New Cancer Therapy Could Give Hope To 'Incurable' Patients
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New Cancer Therapy Could Give Hope To 'Incurable' Patients
I'm proud of you
The phrase “I’m proud of you” is said in error, I believe, way too often. I saw a friend say it to another friend on Facebook today, because she climbed a mountain this morning despite all the wine she’d drunk the night before.
To be proud of someone means you are taking pride in what they’ve accomplished. But who is really allowed to take pride in our accomplishments? To be proud means you have some kind of ownership in the results worthy of your pride. It’s perfectly normal for our parents to take pride in us because hell, they created us! They have some kind of ownership in what we do. It’s also appropriate for our teachers and coaches to say they are proud of our success, because they helped us get there.
The most appropriate and important person to be proud of is ourselves. No one has more ownership in what I achieve than I do. I try to make myself proud every day.
When a friend or acquaintance tells you they are proud, doesn’t it feel kind of condescending? How can they have pride when they have absolutely nothing to do with what happened? I especially hate it when someone I just met says they are proud of me when they see how well I can do something. They are obviously mistaking pride with being impressed or appreciative. There is a big difference between those feelings, and it has to do with ownership.
And if not ownership, the person needs to at least have been very closely involved with or witness to the growth we go through to achieve success. When my best friend tells me she’s proud of me for making a really tough decision, it doesn’t feel wrong to hear that. My best friend has watched me go through all the ups and downs in my life for 23+ years, and she can feel pride because she’s been a huge part of my journey.
I think most people throw the “I’m proud of you” phrase around too flippantly without realizing its meaning. Next time, say you are impressed, amazed or inspired but not proud.
When anyone met Schwa he would say, “Hi, I’m Lorenzo Esteban Mulano delgado del Mundo del Toro del Pinche Fucking Fuego, de la Paz de la Esparanza….” He had as many names as Daenarys Targaryen.
When I met Schwa, I was 25 years old. He was 37. My roommates and I had just come home from a Cake concert and were coming down from the LSD we’d taken. It was 1996. Exactly 20 years ago! Our friend Michael showed up around 2am with Schwa in tow. They had met at a dance club that night. Schwa was dressed in drag and I was trying to put wigs on him, but he wasn’t into that idea.
I was so immediately taken by him and when he left I wondered if I’d ever see him again. The very next day, however, he showed up at our house with a camera. He wanted to take pictures of our house. We were painting murals all over the walls because our landlord was going to demolish it and therefore allowed our painting.
From then on, Schwa would quite often show up at our house unannounced and usually after the bars closed because he knew we’d be awake and up to our usual antics, which included painting, smoking pot, playing music and Jenga and video taping it all.
I don’t remember when, but at some point I started to consider him one of my closest friends. We would talk on the phone for hours and he always had interesting stories to tell. He was a high school English teacher and he kept his cross dressing a secret from a lot of people including his family.
He was troubled and drank a lot, but he always gave the best advice and knew me better than almost all of my friends. Every year I threw him a big birthday party, with a theme related to his age. We celebrated the number 4, when he turned 44. Everyone had to bring him 4 things. And I made him a 4 tiered cake. For his 45th, I had a Schwa'k Hop, and we all dressed like it was 1959, the year he was born. I had a DJ who only spun 45 records, and we drank Colt 45s. I made a bunch of coasters that looked like little 45 records. When I moved to Seattle at the beginning of 2007, he and I had a long talk and shed some tears. We were really going to miss each other.
He did come to visit a couple of times. Another one of his closest friends lived in Seattle too. He and his family once took an Alaskan cruise that departed from Seattle so I got to see him then. In 2009, I was offered a job back in Denver that would pay very well. I thought I would never move back to Denver, but my mother was sick and this was a great job opportunity. Plus, I’d be reunited with my favorite human being next to my mother, Schwa.
