Ok, I have previously posted how upset I am over my siblings not pitching in on the care for my mom. Now, I have just accepted the role as primary caregiver & just try to savor our times together. I now am confused on my moms behavior...
She is rejecting anyones help but mine. I think it's her way of being passive aggressive in saying, " screw you! You are all so busy with your own lives & it's such a bother to come, then DON'T bother!" I think she doesn't want to feel like she's a burden to anyone & maybe I'm the only one she doesn't feel like one with?
Also, she says that she's had her little pity parties for herself, but they don't last long before she reminds herself how lucky she is to have the support & love & that her side effects are minimal compared to what they could be. However, she doesn't do much. She is basically only leaving her house if she has a Dr appt. I can't get her to even do a short trip to a local dollar store or grocery store. She says she's just not up to it.
My question is this: does the chemo really make you that exhausted that just getting in & out of a car completely drains you? Is she so tired because she's not doing anything or is she not doing anything because she's so tired?
She's such a strong woman & I hear her tell people on the phone that she's "fine" even when she's not. I even catch her lying to her Dr & nurses about the real way she's been feeling. So, I don't trust her when I'm not there to tell me how she's really feeling. I'm concerned that she's hiding a lot more than I know and that she's more sick than shes letting on. She even passed up going to my sisters house to just hang while her (moms) granddaughter gave birth to her great granddaughter! I would've thought that would've been something she just wouldn't have wanted to miss. I say hang at the house because we all knew staying at the hospital for hours during the labor would've been to much. But thought that once baby was here she would've been close enough to go on over to see the baby! Mom told us she just wasn't up to it. That she was "too tired"! Even though she sounded so excited talking to me earlier in the day about going. I just am not sure if she's depressed & that's why she's not leaving her house or if she's hiding something more serious?!
Please tell me if those of you who are patients can relate to her tiredness or if it seems like my moms is a bit excessive.
I would like to mention it to her Dr. But don't want to make mom feel badly about it; as if I'm calling her lazy or a liar etc.
Any thoughts on this would really help clear my mind.
Thanks

_________________
10/4/11- Mom admitted to hospital for SOB symptoms.
10/6/11 biopsy results along with full body CT results: NSCLC IVb with bilateral mets, small pleural effusion, large 9.6 cm mass in lower right lobe that abuts mediastinum but does not invade. Rt adrenal mass and two rt lobe brain tumors both approx 3 cm large.
10/17/11 targeted spot radiation treatment for brain mets- not even a headache afterwards.
10/25/11 First chemo Cisplatin +Alimta. Came through like it
was a trip to the hairstylist.
11/15/11 second chemo trmnt- ran her over like a freight train.
12/6/11 third chemo- not as bad as last one, but has developed hand tremors and a horrendous cough.
2/12 had reaction to Cisplatin & now on carboplatin & taxotere.
;lost her hair & cough that was releived for a bit is now back. No energy & no appetite. CT's & MRI has shown some shrinkage in lung & brain.

Yes it's normal and it's not excessive.
Chemotherapy is poison. Not only does it kill the bad cells, but the good ones as well.
Your mom is fighting from within. THings like side effects, low blood counts, dehydration and her entire system is being invaded by poison.

My dad very rarely left the house...his fatigue was extreme. Blood transfusions and iron supplements helped a little, but it was really rough.

I've heard many survivors say that during their chemotherapy they were couch -bound and couldn't do anything.

THink about if you've ever had a a stomach bug, how much energy and how exhausted you are after having vomitted....imagine feeling that way 24/7. Or if you've ever run track....that feeling like you've just run a marathon or sparing match....your body feels like that everyday.

Some people do have an easier time of it, other's rebound after months or maybe become more used to the process, and some, like my dad, never felt better unless he was in the middle of a chemo break.



She probably is. She's your mom. And she's naturally a "strong" woman, so she wants to be viewed in that way,and as a mom she doesn't want you to worry.

Keep the lines of communication open. Especially in terms of her health. Talk to the medical team yourself if you are concerned she isn't telling them everything. My dad was the same way...always said "fine", never complaining....trying to be strong for us.

Your mom will know that you are a safe place to fall and confide in you if she needs to. You can be the bridge between what she isn't saying to the Dr. with what the full story is.

