Dying Wishes - Cancer Sucks!

CANCER UPDATE - OCT 2012

noreply@blogger.com (Unknown) — Thu, 11 Oct 2012 19:48:00 +0000

Cancer Update 2012

THANKS TO EVERYONE HERE ON THE BLOG: As I stated before, my type of cancer has no cure but it does have periods of remission if everything goes right. I am happy to say, things are going fairly well right now. And I credit a lot of that to the wonderful people on this blog who helped me through the bleakest periods of my cancer diagnosis and remission. I wouldn’t have made it without you.

HEALING THE PAST SIX MONTHS: It’s been quite a while since I’ve written. I went through a very bleak period followed by a double cavity surgery in December 2011 and another emergency gallbladder surgery just two months later. I was thinking this was the end of me with all the surgeries and painful healing in the aftermath. But good news, the cancer surgery has healed exceptionally. EATING: The past six months has been spent trying to figure out what foods I can and cannot eat. I need to eat every two hours in order to gain enough calories and nutrition to prevent my body from suffering from effects of starvation. I’ve been doing well. I’ve brought my weight up 20 pounds since my low period after surgery of 141 pounds, plus I’ve stabilized that weight for a full six months. I can no longer eat ice cream or other dairy foods, no steak or tough meats, no caramel, no rice, no soda pop or carbonated beverages, and a few other foods. But overall I haven’t missed them. PAIN: I still take pain medications, quite a few. On my right side body cavity I have no feeling due to the nerves they cut through. It just feels numb. I’ve cut back my medications to minimal amounts. I went through withdrawal for the morphine and lorazepam, but it was worth it. I don’t like owing my life to pain meds.

FINANCIALS: My husband has been working part-time for the past three months through Manpower. It’s different work every week, and about 10-30 hours a week depending on the business that you get sent to. The work only pays $8.25 an hour, but it’s worth what ever we can get. We now have a very little spending money and can save up to eat out once in a while. (Thankfully our friend who plays slots all the time is constantly giving us his comp meals so we can enjoy a few more nights out.) I also received my SSI. It wasn’t very much but definitely better than nothing. Along with it, I received Medicaid for my insurance. My husband has diabetes and will actually be covered by Medicaid as well as long as his part-time work continues with Manpower. He has to work at least two days a week to receive it and so far, we’ve accomplished that.

FOOD: In the surgery, Dr. Dhudshia removed 2/3rds of my esophagus and 2/3rds of my stomach, leaving a long flap of skin on the stomach end to make into a new esophagus. All I can say is … miracle worker. That’s what he is! Since the stitches and everything has healed, my eating is practically normal. I swallow fine and eat most anything I want except the few foods mentioned above. There is no pain from the swallowing or eating. However, the small stomach makes eating interesting in all the wrongs ways. If I eat anything I shouldn’t I get an extreme case of diarrhea. Food doesn’t stay in my stomach very long so processing and keeping enough nutrients and vitamins is hard. I must eat every two hours while awake, which makes me hate the sight of food sometimes. It was real difficult at first because we had no money for special foods and were eating from food banks. The food at the food banks is almost perished by the time you get or is perished. That makes bacteria problems high which are dangerous for me. Also, eating at soup kitchens and buffets or church dinners was out, because so many people had handled the foods and I got sick every time. Along with the SSI in September came food stamps, thankfully, so I can now purchase the foods I need and can eat. I’m not complaining. I’m alive and well for the moment and have lengthened that short life span I was first given, have a little money for necessities, so all is well.

HEALTH INSURANCE: As I said, I also received my SSI just last month, and with it Medicaid for my insurance. Medicaid is not much better than Clark County Social Services health card and has a lot of the same lax and incompetent doctors. But it’s better than nothing and I’m now seeing a heart specialist in addition to the cancer specialists and an internist. The heart specialist is for my uncontrolled blood pressure. I spent two months with no health coverage at all, and could not see a doctor unless I sat in the emergency room for 10 hours. So I saw no one, plus I had no medications at all for two months, July and August. During that time my blood pressure soared out of control. It’s been running 227/115. I also missed my six month check up to see if my cancer is actively spreading. I’ve always had problems with blood pressure. Most of the medications don’t work well for me. I’ve tried four now, but this last one seems to be working better. Not perfect, but better. I'm due for a cancer progress report to see if it is spreading again. That tmeans a CAT/Pet scan. I'm hoping it is still in remission. I'm having difficulty getting a new oncologist (the new insurance does not cover my regular oncologist) so no tests yet. Plus, I'm at a point where I just do not want to hear any bad news. I'd rather let it just sneak up on me and finish me off silently. I'm sure some of you have been there!

THE FUTURE: I am by no means cured. I have remission for the moment, but I’m told when the cancer comes back it will be with a vengeance. It will probably spread very quickly and they can do no more surgeries to remove damaged cancerous tissue or lymph glands. It may come right back within months or it could, if I’m very, very lucky, possibly be years before it returns. That’s what we are hoping for! Years! But we are logically preparing for the worst, a few more months. At the moment we are living life to the fullest we can, without focusing on negativity or the abrupt end it may bring. So again, I want to thank all of you for the generous hearts, love and support that helped me make it far enough to receive government assistance so things are not so bleak. You were my rays of sunshine when it was so dark. Thank you, thank you, thank you!

What do I believe?

noreply@blogger.com (Unknown) — Tue, 29 May 2012 15:18:00 +0000

What do I believe?

A friend recently asked me, "If you don't believe in God, then what do you believe in?" I believe in many things including a form of God.

I believe in a supreme being. I don't believe in evolution. I think we were created and place here by someone, not necessarily "the God."

I believe in the power or prayer. The brain is an amazing organ. I believe when a group of people pray together, they have power to do almost anything including heal other.

I do not believe in Heaven or Hell. I believe this life is it. This is all we get, You need to love it and live it a fully as possible.

I believe in reincarnation. Only a few people seem to be able to remember past lives, but I believe there is enough proof to show it exists.

I believe you experience many hardships in life and no one can really prepare you for them, or protect you from them.

I believe in the goodness and evil of other people. I know there are good, sweet, sincere and passionate people out there who will help you when you need it. I also believe there are very unhappy people out there who want nothing more than to be hateful and ugly to others all their lives.

I believe children give you a joy and love unlike anything else. I believe they can also give you heartbreaks that never heal.

I believe America is the best place in the world to live.

I believe in caring for your elderly parents, yourself. They took care of you for twenty years, and then it's your turn to take care of them.

I believe in true love. When you find the right person for your partnership of love, everything is better. You don't fight with each other; every day of love with them is like the first day you met; you want to be with each other all the time no matter what; you are each other's best friends; you are happy with them, all the time. I know this is true because I wasted 30 years with a man I loved dearly but who did not love me. We fought constantly, then settled into apathy for each other. But my true love is my most wonderful love, even after ten years, I want only him and no one else, and he feels the same.

I believe you get cancer because you inherited the cancer gene from someone in your family tree. I believe you are destined to get certain illnesses like cancer, diabetes, heart disease, etc., just because you have the gene for it. I do not believe you can change that with eating habits, exercise, or anything else.

I believe very excellent parents can raise five children the same and have one or even two turn out to be juvenile delinquents. I also believe a bad parent or alcoholic or drug addicted parent can raise five children and have 2-3 turn out to be excellent children. I believe, whether a child turns out good or bad has very little to do with how they are treated and raised. It's in the disposition of the child to become the person they become.

I believe parents should never have to deal with the death of their child. It's an ungodly hurt that one never recovers from.

I believe there are cures for many diseases like cancer, obesity, AIDs, etc., that the government keeps to themselves so the medical industry can continue to make money from their treatments.

I believe there are excellent doctors, mediocre doctors, and stupid doctors. Pray you get an excellent one.

My life has taken pause

noreply@blogger.com (Unknown) — Mon, 14 May 2012 19:15:00 +0000

Mother's Day came and went. All I could think about was my own mother who died in 2010 just before Mother's Day. Maybe I'll join her by next year.

At least I've received a small reprieve. I won't die tomorrow. The surgery was as successful as it could be, but of course the cancer is still there. I survived a cancer surgery that gave me a 10% chance of survival, followed by a second surgery for a diseased gallbladder. It's taken forever to heal from both of them. Most foods still make me sick so I'm on a very limited diet. The scariest part now is experiencing symptoms I had before the surgery like hot flashes and hair loss. I had both during the two years prior to diagnosis. The symptoms went away during chemo and did not come back until just recently. Now I'm stressed again. The surgery may not have bought me the additional time I needed and wanted.

In addition to that I am tired all the time. I thought that would go away, but the doctor says cancer along with my other problems (diabetes, multiple sclerosis and fibromyalgia - which have all advanced) causes the fatigue. I sleep a lot, just too tired to get out of bed. There are many things I want to do and go to, but I'm just too tired. My family is okay with it. They'd rather have me here with them as a bed-ridden companion, than gone. I don't agree with them. If I going to be this tired all the time, maybe I don't want to live much longer. I also thought the suicidal thoughts would leave me once I got a life extension. But this isn't any real quality of life. I just want to go to sleep and not wake up. I shouldn't feel that way, but the doctors say it's normal. Normal for who? Not me. I loved life and never experienced depression before. This just sucks.

When I can get awake for a little time, I spend it taking care of my father who has become steadily worse. He wanders the house, putting on ten pair of underwear because he thinks he leaks. "Thinks" is the key word, he does not leak. He changes clothes four times a day which creates a huge pile of laundry for me. He'll only wear jeans and western long sleeve shirts. Four days is 16 pair of jeans and 16 shirts. That's three loads of laundry in addition the household laundry which is another three loads for four people.

No jobs on the horizon and my husband is on his last tier of unemployment. I don't know what we will do when it is all gone. It ends in July. We are up to 400 job applications and the last 100 didn't even get an interview. Most of the job applications just want your resume and if you are lucky you get a "will call." We didn't receive one call back. And it's not my husband's fault. He has taken resume and interview classes, and keeps a very nice set of clothes for interviews. He applies for absolutely everything including janitorial and dishwasher positions. We are desperate for work. Despite that, I stress about him going back to work. Well I be able to care for the baby and my father in my current condition. I have no choice if he works. We are trying to gear up for that.

In addition to this, my son, the Marine, is now stationed in Afghanistan. For seven long mommy months I won't be able to see him. He knows how that effects me. Due the area he is in and high security, he can only contact me via high security group phones and internet. He writes me a few lines each day, and calls once a week. All the guys on the base share a couple of phones and computer access. Sometimes he has to wait until everyone has bunkered down for the night just to get access, but bless his heart, he tries. I miss him terribly.

I want to thank all of you for supporting me through this. I believe I never would have made it if it had not been for my readers and their comments and emails to me. The therapy of being able to connect with others and write what is on my mind has been so helpful. Please stick with me. My battle is not over yet, it has just taken a pause. I need the pause to care for my dying father. My life is not my own at the moment.

THANK YOU!

Another "emergency" surgery

noreply@blogger.com (Unknown) — Tue, 13 Mar 2012 05:57:00 +0000

Another surgery

I just spent another two weeks in the hospital for vomiting and stomach pain. After a CAT scan and ultrasound, they realized I had a bad gallbladder. I was rushed to emergency surgery to have it removed. They said it was hugely swollen. But they didn’t do any blood work up prior to the test which later showed my potassium was critically low. I had to be brought back four times with the paddles during surgery because my heart stopped. The gallbladder was extremely diseased. It had 25 stones and was full of puss. I had been telling my oncologist and everyone that I was experiencing nausea about three weeks after the surgery which continued to get worse each day. They gave me nausea medicine and pain meds, but no one checked to see what was wrong. They just attributed it to the cancer. The hospital stay was awful. I waited in the ER for 6 hours for a bed. Then I spent another two days being shuffled around to find a room and bed because UMC was over loaded with gunshot and other victims from a gang war, and just generally overflowing. I spent two days on the cancer floor, followed by a CAT scan and ultrasound, each of which had a two day waiting list. I had been 8 days by the time they rushed me to emergency surgery, and then spent three days in critical care, followed by two more days in the old cancer ward area in the South unit. What a crappy section of the hospital! The floors are cracking, there was no shower in our room, food sucked tremendously, the beds were so old and uncomfortable you could not sleep much, and people were dying right and left. It was so depressing.

