Harder than a newborn

So this post has taken me a few weeks to get up the courage to write. We had a tremendously difficult weekend with mom the 14th and 15th and it has really set the tone for the past few weeks.

On June 14th, my dad was getting ready to board a plane to Belgium for two weeks for work. My sisters and I knew that we were going to have to take care of mom, and we were all cool with that. At about 10:00 that Friday, dad called me in a panic that mom was going to the hospital - she couldn't breathe. He was getting ready to leave for the airport and was beside himself. Mind you, mom's oncologist knew that dad was leaving and told him that it would be fine to take the trip.

My aunt and uncle came over to take my ma to the hospital and dad went to the airport, a complete mess.

All day, I checked in with my aunt and uncle - they took such good care of her that day. I ended up leaving work at 3 and while I was on my way home, she was discharged. The hospital did nothing for her except run tests and soup her up with dalatin (sp) which made her loopy. I checked in in the late afternoon and she was sleeping. I figured I would run over Saturday morning.

In the meantime, my husband's whole family descended upon our house for a family reunion that was taking place the next day. It was a beautiful summer night. At around 9:30 I went up to my room to grab my phone that was on the charger so that I could snap some pictures of the kids. I noticed that I had missed a call at 9:15 from my cousin Jenny.

I immediately called her back to find out that her mom, my mom's sister, had stopped by and that Aunt Karla was VERY concerned about mom. So concerned that she left my mom, went home and called Jenny to tell her about it instead of alerting any of ma's children. Jenny meanwhile was at work trying to get in touch with me and my sisters. I was livid when I found out. If you are that fucking concerned about someone, DON'T FUCKING LEAVE THEM HOME ALONE. DUH.

At any rate, I went downstairs, told my hubby and family that I had to roll and left. On the way to mom's, every bad scene imaginable was going through my head. I called my sister to let her know what was going on and just prayed that mom was okay and not dead on the floor.

I got to mom's around 10:00 and she was laying on the couch, kinda out of it, but I wasn't too concerned that I had to call 911 or anything. I decided to stay the night. She was laying on the smaller of the two couches because it gave her more back support or something. She finally fell asleep around 10:45 and I fell asleep not too long after that.

At about 2:45 a.m., I was abruptly woken by mom's bone shattering coughs. It was a feeling I can't really describe. It was like electricity ran through my body - her coughs were so violent. I ran into the room to see her sitting up and just coughing and trying to catch her breath. After a few minutes, she calmed down, but I was a basket of nerves. I was then up until approx. 5:00 a.m., just trying to monitor her breathing.

Watching my mom was harder than watching a newborn. You don't worry that the newborn is going to die at any second. It was horrific.

At 7:00 I was awoken by my mom retching and puking. I again ran into the living room. It's really a mind fuck when your poor mom can't control herself. I was helpless. Truly. I couldn't do a damn thing.

She and I went outside after a while and ate some yogurt. I ended up leaving at around 10:00 to get ready for the family reunion.  I knew my mom would have visitor's on Saturday, so I was okay with leaving her in the hands of someone else.

I got home and collapsed with tears. It was awful. Truly, hideously awful. I couldn't bring myself together. I cried, cried, cried. It's hard seeing your mom like this. I did manage to pull it together to go to the reunion, but it was hard. That night when I got home, I was almost blind from the tiredness. I went to bed afraid for my mom's life. But I was so exhausted that I couldn't drive to her house to care for her.

I woke up the next morning at 7:00 and went straight over to her house for a few hours. She was doing better. It was like the chemo really hit her on Friday and she couldn't control herself for a few days. By Sunday she was pulling out of the nosedive.

It's been hard to write all of this because I thought my mom was going to die. This is something that I absolutely DO NOT want to talk about with anyone. If you read this, please keep it to yourself. I don't want to talk to you about it. I am putting it out there for my own help. DO NOT even acknowledge to me that you have read this. I am serious. This was hard for me and I can't go there right now. I have talked about this with a very select few and that is all. When chatting about your mom's mortality it can kind of weight you down.

More has happened, like her platelets are through the floor and she couldn't get chemo today. I will talk about that later. I really just had to get this beast off of my chest.

Third time's a charm????

Today began mom's third time trying chemo since October of 2010. I can't believe this woman has had to endure this much medicine for this fucking cancer. Here are the notes I just sent my sisters:


Okay, here is the rundown from chemo. Mom has lost another 4 pounds since 5/31 - she was not happy about this (she is not at 122). The type of chemo she will be on is called Gemzar. She will be on that for 3 weeks, one week off. The chemo should go in fairly fast, they think she'll only be hooked up for about half an hour each time. This type of chemo is typically used in pancreatic cancer patients, but has been known to do a good job in BC patients.

