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Rolling round the bend.....Breast Cancer Diary Excerpt
Published on December 7, 2010 By Tova7 In Blogging

Today I went for the first big Chemo treatment of 6.  This regime involves a cocktail of three chemotherapies:  Taxotere, Carboplatin, and Herceptin (TCH) every three weeks, and I go in once a week for the Herceptin between the big cocktail.  After 18 weeks (barring problems) I go to Herceptin every 3 weeks up to 52 weeks, and start radiation, 7 weeks.  Then Tamoxifen for five years. 

Most civilian cancer centers are a little fancier than the one at Wright Patterson AFB.  While our civilian counter parts often enjoy :  a lovely view of an outside atrium, courtyard, pond, or just blue sky, as well as wifi, snacks and other amenities. 

  

 

 

 

 

 

Wright Patt’s Cancer Center is more like a nuclear bunker.  In the basement of the hospital, not a window in sight. 

You may wonder why those amenities are necessary in one center and not so much in another.  Well besides the obvious.  Civilian Cancer Centers are civilian/private/not for profit trying to attract patients to make money.  Cancer is big business.  They make the entire 4-5 hour experience as painless and convenient as possible hoping to bring in customers.  I won’t go into cost because my health insurance (which is essentially an HMO that requires me to seek all treatment first at the closest military facility to my home), is much like anyone else’s when it comes to paying for drugs.  A single white cell blood booster shot is $12,000-$15000 each in civilian and military hospitals/cancer centers.  These shots are required 6 times minimum for many chemo patients.

Anyway, when the base hospital can’t fit me; or doesn’t offer the services I require, then I am authorized to go off base by my insurance company and receive treatment.  My insurance covers a portion of that with the co-pay yadda yadda.  (The days of “free” military health care after retirement are long over.) 

I went to a local civilian facility/hospital/cancer center for an MRI.  When I walked in, a woman greeted me and hugged my neck.  The hospital was aesthetically pleasing, looked nice, felt rich, and charged an ungodly amount for the MRI.  But they have to pay for all that extra somehow.  And I LIKED the extra, would go so far as to say it made being sick, not so bad.  I actually enjoyed (as much as you can) the experience.  It was like riding in the first class car on an expensive commuter train, all elegance and easy riding. 

Now compare that sort of treatment and aesthetics to say, the post office.  You stand in line and wait your turn.  They don’t work around your schedule, you work around theirs.  Or you don’t receive chemo.  No skin off their nose.  There are no extra snacks, views, cell phone reception (not kidding about nuclear shelter) or wifi.  They have fluorescent lighting, cold water, a toilet, and  chemotherapy drugs.  The chairs are fairly standard pleather recliners and each now has a tv with basic cable channels behind it on the wall. 

The reasons for this are many, but it all boils down to stewardship.  It’s a military hospital, staffed by civilian government employees and active duty personnel.  There isn’t a hospital administrator working for the government that wants to stand before congress or the tax payers and explain why cancer patients seeking treatment at their facility need wifi, a view, atmosphere.  They’re not in it for profit.  Why would they spend tax payer money on first class tickets when coach serves the same purpose and gets in at the exact same time?

So yeah, you feel a little bit like a number sometimes.  No one is gonna hug your neck, you can be certain.  But the Oncology nurses?  Those ladies, those government employees are competent, pleasant, and capable of handling emergency situations with aplomb.  (As I know many of their civilian counterparts do as well.)

At first I really wanted the first class car.  But then I realized, I don’t care about the extras.  Not really.  Truth is, I’d take this treatment in the bathroom of a whore house.  Well technically that would be a little more visually interesting than cement block painted beige….lol, more like the entertainment car on the train, less like cramped coach.  I wonder if they’d serve margaritas?  Or straight Patron?  Nah, more like watered down house drinks for $20….(don’t ask how I know, I just do).

For me, it’s about buying back time, purchasing a “time punch” on the train of life, not about how good the car looks while doing it.  I have to sell pieces of myself to get time punched in the ticket, and hope the conductor is an honest man.  Hair, bones, muscles, skin, heart, brain function, all lost or sacrificing function in order to purchase me more time on the train of life; purchased and paid for in coach. 

So, back to the treatment today.  I pulled out of the station with a full stomach; an Einstein brothers strawberry white chocolate muffin.  At 550 calories and 25 grams of fat I intended it to be half my caloric intake for the day.  In the last 5 days I’ve gained 7 pounds.  SEVEN!  It has to be fluid because I have kept my caloric in-take at about 1000-1100 and four consecutive days of 50-60 minute plus workouts.  Just another toll along the tracks I guess.  Punch that ticket!