I’m home again now but in pain from another surgery. At least I can eat a little. Problem is about 6 out of 10 times I eat I get sick for a day or two. The glucerna snack beverages would really help, but at $3 a pop it just cannot be. I’m suppose to drink two a day, but that’s $180 a month. Not much hope there.

A lovely sweet lady sent me $40 to my Paypal, but I had to acknowledge receiving it, which I missed due to this surgery again, and that took away the money I planned to use for glucerna. I couldn’t access a computer while in the hospital.

I still feel like crap. I still have cancer, I am still recovering from the surgeries. I am not cured. I merely received a small reprieve by agreeing to the surgery which may have lengthened my life a year or two, maybe more, if I am very, very lucky. But I don’t know if I want those two extra years if it means I feel like crap all the time and practically live in my bed.

NO Birthdays, NOValentine's Day, Just Bedbugs

noreply@blogger.com (Unknown) — Sun, 12 Feb 2012 12:07:00 +0000

First of all – THANK, THANK, THANK to Allie who sent funds to my PayPal account for groceries. I’ll probably use the full amount to purchase glycerna snack drinks. They are so expensive at $3 a day.

I thought once I started healing from the surgery, I’d begin feeling better. But that isn’t the case. I still feel so tired that all I do is lie in bed most of the day. I cut my medications way back. I only take one pain med a day. But still the tiredness and being unable to do much just hangs on.

I keep waiting for our luck to turn around. I survived the surgery and that’s certainly and big, big plus for my family. But our unending poverty just continues.

We recently found out we were infected with bedbugs. It’s horrible. It seems my older son and his girlfriend brought them in with them when they stayed here for December and January while looking for an apartment they could afford. They stayed at the Stratosphere just prior to coming here and it seems they must have been in the bedbug alert section of the hotel. They stayed in the baby’s room so that’s where we found the infestation, but of course, it’s all over the house. Estimates to rid us of the bugs ran $2200 to $900 dollars. More wasted money gone. We have to get rid of them, there is no choice there. Thankfully we found one that will take $100 down and payments of $100 a month. We agreed to him, being our only choice without much money. I hate to say, but I will sign the contract. Since I don’t own the home, I’ll have to have them spray and then only make a payment or two and let it go to collection. That way they can’t place a lean on our house. The two payments will cost us our entire grocery amount for the two months.

On top of that, I still do not have a primary doctor and the bills are getting higher and higher. As long as my oncologist is willing to continue my blood pressure and other meds, I’ll be okay. The cancer institute wants me to complete a couple more rounds of chemo. I just feel too weak to do that now and told them so. Plus they no longer can get the one nausea medication that worked for me for the chemo. Last time I was hospitalized as heart attack critical during one treatment. I don’t want to go through that again.

My husband’s birthday passed at the beginning of this month. I felt so bad. I was having a bad day and barely got out of bed. He spend the day cleaning all the surfaces with clorox bleach while we waiting for the bedbug exterminator. He has about 1/3 the house cleared and is working on the rest all by himself. What a lousy birthday. They scheduled the extermination heaters for the day after Valentine’s Day. We have to leave the house for a full 24 hours. I’m sending my father with dementia to stay at my son’s new apartment and then I have to de-bug him before he reenters the house. My son’s place will be too crowded plus, I know he hasn’t debugged so we can’t stay there. Everyone else lives too far away to put us up for a night. We luckily have a friend with a player’s card at Texas Station. They had a special for rooms for players for $13.99. He said he would use his card, pay and get the keys, then just give us the keys for $13.00. That was soooo very nice, even though we are so broke that $13.00 kills us, we can stay there. We won’t have money for food. So I’ll go through the cabinets and take my little tea pot plug in water heater and use it for Raman noodles and such while we are there. The exterminators begin at 11am, so we’ll have to hang out at a park until the hotel registration begins at 3pm. Check out is 11am, and they are suppose to be done by then.

My poor hubby. Happy birthday and Happy Valentine’s Day to him. What a shitty life we have. On top of everything else, the baby is sick. It’s that time of year when allergies make his asthma bad.

LEARNING TO EAT AGAIN - NOT EASY

noreply@blogger.com (Unknown) — Thu, 05 Jan 2012 07:02:00 +0000

Learning to eat again

SPECIAL NEEDS:

(1) Glucerna snack drinks (need three a day, way too expenses at $3 a drink)

(2) Diapers, size 5-6, boy, day and night time

(3) Boys panties, size 3-4 years. Potty training is slowly moving forward

(4) High calorie, no bulk, non dairy, non carbonated beverage

Just to make sure everything is clear. I received cancer surgery. THIS IS NOT A CURE. This is merely an extension on the short life span I was offered. Instead of 2-4 months to live I now may have 2 years or more. It just depends on when the cancer returns.

Struggling with the new menu for people with only one-third of a stomach and little to no esophagus. Most people may not have a problem but our limited budget and inability to choose foods is a problem. My NO foods are bulky foods (cereal, fresh veggies, fresh fruits, beans), no breads, no dairy products, no high sugar, no carbonated drinks, no stringy foods, no steaks, no spicy foods, no popcorn, no fried foods, no nuts. On food bank foods there’s not much eat. I had tortillas this week, mash potatoes and gravy, hummus spread, some small hamburger patties (wee chewed to pulp), Glucerna drinks, teas. That’s it. Now in addition to this, no smoothies. I’ve been drinking lemonade Koolaid for something tart, sweet teas, hot teas but that’s about it. I need to maintain 1800 calories a day and it’s just not happening. Plus the nutrients have a lot less space to travel in order to absorb them which is bad.

I have a J-tube in my stomach, which is sore around the opening all the time preventing sleep on the stomach or right side. It can be hooked up to a nutrient bag. Nutrient bags are very expensive and are not covered by the system. So it’s more of “a beg” for almost out-of-date ones and hope I don’t get sick from them. I’m so burned out on begging. Finding enough food to cover 1800 caories with out being able to use dozens of disallowed foods is just not working.

On top of all else, I was helping cut up cheeses and sausage from a Pepperidge Farm gift for dinner and cut my left hand forefinger to the bone across the knuckle. Now that’s bandaged up with a Popsicle stick. Probably needs stitches but I can’t afford it so the stick and tied on cloth with half to work.

To top this disaster of a day off: I had my first primary health visit with a County Doctor. You cannot make an appointment by phone. You have to drive in in-person. If you mention no one answers the phones, you get waved off. I had to wait a month to get the appointment. We showed up 15 minutes early for paperwork. Waited an hour and we were finally called back. When we arrive in the back, more paperwork, and then we are told our doctor left yesterday for two weeks away. So now we have no appointment and they will squeeze us in. We’ve been here two hours now and I ask how much longer “squeezed in?” I was told a long while. There were over 50 people in the waiting room 2/3rds were walk-ins. We were told that now we were in the walk in category. I said screw it, and walked out. I’m just out of surgery and can’t sit for five hours in a waiting room. I instead opted to set an appointment with my oncologist. On the way out we were discussing this and a woman interrupted us. She said she was told the same thing but had a different doctor. Her opinion was the clinic does this on a routine schedule just to get the people to walk out and open up more walk in appointments.

I may have had my surgery. I may still be here for a while longer, but life gets more and more sucky by the moment. I get the same crappy life, only now I get pain daily on top of it and still have the opportunity to starve to death.

I received the surgery!

noreply@blogger.com (Unknown) — Sun, 01 Jan 2012 02:05:00 +0000

It took many days and over a hundred letters and I had no hope in sight. My oncologist felt so badly for me. Come to find out, he was good friends with the only surgeon in Nevada who does this type of surgery - the surgeon who had already turned me down, and who I was not very trusting toward. My oncologist asked his surgeon friend to do the surgery for me. Part of this was facilitated by my cancer Patient Advocate from Paitentadvocate.org. There is in my humble opinion, no greater group than Patient Advocate. My advocate made hundreds of calls and helped with online research and contacted my doctors directly (with my permission), and helped facilitate what happened next.

My oncologist asked his surgeon friend to do the surgery for me for free. And his friend agreed. Or I should say, the doctor is not worried about my non-payment for his services. He will simply bill it, it goes unpaid, and ends up on my mounting bad credit history.

My surgery was performed on Dec. 7^th. I had a 10% chance for survival of the surgery and subsequent recovery. I survived the surgery and was awake and aware on Dec. 10^th, which was also the day I came down with an infection. They say if the surgery doesn’t kill you, infections after the surgery will. Due to an immense amount of prayer, I also survived the infection. The doctors removed six inches of my esophagus including the tumor, two inches all the way around it, 20 lymph nodes and 2/3rds of my stomach with the Iver-Lewis gastrectomy/esophagectomy. My stomach was cut open from my chest bone to the top of my pubis, my back was cut open diagonally from my right shoulder blade to my left hip, three tubes were attached for drainage of the chest at my right hip, and a J-tube stomach feeding tube is attached to the front lower portion of the stomach that is left. But I’m alive.

I came home December 22^nd in time to spend Christmas with my family even though it was from bed. Someone so sweet put our name in for charity groceries and gifts. We received a turkey and trimmings. It was enough groceries for almost a week. My son’s girlfriend came over and cooked everything. The baby received a Fisher Price Terminal and Airplane. It had dozens of little people in it. He loved it. He put the people in the plane and took it to bed with him he loved it so much. It made me feel sad that we can’t get him things more often, but most our cash goes for gas, food and diapers. His real dad actually sent him a gift, too – Kung Fu Panda double video box and a bunch of the McDonald’s Kung Fu Panda toys. He loves those, too.

I’m still in a great deal of pain. The pain meds make me too sick and dizzy to take. So I suffer the pain as much as possible and take nausea meds to prevent puking from the pain.

I’ve begun receiving the bills from the hospitals and doctors. So far, we are up to over $500,000. I have a form letter I wrote before the surgery explaining my circumstances and that they will not be paid, ever. I send it out to everyone. But I still have one bill collector that calls me no less than 22 times a day, even with the letter of explanation and the Cease & Desist calling notice. I can’t get them to stop, and when I pick up the phone to answer, they hang up on me.

Sorry, too tired to write more. I’ll write again when I feel better.

Continuous Deluge of Disaster

noreply@blogger.com (Unknown) — Mon, 24 Oct 2011 23:47:00 +0000

First and foremost, thank you Allie for the diaper coupons. I’ve been holding on to them, waiting for us to hit bottom to use them. And this week, bottom hit us hard. The diaper coupons really, really helped. The baby is so prone to rashes. We have to change him religiously or he gets nasty rashes that are so hard to clear up. He has a small rash right now. We’ve been staying on top of it. But we go through diapers like crazy until it heals up. We even try using homemade diaper inserts to conserve. Thank you so, so much.

I wrote earlier about HOPE. HOPE is the worst thing a terminal cancer patient can experience. HOPE is thrown at you from all directions by doctors, health care workers, everyone to prevent one thing – suicide. I don’t understand it. The health care workers are so adamant that cancer victims fight for that last breath, that last minute with family – to what end? The cancer victim spends their last days puking and shitting themselves to death. They are so sick that they want absolutely no company. Conversations and socializing are just a painful task that reminds them they are dying. What’s the point?

Against my best decision – to die with dignity and plan my last moments while I am still alert and able – I let my family talk me into staying long enough to try the surgery. Keep in mind, the surgery is not a cure. I am terminal. Surgery – if it is successful – only extends my life a few years. And during that extension, I must deal with the aftermath of the surgery. I will have no esophagus. Nutrition will occur through a plug in my stomach wall with a nightly drip. All food by mouth will be soft – baby food, pudding, jello, etc. Many surgeries will follow the first, in order to widen the scar tissue in the throat for breathing, to plug leakage, to clear paths for swallowing, etc. And I agreed to all this simply to make my family happier with the upcoming finality of my life.

The past two months have become sort of a lull while waiting for the actual commitment to the surgery by the surgeon. I sit here waiting for the continuing deluge of disaster. And sure enough, it hits … our furnace and hot water heater went out all at the same time. The furnace is 50 years old. We did an $800 repair on it December 2009. But now it’s lost its last leg and is leaking carbon monoxide. It cannot be repaired and must be replaced. At the same time, the water heater has also ended and must be replaced. Estimates for the furnace have run $3800 to $7000. The water heater will be about $400 installed. On top of all that, the 50-year breaker box on the house also has to be replaced to handle the new furnace and other electrical items. The breaker box has been flipping out every time we start the dryer or washer, or try to run a microwave or other type of appliance. The box is so old; they no longer sell the breakers for it anymore. Cost estimates on that have been offered at $700 to $1800. That’s almost $10,000 in repairs due all in one month.

