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natalie

can't believe I'm here

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Hi everyone-

I have been reading the message board for a couple of days because it's really the only positive thing I can find on the internet right now. After

3 1/2 months of the doctors saying my mom's headaches were a result to sinus infection, migraines, allergies, they finally did a scan (after our multiple requests to do so and my dad screaming for them to do a scan in the hospital) and determined she had a brian tumor. She had a craniotomy to remove the tumor and is recovering well. The biopsy showed that it's adenocarcinoma/metastatic cancer and they believe the primary source is lung cancer. Today she has an appointment with an oncologist. I'm trying to be as proactive as possible and will go to whatever lengths possible to help her beat this disease. My question to you out there is where is the most specialized, reputable doctor, hospital that you all know of? My mom is 55 years old, lives in San Jose, CA and I've already set up a second opinion with UCSF which I've read is one of the top hospitals. Does anyone know of any oncologists they can recommend? As some of you, I'm an only child too which makes me feel especially alone in this. Fortunately, my dad is around to help, but naturally, he's so devastated and I find that I have to be the strong one. Living 2 hours away has been difficult knowing that my dad is not the best pillar of support for my mom. My mom doesn't want to know medical details so I'm going to do the research and obtain it for her. My mom has a positive attitude and has a magnetic personality. I want to make sure she finds an oncologist with the same traits. My mom is the world to me. I appreciate your feedback.

Natalie

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Natalie,

I'm so sorry you have to be here, but welcome. As "the daughter" I know exactly what you are going thru right now! The main thing right now is to try not to be overwhelmed by all the information you have processed about lung cancer and possibilities, until you find out exactly what your mom has, the type of L/C, her stage and available options. It is then that your wealth of information on doctors and second opinions will greatly help your mom.

There are some members here who are in Ca. and can help with recommendations and experiences with oncologists in your area. Until then, know that we are praying for you and awaiting the update after your moms next scheduled tests.

Hang in there. We'll be here for you in whatever way we can. Your family will be in our prayers.

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Hi I am shelly, my mom is new to LC too. only diagonosed in 2/03. we found out last week that she has mets to the brain as well. We are looking into Gamma Kinfe radiaiton. to treat them and get rid of them hopefully.

I know exactly what your going through. I am my moms medical advocate as well. Its a terrible thing to have to bear, but we would not trust anyone else to do this right.

here, you will find as i have lately, un-wavering support for you and your mom. These people here I have found in just the last week or two. Are the most supportive, most caring and most loving people anywhere. You have found the right place to gripe, cry, yell, scream, vent, and become informed by those who live it and are going through it.

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Natalie,

Here are the hospitals (cancer centers) that I have heard excellent reports about, but have no first-hand knowledge:

Loma Linda in CA

MD Anderson in TX

Mayo Clinic (Minnesota?)

I know there is a site that ranks cancer centers. It might be the American Cancer Society Site. (Hey, John, Can you give us some help here?)

Remember: The power of positive thinking can change your world! JudyB

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Hi,

I live in the San Jose area and my Dad's oncologist recommended Stanford Medical Center for my Dad to get a second opinion and maybe Iressa. Unfortunately my Dad never did make it to his appointment. Here's the number to call:

New Patient Coordinator (Oncology Clinic): (650) 723-7471

You will probably get a voice mail but they call back within 24 hours.

I saw an article about the best hospitals for cancer patients in the US and UCSF is ranked much higher than Stanford.

Anyway, my Dad's Oncologist was Dr. Raymond Lee of San Jose Regional Center. He is also my Mom's oncologist. We like him, he is very nice and compassionate.

Good luck!

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Thank you for your quick responses, support and valuable information. The website you recommended seems very informative and thank you Teresa for a local guide. My mom had her oncology appointment at 1:00 and I'm anxious because I haven't received a call from anyone as to how the appointment went.

Does anyone know if there are disability benefits available for the spouse who has to be the care giver? My Dad hasn't been able to work because of this and I'm sure he will have more days of having to take care of my mom or sadness where he can't go to work. Any tips?