My mom and Schwa were my two closest confidants. They both knew me so well but in different ways. I was so happy to be able to start throwing birthday parties for Schwa again too. I was bummed to have missed his 50th. But on his 52nd, I threw him a “52 Card Pick Up” themed party, and everyone dressed up in card related costumes. It was a fantastic celebration, but it was the last party I’d ever throw for him.
Over the next year, his drinking got out of control. His girlfriend of 8 years couldn’t stand him any more. She kept telling me that she hated him and couldn’t even stand to look at him. But she knew that breaking up with him might kill him. He didn’t handle breakups well at all. I saw him struggle through a couple of them over the years, and he would get extremely depressed.
Now he was in his 50s. His cross dressing days were over. He struggled with his identity. He hated the idea of being an old man, especially on his own without his girlfriend. I tried as best I could to show him that he would be ok without her, and that he’d always have me and other friends who loved him. He was also an incredible song writer and musician, and that would never change. But he was heading down a dark tunnel and no one could pull him out.
11 days after his 53rd birthday, he shot himself in the head. For the 6 months prior to that, he had pushed away every one of his closest friends. It was obvious he was preparing for the end. 4 months before he died, in his true dramatic style, his plan was to go to Hawaii and take a helicopter ride over the volcano and jump into it. But he couldn’t do it, I heard because there was a little boy in the helicopter too.
He pushed me away and wouldn’t answer my phone calls. But I kept leaving messages telling him I loved him and missed him, to no avail. He was done with me, because I was trying to help him get away from his girlfriend who kept declaring to me that she couldn’t stand him. I felt bad for her, because she knew that breaking up with him meant he would kill himself. And that turned out to be exactly what happened. After she told him for the umpteenth time they were only going to be friends, he shot himself in her driveway.
Schwa was a force of nature, and his death left a giant hole in my life. He was my number 2 confidant after my mother. He was one of the main reasons I moved back to Denver. He and I had dreams of making costumes together and doing photo shoots. He and I could have accomplished so much together.
My mother passed away 9 months later. Needless to say, my self rebuilding project has been immense. I’m still not done.
Why can't dogs live forever?
My best friend has a 13 year old Newfoundland who is experiencing severe arthritic pain and takes major amounts of pain meds. It's getting worse every day. She struggles with the idea of putting her down and out of her misery. I mean, when do you know it's the right time? I cannot imagine what it must feel like to hope your dog dies so you don't have to kill her.
Knowing I would lose my hair soon from chemo, I decided to have some fun while I still had hair to play with. đź’–
I'm bald now.
Trump doesn't want to run vs Bernie
Ever since Trump got the delegates he needed to be the republican candidate, he's done practically nothing to further his campaign. Meanwhile, Hillary has been placing anti-Trump ads all over TV. Polls are showing Hillary winning by only a few points though, where you'd think it would be a lot more. Trump does absolutely nothing, and still only slightly trails Hillary. I think Trump is doing this on purpose between now and the convention. He doesn't want any super delegates switching over to Bernie at the convention, which they might if they saw Hillary trailing in the polls. After the convention, assuming Hilary becomes the nominee, that's when Trump will start up his campaign again and the poll numbers will flip, or at least he hopes they will. I'm scared to death of a Trump presidency. I also think he can beat Hilary much more easily than he could Bernie. As much as I hate to admit it, a lot of men in this country aren't ready for a woman president. Trump does absolutely nothing, and still only slightly trails Hillary. Think about it. He's smart and manipulative.
