This whole weekend was rough for me. On Saturday after I wrote here, I somehow got worse. Once I start to get into a funk like that, its hard to get out of it. I was a mess.
Jim hasn't slept more than 4 hours a night for weeks, so he's at his end too. He has nothing left at night... when it really starts to hit me hardest. Not a good combo.
After the doctor appointment on Friday, then then anticipation of the next appointment on Monday with the medical oncologist to find out about chemo... it was just too much for me to handle. At one point on Saturday night, in the middle of one of the hysterical fits I had, my boots and jacket were on as I was sobbing. Not sure where I was planning on going, but I just wanted to leave.
Sunday I held it together, but was still down and Jim was still tired. We had a Sunday dinner at his parent's house for his cousin's daughter's birthday. It was nice to see his family and they are all great. We were both edgy on the ride home and barely spoke.
By the time we were home, I was starting to snap again. And Sunday night got even worse. Poor Rocco didn't know what to do. Me deciding to move out to the sofa trying to sleep but sobbing, and Jim in bed, with me yelling at him between my sobs.
I ended up calling the American Cancer Society around 11 or 11:30 that night. I didn't want to bother Jim, and wanted to him sleep so I went into the office at the back of the house. Rocco came running after me and sat on the futon snuggled up against me. I swear he knows whenever something is up.
After the call, I calmed down a little and ended up sleeping back there. It wasn't a good night.
In my mind, I kept thinking that I can't keep doing this to Jim. I can't keep losing it like this and freaking out and having my meltdowns. Granted, they are fewer and far between now (minus two days in a row over the weekend!), but still... I can't do this to him and expect him to pick up the pieces of me after each meltdown.
When I get into that dark place, my mind starts spiraling out of control. I wanted to move, to leave Jim and not do this to him anymore. I was so scared, so overwhelmed with everything. I hated what I was doing to him, but didn't know how to stop. My fear of it all was just crippling.
The only thing I kept saying was, "I can't do this. I can't do this." Over and over and over again.
The this? All of it. Chemo. cancer. Fight. Get sick. Lose my hair. Be scared. Have meltdowns. All of it. I kept thinking of it all and what I don't know if I can do.
Sunday night, I had no fight in me. None. I have not been in such a dark place since the day I got the call with the diagnosis. Sunday night was so bad for me. I felt so alone, so scared. Overwhelmed. Defeated. Done. And if it was a race, if it was a deciding point or decision time, or any make or break moment, I broke. Sunday night, I gave up.
It wasn't a good night for me at all.
Rocco snuggled up with me all night, using my leg as a pillow on the futon. He's been by my side since he got home on Saturday morning. I missed him! But he does know that something is going on with me. I know he knows. He is different with me.
I'm still afraid that I'm overwhelming Jim with my drama and my shit. He's trying so hard. His work is out of control busy and he's trying to land more work so guys don't need to get laid off. Last night he was working until 3am! I try to give him space and let him have what he needs for himself.
Yesterday was better than the weekend. I was still scared about going to the doctor for Monday's appointment. She said I'm doing well and healing well and wants me to start chemo as soon as possible. My next follow-up appointment with the plastic surgeon is on Friday, February 8th. She wants to wait for that to start chemo.
So... I have a date. I start chemo on Tuesday, February 12th. Two weeks from today. I'm freaking out. I'm terrified. I already told Jim, the weekend before chemo, I will be SO much worse than I was this past weekend. I want him to be prepared and know what's coming.
Two weeks from today I start chemo. WTF! That just freaks me out so much. It is really real now. Surgery was a one time thing. I went in, had my boobs ripped open, stitched up and now I'm healing. Chemo? That's for 4 friggin months! And the list of possible side effects is huge! I'm scared.
I'll be doing AC-T for a total of 8 treatments. The first 4 are 2 drugs (the "AC" part) followed by Taxol for the 2nd 4. I'll always go on Tuesday mornings, every 14 days. Twice each month for February, March, April and May.
My hair will fall out by the end of February. That one is killing me. I asked the doctor how long I'll feel like crap. She said typically people begin to start to feel like themselves again after 12-14 days, just when they are due for another treatment. Joy. She said that I'd feel crappy for 3-5 days after the treatment. Wonderful.
So chemo on Tuesday, feel like crap on Wednesday when I go back for a shot to boost my immune system. The shot can cause bone aches. Still feel like crap Thursday and Friday. Then maybe the weekend into the early part of the following week. WONDERFUL!
Jim is going to take me to my first chemo appointment. I was sitting in an infusion room yesterday talking to the charge nurse. She gave me the flu shot there and was checking out my veins on my right arm (she thinks they look okay so I won't need a port inserted in me which I do NOT want to get). While I was waiting for her to get the flu shot ready, I was almost in tears thinking about starting there in 2 weeks for chemo. I just kept saying to Jim, "15 days!" Wow. Now its 14. :(
I'm still trying to wrap my head around everything and it isn't easy. Surgery was one thing. I prepped for it. Got the house ready, bought everything I needed. Had friends lined up to sit with me after I got home. I was ready. I was good. I'm recovering great and no one can believe I had a bilateral mastectomy less than 3 weeks ago! I prepared as best I could to be ready.
I don't have any preparing to do for chemo. I just wait. And wait. I'm still recovering from surgery. I can't work. I can't lift anything. I can't exercise. I can't take the dog for a walk. I don't want to go shopping and I hate daytime tv! I'm bored out of my mind and all I can think about is starting chemo. And it SUCKS.
I'm trying to find things to do and ways to occupy my time. Not easy when other people have jobs and lives.
After I saw the doctor yesterday I popped next door to the hospital to visit with a friend who's dad was there. Her mom passed away 3 weeks ago. A few hours after I left, her dad passed away too. That just sucks. Three weeks to the day she lost both her mom and dad.
Last night was tough. I was spent and trying not to melt down while Jim needed to work and get things done. It wasn't easy.
Today, my friend Pam came over for a bit to visit. It was really nice to see her and to have the company. She brought down really beautiful and super colorful flowers! Love them! (purple, pink, blue and yellow!)
Rocco loved Pam too. It was so cute. He was literally sitting on her lap. We pulled up the "puppy-cam" (explore.org for Misty's Pups- Nursery Cam) to see the puppies and Rocco was going crazy watching doggie tv.
Kind of funny, cuz I still have it up on the big screen TV and Rocco is laying on the sofa with me staring at the TV watching the puppies now. SO funny!!
I think the rest of my week will be busy too, which is nice. Tomorrow I'm going to a support group first, then stopping at my office to say hi, since it is less than a mile away. I haven't seen anyone since before my surgery, so it will be nice to say hello.
Thursday morning I have a follow up appointment with the surgical oncologist, then I'm seeing the social worker after that. Jim will go with me to see the oncologist, but he'll go to work from there. The final visit from the visiting nurses will be after that in the afternoon.
Friday night I'm looking forward to. My friend Carrie is in the Hingham Cabaret, which I have gone to see for a few years. Each year our group seems to grow. Two years ago there were 6 of us to see Carrie in the show. Last year Carrie and Laura were in it and 7 of us went. This year? Carrie's in it again and 10 of us are all going! It should really be a good time. I'm looking forward to seeing all of the girls there. And hopefully a night out will be good for me.
I know I need to take things day by day. Sometimes that isn't that hard, other times it is impossible. ALL of this just becomes so overwhelming. Once I spiral, I keep going out of control. I hate being like that. I hate feeling like that.
The biggest thing for me right now is my own confidence. I lost it. I used to feel good about myself and who I was. I'm not the same person as I was 6 months ago. Too many things have happened and I have changed. And my looks have changed. Long straight blond hair? Short purple hair! And in a month, completely bald. I've gained weight, lost muscle. I feel fat, bloated and ugly. I'm not happy with myself right now and I can't do much to change things.
It sucks. All of it sucks. cancer sucks. It isn't fair.
Sometimes I still feel so disconnected from it all. But I don't have my "to do" list anymore. There isn't more for me to take care of. I'm just going through the motions for each day. That's it.
I guess I lost a purpose. I have nothing I'm doing other than dealing with cancer. And this isn't want I want to be doing. This isn't how I want to spend my time. I didn't sign up for this. But I can't walk away and I can't get away from it. This is now my life. My new life.
I am SO grateful for the incredible amount of support I have. People have been AMAZING. Family is great, friends, people I haven't seen in 20 years from hs! It's crazy! I get cards and mail every day. I love the messages, cards, texts, calls.
PLEASE keep all of that coming! PLEASE! I need that. Days like the past few, when I'm overwhelmed and then anti-social, I don't reply or respond or answer anyone. But I see the messages and I'm touched by the support. I need that now more than ever.
Things are only going to get harder once chemo starts. I'm going to be tired, drained, and feel sick. the side effects are so common on this type of chemo. It is not going to be easy. I'm trying to be a realist and mentally prepare for what's next. That isn't easy either.
Thank you again to everyone I have around me supporting me! It just means SO much to me. With your help, maybe I can find the confidence I had once upon a time. Maybe I can find the strength that people swear I have.
Tuesday, January 29, 2013
Saturday, January 26, 2013
Not a Good Day
Some days are better than others for everyone. In this wonderful journey, it can sometimes even be moment to moment.
I have tried really hard to be positive and to stay positive. I know that others take their lead from me. When I'm feeling good, acting positive, others feed off of that and act positive around me. It makes everything good, fun and easy. Normal. I miss normal being easy. Not being an act.
Most days I feel fake. I'm acting. I can put it that positive face most days for other people. I can smile. I can be positive. I can play the "happy" role. Maybe that's why so many people think I'm so positive or strong. They all see me like that, playing that role. With the smile pasted on my face. I've done it so long, sometimes I actually believe it myself.
I remember back in high school, Ms. Deacon taught most of the business classes. I think I had her for 3 or 4 classes. One thing I remember her saying all the time was, "Fake it 'til ya make it." I guess that link stuck.
I've been faking it. When I say I wish I was half as strong as people think I am, I mean it. I really wish I was! I'm not that strong. I don't understand where it comes from when people see strength in me. Or when people tell me how positive I am.
Come see me at night. Come see me when the sun goes down. Come see me when I can't get dressed without help. When Jim has to clean the incisions aka the 4 inch scars across my chest. Come see me when I have tears streaming down my face waiting for him to finish before he helps me get dressed again.
Come see me on a day like today.
Today should have been a good day. It should have been. It hasn't been. Not at all. Maybe I'm just tired. Maybe I don't have energy. Maybe I'm sick of faking it and not making it for real. Whatever it is, today is not a good day. Not at all.
Last night my friends came over for our "viewing party" to see the pictures of us from 3 weeks ago. They all looked so good. Some shots of each of them really captured their personalities. They all looked beautiful in their pictures.
I felt fake looking at my pictures. Like it was all an act, a bad act. The egg retrieval was the day before. I can see my belly and chest, the chest I no longer have, swollen from the drugs. I can see the bruises on my legs from where Jim injected the hormones every day. I can see me acting, trying to fake it 'til I make it, and failing.
When other people can't see through it, I can. I can see through the act. In the pictures, I can see the bad acting job. I see me failing. Trying to paint a look on my face that I don't believe, that isn't real.
I just don't feel like me anymore. I'm not who I used to be. I don't look like who I was. My hair is short and purple. That's not me. I have long straight blond hair. I had. I had long straight blond hair. I don't anymore. Now I have short purple hair.
Now I have a chest I can't feel. When Jim cleans the incisions, I have to look away. I can't watch him touching my chest when I feel nothing. If I don't watch, I don't know when he's touching me or when he's not. I have to look away. I don't want to know when he is putting the ointment on the 4 inch scars in the middle of each chest that used to have nipples.
I used to exercise when I was stressed out. I used to go to kickboxing and beat the shit out of the bags. I was known as "the Julie with the kicks". I haven't been to kickboxing in months. I haven't done more than a short walk in months. I don't exercise anymore. I have gained weight and lost muscle. I feel like a fat blob. Not only do I not have my hair or my breasts or nipples, I don't have my muscles or my physical strength anymore. I'm flabby and fat. And I just feel ugly.
I feel so ugly now. So defective and repulsive. I can't move without my chest hurting from the expanders under my muscles and the incision under my right arm from where all the lymph nodes were taken.
The surgical bras that they gave me at the hospital are so uncomfortable and bulky. I hate them. I have to wear on 24/7. The only time it has come completely off was when I put on another one or tried to shower.
Post mastectomy bras are expensive. I brought a sports bra with me to the plastic surgeon yesterday but she said I need one that not only does not have an under wire, it can't have the band where the under wire could be. The sports bras I have all have that, or they are over the head and I can't raise my arms.
