Cancer On My Mind

Yes, Literally! A 4mm spot has appeared in my Cerebellum! I have been trying desperately to get into a Clinical Trial for weeks and weeks- and it seems like every step of the way I've had something come up that looks like it will knock me out right off the bat. It seemed like Tampa and Philly were the only trials coming along nicely, but I went over the trial managers head at Tampa while she was on vacation and talked directly to the drug company. After reviewing my case they decided I wouldn't be a good candidate. I was holding out for a trial in Philly - but the Philly trial wanted something that was easy to biopsy. I have cancer deep in the cavity of my chest, lungs and possibly in my small intestine. I also have a small lump on my arm, so I went to the clinic to have it biopsied. It was benign, Hooray?*~##@*! But this time I wanted it to be cancer- because it was a requirement to get something biopsied to get on the trial!

Anyway, after the biopsy I was chatting with my Doctor about how I'd been feeling - tired, clumsy, overheated- (driving around without air conditioning) and I've even been dropping things as well. My typing skills have gone way down the pan. My doctor's words were 'Uh Ho!' and, he scheduled me for a Brain MRI.
I thought nothing of it at the time. I ran right out to fax some papers over to NYU thinking I'll be in NY in a few weeks! My oncologist had told me he wanted me to go under the care of Dr Anna Pavlick @ NYU, as she is a melanoma specialist. So while I'm out faxing NYU some green-light papers - Dr Morse is emailing me that I have a 4mm Brain Tumor. You can see how this puts a damper on my plan!

Today I had to have head mask made for me out of plastic mesh. I had been freaking out about it all day - the hot plastic was then laid on my face and pushed around until it formed to my features. I then laid there until it hardened. I felt trapped!!!! Then a damn FLY started landing on me, dancing around on my legs and then buzzing around my vice-gripped face. GET IT OFF ME!!!!

What I had been fearing for the last few days, was indeed horrible! Thank God I had my Rooster by my side making jokes and reading me his hospital observation poetry!

This also sums up the way I felt -

That last line should be -"Are You Caught Forever By The Curse Of The MRI"

I go in to have my brain box zapped on Tuesday the 24th! YIKES!

I'll let everyone know how it goes!

On a much better note I have a NEW Tape out called, Moon Mountain by me, Letha Rodman Melchior, on the great Label Called

ROBERT & LEOPOLD

I am so happy to have these works out in the world - working on this collection gave me something to look forward to and to keep my mind from going into dark places. 

Thank you to you Ryan Martin for making it happen.

Please get yours at Robert and Leopolds website.

There are so many fantastic artists on that label, and I am honored to be among them!

Full on War!

As you know, if you've been following this blog, my breast cancer seems to be in remission - and that has been a great relief. But, the rest of my body is still deep in the trenches of war, doing it's best to hold the fort. Since my last operation on March 12th, a bit of cancer that is 1mm bigger than the last bit that was extracted has grown in it's place; and in addition there are new spots on my lungs lower lobe, and it is also likely cancer has grown in my small intestine. It just wasn't as defined as the other spots. There are also some lumps under my skin, one below my elbow and one above my left knee. They just didn't make it into the frame of the PET, so they are inconclusive lumps. I have to keep a watchful eye on them.


I have spent the last two weeks diligently calling every clinical trial I could get numbers for. I had made it my job to not take no for an answer. I would not give up looking even though I kept getting turned down or "excluded" from these trials over and over again because of my history of breast cancer. 27 of the 30 trials could not hear my boobs cries of victory over breast cancer, and turned their backs on me. I have the chance to join only three. One in Philly, one in Tampa and one in NY. I still have hoops to jump through for each one of these trials and I don't know which one will be The One that I get 100% accepted into.

I'm incredibly frightened by the thought of leaving my home and my hospital. I'm so happy with my team here and the new cancer center is something out of the future, it's just stunning. Tears welled up as I shook 'Ol' Doc Onc's' hand. I felt I wanted to hang on to his limb and climb up to the safety around his neck and look down on the uncharted waters that are about to swell up and pull me in. I don't think he'd understand that I was only trying to cling to the things I'm familiar with. I don't want to leave my care here at Duke - but he said that what Duke has to offer me at this point is a poor relation to what I can get at these other facilities. Earlier I freaked him out by asking, "What if I did nothing? How long would I last?" He just about fell out of his chair. What if you did nothing?!!!!" You can't do that!!!!" I suppose I was just trying to suss out how quickly my disease would advance if I didn't do any kind of treatment. He said a year or there abouts. I need more time than that. I don't want to leave my beautiful wonderful husband, my sweet little bird (who is naughty and bites). I don't want to leave my friends and memories. I don't want to miss out on what everyone is doing.  I would miss checking into facebook! I have to do one of these trials.

With taking these combo trial drugs I can easily squeeze out another two years or maybe even more.  I'll have side effects, such as photosensitivity (great for looking out on that beautiful Tampa Bay Sun!) The feeling of bruised feet and achey joints. If I think back, I suppose I had it worse during my other treatments.

The rest of this week I'll be trying to get all the forms, fill them out, cross my t's and dot my i's, and see what the luck of the draw is. I don't know where I'll end up.

Living with uncertainty is difficult enough - but when cancer takes away the things you know best and trades it out for something you don't know at all - it really shakes you up.


I'll keep you all posted.

Love,
Letha

NED In The Boob Department!!

Thanks for the scarf, hanky, and bag Diane and Joel!

