Chemo treatment number two has been successfully completed at this point, but unfortunately the patient is not doing as well this time around. The "wonder" nausea drugs don't seem to be working as amazingly as they were before. Hopefully her fatigue and nausea will only last 24-48 hours this time. I've NEVER been able to handle my mom being sick-- even with a cold. Clearly, this only got worse after my dad got sick and died but you can add that statement after just about everything in my life.
Again, I believe the reason I hate seeing mom sick is another only child characteristic. Being an only child, your mom is your world. She's your rock for everything. My mom is my best friend and knows 100% of anything that goes in my life (of course I edit those things that I don't think she wants to know...sometimes). I don't think it's a mother daughter thing either.... I know this holds true for male only children-- based on experience. When there's only you, you are the only thing your mother lives and breathes for. There is nothing else. Her life revolves around you. Clearly, all mothers are like that with their children but it's not the same when you have only one to focus on.... it just isn't. I'm a mom to an only child and I can see myself developing these same feelings.
It's difficult to see her like this and makes me wonder what is going to happen in the up coming weeks. Is she going to get weaker? Probably. I don't mean to paint a picture of a gaunt, pale woman who can barely move. To look at her, you wouldn't know she was sick. She looks awesome-- much better than I do right now. So, I continue to pretend to remain positive around her.
Since I mentioned it, let's talk about this "positive attitude" bullshit. Yes, I agree that my mom and the rest of us need to stay positive because a positive attitude is what helps beat this horrific, miserable disease. I'm not a positive person. It's not a big secret but I can't change who I am after 35 years. I have seriously repressed emotion and memories from my dad's illness but as I've mentioned before, I was POSITIVE he wasn't going to die and we were going to add his name to the list of Cancer survivors. That didn't really work out too well for me the first time around so it's hard to rally. Part of the problem with my dad was he thought he was going to die. I don't recall him ever being positive about beating this disease. Overall, dad wasn't a glass is half full kind of guy-- clearly, I'm my father's daughter.
He was a fighter-- and tried hard to beat it but the Cancer was too far advanced that now I begin to think his fight was never going to be strong enough to beat the speed of how quickly the tumors grew and spread. Mom is a fighter too and her attitude is better than dad's was (and mine).
I think last night it just hit me hard for some reason--- and I realized that I am pretty much hanging off a ledge. I've worn myself down already from stress and worrying... literally to the point where I don't want to get out of bed in the morning. My saving grace? My daughter. I know that someone is depending on me now to take care of them so I force myself out of my bed and I face the day with a smile.... until I get to work or go run errands or pretty much any time I'm alone. Then I zone out.
I can't say that I've been curled up in the fetal position crying, but I sit with a blank stare. I literally think my brain is too full with noise to think. In typical only child fashion, I've taken my mom's illness and brought it back to me. It's selfish of me to be sitting here complaining about how sad and tired I am when I'm not the one fighting. It is my worst trait but I have perfected hiding it. I think?
Showing posts with label esophageal cancer. Show all posts
Showing posts with label esophageal cancer. Show all posts
Thursday, August 19, 2010
Monday, August 16, 2010
My Aha! Moment
Since my mom's diagnosis, I've read books and blogs and pamphlets and web pages and everything else you can imagine in order to become the greatest authority on Esophageal Cancer. It wasn't easy to stay away from the statistics (which are bleak) but I focused only on Stage I related information. Since my husband imposed a moratorium on my use of WebMD or even that fun Mayo Clinic site, I was able to gather a great deal of information. My type A personality has completely taken over now--- because there is a BINDER. I have collected articles as well as the literature my mom's team of doctor's have given her. Clearly, she has strict instructions from me to ask for any additional reading material when she sees her doctors. It's good for me to be in the know.
Now, this isn't my first time at the rodeo. I know how this Cancer thing works first hand but I just kept digging to find more information. Then as I was organizing my binder I realized something very important--- I am overcompensating. I don't even think overcompensating fully describes what I'm doing-- I'm going to extremes.
