Serendopeity

The faculty of making stupid discoveries by accident. The name of my first Fantasy Football Team. Neither of which have anything to do with this blog. I just like the word. Deal with it !!!!!!

Tag Archives: sickness

Six years and counting – Part 2

Not all cancer centres in Ontario have radiation capabilities. I was accepted as a patient at the Kinston Regional Cancer Centre in Kingston, Ontario. Although I could have my last two rounds of chemo closer to home, Kingston was as close as I could get for my radiation. So, how close is close? A drive to Kingston from where I live is approximately 80 miles or about 130 kms. Because it is over 40 kms I was eligible to stay at the Quinte 1000 Islands Cancer Lodge in Kingston as I would have at least one radiation treatment a day.

If you have ever donated to the Canadian Cancer Society, by any means, I can tell you where some of the money goes. A lot of people think that the donations are used for Cancer Research only, but they aren’t. Each city with a Cancer Centre has a lodge. It’s kinda like Ronald McDonald House in that patients who are far from home can stay, at no charge (for the most part) for the duration of their treatment. Additionally, if there is no room available at the lodge, patients are housed at local hotels – all on the Cancer Society’s dime. Staying at the lodge does have its drawbacks – but at the end of the day, as a patient, the only other place that would have been better for me was home. The great thing about the lodge is that everyone there is in the same boat – we all had cancer and we were all undergoing treatment in one form or another. Not everyone was having chemotherapy and concurrent radiation. Some were either/or. But it didn’t matter. A group of people with similar circumstances were brought together under the same roof. We laughed together, we often cried together but the operative word here is together. No longer alone, I made some friends that to this day remain such.

I began my chemo/rad protocol on a Monday morning. Rule one of Cancer treatment is be prepared to sit around and wait. I get really angry at those who complain about this – get over yourself – look around. There are probably people in this room with you who will not see next month let alone next year. My first week was chemo and rad. I had done my research, talked to all my doctors and knew what to expect, at least I thought I did. I was wrong. Somewhere in all of the reading, listening and learning I missed the part that said chemo could have an effect on my emotional well-being as well as my physical. This became painfully evident the first week. My fanny pac of 5FU began acting up on the first day, the alarm going off kept me awake all night. The next day when I went to the clinic for day 2 I begged them to stop the 5FU fanny pac. However the nurses, pros that they were figured out the problem and the fanny pac stayed. Score 1 for the nurses. My rad techs, Wendy and Sonja were awesome. It took 15 minutes to set me up for 30 seconds of beam. Once done the day was mine.

On Thursday of that first week, I was ready to go home. I couldn’t eat, couldn’t sleep and although the 5FU was in a bag and being pumped into my arm I could smell it which made me nauseous all the time. I went to my morning rad appointment. Ever so cheerful Wendy called my name and when I met up with her she asked me what was wrong. “Nothing”. “Come on kid, what’s wrong?” at which I totally lost it and told her I was done, not coming back, let the chips fall where they may, blah, blah, blah. Wendy took me into the rad room and set me up. When we were done she took me by that arm and down the hall to yet another room in the clinic. We were met by my Rad Onc’s primary nurse Sylvie. It took over an hour, but in that time the three of us laughed, cried and came to an understanding. The chemo was the culprit – and was not only attacking my physical body but also my psychological one. Ahh, so that was it!!!! Without that talk I would not have continued my chemo/rad. I would have left Kingston the next day and never went back. I returned on Monday for week 2. The following 3 weeks were rad weeks only and in week 5 I was again hooked up for chemo. It took over an hour to find a vein and even then it was a chore. I stood with my arms in water and when not in the warm water I was wrapped in hot towels, trying to coax a vein out that could be plundered.

Finally hooked up, the poisonous drip began again. On Wednesday while the cisplatin was dripping my arm started swelling – kind of like the Elephant Man. The vein was blown! I was rushed to the ER, where I had a PICC line inserted and then back to the clinic to continue. Why they didn’t insert a PICC line in week 1 is beyond me! It was so much easier for all injectables with the PICC line. I firmly believe that PICC’s and Ports should be standard for any chemo that requires a vein.

The remaining rad treatments and chemo rounds produced the “usual” side effects. After 5 ½ weeks of radiation and 2 rounds of chemo I was able to return home and complete the last 2 rounds of chemo at a clinic closer to home. 5 ½ weeks had taken its toll and that weekend I was so sick I really think I wanted to die. Thank god for home care nurses. I had been sent home with anti-nausea drugs, all types – and each time a nurse came, I got a shot and when a nurse wasn’t due dad would bundle me up and take me to the ER and they would shoot me up, check my hydration levels and feed me popsicles.

