Sometimes you fell like a nut, sometimes you don’t.

And sometimes I feel like writing and sometimes I don’t.    The last couple of weeks have been a “don’t” period.  I am not sure why but perhaps the fact that I hate the month of April might have something to do with it.   Fact #116 on my  164 Things about Me List is that I hate the month of April.

Why, you ask?  Read this and throw in the fact that it was also a year ago April 3 that I found my Uncle dead in his chair and it pretty well sums it up.

I am also suffering from Caregiver Burnout.  I will be remedying this in the very near future – June 1st to be exact – when I will be vacationing in beautiful Lake George, NY and participating in all the fun that Americade and Bike Week have to offer.  Click here to see what Americade is all about and why I will be having the most fantabulous time ever!!!!!

Additionally I am having more help come in to help with mom and dad.  I have come to the realization that,  try as I may,  I cannot be the chief cook and bottlewasher, laundry maid, and all round General Domo around here.  My caregiver role is a 24/7 job and even when I was a workaholic I didn’t keep those hours.  It may have felt like it at the time, but I was young and naive back then.  At least I got to go home and away from work everyday, had weekends to do whatever, had a life. That is not the case anymore. 

So, more help, a week pretending to be a “biker chick” and I think that I will be ready to write again.  Oh ya, after returning home I will be heading off again at the end of June.  I will be going to Minneapolis, MN to attend the wedding reception of my now famous cousin Kate Harding.    I haven’t seen that branch of the Family Tree in many many years so I am very very excited about going.  My only regret is that Mom and Dad will not be able to go with me.  They don’t travel well these days and I am afraid that too much change and excitment would not be a good thing for them. 

The livingroom is almost complete now.  Still have the trim to paint, but I am so glad I went with the traditional colours that a house this old and “stately” deserves.  I will post pics as soon as I get the patch cable from my nephew.

Hope your week and your month of April is going/has gone well and one last thing – no matter how chilly it still is, I have spotted my one true confirmation of spring being here.  This week, I saw my first Magnolia Tree in bloom.  I love Magnolia Trees and I know for sure that spring is here when I see the first one.

Wow, I guess I had more to say than I thought I did.  LOL.  Ya, Ya – what did you expect?  Afterall it is me we are talking about and I am not usually at a loss for words.

Nancy

Ya Think!!!!!

I cannot even think of anything remotely “smart ass” about this one!!!!!  The owner of this boat has said it all with the name.

Have a great day…and watch for poles in the middle of nowhere!

 

Eating Issues after EC Surgery

This past weekend brought some eating issues that I am having to light.  During my surgery for EC, my esophagus and 2/3 of my stomach were removed.  What was left of my stomach was then stretched up and reattached to the little (2 inch) stub of my esophagus that remained for the sole purpose of having somewhere to reattach my stomach. 

Right after surgery I had a problem eating, food would get stuck, and about every 3 months I would go see Gastro guy and he would stretch out the place where the reattachment occured.  This is called the anastomosis.  It could only be stretched a little at a time – to try and stretch it too much could result in a tear, which would not be a good thing.  Little by little the anastomosis would stay open on its own, scar tissue stopped growing and I have not had to have a stretching for over 2 years now.

 

However, because I do not have a conventional esophagus and/or stomach, problems still remain when it comes to eating.  A “normal” stomach can hold approximately 1 gallon of food when it is fully extended. (Bet you didn’t know that !)   When you overeat a most uncomfortable feeling occurs whereby your stomach feels like it is going to explode and you wish you hadn’t eaten so much LOL.  I remember those days well.   My stomach holds approximately 8 ounces fully extended and because it now sits in between my lungs, not only is it very uncomfortable, it also makes breathing difficult.  I never knew how much air I ingested while I ate until my insides were rearranged.  When a person with insides in place eats and ingests air, the air goes into the stomach and moves around finding space with the food.  Because my stomach is literally a tube, the air has no place to go.  It gets trapped by food and the only way for me to get rid of it is to lay down and let the food fall to one side so that the air can make its escape back up.  This causes some embarrassing moments; but belching is the only way for me to get rid of the air that is trapped.  It also could cause a major problem by my food aspirating into my lungs  causing choking.  It wouldn’t be too bad if I could just let the air expell in it’s own time, but because of the way the new plumbing is set up, this isn’t possible; being too full causes breathing difficulty.  The air in my “stomach” trying to expand and trying to breathe by expanding my lungs and well, it gets to be really painful at times.