On my way home from getting an oil change today, my first day driving, I stopped at Walmart to see what they had. Looking at their sports bras, and seeing the kind I could get but not seeing it in my size was enough to start to get me choked up. All I could think was, "Please God, do not let me lose it here in Walmart!"
The woman from the dressing room area was so nice. I asked her if there were more out back (no) but she said there were other kinds in other areas that sounded like what I was describing. I said, even if you have any post mastectomy bras". She showed me exactly what I was looking for. A $7.99 Hanes ugly ass front closure nasty thing that was exactly what I need to wear. I bought two.
She was so nice, asking me how I was doing. Her aunt is a survivor. I told her my surgery was 2 weeks ago and it was my first day being allowed to drive again. I said that the surgical bras were horrible and I wanted to get more than the 2 of those I had.
I put on my fake smile with the fake positive attitude. I thanked her for all of her help. She told me I needed to come back and let her know how I was doing. Her help was another thing that almost made me lose it today in Walmart.
Jim was busy trying to get things done today. His dad brought Rocco home. We missed him so much. I swear Rocco knows what is going on with me. He hasn't left my side much of the day.
When Jim was out and I went to the bathroom, Rocco got off the other end of the sofa when I got up. He followed me into the bathroom. He sat down right in front of me and sat there waiting for me. After I washed my hands, he walked back to the living room with me and got back up on the other side of the sofa and both of us fell back to sleep. I missed my buddy.
While Jim was doing a few things around the house and in and out with the errands he had to do, his mind has been elsewhere. He saw my tears when he was cleaning the dressings on my chest. He knows I have no feeling there. He helped me try on the bras that I bought at Walmart, since I can't put them up on my shoulders. He told me I look beautiful. I don't believe him.
All day I have been an emotional mess. I feel defective. I'm an impostor. I'm not me. I'm going through the motions each day. I put the smile on and play the part. I act like I'm happy and positive, smiling and laughing. Once and a while I forget. Once and a while its real. Once and a while I am me again. Not all the time. Not today. I haven't forgotten once today. I can barely play the part of the fake positive happy smiling cancer patient today. Today I'm who I have become. An emotional mess, defective, raw, crying, fat, ugly blob with purple hair. Today I'm the me I have really become. Today I'm the me that I hide from everyone. Today I am being real. And today fucking sucks!
I hate being like this. I hate being an emotional mess. My face hurts from the tears. I have a headache from crying all day. I can't breathe through my nose because I'm so congested from crying for hours. But I can't stop.
And then Jim will tell me he loves me. That I'm beautiful and that I look fabulous. That makes me cry more. I don't believe him. I don't look fabulous. I'm not beautiful. And sometimes I think he's only with me because he is a nice guy. His girlfriend moved in with him and now has cancer. He can't end it now. So he's stuck with me. He's stuck with an emotional mess, fat, ugly cancer patient for a girlfriend.
He takes me to all the doctor appointments. He sits through everything with all the oncologists and the plastic surgeon. He has missed so much work and even more sleep. My shit, my cancer, is impacting HIS life. Its messing with his job, his career. That's not right. He's a good guy. He doesn't deserve that. He doesn't deserve to have my shit fuck up his life.
So many times I think I made a mistake by moving in with him. I couldn't have taken care of myself after surgery, living on my own, but it isn't fair to him that he has had to be my caregiver. He's supposed to have a girlfriend, not what he got. Not this. Not me.
He tells me not to worry about him or his job. He says he's fine. He's not worried about him or his job and that means that I shouldn't be worried about it either. But I am. I don't want this to be too much for him. And I feel like I am.
I feel like I'm a burden. I feel like everyone feels bad for me and has so much pity for me.
The day of surgery, when we were in the parking lot of the hospital, I asked Jim if we could go away, right then. I wanted to drive far far away and get away from all of this. I still do. I want to run away. Run far far away from my life. From cancer. I don't want this. I don't want to go through this. I don't want to put my shit on other people and to have my shit fuck up the lives of people I care about.
I don't want to get sick. I don't want to go through chemo or radiation. I am so scared of starting that. I'm afraid of what side effects I'll have and how sick I'll get.
Nothing during this whole fucking mess has gone well. The lump that was probably nothing, wasn't. The biopsy that would be fine, wasn't. The fertility preservation didn't go wonderfully. The insurance company gave me shit. The IUD fucking KILLED, the two times I had to deal with that. The "most likely nothing in the lymph nodes" was wrong when surgery happened. The one lump ended up being 3 separate areas in the same breast.
What the fuck will chemo be like? How many side effects will I have to deal with? How bad is it really going suck?
How fast will I become a "sick person"?
And what happened to my acting ability today? Why can't I put on the happy, smiling, positive face and fake it 'til I make it?
Why can't be the old me? The me with long straight blond hair who goes to kickboxing a few nights a week and kicks the crap out of the bag? Who smiles for real? Who can dress herself and shower? Who has feeling on all of her body? Why can't I be the old me who doesn't have cancer?
I have tried really hard to be positive and to stay positive. I know that others take their lead from me. When I'm feeling good, acting positive, others feed off of that and act positive around me. It makes everything good, fun and easy. Normal. I miss normal being easy. Not being an act.
Most days I feel fake. I'm acting. I can put it that positive face most days for other people. I can smile. I can be positive. I can play the "happy" role. Maybe that's why so many people think I'm so positive or strong. They all see me like that, playing that role. With the smile pasted on my face. I've done it so long, sometimes I actually believe it myself.
I remember back in high school, Ms. Deacon taught most of the business classes. I think I had her for 3 or 4 classes. One thing I remember her saying all the time was, "Fake it 'til ya make it." I guess that link stuck.
I've been faking it. When I say I wish I was half as strong as people think I am, I mean it. I really wish I was! I'm not that strong. I don't understand where it comes from when people see strength in me. Or when people tell me how positive I am.
Come see me at night. Come see me when the sun goes down. Come see me when I can't get dressed without help. When Jim has to clean the incisions aka the 4 inch scars across my chest. Come see me when I have tears streaming down my face waiting for him to finish before he helps me get dressed again.
Come see me on a day like today.
Today should have been a good day. It should have been. It hasn't been. Not at all. Maybe I'm just tired. Maybe I don't have energy. Maybe I'm sick of faking it and not making it for real. Whatever it is, today is not a good day. Not at all.
Last night my friends came over for our "viewing party" to see the pictures of us from 3 weeks ago. They all looked so good. Some shots of each of them really captured their personalities. They all looked beautiful in their pictures.
I felt fake looking at my pictures. Like it was all an act, a bad act. The egg retrieval was the day before. I can see my belly and chest, the chest I no longer have, swollen from the drugs. I can see the bruises on my legs from where Jim injected the hormones every day. I can see me acting, trying to fake it 'til I make it, and failing.
When other people can't see through it, I can. I can see through the act. In the pictures, I can see the bad acting job. I see me failing. Trying to paint a look on my face that I don't believe, that isn't real.
I just don't feel like me anymore. I'm not who I used to be. I don't look like who I was. My hair is short and purple. That's not me. I have long straight blond hair. I had. I had long straight blond hair. I don't anymore. Now I have short purple hair.
Now I have a chest I can't feel. When Jim cleans the incisions, I have to look away. I can't watch him touching my chest when I feel nothing. If I don't watch, I don't know when he's touching me or when he's not. I have to look away. I don't want to know when he is putting the ointment on the 4 inch scars in the middle of each chest that used to have nipples.
I used to exercise when I was stressed out. I used to go to kickboxing and beat the shit out of the bags. I was known as "the Julie with the kicks". I haven't been to kickboxing in months. I haven't done more than a short walk in months. I don't exercise anymore. I have gained weight and lost muscle. I feel like a fat blob. Not only do I not have my hair or my breasts or nipples, I don't have my muscles or my physical strength anymore. I'm flabby and fat. And I just feel ugly.
I feel so ugly now. So defective and repulsive. I can't move without my chest hurting from the expanders under my muscles and the incision under my right arm from where all the lymph nodes were taken.
The surgical bras that they gave me at the hospital are so uncomfortable and bulky. I hate them. I have to wear on 24/7. The only time it has come completely off was when I put on another one or tried to shower.
Post mastectomy bras are expensive. I brought a sports bra with me to the plastic surgeon yesterday but she said I need one that not only does not have an under wire, it can't have the band where the under wire could be. The sports bras I have all have that, or they are over the head and I can't raise my arms.
On my way home from getting an oil change today, my first day driving, I stopped at Walmart to see what they had. Looking at their sports bras, and seeing the kind I could get but not seeing it in my size was enough to start to get me choked up. All I could think was, "Please God, do not let me lose it here in Walmart!"
The woman from the dressing room area was so nice. I asked her if there were more out back (no) but she said there were other kinds in other areas that sounded like what I was describing. I said, even if you have any post mastectomy bras". She showed me exactly what I was looking for. A $7.99 Hanes ugly ass front closure nasty thing that was exactly what I need to wear. I bought two.
She was so nice, asking me how I was doing. Her aunt is a survivor. I told her my surgery was 2 weeks ago and it was my first day being allowed to drive again. I said that the surgical bras were horrible and I wanted to get more than the 2 of those I had.
I put on my fake smile with the fake positive attitude. I thanked her for all of her help. She told me I needed to come back and let her know how I was doing. Her help was another thing that almost made me lose it today in Walmart.
Jim was busy trying to get things done today. His dad brought Rocco home. We missed him so much. I swear Rocco knows what is going on with me. He hasn't left my side much of the day.
When Jim was out and I went to the bathroom, Rocco got off the other end of the sofa when I got up. He followed me into the bathroom. He sat down right in front of me and sat there waiting for me. After I washed my hands, he walked back to the living room with me and got back up on the other side of the sofa and both of us fell back to sleep. I missed my buddy.
While Jim was doing a few things around the house and in and out with the errands he had to do, his mind has been elsewhere. He saw my tears when he was cleaning the dressings on my chest. He knows I have no feeling there. He helped me try on the bras that I bought at Walmart, since I can't put them up on my shoulders. He told me I look beautiful. I don't believe him.
All day I have been an emotional mess. I feel defective. I'm an impostor. I'm not me. I'm going through the motions each day. I put the smile on and play the part. I act like I'm happy and positive, smiling and laughing. Once and a while I forget. Once and a while its real. Once and a while I am me again. Not all the time. Not today. I haven't forgotten once today. I can barely play the part of the fake positive happy smiling cancer patient today. Today I'm who I have become. An emotional mess, defective, raw, crying, fat, ugly blob with purple hair. Today I'm the me I have really become. Today I'm the me that I hide from everyone. Today I am being real. And today fucking sucks!
I hate being like this. I hate being an emotional mess. My face hurts from the tears. I have a headache from crying all day. I can't breathe through my nose because I'm so congested from crying for hours. But I can't stop.
And then Jim will tell me he loves me. That I'm beautiful and that I look fabulous. That makes me cry more. I don't believe him. I don't look fabulous. I'm not beautiful. And sometimes I think he's only with me because he is a nice guy. His girlfriend moved in with him and now has cancer. He can't end it now. So he's stuck with me. He's stuck with an emotional mess, fat, ugly cancer patient for a girlfriend.
He takes me to all the doctor appointments. He sits through everything with all the oncologists and the plastic surgeon. He has missed so much work and even more sleep. My shit, my cancer, is impacting HIS life. Its messing with his job, his career. That's not right. He's a good guy. He doesn't deserve that. He doesn't deserve to have my shit fuck up his life.
So many times I think I made a mistake by moving in with him. I couldn't have taken care of myself after surgery, living on my own, but it isn't fair to him that he has had to be my caregiver. He's supposed to have a girlfriend, not what he got. Not this. Not me.
He tells me not to worry about him or his job. He says he's fine. He's not worried about him or his job and that means that I shouldn't be worried about it either. But I am. I don't want this to be too much for him. And I feel like I am.
I feel like I'm a burden. I feel like everyone feels bad for me and has so much pity for me.
The day of surgery, when we were in the parking lot of the hospital, I asked Jim if we could go away, right then. I wanted to drive far far away and get away from all of this. I still do. I want to run away. Run far far away from my life. From cancer. I don't want this. I don't want to go through this. I don't want to put my shit on other people and to have my shit fuck up the lives of people I care about.
I don't want to get sick. I don't want to go through chemo or radiation. I am so scared of starting that. I'm afraid of what side effects I'll have and how sick I'll get.
