Whoa, did I really post that?

After reading some of the comments and emails received, I had to go back and re-read my post from yesterday.

Ouch!  I didn’t realize how harsh my words were about the kids.  Venting a little too much perhaps.

They aren’t always as bad as I posted – those were simply extreme examples from the past few weeks.  I have talked to my older son and he has tried to understand but it stresses him and he doesn’t know how to respond so he avoids the subject which comes off as being indifferent or callus.

My younger son isn’t a unfeeling child, just a typical 13-year-old.  He actually watched me hook up the IV nutrition today and seemed momentarily interested.

My daughter is off at college and so our phone conversations are generally when she has only a few minutes – and they are often focused on what is happening in her life (I don’t have many exciting or interesting things to share with her).  I don’t think she realizes how curt she is sounding and I am perhaps a little too emotional (or seeking more empathy than she is able to give me right now).

I am not saying I was totally off base last night – they still are resistant to offering to help around the house.  Tonight for example, I made dinner for all of them (plus 2 of the girl’s friends) and yet when it came time to clean up and do the dishes – no one was available to assist.  That still ticks me off.  They do take out the garbage when I ask so I can’t say they are completely unhelpful.

They all have their moments of being unpleasant and pleasant.  I do know they care about me – it’s just hard for them to know how to “accept” what is happening and I also realize that there is a lot of fear about my health and our future.  I also understand that a lot of their behavior is typical for teens their ages.

I think my post last night was a lot of venting and it wasn’t really fair of me to paint them so negatively.  They are good kids all-in-all and I consider myself very fortunate to have each one of them.  I love them and I know they love me.

So, to my kids, I apologize.  Of course, they aren’t interested in reading my blog but just in case they do someday…

Tube Feeding

iv nutrition

I wanted to wait a little bit before posting about the most recent medical “event”.  I didn’t want to post a knee jerk response venting or minimizing.  I wanted to have time to adjust a little before sharing with others.

I went in to the hospital early Tuesday morning.  There I sat…all day.  Bored to tears.  It wasn’t until 8:30pm that they finally hooked me up to my first bag of iv nutrition.  They also started me on a medication to address the esophageal spasms.  Just before bed, I felt the familiar (and unpleasant) sensations of a urinary tract infection.  If that wasn’t enough, I woke up around 3am Wednesday morning with a major headache.  They said it was a side effect to the medication and they discontinued it.  Wednesday was basically the same dull routine as Tuesday.  I ended up crocheting 9 cowls (and sold two to nurses!!).

I was released around 11am on Thursday.  Thursday afternoon a home care nurse came to my place to teach me how to hook up the pump and inject the extra ingredients into the liquid nutrition bag.  Time to be hooked up to pump = 18 hours a day.

Details about the pump and tubing:  I have a semi-permanent iv line (called a PICC line) in my upper left arm.  When hooking up the pump, I attach 4-feet (Measured – it is 6 feet) of tubing to the PICC line and at the end of the tubing is a 10 pound bag of white liquid.  Close to the bag is a small pump (around 7 inches tall, 4 inches wide and 2 inches deep; weighing about 1 ½ pound).  Set-up isn’t difficult – just a series of steps with a lot of care to keeping everything sterile.  Once I am hooked up, I occassionally need to check my blood sugar.  The nutrition bag and pump are then placed in a backpack like bag which I can carry around with me as I move about.  The only problem is that it is heavy and I have managed to forget to grab it as I have moved – stopping me in a few feet with a yank.  The tubing gets caught on knobs and chairs and well, darn near everything.  I have to put on my jammies at 6:30pm when I hook up the pump or I have to later stop the pump, disconnect, change clothes, sterilize, re-hook, restart.  The cats are amused by the soft noises the pump is making – I have to keep my eye on them as I found one cat digging in the bag and the other cat chewing on the tubing.

Over the last week, the formula has been tweaked based on blood tests and additional fluid added.  I am also down to a 14-hour pump cycle.  Once they increased the volume and pump time, I have been plagued with diarrhea.

Oh, and they did put me back on the same medication – just at a very reduced dose (no headache).

So, what’s it like?  I haven’t ventured out with the pump yet.  I am not comfortable with the tubing and the lugging the bag around.  I hook up around 7pm and I am done around 10am.  This gives me some freedom during the day.  The home care pharmacy delivers my nutrition bags twice a week (whoopee).

