So I go home Tuesday night, have a really good cry on my husband's shoulder and go to sleep. We are meeting with the social worker at 8 the next morning at mom's.
At 1:47 am, I sit straight up in my bed out of a dead sleep. Mom died. I just knew it. I checked my phone. No missed calls or messages. I lay back down, still knowing she's dead. I figure I'll wait a few minutes for everyone else to figure out she's dead. Pretty soon, I am back to sleep. Super fucked up.
So, I wake up, get to mom's at 8 and she was sleeping. I guess she got dad up at 3 am and they had been up since then. I brought dad some coffee and pretty soon Kasey, the social worker and mom's nurse were all there. It was the day to work out the calendar of caregivers.
It was actually nice to sit around the table with the team and to chat and learn about how Hospice works, what we should expect, what they can do to help us, etc. Instead of filling out the whole calendar, we decided that the family members that we've asked to help will all come over on Saturday and sign up for times. That way they can see the new layout of the home and get some tips on what to do for mom.
The new layout of the home? That would be a hospital bed, toilet and wheelchair in the family room. Yeah. We're there. It just make the most sense to have her in a bed rather than the couch. This is just so reminiscent of grandma Perkins to me. I remember her house and the hospital bed. And then I remember she died not too long after that. Not the most pleasant of all memories.
All of the medical equipment was being delivered yesterday, I am headed to mom's right after work. I am trying to get my mind right so that I am prepared when I go into the house - 1. for mom's appearance 2. for that damn hospital bed.
Oh, and in the mix of everything, I had to ask my two BFF's to be our witness on mom's will and POA. Having someone outside of the family see her paperwork just felt creepy to me. I mean, Anne and Sue don't care, but it was weird for me.
So, I am probably missing a lot, but those are the highlights. I just can't believe we are here. She has gone downhill so fucking fast. I feel so bad for her. It is crushing to see your mom like this....miserable, drugged up, out of it. It's crushing to see my dad being so crazy and out of control and freaked out. I can barely take it, but what the fuck choice do I have?
Thursday, August 29, 2013
Hard to keep up...Part 1
the blog when everything is happening at lightening fast pace. So, I guess this is the update as I have it:
Monday, based on my work emails, it looks like I was here the whole day (it's awful that I simply cannot recall this information). The MOMENT I stepped outside of work, Katie called me crying saying that she had been calling around all day looking for home health care for mom, but that it was going to run us about $2,000 per week. I was on the phone with her for about the first half hour home and then on the phone with Hospice for the last half hour. It was determined that our family would meet with the social worker, Angelique, Wednesday to talk about our care options for mom.
Tuesday, again I worked all day, but went over to mom's directly after work. Katie told me that mom fell that day and I decided that I needed to go over there and see what was happening. As dad says, she didn't fall, she "buckled." Going down one freaking step into the family room. When I got to mom's, it was just awful. Dad is stressed to the hilt, mom looked like a sad, brittle woman. It almost hurts to look at her, I just don't know how her frame is so small. So very, very small.
She started to ask me something and it was quickly apparent that I could not hear her. Like, I had to put my ear next to her mouth to hear her. As the nurse later explained, mom is so weak that she can't get the air exerted past her vocal chords to really make a sound. I felt like I was treating her like Colin. When I don't understand him, I just shake my head and say "yes." So I did that once with mom and she asked why I wasn't answering the question. Then I really leaned in to find out that she was asking me how much longer they expect her to live like this. And my response was, for as long as you have a flicker of hope. What else was I supposed to say? I can't imagine living how she is living right now.