I was taking a beating with round 2 – days were spent on the couch or in the bathroom. It would take me much too much time to get the energy to get to the bathroom and then more time to garner the energy to get back to the couch. It was not a happy time in my life.

I met with a new Oncologist at the Belleville General Hospital who would administer rounds 3 and 4. I told him that I had been so sick that if he couldn’t guarantee that the next two rounds were going to make a difference and endure that I would never get cancer again, I wasn’t going to submit. Now, I knew he couldn’t guarantee that – he knew he couldn’t but in my chemo induced ridiculousness it was a way of saying I was done, game over. He asked me to please try it one more time, his way, which was much different than it had been in Kingston. In addition to the obvious he was also really big on hydration. It would mean longer hours in the chemo clinic and a couple of extra days with the 5FU fanny pac after each round, but he was as sure as he could be that the last two rounds would be easier than the first 2. For whatever reason, I agreed to try it!

And he was right. The additional hydration made a world of difference. Instead of 50mls of saline with the cisplatin drip I received 50mls before, 50 mls with and then 50mls after the drip. At the end of the week, I was sent home with a fanny pac still in place but instead of the dreaded 5FU it was loaded with 1000 mls of saline. When that bag was gone, my home nurse hooked me up to another 1000 mls, and then another. When that was gone, the fanny pac was removed. If you have ever undergone any type of chemo, you know that the faster the stuff is flushed out of your body, the faster the side effects are lessened. Additionally, for someone who’s ability to eat and keep down any food, hydration is a major concern. Once your body is dehydrated it starts to slow down and all organs can be affected to the point of shutting down. It is so important to ensure that ones kidneys are working and dehydration can lead to kidney failure in a very short period of time. And that is never a good thing!

Round 3 of chemo was very uneventful and the side effects I had suffered with the first 2 rounds were still there, but not nearly as bad. In fact, round 3 was so easy I announced to my Onc that I was ready to get round 4 done, in the can and be done with it all. Chemo does some nasty things to a body so I had to wait the 3 weeks till I could undergo the final round.

Round 4 came and the week went by fairly uneventful. When I was leaving the clinic on the Friday afternoon I told the nurses that I was glad that I would not have to see them everyday but not to take it personally. I would still see them weekly for a while but not daily while they were dripping that stuff into my body. We all laughed and after the hugs were over – I went home.

I WAS DONE. 28 radiation treatments, 4 rounds of chemo. It was over! The drive home was bittersweet; I had spent the past 4 months in the company of doctors and nurses daily. They had become a major part of my life. I would miss that, but at the same time, it was time to move on and heal once and for all.

Well as luck would have it, that wasn’t to be in the cards. Upon walking into the house I spied the light on the phone flashing…

It was one of the nurses at the clinic. I was to sit down and try not to move much – there was a home care nurse on her way over. She would explain further when she got there but until she did, sit down and relax. Ok I could sit down – but relax – ya sure – what the hell was wrong now?

My nurse showed up within minutes of me getting the message armed with a bottle of something and a needle. Apparently my magnesium level was dangerously (read possibly fatally) low and I could have had a heart attack at any moment. Good thing they didn’t tell me that on the phone or I probably would have. Additionally my potassium level was very low. The drip she started that day would be the start of 18 weeks of hell…

During the following 18 weeks I had a magnesium drip once a week. Usually on a Tuesday, then on Thursday a nurse would return and draw blood to check and see how I was responding treatment.

Chemo is a good news/bad news thing. It helps to eradicate any rogue cancer cells from your body but at the same time it destroys the stuff you need to survive. I was physically sick from the chemo and it was depleting my body of the minerals it needed to survive, I just didn’t know it at the time. My eating was sporadic at best and although I knew I had to eat to live, it was a major feat just to get anything down and keep it down. Popsicles were my new found best friend – they kept me hydrated.

During this time I also had to have a CAT scan. Try drinking 32 ounces of contrast when you can barely get down a Popsicle.

Finally in December 2005 my PICC line was removed. I was done!!! It had been over a year since I was diagnosed. Just under a year since my surgery and subsequent radiation and chemo treatments. I had battled the beast and won!!!

I had CT scans every 3 months the first year, then down to every 6 months and finally in Year 5 I had an annual CT scan. That was over a year ago. All my Oncologists agreed that CT scans were no longer needed. (They can cause cancer dontcha know?) I do however have an annual scope. Also in Year 5 I was given the option of not having anymore however, I still do. An ounce of prevention…

The only Oncologist I see now is my Rad Onc. When I saw him in Year 5, I asked if that was it for him too. He said no, he would keep an eye on me for another 5 years. I like that – when I was released by most of my Doctor’s I felt an odd sense of abandonment, one I still have from time to time, but I know that they are never more than a phone call away. I keep in touch with them, more just to say hi but also to keep the lines of communication open should I ever need them again.

