Bedside Doctor

My oldest son comes in frequently to say hello to me and asks "Are you feeling better?" He also love to come and pretend he's my doctor. Love it! You can see his tools and supplies on my night stand.

Last Chemo!!

LAST DAY OF CHEMO! HOORAY!


And here's a little behind the scene shoot at what the Infusion room looks like. This is the middle section of the room (there are about three and half sections.) Lots of big reclining chairs and tons of IV bag stands. Im the second to the end on the left.

Reading Selection

This always cracks me up. This is the waiting room at the Chemo facility. Notice anything funny about the magazine selection?
About half of the magazines are Fit Pregnancy. Obviously there are no patients coming here that are pregnant. And after coming here at least once a week for the last seven weeks, I can tell you that I am one of about 5 women of "child bearing" age, patient or not. They are really catering their reading selection to a very very small audience (if any.)

And most of the other magazines are Parenting magazines, which doesnt make a lot of sense either because about 90% of patients here are at least 50+ years old, in more the grand-parenting stage.

Good news

I had another check up with the Speech Pathologist today. She was completely amazed at how well I'm doing at this point. Still talking. Still have taste buds. Still eating and drinking. And my skin barely looks red.

She said that my symptoms really won't get any worse at this point, just the pain. Which is great because still being able to do all these things makes getting through the treatments and the pain so much more bearable.

They told me of a man who came in just a few days ago, and after just 4 radiation treatments, his mouth was all cracked and bleeding. I'm on treatment #26 today.

It really is amazing that I am feeling so well this far into treatments. I do have a lot of fatigue, but not near as much as I expected. My pain is very manageable with medications. Previously, I had imagined months of laying in bed, withering in pain, missing my kids and family, while the world went on around me. We have also been so incredibly blessed with amazing friends and family members so willing to help watch the kids, bring us dinners, and support us through this trial.

It is an undeniable testament that the Lord is blessing and watching over my family and I. To have so many loving people placed in our lives. To be guided to the absolute BEST doctors. And to have been blessed with endurance and had my symptoms and pain relieved. I can not imagine going through this without Him.

To learn more about my beliefs, click here.

In the Clear

Well, no fever or other reaction to the chemo treatment from Friday. Looks like im in the clear and will be able to stick with Erbitux and not have to switch to the traditional chemo drug. Yah!

Something good

Yes, there is actually something good that comes from being on chemo. (Erbitux specifically)



Super long eyelashes, every girl's dream

Short Stay at the Hospital

Wow, what a horrible week! Tuesday, after my radiation therapy, I went for a quick check in with my Chemo doc, who wanted to check out the redness around my port. It was almost a comical experience.

When getting checked in by the nurse, she took my temperature and asked how I was feeling. I felt totally fine. She then told me I had a fever of almost 104. So when the doc walked in, the first thing he said was "Well it looks like you're going to the hospital." We were shocked! Yes I had a fever but I felt totally fine. So we waited around at the doctor's office while they got me a bed a the hospital, then sent us over. It was really strange to walk into the hospital, feeling completely fine, and get checked in.

I was on the oncology floor, which lucky for us, had recently been remodeled, so the rooms were really large and super nice. At first it almost felt like a vacation. I just had to sit around all day. I could read books, do my stitching, watch TV, nap. But by the end of the first day it quickly turned into a torturous experience. The nurses were just ok. They would come in at least every 2 hours to check my vitals. Then my IV pump was constantly beeping, which drove me absolutely crazy! Then I'd also get visits from the Infectious Disease doctors, my Chemo doc, the phlebotomist, house keeping, some lady checking for bed sores, another asking about home health care, transport people to take me to radiation treatments, and the list could go on and on. Oh, and I could also hear the alarms and beeps from the other patients' rooms nearby. I could not get any sleep! I was literally on the edge of loosing my sanity. Just being there for 48 hours, made me feel more and more sick until I felt completely awful by the time my doc said I could go. He said that was a sign of being in the hospital for too long. I could have told him that!

Luckily all my blood test came back negative for a Pseudomonas infection. I guess the infection stayed in forearm incision and didnt get into my blood and the high fever was attributed to chemo treatments. It is really rare that chemo causes a fever, so we will try chemo again next Friday and see if this happens all over again. If so, I'll have to switch to traditional chemo, which will cause hair loss, and nausea. Something I really really dont want to have to do.

It's hard enough dealing with having cancer, but then to have to loose all your hair...well, it is a lot harder of an experience than most people can imagine. And the nausea. My throat is getting more and more sore by the day, and to add stomach acid burning my throat, well that is just something I really dont want to have to add to the mix. Pray that this was a fluke and I wont have a reaction with my next round of chemo and I wont have to switch.

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.

