just down

Im about 2 months into this. Today was treatment 3. Im home, all went well. Im feeling somewhat down. There is no cure for us. When i see comments about holding on because there may b a cure, i silently cringe. There wont ever b a cure because to much money is being made off of cancer. Im down because some people seem to appreciate talking about cancer and then others feel your looking for pity or money or who the hell knows and they want you to not talk about it. Im down b cause a few people i began talking to facebook have accused me of not being sick and then others have believed this crap and deleted me also. I was so excited because i was able to have some of my candles sell to prominent people, but for some reason they are now ignoring me. Im down because i think why r we all going thru this when most likely we will die, since there is no cure. I dont like being controlled by the ssi system, your penalized if you try to work at all. They want us to sit home and rot. How can we have a quality of life if when we feel well, we r worrying about the roof over our heads or food, etc. I hate all this. Sorry im such a rotten egg tonight.

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Dawn, There are good days and bad days, and also, just down right crappy days. Sometimes they are single, rare, and then sometimes it is a perpetual sh*#storm. Sounds like my entire year and your past two months are the latter description. There are some people who enjoy the , believe it or not, the pity and sympathy. It is awful when people assume you are less than truthful. I mean who the heck would really pretend this crapola? Please......try to keep positive. The only thing that might possibly really make a difference is ATTITUDE..

I got some BAD news today.....Enough to make me wanna give up??....No Way! BAd, none the less. I need some prayers and I surely am including you in them. Have you ever run a race? Well this one requires stamina and endurance. This STUFF you need to manufacture all on your own. I'm hoping that you can talk with someone, keep on writing, get it all out, and then start this marathon race for your life. I hope you understand that I'm saying this from a good place in my heart. Prayers and blessings. Anita

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For moments like this, I remember all the afflictions which used to be terminal, and now curable/manageable/chronic:
1. diabetes
2. AIDS
3. TB,
4. lupus
the list goes on and on. Sometimes when i remember that <10% bc funding goes to metastatic BC, i feel down. Yet, it also means the territory is not yet fulled tilled and exhausted, and maybe, there are yet some low hanging fruit to miraculously happen to out-of-box thinker/researchers/patients. Then, i feel hope.

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Well I'm 2.5 years into this. I decided to drop medications this summer when I felt pain in my ribs. I decided to drink a glass of juice every hour instead and a totally fat free sugar free diet. And I do it since 6/12/11 religiously every day.

I wake up at 6, eat my supplements, take a shower
cook my oatmeal and eat it with a fruit
prepare 9 glasses of juices, drink one and pack the rest in a backpack together with lunch
at 8:15 I get on a bicycle and ride to work
I get back at 6 and my husband makes my 6 o'clock green juice. I drink it and go shopping for juicing stuff, come back home again and cook fat free dinner/next day lunch.
have my dinner with apple/carrot and go to bed.

On Sunday I go to yoga class also, then we do some of walking/biking/jogging on weekend.
I don't have time to sit and cry anymore and I'm glad. I feel I am a happy person having a perfect happy life I wouldn't have if not for cancer. I hope you will find your lost life too.

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It's the stories of hope that inspire me. i hope that my mom becomes that outlier, that person against the odds. i can never give thanks to cancer, constantly being on edge. it's so easy to be down and i encourage you to vent. we're all listening and empathizing with you. hugs.

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So u r not taking any treatments anymore? How do u handle the pain? What types of juice do u drink?

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I only get headaches. So I take pain trio : 5 g of aspirin, 100 mg of vitamin C and 50 mg of niacin
Sometimes just taking a coffee enema alone will take away my headache.

I'm on a modified Gerson diet/juicing.
7-8:00 AM - BREAKFAST
9:00 AM - A glass of Green juice
10:00AM - A glass of apple-carrot juice
11:00AM - A glass of carrot juice
12:00PM - A glass of green juice
1:00 PM - A glass of apple-carrot juice and LUNCH
2:00 PM - A glass of green juice
3:00 PM - A glass of carrot juice
4:00 PM - A glass of carrot juice
6:00 PM - A glass of green juice
7:00 PM - A glass of apple-carrot juice and DINNER

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What is wrong with people? Only a seriously disturbed person would lie and say they had stage 4 cancer when they don't. As for Social Security...if you feel well enough--go work. You can work part time if you are on disability. (SSI is for low income people) I try to make $500-700 each month to supplement my income and get me out of the house. If you go to work and can't do it, you can get back on SSD. They have a program where you can go back to work, draw your SSD, AND any amount of pay for up to 9 months so you can see if you really are able to work.

