CANCER UPDATE - OCT 2012

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?

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

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

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

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

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!

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

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

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!

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?

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

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

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.