The cure is…

I have been struggling with a social predicament.  Years ago when I was diagnosed with sarcoidosis, I started to receive unsolicited “advice” from others.  Then came the cancer diagnosis and the amount of unsolicited advice multiplied tenfold.

How should I respond when someone starts telling me about some “miracle cure” that they heard about from the brother-in-law of their co-worker’s second cousin twice removed?  What should I do when I get a personal (not spam) email with advice to “juice” or “read so-n-so’s book” or take some herb, or buy a prayer crystal?  Recently the advice is about supplements and strange concoctions that are practically guaranteeing that my body will think that my stomach is still present.  There are shakes and supplements that will enable me to forsake all conventional medicines and promise unlimited energy, bottomless wisdom, enhanced memory and even the gift of playing the piano.  Why, if I combine some of them, I might be able to dance in a ballet in a few weeks or acquire enough wealth to make my friends envious.  Not to mention that I can also forsake my female parts and grow a large hard penis to compliment my full head of hair.

There is never any scientific research on any of these (they claim it is because of a conspiracy between medicine (what would doctors do if we can be cured without their help) and the evil drug companies (who exist for the sole purpose of becoming filthy rich off our suffering).  Why some of these products cost a mere three payments of $39.99 (plus shipping and handling).  No FDA approval is needed (the FDA is linked but not confirmed to be part of the conspiracy theory).  Some of these cures are currently in your kitchen and all you need to do in order to harness their power is purchase the instructions (often in the form of a book, a manifesto or an email).  Some even imply that only those who have a death wish would let these miracle cures slip way.

If I am told one more time how BillyJoeJimBob was cured of his terminal cancer just 2 days prior to his death by removing dihydrogen monoxide completely from his environment I am going to scream.

(for a giggle go here http://www.dhmo.org/ be sure to follow the link to cancer.  Then surf over to here http://en.wikipedia.org/wiki/Dihydrogen_monoxide_hoax – guaranteed to bring you a smile)

So, how should I respond to these (mostly well-meaning but uneducated) people?  Do they really believe that drinking pomegranate juice will cure everything from cancer to dandruff?

Some of my current response options include:

1.  Ask them to purchase said product so they can become credited with saving my wretched life

2.  Look at them with horror and tell them that NASA has banned that product from terrestrial use due to a connection between its use and the planets aligning

3.  Shake head sadly and show them the stories of Big Foot and whisper “side effects”

4.  Tell them that crystals are government mind probes and to avoid this I would have to wear an aluminum foil hat all day to keep my thoughts private

5.  Tell them that the colon cleanses actually implant alien seeds in our bodies and that people who have had the colon cleanse also experience loss of bowel contents

6.  Reveal that asparagus makes your pee smell and might be linked to nasal cancer and/or toilet bowl scum

More often, I am a wimp and I simply look at them, nod my head and mutter something along the line of “oh, I will have to check that out.”  Of course that doesn’t help when they are the ones selling the product (mind you – they claim only to make a small amount of money as the real profits go to “research” for further miracle uses – after all there are millions of bones broken each year that could be prevented and thousands of paper cuts to be healed).

Not all of these cures cost money.  In some cases, simply forwarding the prayer on to 10 of your friends will not only guarantee your survival but will curse your friends if they do not.  You can acquire the power over life or death.  Wow, think of how much money you could make if you charged your friends for each time you don’t send them the latest prayer cure.  Stand aside Oprah, we have a new Unangel Network ready to give you a run for the gullible dollar.

Sadly, though, many would take on a financial burden sure to challenge even Bill Gates if they thought they could save themselves or a loved one.  Everyone wants to believe in a cure.  By trying anything/everything maybe some can find peace knowing that no rock was unturned, no fruit unjuiced, no shark cartridge unground, no apricot seed unpitted, and no deity ignored.

Ghost Turds

Considering that Halloween is just a few days away…

There aren’t many subjects that are off limits for me.  Mucus is the only one I can think of off the top of my head.  I suspect I am missing the gene that triggers a momentary pause before blurting something out.   I am fortunate that what I blurt out is pretty witty – certainly beats the “duh…” moments.

My children, however, do not share this same gene.  They have learned over the years that I find the oddest things curious and, when I am curious, I generally talk about it.  They also know that I tend to research things that I wonder about but don’t yet know how to explain.

