Count is now at FOUR brain Tumors

Today I had my first radiation on my thigh, and it went swimmingly.

The sims for the brain radiation did not progress so well.  I hated the hot wet thingy over my face; freaked me out.  And it will be placed on my face for every brain radiation.  I got a script for Ativan.

Dr. Ono, my radiation oncologist showed me my MRI and we counted out the four tumors... inoperable and all affecting my motor skills.  Because there are so many tumors, and some of them quite small, we expect that there are more we cannot see yet.  So we will be doing a course of whole brain radiation.  Joy.  But it's only sixteen sessions.  Remember I did 28 lat year on the esophagus.

Sixteen sounds very doable.  We're going to do the leg concurrently, and that's 16 sessions as well.  So it all sounds quite doable, although the whole brain radiation does have substantial risks, mostly with my motor skills.   But I have faith... and I choose hope.

Love and hugs to all.

No GOOD News

The CT results are in.  Bone cancer in my left thigh and a new tumor on my left adrenal gland.  I'm going to be setting up for radiation on the thigh, probably starting after the new year.

That certainly explains the pain I've been having.  Wow, the results made Dr. F swear.  I have never heard him swear.

The radiation oncologist said if this had happened two years ago, the only thing they did was amputate the leg.  In fact, the radiation is only going to shrink the tumor so that at least I won't have so much pain.  It would be nice to sleep more than an hour at a time.

Dr. F gave me a prescription for some pain relieving patches.  I hope THEY work.

That's it for this post; I'm kind of overwhelmed, and feeling sick.

Love and hugs to all.

Ahhh, Tooth is Covered

What is it with teeth, or your mouth in general, that makes your tongue seek out and obsess over even the slightest change?  Maybe it's just me. :D


Dr. Baker fixed me up, using a clove flavored putty-like substance as a temporary cover over the crumbling filling.  It's hard as a rock now, but it WAS putty when it went into my mouth.  It took approximately 15 minutes total, with my drive over and my drive back home.  It's good to have a dentist just around the block.


Later, I had my appointment with Dr. Tsai, the Radiation Oncologist.  She says I don't need to see her anymore unless Dr. Fastenberg thinks she's needed.  She checked my lungs, as she always does and was happy with the air movement.  I did tell her I'd had several infections since the beginning of this round of chemo, as well as four ocular migraines in one month.


She told me that Dr. F was thrilled at how well I was tolerating the chemo.  HAHAHAH, that means I haven't been hospitalized.  But I did tell her about the horrible pain and that I can tolerate it because I know it won't last.


So, I'll tell all this again to Dr. Fastenberg on Tuesday before my next infusion.  Monday I go for my pre-chemo blood-letting.  Can't wait to see those results, since I didn't do the Neulasta shot.


We woke up this morning to TV news 'copters circling the neighborhood.  Sadly, a house fire took the life of an elderly gentleman, although he managed to get the woman who lived with him out to safety.  I knew this man, vaguely.  In my younger days, I used to do a lot of volunteer work in my city.  I remember very well the day he stood up and called the city council 'whoremongers.'  And that was just the tip of the iceberg for this guy.  But he certainly was a citizen who felt strongly about community involvement.


Of course, being a very hot, very smokey fire, and because we were in the middle of an Ozone Health Watch, I was having a hard time breathing well today.  Again, thank the deities for my Albuterol and the nebulizer.


Since I had such a trying day, I think I'm going to go have a glass of red wine.  Just kidding about the trying day, but not about the glass of wine. :D


Be safe, all, be well, happy and may you always have many hugs in your future.

And Back to Work I *WILL* Go!

I'm exceedingly happy to report that I'll officially be returning to work on 31 January! :)  Yes, this makes me very happy, considering I've still got stage IV Esophageal Cancer.  But if the Herceptin treatments can keep this stuff from running rampant all over my body, then baby, I am ready to get back to a 'normal' life!

Not to say three months off work wasn't necessary.  At my visit to the Radiation Oncologist today, she iterated that I had one of the worst regimens of chemo and radiation around.  And as my dear friends Jon and Michelle can vouch, I wasn't doing all that well during the chemo.  Some days it really was difficult to get out of bed and acknowledge that the world was still there.  :/

Now, we have to watch out for Radiation Pneumonitis which Dr. Tsai says can occur about four to six months after the cessation of the radiation.  And thus, I continue to take my temperature every evening. 

But oh my gosh, I am so very happy today.  I can't wait to see my co-workers, customers and friends; my Boeing family.  I wish I could say that I'll see you with a head full of my normal curly hair, but... meh.  I don't know why suddenly the lack of hair is bothering me.  I know it's better to not have hair and live, than to be a hairy corpse.  And it's not like I have NO hair at all... I have it, just not much of it.  It used to fill in all the places on my head; now, there are gaps... in some cases, big gaps.  Again, it looks like I have mange.  I toy with the idea of getting a wig, but I rather think those things are more of a pain than a pleasure. 

