I have to say its been one of the longest and one of the hardest 2 months of my life.
Scott got laid off on November 2 and we lost our insurance right away. Cobra wants 1700$ a month to continue our insurance, which obviously we can't afford. So we applied for mass health, but we haven't heard anything yet. So I've been without medication for 2 months now.
My lyrica ran out right away and it's been an excruciating 2 months. You thought 1700$ for INSURANCE was bad, how bout 1000$ for a 30 day supply of ONE drug. Yea needless to say we couldn't afford that either. So no lyrica for me. I also ran out of all my bipolar meds and I've been feeling like a 13 year old girl going through puberty. For the first time in forever I've actually realized that being on my meds is a really, really good thing.
Some of you know I get disability, so I was able to apply for Medicare prescription coverage, which starts on January 1, so the end is in sight!! But it's been the longest 2 weeks of my life since being approved. I figure if mass health denies us, I'll sign up for Medicare part B (I already get A which is hospital stay coverage, and now D which is drug coverage, B is for dr visits and whatnot). Then I can find a cheap plan for Scott and Grace somewhere. But I have my next set of scans in February and need coverage by then.
We had an amazing Christmas! It was noisy and busy but it was awesome! Grace had her school Christmas party the morning on the 21st (Friday) and then that night I took Scott to see Cirque Du Soleil, the new movie that just came out. And boy it was amazing! Saturday we went out to dinner for my brothers birthday, Sunday we had a party at my aunts house with my entire crazy family. That night my mom and I went to see Trans Siberian Orchestra, I had bought her tickets for her Christmas present. Another amazing show! Then Christmas eve at my moms house with my brothers and their wives and kids. Christmas day was at home in the morning then at Scott's aunts house for the night with his family.
So yea it was a crazy busy holiday, but I wouldn't trade it for the world. I got to see all the people I love and adore and Grace got to spends time with all of her cousins, it was so amazing.
So while 2012 started off promising and hopeful, things turned around in the end, so once again I end a year saying "While this year ended on a bad note, the next year can only get better!"
I'm determined to get back on my meds and become a better person, to work through all the damage the past 2 months have undoubtedly caused in my life (although I must say I am proud of the way I stood up for myself in a rational and reasonable way to my brother, without throwing a fit, a threat or any real drama). He made a comment, trying to be funny, that hurt my feelings and I just turned around and was like "I know you think you're being funny, but really it hurts my feelings". I must admit I later cried about his comment, because in all honestly I sometimes feel like my brothers don't like me and I feel like they treat me as a joke. I sometimes even question what I may have done to make them hate me so much, but I can never figure it out.
Someday I hope my brothers and I can have a good relationship. I adore my brothers and think the world of them, but when they make such hurtful comments in jest I wonder if they really are just kidding or if they mean it. Do they really think so little of me?
The new year holds so much promise of things to come, I really hope we see a turn around soon. But if I'm being honest then I must admit that I'm still waiting for the other shoe to drop. I still feel like something bad is out there, lurking around the corner waiting to grab me.
Surprisingly this was written before the new year started, now I understand why I felt like something bad was going to happen. Miss you daddy.
Thursday, December 27, 2012
Friday, November 2, 2012
I went in to see my primary a few weeks ago for pain. This always intense, sometimes excruciating pain by the surgical site on my head. He felt around a bit and referred me to a specialist.
Scott got laid off Wednesday. And no I didn't get distracted from my story, this is part of it. After he was laid off I started freaking out, complete with flashbacks to the last time he got laid off just before I got sick. I was starting to fear my life was going to repeat.
Thursday I met with the specialist. She felt a lump and wanted to get an MRI done and it was scheduled for the 10th. She told me that I should schedule a visit with my oncologist for results, to up my lyrica and go back to her in 2-3 months for a follow up.
Friday I called Dr Crystal and spoke with him. He moved my MRI up a week and told me he'd call me right after he read the scan and let me know. He also said he expected it to be abnormal based on everything he heard and read.
Saturday I could barely sleep that night. I spent most of it watching Grace sleep. My greatest achievement, the best part of my life. I laid in bed watching her sleep, crying off and on. Then suddenly my mood changed. I hit my fuck you cancer mood. I went in for my MRI at 12 and spent the early part of my afternoon in a machine that made more noise than I thought my head could handle. I was waiting for my head to explode. It was the worst MRI of my life. And I won't even talk about them trying to get the IV in first.
That afternoon and evening were the LOOOONGEST hours of my life. I left my MRI at 130, and tried to patiently wait for the call, I really did. I distracted myself afternoon and evening. I cleaned, ate, watched a movie and read stories with Grace.
Finally at 445 I gave in and paged him. I just couldn't take the suspense any longer. And I'm happy to report, for those that didn't know about this drama until now, that I am still cancer free! Moving onward and getting closer to the 3 year mark.
So with that being said, be well all.
Scott got laid off Wednesday. And no I didn't get distracted from my story, this is part of it. After he was laid off I started freaking out, complete with flashbacks to the last time he got laid off just before I got sick. I was starting to fear my life was going to repeat.
Thursday I met with the specialist. She felt a lump and wanted to get an MRI done and it was scheduled for the 10th. She told me that I should schedule a visit with my oncologist for results, to up my lyrica and go back to her in 2-3 months for a follow up.
Friday I called Dr Crystal and spoke with him. He moved my MRI up a week and told me he'd call me right after he read the scan and let me know. He also said he expected it to be abnormal based on everything he heard and read.
Saturday I could barely sleep that night. I spent most of it watching Grace sleep. My greatest achievement, the best part of my life. I laid in bed watching her sleep, crying off and on. Then suddenly my mood changed. I hit my fuck you cancer mood. I went in for my MRI at 12 and spent the early part of my afternoon in a machine that made more noise than I thought my head could handle. I was waiting for my head to explode. It was the worst MRI of my life. And I won't even talk about them trying to get the IV in first.
That afternoon and evening were the LOOOONGEST hours of my life. I left my MRI at 130, and tried to patiently wait for the call, I really did. I distracted myself afternoon and evening. I cleaned, ate, watched a movie and read stories with Grace.
Finally at 445 I gave in and paged him. I just couldn't take the suspense any longer. And I'm happy to report, for those that didn't know about this drama until now, that I am still cancer free! Moving onward and getting closer to the 3 year mark.
So with that being said, be well all.
Wednesday, October 31, 2012
Fuck You Cancer
So last night Grace had trouble sleeping, so we brought her into bed with us, and we were playing classical lullabies to help all of us fall back to sleep. Then came on the song I walked down the aisle to. It got me thinking. Scott and I have been together 11 years now, in those 11 years we have dealt with unemployment 4 times (now 5) and it was always me saying "things will be okay, everything will turn out all right" and so on. I really hate that cancer turned me into this awful depressed person yesterday over it. But I kept seeing me on the couch crying in pain cause my head hurt so bad and then throwing up across my living room like I did 3 years ago. I became so frightened by that, that I just felt like it was starting all over again and that the world was going to start shitting on me all over again. I started to feel like my world was going to turn upside down and spin completely out of control again. That there just might be a chance that I could loose everything I've ever wanted in life. Cancer has really fucked me up and I'm really missing the strong woman I once was. I really wanted to start screaming last night when I realized what I'd become and I just wanted to scream "FUCK YOU CANCER!!"
But really today, in the light of a new day, I know everything is going to be okay, it always is. I do have my faith in God that He knows what's best for my family. We've already started making our plans for what we will need to do to survive while he is unemployed, but he has a really good lead into another job right now, and it's with a company and people he's worked with before. So here's hoping unemployment won't be long, or at all. But I'm not going to put all our eggs in one basket, and I'm not going to hope for a lot all at once. It is what it is and we will be okay.
But seriously fuck you cancer, you fucked up my body but I won't let you ruin my soul or my faith. I won the fight for my life and I will win the fight for my soul and faith, simply by saying Fuck you cancer, you can't win! 😝
But really today, in the light of a new day, I know everything is going to be okay, it always is. I do have my faith in God that He knows what's best for my family. We've already started making our plans for what we will need to do to survive while he is unemployed, but he has a really good lead into another job right now, and it's with a company and people he's worked with before. So here's hoping unemployment won't be long, or at all. But I'm not going to put all our eggs in one basket, and I'm not going to hope for a lot all at once. It is what it is and we will be okay.
But seriously fuck you cancer, you fucked up my body but I won't let you ruin my soul or my faith. I won the fight for my life and I will win the fight for my soul and faith, simply by saying Fuck you cancer, you can't win! 😝
Wednesday, October 24, 2012
Boring grumbling, and medical updates
So I know I've cried and grumbled and mumbled about my hair in the past but please let me explain why. And if you stick through the boring hair crying you just might get to read about more than hair, I promise. What I can't promise is anything of great excitement. But I've never been able to do that. There is, however, a medical update.
Three years ago I had long hair. It was curly. I loved it. I could straighten it, I could leave it curly, I could wear it up or down. I could style it.
I KNEW my hair. I knew the shampoo and conditioner that worked best with my hair. I knew that if I brushed it JUST so it would curl right, and if I used the blow dryer and straightener I could get it super straight. I knew that if I didn't use conditioner I wouldn't be able to pull a brush through it, never mind do anything with it, and if I skipped a washing my hair would be super oily and gross. Three years ago my hair was easy. And super thick.
The cancer struck, and chemo took my hair away. During those eight months everyone kept telling me "Your hair is going to come back so curly" "Every ones hair comes in super curly" and other such comments. I would joke and tease that I would hope not TOO curly cause my hair was curly before. But I was looking forward to it.
Fast forward a year. Chemo's over, and my hair is coming in, finally. Its super short, looks like a men's buzz cut, but I was still excited. A year later my hair was longer and STRAIGHT, and thin. I was devastated. Now if we fast forward 2 years my hair now reaches my shoulders, and it has layers right now, cause a year ago my hairdresser told me it would give my hair more body. But now I am growing out all those layers. My hairdresser agrees with that choice. But I digress.
So my hair is straight and thin. I can't do anything with it cause its too short. I have NO CLUE what shampoo I should use. I've tried so many different types, at first they seem to leave my hair feeling nice and not oily looking at all. Then after awhile it starts leaving my hair oily feeling.
My point? I don't KNOW my hair anymore. Hell I don't know my own body anymore. But I don't cry about my hair because its too short, I cry because I don't know it. So when I say I want MY HAIR back, its not for the length, its for the familiarity.
I'm trying to talk less about my hair, I really am. And I know its the most selfish thing to cry over, because I am, after all, alive and doing well. However I fell like I'm in a strangers body. My mood swings are different, my hair is different, my whole body is different. I bruise so easily (right now I have a bruise almost 7 inches in length on my thigh and I have no clue how I got it. I used to know what soaps would break out my sensitive skin, and now I'm not sure. The soaps I once used break me out while others work okay.
I know, I know I'm boring you all with this crying shit. Boo hoo, I have no hair, whining. I get that, I do. But to me this is important because now I never know whats just a headache and what could be worse. I don't know if a sore spot on my body is just sore, or if it could be a tumor. I'm lost and I"m so tired of going to the doctors (as wonderful as they are) for what turns out to be nothing. I hate not knowing my body, it truly makes me want to cry.
These past 2 weeks I've been suffering from an immense pain near my surgical site. So intense that it literally felt like my scar was going to rip open. I would lay there crying because it hurt so bad. I would hold the spot, and then one day (about a week ago), I was rubbing the spot, and I hear *click*, and felt a *pop*. What the hell? My head is NOT supposed to click, or pop. Thinking it was a random fluke, I rubbed again, and sure enough *click* *pop*. So now I'm thinking it might be time to call a doctor, but which one? In the end I decided on my primary care doctor. Saw him last night, his words:
"Well I feel the popping, so you're not going crazy. I don't feel any masses, but I can't make any promises, but I definitely don't feel one. I'm not sure what it is. Now it does worry me a bit, but not enough to move up your MRI that's in February, but enough to make me glad you have an appointment with a specialist next week."
He gave me some vicodin to help me through the week. Hopefully this new specialist will know what is going on.
So, some pain is controlled and doing OK, then this new pain which is uncontrolled. So hopefully I'll have more answers next week.
Be well all...
Three years ago I had long hair. It was curly. I loved it. I could straighten it, I could leave it curly, I could wear it up or down. I could style it.
I KNEW my hair. I knew the shampoo and conditioner that worked best with my hair. I knew that if I brushed it JUST so it would curl right, and if I used the blow dryer and straightener I could get it super straight. I knew that if I didn't use conditioner I wouldn't be able to pull a brush through it, never mind do anything with it, and if I skipped a washing my hair would be super oily and gross. Three years ago my hair was easy. And super thick.
The cancer struck, and chemo took my hair away. During those eight months everyone kept telling me "Your hair is going to come back so curly" "Every ones hair comes in super curly" and other such comments. I would joke and tease that I would hope not TOO curly cause my hair was curly before. But I was looking forward to it.
Fast forward a year. Chemo's over, and my hair is coming in, finally. Its super short, looks like a men's buzz cut, but I was still excited. A year later my hair was longer and STRAIGHT, and thin. I was devastated. Now if we fast forward 2 years my hair now reaches my shoulders, and it has layers right now, cause a year ago my hairdresser told me it would give my hair more body. But now I am growing out all those layers. My hairdresser agrees with that choice. But I digress.
So my hair is straight and thin. I can't do anything with it cause its too short. I have NO CLUE what shampoo I should use. I've tried so many different types, at first they seem to leave my hair feeling nice and not oily looking at all. Then after awhile it starts leaving my hair oily feeling.