So, at one point, mom was sitting up on the couch and I was right next to her. All of the sudden, she places her fists on the couch and tries to push herself up. I then tried to get up to help her.....and had a huge, stabbing contraction/vagina pain. I was literally stuck. Dad sees what is happening and flips the fuck out. He starts screaming at me to GET HER. DON'T LET HER STAND. He runs over, pushes the coffee table out of the way and grabs on to mom who is standing by now. He just keeps yelling. I tried to tell him that I was having a contraction, but he was out of his goddamn mind. I know he was just worried, but man, it was overboard. Right in that second, I knew that I was going to be no help to mom. She may be dying, but she is a fast mama jamma. My mom does not want to be held down.
So, after a couple more yells from dad and some kisses to mom (she did stroke the back of my hair for a bit...her nails are a little long and it honestly felt really nice to have that touch interaction with her).
So that was Monday and Tuesday. I'll make a separate post now for Wednesday, I feel like this is getting to be a book!
Monday, based on my work emails, it looks like I was here the whole day (it's awful that I simply cannot recall this information). The MOMENT I stepped outside of work, Katie called me crying saying that she had been calling around all day looking for home health care for mom, but that it was going to run us about $2,000 per week. I was on the phone with her for about the first half hour home and then on the phone with Hospice for the last half hour. It was determined that our family would meet with the social worker, Angelique, Wednesday to talk about our care options for mom.
Tuesday, again I worked all day, but went over to mom's directly after work. Katie told me that mom fell that day and I decided that I needed to go over there and see what was happening. As dad says, she didn't fall, she "buckled." Going down one freaking step into the family room. When I got to mom's, it was just awful. Dad is stressed to the hilt, mom looked like a sad, brittle woman. It almost hurts to look at her, I just don't know how her frame is so small. So very, very small.
She started to ask me something and it was quickly apparent that I could not hear her. Like, I had to put my ear next to her mouth to hear her. As the nurse later explained, mom is so weak that she can't get the air exerted past her vocal chords to really make a sound. I felt like I was treating her like Colin. When I don't understand him, I just shake my head and say "yes." So I did that once with mom and she asked why I wasn't answering the question. Then I really leaned in to find out that she was asking me how much longer they expect her to live like this. And my response was, for as long as you have a flicker of hope. What else was I supposed to say? I can't imagine living how she is living right now.
So, at one point, mom was sitting up on the couch and I was right next to her. All of the sudden, she places her fists on the couch and tries to push herself up. I then tried to get up to help her.....and had a huge, stabbing contraction/vagina pain. I was literally stuck. Dad sees what is happening and flips the fuck out. He starts screaming at me to GET HER. DON'T LET HER STAND. He runs over, pushes the coffee table out of the way and grabs on to mom who is standing by now. He just keeps yelling. I tried to tell him that I was having a contraction, but he was out of his goddamn mind. I know he was just worried, but man, it was overboard. Right in that second, I knew that I was going to be no help to mom. She may be dying, but she is a fast mama jamma. My mom does not want to be held down.
So, after a couple more yells from dad and some kisses to mom (she did stroke the back of my hair for a bit...her nails are a little long and it honestly felt really nice to have that touch interaction with her).
So that was Monday and Tuesday. I'll make a separate post now for Wednesday, I feel like this is getting to be a book!
Monday, August 26, 2013
Three years today
Three years ago today, mom called me and told me the the doctor thought she may have breast cancer. Three years ago at this very moment, I was sitting a work, excited to go to my first Browns pre-season game with my hubby. At just about 7:30 p.m. was when I took the call from mom. Three years later and Hospice is at my mom's side. Ain't that a bitch?
I can't believe it's only been three years. I barely remember my life before breast cancer. If I think hard enough, my mom was annoying...always talking too much, always asking too much. Now she can barely speak above a whisper and is so involved with her disease that she can't talk about anything else. Three years ago, mom was an involved grandma of two grand daughters. Now she is a reclusive grandma of soon-to-be five, who wouldn't have the energy to chat with the girls if you paid her.
Now, I don't want people to think I am bashing my mom with this...I'm not. This is the truth. Mom would give anything to be the mom and grandma she was. Cancer stole that. Took it. Gone. It really makes me mad and upset.
