Advice for esophageal cancer survivors

Well, time sure flies when YOU HAVE NO PAIN!!!! It's  just plain awesome, thank you very much... From here on out I plan to check in on this site maybe once a year or if something like re-occurrence (Lord perish that thought) happens or whatever.

I am , for the most part, am out raising my boys, doing volunteer work and getting into the swing of going back to school. Gotta finish that degree!  I get tired sometimes long before the end of the day, but sometimes I wonder if that is just the raising my 4  boys part - as well as going non stop nearly every day. More on that in a minute.

As I am pretty much through all the nasty hard and hurt-y parts, I thought I might share just a few things to look out for after you have healed from your surgery.

* chronic low blood cell count leading to severe anemia

This is way easy to fix. Get a prenatal vitamin high in iron an protein.  I use Buried Treasure Liquid Prenatal Plus. It works wonderfully and the only reason I had such difficulty with this issue is because after we moved, I didn't  get properly diagnosed for over a year. Yes, I had low blood pressure,  but the underlying cause was not enough red blood cells and THAT was causing me to black out. It went so long without treatment, my issue became hypoxic anemia. All could have been avoided by simply taking these vitamins from the beginning.

* stomach pains and severe gas.

Another easy fix. For me it was, eat no sugar and very TINY amounts of fat. Then I try to make that olive oil or olives or whatever does not have massive amounts of saturated fat. Foods that are way high in fiber are also a big no no for me. I control that by using Probiotics or that Activia stuff I love to sing the jingle for. Also small amounts of fiber, like what is found in fruit (not prunes or raisins) like apples or pears and bananas also are perfect. NO coffee and only herbal tea ( I found this out from a few other survivors ) , and (sob) no chocolate.

* scar tissue

This is what caused my stomophagus to block larger food items like steak or bread. Not a big deal. I just would schedule a dilation when I noticed my throat getting a bit tight. The last couple dilations I had injected me with steroids to inhibit new growth and they seem to last a good year or two.

*keeping the weight on

Weird problem I know, but you HAVE to keep your weight within a reasonable range or things get a bit dicey. To the tune of malnutrition.  Without sugars or most fats, its harder than it sounds. Besides, I for one DO NOT like having little or no boobs. I know the men will not care about this issue, but when you get to o skinny, your body will start taking from muscle, and we all know you all want to be stud muffins. 

*make sure you take down time to rest regularly

This one is the hardest for me to do. When I ignore this one, my immune system becomes compromised and I get sick at the drop of a hat. My kids get a sniffle, I get full blown pneumonia. They get a 24 hour bug, I am sick for a week. The good news is, I recover, because I am forced to take down that down time I so desperately should have taken in the first place. I'm kinda thick like that...

*LIVE your life to the fullest 

You faced death, stared it in the face. Life, every extra day, has become a gift. Show some appreciation and ENJOY! Make up your mind to be HAPPY, Go river rafting or tubing, join a charity group, volunteer at your local school. Find what interests you and DO it.

Sometimes depression can set in with survivors AND those currently fighting this monster. Fight the Depression Monster just as hard as you fought the Cancer Monster. If it makes you happy, put up a Christmas tree in May, buy 20 new pair of shoes, get that workbench and Power Tools (arr arrr arr)  you always wanted. Color your hair and get a new style, whatever works. Make sure you look into medication and don't be too proud to take it if you are already on it.

I guess that is about it, hopefully I will not sign in here for another year or so. Signing  out WITH NO PAIN!!!!! ,

Stacey

Me and my two amazing, gorgeous, brilliant , did I say amazing?, bonus daughters.

me and my boys with my bonus son, on the left (I adore that child), my bonus nephew and oh, the love of my life :)

So much has happened!

#1 I am happy to report that I am dying no faster than any of the rest of you. A friend told me I should have about 40 more years left or so. I'll take it! 

Turns out biopsy was negative!

