Adventure since April - Or What I've been Doing with My Life :D

Wow. It has been awhile since I've posted anything. Sorry about that. I am a terrible poster/blogger.

Some of this maybe a recap, but I figured I'd start where things started to get "interesting".

Back in April the CT scan showed my small intestine folding back into itself creating a blockage, along with three tumors.

The doctor calls and tells me to get to the ER at Mary Washington. OK, so I go.

Apparently they already told the ER I was coming in because I was taken right away without the usual paper trail. You guessed it, I was admitted. Surgery was scheduled for Sunday. I believe I was admitted Friday. Now this was April, and the quarantine/isolation was in full swing. No elective surgeries, but I had one scheduled, made me think maybe this is serious. There were no visitors allowed at the hospital too.

They couldn't visit but they still stopped to let me know.

They got the blockage, along with the three tumors, apparently they were close to the blockage. I was left with the minimal length of small intestine you can survive with, and an ileostomy bag. Which for the record I still hate, and want to get reversed.

They kept me for two weeks? Maybe two and a half, made sure I could deal with the bag, and then let me go home.

After being home for a few days I started to feel like my old self, and started cooking, picking up the usual. I was starting to adjust to my "new" normal. Even was driving!

That lasted three weeks to the day of surgery. After losing a game of Catan to Liz, I felt tired. 9 PM seems to be a good time to go to bed anymore. They say you need less time sleeping the older you get. My hinny! I need more!

As I walked down the hall to my room I got a sudden sharp pain in the left side of my lower abdomen. Sharp, stabbing pain. I'm thinking I'll lay down and breathe through the pain. Yeah, right. Half an hour later I let Jim know I had to go to the ER.

Well, I couldn't walk because of the pain, and I would have had to go down two sets of stairs to get to the car. So 911 was called and the Stafford County EMTs showed up. They actually are able to "walk" the gurney down the stairs. They didn't carry me, the legs of the gurney extended and they "adjusted" as we went down the stairs.

I was admitted through the ER. My blood pressure was staying in the 90s so they couldn't give me anything for the pain. Once it hit 100/65 the nurse wasted no time giving me pain meds. You have no idea how grateful I was.

CT scan was done, I developed ulcers in my small intestine. They kept me and had me on all kinds of IVs. One was nutrition, another fluids, two others antibiotics. They had so many IVs in me, not only did they use my port, but had a pic line put in too! Which by the was took the doctor TWO tries to get in.

The ulcers healed, then something else "went bad", and we'd treat that. One episode the issue with the Vena Cava narrowing caused my neck to swell up do bad that I literally had no neck. I couldn't swallow water. I would choke on it. They gave me "super" steroids and the swelling came down, took a bit to get over choking on water. Then something else went. And they would start trying to fix it.

They were dealing with changing out IVs, my poor right arm was being stuck for the millionth time for blood, there was the nurse, assistant, doctors, vampire with a needle, and someone else in the room.

I was feeling weak, ill, crowded. I finally said stop. Enough. Just let me go. I was in bad shape and I knew it. But I was tired of everything, it all got too much for me. I kept saying "I am done, no more treatment, no more chemo, I am done".

Magically everything stopped. Blissful silence! The needle stopped poking my arm. I signed a DNR, they took all the IVs out. It felt like heaven. My poor left arm was so full of fluid that it was swollen and actually leaking through the pores! I was in really bad shape. I could barely walk two steps.

They got the Hospice folks in touch with Jim, and worked out getting a hospital bed, commode, medication, walker, oxygen and whatever else they thought necessary for me to be at home. Jim, Liz and Jasmine rearranged the bedrooms and house for the deliveries.

I got to go home in an ambulance. I've ridden more in them this year than I ever cared to. I was really worried about going home. Let's face it, I couldn't walk, if I took two steps I needed someone to lean on. I was worried that they would tell Jim to come and get me, and then he'd have to figure out how to get me up the stairs. But that was a worry I didn't need to concern myself with.

Once I got home they used the same type of gurney to "walk" me up the stairs and into my bedroom. I was worried that they would need me to get up and move myself to my new bed, but they said I was so tiny that they could lift me on the sheet. And they did.

It felt wonderful to be home. I felt tired. Sick, and emotionally exhausted. Oh, I started all this at 109 pounds. By the time I got back home I was down to 77 pounds.

