The new direction...

So, this stands to be my longest blog yet. I will try to keep it as short as possible and answer as many questions as I can. Saturday went along as planned and I felt so accomplished! Working on the relay for life stuff, running errands, going to church, it all seemed so normal and I was checking things off my list without even being able to drive. Saturday night I was sick on my stomach, again, so I felt a little wimpy on Sunday morning, but nothing too bad. Brad went into work and as the day progressed so did a very strange and very strong headache. By early afternoon I called Hopkins because the pain was escalating. After checking my file, the doctor urged me to go quickly to the local hospital because with my issues she was afraid I might have bleeding on my brain. Glen and Cindy came to sit with the boys, dad picked up me and we met Brad at Martinsburg City Hospital where they were well aware of the situation and waiting for me. Some blood work and a CT scan revealed no bleed and soon after IV medication, the pain subsided, and I was released to come home. I owe a special thank you to everyone who zipped into action and Michelle, who ran all the way out to the house with dinner for the folks out here! After all the excitement, I was beat on Monday so Dad was granted the chauffer for school and the babysitter for Ian and I for the day. He entertained Ian so I could have a good nap and Brad brought us all home after work for a relaxing evening! On Tuesday it was Glen’s turn to run the morning ride and he took me to work so I could get a few things done. Still a little tired, waiting on news from Hopkins, and on the dreaded steroids, I made it until the afternoon when my tummy troubles returned and I had to call Glen back for pickup. So, when Brad gently nudged me on Wednesday morning to let me know it was time to get up, I rolled my head around feeling quite like a dish rag. There was just no energy left. I honestly thought about flat out refusing to move. Handing him a note saying I was comatose and a shower was out of the question actually felt, well, not out of the question. I did get showered, put on makeup, fixed what’s left of my hair, put on some clothes and was somewhat sitting upright when my dad came at 6:30am to pick me up. I got to kiss the boys goodbye for the day and they got to eat a sugar free popscicle for breakfast. Hey…what’s good enough for mom! It was a LONG day. LONG. And this is pretty much the medical rundown. The concern with the MRI of my head was potential swelling present in the membrane around the brain. This is what the team members of the Tumor Board at Johns Hopkins were looking at during their Monday meeting. It was determined that the swelling is not present at this time and a new MRI should be taken in two months to follow up. This is perhaps the best news since this kind of swelling typically means that the spinal column is involved and that is bad. Please don’t google it, call me, email me, text me about it because all I need to know is that bad does not mean good. Another issue with my head is a lesion that is actually inside my skull but on the skull itself. This is considered a continuation of the bone metastasis that I have had since 2008, but it is a new area. Given that information and the rise in my tumor markers, along with some other indicators, my oncologist and I have concluded that the Faslodex drug that they started trying on me in January is not working. We are switching drugs and this time I will start a chemotherapy drug. It is a drug called Xeloda. It is an oral medication that I will take at home with a cycle of 14 days of drugs, and then 7 days off. Like all drugs, some patients respond rather well and some do not. It is as plain as that. The main side effect is hand, foot and mouth disease. Yeah, I know, gross. Basically with this you get sores on the palms of your hands, bottoms of your feet and all inside your mouth. Of course, diarrhea is also tops on this list of side effects as is weight loss, hair loss, la, la, la. They will adjust my medicine dosage to try to find a balance between what works and what side effects I can tolerate. I have to get a CT scan and bone scan next week and they will act as my baselines so as we go through the next few months, as we see how Xeloda is going to work for me. Then I had a follow up with Dr. Weber, who is my Oncology Orthopedic Surgeon. She took a look at the old pelvis fracture from way back in October and was super impressed with my healing there! As always, it was good to see her and when she noticed I wasn’t using my right shoulder, she asked if she could take a quick xray and check it out. The shoulder has been an issue since November, but I have had so much going on, that it has taken a back seat. But she recommended having the radiation oncologist here take a look at the socket, so I will add that to my list. Maybe with some radiation, it will function once again! It was a long day for this tired, cranky cancer patient. My dad patiently brought me safely home to Brad and the boys and I was so glad to sit in the family room and listen to the stories of their day. Brad grilled burgers in the snow (yes, it is the end of March and it was snowing) and I got some time to relax. Although I am tapering off the steroid, it still makes it hard for me to sleep so I thought I would try to type out this blog before calling it a night. When I started getting bored while typing the medical part, I switched over to check out my Relay for Life page. It turns out that while I have been going through this really yucky week, my friends and family are reminding me of why I can do this for another day. I am so humbled to see so many team members and so many donations. I really don’t know what to say but ‘thank you’ for helping me remember how proud my kids will be when I can make it around that survivors lap again this year.