This weekend was rough. All day Saturday I was waiting for a phone call about mom, someone to tell me how she was doing. Dad texted that she pooped (yay!) but that he wished she would have pooped more. I nested on Saturday.
Sunday, around 1, my phone starts blowing up. Mom wants to go to Hospice House and be admitted. She can't breathe, she thinks they'll fix her.
My sisters and I show up to mom's, the Hospice nurse is already there. It's been determined that they'll give mom Adavan to calm her, thereby letting her breathe a little easier. I was there for almost 4 hours, sitting in a warm house, chatting with my sisters, looking at my mom's boney frame and sunken in face. Is this really where we are just three years later? Really? It's hard to comprehend.
Today the nurse was to come by at 1:00 and I am still waiting to hear how that went. My poor dad fields so many phone calls, I hate to bother him. I want to know what she thinks/said. I still don't think mom is dying RIGHT NOW, but I know we can't go on forever like this. Will I have the baby before she dies? Is that selfish? How am I going to handle everything? I guess time will tell. This blows.
I can't believe it's only been three years. I barely remember my life before breast cancer. If I think hard enough, my mom was annoying...always talking too much, always asking too much. Now she can barely speak above a whisper and is so involved with her disease that she can't talk about anything else. Three years ago, mom was an involved grandma of two grand daughters. Now she is a reclusive grandma of soon-to-be five, who wouldn't have the energy to chat with the girls if you paid her.
Now, I don't want people to think I am bashing my mom with this...I'm not. This is the truth. Mom would give anything to be the mom and grandma she was. Cancer stole that. Took it. Gone. It really makes me mad and upset.
This weekend was rough. All day Saturday I was waiting for a phone call about mom, someone to tell me how she was doing. Dad texted that she pooped (yay!) but that he wished she would have pooped more. I nested on Saturday.
Sunday, around 1, my phone starts blowing up. Mom wants to go to Hospice House and be admitted. She can't breathe, she thinks they'll fix her.
My sisters and I show up to mom's, the Hospice nurse is already there. It's been determined that they'll give mom Adavan to calm her, thereby letting her breathe a little easier. I was there for almost 4 hours, sitting in a warm house, chatting with my sisters, looking at my mom's boney frame and sunken in face. Is this really where we are just three years later? Really? It's hard to comprehend.
Today the nurse was to come by at 1:00 and I am still waiting to hear how that went. My poor dad fields so many phone calls, I hate to bother him. I want to know what she thinks/said. I still don't think mom is dying RIGHT NOW, but I know we can't go on forever like this. Will I have the baby before she dies? Is that selfish? How am I going to handle everything? I guess time will tell. This blows.
Thursday, August 22, 2013
Hospice
Hospice has been called in for mom's care. Hospice. Let that soak in. I don't think it's even begun to soak in for me....it's like it moisture on my skin that just won't seep in. Hospice.
At Tuesday's oncology appointment, Dr. G. walked into the room, gasped, and said "Oh my." That's all it took, I knew this treatment was over. To be honest, I knew it was over before we went, but it's still a kick in the guts.
Mom was so sick at the appointment. Down to 107, came into the office in a wheelchair, looking very frail and forlorn. Tired as hell, voice was scratchy and just looked overall miserable. It was very apparent that we needed interventions higher than the Clinic. The draining of the lung obviously did not do the trick, as a matter of fact, we found out that they LEFT a liter of fluid in her lung! A full liter. Unbelievable.
So, Dr. G. explained pallative care and we eased into the hospice conversation. I took the lead when he was done and said that that is the route we wanted to go. Everyone agreed. It was weird to be the person in control, "putting" my mom in Hospice. I wonder if that is a decision I will come to regret or rejoice in.
After that, the wheels were in motion. He explained that there is an appetite stimulant that mom can get on and that Hospice can give us for free. In our minds and hopes, Hospice is a way for mom to get her strength back so that she can continue treatment. I want that to happen so, so bad.
