QUITE an Adventure!

The visit to the pulmonolgist was interesting; I think he was really taken aback when I showed him the tumor photo in all its glorious color.  He couldn't believe I never had a symptom.  But I didn't.  We had absolutely NO idea I'd ever present with Esophageal Cancer.  And such an advanced case, ai chihuahua.

Dr. S checked my lungs, and told me to be sure to have the oncologist contact him.  You see, if you do the radiation, there is a possibility that I'll lose more lung fuction due to scarring.  I'm just below 40%, and able to get around, albeit rather slowly, and definitely not in a sustained manner.  If you just met me and I was seated, you would never guess I had lung disease, unless it was a bad asthma day and I was having a hard time getting a complete sentence out between breaths.

One of the things I learned in my last go-round with cancer is that you HAVE to have all the doctors communicating.  And you had best have doctors that appreciate each other.  Every one of the doctors I have on my team know the others, either by reputation, or personally, and each has the greatest respect for the other.  Of course, I can't stress enough that your primary care doc really needs to be the conduit for everything.  He ensures that everyone gets your records and understands the challenges inherent in underlying conditions, such as lung disease.

As my sister and I drove home from the pulmo, I told her if Mom was alive, she'd probably tell me that I was having QUITE the adventure.  Whenever Mom was going through something difficult, once it was over, she'd tell us, "well, I certainly have had quite the adventure."  Kind of like she'd just scaled Mt. Everest, or perhaps discovered life on Mars, but actually, if you think about it, it all really is an adventure, and like all good adventures, if you can survive it, you're stronger, smarter and happier.

Yep, it's been an adventure so far. :)

Record Breaking WEEK!

Whoa, tomorrow I have to go see my pulmonologist.  That means, I've seen more doctors this week than I normally do all year. Ai carumba!

My PC likes to be kept in the loop, since after all, that P *does* stand for PRIMARY, and he's a hell of a good guy to have in that role.  So, I brought him up to speed with the Oncologist visit and the Surgeon visit, and he said, "You really need to go see Dr. S (pulmo) before that port surgery."  Oh, and that has finally been scheduled for the 14th, next Thursday.

Oh, fine, then... let me make another call.  Well, the Pulmonary practice is pretty busy and I got put on hold, but.. how can one complain when they are playing Barry White?  Oh the memories!  When we were kids, my sister, Sam, ADORED Barry White and she had all his albums, and they were well-played.  That voice.  Like velvet sliding over soft, sun-kissed shoulders... *cough*.. but I digress.

When the quite polite, yet personable woman answered the phone, I told her I needed to see Dr. S and played both my tumor AND my PC-name-dropping cards.  And thus, I see him tomorrow.

If there is one thing that cancer DOES do, it gets you results.  Like the day I called to make my first appointment with the oncologist, the lady said something about two weeks, to which I replied, "well, I have this 4cm tumor in the middle of my chest."  "Hold please."... a moment later, "We'll see you Tuesday."  Yeah, it sucks to have this card to play, but I may as well make use of it.

My sister, Jane, is making me a salmon burger for dinner.  I'm having a hard time eating, so she's spoling me with some of my favorite things, and Nancy is already designing me hats to wear once my hair deserts my head.  I posted on my facebook account that I wondered if, after losing my hair, I would look like Wo Fat.  Then I thought, oh lordy, how many people amongst my FB friends would actually know who the heck Wo Fat WAS?  And how in the world did I even think about him?  I have a very strange mind.

Pulp Fiction saved my sanity...

Saw my favorite surgeon today, to get scheduled to install that infusion port.  You know you have a tough row to hoe when your surgeon looks at you with sad eyes.  Gads. :)

After going over numerous things with him, and getting my hug, Jane and I set off to do my blood tests; both pre-op and pre-chemo tests.  After having to have several pokes just to get blood, I am MORE than happy to get that port on board.  Surgeon asked if I knew what it was, and I said that I figured it was like the expander from the breast reconstruction.  He smiled and said, "Exactly!"

I remember the first day I had to go get a 'fill' of saline put into my expander.  Having not had the procedure before, I was a little scared.  Dr. L, the reconstructive surgeon got me on the exam table, and pulled out a little square object, and waved it over my chest.  I asked him if that was his stud finder, and he smiled and said, "Close enough."

Finding the port, he put a dot on it with a soft marker, and went to fill the syringe.  Oh holy moses, it looked like he was filling a baby bottle, and the needle looked like it could go into my chest and out of my back.  Perhaps my fear was coloring the experience.

In any event, I'm guessing I was white as a sheet, because as he approached with that syringe, he paused, looked me straight in the eye and asked me, "So, did you ever see 'Pulp Fiction?'"