Nothing during this whole fucking mess has gone well. The lump that was probably nothing, wasn't. The biopsy that would be fine, wasn't. The fertility preservation didn't go wonderfully. The insurance company gave me shit. The IUD fucking KILLED, the two times I had to deal with that. The "most likely nothing in the lymph nodes" was wrong when surgery happened. The one lump ended up being 3 separate areas in the same breast.
What the fuck will chemo be like? How many side effects will I have to deal with? How bad is it really going suck?
How fast will I become a "sick person"?
And what happened to my acting ability today? Why can't I put on the happy, smiling, positive face and fake it 'til I make it?
Why can't be the old me? The me with long straight blond hair who goes to kickboxing a few nights a week and kicks the crap out of the bag? Who smiles for real? Who can dress herself and shower? Who has feeling on all of her body? Why can't I be the old me who doesn't have cancer?
Friday, January 25, 2013
Progress
One of the things I just didn't expect was how tired I would be after surgery. Those first few days, I wasn't awake more than 2 hours at a time. I got better and wasn't even napping at all. Until yesterday.
Wednesday I was out for 3 appointments in a row. Dad picked me up and dropped me off at the building where the first 2 were. Then after that, my friend Laura picked me up there and drove me over to the dentist for that appointment. They were nice enough to squeeze me in. I can't get my teeth worked on during chemo and I had already canceled my last appointment in December because life was so crazy.
Jim picked me up at the dentist after he got out of work. Wednesday night we were both tired and just stayed in instead of going to a workshop at the cancer community center. That night, I slept great. Got about 7 or 8 hours of sleep.
Yesterday? COMPLETELY EXHAUSTED! I ended up taking a 3 1/2 hour nap! I slept from 10:30 until 2pm. WOW! Guess being out and about for a few hours was a little more than I'm used to.
Last night was good with family coming down to visit for a bit. But I was pretty tired when they left, even after the long nap. I think I was asleep before 10pm and up at 6am. And I have been tired ALL day!
Some good news today. Jim took me in for my followup with my plastic surgeon who is handling my recovery. LOVE her, but she's super conservative. Luckily she ended up removing the 3 remain drains. YAY!! Finally! She said I could take a shower tomorrow. THANK GOD! I'm sick of the little half shower from the waist down with the hand held shower head.
The good news from that appointment... even the doctor said, "You do not look like you just had surgery 2 weeks ago!" So that made me feel good. She sees that I'm recovering quickly.
I also got a "fill" today. She found the ports for the expanders, inserted a butterfly needle and added some saline to each side. I know that I still have a little swelling from the surgery and all, but I feel like I'm bigger now than I was before surgery.
Right now I'm a little sore. Even though I had backed off of the pain meds, I'm feeling a little uncomfortable now. I can feel where they were filled. If I move my arm, I can feel the expanders moving under my chest muscles. It doesn't hurt, but its just a weird uncomfortable, sore feeling.
After I was home from the doctor, it was cool to hang out with my friend Melanie again. She came over with her daughter Aly and the 3 of us went out for lunch. I love hanging out with Mel and it was nice to sort of get to know Aly a bit this week. I used to see Mel ALL the time when I lived in Dracut and Derry, but once I moved south of Boston, it was harder for us to get together. I saw her son Ry all the time when he was younger, but didn't really see Aly ever. She barely remembers meeting me before Monday!
I loved it when Mel told me Aly couldn't wait to come down and visit again and that she loved hanging out with me. She wanted to stay over and not go home. :) I like that age (9) cuz they are old enough to really have their own personality and understand a lot but still young enough for not too much attitude.
Now I'm cooked again. Ready to nap.
The girls are coming over tonight for our "viewing" party to see the pictures from the photo shoot 3 weeks ago. I cheated and looked at mine once I got the link, but I haven't looked at their pictures yet. I can't wait until they get here and we can look at them up on the flat screen attached to the computer... a nice 47" to see all our pictures! Toss in the wine, and it will be a fun night!
I got a couple of pictures today of me with the purple hair that I can share. LOVE having purple hair! I like this better than when I just cut it short.
Maybe its because I only cut it short for surgery, for cancer. Going purple, that was for me! This is sort of sticking it to cancer and just saying F you, I'm keeping this on MY terms! And I LOVE the purple! Even though it might only be for a month.
But the color of my hair kind of depends on the lighting I'm around. It looks different inside my house than it does outside. So here's the pics I got today!!!
Wednesday I was out for 3 appointments in a row. Dad picked me up and dropped me off at the building where the first 2 were. Then after that, my friend Laura picked me up there and drove me over to the dentist for that appointment. They were nice enough to squeeze me in. I can't get my teeth worked on during chemo and I had already canceled my last appointment in December because life was so crazy.
Jim picked me up at the dentist after he got out of work. Wednesday night we were both tired and just stayed in instead of going to a workshop at the cancer community center. That night, I slept great. Got about 7 or 8 hours of sleep.
Yesterday? COMPLETELY EXHAUSTED! I ended up taking a 3 1/2 hour nap! I slept from 10:30 until 2pm. WOW! Guess being out and about for a few hours was a little more than I'm used to.
Last night was good with family coming down to visit for a bit. But I was pretty tired when they left, even after the long nap. I think I was asleep before 10pm and up at 6am. And I have been tired ALL day!
Some good news today. Jim took me in for my followup with my plastic surgeon who is handling my recovery. LOVE her, but she's super conservative. Luckily she ended up removing the 3 remain drains. YAY!! Finally! She said I could take a shower tomorrow. THANK GOD! I'm sick of the little half shower from the waist down with the hand held shower head.
The good news from that appointment... even the doctor said, "You do not look like you just had surgery 2 weeks ago!" So that made me feel good. She sees that I'm recovering quickly.
I also got a "fill" today. She found the ports for the expanders, inserted a butterfly needle and added some saline to each side. I know that I still have a little swelling from the surgery and all, but I feel like I'm bigger now than I was before surgery.
Right now I'm a little sore. Even though I had backed off of the pain meds, I'm feeling a little uncomfortable now. I can feel where they were filled. If I move my arm, I can feel the expanders moving under my chest muscles. It doesn't hurt, but its just a weird uncomfortable, sore feeling.
After I was home from the doctor, it was cool to hang out with my friend Melanie again. She came over with her daughter Aly and the 3 of us went out for lunch. I love hanging out with Mel and it was nice to sort of get to know Aly a bit this week. I used to see Mel ALL the time when I lived in Dracut and Derry, but once I moved south of Boston, it was harder for us to get together. I saw her son Ry all the time when he was younger, but didn't really see Aly ever. She barely remembers meeting me before Monday!
I loved it when Mel told me Aly couldn't wait to come down and visit again and that she loved hanging out with me. She wanted to stay over and not go home. :) I like that age (9) cuz they are old enough to really have their own personality and understand a lot but still young enough for not too much attitude.
Now I'm cooked again. Ready to nap.
The girls are coming over tonight for our "viewing" party to see the pictures from the photo shoot 3 weeks ago. I cheated and looked at mine once I got the link, but I haven't looked at their pictures yet. I can't wait until they get here and we can look at them up on the flat screen attached to the computer... a nice 47" to see all our pictures! Toss in the wine, and it will be a fun night!
I got a couple of pictures today of me with the purple hair that I can share. LOVE having purple hair! I like this better than when I just cut it short.
Maybe its because I only cut it short for surgery, for cancer. Going purple, that was for me! This is sort of sticking it to cancer and just saying F you, I'm keeping this on MY terms! And I LOVE the purple! Even though it might only be for a month.
But the color of my hair kind of depends on the lighting I'm around. It looks different inside my house than it does outside. So here's the pics I got today!!!
Me outside of the hospital before the Dr apt.
Aly and me walking to Bertucci's for lunch.
Mel and me inside Bertucci's.
Mel and me just before she was leaving.
Me standing outside in the freezing cold!
Wednesday, January 23, 2013
EARLY!
Before all of this, I had the hardest time waking up every morning. Now? I was awake at 5:45 and got out of bed before 6 am today. I didn't want to wake Jim when he set the alarm for 7am today. (not 7 yet, so he's still in bed)
It doesn't matter now. Every morning I'm awake before an alarm goes off! Damn! At least I'm sleeping through the night for the most part and off the recliner, back in bed (3 nights in a row now!)
After I was up, I turned on my laptop to clear out some email, then moved onto Facebook. There was a link to a blog by 2 different unrelated people. First, expected, Joe Haggerty who is a hockey sports guy that I happened to go to HS with. (Still weird to see him on TV now and again when his parents live up the street from my parents). Then was Maureen Hancock, a Medium who has been on TV several times, including the Ricki Lake Show 2 weeks ago. (medium as in, "I see dead people".) The two of them shared the same link for a blog?
It was to a blog written by Bobby Robins, a Providence Bruins player. I have to share it here. Honestly brought tears to my eyes. Had to stop once to wipe my eyes before I could finish reading it.
http://www.bobbyrobins.com/2/post/2013/01/good-vibrations.html
SO did you read it??
Just think of the power in it. If we all took a moment to genuinely feel the connection we have with others, to feel the impact we could have with others out there and made a CHOICE to be positive, how far reaching could that be? What impacts on the world overall would that make?
Years ago I worked in child care. There was a poem I had on my desk that I am horribly going to try to paraphrase. 100 years from now it will not matter how much money you made, the kind of car you drove, or the house you lived in. But the world may be different because you were important in the life of a child.
Change that up. Not child. Person. Someone. You just made a difference to ONE person.
Think about a bad day. Driving to work, stuck in traffic. You get cranky. The girl at Dunkin messes up your coffee. When you are at work, your cranky, snappy and just not in a good mood. Think about all the people who you come into contact with that get the privilege of your peachy mood.
Think about when you start in a good mood, but it is someone you work with you had that bad morning. How does that impact you when you are around that person? Does it bring you down too? Suck you in? How are you with others after that?
What about the opposite? Things are okay getting to work in the morning, but the girl at the Dunkin window is extra cheerful and happy. You can feel her smile through the speaker when you order. Getting up to the window, everyone inside is smiling and laughing and happy. She really means it when she tells you have a great day.
What if you carried that energy with you all day? How would you interact with those around you? What could you pass on to others?
What do you want your legacy to be?
How's that for a heavy thought before 7am with no coffee? :) I'm still shocked when people tell me how strong they think I am. I don't think I'm strong. I think I'm doing what I have to do, one foot in front of the other. Nothing over the top, nothing that hasn't been done by others far better than me before. I don't think I'm strong.
Then I hear from people in the fitness group I have been involved with for about 4 years now. I have organized 7 different sessions of the Couch to 5K running group and met AMAZING friends through that group. I've pushed myself further than I ever thought possible because of that group. I have gotten so much more from this group than I could ever possibly give.
Sometimes I hear from people in that group about , and I'm so touched by the comments I'm given.
You are an inspiration, glad I met you this year.- Majalia (in September)
You have been an incredible support and positive influence for so many people, you may not even realize it! - Mary
You really are in inspiration to so many- Julie B
You've already been inspiring people for a couple of years with the awesome fitness meetup, so keep it coming girl!!- Lara
So, I want to take Robins' commitment to 5 compliments a day and expand. Just haven't figured it out yet how. I try to stay positive as best I can. I am grateful for the people in my life.
ALL of the comment of support from all of you mean SO much! I need that. I need to hear the support and receive the reminders of who I have around me, supporting for me and helping to pull me through.
It doesn't matter now. Every morning I'm awake before an alarm goes off! Damn! At least I'm sleeping through the night for the most part and off the recliner, back in bed (3 nights in a row now!)
After I was up, I turned on my laptop to clear out some email, then moved onto Facebook. There was a link to a blog by 2 different unrelated people. First, expected, Joe Haggerty who is a hockey sports guy that I happened to go to HS with. (Still weird to see him on TV now and again when his parents live up the street from my parents). Then was Maureen Hancock, a Medium who has been on TV several times, including the Ricki Lake Show 2 weeks ago. (medium as in, "I see dead people".) The two of them shared the same link for a blog?
It was to a blog written by Bobby Robins, a Providence Bruins player. I have to share it here. Honestly brought tears to my eyes. Had to stop once to wipe my eyes before I could finish reading it.
http://www.bobbyrobins.com/2/post/2013/01/good-vibrations.html
SO did you read it??
Just think of the power in it. If we all took a moment to genuinely feel the connection we have with others, to feel the impact we could have with others out there and made a CHOICE to be positive, how far reaching could that be? What impacts on the world overall would that make?