Good luck!

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Romashka, i would like to know where u get your juices or how u make them. Also if u dont mind sharing r u doing this b cause u ran out of trearment options or giving your body a break and then hoping to get back on treatment? Kathy, its some weird facebook people, long story, but short of it is, i was a fan of christie brinkleys fb for a couple of years now. She truly does talk with you here and there. When i got ill i got brave and asked her if she would consider buying a breast cancer candle from me and she did. Well soon several people off her page began friending me. I was loving it. One even said when i get better i could come visit etc. She put up a big post on her fb page about supporting my candle business and then poof, removed it, deleted me blocked me and then i believe she contacted other people off the site b cause i am being deleted by more. About 3 of christies friends placed orders from me, all got their orders, so they know im honest. If they choose to believe this fruitloop nothing i can do. Ive since heard that she plays with people like that. Im very sensitive right now due to being sick and being newly diagnosed so im taking this hard. I cannot deny i was getting excited that some of that population was considering not only my friendship but supporting my business. Ill get over it, it appears those who r educated and well off, can be just as poor behaved as those with no education and lack of morals and manners.
For the ssi i was already approved. I was told u cannot earn over a 1000 per month for the first 12 months and if u do yu r cut off and have to re apply. Once u hit the 12th month the rules lighten up abit. Anyhow i was approved but i looked at my payroll yesterday and i may have gone over the first month i was approved! Since then im basically making nothing. I will have to call them. I just get so sad there is no cure for us. No guarantee we could b one of the ones that get the many years.

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Dawn,
Maybe SSI is different than SSDI--Kathy is correct that you can make close to $1000 a month on SSDI and as much as you want the first 9 months. Even if you were able to try and go back to work and found it impossible to handle a full days work; you can immediately get back on SSDI.
It's hard to say not to take it personal; but there are always scams out there, even people claiming to have cancer to make money. Facebook is a social network and word gets around quick. As legit as you are, if someone gets a hint from someone else on your page that you may not be a cancer survivor; they may spread the word of something they know nothing about.

You sound like such a positive person that I'm sure you'll find your way. Wishing all of you health and happiness in 2012.
Terri

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Hi again, I dont know what I'm eligible for, lol, i'm such a mess. I do know whatever it is, begins April 1st and its 790 per month. I also know i was told by my county worker that if i go over the 1000 at any time during the next 12 months i have to re start. so I must not be eligible for that 9 month program, unless that begins AFTER my 12 month wait..who knows. I talked to SSI today and they are sending me another award letter since I lost the first one. I really need to get my act together. I think what has been going on, is when I get mail regarding any of this--I must toss it..i dont want to deal with this cancer diagnosis. I keep thinking if I pretend i dont have it--it will quietly go away and I'll get my life back. The pain thruout the day is the reminder It will not! I'm about over what has taken place on FB..I'll make my own way and god will help me with my business. We dont need "celebrity" or their freinds to make it. I do have to say though-Christie Brinkley herself has been more than kind--its some of the whackos on her page. Its NOT her. I just get so disgusted by anyone who would want to mess with a Cancer Warrior. I mean isnt it hard enough what we are going thru..we are literally fighting for our lives each and every day!!!! AND yes while I do want to promote my business..that was a very tiny peice of of my FB life. It wasnt something I do or did all the time. I have the right to do that--to find a way to earn an income because I can no longer work is a good thing..not a bad thing. Its just sad that so many out there are mentally deranged and get enjoyment out of messing with people. I guess I have to let Go, let God deal with them. I need to focus on healing--and trying to be one of the many years warriors. I so want to see my grandchildren grow and I so want to continue on this earth for many more years.

