The Magical Cancer Fund

I see all this pink stuff every October (and now it’s year round) and it’s very disheartening.

Right now it’s serving as a glaring reminder how people are actually making money off of a disease and many of us are completely struggling to make it. If it were not for my family, and the no rent situation, I have no idea how I’d live on the disability I receive every month. And no. I still can’t work yet, so don’t go there.

 

What good is awareness and early detection if once you get cancer – any cancer, not just breast cancer – if you can’t pay for your treatment? Or your medications. Or health insurance. Or even be eligible for health insurance.

Many are so fatigued, they can’t work full time even if they wanted. Many cancers don’t end with the end of treatment. They have side effects from the treatment (which sometime end up killing you). They get secondary cancers. They relapse. Or, in my case, I have gotten several different diseases, most likely as a result from my meds or all the treatment I have had.

Medicaid and Medicare sound so magically delicious, but apparently you end up paying much more out of pocket than when you had private insurance. This came from my hospital from a person that helps patients figure out how they can get any financial aid to pay for coverage. Medicare only pays for a few medications a month and you end up having to pay for supplemental Medicare insurance or special prescription plans.

Your private insurance will only last so long, btw. Cobra max now, I think, is 29 months. I’m ineligible for any type of private insurance other than the Texas High Risk pool. The premium is crazily expensive and you aren’t allowed to be reimbursed for your premium by any hospital or government agency. MD Anderson has covered the majority of my Cobra payments as I qualified for their financial aid. But come Nov 1st, that ends.

The $4 WalmartTargetHEB prescription generally are only for basic types of prescriptions; like high blood pressure, diabetes meds, cholesterol drugs. Not one of my 28 medications are listed on that list.

I have a dear friend who needs a drug for her treatment. Even with Medicare, she has to spend $1600 on her med co-pay. This is more than what she receives from her Social Security disability payment. And Montel Williams rolling his bus past her house will not help pay for her drugs. Neither will the drug companies because she *has* prescription coverage. Yeah. One drug. $1600 a month. That’s really some great coverage.

Pink away. Make millions from and for “the cause.” While so many people who are going through treatment or living with cancer struggle to live our “new lives.”

I don’t have the answer. Even if there was some magical cancer fund, it most certainly would have run out years ago. Awareness. No cure yet. It is too little too late for those of us who have been there. It is depressing to see the cute, pink, ribbon wrapped cancer crap. I don’t buy it because I think it’s horrible. But I also don’t buy it because I don’t have any extra money to buy that shit.

Bitter? Hell yes. I’m not shitting rainbows and riding unicorns today. So before you say, “Be grateful, you’re still breathing,” please just shut up. Go away. I don’t have to be chipper all the time and I’m not going to posture like everything is all right. I do that most days of the year and for today I just want to feel shitty. And bitter. And hate people who are profiting off of a disease right now. Go buy a breast cancer Barbie, some pink batteries and drill a hole in your head with your pink electric drill. When you’re done, you can patch it up with pink bandaids and then eat a rGB yogurt, lick the lid and mail that bacteria laden lid in to Yoexploit.

I would love to be able to give my friend a million dollars so she didn’t have the financial stress to go along with the stress she already has from dealing with her cancer. I would love the magical cancer fun. Don’t you think we have enough stress in our lives already?

I have many reasons that I am grateful. I am alive. I have my family and friends. But the struggle to not give up is getting harder every day. The daily struggle of taking meds, feeling like crap, med side effects and wondering if this cold or this cold or this cold is going to kill me is getting really old.

Livestrong my ass. This “new life” isn’t all it’s cracked up to be. Right now I’m living kind of weak I’d say.

I can do this. I wish someone would start a magical cancer fund. The LLS, Komen, Livestrong, ACS … how many are helping us… I mean really?

No assignment today. I’m feeling grouchy.

$125

Team Zoe is kind of kaput this year. I’ve been so pre-occupied that I let my team down.

Anyone? Bueller?

I know so much has been going on, but I adore the gals at the local chapter so much, that I want to raise a bit more. Zoe’s goals were way too high for this year.

I also was supposed to come up with a memorial moment. I think it’s too late and they probably came up with something else. I had so many ideas, but the walk is on October 25th and anything I wanted to do won’t work now.

Ok. Homework this weekend with the Zkat.

I can do this. I have a few weeks to raise over $7,000.

Your assignment today is to donate anything you can to Team Zoe and/or give me an easy idea for a “memorial moment” for the walk.

Love you internets! Special prayers for my Linda T’s mom who is fighting cancer right now.

