Face Your Fears

I know I know, it is easier said than done, but at least try!

To be honest, just about everything I have done on my "adventures" (including my day to day not so high pressure life - seriously, my stress factor is dust and dog hair and keeping the house looking clean).

It has been mentioned from time to time (OKAY, I harp on occasions) but it is something that needs to be revisited.

Let me explain something first.  To me there are fears and there are phobias.  A phobia to me is something that can literally paralyze you.  Okay, so they can be the same.  Just thinking about some of mine and how they affect me.  But a fear can be not doing something because you don't know how, or are afraid of looking foolish, or meeting new people.

When I decided to jump out of a perfectly good plane, for example.  There was fear.  No doubt about it.  But not so much that it paralyzed me.  So I  jumped.  Guess what?  It was amazing.

I have issues with meeting new people too. I am uncomfortable.  Yes, I have trust issues.  I feel awkward, out of my element.  What is my element?  My home.  My Kindle. The library.  So going and doing new things requires me to actually push myself.   I am a great actress.  Most people say I look like I am comfortable with new folk.  I try.

Trust me, I can talk myself out of doing something very easily, and stay in my "safe" bubble.

That brings me to phobias.  Yes, you can overcome them, and work on it.  Depending on what it is, you may be able to go it alone, or get a little help from your friends.

For example.  Spiders.  I hate, hate, hate, hate them.  Bugs too for the record (some more than others).  When you live on your own, you have to learn to deal with them.  I am not totally fine with spiders, but now I can smash them to smithereens with something.  Or spray the insecticide on them.  I don't like it, and my stomach flops after I am done, even can have the shakes, but I am not as bad as before.  Trust me, there are some that I will not deal with and run, screaming like a little girl to get a way from, and find someone else to kill the spider or bug.  Just looking at pictures of them creeps me out so bad I get nauseated.

Haven conquered the fear, but I have gotten better.

Now onto the big one.  One that I can panic from.  I am terrified of water above my head.  I mean, when I first started this venture, full tilt panic.  But I like the water, it is peaceful when not storming - so go figure.

I started facing the water fear four years ago?  I made a dream trip to Bali.  I always wanted to scuba dive somewhere the water is clear.  I can swim underwater, so of, go figure.  I never said this made any sort of logical sense.  My swimming ability has been drastically reduced since they removed the left hamstring.  I never realized how useful the hamstring was in swimming until I tried.  OH, yeah, I have been afraid of the water since I was around 10.  Nearly drown.  Yes, after that I learned to swim, but it didn't help much.

The instructor was really understanding.  I wouldn't call what we did diving, but I got into the clear ocean, when down a few feet, came up, went down a few more feet, came up, did that probably five or six times before panic starting edging in.  The water being so clear was a help I believe.

I also dislike smaller boats.  I am afraid they will flip, and I'll be in deep water that is murky and can't see in.  Paddle boats aren't too bad, they seem harder to flip over.  Canoes on the other hand. Well....

One of the times I was visiting New Orleans, Jim, Liz, and I went to City Park.  They didn't have any kayaks, but they had canoes.  Jim and I had one, Liz I believe got the last kayak.

I had a death grip on the sides of the canoe.  But gradually I relaxed, and started taking pictures.  Oh, there were a couple times I grabbed back on the boat with that death grip, but I made it.

Today I got into a kayak.  They had an intro to kayaking for seniors, so I signed up for it.  I made myself get up at 06:00 to go.  Took care of the dogs, made coffee, grabbed a sandwich for a snack.  I was set.  Got into the car, my mind started coming up with all the reasons why I SHOULDN'T do this.  All I could think of was the kayak flipping over and me being stuck underwater.  OR just flipping it and being embarrassed.

Gritting my teeth, I  drove to Curtis Lake Park.  There were a total of seven people there for the class, everyone else had been in a kayak before, on vacation or with rentals.  They wanted a better idea of the right way to kayak.

They had us all introduce ourselves and explain why we had taken the class.  It was my turn. "Hi, I am Jean Lee, and I am here to face one of my fears. I have never been in a kayak before."

To say getting in was a bit awkward puts it very politely, but I got in and didn't flip it.

The one volunteer could tell I was a bit apprehensive, and she talked me through a couple of things.  I finally relaxed (still had a death grip on the paddle) but I was able to stop and just be.  Whenever I got antsy, I stopped, breathed and was just there.