Years ago I worked in child care. There was a poem I had on my desk that I am horribly going to try to paraphrase. 100 years from now it will not matter how much money you made, the kind of car you drove, or the house you lived in. But the world may be different because you were important in the life of a child.
Change that up. Not child. Person. Someone. You just made a difference to ONE person.
Think about a bad day. Driving to work, stuck in traffic. You get cranky. The girl at Dunkin messes up your coffee. When you are at work, your cranky, snappy and just not in a good mood. Think about all the people who you come into contact with that get the privilege of your peachy mood.
Think about when you start in a good mood, but it is someone you work with you had that bad morning. How does that impact you when you are around that person? Does it bring you down too? Suck you in? How are you with others after that?
What about the opposite? Things are okay getting to work in the morning, but the girl at the Dunkin window is extra cheerful and happy. You can feel her smile through the speaker when you order. Getting up to the window, everyone inside is smiling and laughing and happy. She really means it when she tells you have a great day.
What if you carried that energy with you all day? How would you interact with those around you? What could you pass on to others?
What do you want your legacy to be?
How's that for a heavy thought before 7am with no coffee? :) I'm still shocked when people tell me how strong they think I am. I don't think I'm strong. I think I'm doing what I have to do, one foot in front of the other. Nothing over the top, nothing that hasn't been done by others far better than me before. I don't think I'm strong.
Then I hear from people in the fitness group I have been involved with for about 4 years now. I have organized 7 different sessions of the Couch to 5K running group and met AMAZING friends through that group. I've pushed myself further than I ever thought possible because of that group. I have gotten so much more from this group than I could ever possibly give.
Sometimes I hear from people in that group about , and I'm so touched by the comments I'm given.
You are an inspiration, glad I met you this year.- Majalia (in September)
You have been an incredible support and positive influence for so many people, you may not even realize it! - Mary
You really are in inspiration to so many- Julie B
You've already been inspiring people for a couple of years with the awesome fitness meetup, so keep it coming girl!!- Lara
So, I want to take Robins' commitment to 5 compliments a day and expand. Just haven't figured it out yet how. I try to stay positive as best I can. I am grateful for the people in my life.
ALL of the comment of support from all of you mean SO much! I need that. I need to hear the support and receive the reminders of who I have around me, supporting for me and helping to pull me through.
Monday, January 21, 2013
BUSY Week
It has been a very busy week. Considering I'm 11 days out of surgery, out of work on disability leave, I have been REALLY busy. Saturday was my first real day out, with Jim's family. I was exhausted and almost fell asleep on the drive home.
Sunday my friend Jill dropped off some food (which was my lunch today and SO good!) and then 2 of my cousins came over for a while. I haven't seen Lisa in forever and I can't remember the last time the 3 of us got together.
Last week Michelle was here on Tuesday and Wednesday. Had my first appointment with a nurse at the plastic surgeons office on Thursday morning (one drain of 4 removed), then my friend Jen was over while Jim was at work. My parents stopped over that night. LONG day.
Friday Laura hung out here with me. She was yelling at me, like everyone else, because I was doing too much. But I only do what I can do. The more I move around, the stronger I feel and the faster I am healing. I don't push it and won't do what I shouldn't do. But I feel good.
Today, the nurse was a bit late coming over. My friend Melanie was over with her daughter Aly and their 4 pound dog Teddy. Good thing Rocco is still with Jim's parents! Rocco would have thought Teddy was a toy! It was really great to see Mel, been WAY too long. And tonight I just relaxed on the sofa and watched TV.
What else? Jim helps me with whatever I need. He washes my hair in the sink, does the laundry, cooks dinner for me (and even my friend daughter!) He's just been so great, even though I have had a few panic attacks in the past 2 weeks that he has had to deal with.
Friends and family continue to be amazing with all the support. I can't thank everyone enough. Flowers, cookies, meals cooked, pajama-gram, cards, breakfast packages, SO many things. Jen made me a BEAUTIFUL blanket, that I am laying under right now.
Cousin Judy sent me a great journal. She brought it to a family reunion I wasn't at in December and passed it around for people to leave messages for me. It literally brought tears to my eyes!
That made me decide that from now on, anyone who visits has to write me a message in the book. So when I'm miserable and feel like crap when I'm going through chemo, or whenever I'm down, I'll have that book to look at and read all these amazing messages from all of the incredible people I have behind me supporting me and wishing me well.
Today Melanie, as INSANE as she is, brought me a Pandora bracelet with several charms. Three of them were for the Susan G Komen Foundation. Insane... I can't believe she would do that, but SO amazing, beautiful and touching.
Here's a picture of the blanket and journal.
I can't do the dishes. I can't reach the glasses or plates, or anything on the shelves. I can't reach the top shelf of the fridge. I can't put on my shirts or jacket by myself. I can't wash my hair or even take a shower. I can't even half ass it with the hand held shower from the waist down without help.
I can sit on my ass all day. That's what I can do.
And this isn't just for me personally. If you know anyone going through something, an illness themselves or a loved on, or any other challenging time, saying nothing is as if you do not care and have not thought about that person. It is as if whatever that person is going through is not a thought on your mind, like they do not matter at all. Trust me, I know where the crickets are coming from. Off the top of my head, I have 3. Three VERY unexpected and unrelated people, but still shocking to hear the crickets as loud I have heard them.
But, it is ALL out of me. And I am cancer free and hopefully now considered NED.
Anyway.. that's it for today.. I'm tired and its 11:30.
Sunday my friend Jill dropped off some food (which was my lunch today and SO good!) and then 2 of my cousins came over for a while. I haven't seen Lisa in forever and I can't remember the last time the 3 of us got together.
Last week Michelle was here on Tuesday and Wednesday. Had my first appointment with a nurse at the plastic surgeons office on Thursday morning (one drain of 4 removed), then my friend Jen was over while Jim was at work. My parents stopped over that night. LONG day.
Friday Laura hung out here with me. She was yelling at me, like everyone else, because I was doing too much. But I only do what I can do. The more I move around, the stronger I feel and the faster I am healing. I don't push it and won't do what I shouldn't do. But I feel good.
Today, the nurse was a bit late coming over. My friend Melanie was over with her daughter Aly and their 4 pound dog Teddy. Good thing Rocco is still with Jim's parents! Rocco would have thought Teddy was a toy! It was really great to see Mel, been WAY too long. And tonight I just relaxed on the sofa and watched TV.
What else? Jim helps me with whatever I need. He washes my hair in the sink, does the laundry, cooks dinner for me (and even my friend daughter!) He's just been so great, even though I have had a few panic attacks in the past 2 weeks that he has had to deal with.
Friends and family continue to be amazing with all the support. I can't thank everyone enough. Flowers, cookies, meals cooked, pajama-gram, cards, breakfast packages, SO many things. Jen made me a BEAUTIFUL blanket, that I am laying under right now.
Cousin Judy sent me a great journal. She brought it to a family reunion I wasn't at in December and passed it around for people to leave messages for me. It literally brought tears to my eyes!
That made me decide that from now on, anyone who visits has to write me a message in the book. So when I'm miserable and feel like crap when I'm going through chemo, or whenever I'm down, I'll have that book to look at and read all these amazing messages from all of the incredible people I have behind me supporting me and wishing me well.
Today Melanie, as INSANE as she is, brought me a Pandora bracelet with several charms. Three of them were for the Susan G Komen Foundation. Insane... I can't believe she would do that, but SO amazing, beautiful and touching.
Here's a picture of the blanket and journal.
Didn't Jen do an amazing job on the blanket??
For the most part, I am doing okay. I feel good and each day feel better than the last. I'm still detached from everything. I'm still doing what I have to do and crossing things off my to do list. Then all of a sudden, something will happen and it will be like a brick to my face. cancer. WTF.
Little things will set me off. And once it starts, I don't know how to get out of it. In the hospital it was horrible, I was still so sore from surgery and hyperventilating during a panic attack, sobbing. Had another one last Wednesday night too. Poor Jim had to deal with it both times. Over the phone when I was in the hospital and home last week.
Somehow, he can get me out of it. His words, his touch... he can just calm me down and things will be okay.
Maybe that's why I have been having them more frequently since surgery. I can't fall asleep in his arms anymore. Last night was the first night that I didn't sleep on the recliner. But even still, I had to be on my back with my arms elevated. I miss falling asleep with his arms wrapped around me. I miss having his arms wrapped around me, forget about just falling asleep like that!
He's afraid of hurting me. I still have three drains in. He doesn't want to bump them or cause me any other sort of pain. My chest hurts, my arms can't go above my shoulders. I'm still really tight and sore. He doesn't want to hurt me or be responsible for making my recovery more difficult. Intellectually, I understand that. Emotionally? It fucking sucks! I just want have his arms wrapped around me and for him to hold me tight. It sucks.
Another hard part of all of this is not being able to do things for myself. Two weeks ago, I was doing the laundry and cleaning the house to prep for coming home. I can't do laundry now. I can't carry it downstairs. I can't reach the lock to the basement door. I can't reach the power buttons for the washer or for the dryer. I can't transfer the laundry from the wash to the dryer and I can't carry it back upstairs. I can fold it. Most of it. That's it.
I can't do the dishes. I can't reach the glasses or plates, or anything on the shelves. I can't reach the top shelf of the fridge. I can't put on my shirts or jacket by myself. I can't wash my hair or even take a shower. I can't even half ass it with the hand held shower from the waist down without help.
I haven't exercised in months, between my fertility treatments then surgery. I've gained weight, but hard to tell how much with 3 damn drains still in me. Per Jim, yeah, I've gained something since I'm not working out at all and I don't have a six pack anymore, but I'm not fat. Wonderful.
I LOVE exercise. I love working out, working up a sweat and feeling my muscles move. I sound like Heather from kick boxing, but its true, "Feel the Burn, Love the Burn" and I do! I LOVE the burn! I love that next morning when my muscles are sore from really pushing it and working hard. I love seeing the results.
Today I walked to the CVS at the end of the street with Melanie, Aly and 4 pound Teddy. Teddy wanted to walk more when we got back to my house. A four pound dog. Great.
I know I'll get there. I know it will happen. I know it is a tough road and won't be easy and its worth it and I'll beat it and ALL that crap. But I still miss my life. I miss everything I lost.
I miss my independence. I miss the ability to do what I want without needing help. I even miss driving and I hate driving. I miss kickboxing. I miss leaving the house. I miss getting out of bed without needing Jim to put his hands on the middle of my back to push me up. I REALLY miss showering. I miss my life, as crazy as it always was, being "normal". I miss the innocence of really honestly believing that everything will be okay.
I know my surgery was common. I trusted in my surgeons completely. But things happen. This was a major surgery and things could have gone wrong.
Jim was my health care proxy with Dana Farber. The night before surgery, I had to remind him of a conversation we had. My wishes. What it means to be my health care proxy. If something happened when I was in surgery and I was a vegetable without much hope of recovering... pull the plug. Don't keep me attached to a machine forever if me and my mind are already gone.
He said, "baby, you'll be fine. Everything will be fine." But if it wasn't, and there was a risk that it wouldn't go well, he needed to know my wishes and be able to comply with my wishes.
I miss the innocence of really honestly believing that everything will be okay.
Things have changed so much over the past few months. I can already feel that I'm different. Jim says that things haven't changed, but they have. Everything has changed. I have changed. I'm a different person already. My priorities are different. My thoughts are different. My choices are different. My entire life is different.
I keep trying to focus on all of the positives. As much bitching as I'm doing, there really are lots of positives too.
HOLY CRAP do have a HUGE and amazing amount of support in my life. HUGE!! I couldn't do it, couldn't get through all of this, if I didn't have the support I have all around me. The cards are out of control and I LOVE it! Some days I get 3 or 4! :) Even a Happy Birthday card from an old friend I haven't seen in geezes... 15 years! She said that the Get Well cards all end up sounding the same. Made me laugh. (a little uncomfortable when my friend's 9 year old daughter wanted to read the card with the Wennie Dog on it and inside it says, "Don't just stay home and play with your wiener, you've got celebrating to do")
The local florists must hate me for the amount of delivering they have done. Third Edible Arrangement came on Friday. Some days I get 3 or 4 deliveries from people! WOW! It is a little overwhelming to know I have this many people in my corner.
Not many people have this much support. It is crazy! My family is great. My friends are wonderful. Old and new friends. Local south shore friends are doing SO much being so close. And it is amazing how many people have reached out on Facebook. Although I haven't flat out said, "I have breast cancer", if anyone reads my facebook updates or looks at my pictures, its kind of a given.
