venting

[Andrea]

Just venting over this stupid disease.

I don't get it. My mom was dancing the horah better than I was at my own wedding after she had chemo! Surgery went well. Tolerated radiation even though it knocked her out. Declared in remission. Started Iressa.

And NOW THE DOWNWARD SPIRAL BEGINS!!!!! Fatigue, nausea, loss of appetite, lethargic, etc. It is so discouraging!

She has not had scans since surgery except for the scan in radiology to guide the radiation stuff, so boy oh boy will I be nervous for those! I had a mental breakdown last night over all of this---I decided I had lung cancer b/c in Sept 2002 a ct for gallstones showed an infiltrate/opacity on my lung. Yes, I had a follow up scan and it was "resolved", "no evidence of thoracic abnormality" "clear lungs" per report, but what if they read it wrong? SO I called Hoag Hospital and had them fax me the report again today for me to read. As someoneat work said, cancer does not mysteriously disappear without treatment and to chill out. The report said clear. Logically I know that is right

Anyway, it bugs me how terrible she is feeling. And then a shower--we have a shower on Sunday for my to be sister in law. My mom went to the first shower June 26 and was in bed two days later. She was not giong to this one on Sunday.

Well now she says she might want to go. I found out why. SHe wants to give ME the allusion she is feeling better! I want her to rest and not over do it! So we ahve been arguing over this little stupid issue. She admitted to me that is why she is going (I know her too well) and then my mother in law confirmed that is what my mom said!!!! BUT my mom did promise that if she is too weak she won't go. She said today she would be too weak to go.

And I have NO reason to vent when others have much bigger issues, but I am having my pity party

I will go home and rent a movie and chill tonight.

[caledon]

Andrea vent away! I know what you’re going through. My mother was fine up until the chemo started. By the end of May early June she was basically out of it – Bed, recliner, bathroom, recliner, bed, that was her day. Home care support services were a godsend. In three months I have watched my Mom go from a strong, independent woman to some one who is dependent on others for almost everything. The Cancer is stable to shrinking the chemo is doing her in!

Let your Mom go at her own speed. The effects of chemo are cumulative. Watch for signs of anemia. She has to eat: Jello, blueberries, strawberries, watermelon or cans of boost etc.

The best to your mom and your family,

Caledon

[Elaine]

Andrea

So sorry. I am glad you don't have lung cancer, so that's something to be glad about. Just remember as far as you know your mom is living with NED. It's that IRessa that's to blame. But when you find out Iressa works, you can call it Iressa.

elaine

[stand4hope]

Doggone it, Andrea. We just gotta come up with some way to help you relax. I felt so bad when I read your post. I actually read it before I left work tonight but haven't had a chance to respond until now. We all get upset and emotional, so don't worry about the venting part. Also, I don't ever want to hear you say that others have issues that are more important. Your issues are just as important as anyone else's. If they are upsetting you this much, then they are VERY IMPORTANT! Nobody should have to be in such turmoil.

That being said, I wish I was a psychologist right now so I could give you some ideas how to cope, but I'm not and I can't. All I can do is tell you how I cope with my stress when I know that I am close to freaking out and losing it. I always, always get my peace by turning to God. I just get myself alone (usually in my car driving down the road) and, usually with tears, I ask God to please take away my fear. I tell Him that I am sorry that I have not been trusting Him and ask Him to forgive me and tell him loud and I clear that I do trust Him. By the end of my prayer, I have reaffirmed my trust in Him several times and told Him that I love Him, and I can literally walk into my house and nobody has a clue that I have been freaking out. Works for me! By the way, trusting Him doesn't mean that I expect Him to make all the bad stuff go away. I just know that by trusting Him, even when it's bad, He will eventually make it good. He loves to be trusted!!

Andrea, send me a PM if I can do anything for you. Hey, I've got an idea - I'll try to plan a trip some day to California. My brother lives in Pleasant Hills - I think that's about 1 hr. from Sacramento. Wouldn't that be fun? We could have dinner and get better acquainted. It might be a very long time before I can make the trip, but hey, it's something we can think about, huh? I'll just do you like I do my son when he starts freaking out about something. I stop, look, listen and then say "Get over it." It really ticks him off, but it stops the scene. Of course, I know there's a time to say that and a time not to say that, so don't anybody think I'm insensitive please.