Rowing got a bit frustrating for me.  I rowed like a drunken sailor.  After awhile, I was doing it decently, and could feel the difference in the kayak movement, but as soon as I realized I was rowing correctly, I lost the rhythm.

Would I do it again?  Yes.  Would I still be afraid?  Yes.  There is a trip they are doing Tuesday from Crows Nest, and if I didn't have to get my stuff together and packed for Adult Summer Camp, I'd go.  Yes, I pack and unpack just so I can Tetris everything into the smallest space possible.

Come to think of it, I will be doing this again at Adult Summer Camp.  There is even beginner rapids.

What fear have you faced?  It doesn't have to be a big huge effort.  Sometimes, just the act of a person walking out the front door is facing a fear.  For some females, walking out the door with no makeup on is terrifying.

So what little fear have you faced today.

As the Chemo Drips

So much for posting an update quickly.  I just posted the update I did two weeks ago and sent the copy to my sister.  Yeah, I'm efficient like that.

First, let me explain something.  The fatigue that is caused by the drops in red cell count is telling.  It effects everything.  Your mood, thought process, your out look.  Not that I have had a negative out look, just getting tired of somethings.

I tend to be a bit more cynical and critical when I am tired.  A bit bitchier too.  What can I say - at least I am honest about it.

Life isn't perfect, hell, even when I am healthy it isn't, but it is my life.  To be honest, I was hoping never to have to go through chemo or surgery ever again.  But alas, that is not to be my fate.

One of the things that bother me is the fact this tumor is inoperable.  So chemo is my only choice.  It is on the heart and part of the left lung.  Well, I can't live without a heart or lung, so yeah, I'd say inoperable.

In the past I had chemo then surgery to get the tumors.  Or just surgery when the tumor was found soon enough.  No chemo when you have great margins.  Oh, and radiation in combo with the other two.  This time, there is only one.  Chemo.  What happens if the Navutro doesn't work?  There are other possible therapies.  But no guarantees on any of them.

One of the things I dislike is the, unknowing.  OK, is this making a difference?  Really, how do you tell except when the whole treatment is done and there are scans and xrays.   I had to have an echo cardiogram done Monday.  The chemo drug they are using with the Navutro causes damage to the heart, (remember in 2003 the Cleveland Clinic used another drug that damages the heart.  They used the maximum allowed for a life time) I was watching and you could see a difference in the texture on the bottom of the heart versus an area a the top.  They also used Doppler to show the blood going through the valves.  Color determined what was going in and what was going out.  I haven't heard anything, so I am going to assume no news is good news.

Admittedly, I do like the chemo schedule.  Once a week.  Two weeks treatment, one week off, two weeks treatment, one week off, you get the picture.  That one week no chemo gives your body a chance to try to recover.  Not long enough for mine.

I am tired.  So if I sound a bit negative, don't get in a panic.  If I get a bit over emotional, don't panic, I am tired.  Another 45 minutes and I am out of here.  I may stop for lunch somewhere.  I am craving sushi.

And before you all start, "You shouldn't eat sushi while going through chemo".  I know that.  So does every other patient that goes through this.  But you know what?  I'm eating it anyway.  I am past the point of giving a fuck about what I eat. 

In reality, I am going to die.  Maybe not this time, maybe not the next time but it will happen.  So, why should I not eat things I enjoy?  What is it going to do to me that cancer hasn't? 

If I were rich money wise, I'd be driving and flying all over the United States visiting friends, coming back for chemo, and setting off again.  I'd go to Tuscany and tour the vineyards, and eat lots of good food, go to Utah, New Mexico and where ever the winds blows.  But I'm not rich, so I can't.  but if they ever tell me I am terminal.  I am going to Tuscany, and a few other places.

I think I'll nap for the last bit of chemo.  I am tired.

Fatigue - Or a Little "Whine" with that?

I know, it is past time for an update.  My sister has been asking me for one so she can post it to the GoFundMe campaign she started to help me.  So, I am going to update my blog and send her a copy of this.  It isn’t that I don’t appreciate all the help and want to let people know what is happening, sometimes it is just hard to share some of the things that go through my mind as things progress.

You see, if I am being truthful, not only am I updating folks on the progress with the chemo, but the other issues, like emotional, and the such.  Sometimes it is really hard to put things into words.  Oh, there are times that I am very eloquent and can express what I am thinking but unfortunately many of those times are when I do not have access to put them down.  Well, at least they sound good in my head.

