One step forward, two back…

I cannot believe it has been over a month since I last updated….I kept putting it off waiting until I had some good news to report.  I am going to do my best before the end of this blog post to come up with something positive to report.

I hope you aren’t expecting a chronological catch-up blog post…I am not in the mood to tax my brain enough to put it all in order.  I am going to just let it flow as it goes.

Last Wednesday (23rd?) I had outpatient surgery.  The surgeon cleaned out the tube track to remove the ongoing growth of scar tissue.  He also replaced the standard catheter with a button catheter.  He said he felt it would solve all problems with pain and scar tissue growth.  Never mind, that a few months ago, it was determined that a button tube wouldn’t work with my type of track.   Also, my tube site is different from the above links…my stoma is above and to the left of my bellybutton and has a larger entrance than shown in pics.

Well the button kept tilting into stoma sideways and did not lay flat on skin surface as the pics show.  In fact, since they had to compress the distance from the surface of the skin to the intestinal track, the button was actually being pulled down into stoma.  By Monday (April 2nd) when I returned for a surgical followup, the stoma site was very irritated and bleeding.  The deep muscle pain was also still present.  The surgeon deflated the balloon (it anchors the tube inside the intestinal track) – pulled the tube out a little, inflated the balloon and observed the button being pulled back in.  During this activity, I was about to go balistic on the exam table due to the incredible pain.  He ended up leaving the balloon deflated and suggesting I try it for another week before additional options are considered.  I think the only option is to remove it and put the old type back in and deal with the scar tissue as needed.

I have yet to find anything positive to say about this button attachment.  I can’t figure out how to cover it adequately (it oozes and bleeds and leaks) and yet have it available for use.  I can’t wear the abdominal support because it puts pressure on button.  I can’t drain bile via tube (like old tube) which means more nausea and vomiting of bile.  Button tube extension doesn’t flush clean and insurance only allows for two extensions per month which is just gross.  Without balloon there is no decent way to anchor tube and secure and I have had it slip out twice since 3pm yesterday.  I know how to put it back in but EWWWWWW I hate doing this.  Reinserting also causes a lot of bleeding and pain.  Damn button.  Speaking of the tube extension – it keeps kinking causing the pump alarm to go off and I have to keep readjusting how I am sitting/moving.  The only way to prevent the kinking is to lay flat on back (which causes bile backup) and not move.  [Anyone else got that song going through your head “she’s a really kinky girl…the kind you don’t take home to mother….”?]

I am going to be hard pressed to hold out until my next visit with surgeon – scheduled for next Monday at 3pm.

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Some of you will be amused; others will be shocked when I share with you some of the not-so-great moments in medicine.

Moment 1: (things you don’t want your surgeon to ask just before surgery) “I can’t remember, did last surgeon remove part of your stomach or all of it?   It wasn’t a confidence boosting moment.

Moment 2: (surgeon’s nurse) “You look good today, are you eating and drinking normally now that the surgery has been done?”

Moment 3: (surgeon during followup exam) “I don’t remember you mentioning that you were experiencing pain before.” Gee whiz doc…why the hell do you think I am here????  I didn’t have surgery because it was FUN and I was bored and had nothing better to do.

Moment 4: (surgeon during followup exam and after discussion regarding pain) “Maybe you could see a pain specialist to get some type of shot.”    Wow doc, that didn’t dawn on you BEFORE surgery?  Pain medication – what a novel idea (MY SARCASM-OVERLOADED BRAIN SCREAMS SILENTLY WHILE VISIONS OF SHOOTING THE DOC DANCE THROUGH MY HEAD)

Moment 5: (telephone conversation with surgical nurse morning before surgery)

Nurse:  No eating/drinking after 8pm

Me:  I use j-tube (nothing orally) – should I stop at 8pm

Nurse:  As long as you don’t eat or drink via mouth you should be fine – the doctor just wants your intestinal track empty

Me:  The feeding tube goes into small intestine with formula for nutrition

Nurse:  As long as you don’t eat/drink anything

Me:  Can you double check just to be sure

Nurse:  hold on

Nurse:  stop feeding pump at 8pm.  But you can drink water until midnight – just don’t put any in your feeding tube.