Unexpected help
I have a lot of friends, but only a few I am close enough to that I feel comfortable asking for help with the various cancer related issues I have. I had surgery last week, and the person I consider my best friend didn't offer to help me at all after I came home. The other person who I'm closest with is touring with a band in Europe right now. I was really worried that I'd be all alone and unable to care for myself, but then my friend R called to say she was coming to stay with me for 3 days. I was totally surprised by this because she isn't my closest friend in the world. But she came over and cleaned my house and went to the grocery store and the pharmacy and cooked for me. She really came to my rescue and made me feel loved. Since my cancer diagnosis, I have spent the vast majority of my time alone. At first, people were flocking to me and I had so many offers I was turning down help, but after the initial round of chemo was over and I was cancer free for 6 months, people kind of drifted away. When my cancer returned and I had my 2nd surgery, I had to seek out helpers. And now, 2 years later, I have friends who are saying things like, "it's amazing you're still alive, I thought you'd be dead by now." I can't help but feel like people have written me off and chosen to spend their time with only healthy people. I've been very lonely lately, so it was a huge and welcome surprise when R offered to stay with me this time around. She was suggesting I leave post it notes on the dishwasher saying "clean" and "dirty" for all the people that will be coming and going, helping me over the next month. I had to tell her that no one else is coming. I guess everyone thinks I have a ton of help, so they are all staying away? I don't know. I'm just grateful for R and finally feeling loved.
Looks aren't everything
When I was a little girl, I was embarrassed by my mother. She was very loving and smart and talented. She was an excellent mother, but I thought she was ugly. She never wore any makeup, she didn’t have pierced ears, and she had a short haircut peppered with grey hairs. Once a mechanic called my mom “sir.” She just didn’t believe in getting “dolled up” or trying to be glamorous. She was a tomboy to the extreme.
I didn’t want the other kids to see me with my mom. I thought she was so ugly. She had a big nose and a weak chin. She was kind of goofy looking. It bothered me that she seemed to be perfectly fine with the way she looked.
As I got older, I got over my embarrassment. My mother was pretty awesome after all. She died 3.5 years ago, and I miss her terribly. Lately I’ve been going through old photos from my childhood. I posted a bunch to my Facebook the other day. Everyone commented that I look exactly like my mother. In fact, I do look so much like my mom, it’s uncanny. And I hate it.
I know I’m not very pretty, but when people tell me I look exactly like my mom, it makes me feel ugly. My face is unattractive, I admit. I wear makeup and color my hair and try to improve my looks as much as possible, but my nose is even bigger than my mom’s was and my chin is even weaker. Now that I’ve lost all my hair from chemo, I’m about as ugly as it gets.
Ugly women have a different perspective of the world than pretty ones do. Men never hit on ugly women like me. It’s weird because I still have eyes and a sense of who I’m attracted to. In fact, as an artist, I’m very focused on looks. I like to have attractive things around me all the time, so it’s hard to lower my standards of attractiveness in men to match that of my own. I realize that super sexy men are out of my league, but I’m not attracted to men who are in my league. It’s a problem!
Alone
I suppose I only have myself to blame, but I am definitely alone in my battle with cancer. Everyone else in the chemo room has a loved one sitting with them. I used to have my dad visit me here, but he’s gone now.
K spent the night last night and talked a lot about his friend T, how he hopes they can live together one day and she is officially his sister. There is a concert he’s working in October. He knows I will want to go if I’m healthy enough. Last night he told me that he told T if she wants to go, she can stay with him and they will go to his favorite restaurant together. I reminded him that I plan to go and he was like, oh well, you can come to the restaurant too. But it wasn’t like he was trying to get me to go by offering a place to stay like he did with T. When I told him I had chemo at 10am this morning, I hoped he would offer to come with me, but he didn’t. He wanted to go meet a friend for lunch instead. The situation with K would be different if I hadn’t pushed him away and said we can only be friends.
Everyone I know has someone else in their life who is more important than I am. I wish I was someone’s best friend. I wish I had people who care enough to come to my chemo with me.
I really only have myself to blame though because I push people away. Everyone who has attempted to get close to me, I end up pushing them away because they annoy me somehow. And now I am battling cancer all by myself. When I start to feel sorry for myself, I remind myself that I created this world. It doesn’t help the situation so much as explain why it is this way. I’m not sure how to remedy it.
One day I’m going to have to pay someone to take care of me. Most people have a spouse or children to do that, but since I’m all alone, I’m going to have to hire a caretaker. I guess it seems pathetic, but it is my reality.