People I have not seen since graduation, over 20 friggin years ago (that is just WRONG! I am NOT that old!) have reached out. SO many. It really is just touching to hear from everyone and feel the true genuine support.
I do understand that some people don't know what to say to me about the whole cancer thing. Dropping off the face of the earth or saying nothing? Yeah not so much. A "hi, thinking of you" all on its own is SO much better than nothing at all. Trust me.
And this isn't just for me personally. If you know anyone going through something, an illness themselves or a loved on, or any other challenging time, saying nothing is as if you do not care and have not thought about that person. It is as if whatever that person is going through is not a thought on your mind, like they do not matter at all. Trust me, I know where the crickets are coming from. Off the top of my head, I have 3. Three VERY unexpected and unrelated people, but still shocking to hear the crickets as loud I have heard them.
But, only three.
The amount of people I have supporting me? I HAVE NO IDEA!! I can't count them all! I am SO lucky for that!
So thank you. Thank all of you who are reading this and who are in my corner. I love, need and appreciate that more than I could ever possibly express. It means so much to me. That's why all the cards are taking over the island in the kitchen. I can't take them down. I need the reminder of the support that I have. I need that. I need to see it as a constant reminder to help me get through this.
THANK YOU!
Keep your positive words of encouragement coming. I love the texts, facebook messages, emails, cards, calls... I love feeling all of the love. I know I am going to need it all to get me through the next leg of this journey.
Wednesday the appointments I have are keeping me mentally in check. Friday morning is with the plastic surgeon to HOPEFULLY have the 3 remaining drains removed and for a fill on the expanders... get these boobs growing a little more.
Next week I see the medical oncologist on Monday. I'm expecting her to tell me more about when chemo will be starting. On Thursday I see the surgical oncologist to check in with her.
OH YEAH! How the hell could I forget that???
She called, my medical oncologist, last week on Thursday.
My pathology report from surgery was in. The one tested lymph node was positive during surgery, so they took them all. It was 11 in total. That was the only positive. The other 10 are all considered negative. YAY!
My left side had No Evidence of Disease (NED). On my MRI, there were a couple of areas of concern, but nothing was found on the ultrasound for the biopsy.
On the right, the original tumor was 2.5cm. There were 2 others. One was 1cm and the last was 6mm.
HOLY SHIT. WOW.
Because of the one lymph node, I may end up needing to have radiation after chemo is done. HOPING that I don't. I don't want to add more on to the end of this. I really don't want that tacked on to the end. But they are referring me for a consultation with a radiologist at Dana Farber to review my case with me.
Taking all of it into consideration, I'm GUESSING at my stage. I am pretty sure it is a IIB, but I'll need to have the medical oncologist confirm that for me in my appointment with her next Monday. That's in the lymph nodes, but not sticking together (only one involved, so I'm assuming no sticking) and tumor size between 2-5cm. Adding them all together, they are under 5. Works, right?
Anyway.. that's it for today.. I'm tired and its 11:30.
Gotta get to bed for a long day of nothing tomorrow.
Tuesday, January 15, 2013
Better Than Expected
It was hard to prepare when I didn't know what I was preparing for. I had no how I was going to be feeling after surgery. I'm better than I thought.
Every day I'm exhausted and need a nap. I woke up today around 6:30am. My friend Michelle was over around 7 for Jim to go to work. I was up all morning and basically pissing Michelle off since I wouldn't sit still. She thought me laying on the recliner with my lap top on me wasn't resting!
I have someone lift anything too heavy for me, open the heavy low freezer drawer, get me glasses or plates from the higher cabinets along with anything else on shelves above my shoulders (okay, so on ANY shelf). Jim even made me my coffee today because I couldn't lift my arms high enough.
Michelle complained to the nurse today just as Jim did yesterday... that I'm doing too much. But moving around is good for me. Gets everything flowing and I can heal faster. That's why I made Michelle go for a walk with me today. It felt great to get out.
When we got back, the mail came and so did a delivery. Cousin's on dad's side, the Maiullari "girls" sent over a beautiful arrangement. LOVE it. Jen and Jeff sent over a great English breakfast of goodies... scones, English muffins, coffees, SO yummy looking! That will be breakfast for a few days. :)
The next package was a bit confusing. First from Jen and Jeff, then from Jeff and Jen. First was my friend Jen and her boyfriend Jeff. Second took me a minute to realize, my brother Jeff and his girlfriend Jen. They sent me the cutest pajama-gram! Adorable! Can't wait for them to be washed so I can wear them.
Jim was home from work shortly after that. He had a huge back from the office filled with food. Frozen Turkey Chili,, HUGE container! Some baked ziti and Chicken Parm, Marcela's incredible Mac & Cheese, and some chocolate chip cookies that I can't stop eating!
Also today, I got a call from the Ellie Fund. My social worker had put in an application for me. They approved the meal deliveries, Dish and Deliver. So they will be delivering 8 meals each for February and March and each meal serves 2-3 people. I got the February menu to pick from and some look so good!
They also approved me for home cleaning services, four times for 3 hours each time! What a HUGE relief. I got an email from them as well today asking some info about the house and what I would need. Kitchen, floor and bathroom is PERFECT!! Maybe even washing the sheets for me too. Less on Jim and a HUGE help for me.
My social worker also put me in for a grocery gift card. She has to see how many people applied for that but knew she could do the other 2 now so she didn't want to hold those up.
I'm still waiting to hear back about the Komen Foundation. I was put in for that for a $200 grant that I could use towards anything. That would be such a huge help!
And that's another thought I had today. I had the news on tonight on Channel 4 and they did a story. It was about how medical costs, even with insurance, can be so high. Fundraising websites are expanding for personal fundraising to assist people with these type of expenses. If you want to see the story, here's the link:
http://boston.cbslocal.com/2013/01/14/crowdfunding-being-used-more-often-for-medical-costs/
Well, that got me thinking about my medical expenses since my company benefit year started on July 1st through today as well as what I have expected in the future. When our plan year started, I did my eflex spending account again, for $1200 for July 1, 2012- June 30, 2013. The $1200 was gone in November. (remember I had MRI's, xrays, multiple appointments and wrist surgery in September, BEFORE cancer was something to think about!)
Since then? Since cancer? Since Fertility Preservation?
EFlex card GONE $1200.00
CVS (copays, med equip, etc) $220.00
Fertility Drug Copays $240.00
Dr. Appt office visits (pd or owe) $1775.00
Total: $3435.00
Of that almost $3500, I currently owe just over $1500 in copays to date (including the 2 egg retrieval day surgeries at $250 each plus the bilateral mastectomy inpatient stay copay of $500).
I have been trying to keep up with everything, but Dana Farber hasn't charged me copays in advance. I've only gotten billed for a few and I haven't paid those yet. I want to be very clear about what I'm paying for and have detailed records of what insurance is paying and what I owe which amount to.
With the current daily prescriptions I take, that's $75/month for those prescription copays. Plus another $250 when the expanders are swapped out for the permanent implants. $25 for each office visit (minus the next 3 months with the 2 surgeons I had since that's covered under follow up for 90 days after surgery). That will be $25 each time I have chemo since I'll be seeing the medical oncologist each time, plus the appointment I have with her this month and I'm sure at least one after chemo is done... so just to be even, say 10 visits with her for $250.
That's no other medications, no other copays or doctor visits. So conservative figures? I'm guessing through the end of August I'll have another $3000 plus in out of pocket medical expenses.
Toss in all the equipment, clothes and whatnot I bought in preparation for surgery (alert sleeve, pj's, slippers, etc), the books I bought about breast cancer, then other expenses in general as well. My car insurance went up over $200 for 3 months because I moved in with Jim into his city from where I was! I'm going to be on short term disability which is only 66% pay and I'll have to pay back work for any benefits that they cover for me when/if I don't have a paycheck to cover my premiums. My share of my insurance benefits? Over $400/month. For Medical, Dental, Eye and Short-Term disability alone. Nothing else is part of that $400/month.
I can't expect Jim to financially support me during this as well physically and emotionally supporting me with all that he has done. I am determined to continue to pay my way, whatever it is going to take. And I'm sure Dana Farber will be fine with slower payments on all of what I'll owe them, especially since they don't charge me anything when I'm physically there anyway.
But because my after insurance out of pocket expense will be another $3000 with me already owing over $1500 now? I am really considering opening up my own GoFundMe fundraising page. I hate asking for help. HATE it. But with less money coming in and more going out that I just can't control, even with not paying rent anymore, if I DIDN'T give Jim any money, I would STILL be behind.
But I'm nervous about it. I hate asking. I hate needing help and hate being weak. I don't like handouts. So right now I'm just conflicted. I'm looking into it and reading up on the website for GoFundMe. The costs are minimal to me. 2.9% plus $0.30 is taken out of each transaction made.
What are thoughts on this? It is worth is? Once I have a page up and approved, then have $100 posted, my page would become searchable on their site. That means that people I don't know would also have access to it.
I don't know. I'm on the fence. I can't decide what I want to do. I'd love to hear thoughts on this!!!
Every day I'm exhausted and need a nap. I woke up today around 6:30am. My friend Michelle was over around 7 for Jim to go to work. I was up all morning and basically pissing Michelle off since I wouldn't sit still. She thought me laying on the recliner with my lap top on me wasn't resting!
I have someone lift anything too heavy for me, open the heavy low freezer drawer, get me glasses or plates from the higher cabinets along with anything else on shelves above my shoulders (okay, so on ANY shelf). Jim even made me my coffee today because I couldn't lift my arms high enough.
Michelle complained to the nurse today just as Jim did yesterday... that I'm doing too much. But moving around is good for me. Gets everything flowing and I can heal faster. That's why I made Michelle go for a walk with me today. It felt great to get out.
When we got back, the mail came and so did a delivery. Cousin's on dad's side, the Maiullari "girls" sent over a beautiful arrangement. LOVE it. Jen and Jeff sent over a great English breakfast of goodies... scones, English muffins, coffees, SO yummy looking! That will be breakfast for a few days. :)
The next package was a bit confusing. First from Jen and Jeff, then from Jeff and Jen. First was my friend Jen and her boyfriend Jeff. Second took me a minute to realize, my brother Jeff and his girlfriend Jen. They sent me the cutest pajama-gram! Adorable! Can't wait for them to be washed so I can wear them.
Jim was home from work shortly after that. He had a huge back from the office filled with food. Frozen Turkey Chili,, HUGE container! Some baked ziti and Chicken Parm, Marcela's incredible Mac & Cheese, and some chocolate chip cookies that I can't stop eating!
Also today, I got a call from the Ellie Fund. My social worker had put in an application for me. They approved the meal deliveries, Dish and Deliver. So they will be delivering 8 meals each for February and March and each meal serves 2-3 people. I got the February menu to pick from and some look so good!
They also approved me for home cleaning services, four times for 3 hours each time! What a HUGE relief. I got an email from them as well today asking some info about the house and what I would need. Kitchen, floor and bathroom is PERFECT!! Maybe even washing the sheets for me too. Less on Jim and a HUGE help for me.
My social worker also put me in for a grocery gift card. She has to see how many people applied for that but knew she could do the other 2 now so she didn't want to hold those up.
I'm still waiting to hear back about the Komen Foundation. I was put in for that for a $200 grant that I could use towards anything. That would be such a huge help!
And that's another thought I had today. I had the news on tonight on Channel 4 and they did a story. It was about how medical costs, even with insurance, can be so high. Fundraising websites are expanding for personal fundraising to assist people with these type of expenses. If you want to see the story, here's the link:
http://boston.cbslocal.com/2013/01/14/crowdfunding-being-used-more-often-for-medical-costs/
Well, that got me thinking about my medical expenses since my company benefit year started on July 1st through today as well as what I have expected in the future. When our plan year started, I did my eflex spending account again, for $1200 for July 1, 2012- June 30, 2013. The $1200 was gone in November. (remember I had MRI's, xrays, multiple appointments and wrist surgery in September, BEFORE cancer was something to think about!)
Since then? Since cancer? Since Fertility Preservation?
EFlex card GONE $1200.00
CVS (copays, med equip, etc) $220.00
Fertility Drug Copays $240.00
Dr. Appt office visits (pd or owe) $1775.00
Total: $3435.00
Of that almost $3500, I currently owe just over $1500 in copays to date (including the 2 egg retrieval day surgeries at $250 each plus the bilateral mastectomy inpatient stay copay of $500).
I have been trying to keep up with everything, but Dana Farber hasn't charged me copays in advance. I've only gotten billed for a few and I haven't paid those yet. I want to be very clear about what I'm paying for and have detailed records of what insurance is paying and what I owe which amount to.