1st Chemo = 1st Side Effects

Everyone said the first chemo would be no big deal with no side effects. After going through the last three days since my first infuse, that was not totally correct. Ive had a major nauseating headache for THREE days. With a couple of times a minute, a pounding from my neck to the top of my head, feeling like my head might actually explode. Its gradually lightened up and is pretty much gone today. Turns out I might have been slightly dehydrated, or really just not hydrated enough with all the poison being pumped into my body. So Ive tried to drink as much water as possible and that has seemed to help. I do not look forward to having a major headache after every chemo. Let's hope next week goes better.

Thank You

Today, hundreds of people fasted and prayed for me. For me. It means so much to me that so many people are focusing their thoughts and efforts in my behalf. Im not the type of person that likes to be the center of attention, so it almost kind of strange to me. But I am so so grateful!

We can truly feel the blessings of the Lord in our lives as we go through this trial. We are so thankful that he has placed so many wonderful people around us to support and comfort us.

I wish I could give a proper THANK YOU to everyone who fasted and prayed for me today, and every other day! And to everyone who has left me a sweet voice mail, text message, cards, flowers, or meals. I wish I had more time and energy to respond to everyone, but just know that I am so grateful and it means the world to me to have so much support from loving friends and family.

Thank you

Thank you

Thank you

1st Chemo

I had my first Chemo Infuse. It was a loading (aka double) dose, so my official "1st" dose will be next week.

My appointment was at 9am and we were previously told it would take an hour or two. Boy was that estimate a little off. I think that time estimate was just for the chemo itself. When we got there, first I had labs drawn, then we visited with the chemo doc, which was nice but unexpected. Then we went over to the infuse area - a room filled with reclining chairs and IV bag stands.

When you first go in, they "access" your port. It's like getting an IV, but with a little button looking thing where the needle goes into the port (which is under the skin.) It's a little painful, but not bad. I had a little laugh today while watching the man sitting across the row from me getting accessed. He made this horrible grimace and the nurse asked him if it was really as bad as he made it look. It's really not that bad.

So after getting accessed, they push a little bit of saline to flush the line. A lot of people get a horrible taste in their mouth from this, but luckily I dont. Then you get a small bag of saline fluid to help with hydration. After that comes the Benadryl, which is the worst part. It's a big dose and it totally knocks you out cold, with the room spinning until you just cant stay awake any longer. It's pretty common to have an allergic reaction to chemo, so you get Benadryl every time. Once the benadryl is all in they give it a few minutes, then start the chemo. Then after the chemo, you have to wait another hour to check for allergic reactions and they run any remaining fluid left from the beginning.

We didnt end up leaving until 3pm. So ya, it took a little longer that an hour and a half.



After I woke up from my Benadryl induced coma/nap, I looked over to find that Robby was able to get a little shut-eye too. Which was great because this whole process has been exhausting for him also. He did mention though that his chair was pretty uncomfortable compared to my nice recliner and pillow. And that he was freezing. I didn't notice, being that I was under a heated blanket...

Surprise Surgery Day

Wednesday was a bit of a crazy day. Originally, the plan was to have a consult at 9am with a General Surgeon about removing the lump in my forearm (that all the docs have said is unrelated to my throat cancer.) I assumed it'd be a quick appointment since it was just a consult. Then, later we had another appointment scheduled at 3pm with the Gyno for an ultrasound to investigate an ovarian cyst that showed up on my CT scan.

The appointment with the General Surgeon went well. He was concerned with removing the lump in regards to the healing process while being on chemo. But he completely surprised us by saying he could do it later that afternoon and that he could also put in my port, all in the office! Crazy. We just need to get the a-ok from the Chemo doc. So we left, called and got the go ahead from the chemo, called the surgeon's office back. And they said "Come in now."

So we rushed to get the kids dropped off with someone and headed back downtown. They got me all set up, cut up, and out the door, with perfect timing to make it to my afternoon gyno appointment. Another long day under my belt and over with.

The Battle Wounds:



The port-

First appointment with the Surgeon

I stressed myself out so much the morning that we went to meet with my new ENT Surgeon for the first time. I was worked up about having to talk about all the surgery options. I knew what the options were, and none of them were good. Horribly life-changing type of stuff. By talking to this doctor, I was being forced to face the reality of life-changing decisions that needed to made, and fast.

We were so blessed to have been able to find this doctor (through family and friends in the medical field.) He does 95% of the Head and Neck cancer surgeries in our area. He is the one that all of my other doctors ask about what his opinion is on other things. He is definitely the most knowledgeable and most experienced doctor. When we first called to get an appointment with him (before we even had the biopsy results,) he was on vacation in Hawaii with his family. But his staff contacted him and reviewed my case while still on vacation and got me in the day he returned to the office.