Side effects include: fatigue (like we need anymore of that), rash and fever (1 in 10 patients develop this - doc is not too concerned about it happening to mom), blood issues. This chemo has been known to beat up blood counts, which may mean that she cannot recieie the chemo on a certain week if her counts are too low. They say that "generally" people do well on this type of chemo.

Mom's port worked like a charm today. I had to leave before the chemo started, so by this point, she should be done now. She said that her energy level was a 2 on a scale of 10 and that she has no strength or energy to do anything.

We need to make sure that she is drinking A LOT of non-caffeinated fluids. They stressed that over and over. So basically, while dad is gone, we need to fill her up with juice, water, high calorie, high protein foods so that she can gain some weight back.

Those are my notes....she was in an okay mood, but you know she gets fidgety when things don't happen quickly....

As I look at the Gemzar website, I came across this little diddy: "Serious lung problems, sometimes fatal, have been reported with GEMZAR. Tell your healthcare team if you develop breathing problems as you may need to stop GEMZAR therapy." WHAT. THE. FUCK. The doctor didn't even list this as a side effect. Mom can't breathe. This is just going to be awesome.

Mets to the Liver and Lungs

So until today at approximately 12:45, my mom only had metastis to her breast, bones, spine, ribs and lymhnodes. Not ideal, but at least not in any organs. And then the phone call came. Mom now has mets to her liver and lung. We've reached that point.

Don't freak out yet. Here is the report:

• One spot on the lung
• Two/three (depending on who you talk to, mom or dad) spots on the liver
• Cancerous fluid in the bottom of the left lung

From what dad says, Dr. G. is very confident that we can knock this back with more IV chemo, and I tend to believe that. Mom has always responded very well to IV chemo. Either Monday or Tuesday of next week she will begin chemo, doc is just trying to figure out which drugs will be the best. He is confident that we can get mom to another clean scan.

While that's great, overall it sucks. I've looked at it as a feather in our cap that we have missed any organ involvement. While these are small pieces on the organs, they are still THERE. Which means our odds long-term are going to go down a bit.

Oh yeah, and they also found a blood clot in her abdomen, so now she has to give herself daily injections of coumadin for the next 3 months to keep that at bay. Again, the doc is not that worried about that. He seems to have a pretty good outlook on things. Since he has been a miracle worker so far, I tend to go along with him and his plans. This time, a bit more nervously.

So, that is a titch of a blow. But what are we gonna do? Keep marching forward, that's what we do.

Before I leave though, I just HAVE to put down how awesome and amazing my dad's service was. It couldn't have gone any better. The weather was perfect, almost 80 people came and we had one hell of a party for dad. His send off was what my dreams were made of. Take a moment to watch his ashes being spread....it gets me every time.

I am hoping to write more about dad's service soon.....

Stupid Cancer

Well, I have a lot of things on my plate right now. Tomorrow I have about 60 people coming to honor my dad at his memorial. I've been working hard every night after work this week to prepare things; get the menu together, work on the guest list, talk with dad's friends, make signs, etc. It's been nice to concentrate on dad this week. It's make me miss him more, but I am very excited to see his friends tomorrow. 

Among the items on my plate is the fact that my mom's health is downgrading. Now, not to the point of imminent death, but to a point where it is getting scary. You'll see in the email chain below that the appointment today was okay, but that it is apparent that mom is......failing? Not bouncing back? Being taken down by MBC? Let's face it, since December, she's lost 20 pounds with barely any weight gain back. That's not a good thing.

So I have decided to soldier on for this weekend and to try to not get bogged down with this depressing news. I've decided I'll get back into the cancer game after dad's memorial is done. I'll hop in the drivers seat and drive this car off the cliff if I have to. Because I don't see this car going to any sort of nice destination.

From: Kasey
Sent: Friday, May 31, 2013 1:40 PM
To: Jessica F
Subject: RE: Did Katie call you?

            Oh I forgot to mention – she only weighs 126 pounds. She weighed 135 only 3 months ago. It’s a gradual thing, but because we see her all the time, we don’t notice how much she’s changed. I don’t know when her scan is. Probably sometime next week.

From: Jessica F
Sent: Friday, May 31, 2013 1:30 PM
To: Kasey
Subject: RE: Did Katie call you?

Well, that’s a little hard to read, especially the “she’s getting worse” thing. I guess I’ve known that it’s getting bad, but I haven’t been concentrating on it. Do you know how far out the next scan will be?

From: Kasey
Sent: Friday, May 31, 2013 11:52 AM
To: Jessica F
Subject: RE: Did Katie call you?

Well that’s not all the info:

·         Dr. believes the spot on the skull is strictly bone and nothing to worry about

·         There are 4 small nodules that have popped up in the past month around her left rib – it’s definitely cancerous, but it hasn’t broke through the skin like the other ones.

·         He doesn’t want to do any treatment until they do another scan (bone scan already done in April – he doesn’t think a brain scan is necessary)

·         The bone spots he wants to watch are the 3 places in her ribs, lower spine (3^rd), back right hip and the one by her pelvis. Everything else is minimal.