How am I feeling?  Physically, I don’t feel THAT much different.  A little less exhausted – I don’t nap off and on all day like before.  The light-headed feelings have gone.  The diarrhea is a downer – comes on suddenly without much warning – sometimes no warning at all.  Puts a damper on wanting to be out in public much.  I am still nauseous 24/7.  The medication has had no effect on the spasms – whenever I take my pills, I vomit the liquid.  I’ve had a few bouts of dry heaves/spasms and some discomfort resulting from them.  The bile vomiting has not improved at all – this sucks big time.

The docs say it may take a few weeks before I feel the full benefit from the nutrition as far as my energy level.

The hardest thing to get used to is nothing to eat or drink.  Even though food/drink made me vomit, it felt “normal” to try to eat/drink.  Now, it feels wrong not to even try.  I confess that I have done the “chew and spit” a few times just to get that sense of eating.  It’s not at all satisfying.  I’ve had a few popsicles to try to quench my thirst (not always the best move).

At some point in the near future (no one knew exactly when), all the GI docs and the surgeons will gather at one of their monthly meetings and my case will be presented for brainstorming.  Why it has taken 11 months is still beyond me.  I try to not dwell on thoughts like that – but I feel I have simply replaced one type of limbo with another.  I don’t have any appointments to see anyone other than my primary care physician – unless you call the “see you in 2 months” visit with the surgeon who has pretty much passed me off to the nutrition department (Oh, do you sense my irritation with this surgeon?  Trust me, the irritation is very present.).

Emotionally…I am hanging in there.  I sold one item on Ebay http://shop.ebay.com/katherinescrafts/m.html – unfortunately, it was one of the least expensive items listed.  I might have another one sold, payment is still pending.  Haven’t sold any more on esty http://www.etsy.com/shop/NoMoreColdNecks .  A little discouraged.  I guess that is the word that best describes my mood – discouraged.

I still have to shop for groceries (usually by myself – they are too busy or simply refuse).  Of course, they are first to complain if I got the wrong item or I forgot the item they didn’t tell me to get.  Each night, I fix the boys dinner – which I can’t eat.  I make them breakfast – which I can’t eat.  Thursday, I will do the traditional Thanksgiving dinner complete with turkey, stuffing, green bean casserole, pecan pie, blahblahblah.  I will watch the kids eat.  Gee, sounds like so much fun.

This current funk will pass in time.  Meanwhile, I just want to pull a blanket over my head and hide from the world.

Will trade/rent three lazy children : these children are good for spending their waking hours in their rooms playing video games and watching tv and chatting with friends on the phone or computer.  They don’ t understand why they have to do chores “because I stay home all day and nap” (can you recognize the voice of the exhole speaking through them?)  Time to get rid of electricity to their rooms.  These kids are 75%-88% useless.  Will trade for two teens who like to clean, listen to tv softly, will play the occassional board game with me (I get bored), will help me cook, blah blah.

As far as emotional support – wrong house.  If they notice anything that is being done differently do to MYMEDICALCONDITION, they will either get mad, make snide comments, exaggerate the issue, yell at me, call me names, refuse to do what has been asked, ignore me, mock me, etc.  I called Ryann after bad office visit.  I was crying and she said “mom, you need to stop crying – it’s really irritating and makes me mad that you are feeling sorry for yourself.”  When I told them it would be a while longer before I can think about looking for work – all of them made a snotty comment about my inability to make money – and how much it is affecting their lives.  I’ve tried to explain but I am tuned out or told to tell someone who gives shit.  Trying to get them to at least do the dishes after a meal pushes me to my brink.  I’ve ended up doing just to shut their nasty mouths from continuing to flap.

This current funk will pass in time.  Meanwhile, I just want to pull a blanket over my head and hide from the world.

Waiting for Hospital to Call

Waiting to find out when I am to go to hospital for TPN setup.  It takes two days of monitoring to get fluid content and speed of infusion established.  Could be Tue/Wed or Wed/Thurs or Thurs/Friday.

Talked to staff on Friday – they are trying to coordinate with esophageal specialist to see me while in hospital.

Hope and Hell

Where to start?  There is good news, bad news, and news that is neither.

Good News:  I met with the Clinical Nutritionist on Tuesday who restored my hope for a possible cure.  He also restored my faith in the medical profession.  He is the kind of doctor you want to have on your side.  He listened, asked questions, was honest, respectful and MOST OF ALL he is not “waiting to see if things resolve on their own or pass it off to another doctor.”  He’s taking control.  He talked about actions and options.  It was such a relief.  Thank you Dr. S, you have a wonderful caring manner.

Just News:  The esophageal motility test was very uncomfortable but mercifully very short.  It confirmed what I had been saying all along – my esophagus spasms every time I eat/drink forcing everything back up instead of down.  This means that there are options to try in order to stop the spasms.   It’s good news that they found something but not good news that they found something – know what I mean?