Writing this has been kind of cathartic for me. I have never really sat done and spelled a lot of this out. I have a journal from day 1 but have never put it all together. There never seemed to be a need for it. I lived it – I beat it. There were days that I wanted to give up and apparently there were days when I was so close to dying that it’s probably a good thing I didn’t know it at the time. But, dying was never an option for me. I was too young to die and there are too many things left in this world that I want to do.

I still suffer from side effects from surgery and radiation more so than from chemo even though it was the chemo that almost killed me. I have a mouth full of rotting teeth thanks to the chemo and sometimes my thoughts get a little confused, which can also be attributed to the damn chemicals but other than some minor inconveniences I consider myself to be so very very lucky to still be alive.

I am unable to work full time, my body cannot take it. I need a nap for the most part. I have spinal stenosis: I have a cyst on my left kidney stem both possibly from radiation. I have a radiation scar on my right lung which sometimes makes breathing difficult. I have eating issues – what I can eat today does not mean I can eat it tomorrow. Dumping was not an issue until almost 3 years after the fact. My right side is still painful and requires pain medication. However, these are small things in the grand scheme of things. Some of the left over side effects did not appear until well after all the treatments had been completed and there has been some question as to whether they are indeed a result of the treatments or a result of that other malady I suffer – getting older.

I can live with side effects and I am doing my best to do just that! 

Thanks for sticking by me – it is always a comfort to know that no matter how alone I feel, I am never truly alone.

Nancy

Oct 31, 2010.

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I am not ignoring you!!!

I know, I know, I have been pretty lax in posting the last couple of days but I really do have a good excuse.

My plane was delayed two hours on Sunday coming home from Minneapolis.  We didn’t get back here to Brighton until almost midnight and by that time I was just a little tired!  Pretty well went straight to bed and then had to get up at the ungodly hour of 5:30 to get Craig to his new job for 7:00.

Mom, dad and I then stopped at McDonald’s for breakfast.  On the way home Dad all of a sudden got an excruiating pain in his stomach.  We got back to the house ans it hadn’t subsided so I called 911.  The pain was now radiating up into his chest.  The Fire Dept showed up pretty quick, the Paramedics not far behind.  They hooked dad up to an ECG machine – everything was normal, all vitals were good but recommended that we go to the hospital anyway.  They took him in the ambulance, mom and I followed a little bit later.

At the ER dad was tended to by Dr. John Bonn.  I love Dr. Bonn, he was the first Dr. I saw when I got sick back in 2004.  It was because of him that I was referred to Dr. McIlreath – the rest of the story is history!  I really wish that Dr. Bonn would go into private practise – I would be the first person in line to become a patient.  Dr. Bonn reported to Mom and I that it was not Dad’s heart – that was the good news.  Unfortunately there was some abnormal acitivity with his liver and pancreas.  This would require dad being admitted to the hospital and as Dr. Bonn explained dad would need a CAT scan. He also warned that the abnormal activity that was showing was usually caused by some kind of malignancy…

I handled this a lot better than I thought I would, at least on the outside.   I remained calm and optimitic to the outside world.  However on the inside I was panicking.  Pancreatic cancer is the most deadliest form of cancer there is, followed by Esophageal Cancer.  So what are the odds of two people in the same immediate family having both types of cancer?  I don’t know the answer to that question and hopefully I will never have to find out.

Dad was admitted to the hospital and on Tuesday morning had a CAT scan.  We had not talked to the Dr. in charge of his case – so at that point we knew nothing!  Wednesday was  holiday here – Canada Day – and I was assured by the nurses that the Dr. would indeed be into the hospital to see patients.  So I was at the hospital bright and early – 8:00 am to talk to him.  At 2:00 pm I left, I had still not talked to the Dr.  After waiting all that time I told the nurses that I knew the minute I left he would show up and guess what ?? He did LOL.  One of the nurses tried to catch me in the parking lot but I had already left.