My point? I don't KNOW my hair anymore. Hell I don't know my own body anymore. But I don't cry about my hair because its too short, I cry because I don't know it. So when I say I want MY HAIR back, its not for the length, its for the familiarity.
I'm trying to talk less about my hair, I really am. And I know its the most selfish thing to cry over, because I am, after all, alive and doing well. However I fell like I'm in a strangers body. My mood swings are different, my hair is different, my whole body is different. I bruise so easily (right now I have a bruise almost 7 inches in length on my thigh and I have no clue how I got it. I used to know what soaps would break out my sensitive skin, and now I'm not sure. The soaps I once used break me out while others work okay.
I know, I know I'm boring you all with this crying shit. Boo hoo, I have no hair, whining. I get that, I do. But to me this is important because now I never know whats just a headache and what could be worse. I don't know if a sore spot on my body is just sore, or if it could be a tumor. I'm lost and I"m so tired of going to the doctors (as wonderful as they are) for what turns out to be nothing. I hate not knowing my body, it truly makes me want to cry.
These past 2 weeks I've been suffering from an immense pain near my surgical site. So intense that it literally felt like my scar was going to rip open. I would lay there crying because it hurt so bad. I would hold the spot, and then one day (about a week ago), I was rubbing the spot, and I hear *click*, and felt a *pop*. What the hell? My head is NOT supposed to click, or pop. Thinking it was a random fluke, I rubbed again, and sure enough *click* *pop*. So now I'm thinking it might be time to call a doctor, but which one? In the end I decided on my primary care doctor. Saw him last night, his words:
"Well I feel the popping, so you're not going crazy. I don't feel any masses, but I can't make any promises, but I definitely don't feel one. I'm not sure what it is. Now it does worry me a bit, but not enough to move up your MRI that's in February, but enough to make me glad you have an appointment with a specialist next week."
He gave me some vicodin to help me through the week. Hopefully this new specialist will know what is going on.
So, some pain is controlled and doing OK, then this new pain which is uncontrolled. So hopefully I'll have more answers next week.
Be well all...
Tuesday, September 4, 2012
I watched the stand up to cancer special last night. And while yes I teared up a little and yes I thought of Maggie too, the impact of it didn't hit me fully until today. I was giving my princess a bath and suddenly I thought of just how close I came to loosing everything I ever wanted in my life. It brought up all kinds of feelings I had completely forgotten about.
When I was in the hospital, just before my neurosurgery I never questioned whether I would die, I knew I would live through the surgery, I just had a baby so I had to live.
Even during chemo, when it first started, hell the first four months, I didn't question that I'd live.
But after 4 months of non stop treatments, and hospital visits I was exhausted. Seriously this was a typical month for me:
Day one I'd go in and spend two hours waiting for doctors and blood work, then I'd go to the treatment room and spend 4-5 hours there.
Day two I'd go back and spend 4 hours in the treatment room.
I'd spend days 3-7 at home, exhausted and sleeping a lot. Chemo made me extremely tired and weak.
Day 7 I'd start getting cold, and running a fever. I usually tried to hide it by taking Tylenol.
Day 8 it would be off to the ER for a visit.
I'd spend days 8-12 in the hospital receiving antibiotics and blood transfusions, and platelets. If I was lucky I'd get to go home on day 12.
I'd spend days 13-15 at home, feeling better than I did.
On day 16 I'd spend 2 hours waiting for doctors and bloodwork, then I'd spend 6 hours in treatment.
Days 17-20 I'd spend 6-7 hours in treatment.
Days 20-24 I'd spend exhausted and weak, very rarely getting off my couch or bed.
Day 25 I'd start with the fevers again.
On day 26 I'd go back to the hospital.
Days 26-30 would be spent in the hospital.
So you can see I'm not exaggerating when I say it was non stop. And let's not forget the 6 long weeks of radiation I went through about 3 to 4 months in.
I spent more time in hospitals, and treatment than I did at home. I started questioning whether it was worth it. Was being away from my baby all the time really worth it? I started wondering if the quality of my time with her would be better than the quantity of time I spent with her. I started begging my family and doctors to just stop the treatments, to just let me be done. I couldn't do it anymore. I cried all the time.
I was so weak I couldn't even carry her. I'd put her in her bassinet and hold on for dear life while I pushed us to the bathroom so we could take a bath. And it's not like I could even wash us up, Scott was there to help me, and make sure we didn't drown in our 2 inches of water.
In a short time I went from being completely independent to relying so fully on someone to feed me and bathe me that it was humiliating. I lost it all. So by the 4th month I'd had enough. I wanted to stop all treatment, I wanted my life back, I didn't want to rely on anyone else anymore. I started planning letters I'd write to Grace because I fully believed I was going to die. If pthe cancer didn't kill me, the treatment would.
By that time it was Christmas and everything felt so hopeless. I was too weak to decorate my house for the holiday, and I sat on my mothers couch directing people where to put things on my mothers tree. I never threw up from treatment but boy did it make me feel so weak, and I was always so tired.
At one point I cried to the Heavens wanting to know how God could have forgotten me and why He'd allow me to go through such an awful illness, especially after just having a baby. Did God really give me this wonderful miracle just to take me away from her? I couldn't figure out what I did wrong to deserve such a punishment. Was I really that awful a person that I deserved to go through this? And why did I get cancer?
I held Grace all the time and when I slept she was next to me. I missed her so much when I was away from her that I just couldn't let her go those few precious moments I was with her.
I stopped questioning why a long time ago, but I still feel forgotten sometimes.
Be well
When I was in the hospital, just before my neurosurgery I never questioned whether I would die, I knew I would live through the surgery, I just had a baby so I had to live.
Even during chemo, when it first started, hell the first four months, I didn't question that I'd live.
But after 4 months of non stop treatments, and hospital visits I was exhausted. Seriously this was a typical month for me:
Day one I'd go in and spend two hours waiting for doctors and blood work, then I'd go to the treatment room and spend 4-5 hours there.
Day two I'd go back and spend 4 hours in the treatment room.
I'd spend days 3-7 at home, exhausted and sleeping a lot. Chemo made me extremely tired and weak.
Day 7 I'd start getting cold, and running a fever. I usually tried to hide it by taking Tylenol.
Day 8 it would be off to the ER for a visit.
I'd spend days 8-12 in the hospital receiving antibiotics and blood transfusions, and platelets. If I was lucky I'd get to go home on day 12.
I'd spend days 13-15 at home, feeling better than I did.
On day 16 I'd spend 2 hours waiting for doctors and bloodwork, then I'd spend 6 hours in treatment.
Days 17-20 I'd spend 6-7 hours in treatment.
Days 20-24 I'd spend exhausted and weak, very rarely getting off my couch or bed.
Day 25 I'd start with the fevers again.
On day 26 I'd go back to the hospital.
Days 26-30 would be spent in the hospital.
So you can see I'm not exaggerating when I say it was non stop. And let's not forget the 6 long weeks of radiation I went through about 3 to 4 months in.
I spent more time in hospitals, and treatment than I did at home. I started questioning whether it was worth it. Was being away from my baby all the time really worth it? I started wondering if the quality of my time with her would be better than the quantity of time I spent with her. I started begging my family and doctors to just stop the treatments, to just let me be done. I couldn't do it anymore. I cried all the time.
I was so weak I couldn't even carry her. I'd put her in her bassinet and hold on for dear life while I pushed us to the bathroom so we could take a bath. And it's not like I could even wash us up, Scott was there to help me, and make sure we didn't drown in our 2 inches of water.
In a short time I went from being completely independent to relying so fully on someone to feed me and bathe me that it was humiliating. I lost it all. So by the 4th month I'd had enough. I wanted to stop all treatment, I wanted my life back, I didn't want to rely on anyone else anymore. I started planning letters I'd write to Grace because I fully believed I was going to die. If pthe cancer didn't kill me, the treatment would.
By that time it was Christmas and everything felt so hopeless. I was too weak to decorate my house for the holiday, and I sat on my mothers couch directing people where to put things on my mothers tree. I never threw up from treatment but boy did it make me feel so weak, and I was always so tired.
At one point I cried to the Heavens wanting to know how God could have forgotten me and why He'd allow me to go through such an awful illness, especially after just having a baby. Did God really give me this wonderful miracle just to take me away from her? I couldn't figure out what I did wrong to deserve such a punishment. Was I really that awful a person that I deserved to go through this? And why did I get cancer?
I held Grace all the time and when I slept she was next to me. I missed her so much when I was away from her that I just couldn't let her go those few precious moments I was with her.
I stopped questioning why a long time ago, but I still feel forgotten sometimes.
Be well
Thursday, August 2, 2012
I know it's been a long while since my last post but I've been busy. I was cleaning and shopping for someone's birthday, and then we had her party. It was a great day. I can't believe my baby is three already.
After her birthday we potty trained her. And man oh man was that easy! I kept telling her that after she turned three she had to stop wearing diapers cause she'd no longer be a baby, she'd be a big girl and big girls wear undies. The first couple of days I questioned whether or not she was ready, but the third day she had it down like no ones business. She's had no accidents (other than her nightgown falling into the toilet lol) since and she even runs and goes on her own. She calls for us when she's done to come wipe her and that's that. We still remind her to go every so often but man it has been easy! I'm so proud of her. She really is ready for preschool now! Not that they required her to be trained but it does make it easier on everyone.
Took her in for her 3 year check up and she is perfect, with the development of a 3.5-4 year old! She weighs 31 pounds and stands at a whopping 38 inches tall! She's so big!
My scans come up at the end of the month and surprisingly I'm not freaking out like I used to. I'm looking at this as a "what happens, happens" type of deal. I really have no control over whether or not the cancer comes back, so why not sit back and enjoy my time (when not sitting around waiting for one doctor or another lol).
Shortly after my scans we head out to the white mountains and enjoy a week long vacation up there. We plan on hitting storyland and most likely hobo junction. No real other plans except to sit pool side and relax, let's not forget swimming too!
So that's that. My baby is now a big girl and I'm still cancer free. I'm sure I'll update again.
Be well all
After her birthday we potty trained her. And man oh man was that easy! I kept telling her that after she turned three she had to stop wearing diapers cause she'd no longer be a baby, she'd be a big girl and big girls wear undies. The first couple of days I questioned whether or not she was ready, but the third day she had it down like no ones business. She's had no accidents (other than her nightgown falling into the toilet lol) since and she even runs and goes on her own. She calls for us when she's done to come wipe her and that's that. We still remind her to go every so often but man it has been easy! I'm so proud of her. She really is ready for preschool now! Not that they required her to be trained but it does make it easier on everyone.
Took her in for her 3 year check up and she is perfect, with the development of a 3.5-4 year old! She weighs 31 pounds and stands at a whopping 38 inches tall! She's so big!
My scans come up at the end of the month and surprisingly I'm not freaking out like I used to. I'm looking at this as a "what happens, happens" type of deal. I really have no control over whether or not the cancer comes back, so why not sit back and enjoy my time (when not sitting around waiting for one doctor or another lol).
Shortly after my scans we head out to the white mountains and enjoy a week long vacation up there. We plan on hitting storyland and most likely hobo junction. No real other plans except to sit pool side and relax, let's not forget swimming too!
So that's that. My baby is now a big girl and I'm still cancer free. I'm sure I'll update again.
Be well all
Monday, June 18, 2012
The End... post 8
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.
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.
Friday, June 15, 2012
Things get better... post 7
My family had a fundraiser to help raise money to help pay our bills. Friends and family gathered that night for dancing, and drinking, and buying lots of cool stuff. Well, bidding on lots of cool stuff. So many people were there, and I was touched by the generosity of so many people that night.
We, also, had awesome friends, Brian and Jill, give us a car, an old Lincoln. Their generosity was just absolutely shocking. I had never had friends as generous as these two, and I'm still in shock that they could think so highly of us that they would give us a car. I will forever be grateful to them for all they did for us. This allowed us time to get money to get a newer car. For an old car it drove fairly well. It took us from point A to point B to point C and then back again. They are the perfect example of truly selfless people. They gave us a CAR out of the goodness of their hearts, asking absolutely nothing in return.
My holidays were tainted by hospital stays that threatened to keep me from being home for those special days. Scott was still out of work and I was heart broken to think that my baby would have nothing under the tree on her first Christmas. And yes I know she was too young to even know what was going on, but I still would have liked to have something for her. Thanks to the kindness of strangers I had more than I could have dreamed of under the tree for her. I saw over and over again just how much the generosity of strangers would change my world and definitely my perspective on the world. Strangers, friends and family would prove over and over again just what a good world we did live in.
Scott and I received a card from the people at the company he was just let go from. Inside was a beautiful letter plus enough money to help us pay rent one month. Once again I was blinded and shocked by the generosity of people. These people all chipped in to help us when times were tough. These people didn't have to give us a second thought nevermind send us a card OR gather money up to send us. And yet they did, they truly cared for Scott, he wasn't just another employee to them.
By January I was tired, just plain exhausted, physically and emotionally. I could barely walk, or eat, or even stay awake. Eating had been a struggle all along. Everything tasted awful! At first I would be so hungry I'd get frustrated and cry as food after food tasted awful and made me want to throw up. All I wanted was to eat something ANYTHING. I learned garlic dipping sauce with pizza allowed me to be able to eat a slice. Strong flavors allowed me to eat a few bites, but by the end of chemo I was eating very little, maybe a couple nibbles on something a day. I couldn't stand food and all it did was make me cry.