My blood pressure stayed in the 80s. I was dizzy moving my head. I didn't want to eat or drink, I just wanted to sleep.

Hospice nurses came in, I was put on meds to help stimulate my hunger, one to help my sleep.

Jim, Liz, Jasmine and my sister Addie, took care of me. Made sure I got fed, made it to the commode, changed my bag, I was a mess those first few weeks.

Then slowly I started getting around with the walker, still dizzy, but making it out of the bedroom on occasion. Then it got to be more time out. Even had made a couple of trips as a passenger in the car. Right now I get around pretty good. No walker, I just take it slow. I spend a good part of the day at the kitchen island reading and surfing. Not to mention the naps I take.

I've come a long way, but it has taken close to three months to get where I am right now. It will be three months I've been home at the end of August.

I was talking to my nurse the last time she visited. She is amazed at how well I am doing. She told me when she first met me she didn't think I had two weeks left. I was that bad. Jim, Liz, and Jasmine didn't think I had long either. Shows you what being home can do for you.

Now I am trying to gain weight, adjusting to the lower blood pressure, building up strength. Just trying to get better so maybe I can drive again and maybe even get the ileostomy reversed. But that will take time. It took three months to get where I am, so I know I need to work on my patience.

And now you are up to date!

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.

The Most Asked Question - How do you do it?

I'm not sure that today is the best day to be writing this; but the words are rolling around in my head and I can get on the laptop to put them into "print."  The reason I say that is I am not in the best of head spaces at the moment, but maybe that is not so bad.  It means a glimpse into the other side.

I don't know how I do it.  Part of it is guilt.  Does that surprise you?  Yes guilt.  I feel that I would be abandoning the people I love.  Abandoning my son and daughter, my sisters, my friends.  I feel the guilt because I can imagine the sadness that my death would bring them.  I do not want people I love to feel sad because of me.

Here is the other side of the guilt.  I feel guilty for still being around when so many that have been diagnosed after me had passed on.  Survivor's guilt they call it.  It sucks.  I've lost too many people to cancer.  Waiting for it to take me is like waiting for the other shoe to drop.

How do I do it?  I don't know.  I am tired.  I  may have mentioned it before in a post.  But I am tired of cancer.

Once was enough, 2003 was more than enough, but no for some reason I drew the lucky number in the cancer lottery.  2011 was awful.  I lost 2/3 of my right lung that year, and part of my intestines.  Spent three quarters of the year doing chemo, surgery, and being hospitalized.  Even lost a portion of my right pectoral muscle that year.  That was the year the earthquake hit Virginia.  I was in the hospital when it hit.  Then 2013, 2014, twice in 2016.

The first time in 2016 was May.  Tumor in the lung showed up.  Surgery, they got good margins, no chemo.  Then again in November.  I started feeling like I couldn't breath because of bronchitis or walking pneumonia.  Finally went to the ER.  Boy was I wrong.  Surgery was scheduled right before Christmas.  I thought they would just go in remove the tumors, but no, all they could do was drain the lung and debulk the tumors.  They are in my left lung, on the sack of the heart, in the lymph nodes, on the Vena Cava, and aorta.  Surgery really isn't an option anymore.

So yeah, I am tired.  I am tired of the trips to the doctor's office and his smiling face, telling me how great I am doing even though they really can't do anything for the cancer other than try to keep it from spreading, which really has been proven fruitless.  Eight months on a chemo and it spreads.  Since January 2017 I have been on three different chemo drugs.

I am tired of the blood draws, the CT scans, waiting for the reports.  I am tired of them trying to make everything sound so up.  Just be straight with me.  Did it spread?  Yes or no?  What is the next drug?  Just tell me.

Right now they are trying to give me quality of life rather than quantity.

The chemo I am on, Votrient, is the easiest chemo I've been on.  So far my side effects have been nausea, some fatigue, some shortness of breath, and my hair changing from dark brown to varying shades of silver and grey.  Salt and pepper.

I am tired of having to remember to take poison every morning.  800 mg of it.  Yeah, my breakfast is 800 mg of Votrient and water.  I have to wait about 15 minutes before I can have my first cup of coffee.