 *happy dance , happy dance, happy dance!* 

 Precancerous cysts and fibroids are something I can deal with. I am having surgery to remove pretty much everything  reproductive wise at the beginning of June. Since I already have a passel of amazing kiddos,  I'm TOTALLY OK with that. No more PMS,  no more sending hubby out to buy feminine products (and yes, yes he does love me - that proves it!), no more Midol and no more crazy mood swings!!! We are going to shoot for keeping one of the ovaries, so hopefully I won't have all the hormonal issues that could accompany this procedure.

(happy little sigh)...

#2 My oncologist wants to keep a closer eye on me (picturing the All Seeing Eye and it's starting to creep me out...), SO what that means is I have a bunch of pokes and prods coming up. Since it is almost June (the anniversary of my surgery) he thought we could get an early start...

So to recap, I have upcoming: PET scan, mammogram, endoscopy, colonoscopy, and of course the hysterectomy and all accompanying tests, blood work  and check ups. (big sigh)  But its all good, I'm here to watch my kids wrestle each other, dress the dog up as the Hulk  (pretty funny BTW... Good thing we have an UBER patient dog...), and take my oldest to his orchestra rehearsals ( he plays the viola). I get to giggle as I listen to my younger one went retreating into my closet to sing sad and rambling made up songs about how mom doesn't listen to him and he is SO a big kid and SHOULD be able to play with the older kids, and he IS a big boy, but no one understands, and  - ooo hey look a nickel! ...  I get too smile and play the tooth fairy, kiss  my babies in their sleep, revel in the visits from my bonus kids, take pride in their accomplishments, and sit on my hubby's lap. I'm really OK with that.

#3 I have been doing much better blood pressure wise, but it is still a bit too low.  I try my best to keep it in the 90/60s range and am ecstatic when I can break 100/70. That doesn't happen too often though.  My weight has been giving me fits and starts. I was surprisingly not a happy camper when I bought my first size 3 jeans. (WHO HAS THIS PROBLEM???!!) I range from 109 to 115 but I am trying my darnest to get to a good healthy 125. I would prefer 130, as I would prefer LOTSA room between me and Dolores,  but beggars can't be choosers as they say.

#4 I'm having issues with gas of all things! It makes my tummy distend to look like I am about four months preggers and only a few well timed bits of ... a-hem... flatulence usually handles it. Well, you SAID you wanted to know how I was! (revisiting the cartoon previously posted... ). But that's about it, I don't have issues with dumping and that in and of itself is phenomenal, so I can't complain. Still have trouble with fats and sugars, and make sure my diet steers clear of those, but that is a healthier way to live anyway.

I think that's it for now, I'll keep you updated as testing comes in and as plans progress for surgery and such.  Until then, wish me happy farting...um I mean, good luck... (*sheepish  grin)

Ok then, well my day sucked. How was yours?

I better back up a little. First, the good news. We finally figured out what was causing me to fall flat so often that my driving privileges were suspended! Low blood pressure due mostly to dehydration of all the silly things! I have myself on a schedule of drinking at least 4 oz every 30 minutes. Then I still have room to squeeze in snacks and food every 2 hours. It is much more difficult than it sounds, but it seems to be working... Also we figured out most of the reasons I was having so much severe pain! Too much tummy acid and no nerves to tell me I had heartburn. I am on a mega dose of  Prilosec now, and with the added routine of food and water intervals, I got my driving privileges back, I no longer hurt to the point of really big swear word type owies and I no longer am having an affair with various floor coverings. Quite frankly I have no desire to visit that particular mistress again any time within this, or the next lifetime.

Now the suck-y part. After a weekend in the 80 degree range, and swimming with my boys this Saturday until we all resembled prune-y old people, New Mexico HAD to work it up to it snowing! Snowing here, people! It hasn't stopped yet. I still had to get to the doctor to follow up on a small amount of pain I was having, nowhere NEAR where I was feeling mind you, but still there none the less. Well, I just finished a battery of tests and I was SO not expecting a biopsy today.  I am now in that horrid and terrible waiting game NO one should ever have to experience.(wondering to self if the Jeopardy theme could be played in a very ominous, discordant key, perhaps in the "A minor" range......)