I'm so glad your mom has you and it sounds like she's really glad you're her primary caregiver too.

Don't stop asking her to do things nad to engage. She may surprise you one day and feel like venturing out. Keep your eye on dehydration and just love your time together.

I hope things turn around for the better soon,


(((hugs)))

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Good morning friend,

Yesterday we met with my Oncologist to talk about my second round of chemo. My cancer was cured 4 years ago, but a new one is here and they need me to begin chemo again. Not that this has any bearing, but I was 52, healthy, active, very involved in my community and church, and just a very happy busy woman. He asked if I remembered what side effects I had the last time. How could I not forget?

The first round was not too bad. But each round after that got progressively worse. My husband was freaked out by how quickly I went "down hill". Like Katie said, chemo is poison. It attacks the bad guys, but the good guys get attacked too. Our organs that keep us vital are under seige, our muscles, everything. I know there are some that get through chemo ok, but I think they are blessed. A lot of us have the malaise. Excessive tiredness. No appetite.

My life changed dramatically after chemo. 3 days after infusion, I was laying on the couch, curled up in a fetal position, and stayed that way for another 3 days. The pain was horrible, my chemo attacked my muscles and they hurt bad. All food tasted like metal, so nothing was appealing, and my husband had to beg me to eat. I didn't think this would be an issue because I thought even if I didn't want to eat, I could always force myself. Well, try eating something that sits before you that you know is going to taste awful, smells awful, and get that to go down your throat without wanting to lose it. It was not good. I lost a lot of weight. While I was not obese when I began this, I did get very thin.

It seemed like it took a good two weeks before I finally felt good enough to even try to do something beyond laying on that couch. But by the time I began to feel semi-normal, it was time for another infusion, and it began all over again.

I did lose every hair on my head and body too, though that didn't affect how I felt physically. At the same time, when I showered, and sat at the table to put make up on (on a good day) I would cry because I looked like an alien with no eyebrows, eye lashes, or any hair at all.

Everyone responds to chemo differently. Who we bond with will depend on who makes us feel safe, and comfortable. When all else is not safe or comfortable, we will cling to the person(s) who make us feel that way.

I can't remember when your Mom started chemo, but know that this will get better. My last infusion was in October. I did have my large family over to my house for Christmas. Looking back, I shouldn't have, it was too much for me. But also looking back, I'm glad I did.

HUGS to you. This is tough stuff.

MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Oh and I just read the tail end of Katie's post about never stopping asking her to go out and do stuff. I agree. While she may continue to say no, there may be a time (that will become so special to you) when she says yes. Celebrate that inside of you. Don't make it a big deal, because if she thinks its a big deal, she may decide to not do it.

I have a sweet girlfriend that just had a baby. She wanted to bring lunch, and give me cuddle time with the baby, and time to talk. I haven't even started chemo yet, but I don't want to do this. I'm exhausted trying to recuperate from the surgeries. If my head nods, I want to lay down immediately and take a nap. I'm pooped! I'm not sure i'll have the energy to hold her baby. Right now I just want to rest as much as I can, and am turning down a lot of invites. When I do go out, people are so happy seeing me out and about. Me too.

Anyway, hang in there. Everything is normal, and it's going to be okay.

MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Thank you all so much. It helps tremendously to hear this from other patients. While it breaks my heart to hear about how it feels inside at least I can just accept it and let her do what she needs to without trying too hard or worrying to much.
I am truly sorry that you all had to suffer & wish everyone peace & love.

_________________
10/4/11- Mom admitted to hospital for SOB symptoms.
10/6/11 biopsy results along with full body CT results: NSCLC IVb with bilateral mets, small pleural effusion, large 9.6 cm mass in lower right lobe that abuts mediastinum but does not invade. Rt adrenal mass and two rt lobe brain tumors both approx 3 cm large.
10/17/11 targeted spot radiation treatment for brain mets- not even a headache afterwards.
10/25/11 First chemo Cisplatin +Alimta. Came through like it
was a trip to the hairstylist.
11/15/11 second chemo trmnt- ran her over like a freight train.
12/6/11 third chemo- not as bad as last one, but has developed hand tremors and a horrendous cough.
2/12 had reaction to Cisplatin & now on carboplatin & taxotere.
;lost her hair & cough that was releived for a bit is now back. No energy & no appetite. CT's & MRI has shown some shrinkage in lung & brain.