In February I was begging for it all to be over. I just couldn't do it anymore. It was all too much to handle. I was ready to give up and let the cancer win. I started questioning my faith in God, something I hadn't done most of the time. I just couldn't understand how God could have forgotten me, or hated me so much that He'd leave me. That He'd let me get so sick, and have to fight so hard just to keep on living. And really, if God was this awful did I want to keep living? Did I want to live in a world where God had so obviously forgotten me?
I was having a hard time with this hand I was dealt. After everything I had already been through and put myself through in life, did I really deserve to have cancer too? What wrong did I commit, what evil act did I do, to deserve to be punished as badly as I was. What kind of God would allow anyone to go through this? It would take me awhile, but I'd find my faith again, and it would strengthen too.
Come the end of March it was over! I went in for a regular visit with doctors and then treatment. When Dr. Crystal walked in he looked at me and said "I was talking to Dr. Morgan, and we've decided something about your treatment. Now, you're not going to like this but we've decided that you've had your last treatment. Thats it, you're done." It took a while to sink in but it was over, it was finally all over. I had had my last treatment! Now on to scans to make sure it was all gone and then life could resume. Or so I thought. Shortly after treatment ended Scott was offered a very nice job, working from home for a game company. It was an answer to so many prayers!
We, also, had awesome friends, Brian and Jill, give us a car, an old Lincoln. Their generosity was just absolutely shocking. I had never had friends as generous as these two, and I'm still in shock that they could think so highly of us that they would give us a car. I will forever be grateful to them for all they did for us. This allowed us time to get money to get a newer car. For an old car it drove fairly well. It took us from point A to point B to point C and then back again. They are the perfect example of truly selfless people. They gave us a CAR out of the goodness of their hearts, asking absolutely nothing in return.
My holidays were tainted by hospital stays that threatened to keep me from being home for those special days. Scott was still out of work and I was heart broken to think that my baby would have nothing under the tree on her first Christmas. And yes I know she was too young to even know what was going on, but I still would have liked to have something for her. Thanks to the kindness of strangers I had more than I could have dreamed of under the tree for her. I saw over and over again just how much the generosity of strangers would change my world and definitely my perspective on the world. Strangers, friends and family would prove over and over again just what a good world we did live in.
Scott and I received a card from the people at the company he was just let go from. Inside was a beautiful letter plus enough money to help us pay rent one month. Once again I was blinded and shocked by the generosity of people. These people all chipped in to help us when times were tough. These people didn't have to give us a second thought nevermind send us a card OR gather money up to send us. And yet they did, they truly cared for Scott, he wasn't just another employee to them.
By January I was tired, just plain exhausted, physically and emotionally. I could barely walk, or eat, or even stay awake. Eating had been a struggle all along. Everything tasted awful! At first I would be so hungry I'd get frustrated and cry as food after food tasted awful and made me want to throw up. All I wanted was to eat something ANYTHING. I learned garlic dipping sauce with pizza allowed me to be able to eat a slice. Strong flavors allowed me to eat a few bites, but by the end of chemo I was eating very little, maybe a couple nibbles on something a day. I couldn't stand food and all it did was make me cry.
In February I was begging for it all to be over. I just couldn't do it anymore. It was all too much to handle. I was ready to give up and let the cancer win. I started questioning my faith in God, something I hadn't done most of the time. I just couldn't understand how God could have forgotten me, or hated me so much that He'd leave me. That He'd let me get so sick, and have to fight so hard just to keep on living. And really, if God was this awful did I want to keep living? Did I want to live in a world where God had so obviously forgotten me?
I was having a hard time with this hand I was dealt. After everything I had already been through and put myself through in life, did I really deserve to have cancer too? What wrong did I commit, what evil act did I do, to deserve to be punished as badly as I was. What kind of God would allow anyone to go through this? It would take me awhile, but I'd find my faith again, and it would strengthen too.
Come the end of March it was over! I went in for a regular visit with doctors and then treatment. When Dr. Crystal walked in he looked at me and said "I was talking to Dr. Morgan, and we've decided something about your treatment. Now, you're not going to like this but we've decided that you've had your last treatment. Thats it, you're done." It took a while to sink in but it was over, it was finally all over. I had had my last treatment! Now on to scans to make sure it was all gone and then life could resume. Or so I thought. Shortly after treatment ended Scott was offered a very nice job, working from home for a game company. It was an answer to so many prayers!
Wednesday, June 13, 2012
Telling the news... Post 6
On the way home we talked, and called all my siblings together to tell them the news. It was the most heartbreaking night of my life. We stopped to buy pizza cause we were starving. I know, you're probably thinking, how could I eat at a time like this, right? Well imagine being in a hospital for 3 weeks, where you couldn't eat, and you would know how starving I was. I was barely allowed water while in there. So we stopped and brought home pizza. While we waited in the parking lot, I told my mom I was going to name my tumor, something weak, so I could imagine kicking his ass right out of my life. I don't know where the name came from but, I named him Melvin.
So now we go home And there's my brothers and sister, and my sister-in-laws and you could see they knew. It was in their eyes, but they were hoping for better. I told them the news, I had cancer, and it was rare. But my chances were good. I hated telling my brother Gregg. He was the one person I was so afraid to tell I had cancer. I didn't want to loose my best friend, and just knowing I could miss out on his wedding, on his children was enough to break my heart. Of course we all cried a bit but I told them that I had no intention of giving up, that this is one fight I would win.
The wait seemed to take forever, when in reality I think it only took a week. But to me, it went on for an eternity. But after the scans were done and the results were in, I'd go back to DFCI and see Dr. Morgan and Dr. Crystal once again.They told me I was lucky because we caught it early, I had no other signs of disease anywhere else in my body. I was told I'd need 6-12 months of chemo, plus 6 weeks of radiation. My hopes of a simple surgery were long gone, at this point. Now I was facing a long struggle, the fight for my own life. So I put on my brave face and set out to win the fight, and I was prepared to fight dirty if I had to. But I knew I'd win, there was no way I was going to give up a future with my daughter and husband.
So I had named my tumor Melvin, a nerd name. I pictured him small, weak and easy prey. I would win this fight. I even chose "Faith of the Heart" by Rod Stewart for my theme song. I was already envisioning me at my 5 year cancer free mark, and it being a long road from where I was to there, just like the opening line in the song.
So now I had a new hope, one for 6 easy, quick months of chemo. But after my first treatment I ended up in the hospital. I'd soon learn that for every day I spent at home, I'd spend 2-3 in the hospital or in treatments. It was suddenly clear that I was going to miss a lot of time with my new family. I tried to plan a special event every month that I was going through chemo, on the off chance I didn't make it through. I wanted my daughter to be able to look at pictures and to know how much I loved her and adored her. I wanted her to know that I did things with her and wanted to make my time with her special. We did apple picking, pumpkin picking, Santa visit, but by January I was too weak to do much. I was just feeling too defeated.
In December, during radiation, our car broke down, on the second floor of the DFCI parking garage. Then a couple weeks later my moms car broke down, on the second floor of the DFCI parking garage. BOTH cars had to be towed out of there. Our car was beyond repair, and it happened at the worst possible time. We had no money, still no job and I still had another 3-4 months of chemo ahead of me. I remember sitting in my mothers car waiting for the tow truck and I kept crying. I felt like the world was shitting on me over and over again. I was falling into a black hole and I just wanted it to swallow me up. I just wanted to climb under the covers and never come out again. I just wanted to give up, it was all becoming too much for me. I was tired of being strong, and I was so sad that I was bald (although I did look awesome in the scarves), and I was tired of treatments and hospitals. I just didn't want to fight anymore. I just didn't have it in me anymore to keep fighting. At this point I just wanted to die, I really did. Seriously if life was just going to keep shitting on me, why would I want to live? Why SHOULD I live?
And it's not that the treatments made me terribly sick or anything. The only things I felt from the treatments were extreme exhaustion and I went bald. And my muscles became weak. It took my breath away to walk from my bed to the bathroom. My legs would sometimes buckle and standing for more than 5 minutes was a challenge.
But my hair falling out was the hardest for me. I tried to remain brave and strong when we shaved our heads. And I do me "we". My brothers and nephew were there to support me and shave their heads too. How I love them for that, how much it meant to me to have them there with me when I was dreading it so very much. They made the night so much more bearable for me. They even had me laughing as I watched my beautiful curls fall to the floor around me. I didn't see a choice other than to watch it slowly fall out from the chemo, this was the better choice.
Somewhere I found the strength to get up the day after the car and black hole incident and make the journey to Boston for more radiation. I relied a lot on my family then for rides, strength and for faith. My favorite times were when Gregg was with me. When he would go with me to chemo it was almost like old times, except now we were sitting in a treatment room and I had poison going into me. But he found ways to make me laugh, and the nurses loved him. They even started asking about him, and wondering when he'd be bringing me in again. Gregg would come to my rescue more and more. He took me in to Rhode Island to see RENT, it was a night I'll never forget. I was so happy to see it on stage again that I didn't care how weak I was. I had already miss seeing Jeff Dunham live and Kenny Rogers, there was no way I'd miss out on RENT too. I was definitely spoilked by family and friends alike.
So now we go home And there's my brothers and sister, and my sister-in-laws and you could see they knew. It was in their eyes, but they were hoping for better. I told them the news, I had cancer, and it was rare. But my chances were good. I hated telling my brother Gregg. He was the one person I was so afraid to tell I had cancer. I didn't want to loose my best friend, and just knowing I could miss out on his wedding, on his children was enough to break my heart. Of course we all cried a bit but I told them that I had no intention of giving up, that this is one fight I would win.
The wait seemed to take forever, when in reality I think it only took a week. But to me, it went on for an eternity. But after the scans were done and the results were in, I'd go back to DFCI and see Dr. Morgan and Dr. Crystal once again.They told me I was lucky because we caught it early, I had no other signs of disease anywhere else in my body. I was told I'd need 6-12 months of chemo, plus 6 weeks of radiation. My hopes of a simple surgery were long gone, at this point. Now I was facing a long struggle, the fight for my own life. So I put on my brave face and set out to win the fight, and I was prepared to fight dirty if I had to. But I knew I'd win, there was no way I was going to give up a future with my daughter and husband.
So I had named my tumor Melvin, a nerd name. I pictured him small, weak and easy prey. I would win this fight. I even chose "Faith of the Heart" by Rod Stewart for my theme song. I was already envisioning me at my 5 year cancer free mark, and it being a long road from where I was to there, just like the opening line in the song.
So now I had a new hope, one for 6 easy, quick months of chemo. But after my first treatment I ended up in the hospital. I'd soon learn that for every day I spent at home, I'd spend 2-3 in the hospital or in treatments. It was suddenly clear that I was going to miss a lot of time with my new family. I tried to plan a special event every month that I was going through chemo, on the off chance I didn't make it through. I wanted my daughter to be able to look at pictures and to know how much I loved her and adored her. I wanted her to know that I did things with her and wanted to make my time with her special. We did apple picking, pumpkin picking, Santa visit, but by January I was too weak to do much. I was just feeling too defeated.
In December, during radiation, our car broke down, on the second floor of the DFCI parking garage. Then a couple weeks later my moms car broke down, on the second floor of the DFCI parking garage. BOTH cars had to be towed out of there. Our car was beyond repair, and it happened at the worst possible time. We had no money, still no job and I still had another 3-4 months of chemo ahead of me. I remember sitting in my mothers car waiting for the tow truck and I kept crying. I felt like the world was shitting on me over and over again. I was falling into a black hole and I just wanted it to swallow me up. I just wanted to climb under the covers and never come out again. I just wanted to give up, it was all becoming too much for me. I was tired of being strong, and I was so sad that I was bald (although I did look awesome in the scarves), and I was tired of treatments and hospitals. I just didn't want to fight anymore. I just didn't have it in me anymore to keep fighting. At this point I just wanted to die, I really did. Seriously if life was just going to keep shitting on me, why would I want to live? Why SHOULD I live?
And it's not that the treatments made me terribly sick or anything. The only things I felt from the treatments were extreme exhaustion and I went bald. And my muscles became weak. It took my breath away to walk from my bed to the bathroom. My legs would sometimes buckle and standing for more than 5 minutes was a challenge.
But my hair falling out was the hardest for me. I tried to remain brave and strong when we shaved our heads. And I do me "we". My brothers and nephew were there to support me and shave their heads too. How I love them for that, how much it meant to me to have them there with me when I was dreading it so very much. They made the night so much more bearable for me. They even had me laughing as I watched my beautiful curls fall to the floor around me. I didn't see a choice other than to watch it slowly fall out from the chemo, this was the better choice.
Somewhere I found the strength to get up the day after the car and black hole incident and make the journey to Boston for more radiation. I relied a lot on my family then for rides, strength and for faith. My favorite times were when Gregg was with me. When he would go with me to chemo it was almost like old times, except now we were sitting in a treatment room and I had poison going into me. But he found ways to make me laugh, and the nurses loved him. They even started asking about him, and wondering when he'd be bringing me in again. Gregg would come to my rescue more and more. He took me in to Rhode Island to see RENT, it was a night I'll never forget. I was so happy to see it on stage again that I didn't care how weak I was. I had already miss seeing Jeff Dunham live and Kenny Rogers, there was no way I'd miss out on RENT too. I was definitely spoilked by family and friends alike.
Tuesday, June 12, 2012
How the earth stood still...part 5
In June Scott was laid off, this was the floor collapsing in my life. Now we were both unemployed and we had a baby on the way. His unemployment was barely enough for us to pay rent, nevermind utilities and food. We were at a loss how to make this all work on our own. We needed some help. So we went and applied for WIC, and gas assistance, which also gave us a discount on electric. The only thing we didn't have a chance to do yet was apply for food stamps.
