THE HOOLIGANS!

I think I know why feeling bad is difficult to describe. Different for everyone and different levels of severity as well. I think I've experienced feeling bad so I'll try to tell you how I felt.

Saturday was a good day. I slept well that night and Sunday morning started out good. This allowed me to go out for a bit in the roadside woods with Scott Davis and Lynn Artz to look at cool wildflowers. By mid-afternoon I was feeling tired and a little achy. I lay down to rest and then I felt what I'll call The Hooligans. Imagine lots of little ruffians armed with tiny hammers and nails and moving fast. Haha! Let's whang on her shoulders. Now let's tap on her wrist bones. Hey, you guys run down to her hips while we go beat a tune on her finger joints. Now let's all gather in her abdomen with our nails and see what we can do. Yeah! Now let's jump up and down on the tops of her feet. Yay! Let's do it again and keep moving fast. Make sure her knees are hit hard.

And so it went for hours throughout Sunday night and all day Monday into part of the night roving from one area to another. It was uncomfortable but not unbearable, although I was getting a little tired of it by Monday afternoon. Hard to sleep since I could not find a comfortable position and moved between the bed and the recliner and back again. Every time I moved from the bed, Plank the cat would take over my spot and then I'd have to move him. Finally he got tired of being shifted and went to the cat tower.

Feeling lucky about this because some folks go through much worse.

TUESDAY MORNING
Woke up with some sore abdominal muscles but The Hooligans were gone. I got up early and decided to take a little walk to stretch out my cramped knees. Really, it was more of a hobble but I was out while it was still cool and the sun was below the trees. I walked maybe a quarter mile. It's a start. I will try to do that, and a little farther, every morning I can.

Jane came down in the afternoon and we (she) moved some furniture around and got the guest room in shape for my cousins who come on Sunday. That was a relief to have that done.

Helen comes in the morning to help me (she'll probably do most of the work) finish prepping the front porch for painting next week (looking for painters). I'll be glad to have that ready too.

I really appreciate the cards and e-mails and Facebook comments. You are wonderfully supportive and it means a LOT to me.

REST AND DRINK


Each tumbler holds 2 cups so
must drink at least 6 to get
3 quarts of water. Bleah.

I rest when I get tired, but I need to keep moving - otherwise it's boring. I read some but I can't always stay focused on the page. Movies do not appeal to me right now. Besides the TV and DVD player are not hooked up.

I did a lot of laundry today (you know I have no life when laundry is the high point).

I force myself to drink and I at least make it through the second quart and sometimes into the third quart each day.

I hope I continue feeling better each day and that The Hooligans stay away for awhile.

Thunder has been rumbling overhead but nary a drop of rain. I must go water the drooping flowers now that the sun is going down even if it is still pretty warm. I hope to have something more exciting to report next time. This post is kinda dull.

FIRST CHEMO TREATMENT COMPLETED

Our little ship got underway yesterday for the first chemo treatment. My blood pressure was about off the charts so they called the doc and she ordered some meds to lower it otherwise they weren't going to give me the drugs. They told me the Benadryl would make me sleepy but it's never made me sleepy before. I didn't know what a big honkin' dose I was getting to offset any allergic reaction to the Taxol or Carboplatin. After that bag was finished then I got a anti-nausea and another bad of anti-nausea or anti-vomiting. The nurse told me one of them - don't remember which - would keep my awake at night.

Paula and I began what we'd hoped to be many games of Scrabble. Then the Benadryl began kick in and when the nutritionist stopped by I let Paula handle the questioning because I was becoming incoherent. They were right about the Benadryl. I was more than sleepy.

And then the nurse suited up to attach the bag of Taxol. Oh yeah. This made me feel safe. She also had to do this for the carbo. I'd wondered if I'd feel anything. I didn't which was good because if I had, the staff would have taken immediate action. So all that Benadryl worked. I zonked out and Paula went to lunch. I woke up and fought the Benadryl so we could finish the game. She won. I let her. Haha.

In between all the different bags was a small saline flush. I was trying to drink a lot. I've never been a big drinker, not even of beer although I sound like I am. They are asking that I drink two to three quarts of water a day to flush out my kidneys and bladder. This is tough but I am trying. I might make it to two quarts today but I have not been measuring. Anyway with all the Benadryl and drinking and other stuff, naturally I had to pee but with the Benadryl I was not too steady on my pins and had to be walked to the bathroom (dragging my pole) and turned loose. I guess I could have walked around the room had I been able, but once you are in the infusion room they frown on you leaving because of possibly bringing in germs. There are many restrooms for patients but guests have to use the bathrooms down the hall - again because of germs.

