Gratitude Eternal

I am grateful. 

I am grateful for the life I have had, and the people that helped me to be the person that I now am. 

I've been thinking about what's happend with me this last year, and I have to say I'm grateful for so many things as a direct effect of having cancer. I am grateful for my life, and grateful to be able to share my life with the people I dearly love. I'm lucky, so lucky, because I'm one of the few who have been shown in vivid light what is important in life and how to stay focused and take care to nurture those important things. It's been shown to me how important I am to all the people in my life. As well as how important I've been to people in my past, and how I can do something for the people around me in the future.

My life has ment something, I am sure of it.

This time of year one can't help thinking of the Dickensian stories told over and over again,  A Christmas Carol, It's a Wonderful Life, and the many more that follow that format, asking the question people ask them selves from time to time 'What would the world be like without me? Who's lives would have been different had I not been there in some fashion to change the situation - the equation?'

I don't know how often I've been involved in a ripple effect - but I'm sure there have been countless times that I've made a difference in someone's life on account of something I said or did - at least on some small scale; and I know this is true for everyone out there in the world.

It is especially true for the people who have reached out to myself and Dan this last year. Our lives have had an immediate effect for our betterment. I thank you. I am grateful to you.

If I didn't have my loving husband to help me stay strong and hold my hand and tell me everything would be alright, I wouldn't be able to tell you what state of decline I would be in by now.  I live for  Dan, and our parakeet Glen.

If I didn't have the army of friends in the music community who have given me moral support, and told me I was strong, and showed me that they cared;  I don't know how I could keep struggling to go on. I'm sure I would be at a much lower point that I am. I live for you my friends, you keep me going.

I've been thinking of the world in a different way lately, because there have been so many great things happening in regards to people reaching out to help me.  People have rallyed for a cause, a cause that is me. I am so grateful and also overwhelmed. It's come into focus for me that our music community is like a vast fabric, or membrane, knit together that heals it's self when wounded. Our people take care of each other when one is in need. I'm so lucky and proud to be a part of that community! I have such gratitude, and I am so thankful.

I've also been thinking of my 1/64 indian background, which is Osage indian.

I've read that the Osage indians attribute their origins to the separation of the earth, sky and water.

They believe that humans and other living species inhabit a narrow stratum between earth and sky called Hó-e-ga. This plane of existence consist of two interconnected realms:

a visible world in which things take physical form, and an invisible world of creative powers and spiritual forces.

I believe there is a third realm interconnected in this stratum, and that is the realm of the music community with it's world wide creative powers and spiritual forces. It is a collective of positivity that has true healing power and is able to keep the ill strong.

I am lucky to be in that caring realm.

I am grateful to all who have put in the time and effort to put on concerts world wide in my name to benefit me. I can not thank you enough, except in doing my best to stay strong and stay alive.

Thank you,
Letha

Love to you all, my caring army!

A Dickens' Ghost Visits

Over the last few weeks I feel I’ve had a glimpse from Dickens’ ghost of  ‘Yet to Come’.

I mean this by the way that I have been existing for the last few months with the feeling of what it must be like to over 90 years old. It’s as if I’ve been hovering round, doing the out-of  body experience, you know, having a look-see, at what might be my future self. What I was; was a drained, wobbling, withering shell of life that had seen better days. Was this what I could expect if I’m allowed to live to be 90?

I took a hard look at all the other  90 year olds in the hospitals waiting rooms, they were running circles around me. They were full of life, and I’m looking at them thinking, why is it so easy for them to get out of a chair? Granted, they’re breathing through a oxygen tube but they do seem so spry. Why don’t they need a wall to lean against? 

See, after my pituitary surgery, my decline happened so gradually, didn’t even realize I lost my strength weeks and weeks ago. It crept up on me in such small little ways.

My waiting room read, a collection of D.H. Lawrence short stories and poems, began to get to hard to hold, I had to give it up (I suppose I’m just tired, I’d say.) I thought I’d gained weight and hadn’t noticed, (humm, I look the same) because it was hard to get up out of chairs, or to reposition myself in bed. I was beginning to see that this was all heading to a crisis situation. I took the car in to the mechanic, because it wouldn’t turnover properly. The guy turned it over, like seven times in a row. No problem. I told him to watch me try, because I had a problem every time. We concluded that I didn’t have the strength to turn the key far enough over in the ignition  to make the contact. I was so upset. (This was the day before my November breast surgery- it was also my 10th operation this year)

When I’d had my follow-up with my neurologist, on November 7th, Dan and I  told him of our concerns. My slightly slurred speech, the weakness in my arms, and my generally tired, stiff body. He didn’t seem to have anything to say about it other than suggesting that I go and see an endocrinologist.  They ‘kindly’ made an appointment for me on December 19th. That meant waiting practically 6 weeks!