 

I have a bad sore throat. Of course I got it the day after I lost my insurance. I am coughing as well and am trying to just rest and take some good meds. I may make mom get a strep throat culture just to see if that may be what I have. It sure feels like it.

Mom is sick as well and so is Zoe.

This is scary.

Uninsured

I’m wrapping myself in bubble wrap.

I will have no insurance from today until November 1st. I’ve been accepted into the Texas High Risk Pool at $671 a month. I’m not eligible to have MD Anderson pay that premium payment as the HRP considers that a conflict of interest. (MD Anderson used to pay my COBRA payment since I qualify for financial aid).

So, I will be scrimping and saving to pay for that until I can apply (or hopefully hear back from) Medicare. $671 is about half of my monthly disability payment. The deb_fund, which might have been able to help out, is on hold until we figure out who it was that stole money from my account (someone who was at my Sis #1’s house stole and wrote checks on that account, which is now closed).

I’m really freaked out about the no insurance thing. I hope nothing happens to me or that I need some other medication in the meantime. I’m not sure how many of you understand the implications of no insurance for me.

“Pray like hell.”

 

McCain’s health plan wouldn’t do me any good. Blegh. Not sure what the answer is, at least until I am able to get back to work. I hate not being able to take care of myself. It’s very frustrating.

I think I’m going to take Zkat to see the chihuahua movie again. It was very very cute!

Moving

I walked during Zoe’s soccer practice. It felt good. Susie’s right. My future plans include moving more.

I can do this. I will make myself do this.

Bubble And Baboon Hearts

I’m exhausted.

[/whinese, apologies in advance]

 

I woke up this morning with an overwhelming sadness. I can’t describe it, but it’s like how you feel when you listen to Nirvana’s Unplugged MTV album.

Last night I made dinner for an old friend I knew from Austin who is visiting and working in San Antonio for a few months. He’s a stand-up comic and is one of the coolest guys I know. He’s been living in NYC and traveling around the country doing stand-up. I don’t think I’ve seen or heard from him in over 14 years or so, but he found me online and we traded info. It was great to see him and catch up, but it just took me back a bit and reminded me of my “before” life. It feels like someone else had that life. That version of me never existed and now I have my life of disease and doctors and meds and pain. It feels so never-ending. There are no future plans. There aren’t any new goals. My joy comes from Zoe. My mission is healing, but as hard as I try, it is not working.

He saw the Slideshow On My MySpace Page and I could tell he was visibly moved. He said to me, “You are one of the strongest people I know.”

I don’t feel strong anymore. I fake it, but I don’t feel it anymore. Not one bit. I’ve been through hell and back, and I just feel weaker now than ever.

I had my checkup yesterday morning at the transplant clinic. I was so tired that I was an hour late. They didn’t give me grief because I am so overwhelmed that I think it radiates off of me.

Blood draw. A drop dripped on my sandal and is now a permanent spot on my favorite pair. Counts are ok, but still having issues keeping my magnesium levels up. My blood counts are normal, but generally on the very low side of normal. I feel like a Zombie. Or a Barbie Zombie (Thanks Amorette, that made me smile) And can I say, coolest Halloween decorations. Ever! Go welcome her new puppy and see her groovy zombie stuff.

Dropped my steroids down to 4mg from 8, which is nice. He said he didn’t like the results from the GI doctor’s office. When the GI folks called me, she told me the doctor wanted me to start taking some medicine 3 times a day (yay, even MORE meds for me to take and pay for) for my stomach symptoms. What those are, I’m not completely sure, but somehow she said my stomach is not working right to digest my food quickly enough.

[aside]
The test, which is called a gastric emptying study (yuck), is where they make you eat these radiated and thoroughly disgusting eggs and dry toast and jam, and then you lay still for an hour while they basically watch you digest your food. I felt like I was going to throw up putrid egg all over the place.

I feel sometimes like I’m going backwards. My health is spiraling downward. Diabetes, Fibromyalgia, GVHD, stomach issues, lack of appetite (I’ve lost 17 lbs in 4 weeks) breathlessness, and my veins in my chest and neck have been damaged from chemo and are narrowed, possibly clotting (CT and ultrasound had different results). They are debating on whether they will put me on blood thinners, but he said he was going to just keep an eye on me for now because blood thinners would be very dangerous to me with my counts.

Last night I went to bed pretty late – after 11pm. I was watching television and started getting major hand cramps. They lasted for over 3 hours. I tried everything. Milk, magnesium pills, water. I have no clue what they are, but it hurts like fuck. It’s like my hands cramp and seize up. I’ve told my doctors, but they never address that issue because there are always more important ones.

