Don't Let Sleeping People Eat

Well, well, well! Is the glass half empty or half full? I'm going to have to lean towards b.{ the half full side today.

For all of you that have fallen on swords, I'm feeling your pain. I now know what it feels like to be skewered like a Shish Kabob. I was only in for a biopsy to have a look-round and see what these spots of 'Activity' were - but my amazing Dr. D sussed 'em out visually. He saw they were cancerous and scooped the offending spots out of me like they were choice scoops of ice cream. Thanks Dr. D!

I have to give nods to my anesthesiology team too! They didn't give me gas this time to put me out, which is the ticket to dreamland for me! I wasn't nauseous one bit coming out of it. The only scary thing about that, was I kept nodding out, mid sentence, and mid chew.   I'd wake up and realize I had been eating a fig newton, or a bite of hamburger and nodded off while the mashed food was trapped between my molars. I was lucky I didn't choke. Moral: Don't Let Sleeping People Eat.

I'm so happy that these cancerous spots didn't get any further down the road than they did. If they were left longer, they could have taken over my lungs, and then where would I be?  I'm very lucky that Dr. D didn't have to take my left lung as previously thought. He was worried that because of the placement of one of the cancers, he would have to take my whole left lung. That didn't happen. That glass is getting fuller on thoughts like that!

I suppose I'll find out what happens for me soon. I'm sure I'll have a new path of treatment. I just really wish I could be part my first Doctor's clinical trial. He ran out of funding and needs about 20K to finish it out. I've been racking my brain on how to raise money for him. I gave him a long list of places where he can apply for grants - I'm sure he's contacted most of them already. I thought about  some kind of Kickstarter program to get the money - but I'd have to think about how to work that one.

Anyway, I'm resting at home spending time with my wonderful loving husband, and sweet little bird who stands on my chest looking me in the face, seeming to say, "Come on mom. Get up, I want to play. Why aren't you getting up? OK I'll just sleep here on your chest, just in case you decide to get up. I love you Mom!"

Ahhh, what a family!

Live Long And Prosper

Well, here I am again to let you all know about yesterday's consultation with Doctor 'D, my Thoracic surgeon.

I had been warned that he had the bedside mannor of Mr. Spock, and when he walked into the waiting room I thought, hmmm, he looks like Spock too! Thin and looming. I was trying to turn on the charm, and trying to get to an ego boost in on this Doctor, before we got down to brass tacks, but I was thrown by the extension of his hand to me. (I once heard a friend of mine say that Dr 'D withdrew his hand from her while she tried to introduce herself at a cocktail party; his hand withered toward his chest and he said he'd 'just washed') I was expecting the same treatment, whereas he actually shook my hand and seemed genuinely concerned about me. I felt at ease and sort of goofy. (During a consultation with a highly regarded Surgeon is not a good time to get goofy.)

I listened to his plan.
He told me how he would make two incisions, one on my side under my arm, and the other under my left breast (that's the good breast!) From there he could take a partial part of the largest inferior lymph node. I asked if he could just take the whole thing? He dryly said if he took the whole node he'd have to take the whole lung. Ha! That's a good one Doc! You really got me on that one Doc! I thought during the long drawn out silence. He was unchanged in his relaxed, lean-backed pose in his chair. I said to him, 'You're joking right?" I was still in a dwindling chuckle when he said dryly, 'The placement of the node wouldn't allow anything but a partial removal. If it turns out to be cancerous then we'll have to talk about the removal of the left lung or an other course of action with your oncologist.' I was like 'What!!!!"

He said the only way to tell if it was cancerous was to do the biopsy. He also said that it wasn't impossible for this thing to be giving me breathing problems.  Of course you all must know what I'm dreaming! I'm dreaming of a prednisone induced inflammation of non cancerous lung nodes! Really wouldn't that be everyones dream in my situation?

So again, it's a wait and see kinda thing again.

After this last lung disease (NOT) thing - I'm going to just try my best to do what ever to keep my mind off this whole cancerous thing and do some painting.

Come Sunday night I'll have to do all the prep work of washing with the most disgusting antibiotic soap soaked in a scratchy cheap pink sponge. No eating, not drinking, no aspirin - Geez I really know the drill.

So here we have me again asking for all your well wishes - they really do seem to work, and I appreciate them greatly. I do know you all make a big difference in how I feel. I gain power and strength from you all. I thank you from the bottom of my heart! Oh and Lung!


Love to you all! I'll keep you posted on the outcome of the biopsy! I should have the news by mid next week.

LOVE!


 On finding a solution to my breathing issues, and my theory of it being prednisone:

Once you have eliminated the impossible, whatever remains, however improbable, must be the truth. --SPOCK, Star Trek (2009)

Also More Originally, Sir Arthur Conan Doyle:

How often have I said to you that when you have eliminated the impossible, whatever remains, however improbable, must be the truth?

Sir Arthur Conan Doyle, (Sherlock Holmes) The Sign of Four, 1890

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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