The nurses in the Outpatient Unit where dad was  were great.  One Tuesday while mom and I were there I went to talk to them to try and find out what was going on.  Dad was no longer on any IV, he had his CAT scan and unless there was something horribly wrong with him then I couldn’t understand why they were keeping him. He wanted to go home – he hates being alone and was in a room all by himself and I couldn’t see why he wouldn’t have been sent home already.  The nurses that I spoke with agreed and said that if I was willing to take him home, they saw no reason why he was being kept in either.  The unit that dad was in is also the unit where patients who are waiting to be taken to nursing homes or hospice facilities are placed until they can be sent to a different facility.  Dad did not fall into this category but it was the only unit where there was an available bed.  The nurses were actually quite thrilled that I wanted to take him home.  They said they would put a note on his file so the Dr. would see it in the morning.

To make a long story short – I got home from the hospital on Wednesday afternoon and there was a message the Dr. had ordered dad discharged – so off I went and brought him home.  In the meantime, while talking to one of the nurses, she pulled the report from Dad’s CAT scan up on the screen and read it.  I asked her point blank what it said.  She replied that she wasn’t supposed to tell me (I knew that) but…dad had gallstones. The cancer scare was gone – at least for the time being.  I am all too aware of how things can change in an instant.  But for now we can breathe a sigh of relief .

We went to see the Canada Day fireworks that night in Trenton  and they were awesome.  I love fireworks.  I can remember as a child the displays that my dad and grandfather set off every year for May 24th and Labour Day.  Dad had been talking about the fireworks and going to see them since we saw them last year. I was so glad to be able to get him home and then to see the fireworks on Wednesday night.  He seemed fine, no worse for wear, and had been eating normally with no problem.  That was until tonight.

I fell asleep in the chair after dinner and was awakened by Craig in a panic mode.  Dad was in pain once again, this time convinced he was going to die.  He was clamy and sweaty,  felt like he was going to be sick and in incredible pain.  Craig and I got him to the car and I took off for the hospital again surprising myself at how calm I was but knowing that it is gallstones that are causing the problem makes it a little easier than thinking dad has cancer.

We got to the ER and saw the Triage Nurse.  I explained that he had been discharged Wednesday afternoon and that I knew that the CAT scan showed gallstones.  Trenton Memorial Hospital is a very small hospital.  The ER this Friday night was swamped.  There were patients there that had been waiting for 8 hours to see a Dr.  We waited 3 1/2 and still had not been in to see a Dr. so I talked to the triage nurse and decided to bring dad home.  If he has another attack I am to return him to the hospital. The nurse told me that in all likelihood the only thing that would be done for dad was a presciption for a painkiller/relaxant that I could administer at home.  That’s all well and good except there would not have been a pharmacy to get the script filled at anyway so it was kind of redundant to stay.  If it happens again tomorrow I will take him back to the ER and hope that it is not as busy as it was tonight. I am hoping that we do not have to make another trip to the ER and can wait until Thursday when we go to see Dad’s family doctor and can get a script then and hopefully some direction on what happens next. 

The worst part of all of this is that with Alzheimer’s lurking in the background Dad gets very confused and very scared.  Rightly so, I get scared too and I am not the one in pain.  I can see it on his face when the attacks happen.  I know that kind of pain and I am fully cognizant and aware of everything going on around me.  I cannot even begin to imagine how frightening it would be to be 77 years old, in that kind of pain and not understand what is going on.  I just hope we can get over this hump and on to the next one LOL – and there will be an next one, I am sure of that!

So, that’s my story and I am sticking to it!  I have not been ignoring my blog, nor you, my most awesome reader’s.  Honest!  And I am hopeful that I can get back to some sense of normalacy and tell you all about my trip to Minneapolis in the next couple of days. It was truly a weekend to remember!

If you are an American friend – I wish you a very Happy July 4th weekend.  Be safe – enjoy your holiday.

Nancy

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.

Update on Doris and Adam’s surgery today.

Doris’ husband Joey left me a voice mail tonight as I was not home to get his call.  I did try and call him back, but it was late and I am sure that he and the rest of the family had a very long day so I will relay what I know so far.

 

Adam went into surgery this morning at 8:30, with his mom, Doris following a couple of hours later.  Apparently Doris was more sick that the Doctor’s had thought but that did not stop the transplant from going ahead.

As of about 7:30 pm EST tonight, Adam was doing well but there was no real word on how Doris is doing.  I am hoping that I will be able to speak to Joey tomorrow morning and I will post as soon as I know anything.

 

Again, I would like to thank all of you who granted my request for Jean, Doris and Adam.  I truly believe that there is strength in numbers.

 

I hope to see Jean Wednesday night at the Pampered Chef party if she is feeling up to coming.  My bronchitis is in the last stages (I hope) and my antibiotics are almost gone so I am feeling confident that I am not longer a threat to anyone’s health but perhaps my own LOL.