How about you? How is your life right now??? Do you have good support? The Cancer society today enrolled me in that program where they match you up with a person who is similar to you..so i'll be getting a call from that person at some point. They also offer a gas card I believe once a year for treatment trips-I did that. That will be helpful. We drive about 100 miles each way-which isnt to awful, but then again, I have income.

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Dawn:

I juice with Norwalk juicer.

Carrots are from costco 4.99 for 10 pounds, I go thru 5 pounds per day.
Org. green granny smith apples from Fred Meyer or New seasons, two apples a day, half for each for my carrot/apple juices.
THe green juice is from organic following: a stalk of rainbow chard, two stalks of each: endive, escarole, green leaf, red leaf lettuces, a quarter of a green pepper, a handful of red cabbage, half of a celery stalk, is also purchased from Fred Meyer or New seasons.

I am just trying to see if this will work for six months, if not, I'll drop it after my next scan. I guess then I won't have any options, because I understand chemo kills immune system or causes organ failure, and we cannot live without these. Also chemo might work for some folks to reduce cancer but you never know if it works for you without a test, which is expensive and not covered by insurance. I just don't have faith in chemo. Besides oncologists are saying I'm going to die whether I take chemo or not. I have 10 nodules in my lungs and my next scan is in January.

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Dear Sweet Dawn,

Your name says multitudes about you!! Fresh life, a new day, etc. We are all going to die of something, someday. Live each day and try to do the best you can to defeat this alligator. Yes, this is now considered a "chronic" disease, but we are all fighters,.
Don't give in! I've been stage 4 for 2yrs. and my tumor markers have gone down for 4 consecutive months (first time ever!!).
HOPE!!

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I too have initial diagnosis Stage IV, found out in August, 2011. The last few months were so confusing and yet I have been able to find His Grace and Presence. I'm on Letrozole (generic hormone blocker) daily pill, and monthly injections of X-geva to help prevent bone loss. Not tolerating the meds well, lots of joint pain stiffness and other sharp pains, sleeplessness, rivers of sweat breaking out periodically.... Adverse reaction to pain meds, so another rx to prevent nausea and vomiting. But in midst of all the physical pain and trying to get the right combinations of meds (I've temporarily stopped the Letrozole at encouragement of my oncologist to see what symptoms go away) I am thankful for so much support from family and friends. And yes, I often still feel very alone, because much of this journey just isn't understood unless you've walked this path. But be encouraged, our experiences may be different but the women who are dealing with advanced breast cancer do empathize with you. Feel free to reply or not as you have time and energy. Best to you!

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Im on letrazole also and doing well, well except i dont sleep at night. I do have the joint pain, but after i get up and move about it lessens. When i get my bone treatment it causesjoint pain for a few days. I get my bone treatment thru the iv every 6 weeks. My other iv treatment is every 3 weeks and the cancer pill daily. For pain help i take oxycodone 2 x per day 15 mg and then naproxen 1 x per dsy. Im on a 9am and 9 pm med schedule for 2 months now and it works. I also drink turmeric tea or papaya leaves tea 2 x per day at med time, both of those supposedly kill cancer cells, i do feel very relaxed after drinking them and the pain seems lighter. Ive been faithful with the teas since i got ill. I want to live for the many years with good quality of life, i pray daily for god to grant me thst. While we wont b cured, it dosnt mean we cant live long and manage the cancer right?

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Hello Dawn,
hard for me to believe but I'm approaching a year ago that I was diagnosed with bone mets after they first thought I was only stage 2. I still have days where I feel hopeless or down but as time goes on I've seemed to develop some level of coping otherwise I can't function. Have 3 kids I don't want them to see me as a total mess so maybe that helps me, also take Lexapro an anti-depressant (had never taken one before).

When this was brand new to me I found it helpful to speak to someone, I called the 24 hour Network of Strength (Y-ME Breast Cancer Support). They will connect you with a person who (if you request it) has a similar or same type of b.c. you have. Since there is no metastatic support group in my city,
it was good to talk to someone live who could answer my many questions. You can call them as often as you like, besides this group of insightful
people it's another option of support which is so important in dealing with a life changer like b.c.