Write soon, Andrea, and RELAX YOUR SHOULDERS!!! You can't stay tense with relaxed shoulders - it's impossible! That's it - relax them - relax them even more - let them droop all the way down as far as they will go and then take a deep breath and relax them again. Voila! YOU'RE CURED!

Love

Peggy

[Andrea]

Thanks everyone. And Peggy, I would love to meet you sometime. When you are in CA, I will come up to Pleasant Hills.

Sometimes this just hits you. I ened up leaving work at 4:30, came home, napped, went to dinner with Brian, and playing on computer and will watch some tv soon till it is bed time. I know what one of the biggest problems is---I spend too much time on cancer webpages. I just sat there reading a bunch of stories on ALCASE of people and how they were diagnosed, etc.

I sometimes wonder, was cancer always around me or is it new? I think it always was, I jsut hear more stories now. I heard a GREAT story today. We just hired someone new at work, her friend, age 30 has lukemia. She needed a bone marrow transplant. Not only was her sister a match, but her brother in law too That is so rare, so now she is going to play the lottery :)

Thanks! It is so nice to be able to whine and vent here. I know we all get down when the news on the board is not that good.

I love you all!

[shirleyb]

Andrea,

Like we have all said before, this is a roller coaster ride you don't wish on anyone. Not the person with the cancer or those that love them. It is a battle and sometimes it just gets to you so much. Take a break for a couple of hours and regroup.

I hope you are feeling better today. Take care of yourself both physically and spiritually.

Much love,

Shirleyb

[Remembering Dave]

Andrea - I'm confused - is it time for her to get new scans?

Otherwise, it sounds like the Iressa to me. Dave doesn't take it (since he has SCLC) etc. but from what everyone else on the board has said about it, it sounds like the typical side effects.

And YOU are fine, your scan told you so! So don't worry about your lungs my dear!

I don't know what else to say to you, can Brian give back massages? You just have to know that if your mom is doing everything she should do, and is getting her scans and stuff on schedule, then you just have to accept the status quo and live your life. We are TRYING to do that here at Chapman Acres. We get upset and freak out a little about a week after a set back, then we try to settle as much into a routine as we can.

PM me if I can help you more, or if you want my phone number PM me, OK?

God Bless,

Karen C.

[David A]

Andrea, I think it takes a lot of our energy just to fend off the cancer sometimes, I mean it is like there is a battle going on in our systems our bodies wigh the help of chemo or iressa fighting those nasty little cancer cells. Personally I don't think it means that the cancer is winning with your mom, I would tend to think she and iressa are fighting hard(and winning) the battle with lung cancer. believe me bursts of energy are a bonus since my dx, even when I was NED?, I think there is a whole new normal we have to adjust too. I hope your mom is able to make the shower and has lots of energy.

[Andrea]

I love you all. I really do! Thanks!

I am off to see my mom now. We have a ritual and she said she would have to literally be on her death bed to not do it, we get our haircut/colored every 5 weeks together. I know this is going to sound very shallow/superficial, but the test of how she is will be if she wants to go to Nordstroms after, which is at the other end of the mall. That is our thing. Some people have a thing of family brunches, church, tempke, etc. Every 5 weeks, hair and Nordstroms is us When she got diagnosed, she cried that that is what she will miss the most, she hated not being able to go with me when she was on chemo.

Karen--scans should be coming up in August, don't have a date yet.

I am upset for a few other people and I feel for them so it puts me more on edge and makes me more crankier and upset aobut my mom. You all know what I mean:)

[Pamela]

Andrea,

I know what you mean about the stress. It's hard to explain to someone who's not in the fight, but I FEEL it all the time. No matter what I'm doing or where I am, underneath the surface there is an acute awareness about Dad's cancer. I have to act normal and smile and laugh and do the work I'm paid to do and fix dinner and do laundry, but all the while I feel the fear and worry eating away.

