My mother recently diagnosed

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

I took my mother to the emergency room 6 nights ago because she has had recurrent headaches for over a month. We waited there for 6 hours, she had a CT scan and they found a mass in her brain behind her right eye. They wanted to transport her to the nearest neurological facility, but my mom wanted to go home and sleep so we checked out AMA (Against Medical Advice). The next day, my whole family did some research and found the best neurological hospital in the area and took her there. We were there until 2 in the morning. They did an MRI, another CT, and blood work. They confirmed the mass in her brain and also found a mass or more in her lungs. We didn't find out about the lungs until later. They scheduled her for surgery the next morning to remove the brain tumor. They did just that and the surgery went well. She is still in the hospital 6 days later. They are supposed to discharge her today. The doctor told me that he suspects primary lung cancer with a secondary metastisis to the brain. My father, sister, and I know this information but we don't know if she knows. We suspect she does. I just want her to come home and get better from the surgery and then take the next step. I don't know how I am getting through this. I'm pulling strength from somewhere I didn't know I had. I feel God with me and my family. Does anyone have any advice for me at this point in the process? Thanks.

Crystal

fightinghard2006 · New User Joined: 27 Mar 2006 Posts: 7

Wow! That is so awesome that you feel God with you and your family. I think that is the most important thing right now. I agree, get you rmother better from the surgery and then move tot he next step. Did they say what kind of cancer it was? My mother was diagnosed last week with NSCLC. We will find out the stage tomorrow when we meet with the oncologist. She has other health problems that I am not sure have to do with the cancer or not. I have done a lot of research on the web about complementary treatments (treatments that work with the chemo and/or radiation). I am going to ask if she can take Aged Garlic Extract. This supplement helps to build up the immune system and helps with their energy levels.
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Fighting Hard in Michigan

hoosier · Regular Joined: 17 Oct 2005 Posts: 15

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AL SMITH
PAULAMSMITH@SBCGLOBAL.NET

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

No, we don't know the type yet. She just came home from the brain surgery. The pathology report came back as Metastatic Carcinoma. All we know is that there is a mass in her lungs and possibly other areas. We are going to focus on her healing first and then meet with an oncologist for a consultation. I don't even think she knows. My father, sister, and I are not sure. We haven't mentioned anything to her and we're not sure if she should hear it come from us. But she has the right to know what her pathology report means. I just don't know what to do. I try to get all my emotions out while I am alone or with my boyfriend, but when I go up to see my family, I go into autopilot and just try to be strong and positive. Man, I don't know where this strength comes from. Seeing her so happy and beautiful scares me because that may be because she just may not know what is ahead of her. I feel like I'm in a nightmare. Last Thursday, we were ignorant of any of this. I'm so lost.

Crystal

bkerber1 · Posted: Sat Apr 01, 2006 9:04 am Post subject: Re: My mother recently diagnosed

Hi Crystal,
Im so sorry to hear about your mother. I know exactly how you are feeling. In Jan my Dad was taken to the hospital coughing up blood. He was diagnosed with lung cancer. 2 days after he was admitted we had to take my mother to the ER and didnt know what was wrong with her. Dad was intubated and it was touch and go for a while. My sister and I were at the hospital for a solid week until they were both discharged. We both said we werent ready for this stage of our life, but here it was. It was a blur, we had moments we cried, but we mostly stayed very strong. 3 weeks ago my mother had a biopsy on a lump on her abdomen. She too has lung cancer that has metastizied. She has been given 6 mos. Dad is an optimist and doesnt talk about dying or getting worse, he doesnt really talk about it. Mom does talk about it openly and has no fear. I feel for you and hope you have siblings or others to go through this with. The pain gets a little better as you have time to process your thoughts. Im sure when they go it will get worse, but for now we say nothing to my dad that he doesnt bring up and we are trying to have the best times we can while they are still here. Its just what we have to do. I will pray for your family and wish you the best

Anneli · Regular Joined: 14 Feb 2006 Posts: 13 Location: Finland

Hi!

Chrystal and fightinghard, I'm so sorry for you. I know what you're going through. My father has lung cancer too. He had a surgery last year and they removed a tumour from his lung. It was staged as Stage I NSCLC at that time. It looked good then because they said they had gotten it all out with the operation. But now he has a new tumour in the same lung that they claim is inoperable. So the situation is now much worse...It's sad because he's only 43 years old, I think he's too young to die.

Bkerber, to have 2 parents diagnosed with lung cancer at the same time is too horrible for me to even imagine. I really feel sad for you.

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

My mother finally does know all the facts. She asked my dad to tell her what her pathology report says. She seemed to handle it well and actually said "I'm not afraid to die." She has a follow-up with the neurosurgeon to have the staples removed and then she will see an oncologist. They will do a PET scan and see if there is anything else. I honestly feel like this is all a nightmare and I'm going to wake up soon. When life becomes unbearable, I think the body goes into that state to get you through things. I do have a younger sister and a father and we've all been supporting each other. I feel so protective of my mother. I want to shield her from all pain. I also go through emotional breakdowns, but then I go numb, and strength takes over. It's so strange. If you asked me 2 months ago how I think I would handle something like this, I would say I would lose it. But, now that I am experiencing it, strength appears out of no where. I thank God for that. Thank you all for the support. I feel less alone.

Crystal

bkerber1 · Posted: Tue Apr 04, 2006 1:34 pm Post subject: Re: My mother recently diagnosed

Im so glad your mother knows the facts. To me it was easier once they knew. I hope things go well with the PET scan. I think it was really hard for me at first because I guess things would go downhill faster. My parents are feeling ok for the most part now and it has calmed down from the frantic first moments we found out. I know it will get worse but for now we have said our goodbyes and what we had to say and are just trying to have as many laughs as we can.