·         His main worry right now is the nodules and her lung/breathing issues

It wasn’t a bad appointment. Mom isn’t dying right now, but she is slowly getting worse. I don’t see it getting better – especially with the horrible cough she hasL

Mom and dad said they are coming to your dad’s memorial tomorrow. So she is feeling a little better and up to going out and doing things!

Happy birthday!

Mom has made it to her 53rd birthday! At this point last year, you couldn't have convinced me that we were going to make it this far. The journey in her 53 years has been rough and I don't foresee the next few years being a cakewalk. But at any rate, she made it!

Mom and Dad on their wedding day - 11.23.85 - isn't she so cute?

Over the past few weeks, I've had a rough time dealing with mom, her cancer and her ATTITUDE. She's so negative, always barking at someone, or completely ignoring that anything is wrong (like her broken rib). It's a very conflicting world, being mad at your mom who has stage 4 breast cancer. My sister said, "I have a hard time being mad at mom, she's sick." And I was all, "Hell no, she's being a beeotch."

I finally called my mom yesterday after our rough mother's day. Of course, she had no clue that I was upset with her. We talked, I am hoping that she heard me. I heard her when she said that it is hard to always keep everyone in the loop. I can get that.....do you really want to re-tell the story 8,000 times? I just wish that she would meet us in the middle of the road. Let us in. Let us know things. Let us HELP.

Again, I digress. Mom has made it to 53! Another hairless birthday, hopefully next year she will have hair! I love you mom!

Not sure what to do about this.

I just wrote this to my best friend and I thought I would just put it down here to make sure that I keep track of everything that happens. 

 

My sister called the doc about the mood swings and here is what she wrote:

KK

Ok talked to him. He is concerned about the change in behavior. He confirmed that the scans were clear except for the little bit in the skull bones. He thinks she might have a brain metastasis and needs a brain scan. He is calling her today to talk to her. He said usually with a brain met though- they have other symptoms like numbness and tingling in the extremities. I said she was having pain in the arm. I wasnt sure if it was numbness though.







So at the last appointment that we were all blocked from, mom found out that she has a small amount of cancer in her skull and never told anyone until today when the doctor told Katie. Dr. G. believes that her erratic moods may be a result of cancer in the brain. I will die. I simply will wither away and die if that is the case. Not too sure I can handle that. I know I am being dramatic, but seriously, I can’t keep going through this. It refers to numbness…..mom’s fingers and right leg have been going numb for about the past month. The doc thinks that the mood swings coupled with the numbness might mean brain mets.







The doctor understands that he can’t call mom and tell her that Katie called him. He is concerned enough that he is making up an excuse and wants her brain to be scanned by Wednesday (he is then leaving on a 10-day vacation). Not quite sure what to do……

Mother's Day...

Can kiss my ass. While I personally had a wonderful day of receiving little presents from my children and being able to cook my heart out, it sucked when I went to my mom's. My whole MD went out the window almost the second we walked into the dark house where my mom and sister were sitting in the living room.

Mom was disconnected. She was grouchy. She "yelled" at the kids. When I say yelled, she got really snippy when my little niece wanted to go outside to play. Yes, it was cold and yes, Kelsey was not wearing the proper clothes to be playing outside in. But none of the kids were, and let them just go outside and release some energy for 20 minutes. It wasn't going to kill them.

I tried to get the attention on me and my ever growing belly, just so we could all have something to talk about. Naming baby names seemed to take some of the pressure off for a bit, but then you could tell mom was getting tired or something.

Dad was out in the garage with my husband the entire time, talking his ear off. What Brian told me on the way home horrified me. Mom won't let dad out of her sight. My dad told Brian that his perfect day would be "to be allowed to go downstairs and play the guitar for half an hour." We have a BIG problem on our hands. Mom won't let him go grocery shopping on his own, she'll go, then get tired and then sit in the car. When dad gets back, she'll bitch at him for taking so long.

Mom won't let dad sleep in another room. Although she is up coughing all night long, he is not allowed to go on the couch to sleep. He told Brian that he works 10 hours a day on roughly 3 hours of sleep. What the hell is going on?? Dad told Brian that this is not the woman he married. She flies into a rage over the smallest things.

Oh, and did I tell you that she's given away her Vicoden and OcyCodone to my aunt??? I asked mom, please never do that again. Mom saw no problem in it. EVEN THOUGH SHE HAS A FUCKING BROKEN RIB that is supposed to be managed with pain meds. I guess she got a refill, so everything is hunkey dorey again.

What am I supposed to do? My sisters and I are going to meet up this week to try to figure something out. But what in the hell am I supposed to be doing? All I know is that my mom and dad cannot go on like this anymore. Mom is coming to terms with stage four and now we all are paying for it.

My heart hurts and my head wants to explode. I want to say that I am done with this. Can I, please???