Me:  (bangs head against wall)

Last but certainly not least…

Moment 6:  (telephone conversation with pre-surgical admitting)

Woman:  Previous surgery

Me:  Total gastrectomy in Jan 2010

Woman:  Gastrectomy….[she sounded hesitant/confused]…was this for flatulence?

Me:  [after pause while I picked up my jaw from floor] Yes, my farts don’t smell at all now.

Woman:  Oh….um….okay.   [she then went on to next question]

(I know, I know – I am doomed to spend eternity in hell)

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Positive comment – I did think of one thing I liked.  I liked the goofy way I felt after I received the injection of valium just before surgery.   I felt more “liquified” rather than simply “relaxed”.  I liked that feeling…I liked it a lot.

 

Medical Updates

So…last Wednesday I saw my primary care doc.  He looked at stoma site (tube insertion point into abdomen) and excused himself to go call plastic surgeon while I waited.  Came back in and said that plastic surgeon wants to see me next day.  He also commented that the plastic surgeon told him that he had practically tortured me with last treatment.  Glad to know it wasn’t my imagination.

Thursday – early morning iron infusion then B12 shot and then off to see the plastic surgeon – I really dislike days where all my freedom time is spent with medical appointments.

When the plastic surgeon came into exam room, I asked if I could ask a couple of questions before he “got started”.  He quipped back “That was one.”  “Fine” I replied “I would like to ask 3 questions.”  I am sure he was trying to build rapport with me but it seemed a little snarky to me.  I point blank asked him about the issue of the loose skin around the stoma site as one of the contributing factors to continuing irritation.  I asked if the risk of infection was too high to consider the long-term reduction of continued irritation if surgery is performed.  He said the risk was not too high and that he could reduce some of the skin/irritation.

I then told him that, while I appreciate his desire to address the tissue granulation with an aggressive treatment plan, I would appreciate it if he would not forget that I am attached to the stoma site.   I couldn’t help the quaver in my voice and the tears that from no where.  He asked if it had helped at all and I honestly told him that the pain had increased rather than decreasing.  I told him that the pain was severely limiting my already limited activities and that I would rather go with a less aggressive but more frequent treatment with primary care doc if this was the continued recommended treatment.  My comments seemed to startle the doc (and the interns in the room) and he assured me that he was aware that I was connected to the stoma but that he would keep this in mind.  He even said that he would not be doing silver nitrate at this visit due to the high level of pain that was still present.

He then looked at the stoma site and made the comment that it appears that the aggressive treatment was just pissing off my tissue rather than improving matters.  He then said he was going to see if a particular colleague was available to come take a look at the stoma and offer some suggestions.  He told one of the interns to stay with me.  Had a nice chat with the young man.  Joked with him that he would have to lose a lot of his personality to become a surgeon.  He agreed that the average surgeon does seem a bit “reserved”.   He also said that the doc being consulted was unlike any other surgeon and I would be rethinking the “surgeon personality” after meeting him.

About 10 minutes later he returned with another doc.  I would say that it was a breath of fresh air walking into the room.  New doc came over and expressed empathy and concern (before even looking at stoma).  He asked me how I was holding up (damn, couldn’t stop more tears from leaking out.  Why does anyone asking me how I am holding up, it makes me cry?).  He put his hand on my shoulder and assured me that he would help.  Plastic surgeon told him that he had promised not to do silver nitrate at this exam.  New doc maintained eye contact with me and assured me as well that he would not do silver nitrate either.  He then examined the stoma.

New doc asked who put in tube and wanted to know if it was original tube.  I explained that tube had been replaced a few months ago and the ER doc put in a larger size.  New doc wanted to know if original surgeon was involved in treatment and when I said that original surgeon states that he only puts the tubes in, he doesn’t maintain them; plastic surgeon made a slightly snarky comment and was given a reprimanding eye glare from new doc.  I got the distinct impression that there is an ongoing animosity between plastic surgeon and original surgeon.

New doc said tube was still too small for size of tube channel and that this looseness was irritating channel and allowing bile to enter channel (the ooze that I had been told was normal by original surgeon).  The fluids were further irritating channel tissue.  New doc then suggests a new tube that will fit better and he can do it while I am there.  Wow!

