Sunday, November 29, 2009

Feeling Better/Still Waiting for Test Results

Hi, everyone! It has just been a week since I last wrote and I am feeling much better. I went on Tuesday and had a thoracentesis done. Basically, they stuck a needle into the space where the fluid had accumulated around my right lung and drained it out. They removed a half liter of fluid and within a few hours I was able to breath much better. They tell me that a half liter of fluid is a relatively small amount compared to what they sometimes remove from patients, but it has made a huge difference in how I feel. They sent the fluid off for testing and I should know the results of that tomorrow.

I went for my second dose of Navelbine on Wednesday and Dr. Wendt drew more labs. My alkaline phosphatase went down a little bit, from 283 to 255 and my tumor markers went from 32.5 to 33.4, up a tiny bit, but still in the normal range. They did a test on the alkaline phosphatase they drew last week to tell if the elevation was coming from the liver or the bone and it turned out that it is the bone causing the elevation. All of my doctors tell me they don't think the cancer has spread to my bones. They don't have any real reason to think this, but say it just doesn't "feel" like bone metastasis to them. They qualify this by saying that this doesn't mean it's not bone metastasis, they just don't think so right now. I am scheduled for a PET/CT scan tomorrow and hopefully this will give us more information. We are all hoping that all of the things going on symptom-wise and lab work-wise are side effects of all the treatment I've already had. Fingers and toes all crossed!

We had a wonderful Thanksgiving! Joey was able to come down from Flagstaff for a couple of days. It is always great to see him; I miss him terribly. We had a quiet day at home, watching football and playing games and cooking. No funny turkey story this year because we skipped the turkey altogether! The boys don't like turkey and Joe has just gotten a new grill, so we did steaks! I did make stuffing and apple pie, so we weren't completely nontraditional. Janaya and Andrew did lunch with his family and then were here in time to do dinner with us. Then, we played a domino game called Mexican Train. It was a great day.

Yesterday, I took Janaya and Michael to the ASU/U of A game. We had a great time! Last weekend, I couldn't come up the stairs from the basement in our house without almost passing out and having to lie on the couch for twenty minutes to catch my breath. Yesterday, I climbed up to row 23, twice, and was just a little bit short of breath! It is amazing the difference a week can make. ASU lost, but it was a great game and we all came home a little bit hoarse from all the yelling and cheering we did.

This is a picture taken in our driveway before we left for the game. We dropped Joey off in Scottsdale because he was getting a ride back up to Flagstaff from a friend. Joe stayed home and worked on his car.

This is Janaya, Michael, and me at the game. We were in the nosebleeds!

I can't help but think about where we were at this time last year. I had just been diagnosed less than two weeks before Thanksgiving and had been given a pretty poor prognosis. It was a very scary and overwhelming time for us. I am very thankful for every day I've been given this past year. I'm thankful for all of my doctors. Joe, Pam, and I are constantly amazed and in awe of how knowledgeable and caring each of them are. I'm thankful for the experiences over the last year that have opened my eyes and heart in new ways to the beauty of the world, my friends, and my family.

I hope each of you had a wonderful Thanksgiving. You were all in my heart and thoughts.

Lots of love!

Sunday, November 22, 2009

A Scary Turn of Events

Hi, everyone. This past week or so has been a pretty scary one for me and my family. I have hesitated to write about it. First, I didn't want to in any way overshadow the amazing accomplishment of Pam, Joe, and Janaya. I posted the slide show of the pictures of their walk without any comment because I just couldn't come up with words that were capable of expressing my love and admiration for them. Second, I think in some subconscious way, I felt that if I didn't type the words maybe they wouldn't be true.

I have been having some difficulty with my breathing ever since the surgery to repair the damage from the radiation. It started out pretty mild and at first I thought it was just a side effect of having received general anesthesia. But, it has gradually gotten worse over the following weeks. I had a chest x-ray done about two weeks ago which was negative. Then, last weekend, the shortness of breath seemed to get worse and I developed pain in my back. We went to see my radiation oncologist and he sent me the next morning for a chest CAT scan which shows I've got fluid around my lungs. He is not sure what is causing it. It could be an infection, some kind of virus or fungus, or it could be cancer. He said looking at the films that it doesn't present like cancer usually would, but to someone whose cancer didn't show up on any of her mammograms, ultrasounds, or MRI's this is little solace. I go Tuesday morning for a needle aspiration of the fluid and we will know more when we get the results of that.

