The fucks.. Where did they go??

SO I seriously considered driving off a bridge last night, with my dog, and just ending it all. But I realized that watching Squish drown would not be ok. Not that it would matter because I would be dead anyway, so who fucking cares?

 

But he does not deserve it. He just wants to give me love.

 

And I do not want it right now.

 

I am a big raging ball of hate. I am Kari’s temper. I am Kari’s well of anger.

 

I am taking it out on everyone around me. And I have some seriously fucked up thoughts going through my head.

 

I realize they are fucked up but that does not stop them from happening. And no amount of Xanax or Cytylopram or Hydrocodone can medicate me past this. It’s too late.

 

I don’t want to quilt because I am afraid I’m going to stab myself mercilessly. But I get upset because then Shay couldn’t use the materials. And I really have some pretty awesome materials.

 

Taking an online class might not have been the best idea right now. I have never taken an online class. I studied my ass off yesterday and I got a 40. Oh it gets worse (on an open note quiz). I REALLY  thought I had comprehended the material. I was so ready for it… and I failed it. a lot.

 

I am waiting for the results from my biopsy. And I still haven’t had time to process the fact that I have already had cancer once. I feel like a huge burden on everyone. I want to be like an animal and go out to the woods to die alone.

 

And don’t give me this, ‘you’re so strong’ bull shit. I’m fucking done with it.

 

And If that biopsy comes back as clear, I think I might lose my shit worse than I am right now. The ;last three weeks have been HELL. Doctors told me it was back. They were doing a biopsy to confirm then they were going to start chemo. I was going to be out for a MINIMUM of six months. So I start preparing everyone; my work, my family and my friends.  I call and get information on disability so I know what I am ready for. I start calling people I owe money to so that they have a head’s up… Everyone is ready to go. Because the Cancer is back…

 

We go for the biopsy and the one on my side is gone. Possible pneumonia was there. Not to worry. But they biopsy the one on my sternum.

 

Two days later and it’s still bruised.

I’m tired.

I am so mentally drained I cannot even to begin to explain.

 

I broke down at the office today: full on uncontrollable sobbing. They don’t get it. I missed only 5 days of work with the stage 4 bull shit I went through. I should have just taken disability the first time. I’m a fucking wreck.

 

I need a mental break. I don’t know where to begin. I don’t know what the fuck I am doing anymore. And honestly, all the fucks I have given are all gone..

 

People who love me are getting pushed away. With a giant bulldozer. And the great wall of china is being built there. I don’t want to talk about it because it doesn’t help. And NO ONE seems to fucking GET IT.

 

I could scream my feelings but you don’t fucking get it.

 

I’m out here rowing my oar in a giant circle. I do not get a break at home. I do not get a break at work. Shit, even in the car I don’t get a fucking break.

 

It’s hard to go through this when you don’t feel like people understand you. Or GET you. Even worse, when you don’t feel like you should complain because you’re “so lucky to have so many people” going through this with you.

 

And the one person who gets it… I don’t want to pour on her.

 

I’m just done

 

I need a fucking break

 

Not a cry for help. I’m not stupid.

 

I don’t need a pity party

 

I just needed to vomit…

 

 

 

 

The biopsy - The Second Time

So here is where I explain to you what it is like to have a biopsy done

(While I recall today, please remember that this was my fourth one this year. This story has remained pretty much the same each time.)

The cancer biopsy is a day surgery. You get to the hospital 1.5-2 hours ahead of time. You get registered. Today, the lovely lady at the front desk said I had not met my deductible and I almost peed myself laughing... Told her to just send that right in to insurance.

ANYWAY, then the lovely nurses take you back to a room. Sometimes you get your own room but in larger hospitals, like today, you get in a mass room with other people who are having biopsies done. Then you fill out paperwork and explain what procedure you are going to have done...Or in my smart ass case, I explain it to them while they chuckle. I was even explaining to everyone else what the boxes meant. This one is if something happens, do you want blood transfusions. This one allows them to tape your procedure for future reference.. Seriously, I had the nurses laughing..

So normally the doc comes in and tells you what's going on but this time, the doc comes in and sits down. Now he's been in the room two other times to talk to the other patients getting biopsied but I got the sit down. Apparently he's read my extensive file. He's concerned about the mass in my lungs and wants to do a biopsy on the top mass near my sternum. I explained to him that this was already done last week and was inconclusive, that's why I was sent to this hospital... He gives me confused face. He has no idea I already had this type of biopsy before. Somehow he's missed this in my file. So I'm concerned that I almost just paid for something I already had done.. and the fact he's not as clued in as I thought he was. Which is sort of a relief to us both, because now he's going to do some more research before he pulls me back. So an hour or so passes and he comes back in. Turns out he's run into my marrow doctor and they've agreed it's time to go ahead and go in to the bottom part of my lung and biopsy those two tumors. SWEET! Its about time. I give him a high five and the nurse as well. We head down the hall to the room.