When my dad was diagnosed with Cancer, I was 20 years old. He wasn't going to die because I was too young to have my dad die, obviously. He had to walk me down the aisle right? Dad's don't die before you get married-- because they have to walk you down the aisle. I focused on this a lot... I remember when the doctor gave us the news, I cried because well, that's what you do. But I heard phrases like "Stage IV" and "inoperable" and "spread fast" but then I was told he had an 89% chance of survival. So I focused on this statistic and listened to the doctor's positive attitude. From what I know NOW, Non-Hodgkin's Lymphoma in Stage IV is pretty aggressive. But I was so focused on being positive and know that it was impossible for my dad to die.
I paid no attention to how big the tumor was or how sick chemo was making him. I also didn't think anything about the hair loss... or that he couldn't keep warm.... or that he had to retire... or that he couldn't drive anymore.... or that he wasn't eating. Nope, instead, I went to class or shopping with my friends. On the weekends, instead of going home to visit I partied with my friends because I was 20 and my father wasn't going to die.
Things looked OK for a while.... Then we got the news he was terminal. Hmmph. How can that be possible? He had a 89% chance of survival now they were giving him three months to live. Here I was, getting ready to graduate from college and my dad told me he was going to die. That there was nothing they could do at this point. I truly didn't understand. I kept hope alive that he was going to at least be here for graduation. He was alive but couldn't make it. He died 4 days later.
I blamed everyone around me who knew more than I did. I never understood how sick he really was. The Internet was up and running, so I'm sure I could have found some information but the easiest way would have been to open my eyes and ask questions. I didn't know what to do until it was too late.
Well, I'm much older and wiser now. I ask too many questions and read too much material but I can't be blindsided again. Too much information can be a bad thing --- no doubt about it. I didn't know anything when my dad was sick, which was my own fault so this time around I need to know EVERYTHING. I want to be prepared. My mom has pretty much told me I'm driving her crazy so I know I need to lay off.
My research has paid off in some ways. I now know that Stage I recovery is much better than Stage IV. I hold on to that hope but it's hard to be positive after what I've already lived through. I try to be positive and now that I've had this Aha! moment, then maybe I'll lay off the Internet.... at least for a little while.
Now, this isn't my first time at the rodeo. I know how this Cancer thing works first hand but I just kept digging to find more information. Then as I was organizing my binder I realized something very important--- I am overcompensating. I don't even think overcompensating fully describes what I'm doing-- I'm going to extremes.
When my dad was diagnosed with Cancer, I was 20 years old. He wasn't going to die because I was too young to have my dad die, obviously. He had to walk me down the aisle right? Dad's don't die before you get married-- because they have to walk you down the aisle. I focused on this a lot... I remember when the doctor gave us the news, I cried because well, that's what you do. But I heard phrases like "Stage IV" and "inoperable" and "spread fast" but then I was told he had an 89% chance of survival. So I focused on this statistic and listened to the doctor's positive attitude. From what I know NOW, Non-Hodgkin's Lymphoma in Stage IV is pretty aggressive. But I was so focused on being positive and know that it was impossible for my dad to die.
I paid no attention to how big the tumor was or how sick chemo was making him. I also didn't think anything about the hair loss... or that he couldn't keep warm.... or that he had to retire... or that he couldn't drive anymore.... or that he wasn't eating. Nope, instead, I went to class or shopping with my friends. On the weekends, instead of going home to visit I partied with my friends because I was 20 and my father wasn't going to die.
Things looked OK for a while.... Then we got the news he was terminal. Hmmph. How can that be possible? He had a 89% chance of survival now they were giving him three months to live. Here I was, getting ready to graduate from college and my dad told me he was going to die. That there was nothing they could do at this point. I truly didn't understand. I kept hope alive that he was going to at least be here for graduation. He was alive but couldn't make it. He died 4 days later.
I blamed everyone around me who knew more than I did. I never understood how sick he really was. The Internet was up and running, so I'm sure I could have found some information but the easiest way would have been to open my eyes and ask questions. I didn't know what to do until it was too late.
Well, I'm much older and wiser now. I ask too many questions and read too much material but I can't be blindsided again. Too much information can be a bad thing --- no doubt about it. I didn't know anything when my dad was sick, which was my own fault so this time around I need to know EVERYTHING. I want to be prepared. My mom has pretty much told me I'm driving her crazy so I know I need to lay off.