At this point in my life, it just doesn’t matter. It’s like putting a bandaid on a gaping wound. If something costs $100, we couldn’t afford it. So $10,000 might as well be a million. The only way we can handle this will be to scam it. See if we can get financing for it and then hope we can make the $100 payment for a couple months that is also totally out of our reach. I will have to sell our food and some of our bare furnishings just to make a couple months of payments. We’re thinking about selling our queen bed and using some old twin beds for ourselves that we were unable to sell before. And I have one ring left, I’ve been unable to sell. I’ll try to sell that again. I hate having this to worry about when I’m going to be having surgery. The doctor says I need to be stress free prior to the surgery to help it be a success. Well, that’s easy for him to say when he drives to work in his BMW after stopping at the Wynn for lunch and giving his landscapers instructions for his new yard. He has no concept of being poor and dying poor.

My father always told me, “If it weren’t for bad luck, we’d have no luck at all.” And it’s been true all my life. Bad first marriage choice. Thirty years of crap with him. Years of fighting with an ex spouse over custody and child support. Years of staying with him – for the children’s sake. Elderly parents who are dying slowly and who need my care. A child with a drug problem. A grandchild with learning disabilities and seizures. But I dealt with these problems – all this bad luck, and I think I dealt with them well. I loved being a super mom. I involved my babies in sports, soccer, cheerleading, drama, dancing, and just anything that added to their lives. I drove a van, picked up their friends, planned great parties for them, camped with them – and enjoyed every minute with my children. My children and grandchildren have been the one bright light in my life. I loved rocking and smooching my babies and grandbabies through their sickness and happiness. As my parents weakened, I responsibly stepped forward to provide their care without regret.

Other than my children and grandchildren, I had little to no happiness in my life, and no good things to enjoy or celebrate. Then my second husband came along, and I thought my “luck” had changed. He was the dearest, sweetest, most loving man – and still is. I would think, “If I can grow old with him then I cannot want for anything else.” I didn’t care about losing everything and becoming dirt poor. I didn’t care about leaving my beautiful home and moving in with my parents to take care of them. I didn’t care about things like nice cars, fancy clothes, elegant dinners, or expensive vacations. My children and he were enough!

But bad luck is part of my make up. It follows me and pounds me into the ground. Not long after moving in my parents, I was diagnosed with several debilitating diseases all at once. So much for growing old with the new love of my life. Within the timing of one year, I was diagnosed with rheumatoid arthritis, severe degenerative disc disease, fibromyalgia and multiple sclerosis. Of course, multiple sclerosis was the worst diagnosis among the bunch. It meant that would die much sooner than the ordinary length of life, plus I could end up in a wheelchair for the last few years. The MS was very active when diagnosed and at the time I was experiencing weakened limbs, my legs collapsing under me, and vision problems. All this was going on while I was providing end-of-life hospice in-home caretaking for my mother.

I faced it all. If this was the end of life for me, I could handle it. I had anywhere from three to ten years before the multiple sclerosis symptoms were severe enough to take away all of life’s pleasures. I planned to enjoy my husband as fully as possible before I became incapacitated.

Then the bad luck struck again. Over and over through my life it strikes. Never giving me any rest. A big black cloud floated by me and grabbed my throat, squeezing the little life I had left out of me. CANCER. Not just any cancer. Not breast cancer or some cancer that has great bounds of donations and research for cures. No. It had to be a rare cancer – Esophageal Cancer. And the diagnosis had to come after it hit the non-curable point – Stage 3 to 4.

Treatments, a small lull, upcoming surgery … more bad luck. Over $10,000 in repairs strikes all at once for a new furnace, water heater and electrical breaker box. Things we cannot live without. Even if we try to finance the furnace and electrical items under my father’s credit, can we even afford the payment? Not likely. Plus we still need to scrape up enough to replace the water heater. Why am I depressed? Because I never see the rainbow. All I get is the down pour of continuous black rain and lightening. I’m so very, very tired. I just want to go to sleep and not wake up to another problem or more blackness. I would love to wake up to just one morning of bright skies, shining leaves, and flowers – but that’s probably just a description of someone’s funeral.

Still alive, maybe not for long

noreply@blogger.com (Unknown) — Tue, 11 Oct 2011 19:16:00 +0000

So, I lie here and choose – Do I want a few more months with my family? Or do I buy a lottery ticket that either takes those months away or makes them longer? What would you do? My family is pushing for the lottery. I just dont know.

I'm still alive and mildly kicking. Had the flu all week in our house. First the baby for it three days, then I had it for three days, and then it spread throughout the family and home. Then I had another PET/CAT scan on Friday, right at the end of my flu run. I had to drink that nasty barium swallow and they gave me dye for the first time. I didn't get dye or barium before due to my allergies. Those items just set off the flu symptoms again. I spent the entire night puking and with diarrhea. The whole weekend I was so weak. I am still suffering from stomach cramps, lack of appetite and weakness today.

I have another doctor appointment today. I dread going. I really don't want to know the results anymore. It’s always bad news. I’ve had enough of that. The results are setting me up for surgery with a doctor who is not as experienced in this type of surgery, at a regular hospital, rather than an experienced Esophageal Care Center. The chances of survival are much, much lower if not completed at an Esophageal Center by a doctor very experienced in the surgery. They are scheduling me here with the much less experienced doctor. My survival rate for surgery here in Nevada is probably 5-9%, but at an Esophageal Center, I could have as much as 25% if it’s a good center. You usually choose the surgery to be completed at the best center. I don’t have that opton.

So, it's a roll of the dice, almost literally. With no further treatment, they figure I will die before January. With just chemo, it gets real iffy because the chemo makes me so sick. With chemo, if successful, I might have another six months or I may have a heart attack from low potassium problems. Within the next couple weeks, months, the tumor will invade my lung wall further and make breathing difficult. It's already difficult to lie down and sleep, because it makes me cough mildly all night and also the stomach acid rolls up in my throat and tries to drown me. The acid also burns horribly when it gets in the throat. I will probably survive the surgery day itself, but it’s likely the surgery aftermath of leakage and infection will kill me within two to four weeks after the surgery. So here are my only options: (1) No surgery, but maybe chemo, and I get to live until Christmas or maybe a month or two more, or maybe die instantly of a heart attack from the chemo side effects. (2) Or, submit to the surgery and possibly die during the surgery (3) Or have them open me up and close me immediately during surgery saying the tumor is too difficult to remove and spend my last weeks recovering from my body being opened from neck to hip, (4) Or survive the surgery, but spend my last few weeks in the hospital dying from infections and/or leakage around the stitching, (5) Or, get very, very luck and survive the surgery, survive the recovery and actually hit the less than 16% who live another 2-5 years, maybe before the cancer spreads again and kills me. So, I’m rolling the dice for 4-6 months of life, 4-6 months of life with several months of puking, instant death within a week or two, slow agonizing death within a few weeks, or hit the lottery and live a couple more years.

The only sunshine on the horizon has been my Patient Advocate. She has worked so hard calling my doctors and everyone, hospitals all over, every place she can think of. I assisted, sick as I am at times, and tired as I am. I am sooooo tired. I sent out almost one hundred letters to organizations, groups, Esophageal Hospitals, doctors, and more begging for the donation of the surgery at a real Esophageal Center. But my Patient Advocate is also on her last options. She is currently in contact with UCLA, a last hope, but it’s not looking good. They have already turned me down personally, so I’m expecting that she will get the same answer.

Can you believe this? One of the responses suggested I obtain residency in their state to qualify for the surgery. Residency was six months. In the meantime, I would receive absolutely no medical care. I told them I had only a few months to live without the surgery. They told me it was worth a try. Numbnuts!

Too Depressed, Too Tired - Need Diapers!

noreply@blogger.com (Unknown) — Mon, 19 Sep 2011 04:11:00 +0000

FOOD COMMODITIES SCAM: I am so tired of deciding whether to buy more diapers, put a little gas in the car or buy fresh fruit and veggies. We picked up food commodities Thursday. I was so excited when I saw this huge tray of bread loaves. They asked how many we wanted, and I asked how many can we have. I took ten loaves feeling almost guilty about it as I planned stuffing and bread pudding in my head. We have a van, and they load it in the back. When we arrived home to unload it - the bread was all nasty moldy, squashed flat and repackaged in pieces, and very stale with some hard as a brick. I was so disappointed. Shame on them! Why even hand out such things? Plus we went to a lot of trouble to identify every one in the house to qualify for more boxes. We were told we would get one box per person. I didn’t know that so first month we received one box. This month, our second month, I had paperwork for the baby and we spent twenty dollars to change my husband’s license to out new address. We went through the line and we received one box again. This time, on the side of the box, there was a number three with a circle around it. It was the same size box as last month. When we opened it at home, it actually had less in it than the single person box the month before. I don’t get it. But as they say, “Beggars can’t be choosers.” At the very least, we should not have to endure being teased and having our time wasted due to misinformation – simply to get food for our household. It seems the government does not care whether they poison us or starve us. But I’m desperate. They got me. I’ll be back. Commodities can be picked up any Thursday between 9am-3pm. That at least allows me several chances to hit one of my good days when I am actually able to pick it up.

FRESH PRODUCE OFFERS: I’d absolutely love some artichokes, or squash, or other lively greens or fresh spinach. One wonderful lady offered to line up a daily veggie pick up for me, free. I really, really, really wanted it. But the location was all the way across town. My good and bad days are very twisted right now. I cannot commit to anything daily. If it could have been a day here and another day there, on my good days, I would have jumped at it. But then I have to consider the gas it was going to take to drive that far. More gas means fewer diapers. I shouldn’t have to decide between good produce and fruits for my family and the pittance I need for the gas tank. It’s just so unfair.

ENTERTAINMENT: People do not seem to understand that most entertainment in any form, even so-called FREE entertainment has a cost. It takes gas to travel to the destination, if it’s outdoors you need to carry water and snacks, if you are ill it eats up your energy, and most free events in my home area are dangerous to attend (especially if they are outdoors). Free events seem to bring together gangs and bad elements in our area. We cannot even walk peacefully down our street alone. A local street vendor was killed for his money, left to die in the street. I am so sick of never going anywhere or having anything. We cannot even afford a $1 movie theater because it takes gas, plus the $1 entry fee, plus we have to sneak in snacks and drinks for the baby. That may add up to just $3-$5, but $5 is a huge decision for us - food, gas or diapers - not movies. We use to spend a lot of time in the public library, using the computers, reading, attending little craft and puppet set ups for the kids. But the library doesn’t really like children my baby’s age, and especially seems to dislike them if they are hyper-active. The library, even though it’s free, is not really a place for us – or so we’ve been directed a time or two until it became an embarrassment to go anymore. When I feel up to it, we go to Spring Preserves play park or Lied Children’s museum on the first Sunday of the month (with some old Bank of America debit cards from closed accounts). They still work for the freebies and we use them until it stops. Summers, we spend a lot of time at the Water Parks where the baby can play in the water outside for free. When we have an extra $1 or so, we go to a public pool near our home, where it costs $2 for my husband and $1 for me and the baby is free. If the heat is not too much, we let him play for hours. But winter is coming. That means outdoor parks in the cold wind, possibilities of gangs nearby.

DIAPER COUPONS, UPCs, HELP! We could sure use some diaper coupons and UPC codes for gas cards. If someone would like to send us some, that would be spectacular and take a huge load off us. We are working hard to potty train him. We bought a used potty seat at the thrift store ($1) and several pair of cartoon underwear ($1 for all five pair). It’s so hard to train him with being so sick and in so much pain. It’s hard to be consistent and on top of him like we need to be. Plus his attention deficit makes it more difficult. We cannot force the issue too much, or he has a seizure. We don’t need anymore hospital bills or sitting in the emergency rooms for 6-10 hours.

Sorry, but I’m very tired this week. Maybe my end time is getting close. I’ll write again soon.

