Sorry for my absence

I know my last post was three days ago, but I cannot begin to explain how these crazy pain killers are affecting me!

So, picking up where I left off. I was at Dr. Jordan's, and she was telling me the full details of the CAT scan I had done in the hospital. The scan revealed that I don't have pneumonia, but I have had an increase in tumors and tumor sizes in several places. The pain in my lower back can probably be tied to the fact that I now have spots showing up on my right ovary. I had the left ovary removed in January, and at the time, the surgeon said my right ovary was clear.

The spots that are in/around my lungs have also grown several mm's or in a few cases, cm's. And, I have noticed personally that the tumors in the right upper neck area that are currently being treated with radiation are continuing to move...a little bit.

There is some good news to take away from this. One, we actually found a pain killer that works on my body. I was given hydrocodone (sp?) last time, and it didn't work one bit. Dilaudid works like a charm. Two, I only have 2 more radiation treatments left, and they are working for the most part. Three, the MD Anderson appointment is less than a week away. And to answer the popular question, no, I cannot get in earlier to Anderson. The people I am going to see are going to a conference next week, and won't be available for appointments until Friday.

I apoligize for leaving you hanging with my medical updates, but you have to follow what your body tells you to do.

Some family members are coming in town today and tomorrow, so I am looking forward to spending time with them.
*Kelly*

Out of the hospital

I was able to leave the hospital on Monday around noon. I was going stir crazy in there! Note-I am on a new pain killer so please excuse any mistakes with grammar, spelling, etc.

I found out while in the hospital that I don't have pneumonia after all! That that was good news. But, they still couldn't figure out why magnesium, calcium, and potassium are below the required range. One theory was that my Nexium from my chemo induced acid reflux was causing the diarrhea. So, they stopped any kind of drug in the Nexium family. Not good, my coughing was worse.

Starting on Monday, I developed a pain in my lower back that I thought was coming from too much laying around. But, this was the same pain I developed right before I was told that the cancer had moved to the left ovary, so I wasn't 100% Woke up on Tuesday, at home, and the pain was worse. On Tuesday, I went to Dr. Jordans for my usual electrolytes infusions and some pain killers.

-I will finish the story tomorrow, my pain killer is making it impossible to focus on the computer screen-

Part Two

Yes, I am still in the hospital, and will probably be here till at least Sunday. Oh well.

Last night, a lung and kidney doctor stopped by to see me. They are both running tests. I have no idea what kind of test exactly, and haven't seen them since.

I got infusions of magnesium, calcium, potassium, and a few antibiotics last night for about 8 hours straight.

Dr. Jordan and her staff really spoil me. I always appreciate all of their hard work and responsiveness, but see it even more now that I am dealing with hospital people. When at Dr. Jordan's, they listen and do whatever they can to fix me and make me happy. When you are in the hospital, they just look at you and tell you whatever they can so they can get out the door.

I am pretty sure my colon doesn't like one of the antibiotics. My stomach got upset about 5 minutes after is started running. I told the nurse this, and she proceeded to tell me 3 times that it was the calcium, not the antibiotics. I have been receiving calcium weekly for 5 or 6 weeks...I know how my body responds to it. If the antibiotic is going to go straight through me, it is going to take the potassium, calcium, and mag right down with it. Where does that leave me? Exactly in the same place. Can you tell I'm having a blast in the hospital?

This morning, because of hospital rules, an ambulance drove me to radiation (which is about 10 minutes away). The entire time, I felt guilty for wasting a resource that could be used for a real emergency. The EMT assured me that this was part of their job.

So, as of 4:00 on Friday, I have nothing to report..just things to complain about. I am turning into an old crotchety person way early!!!

Admitted to Baylor Gpvine Part 1

I wanted to write a quick update for you teachers who will read this when you get to school tomorrow. Yes, I did get admitted to Baylor Grapevine Thursday night. I was just given two Ambian, and I feel I should turn off the computer before I stop making since :)

I will post more tomorrow once the Ambian side effects are gone.

I am ok, we are just trying to finally figure out why my Magnesium, Potassium, and Calcium levels are WAY too low. Also learn a little more about this pneumonia diagnosis I was given earlier this week.

Unhappy Lungs

For the past 5 or 6 weeks, I have been going to Dr. Jordan's office almost every day for an infusion of either Magnesium, Potassium, or Calcium. My electrolytes are out of whack, because everything I eat goes straight through me. This issue should start clearing up any day, because the drug that causes this issue has been out of my system for almost 4 wks.

