CALM SHORE AHEAD (written in late October but not published until December 27, 2015)

One more chemo treatment to go. The doc says I'm doing great and should be around to annoy people for some years to come.

Remember the way this treatment regimen was set up - three chemo infusions, each three weeks apart with a few weeks off before three radiation treatments, once a week for three weeks, a few more weeks off, and another three chemo infusions, each three weeks apart. Essentially this whole out-of-control spin began last September when I first experienced the symptoms that I ignored for nearly six months. Then there was the surgery in April and subsequent infection and then the cancer treatment which began in June and will be over with the last infusion on November 4. Well, not really over because I'll be going in for checkups every few months for five years. I know it is going to take several months to recover from all the insults my body has endured from the toxic chemicals and radiation. I want to go to Texas in early 2016!

Yesterday was the second of the second group of chemo infusions. So far I seem to be handling the second group much better than the first group of infusions. My hair started to grow back in between chemos but it's coming out again now. You can rub my head and hair flies off like a shedding dog.

I expect I will have to wear a hat this winter to keep my head warm and I don't expect to have anything that resembles real hair until next year.

OTHER FALL OUT (HAHA)
Taste: Since my taste is impaired I can't really tell how salty food is so I've stopped adding additional salt to food. My blood pressure is way down which makes the docs happy. I can only hope that when (if) my taste returns I can keep from adding more salt.

Medications: My mother hated taking pills and I do too. I wonder if this is learned behavior or genetic?

Neuropathy is still with me although I am taking a drug to combat it. It isn't as bad but I still feel sand in my shoes all of the time. My fingers only have a little tingling but my right thumb is pretty bad. Sometimes I drop things. I can't button a shirt without looking at what I'm doing. It sometimes takes several tries to pick up something small. With time, after all the chemo is over, the feeling might return. Or not. I sure hope it does. Although if I had to choose between cancer and neuropathy, I'd take the latter.

I swore I would never read anything but a real book but holding a real book is hard on my hand and it's much easier to read an e-book on my iPad. ugh.

Still taking Zoloft for depression and will be happy to take this pill for the rest of my life if it helps keep my inner demons at bay.

Appetite: I'm hungry all the time because of the steroids. I've gained more than 10 pounds (way more). This makes the doctors happy and Gail unhappy. I can't wait be done with the treatments so I can start to lose some weight! I've been addicted to spaghetti for the past three weeks and can eat it for every meal. I make my own sauce in the crock pot and freeze portions. For the first time I am glad I have a microwave oven but try not to use it much. I managed to live without one for more than 60 years.

Skin: Chemo seems to have added some lumps and spots and my skin is awfully dry even though I use lotion every day. It was getting better in between the chemo groups so I hope it will improve when the treatments are finished.

Eyes: Eyesight has deteriorated a little. Doc says to wait until treatment is over before going for new glasses just in case the chemo has had an effect.

Fatigue: Some days I have a lot of energy and gogogo and then have to slow down for a day or two. I just can't really tell from day to day just how I'll feel so it is still hard to plan and commit to activities.

2015: Is my almost worst year and the almost best year. The worst year, hands down, was 2007 when my mother's health declined and taking care of her in the months before she died in late December. That might also be the best year because there is no greater job a person can do than to care for a parent or other loved one who is dying.

FALL ON THE SAND ROAD

Many flowers blooming! Most are small and all are native. Even though the former owners  mowed everything in favor of GRASS (!) I am have not mowed since I moved in. I may mow some in early spring to mimic fire. Here are just a few flowers.

Of course at the time of this writing very little is blooming. Everything has gone to seed and more flowers will come next fall. All of the flowers are small and not so showy. A visitor would have to walk about the "yard" to appreciate the abundance of life.


I thought I had placing photos down but the skill seems to have faded in the weeks I've been dormant.

I'm now al most eight weeks past the last chemo treatment. My hair is coming back but my energy and stamina are slow to return. I'm able to work more but there are many things I want to do other than work.

