Chemo & Your Heart Are You Aware of Side Effects?

 Lets see I began this roller coaster ride nearly 7 years ago starting out with Stage 3 Grade 3  Breast Cancer,, did the chemo skipped radiation began the other crappy drugs they tell you are good for you....stayed on them for well over a year and some but decided I could no longer tolerate the horrendous side effects.  I still wanted to walk not limp but can't have everything can we my cane is always right there...

This has been a bad year for me in terms of not feeling great shortness of breath my inability to sleep without feeling as though I'm  suffocating.  Fluid in my lungs  Hospitalized 3 times within 4 months..  Dr.'s change my meds play around with  scheduling  release me I'm good for 2 weeks,  I begin to tank out. Retaining fluid like I'm a storage  container..   The same old breathlessness can't walk half a block without feeling I was going to pass out.. Did I mention I'm not nearing 100 in fact there are some who are in better health.  ..

The Heart Specialist  told me  I have Malignant Hypertension and Congestive Heart Failure each episode I have is now considered a Hypertensive emergency  ..my blood pressure is so out of control it's difficult to stabilize, I start out well  within days or sometimes hours my b/p is all over the map again.  I was admitted to hospital over a week ago with a reading of 238/125 put in ICCU for 3 days. Transferred to the Telemetry  to be monitored 24/7
did I mention that I was told I also have a "Tortuous Aorta" ?

 When you meet  your Oncologists for the first time  told you need Chemotherapy, your entire faith and trust is put into their hands. They know what you need . You are given different protocols of treatment often more than one kind of chemo is used. I had FEC  the second chemo I had was Taxotere. I was told my fingernails may come off, but this one wasn't as bad for side effects  as FEC.. really? Up  few years  serious side effects start developing . I had severe neuropathy I could barely walk the pain was so debilitating. I often need my cane to get across the room.

I haven't come to terms with any of this yet I am still trying to understand what I don't understand. Why aren't we told there could be the potential of serious heart damage  or failure  if we do these chemo treatments?  Somehow I don't remember "that talk" with my Oncologist.. pretty obvious if we were told it would certainly throw a wrench into the Pharma companies selling their poisons how many would actually go through with it or would it compel the companies  to  find less damaging alternatives?  Isn't this supposed to be part of all fund raising millions of dollars in donations. Is it just  all about early detection..? the remainder  left out in the cold?  I know I'm not the only one dealing with all this crap.  I'm so  sad, upset but have to keep my stress level low.  I have not had any new  cancers or recurrences but I end up with something just as life threatening if not worse . I am now taking 20  pills a day to keep my b/p in check that never stays that way for long..  . Add to a   Renal Diet.. Having b/p reading over the 200 level  consistently will have a negative effect on your kidneys..  also trying to adjust to a fluid restriction. I am allowed 1.5 liters of fluid a day.  A Nutritionist  will be helping me with the adjustments. The fluid restriction I expect will be difficult to stick with 100% No more huge cups of coffee or tea everything  measured.

This isn't exactly the "Quality of Life" I expected nearly 7 years after  Cancer treatment.......

Let's be better informed....
Alli.......

Sandra Fredericks RIP

Last month I spent another week in the hospital.  I was admitted to the CCU for some tests CTScans etc. I had a private room  quite nice all the amenities that a  good Coronary room should have lol.. Of course how would I know except for  staying there. Towards the end of my stay in hospital, I was moved into another room that was  empty when I arrived but the following morning  another lady was transferred , she and I were "roomies"  You couldn't help but like her from the start. She  was a lady that had an incredibly big personality!  She would laugh loud talk loud   Very rarely you didn't see her without a smile. She had some serious medical issues but she was dealing with them the best way she could.

When I became mobile again  I would walk (and it was quite a hike)  to the main floor .. I'd say "Sandra I'm going to grab a coffee , want anything?  She'd get this mischevious smile on  she'd say yeah can you bring me a cookie? well I didn't because she wasn't allowed She complained about the food (so did I it was gross)  So I would walk with my walker  grab 2 coffees at Timmies inside the mall area of the hospital and I do mean mall area Several little shops.

