Bring on the radiation

Greetings all -

This is Hal -- I'm filling in for Ann today on the blog...

Just the facts:
Ann received her first round of radiation today and the "zapping" takes about 10-15 minutes. A simple in and out. She is doing well after the treatment but does best when she lies flat in bed -- hence my duty on the blog.

The hope and plan is to have a few rounds of the radiation and see the symptoms abate -- a decision regarding discharge from the hospital will depend on progress on the symptoms (lots of pain and pressure in the neck/head/shoulder).

Ann and I continue to be blessed by so many wonderful people that take their time this holiday season to go out of their way to pray for Ann and contribute so many other acts of charity towards our family. Thank you so much from both of us.

A wonderful Advent:
We reflect what a great Advent Season that we are having -- we are able to enjoy this time where things have slowed down for us to reflect on preparing the way for Christmas. Isn't it amazing the way that God can get our attention? We hope that you too are able to simplify and spend time and create wonderful memories for you and yours this season as well.

So, take care and Prepare the Way...

Can You Say Whirl Wind?

This week did not start out nor is ending the way I had ever planned but then again when do they ever? As I blog, I am sitting in a very comfy bed at the KU Med Center Hospital where I have been since Monday morning. It all started with some scary dizziness and severe pain from the top of my head down to my shoulder all on the left side. For those of you at church last Sunday you may have noticed my personal escort service helping me out to the hall. I became really lightheaded and a little out of it. Thanks to the Bechles and Petersons for acting so quickly and taking such great care of me. Again the entire Sacred Heart community astounds me with their love and devotion to me and my family. I could not have been in a better place to pass out.
Anyhow Hal took me to the ER where they ran some tests, scratched their heads and sent me home. Another episode happened when I was dropping the girls off at school the next morning. Thankfully it occurred after I left. It came on pretty quickly while driving and I pulled over to the nearest street where I quickly called Hal. This time it was really scary and much much worst. Hal was there within 5 minutes and brought along a blood pressure cuff. The docs in the ER told us if it happened again to get my pulse and BP. He couldn't get a reading the first two times but then came up with 80/60 and I was sweating profusely with no relief. We decided the best thing to do was to call the ambulance where they escorted me back to KU ER. This time we got the oncologists called in and started to get the answers we needed. Apparently I have a few tiny tiny lymph nodes hinging on a pretty important nerve that controls the left side of my face neck and shoulder. When the nodes are just in the right position they can cause my bp to decrease and all kinds of other not so fun stuff. I have been in lots of pain, mostly severe headaches and shoulder pain but no more episodes since being admitted. So the plan is to radiate the nodes that are involved to shrink them and release the pressure off that nerve. I start therapy tomorrow and will have fifteen treatments once a day. I should be done by Jan 5th and they believe that by the second or third treatment I should definitely be feeling tons of relief. I will be staying here until at least Friday where they can monitor my symptoms and make sure I am responding.
Now, for those of you who are worried or upset or frustrated. Please don't be. This is not a big deal. As a matter of fact, the doctors say that this is a rare case and quite interesting to them. If it wasn't for the tiny nodes being right on top of that nerve they wouldn't have even taken any action against them. This is just another bump in the road and is not a turn for the worst..
For those of you at school with the girls please give them an extra hug a wink a laugh just to let them know that things are fine. They have been hearing things through classmates and their concerns are up a bit. Hal brought them by last night which gave them relief to see just how mom is doing and what a hospital even looks like. They especially though it was cool to go to the cafeteria and pick out anything they wanted and then eat in bed with me.
Thanks to all of you who call and offer your time to me and the family. I usually say it amazes me at how everyone is so giving but it is just how you are and how you have given your life to Christ and in return live your life as He did.
Thanks to ALL! Love, Ann

Ann Experiments With Drugs

Tuesday was filled with one scan after another. They looked at everything from the top of my head to the tips of my toes and thankfully found nothing of concern. Another appointment with the doc Wednesday and then up to the treatment room for my very first dose of an experimental drug they have no idea what will do to me (sounds like I am back in college again). I asked if they gave out special t-shirts to the very few of us who have been "chosen" for the clinical trial but no such luck. The med was uneventful and I was home by 7:30. My love and thanks go out to my wife Sarah for dropping what she had planned on her day off and coming with me. You can always ease my mind and make me laugh even when I am sitting naked in a room with you awaiting the results of some pretty scary tests. Thanks friend!!!
I feel good today and did my usual things. I will be back at the cancer center every two weeks for the treatment until they tell me to stop coming.
To those of you who are concerned. We are doing well. The girls have been informed that a wee little bit of mom's cancer either stuck around after chemo or missed me so much they have come back. They give me extra loving which I will take any day and they remind me of pure acceptance and love no matter if mom's hair looks like a boys'.
Happy Advent to all!
Ann

WOW She's Good!