Additionally I have no way to tell if I am full until my food starts to “back up”.  It is always a dilemma whether to take that next bite or leave it.  And it always seems to happen when it is something really good that I am eating LOL.  In spite of myself  I am finally to a place where I can leave the last bite.  I don’t know about you, but I grew up in a home where you ate what you put on your plate.  I do have a new solution for this.  When I set the table now I put a smaller plate at my place.  It is the “salad or luncheon” plate that matches my dishes.  So far no one has noticed that my plate is smaller, except maybe Bosco and he isn’t saying anything because if he rats me out then no more food for him.  And I know, it is a bad habit to feed him at the table – but it the only way I can clean my plate sometimes, even the smaller one.

Eating in front of company has  its own set of problems.  I am lucky in that most of my friends know what I have been through and still love me and put up with my little idiosyncrises.  Most are used to seeing me, at one time or another, get up from the table and head for the washroom, gasping for air – but those who have never had the “pleasure” tend to look a little dismayed when I have to bolt.  They also look perplexed when everyone around me continues on as though nothing is happening.  When I finally return someone will ask if I am ok and the table goes back to doing whatever it was doing before I left. 

I used to live to eat, but now I eat to live. It is a far cry from the days when my plate held a little bit of everything that was on the table.  I now have to pick and  choose what I am going to eat at any given meal.  Food was my comfort zone, my friend.  All-you-can-eat buffets lost money when I was there.  Now, they smile with glee, knowing that they will at least show a little bit of profit from mytable.   I have come to the conclusion that I could be very happy living on fruit and vegetables, but I know that I need protein so I try.  But in all honesty, meat holds no allure for me anymore really, it is very easy to pass up on that steak and reach for the salad instead.  And  I rarely eat dessert anymore, by the time I am finished my main course there is no room for anything else.  However, I have been known, from time to time, to scarf down my dessert before dinner, but it has to be something that I am craving…lemon merangue pie will do that, as will anything with coconut. 

I know that complaining is not going to change anything.  And I also know that I should just be glad that I am still here to complain.  I often joke that just once before I die I would like to be able to sit down for dinner, eat a piece of steak larger than a matchbook, more than 1/4 of a baked potatoe and a healthy amount of caesar salad.  However, should that happen I know that I am not long for this world.

For anyone who has ever suffered eating issues I feel your pain.  The only real eating issue I used to have was eating too much and eating the wrong foods.  These are still issues, but for different reasons.  But as I have said in the past, everyone has their burdens to bear and this is one of mine.

A year ago today.

On April 19, 2008 my “Big Brother” Kyle died.  Kyle was not my big brother by blood – he was, instead, my big brother by choice.  And he was everything anyone could have ever asked for in a big brother.  He was always a smile when I needed on, a shoulder to cry on and a kick in the ass when one of those was warranted. He was one of the smartest people I knew, sometimes even smarter than me, which was a good thing be cause he made me see things that I never would have seen on my own.  The intelligence or rather the “smarts” he possessed didn’t come from any formal education. Rather, Kyle had what I refer to as “street smarts”.  A free spirit if ever I had met one; Kyle danced to his own drummer and the rest of the world be damned. 