Wednesday we met with the caseworker and today an assessment nurse came in. Tomorrow, her regular nurse will take over and she'll be in once per week, but we have access 24/7.
I've told some friends and co-workers and now I just want to talk to the people I want to talk about it. I feel myself withdrawing, but that's okay. This next month, it's going to be all about taking care of this baby, me and my mom. I need to get through the next 30 days, have this baby and then re-assess. Here's to hoping for a painless 30 days.
At Tuesday's oncology appointment, Dr. G. walked into the room, gasped, and said "Oh my." That's all it took, I knew this treatment was over. To be honest, I knew it was over before we went, but it's still a kick in the guts.
Mom was so sick at the appointment. Down to 107, came into the office in a wheelchair, looking very frail and forlorn. Tired as hell, voice was scratchy and just looked overall miserable. It was very apparent that we needed interventions higher than the Clinic. The draining of the lung obviously did not do the trick, as a matter of fact, we found out that they LEFT a liter of fluid in her lung! A full liter. Unbelievable.
So, Dr. G. explained pallative care and we eased into the hospice conversation. I took the lead when he was done and said that that is the route we wanted to go. Everyone agreed. It was weird to be the person in control, "putting" my mom in Hospice. I wonder if that is a decision I will come to regret or rejoice in.
After that, the wheels were in motion. He explained that there is an appetite stimulant that mom can get on and that Hospice can give us for free. In our minds and hopes, Hospice is a way for mom to get her strength back so that she can continue treatment. I want that to happen so, so bad.
Wednesday we met with the caseworker and today an assessment nurse came in. Tomorrow, her regular nurse will take over and she'll be in once per week, but we have access 24/7.
I've told some friends and co-workers and now I just want to talk to the people I want to talk about it. I feel myself withdrawing, but that's okay. This next month, it's going to be all about taking care of this baby, me and my mom. I need to get through the next 30 days, have this baby and then re-assess. Here's to hoping for a painless 30 days.
Friday, August 16, 2013
A 2-Liter of Pop
That is what was drained out of mom this morning. Nearly two liters of fluid out of one freaking lung. I am really hoping that it gives her some massive relief SOON.
So, it's only been a mere four days since I posted, but of course hell has kinda broken loose.
So, we go to the radiologist on Tuesday (8/13). Besides this guys super awesome head of hair, he was also a super awesome guy. HE is the reason why mom had her procedure today. We went in to get ideas for radiation and instead he wanted to get mom out of pain....THANK YOU! He did give us a few options for radiation and we left him to chat with the pulmonologist and oncologist. The really great thing about this appointment was that we found out that the two spots on mom's brain are tiny - 4mm and 6mm. Good news!
So we wait until Wednesday evening to hear back from Dr. G. and from what I gather from my dad, who was talking in front of my mom (as we all know, that is not a good thing) Dr. G. called mom and basically told her that he wasn't sure if we should go through with radiation since there is so little brain involvement. EEERRR. Try again. Anytime we let mom's cancer breathe for one moment, it spreads like wildfire. And then I guess he told her that he wasn't sure about continuing treatment. So, an appointment has been made for 8/20 for our WHOLE FAMILY to go in and talk to the doctor. He hasn't failed us yet, and if he does recommend to take her off of treatment, we need to decide this as a family and be fully informed. Novel idea, huh?
BREAKING NEWS! My dad just called and my mom is already on her way home. He says that she is doing and feeling 100% better! Yay! Don't put all your eggs in one basket! Yay! The sky is falling! I obviously don't know how I feel right now. I am hoping this sticks for a bit. I am hoping to see some pep in her step. Fingers crossed.
So, it's only been a mere four days since I posted, but of course hell has kinda broken loose.
