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6 years ago  ::  Jul 05, 2008 - 1:00PM #1
itty
Posts: 2,949
I wanted to try to create a space for people who are living with cancer as well as for their loved ones. This, I hope will the sort of place where we can all come on it,  sit down, relax and have the drink of choice, grab a cybersandwich and let it all go.

I hope we can share our success stories, share our losses and brainstorm. Let's talk about tips, things that work, things that don't work and why. Cancer is a life altering experience for everyone who is touched by it. I think we can all gain from sharing who we are, our stories, our lives- pre and post cancer. It doesn't all have to be love and laughter. There are benefits to both laughter and tears. We all ride an emotional roller coaster. Lets share it, shall we?

We all have a million questions. I imagine we have all had those moments of terror when we feel caught in a maelstrom of tons of info being thrown at us, trying to hold onto our lives and feeling that we are caught in the grip of an inexorable force.  Alternatively we have had moments of ludicrousness and delight. Its all part of the gamut.

As the title says this is a free for all. I ask that we do be respectful of one another. Lets be gentle, be strong, rage and roar, get silly, laugh, love, cry, shout and LIVE! We have cancer but we aren't dead yet! Let's all go for a walk!
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6 years ago  ::  Jul 05, 2008 - 1:20PM #2
itty
Posts: 2,949
I shall go first:

itty notices a loud noise and slips closer to investigate. She creeps into the door of the bistro. Oh, my! Look at all these people. They look my me! Some have scars, some have no hair. Others have ports. Others look fine. All of them sharing, laughing and comforting those who can't do that yet. I been looking for a place like this for a long time.

The person who masquerades about B'net as a little gray cat heads for the bar and orders a tall  blackberry  fruit smoothie and an avocado sandwich.

I am Jo. My usename is itty. It honors a little cat that I lose several years ago. She was part of my life for nearly 17 years. She was a Cat Who Walked Her Own Way. A fiercely independent little cuss who always found time in her busy day to creep into my lap and share herself with me.

I have glioblastoma multiforme.  It is a stage four cancer of the brain. it is incurable. At present I am in remission. I have finished the initial round of chemo and radiation. I am on a chemo maintenance regime and will be for the next year.

When all this happened to me I was shocked and stunned. Also terrified. I am not afraid of death or dying. I felt like I had lost control of my life. In a sense I did. Cancer took it over. I felt like I walking around with a big ole' sign over my head that said her name is Cancer ______ (last name goes here). I lived in cancer fog. I had chemo/cancer fatigue. I just felt lost.

Then a miracle occurred. Nope, no cure. I found a whole lot of friends at the cancer center where I was being treated. They laughed with me, let me cry on their shoulders, chided me, celebrated with me and refused to let me wallow in doubt and self-pity. I owe them my life in many ways.

At this point I am well, getting over the fatigue and waiting for my hair to grow back. I have a quasi-mohawk. My hair fell out on the side where I was radiated as well as along the back and on the other side. My youngest nephew and nieces love it. They have used rinse out hair color to give me red, blue, purple, neon green and shocking yellow hair. I had to quit that. I though I was going to cause a multi-car pile up in town. I live in a rural area.

Ahhhhh, the smoothie and sammich are ready. Anyone want to sit down and chat?
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6 years ago  ::  Jul 06, 2008 - 12:19PM #3
mollyboo
Posts: 9
Hello itty,  I'll have a smoothie & sammich too.  I can equate the Bedlam Saloon with much of my experiences with cancer, ugh!  I fell down the steps late one night studying for finals, the doctor was more interested in the lump in my arm which turned out to be fibrosarcoma......after 2 surgeries & while in radiation therapy, the "baseline" CT of my lungs showed stage IV non-small cell lung cancer, adenocarsinoma.  After 2 more surgeries & hospitalizations for a colapsed lung where they put a tube in my chest to breath better, a case of systemic cellulitus in my arm, and another surgery to remove a grapefruit size tumor with my ovaries (benign, my first stroke of good luck) I thought the year could not possibly get any worse....it didn't actually.  I have been on oral chemo since (2006) and I am stable.  The lung cancer is not ever supposed to go away but at least I've got it at bay.  I'm very lucky actually, it was a good thing I was such a clutch on the steps! I do volunteer work along with my main love, Art.  Strangely, I've never been happier at this point in my life.....I just feel so blessed.   mollyboo
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6 years ago  ::  Jul 07, 2008 - 12:23AM #4
itty
Posts: 2,949
Hi mollyboo. Glad to meet you. It sounds like you went through the wringer.