Psychic medium
I scheduled an hour appointment with a psychic medium for next week. She sent me a list of things I can do to prep for the meeting. One of the things she asked me to do was to start talking to the “spirits” and let them know this is happening. She could end up receiving communication from just about anyone I’ve known who died, especially if they are/were particularly outgoing.
I, of course, really want to hear from my mother, but with her request in mind, I’m going to make a list of everyone close to me who’s died.
Mom - really hoping you’ll come through. It’s been almost 3.5 years. Do you know I have cancer? Do you know I have a dog? Do you know my concerns about money and the future?
Dad - I’m guessing you’ll come through since you lived here in this house with me at the end. It’s only been almost 1.5 years and I know you are more familiar with my present situation. Who should I bequeath the house to?
Jason - I’m so sorry I ever referred to you as “blargh.” I liked you very much, even though you annoyed me at times. Pretty much everyone annoys me at times. But you died too soon, and you were quite boisterous, so I won’t be surprised if you come through.
Lawrence - you were my favorite person in the whole wide world, but you were mentally ill at the end. I hope you’ve forgiven me for coming across insensitive. I only loved you and wanted you to get away from Becky. I doubt you will you come through because you were so mad at me at the end and you killed yourself. Why would you try to reach out?
Brett - I wonder if you will make an appearance. Our friendship was short. You died too young. People say you gave up. I’d love to hear from you though. I miss your brilliant mind and quirkiness.
Aunt Emmy - maybe? Just putting it out there.
Uncle Peter - since I’m not speaking to your son, I wouldn’t be surprised to hear from you.
Aunt Marilyn - since you died of ovarian cancer, and we have that in common, maybe you’ll say hi?
Kidney disease
I believe my kidneys are struggling to do what they are meant to do. I have a tumor pressing on my ureter which connects the kidney to the bladder. A CT scan discovered this a month ago. They told me I needed to put a stent in. I kept thinking chemo would shrink the tumor and the problem would go away. And it seemed like the problem was going away, but lately I’m noticing some strange things.
The kidney pain has come back, my skin is exceptionally dry, my eyes are getting puffy and I don’t think I’m pissing enough. The strange thing though is now it’s my left kidney that hurts and not my right like before.
I’m throwing an Easter party in three days. If I take myself to the ER tomorrow, maybe they can figure it all out and fix it by either putting a stent in or something else, all in time to get home to throw a party. Because you know, throwing parties is really the most important thing. Screw kidney failure, I wanna dance!
2012 was the worst year of my life. It’s crazy because 2011 was quite possibly the best year of my life. 2011 was my first and only Burning Man. In 2011, I turned 40 and as a present to myself I went fishing in the Atlantic with Dean muthafuckin Ween. Immediately afterward I spent the weekend in NYC with 8 of my closest friends and we saw The Book of Mormon together. In 2011, I still liked my job and was making good money, and I didn’t have cancer.
Then came 2012. My best friend and #2 confidant (2nd to my mother) Lawrence shot himself in the head. I knew he was suicidal and tried over and over again to get through to him, but he cut everyone out of his life that knew him well enough to talk him out of it.
A few months later in April 2012, my uncle died. This man was like a father to my mother, and it was the end of an era losing him.
In May 2012, my favorite band, Ween, who is more than just a band to me, broke up. They were a lifestyle, and they were my everything musically. I’d travelled to many states to see them perform, and I even have a tattoo of the Boognish, my only tattoo. It broke my heart to think I’d seen their last show. I’d seen them 6 times in 2011 alone.
Then on October 9, 2012, my mother and #1 confidant died. She had been suffering from scleroderma and it finally took her life. It was the most devastating day of my life. My mother was my rock. She was what kept me grounded. She was my doctor, my voice of reason and my best friend. When I moved back to Denver from Seattle, it was to be closer to my mother and my friend Lawrence, and now they were both gone. I felt so alone.
