My mom found out yesterday

ericakr

Hi everyone. I'm brand new as of a few minutes ago and this is my first post. Its long and its pretty rambly but I needed to get it all out there. Thank you for welcoming me into your community. I'm glad a place like this exists.

My mom has been having severe headaches for about two months now. She'd take some medicine for it and then go about her day. She'd go to work, she'd watch TV, she'd be normal. When it started hurting her face and she was in obvious pain even to the people around her that didn't see her all that often she went to see a doctor. He said she had a sinus infection and sent her home with medication for it. That was a month ago.

When she finally called a doctor after having double vision on her way to work I thought maybe she'd had a mini stroke. And still she insisted on driving herself to the hospital after working for half a day. Cancer was never something that crossed my mind. Especially not in the brain. But when that doctor told her to get herself to the emergency room and she was admitted after they found a mass on her brain I spent that night searching online for what a mass was, hoping for an explanation other than the one I knew. That was Tuesday.

But it wasn't until she got home on Wednesday that I knew even how big it was. I knew it was cancer before she told me because when I asked the operator what floor she was on I was told oncology. My mom kept calling it a mass. Even last night, Wednesday, she kept calling it a mass and refusing to give it the name of cancer. I'm a worst case scenario type of person. I know what brain cancer can do because I've worked in hospice and seen people with it. I'm freaking out, on edge and feeling raw right now because I know all of this.

My mom won't give it the name. She's in denial and I know that she's trying to protect me. But she can't. I'm not a child, I'm 28, and though I'm afraid of losing my mom, I'm not afraid of going through this with her. She doesn't just have a mass, most of the top of her brain is covered with cancer. Like a hat. She smiled when we were talking about it last night. I wanted to go find the doctor that told her she had a sinus infection a month ago and scream at him. Its not his fault he didn't look closer and I don't even know if my mom told him enough that he would even think to consider cancer. But I'm angry at him for not knowing. And I'm angry at her for not going to the doctor sooner, even though I know that, because of the size of this cancerous layer covering her brain, it has likely been there for years.

The lymph nodes in her neck are also hard and swollen. Another thing that's been going on for at least a month. One of them was biopsied at the hospital. They did a barrage of tests and she'll find out just how bad it is when they call her in one to two weeks. Then she'll find out the risks and personal cost of chemo. She thinks it'll be like taking pills where she can go to work right after. I hope she's right but I've seen that it's not.

My mom is in her sixties and she's a good person. I know people say that about their parents all the time and though she doesn't have a nobel prize and didn't invent a new way to cure the common cold, she doesn't deserve this. I see people in the news getting life sentences for heinous crimes. They're the ones that should be suffering, not my mom. They get cable TV, hot meals, shelter, and a bed even though they murdered people or raped children. Its not fair and its not right and I'm so angry right now.

Today is Thanksgiving and I'm finding that I hate this time of year. My birthday is next month and two years ago my grandma died around it. Last year my uncle died at the beginning of December. I love my family and have an amazing fiance but I don't want to be cheery right now. Happy Holidays sounds so false and I can't stop crying long enough to say the words anyway.

I'm going to have to call my dad and grandparents today and tell them Happy Thanksgiving! I won't be telling them about my mom, not because I don't want to, but because she's said that she will tell my dad when she knows more in a few weeks. They aren't close anymore and haven't been since I was a child but he loved her, they were married, and he deserves to know. An omission as serious as this is still a lie and I'm not looking forward to lying to the people I love today.

mccindy

Try to think positive

I can certainly understand your frustration.  Please try to remember that there's no way to know what kind of growth her tumor is until it is biopsied and pathology results come back.  Not every brain tumor is cancerous, and even those that are have different grades.  They might be able to remove some of it and start her on treatment to stop the growth of it.  Try not to pay to much attention to Google because you can find some pretty terrible information on there that isn't very accurate.  All you can do right now is the hardest thing to do - wait patiently for the results, be positive and support your mom.

