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.

Relay for Life

Brad and I decided this morning that we must be crossing the line into veterans of the cancer fight. In the past, we would spend weekends like this pacing the floor and worrying about the future. Yesterday we continued with a much needed playdate for the boys and truly enjoyed listening to the kids talk, watching them play, and Brad even enjoyed the tour he took them on in the woods! Today we are going to 'make hay while the sun is shining' and he is going to go to work while dad picks the boys and I up to run some errands. Then tonight we can make it to church!

Since my mom's diagnosis, I have always wanted to create a team for our Local American Cancer Society's Relay for Life. I have been a part of many relay events in the past, but this local event always looks like so much fun. The first year I attended, Trent was getting ready to turn one and I went for the survivor lap. The following years we go for the survivors lap and tend to linger a little longer, watching the events and visiting the people we know who are members of teams. The boys didn't want to leave last year. They were having too much fun! I can't wait for them to see the track lit up at night with all the luminary bags in honor and in memory of so many people. I would love to have a long string of luminaries in memory of my mom...they will think that is incredible!

So, this is the year! With Scott's help, we chose a team name and I spent some time this morning setting up our page. I would love to invite anyone in the area to join our team if you can...it can be a great weekend of fellowship for a terrific cause! Scott has jumpped in and is helping with some of the footwork and we may try to have a yard sale/bake sale in April or May to raise money for our team.

Our team name is Toni's Terrible Towels and our page is http://main.acsevents.org/goto/toniterribletowels

Have a great weekend everyone!!

Ding! Ding! Round Two!

Well, I found yesterday that I am going to have to start Round 2 with my metastatic brain cancer. It turns out that my MRI from last week showed more areas on my brain. My doctor immediately called in a prescription for another anti-nausea medication and a steroid. And today, dad and I were on our way to Hopkins to meet with Dr. Lim, my brain surgeon and Dr. Redman, my radiation oncologist at Hopkins. The good news to this point is that the new meds seem to be working to control both the nausea (an issue I have been struggling with…I have lost over 20 pounds in three weeks) and the headaches (which became a problem on Sunday) plus this lower dose of steroid makes me hungry.

I don’t have a lot of answers right now. What they really needed was the MRI images so their staff of radiologists who work solely with brain oncology could dissect every area of the pictures. So, I picked the films up on disc from our local hospital and took them with us. Basically there are two spots at the top of my head that are inside the skull but are attached to the skull NOT the brain. There are also areas around the base of my brain. Their main concern is that there may be some thickening of the fluid that wraps the brain, or in laymen terms, the ‘saran wrap’ around the brain. Their team of radiologists will carefully review the films, and then they will give their more detailed descriptions to my doctors who will meet to discuss treatments and then present my case in their weekly brain tumor board meeting on Monday. So, I will probably not know a course of action until Monday or Tuesday of next week. They discussed several possible treatment options today, but I would rather wait until I know exactly what my plan will be before going into that detail. It can get pretty confusing.

I have two follow up appointments and a Faxlodex treatment scheduled at Hopkins on Wednesday of next week so I will be on campus if they need to discuss anything with me in the radiation oncology unit.

Although this isn’t good news, I am feeling better now that I’m not struggling with food and getting sick all the time. Plus the steroid has reduced any swelling and I am not having headaches. I am not able to drive which is the biggest pain in my side. However, I am blessed with retired grandparents who don’t mind taking turns coming all the way out here to pick us up and run us around in the mornings since Brad’s job requires that he go to work very early in the morning. I am also in good spirits as this time I am only fighting brain issues and not tied to a chair trying to recover from a fractured pelvis as well. I am doing great with my cane when I have to walk a lot and around the house I just go it alone! If only I could bend and twist….I would have the cleanest house in Berkeley County!

My dad is going to do our morning run tomorrow, getting the boys to school and taking me in to work so I can get some things done. Trent’s school has an early dismissal on Friday and we had invited friends over for a play date after school. He is so looking forward to it so we are going to continue with it! I hope to get to church this weekend and maybe try to keep the routine as normal as possible. Thanks for all your thoughts and prayers! I will update on our plan of attack as soon as I find out what it will be! Life doesn't stop...it goes on...and sometimes that can be a big comfort!

Hair today, gone tomorrow

I was born with a full head of black curly hair which quickly turned into lush blonde locks that my mom left long and took great care of. I have always had enough hair to cover three heads and didn’t experience baldness until my chemotherapy in 2003. I was 28. Back then it was a cut and dry issue. My doctor told me that my chemo would cause total baldness for sure. So, when it started falling out and making a mess, I had Brad shave it. When the little stubble began falling out, I took a sticky lint brush and rubbed it all over my head. It sounds weird, but it did the trick!

This go-round has been a little different. In January of 2010, when they switched my medication I noticed that my hairbrush started to get fuller faster. Then, with my recent stint with surgery, radiation, and drug change…WOW! It is falling out in droves. My doctor assures me that it isn’t all coming out and that some women see a resurgence of hair as their bodies adjust to the medicines. So far, for me, that resurgence has only happened to my legs. I guess my body didn’t get the memo.

So, after 36 years of having thick hair, I am dealing with something new…thin hair and bald spots. Well, that and clogged drains and vacuum cleaners. I am trying different ways of styling it and Cindy gave me a product that is supposed to thicken it and that helps a little. I need to get in touch with my friend, neighbor and beautician, Jackie, because I am sure she can help with a cut.
Last week on a warm spring day I was driving down the road with my windows down and the radio up. There is just nothing like feeling the wind in your hair! Well, until you start seeing strand after strand being blown off your head and onto the seat behind you. It made me laugh about all the times I raced to the hair dressers to pay to have it thinned. Think about how much money I am saving!

Long time..no blog

WOW! It has been a long time since I updated my blog. For the most part, no news is good news when it comes to me. The last couple of weeks have been a mix of keeping up with the routine, reading a couple of books, and battling some nausea and fatigue.


I've had some good days and some not-so-good days. I've had some off and on swelling of my left leg (the one that had the clot). The doctor isn't worried because the swelling subsides after a few days of elevation. I ended up with an ear infection and am so thankful that Brittany could come to the rescue on a Friday evening to check it out! The on-call oncologist at Hopkins took her word for it and an antibiotic quickly cleared up the issue. I am learning how to deal with the fatigue and the nausea is more of a nuisance than anything.


I did see my oncologist two weeks ago and my tumor markers are elevated. We are hoping that the Faslodex will kick in soon and that will reflect in the next bloodwork. I do have a follow up brain MRI tomorrow and ask for prayers that it is clean. This will be the first MRI I have had since my surgery and radiation.


We are all glad that the days are longer and we are starting to feel that familiar warmth in the breeze that lets us know spring is on its way! Trent came home yesterday, changed into play clothes, and both boys played outside until it started getting dark. I can see my daffodils starting to emerge and I am hoping to put my Easter decorations out with the boys this week. Spring is definately on its way!