So, we go to the radiologist on Tuesday (8/13). Besides this guys super awesome head of hair, he was also a super awesome guy. HE is the reason why mom had her procedure today. We went in to get ideas for radiation and instead he wanted to get mom out of pain....THANK YOU! He did give us a few options for radiation and we left him to chat with the pulmonologist and oncologist. The really great thing about this appointment was that we found out that the two spots on mom's brain are tiny - 4mm and 6mm. Good news!
So we wait until Wednesday evening to hear back from Dr. G. and from what I gather from my dad, who was talking in front of my mom (as we all know, that is not a good thing) Dr. G. called mom and basically told her that he wasn't sure if we should go through with radiation since there is so little brain involvement. EEERRR. Try again. Anytime we let mom's cancer breathe for one moment, it spreads like wildfire. And then I guess he told her that he wasn't sure about continuing treatment. So, an appointment has been made for 8/20 for our WHOLE FAMILY to go in and talk to the doctor. He hasn't failed us yet, and if he does recommend to take her off of treatment, we need to decide this as a family and be fully informed. Novel idea, huh?
BREAKING NEWS! My dad just called and my mom is already on her way home. He says that she is doing and feeling 100% better! Yay! Don't put all your eggs in one basket! Yay! The sky is falling! I obviously don't know how I feel right now. I am hoping this sticks for a bit. I am hoping to see some pep in her step. Fingers crossed.
Monday, August 12, 2013
Loose skin and brain mets
Well, the cancer has metastasized to the brain. The liver has gotten worse. Mom is now so thin that the skin is hanging off her arms. We are in a dire situation. What do you think my mom thinks?
"It's only three little spots on the brain."
"My doctor said that I could live without 3/4 of my liver."
I just don't get how she can be so positive with some things and then over the top depressed about others. With this diagnosis, where is the lady that hurls to my dad how he is lucky to go to work and be healthy? How can her brain function normally one minute and delusional the next??
Mets to the brain does explain her demeanor...and it makes me sad. We are headed to the radiologist tomorrow to get the new plan and to get her tattooed to start to remove whatever the fuck is on her brain. Dr. G. wants to meet with her the day after she stops radiation for his part of the chemo plan.
I guess I am just wondering how much more mom can take. I mean seriously, she has been a warrior, albeit an awful one. The will to live is strong in that woman, even though she can barely get off the couch. I just don't get the stamina.
We got the word that her disability was approved today....to pay out in January 2014. Who is to say that she is even going to be here?! I talked to my sis-in-law about it and she said that unfortunately, many people pass while waiting out the 5-month wait period to receive benefits. This could be a real situation for us. My dad needs this money. My mom has effed their financial situation so bad, I have no idea how they are going to survive. Cancer not only stole their livelihood, but their hopes, dreams and financial freedom. It is very worrisome.
Yet, here I am, typing this and not shedding a tear. The world is crashing and I am calm. I just want my mom to not be in pain. I want her to have some pep in her step. I want her to enjoy her grandchildren. Is that really too hard to ask?I feel like if she were to refuse chemo, she may be able to regain some of herself. But I think my mom will soldier on. I swear, it's the fucking chemo that is going to get her.
Until tomorrow to see what the radiologist says. I wonder how long she'll have radiation. I'm going to try to ask him if there is a difference between BRAIN cancer and BREAST CANCER in the brain. Hopefully we have the less of two evils.
"It's only three little spots on the brain."
"My doctor said that I could live without 3/4 of my liver."
I just don't get how she can be so positive with some things and then over the top depressed about others. With this diagnosis, where is the lady that hurls to my dad how he is lucky to go to work and be healthy? How can her brain function normally one minute and delusional the next??
Mets to the brain does explain her demeanor...and it makes me sad. We are headed to the radiologist tomorrow to get the new plan and to get her tattooed to start to remove whatever the fuck is on her brain. Dr. G. wants to meet with her the day after she stops radiation for his part of the chemo plan.
