In Loving Memory

Our "Super" Golf Gal 

May 12, 1955 - September 9, 2013

It is with a heavy heart that we announce Sandy has lost her battle with Sarcoma. She passed away after a long seven year fight. She was surrounded by family and we are at peace knowing she is not hurting any more. We know this blog was a great outlet for her and introduced her to lots of internet friends. Thank you all for your years of reading and encouragement. We miss our Golf Gal terribly.

Radiation is done, on to chemo

So I met with the Sarcoma Surgeon last week. He said he could operate on the tumor in my abdomen but because it abuts my right kidney he'd have to take that out too. He recommended against the surgery since I would need my kidney to fight off the toxicity of chemo.
I met with my Oncologist the next day. I am approved to start the drug Afinitor (Everolimus). There is currently a clinical trial at Emory University using Afinitor plus a second new drug under research. I will find out on May 20 if I can start the trail. The thought being two drugs have a better chance than one. If I can't get into the trail  in a timely manner, I'll start the Afinitor on my own next week.
Thursday I go for my 3 month CT scan. Let's see what's going on in my abdomen and how much larger that tumor has grown off chemo.

Sarcoma treatment update

The month of April I've had radiation to the chest mass near my heart everyday for 20 days. The only side effect I've felt is some skin burning and peeling on my back like a bad sunburn. I go for 3 more stereotactic treatments to the other lung mass starting this week. After radiation, we'll concentrate on my abdominal masses. I have an appointment tomorrow to meet with a Sarcoma Surgeon to discuss my options for surgery. Wednesday I meet with my Oncologist to get her opinion and plan from here. I know she has a few different chemo's in mind to try. Since my cancer is systemic and not all of it operable, I know I will have to do chemo, but it's such a "crap shoot". No guarantee it will work but with side effects that wreak havoc on your body. I'm hoping surgery is an option for these new masses. We'll know after tomorrow. 

Health update: still growing

So health wise it's been a difficult 2 months. January and February the auto-immune disease was hitting me hard. I think I felt badly every single day with joint pain. I finally got a prescription for Prednisone to help until the Plaquenel kicks in. That has helped on a daily basis, but I still seem to get a flare up once a week. This past week on Sunday into Monday I was really suffering. By Monday I had dehydrated myself. I fainted on my way to the bathroom and ended up on the floor. After that scare I decided to go to the emergency room for some relief. They diagnosed me with severe dehydration, gave me 2 bags of fluids thru IV,  and ran some other tests. They did a chest ct to check for clots (none found) which showed my nodules have kept growing, even on 3 weeks of the new chemo drug Sutent. The large one near my heart is now over 7cm and getting too close for comfort. I need that one gone! My Onc is already investigating what new drug to try next. I go in on Wednesday for a biopsy of the abdominal and the lung tumors to see if the "biology" of my cancer has changed in some way. Hopefully we'll chemically determine what the best line of attack should be. I also am questioning Ablation as a possible form of treatment, if the proximity to my heart would allow that. 6+ years into the fight it's gotten much tougher. The cancer is relentless and with chemo as my main or only option  it makes it a guessing game as to what will work.

Holidays 2012

We are blessed to have all our kids come visit for Thanksgiving and Christmas. We have family traditions that the girls do not want to sway from and I'm grateful for that. 
Thanksgiving was a fun week with lots of cooking, baking and playing with the little boys. Nolan was just 12 days old on Thanksgiving day. My Mom was here for the week too! Cindy hosted the dinner but we all cooked for the big feast. Thank goodness for my girls Alex and Kristin, because I woke up that day with a bad flare up of my achy joint/muscle problem and was even feeling faint. I didn't even get out of bed until the afternoon. Alex and Kristin cooked all the vegetables and baked an apple pie. I rallied after a hot shower and some Alleve to mask the pain and we went over to my sister's ~ 3:00 for the afternoon. The meal was delicious and the company as always fun! 
I started into decorating for Christmas even before Thanksgiving by putting up the tree ahead of time. I wanted a new theme for my tree this year, a winter wonderland, and was anxious to see it all come together. It turned out beautifully with all white, silver and crystal ornaments to give it that frosty snowy look. (I really wanted a flocked tree, but got voted down on that!)
I decorated the rest of the house that weekend after everyone left and it looked so festive and ready to celebrate! Of course then the shopping began.... some online and some in the stores. We got Kelly and Lincoln an iron bed, Alex a red leather recliner, and Kristin a DY bracelet and Ryan a new Sport Jacket and accessories. The other big hit was a thing called a "fit bit" which tracks your exercise and consumption and sleeping habits. 
Christmas Eve and Christmas day were so much fun with the little boys to share it all with. It was a wonderful Christmas, the best yet!

Gingerbread tradition continues

In December 2010, I wrote about our Gingerbread House party tradition. Well this year, while Nathan was visiting for Thanksgiving, we started the tradition for this next generation. The boys were a bit young at 2.75 and 1.5, but we all had fun anyway. They mostly wanted to eat the cereal, raisins and candy, so the Moms helped out a lot!
I have photos to post and will be back soon to do that!

Back on chemo

I had a CT scan last month in November, after being off chemo for 4 months, due to the Shingles. The scan was not good news. My four lung nodules have all grown, my prior radiated chest lymph node is showing activity again, and I have a new mass in my abdomen near my liver. That was the most shocking to me, a new mass. 
I met with Dr. Movva, my Emory Onc and she gave me the bad news. We talked about different chemo drugs and she thought Sutent would be a good one to start. By the time I had all the pre-tests to start the drug, I already had an appointment with my new oncologist, Dr. Gina D'Amato. (Dr. Movva has since moved on to Fox Chase in Philly). She spoke with Drew and I for ~ 1.5 hours going over all my history. We talked about the possible drugs to try also. Since I had previously been on Temodar + Avastin and it had showed shrinkage,  then stability, we decided to try that combo again. It was a matter of the known (side effects and results) and an unknown. I know I will try Sutent next, sooner than later if the Avastin/Temodar don't show strong results. 
So I'm back on the pills for a week, then the infusion on the 8th day, off a week, then back on. So far so good. I did get nauseous the first night on the meds despite all the anti nausea meds I also took. Oh well, just my body reacting I guess.
I've also been battling a cold/cough for ~ 2 weeks now. (Carter had croup and I couldn't avoid it) I think I'll be calling tomorrow for an antibiotic to get rid of this infection. 
The other strange health issue I've had is a systemic achy swollen joint, sore muscle pain. I went to an Internist to test for what it could be and my SED rate was 75, normal is 30. The tests came out inconclusive for anything specific, so she referred me to a Rheumatologist. I'll be seeing him late January, as that was the first available!
That's the health update for now! Back to Christmas prep and parties! xoxo