I met him in Edmonton when I was 19 years old.  I thought I knew everything, like many people at 19.  I knew just about nothing and Kyle made it his mission to teach me alot.  I am who I am today partly because of him.  I had left Toronto, going to Alberta in the boon times to find myself and my place in life.  Instead, I found Kyle.  It really does prove the theory that what is meant to be will be.  We became instant friends.  Kyle had come to Edmonton from Regina and with him came his “motley crew”, Billy and Chris.  Between the three of them, Donny and my new friends we became almost a family, replacing those we had left behind in our former “lives”.  Well, as things go, stuff happens and we all drifted apart but Kyle was never far from my mind nor my heart.  We lost touch for a while, but my perserverance paid off and one day I got a call from him.  I had written a letter to his mother in Regina and through her Kyle and I were once again together.  I had moved back to Toronto, Kyle was moving around from place to place and was back in Regina to go to school.  He was always going back to school somewhere, but in true Kyle fashion that never really lasted for more than a semester – something would come up and Kyle would drop out, a couple of credits short of whatever it was he was trying to attain.  I always supported his decisions to leave school – perhaps not for the reasons he gave but rather because I knew sooner or later he would go back.

Eventually Kyle ended up in Victoria B.C. as a Life Skills Councellor.  If there was ever anyone who knew life skills it as him.  He “settled” down – this from a man who would get all nervous and shaky walking by a store with wedding dresses in the window – and I was so happy that he had finally met someone that could “tame” him. LOL.  He and Lori were together and although I never met her I felt as though I knew her from what Kyle had told me.  With Lori, they built a house in the “country” outside Victoria, and Kyle became the guardian of a man who was very mentally and physically challenged.  Kevin was a handful but Kyle had finally found something in his life that he was excellent at.  The three of them finished building the house.

Unfortunetly Kyle and Lori’s relationship fell apart and the house was gone but Kyle and Kevin stayed together buidling a new house in Sooke, B.C.  And to add to the pot, Kyle took on another young man, Donny.  Both Kevin and Donny had been labeled by society.  Kevin was prone to verbal and physical outbursts, some very violent.  Donny had his moments also – no one wanted the boys and they were left to be institutionalized.  Kyle took them both home and there they thrived.  He told me once, that when he first met Donny, he was not living, he was merely existing.  He was on so many meds that he was a zombie, sitting in a chair everyday doing nothing but staring into space.  When I met Donny and Kevin, both of them called Kyle “pops” and both of them led productive lives, each day going off to day programs and doing their chores once they got home in the afternoon.  I went to stay with Kyle, Kevin and Donny for a month.  At first I was a little hesitant, but I knew that with Kyle in charge I had nothing to fear.  And I was right.  I called them the “Three Muskateers”.  Living with them for that time was one of the happiest times in my life.  Everything was so simple, and yet so complicated.  From who got what meds when to hiding the “real” coffee and only leaving out the decaf it was truly an experience I will never forget. I instituted an “appetizer” before dinner policy and fed them food other than red meat – this was something they were not used to.  They were also not used to folding clean clothes.  Kyle would dump them on the bench outsidde the laundry room door and whoever needed what would get it from the pile.  Long after I left when I would call and talk to Kevin he would always ask when I was coming back to live with them.  “Pops” had left the laundry on the bench and they needed it folded.  Plus, “Pops” was back to red meat all the time and they needed a cook – it was nice to be wanted for whatever the reason.  I left Sooke, again with hesitation but of a different kind.  I knew I would miss Kyle more than ever. 

See, the problem with staying with someone for more than a night or two in thier home and as part of their life lets you see a whole different part of them.  At that time I had known Kyle for years but people change, situations change – Kyle never did. He was the same as he had always been.  I left B.C. not knowing if I would ever see him again.

But I did.  Kyle was not the type of person who just disappeared from your life.  He may have flown under the radar once in a while but he was never really gone.

