And there are specific dates for it.  I want to take scuba lessons thanks to Bali.  I think I can beat the fear of deep water!!  But again, if I’m doing chemo I can’t.  Never mind the surgery aspect.

I want to let them know at work what is up, time tables and what may happen.  Well, chemo tends to throw a wrench in the thing and lands me in the hospital with no immune system.

I hate waiting.  I want to just get this over and done with.  I want to deal with it.  Head on.  It is such an inconvenience.  Normally I would have gotten the Living Social and found a place for lessons.  But because of the unknown I can’t.  I am not a fan of throwing money away, especially since I’ll be sending a bit of it to medical expenses.  Out of pocket sucks.

Now you are where I am, if you want to know more or have questions about the treatments, reactions, what chemo is like, just ask.  I don’t mind.  It helps people.

Cancer is hardest on family and friends.  They can’t change things or do anything, they can only watch.  While the patient can choose to fight and laugh.  At least I know I have choices.

Not Even a Year

Ah fuck, it is back and I didn't even get a fucking year off from it.

Water Temple in the mountains Bali

That is what I thought when I first felt the small lump back in December.  Not even a year.  I didn't even get a fucking year.  OK, let me give you a brief back story.

Second week, or the  third week of December I was sitting on the pot taking a leak, (you didn't expect me to be all prim and proper did you?) and my right hand (get your mind out of the gutter) was laying on my right thigh, and I thought I felt "something".  Not too big, maybe the size of a nickel? 

So I kept pushing and pulling the skin, and sure enough, it wasn't going anywhere and rock hard.  Well ain't that a piece of shit.  I'm thinking, yep need to go to the doctor, then I thought, too close to Christmas, don't want to deal with that during the holidays.  I'll call the doc after the holidays, but keep track of the size.

I did keep track of the size, it didn't seem to grow much, and the holidays were over.  I went to call the doc and set something up and looked at the calendar.  Oh, I'm not calling.  Not till I get back.  I'm not putting my trip to Bali in jeopardy.  I won't get a refund!!


More back story, back in August of 2013, I decided I was going to take a trip.  There were some really good deals on Living Social.  First choice was Morocco, but the State Department site said it wasn't the most stable place to go, (I only found that out after my son sent me the link and told me to read it), China was next, but there was a bit of tension between the US and China over that hacking.  So I said Bali, and everyone thought that would be a good choice for my first international trip.  If the price weren't so cheap I would have never gone.

Now I got back from Bali on January 22 (yes it was beautiful, and fun and yes I want to go back even with the long flight) so I called the doctor that Monday.  Went in to see him the first available appointment, which was a week, two weeks? later.  He felt it.

CT scan for the chest and abdomen, because you know how I tend to have those buggers start growing out of no where and they grow everywhere.  That was Monday, went for a biopsy with an ultra sound on Tuesday.

The doctor felt it and at first thought a needle biopsy would work, until he did the ultra sound.  That bugger is bigger than a golf ball.  Going into the leg.  So he took four "core" biopsies.   Basically they numb you up and stick a 10 gauge needle into you and this thing goes through the needle out into the tumor and you hear a sound like a heavy duty commercial staple gun.  That is the tissue sample being clipped off.

So there you have it.  I'm starting the year all over again dealing with this.  Isn't it ironic?  I hate winter and this shit always happens in winter, and it always starts out in January/February. 

No I don't know what was on the CT scan yet, or what the biopsy says, when I do I'll let you know.

The way I see it is I have a few different possibilities, I'll list them, starting off with the worst case scenario and ending with the best.

Worst, there is nothing that can be done, and I just live what life I have left (if this happens I'm putting out a begging jar so I can do another trip of a lifetime before I kick the bucket.  Oh a bucket trip for the bucket lady! :D)

Less worse:  I loose the right leg.  Hell, I can live with that.  Will have to figure out how to get around and drive but I can deal.

Less, less worse:  They remove the tumor, damage the leg making mobility a challenge, I have to do chemo and radiation.  Actually, I don't want to have a gimp leg so this may be worse then the less worse.