I've heard that I'm supposed to feel differently about the future now. I'm supposed to NEED to do the things I've put off. Well, I have many books to read. I can actually hold a real book now as long as I'm sitting up and not laying down. I would like to go out west a few more times - cross-country car trips! My favorite! I'd like to explore some places my ancestors lived so I can learn more about where I came from. I'd like to volunteer at the Cancer Center, specifically with people who are having their first treatment. I know I was terrified and I expect others are too. It doesn't matter how much you research and read and hear from other people. I admit to wanting to bolt the first time. And I think I have a few more books to write so I really need to work on that. My bucket list is pretty simple, and, I guess, vague.

Other than the lingering fatigue, I'm feeling pretty good. The doctors think I'm doing okay but I think the real test will come in March when I go see them again. I can't admit that I'm a cancer survivor but I can say I survived cancer treatment so far. At least so far. As I told the doctor, I now have the fear that I am no longer protected by the toxins. As rotten as I felt because of those drugs, at least I thought they kept the cancer at bay. The doc said it was natural to feel that way. I try to think of it less as the days move forward.

The biggest thing I have to do is restore this little bit of sandhill. Most of the understory plants are here. A lot of oaks and slash pines need to go. Many longleaf pines need to be planted yet. I need to see them grow. . . . .

My friends and not a few strangers have gotten me thus far. Thank you. I can't say enough praises about the staff of the TMH Cancer Center. Many people pulled for me - call it prayer, good vibes, or special thoughts. Many different religions and no religions. Part of what bound us is, and will continue to bind us, nature and our appreciation for it, and the fact that we are human and we are all in this together no matter what the differences. There have been a few comments from people I've never met who read this blog because they've had cancer or known someone who has gone through this and it had given them a better understanding of what it is like. For those who have had cancer they are glad that I'm telling what it is like to live though the treatment and afterward. I might live alone, but I am surrounded by a lot of caring people. I might not have gotten through this on my own if not for those folks.

I have met so many people who have cancer. They would see my hairless head and engage me in conversation. We shared notes so to speak. Once all my hair comes back I won't have that advantage but I didn't mind talking about it. I think it should be talked about more because this disease is among us. Those who have it need our support. Cancer is not contagious but it isn't always obvious. Just caring, I think, is the most wonderful thing we can do for each other.

WHYWHYWHY? Well, here's why.

Why haven't you posted anything lately? In the spirit of being an open book about what it's like to live with cancer - and it's not the same for everyone - but for me the past two months have been an emotional and physical roller coaster ride. Oh, wait. That's not in keeping with the voyage theme, so make that really rough storm seas.

I just didn't have the energy or desire to write anything. I hit a wall. I was tired of being tired, bald, feeling crappy, feeling like the treatment would never end, feeling that I would never feel normal again, tired of food having no taste, tired of the weird vibrations and pain and lack of feeling in my fingers and toes, tired of not being able to get up and go. Just tired. I was depressed and I wanted to stop the treatments and try to feel normal for a few months and then just die. Yeah, I know you don't want to hear this.

I dreaded the radiation treatments and it took me a long time to figure out why. I told my radiation oncologist. Actually, I railed at him, poor man, told him I did not want to live and never have, etc., etc., etc. He is fortunately an empathic man and spent some time talking with me and part of my support group who were with me. He and I decided an anti-depressant was called for but he did not want to prescribe it. My chemo oncologist is also a psychiatrist and he felt she would be better qualified. So just knowing that relief was coming was, well, a relief. But I was still angry and resistant to radiation.

It wasn't until after the first treatment that I figured it out. My father died of lung cancer in 1984. They cracked open his chest and decided that the only thing they could do was try to shrink the tumors with radiation. That didn't really work and the last months of his life were not fun.

Part of me knows that cancer treatment has progressed light years from what it was in 1984. And I know many people who have had cancer and are still around. But I also have friends and family who are not around, but the person who occupied my thoughts most of all was my father. I was angry because he died too soon and angry because treatment did not help him. Once I admitted that to the doctor, we both understood much better. But I'm still taking my little blue happy pills.

