Listen up and HEAR me please

I need you all to LISTEN and HEAR what I am saying. Many of you seem to be missing a very valuable part.

Yes, I am POSITIVE I am going to beat the cancer. THAT IS NOT WHAT THE PET SCAN RESULTS ARE ENTIRELY FOR.I'm looking for my 5 year survival rate, friends. And don't tell me the statistics are there to be broken. THEY ARE THERE FOR A REASON. So LISTEN TO THE HARSH REALITY that I have had to face and hold my hand for the time we have left together. Hopefully we have five years.

 

The survival rate is ABOUT 65% BUT GOES DOWN FROM THERE because

-          I have/had bulky masses

-          I have/had  stage 4

-          I have/had type B

-          I have low white blood cell counts

-          I am anemic

 

About the only thing that I have going for me is that I am below 45 years of age and not male.

 

I am not throwing in the towel.

 

I am not telling you all to no longer have hope. Please continue to have hope. But stop telling me to not look at statistics. They are there for a reason.

 

I just need you all to realize that just because they get rid of the cancer, doesn’t mean my fight is over.

 

My fight is far from over.  Fight or die.

The waiting is the hardest part

Patience is not a strong point of mine. I am fairly impatient and I FOCUS when something is extremely important to me.

 

One of the hardest parts of cancer is the constant waiting game.

 

Holy shit you have this huge tumor?!? Quick! Quick! Reschedule your whole life for a test you have to do tomorrow.. EMERGENCY! EMERGENCY!

 

But for the results…. You wait. Oh. My. God. Do you wait.  

 

It is a constant hurry up and wait. Period. There is no rushing medical science. It’s not like my FUCKING LIFE IS ON HOLD WHILE YOU FIGURE THIS SHIT OUT.

 

I have a mole on my face. And it’s grown. And it looks funky. So I asked my oncologist about it.  It’s been 6 fucking weeks since I talked to my oncologist about it. Every two weeks, “Hey doc. They haven’t called. I really would like to know if this is melanoma.” Still no call.

 

What the flying pig fuck is going on? Yes, I realize I already have cancer but the treatment for melanoma is different. I just want the stupid thing biopsied. Screw you children with pimples on your face. I have a fucking thing growing on my fucking face!

 

And, of course, you don’t want to be rude. Then you get pushed to the end of the line. Dying or not. Sweetness gets you every where. Except quicker results.

 

It never gets easier. Waiting for the results when I was first diagnosed was excruciating. Knowing that I have to have tests next week, is excruciating.  Then I have to wait until Friday for the results. I mean, really. This is my life you are dealing with. And sure, while to you I only have Stage 4 Hodgkins Lymphoma. To me, I have FUCKING CANCER and I’d like to know if this poison is working or if I have just been wasting my time. I want to know how much time I have left. I want to know if this shit is going to come back. This isn’t just about the right now, doc. It’s about the future.

 

The only thing I have learned to do is to just let go. There are some things I just cannot control. The ‘speed’ of the test results; sure I would like them faster. But I would rather them be accurate.

 

So to my dear friends who are also enduring the HURRY UP and waiiiiiittttt, I only have this sage advice. You are not alone. The waiting is hard for everyone else as well. I am lucky to have my job to keep me occupied. Go for a walk, if you can. Have people come by and talk to you about anything except cancer. We are in this together.

 

Now I wait for my call…

The 'F' Word - Fundraising

Cancer is expensive. No matter how good your insurance is there is always money leaking from your pockets. First you meet the deductible. Next, you are left with a percentage of the treatments. Then, every time you visit a doctor, there is co-pay. On top of that hole in your pocket is the medicine. You also have to include the gas to and from the appointments. Not to mention the work you miss.

 

First, no one wants to have to go through this. It’s not like I woke up one day and said.. Cancer sounds like fun! My life is incredibly stable. Let’s throw a disease in there! Woooooo. If you think I asked for a cancer, you are insane. Stupid disease has taken over my life.

 

Secondly, it’s not like I want to ask for help. If you look at my income vs. cancer treatments there is NO WAY IN HELL I could do this alone. Quite a few of you think I have this bucket of cash stashed somewhere. It’s not true. Yes, I have money for my treatments. I have had quite a few donations. I am blessed with some incredible people and their incredible generosity. The treatments happen every two weeks, folks. So the co-pays, the gas money, the refills happen every two weeks. I really cannot do this on my own. Shit, I feel uncomfortable even posting about this.