Thats because the world would stop moving in July. I laid down on the couch to nap, and awoke to awful pain radiating through my face and head, and the numb feeling still being there, in parts of my face. I couldn't stop crying, it just hurt SO bad. I called for Scott who came out to me. I cried and cried about the pain. I was so scared. Then in a flash I felt so sick. I could barely make it off the couch when I started throwing up across my living room. Like legit, across my living room. It would take days to get the smell out. Scott grabbed a bowl and called my doctor. Back to the ER we went where they gave me meds to stop the vomiting, and once I could hold down 2 graham crackers and a ginger ale, I was sent home.The next day the vomiting returned and the pain still felt awful. I waited overnight to see if it would stop on its own. When it didn't we returned to the ER. I was admitted to labor and delivery so they could monitor the baby, and run tests on me to find out what was wrong. They ran test after test, yet everything came back normal.
After awhile it was decided I had toxemia and had to have the baby. So I was induced. It was a slow process and everything was done to try to speed it up, but my body made no progress. Sometime during all this my doctor asked how my face was feeling. I told him it was still numb, and that my vision was doubled and I couldn't hear out of my right ear. He called in a neurologist. After a brief talk, and neuro exam, he went and looked at my CT scan from before. Now here's a twist, remember that ER visit where I was treated horribly and told I was fine? Yea that CT scan actually DID show something. But whether it was a tumor or clot, he didn't know. All he knew was I couldn't give birth naturally. So I was rushed off for an emergency c-section where I had a beautiful 6lbs 8oz little girl. The little girl I had dreamed of for so long. I was in heaven!
Until the next morning when the earth fell off its axis. The took me for an MRI early in the morning. An hour or so later the nurses were in to hang some medicine on the IV pole, and told me I couldn't nurse. They wouldn't tell me why, just that I had to wait for the doctor. I had been around them enough to know something was seriously wrong. My doctor, and the neurologist, came in shortly after and told me the news. We had spent the night hoping for a clot, a simple surgery, but it was bad. Just how bad we wouldn't know for awhile. I had a 4cm tumor growing behind my right ear near my brain stem. It was swelling and bleeding, causing all kinds of pressure on my brain. I was told that the growth patterns showed it was benign and that a surgery to remove it, and maybe some radiation to completely get rid of it would be all I'd need.
They transferred me to Brigham and Women's hospital where I met my neurosurgeon, and his team. He put us at ease, answered our questions and even made it so Grace could come be with us in the hospital. He preformed more MRI's and other tests and set a surgery date. He, too, told us the growth patterns showed the tumor was benign. It's strange but looking back I realize that we never once asked the question "what are the chances I'll die?". I never once questioned that I'd live. There was no chance in hell I'd give up the chance to live my dream of being a mother.
After the surgery I awoke in the recovery room. I hurt all over. I imagine if I had been hit by a truck it would have hurt less. I could barely talk and forget swallowing! Which made taking the pain pills impossible. It would be days before I could swallow without choking. The surgeon refused to say whether or not the tumor was benign. I knew right then that I had cancer. I refused to say it and I certainly kept trying to convince myself that I was fine, but his change in words told me everything I needed to know.
When I finally returned home, after 3 weeks in hospitals, I was weak. The toll 2 major surgeries took on my body was finally evident. I was weak, and I was so exhausted all the time. I would sleep for hours at a time, I barely had the energy to feed and change Grace when she needed it, a lot of the time Scott had to do it for me. I felt like the worst mother ever. My baby needed me and there was nothing I could do. I just didn't have the strength in me to stay awake most of the time. When I wasn't asleep I would hold my baby and cry because I was afraid I was going to die. How long I waited for what was finally mine, and now I faced loosing it all.
After just a week at home we went back to Boston to get the stitches out and hear the pathology reports. I tried to remain calm but inside I was dying. We sat in that little room, Scott, Grace, my mother and I and we waited. When he finally came in his face said it all. The reports were back, and they weren't good. I had a rare form of cancer called ewings sarcoma, a bone cancer. I was sent to the Dana Farber Cancer Institute, where I met a doctor who better explained it. It's a childhood cancer, very rare to show up in adulthood. It's a bone cancer, usually starts in the hips or upper legs. I'd have more scans over the next few days than I can even remember. How much those words scared me. Now I waited for more scans and more doctors to tell me how far this had progressed.
Thats because the world would stop moving in July. I laid down on the couch to nap, and awoke to awful pain radiating through my face and head, and the numb feeling still being there, in parts of my face. I couldn't stop crying, it just hurt SO bad. I called for Scott who came out to me. I cried and cried about the pain. I was so scared. Then in a flash I felt so sick. I could barely make it off the couch when I started throwing up across my living room. Like legit, across my living room. It would take days to get the smell out. Scott grabbed a bowl and called my doctor. Back to the ER we went where they gave me meds to stop the vomiting, and once I could hold down 2 graham crackers and a ginger ale, I was sent home.The next day the vomiting returned and the pain still felt awful. I waited overnight to see if it would stop on its own. When it didn't we returned to the ER. I was admitted to labor and delivery so they could monitor the baby, and run tests on me to find out what was wrong. They ran test after test, yet everything came back normal.
After awhile it was decided I had toxemia and had to have the baby. So I was induced. It was a slow process and everything was done to try to speed it up, but my body made no progress. Sometime during all this my doctor asked how my face was feeling. I told him it was still numb, and that my vision was doubled and I couldn't hear out of my right ear. He called in a neurologist. After a brief talk, and neuro exam, he went and looked at my CT scan from before. Now here's a twist, remember that ER visit where I was treated horribly and told I was fine? Yea that CT scan actually DID show something. But whether it was a tumor or clot, he didn't know. All he knew was I couldn't give birth naturally. So I was rushed off for an emergency c-section where I had a beautiful 6lbs 8oz little girl. The little girl I had dreamed of for so long. I was in heaven!
Until the next morning when the earth fell off its axis. The took me for an MRI early in the morning. An hour or so later the nurses were in to hang some medicine on the IV pole, and told me I couldn't nurse. They wouldn't tell me why, just that I had to wait for the doctor. I had been around them enough to know something was seriously wrong. My doctor, and the neurologist, came in shortly after and told me the news. We had spent the night hoping for a clot, a simple surgery, but it was bad. Just how bad we wouldn't know for awhile. I had a 4cm tumor growing behind my right ear near my brain stem. It was swelling and bleeding, causing all kinds of pressure on my brain. I was told that the growth patterns showed it was benign and that a surgery to remove it, and maybe some radiation to completely get rid of it would be all I'd need.
They transferred me to Brigham and Women's hospital where I met my neurosurgeon, and his team. He put us at ease, answered our questions and even made it so Grace could come be with us in the hospital. He preformed more MRI's and other tests and set a surgery date. He, too, told us the growth patterns showed the tumor was benign. It's strange but looking back I realize that we never once asked the question "what are the chances I'll die?". I never once questioned that I'd live. There was no chance in hell I'd give up the chance to live my dream of being a mother.
After the surgery I awoke in the recovery room. I hurt all over. I imagine if I had been hit by a truck it would have hurt less. I could barely talk and forget swallowing! Which made taking the pain pills impossible. It would be days before I could swallow without choking. The surgeon refused to say whether or not the tumor was benign. I knew right then that I had cancer. I refused to say it and I certainly kept trying to convince myself that I was fine, but his change in words told me everything I needed to know.
When I finally returned home, after 3 weeks in hospitals, I was weak. The toll 2 major surgeries took on my body was finally evident. I was weak, and I was so exhausted all the time. I would sleep for hours at a time, I barely had the energy to feed and change Grace when she needed it, a lot of the time Scott had to do it for me. I felt like the worst mother ever. My baby needed me and there was nothing I could do. I just didn't have the strength in me to stay awake most of the time. When I wasn't asleep I would hold my baby and cry because I was afraid I was going to die. How long I waited for what was finally mine, and now I faced loosing it all.
After just a week at home we went back to Boston to get the stitches out and hear the pathology reports. I tried to remain calm but inside I was dying. We sat in that little room, Scott, Grace, my mother and I and we waited. When he finally came in his face said it all. The reports were back, and they weren't good. I had a rare form of cancer called ewings sarcoma, a bone cancer. I was sent to the Dana Farber Cancer Institute, where I met a doctor who better explained it. It's a childhood cancer, very rare to show up in adulthood. It's a bone cancer, usually starts in the hips or upper legs. I'd have more scans over the next few days than I can even remember. How much those words scared me. Now I waited for more scans and more doctors to tell me how far this had progressed.
There's still more... part 4
Against all odds Scott and I survived my bullshit and drama and got married in 2007. It was absolutely FREEZING that day. And it almost was just an over priced party, instead of a wedding. I was supposed to call the justice of the peace when I got to the hotel that afternoon but we were running late and I completely forgot! I only remembered when, who should walk in? The justice of the peace! I almost passed out with shock! Somehow this man knew to stop by and see if we still needed him. So thankfully we were still married on the day we wanted. It was an amazing night, and before I knew it, it was over.
In 2008 I had a doctor tell me I'd never get pregnant, not on my own and most likely not even with medical help. I was beyond devastated to think that I'd never have that little girl I had always dreamed of. I barely ate or slept for the next 6 months. Scott and I weren't exactly trying, but we weren't preventing either, but it was still a surprise to learn in November 2008 that I was pregnant! I was beyond thrilled! This was what I wanted my whole life! I wanted the belly, and yes, even morning sickness and stretch marks. But color me surprised when none of that happened. By the time I gave birth I could still wear my regular clothes. I wore maternity clothes because I wanted to, not because I had to. I didn't even get any morning sickness.
Early on in the pregnancy I had some spotting, and I went to the hospital to make sure the baby was okay. It was just before Christmas and I was crying so hard all the way in. I was shaking while they did the ultrasound, afraid they'd find no heartbeat. I was so happy to see that little heart beating. Against all odds I got pregnant, and on my own too, she was a miracle baby.
In May of 2009 my job was ending. I knew it, we were prepared for it. In early June I saw my doctor and my only complaint was my face was numb, so naturally he sent me off to the ER to be checked out. At the ER I was treated like I was just some crazy, hormonal pregnant lady. They left me sitting in a room for a couple hours before I was even seen by the doctor. The nurses brushed me off everytime I'd ask about it. When they finally did see me they ordered a CT scan, then came in to tell me these exact words "There is absolutely nothing wrong with you. Go home and get some rest. If it, for some real reason, gets worse call a neurologist.". They were so condescending to me. I left, confused, but satisfied there was nothing wrong. I was also shocked and hurt that I was treated the way I was. I went about life as normal as possible, not realizing just how the floor can collapse and the world could stop moving all at once.
In 2008 I had a doctor tell me I'd never get pregnant, not on my own and most likely not even with medical help. I was beyond devastated to think that I'd never have that little girl I had always dreamed of. I barely ate or slept for the next 6 months. Scott and I weren't exactly trying, but we weren't preventing either, but it was still a surprise to learn in November 2008 that I was pregnant! I was beyond thrilled! This was what I wanted my whole life! I wanted the belly, and yes, even morning sickness and stretch marks. But color me surprised when none of that happened. By the time I gave birth I could still wear my regular clothes. I wore maternity clothes because I wanted to, not because I had to. I didn't even get any morning sickness.
Early on in the pregnancy I had some spotting, and I went to the hospital to make sure the baby was okay. It was just before Christmas and I was crying so hard all the way in. I was shaking while they did the ultrasound, afraid they'd find no heartbeat. I was so happy to see that little heart beating. Against all odds I got pregnant, and on my own too, she was a miracle baby.
In May of 2009 my job was ending. I knew it, we were prepared for it. In early June I saw my doctor and my only complaint was my face was numb, so naturally he sent me off to the ER to be checked out. At the ER I was treated like I was just some crazy, hormonal pregnant lady. They left me sitting in a room for a couple hours before I was even seen by the doctor. The nurses brushed me off everytime I'd ask about it. When they finally did see me they ordered a CT scan, then came in to tell me these exact words "There is absolutely nothing wrong with you. Go home and get some rest. If it, for some real reason, gets worse call a neurologist.". They were so condescending to me. I left, confused, but satisfied there was nothing wrong. I was also shocked and hurt that I was treated the way I was. I went about life as normal as possible, not realizing just how the floor can collapse and the world could stop moving all at once.
Monday, June 11, 2012
It gets better... part 3
At 18 I met Scott at bickfords. At the time it was open 24hours and my girlfriend and I used to go there every night after work, or just about every night. And one night Scott walks in with a friend and was seated at a table near us. I vowed to have his number before we left. It was a night of smiles, flirting and laughter. And my girlfriend kept me true to my word, sort of. By 1am she was ready to go home but I wasn't ready to call it a night. I had jokingly written my number on a sugar packet earlier in the evening, and kept saying I was just going to leave it on the table and see who called, she decided to throw it at him. We were still there at 2am, talking in the parking lot.I just didn't want the night to end. I had never felt like this before and it was amazing. I just couldn't get enough of him, and wanted to keep him there in case I never heard from him again. But I did get his number, and because I was so excited, I called him that night. We made plans to go out in a few nights.
Well I couldn't wait, so the following night when I was headed into Bickfords again, I called him to see if he wanted to meet me there. And he did. I once again spent the evening chatting with him, but I had to be more considerate of the friend I was with this night, because she was pregnant. So at a decent hour, after eating our meals and paying the check, we said goodbye and went on our seperate ways. You think at that point I would have waited for the next night when I would see him for our date, but I didn't. I called him again and meet him at Bickfords once again.
