I Got The Call!

Hooray! I was told yesterday that

 I do NOT- repeat- do NOT have lung disease! I can't express the relief I feel.

Woe is me! I thought it was the beginning of the end. You know, it's hard enough to know there are some unidentified solid objects smack dab in the middle of my chest, threatening (in my worst imaginings) to seep through the walls of my lungs to take over completely, squeezing the life and breath out of me; finishing me off with some 'chokeslam' to the ground. But, then on top of that, to be told the likelihood of me having lung disease as a probable cause of the 20% decrease in my breathing abilities (after looking at x-rays and PET scans) is high on the list! How horrible is that!

This is not me, the breast are to perky for someone my age.

I can't tell you how scared Dan and I have been. It's really hard to wait for results when you don't know what to expect anymore. I haven't been feeling my best lately, so I was bracing myself for the very worst. Last week I had gone in for an Echo Cardiogram and a specialized chest CT scan. Thank god for that, because it's a lot easier to lay down in a tube while holding my breath than having a slice of lung cut out for biopsies!

Thank god! I'm so relieved! I've been getting used to the feeling of things being heaped up on me. 'Oh sure she can take it! Let's really pile it on'. But that lung disease thing was just over the mark. I know the doctors are trying their best to look out for me - but they also don't listen to me. They discount my prednisone theory as the cause of my shortness of breath, and are very into delving deeper into some complicated scientific issue to find a cause.

I still have to have a biopsy of one of the spots in my chest; so sometime after the 12th of March, I'll find out if that's something cancerous; and if so It'll mean a whole new road of treatment and surgery and god knows what. But if the biopsy turns out to be something like inflammation - then I'll have to grab my doctors by the scruff of their necks and rub their noses in my Prednisone theory, like naughty little puppies that have gotten into something they shouldn't have. Like my chest!

You know, I wasn't wrong about the Yervoy swelling my Pituitary. Had I been taken off the Yervoy earlier, the swelling would have gone down and I wouldn't have had to have a biopsy up my nose and in my brain; and I wouldn't have had all the adrenal, thyroid, and growth hormone issues I have now.

But, about the up coming biopsy; It'll be done by one of the leading Thoracic surgeons in the nation according to US News World and Report. I'll be in good hands and I suppose it's better to know what I'm dealing with, than not knowing. So sometime Mid March I'll be posting again - hopefully with great news.

I want to thank everyone for being so supportive. It has meant so much to me from the beginning of this shit. I plan on plugging on for eternity! So plan on reading a lot more posts from me!


Love you all!

You won't find me in a chokeslam! 

Roller Coasters Aren't Always Fun!

I'm back from a long day at the clinic with Dan. I had early morning therapy. Thank god for my therapist, sometimes I really need to talk about cancery things. From there I had to have an echo cardiogram, which always make me squirm. I don't have too many things that wil drive me up a wall - but heart beats are right up there with finger nails on a chalkboard. Even that sentence made me squirm!

Then after that, I had to have a special CT scan especially for the chest. It wasn't painful or too yucky - but it's scaring the hell out of me! The talk among the docs has been about cancer induced lung disease. Criminy! I don't want lung disease on top of everything else! I keep thinking it's just a simple allergic reaction to my prednisone. Can't it just be that! Please!

I'll find out tomorrow at some point what the deal is, after my new Pulmonologist looks at all the data. But in the meantime will you all put together some good vibes for me, please? I'm so freaked out. I'm already worried about my consult with the Thoracic surgeon on March 6th. And then the biopsy of one of the spots near my lungs on March 12th. My pulmomologist has requested that my thoracic surgeon (who I haven't even met) slice a bit of lung off during the biopsy, so they can biopsy that too. Criminy!

I wish I were on a real roller coaster, like the Cyclone (what fun that was!) instead of this physical and harrowing mental roller coaster. On the Cyclone I used to scream as loud as I possibly could because it was fun and acceptable to do so. Now I want to scream at the top of my lungs but I'm afraid I'd be too loud and do some damage! Cripes!