Later,

 

Nancy

Lunatic Rantings

So, the new dishwasher is going back.  It is sitting in the kitchen, full of water and dirty dishes.  Why? you ask?  Well the damn thing doesn’t work that’s why.  And I am so angry that I cannot even begin to get mad.  It has been here for less than 1 week – yep that’s right.  It was delivered last Tuesday with stuff missing.  Wednesday I went and picked up the missing pieces and Thursday loaded it up.  It worked fine, although there was a little more water in the bottom than I had expected, but it has a function that you can hit the start button twice and it will drain.  So I did, and it drained out some of the water.  Due to my inexperience around dishwashers and after reading the non-user friendly manual I came to the conclusion that not all the water would disappear. 

Saturday I had enough dished for a full load so again I hooked it up and let it start the cycle.  Half way through I walked into the kitchen and the dishwasher was totally silent.  I thought it was just getting ready to changes cycles and went about my evening.  At 10:30 pm it hadn’t done a thing.  I tried the two push drain mechanism – nope, nothing.  Realizing that there was nothing I could do until Sunday morning I unplugged it and headed to bed.

Sunday morning first thing I called Leon’s only to find out that Leon’s doesn’t open until noon on Sundays.  When I finally got through to my salesperson Adam he immediatley passed me on to customer service.  Fran in customer service told me that she would have to call me back because they were in the middle of a power outage and she could not pull up my order on the computer.  I told her that was fine, but bottom line was that I wanted the truck that delivered to Brighton on Tuesdays to pick up the dishwasher and take it away.  I did not want it repaired – it was less than a week old – just get it the hell out of here!  She said she would take to the manager and call me back as soon as the power came back on.

True to her word she did call me back later in the afternoon.  For some reason I decided that I was not going to get angry with her – it’s not her fault the dishwasher doesn’t work but at the same time as a representative of Leon’s she better have good news for me!

I have to go to Leon’s on Wednesday and pick out a new dishwasher.  They had no more of the one I got so they could not just send out a replacement.  I am more angry about the inconveinece of the whole thing more than anything else.  I understand that Leon’s is not to blame – they cannot be expected to test drive every appliance they sell and even if they had have it would have worked the first time for them anyway.   And besides Wednesday would have been my first “ME” day.  Mom and Dad start a Day Program on Wednesday giving me some much needed time to run errands and the like.  But instead I will be at Leon’s picking out a new dishwasher…there had better be some major sucking up done by the Leon’s staff on Wednesday…

I finally got the living room…Landlord man was here on Saturday and opened the door to the room and sealed the door to the store.  Dad and I spent most of Saturday cleaning the room.  He swept and I washed the floor.  Damn, it’s a big room and a big floor to wash.  I also polished up the fireplace but there is some type of film on it so it will have to be washed with Murphy’s Oil Soap.  It is a beautiful old fireplace with a natural gas insert so at least next winter we will be warm in the big room.  I will try and post some pics this week of the before/after.  I want to have it painted and Landlord Man gave me permission to paint it.  However, I did ask Landlord Man if he was planning to try and evict me at the end of September…

He has become quite humble the last couple of times I have seen him.  I am not sure why but for whatever reason he is much more accomodating than before.  When I asked him if he was going to try and kick me out at the end of the lease he said that as long as his tenants pay their rent and the mortgage is paid he is fine with that.  I will be sending him off an email to re confirm our discussion and to cover my butt – I have learned, no thanks to him, that the best way of dealing with him is to get it in writing and so I will.

I am having a Pampered Chef party on Wednesday night in my new living room. I have invited about 30 people.  Wether they all show up or not who knows?  But at least I know the “core” will be here.  We have been having these pampered chef parties now, about one a month moving them from house to house so atleast 7 people will be here.  LOL.  It’s a fun night and I get cool stuff for cheaper than I have the last 6 parties.  Pampered Chef does have nice quality products but I think they are a little over priced on some things.  But this week it is my turn to get 60% off so I think the Stone Baker is going to be gracing my kitchen in the very near future.

I was supposed to work last week but this bronchitis thing just won’t go away.  It is much better than it was but now mom and dad are coughing too.  It never fails, one of us gets something and just as we are getting ove it the next one gets it.  I have figured out that we have spent the last 7 weeks being sick in one form or another and honestly I am sick of being sick.  I am just so damn tired all the time and never get anything accomplished that I set out to do becasue I am so tired.  The anti-biotics that the Dr. gave me don’t seem to be working so I have given up on them and gone back to my old standby script of Amoxillin and Clavulin.  That one works!  Dr. Man is not going to be too impressed but I really don’t care.  The one he gave me isn’t working and I have come to learn that I need to do what I need to do to be well again.  I don’t have time to be sick.