My research has paid off in some ways. I now know that Stage I recovery is much better than Stage IV. I hold on to that hope but it's hard to be positive after what I've already lived through. I try to be positive and now that I've had this Aha! moment, then maybe I'll lay off the Internet.... at least for a little while.
Is this Italian guilt or just plain, old guilt?
In the last week, I've had some pretty exciting things happen to me. The house we've been building for the past 10 months is ready to become a home. Living in my mom's basement has been.... an experience. Although I appreciate all that she's done, it's not easy to go back home at 34 with your husband and a daughter. The closet of my dreams is complete. It looks amazing and I feel like a much cuter version of Carrie Bradshaw when I stand in it. Only difference will be instead of Manolos, my shoe rack will display Louboutins.
When I thought it couldn't get any more exciting, it did. I was able to book a cabin on the NKOTB cruise for May of next year. I'm not ashamed, I embrace my love for Donnie Wahlberg. Even though I thought it was going to be a once in a life time experience, it turns out this will be my second time going.
And what's the most exciting thing?? My birthday is coming up. Every only child (at least everyone I know) makes a HUGE deal about their birthday. Just because you get older doesn't mean the parties stop. I've been celebrating big on my birthday for years. It's not just a day of celebration.... It's a week... or even a whole month depending on the activities. My mom has always made my birthday the most special day EVER and she has never missed a year. I'm sure this year will be no different.
Here's the problem.... I can't get in the mood to celebrate. I've lost track of how many days until my birthday. I don't even have PLANS for my birthday. Layer that with how I feel terrible I'm moving out of this basement.... Or even taking this cruise. I shouldn't be happy, I should be sad. When my mind starts to wander from worrying about my mom, and I think about what I should be thinking about (ie. plan on how to decorate or what I'll say to Donnie when I see him AGAIN) I feel guilty. Not just a little guilty, but enough guilt that it drives me to the point of tears. I don't have the right to be happy right now-- it's not a happy time. Right?
How can I move out when my mom needs me to take care of her (even though I have been literally kicked out upstairs for being too depressing to look at)? I'm her only child, she needs me and now I'm leaving her. I'm moving only minutes away but it's not the same. When she got sick and needed to go to the emergency room, I was the only one there who could take her.... What happens now if she happens to be alone? It's rare that she is alone but again, what if??
The guilt is terrible.... it eats away at me like a tiny gnat. I really want to be excited about all these things but I feel so selfish. It feels unfair to be happy when I know I should be sad. Don't get me wrong, I'm pretty sad 85% of the time. I try to hide it best I can when I'm in a social environment but I'm sad. Oh and scared, let's not forget scared.
It's hard enough to be an only child and balance this guilt, but with my ethnic background contributing, it's almost unmanageable. I'm probably on the verge of a nervous breakdown of epic proportion. Clearly, I'm my own worst enemy but aren't we all?
When I thought it couldn't get any more exciting, it did. I was able to book a cabin on the NKOTB cruise for May of next year. I'm not ashamed, I embrace my love for Donnie Wahlberg. Even though I thought it was going to be a once in a life time experience, it turns out this will be my second time going.
And what's the most exciting thing?? My birthday is coming up. Every only child (at least everyone I know) makes a HUGE deal about their birthday. Just because you get older doesn't mean the parties stop. I've been celebrating big on my birthday for years. It's not just a day of celebration.... It's a week... or even a whole month depending on the activities. My mom has always made my birthday the most special day EVER and she has never missed a year. I'm sure this year will be no different.
Here's the problem.... I can't get in the mood to celebrate. I've lost track of how many days until my birthday. I don't even have PLANS for my birthday. Layer that with how I feel terrible I'm moving out of this basement.... Or even taking this cruise. I shouldn't be happy, I should be sad. When my mind starts to wander from worrying about my mom, and I think about what I should be thinking about (ie. plan on how to decorate or what I'll say to Donnie when I see him AGAIN) I feel guilty. Not just a little guilty, but enough guilt that it drives me to the point of tears. I don't have the right to be happy right now-- it's not a happy time. Right?