Meanwhile, I'll be painting at a feverish rate until I get my docs call.

I want to thank all the folks out in San Francisco that are doing a benefit show for me tonight. Thank you for playing, maybe it'll be the good vibes that'll help with tomorrows outcome!

Thanks!
Love to everyone!

Cart's Before Horses Don't Move

If you put a cart before a horse, that cart ain't going nowhere; but the horse might run off in a different direction! That's what's happening, my horse is rearing up and ready to run!
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Beware of doctors contacting you over the weekend! Typically it won't be good news. I had really settled on waiting for three months to see what would happen with the new hot spots that had shown up on near my lungs, in my latest PET scan. I had all kinds of distractions waiting in the wings to keep my mind from dwelling on the fact. Things to do like: taxes, painting, and I even thought I'd do some music. I haven't worked on my own music in a while.

But I recieved an email from my oncologist last Saturday, and it's looking like I'm about to have an other round of surgery.  My doctor showed my PET scan to a Thoracic (chest cavity) surgeon, and he concluded that it would be in my best interest to have a biopsy done as soon as possible.
I have a consultation on March 6th to find out the in's and outs of the risk involved and exactly what the plan is;  and then I'm scheduled for surgery on March 12th.

I don't really know what to think about this one.  It's better to be safe than sorry - but I'm getting so tired of having to be in the hospital and then laying about until I heal.

But then having all these breathing problems is no fun either, and what if it's related? I had a battery of tests today (Friday) to see if we can get down to the bottom of my Breathing and Chest discomfort problems before I go in to surgery. They didn't really come to any conclusions - but there is some concern on their side about lung disease (which could mean any of many, many things)

It won't be long before I have my own private entrance to the clinic. I'm there almost every day! My doctor's receptionist can now recite my medical number when I say hello on the phone, that's before I can get my name out of my mouth!

Another pressing problem I'm having is that I'll have to make room on my Cavity Sam photo for another surgery! It's getting pretty full up.  I hope I don't have to start a Cavity Sam 2 photo!

Looking back over this photo, I do have to say that my floaters are getting better, and that's good news! Maybe I can take that one off to make room.

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I also can't express how much WFMU has been such a great staple in my life over the years. It would be a different world with out it! For everyone that is able to pledge, even a small amount helps. Let's keep the music going!

Pledge Now!

Go Away Cancer! Everyone Hates You!

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Joke:

What get's smaller and shivers in fear?

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Answer:

Cancer on the run from a cocktail of IL-2 and Yervoy!

I got mixed results from my PET scan. Scary weird shit news mixed with really great news. My oncologist says that all my old cancer spots have gotten much smaller or have gone altogether! Yes!!!! It's true!!! Even my most worrying cancer spot in my sacrum bone looks like it's on it's way out!!

Ha! I spit on you cancer, and all your poopy ways!


That's very good news, and Dan and I are so happy about that! I was fearing the cancer would have spread through my sacrum bone to other places. What a relief, it doesn't look like that'll happen!

I do have to mention here, there are some new spots that lit up brightly in my new PET; but since it's near my lungs and hard to biopsy, my oncologist wants to wait for three months and do another PET to see if they change in size. That makes me so nervous - I have an Art Therapy group that I belong to at Duke Hospital; and the last time we met, we wrote down our experiences and read them out loud. One of the women there described all my symptoms to a T, the shortness of breath and chest discomfort as a prelude to her stage IV lung cancer. 

When my oncologist told me about these new spots I just about 'had a heart attack' (Ha, ha!).  My oncologist described the spots as "Activity'. I'm thinking 'Oh Shit!' He says it doesn't have to be cancer. I'm still thinking 'Oh Shit!' He didn't want to order a biopsy because it would be very invasive if it didn't turn out to be anything. And since I'm still suffering daily from the aftermath of my pituitary gland biopsy, I agreed to wait. But I can't help being frightened.  If my breathing wasn't so bad, I most likely wouldn't be as freaked out. That Art Therapy monologue haunts me.