During our visit with the Surgeon, he was very optimistic, reassuring, and comforting. The problem with my tumor is that it not just on my vocal cords, but also has a subglottic extension (basically it extends down below the cords too.) These tumors have been seen to more aggressive and more resistant to treatment than tumors that are only on the vocal cords. These tumors have two surgery options, partial laryngectomy (where they remove half of your larynx vertically) and full laryngectomy (where they remove your entire larynx, including your voice box, and give you a tract to breathe through the front of your neck.) Because of the location of my tumor, a partial laryngectomy is not an option. So if surgery is required, the only option is full laryngectomy.

But I was able to leave the office with a huge weight lifted off my shoulders. The doctor feels very confident that the tumor will respond well to radiation and chemo treatments alone. But we will still have surgery as a back up option if need be.

This was such a great thing to hear, because getting a laryngectomy is a huge deal. I would have no voice. I would be BREATHING THROUGH MY NECK! Since there's a hole leading straight into my lungs, you're more prone to sickness, you cant swim, you have to be careful bathing, and the list could go on and on.

So Im excited to get started on radiation and chemo treatments to get this over with! After speaking to the Radiation doc and the Chemo doc, it looks like all three doctors agree to my treatment plan: 7 weeks of 35 treatments of radiation and 7 weekly chemos. They said by about the third week, Id be feeling pretty bad. Most of the side effects will have set in by then. The pain medications will cause fatigue, and the more and more that meds that I need, the more tired I'll be. Eventually, I'll be in so much pain and have so much fatigue that I will be in a cycle of waking up, brushing flossing and mouth-washing (crazy strict oral routine!), force feeding my self, and then back to bed, because everything will be so exhausting (especially the force feeding part, since it will be like eating sand and will be excruciatingly painful to swallow.) And this will be repeated about four times a day.

The Story

I have been hoarse since at least November 2011. At the time, I figured it was cold season and I had a little bug. But then spring came early and so did the warmer weather, and I thought "well, cold season is over. Why am I still hoarse?" So I went to see my Primary Care Physician the first week of February. He said it was allergies and to start taking allergy meds daily and gave me a nasal steroid spray.

So I tried all three of the different allergy medication brands available and diligently took them for months. Never felt any different with any of the medications. Every month, Id go back to the doc to tell him my voice was not getting any better. He said my throat was irritated and was having a hard time recovering because of the irritation. Every visit he would give me some new kind of steroid (different nasal spray, oral, injections, etc) to help me get over this. Nothing helped. In fact, my hoarseness was getting worse. All along, my doc kept telling me that if this didnt work, I might need to see an allergist.

Ive also been dealing with fatigue for the last couple of years and wondered if I had a thyroid issue (which runs in my family.) And once I saw that hoarseness was a symptom of hypothyroidism, I immediately had a bunch of blood tests done. That came back negative of course (but I did find out I had crazy low B12.) At this point my doctor is telling me that I should see an ENT.

The next week we had an appointment with the kids' ENT and I asked him for a referral (I hate finding new doctors.) Finally, my appointment with the ENT came and within 1 sentence of hearing me speak, he said it was obviously not allergies. He used a rigid laryngoscope to look at my vocal cords and then all of a sudden jumped back and said that he could see what the problem was. I had a large, irregular tumor on my right vocal cord. Large and irregular. Those words have haunted me for weeks now.

The ENT said it was most likely benign since I dont have any of the risk factors: smoking, drinking alcohol, or reflux. But that it was something that they needed to investigate quickly. They got me into surgery the next week for a Laryngoscopy with a biopsy of the tumor. By this time my hoarseness had gotten so bad that I was barely able to speak.

They were actually able to test the biopsies during my surgery to make sure that they got a viable sample. But with the tumor being so large, they ended up having to take more and more samples. I was also told beforehand, that many times the doctor is able to have a better idea of what the tumor is after seeing it during surgery and that he would speak to me in the recovery room afterwards. Well, he never came to speak with me and went right into another surgery. They also refused to give us a copy of the pictures of the tumor taken during surgery. At this point, I knew something was up. I hoped it was benign, but with the words "large and irregular" haunting me, my doctor avoiding talking to me, and with it being such a rare occurrence in someone my age, I just knew it had to be cancer. But I didn't actually say it out loud to anyone. I was hoping for the best, but preparing for the worst.

My surgery was on a Thursday, so we had to wait over the weekend to finally get the results on Monday. Over those five days, I kept thinking about the strangeness of this and all of the inconsistencies, and became more and more emotionally content with the idea that this was cancer. It just had to be. So when we went into the ENT's office late Monday and received the bad news, it wasn't a surprise to me. I did not shed a single tear. It's not the way I would have ever thought I would have felt in that situation. But I was content with the idea that it was cancer. I had already processed it and come to terms with it.

It has been like running a marathon ever since. One to two doctors appointments almost every day. Researching. Deciding. Planning.