Reality is sometimes too real…

I wish I had some amazing awesome news to share with readers.  I would love to post a message saying that I had an appointment with a doc who might have a solution to the esophageal spasms.  I would be so thrilled to post these messages but, as the song goes, the thrill is gone.

I can post that I am a slightly better place than I was yesterday.  Yesterday, I felt like Eeyore from Winnie the Pooh.  I certainly had that dark little cloud hanging over my head.

I think I can usually handle most challenges with a moderate amount of grace.  I like to think that I am more optimistic than pessimistic.  I certainly can’t claim to be much of an optimist right now.  I am noticing a downward trend on the emotions.

How do I fail at optimism?  sit back and  let me count the ways (while mustering as much humor as I can to find something positive about each one).

1.  My car tires need to be replaced.  Another flat tire and the guy changing tire said same thing as last guy – they need to be replaced as soon as possible.  I figure I might be able to squeeze that into my budget in 2014.  On a positive note, I opted in on the auto insurance with roadside assistance and it has paid for itself already.

2.  Medicaid is not approving two medications that I take daily and I don’t have an extra $469 a month laying around to buy the medication.  Waiting for docs office to submit the paperwork for approval but also realize that even with letter, the medication still may be denied.  The medication is for my narcolepsy so meanwhile, I am unable to sleep and unable to keep alert during the day.  As much as I hate the vampire craze, I would make an excellent vampire because narcolepsy causes your body to be confused about when you should be sleeping and when you should be awake.  Plus side…being in a constant fog takes the edge off of dirty dishes and daytime tv.

3.  TV broke.  I am now watching while crocheting on a little crap tv.  Yeah, in the grand scheme of life, it might not sound so bad but when you consider how much time I am hooked to feeding tube/iv pole – it certainly helped pass the time.  Positive…squinting makes me look more interested in what is on tv.

4.  Everything is sagging and it is disgusting to have this excess skin hanging everywhere.  Not quite the mental pic anyone wants and it certainly isn’t helping my self-esteem.  Halloween is the only day of the year when bat wings might possibly be in vogue…that’s about it on positive and it only counts if you actually dress up as a bat on Halloween.

5.  Blood levels are still low (and so is energy).  The iron/blood infusions brought the numbers up but not up to normal levels and until they drop back to danger zone, no treatment.  This means chronic fatigue, lightheaded, blah blah….plus side, I don’t HAVE to be awake during the day.  Not eating also means no junk food which means my cholesterol levels are fine and I don’t have to worry about gaining weight over the holidays.

6.  Making too many scarves compared to the number sold.  Crocheting keeps me occupied but I need to sell the damn things.  Donated some to charity that I made with donated yarn.  Yeah, it feels good to do this and I will continue to do so but it doesn’t help out financially.  Positive (besides the obvious benefit of helping others), I can call myself a hooker (crochet hooker that is; get your mind out of the gutter).

7.  Computer ready to croak – starting to give blue screen of death more than once each day.  Sacrificed a chicken today so that might buy me a week or two.  Positive to this is that I am not sitting at the computer long enough to cause tube/stoma discomfort and the chicken didn’t suffer much.

8.  Beginning to resent having to shop for groceries and cook for the boys.  While I am glad that what I make the boys say tastes great – I get irritated that I can’t eat any of it.  Chew and spit isn’t even much of option because taste buds seem to have finally crapped out due to the ongoing bile vomit.  Food is even beginning to smell gross to me.  On the plus side, my dentist said my teeth were showing no wear, cavities and hardly needed cleaning.

9.  Nutrition doc has recommended that I hook up for 2 hours around noonish to handle the low blood sugar issues that happen in the afternoon.  Gee, 2 more hours trapped to the damned tube.  On the positive side of this – I can keep informed about “who’s the daddy” by watching the Maury show at 1pm.  (shoot me if I ever seriously find anything positive about the Maury show)

10.  I am becoming more isolated each day and with winter fast approaching, I will be going out less and less (I have no cold tolerance anymore).  On a positive, I can save money on deodorant.  Yeah, that one is weak but there’s not much positive about this one.

11.  I am losing hope and starting to fear that this is what I can expect to experience for the next 20 years or so.  Damn, no way I am going to be able to turn this into a positive – not in my current state of mind.  I know many say that I should that I should be content that I am alive.  Days like these I feel that “existing” is not a substitute for “living”.  Yeah, it is better to be alive rather than dead but this is not to be confused feeling fulfilled or living life.  It’s proving harder than ever expected to find my new path.

12.  If I hear one more person tell me about how someone they know had cancer and are just fine now, I swear I will not be able to restrain myself from causing them physical harm.  This is not helpful…all it does is make me feel like I can’t even get surviving cancer right.

And if this wasn’t bad enough – did you know that you can kill 2 hours by using tweezers to remove all the hair off your legs one hair at a time.  For the record, it is actually more pathetic than it sounds and not a recommended activity at 1:30am.   It also causes very irritated skin the next day.