Offers too good to refuse?

noreply@blogger.com (Unknown) — Mon, 12 Sep 2011 00:51:00 +0000

CURING YOURSELF: When it comes to “curing” yourself and/or offers of alternative cures and treatments, they are plentiful. And many of them help tremendously, and some provide actual cures, and some are scams. I’ve been luck. Most people who have contacted me online with offers to help have been sincere and truly helpful.

OFFERS SO GOOD BUT REFUSED: There are sooo many wonderful people here on Facebook and in Internet groups worldwide. Several members of my Facebook page offered services such as recipes for raw foods, donations of organic produce, research time to find cost-effective or free items that can help me, free massages and reiki, and more. I have done the research. I know organic foods, raw foods, and smoothies made from fresh fruits and vegetables can help tremendously. I know Reiki, massages, support groups and other in-person offerings can help tremendously. And, yet … I’ve had to turn down many of these wondrous offerings.

WHY TURN THEM DOWN? Sometimes the offerings create an additional burden on me financially. An offer of daily fresh vegetables, fruits and organics is wonderful. But if I have to drive across town, daily, or even several times a week, to pick them up, then it becomes a hardship financially. Ten miles round trip, several times a week or daily, adds up to 40 to 70 miles a week. Make it a month, and that’s a full tank of gas at $55 a tank. The items are being given to me free but I cannot afford to go get them at that price. Sometimes people offer me assistance like a massage or laying on of hands or other personal activity. The problem I encounter here is such things must be planned and set up by appointment. I really, really want them. I know they help. But I have to turn them down because I never know in advance whether my day will be good or bad. I feel bad if I cancel at the last minute because I just do not feel up to going out. On really bad days, I wake up unable to move without great pain. On other days, I may be on my second or third day without sleep – insomnia has been an ongoing battle lately – and I am barely functioning, cranky and so tired. Going out for anything seems like an excessive bother. When I cancel, the person making the offer sometimes gets upset with me. They do not know how much I sooo appreciate the thoughtfulness and offers. But sometimes, when I have to turn them down, people become angry with me or think I’m too lazy to help myself or criticize my money management to obtain what I desperately need or want. That hurts me so much that I tend to forgo all offers of help now.

I WANT OR NEED IT, BUT CANNOT HAVE IT: I wish I could explain cancer better. There are so many things I want and need, but cannot have, simply because I do not have the energies to comply with what it takes to get them. On appearance I seem like anyone else. I may even appear fairly healthy to someone meeting me for the first time. The only ones who notice the physical differences are family members and long time friends who see the extreme weight fluctuations, and those who see the Smart Port on my upper chest and know what it is. They also seem to be the only ones who notice that I am lackluster and have lost all my normal energy. I wear wigs when I go out in public for my own vanity. At home I wear a scarf Allie sent me, because it is cooler. People may notice I wear a wig, but they do not associate it with cancer. Maybe that’s why so many cancer victims wave their bald or shaved heads proudly. It tends to command respect from those who are healthy. I was unable to gather enough courage to appear in public bald. In the past, I put on make up daily, dressed nicely wherever I went. I energetic, volunteered for everything, and I was an organizing and budgeting fanatic. And I loved to cook. All these things take energy. These are things in which my family and friends notice a big change. My cancer days run together and all look the same. I spend about 24-36 hours fighting insomnia. I spend that time lying in bed, writing and posting on the computer and reading, hoping it will make me sleepy. The medications I take cause this insomnia. Finally, I just pass out from lack of sleep. I sleep 12-20 hours straight through. When I wake up, I hurt from head to toe. It feels like my bones are rotting. I ache from the inside out. I take pain medications (the same ones that caused the insomnia), eat a little bit all day long. I try to eat constantly – mostly out of fear. I’ve convinced myself that if I continue to eat all day long I can keep the tumor passageway open – prevent it from growing shut, which will mark the end of my days. So, I eat, I clean a little, and I try to run errands. After about three hours of being awake, I feel so very tired. I feel like I’ve been running and working hard for days on end – but it’s only been a couple hours. I lie down and try to sleep again. Sometimes I can nap for a brief time, and sometimes it starts the long insomnia bout all over again. So, scheduling anything, even a doctor appointment, or friend’s visit, or my baby’s birthday party – is nearly impossible. Sometimes I just bite the bullet and make my way through it. Like yesterday – the baby’s outer family threw a birthday party for him at Chuck E. Cheese. It only worked because they offered to pick him up if I couldn’t make it. Most of them are from Hawaii and were visiting for a week with other family members. I struggled out of bed and managed to go to the party. It was a huge process for me. I was excited to get out of the house, and excited for the baby to see distant family. But by the time I finished dressing to go, I was exhausted. My husband drove us to the party. The baby had a blast, and so did his Hawaiian family members. I was just a party pooper with a pasted on smile. They don’t know me well, so they didn’t notice, but my husband could tell. We sat at the very end of the table and it was all I could do to last through the two hour party. I went out to the van twice and lay down for a bit across the seats. So, you see how hard it is to muster up energy or manage extra financial difficulties even when the offerings are free.

BABY’S BIRTHDAY: He’s officially three years old. His birthday was so sweet and wonderful. The family took so many photos to take back to his great-grandmother in Hawaii. They bought him tons of presents – lots or toys and some winter clothes. He sure needed the clothes. These clothes will be the only new ones he has for winter. Everything else comes from the thrift stores. Thankfully, he’s too young to care or notice. He loved everything. His favorite presents were the Nerf guns. He got all excited to see Chuck E. Cheese (a worker dressed up) in person. ChuckE placed a birthday medallion around his neck and they gave him a blow up crown for his head. He was the center of attention from about 15 people, and he was so happy he was dancing around. I’m glad we went, even though it tired me more. It made me feel happy and guilty all at the same time. Before the cancer, I would have been the one planning and throwing him a big family party. But those days are gone for me. I’m so thankful his outer family stepped up and did this for him. It was such a long ways for them to travel. When he’s older, my husband plans to send him out to visit them once a year. Is it wrong of me to wish the gifts had been all diapers, clothes and needed items rather than so many toys! I feel guilty that we cannot provide for the baby better than we have, and that toys are a luxury now instead of just fun.

Internet Bullies and *ssholes

noreply@blogger.com (Unknown) — Sun, 11 Sep 2011 23:19:00 +0000

SHUTTING UP THE NAYSAYERS: I have these two naysayers (Internet bullies) following me pretty relentlessly. One who started from Craig’s List (Fred) and claimed he had the exact same cancer (esophageal) as I, and he was also on Daily Strength.org. In fact, he recommended me to the Daily Strength list before he started slamming me. The other person (another Internet bully) thought he knew me from another website prior to my having cancer, and supposedly chatted me there. I rejected him, explaining he had the wrong person, and he continued to follow me on this and other sites just to harass me. He would not believe he had the wrong person. Dumb*ss. For a while they both stopped because I refused to respond them or post their crappy comments. But Fred started up again. I told him, “Enough” and to “stop” several times. He was so sure he was right. He claimed I was a scammer simply because I did not have the same cancer symptoms he experienced. He said I must be scamming because I can eat (although it was a little painfil before the EGD) while he was unable to eat at all. He is simply one of those people who are too stupid to be alive. He cannot believe everyone’s symptoms are different. Most of the slams he sent were anonymous, but his writing style and use of certain words exposed him as the same person. In addition to being “stupid” he was also a “coward” when he sent anonymous comments. Fred didn’t want me to know who he was when he bullied me, but I did enough research that I tracked both these Internet bullies down. I know who they are and which groups they think they discovered me from and how they followed my comments. Sadly, the second man had me confused with a really good friend of mine. I used her computer for a while until she gave me a notebook computer she rarely used, to keep for my own. My friend is actually the one who recognized the second bully’s writing style and his comments, and told me who it was. He has stopped temporarily, and my only option to stop him in the future is to report him to his server, which will cause him to lose his account. One more contact from him and he’s done for good. The other bully, Fred, seems to have been on DailyStrength.org for some time. I don’t know why he chose to harass me, but he did. So, I have a challenge to Fred. I’m beginning to wonder whether he is the scammer, scamming sympathy from the people on Daily Strength. From the beginning I have offered proof of my diagnosis. A few people have even taken me up on it, and I sent them my PET Scan results showing the tumor and degree of cancer. I challenge Fred to send me one iota of proof regarding his “same type” of cancer that I have. I’m willing to show him mine, now he needs to show me his (Fred). You prove to me that you are not scamming the people on this wonderful supportive site. Sadly, I think Fred simply has mental issues. You know the type. People who hang out on the Internet in various groups, usually anonymously, just waiting to pounce on someone with negative comments – they are called Internet bullies – and they are mentally ill. I know Fred will not show me proof. I know Fred will run and hide for a while. I know Fred will come back after he formulates what he things is a good cover-up or excuse for his terrible behavior. I know Fred will torment me again, or move on to torment someone else – because that is his nature. But I warn you Fred – if I you harass see you harassing anyone else ever again, I will have a few of my computer geek friends attack your computer and ruin you and your malicious fun. It will cost you more than you know. I will also report your behavior to Daily Strength.org and you will lose all the friends you made on that site. Enough is enough! Shame on both of you pathetic cowards!

Bad Week: Much Pain

noreply@blogger.com (Unknown) — Sun, 11 Sep 2011 21:31:00 +0000

BAD WEEK: It’s been a bad week, and today is even worse. No one told me about ALL the effects of the chemo. It seems chemo also reduces the body’s inflammation diseases like diabetes and rheumatoid arthritis. Even though the chemo is a horrible thing while taking it, and the after effects are equally horrible on your body – it did curb the pain of rheumatism for many months. During chemo, I stopped taking blood pressure medicine, diabetic insulin, and medications/steroids for the arthritis. It was hard to what a blessing that was because the sickness (puking and diarrhea) from the chemo overshadowed it. But now every thing is pretty clear. I’m taking all the medications again to control high blood pressure, diabetes and rheumatism. And I am in pain constantly. I can barely get out of bed in the mornings due to every bone and muscle in my body being sore. I ache from head to toe. Of course, that makes me worry more. I worry that the pain may be covering up signs of the cancer spreading. I worry that every little pain is something more than it should be. I worry most of all about shooting pains in my head. I have this one spot that aches off and on, that feels like my scalp is too tight or pulling in one little spot. Same spot all the time. I worry that it might be a cancer cell that spread to the brain. Cells in the brain cause you to die very fast. Sometimes, at night, my heart will beat very hard for a few minutes, like it’s really struggling, and I worry that the cells have metastasized to my heart. I also have this little cough now, just when I lay down. It’s just a puff cough, a couple times, and that’s all. But I was told that my surgery, if I can find anyone to do it for free, will be refused if the tumor further invades my lung wall. I wonder if the cough means it has invaded. And yet, my tumor in my throat is not painful. It does not seem to be blocking food at all. I mention this because it is unusual in cases like mine – even lucky some say. I know I should not expect it to last long. Eventually the tumor will block my esophageal passage and I will starve to death unless I have a feeding tube placed in my stomach. Of course, no one wants to that placement either. It’s going to be a tricky minor surgery that involves pressure in the throat as they bypass the tumor to insert it from the inside out. I know how this works, too. They wait until I am too far gone to do it, so my possibilities of suing them for doing it wrong become nil.

I hurt all over all the time. The pain feels like it comes from the bones. I essentially hurt from the inside out. It’s like my bones are causing the pain. It hurts so deep inside the bone areas and seems to radiate out. On top of the pain, I am still everywhere. All my joints hurt, too. I’m pretty sure it is the rheumatism and fibromyalgia. I’ve always had a very high pain tolerance. I’m allergic to so many medications, and one of them was Novocain used to numb you for dental work. So, until I was in my late 30s, I had all dental work done without anesthetic. My high pain tolerance helped a lot there. Little did I realize that the high pain tolerance is probably due to extreme and wide spread neuropathy from diabetes. Luckily, I have good teeth with only three small cavities over 50 years time. Also, by the time I needed my wisdom teeth removed (just ten years ago), they had Lidocaine and I could take that. I can deal with the pain. I hate it, but I manage to survive it. If I had to endure this type of pain from now on, I could keep going despite it. I prefer the pain to leaving my baby and not seeing him grow-up.