I tried everything to make them go away. I wanted to cry, but I was too tired.

Tim phoned me to check in. I think he felt guilty because he was avoiding my calls. I’ve been pretty hurt about our breakup, and I know he gets frustrated because he knows I love him and how sad I am. I know he didn’t intentionally try to hurt me, but I just am so stunned that he isn’t going to be in my future. I finally reached him the other night and told him how much it sucks not to have someone care and check in on you (and yes, I have friends/family that do that, but it’s just kind of not the same.) I write my blog so people know I’m alive. I’m posting, so I’m still breathing, right?

When we talked it was always about the bad stuff going on in his life and he stopped asking anything about how I was doing. I just stopped even talking about it. I feel like a jerk for telling him about that, but it just is that way. He’s so disconnected from me, I don’t even know if I’ll ever see him again. Zoe’s devastated about that. When he called yesterday I was eating dinner and she seemed so happy that he was calling. She ran for the phone and handed it to me, but I didn’t have the heart to answer it. She still thinks he loves me and we are going to get married some day. Ah, my lovely, bird-talking hopeful. I’m sick and tired of being… well you know already.

It always felt like I had someone with me going through all of this, listening and really caring about the outcome. That I had someone I could stop being strong around and just be vulnerable for a little bit. For a long time it was Monkeyboy and then I had Brenda to talk about how afraid I am sometimes. How terrifyingly frightened I am sometimes. Then I met Tim and he and I were so great together. I felt safe and loved and cared about. He was amazing and he loved me. He bought an engagement ring back in April. It was so lovely. So beautiful. I found it one day and it hurt so much that he couldn’t give it to me. He’d lost his heart. Tin man.

I don’t think he sees himself in the same light I do. I adore him. He says I love someone who no longer exists. He’s just gone emotionally void towards me, yet I see how caring and loving he is with his children and friends. It hurts so much not to have his love for me. But it is what it is and it won’t ever change. I know it as well as I know my own heartbeat. I just have such a hard time wrapping my head around how someone who cared and loved me so deeply can just feeling nothing anymore. I miss him so much. I miss his love towards me. I can’t believe how he doesn’t even remember feeling that way, yet I so clearly do. I ache for it. I know it so well. And he is sick of hearing about that. I don’t think he knows just how shocked I still am that our relationship is over. I feel delusional, like it never happened maybe.

I also miss Seattle. I want to go back, but know there is no way in the world I can afford it. I close my eyes and feel the cool breeze and I can so precisely see the trees and the beauty of Seattle. It was so my home when I was there. It felt natural to be there, like I had been there my whole life.

My health insurance runs out tomorrow. There really isn’t a bailout plan in place. Right now it’s prayers that one of the two options comes through as I am “uninsurable.”

That word reminds me of Amorette’s blog where she wrote the phrase “Gravestone payments.”

Gravestone payments.

Those words don’t go together without inducing a bout of nausea.

I can do this. I’m down, sad, in pain, missing my pink, and someone Stole Money From The Deb_fund (more later on that maybe), but I’m here. I’m breathing. I’m living the best I can right at this moment.

You assignment today is to pray to the saint that oversees medical insurance. Who is that? Saint Augustine of Medicarus, Patron Saint of Hopeless, Expensive Medical Tests and Bureaucracy?

Can I just wrap myself in bubble wrap?

For Jeanne S

At Sam’s. Of course it had to be a huMANGous (as Zoe says) Pink for the Cure display.

sams club pink hell.jpg

Comments raging over at Cara Ellison’s Place On Pink Rage. I was told to fuck off by a pregnant lesbian (although seriously I was being facetious with my comment).

Yo Mama!

 

Why my mom is more qualified to be VP than Sarah Palin.

1. She can pronounce nuclear.
2. She had seven kids, few babysitters, no nanny, occasional housekeeper.
3. She has not just one but two college degrees. Got straight A’s in her Master’s program. English.
4. She may be the Antichrist of tact sometimes, but she doesn’t have a mean bone in her body.
5. She never gets stumped on topics. She knows about politics, the military, religion, foreign policy, history, terrorism, art, literature, pop culture, poker, sports, geography, fashion, education, current events, Oprah, health issues, and she can cook!
6. She can speak without saying also, youbetcha, maverick (McCain puts the ick in Mavrick), Joe Sixpack, mooseburger, and no weird facial tick or wink.
7. Her nickname is the “White Tornado.”
8. She kind. And has a sneaky sense of humor and an acute sense of fair play.
9. She’s a great teacher. She’s patient, but won’t let you goof off when it’s time to work.
10. She’s practically indestructible. She was doing laundry with a burst appendix and she thought it was just a case of food poisoning.
11. She’s from Minnesota. Land of lakes, snow, mosquitoes and tough broads! “Those damn Vikings!”
12. She flew from Alaska to Virginia with four kids under the age of ten and everyone survived.
13. Dick Cheney would cower in fear around my mom and Bush would pee his pants if she uttered one, “Nooooooooo” in their general direction.
14. She bakes muffins.

