It seems a little weird to me that I haven’t blogged since we found the lesion on my Brain. What, what you say. Well for those of you who don’t know we found a lesion lying on the Dura Matter of my brain in late July. With the exception of a couple spots on my liver that have since resolved, we had considered my disease as bone only; as bad as bone mets are, people can live for years with bone only disease. So what does this mean now? I wish I knew. It sucks when your new Radiation Oncologist says, “I have seen a lot of bum deals, but this is the worst bum deal I’ve seen in a while.” He is referring to the fact that I am only 30 and have a young family, not that I necessarily have it worse off than his other patients. He is actually really great Doctor. I have nothing against my first radiation oncologist but I never bonded with her and I didn’t feel like she really considered the questions my husband and I had. Anyway the way the lesion is spread over the left side of my Dura matter of my brain as opposed to a focused tumor in one or two spots. This means surgery is not currently an option. Neither is focused radiation, (which means they focus on just the tumor with the radiation stream) Instead, I get to do three weeks of full brain radiation. I have finished one week. This is a onetime deal. We don’t get to go back and do full brain radiation again because it is too dangerous. I maybe have one week left of my hair, (which I bleached last night and plan on one more pink hoorah today). I can tell my head already feels burned. My tongue actually feels scalded. My taste buds are off (sweet doesn’t taste right) but they have me on steroids to relieve any swelling so I still want to eat all the time. The steroids have made my face round which will look even rounder when I am bald. My face is actually puffy enough that my glasses are too tight but I am scatter brained so I keep forgetting to have them adjusted when I am at Costco. I may or may not get increasingly more absent minded. I have already noticed that typing is much harder, like I was good at it before. But the most common significant side effect is fatigue. I had been feeling tired to begin with and I have noticed a little increase but so far the steroids seem to be giving me enough energy to get by. Oh actually, the funniest side effect (if you want to call it that) is the fact that during radiation that hit some of my cranial nerves, (it doesn’t hurt) but while it is happening I smell Jack-o-Lantern. Like the way it smell after the candle has been in it for a little while. This is OK. I don’t mind it. I love Halloween so I guess it is appropriate. But even with these side effects I think I am managing very well so far.
I also need to use this platform to thank my sister In-Law Brenda. She has been and is amazing. She coordinated to have dinner brought in the whole time I am on Radiation. It is hard for us to accept this kind of help; it feels sometimes like I don’t need it yet. Maybe I don’t want to need it yet. But the truth is it has been an incredible help. Thank you from the bottom of my heart to all of you that have brought and are still bringing dinners. Also thank you Darcy, you have always taken care of me but the amount of help you give my little family is incredible; always watching my daughter, checking in on me, just hanging out with me. And thank you beyond words for all of the work you have done and are doing to throw a benefit for me. Your kindness is overwhelming. The love people have is beautiful. It makes me feel like I must have done a few things right in my life to have so much love surrounding me. These thank you’s are of course not limited to the two of you, Thanks to everyone helping out, watch Makena, those checking in. Even those of you that I know are just waiting in the wings for me to ask for help. I love all of you so much. Even the love sent from my little monster family who I only know through online interactions build me up on a daily basis. All this love carries me through and keeps me wanting to fight, fight, fight.
So how do I feel about all this? It depends on the moment I guess. I have been through a huge array of emotions; crying to start, yelling a little, cuddling with my husband, fear of course, worry, upset stomach, ignoring it, thoughts racing, angry, and yes even peace. One of the biggest things that pissed me off is I am designing for two different charity fashion show, and coordinating a large Charity event for a domestic violence shelter and I am terrified I won’t be able to produce. Crazy huh? It is funny how much of the mental fight involves me forgiving myself for not being ‘the perfect cancer patient.’ Everyone involved with these events have been amazing, understanding and supportive. It’s not like I am going it alone. Any way I made huge progress last night. My husband worked a grave yard shift, and Makena went to Grandma and Grandpa’s for the night and a sewed till mid-night. It was the first time I realized that I am really going to pull this off.
Well I have rambled for quite a while now (another side effect of steroids) so I will sign off for now. And as always I will write when I feel so inspired. These blogs aren’t worth anything to me or you if I force myself to write on any sort of a dedicate schedule. Thanks for reading my ramblings.
My chubby self around 9 or 10 months