Today was THE day

We had Wil’s birthday party yesterday.  I was surprised that I was able to have the level of energy that I did.  Saturday was a dragging out kind of day. I could barely get myself out of bed.  Then on Sunday morning I woke up achy, tired and with a blasted sinus headache.  I wondered how I’d make it through the day.  The Neulasta shot that they give me the day after chemo to make me produce more white blood cells also causes me to be achy and fell like I have the flu.  The only thing that seems to help of all things is Claritin.  So Peter went out and got cupcakes for the party and Claritin for me.  After taking it and drinking some coffee I felt so much better.

Speaking of coffee, I’m at the point now where things are starting to taste different.  Coffee doesn’t taste the same as it used to. Boo!  :(

One thing that I’m glad about is that my hair made it through yesterday for the party.  They said anywhere from 14 – 17 days after the first infusion it would start to fall out, and like clockwork on day 16/17 — today — my hair started coming out in clumps.  I’d run my hand through it and had a fistful in my hand.  Oh well.  Time for the clippers.  I asked Peter when he came home to cut it off.  At first he was a little apprehensive.  “It can’t be falling off that bad!”  Then I ran a hand through my hair in front of him.  “Oh!”

We had some fun with it.  I kind of look like Beaker here:

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The final result:

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I never realized how cold a head can get without hair!  Wil’s still trying to get used to it.  I let him touch the fuzz before bedtime.  I have a wig and some hats so all is good.

Never thought I’d be joining “the club”.  Anyway, it’s done and over with.  Let’s see how long my eyebrows and lashes last.

Finally, I want to say how grateful we are for all the generosity of everyone around us.  We’ve had so much outpouring of support and kindness both open and anonymous.  I’m looking ahead to better days when we can pay this kindness forward.

Thanks everyone!

Second treatment and an attitude of gratitude

Today will be my second treatment.  I’m keeping this short since there’s really not much to update on.

I have been thinking about the huge outpouring of support from everyone,  neighbors, friends, even the parents and teachers from Wil’s class.  You hear about it but when it’s you on the receiving end it can be surprising and a little overwhelming!

I’ve mentioned before how hard it is for me to let go and accept help. It’s like it’s ingrained in my core fiber and DNA so it’s been hard to open up and let that go. I’ll leave you guys with a story of me 15 years ago…

I went to the store to buy a window air conditioning unit. I lived in The Bronx in an apartment on the 4th floor so I made sure I had my hand truck with me to get that bad boy home.

I drove over to PC Richard and picked out my unit. After I paid for it they brought it out and I put it on my hand truck. I head over to my car open the back door to put it in the back seat but there are two problems: the door doesn’t open wide enough to put the box in (this was in my pre-Jeep days) and I couldn’t grip the box and lift it since it was so heavy. Actually if I angled it righy, I could get it in the back seat but there was no way I could lift it.

I huffed, I puffed and was drenched in sweat. Remember,  there’s a reason I was buying the AC. It was summer in the Bronx and hot. I didn’t think to ask for help, and this is NYC, you just don’t do that. Finally, two guys came by and offered help. At first I said no, they kept insisting. I still said no. Then one of them said (I’m paraphrasing), “look lady, there’s no way in hell you’re doing this on your own, so why don’t you just take the help.”

That was the first time that it dawned on me that there are times that we can’t do things on our own and that we just need to shut up and take the help.

Thanks everyone for being so patient with this stubborn lady!

OK- so it wasn’t as short as I thought it would be!

 

The ups and downs of chemo

Those that know me know I’m a bit of a nerd. I’m all about science and stats and numbers. So, in my head I’ve been visualizing a line graph of my energy level from the first day of infusion until now. So this is pretty much what it looks like (please excuse the scrubby cell phone writing)Screenshot_2015-03-11-21-21-54-1 .  I got the infusion on Friday.  Saturday I was OK. Then Sunday was when I bottomed out.  As in, I don’t want to move unless it’s absolutely necessary to expend the little amount of energy that I have.

I imagine all the cells in my body wondering what they had been injected with and the fast growing ones  (cancer cells if any, and hair, nail and skin ones as collateral damage) aching and dying a slow death. Monday was butt dragging in the AM. I never realized that prepping a bowl of cereal and making a peanut butter and jelly sandwich could feel like I was being asked to run a 5k. Then as the day progressed I got more and more of my energy back. The chemicals in my body having run it’s course.

Tuesday I was back at work but felt like I was walking through marshmallows and thinking through cotton but something seemed to click around 3 pm and my head suddenly cleared. I could feel the haze lift. The last of the chemo left my brain.

Today I’m pretty much back to feeling like me, except for the crazy eye twitches and dry eyes which I found out are among the side effects.

Round one is done. Round two is next Thursday.  We’ll see how it goes. They say the effects are cumulative with each round being slightly worse than the previous.  I just hope to have enough energy for Wil’s birthday party. We’re keeping it low key, but I still want to be able to talk to people and take the time to enjoy the day!

 

 

Port Replacement and First Infusion

Breve Resumen en Español (abajo)

Yesterday was a long day. I had to have my port replaced and then try again for my first infusion.

Before I get into that, a little bit of background of the insurance debacle that happened the day before.  My insurance, UHC, and CMC, my hospital network, failed to come into an agreement for their new contract that expired on March 1st.  Up for renewal was UHC’s 10 year contract with CMC. Neither side is budging. CMC wants more money for certain procedures and UHC wants to lower what they pay when there are issues caused by the hospital which require additional patient procedures that could have been avoided (such as my port replacement).  UHC said following CMC’s request would create higher premiums for their insurance customers.

