Monday, May 11, 2015

Why

You answer me!!! You tell me why a Christian God is would make my sweet mother suffer?! Why would he let her be scared? Why would someone worship a God who would let innocent children and mothers die from a horrible disease, send fathers to war? Abuse the elderly? I don't understand? If anyone wants to know why I'm not Christian but I'm a good moral person, the above is part of my answer!!

Saturday, May 9, 2015

Sitting here

As I sit here in the hospital with my mom as she sleeps, I cherish every moment. I realize every moment of anger and resentment are wasted emotions. I might have months, weeks or years but I'm not going to waste them mad at my mom. She hurts, she has problems breathing and she has cancer. How she deals with it is her own. I am just going to stand with her and be there. I'm not saying it's going to be easy but that is my decision. 

Monday, May 4, 2015

Never ending guilt

There are appointments in Nashville tomorrow that I can't attend due to work and my own Drs appts. They are not anything out of the ordinary, not any biopsys, ct scans or anything but my dad feels calmer when I'm ther so I feel like shit that I can't be there. There is no winning at this situation. 

Good days and bad days

There are good days and there are bad. Mom did really well for about a week. She went walking along Riverside without her wig, which made me cry with happiness sine those who are active and moving show better recovery rates. But this past weekend she was in a lot of pain and stayed in bet with her oxygen on, seeming to slip Bach again. It's very disheartening. Dad said she is having more trouble breathing and talking about getting her a wheelchair for her Drs visits. I'm not sure how I feel about that. It upsets me but I see the logic in it. I feel like I have moved to the point where I have disassociated myself from her illness and just do what needs to be done otherwise I will not be able to function. I don't think I have any other choice.

Friday, April 17, 2015

Downhill

So what do you do when someone is gone but they're still here? Physically, she's not doing awful. The tumor has not spread but has not shrunk. She is in constant pain so she is on strong pain melds to help control the pain. Her oxygen levels have dropped so now she is in an oxygen tube when needed. They have found two blood clots in her good lung so she has to inject herself with Medes to bust up the blood clots. 
She acts very withdrawn from everything, including the family. She sleeps a lot which I know is a defense mechanism but as her daughter makes me angry. I want my mom to get mad and act like she's fighting. Instead she lets dad baby her (because he does not know what else to do) and whimpers around. I shouldn't be mad but my mom is already gone. She's withdrawn from the world, family, everything but is still here. She might as well be gone. 
I realize what makes me angry and it's the victim role she puts herself in. She is acting like a "victim of cancer". I want her to be a fighter, the mom I've seen fight all my life but not lately. It's a fine line I walk, I can't get mad at her and avoid her but if I'm around her and she acts meek then I get angrier. 

Thursday, March 26, 2015

Always something

You go through a constant riot of emotions every day. You are there for your family member who actually has cancer, they need you. They have the right to be depressed, mad, sad, and feel every emotion out there so you need to be sympathetic and let them. When I have emotions my husband tries to understand but he doesn't get it. He doesn't see my mom falling apart, my dad watching the destruction of his wife and marriage, my sister holding it all together with them living in her home and sister 3 and 4 coping fron out of state. He doesn't feel the pressure of keeping my moms spirits up. He doesn't feel the weight of knowing the tumor has grown a little and in reading all the literature (not Internet jargon) and realizing what the future holds with lung cancer, that I am feeling in pieces. I try to talk to him but he doesn't get it. But in his defense I'm not the best at communicating my own feelings. As soon as he shows any misunderstanding I shut down. I talk to sister number two but I try not to overwhelm her since she is married a year, new baby and has my parents in her home. She is a saint. I try to help but there is little I can do. When the weather warms up I can get dad out of the house more and that will help.

Wednesday, March 18, 2015

As David Bowie said "ch..ch..changes"