For example:

My son came home from school the other day and my first words to him were “I know why my turds are white.”  He looked at me and sadly shook his head.  He listened, nodded, said something like “interesting…” and then he went to his room.  It was only then that I remembered that it was my OTHER  son I had turd color conversation with the other day.

(Don’t click away, this has something to do with the gastrectomy)

Poo gets it’s color from bile and old blood cells that are discarded by the body.  Bile is important to this discarding/color connection.

The normal body excretes bile through the digestive process.  Bile salts come from the liver.  The biliary system includes secretions from the gall bladder and enters into the upper intestines just below the stomach.    Bile seldom moves up because of the stomach.  After a gastrectomy, it is very common for a person to vomit bile.  (Bile has the most repulsive taste known to earth and can burn your esophagus and mouth.)  I vomit bile several times a day…reducing the amount moving through my digestive tract.  Without the bile, the color pales.  Thus explaining my ghost turds.

You now have something to talk about during Thanksgiving dinner with the large extended family.  You can thank me later, or not.

Live or Give up?

When our bodies are invaded by a vile disease, we only have two decisions to really make – live or give up.  I know I will always choose to fight because I simply can’t give up.

I don’t consider myself any wiser than others.  I wouldn’t presume to be the best one to give others advice…..but I would like to share with you my thoughts about living.

Dylan Thomas wrote:

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

(The rest of his poem can be read here…http://wikilivres.info/wiki/Do_Not_Go_Gentle_into_that_Good_)

My thoughts on how to live…

Keep fighting. Keep enjoying life. Find joy in the mundane and grace in the moment. Do something new everyday even it is something as simple as a small random act of kindness. Let go of regrets. See wonder.  Say what needs to be said. Don’t leave anyone doubting your love. Make your words rich with wisdom and crunchy with humor. Smile first. Laugh often. Don’t hold on to old memories – keep creating new ones. Share with others the possessions you want them to have so you can bask in the glow of their pleasure. Tell others about the moments of your life that took your breath away or caused you to hold your breath. Forgive others for being human. Forgive yourself for the same reason. Spoil yourself. Take time to see – each sunrise and sunset, each person you come in contact with, every color that saturates your world. Listen and be listened to. Surround yourself with robust scents. Savour everything.

No one knows how much time we have on this earth so live each day as though it is your first (never your last).

I have a personal motto “You may not be able to change the world, but you can choose to be a world of change  for one person.” Each day, find that person and change their world.

ER visit

Earlier this afternoon I was outside visiting with a friend/neighbor.  I was wearing only socks on my feet (do this quite often).  Suddenly I felt an intense stab of pain on the bottom of my foot.  I thought I stepped on a piece of glass but it was even more painful than that.  I whipped off my sock expecting to see blood gushing and there was a small red dot.  “What did I step on?” I wondered out loud.    My friend saw a bee crawling away with its innards hanging out its hiney.

A bee!  Crap, I am allergic to bees.

So, I go into the  house (just my 15 year old son home with me) and call 911.  I have avoided bees all my life because there is family history of bee allergies and because I have severe reactions to honey and bee’s wax.

Ambulance arrives as my mouth is drying out and swallowing is a little rough.  Heart rate is over 100.  Blood pressure is 166/50.  So off we go to hospital.   I give snapshot of medical history to paramedic and later to nurse.

Get shot to counter the allergic reaction.  The nurse wants me to swallow some meds and I said that it might prove to be challenging because of vomit issues.  “Try” the nurse says dismissing my concerns.  So, I tried.  Sure enough almost immediately after swallowing I am vomiting.  Vomit jag lasts a couple of minutes (I hate it when it goes on long after everything is purged from system).  Nurse is like “are you okay?”  Gee, my body is violently trying to expel my intestines though my mouth…what do you think?  I couldn’t even answer her as I was vomiting.

I hear doc say to a nurse (they were at the desk not in the room), “What do you mean she has a PICC line?”  Gee, doc, didn’t you listen to anything the nurses or I  have told you?  So, they give me the meds through my PICC line.

Then the nurses started asking lots of curiosity based questions about the gastrectomy.  Normally, I don’t mind some questions but my foot was swollen and throbbing; I don’t want to talk about my gut right now.  One nurse asked if I had the surgery for weight loss (like it is any of her business)…she seemed a little taken aback when I explained that it was a total gastrectomy due to stomach cancer – no vanity involved.