All I want from life now is: the contribution of surgery from UCLA to save my life. If I cannot have that, then I want a little warning before I am too sick to control my circumstances, so I can die with dignity. I prefer an insulin overdose to wasting away through starvation, brain cancer, or coma – with my family looking on It’s okay if I suffer, but when it gets to the point they are suffering for me and along with me – then it’s time to go.

You're dying. How about a vacation to die for?

noreply@blogger.com (Unknown) — Sun, 04 Sep 2011 00:30:00 +0000

BLEAK: Things are looking so very bleak. It’s getting very dark in my heart and soul.

INSOMNIA: I have had insomnia going on 48 hours now. I don’t know if it’s just because I am worried about the future or if it’s part of the cancer, MS and other problems, or just the fact that I’m out of sleeping pills. The doctor wrote me a prescription for Ambien over a month ago but I ran out several days ago and cannot afford gas to get it refilled till next week. I really want to stop taking them all together, but I find that if I don’t take them then I don’t sleep. I usually go two or three days without sleep and then take the pills for two days in a row, and then try to go without them again. Plus this makes them last longer.

PUT SLEEPLESS TIME TO GOOD USE: I at least put the insomnia to good use. My very sweet online friend Allie gave me some links for adult-make-wish-type foundations. I spent two whole nights looking for groups, foundations, and charity organizations to add to hers. I sent a begging email letter to every single one of them. About fifteen in all. Plus I sent begging email letters to several more hospitals other than UCLA. About five more. Plus I’m emailing all the cancer links I can find whether it’s my cancer or not.

WORSE NEWS: I fear further denials are going to push me over the edge. No one seems to be able to help. It gets darker and more hopeless each time I search for help. I hate it that hope is fading quickly. I’m only asking for someone to pay for the surgery, lodging and aftercare to save my life. I’m not asking for cash to be given or sent to me, but for them to pay the care services direct. I’m not asking for something frivolous like a family trip to Disneyland. I just don’t understand the excuses and so many limitations on these charitable foundations. I’ve already received responses from some of them. There are only about four adult type links that I might actually qualify for. About 70% of the links were for children only. Another 10% were for elderly over 65 only. But some excuses are more specific than that. Some do not pay for any medical expenses, transportation or prescription help. Some only pay for people in their state or specific city. Some only pay for children and some only children between very restricted ages. One only paid for patients admitted to the six hospitals in their area. Some are for breast cancer patients only. Several paid only for patients over the age of 65. After you add all those up there were only about four left, but I wrote to all of them anyway. Responses from the hospitals pretty much stated that I had to be indigent, a SSI, Medicare or Medicaid patient residing in their state, or insured or rich – if not within that criteria then I could forget it. Believe it or not, our income is barely, just barely, above the poverty line, and that excludes us from most charity benefits. I was denied for SSI because my husband draws unemployment and is not disabled himself. SSI requires that we have absolutely no income. I was denied Medicare because I’m not old enough. I was denied Medicaid because we are above the poverty level (if we were completely without income and living on the streets we would be eligible for more, but we’d lose the baby to CPS). And even then, we would not qualify for surgery for me out-of-state, even though no one here can do this rare surgery properly. I received a county medical card, but it is so crappy, surgeons here will not even give me a consult on it.

VACATION TO DIE FOR: I just don’t understand why taking a free vacation with your children, or going hunting, or having a big party is better than surgery to save your life. A vacation seems so frivolous. It’s like saying, “Hey, I’m going to be dead in a few months, but what the h*ll, I’m going to Disneyland.” There is no wow factor in that for me. All I can think about is, “This money could be helping me to live longer. I could spend more meaningful time with my baby.” Did you know - you can make a wish for a new car, vacation for the entire family, camp fun for the entire family, meet a celebrity, skydiving, take a jet ride with the Blue Angels, go to the Grammy Awards, go to a theme park, get a high-tech toy, travel, shop, get specialized furniture for a home, vacation in Las Vegas, go to a live football game and meet the players, and … well, you get the idea. But I cannot seem to get donated surgery so I can live a little longer for the sake of the baby.

SLEEPING BEAUTY: I am exhausted personally, and I have exhausted all avenues for help. I’m so exhausted I don’t even have the energy to cry anymore. I’m now just waiting for the last few responses or denials to my many emails – more likely denials. One organizer was honest enough to say it was very unlikely I would find surgery help due to my cancer being so rare. He said if it were more common like breast or prostrate cancer, I’d have a better opportunity for help. If only I could sleep for a very, very long time and forget all this.

Need California residency or a nice insulin overdose!

noreply@blogger.com (Unknown) — Sat, 03 Sep 2011 03:01:00 +0000

First of all: thank you Allie. I’m saving up again for more diapers and your gift helps a lot.

CONTACTS FOR SURGICAL HELP: I have contacted many web sites and the few esophageal specialty hospitals that are available. The results were very depressing. Most of the web sites referred to other web sites I had already contacted. The adult-type Make-a-Wish places will honor a useless wish like meeting a celebrity or going on a vacation, but will not pay for medical expenses/transportation/lodging. The only even mildly good answer I received - closed me out due to my state residency, and that was UCLA Esophageal Cancer Center - my first choice for the surgery. Here is what they said directly to me:

RESPONSE FROM UCLA ESOPHAGEAL CENTER: ["I am really sorry to hear about your predicament—its sounds really dire. If you lived in California, I would simply tell you to apply for medi-cal, and that would be that, you could get it and have surgery at UCLA. However, since you don’t live here you can’t apply for it. I’m sure that Nevada has a similar program, you could look into it. They most likely would not approve for you to come to CA for the surgery however. You might be able to bank on the fact that there is no one there who can perform the surgery safely, and see if they’d cover it. I know it’s a process to obtain medi-cal through the state (NV)—if you decide to try this route, I would push your oncologist to continue to give you chemotherapy (even low dose) so that you are at least getting some type of treatment while the paperwork is being processed.

I’m sorry I don’t have any further information for you. We do frequently get patients from NV but we don’t have any programs or options for folks without insurance, unfortunately.

One other thing just popped into my mind, the LA county hospital (affiliated with USC) does take care of indigent people- so you might look into that. I’m not sure if they take out of state folks or not but you could check into it."]

MY RESPONSE TO UCLA: First off, I'll cover the suggestions UCLA made:

(1) I already know that no one here can do or wants to do this surgery on me, nor would I want them to, due to their lack of experience, however, that does not mean Nevada will pay for me to go out of state. Nevada already said they will not. UCLA even states how difficult it is to obtain medi-cal in Nevada.

(2) And I do not want to get the surgery at LA County Hospital. It's imperative that the surgery take place at the specialty centers with the trained-for-this-type-of-surgery doctors and rehab assistants. The survival rate for the surgery is very low when it is not completed by properly specialized trained staff. And, as UCLA stated, they are not even sure if LA County handles out of state people - I can safely say they do not.

My only other option is to scam a residency. From what UCLA tells me and responses from all the letters I sent out, California residency is actually my only option. I know it's not entirely a legal thing to do, but I'm dying - so sue me or jail me, who cares. Even with the surgery, even with a couple more years added to my life, I’d die before they could collect, sue me, or send me to jail. And I’ll make sure my husband knows nothing at all about it, so the law cannot implicate him. I’ll just tell him I was advised to go to California and I needed a local address to prove to the doctors I had a place close by for recovery. The hard part will be getting residency for the surgery and applying for California medi-cal. I am sure I can use my husband’s aunt’s address in California, but I will have to drive back and forth during the application process, probably several times a month for interviews and health contacts. I’m not sure if we can manage the gas and lodging costs for a application process. I’d ask to stay with my husband’s aunt to avoid motel costs, but they have a small two bedroom house with seven people already. They’d say yes, as family, but I feel sick all the time from the cancer and I fear a crowded house would make me more ill, plus I’d be bringing my husband and child along, which makes the crowding worse. So, we’d need to manage a cheap motel for overnight a couple times a month. I know this would get me the surgery, but it doesn’t cover everything. I also need someone to come to the hospital daily for two weeks just after the surgery to help with beating my back, etc., to prevent pneumonia. Then, I’d have to manage home care in Nevada myself, afterwards, which is quite a bit of care. But I’d make the home care work somehow with friends – maybe some of you who live close by and would volunteer to help?

Who am I fooling here? This is so hopeless. Even if I scammed the residency, I can’t pay for motels and gas to get the application work completed on it. Like UCLA said – no insurance, no help. Out-of-state – no help? Even in-state, I cannot get help. Isn’t that sad? I’m nobody and not worth helping because I have no insurance. Plus I’d hate to go through all the trouble of applying in California only to have to be denied for some reason like the hundreds of times they denied me here. But I’d be willing to try it if I could manage a motel and gas. However – that’s as big a dream as not having the cancer in the first place.

Why go on? Why cause myself and my family further depression and suffering when there is no hope on the horizon? I know I am not going to let my husband watch me deteriorate away with this cancer. My oncologists have already described to me how the end process will be. It begins with a light cough (which I already have every time I lay down). The throat slowly closes again until I cannot eat, and a stomach/feeding tube has to be surgically installed. The feeding tube involves someone setting me up with overnight feeding IVs to keep me going. The cough becomes worse as the tumor invades the lung wall, and I have to be placed on oxygen. As my throat closes more, I am subjected to stints and other surgical inserts to open the throat for breathing. My voice will also leave when the tumor grows further. I slowly starve and die, while my family watches. And all of this will occur within 6-8 months, maybe sooner, maybe a little longer. What would you do if this were you? Luckily for me, I am diabetic and have a huge stockpile of insulin. Going out will be relatively easy with just a diabetic insulin overdose followed by a coma I never wake up from. I’ll be place in a county hospice, but it won’t matter because I’ll already be gone from this world. If I cannot manage the residency change and surgery recovery, then I guess I have just a couple months until this downhill skid on my health begins and ends.

New Answers Make Me Too Depressed

noreply@blogger.com (Unknown) — Thu, 01 Sep 2011 00:14:00 +0000

Final prognosis: Eat shit and die! Or in layman terms – Oncologist says, “We realize you are exhausted by the cancer, but without insurance there is nothing more we can do for you. You need the surgery now. You need to start the begging process and hope someone listens, feels sorry enough for you to provide the surgery as charity, and let’s you be their success story. We are sorry, we truly understand your health issues, but we cannot help you or direct you to someone who can do the calling for you. You have to do all the research, phone calls and footwork and begging on your own. We understand who hard it will be, but there’s really nothing else we can do for you since you have no insurance.”

I had to cancel last week’s oncologist appointment because I came down with the flu. Caught it from the baby, I guess. I’ve been sick the better part the week, but feeling better now. It gave the oncologist more time to find a surgeon consult for me. Of which, we discovered will be NONE.

This may be the last time I write for a while – or ever. The new doctors at the Cancer Institute have told me further treatment is useless if I am unable to get surgery to remove what is left of the tumor. I already know there are no competent doctors in Nevada for this type of surgery. My new doctors had to agree after they spent two weeks searching for a thoracic surgical consultation and could not get a single doctor to respond to them. Last visit, my new oncologists were all hyped up, stressing how urgent it was for me to see a surgeon and schedule surgery, and promoting all the benefits and longer life from the surgery. It was hurry, hurry, hurry, do not delay this. This is a great thing and you are ready. In fact, the supervisor practically guaranteed that I would get at least five years, if not more, if I got the surgery. I was hopeful, almost happy after researching what she said and finding it could be true. But on this last visit, she just hung her head and advised me to beg as much as I could for UCLA to do it free.

My outlook without the surgery, according to her, is fairly bleak. No hope. Just waiting to die. She says I’ll most likely be gone before Christmas. Don’t you just love it? Again, I am slammed with hope only to have them pull the rug back and say, Oh, so sorry. Guess more time living doesn’t apply to you after all, since you have no insurance.

My insurance (COBRA) ran out at the end of July. I just received my first bill from the first month of treatment while I was on COBRA – it was $127,000 for just one month, from just one bill collector. I have two more months’ worth of bills coming from the same group which should be much higher. I also received the insurance statement from the one thoracic surgeon that I spoke to in Las Vegas while I still had insurance. Get this – he charged the insurance company $1,000 for a $200 office consultation that lasted ten minutes. He didn’t even listen to my chest or anything else. The insurance then paid out $295 for the office call. He made sure he put enough charges on it to get his full office call payment instead of just the discounted office payment. How would like to be the charity patient he is working on when there is a high paying insured patient right behind you? Doesn’t matter because now he won’t even see me for that second consult because I have no insurance.