  
I will be finding out soon if I have uterine (endometrine) cancer, ovarian cancer or both.

 Well, you know me, the first thing I did was deny it could be cancer, then I cried, then I felt extremely discouraged because there was no way I could keep beating the odds - and then Cary was there, telling me in no uncertain terms that I WOULD beat this AND the odds. He never wavered. Then we sat down together and did a slew of research. I feel much better now.

See, those steps everyone goes on about are very real. I am also very thankful for my hubby. He pulled be up yet again while I was kicking and belly aching. I really do feel much better. TONS more optimistic and hopeful.
 
Even if it is the worst case scenario, and the tests come back positive, I could not have had it for more that a year and a half (too many complete  MRI and CT scans, remember?) and the 5 year survival rate is right around 95% for both stage 1 and 2. Much better than the 1 year, 15% chance I had last time! ...

Finally! A new post! Not that any of my posts are all that gripping. I just haven't called my "far away family" in a dogs age and am feeling pretty darn guilty. I assuage that guilt by writing this. See what I did there? Guilt done away with AND caught everyone up to date. I would pat myself on the back but it is still too prickly from the post-guilt-recovery thing I got goin' on...

OK so a quick run down. My tummy hurts for about 2 hours after I eat, no matter WHAT I eat, - oh and have I mentioned I need to eat every two hours in the Valient yet vain effort to maintain my weight.  Yeeaaahh... not so successful on that.  Still Twilight Zoning here people...

*looking back, reminiscing on the post baby trying-my-darnest-to-get-the-ol'-hips-back-into-a-decent-pair-o'-jeans... deep nostalgic sigh*

All my favorite clothes have once again met with the Good-will pile, leaving me to ponder yet again the very real  possibility getting all sorts of wild wide eyed looks as I meander into the next parent teacher conference in my skivvies.

OK I was gonna go with my Big Girl Panties, but as the author of Wild Wacky Wonderful Woman said, "I am wearing 'em but they are starting to bunch, OK!".

I am going through a battery of tests to ferret out the cause of all this mayhem, and quite frankly no matter what it is , I can tackle it. ( FAST! SOMEBODY KNOCK ON WOOD! THROW SALT OVER YOUR SHOULDER, GET A BLACK CAT TO WALK IN REVERSE ! ANNNYYYTHING!!!)

I should rephrase that before the Universe decided to whack me a good one - yet again. I can tackle it ~ if it is the ulcers or speed of digestion thing the doctor suspects.  Just because of who I am and my history, cancerous re-occurrence is always a slight chance.

For now I am doing my best to eat and not fall flat, AND I have been banned from driving all by my lonesome until we can figure this out. Which is the biggest "suck-age" factor in all this. Not too bad considering what the original, back in January of 2010, suck-age was!

Well, here we are in the wilds of New Mexico. And you know what? I really like it! The kids all love their new schools, the hubby is loving his new job and I like how slow paced life is here.

I just didn't expect to be so cold. Who knew that Albuquerque in being called "HIGH" desert meant it would be  I would have to read all those fine print messages referring to "higher elevations" on cake mix boxes. Its all good though. I bought a coat for the first time in 6 years, make my kids wear 2 shirts to school, have stocked up on hats, gloves and scarves, and make the boys wear coats to school EVERY day. My kids are very annoyed. They'll live.

I'm just glad to have the family all in one state. Even for six weeks,the husband working in New Mexico and the rest of us in California sucked eggs royally. I know I am a wuss. I fully admit it. Military wives, single moms and even moms whose husbands just aren't there for them are all kinds of super-women to me.   I stand in awe of these amazing ladies. And the single dads who really support their kids, and not just with a check each month, and the care givers to the really ill, and the caregivers to kids whose parents are really ill. I am convinced it is easier to be the sicko in the relationship than the caregiver. They are heroes to me.

And I would know.

With hubby around, I have finally stopped loosing weight because he is constantly feeding me. I have only passed out once since I've been here. In one of those huge warehouse style grocery stores. At the front entrance. On a Saturday. In front of about a thousand people. And a squad of Albuquerque fire fighters. And a very sweet old lady whose pronounced extremely loudly that if I haven't had my period, I must start thinking about the fact that I could be pregnant. I wasn't embarrassed. Not. At. All.

