[MOL] Thanks David...Lisa [00177] Medicine On Line


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[MOL] Thanks David...Lisa



Dear David,
Thak you for your reply. I was very touched. I have been finding that being as
involved as possible with my mom's treatment makes me feel better. And we can
have some fun in between. I do have 3 small children so it is kinda tough, also
considering that when she is hospitalized she goes to UCLA which is at least 2
hours from here. It has become very expensive over time staying in hotel rooms
up there and keeping the kids out of school for days at a time, and my husband
taking time off work so we can trade off staying with the kids or being with
mom. I don't feel like I can really be there so much in the hospital that I
would like, and that is the most crucial times! But being involved as much as i
can and being my mom's friend is helping us both out. As for taking time out for
myself, I am planning on doing that soon. As I said I have 3 small children, one
is a baby. I can't really be away from them. My husband works two full time jobs
and I have recently moved out of my area of friends so I have been feeling very
isolated and lonely through this. This forum has made me realize that there
ohters out there that have the same pain as me and are willing to talk about it.
Talking about it helps.
Right now my mom is waiting for a bed in the CICU at the hospital. She will be
starting a new chemo Irinotecan that is experimental on brain tumors. Her tumor
just can't be controlled. She has a glioblastoma multiforme stage 4. She has a
craniotomy  in Feb. and the tumor was removed along with the lower half of her
left temporal lobe to make room for future swelling due to treatments and
relapse(which is inevitable with this type of tmor.).  Soon after she started
radiation therapy. 30 doses shot right at her head. Her hair is gone forever in
that area and she suffered a lot of brain damage. The tumor is near her speach
center so communication and reading are comprimised greatly when the swelling
flares up. She went on a chemo called temedar and had no side effects at all,
which we were grateful for, but after another MRI last week we have found that
the tumor is back to full size. So we go with the more aggressive treatments.
She is also part of the experimental treatment plan at UCLA and will be starting
immunotherapy and any new alternatives that she fits the protocal for ASAP. She
will be having her 50th birthday in July. She is young and it doesn't seem fair
for her to have this. She is the most incredible mother and friend. I can't
imagine this world without her. The world will truly be a less beautiful place
when her time comes. In Jan. doctors said they hoped to extend her life for
another 18 months or so with all these treatments. That to me is so unfair. My
mother survived melanoma 15 years ago after it had metastasized to several
visceral organs. That was a miracale. I am praying for another one now. As much
as I did ntot want to believe the doctors, I am seeing just how aggressive and
relentless this disease is. Now I am faced with accepting my mother's death. The
worst part of it all is the side effects from swelling in the brain. We never
know what it will be this week. There have been panic attacks, seizures, loss of
speech, motor skills, memory. She is so upset over not remembering stuff. She
will accidently call my daughter my son's name or forget my name, and it is very
frustrating. And now she can't read. She is a strong lady and she is determined
to win this battle. I have not talked to her about the cahnces of that.
According to the doctors there is no chance. I don't want her to stop fighting
it. She is so strong. Thank you so much for your message. I don't feel so alone
in this anymore. Lisa

"Whipps, David" wrote:

> Lisa
>
> Hi, I'm David, and joined the forum back in October time as I was the main
> career for my Grandmother who had terminal Bowel cancer and had secondary to
> the liver.  I know your going to find this forum as addictive as I do.
> Sadly, (for me anyway) my grandmother passed on in April.  I thought many
> times about quitting the forum but feel I know the people on here really
> well.  Its like having an extension to my family.
>
> Coping comes in many forms.  For me it was doing battle witht he doctors
> when they said things I didn't agree with, trying to find the best care and
> making sure Nan knew what was going on.  It did take a toll, but in my mind,
> I still had the upper hand on the cancer, as I was always calling the shots
> with the medics.  You need to be there for you mum, (Being English I find it
> hard to type Mom) but just as importantly, you need to take time for you.
> Cry and lash out when you need to, laugh hysterically and don;t feel guilty
> if you do.
>
> You say you don't know who to contact about death and what to do next, I
> can;t say about that as I am over the over side of the Atlantic, and I'm
> finding out how different things are over here to the US (See the Zucchini
> posts!!), but everyone on the forum will be able to help you along on the
> journey.  The are a great bunch of people.
>
> David
> -----Original Message-----
> From: lisafix [mailto:lisafix@home.com]
> Sent: 02 June 2000 18:30
> To: mol-cancer@lists.meds.com
> Subject: Re: [MOL] It's my birthday and I'll cry if I want to...
>
> Dear Dusti,
> I just subscribed last night. Happy birthday. I am also 27 years old and
> dealing with my mother's terminal brain tumor. What kind of cancer does your
> mother have and what treatments has she recieved? We have just started this
> journey but we have already done 30 radiation treatments, and aare going
> onto the second type of chemo, and also endured a craniotomy earlier in the
> year. I am really scared and I am wondering what ways you and other young
> people are using to cope. I have never dealt with death, not even with a
> pet. What should I do or who should I contact? I know I sound like a baby
> but until the diagnosis I was always a "Mama's girl" and now I find myself
> mothering my mother instead. I want to be strong. What can I do?
> LisaFix@home.com
>
> "Barham, Dusti # IHTUL" wrote:
>
>
>
> Hi everyone,
>
> Well I am the big '27' today.  Getting ready to visit Mom's Onc.  I'll check
> in later and hope everyone's day is going well.
>
> Regards,
> Dusti
>
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