With the current daily prescriptions I take, that's $75/month for those prescription copays. Plus another $250 when the expanders are swapped out for the permanent implants. $25 for each office visit (minus the next 3 months with the 2 surgeons I had since that's covered under follow up for 90 days after surgery). That will be $25 each time I have chemo since I'll be seeing the medical oncologist each time, plus the appointment I have with her this month and I'm sure at least one after chemo is done... so just to be even, say 10 visits with her for $250.
That's no other medications, no other copays or doctor visits. So conservative figures? I'm guessing through the end of August I'll have another $3000 plus in out of pocket medical expenses.
Toss in all the equipment, clothes and whatnot I bought in preparation for surgery (alert sleeve, pj's, slippers, etc), the books I bought about breast cancer, then other expenses in general as well. My car insurance went up over $200 for 3 months because I moved in with Jim into his city from where I was! I'm going to be on short term disability which is only 66% pay and I'll have to pay back work for any benefits that they cover for me when/if I don't have a paycheck to cover my premiums. My share of my insurance benefits? Over $400/month. For Medical, Dental, Eye and Short-Term disability alone. Nothing else is part of that $400/month.
I can't expect Jim to financially support me during this as well physically and emotionally supporting me with all that he has done. I am determined to continue to pay my way, whatever it is going to take. And I'm sure Dana Farber will be fine with slower payments on all of what I'll owe them, especially since they don't charge me anything when I'm physically there anyway.
But because my after insurance out of pocket expense will be another $3000 with me already owing over $1500 now? I am really considering opening up my own GoFundMe fundraising page. I hate asking for help. HATE it. But with less money coming in and more going out that I just can't control, even with not paying rent anymore, if I DIDN'T give Jim any money, I would STILL be behind.
But I'm nervous about it. I hate asking. I hate needing help and hate being weak. I don't like handouts. So right now I'm just conflicted. I'm looking into it and reading up on the website for GoFundMe. The costs are minimal to me. 2.9% plus $0.30 is taken out of each transaction made.
What are thoughts on this? It is worth is? Once I have a page up and approved, then have $100 posted, my page would become searchable on their site. That means that people I don't know would also have access to it.
I don't know. I'm on the fence. I can't decide what I want to do. I'd love to hear thoughts on this!!!
Sunday, January 13, 2013
A Few Days Out
I can now say I no longer have cancer in me. The 4-5 hour surgery ended up being about 6 1/2 hours.
The day started out rough. I woke up in tears and had a second melt down before we left the house. The third was in the car in the parking garage of the hospital. Jim's dad was at the hospital when we got there. He sat with us when I did the registration and then left when we went off to surgery. From there I changed, then they sent me off for the dye to be injected. That radiologist was great!
I went back to pre-op from there, met with both surgeons, the anesthesiologist, and a million other people. I vaguely remember being wheeled down the hallway, off to surgery.
They took out the breast tissue and with the sentinel lymph node dissection (only taking the first lymph nodes that showed the dye), but those tested positive for cancer. So they took all of the lymph nodes on my right side.
Dr. Calvillo updated Jim on my status who passed it along to everyone else. Then Dr. Chun started the reconstruction. I only remember a little about the recovery room, but they did allow Jim in there for a few. Then he was in my room when I got upstairs. My parents were there as well.
I did NOT sleep at all on Thursday night and was so cranky on Friday. The pain was okay for the most part. LOTS of drugs with the magic button. I am still in a bit of a haze right now. I can't seem to stay awake for me than an hour or so at a time.
Friday I had a bit of a meltdown. Well, more than a bit. I had an absolute panic attack. I called Jim because he can usually talk me out of it. Unfortunately my parents told him I needed rest so he waited to come in (which caused another panic attack).
After sleeping Friday night, I did better yesterday and that's when they sent me home. Last night I slept pretty good on the recliner.
Physically, I'm doing okay. Pain is minimal. I'm doing the exercises they told me to do, Jim is emptying out the drains and I'm taking the antibiotics. Things seems to be okay. I just feel really tight. Almost like a pulled muscle across my entire chest, under my arms. Breathing deeply hurts a bit and where the drains are attached, that hurts with any pressure against them at all.
Emotionally? I think I'm okay. I still feel a bit disconnected. The expanders are in and I got a bit more than I expected, so I'm not flat. I have something there. Just the incision line across each side. But it was still just more STUFF that I had to get through. I don't know. Really hard to explain.
A nurse was checking my bandages and changing them on Friday, just before Jim got there. I told her to do show Jim when he was there, before anyone else came in. She said my boobs looked fabulous. I had no bruising and they looked like regular boobs. I guess that's a really good thing.
The visiting nurse was here today and she said I looked great as well. She said she's seen work all over the place and she wouldn't say they looked great if they didn't. I'm hoping they were both being honest. I just know I don't see bruises. Right now they are smaller than what I saw when I looked down my shirt before, but not too much smaller.
I'm really numb though, more than I expected, all under my right arm. I guess that's from the lymph nodes. They said I'd need to be careful of lymphedema from now on, basically for my life. The lymph nodes are no longer there to clear out fluid or any bacteria if I get a cut or anything on my right arm. Cuts could become infected and anything could cause it to swell up. No blood draws or blood pressure on that arm forever. I was looking into some cute medical alert bracelets earlier that I liked. Good to have for an accident or whatever.
I'm just tired more than anything else. Exhausted. As in I could sleep for a month. I can barely keep my eyes open right now, but I've been awake for about 2 hours now and that's past my limit.
I'll try to keep updates up. My focus is so limited right now with this exhaustion. We'll see what I can do.
The day started out rough. I woke up in tears and had a second melt down before we left the house. The third was in the car in the parking garage of the hospital. Jim's dad was at the hospital when we got there. He sat with us when I did the registration and then left when we went off to surgery. From there I changed, then they sent me off for the dye to be injected. That radiologist was great!
I went back to pre-op from there, met with both surgeons, the anesthesiologist, and a million other people. I vaguely remember being wheeled down the hallway, off to surgery.
They took out the breast tissue and with the sentinel lymph node dissection (only taking the first lymph nodes that showed the dye), but those tested positive for cancer. So they took all of the lymph nodes on my right side.
Dr. Calvillo updated Jim on my status who passed it along to everyone else. Then Dr. Chun started the reconstruction. I only remember a little about the recovery room, but they did allow Jim in there for a few. Then he was in my room when I got upstairs. My parents were there as well.
I did NOT sleep at all on Thursday night and was so cranky on Friday. The pain was okay for the most part. LOTS of drugs with the magic button. I am still in a bit of a haze right now. I can't seem to stay awake for me than an hour or so at a time.
Friday I had a bit of a meltdown. Well, more than a bit. I had an absolute panic attack. I called Jim because he can usually talk me out of it. Unfortunately my parents told him I needed rest so he waited to come in (which caused another panic attack).
After sleeping Friday night, I did better yesterday and that's when they sent me home. Last night I slept pretty good on the recliner.
Physically, I'm doing okay. Pain is minimal. I'm doing the exercises they told me to do, Jim is emptying out the drains and I'm taking the antibiotics. Things seems to be okay. I just feel really tight. Almost like a pulled muscle across my entire chest, under my arms. Breathing deeply hurts a bit and where the drains are attached, that hurts with any pressure against them at all.
Emotionally? I think I'm okay. I still feel a bit disconnected. The expanders are in and I got a bit more than I expected, so I'm not flat. I have something there. Just the incision line across each side. But it was still just more STUFF that I had to get through. I don't know. Really hard to explain.
A nurse was checking my bandages and changing them on Friday, just before Jim got there. I told her to do show Jim when he was there, before anyone else came in. She said my boobs looked fabulous. I had no bruising and they looked like regular boobs. I guess that's a really good thing.
The visiting nurse was here today and she said I looked great as well. She said she's seen work all over the place and she wouldn't say they looked great if they didn't. I'm hoping they were both being honest. I just know I don't see bruises. Right now they are smaller than what I saw when I looked down my shirt before, but not too much smaller.
I'm really numb though, more than I expected, all under my right arm. I guess that's from the lymph nodes. They said I'd need to be careful of lymphedema from now on, basically for my life. The lymph nodes are no longer there to clear out fluid or any bacteria if I get a cut or anything on my right arm. Cuts could become infected and anything could cause it to swell up. No blood draws or blood pressure on that arm forever. I was looking into some cute medical alert bracelets earlier that I liked. Good to have for an accident or whatever.
I'm just tired more than anything else. Exhausted. As in I could sleep for a month. I can barely keep my eyes open right now, but I've been awake for about 2 hours now and that's past my limit.
I'll try to keep updates up. My focus is so limited right now with this exhaustion. We'll see what I can do.
Tuesday, January 8, 2013
Less Than 48 Hours
I'm trying to not freak out. I'm trying to do my best to keep some sort of control over how I'm feeling and over my anxiety. Some moments are better than others. Keeping busy has helped a lot.
Our Christmas Tree is still up. I'm purposely leaving that for tomorrow as my project for tomorrow night. I'll need something to do. Something to hopefully keep my mind off of things. And hopefully I'll be able to sleep the next two nights.
Today was pre-op at Faulkner. I got a little bit more info. They said to expect surgery to last 5 hours and recovery will be 4-6 weeks. I thought maybe 3! Big difference in that, huh?
I still feel SO disconnected to everything. I had all my appointments to make, the records to keep, lists to write out, what I'm packing, what has to be done at the house, people to hang out with me after surgery. THINGS to do. But surgery? cancer? It has been more of keeping track of my "to do" lists than anything else. cancer isn't a part of it.
It's like the cancer, the disease, the thing that can actually kill people... that's not part of this. I have just kept up with my huge "to do" lists, what has to get done, making and keeping the appointments, doing my research, buying what I need, prepping for everything as best I can. But cancer? A disease? My own mortality? What the F is that? That's not part of this!
But then those moments hit. When it is part of this. Little moments that I do my best to avoid but can't always. Like when I was leaving the breast center today after my final appointment with the surgical oncologist. Michelle works at the desk and she's SO nice all the time. She knows my surgery is in 2 days. When we were leaving, she gave me that look. The look I hate.
Its the "I feel bad for you" look that people give me. They know I have cancer and that I'm having surgery. It's the pity look. I hate the pity look. I don't want pity.
And I don't want to be a burden on anyone either. I hate asking for help or needing help from anyone. Asking for it and accepting it is so friggin difficult. And unfortunately Jim is the same way. When I tell him the lists of things that I won't be able to do (cleaning, cooking, laundry, food shopping, changing the kitty litter, getting things down off the shelves... ), all Jim says is "I'll take care of it baby. Don't worry."
He can't do everything! He's working full time, taking care of me, and he still NEEDS to work out to get some sort of release for himself. He just CANNOT do everything. I will need to have help. It will burn him out to do it all.
I'm so grateful for everyone who has been so supportive to me. The little things and the bigger things. Aimee is coming by tonight and we're grabbing something to eat but she's also bringing over a few things she made for me so I have food. Work is doing the same thing and they want to meet up with Jim weekly to get me a few meals a week to have at home. How nice is that?
I'm still checking on line to see if anything opened up for Cleaning for a Reason. They do free house cleaning once a month for people with cancer. That would make things so much easier on Jim! The one that came up in my area is maxed out right now. So, I just keep on checking.
Okay side note... Jim cooked chicken a bit ago. He had the left overs on a plate on the counter. Apparently Rocco could smell the chicken. I literally saw Rocco JUMP trying to get to it. Have you ever seen a 115 pound dog JUMP? And the best part?
Jim just asked me why a dish didn't make it into the dishwasher. I didn't know what he was talking about. He said, "when you turned on the dishwasher, why didn't you put this in first?" I didn't turn on the dishwasher. I assumed he had. He thought I had.
Nope. Rocco did! He bumped it when he was trying to get to the chicken on the counter! Now the damn dog does dishes! :)
It's things like that. The little day to day things that make me laugh and smile. I love that. I love our little "family" hanging out. I'm on the sofa with the recliner, typing away. Jim's laying with his head on the other side of the sofa, his feet near me, and we have a blanket over the two of us. And right now Rocco is laying on the floor just in front of the sofa, watching the same movie as Jim.
But I hate pity and feeling like I'm a burden. HATE. Asking for help is so hard for me. I'm lucky that so many have offered as much as they have. My friend Michelle was funny. She is basically telling me to be demanding. She is coming over for 2 days next week. She was the one who INSISTED that I have people with me 24 hours a day in case something happened. If Jim leaves before someone gets over, she's afraid something will happen. I really appreciate her thinking of me like that.