I can appreciate the suddenness and the strangeness of how you found out. I was an over the road truck driver. I had come in for hometime and to have a stress test done. I had a small heart attack two and a half years ago and its part of keeping my DOT medical certification. While I was home, and thankfully before the stress test, I got a headache. It wouldn't go away. It got worse and I finally had to go to the ER one evening. Fortunately the ER doc happened to be one of the oncologists doing his regular rotation. He got me something for the pain, asked about a million questions, shot me into radiology for a CT and found two masses. Next thing I know I'm admitted to the hospital, poked, prodded, shaken, stirred and blended. The MRI showed two masses and I went to surgery only to wake up to GBM. Not fun.

This was in February of this year. I am well right now. The post-op baseline MRI showed no changed with the exception of what appears to be scar tissue. I got lucky in a lot of ways. The tumors were near the skull- easy to get to- encapsulated, had a weak blood supply and were weakly attached. My neurosurgeon has, in my family doctor's words, had enough schooling for three surgeons. LOL...He did a good job of getting all of the tumor material that the eye could see. He could n'ttake the capsules because they were too close to the ventricles and he didn't want to chance letting cancer cells loose into the cerebrospinal fluid. I have a better chance than most of having a good quality of life for several years.

I can understand what you mean about being happy right now. I am too. Everyday is a wonder! I've learned to take time and really see the world around me.  I am closer to my family and friends. I dearly love the feel of rain on my head.  Well, okay, not cold rain. Then I have to put on a hat. LOL...I don't know how bald men can stand to have cold rain on their heads.

I am arranging to volunteer at my cancer center. Those wonderful folks made the difference in my life. I want to give that to someone else.

I think we are blessed, mollyboo. This life is precious. We know that in a way that many people don't. It is a gift and not to be wasted.

Hey they have a piano player here! Wonder if she takes requests. A little rag-time would suit my mood. Got any favorites?

Blessings to you,

Jo
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6 years ago  ::  Jul 09, 2008 - 11:33PM #5
frankieestep
Posts: 682
Hi Jo!

My cancer journey also involved driving a truck over the road!  I used to drive with my ex husband.  I was determined to not let chemo change my life, so I continued to drive while I was having chemo for stage III breast cancer.

Love the Saloon!  Great idea!  I'll have a spring water and avocado sammie with lots of tomatoes and chives. 

Having chemo changed the taste and tolerance of some of my favorite foods for a while, but I'm now a 12 year survivor, and eat anything and everything I want.  I do stay healthy, not by the usual standards, but by the standards I have researched.

Having just gotten back from a little trip to Louisiana, I'm up for a little Jazz or maybe Blues from the band.
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6 years ago  ::  Jul 12, 2008 - 9:32AM #6
itty
Posts: 2,949
Wow! Another woman truck driver. So pleased to meet you Frankie. Do you still drive? I can't. Since I am could have seizures my med team won't let me go back to it. Its sensible. I sure wouldn't want to have a siezure while piloting a big truck down the road. I miss it though.

That drink and sammich are on the way.

Just how in the world did you get through treatment for stage III breast cancer and manage to keep working? That is amazing! I am volunteering at my cancer center and looking to do some tutoring at my local community college. I was medically terminated from my last driving job. Not out of meaness but rather because I hadn't been with the company long enough to stay on the inactive rolls. I had just sold my truck and taken a company job less than a little over three months before I found out I had cancer. If it hadn't been for the insurance that went with said company I would have been up that well-defined creek.

Ditto on the taste of food change. Its actually been good for me. I do love my fruits and veggies. I miss steak. I hope that comes back. I'm jonesin for a big thick ribeye! Seriiously though I am finding I have more energy and I dropping weight in a sensible way. I do walk and that helps. I was pretty over weight when I started my odessy. I gained in treatment. I was on massive amounts of steroids to combat edema in the brain and so I ate everything in sight!

Life is much better now. I have figured out how to navigate my particular maze. That helps.

Oh, let me see how about a little Earth Kit? Hope you enjoy the sammie!

Jo
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6 years ago  ::  Jul 14, 2008 - 10:47AM #7
frankieestep
Posts: 682
Hey Itty!

I still drive a very big truck, but it's at a copper mine now.  It's the one they show on Modern Marvels, with the 12 foot tall tires.  Makes that tractor trailer rig look LITTLE!!

Love the sammie.  Avocados and tomatoes are favorites for me.  Last week, I was in Louisiana with my daughter and her family, and she and I went to Cafe Du Monde for coffee with chicory and beignet.  It was truly a wonderful time! 

I've found that enjoying the little things in life is very important to me now.  Things like a day with my daughter, spending time with grandkids, enjoying different foods, just going to work and home again.  Those things make my life a little happier. 

I've learned a lot since cancer.   Things about me and how I look at life in general.  It's not what I used to think it was about.  Now I realize that it is a gift, and we need to share this gift with others.  Sometimes we need to share it with our families, sometimes with friends, and sometimes with people we aren't very close to......yet. 