So I became a depressed alcoholic and didn’t want to leave my bedroom for months. Not long after that, my dad was diagnosed with lung cancer, which was like turning the knife in the wound. I lost my job because I was pretty much a shell of a human being, and just couldn’t do it any longer. My cousin was my boss, and he and I had a huge fight and are no longer speaking to one another. A few of my other friendships suffered during that time as well.
Then I got cancer and as I’ve described in a previous post, my depression magically went away. I’ve been doing pretty well emotionally the last couple of years. Losing my dad was very sad last year, but I’m a much stronger person now and I know how to handle loss like that.
Now it is 2016 and Ween has reunited. I’d been concerned that I wouldn’t live long enough to see their reunion. But not only did they reunite, they chose to perform their reunion shows just miles from my house. The shows were this past weekend and I went to all three. I postponed my next round of chemo so that I’d be strong enough to watch from the floor standing in a crowd three nights in a row. It was rough because one of my tumors is causing havoc (and pain) to my kidney, but I’d much rather watch Ween on painkillers than in a chemo haze.
At the 3rd and final show, a new friend and fellow Ween fan, found me a spot on the railing in the front row where I managed to stay for the whole show. That railing is the only thing that kept me upright. From that vantage point I could see Dean and Gene and Dave and Claude and Glenn up close and personal. Their facial expressions, their stage banter, the sweat on their brows. I witnessed as they soaked in all the love from the crowd and played their hearts out to us. You could tell they were just as happy as we were that they were performing together again. It was beautiful. There was so much love in the room you could taste it. And it was on Valentine’s Day! This weekend was the most magical three days of my life. It represents our (mine and Ween’s) survival through tough times and the loss of loved ones. Like me, they lost a lot of friends and family in the last few years. It was a tough time for all of us, but we trudged through the darkness and we’ve made it out on the other side in one piece. Love has prevailed and I ain’t dead yet!!
Aye aye aye, sharpen your boot and bludgeon your eye.
Thinking of doing this to the hair I have left!
3 years ago my best friend was still trying to figure out who I was while I placed him in weird positions and took copious amounts of photos.
Scams
I received a phone call today from an 800 number and as usual, I didn’t answer the phone. They left a voice mail but the beginning was cut off and all I heard was “to resolve the problem, please call 855-539-xxxx.”
Since I’m waiting to hear back from my insurance company, I thought it might be them calling me, so I called the number. A man with a thick accent answered the phone.
Me: I received a message from this number and I’m returning the call
Him: Yes, I am with technical support for your computer and want to inform you that your Windows license has expired.
Me: You are so full of shit because I don’t own a computer. (Except I do. He just doesn’t know that.)
Him: Oh ok. (Long pause.) Oh no, I’m calling for Jenny. Is Jenny there?
Me: Haha, now you’re just trying to cover your tracks dude. Good luck!
Now that I have their number, I’d really like to scam him back. I’m thinking about calling him and telling him I’m with the IRS or the FBI or computer tech support or…
I ❤️ Obamacare
One of the biggest if not THE most significant thing about Obamacare is the elimination of pre-existing conditions affecting your coverage. When Obamacare began at the beginning of 2014, it became possible for anyone with a chronic illness or in my case, cancer, to receive affordable healthcare. In making this change, Obamacare eliminated the concept of insurance being involved in healthcare. Insurance provides protection against a possible eventuality, but if that possible eventuality becomes reality, then insurance is no longer insurance and simply becomes affordable healthcare. I'm scared to death of all of these republican presidential candidates who say they will repeal Obamacare. If they take away this key component of Obamacare, then they are basically giving me a death sentence. I had no insurance when I was diagnosed with cancer, but I was able to enroll in affordable healthcare just days before I had major surgery to remove giant tumors in my abdomen and a month before beginning very expensive chemotherapy. I need Obamacare to remain in tact if I'm going to continue receiving healthcare and therefore continue to live.