I will have a visiting nurse coming to the house. Probably not daily, but at least every couple of days. The drains needs to be emptied at least twice a day, then "milked" to make sure they don't clog up. WONDERFUL! Um, yeah, that's going to be a job for Jim! I'm all set with that. I can't watch a damn needle and couldn't look at my wrist after surgery. How the hell could I empty the drains out that are INSIDE of me on the other end??
It is just SO much to think about. Its overwhelming. Everything that's involved. My entire life is changing. My hair is chopped off and I look like a different person. When I got my license renewed in September, I compared the picture to my last one taken 10 years ago. Um, not too much for changes. I didn't even really age much. Same hair, same everything. TEN YEARS. I don't look me right now.
My boobs are being chopped off in 2 days. I won't have nipples. I'll have 3-4 inch scars across each side. I haven't been able to exercise because of doing fertility preservation when I'm not 100% sure if I want kids or not. I've gained a few pounds and lost a ton of muscle. I don't feel attractive at all right now.
I won't be able to life my arms above shoulder height. I won't be allowed to lift anything more than 5 pounds (a gallon container is 8 pounds. Need smaller containers for milk if I want to get my own coffee in the morning!) STUPID things I will need help with. I won't be allowed to shower! I have to get one of those friggin chairs for the shower. We bought a hand held shower thing so Jim can HELP me! WTF! He'll have to wash my hair for me in the sink. I feel like a child!
People keep telling me how well I'm handling all of this and how well I'm doing. They tell me how strong and positive I am being. I wish I was HALF as strong or positive as people thought I was. HALF. My mind is on a roller coaster ride, spinning out of control with tracks that seem like will never end. Ups, downs, twists, turns, and huge drops. It sucks.
That's when I put the damn smile on my face and disconnect from everything. cancer isn't part of it. This is just more crap I'm going through but not a friggin disease that could kill me if I did nothing. Nope. That's not on my "to do" list. Getting the tree and Christmas decorations down is on my to do list, but not cancer.
So I find control where I can get it. Make those lists, pack the bag. Buy things to prepare the house. Line up people to be at the house when I get home. Do research. Find support groups. Find other resources that could be available. Keep records. Cut my hair. DO SOMETHING! Action. That's what I need.
There is no more action to take. Now I just wait. Wait until Thursday.
Our Christmas Tree is still up. I'm purposely leaving that for tomorrow as my project for tomorrow night. I'll need something to do. Something to hopefully keep my mind off of things. And hopefully I'll be able to sleep the next two nights.
Today was pre-op at Faulkner. I got a little bit more info. They said to expect surgery to last 5 hours and recovery will be 4-6 weeks. I thought maybe 3! Big difference in that, huh?
I still feel SO disconnected to everything. I had all my appointments to make, the records to keep, lists to write out, what I'm packing, what has to be done at the house, people to hang out with me after surgery. THINGS to do. But surgery? cancer? It has been more of keeping track of my "to do" lists than anything else. cancer isn't a part of it.
It's like the cancer, the disease, the thing that can actually kill people... that's not part of this. I have just kept up with my huge "to do" lists, what has to get done, making and keeping the appointments, doing my research, buying what I need, prepping for everything as best I can. But cancer? A disease? My own mortality? What the F is that? That's not part of this!
But then those moments hit. When it is part of this. Little moments that I do my best to avoid but can't always. Like when I was leaving the breast center today after my final appointment with the surgical oncologist. Michelle works at the desk and she's SO nice all the time. She knows my surgery is in 2 days. When we were leaving, she gave me that look. The look I hate.
Its the "I feel bad for you" look that people give me. They know I have cancer and that I'm having surgery. It's the pity look. I hate the pity look. I don't want pity.
And I don't want to be a burden on anyone either. I hate asking for help or needing help from anyone. Asking for it and accepting it is so friggin difficult. And unfortunately Jim is the same way. When I tell him the lists of things that I won't be able to do (cleaning, cooking, laundry, food shopping, changing the kitty litter, getting things down off the shelves... ), all Jim says is "I'll take care of it baby. Don't worry."
He can't do everything! He's working full time, taking care of me, and he still NEEDS to work out to get some sort of release for himself. He just CANNOT do everything. I will need to have help. It will burn him out to do it all.
I'm so grateful for everyone who has been so supportive to me. The little things and the bigger things. Aimee is coming by tonight and we're grabbing something to eat but she's also bringing over a few things she made for me so I have food. Work is doing the same thing and they want to meet up with Jim weekly to get me a few meals a week to have at home. How nice is that?
I'm still checking on line to see if anything opened up for Cleaning for a Reason. They do free house cleaning once a month for people with cancer. That would make things so much easier on Jim! The one that came up in my area is maxed out right now. So, I just keep on checking.
Okay side note... Jim cooked chicken a bit ago. He had the left overs on a plate on the counter. Apparently Rocco could smell the chicken. I literally saw Rocco JUMP trying to get to it. Have you ever seen a 115 pound dog JUMP? And the best part?
Jim just asked me why a dish didn't make it into the dishwasher. I didn't know what he was talking about. He said, "when you turned on the dishwasher, why didn't you put this in first?" I didn't turn on the dishwasher. I assumed he had. He thought I had.
Nope. Rocco did! He bumped it when he was trying to get to the chicken on the counter! Now the damn dog does dishes! :)
It's things like that. The little day to day things that make me laugh and smile. I love that. I love our little "family" hanging out. I'm on the sofa with the recliner, typing away. Jim's laying with his head on the other side of the sofa, his feet near me, and we have a blanket over the two of us. And right now Rocco is laying on the floor just in front of the sofa, watching the same movie as Jim.
But I hate pity and feeling like I'm a burden. HATE. Asking for help is so hard for me. I'm lucky that so many have offered as much as they have. My friend Michelle was funny. She is basically telling me to be demanding. She is coming over for 2 days next week. She was the one who INSISTED that I have people with me 24 hours a day in case something happened. If Jim leaves before someone gets over, she's afraid something will happen. I really appreciate her thinking of me like that.
I will have a visiting nurse coming to the house. Probably not daily, but at least every couple of days. The drains needs to be emptied at least twice a day, then "milked" to make sure they don't clog up. WONDERFUL! Um, yeah, that's going to be a job for Jim! I'm all set with that. I can't watch a damn needle and couldn't look at my wrist after surgery. How the hell could I empty the drains out that are INSIDE of me on the other end??
It is just SO much to think about. Its overwhelming. Everything that's involved. My entire life is changing. My hair is chopped off and I look like a different person. When I got my license renewed in September, I compared the picture to my last one taken 10 years ago. Um, not too much for changes. I didn't even really age much. Same hair, same everything. TEN YEARS. I don't look me right now.
My boobs are being chopped off in 2 days. I won't have nipples. I'll have 3-4 inch scars across each side. I haven't been able to exercise because of doing fertility preservation when I'm not 100% sure if I want kids or not. I've gained a few pounds and lost a ton of muscle. I don't feel attractive at all right now.
I won't be able to life my arms above shoulder height. I won't be allowed to lift anything more than 5 pounds (a gallon container is 8 pounds. Need smaller containers for milk if I want to get my own coffee in the morning!) STUPID things I will need help with. I won't be allowed to shower! I have to get one of those friggin chairs for the shower. We bought a hand held shower thing so Jim can HELP me! WTF! He'll have to wash my hair for me in the sink. I feel like a child!
People keep telling me how well I'm handling all of this and how well I'm doing. They tell me how strong and positive I am being. I wish I was HALF as strong or positive as people thought I was. HALF. My mind is on a roller coaster ride, spinning out of control with tracks that seem like will never end. Ups, downs, twists, turns, and huge drops. It sucks.
That's when I put the damn smile on my face and disconnect from everything. cancer isn't part of it. This is just more crap I'm going through but not a friggin disease that could kill me if I did nothing. Nope. That's not on my "to do" list. Getting the tree and Christmas decorations down is on my to do list, but not cancer.
So I find control where I can get it. Make those lists, pack the bag. Buy things to prepare the house. Line up people to be at the house when I get home. Do research. Find support groups. Find other resources that could be available. Keep records. Cut my hair. DO SOMETHING! Action. That's what I need.
There is no more action to take. Now I just wait. Wait until Thursday.
Sunday, January 6, 2013
Boudoir Party and 4 Days
Lately I have found that my anxiety is better when I'm going, moving and being active. It's the sitting around and having too much time to think and get in my head that gets me into trouble Like when its time to go to bed. That's the hardest part. Laying in bed, trying to fall asleep, with my mind wandering everywhere- especially to the dark places.
But when I'm busy, I don't have time to think. I don't have time to go to those dark place. My focus is limited, but when I'm doing something with a purpose, I can be me and just be. I'm all about doing what I have to do in the moment. Easier said than done sometimes.
Friday night, like I said, was great at the 99 Restaurant, seeing our bartenders and basically saying bye for a while They are so nice over there.
Yesterday I was able to keep busy too. I had a bunch of stuff to do around the house. I was out shopping for a while. Got my great purple pedi along with french tips for the photo shoot. I bought the CUTEST pair of shoes too!
When I got home and started to get ready to meet my friends, I was doing a little modeling thing for Jim, trying on all the stuff I was bringing with me and thinking of wearing. I got to wear two different things for the shoot (my friends had one outfit each for their shoot). I didn't know what I was going to go with.
WOW did I bring along a lot of crap. No wonder that I over pack for every trip I go on. I brought 5 different pairs of shoes last night, not to mention the boots that I was wearing! What I didn't wear was Jim's button down shirt, the pink babydoll thing, jeans with a black bra and white wife beater tank, my black slinky dress, Jim's fighting shorts. I think that's all I brought that I didn't wear. I might be missing something.
The night itself was a blast. We were all so nervous when we got there. We took turns in hair and makeup. Makeup was done by Maryjo Shanahan, a Mary Kay consultant. She was great! We all looked so great. And hair was done by Stephanie Scandura. She rocked out my hair in a way I didn't think was possible!
There was also a stylist on site; Tricia from Trust in Tricia (iTrustInTricia.com). I'm really glad she was there to help with a few little things here and there, plus with some accessories too.
Lauren Cloutier from Cloutier Photography was the photographer. It was just so much fun!!!
When we walked in, Lauren gave me a big hug. She did the introductions, got as all some Prosecco while the hair and makeup was getting setup. The four of us were pretty nervous and there were several giggles and uncomfortable chuckles. After a few glasses of Prosecco, hair and makeup and great encouragement from all the incredible women who were present, I think everyone's nerves began to settle a bit.
Jen was up first. Her dark hair was curled, and her makeup was amazing. She looked stunning in her black little thing! She made it look so easy. Tracie went second and had such a classic look in her black get up too. Hmmm.... were we all wearing black?
I was in makeup when Tracie finished up. Christine kicked everyone out when she started up, but then let them back in. I missed all but her last shot. And even then, I didn't have glasses on so I could barely see. Funny, cuz that's when everyone was turned around to not watch the super sexy thing she had going on!
Then it was my turn for outfit #1. My little black lace undies, with a black babydoll thing. Tracie let me wear this amazing necklace. It had at least 5 strands of pink pearls in different lengths. I felt great posing for the camera, doing different angles and smiling or giving a more serious look. There was something about the great feedback from everyone, done with hair and makeup, posing on a bed, under the lights, in front of the camera wearing a sexy little barely there thing. It was cool!
Then it was time for outfit #2. The black lace undies stayed on. I had on a black lace bra with a white wife beater tank top over it. The pearls were replaced with Jim's thick silver link chain. I took off the pretty rings and strapped on Jim's new boxing gloves. That was SO fun! Posing with the gloves up, then looking down my right arm.
It was fun sitting on a bench with my arms up against the wall, flexing. Then pulling at the strap of the tank top too.
But my favorite shot to have taken?? That's when I lost the tank top and lace bra. I stood there in my black and white heals, black lace undies, Jim's silver chain, wearing Jim's boxing gloves with my gloved hands over my bare breasts. THAT was cool.
With everything I'm going through, with breast cancer, doing a topless shot with the boxing gloves covering me... that was cool. I can't wait to see that picture!
We did a few group shots in the end, with all of us back in our black things. First we were all sitting on the bench at edge of the bed. Then she did a great one... me towards the middle with them all hugging me. It was pretty cool.
I HIGHLY recommend to every woman out there... do a Boudoir Photo Shoot! WOW was it fun. It was empowering, sexy and fun. And none of us have seen ANY pictures yet!