So the tumor has grown a little bit.  We were given the news yesterday that is has grown a little but has not spread.  Now they can do a biopsy and tailor make chemo to target her tumor so that it does not kill all her cells, just the tumor.  She should not lose her hair this time.  The problem is mom is already so negative we are fighting such a battle with her anger and need to isolate.  She doesn't want to talk and when she does is such false optimism I just want to grind my teeth.  Then yesterday sister # 2 and I had to call sister 3 and 4 and give them the news.  We tried to make it sound as positive as possible but how do you make it sound good that a tumor that is getting a good treatment has grown a little in 3 months sound good??  Sister 3 took it hard.  She tried to sound ok but it didn't work.  I feel like shit that I can't help, but there is no making this ok.  Our family is changed forever.  My dad is on a breaking point.  I don't know how much more he can take.  Poor sister #2 has mom and dad living with her and her new husband and 11 week old baby.  That is a strain I hate that she has to put up with.  We all put on a face of being ok.  People as about mom and I say "she's doing ok" because they don't really want to hear the whole story and I don't want to tell it.  Even my husband doesn't want to hear it, even though he asks.  It I start to talk he jumps in with positive crap and doesn't just let me talk.  Sometimes I just need to talk.  Even if I jump to negative conclusions, say the wrong thing, talk about things that hurt or talk about things that could go wrong but never will I just need to say it.  But I can't.  Everyone want's to cut you off and push the positive.  Even I do it with mom and I realized that yesterday.  I promised myself to stop and let her say what she needs to say from this point on.  It's not fair to her to keep pushing the positive when she might just need to get the ugly out.

Wednesday, March 11, 2015

Never good news, even when it's good

Even though things are going well in regards to the tumor my mom still acts defeated. She had the drainage tube removed because the tumor has stopped producing fluid. This is a good thing. She is in pain, thinking the tube left scar tissue around her nerve. She hurts and has blood pressure problems. Now we deal with her pain, anger and disappointment. Nothing seems to make her happy so interacting with her is hard. I watch my dad becoming bitter that she is not pulling through this but I can't say I wouldn't withdraw if it were me. You never know. They both believe deep down that she's dying, mom and dad have both made statements to the fact that she's "a dying woman" at one time or another. Never around each other of course. As a daughter this hits you in the gut and is hard to recover from. Even in correcting them I can see they believe it. I and my sisters remain optimistic, hearing the Drs good news and latching onto it. We talk about moms negativity and how to change it. The fact is, we can't.

Thursday, February 12, 2015

Every step is a struggle

Everyday something happens, moms emotions are up and down so it is a constant job to keep her spirits up. We have to make sure dad is emotionally well too. This is wearing them both down which means my sisters and I have to work harder to instill hope. If there is the smallest setback they refuse to see the positive no matter how we try. Keeping their spirits up and making sure they don't slide deeper into depression is a full time job. That's ok because we are their girls and we will always be there for them. We are lucky enough that us sisters are close enough that we can lean on each other. I feel like it's hard to process what is going on for myself. I talk to my husband and he's sympathetic and listens but it's never right. I don't know what I want him to say and I guess nothing will be what I want to hear. 
I get tired. Tired of trying to cheer my parents, tired of the constant emotions on top of everyday life I walk around with and tired of not knowing how to express my anger, grief and heartbreak. 
I will never lose hope but I want one day like it used to be before her diagnosis. 

Sunday, February 8, 2015

Changes all the time

Riding with my mom in the car, seeing how such a small task tires her out is difficult. She has always been so active, always moving but able to sit down and relax. Now, even when she's sitting, she does not seem to truly relax. She is always anxious and living with the burden of lung cancer. It has invaded everything she does. I see this and hurt. My sisters see or hear it when they talk to her and they hurt. I can't help them. I don't know how. My #3 sister (there are 4 of us) lives on the west coast and her way of dealing is withdrawing from life. She is very dependent upon my mom and this has broken her heart. I don't know how to help her. I will make sure I call more often. I'm a bad big sister, I have not called enough. 

Tuesday, February 3, 2015

It will not end

Today was another infusion of meds and follow up. My dad sends a text they are waiting for the dr, the doc is running behind. We don't hear anything else for hours great, this is when your face of normality starts to slip. My anxiety sky rockets, my imagination starts telling me that something is wrong and they don't want to tell me and my sisters. I start texting mom, dad, the family group, desperately asking what happened at the appointment. I feel like I can't breathe because if it's bad news I have to make sure mom can emotionally handle it, I have to watch my dad and sisters, makes sure they are ok. I get a text from the second sister, who lives here, that nothing has changed. Everything is ok.
She then sends a message to me and my two other sisters alone and said the only different information today was dad asked about remission and the dr had to explain with lung cancer there is no remission. They continue to treat the tumor like a chronic disease. Meaning it will never go away. We will live every day wondering when the medicine will stop working and her tumor will either spread or grow again. I understood this from my research from the beginning but now I have to watch my parents and sisters as they learn this news and absorb this information. I hate that they have this worry.