I'm trying to figure out how to interject some hope into your Mom's future without taking this relief and acceptance away from you.

My husband urged me early on to please stop pretending and to tell the doctors how I was really feeling. I took his words to heart and tried to report honestly. But the truth is, I was not pretending. When I was talking with friends, doctors and nurses or just someone I encountered at the store, I automatically went into "I'm o.k." mode. My long distance friends said they always felt better after talking to me on the phone.

You know your Mom better than anyone. My childhood history and personality combine to make that response natural and normal. When I was growing up, you didn't get sick, you didn't go to the doctor--you sucked it up. Fortunately for us kids, it was usually something that would run it's course. I've been dealing with cancer and chemo a long time now. When I didn't care about leaving the house, my husband would gently nudge me into a short outing. If you can't get her to go, that's o.k. but keep offering (not pressuring). Eventually I realized I'm much better off making myself do things--even little things--that get me out and about. Sometimes the fatigue makes it a real effort. Sometimes it makes it out of the question. Sometimes I do it and it's great.

You are a dear daughter and your Mom is so lucky to have you and she knows it. I'm sorry for the lack of family support, however, because that puts the whole burden on you. There is something I would suggest that was the idea of a caretaker sometime ago--she would read uplifting and hopeful posts from here to her mother. When I'm feeling better, I'll try to write one for you lol. Hang in there. You are doing great.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

I've had one round of chemo (second go-round of BAC, first was taken care of with surgery) and I am exhausted much of the time. When I get tired, I don't mess around...I take a short nap. I am fortunate in that my dr office is excellent in preparing us for what to come, as best they can. Plus, a friend stepped up to share things to expect as well, so as much as I can be, I knew what might come, such as the awful pain that comes sometime after treatment. I knew what it was, and took what I could pain-wise and wrapped up in a quilt and waited it out.

Keep asking your Mother is my suggestion, but don't push her into the car. Perhaps a short time on the deck etc on nice days would help some. It does me wonders.

_________________
2/2011- diagnosed BAC
4/2011- lower rt lobectomy
6/2112- 2 'spots' middle and upper rt lobes, will wait to see if they change, recheck in the fall (will wait to see if they 'do a trick'-phrase my own)
11/2012-spots growing, biopsy schedualed
12/2012-biopsy unconfirmed, dr wanted to wait another 2 months, patient refused to play the waiting game
12/2012-began complementary therapies in the form of supplements
1/2013-began chemo
2/2013-nurse friend started me on balanced PH water to support PH balance as cancer can not exist in an alkaline envoirnment, moving me up from acidic to alkaline PH reading
2/2013-most recent CT shows one 'nodule' disappeared, one a 'dead shell' and the 'thickening tissue around the heart' noticeably smaller-PTL!
2/1013-last chemo treatment cause such severe sickness had to discontinue supplements, then discovered I felt overall worse. Upon restarting supplements, I did feel better, proving that they are helping ☺

CURRENT SUPPLEMENTS:

Morning
Ibuprofen -200x3
Tylenol- 500x3
Atenolol- 50MG 1x
Black Cumin Seed- (essential oils) -2x
Trametes versicolor- 2x (polysaccharopeptide)
Curcumin (turmeric) 1x

Late Afternoon/Early Evening
Ibuprofen -200x3
Tylenol- 500x3
Black Cumin Seed- (essential oils) -2x (autoimmune and hypertension)
Trametes versicolor- 2x (polysaccharopeptide)
Curcumin (turmeric) 1x


Late Evening/Before Bed
Melatonin- 5g x4
Folic Acid-(prescribed) 1MG 1x
Atenolol- (prescribed) 50MG 1x

http://www.ncbi.nlm.nih.gov/pmc/?term=C ... ung+Cancer
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151314/ (Advanced Drug-Delivery Systems of Curcumin for Cancer Chemoprevention
http://www.cancer-therapy.org/CT/v6/A/1 ... 17-130.pdf polysaccharopeptide
http://www.naturalnews.com/030800_cumin ... ealth.html (Black seed oil)