Not feeling so great. Nausea and fatigue.

Retail Therapy

Since I'm living the single life for a few days due to Sofia's sickness, I figured I would take advantage and go to the mall. Sofia scored a pair of Hello Kitty jeans and 7 summer dresses for next year. I also purchased a Coach scarf for my head, had a pretzle and sugar free Rita's Water Ice as a snack, and spent an hour looking at shoes.

General Whine

I have a tendency to only blog when I am feeling well. I am really tired now, tired to the bone.

I have had 2 treatments, and my blood counts were expected to go down by the end of this week. My right eye is blurry. I hope it's just from my comtact lenses.

I am quarantined from my house, until probably Saturday. Sofia has coxsackie virus. It's highly contagious and with my compromised immune system, I cannot be there. The oncologist's office said that the virus can even survive on surfaces, so the whole house is being disinfected with a bleach solution.

This whole experience brings out the best and worst in people. Special thanks to my family for being so supportive and understanding and helpful. My mom took off from work to watch Sofia for the remainder of the week, because Sofia is banned from daycare. My secretary's daughter is at my house now to relieve my mom. They called to tell me that Sofia just took 7 steps! I am so happy they were there to witness this, rather than daycare. It also tells me that Sofia is feeling a little better to be so adventurous.

Dear Sofia, I miss you with all my heart. It breaks without you...

Cancer is curable, stupid is not

I struggle sometimes with the stupid things people say to me. On the lymphoma forums someone started a post of the stupid things people say. Here are a few gems that I have experienced myself:

Can't they just cut it out?
You have the good cancer!
Can you smoke marajuana for the pain?
I am so sick over you being sick!
I thinking about making you some soup, but didn't get around to it.
You need blueberries, they have a lot of antioxidants.
Everything happens for a reason.
You're so strong. If anyone can beat it, you can.
You need to do yoga.
I know how you feel. I had a mole removed from my leg. It was benign.

Making Memories

I just observed a hospital worker eating a bagel with cream cheese and bacon. Frankly, I think its brilliant and I am so going to buy some vegetarian bacon to try it on my low carb bagels! Actually, I think I could go for some nice salty lox, and I think its time for a Trader Joe's run.

Sofia was up all night. Lack of communication caused Chris and I to both give her benadryl for her cold, thus resulting in a canceling out of the sleepiness side effect and we had a supercharged hallucinating baby. At one point around midnight she was laughing manically and bouncing up and down.

Her newest trick, a variation of the "Sofia Flop" (where she intentionally falls down on her ass) is to throw a pillow off the couch and dive bomb onto the floor face first. Yes, we have a gymnast. All these antics and she still refuses to walk.

We have regular conversations about religion and politics. She babbles and speaks with excellent comedic timing. Her current platform for Ocean County Clerk is la la la, pftttttttt, tick tock.

Sofia is a beacon of light in all this mess. She keeps me in check. Children are impressionable and do pick up on emotion. I am genuinely calm and serene and happy when I am with her. On our way to NYC today I was thinking while riding through the tunnel how in a few years, we won't remember all the details about our treks to NYC for cancer treatment. I won't remember the pictures hung in the cafeteria or the signs hawking silly bandz. We'll tell Sofia stories about how we dropped her off at 5 am in the dark at Uncle Skip and Aunt Jean's house, clutching her ladybug pillow pet, How she would sit on the bed with them and watch the news and play with their cats. How she got thrush from her pacifiers and we had to paint her lips with violet dye.

The long rides with Chris, fighting over each other's driving, listening to his Cliff Claven commentary about EVERYTHING.

It doesn't take long for people to forget.

I frequent a couple of forums. I am addicted to The Bump, but as the categories change, there are less posts. Right now I post on Toddler 12-24. It's easy for me to log on once a day and catch up on everything.

I started to go on a Hodgkins Lymphoma forum, and I found myself frustrated because there is no action on the board. Then i realized, hello? only 8K people are diagnosed a year, and how many would be on the forum?