Doc walks in and sees vomit basin with meds in it and asks “why did you vomit”  so I explain again.  She said “oh…yes…a gastrectomy”.   She walked away never to return.  After some time to make sure that I was recovering, the nurses sent me home.

So, here I am, foot throbbing and swollen.  They said it could take a few days for the pain/swelling to subside (lovely).

The friend who picked me up commented “that was the shortest ER visit you have ever had”.  I found that comment amusing but also a little distressing.  How sad is it that my ER visits are not simply events but they have now moved up to being categorized by time.

I was almost at the 5-month mark of no ER visits – now to be felled by a vile little insect.   Goes to show that not everything centers around the gastrectomy.  Now that I think about it, it strangely makes me feel a little better.  Go figure.

Rump Shots aka I was rear-ended

Now I know my friends will read the title of this post and start some wickedly twisted tales weaving through their brain.  It was precisely why I struggled trying to come up with just the right title.  I love to torment my friends.

Reality is that this post is actually for everyone and can be of use to all.  Let me explain…

Since removal of my stomach, I have had to get monthly B12 shots.  [Educational Alert:  Vitamin B12 is absorbed in the small intestine with the aid of a stomach secretion called intrinsic factor.  Loss of intrinsic factor results in a vitamin B12 deficiency in patients with a gastrectomy.  Patients who have had a gastrectomy will generally require regular vitamin B12 shots.] Until recently, the nurses have given me the shot in my arm muscle because B12 needs to go into a muscle.  A B12 shot in the arm is just like getting a flu shot in the arm – the arm can ache for days.  I dread the monthly B12 shots.  The idea of a double whammy (B12 and the flu shot) was similar to the dread that builds up as your dentist appointment approaches.

(Keep reading…we are almost at the good stuff…don’t let the dreaded “dentist” comment frighten you away.)

When I went in for my last B12 shot, the nurse asked me if I had ever received the shot in my gluteus maximus*.  When I told her “no” she said that I should try it.  She explained that the rump hump does not have the same type of pain receptors as the arm and that you don’t use your hinney muscles the same as you use your arm muscle.  She swore that I wouldn’t feel the shot for more than a minute afterwards.  SHE WAS ABSOLUTELY CORRECT!  Other than the initial stick, there was no pain.  Even later that day and the next – no pain.

Right now you might be thinking what this has to do with you (don’t be too cheeky)…this is the good part.  The no-pain-if-you-take-a-fanny-hit applies to the flu shot as well!  Yep, you read my words correct (go on read them again The no-pain-if-you-take-a-fanny-hit applies to the flu shot as well!) This year when you get your flu shot ask for a posterior poke.  You don’t have to worry about revealing too much of your backside either – just a little exposure right below your waistband is all that is needed.  Voila! No pain!

You don’t have to thank me now, but later, after you have experienced the ass-mazement yourself, you can flash me a bottoms up message.

* Tushie, Butt, Buns, Rear, Caboose, Taillights, Derriere, Fanny, Behind, Ass, Keister, Booty, Hinney, Hind-end, Rump, Bottom, Bums, Cheeks, Seat warmer/Bench warmer, Backside, Trunk, Cushion

Esophageal Motility Test

I wasn’t sure if I should title this post “Esophageal Motility Test” or “Mulling it Over”.

I decided to focus on the procedure first and then my little “grrrr” moment later.

I received word from the GI specialist that he wants to perform an esophageal motility test (manometry) because of the spasms that were seen in the small bowel follow-through test on the 12th.  The  manometry is performed at the hospital’s GI lab.  There is no sedation involved unless I can’t tolerate the catheter.  It is a small one that goes through the nose.  The test takes about 15-20 minutes – if all goes as planned.

Here is a link to the procedure details:

http://gicare.com/Endoscopy-Center/Esophageal-Manometry.aspx

He also told me that he sent another message to the oncology surgeon who is “mulling things over again”.   Gee, I wonder if she will again simply dismiss everything as being slow.  She dismissed the idea that there might be a small partial blockage twice now despite two tests that seem to indicate otherwise.   I don’t know if a partial blockage can account the symptoms not related to the spasms – I have a feeling that there are a number of issues going on and that finding all the solutions may take some time.  But, if they can fix two issues (blockage/spasm) then there seems to be hope that they can find and fix other issues.  Yes, I am wearing my Polly Anna glasses and I am going to keep them on for a while.  Reality is gray and I would much rather see in color today.