I always prayed I would not end up in the group of “have nots” when it came to medical insurance. I watched my daughter-in-law over the years, sitting in doctor’s office after office, waiting for hours for an appointment. The “haves” were always seen first. We’d watch people walk in well after her scheduled appointment time while she sat in the hard chairs waiting, and they’d be called before her. She was use to it, and seemed to be thankful the office would even take her. She paid $50 cash for each office call, which, if you check your insurance statement, is about what your doctor gets paid via your insurance for the same office call. What’s the difference? If you have insurance they add all kinds of buttery money makers like injections, blood oxygen test (yes, some offices charge $10 to clip that little meter on your finger for three minutes), maybe even an oxygen treatment, vaccination or flu shot – and throw in a few x-rays and a great referral to another doctor – and well, payoff! But no insurance and you lose. You get 5-10 minutes of hurry up and get out, and maybe a prescription you are unable to afford to fill.

I guess the begging starts now. I’m going to make a few calls, just like the cancer supervisor recommended – first to UCLA direct. Then I’ll do research and try to call cancer foundations and organizations, make a wish (for adults) groups (since it seems I qualify if I have less than a year to live). I feel like absolute crap all the time, barely getting out of bed most days. On a rare good day of little energy, I spend it budgeting our few bills, playing with the baby, getting groceries, prescriptions and survival goods. Now, I have to waste my dying time and lack of energies begging for help from dozens of organizations, many of which have already turned me down simply because I do not have the right cancer for them. You see – they have to draw the line somewhere (or at least that’s what they say). They can’t help everyone, so they choose one cancer like Breast Cancer or Lung Cancer to fight. And I bless their hearts for that. But I have to ask why they can’t widen their parameters and include everyone “dying” soon with cancer. I understand their reasoning but it just makes me feel more depressed and hopeless. My type of cancer only has about 16,000 diagnosed a year (about 200 just in Nevada) and out of that 16,000 more than 14,000 are going to die. After a little more research, I find that most of those have no insurance. I don’t want to fall into that group without insurance, without hope, but I guess I have no choice.

So here is where I stand: On days when I can function enough to do the research, I need to find a hospital, group or organization that will pay all expenses incurred with:

(1) Paying for surgery and recovery at UCLA’s Center for Esophageal Disorders; and

(2) Paying for transportation for me (to and from Las Vegas) to the UCLA Center plus that of a family member or companion; and

(3) Paying for meals and lodging for the family member or companion, since the surgery takes a full day and recovery is at least two full weeks of hospitalization and treatments, longer if I experience infection or leakage; and

(4) Paying for in-home hospice/nursing care while I recover for an additional six weeks at home on a feeding tube and learn to eat solids again; and

(5) If no family member can accompany me, since it is out of state, a nursing assistant or advocate who can remain with me during the in-hospital time who is suppose to assist with chest thumping and other healing measures. (My spouse may not be able to accompany me since we have a three year old and no reliable child care, as well as an 80-year-old father with dementia who needs constant supervision. My husband manages this most of the time, but it would be nearly impossible to find someone to sit with both of them for several weeks. The baby doesn’t stay with strangers often and my father’s dementia precludes changes which disturb him greatly.) I may be able to have my Marine son get time off to come stay with me, but that’s iffy, or an ex-husband whom I despise but who may be available and willing. I fear the use of the ex might hamper my healing though. I think I’d prefer a volunteer stranger.

There is so much that needs covered that I’m feeling a sense of doom and predetermination for my situation. I have no hope that anyone will be able to help out with so much. If only the other cancer center had hurried a bit, followed through on procedures instead of talking them to death and forgetting to set the appointments, if only … *big sigh* pigs could fly.

Is there any good news? Little to none. I guess I’m too depressed to search for any. Our finances are still the same. We struggle each month to pay our car payment, gas for job hunting, groceries, utilities (climbing higher each month), and diapers. Every time we have a little bit left over, which is so rare, we wind up begging and borrowing for more debt. Last month our window a/c went out. The house was over 85 degrees inside. The baby’s room was so hot. We had to get another one. The cheapest we found was $400. Thankfully we found some free food banks in the area and discovered commodities. We were able to survive on noodles and homemade spaghetti sauce, soups and mac and cheese for a couple weeks while we saved. And then a friend bought an old book collections, my mother’s ring, and some other items from the shed. It took every last penny we had plus borrowed another $100 from a couple friends – money we probably cannot pay back, but the house is cooled off again. We’ll have to scrimp on groceries again next month to pay back some of it. Thankfully the baby loves spaghetti and mac and cheese, and we can get fresh vegetables and fruit from the food banks.

All of that creates more running which stresses our gas budget. Every trip to the food banks or commodities or WIC, which occurs several times a month, runs down our reserves. But the food bank offerings have fast expiration dates and we don’t want to feed the baby anything after it expires, so we have to make repeat visits. I was hoping to get some help with gas through the Kellogg’s Gas Card program (see my blog entry at http://dying-wishes.blogspot.com/search/label/Gas%20Cards). But so far, no one has sent anything. If you could please save up codes from the cereals listed and send them to me, it would help so much.

I was so worried but I also had so much hope at the new clinic. The hope is completely gone now. I was feeling a little better, but not now – I guess hope does that. But that’s all loss now and I feel entirely hopeless. If things get any worse, checking out is the only option. I cannot imagine having my family watch my slow death of starving too death when I can no longer eat, cjokling on everything, living on a feeding tube they have to monitor, or having to visit me in a state run hospice center, then feeling guilty about my lack of care. But I am not going to put anymore burden on my husband, bless his heart, he has enough to cope with having a three year old and an 80-year-old to care for, and a shrinking budget.

If you want to help, research for me to find groups who pay for Adult Make-a-Wishes (I’ll ask for the surgery and accommodations), or groups and organizations that are willing to pay for such things for an adult in my position. I need to get the surgery scheduled as soon as possible, or as it advances I’ll be refused due to the hardening of tissues in my upper stomach, and irritation to the throat where the tumor is invading the lining soon to enter my lung.

Guilt Over Sharing

noreply@blogger.com (Unknown) — Fri, 19 Aug 2011 23:32:00 +0000

On another blog site that I frequent when I can, a writer commented that her husband complained about her illness and her writing about it on blogs. She said she feels guilty because many people are worse off than she. I responded to her that I do not feel guilty about that, although I do feel compassionate towards other people with illness and who are unfortunate, maybe even more so than I - and try to share what little I have with them when I can. I only feel guilty about being so close to dying and the cost of dying. It’s taking resources from the already thinly stretched financials of my family, and that makes me feel guilty. Spending money on my own medications when we need it for food and job-hunting gas, that makes me feel guilty. Sometimes I lie to my husband and skip my pain refills just so we can buy fresh bananas and oranges, or some meat for dinner. I know my husband would go without eating to make sure I was taken care of, so I feel guilty about lying to him. Sometimes I stretch a doctor appointment to several weeks away instead two weeks, just to save gas for job-hunting. Sometimes, when he’s out job-hunting, I turn off the little a/c unit in our room and endure the heat to the point of sickness, just to save a few bucks on the electric. I feel guilty about it because I am sick when he gets home and he doesn’t know why. I just blame it on the cancer.

The girl on the blog also commented that her husband doesn’t always believe how much her illness impacts her own life. If she says she is sick all the time, misses work too much, or just stays in bed, hr makes her feel guilty. She goes on to mention that hubby has been unemployed for a long time while she has been managing her illness and trying to work, too. As the only earner in the household doubling up her money with his unemployment, it must be extremely hard. I call him a heartless husband. Thankfully, I have an understanding husband who also experiences pain on an almost daily level. He has a permanently injured rotator cuff from his days of jujitsu competitions and heavy ironwork that made it worse. So, he understands my difficult moments, like today! I was fell out of bed to the floor. My muscles had just weakened so much, that when I attempted to roll over, put my feet upon the floor, and stand up, I simply fell into the floor. There I was, stuck between the bed and the dresser, about a two-foot walking space in that small 10 x 9 room we live in. I could not reach the dresser top to pull myself up, and I could not get a firm hold on the bed edge. I tried rolling myself over but there was not enough room. I struggled for minutes, then laid there exhausted. I was too tired to even call for help. After a couple minutes, my almost three-year old (three in Sept. 2011) leans over the edge of the bed and asks me for his “blankey” which happened to fall off the bed with me. I laughed. Part of my movement problem was due to him and his zealous night time movements which confined me to limited stretching space while I slept on several inches of bed beside him. He was sleeping with us because he is sick with the flu and throwing up all night. I kept him close to monitor his fever, and my husband, who could of slept in another room, remained with us because I needed help moving the baby back and forth, with wet rags for his head, and vomit clean up off and on throughout the night. With the noisy a/c unit, he cannot hear me in the other room. (Have I mentioned that my husband has a hearing impairment?) When the baby shares our tiny full bed it’s killer for both of us. My arthritis makes my joints so sore I can barely move. After a night with the baby beside me it’s almost impossible to move. Luckily, mu husband checked in on us and helped me up.

We noticed the baby’s illness yesterday, when we went to the new clinic to pick up my new prescriptions. The baby went with us, of course, since we cannot afford luxuries like babysitters. He seemed fine but his appetite had been diminished for a couple days. I wrote it off to the heat. We took him to the cafeteria first, because he refused to eat breakfast when he first woke up. I had a slice of leftover pizza wrapped in Saran wrap in my purse. I picked a table in the corner of the cafeteria for our seating, while my husband bought a large ice tea for us to share. The baby decided he wanted to go with “papa” to get the tea. While they stood in line to pay, the baby puked on his shoulder. I witnessed it and hurried over with napkins to clean it up. It was a small amount, so we contributed to the baby’s acid stomach he gets when he doesn’t eat regularly. We all sat down and baby sipped on his juice cup, tea, and ate a bite of pizza, then he threw up again, and again. Now, I knew it wasn’t acid, but more likely a flu or stomach bug. The last thing I need is to catch the flu, but when you have a small child there is no prevention or separating yourself from exposure. My husband carried and rocked him while I waited for the prescription. Then we hurried home. We spent the rest of the day alternating between wet rags on his head and body to cleaning up puke. Thankfully, by evening, the baby was feeling a bit better but the fever was still there, lighter, but still there. He slept with us and seems perfectly okay today.

The girl on the other blog also commented that her husband said she should feel guilty for talking about problems on her blog. I experience long bouts of insomnia. Depending on who you ask, it’s caused by worrying about dying, my illness, the results of my illness on those I love, leaving those I love with too much to deal with, the meds I’m on, or the cancer itself. Who knows?! But I spend a lot of those insomniac moments writing in my blog. It helps. It sometimes helps me relax enough to at least try and sleep, or I come across something or someone that helps me. I feel bad that she has to feel guilty when she shares just because her unemployed husband doesn’t like it.

I think we all consider people who are worse off than we are. It's called compassion. The problem I come across is people who feel they have suffered more from the same type of cancer than I, therefore my suffering is not exaggerated enough to compare; or people who want to defend all those out there who are worse off than I. I get many internet "haters" who feel it's their place to tell me to quit whining and get on with life because they know people who suffer more (and they do not say it in a comp[assionate way!). If I had more life to get on with, then that might work. I cannot help it that I am depressed over dying sooner than I ever imagined. I cannot help being depressed over leaving my husband broken and alone, a widow at age 37, his very first marriage, left to take care of everyone's mourning, my dementia stricken father and our three-year old - all alone! There is no family to help - most have died already. He will be a widow, single father, jobless, and nearly homeless - and I'm depressed having to put him in this position. I think I deserve the option of being depressed (duhb!). He has so much to deal with now, and even more, and all alone, when I am gone. There are no jobs to support the family. There is no insurance to help with the baby's health. Every penny must be managed carefully for food, gas and shelter. Everything is truly pitiful, bleak and hopeless. But I'll be damned if I'll feel guilty about sharing my life's problems with others, here on my blog, just because someone, somewhere is worst off than I am. I have compassion in my heart for almost everyone, and I even share with them when I can - but guilt? The only guilt I feel is leaving my poor hubby alone to deal with everything while I cut out early to the funeral urn. The ones who should feel guilty are the internet “haters’ who find enjoyment in “anonymous” torment of those less fortunate just for the fun of it. Cowards! Sign your name to your obnoxious, exaggerated and untrue comments and take the feedback. But their comments will not make me feel guilt.