 I'm just going to run with all the good news my doctor gave me as long as I can! I'm going to try to figure out this breathing problem and not worry about spots until my three months is up.


It's good to be alive!

I'm gonna wash up with some WFMU Miracle Soap!
You can too! Just hit the image below and pledge to keep great music playing!

Waiting Patiently

It's been almost two months since I last made an entry on my blog. I don't know where to jump in - so I'll just take a plunge. It seems there's always  got to be something going on with me. I can't just have a block of time where I'm feeling at 100% and not worried about some mystery medical problem locked up inside my body.


I moved through November and December like a Slow Loris, (just not as cute) and in January I was told why.  I now don a Medical ID bracelet engraved with my new label,  'Adrenal Insufficient'. My Pituitary Gland was short changing me in quite a few departments, although Adrenalin, and Cortisol are the ones I'm missing most. It's been a real struggle trying to figure out how much medication to take, because my body's trying to spurt out some hormones, but just failing to get it over on the plus side of the zero mark.


 I had to switch from Hydrocortisone to Prednisone, which at first I thought was great! On the Hydrocortisone I was getting a feeling that my skeleton hurt. I know that's a strange thing to get across - but it wasn't muscular or joint aches, it was much deeper. I felt like October's party-shop skeleton put together with creaking eyelet hinges. I had to keep a stringent schedule of pill popping, and if I missed one, I'd start to crumble and crawl to the floor around at three o'clock in the afternoon.


When my endocrinologist changed me over to prednisone and I had about two weeks of bliss! I even did a free two-week trial at the YMCA - feeling good and strong! But on my birthday I had a terrible feeling of shortness of breath, pressure in my chest area, and general discomfort. I called my doctor immediately and explained I was having these feelings again. We had talked about this previously, and she said it was most likely a side-effect of either the prednisone or the thyroid medication I've been taking.  She always asks me if I'm having heart-attack symptoms! I'm sure it's not a heart attack, because the feeling doesn't come on until after I've taken my drugs. I talked my doctor into cutting my doses in half, because I felt better that way.  I went on like that for a week - but on my next vist to the doctor I found that I was falling way below the 0 mark again and had to up my doses. My labored breathing and chest discomfort hadn't lessened and my doctor talked me into going to get checked out at an Urgent Care clinic since she wasn't able to fit me in that day. I really do try to take doctor's orders seriously these days - and I really respect my endocrinologist, so I went. Unfortunately, when they did an EKG, it came out suspect, and I was urged to go to the emergency room for further tests. Of course I didn't want to go - but right at that moment my endocrinologist called me- I passed the phone off to the attending doctor and they concluded that I should go to the emergency room. What a DRAG!!!! I drove there, wondering where I should park. Do I park in the garage, and walk in? Do they have their own parking garage that's closer? I took a chance and just drove up to the door. Voila! They have valet parking - a good thing for people with suspected heart-attacks!




I had five EKG tests within a 13 hour period. Every time, I'm telling them that it's not my heart - it's my medication! They had me inhale radiation for a lung test, looking for blockage and to monitor my breathing abilities. I had a blood clot test. There were no conclusions to my symptoms from these tests. They really wanted to keep me in, and have me admitted, so they could run a million more inconclusive tests. Every hour or so a doctor or attending nurse would show up to stand over me and my many wires, to say they didin't know why I had been feeling the way I had, there was no reason for it and they were ruling things out one by one! They kept telling me I should be admitted, because they had many more tests to do. It seemed every other word that came out of their mouths was 'Heart-Attack!' -  And I was feeling like I was going to have a Heat-Attack from them scaring me. I finally agreed, adhering to their words 'better to be safe than sorry'. So, about 20 minutes later an oncologist came in to give her 2 cents worth. I'm glad she did, because she looked at my thyroid results and said I was most likely having a reaction to my medication. I was released at 2:30 am! Geez! Where was House earlier? I would have been out'a there within the first 2 hours!