The infusion room is rather large and set up in sections or pods with a nurses' station for each. There are two nurses on duty in case of problems. Each pod has 5 or 6 reclining chairs with a side chair for a guest, and a TV. There is a curtain you can pull for privacy. We closed mine a little so our talking and questioning (Is that a real word?) would not bother anyone else. When the chair was upright my feet did not even reach the pullout footrest but my small cooler was the perfect size. I know you are shocked about that. My legs only reach the ground when I stand up. Sigh.

About halfway through the carbo I started to feel warm. I called the nurse and asked if it was hot in the room. She came right over and stopped the IV. I said it felt like a hot flash. I had no fever and the heat began to fade so she started it up again and nothing else happened. They don't take chances. I went through menopause a long time ago and now I have no reproductive organs at all but I can still have a phantom personal summer. Sheesh.

When we left just before five I was still floating on a Benadryl cloud. We made a quick stop at New Leaf and Paula took me home all the way to Woodville and she had to fight her way back to her home. It was a really long day for her. She has more than paid me back for taking her to the hospital to have her kid when Greg was out in the field.

I basically fed the critters and went to bed and no, that other drug did not keep me awake.

Lots of mildew

FIRST DAY
I woke up feeling good but a little shaky and I think that was from residual Benadryl and not eating a real meal the evening before. I made breakfast and decided as long as I felt okay I should do something productive. I decided to clean the front porch in preparation for painting. This is from spring cleaning 2014 so I am only a year behind. It pays to move. I was about 20 years behind spring and fall cleaning in my other house. Anyway, there's a lot of mildew on the porch wood, and new wood that replaced the rotting porch supports and on the siding. I went to work. Then Bob came over to do some chores so I got him started and felt a little sleepy so I laid down for a few minutes and then went back to the porch.

Steps are icky

Rail looks better

I still have more to do and I missed a few spots in places. Hope I'll feel good enough to finish the job on Sunday. If not, then next week.



Steps look much better.

BOB'S JOB


The Kitten asks, "What
fresh hell is this?" in her
best Dorothy Parker voice.

Looks like a cat door.

Install a pet door in the metal kitchen door. There is a pet door from the porch to the outside but I needed a door from inside the house to the porch. Now the cats and dogs and have access when I am work or gone up to town which is never a quick trip. The Kitten picked up on it pretty quickly. Roxy comes in through the porch pet door and stands in front of the kitchen door and barks to be let inside. Old habits die hard but I think she'll get the hang of it soon. Smokey just goes in and out and in and out. He likes to go through stuff. Plank, well, it might take him a few more tries too. Not sure if Buddy will understand. Ever.



It is! Now I can escape anytime.

PAINTING
My old house has white vinyl siding with red trim. I can't change the house color. I could change those trim color but I'm not sure I'm up for it. The previous owners left a bunch of paint. I can only hope the colors match and that the paint is not spoiled. Do you think I should leave the screen door white or paint it red too?

Repaint the screen door white or red?









CHEMO BRAIN
I have heard about this and done a little research. It seems that radiation and chemo can bring about changes in the brain. Can't remember names or the right words, etc. I was already starting that - have always been awful with names. Now I might get the enhanced version which may or may not go away after the treatments end. Good grief. So when I look at you blankly and flail the air with my hands, first tell me your name. . . . or just fill in the blank(s) until I nod. Kind of like a game of Charades.

IN CLOSING
All in all first day has not been bad. Inside I feel a little tingly but that is about the best way I can describe it. My taste is already changing so food does not have much flavor. Hence my appetite is a little off. Maybe losing a few pounds would be okay. They say I should really start to feel the effects by the third day. I still have hair. I think I'll get a much shorter cut at the end of the week. Don't expect a full face photo either. I got a little criticism on my selfie for only showing a portion. Hey, didn't that guy who started the whole selfie thing miss his face completely???

Just taking one day at a time for now while the seas are calm. At least the sea is not quite as ambiguous as it was a few weeks back.








 

FEELIN' AW-RIGHT!
One more day to feel pretty good. There were several days after the surgery when I thought I'd never feel normal again.

Yes, I hear the chorus of voices - "Gail, you've never been normal!". Well, you know what I mean. Having enough energy to walk from the bed to the kitchen and back. That was a major effort. Eating was difficult because I had no appetite. And then that infection hit and I went back to the hospital again. I won't say I'm back to full strength but I am better than I was even a week ago.

My antibiotic bottle tree
for second hospital stay.

I confess my brain consciously or unconsciously can't think of much else but Friday morning and what/how I'll feel when those chemicals begin flowing in my veins. Somehow the thought of dying has never been part of the picture. I think because I'm not afraid of dying. I am apprehensive about being able to work, drive, eat, take care of the animals, write these words . . . ..

