Sunday, June 24, 2012

A song and a prayer


The OSU James Cancer Center / Stephanie Spielman Center prides itself on "teaching their patients".  And they do an awesome job of it.  You can hear them teaching a new cancer patient every week somewhere in the halls and rooms and beds and recliners - they are telling it all over again and again.  And they will patiently tell that same patient a lot of the same information over and over again, along with the new information they need that week.

After this past week, I am a slow learner it appears.  

'They' teach you about chemo at the beginning so you know when to expect "fallout".  Carbo hits you pretty hard on day 4, day 14 and day 21  making your hemoglobin and platelets just wash out and look like they were consumed by mustard gas - because maybe that is part of the compound of carbo.

At least with my treatment schedule.

Taxol hits you day 2, day 7 and day 14, and then for however long it wants to linger around, washing out everything.  The compound that makes up Taxol is non-soluble in water.  In fact, after reading the following quote one feels a bit - well I am not sure of the correct word here so I'll just let you read:

"Taxol is given into a vein, but in order for the body to absorb the drug, it must first be dissolved in a solution. Taxol's history began over forty years ago. It was found to be virtually insoluble in water. It had the solubility of a brick. The compound wouldn't dissolve very much in any solution. Without a way to get it into a cancer patient, what good was it? It was discovered that something Taxol would disolve in that "might" work in a reasonably "safe" intravenous solution in humans, was an elixir made of castor oil and marketed as Cremophor EL. It was the "only" answer. However, this castor-oil carrier is suspected as the culprit behind the misery which includes nausea, vomiting, joint pain, appetite loss, brittle hair and tingling sensations in hands and feet (neuropathy). The much ballyhooed drug was no panacea."

And yeah, I am reading more, and my reading comprehension was just fine on this article.

'They' keep teaching you this over and over because they know your brain is not working so well, and that you won't remember.  'They' also want you to be prepared and know that if you have had week after week after week chemo treatments, that you are being hit with all those treatment side effects sometimes on the same days.

It's a cumulative effect and I have had some pretty hard day 14's that include day 21 and day 7; or day 21 that include day 7 and day 14 as well.

Each Wednesday they ask me my energy level, then look at the calendar, point at it for me, and tell me "this is because you had Carbo 21 days ago, Taxol 14 days ago, and Taxol again 7 days ago".  And, you've had nine Ro treatments in that same three week period.  When you feel like that, "go to bed for a while" 'they' say.

'They' don't want me to forget to allow my body time to rebuild.

I forgot.

I clicked my heels together after my last Ro pill a week ago Friday and wished myself anywhere else, gave myself time over the weekend to recover, then felt much better by Wednesday, but Scott was still suspicious that my body just might quit with that last chemo round.  Me too, a bit. 

Then they released me from chemo.  I felt better on Thursday and spent some earnest time on the treadmill.

I was on my way to Oz, with the wicked witch nowhere in sight.

I even did a slow, slow, slow - what some might call laughable in most circles - jog for a quarter of a mile.  It felt good to just start getting my body back a little.  It felt good to not have to fast and take the Ro pill on Thursday.

I was done with chemo, thought Dorothy hopefully.

The remainder of Thursday morning was then spent sitting outside and cautiously sipping my first three sips of coffee in six months, and relishing the smell, the taste on my tongue.  I was sitting in the shade with Scott, but looking towards the sun.

Without sun glasses.

I was making plans for Friday - Scott and I were going to tear out a flower bed.  We might need to buy a new plant.  I have a million things I want to get done.  I was rolling.

They have warned me and warned me and warned me about wearing sun glasses.

I woke up at 4:30 the next morning with a whopper of a migraine headache.  Like lay in bed with two pillows over your head for a long time type migraine.  Like I thought the right side of my brain was caving in migraine.

I think the wicked witch caught up with me.

Then I woke up Saturday morning with my right eye a little swollen, and was short breathed on the stairs every time.  Um, yeah genius, that's what happens on day whatever heck the day number was after several treatments of Taxol and Carbo and Ro.  

I am thinking they are going to talk really slow to me the next time I am down there and enunciate each word so I hear them and comprehend and remember this time around..... They might even bring in some flash cards to help me out with it all.

Flash cards that say something like "bright light" and on the back it says "sunglasses".  Cards that say "chemo" and on the back it says "limited sun exposure".

Flash cards that say something like "hey stupid, hang your sunglasses by your special SPF-outside-hats"........

And don't forget that hopefully last carbo kiss around week three, because it won't forget you.

***

Today was a bit of a mile marker - I went to the "plant" part of Walmart, and the "plant" part of Home Depot - and then even went inside the store - just to look at summer things.

I have almost missed summer it appears - it's all on clearance.  I normally like to go inside both stores and sit and feel each outside chair for "cushiness" and determine if it would last for twenty years like our Martha Stewart Collection has that we bought in 1992.  So I thought, hey, I need to see what's new this year and I find that Walmart was selling it all at huge discounts.  Home Depot hardly had anything left.

It was a bit sobering. I had missed winter clearance, spring clearance and now summer clearance as well.  

While I was slowly walking around Home Depot outside, looking at plants that might have missed a few waterings, Heidi called on my cell phone.  We chatted a bit, then she said she wanted to plan "just a day with me", and I told her that would be awesome.

Then she said "I really miss you mom".

Missing summer clearance sales is nothing.

***

When Heidi was a senior in high school she blew off high school and did "Post Secondary Option".  She went to college and got most of her gen-eds under her belt.

She loved it.  She had worked as a waitress, had saved money, bought herself a car, made her own car payments and now she was able to drive to Wooster to Wayne College for her senior year.

She got her schedule and was pretty pleased with it - she got Fridays off.  She looked at me and said "Mom, why don't you see if you can take Friday's off and we can go places??"  We both like to comb through thrift stores or garage sales or such and find things we absolutely cannot live without and take home and love.

We both love to get into a car and see where we end up.  And eat someplace we have never been before.  And if we get lost, it's ok, there has to be something to see or do or eat or buy where we are at as well.

Plus, she has a better sense of direction than I do.  Even if lost, we would have found our way.

She loved to drive her little car everywhere.  She wanted me to come along.  I remember I wanted to so badly, but didn't think we could afford it.

There have been so many times since then I wished I would have responded differently.

Wished I would have gone with her to my Grandmother's grave in southeastern Ohio.  Wished I would have driven with her to Lake Erie and sat on the beach for the day.  Wished I would have gone and explored the neighborhoods of Columbus with her.  Wished I would have taken the weekend and gone with her to visit her sister at OU.

I wished I would have.

I had a sneaking suspicion with her gusto for adventure, that it might be one of her last summers at home.

I was mostly right.

When she transferred to OSU two years later, and got an apartment with two other friends, it was a year long lease.  And my Heidi-girl, would not be back home again.

We always think there will be more time some other time.

***

For some reason Heidi and I were driving home from somewhere in her car the summer after she graduated, and she said she had a song I might like.  She was into "vintage" music - mostly meaning music from my generation.

She played this song for me.  And I made her play it again.  And again.  And again.  The whole way on County Road 620.  The whole way to our home.

Because I knew she would be gone soon.

And this song said so well how a mum feels riding down that road with their child.

So, I am going to recover some blood cells, then I think Heidi and I have some thrift stores to get to.  And some cheesecake somewhere along the way.

And not put off any more special requests.


 









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