Since then I can't sneeze without my guy handing me a piece of fruit or a plate of spaghetti. He worries. If I get any smaller than the smallish size six I am at now, we might have to revisit the issue in all seriousness, but for now its all good. I know hubby isn't into skinny chicks. :)

OKaaay ...
I got one more question for that Universe thing.

Why oh why could I never loose weight when I was trying so hard post babies, and now, when my health is depending on me NOT loosing weight, I am shedding "fluff" faster than a Persian kitty at the groomers?!
Apparently all this packing and hefting and dragging stuff causes me to use more calories than I can take in. Again with the Twilight Zone crap! Who in the world has this problem?! I mean I am trying my danged-est (and yes I hear by christen that a word to keep me from launching into major swear-age) to get as many calories as I can, but it is harder than it looks believe me!
Just you try to get enough calories in you when you have a tummy that can hold 6 oz at a time (up from 2 thank you very much), but nothing you eat can be high in refined sugars, fats, or be too terribly hard to digest. No red meat, no broccoli, cabbage, beans or other gassy foods, no overly stringy foods like celery, no ice creams, or gummy products, no soda or carbonated beverages, and no chocolate. (sob) Don't some cultures survive on chocolate alone? Well if they don't - they should.
See normally I really wouldn't care about getting " too skinny" other than my Hubby worries, but the thing is, my head decides to go all swimmy and smack itself into the floor at all odd times and places and i do a rely good imitation of those cute little goats Carrie flashed on Mythbusters.

I tried those little glucose drinks diabetics use to try to head these things off, but I doubled over almost immediately with really bad tummy owies (as Ben would say) - and I STILL fell flat.
I guess the good thing is that the kids aren't scared of it anymore. The first few times were bad for them, but now they very casually yell from the foot of the stairs, "Daaad, Moms on the floor again".
Ah but in retrospect, I'm here to belly ache, so it can't be all bad.

School is starting!!! I have spent my week (trying to) gather moving estimates, getting kids backpacks and school supplies ready, and doing the annual "pass down". That is where we go through all kids clothes and determine if that favorite T shirt is ok to pass down (hence the name) to the younger brother or if it is just plain dead on arrival. This year there seems to be lots of DOA clothes. Or maybe I am just too lazy/tired/overwhelmed to try to refurbish them enough to make it one more year. Eh, right now I am OK with that.

Lunches are another big thing to prepare, so for those of you who have too many kids to buy lunches for without going to that really nice place where loan sharks live, this is for you. But I do warn you it is heading into the kinda weird, OCD territory that many moms/dads of Jedi kids become so immersed in.

Some busy moms/dads just choose to have their kids buy hot lunch. And that is OK if you can afford it. If you can't, look into free or reduced cost lunches. If you you don't qualify for that, read on and I will try not to bore you out of your skull...

As a mom who has her good days and her bad days (that's universal by the way, not just confined to moms fighting the "c" word.) I have found out a few things that have really helped me. First and foremost, conserve every bit of energy you can. I am not saying be a lump, that leads to depression and really flabby butts. But when you do have energy, make it count in all the right ways for when you don't. And do it in ways that won't break your bank account.

OK so you have decided to make your kids lunches. Great. You run into pitfalls almost immediately.

Those little individual sized servings of chips and puddings and crap are also about three times the cost of big family size bags and quite frankly if you add it all up, if you go that route, you are spending ALMOST as much as you would just sending the kid with hot lunches!

So get the big ol' Costco sized bags.  I am not advocating sending a big family size bag of chips with your kid as lunch. Although they might find it really cool.

