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.