In the meantime, I started my new chemo, Navelbine and Xeloda. Dr. Wendt ordered routine bloodwork to be done before giving me the chemo. My tumor markers were 30 which is in the normal range, but up from the last ones which were 26. Everything else was normal except for my alkaline phosphatase. The normal range for this test is 39-145 and mine was 265. I didn't think much of it at first. The nurse who gave me my results didn't even mention it. Then, when we got home and looked it up on the Internet, we found out that an elevated level is an indication of problems with the liver or bone, two of the places breast cancer likes the most. Dr. Tannehill, my radiation oncologist, ordered a bunch of lab work when I saw him last week and the alkaline phosphatase level had gone up to 283. He ordered additional lab work that will tell us if it is coming from the liver or the bone.

So, it is a pretty nerve-wracking time around here right now. I'm tired from being sore and short of breath all the time. I am trying very hard to not let my mind jump ahead to conclusions until we have all the test results in, but it is hard not to do. I'm really, really scared.

One of the highlights of my week was going out to happy hour with my friends, Carol, Norma, Ruthie, and Janaya. Carol said something to me about my being brave in sharing my journey with all of you. I told her it is not a matter of being brave at all. It is a matter of survival. The love and support I receive from each of you, the words of encouragement, the hugs, the prayers and good thoughts, are what enable me to face each day and not let the fear overwhelm me. Unfortunately, I am not the first person to have to make this journey and I know I won't be the last. It doesn't do any good to ask, "Why me?" It is what it is. But, the one thing I can count on, the bright spot in all of this, is knowing how many people are here for me, walking beside me each step of the way, giving me the courage, hope, and strength to face whatever lies ahead.

Thank you.

Monday, November 16, 2009

Friday, November 6, 2009

Drains Out!

Well, this Tuesday was three weeks from my surgery and I've healed up great. I had an appointment Wednesday to follow up with the plastic surgeon and have my drains removed. They were absolutely the most uncomfortable part of the whole thing. Every time I moved, I could feel them pulling at the stitches in my side or causing irritation under the skin. It is amazing how something like those drains can wear on your energy and emotions. I had thought several times of snipping the stitches myself and pulling them out, but was afraid I'd chicken out.

My appointment was for 3:45. Joe and I walked into the surgery clinic at 3:35 and within just a couple of minutes were taken to an examining room. Dr. Hurst came in withing a couple of minutes, looked at my incisions, asked how I was doing, and said everything looked great. We'd get the drains out and I'd be on my way. I undressed and sat waiting, ready, on the examing table. Dr. Hurst told me to take a deep breath and hold it. I did, squeezed my eyes shut and whammo, he yanked the first drain out. Oh my gosh, oh my gosh! That really hurt! It felt like someone stabbed me with a knife. Egads! Two more to go. Ok. Deep breath and hold. OH MY GOSH! OH MY GOSH! THAT HURT! THAT REALLY HURT! I started to panic. How in the world was I going to get through a third drain being yanked? It was excruciating. I squeezed my eyes tighter, and gripped the table harder and waited for his instructions to take a breath and . . . nothing. I slowly peeked out and looked down. He had pulled the last two together! Oh, thank goodness!!!! This experience truly gave meaning to the saying that ignorance is bliss. If I had had any idea of how badly pulling those drains out was going to hurt, I know they'd have had to sedate me! Luckily, the relief from the discomfort the drains were causing was almost immediate. It felt so good to be able to move about and turn over in bed that night and each day since has been better. We were out of the clinic and back in our car by 3:45!

Everything else continues to go well. I'm scheduled to start my new chemo regimen this coming Wednesday and it should last twelve weeks. I'm starting to feel more energetic and am finally staying up past 7:oo in the evening. I have developed a bit of a cough and I have a lymph node in my left groin that is swollen right now, but it seems the consensus is to just watch for right now. I've learned that living with worry and fear are part of this disease. I'm working very hard at not letting them overwhelm me and detract from the joy of living each day.

School and life have been very busy and I haven't gotten together with my friends in a while. I miss you guys!

The three day walk is next weekend and Pam, Janaya, and Joe are getting geared up to participate. As a team, they raised over $10,000! I'm so proud of them and wish I could participate with them. Thank you very much to all of you who donated. You are all my everyday superheroes!

The walk starts at the park right here in Gilbert and the walkers will go right past my elementary school. I will be out there with my students cheering them all on. The kids in my class wrote letters that will be given out to the walkers next weekend and reading some of their sentiments brought me to tears. It is sad to know how many families have been effected by this disease.

Well, that is all.
Lots of love and hugs to each of you!