If you have never had a j-tube removed, it is one of the weirdest sensations ever.  It is like that stomach flop that happens on an elevator times 100.  New doc did say that the pain would be about the same for inserting as it would for injecting the pain medication.  Remembering the previous painful injections, I told him I was willing to tolerate the insertion pain.   Whoa…because of irritated tissue, inserting the snugger tube was more than just a little painful.  Not sure if I made the right choice.  New doc said that he would be taking over my care and that he wanted to see me in one week.  He told nurse to let scheduling know to find room in his schedule to see me.

My new j-tube is RED.  It has taken a little getting used to the color….first time I went to hook up I had a little “gleep” moment thinking I was bleeding.  I have noticed a slight reduction in the amount of fluid at stoma.  It is still very present and still looks like infected pus (I know gross…trust me even more gross in person) but quantity of fluid reduced.  There has also been a slight reduction in the overall stoma site pain.  The pain is almost always present (except when I am reclined and not moving a muscle…not even to blink) but it has dropped from a base of 8 to a base of 7 with some moments dropping to 6.  Today it is back up to an 8 (I think due to my activity while running a couple of  errands this morning – that and the fact that I kept dropping keys and such  and had to get in/out of car several times).   I am taking it really easy rest of the day hoping it will drop back down tomorrow.

I am very pleased with the new doc’s manner.  Just the perfect blend of compassion and professionalism.  Since he is one of the senior docs, he also has a lot of experience.  I am not dreading Thursday’s appointment quite as much now that he will be in charge.  Amazing how a little warmth and compassion makes the medicine go down easier.   While I am still convinced that there is a “surgeon personality”, I am willing to concede that there are some surgeons who have escaped the damaging effects.

[oh,  for those wondering….yes, I did check and, unfortunately, new doc (who is in ideal age range) was sporting a wedding ring.  I think I would much rather keep him as treating doc…be still my throbbing stoma (hahahaha)

Random babbling…

I read on another website about people thinking cancer is contagious and how some people have noticed the distancing of friends/co-workers.  I thought about some of the people I have lost since cancer.  I think many people pull away because they feel helpless or they are afraid/worried that they will be asked to provide more emotional support then they are willing to give.

I lost several friends due to my cancer.

Friend 1.  She works at a hospital and said my cancer was liking bringing her work home with her.  It was too “medical” and when she was off work she didn’t want anything to do with medical issues.

Friend 2.  Her closest friend died of cancer a few years back and my cancer reminded her of that loss and she didn’t want to get hurt again so she decided it was better to sever the friendship.

Friend 3.  Our friendship consisted of lunches, dinners, movies….now that I can’t do those she struggles to adjust to new options.  She works during the day in the city and so it leaves evenings and weekends only.  She is usually busy with family on weekends so that left evenings.  Due to pumps, evenings are out for me.  Too much of a bother and too inconvenient for her.

I do understand what their reasons are and although it hurts to feel “dumped” due to cancer, I try to focus on the good memories rather than the reason the friendship ended.  I know that most people would view them as petty “not-really-friends” but that wouldn’t be a fair statement.  We all have our limits and know what nurtures us with our friendships.  Cancer treatment and the aftermath has limited my ability to nurture their needs and to meet them on equal grounds.

I respect their ability to come to terms with THEIR emotional limits and were honest with me.

I haven’t filled the friend voids – it is very difficult to get out and meet new people.  I also hate to explain why I can’t meet them for dinner/lunch or an evening movie.  I feel like it puts me in a position to have to apologize.  I don’t like this feeling and so I do find myself pulling back and avoiding even my existing friends.  I hate hooking up around people…I don’t mind their curiousity questions but I do mind having to explain some issues.  I hate the pity or the “hope you feel better” comments.  This is my “feel better”.  There is no “feel better” cure/fix around the corner.  This is my reality and I am struggling to find acceptance – I don’t need others to continue to try to keep me focused on returning to my old life.

It is a tough balance between taking care of myself by pulling away from some people and staying connected to people who care about me.  I know everyone means well but it is sometimes not helpful to me.  I know where I need to be mentally and it is definitely a journey.

Does anyone else experience similar?  How do/did you move forward?  How do you stop the “hope you get better” comments and move others into “acceptance” of your situation?

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With all the hoopla in the news lately about Susan Komen and Planned Parenthood I can’t help but wanna shout

THERE ARE OTHER CANCERS TO FUND BESIDES BREAST CANCER!!!!