How can I move out when my mom needs me to take care of her (even though I have been literally kicked out upstairs for being too depressing to look at)? I'm her only child, she needs me and now I'm leaving her. I'm moving only minutes away but it's not the same. When she got sick and needed to go to the emergency room, I was the only one there who could take her.... What happens now if she happens to be alone? It's rare that she is alone but again, what if??
The guilt is terrible.... it eats away at me like a tiny gnat. I really want to be excited about all these things but I feel so selfish. It feels unfair to be happy when I know I should be sad. Don't get me wrong, I'm pretty sad 85% of the time. I try to hide it best I can when I'm in a social environment but I'm sad. Oh and scared, let's not forget scared.
It's hard enough to be an only child and balance this guilt, but with my ethnic background contributing, it's almost unmanageable. I'm probably on the verge of a nervous breakdown of epic proportion. Clearly, I'm my own worst enemy but aren't we all?
Saturday, August 14, 2010
Helpless, Party of One
Sadly the miraculous chemo recovery lasts about 6 minutes. Since yesterday, mom's been getting increasingly weak, tired and battling severe stomach upset. She promised to ask for help if she needs it but the problem is, she WON'T ask for help. She won't even be honest about how she feels. When you ask, the response is always, "Oh, I'm just fine." Does just fine mean you sleep for hours at a time? Or that you have no appetite? I think not.
We are berated by her when we ask her what she needs or how she feels. Instead, we just sit there. My daughter is the only thing which appears to bring her some type of happiness but after about 10 minutes, she's too weak to play with her.
I feel helpless..... I want to do what I can to make her feel better but there's nothing I can do, and if there was she wouldn't tell me. I know that part of me is trying to overcompensate for my total absence during my father's illness. Sure, I was away at college but I was less than an hour away. My mom nursed him day and night while I was in Boston having a great time with my friends. I have many, many. many regrets about how I handled my father's illness. I should have done more.
My time here at this house is limited. We're scheduled to move into our new house before the end of the month and now is my time to try and help her. She isn't alone by any means but I feel useless. Even if I could help, let's not forget, she LIES. She is the WORST patient-- but I am sure nurses make the worst patients. They can take care of themselves and they don't need any help. But they're wrong.
It gives me knots in my stomach.... I wonder what's going to happen after her next chemo treatment on Tuesday. My husband tells me I need to stop worrying about things I can't control--- but that's not me. I need to control everything. I'm an only child -- that's what we fucking do. We try to control everything and make it work how we want it to be.
So what are my options? I don't know. I try to be a mom in the midst of all this but I can guarantee if I were to be graded right now I'd get a C... or maybe a C+. I have a great deal of things going on in my life that I should be excited about it but I'm not. I just feel helpless and sad....
We are berated by her when we ask her what she needs or how she feels. Instead, we just sit there. My daughter is the only thing which appears to bring her some type of happiness but after about 10 minutes, she's too weak to play with her.
I feel helpless..... I want to do what I can to make her feel better but there's nothing I can do, and if there was she wouldn't tell me. I know that part of me is trying to overcompensate for my total absence during my father's illness. Sure, I was away at college but I was less than an hour away. My mom nursed him day and night while I was in Boston having a great time with my friends. I have many, many. many regrets about how I handled my father's illness. I should have done more.
My time here at this house is limited. We're scheduled to move into our new house before the end of the month and now is my time to try and help her. She isn't alone by any means but I feel useless. Even if I could help, let's not forget, she LIES. She is the WORST patient-- but I am sure nurses make the worst patients. They can take care of themselves and they don't need any help. But they're wrong.
It gives me knots in my stomach.... I wonder what's going to happen after her next chemo treatment on Tuesday. My husband tells me I need to stop worrying about things I can't control--- but that's not me. I need to control everything. I'm an only child -- that's what we fucking do. We try to control everything and make it work how we want it to be.
So what are my options? I don't know. I try to be a mom in the midst of all this but I can guarantee if I were to be graded right now I'd get a C... or maybe a C+. I have a great deal of things going on in my life that I should be excited about it but I'm not. I just feel helpless and sad....
Wednesday, August 11, 2010
C-Day
It's here. The big day. Chemotherapy is beginning and then she is off to radiation. Both treatments will be going on simultaneously. Although Chemo is only once a week, radiation is EVERY DAY. The next 6 weeks cannot go by fast enough. Since I am 35 and live in her basement, every morning I go up stairs before I leave for work to kiss her good bye (clearly I'm Italian).
