2020 The Year I want to Redo

It has been awhile since I have done a post to publish.  The last one I did is still a draft and will not see the light of day. I tended to talk in circles.

This one circles or no, I'll publish.

I'll be the first to admit that when they were talking about Covid-19 back in January and February I wasn't worried.  Concerned yes, worried no.  I figured it would have been on the  spectrum of the Zeka virus.

Then comes the shit storm of March.  I had a CT scan done where they found three tumors and a potential blockages in the small intestine.

Covid-19 was taking over and things were starting to get locked down.  Or self quarantining if you will.

Then I get a call Apri17.  Get to the ER at Mary Washington.  Thank God that Jim and Liz were on their way here and almost here.

In the meantime the world is locking down borders, running out of PPE supplies. Hobby sewers and professional all turn to making masks for the hospitals.  Hospitals are making employees sign for their homemade mask.

Ok, now I am in the hospital, Doctor says Monday we are doing surgery on you.  Comes back later and says, no, we are doing surgery on you Sunday.  I'll have my "A" team here.  Oh lucky me.

Doc explains they are going in to remove the blockage of the small intestine.  If they can get some of the tumors that would be a bonus.  But, and this is a HUGE but. I may end up with an ileostomy bag.  Temporarily.  Depending on how healthy the small intestine is.

Well, I wake up to find out that they were able to get the blockage, and all three of the tumors.  The tumors were all located near the blockage.  I am left with two things.  A small intestine that is the smallest it can possibly be and live, and an ileostomy bag.

The one thing I kept saying I don't want.  A bag that I have to take care of because I constantly shit it in.  To say I was/am horrified puts it mildly.  I am horrified and embarrassed.

They teach me how to change the bag and empty it.  They can't teach me how to deal with the leaks, the seal letting go, shit running down my leg, the bag letting go during the middle of the night,  No, these are all things I have to learn on my own. I have to learn to deal with and accept.  Besides, it is only temporary.

They wouldn't release me until I was sure of changing out my bag.  Every other day I had a nurse that specialized in bags show me and watch me change the bag.

Ten days later I am home, building back up my strength and building my confidence with the bag.  I was getting my strength back, walking, eating, showering.  Almost a "normal" life.  I even got to drive.

In the meantime, the Covid virus is still in the head lines, people are getting antsy to get out and try to have a life beyond quarentine.  Governors are talking about lessening restrictions in phases.

May 17.  I remember looking at the calendar and thinking only 4 more weeks.  I can deal with this for four more weeks.  Ate well that day, and played Catan with Jim and Liz.  (I lost) but I felt good.  Decided to go to bed about 9, got a sudden pain in the lower left absomen.  I figured it was nothing and that I'd lay down and breath through it.  Boy was I wrong.

The pain kept intensifying with no breaks.  After about thirty minutes, I tapped out to the pain.  I texted Jim saying I had to go to the ER, I couldn't take the pain anymore.

Getting me to the ER involved an ambulance ride, luckily they had a "chair" they could put me in to handle all the stairs.  Off to Mary Washington ER.  Once there I got checked in, and had to wait.  When they finally got me in back they couldn't give me anything for the pain because my blood pressure was so low.  But in the meantime, a CT scan was done.

Air in the small intestine, and ulcers.  So they took a non surgical approach to the ulcer in the intestine.  I had so many IVs going they finally put in a pik line (took two tries).  I had IVs on the pik line, attached to my port, plus and IV in my right arm and hand.

Everything was going in through the left arm.  It swelled up and started leaking through the skin.  My vena cava is reduced in size, so my system is working on rerouting my veins.  Lots of little veins to take over.  Well, that produced a huge swelling of my neck.  In fact I had no neck and couldn't swallow.  Two doses of super steroids helped with the swelling and swallowing issue.

In the meantime they do another CT of the instestine, they discover cycsts.  Off to get them either cut out or at least drained.  They could only drain them.  More antibiotics.  While that is all happening they do an ultra sound of the neck and left arm.  Turn out I have several blood clots.

They put me on blood thinner and draw blood every four hours.  They can't use the left are for blood because of the pik line and swelling, so they used the right arm.  My entire arm turned black and blue.  Never mind the right arm is swelling too.  Just not leaking like the left.  Looking at my right arm today you would swear I was a junkie there are so many needle marks on my arm.

It seemed every time they "fixed" something, there was something else to take its place.

I finally said enough. No more.  No more chemo, no more trying to use poison to make it better.  I was feeling weaker and weaker every time something was done.  No more surgeries, even if that means I have to keep the bag.  I have had enough.

I am doing hospice.  At least at home I can try to get stronger.  And no more blood draws.  Enough is enough.

My family understands why I decided what I did.  In fact I am stronger today than when I came home a week ago.  Still weak, but stronger.