 Around that time I had to have Dan help me get in and out of my shirts because I just couldn’t get my arms raised enough to pull the thing over my head. I could drive a car - but I had to be pulled up-out of the car every time. And the few times I was out driving  myself I had to drag myself out almost on the ground then pull myself up over the car door  - just to stand up.

What were they thinking? After my surgery, I just would have thought it would have been a no-brainer for the brain surgeon to know I would need an appointment with an endocrinologist just as soon as I could after surgery - and not to have to wait 44 days.  I was on the phone every morning trying to get the appointment moved up. Those were great days! Not!

One amazing hi-light in my new old age was that my friend Stacy ( my wonderful, great friend Stacy) gave me the gift of having watercolor lessons. I had wanted the lessons for about 6 months, but, I just couldn’t do it financially. I’m so grateful for those lessons. I have to say I was at my worst point physically, but there was nothing going to stop me from having those lessons. It was a week long course and I could hardly stand but I did it. And, this is bragging, but I was best in class. I would do the same picture over and over until I was happy with it. I really learned so much, it was really special. I’m going to keep it up -  keep painting. I made a breakthrough and I know I can be happy enough to feel that I’ve made a painting that is successful. It’ll help me not to concentrate on my achey self.

Once my classes were over I went back to the busy task of getting my appointment, in horror of ending up in a hospital bed sooner than later.

After crying into the phone, practically in hysterics, I finally got my appointment moved. The lab report said that I had zero adrenaline, zero cortisone. I was put on Hydrocortisone immediately and immediately felt better. I could take off my own shirt like a grown-up. I have to take thyroid pills as well, and it might mean I’ll have to take these replacement hormones for the duration of my life. I’m keeping my fingers crossed for my ol’ pit gland to kick in and start producing for me again. I have new PET scan coming Feb 7th. And I feel that I’ll be returning to see my endocrinologist a lot sooner than planed. I know my pit’s shortchanging me in the hormone department, something has to be done about it.

PS:  A funny photo of me. This is how I looked while doing my christmas shopping. I had my Roy Orbison disguise on. I had just come back from having my retinal tear looked at, so I had to wear the dopey/cool? sunglasses under my glasses - then have the hat on to cut down on my floaters! A good look for me? I scared people and even had the mall security follow me around a bit. I also had a funny gait to my walk from being so stiff. I must have looked like a lurker about to slide some loot in my jacket!

I also want to thank Brad and Barry for their spectacular Holiday Spectacle. I so wish I could have been there to enjoy the fun. Thanks for your thoughtfulness!

LOVE!

The Day Before Black Friday

Looking back on this last year, I have so many things to be thankful for. I'm thankful for my husband Dan, who has watched a shadow cross over me, and told me I looked beautiful when I know I looked like more like death than death itself.  I'm thankful for my husband who held my hand in the worst of times, standing firm in knowing things would get better, letting me know he would be there for me anytime I needed him. His strength has pulled me through the hard times and makes me realize how lucky I am to have our little family of three, counting Glen our super fabulous parakeet. I know our little threesome family is special and I am very lucky to be alive to be a part of it. They have kept me alive. Most days we watch our Glen going about his beautiful birdness, preening, bending backwards in a way you wouldn't think possible, peeping up and saying his nickname over and over to impress us. He does. I am thankful for my family. I am thankful for Dan's mother who has kept him going and has been his strength in the beginning of this mess.

I am thankful for having such a great and caring Surgeon that has carved and carved away at my cancer making it shrink in fear of his scalpel. I'm thankful for his nurse who is a giving caring person. They have kept me alive.

I am thankful for you, my friends, Tom Lax, Brian Turner, Graham Lambkin, Scott Soriano, Chris Toenes, Travis Cobruh Jackson, Ruben Mendez, Scott Winland, Melissa Lunden, Shawn Slome (and so many others - sorry I'm a bit foggy) for everything they've done.

I am so thankful for the hundreds of friends, and for the people I have just come to know as friends. You all have helped me in so many ways. You have kept my spirit up when I was afraid. You let me know that I had people around me who cared about me. You kept me strong. I can't thank you enough. You have kept me alive.