Wait. Zoe’s awake? That little sneaker. Ok. I’ll continue this list later.

I can do this. Right after I tuck the bird-talker in bed.

Your assignment is to add to this list.

Is it Wednesday

Just when I think I can’t be in any more pain.

 

I am.

I can barely walk. I’m miserable even with painkillers. Sleep is the only thing that makes it go away. I feel like my body is shutting down.

I hate this. I want to enjoy life. Not whinese my way through it.

Sluggy Bear

I’m too tired to write much.

 

I’m back in San Antonio. But here is a recap from my Houston visit.

No diagnosis on the neck swelling/pain. Cat scan was normal reading. They mostly concentrated on getting rid of the bronchitis and why I keep having fevers. Had a chest x-ray – all clear (yay)

Had some blood work done. All good, low magnesium, low immunosuppressant level (no bueno)

Met with Dr. Q, my MDA transplant doctor. Tells me that I need to up my magnesium and my tacro (immunosuppressant). I got a rash the day before my appointment. They did a skin biopsy (results not ready yet) to see if it is graft vs. host disease. I got a few stitches, but it wasn’t really painful.

Dr. Q thinks that because I stopped the steroids while my tacro level was so low (since Feb, but hey… they didn’t tell me to take more) that my body may be overwhelmed with graft vs. host issues.

He also got some blood tests to check some muscle level to see if perhaps I have gvh in my muscles, which would explain the extreme shortness of breath and the muscle pain. He also said that I really do need to find an oncologist in San Antonio, and a primary care physician. These might be tricky as I’m about to lose my insurance and have some issues with Medicare (missed some dang deadline – long story). He also told me that Dr. B at the transplant clinic should be my primary transplant doctor and that I should only go to MDA for checkups. This is not sitting well with me as every time I see Dr. B or anyone else at Methodist I end up with some big out of pocket expenses.

I’m pretty frustrated with all of this. I still feel terrible and am living on vicodin. I’m try to be more positive about this and move more, but I feel like my muscles are on fire. I’m just a mess. Truly.

Zoe is great. She’s been so sweet to me. I missed her so much and am trying so hard to feel better so that I can do more things with her. Lots of school, soccer, and girl scout activities coming up that I need to do.

Oh well. I can do this. I have my family and their love.

Your assignment today is to start eating healthy. Be good to yourself. Get a massage. Take a bath. Hug someone.

P.S. Happy belated birthday to my cousin Rebecca. She’s my godmother and is super cool and awesome!!

Yup, She’s a Badass

I think the chicas in my family are just a bunch of badasses!

Sis #2 got her blackbelt – woo!

2834051489_16a12cc397.jpg

(her arm)

She says,

“two years training

25 lbs lighter

BLACK BELT BABY!!!!”

She’s awesome. I’m so proud of her. We had a sort-of surprise party dinner for her Friday night. She had no idea we’d be there, but Mom, Dad, Zoe, Sis #1 and my niece and I were all there. The look of surprise on her face was priceless. She kicked butt – I never doubted she could do it. Sis #2 ROCKS IT!!

A Call From the Bird Talker

For Zoe:

Zoe called me up and was like, “Mom! Listen to this.” Then she proceeded to Arm Pit Fart for about 30 seconds. She found it entirely hilarious.

She’s totally my child.

I remember she was little when she saw something on tv that said if you put spaghetti in your armpit (although then she called them armpins) that you could make a farting noise. She totally tried it too one night. What a mess.

 

I have 3 doctor appointments tomorrow. Nine, 9:30 and 1:30. I emailed them today and said that I’m still having low grade fevers. I am just losing faith that they can figure out what’s wrong with me.

I don’t even want to think about the insurance mess I’m fixin to be in. Sis #1 is trying to help me figure it all out, so I’m not going to worry about it.

I can do this. It’s been a long week of missing my Zoester.

Your assignment today is to try to do something immature and childish – like armpit fart. Or do a cartwheel. Play with Play Doh or squirt a water gun. Zoe just made me crack up tonight. I want to see that squeezer so bad.