I've been technically fighting cancer since 2003.  Although I did have seven years of no evidence of desease.  I am tired of taking poison everyday.  I am tired of the anxiety over scans and waiting to hear what the doctors have to say.  I am just tired.

I'll take time with my family and friends and what peace there is left in this world for me.

What was going on in the world while this was happening? Riots, protests over a wrongful death.  Demands for justice.

Anyway you slice it, since March of 2020 this year turned to shit for everyone.

Please be kind to your neighbors, family, friends and strangers.  Your small kindness can make someone's day better.

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.

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. 

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.

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.

The Third Time Around

Well, I was hoping to get at least a five year break in between bouts of caner, but it seems this time I only get a year. 

I have accepted the fact I will never be cancer free, I am okay with that, all I want is more than one year in between.  I'd of liked to be in better physical shape.  Year one after the huge mess was to be rest, eat, work, get a tattoo, and nothing other than enjoying life, notice I didn't mention working out?  Well I started to and figured I needed to rest from that too.

January 21 I started to feel a little bloated.  Like I was pregnant again and the kid was pushing his feet up against my ribs.  (No I am not pregnant, you have to have sex to get that way.)  The next day the bloating settled into a pain along the right side of the stomach, controllable with ibuprofen, the next day it was worse.  Thursday at 3AM I am texting my housemate, Michelle, can you bring me to the ER?

Three hours later and a CT scan later, the ER doctor came in put my bag on the floor and looked at me with the saddest face.  I knew then.  He told me to make an appointment with my oncologist ASAP.

I looked at him and laughed.  Okay, I was hoping that I wouldn't be seeing him regularly for awhile, and I was really hoping that it would be appendicitis.  Ah well, no such luck.

So the following Monday I am off to see Dr. Vaughn.  Just to hear "You are complicated, I am going to bring your case in front of the Cancer Board Wednesday to come up with a game plan."  Let me tell you something, no woman wants to hear she is complicated from a man, especially so if the man happens to be her Oncologist.

I had to go for a port study because my port isn't operating properly, you can't draw blood but you can push fluid. Turns out end of the tube is right up against the heart wall, so they cannot draw blood. Every time they try to draw blood the suction pulls the tube to the wall.  They can push fluid.  So my blood draws are through my arms.  I hate that.  I am a hard blood draw, tiny veins, lots of scarring, they roll and disappear. 

So thanks to the ER visit, and the visit with the doc and the port study, I have met my out of pocket expenses already.  The deductible is a killer, but I'll deal with that.

So the kibosh has been put on my wonderful plans for 2013.  What plans??  Well here is a short list:

1. Dating. I figured that I would start dating, hey a year of getting the clean bill of health from the doctors.

2. Two maybe three tattoos, already have the design in the head, and it all depends on cost.

Well, the third and fourth I am not going to mention.


Get your damn minds out of the gutter.  If you are a friend of mine it is in the gutter by nature.

The treatment is going to be 6 cycles, 5days per cycle, each cycle is 6 hours long.  The up side is the fact I will be going through one cycle a month, so every fourth week is chemo.  Hopefully this helps with the side effects, but with me you never know.  Feeling the nausea and head ached already, and talk about water weight gain, my face is puffy.  And this is day two!!

I refuse to go through this with a puffy face a sausage fingers, just refuse, they will have to do something about it.  And soon.

I am home for the night, started this during chemo.  Feeling like nap time, but that will translate into most of the night, and it is only 15:30, 3:30 for those who don't think 24 hour clock.

The up side, no radiation.  The tumor is too near vital organs that I need and the radiation would do more harm than good.

Someone said maybe the third time is the charm, maybe the third time will be the last time I have to kick cancer to the curb and I can live life without that shadow hanging over my head.  I can only wish, but as my Dad would say "Wish in one hand, shit in the other" translation, don't waste your life on wishes, actions make things happen.

The optimistic/pessimist in me is how I am dealing with it.  Hope for the best/expect the worst.  The best would be the cancer is gone forever, period.  The worst would be it is gone for a period of time.  Hopefully longer than a year.  Either way, it is a pretty damn good outlook.

I do need to do a will.  I think I will work on it tomorrow, and then get all those damn calls made to make sure the insurance, 401k, have the right beneficiaries and percentages.  Would be nice to have it in one place too.  Hey, better be prepared just in case. 

One side effect of this is about halfway through the chemo I start craving coffee.  Fresh brewed, plain old coffee with a bit of half and half.  Yesterday, I thought maybe Mocha from McDonald's because I don't like their coffee, yuck!!!! Tasted like sugar.  Got home pulled out the Cuisinart (out of Doughnut House Kcups) and made a cup of coffee from fresh ground beans, so tasty.  Then promptly went to bed at 6ish.  (I got home around 5).