Just so you know, inserting the applicator is a bit uncomfortable but the radiation itself does not hurt. One more radiation treatment next Wednesday and then back on chemo again for the fall. Done with that now and hated every moment although, per usual, the technicians were caring and superb.

MORE PLEASANT SURROUNDINGS
My cousins, Dianne and her daughter Sherri, came down and now my living room is gorgeous. Most mornings I sit on the front porch (that Dianne and husband Joe painted on their previous visit) with my coffee and watch the birds while Plank and The Kitten wrestle with each other.

Ever the planner and organizer, Dianne also whirl-winded through my jumbled, messy back porch and rearranged and organized everything. My job is to keep it that way. So now I walk into the house and put stuff down instead of on the porch. Dianne's reward for all her work was dinner at Wakulla Springs (we were too late for a boat ride) and then we went to the St. Marks Lighthouse for the sunset. Yeah. She deserves more than that I think.

BACK ON CHEMO
I have to say that the little blue pills are doing their job and I'm grateful for that. Wednesday, September 23 saw me in the chemo infusion lab for my chemically induced nap. Steroids are one of the pre-meds to give a couple of feel good days before fatigue hits. I expect to be one with the mattress for the weekend. I actually looked forward to the chemo because I am nearing the end of treatment. The long break from chemo helped me realized that I should be able to feel normal again but it will take a few months after the last treatment (expected to be November 4).

Then we start the surveillance phase. Well, that's what they call it. I'll go back for checkups every three months for the chemo doc and every six months for the radiation doc for a time. If all is going okay the checkups will be less frequent until I hit the magic five year mark.

HAIR AGAIN
Well, it's starting to grow back but will probably disappear as the chemo works its bald magic. The one good thing is that I have not had to shave my legs in several months. If the leg hair does not come back I won't be unhappy.

I think someone should start a pool on what color and if my head hair will come back curly or straight.

AN EPIDEMIC
When I do get out and about many women come up and tell me that they have had cancer and that my hair will come back and I will be okay again. Not that I get out all that much but in Publix or having lunch with friends or at work when I am able to go, people share their story. I think more people should share mostly because it will make all of us realize that cancer affects many lives. All I can tell you is pay attention to your body. When you think something is wrong check it out because something probably is wrong.

Everyone knows I don't go for the doctor. In fact, it has been years since I went to the doctor. (But I'm making up for all that lost time now!) It's partly my upbringing and partly because I just don't like going to the doctor for no good reason. But I knew something was wrong and I ignored it for nearly six months.

It seems like cancer is becoming an epidemic. In your life you will probably lose at least one person you love to cancer and you will know others who will have cancer. Luckily, understanding the disease and treating the disease have progressed and will continue to progress. In the end, though no doctor, medicine, or lifestyle can cure death. I am so fortunate to have the oncologists at the TMH Cancer Center on my side. They take the time to listen and understand, console, explain, and HELP me get through this.

And I am most grateful for the good friends who stop by, call to check on me, keep me in their thoughts, and are more than eager to help in any way they can. I started this note a couple of weeks ago and I had to get it finished this morning before my energy runs out. I think of you all as much as you thin of me if not more!

I think this is all I have for now. I'll keep you posted on how I'm doing with the last part of treatment (two more to go!). I plan to come out okay on the other side.

BED REST IS OVER-RATED

Watching birds with The Kitten

By July 3 fatigue was setting in. Not so much that I was really tired but I was becoming short of breath. I started Ibuprofen Friday evening and kept it up as needed. Basically I slept until the next Friday. But I was ahead of the bad pain and only had a few aches. I'm calling this the flat-on-your-back-unable-to-rise phase. I woke in the morning knowing I was hungry and needed to eat. First I had to summon the energy to get up and go to the kitchen holding lightly to the furniture and breathing hard as I slowly went. One morning I scrambled two eggs and had to go back to bed to rest before I had the energy to eat. Some mornings I was able to sit on the porch for a little bit before going back to bed.