Anyone riding coach knows to bring their own snacks and entertainment.  And I don’t go anywhere without something big and red strapped to my body..today it was my favorite red purse (which the hubby hates..too big, too loud, not the expensive purses he’s purchased as gifts for me!), other days it’s a loud red scarf and gloves…most days its all three.  Coach doesn’t have to be boring!!

The room was full today.  I was lucky to get a chair.  They also keep a bed for people too ill to sit in chairs.  I was NOT going to use the bed.  Even if it meant postponing and taking the next train.  I’m not dead, and I refuse to lay down to cancer.  I will sit or stand.  I’ll lay down when I’m dead, and probably on the tracks.  (What?  I’m telling you, days of steroids and then IV steroids in coach….WHOA!  See, they DO serve cocktails, of a sort.)

I kinda felt bad for the two nurses.  They were so busy and I was there almost 5 hours.  Did I mention the steroids?  I couldn’t stop talking.  Could not. But isn’t that the way in coach?  You talk to people because you don’t have a lot of toys to keep you busy. 

Gavin calls the steroids my “asteroids.”  He says, “Mom, don’t forget to take your asteroids to feel better!!”  That boy is amazing.  Really.  I don’t say that about every child.  Those of you who know me well, know that.  Gavin is going places….he has more energy and imagination than any person I’ve ever met in my life.  He doesn’t give up, and he doesn’t give in.  He works and works and cries and works until it works out.  He’s 7 and already conquered the biggest lesson in life.  Never, ever, ever, quit.  Ever.

Ok, after 5 hours and a big fat muffin, I wasn’t feeling too hot.  Tired, didn’t sleep at all last night, and the sugar overload for breakfast?  Not good.  I understand on this regime, the day after chemo in the evening, the symptoms start, and last, at first about 3 days and then accumulate days with each additional treatment.  They take toxicity to the utter line of survival, and the last treatment often takes weeks to overcome.  So I came home and jumped on the cross trainer for 70 minutes, though the last 20 about did me in.  I know for SURE the worse I feel, the better exercise makes me feel.  It’s a fact with my hypothyroid, and I trust it will be true with chemo. 

The whole time I pushed (going light on the right side) but trying to stay at around 160 bpm (what?  I was tired!)..I kept thinking Lance Armstrong did this during chemo, I can do this too.  I will do this.  I will.  Boy tho, the last 20 I really felt.  And you know what?  I feel fantastic!  Way better than I did after 5 hours of chemo. 

Don’t get me wrong, I do understand the train is acomin’, comin’ down the tracks.  My first ticket is about to be punched hard.  Just the steroid crash is killer, add to that the other side effects, and it’s gonna be ugly up in here for a few days.  I imagine some of my coach companions secretly relished the idea of this talkative woman with hair, (and taking pictures for god’s sake, what does she think this is..a vacation?), hurting bad in 24-36  hours when the first ticket punch comes due.

But like all experienced (or well read travelers) I am prepared.  Sugar free hard candy, tea, water, rice, bland food to keep down.  And lots of anti-nausea stuff so I can get up and introduce my cross trainer to the new 7 pounds residing on my ass, belly, and wherever else it goes.  But I’m sick.  I’ll feel like crap, and then I’ll get over it.

My husband took the picture.  Not only does he hate the big red purse, he thinks chemo is the death train and I am way too happy to be on it.  I ask him if he’d prefer the alternative…no train at all?  He shakes his head, takes pictures to show his next wife what a nut job his first was….(he doesn’t like that joke either), and  I just smile and tell him I’m not dead yet…I’m not laying down.  I’m not quitting.  Ever.  I’ll slide into my grave with a ticket so punched with holes it disintegrates in the conductor’s hand, no name visible.

And if I can, if I’m slick enough….I plan on cheating that old bastard, riding the train, paying my dues, and hopping off before final payment….but that will be our little secret.

Ya hear that train a comin’?  Gavin recommends this song….

 

Enter video caption here

 

 


Comments
on Dec 07, 2010

 Please ignore typos and grammatical errors... I don't have a lot of time or patience for editing this today!

And Gavin really does like Johnny Cash.  Heard him on a neighbor's radio and wants the CD.  lol. 

on Dec 07, 2010

Well, you just answered all the questions I asked in the letter! I'm so glad you are a fighter and that awesome boy Gavin is too! Plus, I'm digging your red purse.

Keep up the fight sister! You are a champ! (where's the bicep smiley?)

on Dec 07, 2010

Who ever would have thought an article about getting chemotherapy could be so upbeat and interesting?!!

You certainly look pretty and comfortable in the big blue leather recliner. Keep your winning, "I shall overcome" attitude...it's the only way to go. I think you will be beautiful bald too.  

