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.