This fatigue thing is no fun. It is difficult to accept. I know I need to get up and do things but I have not the stamina and sometimes I can't even call up the strength to think of the things I should do. I am learning to accept this part and keep my spirits up (what would I do without Facebook, my window to the world?). Slapping me in bed is how the body reacts to diverting all the energy it can to repairing damage and replacing cells.

Saturday was not a happy night. Lots of moving from the bed to the recliner and back again, finally falling asleep in the chair. I woke Sunday morning to Smokey and Buddy perched on the bed staring at me. I had the phone near and it was just too cute a photo to miss.

I could move around more by July 8, but not able to stay up for long. Took a shower, did laundry, and changed the sheets on Saturday. Went to Publix today - July 12 - the first time out of the house and driving since July 2. Saving gas and wear and tear on my car!

I think when I get to feeling normal again, probably early 2016, I  won't ever think I'm so tired that I want to sleep for days. I've done that and it ain't much fun.

WHILING AWAY THE HOURS
I've almost mastered downloading audio books from the library. I occasionally hit the wrong button which messes everything up. For now I'm listening to books I've already read. What's the point you ask? Now I can listen in chronological order and if I fall asleep during the reading, it's okay. They do help me to fall asleep.

I thought about the many cross-country trips I took back in the 1990s in my van. Camping and seeing friends and beautiful places. Hiking in the desert and mountains and forests. Visiting museums. I have many more places to see. 2016 might be my travel year.

LET ME TELL YOU ABOUT MY OPOSSUMS!
I have a lot of ticks at my place. I hate ticks but I know they are part of the food web so I only go after them when they are on me or a pet. When I learned that opossums are great tick eradicators I contacted Florida Wild Mammal for some opossums. It happened that they had some ready for a soft release and all I needed was a cage. Ha. Well, Scott and Aimee built a gorgeous cage over several days. We call it the 'Possum Palace". The opossums are not quite half grown and will be ready to be set free tomorrow. Setting them free is simply opening the door and hope they disperse to the woods around my house and hoover up little things in the leaf litter.

Although opossums look rather scruffy and scary, they are pretty gentle. They are clean and while grooming if they find a tick, they eat it. Not many critters do that. They just look that way in hopes that you'll leave them along. Learn more here http://www.opossum.org/facts.htm.

WONDER WOMAN PHASE

I think today I'm entering the Wonder Woman Phase. At least is seems that way compared to the past 10 days. I hope this feeling lasts until the next treatment on July 22. Each time I'm better prepared to accept and deal with my body's reaction to the chemo drugs. My fingers and toes are more tingly so I can't always feel what I'm trying to pick up. If I wear fuzzy socks at night my feet stay warm and don't ache but my toes are still numb. I don't have many taste buds left so sometimes food does not appeal even though I am hungry. Sometimes I get cravings! Today's craving was apple pie. I can almost always get down a baked potato or eggs and now I have a freezer well-stocked with Amy's frozen food. The Publix on Crawfordville Highway has a great selection, better than any other Publix I've seen in Tallahassee. Sometimes what I crave today may not be what I want tomorrow.  I'm not craving Oreos and Snickers right now but I'm keeping my stash just in case. Not really having the energy to prepare fresh food now and having erratic dietary wants means that the frozen food is a less expensive choice in the long run. I also bought Campbell's vegetarian vegetable and cream of mushroom soup because they are the comfort food of my childhood and I can dredge up that memory of how they taste and how much I loved that warm soup from a can.

And now I must go feed my opossums! I started with four but one seems to have squeezed out of the small openings by the roof. I think there are three left but I usually only see two at the time. Aren't they just the cutest little things? Well, I think so.