I want to give thanks to the people that keep finding ways to help. Just know that it all mattered and I love you all very much!

I wasn't going to post an update because I've been very weak due to my pituitary not dealing out the right hormones that I need. I don't go in to see the Endocrinologist until December 14th.
I'll put an update then.

Dan just ran in to tell me that he realized we have a real Thanksgiving going on in our house. He's an Englishman, I'm an Indian, and we have a bird, who is not a turkey, and will not be eaten. And we are all truly thankful!

'I'm alive and well and living here on Living Island living every happy day
Alive and well on Living Island, living here in harmony and hope someday
 I hope someday the whole world will live this way!'

Still my theme song!

Living Island is the most amazing place!

Despicable Me, Looking Back At My Year as Cavity Sam

I must apologize to the readers of this blog (long suffering folks that they are) but I've been having a bit of a hard time, and haven't been able to see the computer screen well enough to write until now. Thank you for your patience.

I thought I'd start you out with a laugh. My pituitary surgery was only an overnight stay at the hospital—everyone who's had surgery knows you get woken up every 2 hours for vital signs—during one of those times I took some drugged-out photos of myself with my phone when I couldn't get back to sleep. The photos are a bit dramatic but I have to show you how much I looked like the cartoon man, Gru, in 'Despicable Me'!

Me

Gru

 You have to admit the likeness is astounding! Don't be scared, it's only the camera angle and my drugged up state that makes me look so horrid.

In an equally drugged state, I took 'Finger ET's' photo. He was my friend for the night, and stayed with me through all my vitals.

It was an easy overnighter, in the terms of my Otolaryngologist (head and neck surgeon) and my Neurologist, the surgery was a success. However, in my own terms, my surgery's success is questionable, and my recovery since September 28th has been a challenge.

As you may remember, I was having incredibly bad headaches from the end of August, until about mid October, which have been attributed to the swelling of my pituitary stem (a side-effect of Yervoy,) as well as a tumor growing inside my pituitary gland. The good news is the tumor was benign. My Yervoy treatment was stopped, the tumor was removed and my headaches have tapered off.  Although I'm thrilled to have had the tumorous peanut plucked, I have been left with a torn retina and tasteless taste buds.  This has infringed largely on my life. Both of the doctors that performed the surgery stand firm in their belief that the torn retina is not in any way related to the surgery, but is a natural occurrence that has happened in accordance with my age. The dissipated everyday tasting abilities of my tongue is a natural part of healing and may or may not come back months from now. As of now I can taste certain foods well, other foods less well and some foods might as well be cardboard. My vision problems on the other hand, to me, are not so coincidental, and seem completely related to the doc’s knocking about inside my nasal cavity. Up and over my optic nerve, and definitely related to sawing a hole through my skull to retract the problem nugget with a tiny metal clamp. To me, it seems very likely that that was the cause of my retinal tear and also the subsequent bane of my life! Horrible floaters which dip in and out—up and down, forever swirling about in, and out of focus, these things infringe on my life on a very different level.  

I noticed them first while signing the hospital’s discharge papers. I was handed a pen, and I literally  swatted at the air and said, “What’s that!?” Then I noticed the rest of the black shapes floating around in front of me. There was a quite large uni-brow—shelf or visor type shadow hovering above my head. These dark shadows are actually blod drops. The retinal tear was fixed by laser surgery three weeks later, but the gigantic dark floaters were left behind. I feel like I'm about to be hit in the head at all times by sharp corners; or that there's a bug on the wall, in my food, in my bed, or climbing up me—It's a dim and horrible personal fireworks show. For those of you who have a hard time picturing this - I have found on the internet a likeness done by somebody with photoshop, as seen below:

These dark spots are constantly swirling around. 

This in conjunction with the cardboard food I've been eating has just pushed me over the brink. And please know, that this has been hard for Dan, who has toiled in the kitchen for hours on end, cooking up the most amazing dishes, trying to get the right food combinations so that I'll be able to taste.  Dan's cooking is outstanding at all times! Before my surgery, I'd push anyone out of my way to get at the table (this includes Glen).  It's no fun cooking for a tasteless sap, you might as well serve up a bowl of dog chow. I wouldn't know much difference. I'm sorry, Rooster!

I have taken up wearing a Dolby/DJ Friendly truckers cap. (David, you know the one.) This, in someway helps the floaters from distracting me too much. It's just right for the field of vision my floaters roam in, and the right color for them to fade into. I'm lucky I got that hat!