I saw Kyle a couple of times after that – always on a vacation somewhere. We were in Montreal for Grey Cup one year, he came to Toronto for my brother Al’s wedding, things like that.  In 2002 when my life was a total mess and I really didn’t think I had anything to live for Kyle called me one day and out of the blue told me he was moving to Toronto and did I have a place for him.  Did I?????  Holy cow, I sure did.  I had no job, no money but I did still get Unemployment Insurance at the time.  We had been through worse we would be fine.  Kyle showed up with all his earthly belongings – a suitcase, 2 packer boxes and a knapsack.  That was Kyle.  Everything important to him was packed.  He was burnt out – giving Kevin and Donny up and back to being wards of the Province of B.C., something I never thought he would do.  However as someone who has also suffered from burn out I do understand why he did it.

And we did survive.  Kyle found a job working with Covenant House and street kids – a job that he loved but something was always missing for Kyle.  He hated the impersonal feeling of a “big city”.  He never really felt at home in Toronto.  His son, daughter -in-law and at the time first grandson lived near, about 70 miles away and he was his happiest when I would drop him off at Cory’s on my way to Mom and dad’s in Brighton.  But that was not enough for Kyle and after reconnecting with a woman he had known he became disillusioned with Toronto, packed his things and off he went back to B.C.  I wish I had have known at the time that I would never see him again.

While in Toronto, Kyle became ill.  We thought he had food poisoning – he was always stopping in China Town on his way home from work.  But it wasn’t food poisoning.  When I finally got him to a doctor – and that was a job in itself – he was diagnosed with Diabetes.  Not severe enough to warrant insulin shots but he did have oral insulin he was to take on a regular basis.  And, he had to stop drinking the copiuos amount of alcohol that he was used to consuming.  I never really thought about it until then, but I think back now and if I had to guess I would have to say that Kyle was an alcoholic.  Never mean or nasty, always in a good mood while he was drinking, unless he was provoked.  I had seen that on only one occassion and it was not something that I would want to see ever again.  I do know that what happened was to protect someone we both loved, and I do not condone what happened, but I do understand why it happened.  We never spoke of it but I knew in my heart that if ever presented with the same situation he would defend me and anyone he loved to the death.  Luckily that never happened.

After he returned to BC we spoke almost weekely by phone.  Always about what was going on in our lives – he had gone back to a relationship that had a ready made family with it and in the beginning he was happy with that.  But like all other things “Kyle” he became disillusioned with that.  They tried something different, moving to Red Deer Alberta, and then on to Calgary but that didn’t work out and once again he ventured out on his own.

When I was diagnosed with Cancer he was one of the first people I called.  Once I had assured him – or rather made him believe that everything was going to be ok and that I was going to be ok – he wanted to come to Ontario.  I told him to wait until I was all better – I didn’t want nor need him to be here while I underwent everything I had to, to be well again.  In retrospect that was the biggest mistake of my life.  If I had let him come, he might still be alive today…

Again we talked weekly – the converstation always started out the same – was I ok? Was I going to be ok? How was I feeling?  Even in my darkest days I never let him know how sick I really was.  I do regret that now – maybe then he would have told me how sick he was.  As always we talked about everything and he told me that he had been speaking to Cory (his son) and was thinking about moving to Ontario to live and work with Cory.  Cory has his own business and needed the help.  The last time I spoke with him he was still thinking about it.   I was so excited, Kyle was coming home.

But that never happened. 

One afternoon I was checking my email and there was a message from Facebook.  Someone was looking for me.  As soon as I saw the name I knew it was Kyle’s daughter-in-law, Sara.  Panic set in – why would Sara be looking for me?  So I called Kyle in Calgary to see what was going on.