 

Did you know that medical billing doesn’t have to be mailed out right away? They have up to six months to bill you? I didn’t either.

 

So yes, you are probably sick of my link to my site. Worry not. Just do not donate.

 

I am tired of asking and I still have through September to keep doing this. So yes, I will still ask for help. And yes, I will still feel awful for having to ask.

 

If you hate seeing me ask once every couple of weeks, then hide my feed. I get it. Just don’t forget me.

 

Otherwise, wear my pin. Donate if you can. Send hugs always.

Chemo Girl Goes on Vacation

 

After 4 months of hell,Radlad and Chemo Girl headed out for a mini adventure.

 

We had a few options to choose from.

 

1)      Colorado – Seemed ok. Except the 12 hour car ride there and back. And finding someone to stay with seemed to be harder than we thought. By the time we got a response, it was too late. We had chosen elsewhere

2)      New Jersey – The only bad thing about this was the flight. Since my immune system is so low I would have had to wear a mask in the plane and around the airport. I did not want to risk the chance of infection with the end being so close.

3)      Austin – Was our destination of choice. It was close enough so if I got sick , we could come home. We knew plenty of people to hang out with. AND we had a plethora of stuff to do.

 

So with minimal effort,  I found a decently priced hotel room for the 4^th – 7^th.

 

We went to the Oasis on the 4^th. We sat and watched the sunset and had decent Mexican food. Watched fire works get set off all over Lake Travis. Then we went back to a friend’s house for beers. We decided to end the day around midnight. Headed back to our hotel and slept.

 

We went to the state capital on the 5^th. It’s a pretty building. We took a few pictures and lazed around downtown. Went back to rest for a bit, Then headed over to a another friends home for a cookout and chatting.

 

6^th we went wandering around downtown. Went shopping. Found some awesome things at a few vintage/thrift stores.  Rested. Went to the local gothy club for an industrial show. Went back to the hotel and slept.

 

7^th – woke up and came home. Went to the local diner aka my home

 

 

That’s that I did not like about the vacation:

How tired I was after doing anything

I didn’t get to do half of the things I wanted to do

My internal alarm clock woke me up at 9am – every day

 

 

Things that were good about the vacation:

It’s Austin, so no one looked over twice at the girl with the missing hair.

Resting

Free Breakfast at the hotel – OATMEAL

Discovering new places to eat

It’s only 4 hours away so I can go back.

Hanging out with friends.

Meeting new people.

Not being a cancer patient.  

Suicide is easy. Living is hard.

Suicide is really high amongst cancer patients. Although I do not condone it, I cartainly understand it.

Let me explain, from my point of view, why suicide even crosses my mind.

 

1)      I am at the mercy of the disease. Cancer dictates everything about my life. My energy level. How much, if anything, I am able to do.

2)      There are more bad days than good. Between feeling bad physically then feeling bad for feeling bad… each chemo treatment knocks 4-5 days out of me. Chemo on Friday, I don’t feel good until Wednesday of the next week. Then I spend the rest of the time chasing my tail trying to get caught up before the next round of chemo kicks my ass

3)      People feeling sorry for you. You gain a shit ton of friends but all for the wrong reason. You think I’m kidding? I hope, dear readers, you never have to experience what I have. I hope people are your friends for the right reasons.

4)      People already writing you off as dead. This one has been my favorite so far. I have stage four cancer so I’m already dead to some people. The flip side is people do not even want to get to know you because they think you are going to die anyway.. so what’s the point?

5)      Treatments get harder, not easier, as the time progresses. I wish my phase 4 treatment was as easy as my first phase was. I miss the good ole days of only 2 days sick. Or feeling great for 2 days then feeling bad on Sunday/Monday.

 

 

No worries, my beloved friends. I am not going to kill myself. I have too much to live for. I am just tired of people saying ‘I don’t understand why someone would do such a thing’. I cannot explain a thing for them but I can explain my headspace the last few days.  Now I don’t condone it. Suicide is the easy way out. Living is much harder. And afterall, I am a stubborn ass.