Less, less, less worse: Minimal damage to the leg, large scar, chemo and radiation

Less, less, less, less worse:  No damage, huge ass scar, radiation.

Less, less, less, less, less worse:  No damage, huge ass scar.

Never mind all of the small little variances in between each scenario.  So it basically comes down to this, ain't no sense in being worried or concerned.  When the doctor gets the results and talks to the cancer board (by the way I am a topic at just about every board because of the type of cancer, severity, reactions to treatment and surgeries, paving the way for others) we'll figure out a path.  If I don't like the options, I'll go find Doctor Flynn at the American Cancer Institute in Pa.

So, I get to put off some things I wanted to do this year, gotta cover the out of pocket expenses.  Seems like when I pay them off BAM they are back.  (I was actually toying with the idea of going to Alaska in June just to see a bunch of folks, but oh well, you guys have fun for me).

That is the latest update from this end of the world.  How's it going for you?

A Journey of Self Discovery

Yeah, I am going to post more in my blog, that really lasted a long time didn't it.  It must be the ADHD. 

Cancer isn't so bad or scary, at least not to me.  This time I could only handle one round of chemo (did I tell you that already?) landed in the hospital because the blood tanked, scare the doctor tanked, ambulance to the hospital because I couldn't drive myself.  Hey at least I was able to drive to the doctor's office, and get there on time.  I knew when to admit I couldn't do it.

Had surgery (did I tell you?)  They did a Whipple on me.  Took out my gallbladder, 40% of my pancreas, the duodenum, re-routed my stomach and liver and what was left of the pancreas.  Had a feeding tube I didn't use, the damn liquid food made me sick, so I stopped it and ate real food.

My son came back to Virginia to watch over me, thank you Jim, and I will always hold dear to my heart what you said as I started to pass out on the way to surgery.  I have always known that, and wonder how you have ever been able to deal with a nut job like me as a mom.

Jasmine came to Virginia for a week, and it was wonderful to see her, and I have her Dad, Jim Sr, to thank for that.

Surgery was March 13th, I was back to work part time two weeks, or was it three, after that, full time at the end of April.

Now that I may have bothered you with the same details again, on to what has been rolling around my head.

Yes, the thing with the cancer was part of the thought process for a couple of days, and then I started to realize how that since I move to Virginia, I have been on this incredible journey of self discovery.

It is amazing.  I went through a move, got a job in a field I really didn't know much about, got divorced, lost 125 pounds, dealt with cancer twice.  And all through it have been able to see the little changes that have occurred and taken place.

The biggest thing is renting space in my head to people or situations that do not belong there.  Fuss or complain about it and let it go.  Keeping it going around and around in your head does you no good, and gives them the last laugh because they are getting to you even when they aren't trying to.

One change is a trash company I changed to a few years ago that had free recycling containers.  So I got the container, and recycle.  They have the ability to crush and shift the different types of acceptable material.  If everyone could do that it would make a major change in the environment.

And yes, when people come over and toss recyclables in the wrong container I tell them and pick through the trash to put them In the recycle bin.  Right now I have two trash bags of regular trash in the can; it has been 3.5 weeks since the regular trash went out for pick up.  I am amazed at the reduction.

I also got a bunch of fake Tupperware from the dollar store, and like Jim, make several meals at once.  He will freeze them but I just make enough that I will have lunch and dinner for three or four days, then make more.  Some things don't freeze then reheat well.

Another one of the things I try to keep up with but I am bad at is when I go out to eat (last time was when Jim was home, if you don't count the lunch one day last week) take a container and put half the food in it.  Two meals for the price of one.

I'm also more OCD about dust, and I am back to vacuuming twice a week, and keeping the sink clean and wiped out.

Before Jim went back to Mississippi to finish his PHD, I went to Lowe's and bought some window boxes for the deck, and a couple pots.  Filled the window boxes with herbs, and a couple pepper plants, put some tomato plants in containers, and decided to re pot the couple of house plants I ended up with.  Since then I have added a couple flowering containers to the deck and a beautiful Avocado tree that I started from a seed, a really nice size palm tree (Ikea for ten bucks!!! it is 4.5 feet tall!), and a few other plants.  Oh yeah, and two strawberry plants too.  Forgot the lavender, I have to get more of it, it seems to help keep flying bugs away.