Right now, I am tired.  Physically and emotionally. Frustrated.  Oh, so frustrated.  I am tired of fighting the system.  I applied for SSI, was turned down because I had a total of $2000.00 sitting in the bank.  I applied for disability.  Got turned down because I am working.  I asked how am I supposed to pay for my insurance if I don’t work? Rent?  Food? Utilities? What I make doesn’t cover.  I am a penny pincher to the max, so I am not living above my means.

To be honest I want to work.  I want a job.  I want benefits.  But I am getting so tired of the hunt.  I won’t give up.  I’m still looking and will continue to do so.

Emotionally, I am tired of fighting. I am tired of fighting the system.  I am tired of fighting cancer.  I just want a normal life, go to work, save a little bit, travel once in a while, and retire.  I don’t want to keep working till I die, and I am so tired of cancer.  I am tired of living with it, I am tired of having so many doctors, I am tired of the chemo killing me.  Did you know that the drug they use in conjunction with the Lartruvo is damaging my heart?  That is on top of what was done in 2003.  I’ll be going in for an echo cardiogram with a Doppler to check my heart.

Even with that, there is no guarantee that the cancer will be gone until the next time.  What happens if it isn’t gone?  A different type of chemo.  If that doesn’t work?  A different type of chemo.  Who knows clinical trials. Remember it is inoperable.  Has something to do with the location, you know, the heart thing.  Even if it is gone, how long until the next time?  I had it removed from my lung April 2016, it was back in November.  Yes, it wasn’t officially diagnosed until January.  But you get the idea, six months.  The time frame between was only six months.

So far, the chemo is going well, I suppose.  I say it that way because I haven’t landed in the hospital with a crashed immune system.  Most of the side effects have been fatigue, headache, nausea, loss of appetite, I am losing the sense of taste, which really sucks.  The hair is slowly falling out, but the regrowth of the leg hair is so minimal it is nice not to have to shave for a change. 

I’ve lost weight.  I check my weight every couple of days, and weigh myself in the morning about the same time.  I am down to 107 pounds.  I do try to eat.  But it just isn’t sticking.  That and the cold I picked up somewhere isn’t helping.  I am being very cautious of that, don’t need pneumonia.  Maybe that is why I have been craving soups.  Hot soup.  Well, that and liver and onions.  Hot soup with the steam helps, and it warms me up.  The liver, probably because the iron is low.

The fatigue is the worst.  Well, after the loss of the sense of taste.  Last Friday, I woke up feeling great, full of energy, and felt good.  Which was surprising since I had chemo the day before.  Felt that way most of the day, even went out to dinner with Jim, and Nate.  Saw Logan.  Good movie, it ended two story lines, in a good way.

Unfortunately, most mornings I do not wake up like that.  I am tired and cold.  I am always cold. I get going and get to work, feeling ok.  Even think about going to the grocery store.  But usually by the time I leave work, I don’t feel like trying to shop.  I just want to go home, make some hot tea and put on warm fuzzy clothes.

I am down to one job now.  I was working seven days a week.  The last blood test showed my immune system starting to lower itself, so after some discussion, I told the winery that I wouldn’t be working there for a while.  It is the one place I was exposed to lots of people, kids (they have a play room there and a fantastic bistro).  Being a hospitality service, people show up to work sick since the only way to make money is through tips.  My other job, I see three people in the day.  So, not as much exposure.  Sad thing is between the two jobs together, I don’t meet the roof over the head, insurance and utilities.  I need to find a new job.

On the up side, I got to cross something off my bucket list.  Seeing New Orleans during Carnival.  I wasn’t there for Mardi Gras, but the party leading up to it can be just as fun.

I had enough miles built up on a credit card for an economy round trip to NOLA.  The ride down was lousy, kid sitting on her parent’s lap, kicking the back of my seat.  Spent a week with my son, going to parades and eating.  At least I had a sense of taste then.  It was fun, and I really enjoyed the Chewbacchus Parade.  Basically, it was a Com a Con parade. 

Ok, I am done whining and I am going back to work. 

It has been awhile - Dance five complete, Dance six to start

Well, the last time I posted, it was to explain my arm tattoo.  Since then, spring 2015 they found a tumor in the left lung.  You know my good lung. 

It was decided that they would do surgery (separate the ribs, remove the tumor), if good margins were obtained, no chemo.  They chose to take this route since the last time I had chemo it nearly kill me.  Well they got good margins!  Surgery on Monday, back to work on Wednesday. 