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

My mom is still in good spirits, but so weak and fatigued. She hasn't decided whether to do chemo or not. She will meet with her oncologist next week. My father and I will take her. We did just recently find out that she also has a metastisis in her liver. That was a shock, especially since she just had the surgery to remove the brain tumor. To hear news like that is exhausting. I don't want to lose my mom. I'm so scared and it's hard to express it in words.

jayneroxey · New User Joined: 10 Apr 2006 Posts: 2

Hi Crystal, I'm very sorry to read about your Mom's situation and I understand how stunned/shocked you feel by how quickly all this seems to have come about. My sister was diagnosed with breast cancer not quite a year ago. By October of last year it had metastisized to her brain and now is in her nervous system (spinal fluid). She is feeling quite strong in her faith in spite of the pain she is experiencing and the limitations of what can be done for her. When I am with her I am the rock of gibralter, and often when away from her I feel strong in faith and can trust in God's will. Other times I crumble because this has all happened so quickly and the cancer seems so aggressive and I cannot bear the thought of losing my sister. My sister lives almost 5 hours away from me, so I don't get to see her on a daily basis...I do spend as much time as I can with her though. There still are things that can be done to prolong her life...and I know of people who have lived for 20 years or more with their cancer...but I don't want to ever feel like I should have done more. Spend all the time you can with your Mom...may it be God's will that she be with you for many more years to come and may He bless you and keep you strong.
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Jayne

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

Thank you so much for your words. I needed to hear them. I really do feel God's strength in me. My father and mother feel it as well. God's will should not be questioned, as hard as that may be. Right now, my father is trying to be my mom's Rock but he is scared of making the wrong decision. I told him not to put that on his shoulders. We are a family and we work as a team. He is quite scared as well. My mom just wants everyone to decide for her because she doesn't want to think about it. I pray to God for many more years with my mother. I want her here for Christmas and I want her to feel well. I want her to be here for my wedding and many other things. Half of me feels like I'm playing tug of war with cancer fighting for my mom. The other half of me is surrendering this control to God. Tough times, that's for sure. Thanks again for your support & advice.

Crystal

jayneroxey · New User Joined: 10 Apr 2006 Posts: 2

You are very welcome. I am happy that my words could bring you some help. I will keep you and your parents in my prayers.

Jayne
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Jayne

sandee · Regular Joined: 17 Apr 2006 Posts: 10 Location: Florida

Hi bkber,
Your parents sound like mine. My dad died last month after battling a glioblastoma brain tumor for 3 1/2 years. He never complained about his illness and was very brave and upbeat. My mom was diagnosed with NSCLC stage IV in November. In just 5 months, she has gone from the role of caretaker for my dad, to needing full time care herself. She is very comfortable talking about her cancer and sharing her fears. She told me recently that she gets the 3 am heebie jeebies. It's when she cries and is most afraid.

I agree with you comment to Chrystal about having siblings to talk this all out with. My siblings and I have become even closer these past few years. Humor and faith in God gets us through each day.

It sounds like you and your family are handling your double whammy with much grace and love. I'll keep you all in my prayers.

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

Thank you Jayne for the words of support and comfort. I went to the oncologist with my mother and father yesterday. We got the analysis from her scans and what to expect in the near future. She was diagnosed with stage IV NSCLC. They removed the lesion from her brain as you know and are quite surprised at how small the primary lung tumor is. They suggested started with a high dose of chemo and see how she responds to it. The doctor said they probably wouldn't do radiation on her brain until much later because there is much controversy over that. I don't quite understand what he means. Perhaps that the side effects are worse than the chances of a recurrence of metastasis in her brain. Mom is going back to meet her actual oncologist next Thursday. I'll let you know how it goes. Thanks again for your support!

Crystal
Daughter of Sue,
age 50, recently diagnosed
with Stage IV NSCLC
starting chemo in 2 weeks

margiec · New User Joined: 20 Apr 2006 Posts: 6 Location: texas

This is first time I've posted here although I've been reading here for a while and find it most comforting to know that we are all experiencing the same things. This post compelled me to respond.
My mom was was diagnosed with Stage 4 adenocarcinoma with mets to the brain in September. The brain tumor was removed in early October. She then had 3 weeks of radiation. A week later, she started her chemo. She had 5 rounds of chemo-every 3 weeks. She had to start on seizure medication. We tried dilantan, then phenabarbitol and eventually ended up on Keppra. However, the seizure medication was making her so tired and lethargic, they decided to take her off that in February. In January, she became very sick and was admitted back to the hospital. They found that she had 2 pulmonary embolisms in addition to the cancer. She was put on blood thinners and her port had to be moved to the other side of her chest. Last Thursday, she had a very violent seizure. The spasms she had were had so severe that she dislocated her jaw and it had to be manipulated back in to place. We went on Monday for her 6th chemo treatment. They told us that would no longer administer chemo because it was eating her blood. She had a platelet transfusion in March and a blood transfusion a couple of weeks ago. So, no more chemo, but she will start on Tarceva next week. She had a pet scan yesterday and a cat scan today and we will get the results on Monday.
This is all so very scary and believe me, I know what you're going through. Take it one day at a time.
I forgot to mention that my dad was diagnosed with prostate cancer in August. Bless his heart, he has been such a trooper through all this. He had the bead implants done and it causes him to have to pee every few minutes, but he hangs in there. They were both in the hospital at the same time back in January and I slept right between them in the hospital chair. I have a brother, but he's not around very much. That's a whole 'nother story.
I guess my whole point with this response is to stay on top of what medication they are giving your mother. Ask a lot of questions and don't think any question is dumb. Look up every medicine and study the side effects, as well as interactions with other drugs. Sometimes the cure is worse than the disease.
Hugs to you and your mother will be in my prayers.

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