Wednesday, February 29, 2012

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!

Love to everyone!

Friday, February 24, 2012

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!

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.


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!

Thursday, February 16, 2012

Go Away Cancer! Everyone Hates You!



What get's smaller and shivers in fear?



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!

Pledge to the WFMU Marathon!

Saturday, February 11, 2012

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!


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

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 MangumKurt Cobain,[6] screenwriter/director Ethan CoenMAKE magazine editor-in-chief andBoing Boing co-founder Mark FrauenfelderLed Zeppelin lead singer Robert Plant, musician Suzanne Vega, artist Cindy Sherman, indie rock superstar Ted LeoSonic Youthguitarists Lee Ranaldo[7] and Thurston Moore, comic book artist and writer Evan Dorkin, film director, producer and actor Kevin Smith, musician MobyThe 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 bandEinst├╝rzende 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


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. 

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