In July we moved to Wilmington, into the apartment at my parents house, to save some money to pay off all the medical bills, and regular bills, we accrued over the past year. We were slowly finding our feet again but we kept waiting for the floor to drop out from underneath us again. Too much had gone wrong in the past year for us to feel secure in anything we did.
We celebrated Grace's first birthday, and I'm afraid I may have gone overboard, which I have done every birthday and holiday since. I think I was trying to make up for not being able to do much for Christmas and Easter that first year. My girl is definitely spoiled, and was beyond spoiled that first birthday. I feel like I can spoil her because she's my one and only, and well, I kind of feel bad that she doesn't have any siblings.
I spent all of July unpacking, organizing and setting up our new home. I was determined to put the past year to rest and move on. I just wanted to forget everything we had just gone through and pretend life never got interrupted like that.
I'd like to tell you more details from that year, but really all I remember is sleeping and being in the hospital or in the treatment rooms. While in the hospital I remember being upset and mad that I was stuck there, and my poor nurses took the brunt of it. In one stay I refused to talk except to say "I want to go home" and in another stay I remember just crying and pleading to go home the whole time. I refused to eat, and refused to do much of anything they asked of me. I was always in the hospital it seemed and I was tired of missing out on time with my baby. It really was more than I thought I could handle. If I could remember all the nurses names I'd go back with flowers for all of them, and great big apologies. They really were the best care team I could have asked for.
I remember all the pokes from needles for IV's and blood draws. I really wish I hadn't of been so stubborn and had gotten a port when I first started treatment. It would have saved my veins, which are now shot, and so much time. I wish I wasn't stubborn about going into Boston a few times, because really, that was where I got the best care. That was where my doctors from DFCI could advacate that I should be released when my counts reached just over 900 instead of the 1k. But you live and learn right?
My doctors really are amazing. Dr Crystal would quickly became my biggest advocate, and supporter. He was the fellow working with my doctor, but he promised he'd be with me to the end. I think he regrets that promise now. I've called him more times than I can remember since chemo ended. Every time the pain flared up to the point of making me sick I'd call him for advice. I've been inside ER's more times in the past 3 years than I've ever wanted to be in my life. I've been in more CT's, MRI's, and X-rays than I'd ever thought possible before all this happened. Early on I learned how to sleep through most of the tests, and the shorter tests were over in a blink of an eye.
During treatment I had the honor of meeting the most amazing girl ever. We had the same doctor, and the same cancer, so our doctor set up a meeting between us. I spent a lot of time talking to her about a lot of different things. We texted constantly and we were instant friends. Unfortunately, Maggie didn't win her fight, her cancer was too far advanced. But she was always strong and optimistic. She had a beautiful soul, and was one of the best friends I've ever had. I miss her terribly and wish she was still here.
After treatment ended I still had the numb feeling in half my face. I was told that it was the nerves that had been damaged by the tumor, and by surgery. If it didn't repair itself in 6 months then it was likely permanent. After awhile the pain set in. It was a radiating pain in half my face and head. Some days it was so awful that I couldn't get off the couch, and I'd sleep to escape that pain. MRI's and CT's would show nothing, so I was sent to a neurologist. After I met him, chatted with him and he did his exam it was determined I had Trigeminal Neuralgia. After some reading I learned that it was a permanent condition, that would most likely get worse, and it never got better. I was put on meds to try to control the pain, and after 2 failed drugs we found one that works.
I never in my life have taken so many meds on a continuous basis. I had to set up a weekly pill container for morning and night, thats how many I take now. But still, sometimes the pain is so awful it stops me in my tracks. I've given up complaining about it because I'm tired of hearing me talk about it, and I'm sure other people are tired of me bitching about it. There's only so much I can say about it before its like beating a dead horse. At the end of 2011 I forgot to pick up my pain management meds and didn't realize it for about a week or so. Then it hit me, I wasn't in pain, even without the meds! But how was that possible? It wasn't supposed to get better, just worse. Well I wasn't going to look a gift horse in the mouth, I'd just accept the new twist and move on.
In April 2012 the pain returned, worse than ever. MRI's and CT's still showed nothing, so it was just the trigeminal nueralgia acting up. I went back on the pain management meds, but they still need to be tweaked, they aren't quite strong enough at the current dose. Some days the pain is still super bad that I have trouble focusing on much of anything.
My vision would return to normal after surgery, only to blur up on me again a few weeks later. Visits with eye doctors would show that I have scar tissue on my cornea, and I now wear glasses to help correct it. The vision is still blury and my eye gets exhausted if I stare at one electronic thing too long. Computers and video games get about an hour before my eye is so bad that I just want to close it for awhile. I miss my perfect vision and I sure as hell hate wearing glasses all the time. But if I don't wear glasses my eye hurts and waters a lot. Even now, when a scene on TV shows something to do with the eye I can't watch. Whether its contacts going in, or the allergy commercials where they start all fuzzy, or someone being poked or stabbed in the eye I can't watch it. My eye starts hurting and watering like crazy.
I would start seeing a psychiatrist to manage the bipolar. I've been prescribed 2 different meds that are still being adjusted to help me live life on a more even emotional level. I still jump around a little, but its not so bad anymore. Actually, since being on the meds I've been able to go back to writing, something I haven't done in 10 years and I'm super grateful for it. I love to write, I used to write everything down in a diary, and I used to write a lot of poetry. Granted the poems were very dark and sullen, but it was decent poetry. I won a few contests and was even published in a couple different books. I had teachers that encouraged me to write more, and one that even submitted my stuff into contests for me.
I also would end up seeing a fertility specialist who told me it would be impossible for me to get pregnant on my own, but with some hormones and IUI or possibly even IVF I should have no trouble getting pregnant. I left those appointments with more hope than I've had in a long time. I won't say I'm ready to have another child, or that I ever will be. Last time I had a kid I ended up sick, and it was hard when she was just a baby. How would I do it with a newborn and preschooler this time? And its not to say it would happen, they say it was just a fluke getting cancer while I was pregnant, but I still can't help but think about it happening again. The idea scares the hell out of me, and I'm not sure I'm ready to take that risk. Some days my heart aches for another child, and every time I hear of another pregnancy or birth it breaks a little more. I do desperately want another baby, I always wanted 2 or 3 little ones of my own. So yea I want another one, but the idea that I could quite possibly become sick again is more than enough to hold back the desire to have more.
Truth be told I still cry over my hair. During treatment everyone kept telling me how curly it would be when it grew back in. What once used to be thick curls is now fine and straight. Its too short to curl with a curling iron, and it definitely doesn't curl up with mouse like it used to. It's just straight. Except for my bangs, which has a curl at the scalp and creates a "wave" like my Grandfathers did. At least it's not white, I think. I keep dying my hair trying to find a color I'll be happy with but it's just not happening. Then again, I've never been happy with any color.
Everything has changed now. I've done more than my fair share of growing up and changing. I'm somebody's mother now, and she's counting on me to be better and do better than I ever have. I wish I could have the safety of never having been sick, and I wish I could have the knowledge to say I'd never get sick again, but I don't know what the future holds for me. I still miss Maggie terribly, and I wish she didn't die. I still don't understand it, and I'm not sure I ever will, but I'll always remember her, and treasure the time I did have with her.
We're getting ready to celebrate Grace's third birthday and well, I really feel like everything's going to be okay now. Even if it means I have to take 10 pills twice a day.
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