I fear it is going to be a long dark winter.

7 hours in ER

Ugh…I will share more later…I am going to bed (aka recliner).

Life with Feeding Tube (j-tube)

I wanted to give it a little time before posting about life with a feeding tube (j-tube).  It’s been a month since I had the feeding tube inserted and I have become somewhat accustomed to the routine.  A new tube/connection devise was shown to me last week and I am waiting to find out the nitty gritty necessary to change to this tube option.  It is a very low profile option that will definitely be a positive change.  I will go from the current attachment with 12 inch hanging tube to a button attachment with no fixed tube (tube is attached only when connecting to pump)

<— current

future  —–>

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There isn’t any real difference between the j-tube and TPN (iv) as far as the routine – the pump for the j-tube is bigger/heavier and I have to be hooked up for 14.5 hours compared to the former 12 hours.  Before and after hook-up I have to flush the tube which often results in cramping but I now know what to expect so I am prepared for the cramps.

I have also become accustomed to the iv fluid therapy which involves another pump for 4 hours delivering a liter of fluids so I avoid dehydration.  The pump times overlap for 2 hours and it is a royal pain to carry around the two pumps and tubing – but I am learning to manage.

Once a week a visiting homecare nurse (I have Mary back – she’s the best!) comes over to change the PICC (iv) dressing.  While she is here, we also change the j-tube attachment devise.  This is a real challenge for me because of the mental issues I have with the tube sticking out my abdomen.  There is some “seepage” from around the tube that I have “issues” with because it is too much like pus.  The tube “tunnel” won’t heal as long as the tube is in and the seepage will be present as long as the j-tube is inserted.  Each night, I clean the tube insertion area which is minor.

My main complaint is the constant fatigue.  If I could just feel better then maybe this whole situation might not be so difficult to adjust to.  I am used to the nausea and vomiting but I just can’t get used to being so exhausted all the time.  I met with the nutrition doctor on Thursday.  My hemoglobin/iron levels remain low (could be source of fatigue) and she has referred me to a hematologist.  They are changing my formula to one with more iron and protein.  The iron deficiency has resulted in some painful tongue sores but I have some prescription medication that I “swish and spit” which has helped.  The stuff is vile and it coats the tongue and lingers way too long.  I am sure that I will need some additional iron infusions and I am impatient to get them started so I can recover some energy.

I am slowly accepting that the j-tube/iv fluids may be my “normal” for awhile.  It’s been challenging to find that acceptance because it still feels like I am giving up.  I still have hope that I will eventually be able to find someone who will be able to address the esophagus spasms so I can drink liquids again.  I know with my slow motility that eating/drinking may always be a little off but if I can consume liquids, I can at least say good-bye to the j-tube and iv fluids.  The most difficult aspect is being patient until that specialist can be identified.  Hope remains present but it is a significantly dimmer light then it used to be.

I am keeping myself occupied by crocheting ALOT.  I have signed up to exhibit my high quality winter accessories at some craft shows in October and November.  Not only does crocheting keep me occupied but I am hopeful that I will be able to generate some much needed funds.   Check out the items and please pass on the website to your contacts if possible.

Enviable Creations

I am also writing and I have a goal to finish one of my book manuscripts by the end of October.

Oh, did I mention that some of my parenting stories have been published?  A  friend just published “Mug of Woe” which includes a chapter by yours truly.  You can purchase this book through Amazon.com (I don’t get any financial benefit if you buy – but I still encourage the purchase because it is a funny book).  Link to book is Mug of Woe

Bottom line – I am doing okay.  This is still a journey and I don’t know where the road will take me but I feel like I am almost comfortable enough to try to mentally engage “cruise control”.    I have appointment with primary doc next week and will continue to challenge him to expand the medical resources available.  My tentative acceptance of my current “normal” does not mean that I will not continue to seek a better solution.

What?

I was getting ready to start a post and realized it is almost 2am.  So, instead of a long rambling post about who knows what, I am going to bed.

Stay tuned for update soon.

 

Dark clouds lifting

Been in a bit of a funk the last few days.  I tried to deny it, ignore it, dismiss it, bury it…but in the end I have to accept it.

Upcoming surgery is inevitable.  Weeks of recovery ahead of me as well as the pain that I know will be present for a while.  Last time, I went in blindly, not knowing what to expect.  This time I go in fully aware.  I am very reluctant to go under the knife again.

I keep thinking…what if.

What if they go in and find something more serious than scar tissue?

What if they don’t find scar tissue?

What if they fix the scar tissue and the surgery creates new scar tissue?

What if they fix it but I still can’t eat?

I am even worried about what if they fix it and I am I “cured” and I can’t find a job?

I know the Tibetan Dalai Lama saying “If you have fear of some pain or suffering, you should examine whether there is anything you can do about it. If you can, there is no need to worry about it; if you cannot do anything, then there is also no need to worry.”