Nexium coupons? Discounts? Please?

noreply@blogger.com (Unknown) — Fri, 12 Aug 2011 19:52:00 +0000

I am so sad. I cannot believe how quickly I was just dropped from my current oncologist and the support there. As soon as my insurance ran out, I was no longer a concern to them at all. I did ask if there was some way I could use my oncologist for second opinions. They said, “Sure,” but it’s at a cost of $95 cash per office call (which is a discount from the $235 it usually costs). I just cannot afford that. The people at my new location, Nevada Cancer Center, sound nice. Since they treat people without insurance or money to pay for office calls and treatments, I just hope the nice lasts. It’s bad enough having cancer without being stressed because cancer office workers treat you crappy. I really need my prescriptions filled. The pain from my fibromyalgia and multiple sclerosis is horrible. I’ve been without pain killers, blood pressure medicine and anxiety medicine for several weeks now. The County will not fill prescriptions written by doctors other than their own. So, I have a stack of written prescriptions written by my last oncologist that are worthless. The discount online drug center I found takes care of most medications but not pain killers or anxiety meds, and it takes a couple weeks to get your medications via snail mail. I sent in the blood pressure scripts to them. They are filling part of the order, but the rest is on back order and they do not know when it will be in again. That sucks. I knew it was too good to be true. I just need to order way in advance next time, before I am running out. I wish I had found them sooner.

I really need to fill my Nexium prescription for my stomach. It’s crucial to the area where the cancer is due to my severe acid reflux. I was on OTC Prilosec for five years, which worked great for a while, but then I developed a tolerance to it and it stopped working. Zantac, Axcid and the others never worked for me. I was put on Nexium about five years ago, and it works great. But I’m completely out. The Outreach prescriptions do not carry Nexium. Too expensive I guess. So, I’m looking for coupons to use or free one-time fills, so I can fill the prescription and pay for it myself until I get the County prescriptions free. The County scripts could take a couple weeks since my intake appointment is the 16^th and it will be about two more weeks after that for my general GP appointment. At the other cancer center, my oncologist wrote all my prescriptions. But at County they want to keep it separate I guess. That means many more trips to the doctor and sitting in more doctor offices for hours on end to get the same thing accomplished. I wish my husband could find work so we could get back on an insurance program.

I think the biggest crime against people should be wasting the time of those who are dying. If they know you are terminal, you should not have to wait hours to see a doctor or stand in line to receive benefits or help. It’s just awful.

If you have or come across a coupon, discount or free script fill, please send it to me at Elaine Swe, P.O. Box 363323, North Las Vegas, Nevada 89036.

My Favorite Marine mother poem

noreply@blogger.com (Unknown) — Fri, 12 Aug 2011 02:11:00 +0000

My very favorite poem is excerpted from "Letters" published in the book "The Warrior" copyright Frances Richey 2008. I recommend - buy the book, it will make you cry.

LETTERS
Last Mother's Day, when he was incommunicado, nothing came.
Three days later, a message in my box; a package, the mail room closed.
I went out into the lobby, banged my fist against the desk.
When they gave it to me, I clutched it to my chest, sobbing like an animal.
I spoke to no one, did not apologize.
I didn't care about the gift.
It was the note I wanted, the salt from his hand, the words.

I believe every Marine mother feels this with each and every letter from their child.

New Doctors, Next Steps

noreply@blogger.com (Unknown) — Sun, 07 Aug 2011 10:21:00 +0000

My husband went to the interview for the job. The interviewer said he really liked him and was pleased with his answers to the questions and his experience. He said he going to have the restaurant manager call him in for a second interview the following week. No one called. My husband checked back in with them and was told the position had been filled. This seems to be the standard lately. If we do get an interview, we do not get a call back. Later when we check out the place, we usually see a bunch of young girls working it.

I'm really fighting the depression. I am thankful for those of you that have helped during this awful time in my life. If it were not for you, I would not be here. I feel an obligation to hold on because the few of you who helped made such a wonderful gesture to me. You helped a stranger for no reason other than you wanted to. So, I'm hanging on - for you - and for my Marine son - a few more weeks, maybe months if I'm lucky enough.

My Marine son, my baby darling, will have additional leave saved up again by October. He plans to spend it with me - and I look forward to seeing him again, so very much. All the help from my readers and followers have gotten me this far, and I'm hoping you'll get me through to October even though it seems so far away.

I have gained back a little weight which is good. Almost ten pounds. I'll need it if I plan to continue with the last three chemo treatments. I'm going to talk to the new doctors about continuing the treatments, and hope they will allow someone who is indigent to be treated with those terrible and expensive drugs. The chemo drugs are about $60,000 and the follow up shot for white cell development is another $7,000 - plus anti-nausea medications, pain meds, etc. It's about $100,000 a month. If my potassium bottoms out again, it will include hospital stays to stabilize me which cost $12,000 last time. I've been told by others on county aid that the cancer center will not give expensive treatments without insurance. If that's the case, my doctor told me the little time I managed to acquire will be lost quickly. I'll be back to just a few months to live instead of an additional six months or so. I hate to think I wasted being sick those two months for nothing.

We're so broke. I have no reason to get up and move around in the mornings, so I just stay in bed all day. It's probably why I gained back some weight. We were squeezing out a few dollars twice a month to go to the local public pool in the evenings, as an outing for the baby because it has a waterpark inside, and to cool off. We only have a swamp cooler for most of our house temperature control. We had a small a/c unit in our bedroom, but when the humidity became so high, we ran it a lot to keep the baby cool enough, and it finally quit on us. Thankfully, this week is dry heat, and even though it's 103 degrees in the daytime and 80 degrees at night, it's not too bad. The movie theaters use to allow free admission for family summer event time, but they changed it and say they are now going to charge a $1 per person. We went there a few times because it was free and because it was air conditioned. One theater has a free water park for toddlers nearby, so we'd go to the theater and then to the water park and let the baby play for a while. But we cannot afford the theater or the gas to drive there, because it's all the way across town.

We're conserving our gas for possible job interviews. My husband, bless his heart, goes out to distribute flyers in the heat. It's usually about one day a week for a couple hours, but at least it pays the gas. We had to break down and buy another used stroller at the thrift store. The one we had broke a wheel. We hated wasting the gas to look for one, but we had no choice. If I have to go to the store or anywhere while my husband is at a job interview or doing the flyers, I need a stroller because I cannot carry the baby or his supplies.

I have my first appointment with the new doctors on Tuesday, August 16. It was the closest appointment they could give me. It will be four weeks since my last doctor appointment by the time it comes up. They tell me the first appointment is just an intake session. It will last about 90 minutes. I was also told to be prepared to wait a while in the waiting room, because appointments run over a lot. Wonderful! Just push the gun closer. I feel like crap all the time and can barely get energy to get out of bed, and now I get to sit all day waiting for an assessment before a doctor can be assigned to me. I wonder how long after that before I get an appointment to actual be a patient for a doctor. My cancer is exceedingly rare and my last oncologist said I need to get surgery to remove what is left of the tumor. But the only qualified surgeons for that type of intensive surgery are in California at UCLA. It's extremely doubtful, highly unlikely, mostly improbable that Nevada will pay for me to go out of state for surgery. The surgeons here are not experienced in this type of soft tissue surgery, so I more than likely will not be able to have the surgery. That means I just wait until the cancer begins to spread again, or the tumor starts to grow again, and then that's it.

I can't write anymore. I'm going to try to sleep. Another problem I've been experiencing lately has been insomnia. I lay in bed for days on end and just cannot sleep. I'm getting about three hours of sleep per two to three days. I just lay there and worry and worry about how to take care of everything for my husband and baby. I get calls from a counsellor for suicide prevention, but all she can offer is "Stop worrying and take care of yourself first." That's easy to say and hard to do. She tells me to use my support system of family and friends. She is useless. I have no friends. Just prior to my diagnosis, we moved away from my friends in order to provide care for my mother who was dying and my father who has dementia. My family all lives out of state and out of town, to far away to help. Everything ends up on my husband's shoulders as he takes care of the baby and my father and the household chores and cleaning - all alone, and tries to job hunt on the side. It's just such a losing battle. Every day is so hard. We have nothing to look forward to except time with the baby. That's been enough to keep me going, but I am just so, so tired and depressed.

The Good, The Bad, The Ugly

noreply@blogger.com (Unknown) — Fri, 29 Jul 2011 07:43:00 +0000

THE GOOD: Commodities - We picked up commodities today. Commodities are additional government surplus foods. Most anyone with middle-to-poverty income levels qualify. Each person in the household with a legal ID gets a box of food. We qualify for four boxes. You are permitted to pick boxes at a drive-thru every other month. Each month has different food. This month’s boxes had lots a cans of apple sauce, some diced tomatoes, several bags of macaroni noodles, one bag of split peas and two pint cartons of pre-made mushroom soup. WIC – We also qualified for WIC due to the baby’s asthma and undiagnosed seizures. That’s several gallons of milk, one loaf of bread, a dozen eggs, two boxes of cereal, some fruit, peanut butter, and juice. That helps a lot for the baby. County Health Card – My husband and I both qualified for a County Health Card – which is both good in some ways (prescriptions) and bad in others (horrible health care and long, long waits in over crowded rooms). Plus, I was told by my doctor that the County Hospital does not have to give me the rest of the chemo treatments unless the cancer is actively spreading. Doctor’s Report – My cancer is currently in remission. This means it is not actively spreading. This means if I can get the last three months of chemo that the doctor recommended, then I could possibly stay in remission for six months to a year, with a great deal of luck, maybe a bit longer. He explained carefully that this does not by any means say that I am cured or will be cured. That is not going to happen. My cancer stage has no cure, only remission and further treatments. But my chances for lasting a little longer than the original diagnosis are better. I have better than a 50% chance of making it a year. I have about a 35% chance of lasting 1-2 years, about of 17% chance of lasting 2-3 years, and a 5% chance of lasting 5 years. The doctor said he does not know anyone with as big a tumor as mine that lived past 5 years, in fact 3 years was rare. Also, getting to the 5 year mark means I would have to also submit to the surgery, but in my case there is a very high chance of perforation and infection if I get the surgery, and only a small chance that I would survive long after the surgery, due to the fact they would have to remove my entire esophagus. So, if I can get the rest of the chemotherapy that is recommended, I have a good shot at 2-3 years at the outside. With less than good health care, my time could be even shorter. But I am so happy about this little remission reprieve that I just can’t let the other stuff bother me right now. I want to dance. I want to super-thank everyone who has been helping me through this, especially Donna fro Illinois who supplied us with diapers, Natalia from overseas, and Allie for the head scarf. That wig has been awfully hot, but the scarf cools me. Thanks to everyone, including my dear friend Elaine near Florida.

THE BAD: Feeding Tube – I’ve been lucky so far. I’ve been able to eat because they burned away some of the tumor. Since the tumor shrank, I have not experienced the trouble swallowing food or drinking liquids. But I have been warned that the tumor will grow back and when that happens they will not melt it away again. I will need a feeding tube then. I have a very strong pain threshold from years of neuropathy, which is a blessing and not at various times. I think that strong pain threshold caused me to not notice the tumor soon enough which is bad, but it has also minimized my awareness of the pain. Medical Bills – The medical bills are pouring in. Thankfully, we were covered by the insurance through most of it, which only left us with a $2,000 deductible. But $2,000 seems like a million dollars to us right now. Other small bills are filtering in from various blood labs, consulting specialists, lab technicians, and radiologists. They added up to a little over $1500. I just add it to the list. Of course, they are starting to call every day as well, because most of this went to collection a month ago. Van – Our 2004 van is beginning to need some repairs. It needs a diagnostic for the transmission ($113.00) plus possible transmission repairs (the warning light came on). It also needs the power steering fluid and brake fluid changed (about $200). I never knew fluid changes would cost so much and the transmission light worries me. We are trying to save up for the diagnostic. This is our only transportation. When it rains it pours.