The following night we had our "first" date, even though we'd already been out twice by now. We saw The Santa Claus 2 and went to dinner. He took me into Boston to go to a place at the top of the Pru, but they had just closed for the evening. So guess where we ended up? Bickfords! I chose to end the evening there, in fact I had chosen everything that night. And I seriously don't know why I thought going to a movie was a good idea for a first date, so I was glad that we had had dinner for the past 3 nights. I really got to know him in those first few days.
Still, I figured Scott would be like every other guy, couple of dates and I'd be bored. But it was shocking to me when I didn't call it quits by the 3rd date. Imagine my surprise to realize I'd fallen in love! We spent almost every night together, whether sitting at Bickfords, going to movies or just hanging out at his house. I was happy just to be with him.
The spring after I met Scott I was restless. I wanted to get a different/better job, so I started interviewing for a nanny job. I was orginally looking for something local, nearby. But I saw a live in ad in New Canaan, CT and decided I'd apply. So I sent my resume in, had a phone interview and then drove down to meet this family and see the house. I was in shock and awe about what a gorgeous house it was, and I was in love with the idea of having "my own place" that I readily accepted the job and packed up to go.
I stayed all of 2 months. The family was nice enough, my living space was generous enough, but I was lonely. I missed my family, my friends and most of all I missed Scott. So I gave my notice. And started packing up my stuff to go back home. I felt so down, like a total failure because I couldn't handle being away from everyone. Looking back I realize what an amazing experience that could have been for me if I stayed. But it was still eye opening for me.
I won't say my relationship with Scott has been easy. I've made quite a lot of mistakes and I truly wish I could take them all back. I love Scott with all my heart, but that moody, sullen, need to be wanted girl inside me needed to get out, she needed validation. I will also tell you I was unmedicated at the time, but honestly thats no excuse. I loved feeling wanted and desired. I loved having men flirt with me, hell having anyone flirt with me. But I've loved Scott all along and I truly regret everything I did to hurt him.
Scott really has made a lot of difference in my life. While we were living in Florida he told me if I kept cutting he'd leave me. The idea of loosing him scared the hell out of me. So I made the choice to grow up. So then why did I risk everything and cheat on him later? I have no idea. I was out of control, stupid and unmedicated. Thankfully, and obviously, Scott stayed with me through it all.
I've left out a lot of details about my shady past, and it's because I'm not quite ready to share them. I'm not proud of what I did. I'm actually rather ashamed of what I've done and how many people I've hurt along the way.
Well I couldn't wait, so the following night when I was headed into Bickfords again, I called him to see if he wanted to meet me there. And he did. I once again spent the evening chatting with him, but I had to be more considerate of the friend I was with this night, because she was pregnant. So at a decent hour, after eating our meals and paying the check, we said goodbye and went on our seperate ways. You think at that point I would have waited for the next night when I would see him for our date, but I didn't. I called him again and meet him at Bickfords once again.
The following night we had our "first" date, even though we'd already been out twice by now. We saw The Santa Claus 2 and went to dinner. He took me into Boston to go to a place at the top of the Pru, but they had just closed for the evening. So guess where we ended up? Bickfords! I chose to end the evening there, in fact I had chosen everything that night. And I seriously don't know why I thought going to a movie was a good idea for a first date, so I was glad that we had had dinner for the past 3 nights. I really got to know him in those first few days.
Still, I figured Scott would be like every other guy, couple of dates and I'd be bored. But it was shocking to me when I didn't call it quits by the 3rd date. Imagine my surprise to realize I'd fallen in love! We spent almost every night together, whether sitting at Bickfords, going to movies or just hanging out at his house. I was happy just to be with him.
The spring after I met Scott I was restless. I wanted to get a different/better job, so I started interviewing for a nanny job. I was orginally looking for something local, nearby. But I saw a live in ad in New Canaan, CT and decided I'd apply. So I sent my resume in, had a phone interview and then drove down to meet this family and see the house. I was in shock and awe about what a gorgeous house it was, and I was in love with the idea of having "my own place" that I readily accepted the job and packed up to go.
I stayed all of 2 months. The family was nice enough, my living space was generous enough, but I was lonely. I missed my family, my friends and most of all I missed Scott. So I gave my notice. And started packing up my stuff to go back home. I felt so down, like a total failure because I couldn't handle being away from everyone. Looking back I realize what an amazing experience that could have been for me if I stayed. But it was still eye opening for me.
I won't say my relationship with Scott has been easy. I've made quite a lot of mistakes and I truly wish I could take them all back. I love Scott with all my heart, but that moody, sullen, need to be wanted girl inside me needed to get out, she needed validation. I will also tell you I was unmedicated at the time, but honestly thats no excuse. I loved feeling wanted and desired. I loved having men flirt with me, hell having anyone flirt with me. But I've loved Scott all along and I truly regret everything I did to hurt him.
Scott really has made a lot of difference in my life. While we were living in Florida he told me if I kept cutting he'd leave me. The idea of loosing him scared the hell out of me. So I made the choice to grow up. So then why did I risk everything and cheat on him later? I have no idea. I was out of control, stupid and unmedicated. Thankfully, and obviously, Scott stayed with me through it all.
I've left out a lot of details about my shady past, and it's because I'm not quite ready to share them. I'm not proud of what I did. I'm actually rather ashamed of what I've done and how many people I've hurt along the way.
The story continues... Part 2
I went from being a skinny kid to be a moody, sullen overweight teenager with 2 big secrets. My first I already told you about, this is my second. I was a cutter. I would slice myself open, and then stop the bleeding, or I'd burn myself and call it an accident. I had excuses for anytime someone saw a cut or a burn. I would learn how to hide things better and better. Long sleeves and long pants became my wardrobe. I only got stitches twice, and that was when I was old enough to drive myself somewhere to get them. That's not to say I didn't need them more often, but I'd just wrap my arms or legs in gauze and tape til the bleeding stopped. I overdosed on diet pills, Tylenol and goodness knows what else the summer I was 15. My mom drove me to the hospital to have my stomach pumped. I wore an awful lot of dark clothing, and cried a lot. I yelled and screamed a lot, and I slammed an awful lot of doors. I'm surprised I didn't break any. Or have my bedroom door taken off the hinges.
I spent the first six weeks of my sophomore year in an outpatient DBT program. The school was supposed to send me a tutor to help me stay with my classes, only they never did. We didn't know about the tutor thing until the floor fell out from us later. When I tried to go back to school it was to the stares of all my classmates, and questions from people who I thought were my friends. Later that year I'd learn the truth about them. I was even more of an outcast now than I had been before. I liked attention at one point, but at this time I was overweight and super unhappy and was not a fan of being noticed. I couldn't keep up with what was going on in the classroom, nevermind catch up with ALL the assignments I missed while I was gone, and try to figure out the new assignments. To say I was lost was an understatement. My guidance counselor pulled me aside a month after my return and told me I wasn't going to graduate with my class anyway, so why keep torturing myself with school work that I could never catch up on? Why not just drop out for the year and come back the following year. Still being vulnerable (and still holding in the secret cutting - I never stopped I just got better at hiding it), I agreed to what she said and took what I thought was a leave of absence. The truth would come out the following year.
Suddenly I went from having friends to having no one. No one wanted to be friends with the girl who dropped out of school, who went missing from school twice. I was strange, different, and as far as anyone knew I had some serious issues going on. Which unfortunately was true, not that they really knew that. No one was close enough to me that I would share my secrets, and no one wanted to get to know me enough to learn anything about me. I felt so alone, and I was so low. I thought I hit bottom.
I tried to return to school the following year, but the same guidance counselor tried to tell me I wasn't ready to return, that I wasn't strong enough to deal with all the pressure of classes and the questions from the kids. What my thoughts were was, how the hell does this woman know what I am and am not ready for? But she blocked my return for another year. So the following year, I was just about 18 at this point, I fought to go back to school. My mother fought with me. Together we were successful and I returned to school as a sophomore. Most of my friends were seniors at this point, and a lot had graduated the year before. It was beyond strange to be a sophomore when all the people I thought were my friends were seniors. So feeling strange being 18 and just a sophomore, I dropped out and said I'd get my GED. At this time I was down to two friends. Everyone stopped talking to me when I took the leave of absence originally. Turns out I didn't really have friends after all. I turned to the Internet at this point. I would meet random guys in chat rooms, talk with them for a bit and we'd meet up somewhere. Never more than a date or two, but it wasn't about having a steady guy. No, I liked that initial feeling in a relationship. That can't eat, can't sleep, can't think feeling is what I was always after. I was back to wanting attention, and as long as someone wanted me I was happy.
I worked full time at various different jobs, and got my GED. I was an unmedicated bipolar, so keeping a job was tough for me. This is probably the reason for all the guys in and out of my life as well, but I wouldn't understand that until later. In fact I wouldn't understand much about my disease until later.
I spent the first six weeks of my sophomore year in an outpatient DBT program. The school was supposed to send me a tutor to help me stay with my classes, only they never did. We didn't know about the tutor thing until the floor fell out from us later. When I tried to go back to school it was to the stares of all my classmates, and questions from people who I thought were my friends. Later that year I'd learn the truth about them. I was even more of an outcast now than I had been before. I liked attention at one point, but at this time I was overweight and super unhappy and was not a fan of being noticed. I couldn't keep up with what was going on in the classroom, nevermind catch up with ALL the assignments I missed while I was gone, and try to figure out the new assignments. To say I was lost was an understatement. My guidance counselor pulled me aside a month after my return and told me I wasn't going to graduate with my class anyway, so why keep torturing myself with school work that I could never catch up on? Why not just drop out for the year and come back the following year. Still being vulnerable (and still holding in the secret cutting - I never stopped I just got better at hiding it), I agreed to what she said and took what I thought was a leave of absence. The truth would come out the following year.
Suddenly I went from having friends to having no one. No one wanted to be friends with the girl who dropped out of school, who went missing from school twice. I was strange, different, and as far as anyone knew I had some serious issues going on. Which unfortunately was true, not that they really knew that. No one was close enough to me that I would share my secrets, and no one wanted to get to know me enough to learn anything about me. I felt so alone, and I was so low. I thought I hit bottom.
I tried to return to school the following year, but the same guidance counselor tried to tell me I wasn't ready to return, that I wasn't strong enough to deal with all the pressure of classes and the questions from the kids. What my thoughts were was, how the hell does this woman know what I am and am not ready for? But she blocked my return for another year. So the following year, I was just about 18 at this point, I fought to go back to school. My mother fought with me. Together we were successful and I returned to school as a sophomore. Most of my friends were seniors at this point, and a lot had graduated the year before. It was beyond strange to be a sophomore when all the people I thought were my friends were seniors. So feeling strange being 18 and just a sophomore, I dropped out and said I'd get my GED. At this time I was down to two friends. Everyone stopped talking to me when I took the leave of absence originally. Turns out I didn't really have friends after all. I turned to the Internet at this point. I would meet random guys in chat rooms, talk with them for a bit and we'd meet up somewhere. Never more than a date or two, but it wasn't about having a steady guy. No, I liked that initial feeling in a relationship. That can't eat, can't sleep, can't think feeling is what I was always after. I was back to wanting attention, and as long as someone wanted me I was happy.
I worked full time at various different jobs, and got my GED. I was an unmedicated bipolar, so keeping a job was tough for me. This is probably the reason for all the guys in and out of my life as well, but I wouldn't understand that until later. In fact I wouldn't understand much about my disease until later.
Sunday, June 10, 2012
My story... Part 1
I'd like to tell you a story, if I may. It may seem crazy, but it's all true. I found myself writing it out, and as I reread it, I'd put in more detail. As I was writing I'd remember more details than I ever thought I would. Its been an awesome experience writing this all out. I've always assumed that it was forgotten, never to be remembered again. I just can't believe how much I have been able to remember, to recall without really trying to. So I don't bore you all at one, I'm going to tell it in parts. This is my story…
I've always been a drama queen, always. I love being the center of attention, any kind of attention. As a kid I'd cover myself with band aids and at first people were curious what was wrong. Then they started calling me the band aid queen when it became evident that I was never hurt. As a kid I found myself stuck in a neighborhood with all boys. I'd play football, baseball, basketball and even hockey, just so they'd pay attention to me. We played tag, hide and go seek and other kinds of games. As we got older we'd play truth or dare, and we'd always try to one up each other.
But that's not exactly where my story starts. My story starts at the age of 12, in the summer of 1996. I was just coming into a fresh new batch of hormones, so when a former child my mother cared for returned to our lives I couldn't help but be thrilled. He was 18, and he was gorgeous! So when he started coming around every day to hang out with us (me, my brothers, and all the foster kids) I was pleased. I got to know him as fun and playful, he became a good friend to all of us. He would come over and swim, hang out and play games, and sometimes just watch tv. I should have been scared when he first started flirting with me, but I was 12, and oh so full of hormones. I was excited that he chose me over my foster sister (who I thought was much prettier than I was). She was older so really I was not the logical choice to be the object of this boys attention. But his intentions were not good, but that's later in the story.