I realize that worrying is a waste of my time.  I know I can’t not get the surgery…blah blah blah.  I know all this but that knowledge doesn’t bring comfort.

It hasn’t helped that I am having a lot of problems sleeping.  I find myself up until 3am even after taking a sleeping pill.

I know that some of the issues stem from the fact that I have not really found acceptance with the past year.  That and the fact I am so pissed off that 9 months of this past year could have been avoided had the surgeon not been so insistent that there wasn’t a partial blockage.  I’ve always had problems accepting anger in myself.  I know there is anger in me but not sure how to release the anger.

Some people are transformed after cancer.  My life has been turned topsy- turvey and my fragile hold on my finances ripped away.  My life has definitely been transformed but I don’t feel I have – does that make sense?  I don’t feel the missing stomach.  I don’t feel sudden release on life and joy at simply being alive.  I still find the little things getting to me and I still get frustrated.  I waste some days watching so-bad-they-are good B horror flicks and get nothing useful done.  I take long naps out of boredom and tiredness.

Where is all the energy and motivation and sense of “I am going to dance like no one is watching?”  Where do I go pick up my energizer bunny batteries?  When do I “change” into someone else?  Someone who confident about where they want to go in life – I thought I once knew but now realize I don’t.  How do I sign up to follow my passion (after I sign up to discover my passion).  Who am I kidding besides myself?  I got the feeling that I am not gonna get one of those life-altering moments when everything becomes crystal clear that so many others get after a cancer issue.

Mentally, I am still the same person.  Mentally, I am okay – really, I am.  I am not depressed – I know the clinical signs and they aren’t present.  I am just not peachy-king either.  I am simply, and physically, 365+ days beyond “the event”.  This is where my mind is still holed up and hiding.

This weekend I started cleaning out the apartment in prep for a possible move to another apartment.  I find that I am comfortable (first time ever) giving a bunch of  “stuff” to goodwill.  I went from 6 boxes of Christmas decorations down to 4 boxes.  I’ve gutted one bathroom and put all the nick-knacks in bag to donate.  I’ve been feeling closed in and a need to “cleanse” my surrounding area.

I am rambling and feeling a little woozy from the sleep medication.  Maybe I will take time write – or visit FB and LI to visit with old/new friends.

Maybe I will go on a “spirit quest” and look for the spirit that should be in me.  After all, if I am to spend the next 45+ year left on planet, I want to know how to do it right – where to go, who to see, things to do, and most importantly – who funds this?

Or better yet, get all my friends gathered around and have some type of intervention.

I have wasted so much of my life , I know I can’t reclaim the past.  I can only try to embrace it

I want to feel excitement

I want to feel free.

(edited because the original dribbled off into meaningless gibber)

Another hospital visit…but luckily not mine!!

I was very pleased to return a very special favor to a good friend.  She needed a ride to the hospital for a routine colonoscopy.   Considering that I have already “been there/done that” I was able to keep her thinking positively.  Everything turned out okay and she tooted her way home in my car blissfully mellowed from the medications.

I will be planning another hospital visit myself…unfortunately.  I will be meeting with the surgeon on January 13th to discuss when to plan the 2nd surgical intervention.  My case was presented to the group of GI docs and surgeons last week.   It was a doctor group consensus that I have a partial blockage that needs to be resolved.  This will solve part of the problems I have been struggling with over the past year.  I am currently on a low starting dose of a  medication that might address the other problem – esophageal spasms.   The medication has a downside of lowering blood pressure and mine is already a little low.  Today, they upped the dose so if there are going to be problems they will probably be present soon enough.

They also bumped me from12-hour pump cycle back up to a 14-hour pump cycle because I was having some serious sugar crashes during the time off the pump.  So, I will be monitor both my blood sugars and my blood pressure a couple times a day.

I am plugging along on TPN/iv nutrition.  I’ve had problems with swollen joints, water weight gain, hair loss, bruises, cold feet and hands, sore muscles…..but I know it make take some time to tweaking my formula.  I am trying to start a very light exercise program right now to build up so much of the muscles lost during the last year. I do have a little more energy during the day – I only have short cat naps now and then instead of sleeping for hours at a time.

I’ve decided not to post anymore about the surgical issue until after I meet the surgeon on the 13th of January.  DON’T PANIC!  I will still be posting but not about the upcoming surgery.  I am not in a good place about the surgery and my chances for “complete recovery”.  I will chat about this more after I meet with the surgeon.  Right now, I just want to keep my mind focused on other things.  I need the mental strength about for the holidays.  They are going to be draining me as it is – emotionally, physically and financially.  Today is the last day of school for 2 weeks for the boys…oh joy…I wonder how many minutes it will take until I hear the all-to-familiar “I’m so bored”.

I will be posting daily – my goal!  These will be general postings about my observations of the world around me.  I think you will enjoy my twisted displays of humor.