I need to rearrange things a bit on the deck, but it is a very serene place to sit and have coffee, or laze in the sun when it come over head.  (Yes I am sitting in my little Oasis now.)

Oh, here is another change/growth.  I decided to compost, and yes, I did my research on it.  I am lazy, and I know it, so keeping my trash to compost and taking it downstairs and hauling in to the back, yeah, it'll happen like keeping up with this blog.  Who knows maybe it will eventually, but it is a big change that I can't do right now. 

I even looked at the electric one you could keep in the kitchen, it composts dairy, meat, everything but paper.  It constantly rotates the stuff,  No odor too.  But if I am trying to reduce my "carbon footprint" doesn't that electricity count?  Grant it is suppose to run on about a dime a day, but still.  Hell, I am trying to keep the AC at 80 when it is hot and humid (if it is 90 and really humid, 80 and low humidity will feel great).  So do I really want to get an electric composter?

Yes, I am composting, but I am worm composting.  Red wigglers, and yep, the compost container is in the house.  It only smells like dirt when I open it.  The worms are doing a pretty good job and fairly quick too, and as long as the paper doesn't have staples in it or the glassine windows in the envelopes, I can add the shredded paper to the compost, napkins and paper towels too, as long as they don't have cleaning solution on them.  But I think the homemade container is better than the one I got from Amazon.  Just saying.

Speaking of cleaning, I found (again) the Heinz Cleaning Vinegar.  6% acidity, it isn't the easiest to find, but worth it.  I have no idea why I stopped using it.  Put orange peels in it to give it an orange scent.  I use it straight, on everything.  Put it in a spray bottle and go to town.  I just make sure that the spray isn't too fine of a mist, because it can irritate the throat and lungs.  Yeah, you smell vinegar, but that smell goes away, and you are left with just clean.  (Make sure to toss your rags that you clean with in the washer when you are done, or you will smell them.)

Last week I did a Spring Clean Cleaning using the vinegar instead of the usual cleaner, house was spotless, smelled clean, and best of all, the vinegar softened my hands rather than drying them out like the Mr. Clean or Pine Sol, or any of the other cleaners I have used.  (The only one I like better than the vinegar was the Orange Clean that used to be sold at Wal-Mart.  I miss that stuff, smelled like fresh squeezed oranges, and did one hell of a great job cleaning the shelter, and a bottle went a long way too.)

The whole point to this is I have changed.  Changed a lot since I left Cleveland.  I have changed for the better.  But the changes didn't happen over night, it took a while, I have been here for five years.  There have been lots of little changes that ended up being bigger changes.

And I am still changing, growing as an individual, growing as a part of the world.  There are still parts of my personality I really don't like, but I am taking baby steps on improving that.  I really do need to start a regular exercise program, not the hit or miss like I have.  Thinking about it now, I really did not like myself at all when I lived in Cleveland.  Now, I do, I even like being by  myself, and am OK with it.  I learned I don't need someone in my life to complete me, only I can complete me.  I am a work in progress.

What started all this?  Cancer.  Cancer really started me on the road to change.  Even in 2003.  It made changes.  Cancer nearly killed me three time.  But I made it, and grew from it, and changed.  Took some time, and lots of little changes but I changed and grew and I am continuing to grow.

Life is good, especially when you can sit on a deck, with ice coffee, two Pitts, know your two adult children love you just for you, can listen to the birds, cicadas and crickets in perfect evening weather.

Yes, life is good.  I hope each and every one of you make little tiny changes that bring you joy.

A Whore's bath, and My Hair is in the Sink.

First, let me get something off my chest.  It drives be nucking futs when people refer to either a male or female that has a different viewpoint of sex as a "hoe".  A hoe is a piece of gardening equipment, not a person with questionable sexual behaviors.

For the record, I believe that both males and females can qualify as a whore, it is not a gender specific thing.