I laughed so hard, I never noticed the needle or the saline go in, exactly as he had planned.  That man is a saint.  If YOU haven't seen "Pulp Fiction," dear readers, a certain character goes into cardiac arrest, and a syringe of adrenaline is.. eventually...plunged into her chest.  It was a dark, yet comedic moment.  ...  You had to be there....

Now I am just waiting on the port, for without it, we can't start chemo and though I know it's not going to be much fun, I really want to get moving on this.  You know, being the realist that I am, I have already made and paid for my final 'arrangements.'  I'm going to be cremated and my ashes will go into the sundial in my back yard, where my mom's are now.  I didn't make these arrangements because of cancer, but rather because of my lung disease.  It seemed, after Mom's passing, just to be the right thing to do to take the burden off of my sisters.

I don't have anything on the agenda for tomorrow... so far.. so I can actually get some work done.  I need to let my manager know more about what's going on, but other than the occasional vacation day off, I don't think I'm GOING to have to do any sick leave, but ... time will tell.  At least my being holed up in my house should mitigate the possibility of infection, except of course from Chihuahua slobber, and I look at that as more medicinal than harmful. :)

Ports 'o Call!

Maybe that appostraphe should have been after the O... oh well.

Tomorrow I'm going to see my favorite surgeon so that he can give me an infusion port to make the delivery of chemo so much easier.  The oncologist set that appointment up this afternoon.  This dude gets things DONE!

We looked at my PET Scan, which was really fascinating.  He showed me the two lymph nodes but doesn't think they are in my lungs.  In any event, the esophageal cancer is inoperable in his opinion.  That sounds scary, but it's not necessarily so.  We still have options, and that's why I'm having the port put in.  We'll be doing two different types of chemo, and it'll take three hours, and we'll do it one day a week.

Oncologist is also looking at radiation, which would have to be done every day.  He hasn't made up his mind on that one, yet.  And me?  I'm just wanting to start it up and get it over.  I'm so tired right now and I know it's just the stress of talking about all this.  Because although you can think you're being pretty stoic about the whole thing, when you have to confront it head on, it does get damned scary.  Hey, but it could be worse; he could have said to go home, and get your affairs in order.  So there you go.

He says if we go the radiation route, it's going to not be very pleasant, as it will inflame my esophagus and I may get to the point at which I would need a feeding tube.  But, really, the chemo will probably make food taste like crap anyway, so, maybe I won't even mind.  I could sleep for a week.

So, port tomorrow, and I should go get my blood tests done; gotta do them before we can do the first chemo.  I've had a port of sorts before... well, it was the tissue expander which was part of the reconstruction of my amputated breast.  That was pretty cool; reconstructive surgeon filled it with saline every week, making it eventually big enough that it could be removed and the final implant... um,.. implanted.  Of course, that didn't take three hours!  I'm going to need a gameboy or something.  Oh, I can just take my Kindle, and go broke buying books out of sheer boredom!

Alright, more tomorrow, as... you might already have this impression... but I'm really tired. :)

Some PETS suck...

My PC just called, despite the fact that it's 8:30PM.  I have no problem with that, although he apologized.  He had the results of my PET scan. 

He started off saying it was good news... well, good and bad.  Most of my body was clear of cancer, but... well, there were these two lymph nodes in my lungs.  The PET results have been sent to my oncologist, so tomorrow, at 1:30PM, we'll find out what he thinks.  PC says it's probable we'll go directly into chemo, with which he thinks I'll do fine. 

Frankly, I'm pretty much in the stage of "OMG!  My body is NOT riddled with CANCER!"  So, really, the good far outweighs the bad.  But I didn't sleep well last night, because of a pain in my back.  It wasn't BACK pain, really, it was more like middle of the right shoulder.  Of course, I figured it was from being RIDDLED with cancer.... I'm such a boob. 

Yes, part of me is really scared again, because of the lesions found in my lungs, especially since PC says pulmo may want to do a bronchoscopy, but hey, if it goes as well as the endoscopy, HAH, that's cake!  Just give me that propofol again, and I'm happy.  I can't believe Michael Jackson used to get shot up with that to get to sleep most nights... carumba!  So how many other places can they find to insert a camera into my body?  Dang, I probably should not have asked that.

Alrighty, then, tomorrow the plan is to play with my numbers (work virtually), then head to the oncologist and see what he has to say.  Oh, and I finally beat Dragon Age:  Origins, as a human noble rogue, and it was a pretty cool ending cinematic.  And December 7th is WoW: Cataclysm, so I'm a pretty happy gamer geek camper these days.  Life is good.

Best Family EVER

Today, I had visits from two nieces and my sister in law.  Family connections are the strongest and the ones from which you receive the greatest healing power.  Family understands your unspoken travails and grants you access to their strength unequivocably.