So this is where things go back to being similar. They wheel you in a room with an open MRI.. or CT scan. Put you on the machine and start the machine going. Well, the put me on my side and get the CT scan going. After a few minutes, doc comes out and says, looks like whatever antibiotics they had you on cleared up the lung infection. You probably had pnemonia but those masses are gone. Little happy dance commences. So we're going after that mass in your chest.

So they do the iodine test to make sure it's all still there. WORST TASTE AND FEELING EVER. I vomited in my mouth. And the warm all over feeling.. not so welcome with a mouth full of vomit. Back and forth on the machine and wait? what's that you say? My blood pressure is 70/55? SHIT.

So they cannot give me sedatives until my blood pressure gets back up.. So we sit up and start tellig stories until my blood pressure reaches an acceptable stage. That's when the drugs start. And they're supposed to make me sleepy. Doc starts inserting this needle.. into my chest.... right in front of my eyes. and I flip out a bit.... So they give me more drugs and try it again... Needless to say I'm a chatty mo fo. But now I start moving my arms about. Because I love to tell stories with my hands.

This is not exactly helpful to a doctor with a big fucking needle he's trying to stick into your chest... right near a major artery.

They have to explain this to me at least three more times before they finally give up and knock me the fuck out. well sort of, because apparently I really wanted to be awake. I asked if I could take a picture of him stabbing me in the chest for my blog. AND my blood pressure is dropping.. SOOOO doc gets me all loopy and finally still.

And STABBY STABBY STABBY happens. About 30 minutes of digging later and he's 'all done'. But I go to sit up and... I have a feeling in my chest that I haven't had before. And my blood pressure drops.. And he says possible knicked artery.

Not to worry but I'll be there for a minimum of 4 more hours on bed rest.

Oh yeah, also,, I haven't eaten since 8pm the night before. I also haven't had anything to drink since midnight.

Bitch seriously needs a cracker.and I'm in some serious fucking pain. I can hardly breathe.... I'm bleeding like a stuck pig... So I cave and ask for hydrocodone and proceed to sleep for a few hours.

Doc comes back and does chest xrays says they looks exactly like they did coming out of the procedure.. So I'm still bleeding heavily but it doesn't look like it's leaking from my artery.So go home.

But instead ..I go to Sprinkles. I'm bleeding out of my chest, I haven't eaten all day.. surely, a cupcake is the best choice I could possibly make, right?

No

But I'm a grown up and a four hour procedure took me 9.

And, of course, was complicated.

I should know something by Friday. I am in a lot of pain tonight. And it hurts to breathe. So he said he went deeper than the other biopsy people have done. He hopes he got it. If not, I'll have to do another biopsy.

It's oh so quiet... It's oh sooo still

I have left a nugget of information about my diagnosis and have backed away.

Truth is I am terrified that this is my reality again for the next few months.

And yes, I know I will get through it. And yes, I know that in the end I will be fine.

Since the first biopsy came up inconclusive and they cannot biopsy the mass in my lower left quadrant of my left lung, they are going to try to do another biopsy tomorrow.

Once I know what this all means I will let you all know.

Truth is, no one really has an idea until after tomorrow.

Results will be before Friday; part of me hopes for tomorrow since I am going in so early.

Guys: What is terrifying about all of this is that I had 5 weeks between my last chemo and my positive pet scan. With the chemo still in my system, the cancer was all, "wassup?!?!". What's worse is how rare it is for Hodgkin's Lymphoma to START in the lung.

Why do I gotta be all overachieving and shit?

I think it's time for a LUSH bath and to find my phhhmmmm 6am is early.

Waiting.. Still the hardest part

Good news. My MRI came back and there was nothing there. I have a brain (still to be diagnosed) but there was signs of a brain in there just maybe not functioning at te right levels.. hahah

 

Bad news. My biopsy came back as inflamed. Which wouldn’t be much to be upset about except they were only able to biopsy the top one  because the bottom one is too close to major organs and arteries… and other shit. (soo gangsta)

 

So tomorrow is specialist day..

 

Where we get to see if he’s going to send me to one of his guys for a different biopsy OR open my lung up and go in to biopsy the other one.

 

Why this is important.

 

If my oncologist thought it was just inflammation, we wouldn’t be worried. Give it a couple months.. blah blah blah. But I have symptoms… night sweats, coughing, etc.

 

 

 

I’m angry.

 

I’m passed angry.

 

I want tomorrow done.

 

I want a game plan.

 

Now everyone huddle up.

 

*GO TEAM*

 

 

 

 

The road ahead

It’s been a long road so far and the road ahead is looking bumpy, scary and full of things ready to jump out at me unexpectedly.

 

I am scared to death. I won’t lie. Maybe I shouldn’t say death. I should just say I’m TERRIFIED.

 

I had my biopsy on Monday to just verify that it was the same cancer and I had not upgraded to something more (like lung cancer). Tuesday I had an MRI to verify that it had not spread to my head. I have been having some headaches that have been leading to vision loss in my left eye. So we are just making sure I haven’t fully over achieved to a brain tumor on top of everything else.