Are you glad now for the port which makes the IV so much easier?

 

on Dec 07, 2010

Who ever would have thought an article about getting chemotherapy could be so upbeat and interesting?!!

My cousin swears ALL things are possible through Johnny Cash who singith to him.  Yes I am very glad I have the port.  It is almost worth the price of a punctured lung.  Almost. 

Well, you just answered all the questions I asked in the letter! I'm so glad you are a fighter and that awesome boy Gavin is too! Plus, I'm digging your red purse. Keep up the fight sister! You are a champ! (where's the bicep smiley?)

Thanks Kelly...but I still plan on returning your email, sans this info!

 

on Dec 08, 2010

I can vouch for the big red purse and the over abundance of talking but that's what makes you...you!  They say your purse says alot about who you are. Some like little itty bitty purses, some huge, some colorful, some bland, some with lots of organizers, some with nothing but just a big ol' catchall compartment.   Let's just say it like this..you have purse-onality! 

Love you lots!  (LUL)

on Dec 08, 2010

My youngest loves Johnny Cash as well - it was the movie that hooked him.

I hope the train is not too bumpy for you.

on Dec 08, 2010

My youngest loves Johnny Cash as well - it was the movie that hooked him.

I hope the train is not too bumpy for you.

There's never been any other kind of trip for me Doc.  I would be disappointed if it was easy.  But thanks! 

I can vouch for the big red purse and the over abundance of talking but that's what makes you...you! They say your purse says alot about who you are. Some like little itty bitty purses, some huge, some colorful, some bland, some with lots of organizers, some with nothing but just a big ol' catchall compartment. Let's just say it like this..you have purse-onality!

Ha.  Well if you thought I talked a lot before...you should see me on steroids!!  I worked like a dog today...went grocery shopping, spent 70 minutes on the crosstrainer...but the last of the steroids this session are gone....so tomorrow the conductor will likely be by for payment.  My stomach is already feeling wiggly....

 

on Dec 09, 2010

Tova on Steroids.  Sounds like a description of a force of nature...like a hurricane or tornado...

All that comes to mind is a quote from Saburu Sakai,  Japan's greatest fighter ace of WWII, filled with wisdom and emotion...he said, "BONZAI !!!"  You go, girl.

on Dec 09, 2010

Well I hit 48 hours today..and so far I feel GREAT!!  Exericse really does make a difference...of course tomorrow I may be puking up my guts....lol.  But if I clear 72 hours like this?? SOOOOTH SAILIN.

(Yes I know, I totally just yelled for the conductor to come punch my ticket! lol)

on Dec 09, 2010

"BONZAI !!!" You go, girl.

Lol, I like it!

on Dec 11, 2010

Well, the 7 pounds are gone, + 3...I think I spent the last 4 days running to the bathroom!  Up and down all night long.....and lost 10 pounds in 4 days (not really tho, 7 pounds of that was chemo)...omgoodness...yeah, um, I'd rather be fat. 

Ok, so they told me 24-72 hours after treatment I will likely have the "worst" symptoms (nausea, fatigue, mouth sores, yadda yadda).

Almost EXACTLY 72 hours after treatment my lips went numb and everything started tasting like asphalt.  Yum.  That lasted a powerful day, and now it's residual....bareable, but still icky.

Friday morning ...nauseated and tired, meaning before I woke up for the day  (in that place between sleep and wake) I kept dreaming someone forced me to eat maggots covered in drywall.  How gross is that? So my stomach was a little wiggly until I spent 60 minutes on the cross trainer and took some anti-nausea med.

I'm shakey today (Sat).  I think it's from hunger.  lol  I can't stop thinking about the chocolate covered popcorn at Pretzel Fest in the mall...but I know it won't taste good...but the idea of it is scrumptious.

 So far (and yes I know this is only my 1st treatment and they are cumulative so this won't be the case the entire time) being pregnant, or heck, hypothyroid is more draining than chemo. 

My biggest complaint so far is chemo brain.  It's thicker than hypothyroid fog, and I just can't seem to visualize the way I normally do.  I think in pictures.  The fog obscures half of them.

Oh well.  Boring update I know, but my family comes here to keep updated so I don't have to repeat the same things over and over in email or by phone.....

 

 

on Dec 11, 2010

((((((((((((((((T)))))))))))))))

on Dec 13, 2010

KFC Kickin For Christ
((((((((((((((((T)))))))))))))))

Dittos!

And the taste and dream?  That would make me give up eating!  I hope it does not last long.

And thank you for letting us share your experience.  I know it is hard for you, but your gift makes at least reading about it educational.

on Dec 13, 2010

Thanks Doc and KFC!