Nose normal looking - eyes with floater protection 

On Monday, I have my 'Tell All' PET scan, and I'm really scared to find out what's inside me. I have to ask all of you to please think of me on Monday and send me Lucky Vibes! The scan will tell me if the Yervoy, (and the Interleukin-2) is working, even though I never got through to the last doses of both drugs. If anything new shows up in my scan other that what I already know about—the atypical cells in my breast, and the mass in my sacrum—I'll have to have the surgery done quickly.

My insurance switches over to the state's 'Inclusive' health plan, which is insurance for the un-insurable. I'll have a new higher deductible ($5000) starting December 1st, and it has been suggested to me by an insurance broker to have whatever needs to be done—as soon as possible, before that date. I'm terrified!

Dan is going to try and organize some art sales and do some benefits to try and help out.

I know for a fact that I have breast surgery coming, which means it'll have to be done this month!

I'm coming up on the one year anniversary of my diagnoses. It's unbelievable that it was only November last year that I was told I had cancer. I didn't know I'd be living the life of Cavity Sam! (the man depicted on the operation game board)

I can't quite believe that all the surgery and treatments I've had were all done in one year. I'm just terrified that I'll find out I have more coming. 

Please think of me on Monday, I will be so thankful! I'm so tired of living the life of Cavity Sam.

 

Plight of the Pituitary

The Great Melvin Burkhardt photographed by Joel-Peter Witkin

OK! OK! It's a Pituitary Tumor!

It's getting extracted on Tuesday the 27th! It's upsetting, but it's not the worst thing in the world.  Ninety five percent of the time they are not cancerous and, in my case the Yervoy most likely shook it alive with a little swelling. Which, I have to say in my book is a good thing! What if I never found the stupid peanut? I must say that I'm more than annoyed with the thought of more surgery! This is the first time during this whole cancer thing that I have felt crappy all the time. At least solidly crappy since the beginning of this September.  

The first day I had liquid steroids, instead of Yervoy, I felt like a champ! And the day after...  I was just a streak, almost invisible, running around the house like a Blue Ass Fly. I was out riding a bike, doing projects right and left, cleaning the house. I was unstoppable - till 5:00AM the following morning, when the headache came back. That's it's MO, to strike while I'm sleeping. To shake my brain- with its sharp spiny tendrils, groping around for a spot where it might hurt the most. Arrrgh! I wake up, then get up to take a steroid and an antacid with a bit of food. Then I go back to sleep (it takes a while) and wake up feeling better, usually. The steroid can carry me all the way through the evenings most times - but lately, not.

Great for a brain massage. In my imagination this hand is much thinner and a lot it more spiny!

My oncologist, after discussions with the neurology team, deemed that it was in my body's best interest to continue the Yervoy, and my head-box was going to just have to put up with a few technicalities. I've come this far with the Yervoy and I went in for my third infusion yesterday. I didn't know that the treatment would ratchet up the headaches again. I thought the steroids would keep it all under control.

After a phone consult with my oncologist this morning, on his advice I upped the dose on the steroids. It helped - a lot. But somehow today I just feel a bit gloomy. I'm finding it hard to pick up the paint brush, or work on a really great piece of Tretetam soundscape. I'm not really too worried - I have faith that things are working out, and I just want to get on with feeling like something isn't finger flicking my poor ol' Pituitary Gland like a mini punching bag. The poor dangler!

I also just want to say how important it is for me to have Dan continue on with our NY plans. Thank god I have this surgery early in the week, which will allow Dan to be with me, and to take care of me - (MY ROOSTER!!!!!!) for  a few recovery days. But you see, I don't want to feel that this thing has control of us! God Damn it, I'm fighting it. And that means not letting it take hold of the things that are important to us. We didn't cancel our May tour - and thank god we didn't! That was very special to me. And though I'm not going to NY this time, I will in the future. For right now, Dan will have to be the one standing up to this stuff. We won't let it get us down! I'm calling it, "Business as Usual!!!"

Tomorrow, headache or not, I'm pushing myself to pick up a paint brush, or  I'll make my weekly two loaves of whole wheat bread. That's with no sugar, packed with flax seeds, buckwheat, oatmeal, and sunflower seeds. It's great, and I make it on Sundays! No exceptions!

One more thing - I just want to let people know that I do have another surgery coming up - just so it doesn't look like things keep coming at me. It'll be another breast excision to remove some atypical cells (not cancerous) from the scar tissue of my right breast. It's also not a big deal - it'll be done in Mid-October.