 

This is what I know so far.

 

1)      I have to have chemo. It will be worse. It will be harder. I will be sick as hell.

2)      I will have to have bone marrow transplants.

3)      I will be in the hospital at some point

4)      I WILL Be out of work

5)      I WILL Be taking some classes to keep my brain occupied

6)      I WILL Be on disability

7)      Chris has been nice enough to allow me to stay on his insurance, for now.

 

This is what I don’t know.

 

I don’t know HOW MUCH chemo or HOW MANY chemo appointments there will be.

I don’t know how much bone marrow

I don’t know what type of transplants for sure

I don’t know how long I will be in the hospital

I have LTD & STD but they pay SHIT. It won’t even cover my bills but it is SOMETHING.

I don’t know how long Chris will let me stay.

I don’t know how I am going to make ends meet.

 

I know everything will work out. It always does. It will just be rough.

 

I have three people going with me on Friday for the appointment so I should have plenty of company.

 

Things I am looking forward to:

Halloween parties coming up this weekend

Seeing Rocky

Pearl Jam concert in November

 

Just when the air smooth’s  out, there is turbulence. I need a break. I good one.

 

I will enjoy the small things while they are still here

How did we get here?

On Septmeber 6, 2013 I had my last chemo treatment.

I had been declared ‘cancer free’. We had the BEST party ever. The house was filled wall to wall with friends, family, food and booze. I got drunk and sober all in the same night. It was amazing.

We framed the before and after PET scans and hung them in the living room. Shit. I took them to work and was walking around with them like I had just won the championship belt. We made announcements. I started to plan my life after cancer.

I started looking into college; planning my future. The realization that I was going to have a normal life again. People stopped calling all the time. Every post I made on Facebook did not get 50+ likes. Most importantly, I was coming to terms with everything I had just been through.

But as it got closer to the PET scan, I started to develop a cough and the night sweats. I am NEVER hot. Rad Lad started to hear a wheezing. Still, we were both optimistic. There’s no way cancer can come back that quickly. The chemo was still in my system.

Saturday prior to the scan, I developed a sore throat. Sunday, I was full on coughing/losing my voice sick. Sunday evening I felt awful. Monday I called into work. I called my family doctor who saw me right away. She thought I had the flu. Gave me a Zpack and poked me out the door. By 7pm that night, I had a fever of 102 (My normal body temperature is 97.2). So we went to the ER but the wait was 2 hours. Instead I called my oncologist who told me that my immune system was back to normal levels. Take the day off tomorrow and continue with the PET scan in the morning. Take it easy…

So I get to my PET scan, do the scan.. but at the end the person runs the scan says something he has never said the last four times…”You see your doc this week right? He might call you before then to get you in but you see him this week, right?”. My mind is spinning but certainly, there’s no way it could have possibly come back this early. It’s been a week and a month.. I mean, really? The chemo is still in my system, right??

Friday comes, Radlad and I go to the doc. He comes in and sits down in front of me. (This is NEVER good news). He tells me the PET scan results came back and there are two masses.

I ask him to repeat. You’re shitting me right?

Two new masses in the bottom part of my lung. One of them is 1.5cm and the other is 3cm.

Repeat? Please?

And I cry. And I shake.

It’s been less than a month??? What. The. FUCK.

Two masses. The chemo left my body and cancer decided to give it a whirl again. WTF. WHAT THE FUCK?!?!!?!?

So he starts talking treatment options. I ask for a break. I need a moment to process what he’s just told me, And I’m sobbing, not because I am sad.. Instead I am ANGRY.

More chemo… and then bone marrow transplants.. something about Medical City Dallas..

I make him stop. I lost him somewhere around chemo. I’m not processing. I you could have felt my heart break somewhere around two more masses.

So I have a five minute meltdown. In the middle I ask about sushi. (Radlad and I had been planning a celebratory sushi night for that evening which I was scared was now off). Sushi is fine and he recommended a glass of wine or two. And then I begin to process again.

He’s already called ahead. I have an appointment on Monday for biopsy. It turns out the symptoms I was having were super important. He wants to make sure I have the same cancer… that I haven’t over achieved/leveled up to a new cancer. Then I mention the headaches I have been having with the loss of peripheral vision…. And now were are scheduling a MRI; just to make sure I haven’t REALLY leveled up. That’s scheduled for Tuesday.

And then I have an appointment with the bone marrow transplant person as well. They’ve taken the liberty to go ahead and schedule these appointments.

Not scary at all. Fucking terrifying, actually.

So more chemo. Check.

Bone Marrow transplants. Check.

WHAT CAN YOU DO TO HELP??

Right now I do not need donors. They will be using my own since it will have less chance of rejection. I will be in the hospital. I will need visitors.

Radlad will need someone to talk/vent to.

And yes, I am going to start up the donation site again. I don’t want to, I really don’t. But I will need the help.

And when it gets time, I will ask for physical help: going to the doctor with me, taking me here or there, hanging out with me.

 I’m scared.

I’m angry.

I’m terrified.

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.