Tonight I had to stop at the Navy Fed ATM, and right across the way is a Dunkin' Doughnuts.  So After the ATM, I drove over to the Dunkin' and got the Dunkin' Kcups (expensive little bastards) got home and brewed me a cup.  Ah perfection.

I think the chemo weeks are going to be tough, but as long as I have my Dunkin' Doughnuts Kcups I'll be alright. 

And with that let me leave you my gentle readers with this:  Coffee makes everything better, coffee understands.

 

Reflections on 2011

Well, it is 6 PM on New Year’s Eve, the dogs just finished their dinner, the house is very quiet, Jasmine is at work at the Log Cabin, Jim left to go out with some of his friends, Michelle and Evelyn went to church in their PJs.  OMG PJs!!

Here I sit, and have the urge to write.  But what to write about? I look back over the past year and I do not wish any of it changed.  Yes, it was a challenge; I think more of a challenge to those around me than to myself.

I have to admit, last New Year’s Eve I wasn’t even thinking that I’d be spending 2011 dealing with cancer and surgeries, hell, I was just hoping to get through the year with positive balance in my savings account.  (And yes I did that!  I have thirty-five cents in my savings account, isn’t much, but it is a positive!)

Last year I may have even thought I might have a date on New Year’s Eve, but life had something different in mind for me. 

Life doesn’t give you what you want, but it gives you what you need.  Sometimes I have to disagree with that statement. 

The reason being, a dear friend of mine lost her son in Afghanistan.  What mother needs that grief?  My heart breaks for her; she has faced the loss of her son with honor and dignity.  She has brought honor to his memory.  She is an incredibly awesome woman.

But when it comes to me, it seems that saying works.  The lessons it brings me aren’t always the easiest to take, and sometimes I wish that it would just bring me what I want (think winning lottery ticket and being a philanthropist).  But it is what it is.

In 2003 life brought me cancer, a time in my life when I really thought that the human race was comprised of two kinds of people, those who loved their pets and those who thought they were disposable, and those who would say what they thought you’d like to hear but not mean a word of it.  To be honest my heart was in a very dark place.

Back then it taught me that not everyone was like that, that there were people to genuinely care and wanted to help, and it taught me I was stronger than I ever thought I could be.

2011 I needed lessons again; at least life saw it that way.  But I don’t think I learned anything new, it just reaffirmed things I already knew.

I already knew I worked with the best bunch of people you could wish for, I mean how many people that YOU work with would shave their heads to show support and that they care?  Seriously.  You have no idea how that touched my heart.

My daughter chose to leave her life in California to be here with me, no one will know what that means to me, and I watched her grow as a woman.  She has been blossoming and becoming the woman and artist I always knew she was.

My son is working on his PHD.  And I am so proud of him, but nothing in the world can describe how I felt when he told me he was proud of me.  I don’t think anyone will ever understand how much that meant to me.

All of my friends with their cards and notes of support, letting me know that they were thinking of me, and my sister Carol with her bracelet campaign, and the notes and packages from Addie.

Yeah some of it was a bit rough, even gave the doctors a scare, but I survived it.  Got the scars to prove it.  Five surgeries this year.  Lost 2/3 of my right lung, two feet of intestine with two tumors, part of the right pectoral muscle and main nerve to the arm, but it was all worth it.  I am alive and I have a wonderful family and a great bunch of friends.

So, I may not be out to a fancy party with a date to ring in the New Year, but I am content in knowing that I have family and friends who love and are there for me.

Happy New Year everyone, May the New Year bring you health, happiness, prosperity and all that your heart desires.

Huh, maybe next year I'll have a date. ROTFLMAO!!

Day One, Cycle Five

Actually if my white count was better last Monday I would have been doing this post then, but since my white count wasn't where the doc felt comfortable giving me the chemo it got put off for a week.

On my "10" day appointment, (you go in the office for a visit with the Nurse Practitioner and blood count) my immune system was in the tank.  That surprised the Nurse Practitioner, since I felt great, had good color.  I was put on this antibiotic for ten days to give my system a bit of support.

Come to think of it, I am surprised a bit myself since a couple of the guys weren't feeling good at work.  But what ever, I still felt great and made it through the cycle without going to the hospital.

Oh yeah, one thing I did was make a batch of orange vanilla cupcakes with pale pink and blue butter cream and heart cut outs of white fondant for Debbie (she is a friend and FANTASTIC nurse at Mary Washington, 4th floor)  Yes, she is PREGGERS!!!  I hope it is a girl.  She'll have two wonderful big brothers, and a Daddy every boy fear.  :D

Anyway back to this mess.  So my original schedule would put my third and final cycle the week of December 26, but the office is closed on the 26th for the holiday.  Which means this may drag into 2012, which doesn't thrill me a whole lot, but it is a quick way to meet my out of pocket expenses and deductibles (still have the $40 an office visit copay). 