For every dollar donated to breast cancer research, people ought to donate an equal amount to other cancer research.  Everyone with cancer deserves a cure, support and encouragement.  I don’t want to appear to be dismissing breast cancer support but it can often seem that all other cancers are not as worthy of curing.  I’ve actually been turned down for financial assistance because I had stomach cancer not breast cancer…if you lose your hair to chemo from a non-breast cancer, you don’t get the wig/make-up etc assistance that you can get if your boobs are involved.

All the emphasis on breast cancer and pink ribbons seems to overshadow the harsh realities:

Cancer is a leading cause of death worldwide and accounted for 7.6 million deaths (around 13% of all deaths) in 2008. The main types of cancer are:

• lung (1.37 million deaths)
• stomach (736 000 deaths)
• liver (695 000 deaths)
• colorectal (608 000 deaths)
• breast (458 000 deaths)
• cervical cancer (275 000 deaths) (3).

About 70% of all cancer deaths occurred in low- and middle-income countries. Deaths from cancer worldwide are projected to continue to rise to over 13.1 million in 2030.

Yeah, I am probably being petty but look around – breast cancer is only one form of cancer.  Your mother, sister, aunt, daughter, etc. can get stomach/brain/lung/skin/etc cancer without being in any risk category…so can your father, brother, son and uncle.   Yeah, I have my panties in a wad because of all the breast cancer ads I have heard today. They all seem to imply that breast cancer is the most devastating diagnosis you can receive. Do people not realize how few women with breast cancer actually die from breast cancer compared to other cancers? Do they know that all women (and men) need a cure for cancer – not only breast cancer victims. I am ready to say “chop off the boob and move on”. I know that is not right and it is just my frustration showing.

 I am tired of the lack of support that breast cancer agencies and fundraisers demonstrate toward other cancer warriors and survivors.

There also needs to be more support for cancer survivors.  A friend has been talking about forming a charity to help survivors.   I like the idea of a charity but curious as to the depth of the mission.  Since there is no “research” except regarding the long-term effects of surviving cancer I think that asking for support might not be as appealing to many people. I think that education regarding the impact of cancer needs to be increased as I hear so many people comment “well, you survived cancer, so why aren’t you working?” or “well, now that your cancer is cured….” or “your issue is not cancer…” or the worst “I know so many people who have had cancer and are just fine now” (implying that I somehow messed up surviving cancer).

People assume that SSDI is sufficient (hahahahahahahahaha). It is also not a matter of “getting back to living and moving forward from the cancer”.

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On the medical front…I do have an update but my eyelids are drooping.  It’s tiring to keep getting up and down from my soapbox.

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Question – why do I continue to cook and make such incredible food when I can’t eat it?  Don’t say I do it for the boys as they will eat mediocre food when hungry.  Today was a pesto quiche, homemade cookies and later Korean BBQ chicken with homemade crab rangoons.

2 bonus points to all who have read this post from beginning to end….

Frustrated by pain…

Today was another day spent moving as carefully as possible to avoid using any abdominal muscles (impossible).  My stoma site is as painful as it has ever been — it is as painful as the incision site was after each of the three major abdominal surgeries.

I finally conceded to the pain at the end of last week and asked my doc for some vicodin.  I hate taking vicodin but it takes the really sharp edges off the pain.  Even if I don’t move, there is a dull ache.  Today it is even more sensitive because I was a vendor at a craft show yesterday which meant sitting for several hours and a little lifting.  I did a load of laundry this morning and sure enough, the site was bleeding by afternoon.

I struggle with the challenges imposed by my limited hours off pump – now to have this level of pain has limited my activities even more.  Very discouraging.  I am trying to stay upbeat but, damn, pain can be a real downer.

I see my primary care doc on Wednesday…he will probably do another silver nitrate treatment (agony) but that doesn’t seem to be helping that much.  The tissue that the plastic surgeon removed has returned (and then some) so even his aggressive treatment isn’t providing any relief.

Later this week is the iron infusion (ahhhh the anticipated taste of sucking on rusted nails has me so looking forward to the infusion….NOT).  Pat (infusion nurse) is great for conversation but it would be nice if I actually felt some improvement from the infusions.  It raises my iron levels a little but the levels never quite hit even the low end of normal.