Well since then the contract I had a job under at the Marine Base ended, so I became unemployed.  But I have Cobra, for now.  October, a small spot showed on the CT Scan.  They thought it was a small pocket of fluid, and opted to watch.

November I started having issues breathing.  Like a weight on my chest.  Some days it was worse than others.  Thanksgiving was spent in New Orleans with my kids, and it seemed OK, so I figured that maybe I had just had a chest cold or something.  Once I got home, one day it would be OK, the next it wouldn't.

It kept getting worse, and finally after a rough weekend, I figured on Monday I'd call my Family Doctor, and be told I had walking Pneumonia.  Well, Monday I felt OK, not perfect but a little better.  Tuesday, I felt crappy, so I called.  Talking to the appointment clerk, she transferred me to the nurse, I told her I was having a hard time breathing, a weight on my chest.  Well, she said go to the Fredericksburg Office to their urgent care, me, I figured, I'd just drive to the hospital near me.  Only a few miles away, and I would be able to drive home.  Yeah. 

The ER doctor came in and the "fluid" area was larger.  They wanted to keep me and have radiology put a drain in the lung.  OK. After that he came in and tells me that they are going to transfer me to Mary Washington Hospital because they are better equipped to handle my issue, and possible complication.  (Translation, my doctors wanted me closer, and the hospital is considered a trauma center).

I met one of the Oncology doctors mine works with, he tells me that they will be following, and talking to the Tumor Board about me the next day.  He started talking about Antibody treatment and newer just approved by the FDA treatments.  I just dismissed it.  All my doctors track me. If one knows something, they are in communication.

Well they put the drain in and no fluid really came out.  After a couple days of it, I talked to my Thoracic Surgeon, they want to drain it surgically, me - I am ready to agree to anything as long as I can breath without an elephant on my chest.

Fast forward to after surgery.  Talked to the doctor, he said there really wasn't fluid in the lung but pockets on the lung and attached to the heart.  Me not really thinking anything worse, cool, I can breath.  He got everything he could, and sent it out to several labs for biopsy.  Everything they take out of me goes for biopsy.

January 7th.  The surgeon is back in town, at 8:00 AM, I get a call from him.  Do you have time to talk?  Sure! I say in my normal upbeat voice.  Then he drops the bomb.  The cancer is back.  All the doctors know.

January 13th.  I had a follow up appointment with the surgeon who did the Whipple, and removed the tumor from my leg.  We chatted (yes he already knew)  He asks me what plans do I have?  Well I want to go to New Orleans for Mardi Gras, but that schedule hinges on treatment, and I'd really like to go to Tuscany, see the Rockies, the Grand Canyon.  I want to take a helicopter ride over it and a donkey ride into the canyon if they still do that.  He told me do it.  Don't let the treatment interfere with doing it.  OH OH.  When a doctor says that, it is time to be a bit concerned.

Well, I went to the Oncologist office after that, yeah, it is back, it is attached to the heart. 
Me:  OK, so now what?
Doc:  It is inoperable.
Me:  Oh.  So translate.
Doc:  Stage IV, inoperable.
Me:  OK, so what is next?
DOC:  Antibody treatment, just approved by the FDA, but it is approved with only Adriamycin.  Which you had the entire amount allowed.  Anymore would damage your heart.  But there are alternatives to it; the insurance company will have to approve it.

He wanted to start this week, but everything needs approved by the insurance company.  I have a CT scan scheduled Friday to see what it looks like.  They need to try to "Router Rooter" my port, and if they can't, replace it.  But it all depends on the insurance approval.

Now since I am unemployed, I have Cobra.  But my Cobra runs out in March, so in order to get insurance and covered during the Open Enrollment (pre-existing conditions) So, I have an ACA policy that kicks in in February.  So one insurance company will approve anything in January, and it will all have to be redone in February. 

So I will be shelling out for out of pocket and deductibles on two policies.  But at least I won't have to meet the $5500 on Cobra, and the $7000 on the new insurance.  Very confusing.

But I am a bit frustrated.  I work two part time jobs.  Between the two I bring in about $930 a month.  More than unemployment, and living off my savings while looking for a job. 

ACA said I make too little for a tax credit. 

Yes, I am still looking for a job.

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?

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 Three, Cycle One, Third Dance

I'm cold.  I have a vest on and a wrap and I am still cold.  May put my jacket on.

Anyway, this day is finding me puffy like the Stay Puff Marshmallow Man.  Even the ice on the eyes to reduce puffiness didn't  help. 