My sister gave me tumeric, told me to try eating some with a teaspoon of honey. I haven't tried it yet, she claims people from India who have it in their
diet have a lower incidence of cancer. Wonder how bad the tea tastes, will need to check that out!

hang in there-
Amy
http://www.y-me.org/

http://www.y-me.org/about-y-me/expert-corner-blog/metastatic-patients-need- specialized-support

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I drink tumeric tea, and papayla leaves tea 2 x per day..and i'm been very consistant with it. the tumeric tea is pretty good, i've actually come to enjoy both of them. its like my time to sit and relax. I also take the meds at tea time so it forces me to sit and be still.

Your right--this is very hard..none of us want to die..i'm learning though it wouldnt have mattered if we been diagnosed with an earlier stage. once you begin reading all these stories you see how women who start out early stage alot of them end up right where we are at. i just get sad because I believe in my heart there is a cure or way to sustain but they wont let it out because cancer is such a money maker for so many companies, people etc. so i feel like we all will die for no reason.

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Dawn you were so positive before this, I was surprised to read after your other entries. I had a terrible day at the dr's yesterday I went home dealt with my children, and then moved forward in my mind knowing that I have a small window left to fight but I'll take it. I am happy to be holding food down after finding the right nausea meds. I can now get back to my healthy teas green drinks (carrot/kale/and apple) combo is my favorite. I have a juice machine PIA to clean but love it. I am writing a memoir. What are some of your passions in life? It can be hard to think of them but you have today, tomorrow and who knows what else...find your passions and start in on them. Your well being is #1 everyone else will support you...or should. In the meantime, I hear your frustrations, many more will come I'm sure. I can't even say how upset I get about where all the "pink" money goes as I walked that Boston Avon walk my 2 first years. I was so upset and left out feeling that I stopped. Don't give up hope for you or for any of us. My dr. has a 20 yr. patient he mentions, and other stories help us to know that this disease is so individual. We have to accept the inevitable, but hold onto the promise that we could beat some odds as well. Our attitude will help with that. I feel for you Dawn, and I hate that this epidemic is not letting up. Thank you for posting and I want to continue to hear from you. Take Care!

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Hi Dawn - My mom was diagnosed w/reoccurrence in April 2011. She was originally diagnosed in 1998, had a mastectomy, 6 mos chemo and more than 30 radiation treatments. She was on Tamoxifen for 5 yrs until developing endometrian cancer (side effect of Tamoxifen). That was treated w/radiation and she was then put on Arimadex. After this diagnosis in April, she started Xeloda. The first month after diagnosis was terrible w/several hospitalizations for fluid accumulation around her lung. She is doing much better now and staying positive. I was just researching Tumeric and wanted to share a website that has a warning about this. http://www.mskcc.org/cancer-care/herb/turmeric

Warnings
Recent laboratory findings indicate that dietary turmeric may inhibit the anti-tumor action of chemotherapeutic agents such as cyclophosphamide in treating breast cancer. More research is necessary, but it is advisable for cancer patients undergoing chemotherapy to limit intake of turmeric and turmeric-containing foods. (3)

I am very interested in alternative/natural therapies as my degree is in dietetics. However, I try to do as much research as possible before starting anything.

Good luck with your treatments. Stay strong. You have lots of support here.

PNR

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You can also contact your local Susan G. Komen affiliate for support: http://www.komenmadison.org/about-us/contact-us/ or http://www.komensoutheastwi.org/about-us/. I have been a volunteer since my mom's original diagnosis and the people involved are wonderful. 75% of the money that they raise here stays local (we live in Dane county). I'm not certain if you are going to Madison or Milwaukee for care, but either Komen affiliate should have great support groups for you. They are wonderful people. Good luck.

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I understand the part about feeling down. I found out last month about my reoccurance. I didn't even make it 2 years from my first dx. the c is now in my hip bone and even though it is only in one place the overall outcome just sucks. I'm 46 and I may only have 2-10 years, now that sucks!! But then I think about the children that are going through this and won't make it to there 13th b-day. When I think of that I feel blessed and its hard for my to feel sorry for myself. Dawn we are going to have good days and bad days for alot of us more bad days but we are going to keep fighting because thats what we do. Take Care

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