And what fun we had, remembering the days when we were children, and reminiscing about the foibles of our paternal units; ok mostly MY paternal units.  So many memories were shaped by our childhood that would have had amazingly different slants had these things happened to us as adults. 

Chicken tortilla soup; it's what we supped upon and inspired our musings. It amazed us to recall the hall furnace; that horrifying heat element that laid in wait for you in the middle of the hallway; you HAD to walk on the sides of it or risk being forever imprinted with burns.  Who on earth would design a house like that in this day and age?  My nephew still bears the waffle scar from the day, as a toddler, he fell upon it.  Those puppies made radiators seem like a luxury!

My father, being fifty-two when I was born, was anachronistic; out of time with the reality his children experienced.  And I wasn't the last...next came Jane, and then Wendy, when Daddy was sixty.  Life adapted and moved on, but Daddy didn't and that made things hard for us.  It wasn't until we were adults that we realized just how perfectly wonderful were the gifts our older father had bestowed upon us.

Papa had two rules; you never lied, and you ALWAYS shared.  How powerful those lessons proved to be were only discovered once we became adults and realized that those two rules would ensure utmost happiness.

Of course, the sharing rule could be a tab problematic.  How?  Oh, let's say there was a piece of pie left over from Thanksgiving.  My aunt made amazing pumpkin pies.  But NO ONE would eat that last piece, because it would be selfish... it had to be shared.  So, inevitably, it would be thrown out because none of us would benefit from it unless we could ALL enjoy it.  But the lesson of sharing was one that would last forever; it would inspire community service, inspire charitable giving, inspire compassion and understanding for our fellow man.  My father gave us such an incredible gift.

I'm tired again, and ready for bed, but what a great day it was; sharing it with those I truly love and reconnecting and enforcing the bonds of family... the strongest bonds on earth.

The Doubts are Coming!

Most of today was painful.  I can't take any painkillers except for ...cough... Tylenol, and I'm far too attached to my liver to go there.  The pain makes me recall the conversations my brother and I had during his losing war on colon cancer.  Someone had told him that, when it comes to colon cancer, at least, by the time you actually feel pain, it's too late.

So, today, I've started to have doubts about my chances to fight.  WHICH IS DAMNED SILLY!  It's not like I've got the results of the PET scan in hand telling me to kiss my ass goodbye.  Actually, and quite happily, I managed to get an appointment with my oncologist for Tuesday.  Dr. F is a realist and he won't waste my time on empty promises, so if he says we can fight, then fight we will.

When my brother was in the last few weeks of life, I would call him almost every day, and we would discuss life, the universe and everything.  We both admitted that we had never bought into our Catholic upbringing of hell and damnation, and neither of us professed a belief in the 'popular' concept of one 'old white guy' god.

During one conversation, he asked me if I thought there was something beyond death, and I gave it alot of though and told him that I truly believed that I would see him again, somewhere.  I would see my dad, my aunt and every other person that I had ever loved who had passed on before us.  Of course, I didn't understand why I thought this way, but it was a fundamental belief that I could not naysay.

My brother said, "Well, then, if this is true, I promise you now that I will find a way to let you know the truth."

A few days later, he was gone, and that night, I had one of my unforgettable, very lucid and realistic dreams.  I do not have them often, and when I do, I can tell the difference between one of THESE and the normal dream.  But even in 'normal' dreams, I know I dream, and if I don't like where my dream is going, I wake up.

But this dream... I remember as if I had just woken from it.  I remember the colors, the cobblestones, the linens on the tables, the scents and who was there, and EVERY word spoken.  I was walking down a narrow street in an obviously European town.  Passing an intersection, I was drawn to a cafe, with outdoor tables surrounded by wrought iron railing adorned with trailing vine motifs.  As I approached, my oldest sister appeared and said to me, "Oh good, we thought you'd never get here!" 

She led me into the cafe, and there was my father, my aunt, other aunts and uncles, and I said to my sister, "Oh, I must have died in my sleep!"  There was no fear in the statement; just matter of fact.

"No, you're not dead," she said, "Daddy just wanted a family reunion with the living and the dead."  And I woke up.  It occurred to me that my brother who had just died was not in the cafe, and why my living sister was the spokesperson, I still don't understand.  And I wondered if this was the 'message' that my brother had promised to send, or if this was simply something I wanted so badly, my subconscious GAVE me the message I wanted.

Anyway, I haven't told many people about that dream, because I still question it, but later, when my mom was dying, I had another of THOSE particular dreams, but that'll have to wait for another post.

As for this one, I'm feeling better, for the memory of that dream always makes me smile, and perhaps that is the true message of the dream.