1 Week to the Day...

I'm taking a chemo drug called Erbitux. It is different than traditional chemo. It does not cause nausea or hair loss. But it's main side effect is no walk in the park either: a major rash (which looks very similar to having really bad acne.) It can be very painful and scaring. I guess I didn't pay my time with teenage acne issues...

It's amazing that they can put your symptom occurrence on a timeline and tell you exactly what will occur when. I was told the rash would occur about one week after the first treatment. And sure enough, to the day, I had a breakout.

The timeline for the rash is:
weeks 1-3: acne rash, getting worse week by week (even hour by hour sometimes)
week 4: scabbing
weeks 5+: rash starts to general subside, getting better over time, could take weeks or months

And in keeping with full disclosure, Im showing pictures of my horrible gross rash. This is so embarrassing. These pictures were taken at about 10 days out.

Luckily, I dont have a ton on my face, yet...
its mostly all between my eyebrows and hairline, with a little around my nose.

The majority of it is one my neck and chest, because that is where it is reacting with the radiation treatments.

In this last picture you can also see where my port was put in. The two incisions are much more red than they should be, and they itch terribly. The doctors are concerned that it might be infected, especially after finding out about my arm infection-more details below.) Which is really really bad. They would have to take out the port and put a new one in. Not fun. We will find out over the next couple of days what happens.

We received the culture results back from Urgent Care from the infection in my forearm incision. It's not staph, but much worse, Pseudomonas. A very aggressive bacteria that spreads through your blood system and is very resistant and hard to fight. So instead of my first round of antibiotics of 5 days, with the possibility of 10 days for staph, I'm now looking at 15 days of strong antibiotics (cipro.) Let's just hope my port is not infected also.

Mask Face

This is what I call mask face. When I have radiation treatments, I wear a mask that keeps my head, neck, and shoulders in the exact same position every time. It covers from above my head down to about mid-chest, going across my shoulders. It is made of semi-soft meshy plastic that was molded to me. The only opening is a tiny little nose hole to breathe through. But let's be honest here, it is really HARD to breathe through that TINY hole! It is kind of like breathing through a snorkel for the first time; at first you are taking breaths but feeling like you aren't getting any air and you're suffocating, then all of a sudden you realize you are getting a tiny bit of air, but just enough to get by.

If you look closely, you can see the impressions from the meshy plastic. And a beautiful zit on my forehead-a precursor to the Erbitux rash.


Here is a picture of a mask that is just like the one I wear. This one is on display in the lobby, so they have the clips wrapped around the back of the head. Normally, you would be laying on your back, and the mask would cover your face and the clips would reach down to the table and connect to the edge. There is a clip at the top of your head, one each side of your head, and two at the shoulders

Daily Goal

Everyday, my goal is to drink at least a full gallon of water. It sounds like a lot, and really it is, but it hasn't been difficult for me in the slightest. I've always been a water drinker, and with the onset of dry mouth, Im always needing a sip anyways.

A "Real" Day

Today was a big day. First day of a combination of Chemo and Radiation treatments. These are long days. The chemo is in the morning, once a week, and takes about 3-4 hours total. Longer every other week with a visit with the chemo doc.

Radiation is 5 days a week, in the afternoon at the same time everyday. With seeing the Radiation doc once a week. Luckily, this treatment only takes about 10 minutes in and out the door.

So on Fridays, when the treatments coincide, it makes for a very long tiring day. And from what I hear, the day of chemo isnt so bad, its over the next few days that you really feel like crap. Last week was a testament to that, but we shall see this week. Here's to hoping drinking over a gallon of water today does the trick! (It sounds like a lot, but really, my mouth is little dry already and Im still thirsty.) Im feeling pretty well tonight so it's looking good so far...

Visit to Urgent Care

Today, I was having a little heaviness in my chest and it became worse and worse over the day, to the point that it was so painful that I could barely move or breathe. I called up my Chemo Nurse/new best friend and she told me to go in to urgent care (since it was late in the day) to get a chest x-ray to check for lung problems.

We went in, and they didn't find anything wrong with my lungs/chest and gave me a diagnosis in fancy medical terms that meant "lung pain." Thanks, already knew that. But it was good to know I didn't have a collapsed lung, pneumonia, blood clot, port displacement, etc.

But the doc took one look at my forearm incision (where my lump was removed) and said it was infected. It is possibly a staph infection (which is really difficult to fight, especially while having cancer treatments) so he took a swab to send in. He fixed my arm all up and told us he'd call on Monday with the culture results. I also went home with the beginning of the antibiotic for a staph infection, which would be extended if it actually turned out to be staph.

He also checked my port incision and that looked great. I was surprised at how much better it looked than my arm.

All in all, turned out to be a good visit. Glad to get two problems solved with one visit. It's always something though...

Let the Countdown Begin

Today was my first day of Radiation Therapy. The beginning to the end. The countdown to the onset of side effects. And the countdown to healing. To overcoming.

They say the first week has very minimal, if any side effects.
The second week you start getting some side effects, but nothing to bad.
But the beginning of the third week is when everything really starts getting tough, and only gets worse and worse until the very last treatment of week 7.

While I dont look forward to the beginning of side effects (in fact it's the thing that scares me the most), I am anxious to this all over and done with.

What to expect

Ive meet with so many doctors. And they all end the appointment with a review of what symptoms to expect. There's a lot of pretty serious ones, so they all want to make sure we are aware and able to prepare for them.

-Erbitux (chemo) rash, aka bad acne that can be very painful and leave scares.
-Erbitux also causes very dry skin allover your body. It can cause deep cracks on your fingers and feet. Some people even lose toe nails.
-Radiation causes your skin to basically get a really bad "sun burn." It can blister, crack, and bleed.
-My radiation treatment is a wide field that covers from my jaw bone down to mid-chest. Because the field covers my jaw bone, there are a lot of symptoms that will affect my mouth. My jaw bone will be compromised from the treatments, so later in life I can never ever have a tooth extraction because my jaw bone will not be able heal right.
-Dry mouth (since the radiation will kill my salivary glands), which causes mouth sores and ulcers, and cavities, and makes it difficult to eat.
-Loss of all taste buds (which in combination with dry mouth, makes eating anything seem like eating sand. Tasty.)
-Sore throat (understatement of the century) described as feeling like raw meat, like a blister that has opened up and oozes (which is called Mucositis- your throat is oozes a great amount of mucous). Some people end up needing feeding tubes because it is either too painful to swallow or they just completely lose the ability to swallow.
-Loss of my voice - due to all the trauma in my throat, my cords will not be able to function properly, but hopefully this will be temporary. I never regain my "normal" voice and will always sound hoarse. They also told me to never expect to sing again.

They said that it is a big misnomer that chemo is more difficult then radiation. It is actually the opposite. Chemo is used to make the radiation treatments more effective. The vast majority of my side effects will be from radiation.

Also, many times radiation and chemo are done separately, but my treatments are being done concurrently, making the side effects of both a lot more extreme.