I've been reading some of the posts and decided the only way to get involved is to just jump in, so here I am.
My 74 year old mother, as yet undiagnosed, probably has lung cancer. In brief, the sequence of events up to this point:
To let you know how strong my mother is, back in April she was having some severe shortness of breath. But my brother was getting married and she absolutely refused to go to the doctor for any "bad news" until after the wedding. We were able to arrange for a wheelchair at the airports and she flew from San Antonio to Indianapolis, attended the wedding (even danced with my son), and flew home. That Thursday (we were in Cleveland visiting my mother-in-law who has Alzheimer's) my daughter took her to the ER, where she was admitted.
After tests, she was diagnosed with a pulmonary embolism coming from her knee. They then found a few masses in the central part/both lobes of her lung, along with a swollen adrenal gland and a couple of swollen lymph nodes. All fairly local to the site of the lung tumors.
Putting the facts together, everything pointed to lung cancer, since it tends to thicken the blood and cause pulmonary emboli. (BTW -- my husband's a doctor, so he's a fairly good source of basic information like this.)
Several weeks in the hospital. Biopsy the adrenal gland: normal adrenal tissue. Bronchoscopy of the lung trying to get at the tumor: no result.
They sent Mom to a skilled nursing facility for physical therapy. Her O2 was lowered from 5 to 2 liters at this point. 21 days later, she was sent home with visiting nurses and more at-home physical therapy.
She always had some back pain. But when she got home it began to get worse and worse. The pulmonologist wanted a PET/CT scan and the struggles with the insurance company began. After 1-1/2 weeks of daily struggles, she got the scan.
They found a couple of spots on her spine and a new spot on her liver. They also found a fractured rib that the radiologist said was NOT the result of cancer. I believe it was caused by the coughing from the embolism.
Right now she's back in the hospital for pain relief (Phentenol patch for now) and, on Monday, a biopsy. I haven't gotten confirmation yet, but I believe they're going to try and biopsy the spine. I hope and pray they get an adequate sample this time for a diagnosis.
Me? I'm pretty much the sole caregiver. I have a sister and a brother up north. Originally, my sister, a teacher, said she would come in for the summer to help out. But the summer has turned into 2 weeks. One of her daughters is coming for 1 week, the other isn't coming at all this summer. My brother? I have no idea.
So, that's where it stands right now. I have emotional mini-collapses every few days. Then I recover and get back to taking care of things. But not knowing is the hardest thing of all.
My mother keeps asking "how long do I have?" I keep telling her "nobody knows how long they have." But I don't know what to tell her. She's always been on the pessimistic side of things, and I worry that a poor attitude can change her survival rate -- but I don't know how to change that.
Anyway, I've railed on long enough. I look forward to finally getting some support, even if it's only online. Thanks to everyone for "listening".
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Waiting for Definite Diagnosis
- By agru
- Posted June 26, 2009 at 8:50 am · 6 replies
- In Family members and caregivers
- Shared with the public
Explore topics in this discussion:
Pulmonary embolism Cancer Surgery Pain Back pain Lung cancer Physical therapy Stress
6 replies
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- By agru
- Posted June 26, 2009 at 8:09 pm
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Thanks to everyone for your good wishes and support.
They've decided to rebiopsy the adrenal gland, since it's had some changes since the last time and they feel it's the least invasive test. I'm a bit dubious, but hope they get an adequate sample in spite of that.
The biopsy is on Monday and I'm hoping for results on Tuesday or Wednesday.
- By peyz33
- Posted June 26, 2009 at 5:00 pm
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My sister took care of me - and Lord knows I gave her a good run for the money - but she still loves me (go figure) and I love her more than I ever thought possible - hang in there - things will turn around once you have some real "facts" to sort thru - everyone here knows what it's like on one or the other side of this "fence" - sucks to be on either - but we are always here to hear you out and help if we can!
Karen
- By CareyG
- Posted June 26, 2009 at 12:01 pm
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My heart goes out to you so much. Hang in there. I know it has to be tough being the sole caregiver. I can't even imagine.
You're doing all the right things - take care of yourself and get good rest, and take it one day at a time. You and your family are in my thoughts.
Don't you hesitate to come here and vent or scream or cry or laugh or ask questions or whatever. There's a great group of folks here going through it with you.
Much love,
Carey
- By jazzbo
- Posted June 26, 2009 at 9:42 am
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Hi , how wonderful you have a physician as a husband. Well maybe not now that I think about it. Some of us put our heads in the sand and being ignorant of the facts is sometimes welcome. I second what Erin had to say. I think you need to maybe try to get her on some anti depressants for the time being. If she is diagnosed with LC she certainly will need some help in this regard.
As far as familial support, well some people get a lot of help from their family while others don't. A lot of times at first everyone is in shock just like you and they are afraid to say or do something wrong. Where a lot of times it's just speaking as you do everyday and following the survivors lead. They will steer the conversation to where they want it to go. Stress to the other family members that all she wants is to see them and talk. Friends sometimes can be a Godsend at this time. If someone ,no matter who, offers help take them up on it. Even if its the smallest thing ,like taking movies back to a rental store or picking up something at the grocery store, anything. Most people want to help but don't know how. So if you can think of small things someone could do for you or her write them down and when someone says is there anything I can do , sure how about doing this for her.
- By erinroro
- Posted June 26, 2009 at 9:02 am
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Agru,
I just read your profile and see that you are in Texas - then it is a no-brainer! Get her to University of Texas M.D. Anderson Cancer Center in Houston!!! They are the nubmer 1 ranked Cancer Center in the nation!
Erin
- By erinroro
- Posted June 26, 2009 at 8:58 am
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We are here to listen and to provide support - so rail away! In terms of how long your mother has - not one person has an expiration date stamped on their foot, so only God know how 'long' she has! You don't mention where you are, but get here to a good Cancer Institute (I am partial to BWH/Dana Farber Cancer Institute in Boston) and have the doctors there check her over. I had a bronchoscopy, needle aspiration and finally surgery before they found my lung cancer. Thank heavens my wonderful doctors at BWH would not give up until they located the problem.
Please keep us posted!
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