Since Tuesday, I have put on 9 pounds in water weight.  Can you say it is time for Lasix?  I knew you could.

The nausea is a bit worse this time around, and the fog is showing up.  As long as I am in no hurry to get the thought down or do something it works out.  Tired too after treatment, but I'm wondering if it is just because I am tired, or the nausea, I tend to want to sleep when I am nauseated. 

I thought I was on a cycle of one week of chemo and three weeks off, but looking at the list of appointments, it is one week on and two weeks off.  The next schedule is the 25th.  I'll have to double check on that.  Either way you look at it, it is still a lot of chemo.

Thoughts are drifting, time to save this as a draft and come back later.

Well it is later and I don't have any great insights to this mess.  I'm tired and I want my fresh brewed Dunkin' Doughnuts coffee from my kcup. 

Only about an hour to go, getting done a bit earlier today, tomorrow will be earlier.  Then two days to get my head together  for work.

Today isn't the most positive day, I feel run down.  Hey at least I have time to dig through the family tree when I feel up to it.

See you on the flip side.

Day 2, Cycle 4. Chemo Drugs 101

Well, the Aloxi/Decadron, anti nauesa drugs went in, now the Mesna, helps prevent damage to the bladder is going in, then the Methylene Blue, suppose to help the side effects of the Ifosfamide.

When I first went through Chemo in 2003 I had an interesting chat with my Doctor.  Both he and I agree on this over simplified version of an explaination:  Chemo therapy is feeding the body poisons while trying to protect some other organs, killing the body's cells off slowly, basically killing you slowly to kill the cancer, to bring you back from the low depths the chemo brings you too.

Basically it is true, you slowly begin to feel like crap, your hair falls out, your immunial system is compromised at times,  your blood production is slowed.  By the time chemo ends, at least it is for me, I feel like crap, look like crap and don't want to eat.

I figured that it my help if I list my drugs, and what they treat, with some of the side effects.  What may it help?  It may help those who know someone going the chemo, watching the effects wondering why it is happening.

So here is my list with what they do and side effects.  There are many more drugs and side effects.  These are just what I get.  Need more information?  www.chemocare.com

• Aloxi - anti nausea medication.  Helps prevent the nausea the day of, up to 24 hours after the chemo treatment.  Side efftects:  Allergic reaction.  Headache, constipation, tiredness. 
• Decadron - anti-inflammatory medication, anit nauea.  Relieves inflammation in various parts of the body. It is used specifically to decrease swelling  associated with tumors of the spine and brain, and to treat eye inflammation. Treat or prevent allergic reactions. As treatment of certain kinds of autoimmune diseases, skin conditions, asthma and other lung conditions.  As treatment for a variety of cancers, such as leukemia, lymphoma, and multiple myeloma.  Used to stimulate appetite in cancer patients with severe appetite problems.  Also used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands). (OK so this wasn't super simple explanation)
• Emend - Anti nausea med, blocks chemicals that cause nausea.  If you already are nauseated, it doesn't work.  Side effects: headache, flushing, allergic reactions, shortness of breath.
• Mesna - Protects the bladder from damages from the effects of chemo therapy drugs.  Side effects:   bad taste in the mouth, diarrhea or soft stools, headache, nausea, vomiting, fatigue.
• Methylene Blue - Treats methemoglobinemia, vasoplegic syndrome, ifosfamide-induced encephalopathy, cyanide poisoning. 
• Ifosfamide - Used to treat:  Recurrent testicular cancer and germ cell tumors, Sarcomas (soft-tissue, osteogenic sarcoma, Ewing's sarcoma), Non-Hodgkin's lymphoma, Hodgkin's disease, Non-small cell and small cell lung cancer, Bladder cancer, Head and neck cancer, Cervix cancer.  Side effects:   Low white blood cell count. (This can put you at increased risk for infection.)  Low Platelet count. (This can put you at increased risk for bleeding.).  Hair loss, Nausea and vomiting, Poor appetite.   These side effects are less common side effects (occurring in about 10-29%) of patients receiving ifosfamide:  Central neurotoxicity (including sleepiness, confusion and occasionally hallucinations).  Yes I fall into the 10-29% category.  Delayed effects:  There is a slight risk of developing a blood cancer such as leukemia.  Yes even chemo therapy drugs can cause cancer down the road.  Ironic isn't it?
• Epirubicin - Breast cancer.  No I do not have breast cancer, or any symptoms of it.  Side effects:  Pain along the site where the medication was given   Nausea or vomiting.  Urine will appear red for 1-2 days (the Methylene Blue does the same thing only blue, and it over powers the pink or red) Low blood counts, both red and white.  Mouth sores.  Hair loss on the scalp or elsewhere on the body (the hair doesn't have a chance with these drugs I am taking),  Nausea and vomiting (see a trend here?).  Fatigue.  Amenorrhea (loss of menstrual cycle).  Darkening of the skin where previous radiation treatment has been given. (radiation recall).  Diarrhea, Infection,  Darkening of the nail beds, Conjunctivitis.  Problems with fertility. A serious but uncommon side effect of epirubicin can be interference with the pumping action of the heart. You can receive only up to a certain amount of epirubicin during your lifetime.