I don't know, I guess I was hoping to start the new year off without chemo, but it is what it is, and I may end up doing chemo the first week of the new year.  Hell of a way to start the New Year, but oh well.  Just remember Valentine's Day 2011 I was starting chemo, so it really isn't a big deal.

Oh, I just thought of something.  It would be a hoot to go to a New Year's Eve party bald.   You know, get all dressed up and put a polish on the chrome dome. 

Yes, no hair again, hell last Monday I was at work, bored and I ran my hand through my hair and came out with a bit of hair, then I started plucking my hair, got a little pile on my desk, looked at it and said "Ew, that is such a gross thing to do!"  Swept the pile of hair into the trash can, and a few minutes later started it all over again. 

It was like when you have a spot that is a bit tender when you touch it, but you can't help touching it.  You know you should just leave it alone, but you just can't stop yourself.  An OCD thing maybe.  Like when you have a scab and one day start to pick at it, you can't help yourself once you start and it is super hard to stop yourself.  Yes, I am off my rocker a bit.

I am stuck here at the ski lodge (Hematology Oncology and Associates where I go for chemo looks like a ski lodge)

This is what I get to sit next to in the lobby.  When you walk in it feels like you are going to register for your room at the ski lodge.

In the back where you get your chemo, there are huge windows over looking a wooded area, you expect to see a lift.

Beautiful place, if  you have to get chemo may as well be somewhere that is pleasant.

Speaking of, Doc couldn't make up his mind whether he was going to hospitalize me for my chemo or keep doing it as an out patient.  Since I did so well during Cycle One, I am staying as an outpatient.

Today is my longest day of the cycle.  I won't get out of here till about 3.  Day one of the cycle is the longest.  Tomorrow it will be shorter by 1/2 hour, and the same for Wednesday.

Have to decide when and where to get the Christmas Tree, and what weekend I'll do the power baking.  Not the weekend of the 17th/18th. 

Oh well, feels like nap time so I am going to take a nap. 

Ciao for now!

Two more weeks of Radiation, Port goes back in then Chemo

Yeah I know, been awhile.

Well, I have two, well, actually two and a half weeks of radiation left.  At a higher dose of radiation too. 

The skin in the area of radiation is a bit tender, feels drier, and looks redder and scratchy/dry.  What is the real pain in the butt is the fact that not only do I have the little "tattoo" dots, but they also mark around the  dots with Sharpie, black sharpie, and make an "x" on the center of the spot of radiation as well as draw a circle around it. 

Sounds funny doesn't it?  This wonderful technological treatment, has use of a black Sharpie marker to line up the area for treatment.  That really isn't so bad, but the fact that the damn marker rubs off on your clothes is a pain in the ass.

That stuff doesn't wash out, and I really don't have that many clothes that fit right now!  Beige, white bra's, the strap is turning black.  (Remember the area being radiated is under the right clavicle bone - collar bone).

Oh yeah, and the black circle they draw shows unless I am wearing a high neck shirt, even a modest scope neck makes it look like I drew lines on myself in Sharpie.  Seriously.  And yes, I catch people looking at the black lines.   They get all embarrassed when I say, yes, that is a black marker line.  My technicians like to draw circles and x's.  Of course they don't know I mean the radiation techs. Not the phone techs.

Get to see Doctor Flynn the 27th.  I can tell you already about the whole appointment, we'll discuss the up coming "procedure" - getting a new port put back in on the 4th of November.  How I am doing, which really is fine other than a bit of tenderness.  My ability to find great bargains.  (Found a Ralph Lauren purse at the Good Will for $0.83, yes eighty three cents, and a Prada - for real one - for $3.99).  He'll also tell me I will need to go for a CT scan of the main portion of my body to make sure the cancer is all at bay, and he will be a bit concerned about the tenderness in the abdominal area.  Then I'll go for blood tests, and what ever pre surgery thing I need to.  Get my port on the fourth and start chemo on the 7th.

Doctor Vaughn, oncologist, is going to try to give me less of a dose of the chemo meds this time around considering how I reacted last time.  He'd like to keep me out of the hospital.  If I don't react well, I'll end up having to be hospitalized for chemo treatments.  Four days in and a week out.  Not something I would look forward too, but I did that routine in 2003 and survived, so I can do it again if I have to.

The biggest thing I was worried about was a wedding cake I wanted to do for a gift for Kristen and John Q.  And it got done,  and they liked both the Bridal and Groom's cake.  I was worried about it when they said I had to do chemo again.  If they had started chemo first I wouldn't have been able to do it, but the doctors listened to me and my bitching about I really needed to do this and it meant a lot to me.  So I won.  :D

Any who, here are some pictures of my hobby.

Wedding Cake

Groom's Cake

Cupcakes for the Bride's Sister

Going Away Cake for Sgt. Dean

Baby Shower Cake for Debbie