Plank napping

I've talked to other people who have gone through cancer treatment. They've given me a little insight but really, I don't want to know. We're all different. We all react differently. It's our cancer and most of what happens to us inside our bodies and our heads is not shared. I'll probably be the same way when this is over.

EDWARD SCISSORHANDS
I had robotic surgery meaning that I have five 1/2 inch incisions scattered across my abdomen instead of a long cut. Not much scarring - too bad I don't have a bikini body anymore. Anyway, those slender little robotic arms have a light and little knives on the end. With the doctor's help, those little knives cut everything loose. I imagine a tiny Edward Scissorhands dancing around my belly and that brings a picture of Johnny Depp to mind. SWOON.

PET ADVICE

Eat often says The Kitten.

I gave blood this morning and it looks like I'm okay to get the drugs on Friday. I think I'm going in with solid numbers which is good because infection is a major concern for the staff. Chemo training went well. I know more about what to expect. Fatigue seems to be the main issue. The drugs will kill cells that divide rapidly as cancer cells do, but other good cells that divide rapidly - hair follicles, intestinal tract, and red and white blood cells and platelets - will also be killed. Tiredness is mainly caused by my body's need to use energy to replace those good cells. I was so tired when I came home from the cancer center that I took a three-hour nap.

Roxy says nap oftener.

I think I'll follow advice from the pets - eat, nap, eat, nap, eat, nap. And drink a lot. Drink a lot to flush the drugs from my system. "Why not just give me less drugs?" I asked. They really didn't have an answer for that.

Plank says eat when not sleeping.

I almost backed out when they said that my hair might come in a different color. Okay, I'll take being bald for a few months. And I'll learn to live with wavy hair but a different color? That's a deal breaker. This hair represents all my Irish ancestry and it's gotta come back the same color. They seemed shocked when I told them that no dye has ever touched my hair.

SETTING SAIL FOR REAL
The ship unfurls her sails on Friday morning. Still lots of unknowns ahead and probably some rough seas (maybe I'll meet Captain Jack Sparrow!), but I expect mostly smooth sailing because I'm on the right course. I'm just getting back my desire for morning coffee. Will I lose it again? Will I really want to eat celery? Will I not want to eat chocolate? I despise celery. I love chocolate. I'm not stocking up on too much food for me since I don't know what or how much I'll want to eat. They don't want me to lose too much weight.


Rest when not eating, Plank advises.


In any case I am anxious to get underway so I can be finished with it and really work on getting back to what passes for normal for me! I'll try to drink a lot (but not alcohol), eat when I can, stay away from crowds and sick people and negative people(!), and rest whenever I feel tired. Just like Plank.

And now I'm heading for bed. Many things to do tomorrow. The sleeper sofa arrives in the morning so my cousins will have a place to rest (after eating of course) and helping me finish up painting and picture hanging, etc.

I'll see  you for the next blog after the first treatment! Thanks for being part of the crew!






THE HAIR THING

The FAQ sheets on taxol and carboplatin - the two drugs I'll be getting - indicate that I'll lose my hair. Some people maintain that not everyone loses their hair. I'm betting that I will since the majority of people do. It will grow back and will probably be curly or wavy anyway.

Me with longish hair
mid-April

Is this my mother haunting me?

Here's the first cut. Probably
the only selfie you'll ever see
of me. The trees I'm standing
in front of are longleaf pines on
the back of my property. They
look like they are hugging.

She always wanted a curly headed little girl. I think she thought it would make me into a Shirley Temple-sweet child. Wrong. I can't count the hours I spent hunched over the sink while she poured chemicals from Toni Home Permanents over my tightly wound hair. I can still smell that stink (remember Dianne?). But my hair stubbornly refused to curl much. Ha.

As long as it comes back the same color - the result of eons of Irish genes - I guess I'll take curly/wavy hair.

If your hair is curly when you start chemo - will it come in straight? Wouldn't that be a kick?

CLEANING!
Helen and Ann came down yesterday afternoon and cleaned all the mildew and algae off the back of the house!

I know it is hard to see because of the shadows, but the siding
was an icky green and even brown in places.

Look how clean and white the back of the
house looks after Helen and Ann worked
their magic! They did a great job. Even Plank (cat)
and Roxy (dog) approve.













Chemo begins a week from today. Using this time to stock up on things I might need. Dog and cat food and treats first! I go for chemo treatment training on Wednesday. For now it seems surreal - like a mirage on the horizon. It will be real soon enough.