As far as her lymph nodes - if her mass is a primary tumor, they don't usually spread outside of the brain and affect the lymph nodes.  If it is a secondary tumor, that would mean the original cancer was somewhere else in her body and then that could affect her lymph nodes.

None of us who get this cancer diagnosis are deserving of such a thing, I believe it's just bad luck for some of us. 

 

 

ericakr

mccindy said:

Try to think positive

I can certainly understand your frustration.  Please try to remember that there's no way to know what kind of growth her tumor is until it is biopsied and pathology results come back.  Not every brain tumor is cancerous, and even those that are have different grades.  They might be able to remove some of it and start her on treatment to stop the growth of it.  Try not to pay to much attention to Google because you can find some pretty terrible information on there that isn't very accurate.  All you can do right now is the hardest thing to do - wait patiently for the results, be positive and support your mom.

As far as her lymph nodes - if her mass is a primary tumor, they don't usually spread outside of the brain and affect the lymph nodes.  If it is a secondary tumor, that would mean the original cancer was somewhere else in her body and then that could affect her lymph nodes.

None of us who get this cancer diagnosis are deserving of such a thing, I believe it's just bad luck for some of us. 

 

 

Thank you

Thank you for your message. I don't know if this is related to the mass or not but my mom has lost 16 lbs since the end of September which is scary in itself. She bought her first hat "for when I lose all my hair" yesterday. I reminded her that we know nothing yet since the doctor hasn't said anything but I know where her head is and now we just simply continue to wait for when the doctor calls her to let her know what they found out and how far this thing has actually spread and what options are available. The waiting is the hardest part and I'm not patient at all.

mccindy

ericakr said:

Thank you

Thank you for your message. I don't know if this is related to the mass or not but my mom has lost 16 lbs since the end of September which is scary in itself. She bought her first hat "for when I lose all my hair" yesterday. I reminded her that we know nothing yet since the doctor hasn't said anything but I know where her head is and now we just simply continue to wait for when the doctor calls her to let her know what they found out and how far this thing has actually spread and what options are available. The waiting is the hardest part and I'm not patient at all.

hair loss

Hard to say whether she'll lose her hair. If it's a primary tumor and she gets chemo for it, it will be the pill form (the regular stuff won't cross the blood-brain barrier).  That kind of chemo doesn't cause hair loss, just nausea.  IF she gets radiation, she'll likely lose the hair in the area where the radiation is given.  Sometimes it grows back after. 

The weight loss is a tough thing too, but hard to say what the cause is.  It could certainly be stress; that happens to a lot of people too.  Whether the mass has any relationship to it would depend on where it is. 

It sounds like she's pretty tough and looking foward and ready to fight.  Best of luck to you both!

Kees van Beelen

mccindy said:

hair loss

Hard to say whether she'll lose her hair. If it's a primary tumor and she gets chemo for it, it will be the pill form (the regular stuff won't cross the blood-brain barrier).  That kind of chemo doesn't cause hair loss, just nausea.  IF she gets radiation, she'll likely lose the hair in the area where the radiation is given.  Sometimes it grows back after. 

The weight loss is a tough thing too, but hard to say what the cause is.  It could certainly be stress; that happens to a lot of people too.  Whether the mass has any relationship to it would depend on where it is. 

It sounds like she's pretty tough and looking foward and ready to fight.  Best of luck to you both!

Temodar

Hi - if your Mum's doctors put her on Temodar, hair loss is unlikely.  Nausea is a problem though - for some worse than others.  I found the anti-nausea pill taxing because it really constipates you.  Word of advice - during chemo, significantly up the fiber and water intake.  It helps a lot.  

I lost weight during treatment because I lost most of my sense of taste so I simply did not feel like eating. Your taste goes because part of what the chemo does is stop cells from splitting.  Apparently cells in your taste buds are constantly splitting.  My full sense of taste came back after about six months post chemo.