As the summer continued on he kissed me, and not just once, a lot. Anywhere people couldn't see us, he would kiss me. He was my first kiss and I thought life couldn't get any better. One day he called me up, wanted me to come visit at his house. My mom had told me I couldn't go alone, that I had to bring my foster sister with me, so I did. When he brought me into a bedroom (under the pretense he wanted to show me something) my heart fluttered. I really thought, in my 12 year old mind, that I was in love. He started kissing me, and after awhile my foster sister got mad and called out she was leaving. And she did leave, but I don't blame her. Had it been her back there and me in the living room alone I would have left too. He took advantage then and pushed me down on the bed and kept kissing me. Before I knew it he was on top of me and being very agressive. I couldn't move, it was hard to breath and I kept telling him to get off me. He undid his pants, and then pulled down mine, and it was the longest 10 minutes of my life. It hurt and I just kept crying for him to stop and to get off me. I kept telling him no over and over again. It stretched on forever, time seemed to freeze, I felt like I was being split into two.
Never again would life be the same, I knew that already. I didn't know what would happen next, if he'd kill me, or hurt me more or what, but I knew things had forever changed. He let me leave when he was done, but not without throwing an ant farm at me, and issuing a threat. The exact words of the threat I do not remember, but I haven't been afraid of him for many years. For awhile I kept track of him, where he lived, how far away that was, and etc. As long as I knew that I was able to leave the house, to walk down the street without fear.
After that I became a shut in of sorts. I'd walk to the convenient store, use my allowance to buy junk food, and go back home and spend the week eating junk. Plus I'd eat whatever snacks I could get at home. I spent most of the next few years with a couple of close friends, and if I wasn't with them, I'd be locked in my room, writing. This is about the time I'd start keeping a second secret.
I've always been a drama queen, always. I love being the center of attention, any kind of attention. As a kid I'd cover myself with band aids and at first people were curious what was wrong. Then they started calling me the band aid queen when it became evident that I was never hurt. As a kid I found myself stuck in a neighborhood with all boys. I'd play football, baseball, basketball and even hockey, just so they'd pay attention to me. We played tag, hide and go seek and other kinds of games. As we got older we'd play truth or dare, and we'd always try to one up each other.
But that's not exactly where my story starts. My story starts at the age of 12, in the summer of 1996. I was just coming into a fresh new batch of hormones, so when a former child my mother cared for returned to our lives I couldn't help but be thrilled. He was 18, and he was gorgeous! So when he started coming around every day to hang out with us (me, my brothers, and all the foster kids) I was pleased. I got to know him as fun and playful, he became a good friend to all of us. He would come over and swim, hang out and play games, and sometimes just watch tv. I should have been scared when he first started flirting with me, but I was 12, and oh so full of hormones. I was excited that he chose me over my foster sister (who I thought was much prettier than I was). She was older so really I was not the logical choice to be the object of this boys attention. But his intentions were not good, but that's later in the story.
As the summer continued on he kissed me, and not just once, a lot. Anywhere people couldn't see us, he would kiss me. He was my first kiss and I thought life couldn't get any better. One day he called me up, wanted me to come visit at his house. My mom had told me I couldn't go alone, that I had to bring my foster sister with me, so I did. When he brought me into a bedroom (under the pretense he wanted to show me something) my heart fluttered. I really thought, in my 12 year old mind, that I was in love. He started kissing me, and after awhile my foster sister got mad and called out she was leaving. And she did leave, but I don't blame her. Had it been her back there and me in the living room alone I would have left too. He took advantage then and pushed me down on the bed and kept kissing me. Before I knew it he was on top of me and being very agressive. I couldn't move, it was hard to breath and I kept telling him to get off me. He undid his pants, and then pulled down mine, and it was the longest 10 minutes of my life. It hurt and I just kept crying for him to stop and to get off me. I kept telling him no over and over again. It stretched on forever, time seemed to freeze, I felt like I was being split into two.
Never again would life be the same, I knew that already. I didn't know what would happen next, if he'd kill me, or hurt me more or what, but I knew things had forever changed. He let me leave when he was done, but not without throwing an ant farm at me, and issuing a threat. The exact words of the threat I do not remember, but I haven't been afraid of him for many years. For awhile I kept track of him, where he lived, how far away that was, and etc. As long as I knew that I was able to leave the house, to walk down the street without fear.
After that I became a shut in of sorts. I'd walk to the convenient store, use my allowance to buy junk food, and go back home and spend the week eating junk. Plus I'd eat whatever snacks I could get at home. I spent most of the next few years with a couple of close friends, and if I wasn't with them, I'd be locked in my room, writing. This is about the time I'd start keeping a second secret.
Thursday, May 31, 2012
Feeling rather discouraged today and I'm not sure if I want to continue on this journey or try again later… Scott says keep going, I just want to quit…
Apparently Thursday has become my cleaning day. I spend most of Thursday cleaning my house and it just occurred to me today that it's usually on a Thursday because that is the one day I have free (well Wednesday is free too but I spend that doing laundry cause my dad is gone and I don't get in his way). But Monday my niece and nephew are at my mothers house, Tuesday and Friday I have Haylee and Wednesday I reserve for laundry. Weekends we spend running errands. So yea I guess I keep pretty busy really. I spent a good part of the day scrubbing out my fridge. Something oozed and leaked from the top shelf all the way to the bottom! Gross! At least my fridge got a good scrub down today though.
I seriously spent all day cleaning! I scrubbed and vacuumed and cleaned everything! Seriously if I didn't know better I would think I was nesting! I KNEW I should have stopped, or at least not done sooo much but I just couldn't! Something was pushing me to keep going! And every time I'd get one thing done I'd think of 3 others I could do! There was just something driving me forward, pushing me on, that I just couldn't stop! I don't think I've ever done so much in one day! I didn't even feel like this when I was pregnant with Grace. So what was it today? Adulthood finally setting in? Being stir crazy? Wanting to shop but conserving funds? I just don't get it!
I'm really getting excited for Graces birthday party coming up in a couple months! I'm gonna to decorate the screen house outside with streamers and balloons and make it look cute. We will have tables with cute pink and white table cloths on them covered with food, and hopefully I'll have a little pool for the kids to play in (definitely will have the sprinkler going for them!). Everything will be pink, purple and white, and I'll definitely have a cute tiara for Grace to wear (I hope she'll wear it hehe). I've already got a cute dress for her to wear. Or at least 3 to choose from lol.
Broke my glasses today and we can't find the repair kit :-( My poor eye is killing me! And watering like crazy…Totally made Scott go to cvs and buy the repair kit, can't wait til he gets home and fixes them for me! I'd do it myself but I'm having a hard enough time seeing the keys to write this now lol. If I close my right eye (the bad one) it's not so bad, but then the left one craps out after awhile cause its doing all the work…
Sweet dreams and be well…
Apparently Thursday has become my cleaning day. I spend most of Thursday cleaning my house and it just occurred to me today that it's usually on a Thursday because that is the one day I have free (well Wednesday is free too but I spend that doing laundry cause my dad is gone and I don't get in his way). But Monday my niece and nephew are at my mothers house, Tuesday and Friday I have Haylee and Wednesday I reserve for laundry. Weekends we spend running errands. So yea I guess I keep pretty busy really. I spent a good part of the day scrubbing out my fridge. Something oozed and leaked from the top shelf all the way to the bottom! Gross! At least my fridge got a good scrub down today though.
I seriously spent all day cleaning! I scrubbed and vacuumed and cleaned everything! Seriously if I didn't know better I would think I was nesting! I KNEW I should have stopped, or at least not done sooo much but I just couldn't! Something was pushing me to keep going! And every time I'd get one thing done I'd think of 3 others I could do! There was just something driving me forward, pushing me on, that I just couldn't stop! I don't think I've ever done so much in one day! I didn't even feel like this when I was pregnant with Grace. So what was it today? Adulthood finally setting in? Being stir crazy? Wanting to shop but conserving funds? I just don't get it!
I'm really getting excited for Graces birthday party coming up in a couple months! I'm gonna to decorate the screen house outside with streamers and balloons and make it look cute. We will have tables with cute pink and white table cloths on them covered with food, and hopefully I'll have a little pool for the kids to play in (definitely will have the sprinkler going for them!). Everything will be pink, purple and white, and I'll definitely have a cute tiara for Grace to wear (I hope she'll wear it hehe). I've already got a cute dress for her to wear. Or at least 3 to choose from lol.
Broke my glasses today and we can't find the repair kit :-( My poor eye is killing me! And watering like crazy…Totally made Scott go to cvs and buy the repair kit, can't wait til he gets home and fixes them for me! I'd do it myself but I'm having a hard enough time seeing the keys to write this now lol. If I close my right eye (the bad one) it's not so bad, but then the left one craps out after awhile cause its doing all the work…
Sweet dreams and be well…
Wednesday, May 30, 2012
I can't seem to shake this down mood I'm in. It's like a heavy coat that I can't take off. The zipper is stuck or something, and the more I struggle the more oppressive it feels. I'm not sure what to do. I don't have an appointment with my psychiatrist til June 11, and right now that seems so far away. I can't help but think back to around the holidays when I sunk and couldn't get back up. I want to climb out, I just can't seem to find a hold to help hoist me out…
I find myself comparing myself to others. How I look, act and parent. I'm feeling so low about things that I just don't know what to do anymore. This is usually where I'd go buy myself some new clothes to make myself feel better, especially since my big, baggy, summer clothes make me feel absolutely huge right now. But I'm trying to save money and refrain from shopping. I keep thinking that if I loose the extra weight I'll feel better, so you'd think I'd be trying super hard to loose the weight, but like everything else in my life I suck at dieting and exercising. I don't know why, cause when I was working out and loosing the weight I, at least, was proud of myself. Now I'm back to being a big blob. I keep telling myself that tonight's the night! I'll get back into working out and I'll stick with it! Then after Grace is asleep I just sit on the couch and watch tv again. I don't want to be a big fat blob forever…
We started potty training Grace today, we've had to change her 5 times, but she's gone more often then not. She played Lego Harry Potter tonight and it was so cute watching her play and hearing her giggles. She's getting so good at playing the game! She really does well and is even starting to understand how to "cast spells" and collect the money in the game. I can't believe she's going to be 3 soon.
So I started the day feeling so low and just wanting to cry, and ended it with a giggle while my girl and I talked like bugs bunny.
Sweet dreams and be well…
I find myself comparing myself to others. How I look, act and parent. I'm feeling so low about things that I just don't know what to do anymore. This is usually where I'd go buy myself some new clothes to make myself feel better, especially since my big, baggy, summer clothes make me feel absolutely huge right now. But I'm trying to save money and refrain from shopping. I keep thinking that if I loose the extra weight I'll feel better, so you'd think I'd be trying super hard to loose the weight, but like everything else in my life I suck at dieting and exercising. I don't know why, cause when I was working out and loosing the weight I, at least, was proud of myself. Now I'm back to being a big blob. I keep telling myself that tonight's the night! I'll get back into working out and I'll stick with it! Then after Grace is asleep I just sit on the couch and watch tv again. I don't want to be a big fat blob forever…
We started potty training Grace today, we've had to change her 5 times, but she's gone more often then not. She played Lego Harry Potter tonight and it was so cute watching her play and hearing her giggles. She's getting so good at playing the game! She really does well and is even starting to understand how to "cast spells" and collect the money in the game. I can't believe she's going to be 3 soon.
So I started the day feeling so low and just wanting to cry, and ended it with a giggle while my girl and I talked like bugs bunny.
Sweet dreams and be well…
So I was doing some reading earlier about this pain that I have in my face and head, and apparently I'm rare there too cause usually trigeminal neuralgia is just occasional bouts of sharp, shooting, electrifying pain, it's rare for it to be constant like mine is. Anyway, my face and head are VERY sensitive to touch already (usual) and from what I was reading its only going to get worse. Like curled-up-in-the-fetal-position-crying-cause-I-tried-to-put-on-make-up bad. And that scares me. It's already bad enough some days that the idea it just might probably get worse is terrifying. Do I really want to have another kid someday knowing my fate? Wasn't the possibility of Alzheimer's enough? The possibility of cancer again enough? Do I need to add this in too? It's scary. No it's terrifying. And simply put it just plain sucks. I want another baby, I really do. But I'm already a shit mother to Grace… I seriously don't know why God gave me her because I'm so beyond messed up and I'm just AWFUL at being a mother… She's going to grow up and hate me… I already hate me, so I don't see how she couldn't. And if she's got bipolar too she's really going to hate me… I keep promising I'm going to try harder and be better but I'm always fucking up. I can't seem to do anything right and it's so damn depressing and discouraging. I can't stand seeing my face in the mirror knowing what a fuck up I am… I just don't see how Grace could love me, how ANYONE could love me…
Monday, May 28, 2012
A Night off…
Taking the night off from posting much tonight. Day was uneventful and the Ativan from last night has left me feeling like junk all day! Or it could be the extremely long road trip yesterday, lol. Not that I think anyone reads this, maybe if I gave away a prize or something every so often someone would read it lol. Well I'm off.
Sweet dreams and be well…
Sweet dreams and be well…
Sunday, May 27, 2012
Day trip!
Started the day off packing a bag for Grace to entertain her on our 4+ hour drive and getting ready! Seems my ice didn't completely freeze, but that's okay. We survived! 4+ hours in a car, can ya guess where we went? I'll drop more clues as I talk about the car trip!
Passing by the exit for old Sturbridge village made me realize just how far we were going, and we still had a long time to travel! We got on 84 and kept driving! First stop, Connecticut welcome center, to stretch legs, change a diaper and walk around a bit! Surprisingly Grace had done very well thus far!
Going down 95, just before exit 42 in connecticut we saw a deer watching the cars as they passed by! How adorable! She was on the small side and oh so adorable! Hope she didn't try to cross!