My Medical ID for Adrenal Insufficiency

My Medical ID for Adrenal Insufficiency
disguised as a charm bracelet - notice the budgie charm in Glen's honor!  The Anchor is in Stacy's honor!

I'm still having all these terrible symptoms - but at least I know I'm not dying. Evidently it will take about 4 months to get conclusive results about how my pituitary is working and what exact medication dose to take. I'll also be having a new PET scan, on Monday at 1:30 -  which I'm a bit wigged out about. It'll tell me if there are any new cancer cells that have gone wayward, and may shed light on the reasons for my shortness of breath.


If you all can put out the vibes again for a good result I'd appreciate it so much! I do appreciate you all so much, for keeping me going  - it helps so much to know that you all care. I want to thank all of you that have put on benefit concerts, and all of you that have donated to my fund. I want to thank all of you that have benefits planned in the future - it helps so much, on so many different levels! I can't even tell you what it all means to me.
                _______________________________________________________


I also want to mention a few other things here as well!


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I've been doing lot's and lot's of watercoloring, and have put everything up on a new blog called:


Letha's Funtime Watercolor Paintings And Other Art

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And here I want to say a few words about 

WFMU !!!!!!!!!!

I'm a huge fan of WFMU, as I'm sure a lot of you are too! For all of those of you that don't know WFMU (who couldn't possibly know!??) - WFMU is the best, most amazing, independent free form radio station of the world! No kidding! It's the longest running free form radio station in history  - it started in 1958! That's a lot of years of bringing such diverse fantastic music! It's the best way to find out something new,  you didn't even know you liked! 


I remember my first time playing live on WFMU, it was a blast! And Dan has played more recently on it and it's just great! (When Dan and I first got together, [in like 1999] he was doing a WFMU live show - I went to the drug store and bought a cheap transistor radio so I could listen to the show in Stuyvesant Town Park.) 

I just love WFMU!


Well, we have to keep it going, and the only way to do that is through listeners support.
Wouldn't it be great to be lumped in with these notables?


(taken from Wikipedia)
'Other notable fans and supporters of WFMU include Neutral Milk Hotel frontman Jeff Mangum, Kurt Cobain,^[6] screenwriter/director Ethan Coen, MAKE magazine editor-in-chief andBoing Boing co-founder Mark Frauenfelder, Led Zeppelin lead singer Robert Plant, musician Suzanne Vega, artist Cindy Sherman, indie rock superstar Ted Leo, Sonic Youthguitarists Lee Ranaldo^[7] and Thurston Moore, comic book artist and writer Evan Dorkin, film director, producer and actor Kevin Smith, musician Moby, The Cars vocalist/record producer Ric Ocasek, musician Max Tundra, television talk-show host Conan O'Brien, comedian and broadcaster Phill Jupitus, and Blixa Bargeld, singer of the German bandEinstürzende Neubauten.^[8]'


The annual pledge drive is coming February 20th - March 4th. You can get some cool swag (like a Dan Melchior designed shot glass - with Glen on it!) if you pledge. Look at it here:


WFMU Marathon Swag!


AND: It's always a good thing to pledge during Brian Turners show (You'll be hearing the craziest, best sounds while you choose your swag!):

Brian Turner

Tuesdays 3pm - 6pm on WFMU 91.1 fm 90.1 fm wfmu.org

http://wfmu.org/playlists/BT 

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And lastly, a friend of mine, David Haas, is a staff writer at The Mesothelioma Cancer Alliance Blog. He's written a great article on the importance of exercise during cancer treatment. 

mesothelioma.com/blog

It's true! I'm trying to exercise as much as possible, and when I do I feel so much better.

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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!