THE UGLY: Haters – The internet has haters and naysayers galore. One stupid ass keeps posting unkind and downright ugly comments to my blog (deleted by me right away, of course), all while addressing me by the wrong name. Since he obviously reads the blog, it shows how stupid he is that he can’t figure out he has the wrong person, and how much of an ass he is because he does not know a thing about this type of cancer. It seems he just wants to be an ass to someone, and thinks I’m that person he keeps addressing (wrongly). If there are some good computer hackers out there who might want to help me, maybe you could send this hatemonger a virus for me. He deserves a big pile of crap on his head, but I’d be content to just know who he is so I could report him to his server and get him blocked.

No Hope for Medical Care! Depressed to Suicidal Thoughts Again!

noreply@blogger.com (Unknown) — Tue, 26 Jul 2011 05:18:00 +0000

I’ve pretty much exhausted all avenues for medical assistance. The Financial Advisor sends me to Clark County Social Services. The Clark County Social Services sends me to Welfare. Welfare tells me I am not eligible for Medicaid because I am not eligible for Social Security Income. Welfare sends me back to Clark County Social Services. After days and many hours of running back and forth, standing and sitting in line, while puking into an emesis bag – all I gained was $61 in food stamps. If Clark County is able to approve me for a County Medical Card, which is a long shot, then I can obtain some cancer treatment at the local Kevorkian hospital - UMC. This is where they make you wait in the waiting room for ten hours or more, and then evaluate you and let you wait more hours, and then slap you in a bed overnight, ignore all your button pushing for a nurse or treatment, and then kick you to the street after they have done nothing except let an on-call intern look you over and release you. I know, because I’ve been there with my mother while she was dying. UMC drugged her out of her head and then released her to the street, while I was at home gathering some overnight clothes for her. After several trips to both UMC and Valley Hospital, it was not long until she died. I guess that’s what I have to look forward to. After being promised by Comprehensive Cancer Center that they would not refuse treatment even when I had no ability to pay, I am so depressed and sickened by all the lies. I called today to tell them where I was at with all the applications for medical care payments, and they told me I would probably end up using UMC on the County Card. I cried. I don’t want to change doctors. I don’t want to go to a hospital where I will receive only “palliative care.” Palliative means they will give me minimal care to make me comfortable while I die. That means they will drug me out of my head and send me back to the street. I hate my life. Cashing in is looking so good right now. The counselor keeps asking me if I “have a plan.” This means have I made a distinct plan for suicide. Of course, I have. I have terminal cancer. I believe anyone with a terminal disease has a plan. If our brain is not completely gone, of course we have a plan. DUH! You know what pushes you closer to suicide in a circumstance like mine? It’s the damn doctors, financial advisors, and county aid offices that offer you a glimmer of hope then slap you in the face with “No, no, no.” Why don’t they just say, “Here, let us torment until you die, or at the very least, let us push that gun a little closer for you.” The Cancer Center was so nice while I was on insurance and they were milking my insurance company for all that money – but now, they don’t give a crap. If I have no money, they are anxious to push me out the door and get rid of my burden on society. Well, they didn’t need to push me. I was more than willing to jump off that ledge when all else fails. But they tormented me in order to milk the last of the insurance. I hate them and I hate life! What happened to being able to die with dignity?

Help Me Gain More Visibility?

noreply@blogger.com (Unknown) — Mon, 25 Jul 2011 11:44:00 +0000

If you can, please help me give my blog more visibility. You can do this by clicking the BlogRollCenter Journal Box, and Blog Top List "Vote for Me" Box, and/or joining my Twitter link. All three of these can be found on the right side column just below the grass line. It would really be appreciated. If you come across link exchanges or free link backs or free directories, please submit my link there, too, if you can. The link is http://dying-wishes.blogspot.com/ Thanks. Every little bit, every little action, helps me connect with more people who may be able to give me ideas or solutions I have not guessed yet.

Gas Rewards Card – Can you help?

noreply@blogger.com (Unknown) — Sun, 24 Jul 2011 21:03:00 +0000

Gas Rewards Card – Can you help?

I am still trying to survive. I found a Kellogg’s Gas Reward Card offer online. If I collect enough Kellogg UPCs from the cereals listed below, I can receive $10 gas cards. It takes 10 UPCs per card and I can order up to five (5) cards total to my home address and another five (5) cards total to my Post Office Box. I will need fifty (50) UPCs for five cards. But I can send away for one with each 10 UPCs I receive. This offer expires 1/07/2012. Keep sending them in and my friends said I could use their addresses, too. Then gas for appointments and job hunting won’t be a problem. Please, if you have it in your heart, send me UPCs from the following cereals:

Kellogg’s All-Bran Original

Kellogg’s All-Bran Bran Buds cereal

Kellogg’s All-Bran Complete Wheat Flakes cereal

Kellogg’s Smart Start Strong Heart Antioxidant cereal

Kellogg’s Smart Start Strong Heart Toasted Oat cereal

Kellogg’s Corn Flakes cereal

Kellogg’s Corn Flakes Touch of Honey cereal

Kellogg’s Raisin Bran cereal

Kellogg’s Raisin Bran Crunch cereal

Kellogg’s Raisin Bran Extra cereal

Kellogg’s Crispix cereal

Kellogg’s Product 19 cereal

Kellogg’s Mueslix cereal

Kellogg’s Cracklin’ Oat Bran cereal

Kellogg’s Lowfat Granola with Raisins cereal

Kellogg’s Lowfat Granola Original cereal

Kellogg’s Fruit Harvest Strawberry/Blueberry cereal

Kellogg’s Rice Krispies cereal

Send the UPCs to Elaine Swe,

P.O. Box 363323, North Las Vegas, Nevada 89036

No Welfare, No Medical, No Help

noreply@blogger.com (Unknown) — Sun, 24 Jul 2011 20:50:00 +0000

Partially good news which actually led to bad news for me – my husband had his unemployment reinstated, based on that part-time job he had in January. We will get $150 a week. That almost covers the car payment, utilities and groceries. We also qualified for a free cell phone for medical purposes. My husband can hand out flyers a couple times a week for the rest. The bad part is, in Nevada, ANY income at all disqualifies me from health or medical support. If I’m homeless, living on the street or in a shelter, then I can qualify. Can you imagine being homeless in 110 degree heat with cancer? Or sitting inside the cooling stations with cancer? A cooling station is a library or community center where chairs and tables and free bottled water are available in an air conditioned room. However, they are only available during the day time, and lying down or sleeping is not allowed. You get to sit in a metal folding chair. That’s just great for multiple sclerosis, fibromyalgia, rheumatoid arthritis and cancer. You sit on a hard metal chair and hurt for hours. Luckily, I have a roof over my head even if it does not include air conditioning. I live in a mortgage clear home owned by my father. All we have to pay is utilities, while he pays maintenance, taxes, and insurance. Thankfully, his social security covers his basic expenses and he had Medicare for health. But he also is 80-years old, had a quadruple bypass, has dementia which worsens daily, and has a bad mitral heart valve.   When dad passes, we lose the income that covers the other basics of the house and will probably lose the house.

After putting together mounds of paperwork, over and over again, and submitting them to the County, State, local welfare offices, and financial advisor - and sitting for hours on end in every local welfare office - I am denied repeatedly and then referred back once again to offices I've already visited. It's like the great shell game. There are three nuts being scrambled and one has a marble under it. If I'm lucky enough to get the marble, I get the prize. But instead Nut #3, the actual prize, keeps referring me back to Nut #1 and Nut #2, which hold nothing except things to make you go nuts.

It's not nice to tease someone. I've taught all my children and grandbabies that. Teasing is not nice! But that's what these offices do to me. They tease me by telling me there is help out there. All I have to do is fill out several mountains of paperwork and then stand in line, and then sit for hours, and then complete an interview. You don't get your answer right then. That's just the fish hook they dangle in front of you while they tell you that you are probably eligible. Once you've done all that, they will not tell you the results. Instead they tell you your answer will come in the mail. I got the answers! Denied! Denied! Denied! Doctors are as ignorant about this as everyone else. When I told my doctor I was denied for everything except $61 in food stamps for the baby, he said, "I thought terminal cancer was a given. You have cancer, then you get medical benefits."

Here's how the scam to keep you hopeful works:  The actual truth of the matter is, the first person they send you to is the Financial Officer. When she finds out your greatest desire is to just check out (suicide) so you don't leave your family struggling to survive while you are draining their every resource - she tells you, "Don't you worry about it. Even if you have no ability to pay at all, we will not deny you treatment. Plus we will help you find the money you need to survive." Well, that's partially true, but not the whole truth. They prevent suicide by running you "literally" to death with the tease of welfare assistance. If you go do everything they tell you while you are as sick as I am, and you keep going back over and over again, until they have exhausted you to complete bed rest - then they can just wait for you to die on your own, too weak to accomplish it through suicide, and then they cannot be blamed. I'm on to their game now. And yes, they will continue to treat you, but that comes with a price, too - a literal price. They continue to add up all the money you owe, over $125,000 monthly for me with an outstanding bill of over $250,000, and tell you, your significant other can come in and sign a very reasonable payment plan of several hundred a month (for the rest of his life). Well, of course this is reasonable *sarcasm intended* they explain: because they did provide treatment and because you are thankful for that and because you are a responsible person who wants to pay their bills, so you shouldn’t have a problem making a commitment to this bill that will last for so many years it’s hardly conceivable. My husband can just pay it out of his meager unemployment and then go live on the street with the baby after I’m gone. This is the crap that stresses me out the most and makes me suicidal. If they had a brain cell in their head, they would know this. Or maybe they do and just don’t care. After all, they are not people living off unemployment, too lazy to go get a job. They have a job! And if they have one, why don’t you?

One agency worker actually had the nerve to tell me that if I could wait in line for four hours for my initial interview, then I could constructively use that time to find a job. DO YOU BELIEVE THAT?! I stood and sat and moved through the line with my walker and puke bag. I was so sick, and all these interview requirements and outings just made me sicker. It took me two full months to complete all the paperwork and attend in-person interviews at these agencies because I was so sick. It took me days on end to get all the paperwork together and get it copied, and I had to space out interviews because each one made me sicker and weaker. My walker is the type with four wheels and seat in the middle. I sit down between each time the line moves. Movement makes me sicker, so I puke repeatedly into my medical puke bag – mostly dry heaves, thankfully. I guess it’s a blessing that handicapped get a separate line. But that line does not differentiate between handicaps, we are all equal. And each personal interview can take up to half an hour or longer. So, if there are six people ahead of you, that’s about a two hour wait. There are usually 15 to 50 people in line. I can get a better, closer to the front spot in line by showing up two hours early and standing in line outside the building waiting for it to open. * just push the gun closer*

But you know what? The agency worker is partially right. Why waste my time and tiny bit of energies standing, sitting and puking in line for denials of help! I can use that time to beg for crappy, pay by the day jobs, and then lose the jobs due to my health. Or I can pass out flyers like my husband does, until I pass out?   Or I can stand on the street and beg for handouts until I pass out and the ambulance comes? Hey, at least I make a few bucks for my family before I kill myself further, and then the charity hospital has to try to recoup my minimal health for a few more days or hasten my death so they don’t have to deal with me. I call that a win-win situation! You’ve heard of “suicide by cop?” Well this is “suicide by hospital.” I just let myself end up in the incompetent, no caring, charity hospitals that needs to get rid of the indigents who are costing them too much.

That’s what I am now – an indigent! I can’t pay for health care. They cannot turn me away when I need emergency care, but they don’t have to provide any real type of medical care, either. They can just give me fluids and put me back on the street. According to the Journal of the American Medical Association, “Poor patients have a greater number of negative outcomes than patients of higher socioeconomic status. Indigent patients have shorter hospital stays than patients with private insurance, and they are less likely to undergo high-cost procedures when hospitalized. Circumstances such as unemployment, homelessness, or lack of means to pay for basic needs may lead clinicians to form negative judgments about patients' social worth and may also reduce patients' chances of benefiting from certain kinds of treatment.” (Full article http://jama.ama-assn.org/content/291/1/121.full)

This goes back to my doctors’ office. Neither the doctors nor the nurses can understand my lack of ability to go to appointments several times a week, or even once a week. They do not understand my inability to pay for the gas to get there (90 minutes round trip), or babysitters when my husband has a job interview that coincides with a treatment, or my husband using two days a week to drop off resumes which uses up our fuel for the week. How can someone who makes $250,000 a year understand living on $150 a week or nothing at all?

What are we going to do? I’m completely lost now!