Now that is out of my systems, let's get down to the different types of "Whore Baths".  Yes, there are a few, at least the way I look at things, and I will define each (don't worry I'm going somewhere with this).

There is what I would define as the "quickie" whore bath, which I swear more females do, why else would a woman walk out of the house stinking of perfume?  A "quickie" whore bath is when a female grabs a wash cloth, hopefully with some soap, washes her face, gives the netherworld a quick wipe or two, sprays a shit ton of perfume on, put on the make up and out the door. 

Now why do I say that it seems lots of females do this?  Just stand in line at a Starbucks in the AM, or the grocery, or just about any where.  You smell the perfume before they walk in the flipping door!!  Burns the eyes and nose. 

Ladies, that is not attractive!!  That does not make the male of the species want to get any closer to you than he would want to get to a stinking pile of steaming elephant dung.

One spray in the air, walk into it.  A light barely there scent that is attractive.  You don't have to smell it trust me it is there and others will.  It will make you more attractive.

Second type of "Whore's" Bath.  A tub full of hot water, a bar of soap, and a wash cloth.  Dip the washcloth into the tub or basin, soap it up, wash your body, dipping and rinsing and soaping with the dirty water in your tub as you go along, consequently spreading dirty soap scum water all over.  Yeah, not pleasant.

The third type of "Whore's" Bath is the microwaved, pre packaged deodorant wash clothes.  They come with eight or ten in a bag.  The instructions actually break down how to uses them.  One for your face and neck, one for your right arm and hand, one for the left, and so on.  They make sure there are two for the netherworld.  One front and one back.  But at least you feel refreshed, and your skin doesn't feel like ten layers of it was removed with the soap.

The third type of "Whore's Bath" is what I get to experience.  You see, I am hooked up to the pump, and they have a portable heart monitor on me.  In order to get a shower, I have to be disconnected from everything, and that requires a doctor's order.  Yeah, you read it, a doctor's order.

The down side of showering here is the soap.  It dries every inch of you up.  So, I'm going to pack a "Just in case Jean goes to the Hospital" Bag.  And in it make sure I have my soap, shampoo, and things that keep my skin feeling normal rather than like something stretched too thin.

So I get my "Whore's Bath" today, and when I was done I decided to use the shampoo in the little kit to wash my hair.  My head and neck have felt like the muscles are wound tighter than an over wound watch.  So I stick my head in the sink, turn the hot water on, and it felt like heaven.  I could feel the muscles starting to give a little.  So I soap up my hair, and it starts coming out in hand fulls.  I clean out the sink, and keep running the water over my head and neck, and rubbing the hair, and it keeps coming out in hand fulls.

LOTS of hair came out.  I now am sporting the splotchy bald patch look which I hate, so when I go home, which maybe tomorrow, I want to stop at a barber.  I can't walk around like this.

Oh, the Telemetry people contacted my nurse and told him my hear rate went up and is still up, so they sent him to check, and there I am drying the splotchy head.

"That is why your heart rate is up!"  Me: "Yep.  But I'm done for now."  "How long have you been washing your hair?"  Me: "About twenty minutes, I have a lot of hair to come out."  "I'll tell them."  Me: "OKAY DOKAY".

Yes, the sink was full of my hair and I had to clean it out twice.  Yes the sink was nice and clean when it was needed next.

No Lemon Slices for the Tea, and a moment of your time please

Nope, can't have any fresh fruit, or veggies.  So basically it all has to be nuked, cooked and dead.

I can't stand the coffee here, so I switch to tea with lemon.  Yeah no lemon.  Huh.  But they do have Mandarin Orange Slices on the menu, every time I ask for them I hear, you are not allowed fresh fruits or vegetables, I say they aren't fresh, they are canned.  They check and I get my Mandarin Oranges.

Now, I like them but it isn't so much so I can have the orange slices, it is so I can pour the syrup into the tea, which helps make it a little more tolerable since I can't have my lemon.  Yeah, I eat the oranges too.