All Sandra wanted was a Bagel & Cream Cheese and I had an Evwanted. One day she got up walked with the walker down the hall. She did great. We'd have these philisophical discussion on  the Young & The Restless.. All the recent changes with 2 identical Jacks and how Phylis could not  tell the erything Bagel .. By the time I got back she'd be fast asleep in a special chair for her.. You see Sandra had a few extra pounds but that didn't stop her from doing what she difference from the imposter to real Jack... Well the show was changing probably new writers that graduated from the ABC of writing..

We'd talk about different things. We both saw the Priest had Communion the next Sunday..
I really liked her a lot.
Sandra always had company from morning till night time she always had visitors.  You could just see how everyone loved her.  Her gregarious laugh  She's the kind of  friend that you would want forever.. I had panned on visiting her this week if she were still in hospital.

I was reading the newspaper and suddenly felt as if lightening struck me.
 I read the Obits you don't know who you know may have passed away. Having Cancer I have known many women that have died.

There is was a beautiful coloured photo of Sandra.... Sandy Died....September 19th.  To say I was in shock would be putting it mildly. I was in tears because I really though she was going to be Ok.. She'd be on a good eating plan exercise and she'd move into a new place that was a little more manageable ..

Yesterday was her burial.. I'm sure it was beautiful. I would have liked tohave gone but I've not felt well all week.

I did go to the visitation at the Funeral Home.. I think Sandra would have loved it. The room was full of people.... laughing talking. A few people recognized me from the hospital. They gave me hugs and welcomed me.   She looked very lovely and peaceful. I will never forget her. She's the kind of person that is just to hard to forget.
The day she died .. The World Became A Lot More Quiet!!
Rip Sandra.... Love Alli......

Does it get easier?

This week a young woman that I really didn't know apart from reading her blog and her posts at another Breast Cancer group....  She hadn't posted anything since around January , I was checking nearly every other day. According to what she had written she wasn't doing that well.  She was young in her very early 30's. A mother of 2 young sons and she was a wife, she loved her family They loved her back equally too. Allison died the other day. I recall one posting she made her mom thought it was time she consider Hospice  There was a lot of rage against the mother in one particular posting group.  For one minute  walking in her shoes  If we were the mother of a daughter who's cancer was progressing  rapidly, she was becoming weaker.. If we had a child who was dying who's to say how we'd react.. I remember writing I didn't think the mom meant malice towards her..nearly had my head bitten off too..  Cancer makes you feel helpless. .I honestly believe she had her daughters comfort in mind. Not some insidious plot to put her away. There is still so much stigma  associated with Hospice & Palliative care. 

I have spoken with others who are still re-current free. We seem to be on the same page that we are just as scared today -if not more at times.  The thought in spite of pretending you don't think about it, or family and friends think you are cured just don't get it you're blown off  only to be told why worry about something that isn't there? But it is there somewhere lurking..
Folks will tell you you shouldn't think those negative thoughts.  
Fact is we live it.. Allison Lutz lived it every day since she was diagnosed...  So many before her and there will be many after her.

We are all so fragile.... 

Rest in Peace Dear Allison...... I didn't know you but you touched my soul.......

Love Alli......XOX  

Do You really Know What You Are Taking?

Often times we ask our  Doctors to give us something  to relieve pain, infections and many other reasons. 
We put our trust in his hands knowing he is going to give us  the best medication for what ever ails us.

We take our script to the pharmacy  wait to be filled off we go home blindly believing taking this drug will be the cure.
However how many  people actually stop question either your Dr. or the pharmacist about  side effects , and what if any interactions might occur if taken with other meds you may be taking.
We pop a pill expect to feel better instantly.  Sometimes the results are not what we expected. 