Bad News:  It seems that there is a more significant problem with my upper intestine.  It’s not working.  It could be part of the intestine or all of the intestine.  It might respond to treatment (meds, surgery, ?) or it might not respond.  Dr. S is consulting with others to determine how to approach treatment options.

Bad News:  Since it is clear that the intestines aren’t working, Dr. S is going to put me on IV nutrition (TPN).  I will need to go into the hospital for a couple of days as they adjust the fluid content and pump speed.  Lots of close monitoring and labs.  I will at least be getting some nutrition and I won’t have to go to hospital twice weekly for fluids.  I should have more energy and feel a little better.

Really Bad News:  I may have to be hooked up to pump for 12 – 18 hours a day…ugh.  For the next couple months (or until they fix the intestines and esophagus), I cannot eat or drink anything (not that I was having a lot of success in this area).  Nothing by mouth – NOTHING.  This will be hard – especially now that the seasons of gluttony are starting.   I don’t know how long my intestines can remain unused before problems arise making the treatments harder and harder to implement.

I will probably find out tomorrow when my hospital visit will be scheduled.  I am fighting an almost overwhelming urge to go eat everything (even it if means vomiting every time I swallow).  I keep thinking – NOTHING TO EAT/DRINK for months.  It’s almost like a sense of panic – eat now – just on the off-chance that they can’t fix what’s wrong and I am not allowed to eat ever again in the future.  The bile vomiting has been really bad the last few days – unfortunately there is not much they can do about that.

I think the biggest challenge (beyond the mental desire to eat) will be the daily task of making meals for my children.  It’s been a form of torture already – now it will be super-sized torture.  Likewise, it will be more awkward going out with friends – everything seems to involve food or being at a restaurant , etc.  And the holidays…blah blah blah

Who knows where this journey of mine will go next…I am not driving and I am not sure where we are going.  Right now, I don’t even know if a roadmap exists so it will be difficult to know when/if we reach the destination.

On a side note:  I am in a financial hard spot – not enough money to cover expenses.  The specter of xmas is looming.  Hoping to provide a little relief, I created an online store to sell the scarves that I crochet.  Check it out and see if there is anything for you or someone on your holiday gift list.

http://www.etsy.com/shop/NoMoreColdNecks

Final option no longer an option

[I am scheduled for an esophageal motility test on Tuesday to try to figure out what is going on with the spasms.  It has been my thinking that if they can fix the spasms; I can eat again.  Problem solved, case closed.  Or so I thought. ]

Last Thursday (Nov 4th) I was at the oncology surgeon for my monthly visit (I usually go in, she tells me she’s surprised I am not better and that we need to give it more time, then I am instructed to return in a month).  The main purpose of this visit was to get the results of the small bowel follow through directly from her and not just the “slow” message from her nurse.  I was not prepared for her blunt assessment of my current condition.

Background:  I have been resisting the idea of a j-tube (feeding tube) because I still think that I can eventually return to some type of normalish eating.  I knew that the j-tube was a possibility should eating not occur soon enough and my body’s nutrition needs become critical.  To me, the feeding tube has always been my “final” option.  In my mind, agreeing to the feeding tube was agreeing that there were no further options so I have been against this option.

Last Thursday that “final” option was removed.

The surgeon walked in the room and rather abruptly announced that she had no idea how to help me.  That took me by surprise because she has never before made any comment that was not along the line of “just give it more time”.  I asked about the small bowel follow through and she said that it showed that my digestive track was not responsive.  I asked if it was a structural issue and she said it was more functional and that there was no partial obstruction.  I pressed her to tell me exactly what that means.  She said that I am no longer a candidate for a feeding tube because all it would do is put fluids in my digestive track and that because of the slow nature of my intestines, the fluids would cause more harm than good.  The fluids would pool in my intestines, causing me to bloat and they wouldn’t be processed either.

I remember telling her about the esophageal motility test on Tuesday.  She asked who order it and then said it would not matter because even if I could eat, my system is not processing it.

What?  My mind is struggling to comprehend what she is saying.  It doesn’t matter if the spasms are fixed?  I am no longer a candidate for a j-tube?  It doesn’t matter if I can eventually eat again?  What?  I don’t understand…how am I going to live?

The surgeon said she wants me to see this new doc about TPN.  What the heck is TPN?  TPN is nutrition delivered via IV.  Several months ago, I had asked my primary care doc about IV nutrition.  He said IV nutrition was not an easy thing to do – it usually needed to be started in the hospital due the monitoring of levels that needs to be done once or twice a day as the right mix of calories, protein, and fat is determined for an individual.  IV nutrition also has risks related to infection of the line.  In further researching TPN, I find there can often be problems with organ failure and…well, you get the picture.

