Saturday, March 28, 2009

A day off from treatment

It was very nice to not have treatment today. A dear friend of ours lost her mother and we attended the funeral today. David also was sick earlier this week and we were so happy to have 3 additional family members in town to help with taking care of a sick boy, getting to all of my appointments and just watching our boys so we could help our friend through this difficult time.

I need to sleep a lot but am able to still enjoy my wake up times with the boys.

Wednesday, March 25, 2009

Brain Fog

I have been asked a lot what it is like to get these treatments. They aren't horrible, but the side effects are upsetting. They have me in a fog a lot of the time, with moments of clarity throughout the day. I feel like I have shown up at the party and am physically standing in the middle of it, but not a participant. Those around me have said they don't notice a difference in me, but I do and it is upsetting. The chemo and radiation I have had before had their definite downfalls, but this is a different beast. I feel like it is affecting the me I know. I pray that when the cancer is gone and the radiation treatments are done, I will be back.

Monday, March 23, 2009

Encouraging story

We enjoyed a great weekend - taking pictures of mommy with hair and celebrating Dave's birthday. David said to me when he came home from school today - "I see you still have your hair!" I told him I didn't know when it would come out (maybe a couple of weeks?) but he might leave for school and I have it and then come home and it is gone! He always draws pictures of me with spiky hair and I told him I don't think there will be spikes left this time.

I was encouraged by a story of a woman around my age, diagnosed with breast cancer 1 month after her 5th child was born and then found out it had metastasized to her brain when the baby was 5 months old. That baby is now 5 years old and she has been on a preventive drug ever since with minimal difficulties.

Friday, March 20, 2009

Radiation update

We got some great news today - no signs of cancer elsewhere in my body! The Herceptin seems to be doing the trick. So, I started brain radiation today. Little scary - I sit under a mask looking much like Jason and get my head cooked. The treatment isn't long, just a little uncomfortable. Hair loss will take place in a couple weeks and apparently take a lot longer to come back than with chemo. I am scheduled for 15 treatments (5x/week for 3 weeks). It will take a few weeks following the radiation to see if the cancer is gone. Hard to believe that this time last Friday, we thought I just had a bad headache.

Sunday, March 15, 2009

Unbelievable news

Where to begin? . . . Last Wednesday, I experienced vision problems while on the computer. My peripheral vision started flashing and it eventually became my full range of sight. Dawson was sleeping and Dave was out with David at the time. I thought the best place to be (so I wouldn't harm myself or anyone else) was in bed. I checked on Dawson first and couldn't see him lying in my bed. I knew Dave and David would be home soon. Even when I closed my eyes, the flashing continued and then a massive headache followed. Migraine, right? Unfortunately not. I debated on whether to call my doctor and wanted to downplay this as a little headache (I was perfectly happy forgetting about the flashes) and realized that I don't have "M.D." after my name and I called his office late Thursday afternoon. I went in for a CT scan of my head on Friday.

We have just returned from a whirlwind of information from my oncologist and now know there are 4 tumors, 2 of which are near the occipital nerve which may explain the vision issues. I had another episode of flashing this morning while out on a walk with Dawson. We now have a week full of tests ahead of us to see if the cancer is somewhere else also. I started taking a steroid on Friday to reduce swelling in the brain and received a dose through IV today. The treatment plan for this is whole brain radiation. We meet with the radiation oncologist tomorrow and it appears that the radiation will begin in the next week or so. I also meet with my ophthalmologist tomorrow to look further into the vision problems to see if I am having optic seizures.

Now that I have all of the technical stuff off my fake chest, let's make it personal. I have been feeling fantastic! The best I have felt in the past 2 years!! How can this be? I drove to Williamsburg last weekend and had no problems. I sat in my boys' room for hours last night and just wept. We had to have an open conversation with my oncologist today about how this is going to affect my mental capacities. Whole brain radiation can cause "early aging" of the brain and I may qualify for a clinical trial to try and reduce the short term memory loss. I just keep thinking about my children and the fear of becoming someone they don't recognize. The oncologist showed us the scan and doesn't feel that any of the tumors are pressing on areas that could cause this. But this is my brain we are talking about !!!!!

I have thought about so many things - my 3rd hair loss, my brain getting cooked, my inability to drive until all of this gets under control, the side effects of the steriods - including weight gain (which really makes me angry because I just worked my tail off to look good again) the time and energy that is taken away from my family so I can go to treatments and recover from them and my head is spinning. We have asked God a lot of questions. But, I can see His grace in the handling of all of this - the timing of the vision loss, our trip to Disney, the return of my Ipod (I lost it late last summer and we just found it again and it was my sanity through radiation the last time).

I know this may seem like rambling but it is only a few of the thoughts raging through this cancer-infested brain of mind. I received Herceptin today and the male nurse was making a joke and said he didn't want my head to get too big - now that was bad timing! We will update as we know more info.

Please pray for no more cancer. Please pray for a complete and miraculous healing of the cancer that is present.

Tie-dye fun

So, we tie-dyed with our boys this afternoon. David decided to do a pillow case since he won't grow out of that and whatever David does . . . Dawson does! It was a lot of fun and my fingers are stained from the paint. I would recommend it on a day when you can do it outside (not cold and rainy like our day)!