That is the complete list, well not counting the pills, compozene, and Zofran.  Anti nausea, it is really interesting all the anti nausea drugs they use now, and it does help.  As long as you take them at the first sign of queasiness, cause once it gets going, just get out the puke bucket.

A good place to go for drug information is www.chemocare.com .  Where I got most of my information.

The Ifosfamide is next, where troubles begin if there are any.  Last time on day 2 I got a ride to the hospital in an ambulance.

Hope this is better this time.

August 23rd, has come and gone. Chemo and Radiation ahead

Been meaning to getting around to doing this for awhile.  Trouble is, when I felt like expressing my thoughts (yes I have them on occasion) I wasn't near my laptop, and when I could have done it, I really didn't feel like sitting down and making my brain work.  (Yes I have a brain, they did a couple of CT scans to prove it!)  I so wish I could be one of those witty, inspired, dedicated to weekly posts, but I am not.  I suffer from "Shiny Metal Object Syndrome", other wise known as ADHD, oh sorry, got side tracked again.  :D

This surgery was the easiest of all of them.  Tuesday I went in to have the mass removed from under the right clavicle, in between the pectoral muscle, and the port I had for chemo was removed, it wasn't working anyway and they wouldn't be able to use it.  Wednesday my doctor let me go home.  I even asked him if I could go back to work part time on Thursday, but he said no I had to wait till after my follow up appointment, which was the following Monday, so I was back to work on Tuesday.  A bit achy, but otherwise functioning fairly well.

When I went in for my follow up, I got my hug from Dr. Flynn, love him and his staff.  Such wonderful, personable people.

Any way, first thing I asked was, did you get good margins?  Let me explain.  Most tumors are in cased in a very thin membrane, and the surgeon tries to remove a margin of healthy tissue around the tumor to make sure the membrane isn't damaged.  If it is damaged there is a possibility of microscopic cancer cells that are still there and the cancer will come back.  (No that isn't what happened in my case, in 2003 they got good margins by removing my left hamstring, hell the damn tumor was attached to it!)  I just happen to be one of those lucky folks that have it reoccur, and this year I was even luckier to have it decide to pop up in four different spots in my body, which does happen.

He did get good  margins.  BUT and here is the but, the pathology report says that in the 12:00 position of the mass the membrane was damaged.  Now remember we are talking about something that is extremely thin, and for the human eye to see it near impossible I would think.

Dr. Flynn explained to me that when he took out the mass, he removed a small portion of the pectoral muscle, along with a few branches of the nerve that it was attached to.  The nerve just so happens to be the nerve that controls my right arm.  He felt certain he got good margins, he even took a few branches of the nerve to be sure, and yes I can tell they are gone, luckily the motor skill they control does not bother me, and the other muscles are learning to help compensate.

The membrane could have been damaged at the lab, or the margin was there in the first place.  It isn't Dr. Flynn's fault, come on, this man is an amazing surgeon!  He removed part of my intestine and I don't use a bag to crap in!

So to err on the side of caution, I need to under go intensive radiation on the area the mass was in as well as more chemo therapy, which means I will have another port put in.  (When they take it out it will be the third port in my collection!)

The eighth I see the Radiation Oncologist, Dr. Chinalt, and on the 13th I see my Chemo Therapy Oncologist Dr. Vaughn, they'll give me my schedule, and what drugs will be used.  Dr. Flynn will put in another port and I'll start.

That in a nut shell is what is going on.   Think I'll go read a book, hmm, maybe go to Starbucks and sit around.  It is really going to suck having the colder weather here, I've come to enjoy sitting out on the deck or at Starbucks to relax and read.  Oh well, that is a topic for another time. Talk to you all later!!