On Thursday the doctors realized I had a defective port. My Oncologist called my Surgeon to take a look and realized that it was leaking which can be dangerous when administrating chemo, more on that later. My surgeon explained that the port that he used was a new one that he had never used before because the hospital no longer carried the older ones (read: more expensive ones). He said that in all his years he never had this problem using a mini-port. I was scheduled to get the port replaced the next day (Friday) and right after get wheeled up to chemo.  Sounded like a plan.

I left the hospital and on my drive home I got a call from the CMC surgery center to go over the standard questions for surgery: allergic to anything? No. Reactions to anesthesia? No. Pregnant? No. Etc.  As soon as I hang up the surgeon’s scheduling admin calls and tells me she’s rescheduled my surgery to Novant Hospital in Matthews – 45 minute drive from our house- for an 11:30 surgery, which would have left no time for my scheduled infusion.

I was livid.  She canceled my original appointment without asking me. She thought she was doing me a favor since technically CMC no longer takes UHC, and she never bothered to ask me if I could check with them– UHC. I’ve already received a continuation of coverage waiver because of my diagnosis.  She insisted that the port reinsertion wasn’t considered continuation of care. So I had to frantically call UHC (while sitting in pouring rain in a dripping Jeep and stressed out to the nines) only to be told what I already knew, I was all set. Then I had told call the scheduling admin again to tell her and her response, “well let’s see if we can get you back into the schedule for tomorrow,  and they’re going to make you sign a paper saying you’re responsible if United Health Care doesn’t pay.” I was at the smoke coming out of my ears point. I asked her to get back to me ASAP since not getting the port in on Friday was going to delay my treatment for 2 weeks.

After 45 minutes of sitting in the Jeep on the phone between surgery departments, scheduling admins and health insurance company,  I head home. I kept waiting for the scheduling admin to call and when the clock hit close to the 4:30 PM (30 minutes before their office closed) I called the surgery department at the hospital myself and was given my new time. At least it wasn’t the original butt crack of dawn 5:45 am time, now it was 7 am. A few minutes later the doctor’s scheduling admin called me with the same info. Yeah, yeah, thanks.

Yesterday morning I went in for my port replacement.  You know that you’ve been at the hospital too many times when the nurses recognize you, “you’re the one with the cute little boy!” And you already know the routine: strip, put everything in black hospital tote bag and put on gown and non slipping socks and cover up with warm blankets.

The surgeon came in and was very apologetic about the whole insurance confusion.  I explained to him that I’ve been through it a few times and UHC has my continuation of care active so that any procedure coded under the same prognosis is covered — I even double checked with hospital billing. He’s an amazing surgeon,  you can tell that he genuinely cares. At the infusion center, one of the nurses said she’s never had a surgeon come up to check on a patient, makes me so grateful that he was the one recommended by my primary. I had a good feeling about him from the beginning.

After surgery they wheeled me up to the infusion center. Talk about grooooogy. It’s all a haze. I went through all the meds they gave prior to infusion and Peter stopped by right as the A part of the AC treatment started.

The A drug isn’t given via IV drip, it’s done through a large injection (she gave me 3 of them). It’s so toxic that they need to make sure that it doesn’t burst the vein and so every 20 ml she needs to draw out some blood to make sure it’s in the right place and then reinsert. This is why I needed the port. My veins are so bad that they could have burst with the toxicity of it.  It can cause second degree burns on skin — which is why my leaky port was a danger.

After that was the C drug, that’s given through IV drip for about 30 minutes.  All in all my infusion was about 90 minutes, since I had my blood test on Thursday. They did need to give me Phenergan before I left via the IV since I was so nauseous.  Having surgery the same day didn’t help.

The side effect of Phenergan is that it makes you super sleepy. So I was in a sleepy haze yesterday.  Don’t ask me much about yesterday after 3 because I really don’t remember! Peter is an amazing husband.  He’s been taking care of queasy, sleepy and I’ll admit it, bitchy, me the past few days.

I’ve been a little tired today but mostly dizzy when I get up and walk around. It’s a side effect of the anti nausea medicine. It’s gotten better as the day has progressed.  I’ve also had cravings for the worse food- two McD’s cheeseburgers and fries please! I was told just to eat anything I can stomach. Hopefully soon I can stomach some healthy food.

Finally, today I got my Nuelasta shot to boost up my white blood cells.  As much as I want to avoid sick people I can’t avoid the little germ bomb in our house that I love so much.

A huge thanks to our neighbor for having Wil over for yet another sleepover. I hope they go to bed earlier tonight. Just threaten him with no Angry Birds if he doesn’t get to bed. :) and thanks for the food! You’re amazing. Many, many thanks!

And as always, thanks everyone for all the well wishes!

Breve Resumen en Español

Para dar a todos un resumen rápido. Tuvieron que sustituir el IV porte ayer porque el original que habían puesto en la semana pasada fue defectuoso. Ayer fue un día largo, tuvimos mi cirugía en la mañana y mi quimio por la tarde. Todo ha ido bien. Era un tratamiento muy corto, y las que van hacia adelante serán cortas también. Van a ser unas 3 horas de principio a fin. Yo estaba muy cansada y mareada ayer, pero se siente mejor hoy. Tuve mi inyección Neulasta hoy para impulsar a mis células blancas.

Nuestro vecino tomó a William para una fiesta de pijamas. Ella también nos hizo algunas comidas congeladas, lo que estamos muy agradecidos.

Por ahora todo está claro con mis pruebas. Estoy un poco cansada y un poco abrumada por lo que no estoy llamando o respondiendo a las llamadas. He estado muy cansada y también en la brega con las cosas con la casa en PR que espero que podamos resolver pronto.

Gracias a todos por su amor y buenos deseos!

 

 

Essays and Short Stories