Walking up the stairs to see her I felt my heart in throat as I didn't know what to expect. Was she going to be a wreck like I AM? Was she going to be silent and scared? Or even worse, crying? (if there is one thing I can't handle, it's seeing my mom cry. It breaks my heart into a million pieces). But, Um, NO. I didn't encounter any of that. Instead, there she was packing a snack, making sure her Kindle was charged and getting ready to iron her clothes (yes, my mom is the only person who doesn't go in lounging clothes for chemo I'm sure). With a big smile, I got my normal, "Good Morning Princess. How did you sleep?" as if it were any other Wednesday. It was as if she was getting ready for a day of errands--- not a day of having poisonous chemicals being pumped through her. It was at that moment I decided, my mom is the bravest woman I know and I can only aspire to more like her.
Today, SHE is MY inspiration to remain calm and stay positive. I have mounds of guilt not being there with her but next week it's my turn. For weeks I thought she was putting up a front of being brave and positive but it's not a front--- it's real. She knows she is going to beat this and I need to join that club. Seriously, if she's not scared, then why am I? When I left for work, I wished her luck and told her I loved her--- like I do everyday. Today I will think of the big hug she gave me, because for a split second, I felt like everything was going to be all right.
I can't lie, today I wish I had a brother or a sister that I could call to share this burden. I've never regretted being an only child except for now and when my dad died. Maybe it would be nice to have an older sibling to sit and hold my hand while we cry together or even encourage one another to stay positive.
I am working today and it will be tough but I am surrounded by amazing co-workers and a truly understanding manager which may help. My intention is to keep busy here and start to focus on the exciting events coming up over the next few weeks.
Walking up the stairs to see her I felt my heart in throat as I didn't know what to expect. Was she going to be a wreck like I AM? Was she going to be silent and scared? Or even worse, crying? (if there is one thing I can't handle, it's seeing my mom cry. It breaks my heart into a million pieces). But, Um, NO. I didn't encounter any of that. Instead, there she was packing a snack, making sure her Kindle was charged and getting ready to iron her clothes (yes, my mom is the only person who doesn't go in lounging clothes for chemo I'm sure). With a big smile, I got my normal, "Good Morning Princess. How did you sleep?" as if it were any other Wednesday. It was as if she was getting ready for a day of errands--- not a day of having poisonous chemicals being pumped through her. It was at that moment I decided, my mom is the bravest woman I know and I can only aspire to more like her.
Today, SHE is MY inspiration to remain calm and stay positive. I have mounds of guilt not being there with her but next week it's my turn. For weeks I thought she was putting up a front of being brave and positive but it's not a front--- it's real. She knows she is going to beat this and I need to join that club. Seriously, if she's not scared, then why am I? When I left for work, I wished her luck and told her I loved her--- like I do everyday. Today I will think of the big hug she gave me, because for a split second, I felt like everything was going to be all right.
I can't lie, today I wish I had a brother or a sister that I could call to share this burden. I've never regretted being an only child except for now and when my dad died. Maybe it would be nice to have an older sibling to sit and hold my hand while we cry together or even encourage one another to stay positive.
I am working today and it will be tough but I am surrounded by amazing co-workers and a truly understanding manager which may help. My intention is to keep busy here and start to focus on the exciting events coming up over the next few weeks.
Tuesday, August 10, 2010
Is this a bad dream or really my life?
Picture it, May 1997. I'm 21 years old and instead of off celebrating my recent college graduation by backpacking through Europe or driving around in my new car, I'm burying my father. You hear the words Cancer and at 21 you never think it's something that will take away your mom or dad. It's a disease that takes your grandparents or your elderly aunt, not your 48 year old father. Hands down, it was the worst experience of my life. I always new someday I'd bury my father but not before I graduated law school. Not before I got married. Not before my first child was born. Over 13 years, I've learned how to stop crying and remember the good times. Not a day goes by that I don't miss my dad, but the difference is, I feel like I have my own personal guardian angel.