* * * * * * * * * *

On a positive note, I am making a lot of purses/bags with all this down time.  I need to add them to the online store so I can actually sell some (gee, isn’t that the whole point of making them?).

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I turn 50 on the 22nd of February.  It is bothering me a little.  I was initially very frustrated at how to celebrate this milestone birthday.  Anything to do with food/drink out of picture, limited off pump hours, very limited resources, and apartment too small for entertaining.  But then….

…a friend offered to host a party during afternoon free hours on a Saturday

…another friend came up with a great idea.  Friends are to send/bring a skein of yarn that is most like them.  I will crochet a friendship afghan with the different yarns.  I figure the afghan will be the coolest thing ever (and warm for snuggling up with on cold winter days) or it will be absolutely hideous (hahahaha).  I am hoping for cool!  I have already received a couple of skeins with lovely cards from the individuals explaining how the yarn is like them.  Very exciting I must tell you.

* * * * * * * * * *

Tomorrow (14th) is my oldest son’s 17th birthday.  He asked if we could make sushi rolls for his b-day dinner.  I taught him how to roll sushi years ago and it is something we really enjoy doing together (we each own a bamboo sushi roller/mat).  Sushi is his favorite food but a little too pricey for my budget.  Since I am not trained on inspecting raw fish for parasites, we use smoked salmon and some lightly seared tuna for safety.   We will make a variety of rolls and he and younger son will eat every last bite.  My son is a sushi snob of sorts as he only uses special sushi rice done to specific methods in the rice cooker and will insist on picking out the avocados and other ingredients himself.

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Well, I think that is all the news that is worth blogging about….oh I know some of it isn’t really “blog worthy”.  Let me get over this pain hump or at least start taking stronger doses of the vicodin and the blogs will get more interesting or at least demonstrate some twisted or dopey humor.  I know there is always something that happens to me to laugh about.

Why just the other day I was doing a little shopping when I ended up near this woman and her 20-something daughter on the bread aisle.  The woman was harping on and on about people she knew – malicious type gossip if you know what I mean.  I found the boys’ bread and had to wait patiently as this woman kept the conversation with her daughter going – ignoring the fact I was trying to move further down the aisle.  I said “excuse me” twice and she actually held up her one finger (that universal “wait a second” gesture).  I couldn’t take it any longer and I turned my cart around and as I went down the aisle the other direction I was muttering under my breath (basically doing a rather rude impression of her).  A woman I passed gave me a most snarky look just before she said “oh mother dear….”   I should have been embarrassed but I was still fuming about her holding up her “wait” finger to me while she viciously attacked her “friends”.    Imagine my discomfort when the next day I was picking up a prescription and the woman at the register is the “snarky look” daughter.   Ooops!   She obviously recognized me….but didn’t say a word (neither did I…giggle).  I laughed probably a little too soon while walking away from her register.  Nope, still not embarrassed.

Even with my limited social interactions, I can still manage to misbehave…I may be celebrating my 50th birthday soon, but I can be very immature at times.  At this point in my life, I think that “maturity” is over-rated and I would much rather laugh then behave.

Say Goodnight Gracie

too funny not to share

Don’t be afraid to laugh with us when we laugh at ourselves…  (my comment is almost worthy of a blog post)

http://mycrazycolon.wordpress.com/2011/12/15/1448/#comment-161

 

My comment:   So true!!! My frequent nausea and dry heaves will sometimes occur without warning and in the most inconvenient places (like there is any place that it is convenient to dry heave). I was standing in the line at a store when I started dry heaving. People turned to watch and after the wave passed, I simply said “Hairball.” and shrugged. Most people gave me that weak oh-you-poor-thing-you look but a couple people will burst into laughter. I love the ones who will quip something like “Put a bit of butter on the tip of your nose and lick it off….works for my cat.”

For my blog readers…

Christmas is just around the

corner….use discount code

HOLIDAY to receive 20% off all

orders thru December 25th!!!

ENVIABLE CREATIONS 

Random Act of Kindness Update:  While running to the post office in the pouring rain I saw a guy walking with a soaking wet paper bag over his head.  I pulled over and asked if he wanted to trade the paper bag for an umbrella.  We traded (ugh on what to do with a soaking wet paper bag in the car….lol).  [Yes, I could have given him a ride but that would have lasted one time and the umbrella will last him much longer…besides, I confess that I am not comfortable giving strangers rides in my car unless they are really ancient and I know I could take them on *giggle*]

Did anyone else give/receive a Random Act of Kindness?