Have a great week

Nancy

Update Time

I haven’t had a whole lot of time to spend here lately so it’s time to update.

Everyone is finally over the 48 hour bug that lasted a week.  It wasn’t pretty and I am glad it is over and will cross my fingers that it never returns.  The fallout has been minimal, however it took me getting sick to realize that I cannot do all this on my own – I need help.  The pre-case worker from Community Access called on Saturday to get some prelim information.  She says that my situation sounds like I am eligible for some help – perhaps a Personal Service Worker to help with Mom and also someone who can watch mom and dad while I get to go and run errands.  Fun wow – but it is easier than always having to take them along.  She told me there are only 2 case workers for Brighton which is kind of ridiculous considering it is a town of mostly old people who need the service.  But I guess Government money only goes so far.  Hopefully a caseworker will contact me this week and we sill be set up within 2 weeks.  Let’s see how that goes.

 

Landlord Man update – the news we have all been waiting for.  It was not as good as I had expected but I will be getting back all the money that was overpaid in illegal rent and the cash I spent to have the dryer repaired.  He has until March 6 to repay or I can take it off the rent going forward for the next couple of months.  I know he won’t be sending me the cash anytime soon so I guess that means reduced rent.  This is a good thing – I can save more money for my trip to Lake George and Minneapolis in June.  Madam Chair hd some comments for him – mainly that he needs to learn the Residential Tenancies Act.  What really burns my btt is that although she even says in the Order that he has a “blatant disregard” for the Act she did not fine him.  Nor did she allow my request for compensation re the hydro and gas as “it is not a matter of maintenance or safety and therefore not allowed under the Residential Tenancies Act”.  So my next step is to take him to Small Claims Court.  However, I am also looking at having him charged under the  Criminal Code of  Canada for Theft.  I am waiting to hear back from some Police buddies on that one.  The gas bill for last month was almost $600.00.  It has never been that much – the most was last year for a month at $360.00.  The furnace is running all the time because the heat is being sucked into the next building.  I also found out last weel that he had the hydro shut off in that building because he didn’t pay the bill.  The basement apartment flooded when the snow began to melt and he had to hook up to my hydro to pump it out.  The sump pump is still hooked up to my hydro – he doesn’t know that I know that but I have the pics to prove it now. 

I went through a phase last week when I thought I was becoming the tenant from hell but then realized that I am not doing anything more than standing up to a Bully and a thief.  I am not the bad guy in all of this – he is and quite frankly I despise the man and everything he does.  So perhaps I am becoming a little vindictive in my old age but I think not.  I am just sick to death of being taken advantage of because I am a nice person.  Enough is enough.  Had he asked to use the hydro for the pump chances are I would have said yes – however, instead he just went ahead and did it.  Not a smart move in my opinion.  This is a man who broke the law on numerous occassions and then had the audacity to tell Madam Chair that the reason that I hauled him up in front of the Landlord Tenant Board is because I was mad that he “fired” me and my friends from his store.  That is another point of contention – he has told people that we stole from him. When I confronted him on this issue and said – “Ok well you have the surveillance tapes lets see them.  Show me where I stole from you”.  He shut right up and said that those tapes were none of my business.  So I further baited him “Ok, then have me arrested for stealing and the tapes will be your proof in court”.  Again I was told that it was none of my business. So, how does that work.  I am accused of stealing, he has the tapes to “proove” it, yet they are none of my business???? HAHAHAHAHAHAHAHAHA.  I know I did not steal anything from him so I also know there is no tape showing me doing so.  So I guess, this could be another one for Civil Court…

Bosco has an ear infection as per usual although this one sems to be a bit different than the ones he normally gets.  It almost looks like more of an allergy than the usual ear infection.  We are off to the vet later this week.

Now that mom and dad are back to being well (?) their normal activities this week will resume.  Mom is off to her Woman’s Group tomorrow afternoon. Bowling is scheduled for Wednesday afternoon, Dad’s Men’s Group Thursday morning and BINGO thursday afternoon.  Somewhere in all of this I hope the caseworker can make a visit and get us on the right track with some help. 

I am tired all the time.  At first I worried that perhaps my EC was rearing its ugly head again but I don’t think that anymore.  Looking at my sleep habits and my full schedule it is not surprising that I am tired.  I am getting too old for all of this LOL.  I need a break and am so looking forward to June when I can get away and have no responsibilites for a  couple of days.  How nice it will be not to have to get up,  make meals, do the dishes and spend the day doing it all.  If only I could win the lottery…

That’s it for now.  Hopefully I haven’t left anything out.  It’s time to get dinner ready – what else is new.

