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#1143 05-13-2003 06:44 AM
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rosie Offline OP
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Hi guys,

I've been putting this off, but since some of you have been asking, here goes....... Unfortunately, Heather is not doing well. We thought we were seeing small signs of progress, but some of what we thought was good, the docs are seeing just the opposite.

For example, Heather hasn't been able to lay flat on her back for quite some time now because it seems to restrict her breathing. Her position 99% of the time over the last month has been sitting up and leaning forward, almost doubled over. The last 2 days, she has actually been lying back with the bed elevated just a bit and a couple pillows under her head. So she is not quite flat, but close to it. We thought that was good because she can now breathe easily in this position where before she couldn't. We thought maybe that meant the tumors were shrinking and relieving the pressure on her airway. The doctors, however, think it means she is getting weaker and just can't hold herself upright anymore. But she still can get out of bed by herself to use the toilet. If she was weaker, shouldn't she have more trouble when standing up? confused

She is continuing chemo, but so far, there is not enough change to be able to say it is working. And her white cell counts have dropped below 1000. Her blood pressure started dropping , just after she started laying back flatter on the bed. The doctor sees no connection though, says laying flat is actually better for her blood pressure. And her oxygen level is down.

They are pressuring her to decide if she wants to go on life support if something bad happens, such as a blood clot, heart stopping, etc. She wants to, but they don't think she should because then her husband will have to make the decision when to take her off. They don't have any hope of her getting better and are only doing the chemo to appease us. They never did think it would help. We should have changed doctors months ago, but just never thought things would ever get this bad. How naive we were.

So, that's where we are. At the end of a very tautly stretched rope. I wish I had better news and we are still hoping for a miracle, but so far all avenues I've tried have been dead ends. I've talked to people at MD Anderson and the James Center and Brian has been trying his best to come up with something, but all to no avail.

All your thoughts and prayers for Heather are appreciated, but please don't anyone tell me what a great mother and caregiver I am. Right now, I'm just not in the mood to hear it. Hoping my next post will be better. And for all of you, never give up the battle. Keep fighting and WINNING!

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#1144 05-13-2003 09:42 AM
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Thank you for taking the time to update us all.

My thoughts and prayers are with you and your family.

Dinah

#1145 05-13-2003 09:51 AM
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Rosie-
It was extremely nice of you to think of us and updating the board when you are going through so much! I wish one of us lived closer to give you a break from the hospital and the issues you are coping with on a daily basis. My thoughts and my prayers are with you, Heather, her daughter and husband on a daily basis. Warmest wishes for a recovery that allows her come home and be with her family!!!

#1146 05-13-2003 12:56 PM
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Rosie,
I am sorry that Heather and you have been having such a rough time. I have read your posts over these past few months and it just seems that Heather has always gotten the worst of it compared to most of us here. You are a wonderful, caring mother, as well as an obviously caring person to others here, and I know that we are all pulling for you and Heather and your family.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#1147 05-13-2003 09:58 PM
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Dear Rosie,

I promise not to tell you what a great Mom and caregiver you are, but I will tell you this.
You are not alone.

I've watched my aunt go through the final stages of life. I won't pretend they are easy. It's the hardest thing I've ever gone through. I understand totally what you are seeing and experiencing with nobody in the world to stop it!

She was taken from us at 56. Went to the grocery store and died of sudden cardiac arrest trying to buy dinner for the family.

We never saw it coming at all. I think that was the worst.

Talk to your daughter. Let her know that you are proud of her and that it is ok to go on to the next world.

She needs to know that. My aunt hung on for two weeks in a coma before we gave her that.

Hope is what we live on from the minute we get this diagnosis. For some of this, this works. For others, hope isn't enough, and we're faced with saying good-bye to our loved ones.

God bless you, but you seem destined to have to say goodbye to your daughter. I'm humbled....I don't know how I could do that.

I promised not to say how good you are, but I will say how proud I would be to have you for a Mom. And I know that Heather knows this too.

Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#1148 05-14-2003 03:52 AM
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Rose........My thoughts are with you and Heather during this difficult time. Thank you for the update. Sincerely, Donna


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#1149 05-17-2003 05:18 AM
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rosie Offline OP
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Hi guys,

I know it has only been a few days since I posted the pessimistic update and maybe now I am being prematurely optimistic, but I just couldn't wait to tell you. We think we are seeing signs that the chemo is starting to work for Heather!

Her trismus has improved. 6 weeks ago, her teeth were locked so tight she could hardly get an ice chip between them. Now, I can get my finger between! We are hopeful that this means the tumor is shrinking and relieving the pressure on the jaw muscles. Keeping hope alive! Sunshine and rainbows may still be ahead for her. smile

Keeping you all close in my thoughts.
Rainbows & hugs, wink
Rosie

P.S. Heather will be having an MRI done within the next couple days to try to determine what is happening to the tumors. Will let you know the results.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#1150 05-17-2003 08:33 AM
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Rosie, I am sure you are correct that something is happening with the tumor -- like shrinking -- because from all I have read, trismus simply does not abate like that. I am doing a happy dance for you and Heather, because this sounds like some really good news. You have many friends here and I know I can speak for each of them when I say we are pulling for Heather.
Joanna

#1151 05-17-2003 08:49 AM
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That's great to hear Rosie! I hope and pray that the chemo is working...and better days will be ahead for Heather now and in the years to come. This is an encouraging sign...and so needed for both of you! God bless you both and let us know the results of her MRI. Take care.


DonnaJean
#1152 05-18-2003 03:08 AM
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Rosie
I think about you and heather frequently . So awesome to hear something good. My continued prayers for all of you.
Diane

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