Kyle didn’t answer the phone, a woman did and I asked to speak with him.  Hesitantly she told me that he wasn’t there.  I asked when he would be home…She didn’t say anthing so I explained who I was and why I was calling.  Then she told me…

She had found Kyle dead in his bed…he was back in Regina and in fact, the funeral was that very afternoon.  Not only had I not been there for Kyle when he died I was also missing his funeral because there was no way that I could be in Regina Saskatchewan from Brighton Ontario in less than 4 hours.  I was already in a fragile state, having found my Uncle dead and going through the whole funeral thing not but 2 weeks before.  I remember more about the first funeral and the time surrounding it, than I do about finding out about Kyle.  I do remember speaking to Cory on the phone and I do remember searching the internet for anything I could find about Kyle.  Other than that, it is a big blur.  I know I was angry, a feeling that lasted longer than I would have liked to admit, but at the same time the sadness was something that I had never felt before.  It was different than when my grandparents or other relatives died.  This was Kyle…he was my rock and the more I found out about how he died the more angry I became.  How dare he????  How dare he give up, disregard what the doctors told him.  How dare he not tell me how sick he was.  How dare he die on me???????  How dare he leave without saying goodbye????

It took me almost a month but when I was finally able I sat down and wrote his mother a letter.  I explained thatI found out too late to be there but if I had I would have stood up in front of all his family and friends and  told them about Kyle.  When I was finished, 6 pages later, I had written a eulogy that Kyle would have laughed at had he been able to read it.  I would like to think that he was looking over my shoulder as I wrote it.  His mom, Audrey, sent me a beautiful than you card and said that she reads it often and sometimes she cries and sometimes she laughs but no matter what she feels when reading it she understands why Kyle loved me so much.  And maybe thats what I need to focus on, but it is tough – I miss him so much and as I sit here and write this the tears won’t stop.  I want him back – just one more time to tell him that I am sorry that I wasn’t there for him and that I miss him and love him and will never ever forget him.

Good Bye Kyle.  Rest in Peace.

Awesome news!

Jean got the results of her last tests back and I am happy, no I am elated to say that everything came back  negative.  This was most welcome news this week.  I am not afraid to say it now, but I was very worried.   As a cancer survivor myself, I know all too well how stressful waiting can be; the “hurry up and wait” times can be full of extremely debilitating fears.  And even when the doctors tell you that everything is “good” there is always that little voice in the back of your mind that says “for now”.  I know there are alot worse diseases than cancer, but it seems to me that cancer is the sneakiest.  It will reappear when you least expect it but the good news is that over the last 10 years research has allowed for recurances to be treated in a timely fashion, often with excellent results.   So, with that good news being said, I am happy to report that Jean and her husband Dave will be jetting off for a much needed and well deserved vacation.  This Sunday they will leave for Hawaii – and yes, I am very envious.  I am just glad they are able to go without a cloud hanging over them.  Have a great time you two – and again, I am so happy about the results.

 

Nancy

For just one day…

I would like to be normal.  You know – the kind of normal that everyone else gets to be.

I want my food to stay down – if it goes down.  I want to sleep curled up with my pillow like I used to instead of sitting up so I don’t choke to death.

I want to be able to run up the stairs without feeling like someone punched me in the stomach.

I want to be able to actually wear the new clothes I bought without alterations.

I would like my left leg to do what I want it to do, not what it wants to do.

I want my right arm to work, to be able to write so I can understand what I wrote, lift anything without pain, raise it above my head in the shower so I can wash my hair with two hands not one.

I want to be not tired.  To actually get some sleep for more than an hour or so at a time.

I want …

I want to be normal again, just for one day.

Update time!!!

I last spoke with Joey on Friday night and he was hoping that Adam would be home from the hospital on Saturday.  There was also a bit of a buzz that Doris might be coming home at that time too, but Joey didn’t hold out much hope for that.  Not that Doris isn’t doing great, he just thought that it was still a little early for her to be coming home.  I haven’t called because I am afraid I will wake someone up so when Doris is feeling up to it I asked Joey to have her call me.  That way I am not interupting her at a “bad” time – like when the nurse is there or something.  I am so glad things have worked out for all of them – be well guys – you have earned it.

 

Jean will get the results of her last surgery on April 15th.  And no matter what the results she is determined to leave on vacation to Hawaii a couple of days after that. I say go for it, have an awesome time and deal with your test results when you get back. 