I am tired of feeling weak.  The Yolandis that I was on caused major breathing issues, so my physical activity was limited.  Kind of hard to want to do something physical when you can't breath.  Now on the Votrient the breathing issues are still there, but improved 100%.  I need to start working out to get into better shape, but I need motivation.

I am tired of feeling like I am a drain on my family and friends.

I am tired of worrying about co payments, taking meds, fighting the bills that were supposed to be covered.  Tired of worrying about gap insurance now I am on Medicare.

Did you know that insurance companies can pick and choose the areas (counties) they want to cover?  They don't have to offer gap insurance to everyone?  If I were 65 I'd have plans available.  Since I am not there is only one plan for people under 65 on disability, and they don't cover my area.  Medicaid is out because they said I am $200 over their cap on qualifying.  So now I have the 20% to cover that Medicare doesn't.  Grateful they cover 80% of the doctor's and hospital, but, yeah, I'm tired of worrying about that.

I am so tired of needles and blood draws, and reading then rereading the reports.

I am tired of feeling like if I show any weakness people will think less of me.  I am tired of feeling like I whine.

My daughter Jasmine, my dog Sasha, me, my dog Bailey

I am tired of the isolation.  I feel alone.  The days are all filled with the same thing.  I try to motivate, but it is really hard some days.  Yes, there are days I just go back to bed.  There are some days that I don't want to get up, but my dogs remind me that they are my responsibility and I have to take care of them because they love me.

Don't get me wrong, I don't wallow in pity.  I am working on socializing more.  I volunteer twice a week at Mary Washington.  One day for three hours we sew cough pillows for patients.  And the other day I volunteer I work in the Gift Shop.  I also go to "Meet up" things, there is a group of single people 50 and over that meet up and I try to go once a month.  I need to make more friends locally to have coffee with and talk to.  Like I said, I am working on it.

I am so tired of feeling like I am in white water rapids being rushed down the river with no hope.

How do I do it?  I don't know.  I journal.  Everyday.  Even if all I do is write down that I feel like crap.  I try to write something down every day to get it out.

I write this blog, yes, I don't write often, and it may not get read much, but with it I am trying to show my inner feelings and frustrations, so it is an outlet.  I actually end up feeling better by the time it is published.

How do I do it?  In my heart I know that my family and friends are there.

An update on the Lowe's job.  I emailed my supervisor about my concerns when it came to the customer service, and my inability to lift the 5 gallon buckets, and my limit to 15 hours a week.  Along with the concern of being scheduled three 8 hour days in a row.  (Down stocking and fronting on a four hour shift exhausted me, and I was honest with them in the interview I am not in shape, and I need to work on stamina).  After not hearing any response for five days, I figured that maybe I should work on getting in better shape before I try working there.  So I resigned.  I really didn't feel comfortable my concerns were not address.

I haven't given up looking for a part time job either.  There is something out there that can help me financially, physically and yes, mentally.

Thanks for reading this, I am in a better head space now.  Time to go have some breakfast and vacuum.

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.

Being Termnal or Having an Expiration Date

Many people are uncomfortable with the fact I am open with the fact I have an expiration date.  That is unfortunate.  They seem to miss the in-between.

What do I mean in-between?  The in-between time from finding out you are going to die with an approximate time frame to the point where you actually check out of this life.

I guess people don't know what to expect.  I think they seem to expect me to be weak, and feeble.   When they see me, they see someone who looks healthy.  Ok, well maybe a bit anorexic (down to 105 pounds) yeah I do have some dark circles under my eyes.

Sometimes I get the feeling they want to ask questions, but don't want to offend or are afraid of the answers.

Personally I wish people would ask questions.  Questions make you think, and if you think you can solve things.

It is funny, cancer for me over the years is just a part of life. I always knew that cancer would be what will end my life. I have been beating the odds since 2003. I am good with my mortality. Came to terms with that years and years ago.

June 29th my doctor and I had a talk. The antibody chemo (first person in the area to get it) seemed to keep the sarcoma on the upper aorta in check, and the one on the lung. But, I grew a new tumor in the colon, and surgery isn't an option.

My reaction was, "well, damn, that means I am still stuck with all that excess skin on my stomach!!"  I saw my surgeon when the tumor came up on the CT scan, and told him if he and the oncologist agree on surgery, he better damn well do something about the excess skin, because that scar that runs down the middle of my body from the sternum to the pelvic bone allows it to sag on two side.  (I have a multi pack that is saggy).