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Guest DaveG

Natalie:

Your mother is the same age as my wife. The difference is, however, my wife is the caregiver and I am the one with Lung Cancer. I am now a 19 month survivor, but as is usuall, with good, there is some bad. I was a Stage I Adenocarcinoma of my right lower lung (my story can found under "About Us" off the Main Page of Lung Cancer Survivors for Change). The newest chapter to my story involves being restaged to Stage IV Adenocarcinoma with systemic metstateses to my lymphatic system. I was just restaged in April, following a CT Scan as part of a routine 6 month follow-up to my last surgery, done last September.

I am now on 6 tri-weekly cycles of carboplatin/taxel and a clinical trial of ABT-510.

What can I say about lung cancer? - IT SUCKS It is not easy to make light of a disease, from which, I know, could take my life. That's the real part of Lung Cancer. It is scary, devastating, depressing, and very much life threatening.

Now, we got that out of the way. Let's talk about all the good things that has happened to me since lung cancer.

I am Co-Director of the BEST WEBSITE FOR LUNG CANCER ON THE INTERNET

I have met and correspond with the greatest people in the world, those who are surviving, living with a survivor, or care for a survivor of lung cancer. The common bond, we share, is very, very, very strong. It is a bond which makes us inseperatable. We grow out of a very deep love for each. We project a side to others, that shows great compassion, support, and a deep sense of understanding.

We speak openly of our disease, and treat it as something that can be and is lived with on a daily basis. When one laughs, we all laugh. When one cries, we all cry. When one has something to celebrate, we all celebrate.

Natalie, you are most welcome here. Please, pull up your keyboard, tell us about yourself, and by all means, keep us posted.

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thank you for your responses. My mom's was staged a IV today, which I expected. I guess if it's spread outside the local area then they stage it a IV no matter what, right? They are doing a scan this week to see if it's spread to the liver or pancreas, but she will start radiation on her brain this week. She's just barely healed from her operation, but I know time is of the essence. Once they get the scan back they will determine how they are going to approach the lungs. Fortunately my husband has been as supportive as he can be. He's extremely positive and he tells me uplifting stories of friends, associates and acquaintances. My husbands manager had kidney cancer in both kidneys in 91. The doctors gave him 6 months to live and said that there was no treatment available for the kidneys...they only thing they had at that time was a trial treatment that would only be a 15% chance. Well he went through the treatment for 1.5 years and overcame it and is now cancer free. I also have an aquaintance that had a brain tumor the size of a baseball and cancer in his spine and arms. He went through treatment for over a year and is now cancer free for a year now. I hold on to these stories and the positive ones here on this message board. When I'm with my mom I'm strong, when I'm two hours away I break down. It's wierd that my mom is the one that gives me the strength I need to be able to be strong for her. Does it get any easier emotionally? Do any of you find it hard to be at work and not think about this, break down, forget things, be unproductive? What means do you use to cope at work?

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HI, and wow how do I know what your going thru!! I just posted my very 1st message on here a moment ago, and just read yours.

Im an only child also......my mom is 58 yrs. old and has stage 4 lung cancer, we found out in March!! She went into the hospital with what we thought was pneumonia (that antibiotics werent taking care of!!) and she had side pain, very short of breathe, etc. After 3 days in the hospital, they told us they found cancer cells in the fluid they had removed!! I was with my mom in the room, it was so horrifying!! The worst moment Ive every lived thru!!

Whats strange is their was no huge tumor to detect with a regular x-ray, they didnt even suspect cancer at first!! the CAT scan is how they found the nodules (which they called pea sized) in the lining of the lung and in the fluid and in the chest wall. Shes been on chemo about a month now......... We take it one day at a time, its so awful, so I emphathise with you!! Im so glad I found this board, support helps!!

My mom and I are the best of friends, do everything together, I see her everyday since she lived right down the sidewalk from me!! Im so scared as you are, I cant imagine her not being here with me and her grandkids (my 2 wonderful girls!!)

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Hi Natalie,

I came to this board a couple of months ago for the same reason you did - it seemed a positive place to be. I had spent hours on the net looking for information and most of the information there was horrifying. Then one day I did a search for lung cancer survivors and it brought me here. I bookmarked the Good News section and came everyday and finally got up the courage to join. It was the best thing I ever did. This is the most supportive group of people I have ever been around. I have stopped surfing the net for information. Any information I need is right here, all I have to do is ask.