 

I am a little worried – Joey and Doris and their family seem to be bouncing back from their ordeal, however, Joey’s sister Mary, my BFF is on vacation in Italy right now.  I do not know where, but it is in a wine region somewhere – and I guess alot of Italy is wine region so that is of no real info where she and her husband are right now.  All I know is that Italy had major earthquakes over the weekend.  Wherever you are Mary, I hope you are all ok.  I miss you, I love you, come home soon in one piece ok? 

My friend Steve and his wife Sheila are on their way to New York City tomorrow from their home in Florida.  In a couple of weeks Steve will undergo surgery for Esophageal Cancer.  He has had his radiation and chemo and came through both with flying colours and I KNOW he will do well with the surgery.  He will be at Memorial Sloan Kettering – who has the reputation of being one of the best places for EC surgery.  Knowing others who have had their surgery there and having nothing but great things to say about MKS, I am sure that Steve is in great hands and will be on his way home in no time at all. Godspeed Steve…I will be waiting for the good news.

 

Mom and dad started their “Group” last Wednesday.  I was a little skeptical at first.  Dad is really shy until he knows people well and putting him in a rooom with a group of people he doesn’t know well – I was a little worried.  However, I really needn’t be.  When I got there to pick them up at 3:00 there was a delay because Dad, Jamie and Jack were still deeply involved in a Cribbage game.  So much for being worried LOL.  Mom and the group of ladies were cutting out really nice pictures of birds and plants and spring things, and this week they will make a Seasonal Collage to hang on the wall.  On the way home I asked them if they had a good time and would they like to go again.  Both of them gave me enthusiatic “yesses” so they will once again be going this coming Wednesday.  While they are there I will be able to get my Easter Dinner shopping done – that way I am out of the stores before the Thursday night rush.

I will be holding Easter Dinner on Saturday night and my brother Jim and his family will be here, along with some neighbours and friends.  My Aunt will be home from her wintering in the South so it will be a good weekend to catch up with everyone.  I hope we have some nicer weather that we have had – we have had rain , rain and more rain.  The backyard is a mud hole and Bosco just loves to go out and get all nice and muddy and then run into the house, right by me while I stand there holding is towel in my hand.  I swear he laughs on the way by.  Good thing the floors are laminate in the dining room and kitchen.  I refuse to wash them until Friday this week – otherwise I would spend all my time washing floors.  And I have too many other things that need to be done.

My pampered chef party was a great sucess even though I din’t have near as many attednees as I thought I would. But that’s ok.  I still had enough in sales to get a pile of things for free and at a discount so I am a happy camper. 

The new dishwasher is here and works really well.  It didn’t stop half way through the second load like the first one so the way I see it, I am already ahead of the game.  It makes life so much easier – mom has a tendancy to “wipe” the dishes instead of wwashing them, leaving me exasperated at best.  Now when I take the dishes into the kitchen, they go straight into the dw and if she can’t see them she can’t think she is washing them.  I have seen quite a difference in her lately.  Her words don’t want to come out of her mouth and we get a mumble jumble of something that is totally void of any sense at all.  It really breaks my heart to see her this way.  She is my mom – the one person I could count on and now – most of the time we are at lagerheads and she doesn’t know who I am.  It will be interesting to see my brothers reaction on the weekend.  He hasn’t seen mom or dad since Christmas and both have gotten worse since then. His kids haven’t seen Gramma and Grampa since at least last summer – I am glad that they had time when they were younger to see what their grandparents were like at one time.  I hope they understand that this disease that has robbed mom and dad of almost everything is just that, a disease. 

Thats about it for now.  I will have more later this week.  So stay tuned.  And Mary – if you are reading this in Italy please let me know that you are ok.  I love you bud.

 

Have a great week, keep smiling and remember – Life is short, eat dessert first.

 

Nancy