I need a new forum that is active and interesting. Even Facebook, with my steroid induced insomnia does not meet my entertainment needs.

I probably should be doing something productive during this time...like billing.

Good News

I don't have any news, but I heard some good news today. A friend got a permanent job. It lit up my night.

It made me start thinking about how we act around people going through tough times. Last year a friend's husband passed, and afterwards, I was afraid to talk about good things in my life. I felt guilty.

I wonder if people also do that to cancer patients. Afraid to share their joy, because of our perceived misery. I can only speak for myself. I like to hear the good. Bring on the good people!

FML

I really hate the term FML. It was apparently started because of this scene in Superbad. I watched this movie with my Fall 2008 English 151 class to kill time while holding writing conferences. Yes, this is why I get fabulous reviews each term.

When I was waiting for a diagnosis I thought when it came back as Hodgkin's I would post on Facebook "Fuck Hodgkin's!"

Then when it happened, it didn't seem appropriate. It wasn't how I felt. I felt positive. I had a plan. The plan, of course, has had some hiccups. But, it's moving forward.

My Sofia is a shinging light of pooping giggling happiness throughout this time.

Lucky Friday the 13th!

New York is THE place to get chemo...where else can you buy Dunkin' and wine at a gas station?

I had scheduled a flow study and possibly revision of my port for Monday at Hudson Valley. However, MSK called and said they could do it Friday, so Friday it was! When I was called back from the waiting room, the nurse asked the usual: name, birthday and what I was there for. Well, revision was not on the calendar and I was heart broken.

Turns out in the end I didn't need a revision...and I had my first chemo.

Now I am tired and feel like I have the flu...

I can now cross going commando in nyc off my bucket list!

Things change daily. I am not scheduled for surgery on Friday afternoon at MSK for a port revision.

Then Monday I have chemo rescheduled again.

I am tired and in pain today.

Fingers crossed...

Lemon Meringue Pie in the Face

People don't plan cancer, and I am learning very quickly that you cannot plan the treatment. I am so focused on the chemo countdown, and planning after chemo events. Now that the date of recovery is pushed back again I realize maybe I might not be cured for Christmas. Cancer-you're fucking up my 5 year plan.

So, I held my breath until I saw the doctor, and sighed that I would be getting chemo. However, the nurse could not get a blood pullback when she flushed the port. This went on for a while. Then several heparin flushes. Then another nurse to give it a shot.

Then a larger needle. More saline flushes. More heparin. More pushing. Tape, cotton and finally a call for a clotbuster, atalayse aka TPA.

That med sits in the line for an hour. No luck. Same routine of saline, heparin, and flushing. Fluid goes in-no blood out.

It was too late for a flow study, so I have to go back tomorrow. I got a script for the flow study.

The surgeon who put the port in is on vacation, so he is not available to "tickle" me. My aunt's contact at MSK called last night and said to have the doctor rewrite the order for study and possible revision.

Boo.

This may be done tomorrow. It is becoming harder for me to find the silver lining in these delays. I know someone else in a rush for a cure. Maybe we are supposed to slow down.

Hopefully this post will help me sleep.

Sebastian has failed me.

Rules for Chemo Day

1. I am always right, all day, no matter how nonsensical I may sound.

2. All other drivers on the road suck, even if the near miss is my fault.

3. Lady Gaga Bad Romance is my cancer theme song. It should play repeatedly on the iPod to calm me. The occasional Blacked Eye Peas I've Got a Feeling is allowed. When in doubt refer to Gaga. I have an OCD with music while driving and I can listen to the same song 15,000 times.

4. Even though I generally drink a large iced coffee with extra cream, sometimes I will, on rare occasions, change it up and order a hot coffee. No Dunkin Donuts man, an alien did not take over my body as a spawn pod. Sometimes I do change it up. See Rule 3 re: Black Eyed Peas.

5. I love my Toyota.

6. Number 5 is technically not a Rule; however, see Rule Number 1.

Life may not be puppies and rainbows, but right now a percocet and a sugar free krunch klondike bar are coming really close!