We crossed over into New York and headed to our destination - Broadway! Okay so we weren't going to SEE anything being preformed on Broadway, we had a little restaurant in mind - Steak N Shake! Right next to the Late Show studio. Yeah we essentially drove 4+ hours to eat at a steak and shake. Now let me save my brother some trouble, it was tiny, crowded and not like the ones in Florida. Even the food wasn't that spectacular. But it was an experience I won't soon forget I'm sure. We walked around Broadway a little, but with a toddler that had been cooped up in a car for so long it was a short visit (not to mention it was getting close to 5 and we wanted to start heading home). We've already discussed doing a weekend down there at some point when money is a little freer and we can splurge a little :-). But of course I still sent pictures to people I kept hoping to make jealous lol. And of course we stopped at Roy Rogers at exit 1 off I-84. And yup pictures were sent to the appropriate people again :-)
Grace did wonderful in the car for the whole trip! I was so proud of her! She spent 8+ hours in a car today and she did spectacular! I, on the other hand, had a killer headache and started to feel sick on the way home. Napped for like 20 minutes while Grace played on the 3DS and then nibbled some peanut butter crackers and at least my stomach settled, 2 grams of tylenol and my head was still killing me. Took an Ativan when I got home so hopefully that helps.
I guess this will be the last time I tell Scott I wanna do something fun lol! Especially when I know he's itching to go to steak and shake lol! But all in all it was a good day. And I'm glad I got to spend it with my 2 favorite people. Even if it was in a car hehe.
Sweet dreams and be well...
Passing by the exit for old Sturbridge village made me realize just how far we were going, and we still had a long time to travel! We got on 84 and kept driving! First stop, Connecticut welcome center, to stretch legs, change a diaper and walk around a bit! Surprisingly Grace had done very well thus far!
Going down 95, just before exit 42 in connecticut we saw a deer watching the cars as they passed by! How adorable! She was on the small side and oh so adorable! Hope she didn't try to cross!
We crossed over into New York and headed to our destination - Broadway! Okay so we weren't going to SEE anything being preformed on Broadway, we had a little restaurant in mind - Steak N Shake! Right next to the Late Show studio. Yeah we essentially drove 4+ hours to eat at a steak and shake. Now let me save my brother some trouble, it was tiny, crowded and not like the ones in Florida. Even the food wasn't that spectacular. But it was an experience I won't soon forget I'm sure. We walked around Broadway a little, but with a toddler that had been cooped up in a car for so long it was a short visit (not to mention it was getting close to 5 and we wanted to start heading home). We've already discussed doing a weekend down there at some point when money is a little freer and we can splurge a little :-). But of course I still sent pictures to people I kept hoping to make jealous lol. And of course we stopped at Roy Rogers at exit 1 off I-84. And yup pictures were sent to the appropriate people again :-)
Grace did wonderful in the car for the whole trip! I was so proud of her! She spent 8+ hours in a car today and she did spectacular! I, on the other hand, had a killer headache and started to feel sick on the way home. Napped for like 20 minutes while Grace played on the 3DS and then nibbled some peanut butter crackers and at least my stomach settled, 2 grams of tylenol and my head was still killing me. Took an Ativan when I got home so hopefully that helps.
I guess this will be the last time I tell Scott I wanna do something fun lol! Especially when I know he's itching to go to steak and shake lol! But all in all it was a good day. And I'm glad I got to spend it with my 2 favorite people. Even if it was in a car hehe.
Sweet dreams and be well...
Saturday, May 26, 2012
So Scott's thinking a day trip tomorrow! I think we are completely nuts but it might be doable! I'm worried about traffic, and how Grace will do in the car for so long but I'm kind of excited for it. I'll detail our trip tomorrow and post all about it :-) I might even have some cool pictures to post!
Grace was our little shopping buddy today, as usual. But today she insisted on carrying the bags herself! She was so cute walking around the mall with her little bags!
Sweet dreams and be well!
Grace was our little shopping buddy today, as usual. But today she insisted on carrying the bags herself! She was so cute walking around the mall with her little bags!
Sweet dreams and be well!
Friday, May 25, 2012
Yay! It's Friday!
Babysat my niece and now on to a 3 day weekend with my family! Looking for some suggestions for fun things to do (that won't cost an arm and a leg), so ideas would be great!
Grace woke up and after her usually smiley good morning she said "I want to play Legos". Oops! Guess I've created a monster lol. The novelty will wear off soon enough and she'll move on to something different, just like with the computer. She still plays on it, just not as much.
It's been a long day and I'm exhausted! By Friday I am so wiped out that I can barely keep my eyes open… so with that I'm signing out. Don't have much planned for this weekend, thankfully, so hopefully I can relax a little. Well,
Be well…
Babysat my niece and now on to a 3 day weekend with my family! Looking for some suggestions for fun things to do (that won't cost an arm and a leg), so ideas would be great!
Grace woke up and after her usually smiley good morning she said "I want to play Legos". Oops! Guess I've created a monster lol. The novelty will wear off soon enough and she'll move on to something different, just like with the computer. She still plays on it, just not as much.
It's been a long day and I'm exhausted! By Friday I am so wiped out that I can barely keep my eyes open… so with that I'm signing out. Don't have much planned for this weekend, thankfully, so hopefully I can relax a little. Well,
Be well…
Thursday, May 24, 2012
I've been super busy this week with appointments, babysitting my niece, and helping others (nope not complaining), so I've let the clean up slide a little. Okay, okay, a lot! So because I'm babysitting my niece again tomorrow I've gotta get off my butt and do it all today. Easier said than done, as all moms to young kids know! Grace helps me clean up, but when I move on to another section she plays in the freshly cleaned section a little lol. It's okay, at least she's having fun and learning to clean too!
She woke up talking about using the potty, so either she had some weird dreams or she's ready to start potty training full force. She goes occasionally but nothing consistent yet. She'll do it when she's ready, right? Right?!? Lol I know she will. I just wish it would be soon! I'm so tired of diapers really.
Grace is sitting here playing Lego Harry Potter and it's amazing how well she is doing with it. She has no idea what the object to the game is, but she's having fun. And really the "you're the greatest, mom" comments every time I help her with something in the game is a nice ego boost lol.
I just have to say, sometimes being a persistent bitch is a good thing! It definitely paid off tonight! My mom lost something today, a piece of jewelry, and the first place she had been was a Starbucks in Billerica. We get there at just after 8 and find they closed at 8. But luck be with us, there were 2 people inside! I knocked and the first guy tried to convince me he couldn't unlock the door, as if I was just some Starbucks junky or something. I kept knocking until the second guy appeared and HE opened the door! They had the item! My mom was so happy! I was happy that I could help her!! Sometimes it pays to just keep knocking I guess.
I'm trying to figure out if the hypothalamus can repair itself. And everything I've read just confuses me more… No one anywhere says whether or not it can, and I'd really like to know. Guess I'll have to just suck it up and talk to a doctor, no matter how stupid that question makes me sound. Although if anyone out there has the answer, or could get the answer that would be awesome.
Be well all…
She woke up talking about using the potty, so either she had some weird dreams or she's ready to start potty training full force. She goes occasionally but nothing consistent yet. She'll do it when she's ready, right? Right?!? Lol I know she will. I just wish it would be soon! I'm so tired of diapers really.
Grace is sitting here playing Lego Harry Potter and it's amazing how well she is doing with it. She has no idea what the object to the game is, but she's having fun. And really the "you're the greatest, mom" comments every time I help her with something in the game is a nice ego boost lol.
I just have to say, sometimes being a persistent bitch is a good thing! It definitely paid off tonight! My mom lost something today, a piece of jewelry, and the first place she had been was a Starbucks in Billerica. We get there at just after 8 and find they closed at 8. But luck be with us, there were 2 people inside! I knocked and the first guy tried to convince me he couldn't unlock the door, as if I was just some Starbucks junky or something. I kept knocking until the second guy appeared and HE opened the door! They had the item! My mom was so happy! I was happy that I could help her!! Sometimes it pays to just keep knocking I guess.
I'm trying to figure out if the hypothalamus can repair itself. And everything I've read just confuses me more… No one anywhere says whether or not it can, and I'd really like to know. Guess I'll have to just suck it up and talk to a doctor, no matter how stupid that question makes me sound. Although if anyone out there has the answer, or could get the answer that would be awesome.
Be well all…
I am who I am
It was a typical Wednesday in the Cameron house. Grace was her typical stubborn, high spirited self, Scott was busy at work, and I spent the day not wanting to do anything. And I ended up picking up my brother-in-law from work, having to go to TWO pharmacies for one of my prescriptions, and then coming home and packing my mothers Avon order for her (cause she works at my brothers garage all day on Wednesday and had an Avon meeting tonight [and in all honesty I enjoy it lol]), and then I got to make a yummy dinner for everyone. Scott went off to his meeting, and Grace and I spent some time snuggling and playing. Boring day, huh? Lol it's okay I think it too sometimes.
I've been dreaming about getting in the car and just driving lately. See where the road takes me, definitely visit Maggie's grave. I'm just feeling restless really. I need to do something, go somewhere or something...
I've really missed writing. It's a good outlet for me, always has been. I used to write poems all the time, my grandfather thought I could go places with it. I'm sorry I disappointed him. I stopped writing ten years ago and I've barely kept up here since I created it 3 years ago. And I created it to be my outlet, the one place I could talk, write, and say ANYTHING I've wanted, but I always find myself not saying things cause I'm afraid how people will react to things. But I seem to have grown a backbone lately because I'm saying more of what's on my mind. That, or my meds are really loosening me up lol. Someday I hope I can get back into writing, make something of myself, and make my grandfather proud. Make my daughter proud.
It's getting late and I really should be going to bed, and I'm quite sure you've stopped reading by now because I've said absolutely nothing of importance or interest. This would probably be the best time to tell a secret or something, but I don't have any lol. It's a shame really cause it would be interesting to see how many of you actually read what I write. See if anyone still reads this. I'm not interesting anymore, cancer's gone, shows no signs of coming back, pain is nothing more than nerve damage, and I've got no secrets to let out. Yeah I'm pretty boring but someday I'm pretty sure I'll have a secret to share, and I just may do it in a boring, run of the mill post. So stay on your toes for now. And hey, if you did get this far, leave a comment ;-). And who knows, maybe there will be a secret to share someday soon ;-)
Be well all...
I've been dreaming about getting in the car and just driving lately. See where the road takes me, definitely visit Maggie's grave. I'm just feeling restless really. I need to do something, go somewhere or something...
I've really missed writing. It's a good outlet for me, always has been. I used to write poems all the time, my grandfather thought I could go places with it. I'm sorry I disappointed him. I stopped writing ten years ago and I've barely kept up here since I created it 3 years ago. And I created it to be my outlet, the one place I could talk, write, and say ANYTHING I've wanted, but I always find myself not saying things cause I'm afraid how people will react to things. But I seem to have grown a backbone lately because I'm saying more of what's on my mind. That, or my meds are really loosening me up lol. Someday I hope I can get back into writing, make something of myself, and make my grandfather proud. Make my daughter proud.
It's getting late and I really should be going to bed, and I'm quite sure you've stopped reading by now because I've said absolutely nothing of importance or interest. This would probably be the best time to tell a secret or something, but I don't have any lol. It's a shame really cause it would be interesting to see how many of you actually read what I write. See if anyone still reads this. I'm not interesting anymore, cancer's gone, shows no signs of coming back, pain is nothing more than nerve damage, and I've got no secrets to let out. Yeah I'm pretty boring but someday I'm pretty sure I'll have a secret to share, and I just may do it in a boring, run of the mill post. So stay on your toes for now. And hey, if you did get this far, leave a comment ;-). And who knows, maybe there will be a secret to share someday soon ;-)
Be well all...
Tuesday, May 22, 2012
Mental block
Okay so I know my meds make me feel better, and I know that they make me a better person, so why is it I keep forgetting to take them? I have like a HUGE mental block against taking them. And usually by the time I remember it's either dinner time and too late for the morning meds or the middle of the night and too late for the night meds. It's awful! I remembered to take them TWO days last week. And I was miserable! I was up, I was down, I was super irritable! I was snapping at everyone and I knew it. All I had to do was remember those 10 pills in the morning and those 8 pills at night and I'm a much happier person, and I have a lot more energy. I actually WANT to do things when I take them the right way, so why the mental block? Ideas and suggestions welcome on any ways to better take these damn pills would be very welcome! I've tried setting alarms, leaving my pills in plain sight and even leaving them with something I see every morning and every night. I just don't know what else to try! So please, give me suggestions!
Be well...
Be well...
Realizations...
I realized something yesterday. I am absolutely petrified at the idea of becoming pregnant again someday. I mean seriously, look at my history. My first time being pregnant and I end up with cancer. Yes it was just a random coincidence but still! Who WOULDN'T be petrified? All hell broke loose when I last had a baby... No wonder I'm not fighting Scott harder for another baby... Let's look at a possible what if future, I get pregnant and everything is fine, yay! But what if I get pregnant and I get sick again? How the hell would I go through 8 or so months of chemo with TWO kids? It was hard enough with one. Grace is turning 3 soon and I still feel guilty I couldn't be a proper mother for her those first 8 months of her life. It makes me feel shitty just looking back on that time and knowing that I technically wasn't there for her 3 weeks out of 4 in a month. And I know Grace wants a brother or a sister, she has imaginary ones all the time when she's playing, but I'm so petrified. Not to mention that the fertility treatments would up my risk of other cancers! It's a no win for me. Either I step off this ledge and hope the next step is still there, or risk falling into oblivion again. I just don't know if I'm strong enough for another fall.
Be well
Be well
Monday, April 2, 2012
Who knew?