I guess I am just wondering how much more mom can take. I mean seriously, she has been a warrior, albeit an awful one. The will to live is strong in that woman, even though she can barely get off the couch. I just don't get the stamina.
We got the word that her disability was approved today....to pay out in January 2014. Who is to say that she is even going to be here?! I talked to my sis-in-law about it and she said that unfortunately, many people pass while waiting out the 5-month wait period to receive benefits. This could be a real situation for us. My dad needs this money. My mom has effed their financial situation so bad, I have no idea how they are going to survive. Cancer not only stole their livelihood, but their hopes, dreams and financial freedom. It is very worrisome.
Yet, here I am, typing this and not shedding a tear. The world is crashing and I am calm. I just want my mom to not be in pain. I want her to have some pep in her step. I want her to enjoy her grandchildren. Is that really too hard to ask?I feel like if she were to refuse chemo, she may be able to regain some of herself. But I think my mom will soldier on. I swear, it's the fucking chemo that is going to get her.
Until tomorrow to see what the radiologist says. I wonder how long she'll have radiation. I'm going to try to ask him if there is a difference between BRAIN cancer and BREAST CANCER in the brain. Hopefully we have the less of two evils.
Wednesday, August 7, 2013
Notes - nothing surprising here....
Treatment isn’t working
111 pounds
Giving her two bags of saline to help with dehydration
Brain scan tomorrow (8-8) at 3
Chest xray today (8-7)
Cancer is progressing and chemo is not working. The liver is worse. Dr. Weiss is concerned about the liver…this time there is a
lot of stuff on it.
Does the treatment benefit mom this much that she should
stay on the chemo? Dad is going to ask about this.
These are my notes from talking to dad on the phone. Not good, but also not surprising. I feel very calm about this for some reason...almost like I am on Zoloft or something. My poor little sister was all upset and crying and I just felt like a zombie robot. I think I am more concerned about the brain scan taking place tomorrow.
Positive Vibes
We have two doctors on her case
Mom was still asking about treatments - maybe she isn't "giving up"
So I will try to focus on those. Till next time.
Monday, August 5, 2013
PET
Today marks another PET scan day. Mom has been having trouble on this new chemo with constant vomiting, weight loss and just overall feeling terrible. There have been two times that she hasn't been able to receive the chemo because her platelets were so low. The doc is concerned about the cancer in the liver and it wouldn't be surprising to know that it has spread further.
Mom said to me last week that she may not want to continue treatment. I don't blame her. She's stage four, her time is limited, why feel like shit the entire time? What's the fucking point? I want my mom to be around just as badly as my whole family, but not at this expense.
Mom called me today on my way into work. She said that my dad was worried about me because I haven't really been talking to them or stopping over. I told her that at 33 weeks pregnant, I am constantly exhausted and super emotional right now. Then I started to cry. It was nice to have a conversation with my mom that wasn't totally about her. Sounds awful right? It was nice to have my mom concerned about me. It felt normal. God, we haven't had a conversation like that in forever. Of course, she gave me crappy advice, like always, but it was normal.
Maybe without chemo, we can be normal for a minute? The medicine isn't working, it just isn't. I don't need the results to come back to tell me that.
Mom said to me last week that she may not want to continue treatment. I don't blame her. She's stage four, her time is limited, why feel like shit the entire time? What's the fucking point? I want my mom to be around just as badly as my whole family, but not at this expense.
Mom called me today on my way into work. She said that my dad was worried about me because I haven't really been talking to them or stopping over. I told her that at 33 weeks pregnant, I am constantly exhausted and super emotional right now. Then I started to cry. It was nice to have a conversation with my mom that wasn't totally about her. Sounds awful right? It was nice to have my mom concerned about me. It felt normal. God, we haven't had a conversation like that in forever. Of course, she gave me crappy advice, like always, but it was normal.
Maybe without chemo, we can be normal for a minute? The medicine isn't working, it just isn't. I don't need the results to come back to tell me that.
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