I can't sleep. I am convinced that I will not get chemo tomorrow. Each time it is delayed I feel like people must think I am a liar and I don't really have cancer.

Sofia is feeling better, and she is so freaking adorable! She actually has a sense of humor, which I find amusing and intriguing. She also started to read the words on the My Baby Can Read commercial, so now I believe she is a baby genius!

I hate when people say I am strong. I am not strong. Sometimes I am falling apart not strong. Sometimes I am super depressed not strong. Sometimes I am a hot mess not strong.

However, right now I am percocet and klondike strong!

Statistics

Since Hodgkin's Lymphoma accounts for less than 1% of all cancer cases per year and 1 in 38,375,818 Americans will have Hodgkin's lymphoma this year, I decided I won the cancer lottery.

The chance of me winning the Mega Millions Lottery is one in 175,711,536. However the chance of me getting 5 numbers and winning $250,000 is only 3,904,700. So, in the big scheme of things, I am so going to be able to pay off my student loans via the lottery!

If I win the big mega millions I have a mental list of people who I will help. First and foremost is this poor guy, Joe. Joe is a client of the firm who has lost everything, including his waterfront house. Joe, if I win the jackpot, I am buying you back your house.

I also have a mental list of who I won't help, including but not limited to certain annoying people and HOFSTRA LAW SCHOOL!

Why do I care so much about Joe? I don't know. He did show up at my wedding and cried, and that really touched me. I just adore him. I wish he was my Dad.

So I bought a ticket last night, with 4 quarters from the bottom of my bag. I got one number. Screw you NJ Lotto and screw you Yolanda Vega!

Flight rescheduled

Ok, again I am set to appear at the gate at 8:45 on Monday. Hopefully this is it!

My positive spin to this delay is I have one week left to diet BEFORE I end up on prednisone. I am hoping to lose 100 lbs this week? Think I can do it?

Sofia has reduced me to cat napping in the conference room while the big boss is having lunch in the kitchen. I listen for his footsteps as I snooze.

I had two awful thoughts about these purported additional abnormal cells:

a) I have a bizarre combination of Hodgkin's and Non-Hodgkin's lymphoma. I'm going to die. Fast. and Sofia will have no Mommy. Yes, I cried a lot.

and

b) I am actually ok and I lose my $300 wig deposit. Yes, I cried. A lot.

So in the end I'm back at status quo. Wig and chemo still on track. Sofia still has a mommy, and I'm on a diet. Anyone up for a cheeseburger and diet coke?

Actually I gave up meat. I did well until that Turkey club on Friday, forgetting that a club has not only turkey, which I didn't give up yet but bacon, which I did give up. I decided that the mayonnaise negated the bacon and I was in the clear.

For now hummus and veggies!

Flight rescheduled and no comps!

I am full of anxiety! Ring phone ring!

Flight CD30 has been delayed

Although the pathology report from Northwestern University tested positive for Hodgkin's Lymphoma, MSK has found some additional unidentified abnormal cells. These cells need to be identified before I start chemo...

I tried to be very positive after the initial delay. However, I confessed to the nurse that I am not feeling well and I lost my drive.

Simply stated, I am in pain. Nothing helps: ice, heat, tylenol, and now the newly prescribed percocet.

Last night I took some Aleve and I did get some relief! I am not supposed to take Aleve...but I went out and bought some. I think Ursula's expanding waistline is pushing on a nerve or something. Damn you Ursula.

I have been in a bad mood all day. I am angry I have no control over this, over my body. I am supposed to call MSK between 1 and 2 pm tomorrow to see if I can come up and get chemo. I was supposed to go at 8 am.

I am anticipating the worst. Now trying to hope for the best.

Sofia is also very sick, possibly with strep and that is not helping. Driving back from the doctor yesterday I just started to cry. No one will love Sofia like me. No one will take care of her like me.

I hope that the treatment plan gets back on track.