I am sorry you had to come here, but you will find a warm welcome and lots of support. Everyone here is willing to lend an ear, offer encouragement, and advice. Hope your Mom is doing well.

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Guest DaveG

Aquick note to Chococat: I deleted your test post.

Natalie: Concerning living with, dealing with, working with lung cancer. People have asked if I can ever get away from cancer. The answer is "No". It's very simple, cancer cannot get awat from me. It's there all the time and we get reminders of it's presence, constantly.

As I have had two surgeries for lung cancer, I have ongoing discomfort in my ribs and upper abdomen. This discomfort is not dibilitating, but it's there and I notice it more on exertion. Since the cancer has now matstaticized to my lymphatic system, I do have some pain in the middle of my back, which they believe is being caused by two lymph nodes pressing against my spine.

Doctors have become very aggressive in treating pain. They found that when the body has pain, and pain killers are prescribed, when taken according to the prescription, pain can be very easily controlled. The body will crave the pain killers as long as there is pain, and the craving will cease when the pain has ceased. They have found that only in a few cases, will a person become addicted to the pain killers, when taken in this manner.

I am on oxycontin and oxycodone to control my pain. Because both pills cause drowziness, I take it, in accordance to my level of pain (using the 0-10 scale) and in accordance with my expected daily activities. I have just started taking these two meds, so, of course, I have yet to find the comfort level.

In regards to work. That is something your mother is going to have to determine on her own, with the advice of her doctors, your father, and her employer. Because of treatment schedules, exams, etc., she may want to consider medical leave of absence. As a Stage IV, I would suggest that your mother contact Social Security and concsider applying for Social Disability Income.

Shortly after my diagnosis and first surgery, I retired. I was able to meet the requirements of my employer to do. I rolled my 401K into another fund, so that I had management over it, rather than my previous employer. (There are laws governing that and I would recommend that your mother consult a broker.) I have probably one perk your mother doesn't have. I am retired from the US Army, and am receiving a retirement check each month, but that is not enough, therefore my wife is working.

I retired for several reasons. I was not able to maintain the expected work hours for my position, nor was I able to maintain the overall expectations for my position. I loved my work very much, but I came to the realization that my health outweighed my employment. There was not a dry eye in the house at my retirement party. I retired, also, "to stop and smell the roses". As you know there is much uncertainty with lung cancer, and with that reality I wanted to get the time to do things that I have always wanted to do. I took a big income crunch, but through my bank, I was able to refinance my house, opened an equity account, and began a money mangement program with my bank. I was also in the stock purchase progam with my employer, so I do have a fairly sizable stock fund to fall back on, if needed.

If your mother has health insurance through her employer, by Federal Law, she can roll that health insurance into a program called COBRA. She, again, should consult with her employers insurance department.

I regards with how I live with lung cancer. First of all I can never get 100% away from it, because it is 100% with me. It's too bad, like a heavy coat on a warm morning, that we just can't remove it and leave it at home. I am able to go out and do recreational activities, such as play golf. The only way the lung cancer interferes with that is for a few days following my "chemo day", I am pretty much "wumped". As I have chemo once every 3 weeks, I have two good weeks (and I hope it continues) to get out and enjoy myself. Lung cancer is like a "little bird" sitting on my shoulder and never flies away. It is only natural that it is this way, because we can't get rid of the cancer that quickly.

I also live with cancer by being a very proactive LUNG CANCER PATIENT ADVOCATE I am a phone buddy with ALCASE, amember of a local Lung Cancer Support Group, and, of course, Co-Director for Lung Cancer Survivors for Change.

I have been through all the "normal" emotions a lung cancer patient experiences: depression guilt, why me, denial, withdrawal, blame (does anybody have any other emotions?). All of us here at this site, who are survivorsm, have experienced all these emotions, plus probably more that I could not remember.

Most importantly: as I have said before, these people here at LUNG CANCER SURVIVORS FOR CHANGE are the best people to come to when you are trying so hard to understand what is happening with your mother.