Hope your week is filled with fun and frivolity.  Life is short, eat dessert first.

 

Nancy

A week later…

…and we are slowly returning to “normal” around here, whatever normal happens to be for the day.  There are alot of things that most people would consider bizzaro in this home, but the one thing that remains constant is mom’s need for sleep.  She would sleep the day away if we let her.  I am sure this is part of Alzheimer’s.  If not, then I may have more problems showing up than I thought.  She is always tired and could sleep right through the day and night if we let her.  I will not let her though because I am afraid that sooner or later she will be up all night if she sleeps all day.  I am hoping that since the period of daylight is getting longer her need to sleep through it will get shorter.

We missed all our activities this week because everyone was not feeling well.  I decided that it was better to keep everyone home rather than take them to their group things and pass on whatever it was that we had.  Their group activities are attended by mostly seniors and I knew how we all felt and I wouldn’t wish that one anyone else.  Dad was particularily upset that he missed his group.  He really enjoys getting out and “chatting” with the guys.  I think the men do more chatting than the women, only about different things.  It would seem that all the men have “war stories” about their former careers.  It’s a really nice group of men that met on Thursday mornings.  They are all really cute.  I just love old people. LOL.

Mom’s group is very grandmotherly like.  They drink their tea and coffee out of cups and saucers which I think is a really nice touch.  There are some women there that are recently moved to Brighton from other places and they are also very “British”. 

Both groups are put on by the Community Care Centre.  They do wonderful things for our Seniors.  They run the Wheels on Meals program which feeds over 50 seniors on a daily basis with a hot meal.  The program is staffed by volunteers and everytime I walk into the centre to drop mom or dad there is a wonderful aroma of whatever that day’s meal is.  The week before last it was a cherry – lemon cobbler that had just come out of the oven…oh my, it sure looked tempting LOL. 

We also missed Bowling and Bingo this week.  So we will have to pick up next week where we left off.  I am going to talk to Sue about maybe doing the paint/craft this this week.  I know that Dad and Ivy are looking forward to bowling again so crafts can always wait – and besides the pain I bought kinda sorta froze in my trunk LOL.  I forgot it was there until yesterday when I was loading groceries.  Ya ok, I know, sometimes I should be blonde!

It’s bright and sunny today so perhaps we will just go for a ride.  I don’t know how cold it is – when Bosco came in from his last trip to the backyard his back was warm so the sun must be emitting some warm rays.

To everyone who emailed, left messages – thank you from the bottom of my heart.  I truly appreciate the care and concern you all show for us. It helps to know that I am not alone.

Have a great day.

It’s good to be back on this side of sick.

When the Caregiver needs Caregiving (warning graphic descriptions herein)

It all started Saturday morning.  I woke up early to get ready for a Relay For Life breakfast at the local high school.  Unfortuneatly my body had other plans for the day.  After almost choking on a piece of toast I grabbed some oj to try and wash it down.  When that didn’t work I hightailed it into the bathroom to try and throw the little sucker up.  Lo and behold, instead of throwing up I was faced with a different problem.  I headed upstairs to shower and change.  I spent most of Saturday sleeping on and off and running to the bathroom about every 15 minutes.  Most times I made it, some I didn’t.  I tried to make dinner for mom and dad but didn’t have the energy to do much more than hold my head up and try to tell mom how to warm up some chili I had made for dinner on Friday night.  After dinner I grabbed a ginger ale and some plain cherrios thinking that I needed to put something in my stomach.  I wasn’t sure what but I needed something if I was going to stop the endless stream.  The cherrios and gingerale stayed down and Saturday night passed almost uneventfully.   I had one or two runs (to say the least) to the bathroom but I had ample warning and no more messes.  Sunday morning I got up and had a piece of toast and 1/2 cup of coffee. Anyone who knows me well, knows that 1/2 cup of coffee just doesn’t cut it for me but I wasn’t going to take any chances.  As the day progressed I felt better and better.  My jaunts to the bathroom slowed considerably and I was drinking more and more ginger ale and eating cherrios.  I felt that we had averted a real crisis and we could get on with it.  That changed in a New York City minute.

I was in the kitchen trying to clean up when Dad yelled at me to come quick.  Mom had fallen in the bathroom.  I literally pushed him out of the way and ran in.  She was lying on the floor.  When I spoke to her to ask her if she was hurt in anyway, she could barely speak, speech garbled and very incoherent.  She thought she was sitting on the toilet.  She was clammy and sweaty and by the time we got her up off the floor she was able to speak.  I got her into  bed, where she said she wanted to go and she drifted off. 

