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Archive for July, 2011

but back to radiation instead. I had been hoping to have MRI’s follow up on my brain and spine during the week between the two trips but of course with 4th of July and all, that didn’t work out at all. That Friday before we left I finally saw Dr. G the radiation oncologist but there was no way to do anything that day and I was leaving the next day on vacation anyway so we set up for after vacation. I did have some ‘newer’ issues with some numbness and tingling in my left hand. Most of this has been effecting my left side so far and that is kind of helpful as I’m right handed generally and it allows me to drive. My husband was able to go to this appointment with me and gave me a reality check too. They always ask you to rate your pain on a 1-10 scale, and usually at the doctor it is pretty low. He got on me. Ashley, there are days you can barely get out of bed and you sleep almost the entire day and you are taking your pain killers regularly. Would you be straight with these people!

We got back from Pensacola on Saturday and I was at the hospital up the street bright and early Monday morning for MRI’s of my brain and my entire spinal cord. Those tests average over an hour each which amounts to a LONG time in an MRI machine flat on your back. MRI’s are also really loud but I still almost managed to sleep. Radiation oncologist calls that afternoon with results, generally things shrunk – this is good – but there are some new spots on the spinal cord on the back of my neck. That wasn’t an area we were treating and we weren’t really too surprised due to the numbness in my hand. Went and met with a radiation onc at the location up the street and started radiation that day. They are zapping my neck area and they told me I would probably get a sore throat. Nothing last week really but last night my throat started to hurt, it came on really fast and is quite impressive. WOW!

Now last summer I had mouth sores and Dr. B prescribed Myles Mix mouthwash, I think that was for healing. You swished it and let it coat your mouth and throat. It has and antibiotic evidently as well.

Dr. G gave me a script for MAGIC mix. This one is less about healing and way more about comfort. I think it has lidocane in it. I love it, the taste isn’t wonderful but it is better than the other and everywhere it touches goes numb. It only lasts a short time sadly and while I’d like to drink it like the imposter Mad Eye Moody drank the polyjuice potion I’m pretty sure that it would numb things that shouldn’t be numb after time.

Three more days of this and then back to healing but the fatigue from radiation can often last for months, which puts me through the rest of the summer and into fall. UGH. I did go to the grocery store today and did it under my own steam, not with a scooter, I was slow and I’m exhausted but I did it. No gym today.

Some specifics on the other stuff from the MRI’s. The 3cm (about 1in) spot in the middle of the brain was down to about 2cm (so about 1/3 smaller). The 1.4cm spot in my front left lobe is down to about 7mm (so about 1/2), the 9mm spot on my conus (bottom of my spine) is measuring about 6mm (small and about 1/3 smaller). There were little spots in the brain and along my spine, many of those disappeared and the others shrunk.

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There is an amazing organization called Inheritance of Hope. Their mission is “Every Family Deserves a Legacy”. They are an organization that sends families where a parent has a life threatening illness on memory making trips. I had sent in an application for us during all the radiation and gotten a note saying we were on the wait lists for this year. About a week later I get a call and there has been an opening to go on a retreat to Disney about three weeks later in June! I cried. We went. Sadly my husband couldn’t join us due to circumstances at work but my mom went with us. They also extended our airline tickets a few days and with some help from some other family we were able to go down early and go to SeaWorld and Universal, neither of which I had ever been too. I LOVED SeaWorld! We all did.

My Dad and younger brother ended up driving down and going with us those first few days due to some miscommunication I had about getting help with the kids, SO we spent three days with Grandpa and Uncle, they left, Grandma came and we spent almost four days with her! It was a great trip. My family once again was awesome and we are still so blessed.

Inheritance of Hope and their volunteers were amazing. Jessica was with us and I mean with us. She went on rides, made sure we had our tickets, our disabled information so we didn’t have to wait in line, helped with food, the kids, everything. The organization made sure I had an electric scooter rental so I could get around, they provided all our meals during the retreat days and had Mickey come to dinner with us the first night and all the kids got to meet him.

We get home from that trip, sufficiently exhausted and had about ten days at home to recoup before we were off with family again. My fabulous sister rented a seven bedroom home on Pensacola Beach complete with its own pool and across the street from the beach itself. She arranged for the family from here to drive down (about 11-12 hours) and also for some of the family from Texas to drive over (about same drive) and 17 of us holed up in a house on a beach for a week. The kids (six of them aged five to fourteen), the cousins (three and two spouses) and the parents (the other six). Overall we did pretty well, there is always drama with that many people especially relatives but it was great!

We had some amazing food. Fortunately I seem to be from a family of good cooks. We had Bbq Ribs, Chicken and 40 Cloves of Garlic, Pork Roast and we did go out a bit. The parents went out one night and the cousins took the kids to Landshark Landing (a Buffet Restaurant on the beach). The next night the cousins went to dinner to Hemingway’s and had a trigger fish special with artichoke hearts and spinach with garlic mashed potatoes that was really good.

My sister and her partner brought down a sailboat, a Hobiecat they recently purchased. Between weather and a mishap it didn’t get quite as much use as I think they would have liked. I didn’t ever get out on it, neither did my son and I don’t think one of the other kids but it really is okay, everyone had a fabulous time regardless. There was a huge pod of dolphins that went past one morning and that is always cool to see, especially for kids.

Mom and I flew, I could never have done a car ride that long, it would have been painful and exhausting. The last night they took us to a hotel near the airport – everyone was leaving really early and no one had room in their car the next day. Our flight wasn’t until the afternoon that day so we got the opportunity to see even some other cousins.

The family we were with during the week is my Dad’s side. The cousins we saw on Saturday before we left was from my Mom’s side of the family. My mom has a brother and he has three sons raised in Alabama and Pensacola. His middle son is in the Army and leaving for Korea in several months and got married recently. He is home from Arizona right now and wanted to show his new bride beachesw on the East coast as she was raised on the West coast. His mom lives in Alabama and they were visiting her so they drove to the beach and and happened to be staying close by. So my cousin came over and we got to see him for the first time in years – he is such a man now – and meet his wife and see his mom who we also haven’t seen in years. It was very nice, we didn’t manage to get in touch with some other people nearby it would have been good to see but it was a busy week and I can’t wait to go back!

I cannot believe how close school is, my daughter still has a week a long camp, we have passes to many local attractions and I’m looking forward to using those. We have a lot we want to do but I need to pace it.

I did come home and have scans this past Monday, mostly better, treating some new things on the back of my neck but I’ll elaborate on that next time.

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