I read voraciously about lung cancer -- it's almost an obsession. I'm afraid I'll miss something that might make a difference. I sleep, but I don't really rest. I talk to others, but I'm never all there.

Isn't it great to have this group? You've got a lot of friends here who understand and care. Hang in there!

Pam

[mhutch1366]

Andrea,

Please dear heart, after you have done all you can, give yourself permission to relax. A newlywed shouldn't be absorbed fulltime focusing on this issue. I try to live with cancer, but not make it my life. It won't mean you love your mother any less...

And as becky says BREATHE..........right down to your toes......

XOXOXOXOX

Prayers always,

MaryAnn

[Snowflake]

Um, Andrea.....

Seems like you are doing your mother's worrying for her...and yours....and Brian's....and your dad's... GIRL! SHEESH! Drop that nasty coat of anxiety and slip into a comfy T-shirt!

Do you know how to relax? (Bear with me folks, it IS a serious question.) Are there things that bring you joy, like sunshine on your face, the scent of wildflowers, the warmth of a doggy buddy's love?? I know, the hair ritual and Nordstrom's, but how about an afternoon in a park? Someplace you can put down a blanket and watch the clouds in the sky and listen to the birds singing and the bees buzzing along?

You need to put cancer out of your mind for a while, you're going to burn out those receptors! Find something pleasant to put in there, family time, chocolate (MY favorite), nature, aromatherapy, soft music...

Go with your mother to her next appointment (if you're allowed in that office any longer...lol), ask about the fatigue, etc. See if she can have a break from the Iressa to see if all the bad stuff is being caused by that. Part of the fatigue can be the "tummy issues" associated with the drug and having to run to the potty in the wee hours - her REM is being disturbed drastically. I would think her doctor should know that, rest is a necessity in this fight...

Hang in there, girl, just don't stay wound so darn tight (someone's gonna get hurt when you uncoil!)...

xxoo

Becky

[Remembering Dave]

Andrea - how was your date with your Mom Saturday? Did you make it to Nordstrums?

Are you doing better today?

I have to agree with Mary Ann - a newlywed shouldn't be so consumed with these awful thoughts! I know your Mom wants to see you happy and not worried all the time, doesn't she? Sooo, relax, and start working on grandchildren for her, OK? I bet Brian would appreciate that

I, like you, feel like cancer is EVERYWHERE (since my husband and my mom both have it) and I can't believe I actually lived my life oblivious to cancer - but MOST people do, I THINK, ha!

Hope you're doing OK today.

your buddy,

Karen

[Andrea]

Karen,

We did make it to the mall and nordstroms. Not only that, but she could not find an outfit for me in Nordstroms, so she insisted on going to another store It wore her out, but she did it.

And then she dragged herself to the shower on Sunday. Although we were the first to leave. Started at 12:30, by 4:15 it was enough. The darn thing lasted till close to 7

She had the strength on Sat b/c there was a "big" emergency in her mind----for my shower, it was casual. Like nice pants and a shirt kind of thing. Well this shower was dressy, like wedding dressy, so I had to wear my only skirt outfit. The emergency that arose for my mom was---what am I giong to wear for teh rehersal dinner on Fri if I was wearing my dressy outfit to the shower, when originally the plan was to wear that outfit on Fri and a more casual pants outfit this weekend?

I was like I will just wear a business suit on Fri, but no, no, Ms. Stubborn then gathered her strength and trotted to a few stores before she found something for me to wear. "If you would only lose weight and stay one size, t his would not be so difficult". Hard to argue with her when she IS right

[Remembering Dave]

oh, this is way too funny! my mom always did this to me until I got around 40, then she quit fussing over my attire for these events. Thank Goodness! And I am following the line of thinking on both your ends just perfectly. chuckle chuckle. glad you gave her some incentive and a mission!

7:00 for a 12:30 shower? That is way out of control! geez, I think leaving at 4:15 was plenty late enough!!! I hope there was plenty of booze there, ha!

Karen