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Thursday, July 30, 2015

Unexpected - Life after diagnosis

I know - I am known as that happy go lucky Purple Pam chick.  And to be honest - I really kinda like it that way. I like being happy go lucky.  I have claimed Proverbs 31:25 as my verse:

She is clothed with strength and dignity and she laughs without fear of the future.

All things considered - I claim this for me - all things me. I laugh without fear of the future.  Christ is my future.  His grace is sufficient for me. I have no doubt.

But you know what? It is just really hard some times. He never said it would be easy. And right now is just one of those times. It's not easy.  Cancer sucks. Chemo sucks. And yeah - strokes bite the ever living big one.

5 years ago I was diagnosed with Renal Cell Carcinoma. The discovery of my kidney cancer was "accidental". A tumor on my right kidney were found in an abdominal CT Scan for something else entirely. I was fortunate in that the tumor was completely contained in my kidney and had not spread. They removed the entire kidney, and did all the appropriate scans.  I didn't need chemo or radiation, etc...

I was monitored for 5 years and was about to be "graduated" from that program when they discovered the Acute Promyelocytic Leukemia.  I remember feeling with the RCC that even though I was a Cancer Survivor it almost wasn't real because even though I had cancer and I was being monitored - I didn't have to have any of the traditional therapies for it.  With APL it has been completely different.  I mean - I immediately spent 37 days in the hospital.  Within the first few hours at the hospital I had my first chemo treatment. And 2 days after being admitted I had a stroke while sitting there talking to the nurse.

So, you wanna talk denial?  I joke about it all the time - but actually experiencing it - real mental denial - really kinda freaky.  Because I went in it - quickly and big time. I wouldn't even say I had a stroke.  I knew I had one, but I would say I had a blood clot somewhere that had to be dealt with - not a brain stroke that was literally affecting the whole right side of my body in a pretty bad way.

Clothed in strength and dignity.
Clothed in strength and dignity.
Clothed in strength and dignity.

Not something easy to actually do when you are living with Leukemia and a stroke. Plain and simple.  I don't know how else to say it.  It's just hard to clothe yourself in strength and dignity.

And I keep thinking that this is going to get easier.  It's got to get easier. My plan was to do one infusion round in the hospital (original round I was there for 37 days for), have a break and then do a consolidation round of  5 1/2 weeks chemo, get another break, and do my second consolidation round very similar to the first consolidation round before being released to maintenance which would be 1-2 years in an oral fashion that I can hope to get someone back to life - go back to work, etc... My eye was on finishing that second round of consolidation therapy - getting through the break after that to see how I had recovered from the stroke and chemo so that I could go back to work, etc...

But lately I'm beginning to feel like ...... life is just never going to be the same.  From here on out - I need to get used to a new normal for me. And to be honest - I don't like that ... at all.

The stroke has affected several things on my right side that may never get better than they are right now. We can hope and try, but they may be the best they are. I can't make a full fist with my right hand. That whole arm is not very strong even though I have been exercising it. Those two things may not get better. I also have some problems with my right eye. We jokingly call it my "stroke eye". You can see it in pictures when I am smiling - it droops. Docs think that will be permanent.

And then there are my feet. Ouch. They hurt so bad. Both of them. Census is this is not the stroke because it's both of them equally.  This is cancer and chemo. They feel like they have been asleep, but they feel like that all the time.  And they get worse at certain times - and when they do it's AWFUL! Pins and needles all over.  In particular from the balls of my feet to my toes, and also in the arch of my feet. In particular, at night - I want to cut my feet off, and as chemo goes on and the bone pain gets bad it spreads up my legs. I am told this doesn't go away.  Like neuropathy - at best my toes and feet may go numb.  I've talked to people who have it 10 years out and it still causes them to trip and fall. Great!  Fantastic!  Let's laugh at the future together - shall we?

I'm not looking for sympathy or anything like that.  I just think that this whole experience was so foreign to me. I expected to be able to get through this whole cancer thing and be feeling better.  I knew it would suck - that it would be hell to get through - but that if I could get through it - I could make it to the other side as that Purple Pam chick who was so happy go lucky. His grace is sufficient for me, right?  But recently I read an article that perfectly said exactly what I was thinking.

I Lived Through Cancer and It Still Sucks

It really touched me.  I hope you will click through and read it and get as much out of it as I did.

And I sure hope that my stroke/chemo brain has not killed this blog post.


2 comments:

Linda Byrne Horn said...

Your brain, your stroke chemo brain, is alive and blogging with heart! I am glad to know you!

Linda Byrne Horn said...

Your brain, your stroke chemo brain, is alive and blogging with heart! I am glad to know you!

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