ROUGH WATERS
Our little boat hit some squalls but did not capsize. Had a nice dinner at Bella Bella with family on Thursday June 18. Boy Howdy, that Eggplant sure tasted good but tomato sauce is definitely off my food list for the next few months. Agony that night! I felt like hot coals were pouring through my intestines and burning a hole in my stomach. No rest and a lot of pain.

A bit better in the morning but called the Cancer Center for advice. Tums, it appears would be the answer. Surely everyone in America has them handy, right? For 66 years and some odd months I have no need of an antacid that I can remember. Cast iron stomach. Able to eat anything, except spoiled food, but you know, you throw up and move on. Tummy is maybe a little tender but take it easy until all better again.

I now have a container of Tums. O, joy.

The weekend was not very productive. I rested a lot and didn't eat much. Robin came and got me on Saturday and took me to town for grocery shopping and another haircut. My hair was still firmly attached but soon, I knew, it would begin coming out.



Dianne and me on the front porch. Can you see
the family resemblance?

Tired on Sunday and managed (just barely) to get ready for my cousin Dianne and her husband Joe who arrived Sunday afternoon with tools and skills to finish some projects. My wonderful cousins got so much done while they were here - probably a good thing I was not in their way!



Dianne and Joe on the freshly painted front porch. The front
door looks so much larger with the screened door painted red too.



Joe only meant to add a top rail but he
ended up redoing the entire deck railing.
Looks fabulous Dahling!

White cabinets and hood painted
with chalk board paint. Lovely.

Fatigue continued into Monday, extremely sluggish and not much appetite. The evening brought on a whole new pain. All night constant aching muscles and bones. Not moving like The Hooligans, just a steady all over aching. Again, no rest. Called the Cancer Center on Monday. Tylenol should do the trick. No, I don't have Tylenol - Advil, aspirin, Aleve, but no Tylenol. Luckily Dianne had to run out for supplies so she brought back Tylenol. Tuesday pretty much a bust.

Don't come to my house expecting first aid. The band aids are probably 20 years old.


Sada ready for the whack
 job. No more Woody
Woodpecker look

By Wednesday recovery began. Appetite coming back. Time to wash my hair so I do the tug test. Whoops! A couple of dozen strands come out. I think I have been waiting and dreading this day for some weeks. How will I react? How will I feel with no hair? How will other people look at me? Can I learn to tie a scarf? (no) Will I look like Rick Scott?

Helen comes down to take me to town for the big shave. I think I'm ready but who knows? I might burst into tears. I don't but it's a tense moment. I can't watch the actual shaving. I was told my scalp would be sensitive since it's been protected by hair for lo, these many years, but it isn't. Oddly there is still stubble so now I have Velcro head. Scarves and hats stick when removed. In any case, I am actually more comfortable bald although I will wear a hat if I'm out in the sun for very long.

GOOD REASONS TO BE BALD
Bald is beautiful.
Save time and money - hair products, hair cuts, washing hair, fussing with hair (much to my mother's dismay I really did not do much of that once I got out of high school)
People jump to help a bald woman because they know it means cancer. Most of the time I can handle stuff but every now and then I need the help.

MY BODY IS LIKE A CAR WITH A BROKEN GAS GUAGE
Chemo therapy is more than some pain and fatigue. There are all sorts of other mixed signals along the way. For instance my balance is a little off but I haven't fallen yet. My conversations wander all over the place even more than usual and sometimes I just can't think of words quickly enough.

Did you ever have a car or know someone who had a car with a broken gas gauge? You had to remember how many miles you could get from a tank of gas and remember to reset the gauge after getting gas. Well, my bladder no longer sends a signal that it's full so I have to judge by the amount of water I drink. Haha. This adventure is such fun. You just have to roll with it and laugh.

SECOND CHEMO ON WEDNESDAY JULY 1
We had some pretty bad storms up in Tallahassee but my power went out about 6:30 on Tuesday evening, June 30. It wasn't on by the time I went to bed and I was worried that without the alarm clock I might oversleep. I sent a text to Robin to call me early and she did which was good because the power was still off in the morning. With a gas stove at least I could heat water for coffee.