I am going to give you two rules to live by:

(1) DON'T COUNT THE DAYS

:!::!::!::!::!:

(2) REFER TO RULE ONE

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Hi I am in the same exact boat you are with my mom who was diagonosed 2/7/03..we found 2 brain mets on 5/9/03 and she under going radiation for her brain and chemo for her chest tumors. I have been helped so very much from this board than with any family member or friend because these people live it every day. Take strength from everyone here who is living your same nightmare. Its awful and it sucks and this should not be happening to our loved ones but unfortunately it is. So do what I am doing, come here for advice and info. Be your moms medical advocate and get informed. come here daily for hope and a shoulder to weep on. Vent to us cause we have broad shoulders and can take it. I find now one minute I am feeling positive and 18 seconds later i am filled with despair over possibly losing my mom and best friend all at once. I can't fathom my life without her. She is my mom and I would in a NY minute trade places with her to take her pain and fear away. There is no magic way to deal with this, no special thing to make you feel better that we can say. its a pain no one should have to live through. but were all doing it together here. please email me if you ever just want to get your emotions out. I live them too.

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I'm so glad I wrote in. It sure gets lonely and to know there are people that know exactly how you feel is comforting. It is also beneficial to get a perspective from someone that is going through what my mom is going through. Additionally for my husband's sake it will be good for me to have an outlet here. He can't understand what I'm going through, although he tries really hard. Chococat, we are both in Sacramento, maybe we can be support to one another. I sent you a message in your inbox.

Thank you all.

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Natalie, sounds like you are a good daughter and a good advocate for your mom. She is lucky to have you there. You, too, need emotional support so reach out and get it. I am my wife's primary caregiver, and although I get support from my daughter, I need the emotional support of a friend, and I am lucky to have a great one. Blessings in your journey. Don

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Natalie,

I am so sorry to hear about your mom. I highly recommend coming to this site whenever you feel you need some support. There are so many loving and wonderful people here, who have either personal knowledge or general knowledge of just about anything that is concerning you.

As far as recommendations for oncologists or hospitals, the website Judy sent is really good. Also, my husband and I had a pretty good experience with our visit to the Mayo Clinic. It's in Rochester Minn., it seemed like the entire town of Rochester was set up to support the Mayo Clinic and it's patients. They have hundreds of oncologists who look at more cancer cases per year than just about anywhere else. They also are a research facility so they have information about clinical trials here and abroad. Also, I've heard a lot of good things about Kettering Sloan which I think is in MD.

I don't know of disability benefits for a caregiver, but your father is entitled to claim absence from work under the Family Medical Leave Act. It is an unpaid leave, but it guarantees your fathers job at his current salary upon his return. It is good for up to 12 months. Your mom would be eligible for SSDI (social security disability insurance, especially if she is a stage IV).

I can really relate to what you and chococat were saying about being scared. About letting that fear consume you, keeping you from being able to function at work and do the things you used to do normally. My husband was diagnosed on 3/19/03 with stage IV LC with mets to the lymph nodes and liver. He's the love of my life, and I can't imagine living one day without him. I am scared to death, I would do ANYTHING to take this from him. The first month, all I could do was cry :cry: . I couldn't even talk to people about normal things without breaking down. On my drive to and from work I usually had to pull over once or twice because I'd be crying so hard I couldn't see to drive. People at work at first tried being extra nice to me, hoping it would help keep me from breaking down, but that didn't help. Then they just started to avoid me, and that didn't help either. Then I found this site. It has really helped me channel what I am feeling. After 2 months now, I find I can work, as long as I am really busy, I can try and not think about cancer for at least a few hours. I find the stress of work is like an emotional vacation from what I am usually feeling. You sort of build an emotional shell around you. It's a fragile one, and yes, the tears still do come at times. There are good days and bad. But I can now think positive thoughts too, I can now get pissed at this Damn Disease, and with my help, my husband is going to kick it's a$$. The great thing, is that everyone here understands. If I'm having a good day they celebrate with me, if I'm scared, they stand by me and offer prayers, when I'm completely down, they can relate and offer advice and lift my spirits.

My suggestions, try and get sleep, lack of sleep feeds anxiety. Take good care of yourself so you can better take care of your mom. If you can't get your emotions in control (like any of us really can), but if you can't function, see a counselor, ask your doctor to prescribe anti-depressants. There is no shame in either. Cancer SUCKS and is too big of burden for you to feel you need to carry it alone. Take whatever help is offered.

I will be praying for your mom and you,

Carleen

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