Biopsy, surgery, waiting on the May Clinic to decide what is next

February 18 I had a biopsy done.  The doctor and nurses were really nice.  They were explaining what they were going to do, and I told them don't sweat it, this ain't my first rodeo.  Which made them go huh? Then ask what I meant, I told them.

They used an ultra sound, and what I thought was a tumor that wasn't too large, turned out to be the size of a golf ball.  Did I mention that before?  Remember sometimes I get lost in the ideas that run through my muddled brain.  I didn't even  have to see to know it was larger, when the doc says, no needle aspiration, we are taking tissue samples, it kind of lets you know it is bigger than you thought.

So he numbs me  up, gets the clippers, and takes four cuttings.  The loud snap of the thing is rather funny.  No I didn't feel a thing, and watching the ultra sound screen was interesting.  Got that done, then it is hurry up and wait.

Close to two weeks later I am in the surgeons office, being asked when do you want to get this done.  My answer - tomorrow?  I even got the choice if I wanted to do a hospital stay or do it as an outpatient.  Since the outpatient surgery suite is at the hospital, if anything goes funny I'm right there, but if everything goes well, I can just go home.  Sounds like a plan to me.

He said that the ultra sound images looked good for a total removal with good margins.  So we scheduled surgery for March 18th. 

Oh, yeah it was a retroperitoneal sarcoma, high grade, although today he said that the preliminary findings from the Mayo Clinic made it higher, I think that just translates into it is very aggressive and  is poorly differentiated or undifferentiated.  Basically that translates into it has no real pattern it just grows, no cell organization to speak of.

So now they want to get the entire report back go through it and decide if radiation would be a course to go after.  Trying to keep chemo off the table since I crash and burn so fast.  Doctor Vaughn is going to bring it  up at the tumor board.  Who knows, maybe yes and maybe no.

I can walk without a problem, oh the margins are negative, so that is good.  There is a good portion of my right thigh that are numb.  Literally stick a pin in and I don't feel it numb.  Some of the smaller nerves may heal, but again, that is a who knows.

I did find out one thing, I have been abusing it.  Started yoga, again, figured gentle stretches, would be good, and my body need the exercise like you wouldn't believe.

Wrestling with two pit bulls wasn't a smart idea either, had Sasha flipped over and was holding her and Bailey comes over and lands two paws on the incision.  I feel a tearing, ouch, ouch, the feeling of  hot liquid.  I thought damn I ripped open the incision.  Nope, but I did cause some damage that cause it to bleed under the skin and seep fluid under the skin.  The body will reclaim the fluid, but it will take a while and I will have to not abuse the leg for a bit.  Although he didn't say not to do yoga.

Oh, and Doctor Vaughn told me that I will be seeing him every three months and getting scans every 6.  I'll never be cancer free, only waiting until the next eruption.  Could be a week could be a few years, but it is always going to be there.

And that is the news from this little spot in the world.

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?