Now you can ask, "Gail, don't you have an alarm on your phone?" "Yes, but I don't know how to use it and besides if I can sleep through the phone ringing surely I could sleep through an alarm, but when the BBC goes off on the radio and I have to cross the room to turn it off, I'm UP."

Helen was early to get me and we arrived at the Cancer Center on time. Lab work, see the doc, and chemo all on the same day. I learned that the drugs are really only in my system for the first 2 days or so and the rest of the time the pain and fatigue are my body's response to the damage. When I'm tired my appetite goes down but I still need to try and eat something and I must rest. This is not a fatigue to push through this is a need to let my body work on making new cells. I think I have a better handle on how to handle the pain - ibuprofen for joint pain and Tylenol for skeletal/muscular pain and take as soon as the inkling of pain begins to get ahead of the pain. The doc, I think, is pleased so far but it's early in the game. My blood pressure was much lower so no blood pressure medicine. I'm cleared for treatment so Helen and I lug our stuff over to the infusion room.

I'm not real sure why people want to get up super early to drive down to Woodville to get me and then spend the better part of their day watching me sleep but I'm glad for them!

Taxol!

We check in, and wait a few minutes before we are called back. We get settled in and wait. They do not order any meds until I am cleared for treatment but the pharmacy is pretty fast and soon the anti nausea meds are dripping. This time lunch comes just a bit before the Benadryl starts so I get about a third of the salad down before I hand the container to Helen and say, "I can't eat anymore because I can't lift the fork." She takes it and I drop off. She goes out to run errands and eat lunch. I wake up to pee about the time she came back. How was lunch? She tells me and I'm gone again and don't wake up until they tell me I'm done and they start unhooking me. She was amazed at how fast I went down after the Benadryl started. Yep, I'm a druggie.

Scott called from my house to say that the power is still not on. I ask Helen to stop for ice on the way home in case I can salvage anything from the fridge.

Helen and I pack stuff in the coolers with the ice and she leaves only to call in few minutes to say that the utility trucks are out and I should have power soon. Sure enough it's back on in an hour. I'm too tired to empty the coolers so leave them for morning.

Now it's Thursday, the day after treatment. I feel pretty good although a little tired. I take care of the coolers and do some laundry and go to town to have lunch with Linda at the Pitaria (YUM!). I went to a friend's house for a lie down before hitting Publix.

If all goes like last time Friday night should be the return of The Hooligans but I am ready this time - at least I hope I am.

I am trying new technology - downloading audio books from the library. When I'm tired and don't feel like holding a real book at least I can listen to one.

I hope you all have a safe and food-filled 4th of July. I think I'm going to be a little under the weather but it'll pass. At least I do not resemble Rick Scott at all.

Fuck cancer.

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.

Charting a Course and How You Can Help Me.

Everyone is different. Everyone reacts to cancer treatment differently even if they get the same drugs. I do not mean to make light of cancer. It's a damned serious disease and the reaction of most folks (I think) when they get the diagnosis is that it scares the shit out of them. And then they have to come to terms with it and deal with what to do and how to do it. I'm looking for humor because humor has always gotten me through.

I'm still looking pretty good AND I feel great right now. No one would suspect I have cancer. I still tire easily on some days - still getting over the surgery and getting the drugs out of my system and probably putting some energy into trying to keep cancer at bay. And I'm not a spring chicken.

Last week I met with the doctors who are planning my treatment. I'll begin chemo on Friday June 12. Hoping I'll run true to their prediction that I won't start to feel "bad" until the third day so I will be able to work at the refuge on the weekend. Treatments are spaced over nine weeks so that is a treatment every three weeks. About a month after that I'll start a radiation treatment - one a week for three weeks. Then another nine weeks of chemo - once every three weeks. It seems like such a long time for someone committed to instant gratification. I think that works out to a little over six months - I'm supposed to lose my hair so that translates to saving around $75 in haircut costs. There is a silver lining . . . . . and maybe I'll finally learn patience (doubtful).