We will continued the Lavutro treatment (antibody)until the week of September 12. Then we go to the Yondelis (trabectedin) chemo. Another new one!! It is made from the sea sponge.

I asked about longevity  (I think I told you all this, but I am not sure). Optimistically 12 to 18 months. We are doing treatments that are less aggressive. I want to enjoy life, and have no desire to be hospitalized every other week for blood count.

Like I said, I am good with it. I won't give up. But accept the strong possibility. The thing I have the hardest time with? Leaving my children. Yes they are adults, but I would prefer them not having to deal with it.

I actually feel guilty because I don't want them grieving or feeling sad because I am gone.  I know many people think I am being a bit silly or a worry wart. But in reality, what one thing that makes life mean the most to me is seeing my children grow as humans.  Seeing them happy. 

The other is random acts of kindness, but you have to do them anonymously.  Like the other day, I treated myself to dinner out.  Local greasy spoon.  Two fresh faced Marines, you can just tell they were fresh out of training, and there was an older couple.  Told the waitress to give me their checks, and tell them someone said pay it forward if and when they can.  Do not tell them who.  I finished my liver and onions (yes, I like it, but lately I crave it) and the looks of astonishment on the faces were priceless.  Or sending items or funds to rescues anonymously.  Or at the grocery store, putting money toward someone's groceries, or walking into the little food band and dropping off bags, then walking out without a word.  I like doing that.  I like seeing the faces (when I can) of people who are astounded that kindness still exists in this world. God knows we humans need to learn to be nicer to one another.

But in the mean time, I need to win the lottery so I can do lots of random acts of helping those less fortunate, camp across the USA, and get some bucket list things done. But I want my children to go with me and build memories.

Stepping Out of Your Comfort Zone

I think I explained before that I am an introvert with extrovert tendencies.  Well, I pretend to have extrovert tendencies.

To be honest, lots of things make me nervous as hell.  Mainly has to do with people, going into new situations, and the such.  I am terrified of looking like an imbecile.   Seriously, don't laugh.

Working out I am self conscious as hell.  No, it isn't a body image thing, and yes I started working out (maybe strengthening my body will help defer the expiration).  I work through my exercises thinking, well not thinking really, I try to block everyone and everything out.  Am I doing this right?  Of course I am.  But no one showed me, well I followed the pictures on the machine.

Oh man, when I go into a setting having to deal with a group of people, yeah, I just want to turn around and leave.  Again, I don't like feeling like an imbecile.  Even if I have a good idea of whatever it is, I get antsy.  It is worse when I am rusty on it.  Shit, then I think why the hell did I sign up for this in the first place.

You are thinking something like this "But she isn't afraid of cancer and dying?"  To answer you, no I am not.  I know my body, the signals, how it reacts.  Death is just a transition.  But dealing with new people on a one to one, or going into a group to deal with them alone?  I am quaking in my boots.

When I went to Bali a few years ago.  My first trip out of the country, alone.  Didn't bother me in the least.  I have no idea why.  Camping with my dogs, no problem.  I function very well independently.  Public stuff, not so much.

Now what brought this up again?  The following video.  I need to be more like that young man.  Talk about stepping out of your comfort zone and facing your fears!!  Bear with me and watch.  Once you do, you will understand.

After you watch the video, shut off the phone, computer, the whatever, and go outside, live life, laugh and maybe face one of your fears.  After chemo, I am going to.

This young man faces his fears  Click the link to see.  He is my new hero.

The story

My sister asked to write my story.  It isn’t an easy straight forward story – there are the major happenings, then the little stories that layer in between that makes the larger event bearable.  I will try; but in trying stories of love and support, will be there between the lines. They too are important.  I am so grateful to those people who have helped and continue to help me.  I apologize for not detailing your stories.  I am limited to 7500 characters.

You have cancer. That is something no one wants to hear one time.  I have been told that six times.  Sarcoma, rare.  Lucky me. The head of the Pathology Department at the Mayo Clinic – asked to keep my biopsy slides to use in his teaching.  Is it weird that made me happy?  (My cells are helping to teach!) 

