It is with a heavy heart that I report Ashley passed away on August 17, 2011. After fighting hard for over two years she lost her battle with IBC. Thank you to all who supported and encouraged her during her fight. Donations made be made to Hospice of Cincinnati in her name.
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.
For most of 2010 I was on chemo, from February until just before Christmas. It was pretty powerful and about a year ago I asked my oncologist for a prescription so I could get a handicapped/disabled tag from the BMV. It was because I was so exhausted I just couldn’t make the distance from the parking lot to inside, do what I wanted and then get back to the car without it knocking me out for the rest of the day. I decided it wasn’t worth it to use all my energy just trying to get into wherever I wanted to go. I still have it and I use it, but when I feel good – I don’t. I’m young and often have at least one child with me when I go somewhere. When I get out of the car I see people look, occasionally I could even see the “Why the heck does she need that, bet it belongs to one of her parents or something.” I don’t worry about it, of course now that I’m bald again no one even looks at me funny.
Since this lower spine radiation though things have gotten more difficult. I am tired, have no stamina, have lost muscle and strength and the nerves going into my legs are not behaving the way I want so my left leg isn’t responding properly. All this means I can’t walk through a store for much distance so at places like Kroger and Target I use the little scooter things they have with the baskets on them (just an FYI, the ones at Kroger are much faster and more maneuverable). And if my 5 year old, who is maybe 40 pounds is with me, he sits on my lap. Again, I’m bald so mostly people look at me with pity (UGH) and don’t bat an eye. I HATE riding in those things. If it wouldn’t wipe me out for next 24 hours I’d try to walk it. Riding in one of those things makes you FEEL disabled. It is even hard to sit up straight, I do but I understand why so many do not. It just saps you, it makes you feel less than able.
So my dilemma is this. My son finished preschool this week, my daughter gets out of school next week and then I need to be able to keep up with them. Not that I don’t now but we have memberships to the local museum, zoo, amusement park, pool (monster pool), and places we want to go. There are events we want to go to and festivals and shopping and even just down the street to the park without having to drive. Which means I’m looking at a little personal scooter, some of them come apart so I could put it in the back of the suv. I’d rather have something cool like a Segway but that requires standing the whole time. I really am hoping and planning not to need it for more than a few weeks but they are $100/week to rent and I can find a used one for around $500. If I were to need it longer I’d regret not getting my own. I kind of want to just go ahead and do it, so that I am prepared and can just go, but at the same time I don’t want to need it! I want this to be a blip on the radar and have my legs working the way they should. Last summer I missed a lot, or felt like I did because I got sick and was weak and unable to do the things I wanted for most of June, I don’t want to repeat that. I don’t want to feel like I missed stuff or my kids didn’t get to do things because of me. So I’m going to go and look at them and figure it out from there.
The last two months would have been impossible without my Mom and Dad. Heck, I’m not sure how I’d have gotten through the last two YEARS without them. Mom has been to just about every doctors appointment I’ve had since the first week and Dad had been at most of them. If he wasn’t at the appointment it was usually because he was taking my son for me. They drive, pick up lunch, pick up kids, take me to run errands, let me nap… I am so blessed and fortunate to have the both, to have them both close by, for all their support in so many ways. Since I started radiation in MARCH at least one of them has been here everyday during the week, to help me get the kids up, fed and off to school, keep me fed and rested and take me to treatment, get kids picked up and together until my husband got home and if my husband had something he needed to do that evening, Mom or Dad generally stayed and helped get everyone to bed.
Keep in mind, my parents divorced when I was 10 and it took a long time for us all to be close like we are – and we are unusually close for a family that has divorce in it. My Mom lives about 10 minutes from me and she still works full time. Fortunately she is in a job that allows her to work remotely and they have let her work from here. My sister installed a secured wireless network in our house as soon as I was diagnosed so anyone in the family and my husband could all work from here. Mom is an early riser and has gotten here and often actually cooked breakfast, and given how my daughter loves bacon and they both love french toast and pancakes, that has been popular.
My Dad lives about 15 minutes away with his beautiful wife and my teenage brother. Dad retired right after I was diagnosed and while he has stayed busy he is also always available, all I have to do is say the word. Dad, one of his friends and my uncle from Texas did a ton of the work on our kitchen last fall. He has a great time with the kids and he has come over and gotten them off to school and sent me back to bed, taken me to the grocery, the doctor and anywhere else I need to be.
I know that either of them would give anything for our family to not be dealing with this. I know it is hard for them to see me when I am feeling sick and I’m sure they hate walking into the doctors office just as much as I do. Don’t get me wrong, my doctors and nurses are great, they take excellent care of me and it isn’t anything personal but I’d prefer to not need to know any of them. Mom and Dad have been amazing through all of this and are such great role models for me. You do what you need to do because you are the parent and that is how it works. I know they love me, I tell my kids all the time that they will have some idea of how much I love them when they finally become parents themselves. I look at my kids and I know how much my parents love me. It truly is walking around with your heart outside your body. I thank God often that it is me and not one of my kids who is sick, but for my parents, it is their kid.
We are kicking it out. NED is still my friend. I’ll meet him – SOON!
So I did nine consecutive days of radiation, including a weekend, then they decided that I’d wait and do the last one on Monday the 9th. Sunday the 8th was my sister’s birthday and the day I was diagnosed two years ago. And this year it was Mother’s Day. I have another close friend whose birthday is also the 8th, so a lot going on there. I had bought tickets to see Stomp for Mother’s Day, several months ago when I was expecting to feel fine. Instead I had finished nine days of rads, and then had a wonderful Saturday at a benefit that some amazing friends put together to raise money for me and my family and I am so grateful for that. Ran around Sunday and then last rads on Monday. Who ME? Overdo?
Slept Monday night, through to Tuesday morning and then daughter was home for two days with a sinus infection. Wednesday I was falling apart and ended up at the ER getting fluids. I was just getting to the point where I needed to do something and that made a huge difference. Part of it was, I think, that when we radiated my lower spine we were also hitting more digestive area, stomach etc and food and fluids were a lot tougher to handle, I had also been in more pain and on more medications and had a tough time taking my supplements. Who would have thought 10 treatments on my back would be harder than 20 on my brain? It was though. A lot. Radiation just kicked my butt this time.
So now, on the 17th I’m a bit better. I’m still really tired, only one pain pill at night and one during the day and they are only the 4-6 hour ones so I’m doing okay. I can’t go far walking wise which is frustrating and sometimes frankly, discouraging/humiliating/embarrassing, but we do what we need to do. I can tell you the little motorized chairs at Kroger are a lot faster than the ones at Target. Those little motorized things at Target just crawl! I may have to look at finding a scooter or something so that I can do the things I want to this summer with my kids but I’m working on those nerves heading into my legs and on my strength so maybe I can avoid it, or just keep it as a backup option.
My stomach stuff is subsiding so I can get back on better track with my nutrition and supplements, sometimes we just have to do what we can and then get back. I’m also getting back to my mind and working on stress, anger, frustration, and get my body and mind to relax. I’m going to be here awhile!