The CA-125 test (http://en.wikipedia.org/wiki/CA-125) they did last week showed 10.4 and that falls well within the normal range (0-35). A higher number would indicate a more likely presence of cancer. So I guess those little serous cells (do an internet search if you want to know more about those nasty little suckers) are still floating around looking for a place to set up a tumor shop. Chemo will do a seek and destroy on them. Unfortunately, chemo is not that selective and will kill some other cells too.

I had a discussion about depression with one doctor. I get depressed. Not difficult to imagine when you realize how passionately I care about the environment. Wildlife squashed on the road. Forests destroyed. Wetlands dredged or filled. Pollution. Wildlife indiscriminately killed. And sloppy grammar. So, yeah - that shit depresses the crap out of me. The doctor advised making a list of positive thoughts to use as my mantra when I have a negative thought. Here is my first one, "Rick Scott will die one day."

Okay, I don't really wish him dead but I wish he would change his attitude. I don't think that's going to happen. Would we be in better or worse shape if he won a senate seat? I shudder to think. Okay, that's a negative thought. Ohhmmmmmm Rick Scott will die one day.

And this brings me to the "bad" part. I've never really asked what that means. Really tired? I'm a good sleeper. Achy? Hydration is recommended to help with that - sadly beer is not on the list. Nauseous? Have to deal with it. I'll be sensitive to sunlight - must invest in a protective shirt or two. Sunscreen is recommended but that stuff makes my skin crawl so probably not. I know I'm weird that way. I don't like the way fake fabrics, sunscreen, and insect repellent make my skin feel. My immune system will be impaired so it you are sick stay away from me XXXXX. Luckily, TMH Cancer Center is open to some alternative, natural ways to alleviate the side effects.

So for someone who has avoided taking chemicals and turns down the X-rays from the dentist, my body is about to be flooded with toxic chemicals and radiation. Can you laugh at the irony?

HAHA - didn't see this coming!
So the radiation doctor and I had a little chat on Friday. My treatment will be done vaginally. (Oh, ICK!) Honestly, I've been poked and prodded so much lately that I'll soon lose my Re-Certified Virgin status. No pride or modesty left. I could probably walk through the capitol naked without a second thought.

So here's the really icky part. Radiation will make my vagina shrink. That is not good because then they can't insert the instrument and also they can't look to see how things are going and if a tumor is growing. "We'll give you a vaginal dilator and teach you how to use it." We look each other in the eye for a moment. "How about I just have sex?" I ask. "Sure, you can do that." So, fellas - Volunteers anyone??? - OMG! so totally KIDDING about that! I have not been able to embarrass this doctor yet but I'm not giving up.

How You Can Help Me Now
So many of you have offered to help - food, rides to chemo (doc says I should be able to take myself to and fro for radiation), clean my house, feed the pets, be my walking buddy, and more. Believe me you are all on my list - I just don't know at this point how I'll feel and what I'll need.

However, if you want to help me with a project before I begin treatment - I could use you. If you don't know, I sold my home in Tallahassee and moved to the country near Woodville. My old house has a small front porch and a large back porch. Both have floors are in serious need of pressure washing and paint. Actually the vinyl siding needs pressure washing too. I have a pressure washer but it's electric and might not be strong enough for the job.

I have paint. I've wanted to take care of this stuff for months, but it's a little daunting for one person. So, I need help with moving stuff in order to do the pressure washing and the painting - wouldn't you know that rain is finally predicted for the coming week!?!

Well, if you are up for painting, moving furniture, pressure washing or anything like that let me know. Oh, I also need an old couch and loveseat to go away. Panhandle Pizza and Ace Hardware are just a few miles away . . . . I know I can still do stuff right now and I'm happy to feed and hydrate you too.

Let me know if and when you can help and we'll have a party or three. I don't expect to get it all done in one day so there are opportunities for all.