I hate January.  Seriously, I do.  It seems that every time I was “officially” told I had cancer in January.  Since January 2003 I have been beating the odds.  At the Cleveland Clinic I was told that the cancer could kill me, and if I survived, there was a 1 in 500 chance of it returning.  I laughed and said, “Well, that means my chances of it returning are better than winning the lottery!”.  Let me explain, I have a warped sense of humor, always have.  If it has to do with me it is open game to me.  If you can’t laugh at yourself, who can you laugh at?  I actually have laughed plenty during this entire venture with cancer. 

Since January 2003 I have lost my left hamstring, right latissimus muscle, lower two thirds of the right lung, half my liver, a third of the pancreas, duodenum, gall bladder, part of the right pectoral muscle, a scoop of the right quad, several feet of lower intestine, a couple feet of small intestine, part of my stomach, and had several skin grafts (By the way when they fail you smell like a corpse.)

January 2003 my journey began at the Cleveland Clinic.  Biopsies, the doctor “officially” telling me I had cancer. 

I went through the MAID chemo and radiation.  Very difficult chemo.  Chemo brain is very real.

In 2008, I was offered a job in Virginia, as a contractor working on a Marine Base.  I passed the magic five-year mark, and time for change.  I turned over the shelter I founded to a wonderful group of people, and moved.  (For the record, I really loved my job.  The work was meh, but the people were awesome!  Loved working with Marines. They have warped sense of humors too.

Divorce in 2010, cancer returned in 2011.  Right lung, lower and upper intestine and the right pectoral muscle. I now have a basis for the worst pain you have ever felt in your life.  It is either having your abdomen sliced open from under your rib cage to the pelvic bone, or having your sternum cracked open.  Either way, it rates a 10.

2013 -  Whipple surgery was done. A Whipple is a surgery that entailed removing the following:  part of  my stomach, duodenum, part of the pancreas, part of the liver, the gall bladder, and several feet of intestine. Basically, they rearranged my digestive system. I always have Zofran because eating nauseates me.

2014 -  Right thigh. Attached to the quad. This one was actually one I laugh about.  No chemo this time – the basis for this decision is the fact it nearly killed me last time.  A day surgery, they went in scooped the tumor out of the leg, discharged by noon then I went to lunch with my son at a local Indian restaurant. Surgery was a Tuesday, they told me I had to take one day off work. I took Wednesday off, and I was bored.  I was back at work on Thursday.

March 2016.  The left lung, my GOOD lung. It was small. No chemo if Doc got good margins. Doc got good margins. I had surgery on a Monday. I took Monday, Tuesday off and you back to work full time Wednesday.

I actually thought that the worst of 2016 was done.  It was a bad year.  During the spring the company I worked for told us that they were not going to bid the contract they had with the Marine base I worked on.   I started looking for a job.  The contract ended at the end of July.  Job hunting started in earnest.  I picked up a couple of small part time jobs.  I need a job with good health insurance.  Right now, I am unemployed; but I am keeping the COBRA insurance paid for!  COBRA was cheaper than Obama Care, and better coverage!

November 2016, I started feeling like an elephant was sitting on my chest. December, I was in the ER, hospitalized, they thought they saw fluid in the lung they tried to drain it. It didn’t work. Surgery was scheduled for December 18. They  discovered pockets of fluid on the lung and surrounding the heart hiding tumors. They removed the fluid and debulked the tumors.

January 2017, a Saturday at 8:00 AM. I got a call from the doctor with the results. The cancer was back, and it was in fatty tissue surrounding the heart, actually it is on the upper aorta, and lymph nodes. My oncologist got the insurance company to approve the new anti-body treatment that was rushed through.  I am the first one in the area to get the treatment.  It was rushed through FDA in October of 2016.  February, I started LARTRUVO and doxorubisin.  Weird hair loss, fatigue, nausea, shortness of breath, side effects. 

I finished the original six cycles.  I had a PET scan done, the cancer on the upper aorta and lung seem to be stable.  However, a new tumor developed in the colon, while going through chemo.

Surgery isn’t an option unless it becomes a blockage.  It is too dangerous.  I’ll keep doing the Lartruvo for the next three months, along with CT scans to see how the colon tumor reacts.  If there is no reaction or growth, we will try the Yolandis.  Yolandis is derived from the sea sponge.  I have a feeling that Doc is going to have to convince the insurance company to pay for it.