On a side note and very amusing in a very dark twisted way…since Monday I have had serious plumbing issues at the apartment.  Roto-Rooter has been out (all day Monday, all day Wednesday, and again on Thursday).  Seems the problem is not easily diagnosed and that they may have to dig up the pipes and even tear down two large trees.  They have sent cameras into the pipes and due to the piss poor pipe layout they can’t see  where the problem is located.   Meanwhile, there is constant backup in the tubs and toilets.  It is 9pm and I was just told by maintenance that another plumber has been called and may be out tonight (I have about 6 inches of standing water in both tubs and the toilets don’t want to flush correctly).

I had no clue that what I have could possibly be contagious and that it could spread to real plumbing.  The more I think about it the more amusing it becomes.  Maybe the plumber will have to mull it over for a while before he decides there is a real problem. Oh, I am just cracking myself up.  My youngest son finds no humor and thinks I am losing it…maybe he is right.

Is it torture or desire?

Today was a very low energy day…lower than most.  I simply did not have the energy to do much more than nap on the couch and watch tv; which brings me to today’s subject.

I found myself watching the tv show “Man vs Food”.  Now, I don’t mean watching a single episode – I am saying that I watched it for over two hours straight.

If you aren’t familiar with the show; it’s about a guy who travels all over to eat at local food spots.  He often takes challenges such as eating a king kong size burger or the world’s largest breakfast omelet.  It is gluttony to the nth degree.  But, I sat there on the couch watching episode after episode.  I can’t say I was “fascinated”.  As a matter of fact, I am not sure what I was feeling.

I can’t eat right now and the thought of eating repulses me (vomit factor) and torments me (desire factor).  I used to have a great relationship with food.  I loved food.  I never ate to excess at any one sitting; it wasn’t like that at all.  But, I did enjoy food – the tastes, the textures, the feeling of being satisfied.  My son once used the phrase “mouth boner” and I only now realize how accurate a phrase that was.  Food can be incredibly satisfying, even sexual.

An addiction to food is very unlike an addiction to something like drugs.  You don’t always need more and more quantity to be satisfied.  Sometimes just a small square of exquisite chocolate was all it took to find bliss.  Other times, it was the comfort of a familiar dish that left me sated.  Unlike a drug addiction, you can never give up food cold turkey (excuse the fowl reference).  You can’t give up food entirely either.  All you can aim for is moderation.

So…there I was today…watching this man consume huge amounts of food while having some serious mouth boners.  He truly has an intimate relationship with food.  When food enters his mouth it becomes an erotic encounter of the gastric kind.  His eyes rolled back and a primal moan could be heard. You could see the passion on his face as he chewed; his chin dropped slightly and his head lolled to one side and then the other.

Time and time again today, I had attempted to swallow a couple of mouthfuls of liquids or spoonfuls of cottage cheese, soup, and even some chips.  Only the smallest of amounts stayed down and the frustration mounted.  But watching this show, I was able to remember how good food used to taste.  Watching him, I was able to remember how refreshing it was to swallow enough liquid to satisfy my thirst.  I remembered the wonderful sensation of a full-blown mouth boner.

Was it torture or desire?  Even now, looking back, I can’t figure it out.  I didn’t feel worse or better for having watched the show.

What I do know for sure is that I enjoyed the virtual sharing of a meal with the show host.  Even though I can’t eat, I was able to appreciate the sheer joy of eating as displayed.

Torture or desire – or are they the same thing anymore?

What color is your ribbon?

A friend was commenting the other day about how she felt she couldn’t wear a pink shirt without someone thinking she was making a statement about breast cancer.  She wanted to buy a green purse but didn’t want anyone to think she was a fanatic tree hugger.  She just wanted colors to be colors and not causes.

While I was consoling her (ie poking fun at her), I realized that I don’t know what color is the stomach cancer ribbon.  So I looked it up….be prepared to be overwhelmed (or dumbfounded)

http://www.personalizedcause.com/

By the way, I suppose this means that I should be wearing Periwinkle for stomach cancer even though I don’t like periwinkle and it looks terrible on me.   I wonder if you can petition for a color change? Maybe I could take on puce because it sounds a lot like the sound you make when you puke which would be appropriate for stomach cancer.

Periwinkle is a perky color – what is perky about stomach cancer?  Stomach cancer is all about vomiting and diarrhea – nothing perky there.

Who decides this stuff anyway?