This is Plank on a plank. I picked him
up on Old Plank Road about 2 years
ago. I guess someone threw him out
in the woods. He was already
neutered. He is a sweet cat with a tiny
meow and a almost inaudible purr.
Unlike Pasquale (who is still missing)
who had a raspy grouchy meow and
a purr that could be heard in
the next room.

In a perverse way, I'm fascinated that I'll be getting taxol. Paclitaxel was discovered in 1962 as a result of a U.S. National Cancer Institute-funded screening program. I think, but I'm not certain, that researchers might have looked at our own Florida yew (Taxus floridana), found only in a small area east of the Apalachicola River between Bristol and Chattahoochee, Florida, but the compound was not suitable. Then they looked to the bark of the Pacific yew (Taxus brevifolia). The drug can now be chemically produced without taking bark from living trees but this should be a powerful reminder how important plants are for our continued existence.

The majority of people have no idea that plants provided our first medications and poisons. The seeds and leaves of the Florida yew are poisonous to humans.

Knowledge is power and there are pages and pages on the internet with information about the two drugs. I think I don't need to study them too much and you shouldn't either. Sometimes too much knowledge can scare the bejeebers out of you.

I think that's it for now. I'll be working at the refuge this weekend. If you are nearby you should come to our First Sunday at the Refuge presentation - a stunning video by Sammy Tedder titled Local Waters: Through the Seasons. A great way to spend a cool afternoon. Since this is a video I'm thinkin' there will be popcorn and soda. . . . . .

Gail



DON'T BE SAD - CHANGES IN ATTITUDES - BUT NOT LATITUDES

I don't expect all of you to read these notes. Some of you have said that they make you too sad. You hate that I have to go through this. Trust me - none of you hate it more than I do but I need to do this if I want to see my little longleafs grow! It's okay if you choose not to read about this experience but I would not be seeking treatment if I didn't think I had a good chance to be annoying a few more years.

FIRST naturally regenerated longleaf
in my yard this spring. It's about
twice that size now.

Which leads me to our expiration date. We all know we have one. We just don't know when it is. So we go sailing through life with little thought to The End. Our pets die. Our parents die. Famous people die. Our friends die. Our co-workers die. People around us die all the time but they die - not us. But then you get a disease and all of a sudden, "Whoa! Maybe I should not put off taking that trip until I've saved more money. Maybe I should do it now."

That's one attitude change for me. I'm thinking about things I'd like to do besides get the living room painted. I guess that is the bucket list but that term irks me so I'm not going to use it again.

I want to see the west - the mountains, the forests, the deserts. I want to go to Ohio where my father came from and climb Tener Mountain (I'm pretty sure that at least part of it must be on land one of my ancestors owned since my maiden name is Tener) and explore old cemeteries and find the resting places of my ancestors in Ohio and Georgia and North Carolina. I want to take a cruise on a paddlewheeler. I want to see my little bit of sandhill come back to vibrant life.

I've gone through more than six decades in boringly good health. The worst thing that's happened to me was a broken arm in the fourth grade from speeding too fast on my bicycle around a turn. Aside from a head cold or flu I've never been really sick. I never had surgery until April. I've never faced a serious or even semi-serious illness myself even though others around me have.

I found this pretty little aster growing along
the dirt road behind my house this evening.

Now I have a better understanding of how they might feel. How they cope with living in pain or failing health or uncertainty. In this way, cancer is making me a better person just like working in a restaurant and bar while in college made me a better customer - don't leave the table a mess, don't be too loud, don't be rude to the person who is serving. etc. However, if they aren't doing a good job it's okay to let them know. I thought I was a compassionate person but now I see that I can be more caring and empathetic.

There is a lesson to be learned here folks.

I'm learning that many people want to help me and I am learning to accept help because that has always been difficult for me. My friends are the best people! Even those of you who live far away. I know you are sending me good vibes and I am grateful for that.

This is where the pavement ends
and the dirt begins on the way to
my house. I was a few minutes too late
to catch the really striking color of the
sunset. But I liked the juxtaposition
of the pretty clouds and the sign -
Pavement Ends.

This post has not been very humorous so I have to close with a smart ass remark. When I was in college the legal drinking age in Florida was 21. My friends and I celebrated my 21st birthday in a bar where I had been imbibing on a fake ID for a year. On the cake (and I have no idea how much they paid the baker to actually put this on the cake) was a fist shooting a bird and my still favorite phrase, "Fuck 'em if they can't take a joke." Even the bartender laughed.

The voyage is just beginning. There will be some rough seas ahead, after all Hurricane Season just began (and will end about the time my treatments are finished. But there will be good wind and smooth water too. Don't despair because I sure as hell ain't a gonna.