Not sure exactly when I will get out of here, the infectious disease doctor thinks I may be able to go home soon, (he didn't define soon) but I'd have to be on antibiotics.  He was thinking oral, but since I have a port, he is of the IV preference.  Yeah, IV antibiotics at home, but he also said something about keeping me till Friday, he would talk to Dr. King and Vaughn.  Friday?? Is he out of his freaking mind?  But I am still waiting to hear from the surgeon and Dr. Vaughn.  And the consensus of the platelet issue. Hurry up and wait.

Now, I'd like to ask a huge favor from everyone.  My kid sister was diagnosed with breast cancer.  The doctor said it was early, which is a good thing.  She is terrified. The final diagnosis of the type won't be back until the biopsy comes back Friday.  He told her she would probably do surgery, radiation, but nothing is solid yet.  She is on her way to another doctor's appointment right now, she'll call me when she gets done.

I can't explain why cancer doesn't frighten me.  I don't know  how to explain it.  I know the word frightens her.

So if you would please, light a candle for her, say a prayer, send her healing thoughts.  She needs the strength.  She is scared.  Right now she is my bratty little sister who used to be a real pain at times, but she is scared and moral support is what she needs.

And if you know of any breast cancer links for help, support, whatever, I will be happy to pass them along.

Hey can I get another piece of gauze? I'm still bleeding

I'll get around to explaining the title in a bit, it is all a part of the story, the adventure if you will, and yes, I do believe I stopped bleeding, at least it hasn't soaked through yet.  Eh, whatever.

Chemo started on February 4th.  Ten whole days earlier than in 2011.  Yes on February 14th 2011 I started chemo.  Happy Valentine's Day! First day is ok, I mean it went well, by the time the six hours was done, I was tired, but ok.  Made it to wok everyday for an  hour and a half, except for Friday, just couldn't motivate, nausea, hell I couldn't even get two sips of coffee down.  But I dutifully got my ass to chemo and got my ass home.

One of the most disturbing sides effects (only one you ask?) is the fact it has affected my breathing.  What I could normally do three or four times with out a problem (get your dirty little minds out of the gutter!!!! :D) go up and down the stairs, I can't do once with out huffing and puffing for air.  I never knew how much I took the simple thing of breathing for granted. 

I spent Friday, Saturday, and Sunday in bed, except for the doing my laundry, which I didn't put away right.  It is driving me insane that it isn't put away right, and my room isn't right, and my house isn't right, I am literally going crazy over dust bunnies, and I can't help it.  A clean home makes me feel better, any way after letting you into a bit of my quirks, Monday rolls around.  I get up, huffing and a puffing, take care of the dogs, yeah I'm not making it to work.  So I let my boss know and he makes sure I get a ride to my doctor's for my Newlasta shot.

My ride home was Michelle and a stop at the grocery was on the schedule, ten quarts of orange Gatorade were on my list, along with Bob Evans Mashed potatoes and Mac and Cheese.   I waited in the car and Michelle made the run.  Two ice cream scoops of taters were wonderful, then I go crash and burn.

In the morning, Michelle comes up stairs and there I am sitting in front of the dishwasher huffing and puffing, clenching the half and half waiting for my cup of coffee.  I asked her to ask the CWO if it would be ok for me to park in the visitors parking space instead of where we normally have to park because it would make it easier.  She did and he told her to tell me just park there and he would take care of it.

So I did, and by the time I got to my desk I was so happy to be able to sit down.  But I got to work, and I made sure I got back to where I could sit when I felt it hitting a bit hard.

CWO told Michelle to move my car to the handicap spot, and he would take care of it.  I work with the best people.

But I make it through the week, feeling a bit rough, Thursday was ok, but Friday AM I knew I was in for a rough one,  down a couple of aspirin for fever, all I have to do is make it till 1 so I could get to the doctors.  By 1 I was feeling rough, but I could drive, worse by the time I got to the doctor's.  They took blood for my counts and I got to go sit in the office.  Daniel walk in and says, "Oh Honey, you look like hell!"  My response is a laugh, and "And I feel like shit."  Needless to say my numbers in the tank. Doctor wants to admit me, can you drive to the hospital?  Me, nope, not feeling like this.  When I left work I was ok to drive, but I crashed hard and fast.  I know my limits.  So, off I go in an ambulance.  I had Michelle's number scribbled down so they could call her and let her know to pick up my car, I thought I left my phone at home, turns out it was in the car.  DUH.