I've had an awful feeling in the pit of my stomach lately, I'm praying so hard that it's nothing, but I'll prepare myself for the worst. Last time I had this feeling Maggie died and it still catches me by surprise how I can miss someone so much when in all honesty I barely knew the girl she was, I only knew the woman the cancer made her into, but maybe that's enough.
Grace is thriving and growing like a weed! She talks non-stop and everyone understands her, so that makes me proud. She asks to go to school anytime she hears the word (so its became a bad word in this house until September when she starts school :-)). She loves to play candy land and ants in the pants (and is also learning how to play operation - toy story version hehe.) She loves the outdoors and all things electronic. She plays on the computer, on the iPhones and the iPad better than some adults. She's so smart and remembers EVERYTHING! We took the fence around the computers down and now she has access to my laptop all the time. She's getting much better with the computer.
I've had to go back on my pain management meds because of some really bad pain, but at least I had 4 months pain free without the meds.
Scotts still working, and still at home so he doesn't miss a thing with Grace. Somedays I think he wishes he worked outside the house (the days were Grace is acting up quite a bit lol.)
Can I take a minute here and be brutally honest? Well of course I can because it's my blog and hell, I can say what I want. Don't like it? Then don't read it. I'm tired of tip toeing around and being nice when all I want to do is say what I'm feeling. So with that out of the way, I just want to say that with every pregnancy announcement and every baby born my heart aches and my empty womb screams. I try to put on a brave face and act all "I don't want another baby", but I do. I really, really do. I feel empty and hollow sometimes. It's an ache I can't quite conquer and I hate it.
Well I'm off to play with the princess for a bit. She is on the computer (again) and just asked for help. So I'm gonna do that, then take her to bed where I'll snuggle her tight and enjoy every moment.
Be well...
Grace is thriving and growing like a weed! She talks non-stop and everyone understands her, so that makes me proud. She asks to go to school anytime she hears the word (so its became a bad word in this house until September when she starts school :-)). She loves to play candy land and ants in the pants (and is also learning how to play operation - toy story version hehe.) She loves the outdoors and all things electronic. She plays on the computer, on the iPhones and the iPad better than some adults. She's so smart and remembers EVERYTHING! We took the fence around the computers down and now she has access to my laptop all the time. She's getting much better with the computer.
I've had to go back on my pain management meds because of some really bad pain, but at least I had 4 months pain free without the meds.
Scotts still working, and still at home so he doesn't miss a thing with Grace. Somedays I think he wishes he worked outside the house (the days were Grace is acting up quite a bit lol.)
Can I take a minute here and be brutally honest? Well of course I can because it's my blog and hell, I can say what I want. Don't like it? Then don't read it. I'm tired of tip toeing around and being nice when all I want to do is say what I'm feeling. So with that out of the way, I just want to say that with every pregnancy announcement and every baby born my heart aches and my empty womb screams. I try to put on a brave face and act all "I don't want another baby", but I do. I really, really do. I feel empty and hollow sometimes. It's an ache I can't quite conquer and I hate it.
Well I'm off to play with the princess for a bit. She is on the computer (again) and just asked for help. So I'm gonna do that, then take her to bed where I'll snuggle her tight and enjoy every moment.
Be well...
Saturday, March 17, 2012
Faith of the Heart
Its almost April 2 and April 2 marks a special day for me. This year it marks my second year cancer free. And according to my oncologist, the amazing Dr. Adam Crystal, its a year to celebrate because the chances of my cancer coming back now are so slim its just about gone. It was 2 years, 8 months ago that I sat in the car and told Scott that my theme song would be Faith of the Heart by Rod Stewart (a few weeks before that I named my tumor Melvin, but he's long gone now). I listened to that song a lot, especially on those long boring days and nights in the hospital during chemo. I felt a strength come from the song, and I just knew that one day I'd be healthy, and would be able to look back and see what a long road its been. And although I have 3 more years before I hit "cured" I can breath a little more now, because instead of a check up every 3 months, I get to go every 6 months. At the 5 year mark I'll switch to 1 year scans for the remainder of my life, a small price to pay for my life. But for now I'll enjoy my life one day at a time, and continue to try to make the most out of every little moment that I can.
It's been a long road, Getting from there
It's been a long road, Getting from there
To here.
It's been a long time, but my time is finally near.
I can feel a change in the wind right now, Nothings in my way. And they're not gonna hold me down no more, no they're not gonna hold me down. Cause I've got faith of the heart,
I'm going where my heart will take me, I've got faith to believe, I can do anything. I've got strength of the soul, and no one's gonna bend or break me, I can reach any star
I've got faith, faith of the heart. Its been a long night, trying to find my way. Been through the darkness, now I finally have my day
And I will see my dreams come alive at last, I will touch the sky
And they're not gonna hold me down no more, no they're not gonna change my mind. Cause I've got faith, of the heart, I'm going where my heart will take me, I've got faith to believe I can do anything. I've got strength of the soul, no one's gonna bend or break me, I can reach any star, I've got faith, faith of the heart. I've known a wind so cold, I've seen the darkest days
But now the winds I feel are only winds of change. I've been through the fire and I've been through the rain but I'll be fine. Cause I've got faith, of the heart, I'm going where my heart will take me, I've got faith to believe I can do anything. I've got strength of the soul, no one's gonna bend or break me, I can reach any star, I've got faith, I've got faith, faith of the heart. It's been a long road....
Be well all...
Monday, February 27, 2012
School, beds and scans...
We went and looked at a preschool recently, and Grace played for an hour! Small class sizes had me feeling good, plus the teachers were really nice and Grace seemed to really love it, so we secured a spot for her to start in September! I can't believe it's that time already! Didn't I just bring her home from the hospital? Time certainly flies when you're having fun. Just gotta drop the forms in the mail today and she's all good to go!
Grace has slept in my bed for a few months now and I'm not sure how that happened. After our vacation in August she had done real good with sleeping in her bed once we took it out of the crib, so I'm going and buying a new bed today. A nice little toddler bed, which I'll add some fancy decorative stuff to and buy some new sheets and blanket for it and I'll hopefully get her out of my bed so it can be our own again.
I just had another set of scans done and it's still clean so I'm that much closer to 2 years in remission! That makes me super excited! Not that I expected Nything other than clean scans, I didn't get anxious about this set at all, so that tells me I'm reclaiming my body and started to know it again. It also helps that I've been pain free for a few months!
I started updating all the picture frames in the house with newer photos. Last time I did that was just after she turned a year, and now we are closing in on her third birthday!! Some frames had pictures from 18 months and 2 years, but really she has changed so much in 6 months that it was beyond time to update.
My brother and his wife had their baby girl on February 18, she's so adorable and cute! I'm so happy for them :-)
Be well all...
Grace has slept in my bed for a few months now and I'm not sure how that happened. After our vacation in August she had done real good with sleeping in her bed once we took it out of the crib, so I'm going and buying a new bed today. A nice little toddler bed, which I'll add some fancy decorative stuff to and buy some new sheets and blanket for it and I'll hopefully get her out of my bed so it can be our own again.
I just had another set of scans done and it's still clean so I'm that much closer to 2 years in remission! That makes me super excited! Not that I expected Nything other than clean scans, I didn't get anxious about this set at all, so that tells me I'm reclaiming my body and started to know it again. It also helps that I've been pain free for a few months!
I started updating all the picture frames in the house with newer photos. Last time I did that was just after she turned a year, and now we are closing in on her third birthday!! Some frames had pictures from 18 months and 2 years, but really she has changed so much in 6 months that it was beyond time to update.
My brother and his wife had their baby girl on February 18, she's so adorable and cute! I'm so happy for them :-)
Be well all...
Tuesday, January 24, 2012
Humor, shopping and love :-)
My two year old is so funny. She barricades doors so no one can open them, locking people out or herself in the bathroom. How she spins around in circles until she's dizzy. Today she went out on the porch with her Nana and when Nana came in Grace quickly shut the door and leaned against it so no one could come out and get her. Then when I bring her in a few seconds later she stands there in front of me and screams "it's all your fault!" storms off to her Nana's room and leans against that door also! Needless to say she ended up in time out for those two plus locking herself in the bathroom just before all that. Surprisingly there wasn't much screaming like usual.
She also graduated from munchkins today to a full fledged donut. Now don't laugh when I say this, but the DUNKIN DONUTS we went to didn't have chocolate and honey dip munchkins, just plain and jelly, so we got her a chocolate donut. She loved it, I'm not sure she will go back to munchkins now, but that's okay, one donut is cheaper than a box of munchkins, so really I win lol.
The resale shop I go to for clothes for Grace is closing soon, so I went and got a bunch of stuff for Grace, and my nephew who is due to arrive in May. I would have bought for my nieces as well but Olivia has a ton from what I've heard and I think Haylee has a ton as well from the baby shower Gregg and Michele just had.
Grace slept in her bed last night for the first time in forever and I actually missed her. I wasn't sure how to sleep without her next to me, I like co-sleeping with my child really. Plus research has shown that "Co-sleeping children grow up with a higher self-esteem, less anxiety, become independent sooner, are better behaved in school and are more comfortable with affection. They also have less psychiatric problems." So it looks like its not ALL bad. And really I like having her nearby. I told Scott we have to get a twin bed and put it right next to our bed so that there will be more than enough room for all of us, plus when she is ready to sleep on her own, we will have a bed for her. But tonight she is in my bed again, all snuggled up and sound asleep. Where I'll be heading soon I'm sure!
Be well...
She also graduated from munchkins today to a full fledged donut. Now don't laugh when I say this, but the DUNKIN DONUTS we went to didn't have chocolate and honey dip munchkins, just plain and jelly, so we got her a chocolate donut. She loved it, I'm not sure she will go back to munchkins now, but that's okay, one donut is cheaper than a box of munchkins, so really I win lol.
The resale shop I go to for clothes for Grace is closing soon, so I went and got a bunch of stuff for Grace, and my nephew who is due to arrive in May. I would have bought for my nieces as well but Olivia has a ton from what I've heard and I think Haylee has a ton as well from the baby shower Gregg and Michele just had.
Grace slept in her bed last night for the first time in forever and I actually missed her. I wasn't sure how to sleep without her next to me, I like co-sleeping with my child really. Plus research has shown that "Co-sleeping children grow up with a higher self-esteem, less anxiety, become independent sooner, are better behaved in school and are more comfortable with affection. They also have less psychiatric problems." So it looks like its not ALL bad. And really I like having her nearby. I told Scott we have to get a twin bed and put it right next to our bed so that there will be more than enough room for all of us, plus when she is ready to sleep on her own, we will have a bed for her. But tonight she is in my bed again, all snuggled up and sound asleep. Where I'll be heading soon I'm sure!
Be well...
Thursday, January 19, 2012
Even on my weakest day...
As I end the day with a bath for my little one, I can't help but think how lucky I am to have all that I do! I'm so blessed to have the amazing family I do, all the love and support that has surrounded me when I needed it most, and the encouragement when I didn't know where else to find it.
We celebrated Christmas with family like usual, and Grace got more gifts than I knew what to do with! But it's all put in its place and I've reclaimed my living room again. Well somewhat reclaimed, I still have Christmas decorations to pack away lol.
I have been off all pain management meds since just before the new year started and I've had no pain since! I've got more energy than I did and I'm feeling more like myself again.
I sunk into a horrible pit of depression just before Thanksgiving and I had a horrible time getting out of it. My psychiatrist put me on an anti depressant and boy has it helped. And he good part is, I haven't gone to the opposite end of the bipolar spectrum yet so bonus! I'm hoping to go back to writing more now that I'm out of that pit. It was awful! I was sleeping all the time, and I'd cry over every last thing that went on! Hell nothing had to happen and I'd cry, over my hair, my nails, anything. But I sought help when I needed it and am feeling much better.
Grace continues to grow and thrive every day. She's sweet and gentle, yet spunky and fresh all in the same breath. She is so smart and continues to amaze me with all she knows and remembers! I just can't get enough of her. Tonight while putting her to bed she snuggled up close, kissed me a dozen times, hugged me real tight for 5 whole minutes, and then laid her head on my pillow and fell fast asleep right there next to me. It was a little slice of heaven right here on earth. I am really so proud of my girl and can't believe just how big she is now! She's 2 and a half years old now and I really can't figure out where all the time has gone.
Be well all...
We celebrated Christmas with family like usual, and Grace got more gifts than I knew what to do with! But it's all put in its place and I've reclaimed my living room again. Well somewhat reclaimed, I still have Christmas decorations to pack away lol.
I have been off all pain management meds since just before the new year started and I've had no pain since! I've got more energy than I did and I'm feeling more like myself again.
I sunk into a horrible pit of depression just before Thanksgiving and I had a horrible time getting out of it. My psychiatrist put me on an anti depressant and boy has it helped. And he good part is, I haven't gone to the opposite end of the bipolar spectrum yet so bonus! I'm hoping to go back to writing more now that I'm out of that pit. It was awful! I was sleeping all the time, and I'd cry over every last thing that went on! Hell nothing had to happen and I'd cry, over my hair, my nails, anything. But I sought help when I needed it and am feeling much better.
Grace continues to grow and thrive every day. She's sweet and gentle, yet spunky and fresh all in the same breath. She is so smart and continues to amaze me with all she knows and remembers! I just can't get enough of her. Tonight while putting her to bed she snuggled up close, kissed me a dozen times, hugged me real tight for 5 whole minutes, and then laid her head on my pillow and fell fast asleep right there next to me. It was a little slice of heaven right here on earth. I am really so proud of my girl and can't believe just how big she is now! She's 2 and a half years old now and I really can't figure out where all the time has gone.
Be well all...
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