So how about a little Zydeco from that band????
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6 years ago  ::  Jul 14, 2008 - 1:25PM #8
itty
Posts: 2,949
[QUOTE=frankieestep;623764]Hey Itty!

I still drive a very big truck, but it's at a copper mine now.  It's the one they show on Modern Marvels, with the 12 foot tall tires.  Makes that tractor trailer rig look LITTLE!!
[/QUOTE]

Ohhhhhh, my! See Jo salivate. Jo wants one. Sigh....It won't fit in the driveway.  I have a friend who is applying for a job in the mines. I would love to get close to one of those and maybe even try driving it.

When I was driving for Prime I took a load to the Baltimore shipyard and delivered to one of the ships there. I drove on the pier and tailgated to a crane that swung the freight up and on board. It was awesome! I got there too early to start unloading immediately. I got to go on board, got a small tour and ate breakfast with the crew. I was escorted to the wheelhouse (?) and looked down at my truck. It looked like a Tonka toy!

[QUOTE]
Love the sammie.  Avocados and tomatoes are favorites for me.  Last week, I was in Louisiana with my daughter and her family, and she and I went to Cafe Du Monde for coffee with chicory and beignet.  It was truly a wonderful time! 
[/QUOTE]

I do so love good coffee. That is one thing I splurge on. Community Coffee is one of my favorites. I have never been to New Orleans. Another of those places on my list.

[QUOTE]
I've found that enjoying the little things in life is very important to me now.  Things like a day with my daughter, spending time with grandkids, enjoying different foods, just going to work and home again.  Those things make my life a little happier.
[/QUOTE]

I understand that, Frankie.  I think its the little things that make up a life.

[QUOTE]
I've learned a lot since cancer.   Things about me and how I look at life in general.  It's not what I used to think it was about.  Now I realize that it is a gift, and we need to share this gift with others.  Sometimes we need to share it with our families, sometimes with friends, and sometimes with people we aren't very close to......yet. 
{/QUOTE]

I am finding the same thing. Life is wonderful. Its never what I expect. I've had to do some hard thinking. I used to think that I had to do something profound to make a difference in the world. Now, I don't. Making a difference can be as simple a gesture as getting someone a cup of coffee. I realized that I make a difference every day. I also realized that my family and friends are my heroes. You made me think here. Sharing this gift.  Now THATS profound!

[QUOTE]
So how about a little Zydeco from that band????[/QUOTE]

Will some Zydeco Joe do ya?
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6 years ago  ::  Jul 17, 2008 - 4:39PM #9
itty
Posts: 2,949
Ah, its one of THOSE days. You know the one. I just can't get out of poor pitiful me mode. I am feeling very sorry for myself right now. I hate this.  All of it. I hate cancer. I hate having cancer. I hate having to come to terms that while I want to beat this I probably won't. I hate the fact that cancer kills people. It hate it that it's going to kill me. . I just really am sick and tired of the whole mess I am sick and tired of being literally and figuratively sick and tired. I want to jump in a hole, pull it in and stay in the dark forever. I want to go to sleep and never wake up. I want this to be over. I want to know when. I want to know where and how. Well, alright I know some of that. I just want to know why. I know I am never going to know why but doesn't mean i don't wonder.

I'm tired and lonely. I feel like I am alone in this. Everyone around me is mostly healthy. They are alive and have no expectation of dying soon. My family  and friends seem so obtuse some times. They just doesn't get it. They expect me to be always upbeat, to be doing my war dance. They want my strength so they can get through this. I don't have that much left to give right now. I need a little place of my own where I can get the real time comfort I need.

Yep, pitty party all right.

Most all of the time i'm upbeat. I am positive. I am ready to clear that swamp and arm wrestle the alligators. Hell,  most days I go alligator hunting with the aim of making boots!

This ain't one of those days. I will be better tomorrow. I probably will be better later today. I just need to have a fit, fall in it, stew for a while, cry, yell, rage and get it out of my system.

All I can say today is cancer sucks. And not well

Itty creeps into a corner. There are shiny strings and sparkly things to play with. She reaches out a paw and tries to play. Itty is just so tired.
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6 years ago  ::  Jul 21, 2008 - 6:30PM #10
frankieestep
Posts: 682
Itty,

Although I'm sure you are past the feelings of hopelessness by now, I wanted to let you know you are not alone.  I'm here, and you're in my prayers.

We've all had the "why me" blues.  Truth is, cancer is no respecter of persons.  It is just part of the human condition, and anyone and everyone is subject to it.  Even though cancer may be the cause of your human body ceasing to function, don't let it take the life from you while you are still here!!!!  Human life is a terminal condition.  It's not important what causes that life to cease, what is important is how we live what time we have. 

I know you know this.  I'm just reminding you.
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