Maybe I'll just wear hats.  I'll start a fashion trend.  Big hats, small hats, skull caps, fishing caps, cowboy hats, berets... hmmm, that could be fun. :)

Well, hugs to everyone that reads this; things are looking up, and life is good.

I'm DONE!

Radiation 28 is now under my belt... or in my chest, as it were, and I've got no more radiation treatments for at least a month.  I see Dr. T, the RO on the 11th of January and then we'll decide where to go from there.

Tomorrow is Chemo day, and as per my normal drill, I'm sure I'll post whilst being infused.

Oh, and by the way, I got my Rice Pudding. :)

And right now... I'm snacking on my Jalapeno Smokehouse Almonds.... like a celebratory snacking... happy that radiation is done, and I don't have to go to Ironwood EVERY SINGLE DAY of my week, weekends excluded.

Alrighty, I'll post more tomorrow.  Love to all!

Radiation Consult

I saw Dr. Tsai after today's radiation, and she was concerned about my lungs because Dr. F told her that I wasn't moving much air on Thursday.  She listened to them, and was glad to hear more air movement today.  I told her that the change in the weather was definitely affecting my asthma, but I watch my sats and my peak flow meter numbers, and I'm doing pretty well.

Dr. T said that she and Dr. F want the CT on the 30th so that we can see if there has been any change in the tumor.  If, as she suspects, there has been some shrinkage, then she wants to recalibrate my radiation and shrink the area of effect to best save my lungs.  I *knew* December 8 wouldn't be my last radiation. :P

Here is my Hibiscus.  It still needs a bit of polishing up, but I think it actually LOOKS like a hibiscus blossom, so I'm happy. :)

And so, two more radiations this week, and Dr. T gave me a couple of prescriptions just in case things get bad over the long weekend.  I kid you not, one is for Magic Mouthwash.  It's Lidocaine, Maalox and Benadryl... I'm supposed to slurp it down with a straw, so it goes into the esophagus and not in my mouth.  A lidocained tongue is no good to anyone. ;)

The other prescription is for some heavy-duty painkillers.  I'm not a big fan of painkillers in any way, shape, or form.  I will have to be in a LOT of pain before I will take one.  After my mastectomy, I took ONE painkiller, and that was because the ride home from the hospital was really ouchie.  My sister says I deal with pain very well. 

I'm starting to play World Of Warcraft again, so at least I have lots to do.  And with my new watercolor crayons, holy cow, life is good. :)

Hugs and kisses to all!  Extra ones to Jon and Michelle, as they are experiencing the joy of cross country flight.  I love you both very much.

Tired, tired, tired...

It really amazes me how 40 seconds of being zapped by radiation, five times a week, can make you feel weak as a kitten.  Some days, I'll go outside to get the mail, if I see our postal person our there, and it feels like I have to go miles across the desert to get there.  But believe me, I want to walk; I want to stay up on my feet and push and not let this weakness bring me down.  And, not to worry, it won't... I'm far too ornery. ;)

Isn't coffee a wonderful pleasure?  I think back to my parents, and when I say that, you should know that I had three;  Mom, Dad, and my mom's sister, Auntie, who had always lived with us.  There was always coffee in the house.  Of course we children were not interested, nor would we be given any.  Oh sure, with eight of us, wouldn't it be great if we were caffeine'd up?  Gods forbid.

Not sure when I picked up the love of coffee.  I drink mine black, for the most part. As did my parents, as Dad was diabetic, and Mom was diagnosed, too, many years later.  We didn't, in fact, have much sugar at all in our lives, except for Halloween or when my dad's sisters Charlotte and Cecilia gave us all our Easter Baskets.  Oooh, See's Candy eggs.... great memories there.

Coffee just tastes good to me.  Wendy, on the other hand, never developed the taste for it.  In this house Jane and I can drink coffee all day.  I've been known to get up, have a cup of coffee, and then go back to sleep.  Mom was the same way.  I wonder if we become caffeine resistant.

Today is radiation number 14.  Is it weird that I am counting them?  I think I count them because of all the warnings I have had of the cumulative effect of them, and so far, I'm doing pretty well, and you'd think after thirteen of them, I might be having pain, irritation, etc.  Thankfully, I'm not; at least not enough to worry about.

I saw the Radiation Oncologist following my zap yesterday, and she was delighted with my appearance, my lungs and my progress... and remember, we LIKE it when she's happy. :D  I just don't know enough about this progression to understand what's good and what's not good, but Dr T certainly does.  I have great respect for her.  So if she's happy, so am I!

Had to do some bedroom re-arranging yesterday.  My NuStep got moved over toward my closet so that I could steal the Poang chair and ottoman from Cathy's room.  Gosh, this thing is so comfortable.  When I get tired, I sit there and shuffle through the seventy zillion cable channels, and usually find nothing I want to watch.  But, I cuddle up there with Lindsay's and Sandi's quilt and revel in that softness.  I am spoiled. ;)

Well, I think I'll go try to play some World of Warcraft for a bit.  I hear all the major cities are under attack, so I must go defend my homeland.  Zug Zug!