I find myself really frustrated.  Other than one doc having me try one medication, none of them has suggested any options/treatments/ANYTHING (other than “give it more time”) since the surgery.  How am I supposed to simply give up all hope when they haven’t given me any options to try first?  I appealed to my primary care physician a couple weeks ago about helping me find additional resources – he said he would research.  I am still waiting to hear back.

As much as I want to refuse that I may have no other choice, I don’t know how much more I can do.  I am limited by finances (can’t hop the next plane to the Mayo Clinic), limited by low energy levels, limited by the constraints of single parenting (can’t leave my children fending for themselves), and currently feeling very limited by the seemingly inability of my doctors to offer treatment options.

While I know I don’t have the ability to put off receiving the IV nutrition for very long, I think that I can put it off for a month (maybe two).  Maybe I will refuse on Tuesday and put it back to the docs to keep thinking of other options.

Meanwhile, I am trying to find ways to cope with this latest blow.  I visited with a friend today and shared for the first time the current challenge.  Later, I saw the movie “Red” with another friend.  I was laughing from beginning to end.  As a friend from Europe would say, “It was a rollicking good film.”  Friendship may not cure what ails me, but it sure makes the journey less arduous.

How has cancer affected me?

There was a question on a cancer support board “How has cancer affected you?”.  I debated whether or not to respond.

I ended up writing “Cancer has changed my life in ways that I probably won’t realize for years.  Cancer shattered my career and took away all the plans I had made for the future.  Cancer opened my children’s eyes to the possibility that their mom could die.  Cancer sent many of my “friends” running away because it was too much reality for them. Cancer made it necessary for me to part company with my stomach and, as a result, my ability to eat/drink has also bid me farewell.

Cancer has not been all bad (that sounds so strange to write).  I have learned just how much my friends care about me.  I will spend the rest of my life grateful for every day I have (even when somedays are miserable physically).  I have always appreciated the little things (sunrises, sunsets) but now I appreciate them on a deeper level.  Now that my life is on hold in many ways, I realize how much life I still want to live.

I am still learning how to live life after cancer.  I don’t have all the answers, in fact, I don’t know if I have any.  Everyday I struggle and rejoice. I am struggling to find my new balance and my purpose.  I am trying to value who I am today and stop comparing to who I was “before”.

I had cancer but cancer never had me.”

Oh, how lovely were the words I wrote – and yet they smelled like crap.  Such calm acceptance…bravado…inner strength…horse sh*t.

I don’t accept that cancer has affected me – not really.  I cringe when I have to use the word “cancer” in talking about my life.  I know on one level that the only reason why I even have this blog is because some cancer cells were found in my body.  I accept that.  But it was only the smallest number of cells found in a random biopsy.  I could have continued living my life with no “cancer problems” for several more years.  (I, too, understand if they hadn’t found the cancer so early; I might not have many more years to follow.  I accept this…almost.)

Where it all seems to get fuzzy is “blaming” my current situation on cancer.  My reality is that I am in the current mess because my body is having some serious attitude about functioning without a stomach and the related nerves.  My body seems unable to adjust to the intestines being directly connected to the esophagus.  The bowels seem unwilling to keep thing “moving along” without the vagal nerve issuing commands.  My medical issues are a result of a total gastrectomy and not because of cancer.  Oh, I know that the gastrectomy only took place because of cancer  but…

My mind is racing as I write this.  It is like there is a tornado of thoughts spinning…and if I were to reach in and grab them; I might find the following:

• It is safer to have intestinal issues rather than cancer complications
• I can still return to “before”
• They found it, they removed it, it’s over
• Cancer means admitting…what?  I haven’t figured this out yet
• Blame…why does something have to be blamed?
• I didn’t have “real” cancer – it was only a few cells

There are more thoughts, thoughts that I am not willing yet to pull out of the tornado.

I want to reject all these thoughts and just move forward.  Forget about what happened and concentrate on what will be.  I am still so reluctant to accept that I let cancer have such an impact on my life. And that, my dear readers, is most likely the real problem.  Embedded in my mind is the perception that I allowed cancer to change me; that I wasn’t strong enough to stand my ground.  I am not talking about the disease but rather the impact of the disease.

It is just after midnight as I write this and I feel like I have just discovered a large square rock.  If I dig around it will I uncover a pyramid?  Alone, in the stillness of night, is not the time to be unearthing anything buried.

Anyone reading this and thinking “been there, done that” please step forward.