June 29th was the infamous talk.  Optimistically my life span is expected to be 12 to 18 months.  My doctors (oncologist and surgeon) are encouraging my to do my bucket list.  (Yeah, that cost money and I have to pay for my insurance, and I am still unemployed – not for lack of trying.  Yes, I am still looking for a job.)

I always knew that cancer would be my end.  Just not ready for it.  Going to keep fighting.  But as the doctor and I talked, we both came to the conclusion I will fight, but I do not want to do the really harsh chemotherapies.  The quality of life is an issue for me.  Back and forth to the hospital.  Feeling half dead, not wanting to enjoy the simply joy of sitting on the deck.  I’ll fight, but quality of life really is important.

I want to see friends, make memories with my two children.  Get some bucket list things done – things drive across the USA and camp at the National Parks with my girls (dogs) in a 4 door Jeep Willey (my 2004 Malibu with 160,000 miles wouldn’t handle it.) Visit friends while driving the country. I could keep all my camping equipment in it and just randomly tell my dogs to jump in and lets go to the next National Park. See Stonehenge and touch it.  See places my roots are from.

I want to make a difference to people as I do a bucket list – lots of random acts of kindness anonymously.  (I do those now, but would love to do more) Make sure all the bills are paid, make sure final expenses are covered.  No life insurance.  Nothing to sell.

I don’t know how I’ll do it, but somehow, I’ll find a way, I hope.

Dance Six continues.....

Well today was the second treatment with the new antibody chemo drug - Lartuvo by Eli Lilly.   It was recently approved by the FDA, it was fast tracked.  Guess who is the first one in the area to use it?  Yep. You guessed.

I have to be honest, this is the weirdest chemo schedule I have ever been on.  Once a week.  Every other week is it different too.  Thursday is my chemo day.  Wednesdays are meet with the doctor and blood levels.

So last week, this was the list of drugs I got:
Decadron (corticosteroid hormone), Benadryl (yep through the IV), Aloxi (anti-nausea drug on steroids), Emend (another anti-nausea on steroids), Latruvo (antibody chemo drug), Doxil (nasty chemo drug), and Neulasta OBI (suppose to support immune system).  Five and one half hours. Long day.  Oh, and after the Benadryl you do get sleepy.

The two drugs with the most side effects are the Latruvo, and Doxil.  Head aches, nausea, diarrhea, constipation, muscle aches, chills, immune system crash, fatigue, oh yeah and hair loss.

Side effects I have been having, fatigue, head ache, the hair is going, nausea, the taste of food is going too.  Body aches too.  Basically for about four or five days after I feel like I have a bad case of the flu. I still get up every day and go to work. 

Oh, it just dawned on me, I work SEVEN (7) days a week.  And from working that much (20-30 hours at one job, 10 to 14 hours at the other) and I bring home about $800 to $900 a month net.  Life is interesting right now.

Ok, back to the chemo.  Today's treatment was the Lartruvo.  Did you know they fly in the medications the day before your treatment?  I was supposed to get chemo yesterday, but when I was about ten (10) minutes from the office I got a call, the plane the drugs were on had mechanical problems.  They didn't get here.  So they rescheduled me for today.  The total time I was there -  a little over two hours.  Right now I do feel tired and nauseated.

I'll admit.  This time I am a bit concerned about the cancer.  I mean, it is Stage IV (been there, done that several times) but it is on the heart and inoperable.  All the other times they could operate.  Even a couple they operated, and since they got really good margins, no chemo.

So why am I a bit concerned?  Well, if this chemo doesn't work, there will be another (new treatment just approved too) and if it doesn't work, there is another, and another.  I am concerned about having to continue chemo so long it exhausts me.  How many times will I have the strength to go through it?  When I am too tired, how do I face my family and friends?  Look, I am not giving up, but I have no idea what will happen in the future.

Oh, before I go, any woman going through any type of cancer should check out Cleaningforareason.org - they are a nationwide group that has volunteers that will come in and do a general cleaning to help you out.  If they have someone in your area, they will connect you.  There is a limit to how many cleanings, four (4) I think, don't quote me.  But even that helps.

If you don't need cleaning and want to help, they take donations, and may even be able to use your help. 

Time to feed the girls, and take a nap.  I really feel beat this time. 

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 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!!