Remember:   “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. ~Dr. Katherine M. Howard

Three iron infusions down – two more to go.

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Additional thoughts/comments:

I have received some feedback praising me for my Random Act of Kindness.  My first response is “awww….wasn’t nuttin” but reality is that I made a conscious decision to do some small good deed that day. Would I have stopped on any other day…I don’t know….I would like to think I would have but I honestly don’t know.

It also wasn’t “nuttin” to the gentleman walking in the rain. I know when I receive the kindness of a stranger, it makes me feel really good inside and it makes me realize that the world is not a horrible bad place. I am sure my gesture touched him in a positive way.

I hope people understand that it is not about doing it for the praise…that is not why I am sharing this with others.  I am hoping to inspire someone else to do their own good deed.  Years ago I watched the movie “Pay it Forward” and it really stayed with me.  I hope that my good deed will “pay it forward” in motivating others into action which will further motivate more and more.  Imagine what it would be like if everyone got into the habit of helping/encouraging/supporting others…  This possibility makes me smile.

Mahatma Gandhi said it best “Be the change you want to see in the world.”

 

Licking the rusted bucket

Met with the Hematologist today to review my blood levels (my blood is tested weekly).  My hemoglobin has dropped to 8.something which means that I will need to have a series of five twice-weekly iron infusions again.  The doc thinks that after this next round of twice-weekly infusions that I should be able to keep my iron levels up with a regular monthly infusion….all part of the chronic anemia that goes hand-in-hand with the gastrectomy and Vit D deficiency.  Not looking forward to the unpleasant taste of rusted iron that occurs during the iron infusions.   I am hoping that some intense peppermint gum will help mask the rusted metal mouth.

I should have a little more tolerance to the cold once the blood levels are closer to normal.  I might have a little more energy but probably nothing to blog about.  Weight has stabilized now that I am doing the afternoon tubing.  Blood sugar is fairly stable as well.  Had a few weird dips but nothing like before.

On another positive note, it does not appear that my bone marrow is having problems producing red blood and it does not appear that I am bleeding internally.  Very relieved to get this information.  I think once a person has experienced cancer, it is way too easy to start fearing a return.  I am not sure if one ever “relaxes” completely when waiting for test results or discussions of  abnormal findings.  I know it is hard for me not to worry even if I am not fully aware that I am worrying.

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Found it impossible the other day not to try to eat one of my favorite holiday cookies – a small two-bite almond wedding cookie (you know the kind that are coated in powdered sugar).  I will be honest – it didn’t taste as delicious as I remembered and the dry crumbly cookie was hard to swallow dry.  About a minute later my system started to reject the cookie.  It is very hard to expell a chewed up cookie.  The cookie crumbles got caught in throat and the retching seemed more appropriate for an 8-course dinner extravaganza rather than a small cookie.  It was so violent that my son came out from his room to check on me.   My abdominal muscles are still tender.  No cookie is worth that.  Similar thing happened when I just had to swallow that small sip of ice cold 7up.  Even though the reactions are so unpleasant, it is difficult to give up food completely.  Sometimes the mental desire to eat/drink proves to be stronger then the memory of the last moment of weakness and the subsequent expulsions that could rival the little girl in The Exorcist.  But as time marches on, the moments of weakness are not frequent and consist of a small nibble or two.  Don’t remember last time I actually ate a full bite of anything.  It helps that taste buds are kept dull by the daily bile vomiting.

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 On a “time to shake the head” update….my anti-nausea medication has been approved for 10 pills every 4 days.  Considering I take 4 – 6 pills a day; this is woefully insufficient.  The fact that I have to call the pharmacy every four days to get 10 pills is asinine.  The fact that the pharmacy has to contact my doctor’s office and the doctor’s office has contact Medicaid EVERY FOUR DAYS is ludicrous.

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BTW…I am staying mindful of  the happiness prescription.  Nothing earth-shattering or blog-worthy to report yet.  I did laugh a lot as I convinced my son to model a newly created scarf.  He would make a lousy drag queen.

 

Treatment Plan: 2 doses of happiness each day

(What a corny title to this post…but appropriate.)