My final comment on this matter – stop with the ribbons already.  If you want people to pay attention then color the things related.  If the color must be periwinkle then lets make all vomit buckets periwinkle.   Let’s make toilets and toilet paper periwinkle.

Now, if you will excuse me I am going to go take off my pink bra and put on my favorite rainbow jammies…What?  What is so funny?

Frustration

I received a call today from my oncology surgeon’s nurse.  I had left a message on Tuesday asking the doc about the results of last week’s procedure.   The nurse said the doctor wanted to let me know that the procedure showed slow motility.

and…

Oh, wait, there was no “and…”   That was the message.  Nothing more than slow motility.

What?  Was the doctor serious?  I was floored that the doctor said nothing about the spasms and offered nothing but “slow motility.”  Seven hours and the barium didn’t even reach the colon is more than “slow motility”.

I ended up calling my PCP and venting a little with him regarding my frustration.  He is going to talk to the surgeon and see if he can get any more information.

I am so tired of doctors telling me to come back next month…it’s been over 10 months and I am in the same suck-ass position.  I don’t want to keep living in limbo/hell 30 days at a time.

The GI doc asked me in an email if I have considered protein powder shakes – gee doc, you think if I could keep down a protein drink I would be in this mess?  I can’t keep down a swallow of water much less protein shakes.

What really riled me up this afternoon is a commercial for the medical organization they all belong to.  Their motto is “we also treat the human spirit”.  What a line of crap.

Today was obviously not a good day.  Hopefully I can find my happy place tomorrow and keep trudging along.  I am just so tired and tired of being tired.   I want to be able to move on with my life.  Sitting home most of the day napping because I can’t keep down enough food to nourish a mouse much less fuel a human body is not any life to live.  Spending the most part of two days each week at the cancer center getting iv fluids just to stay alive and out of the hospital is not “living” it is simply “existing”.   Functioning like a zombie is existing not living.  I don’t want to exist, I want to live.

Rant over…you can return to your regularly scheduled web surfing.

Glimmer of Hope?

Last week, I had a small bowel follow-through procedure.  The procedure was recommended by a GI specialist I saw at a different hospital (getting a second opinion).  There were a couple of reasons why this procedure was recommended.  The first reason was to rule out if there was a partial blockage in the intestine due to scar tissue.  The second reason was to see how well my intestinal track was working.  I had a previous procedure performed in late March/early April.

My primary care physician called me to tell me that the results were abnormal.  I wasn’t surprised because the radiologist had made similar comments during the procedure.  Unfortunately, my doc could not tell me exactly what the results mean because that is not his area of expertise.  So now I am waiting to hear back from the oncology surgeon and/or the GI specialist.

What I do know – they saw lots of reflux activity (no sh*t Sherlock – I vomit whatever I try to eat/drink immediately or very soon after).  The contrast stayed in the upper area far longer than anticipated (this does support the sensation I get when I am able to eat even a small amount of food/drink that it seems to “sit” by my breastbone for hours).  After 7 hours, the barium still had not reached my colon – way too much time for so little progress.

What this might mean…

1) The vagal nerve damage (necessary when removing the stomach) is causing some of the problems.  This is considered “functional”.  Downside to this is that the vagal nerve can’t be fixed and won’t regrow.  This means that what is happening is permanent.  I am not sure what can be done to improve this or if anything can be done.   This would be related to the slow movement and not the nausea/vomiting/reflux.

2) There is a small partial blockage that is causing the slow movement.  This would be considered “structural” and a possible fix might be available.  They could reduce the blockage.  What this wouldn’t help is the nausea/vomiting/reflux.

3) The reflux is from spasms related to the esophagus.  There might be possible fix.

My doc said it was okay to be “cautiously optimistic”   but limit myself.  All the results indicate is that my system is abnormal they don’t indicate if it can be fixed at this point.

To be honest, I was almost thrilled when he told me that the results were abnormal.  Finally there was proof behind what I have been experiencing for all these months.  I look normal on the outside but inside my system is not normal.  It is almost a feeling of vindication.  Now that they see the problem, maybe someone will work a little more to find a solution instead of telling me to “come back next month if things don’t improve”.

I can only hope that this means there will be a direction for moving forward.  I do realize that this might not mean that there will be movement forward, but at least we know where to move if movement is even possible.

It’s my first glimmer of hope so I am going to turn off all the lights and let my little glimmer shine bright.