I took the pictures below at the TMH Cancer Center on Friday afternoon - a salt bush and a wax myrtle growing in the parking lot retaining wall. You have to admire the tenacity of a seed to grow even in adverse conditions.

You are all my super support group! Gail

So here is what I want to tell you. I have cancer. It's a disease and not necessarily a death sentence. Frankly, I'd rather die in my sleep and the doctors tell me that's still an option. In the end, cancer might not be what kills me. But no one gets out alive and that is the irony. As soon as the sperm hits the egg we begin to live and we begin to die. We never know how long we have and life always blindsides us with good and bad stuff. Ya never know.

Understand that I am still me - irreverent, angry at injustice on nearly ever level, profane, pissed that many people DON'T do the right thing (or in my cases the left thing), and, I think, I still have the ability to laugh at myself most of the time. So treat me normal. Don't be afraid to talk to me. Believe me I will talk to you and probably tell you more than you want to know. It's okay to tell me to shut up.

So my uterus went bad and it came out, with associated parts, on April 20, 2015. On April 22 I received the news that there was a malignant tumor inside and that I would be referred to a radiation oncologist. Well, I kinda thought that cancer was the root of my problems so I was not surprised.

My first reaction was to do nothing and just let cancer take me away - like the old Calgon Bath Oil Beads commercial. But my friends won't let me do that. I knew it was a mistake to tell them.

The good news was that the tumor was inside the uterus and had not escaped. Well, okay. I guess this guy is going to tell me, "Oh yeah, it was fully contained so come back in 6 months and well take a another look."

Not. I've been becalmed on a sea of ambiguity for a few weeks, but now I'm seeing the doctors and I believe the wind is picking up and we're charting a course for a bountiful shore and not a desert island. I know there will be storms along the way.

Instead, he said that even though everything came out clean, the tumor contained "serous" cells. That was serious. He thought I'd need chemo and radiation. Well, that sucks I thought. I needed to speak to the medical oncologist who would talk to me about chemo therapy. I've been given lots of printouts on uterine cancer and what to expect and treatment and side affects and I have all my path reports and there's a lot of medical terms and descriptions that I don't understand.

Now I've spoken with her and my cancer education continues. Here's what she recommends. Nine weeks of chemo with Taxol and Carboplatin. That sounds like a lot but it is really an infusion of each drug every three weeks.

The good and the bad about my cancer:
I'm at Stage 1A - this is good because it means the cancer has not progressed far at this time
I'm a Grade 3 - this is bad because of those serous cells meaning that the cancer is aggressive and now that we know its there we have to hit is hard.

Yes, I will feel like crap sometimes. I will probably be crabbier than usual if you can believe that. Yes, I will lose my hair but it will come back and some folks say it will be curly. That would be weird.

Well, after that first nine weeks is over, then I'll get some radiation (I'll find that out today). Then another session of chemo. And then? Well, we'll see.

I am so lucky to have a huge support group from my friends and family. So many offers of help. I might need rides to chemo. Not sure if I need that for radiation. Food? My appetite is still not right from all the drugs I had to take for the surgery. Nothing tastes right and this is likely to continue and probably get worse. House cleaning? I hate housework but seriously, this would be a real chore for anyone to take on - pounds of sand, leaf litter, and pet hair enter this house every day! I'll need to move so walking buddies might be helpful. Cards and letters? Not really necessary - just knowing you all out there on my side is enough.

I'll write about what's going on here so you can keep up - or not.

Oh, about the bald thing. I really don't have a nicely shaped head so I'm not sure if I want to flaunt it all the time. Many people make head coverings but while they hide your head they all scream, "I'm bald from chemo!" I found some cool biker 'do-rags' that have images of fists flipping a bird. I think I might go for one or two of those. People are likely to be so distracted by the design they won't notice I have no hair. :-)

Don't be underinsured and pay attention to what your body tells you. And please treat me normal.

Gail - May 29, 2015