Well, perhaps my doctor is not so over the top and yes, she does deserve every bit of salary that she receives. And unfortunately that means that the biopsy did come back as positive for malignant cells. It's unbelievable and a little scary that nothing showed up on any of the scans yet there was in fact something there. So now we regroup and begin a new plan. I have been enrolled in a clinical study of a brand new drug called IMCA12 manufactured by the company Imclone Systems (this is the company that got Martha Stewart in trouble for insider trading). The drug is a monoclonal antibody which targets and blocks a specific type of growth factor receptor on cancer cells which can help cancer cells grow and survive anti hormonal therapies which is what I have been on since my first diagnosis six years ago. Evidently my body has grown resistant to the anti hormonal drugs and we are now going this route. The IMC-A12 can block receptors on tumour cells that may cause tumors to grow. Like I said before this is a brand new drug and has only been available since July and is not approved by the FDA. I have always said that I wanted to help other women who suffer from this dreaded disease and now I can. If this drug proves to be a breakthrough in the advancement of breast cancer then I will be forever grateful for being in the study.
So next week I have to be at the hospital all day doing screening tests which include an MRI of the brain, CT of the abdomen,bone scan, and blood work. I will then begin my treatment on Wednesday. The drug is an IV every two weeks at the cancer center and then I follow up with Dr. Fabian every four weeks. She measured the lymph node in my neck and will continue to measure it throughout treatment. If the node stays the same or shrinks then I will remain on the study. If it begins to grow I am kicked out of the club.
Hal and I pretty shocked to say the least that this node actually came back positive but with everything else, we just kinda go along and take it day by day. The good news is that we are on top of it and it is slow growing. The bad news is that we just can't get rid of it once and for all.
We had a low key Thanksgiving with our friends The Coffmans' and are now decorating the house for Christmas. I am really looking forward to enjoying this Advent season and reflecting on the important things....each other.

Vacation Over

Well it was back to the dreaded cancer center last Wednesday to find out the results of my CAT scan. There is nothing worst than sitting in a waiting room with no clothes on for an hour. Not to mention on an uncomfortable table with paper sticking to your butt.
Anyhow, the scan came back okay. I say okay because I don't think that my doctor would ever say "everything is perfect, no worries"! There was a tiny tiny node that showed up and I was all but on my way until I mentioned that I was having pain in that some area. Then I was whisked off to get an MRI of my chest and neck and then the next day back in for another CT of my neck. The story is that I am still suffering from pain in my shoulder and it has now turned into nerve pain in my neck. When I wake up in the morning I have to pop a few Advil and workout (move around a bit) before the pain subsides. My doctor feels my left lymph node to be hard (which is where my nerve is). And even though the scans are clear, she still wants me to go in for a biopsy of that node this Thursday. I appreciate her thoroughness and trust her exclusivly but I feel the biopsy is a bit much. She deserves every bit of her paycheck if indeed there is something in that node! We will meet up again the day before Thanksgiving to find out what the next plan of action will be.Please continue to pray for me and my family.

Ohh The Waiting

Today was my return visit to the doctor. We started at 9:00 and got home at 1:30. I started with lab draws, a visit with my oncologist and then off to the treatment room to get my bone hardening iv. The results of my CAT scan were clear and my PET scan showed a bit of activity. A little lesson on what these tests are...... the CT scan is a very detailed invasive look at my body where a PET scan looks at metabolic activity. They inject a glucose material in my IV.Cancer cells are very active and "light up"when they are happy on the PET scan. Activity is assigned an SUV number.The higher the SUV number, the more likely there is cancer present. A high SUV number is in the 20-30 range. Mine was 3. My doctor seems to think that this number could be caused by the drugs that I am taking. Just to be sure we will repeat the scans in six weeks.
While this is not super great news, it is good news and I feel so blessed to be watched so closely by such a great team of doctors. I have to tell you that I was so saddened and helpless seeing so many people walk in and out of that office today. I did a lot of praying that's for sure! It was such a relief to get out of there and breathe in the beautiful weather we have been having.
The girls are getting accustomed to school. They are still so tired and at each other come dinner time. I am enjoying my free time by getting my jewelry business back up and going and by cleaning out all the closets and drawers that I have been shoving crap into for the past eight years. My friend Tawnya from Florida will be here and I will spend the whole weekend with her. I am so looking forward to enjoying our time together and not having a care in the world like the good ol' days.
Our love to all. Please continue to keep us in your prayers.

People have been asking me what has been going on with me lately, that I haven't blogged in a while. Well the truth is I have been enjoying what is left of the summer. Since I started feeling better it has been just time spent with the girls and Hal. We did end up going to Colorado to see my family. It was a great trip and good to see everyone. Our next trip was to Lake of the Ozarks along with some other families. The girls loved the lake and the condo we stayed in. Thanks Gwen and Ryan for your generosity. Even with me being so sick most of the summer, I honestly have to say that this was the best summer ever. We just had so much fun hanging out and not having to be anywhere. School started back this week and Grace started kindergarten. She absolutely loves it and was so ready. After I dropped them off I came home and just sat in the silence. I have been feeling good. My joint pain still bothers me but not to the degree that it limits me. I have started working out again and have put some weight on. Hal says I no longer look so frail. I go in for another PET scan on sept 10th with a follow up with the doctor on the 17th. I hate the fact that as the date approaches I start to think that the cancer could be back. If it does we'll beat it up again that's all. Can't think like that anyhow, too much of life to live and enjoy. Please continue to pray for us and for all those who suffer each day.
As Hannah Montana would say..... "Life's what you make it so let's make it rock". Love to all!