The next alarm came when I was called downstairs by a frantic dad.  As soon as I hit the ground floor I could “smell” what the problem was.  Great, she now had what I had previously.  We got the bathroom cleaned up as much as possible.  While doing so it became apparent that the bathroom sink was leaking. I mean apparent by the pool of water forming on the floor.  Dad was a real trooper, cleaning up what he could.  I, on the other hand had to leave the room several times.  The smell was overwhelming and in my already not feeling well state it seemed exaggerated 100fold.  I got mom into the tub and showered her off, redressed in some clean clothes and back to bed.  About 15 minutes later it happened again. I asked her how her stomach was feeling ans she said she was hungry. This is always a good sign from mom.  I have always said that if mom or Bosco stop eating there is a problem somewhere.

Not be able to cook a real meal I popped a couple of TV dinners into the oven.  The third time I knew we were in trouble.  I asked dad if he was ok on his own and headed out to the drugstore.  If we were going to get through the next 36 – 48 hours (based on the length of time I was not well) then I needed reinforcements.  It was 5:40 pm.

For what ever reason the closest drugstore was closed. The door said they were open til 6:00 but I guess in a small town, 6:00 pm comes early on a Sunday night.  Keep in mind I was in my pj’s and slippers with my winter coat thrown over top.  Quite a sight.  I jumped back into the car and headed for the next drugstore – ok, they were closed, but their sign in the door did sayt 5:30.  Off to No Frills.  Finally somewhere that was open.  I picked up the needed supplies and headed home.  Damn, I’m fast, 20 minutes and I was back in the house.

I loaded mom up on Imodium while dad ate his dinner.  She tried but couldn’t get anything down and went back to bed.  So far, so good.  I wasn’t eating but told dad I would have a coffee with him after dinner. 

It didn’t take long before mom was back in the bathroom.  She was pale, clammy again and had not quite made it in time.  However, the adult under garments I had gotten at the drugstore helped to stem the mess.  We got her cleaned up again and back to bed.

Dad and  I sat down to watch some television.  Everything was ok – mom was sleeping, Bosco was sleeping with her, dad and I were watching CSI:Miami.  At 10:00 I made us some toasted crumpets and coffee.  He went to bed and I went upstairs.  I had slept most of the last two days on and off so I was far from tired.  And since I haven’t had any real food for the same amount of time I didn’t think it was a good idea to take my meds.  I will probably pay for that in the long run.  So far my stomach isn’t too bad but the pain is. 

At 2:50 am I heard movement from downstairs.  By the time I hit the stairs running and got to the bottom I heard retching…I knew that sound – many times I had heard it coming from the bathroom when my father had a migraine.  This is wonderful – now him too.  When it rains it pours.  Luckily enough dad is still in some control of his facilities.  Aside from some memory failure and an arthritis problem he is, overall, not even close to the level of mom’s decline and/or progression of Alzheimers.  I got downstairs in time to help him into the bathroom.  He had the presence of mind to grab something when he started throwing up so there wasn’t a mess to clean up.  However, by the time I got back into the bedroom mom was up and throwing up.  She did not have the same quick thinking process and most of herself and the carpets on the floor were covered. 

The floors of the house are hardwood so I have strategically placed throw rugs all over the place.  I picked up the last 2 on the floor in their room and took them outside to put into the bag.  I think I will be spending sometime at the laundromat tomorrow.  Between mom, dad and myself there are 3 garbage bags full of dirty laundry…and it still isn’t daybreak yet.

So, it’s 3:45 am.  I am wide awake, afraid to even lie down in case mom and dad need me downstairs in a hurry.  I made Bosco come upstairs with me and he is sleeping soundly on my bed – straight across it – I couldn’t go to bed if I tried.

I can’t do this.  I feel totally out of control and like a complete failure.  I made a solemn vow to myself that I would do whatever it took to help mom and dad and today I dropped the ball big time.  I got angry, yelled at mom, wished I was somewhere else, anywhere else.  I cried to dad that I was sorry that I wasn’t taking care of them like I told them I would.  The house smells so bad that I am not sure if m own stomach will last until morning without revolting. I have washed floors, cleaned toilets, tried to maintain dignity for all concerned and failed miserably. 

I need help – the caregiver needs caregiving. For the first time in a long time I miss Jeff.  I miss having him to hug me and tell me that it’s going to be ok, his shoulder to fall asleep on.  I need a break, I can’t even get sick and it’s only some stupid stomach bug.  What happens if my cancer comes back?  Who will take care of them ?  Or me?   I must have been some nasty mofo in my last life, because I am sure paying for it now.