Anyway, I went in for my normal visit, and didn't feel well. I had ralphed (my Dad's favorite word) that morning...which is very unusual for me. I never get sick. While I was at the office, my temperature clocked at 100.3, also unusual for me. So, they ran a bunch of tests and x-rayed my lungs. I was praying it wasn't pig flu (I refuse to call it swine flu..I think pig flu is funnier). Instead, I find out today that I have pneumonia. Geez, what 29 yr old get pneumonia!! They don't know if it is bacterial or viral, but I started a Z pac this evening.

The good thing is, my magnesium is getting closer to acceptable range. Mine was 1.1 today, and it needs to be 1.6. It has been hanging out at .8 for weeks.

I have also been working on a place for Jason, Lola, and I to stay in Houston. Jason has always talked about living in a high rise, so we might stay at a corporate/apartment suite type of high rise. Thats it for now..like that isn't enough!!!!

Why MD Anderson

I friend who I haven't seen in a couple weeks asked why I'm going to MD Anderson, so here it is.

The drugs I have been on since about July (cpt-11, 5-FU, and Vectibix) are officially not working 100% anymore. The tumors in my neck that are currently being radiated have been very aggressive, and other very small spots have shown up in other locations. Besides the neck tumors, nothing is out of control, but one oncologist told me that it is time to beat the cancer back down. Vectibix is the drug that causes that fun skin rash. Unfortunately, I have ran through all the FDA approved drugs available for my kind of cancer. I have two choices: 1. recycle drugs I have already been on 2. find a clinical trial.

So, while I finish radiation and wait for my MD Anderson appt, I am back on Oxaliplatin (the drug that causes the hand and feet numbness). This was the first major chemo drug I was on when I first started chemo.

As far as MD Anderson goes, I was told to stay in town for 2 wks. Sounds a bit extreme to me. They want me there, available, to have tests and scans done, and also be available for numerious dr. appts when they can fit me in. The only thing I know today is that I meet with Dr. David Hong on the 5th at 11:00. He is the head of Anderson's clinical trial department, more specifically, phase I trials.

Cancer trials have four stages. They all start as phase I, and move up the scale based on the results they receive. I had a doctor tell me once that the majoity of drugs tested never move to stage IV status and on to FDA approval. I think something like 10-15% of all drugs tested become FDA approved..eventually.

So, I am going to MD Anderson to see what clinical trials I can enter. Stage I or II more specifically. I was talking to the research nurse at Dr. Jordan's yesterday, and she has been in communication with Anderson about my case. Someone there told her they have a trial that I should fit into..so I was happy to hear that. The only scary thing is that I will offically become a guinea pig. These are drugs that are just being tested on humans, so anything can happen. Well, this guinea pig is sitting at Petsmart, ready for whatever her new owner has in store for her!!

History

I know I started this blog about 2.5 yrs late, but better late than never. I'm gonna go get checked out at MD Anderson in about three weeks, and I thought my family and friends would appreciate an easy way to hear about my progress.

I thought I would start with a quick history of my cancer journey...but then I realized that quick is not possible :)

August 2006-noticed a knot above my right collar bone. Was just about to start my first teaching job, so decided to wait a few weeks to get life settled. Saw a PCP a few weeks later, and she sent me for an ultrasound of the neck.

The very next day, she showed up at school to tell me that something major was found. Fast forward to about 1.5 months later. A biopsy and colonoscopy showed that I had stage IV rectal cancer that had made its way into my lymph nodes and lungs.

Decided to put my care in Eric Nadler at big Baylor downtown, and started my first round of chemo four days before Thanksgiving 2006.

After a year of driving an hour every other week, Jason and I decided to move my care closer to home with Heidi Jordan at Southlake Oncology.

For those who know the lingo, my chemo history is as follows:
11/06-5/07: Folfox plus Avastin
5/07-10/07: Folfox minus Oxaliplatin
10/07-6/08: Fulfiri
6/08-4/09: Fulfiri plus Vectibix
4/09-present: Oxaliplatin

A few pesky tumors in my neck decided to start acting up, so I started 5 wks of radiation to the right side of my neck 4/09.

My surgery history is as follows:
09/06: lymph node biopsy, above right collar bone
10/06: port installed
8/08: fat injection to the left vocal cord
1/09: right ovary removed
4/09: biopsey of another lymph node in right neck

I'm leaving out all the drama involving coughing, paralyzed vocal cord, among other issues...but most of you probably heard all about it.

So, as of today...I am half way through radiation, counting down the days until school is over, and preping for the big MD Anderson appt on June 5th.

Thanks for joining me on my new blog!
*Kelly*

My First Blog

Hello-

Saturday, May 9, 2009 is the first posting to my new blog. Stay tuned for more info.