Flash forward to July 2010. I come home, which is currently a basement at my mom's while we build a house, only to hear from her that she has Cancer. My first reaction is WHAT THE FUCK. How can this be possible? Did I piss off someone in a past life? Is that why I am being forced to deal with this Cancer nonsense again? As close as I was to my dad, my mom is my best friend. I live with her but I still talk to her at least 4 times a day while I'm at work. She's the first person I call when I have good news.... bad news... or even better, gossip. Immediately I started thinking, what am I going to do without her? I have an amazing husband and beautiful daughter.... but they're not my mom. Who is going to be my mom? Once she goes, I'm all alone. I'm surrounded by people (family and friends) but at the same time I am all alone. I don't have a brother or sister to lean on or share my thoughts with on this.
If I cry, I cry alone. After my experience with my father, I learned to suppress my feeling for fear of upsetting those around me. Everyone is telling me, you have to be strong for your mom and for Avery and David (her husband). But, I can't be. I'm sad. I'm angry. I WANT to cry. I want to be angry and be pissed off. This is unfair. I know I may sound like a selfish brat but I want someone to hold me and tell me it's going to be OK. The one person who used to do that was my mom and I can't go to her.... I have to continue with the facade of "You're going to be fine and we're going to beat this!!!" Problem is, I'm a glass empty kind of girl.
The diagnosis: Stage I esophageal cancer. It hasn't spread to the lymph nodes and the PET scan is clear of any other cancer. Best news is this tumor is completely operable. All good news right??? I wish I could stop thinking of the "what ifs." I don't want her to be sick. I don't want her to die. I'm not ready for that. Losing my father at a young age was enough. I'm full for now. Having tragedy strike the same family twice seems unnatural and against the odds.
I find solace in the fact that my dad was Stage IV Non-Hodgkin's Lymphoma which is completely inoperable. My mom's Cancer is everything my dad's wasn't. As an only child, you can only depend on cousins, friends, husband, etc for so much. They don't understand--- even though they try so very hard.
Hopefully this blog will reach other only children that can relate. It would be nice to know I'm not alone. Right now, all I can do is take it one day at a time.
Flash forward to July 2010. I come home, which is currently a basement at my mom's while we build a house, only to hear from her that she has Cancer. My first reaction is WHAT THE FUCK. How can this be possible? Did I piss off someone in a past life? Is that why I am being forced to deal with this Cancer nonsense again? As close as I was to my dad, my mom is my best friend. I live with her but I still talk to her at least 4 times a day while I'm at work. She's the first person I call when I have good news.... bad news... or even better, gossip. Immediately I started thinking, what am I going to do without her? I have an amazing husband and beautiful daughter.... but they're not my mom. Who is going to be my mom? Once she goes, I'm all alone. I'm surrounded by people (family and friends) but at the same time I am all alone. I don't have a brother or sister to lean on or share my thoughts with on this.
If I cry, I cry alone. After my experience with my father, I learned to suppress my feeling for fear of upsetting those around me. Everyone is telling me, you have to be strong for your mom and for Avery and David (her husband). But, I can't be. I'm sad. I'm angry. I WANT to cry. I want to be angry and be pissed off. This is unfair. I know I may sound like a selfish brat but I want someone to hold me and tell me it's going to be OK. The one person who used to do that was my mom and I can't go to her.... I have to continue with the facade of "You're going to be fine and we're going to beat this!!!" Problem is, I'm a glass empty kind of girl.
The diagnosis: Stage I esophageal cancer. It hasn't spread to the lymph nodes and the PET scan is clear of any other cancer. Best news is this tumor is completely operable. All good news right??? I wish I could stop thinking of the "what ifs." I don't want her to be sick. I don't want her to die. I'm not ready for that. Losing my father at a young age was enough. I'm full for now. Having tragedy strike the same family twice seems unnatural and against the odds.
I find solace in the fact that my dad was Stage IV Non-Hodgkin's Lymphoma which is completely inoperable. My mom's Cancer is everything my dad's wasn't. As an only child, you can only depend on cousins, friends, husband, etc for so much. They don't understand--- even though they try so very hard.
Hopefully this blog will reach other only children that can relate. It would be nice to know I'm not alone. Right now, all I can do is take it one day at a time.
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