When I was growing up there were specific rules that had to be obeyed.  One of those rules had to do with staying home when sick.  If you were too sick to go to school then you were too sick to watch tv, go outside, play with toys, etc.  You were expected to stay in bed the entire day (and evening).  Guilt was heavily piled on just to reinforce the second rule – you must be practically dead before you are “sick enough” to stay home from school.

I followed the rules even into adulthood.  I seldom called in sick even when I was sick because I never felt I was “sick enough”.  And on those rare occassions when I did call in sick, I was worried that going to the grocery store was akin to breaking the rule of not leaving the sickbed or demonstrating that I wasn’t really THAT sick.

Guilt…fear….fear….guilt…

Fast forward to the present.  Last week I went out with a new friend to do a little window shopping and to check out a specialty yarn store ($$$$ yikes!).   We giggled and had a good time.  Afterwards, I was driving home and I felt terrible.  It took me some processing before I realized that I was feeling guilty for having a nice few hours with a friend.  I also haven’t told her about my medical issues and why I declined her invitation to go eat lunch with her at the cute little diner.  I think part of the reason I am enjoying our friendship (besides the fact she is a great individual) is because my medical issues are never discussed and she does not see me as “sick”.  I know that at some point I will need to explain a little regarding the inability to eat/drink….but I am in no hurry.

After more self-reflection, I realized that I have been ignoring this nasty little beast called Sick Day Guilt for quite some time.  It is like my brain is conditioned to believe that if I can’t work then I should be unhappy.  How dare I enjoy myself when I am on disability and unable to be a self-supporting member of society.  Nevermind that I am on feeding pump and iv for approximately 16 hours a day and nausea/bile vomit are my constant companions….deep down inside, I don’t feel like I am entitled to laughter or enjoyment.

I know there are definite physical reprecussions if I push myself with too much activity.  I know I don’t have 1/2 the energy or endurance that I used to have.  But, regardless of how many times a day I smile or cry, sit on the couch or window shop with a friend, I will still spend 16 hours on the pumps.  My body may be challenged to function properly but does that mean I should impose similar restrictions with regard to enjoying life?   Laughing  and spending time with a friend hasn’t stopped the bile, nausea and it doesn’t reduce the need for the feeding tubes….it won’t grow back a stomach or improve my blood iron levels.

My homecare nurse, Mary, has instructed me to enjoy myself/life at least twice a day even if it is simply a smile with one of my sons.  Giving myself permission to experience some enjoyment in life is my next goal.  I need to stop equating happiness with playing hooky.  No one is going to see me laughing and point their finger at me and scream “Fraud…you are supposed to be sick….stop laughing and be more miserable.  Go home and sit in your room until you are well.”

I may never be “well” as defined by my life before stomach cancer but I do believe that I can be “well enough”.  I should be able to stop defining my life because of my restrictions and start living my life mindful of my restrictions.  16 hours on the pumps means that I can spend around 3 hours each morning and around 3 hours each afternoon completely free of the pumps and there is no need to sit at home during these freedom hours afraid of being happy.

Today at the craft show, I also realized that I don’t have to explain to strangers why I have so much time to crochet.  I don’t have to apologize to them for the waves of nausea or the sound of giggles.

Tomorrow I might even crochet something that I have no intention of selling and I won’t allow myself to feel guilty for wasting my time/energy.  How scandalous!

Enjoy life with respect for your circumstances (what ever they may be) but don’t limit your ability to enjoy life because of those circumstances.

Finally, I end with these quotes…

Life is not about waiting for the storms to pass…
It’s about learning how to dance in the rain.
– Vivian Greene

We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.
The old skin has to be shed before the new one can come.
– Joseph Campbell

Life may not be the party we hoped for, but while we are here we might as well dance.
– Anonymous

Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do.
So throw off the bowlines. Sail away from the safe harbor.
Catch the trade winds in your sails. Explore. Dream. Discover.
– Mark Twain

When I let go of what I am, I become what I might be.
– Lao Tzu

Do you want that flavored?