Monday, February 2, 2015

The struggle to stay normal

Every day I play normal.  I text or call my mom to see how she is doing.  Today the tube in her side is still hurting and she admitted she had to take some strong pain meds her dr prescribed because it hurt so bad.  This is a big thing for my mother to admit because she does not want anyone to know how much she hurts.  So I can't acknowledge her pain.  I have to pretend this is a normal, everyday thing.  I do suggest she call her dr because it's been hurting for days but she sees the dr tomorrow so she will not call today unless she starts bleeding profusely from her side.  I have to pretend she isn't hurting and her pain does not hurt me.  I don't talk about this with my spouse because how much does he want to hear everyday about how my mom hurts or how I feel while she struggles with cancer.  I'll be honest.  I don't know how I feel.  I've never been great with talking about my feelings anyway.  I don't know if i'm mad, sad, depressed, in denial...what.  What am I?  I'm chugging along.  That's what I am.

Sunday, February 1, 2015

Day by day

The tumor has not shrunk but it has not grown either. That is the news that is neither good or bad. The good news is my mom found some fight when she found out her hair will grow back with the after treatment. Her spirits lifted which made me feel good. She also has fluid which builds up on her lungs from the tumor so the treatments are hopefully stopping that too. If the fluid stays below a certain level so many times she can get the tube removed from her chest. My dad sent a text that mom had fight in her when she really tried to drain a lot of fluid one day. I cried spontaneously and hard for about 5 minutes. I cried with relief, grief and for my mom that there is still fight in her. Family walks rights beside the Cancer patient. Don't let anyone tell you otherwise.

The Fight

Now she has had her four chemo treatments and gone through the trauma of losing her hair.  She gets sick the week after her chemo and then bounces back slower each time.  But in writing and thinking about this I am not writing about her fight as much as I am writing about my families fight.  Hers is her own to tell.  I watch as my dad hovers over my mom, scared to lose a moment with her so he even lays down with her when she feels bad.  I watch as my sisters worry about my mom when she feels bad or depressed, working hard to bring her spirits up.
 We are a close family and my heart breaks when my mom tells me she is only fighting because of us girls.  I see her fight leaving her each time she hurts after her treatment, each time she becomes angry that she cannot physically do the things she wants to because she gets tired or her joints hurt.  I get mad that she isn't mad enough to fight for herself, that she seems so passive and is letting this happen without getting angry.  I want her to be ferocious and fight like I know she can but it seems like she is accepting a death sentence.  I am angry at her for this but I will never tell her this.  We all do what we can to act normal around her, to make things as normal as possible without making her mad.  It's a strain but we make it work for the moment.  Tomorrow we find out if the tumor has shrunk with the chemo.  We will see how it goes from there.

The move to Tennessee

 Within a week they had moved and were now living with my sister and her husband waiting for their house to sell.  Now living in Tennessee she went to Vanderbilt saw the doctor, got her PET scans, got her CT scans blood drawn and consulted with the doctor on the best form of treatment.   She was to undergo four rounds of chemotherapy at eight hours per round and then have after treatment until the tumor goes away or stops responding and she has to change treatments.  She is to go to treatment every three weeks.

The shock wore off

After getting back to my parents home we mobilized into action.  I told my mom there was no way she way going to sit back and take that Drs crap, Vanderbilt was close to me and one of my sisters who recently moved to Clarksville and they did trials all the time. We  looked up hospitals that were good at treating lung cancer and luckily Vanderbilt was 29th on the list.  There were none in Virginia.  We got the number to Vanderbilt, mom called and started having her records moved to Vanderbilt.  Within a week they had packed up their home and moved to Tennessee.  There is no way we are going to let my mother go without every fight. Fuck that.

The first Drs appointment

We went to the oncologist to find out the results of her ct scans and blood work.  My mom and dad went back with the dr first to the the news before letting us girls go and hear the news, good or bad.   The Dr. smiled and told us mom has stage 4 lung cancer.  It was in her liver, lymph nodes and lung.  Her chances of survival were 4 in 100.  As the Dr. gave us the news she had an affect that was different from her information. She was smiling and pleasant.  My mom kept telling us it was ok, that we would be alright.
We all walked out while mom was making her next appointment and just hugged each other and cried.  The Dr. had given use a death sentence for my mother.  There is no explaining the shock of hearing your mother in going to die in the next year or so.
The drive home was quiet and somber, each of us lost in our thoughts.  I thought, fuck this, I'm not losing my mom this easy. There has got to be something we can do.

The breach of the family wall

We found out on September 3rd, 2014 that cancer had invaded our family. My mother was told she had a tumor on her lung. My dad was out of the country and my siblings and I lived states away. We all immediately went to Virginia where my parents lived and gathered as a family. My father flew in and we were determined to find out the details together. We have always been a strong family unit and we were not going to change that now.