So right now I'm looking at some cancer-free holiday time, and boy am I thankful!

LOVE TO EVERYONE!!

Pituitary Purgatory

Sometimes you just have to whine, complain, and feel sorry for yourself. Today I'm doing just that!

I went to have a talk with a neurosurgeon in Raleigh this morning. I was so lucky to have them let me drop by, and fit me in to their busy schedule.  Dan and I were ready to wait the whole day - but it was only about 20 minutes before my name was called. The neurosurgeon and his assistant greeted me and Dan, then ushered us into a small conference room. They were both very nice and explained how my Pituitary Gland was abnormal, swollen, and could if it kept swelling cause blindness, among many other problems in the hormonal department. Then there is the scary, tiny fraction of a chance that it could be a tumor. (I'm convinced that it's just a reaction to the Yervoy.)   It's not a bleeding tumor, but I now have to have another MRI. This one concentrating on a small area just behind my eyes, and sinuses; dangling from my brain -  the Pituitary Gland; which will be imaged section by section in slice like fragments to see what the hell is going on with it.

This new MRI and swollen PT is creating problems already. It's preventing me from continuing my Yervoy treatment and now there is a small chance that the insurance won't cover the cost of the MRI. Why, you ask? Because I just had an MRI last week. It's too soon to have an other one billed to the insurance company, so the hospital says. I had a conversation with the imaging person, and she said she'd work on it with the insurance company first thing in the morning.

I'm sure that come 9am tomorrow morning, it will all be straightened out, and Dan and I will drive to Raleigh to be there at 12:00 as scheduled. The neurosurgeon said that if I have the MRI at 12:00,  I would be able to get the results by tomorrow evening or by Wednesday morning.

I may have to halt the Yervoy treatment altogether depending on how all the doctors involved with my case feel about the results of the imaging. I suppose the Yervoy could do irreversible damage to my pituitary gland on one hand - but not doing the Yervoy treatment could do irreversible damage on the other hand. Why can't things just be stabilized, level out and be somewhat normal!? I'm getting tired of this wild ride. I'm really ready for some easy cruising.

Purgatory by Hieronymus Bosch

Ten Day Headache! *#!**@#!!!#!!!!

Today I was supposed to get my third infusion of Yervoy, but instead I got a IV full of steroids. I've been having bad headaches for the last ten days. Not your usual alcohol residual, or 'haven't eaten anything' type of headache. It was very different. It was a steady climb from a low grade - "I can ignore it" type - to a consistent, persistent phantom trying to break my skull open to feast type. Then you sprinkle in a bit of 'Stabby McStabbington' behind the eye sockets every few minutes, while thinking of ice picks, and you have an idea of what it was like. It never ended! I couldn't move my eyes around. It hurt. It hurt to lay my head on my pillow. Laughing, coughing, and sneezing hurt. One of the most unusual things about it was I could feel my heels in the center of my head while walking, every step was like a fingernail flick to my brain. OUCH!!!!

Evan, my oncologist's P.A., said it was a sinus infection. She had me on Mucinex, Sudefed, Excedrin Migraine, and regular ibuprofen - all at different times - nothing worked for days. So I was sent to have a MRI on Monday, and this Tuesday morning I was told I have a swollen Pituitary Gland stem.

This image and the description below was pulled from rickrichards.com 

The pituitary gland, produces the hormones the body's needs. These hormones are then circulated in the blood to the body's tissues, including other endocrines.

Evidently it's not that serious, the steroids should take the swelling down and I'll be able to continue with my treatment, hopefully by next week. I'm slotted in for the 22nd of September. The picture above  makes the Pituitary Gland look like it's part of my brain - but it's not really, and I couldn't be happier.

So as of now, I feel so much better. I don't feel the pressure against my optic nerve as much. The headache is leveling. 'Stabby' is making less frequent appearances - thank god, and I should be back up to my norm by sometime tomorrow.

I think I'll be able to sleep tonight!

PS: I don't know how I did it - but I played guitar with Dan at the Hopscotch Festival in Raleigh NC. We sounded great thanks to Tony (Keys) and David (Drums) who came down to play from NY and DC. I have to tell you the best part of the whole night was that I had the best 'seat' in the house to see and hear Dan do his blazing guitar solos! He's amazing! I want to thank Tony, and David for coming to play with us. Sorry I won't be in NY!

Hopscotch Festival 2011

Love to all!
Letha