We'll go back in a couple of weeks for our "Viewing Party" to pick out what we want. I can't wait!
I needed a night like last night with friends so much. I really really needed that. I needed to feel good about myself and to feel pretty and sexy. I still had a meltdown when I got home and feel asleep in tears but the night itself out with the girls was a blast. I wouldn't change a thing.
Today is Sunday dinner with Jim's family. I am looking forward to that too. Tomorrow is back to work with a couple of appointments tossed in. Mom and Dad are popping over tomorrow night and we're going out for dinner. Tuesday is my surgical oncologist appointment, then pre-op at Faulkner. Wednesday is two am appointments, then work. And Thursday is it. D-day. Surgery day. Boobs cut off and cancer cut out of me.
This week is going to be REALLY hard for me. REALLY HARD. I'll be in surgery 4 days from right now. That's NUTS!
I wasn't exactly sure what to expect last night for the Boudoir Party that I won.
But when I'm busy, I don't have time to think. I don't have time to go to those dark place. My focus is limited, but when I'm doing something with a purpose, I can be me and just be. I'm all about doing what I have to do in the moment. Easier said than done sometimes.
Friday night, like I said, was great at the 99 Restaurant, seeing our bartenders and basically saying bye for a while They are so nice over there.
Yesterday I was able to keep busy too. I had a bunch of stuff to do around the house. I was out shopping for a while. Got my great purple pedi along with french tips for the photo shoot. I bought the CUTEST pair of shoes too!
When I got home and started to get ready to meet my friends, I was doing a little modeling thing for Jim, trying on all the stuff I was bringing with me and thinking of wearing. I got to wear two different things for the shoot (my friends had one outfit each for their shoot). I didn't know what I was going to go with.
WOW did I bring along a lot of crap. No wonder that I over pack for every trip I go on. I brought 5 different pairs of shoes last night, not to mention the boots that I was wearing! What I didn't wear was Jim's button down shirt, the pink babydoll thing, jeans with a black bra and white wife beater tank, my black slinky dress, Jim's fighting shorts. I think that's all I brought that I didn't wear. I might be missing something.
The night itself was a blast. We were all so nervous when we got there. We took turns in hair and makeup. Makeup was done by Maryjo Shanahan, a Mary Kay consultant. She was great! We all looked so great. And hair was done by Stephanie Scandura. She rocked out my hair in a way I didn't think was possible!
There was also a stylist on site; Tricia from Trust in Tricia (iTrustInTricia.com). I'm really glad she was there to help with a few little things here and there, plus with some accessories too.
Lauren Cloutier from Cloutier Photography was the photographer. It was just so much fun!!!
When we walked in, Lauren gave me a big hug. She did the introductions, got as all some Prosecco while the hair and makeup was getting setup. The four of us were pretty nervous and there were several giggles and uncomfortable chuckles. After a few glasses of Prosecco, hair and makeup and great encouragement from all the incredible women who were present, I think everyone's nerves began to settle a bit.
Jen was up first. Her dark hair was curled, and her makeup was amazing. She looked stunning in her black little thing! She made it look so easy. Tracie went second and had such a classic look in her black get up too. Hmmm.... were we all wearing black?
I was in makeup when Tracie finished up. Christine kicked everyone out when she started up, but then let them back in. I missed all but her last shot. And even then, I didn't have glasses on so I could barely see. Funny, cuz that's when everyone was turned around to not watch the super sexy thing she had going on!
Then it was my turn for outfit #1. My little black lace undies, with a black babydoll thing. Tracie let me wear this amazing necklace. It had at least 5 strands of pink pearls in different lengths. I felt great posing for the camera, doing different angles and smiling or giving a more serious look. There was something about the great feedback from everyone, done with hair and makeup, posing on a bed, under the lights, in front of the camera wearing a sexy little barely there thing. It was cool!
Then it was time for outfit #2. The black lace undies stayed on. I had on a black lace bra with a white wife beater tank top over it. The pearls were replaced with Jim's thick silver link chain. I took off the pretty rings and strapped on Jim's new boxing gloves. That was SO fun! Posing with the gloves up, then looking down my right arm.
It was fun sitting on a bench with my arms up against the wall, flexing. Then pulling at the strap of the tank top too.
But my favorite shot to have taken?? That's when I lost the tank top and lace bra. I stood there in my black and white heals, black lace undies, Jim's silver chain, wearing Jim's boxing gloves with my gloved hands over my bare breasts. THAT was cool.
With everything I'm going through, with breast cancer, doing a topless shot with the boxing gloves covering me... that was cool. I can't wait to see that picture!
We did a few group shots in the end, with all of us back in our black things. First we were all sitting on the bench at edge of the bed. Then she did a great one... me towards the middle with them all hugging me. It was pretty cool.
I HIGHLY recommend to every woman out there... do a Boudoir Photo Shoot! WOW was it fun. It was empowering, sexy and fun. And none of us have seen ANY pictures yet!
We'll go back in a couple of weeks for our "Viewing Party" to pick out what we want. I can't wait!
I needed a night like last night with friends so much. I really really needed that. I needed to feel good about myself and to feel pretty and sexy. I still had a meltdown when I got home and feel asleep in tears but the night itself out with the girls was a blast. I wouldn't change a thing.
Today is Sunday dinner with Jim's family. I am looking forward to that too. Tomorrow is back to work with a couple of appointments tossed in. Mom and Dad are popping over tomorrow night and we're going out for dinner. Tuesday is my surgical oncologist appointment, then pre-op at Faulkner. Wednesday is two am appointments, then work. And Thursday is it. D-day. Surgery day. Boobs cut off and cancer cut out of me.
This week is going to be REALLY hard for me. REALLY HARD. I'll be in surgery 4 days from right now. That's NUTS!
I wasn't exactly sure what to expect last night for the Boudoir Party that I won.
Saturday, January 5, 2013
Five Days??
Holy Cow. Five Days. This is just coming so quickly. I can't believe it. I'm trying to do everything I can to prepare, but how do I really prepare for this?
My anxiety level has been getting higher and higher with each passing day. I'm just trying to keep busy and fill my time with as much fun as I can. I want to be happy over the next 5 days and do what I can to limit my stress and anxiety. I don't need more right now.
I'm feeling a little better after yesterday's IVF thing. I'm still crazy bloated. I have a heating pad back on my belly and I still look pregnant. One good thing for the sexy photo shoot tonight, my boobs are insanely swollen too. Holy crap! So I'm sure that will look good in these pictures! :)
Little things, that's all I can do and all I can focus on right now.
SO much more around the house to do. Our tree is still up. All of Christmas needs to come down and get up into the attic. We need to scrub down the house completely. I need to vacuum the cats apartment downstairs and clean up the entry way too. Just make sure the whole house is in order.
Today I need a mani/pedi before the photo shoot. Plus I need to hit the store to pick up a few more things I want to have ready. I'm afraid I'm going to forget things. With all my lists, I doubt that is really possible, but who knows.
A good thing is that I'm better at recognizing when my anxiety is starting to climb. I can feel it better now and have more control over managing it. Maybe its the meds I'm taking that are kicking in at this point. Whatever it is, something makes me realize it is starting and I can have a better shot of controling it before it is too bad. Not always, just sometimes.
I'm still crying at least once every day now. Little things. Always the damn little things! And it is just the icing on the cake, the push over the edge or however I should say it. That one little thing that sets me off to tears. But, the tears haven't been hysterics in a while. Not sobbing with hyperventaliting tossed in. Just tears. Just sad.
I'm losing a lot. I know that. But I can't focus on that part either. I have to do what I can to stay positive and focus on the positive. The amazing support I am SO lucky to have. The incredible friends who have just stepped up to be there for me. I cannot say enough HOW much I appreciate it all.
I LOVE the text messages, facebook messages, emails, cards and phone calls. Just an acknowledgement that I'm being thought of. Sometimes I'm in the middle of something when I see the messages and can't always get back to it or don't always remember to get back to it to reply. It doesn't mean I didn't read it and didn't love it. I NEED those messages, so THANK YOU!
Some of my friends and family have been amazing. I do love that this has brought me closer to some people. And the support from people I haven't heard from or spoken to in years has been incredible. People have noticed my facebook posts and sent the kindest messages back to me. From people I never would expected anything from. That has been so touching. Literally bringing tears to my eyes.
This blog really gives me so much of a release. Sometimes I do hold back on what I write. I know how blunt I already am and I don't want to freak out people reading too much. Some people already tell me that they have a hard time reading this because it makes them cry.
What I'm most suprised about it the people reading the blog. I can't believe how many people have read it and from where. Do I really have regular readers from the UK and from Germany?? In the past week I have a total of 303 page views. And in the past month??? I have had 777 views from around the WORLD! That just blows my mind.
I mean, who am I? This is where I vent. This is where I put my fears down so all this crap can get out of my head. That just seems crazy to me.
I posted the summary below of who is reading from where.
Dec 29, 2012 11:00 AM – Jan 5, 2013 10:00 AM
Dec 6, 2012 – Jan 4, 2012
My anxiety level has been getting higher and higher with each passing day. I'm just trying to keep busy and fill my time with as much fun as I can. I want to be happy over the next 5 days and do what I can to limit my stress and anxiety. I don't need more right now.
I'm feeling a little better after yesterday's IVF thing. I'm still crazy bloated. I have a heating pad back on my belly and I still look pregnant. One good thing for the sexy photo shoot tonight, my boobs are insanely swollen too. Holy crap! So I'm sure that will look good in these pictures! :)
Little things, that's all I can do and all I can focus on right now.
SO much more around the house to do. Our tree is still up. All of Christmas needs to come down and get up into the attic. We need to scrub down the house completely. I need to vacuum the cats apartment downstairs and clean up the entry way too. Just make sure the whole house is in order.
Today I need a mani/pedi before the photo shoot. Plus I need to hit the store to pick up a few more things I want to have ready. I'm afraid I'm going to forget things. With all my lists, I doubt that is really possible, but who knows.
A good thing is that I'm better at recognizing when my anxiety is starting to climb. I can feel it better now and have more control over managing it. Maybe its the meds I'm taking that are kicking in at this point. Whatever it is, something makes me realize it is starting and I can have a better shot of controling it before it is too bad. Not always, just sometimes.
I'm still crying at least once every day now. Little things. Always the damn little things! And it is just the icing on the cake, the push over the edge or however I should say it. That one little thing that sets me off to tears. But, the tears haven't been hysterics in a while. Not sobbing with hyperventaliting tossed in. Just tears. Just sad.
I'm losing a lot. I know that. But I can't focus on that part either. I have to do what I can to stay positive and focus on the positive. The amazing support I am SO lucky to have. The incredible friends who have just stepped up to be there for me. I cannot say enough HOW much I appreciate it all.
I LOVE the text messages, facebook messages, emails, cards and phone calls. Just an acknowledgement that I'm being thought of. Sometimes I'm in the middle of something when I see the messages and can't always get back to it or don't always remember to get back to it to reply. It doesn't mean I didn't read it and didn't love it. I NEED those messages, so THANK YOU!
Some of my friends and family have been amazing. I do love that this has brought me closer to some people. And the support from people I haven't heard from or spoken to in years has been incredible. People have noticed my facebook posts and sent the kindest messages back to me. From people I never would expected anything from. That has been so touching. Literally bringing tears to my eyes.
This blog really gives me so much of a release. Sometimes I do hold back on what I write. I know how blunt I already am and I don't want to freak out people reading too much. Some people already tell me that they have a hard time reading this because it makes them cry.
What I'm most suprised about it the people reading the blog. I can't believe how many people have read it and from where. Do I really have regular readers from the UK and from Germany?? In the past week I have a total of 303 page views. And in the past month??? I have had 777 views from around the WORLD! That just blows my mind.
I mean, who am I? This is where I vent. This is where I put my fears down so all this crap can get out of my head. That just seems crazy to me.
I posted the summary below of who is reading from where.
Dec 29, 2012 11:00 AM – Jan 5, 2013 10:00 AM
| Entry | Pageviews |
|---|---|
United States
|
292
|
United Kingdom
|
5
|
Germany
|
3
|
Israel
|
1
|
Ukraine
|
1
|
Venezuela
|
1
|
Dec 6, 2012 – Jan 4, 2012
| Entry | Pageviews |
|---|---|
United States
|
748
|
United Kingdom
|
14
|
Germany
|
10
|
Ireland
|
1
|
Israel
|
1
|
Sweden
|
1
|
Ukraine
|
1
|
Venezuela
|
1
|
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