What I do is  get a whole passel of sandwich bags and divvy that sucker up when the kids are at school, or in bed or when I have a few minutes on a slow Sunday afternoon. It is something I can do while I am sitting. I then put all these little bags into a zip loc or grocery bag or whatever. I do that with goldfish crackers, cookies, fruit roll ups - what ever. Then I put all the big bags into a big bin and stick it into the top of the pantry. Come time to make the lunch, I grab 4 of everything (remember 4 boys) and throw together 4 sandwiches, toss in a piece o' fruit and a bottle o' water and voila, 4 lunches in 5 minutes or less. Whatever comes back home goes into a separate basket, and that is the kids "snack basket"  they can peice out of whenever they get the munchies.

When I want to take even more shortcuts I skip the sandwiches, and put 4 or 5 chicken nuggets per bunch, wrapped in aluminum foil and all stuck in a bag in the freezer. Pizza rolls, corn dogs, pumpkin muffins, whatever makes it so I don't have to go the sandwich route. On the morning of, I  shove the aluminum foil packets in the oven or toaster oven while I am getting them breakfast or making sure they don't have seaweed growing in their teeth. Then when the timer dings stating to the world said nuggets are done, I start making lunches. My record is 4 lunches in 2 minutes. Not too shabby.

With packing, getting IEPs ready for the out of state transfer, as well as all the nice doctor letters proving to the school system that my kids need services, plus all the normal stuff of running a household ,  AND the fact that my energy is somewhat limited, I am gonna take short cuts where I can.

Hey, I know what you are thinking. Either, "wow, what a weirdo" - or   " OCD isn't so bad, maybe I'll try it.". If you have more than 3 kids, special needs or not, I'd definitely recommend the latter.

I am a sick sick person . Let's Just get that out of the way early ok? Ok.

Well with all the moving and meeting new people it becomes inevitable they become curious about the large scar running vertically down my neck. I have stopped trying to cover it. Most people who know me totally forget it is there and act a bit confused at first as to why the odd stranger would be trying really hard not to stare so obviously at the general vicinity of my chin. I will let those of you who may not know me as well in on a secret. I have not forgotten it is there and I don't mind a bit if you ask. I might be different from others with a big honkin scar someplace glaringly obvious, but really I don't care. It gives me a a chance to mess with you. Ok let's try this out. Ready?

You: oh my gosh what happened!
Me: (one of the following at random)

1. Wicked bad bar fight. You should see the other guy! ( gotta credit my neighbor coming up with this one)
2. Rodeo clown accident. Had to change careers after that one.
3. Terrible harpsichord incident. (holding up hand, closing eyes and turning face away) toopainful. can't. talk. about it.
4. Lantern shark attack. I was the only survivor.
5. I ran into a door.
6. I got ran over by a rickshaw in L.A. Dang crazy California drivers
7. yo! 65 points street cred ma brotha!
8.(very emphatically)NEVER get between a moose and her calf.
9. Quilting accident. Those needles are MUCH sharper than they look.
10. I fell on a really pokey cactus

Eh I think those'll do for now. If you think of more let me know , I'll add 'em to the collection.

In the meantime, I will continue to giggle evilly at Others expense.

Hey we have already established that I am a sick sick person! Don't act so shocked ! Gheesh.

In the grand scheme of things life is great. In the short term, I have debated bout changing our names to distinctively Romainian sounding ones and purchasing a wagon with lots of tassels. That IS what gypsies do right?

Well long story short, Carys work was being a butthead about the time he took off to take care of me last year. "But legally they can't do that under the Family Medical Leave Act." you say. Ah yes but they weren't being too very "legal" when they made some very dumb decisions. Hubby opted to go to a different company. One located in the far off wilds of New Mexico.

We are still undecided about whether to pursue legal options. We hate the sue happy culture that has been so fostered in this country but we also worry that if it happened to us, could it happen to someone else not in such a good position? Cary is extremely good at what he does (long story short - he fixes robots - as my 6 year old would say) and can find work because of his vast and unique skills. What if this had happened to a less skilled worker?

But on the other side of things, we have a very different view of just how precious life is now and wasted moments are almost a sin to us. Priorities are such that family, kids and home are what matter. Not court cases.

Oh yeah and as of last PET scan, I am still N.E.D. (No Evidence of Disease)

click on the kitty for the all important happy dance