Things You Never Thought You'd Hear...

"..and DO NOT lose any weight."  This from my radiation oncologist.  Words I never thought to hear in my lifetime.  I'm not the most svelt of women and years of steroids have made my metabolism sloth-like, but of course, with this cancer, I am dropping weight far too easily.

Between Friday morning and Saturday evening, I had lost 4 lbs.  So, knowing that my radiation treatment measurements had all been taken on that Friday, I quite bravely decided I had to eat... Ice Cream!  Yes, Ice Cream,... one of those things I had rather denied myself except as a very occasional treat.  Like in the old days, when I had David Pickles as my minion.  He loved ice cream, and would find me a drumstick once a week.  It was heaven.  He was a good minion. :)

But once my pulmonologist had sent me to pulmonary rehab, and I began making workouts habitual, it just wasn't something I wanted or needed, Ice Cream.  I have a NuStep.  Go see it HERE!  This was one of the pieces of equipment they had us use in rehab, and it was my personal favorite.  It's one that I use at a sustainable rate.  When I was first in rehab, I used it for 11 minutes, but 5 minutes, then a 5 minute rest and then the last 6 minutes, and that was with no resistance.  Today, or at least before this cancer hit, I was doing an average of 38 uninterrupted minutes a day, at level three resistance.

Right now, though, um, not so much.  Still, I get on it and do what I can because I don't want to lose the habit it has become.  And it's still good for my lungs!  I love my NuStep, and it's probably the reason why my lung disease has been stable for a while, now.

So, anyway, now I get to obsess about my weight in a whole new way.  YAY!  Blech.  I'm going to ask my MO about something like Ensure or Glucerna, because frankly, liquids do not hurt as much as solid foods, pulverized by chewing or not.  Wendy says they have quite a few liquid nutritional supplements by prescription only, so maybe that is where we can go.  I don't care; I'm just tired of the pain.

And on that uplifting note, it's Sunday afternoon, and I think I shall take my 'toons back to Azeroth and go Trick or Treating!  Hasta la vista, folks!

Quick Update...

Well, RO finally had her chat with MO, and Thursday, I'll be having a CT prior to running the radiation simulations.  They have to analyze a load of data to decide how they are going to radiate and what area will be radiated.

Chemo is slated to start on the 28th, and IF they are doing the radiation, it will begin on that day as well.

So, Thursdays are going be chock-full of fun for about 8 weeks.  Of course radiation is every day for 8 weeks.  I can do it. :)

----------------------------***-----------------------------



And here is a small picture of the shawl and hat that Julie crafted for me. 
I've changed my profile pic to show you the pink hat.  Aren't they neat??

TGIF, baby!

YAY for Fridays!  I love Friday because it means TWO WHOLE DAYS of no doctors, or surgeries or chemo or radiation starting tomorrow!!!  WOOHOOO!

Well, I saw the radiation oncologist (RO) today, and BOY is this going to be an adventure. :D

She tells me that one of the side effects of the radiation is hair loss.  At the site of the radiation.  Which is my chest.  Now, I don't know about the rest of you ladies, but... I don't HAVE any hair on my chest.  So, no worries there.  Next on the list of immdiate side effects?  Could be something like a slight tan to a sunburn.  Hmmm, my oldest brother used to call me Mayonnaise because I was as white as Best Foods REAL Mayonnaise.  I apparently got my skin tone DNA from my Irish-ish mother, and not my Mexican-ish father.  Yes, I am ... pale.  So, maybe I'll finally get some color, and how bad can that be? 

Ok, that's two side effects with which I can deal.  But of course, there has to be the actual serious ones, and those would be inflammation of the esophagus, a radiation related pnuemonitis, and possible heart injury.  Again, if we don't do this, I die... so really, is there a choice?  I'll takes my chances.

But don't think for a moment that I do not appreciate the candor of all the doctors with whom I'm working.  I'm a revoltingly happy person, but despite that, I do fully understand that I may not have another birthday.  So many complications can arise from any and all of the coming treatments, but I also know that WITHOUT them, I have no hope at all.

RO is going to consult with MO (medical oncologist) on Monday, and weigh the risk/benefit ratios and see where we go from here.  One option is to begin the chemo and see how that progresses before radiation begins.  In theory, that would lessen the radiation area of effect and limit the possibility of more damage to my lungs.

Yes, optimally, we would just get on with the chemo and radiation together, but as the RO says, she doesn't want me to end up on O2 24/7 because of the radiation.  Right now, I only use Oxygen in a bleed into my CPAP while I sleep.

So, I'm taking the weekend off.  I'm going to read, eat what I can, play World of Warcraft and sleep as much as possible, and I'll see you all on Monday. 

TGIF!