I was at the pharmacy yesterday getting antibiotics (have a possible infection around tube site).  After explaining that the liquid is needed to go into j-tube, the pharmacy tech asked me if I would like to pay $3 to get the medication flavored in either cherry, strawberry or bubblegum flavor.  I looked at her….was she serious?  I said very slowly “this will be going into my j-tube”.  She smiled and said equally slowly (she must now think I am “slow”), “We can flavor this medication with cherry, strawberry or bubblegum flavoring for only $3 – would you like one of those?”

I said “original flavor” and she said “okay, but it might taste bad”.   I was running a fever of 101.8 and didn’t have the energy or patience so I kept my mouth shut (yeah, like that happens very often).

Have you ever read some of the side effects to your medications?  This particular drug can possibly cause the following side effects:  “severe stomach pain or cramps, severe diarrhea, or bloody stools, secondary infections, severe and sometimes fatal liver problems, tooth discoloration (don’t have to worry about that one), hearing loss which may be reversible, vomiting, abnormal taste, nausea,  indigestion, stomach discomfort, headache, confusion; decreased urination; depression; dizziness; emotional or mood changes; fast or irregular heartbeat; hallucinations; loss of taste or sense of smell; muscle weakness; nightmares; red, swollen, blistered, or peeling skin; seizures; symptoms of liver problems (eg, yellowing of the skin or eyes; dark urine; pale stools; severe or persistent nausea, loss of appetite, or stomach pain; unusual tiredness); tremor; or trouble sleeping.  This is not a complete list of all side effects that may occur.

Hmmm….makes you wonder if the possible side effects are worth the potential gain.

I see regular doc on Wednesday to determine if there is infection and to use silver nitrate on stoma site to reduce inflammation (this is really gross to discuss so please let’s just move on to talking about food…

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I decided I am not going to make a turkey this year – kids were not interested in me trying out a new stuffing option and I wasn’t interested in spending a whole day cooking when I can’t eat any of it.  Here is the stuffing recipe they turned down.

Twinkies Turkey Stuffing  
Ingredients
1 (8 1/2 ounce) package yellow corn muffin mix, prepared and baked according to package instructions
6 Twinkies halves lengthwise
1 (14-18-pound) turkey
1 tart apple, peeled, cored and diced
1/4 cup honey

http://www.huffingtonpost.com/2011/11/07/recipe-turkey-stuffed-twinkies_n_1080045.html

I will put ribs into the crock pot and make them a nice pumpkin dessert.  (oh don’t fret, they will get turkey at the exlaws Thanksgiving lunch earlier in the day).

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Still adjusting to the mid-day feeding tube hookup.  1-1/2 hour around noon just irritates me because I feel more trapped at home…but it has definitely helped with the afternoon low blood sugar problems.

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Still fighting with Medicaid for medication approvals.  They are now refusing to fill my anti-nausea medication.  Will have to ask doc to write letter to them explaining medical need.  They finally gave approval for 8 of the sleep aids per month.  Gee, what 8 days out of 30 shall I choose to sleep?  I am trying a different medication that is a lower dose to see if it will work.  They won’t approve it but I can swing the out-of-pocket expense this month.  It is much less expensive than the other medication.  I am too tired of not being able to sleep – I will try anything at this point.

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Keeping busy crocheting…now is a great time to buy some Christmas gifts (hint, hint).  I am also offering gift certificates so you can let them pick out their own scarf (hint, hint).  www.enviablecreations.com

Made several scarves to be donated to the homeless.  A local church donated the yarn so I am donating my time.

Oh, because it is Thanksgiving, I just wanted to post a gratitude message:

I am thankful for the spider that came down on on web from ceiling almost landing on couch between me and my son. You proved that I can still scream very loudly like a little girl and move REALLY FAST while shuddering with horror.

What she said….

This journey of mine has been a lonely one for the most part.  So hard to share some of the grittier aspects of life.  Tonight, I cried.  Real tears, loud sobs.  Not because of loneliness.  Not because of sadness.

Tonight I cried because I met someone whose journey has followed a similar path.  Her poem (http://mycrazycolon.wordpress.com/2011/10/13/pink-bubble-gum-colored-lips/) hit me hard.  I could have written this poem.

She understands…really understands.  If we never meet, if I never read another blog of hers…she has touched my life.

There are lessons to be learned.  Don’t be afraid to share your experiences.  You never know who may need to hear what you have to say.  Take time to listen to others…you never know what you may hear.

Heading back to her blog to laugh now instead of crying.