In February this year I woke up one morning put my foot on the floor and  there it was the most excrutiating pain I had ever felt, The pain  ran right through the sole of my foot into my heel. It felt as though I had just stepped on a hundred straight pins  at once that hit every nerve on the bottom of my sole. I was in agony!  I had to get up , I had no other choice I had to try  walk otherwise I'd be stuck in my bed. I wrapped my foot with tape found a heavy sock wore that to cushion my foot. At least it softened the pain. This pain continued  unrelenting in fact it became worse over time.  The pain was so intense the only way I could walk was with a walker or cane. I had Neuropathy.. I live alone there was no one here to help me.. 
I called  my Dr. he was kind enough to make a house call prescribed "LYRICA" 
After a few days taking the pill I felt a minor  amount of relief. Reassured that it will go away I continued to take the drug. 
I was sitting in my living room I swore I saw a Lynx run by my front window... I was hearing people in my house in fact one morning I called the police because I believed someone had entered my house  some things were disturbed.  They checked looked around no one was there both doors locked with dead bolts screen door locked. No way of entry. I felt stupid. 
I would be sitting in my chair I would suddenly find myself falling to the floor  Though I had lost control. This was occurring with more frequency. One week the ambulance was called to my place 5xs.. I had fallen I couldn't get up my foot was still very painful. I'd sit on the floor sometimes for hours trying to figure out how to get up.. I had no choice but to call.. I'd be sitting at my desk suddenly  be startled after hitting my face on the desk  so hard my glasses dug into the bridge of my nose cutting it. 
I confided this to a friend they told me the Lyrica was getting me high and it was creating hallucinations  bizzare thoughts and was causing me to black out... I was stunned , I had never in all my years experienced anything like this. My Dr had taken me off immediately and I decided to fight this Neuropathy through wrapping my foot soaking keeping it warm  and hope for the best. The pain did eventually subside..

A perfect reason why WE must be our own advocates!  At no time was I informed of these possible side effects. Or was I given information for side effects from my GP and Pharmacist.  I blindly was taking a drug that could have had serious consequences.
I ask questions now on.. I want to know what side effects are possible not just the same familiar listing but the hidden ones that at times say "Could cause death" 
I am sure that LYRICA is an excellent drug and does what it's supposed to for the majority, however there are some like me who have a low tolerance to whatever chemicals are used to produce it.  Below is a link  for side effects.
Side Effects Lyrica

We have to make certain we know what we are  taking, what may be  good , is not always the case.
My Neuropathy is getting better I still periodically have some pain in my foot but  the relief  is  no more hallucinations seeing a Lynx run across my yard or strangers in my apt. The strangest was having conversations with  people who were not there.... That's scary!! Take Care Alli.......xx

It's been awhile...

It's been a while since I last blogged nearly a year  if not already.. I had forgotten how to put these together. I'll just blame it on chemo brain..

When you have an illness you tend to become consumed with learning every detail every single nuance that pertains to it. Look for similarities with others are they experiencing the same thing? If not why me?  We become expert  researchers thanks to google and other sites .. Sometimes actually believing we know more than the Doctors.. but you know maybe we do, of course not the medical but we know ourselves.

 We have to be our own advocates. Friends and family may be well meaning. However the  ultimate decision and choices we have to make at times may be difficult but they must be "OURS" 

What I have learned is to "Find my own voice"  I have had a few serious health issues this year. I have been in and out of hospital  one stay for 2 weeks  another  for a week In fact I was released this past Tuesday.. Other times my Dr insisted. I go .. See the Emerg. Dr.. as much as they wanted to admit me I was not going .

I have hypertension problems that have been quite out of control.  More of that on another blog post.

Right now I am sort of kind of re-introducing myself back to the blogging community  I hope you will support my ramblings at times. 

I plan to try to avoid deep moody broody posts as I did have that tendency of getting quite dark..
No apologies we all get there once in awhile..

Now I hope to get caught up with those blogs I have missed and others who have since began.. 

This has been a perfect summer with the hot weather, you won't find me complaining. Look how quickly it came and went!! I am not looking forward to winter in the very least.. 

Good nite.....Alli....XX