I've been in a holding pattern for what feels like a long, long time. Three months to be exact! And all pretty much free of fear, and certainly minus heavy duty mind twisting appointments. Every appointment I've had these three months has been pretty much for mundane checkups that all normal people have.  It's been a great holiday!!!!  And I have to share with everyone that I have been given a certified letter stating that I have no evidence of breast cancer!!!  YES, IT'S TRUE!!! (NED = "no evidence of disease")  During my mammogram I wasn't really aware of how nervous I was.  I suppose deep down I had fleeting thoughts of being told I'd have to have a double mastectomy. It's really hard to not let these thoughts come into your head. I was so relieved when I was handed the results, exhaustion came over me in a wave. My breast cancer has always taken a second seat to my melanoma, but in an other dark thought I had; people were shaking their heads, "It's a shame, it was the breast cancer that got her in the end." Well now, I don't even have to think about it! That makes me so happy!!!! No more breast cancer for meeeeeee!!!!!!!!

Now I have to go in for my PET, the date scheduled is on June 26th - a month from now. I don't think I can wait that long; so I'm having my date moved up. I would love a clear scan. I would normally wait for the date to come up, but I've been feeling ever so slightly tight in my chest and remember all too well the feeling I had before my chest surgery last March. It may just be nerves and my fears shaken from the good news on the breast front, but I've also noticed very small mounds under my skin on my thigh and one on my arm right below the elbow. Are these just fatty pockets? Are they swollen glands? Are they cancer? I hate living in fear! I just want to know. I don't think of myself as someone that needs to have something wrong. You know what I mean. But this cancer makes it where I'm beginning to lose my footing on feeling secure. Am I just looking for things to be wrong because it's been too long without any crazy horrible events? I don't think so! Gawd, I hate cancer!!!!

I have to say also how upset I was over the death of Adam Yauch. It just felt so close, though I didn't know him personally. I had been to a few Beastie Boy shows and have met him in passing at a party, but I was so upset by his death. I had an uncontrollable sobbing episode. I felt so sad for days afterwards. It was also on the heels of the passing of David Doernberg, someone I had met, but didn't really know. Some how through facebook I had been wandering around through friends of friends and remembered him. What had he been up to? He had a food blog. Oh! So, I went to check it out. There I learned he had just died of cancer, and there I learned how his food blog and been upstaged and taken over by his fight with cancer. I was so saddened, cancer seemed to be creeping into peoples lives in my periphery. It just seems that people shouldn't have to die of cancer these days. It's so scary that people still do. I usually concentrate on the survival rates of people - I don't take in the deaths. I usually look the other way. But these two deaths I couldn't overlook. I feel so much for the families and friends of these people. I also feel for the people who are struggling at this moment with their own cancer, and the horrible choices they have to make, the waiting for results and treatments. Feeling lost and alone like no one cares - it is all so hard and emotionally draining. I feel the pain of the people who love and care for these people that have cancer. It's so hard to keep up that positive outlook.

I plan on keeping my positive outlook and will keep myself busy painting, doing music and videos; and in general just try to keep living a good life with my loving husband and sweet feisty bird, Glen.


I want to thank every one for their interest in me and my blog. I'm getting ever so close to 10,000 hits on this blog. That is an incredible thing! Thank you all for helping me to keep going forward!


Love!

This is one of my videos I made for my experimental music under the name Tretetam.

It's called Leon Hills and was shot in Burlington, NC.  I've been playing my clarinet!

Happy Hospital Funtime Blog Commandeered by Hubbo

Dear Readers -

Dan Melchior Rodman, Letha's husband here -


I just wanted to write and say thank you to everyone who has contributed to Letha's fund over the last year or so. It has helped us SO MUCH. I really don't know what we would have done without your help. You have gone above and beyond, and I want to thank you from the bottom of my heart.

I am also extremely grateful to all the people who have continued to follow Letha's fantastically well written blog. It gives her great comfort to know that so many people care about her, and are interested in her progress.


Things have been pretty tough here at times, but we have managed to keep going, and keep a positive attitude with your help.


Thanks again,

Dan Melchior Rodman

While in a Holding Pattern Sit Tight and Buckled

Hello all my wonderful friends from all stages of my wonderful life! I will not be dying in the next three months - And hopefully no time soon there after!!!  I saw my Oncologist as well as my Theoretic Surgeon  and I was told that the surgery went very well. And more importantly, that they feel they got all there was of the lima bean spots, sprouting deep inside my chest. It's a bit too soon to tell - but I think that my breathing has improved without the offending growths. I'll keep my eye out on the prednisone as a source, if I get back to feeling breathless. I'm still on steroids - but take them at night along with my sleeping pills so I get a good night's sleep.

I'm very happy to have these three months of mostly carefree living. I'm going to try to make the most of it.  It's well deserved after a solid year and three months of frightening operations, and treatments. I tallied up my visits to the clinic for last year. Total: 108 visits, And 6 hospital stays for operations or treatments. That's just crazy! The next Pet Scan will be a scary one, for if any 'Activity' is found - then I'm back on the treatment train again with Interleukin -2, but since I've had it last they've changed the dosing to be easier on the patients. I'm gonna do my best to heal up completely from this last operation and get back to being as close to 'Normal' as I can be. I feel giddy and as though I'm going on a Holiday! Though I don't have to pack my bags - because I'm already here!

Spring has Sprung! I don't have to wear a sweatshirt, I can sit in the park and paint. I can get back to riding my bike!  There are so many things that I can do!

I want to thank, my husband Dan, for being with me every step of the way - He will always be my 'Rooster.' And I want to thank all the people I have relied on for emotional support. I want to thank all the great hearted people that have helped in every other way. I don't know what I would have done without you all. You have keept my spirits up and helped me retain the 'I can do it!" attitude when things got rough.

I'm very lucky!

Thank you all! Let's all make this the best summer - Ever!

While in a Holding Pattern Sit Tight and Buckled - Or Better - Do Everything You Possibly Can To Keep Yourself Happy!

Love to everyone!
Letha

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