Admitted Friday, lots of blood taken, my arm is bruised and I look like a junkie.  (Did I mention the hair is falling out?) The doctors talk to me and tell me my blood levels, uh yeah I need transfusions.  I've had bad reactions before to them so they pretreat.  The blood transfusions go ok, and the tests come back my platelets are gone.  So a platelet transfusion is on board.

The first half of bag goes ok, then it hits. I start to shake, the first thing I reach for is the O2, and try to cover up because I start to freeze and shake, just as I try to press the call button my nurse Lisa walks in, next thing I know there are like five nurses, a doctor, and all working to get the reaction under control.  I'm running a fever, but my body is freezing, I am so cold I am shaking so hard I can't breath, I actually have to try to calm the shaking and think breathe in from the nose out through the  mouth.  They cut off the platelets, give me something for the reaction, and I start to feel warmer, so the shaking starts to subside, I stop shaking but I stay covered up, I tell them I'll peel off the layers as I feel warm enough, and as they were all taking in what had happened I started to remove layers of blankets. I scared a few people.  But the nurses are all top notch here.

Next day the Doc comes in says my platelets are still way too low and I need another transfusion.  They want to put a cocktail of Benadryl, steroid, and something else.  Run it slow, three hours, have me checked and vitals taken like every fifteen minutes to thirty.  At the first sign, tickle, or clue from me it stops, and the line gets flushed.

That was the longest, most stressful three hours.  By the time it was done, I had a tension head ache like you wouldn't believe.  Two percosets.  Helped the pain, but didn't do a thing for the tight muscles in the neck and head.  Slept like shit last night too.

Talked to the Nurse Practitioner from Dr. Vaughn's Office today, my platelets are still low and she thinks another transfusion is in order, we talked, and agreed to not do it today, and see what the counts are tomorrow, then if needed the same protocol will be used.  Seems reasonable.  I only wish the same nursing staff were on duty tomorrow.

What caused the reaction?  They can test for disease but they can't test for things the donor may have eaten that you are allergic to, or medicines.  If the donor of the platelets had Vancomyicyn or MSG for that matter.  My body reacts to what it sees as something that doesn't belong.  Not fun at all. 

Rather frightening.  But all is well at the moment.  I am stuck here another couple days.  Still have issues with one type of bacteria growing in the urinary tract, and e-coli growing in my blood.  They think the tumor is some leaching it from the intestine.   No I don't have it, but it is in my blood.  Very weird.

When they told my that I went wait, I do this, this, this and this.  The doctor laughed and said it wasn't my habits but the tumor may have found a way to leach from the bowl.  Yeah, lucky me.

That is the complete update, and I am going to see if I can get some Tylenol for this headache and hopefully get some sleep tonight.

Oh yeah the title, they took some blood to test, did the usual ball of gauze, pressure tape.  Well I soaked through the ball of gauze and had to ask for some more.  It did finally stop.

Day Four - TGIF

Didn't make it to work this AM, the nausea was nasty.  Took a second dose of Compazine and Zofran an it didn't help.  Went back to bed until I had to get up to get ready to show up for chemo.

TGIF.  Last treatment for the week.  The port will be de accessed and I will have two weeks to recover before the next cycle.  I was hoping for three, but I heard the nurse wrong.

I think the chemo is hitting a little harder/faster this time.  Which stands to reason.  I think.  I am already at the point where I want this done and over with, and it is only week one.  I need to work on my patience.

I don't know how I am going to keep it together for another 5 cycles, then surgery.  How am I going to do it?  Everyone tells me I am a pillar of strength, someone with courage.  I keep telling them I am only human, and trying to face this with as much grace and dignity as I can.  Trust me, there are days that it is really difficult.  I don't want to let people down.

I don't want to let my kids, friends and family down.  That would be the worst thing I could do.

I can't lose my sense of humor, I have to keep it sharp, but on days like today it is difficult.

Maybe Pannera potato soup today while the nausea is at bay.