Lets play catch up

Today is a catch up blog. I have not felt like writing lately, instead I have been just thinking about things and stewing in my own grief of circumstances. A phone call from the oncologist revealed that my node is surrounded by fluid. It does not have the look of Non Hodgkin's lymphoma so it is being left to grow. I also have a tyroid problem now. It apparently is not working and medication was ordered. My vitamin D level is non existant also adding to the pain I am constantly in. Mega doses have been precribed. I have SLE Lupus so I can not be in the sun, a source of vitamin D. Since I don't get any sun my body does not produce any vitamin D. I long for a week on a beach somewhere warm. A place to forget about my medical and finacial problems. Depression has been my buddy lately. The cancer, Lupus, and lack of resources has taken its toll. Death seems to be in the air, I went to a funeral last week and learned yesterday that my friends baby died a few days ago. Why must death be so close by when I fight each day to survive. Maybe it is a passage, where you attend more funerals than baptisms. I hate baby showers but they are much preferred to a funeral.

Years ago when I began painting, my goal was to be in a mueseum with one of my paintings. I have had many art shows at galleries but have never been able to elevate to the mega nirvana of an art Mueseum. I wrote to the Latino Art mueseum after having a few shows years ago. I recieved one of those polite letters saying only established artists were asked to show their work. I was not considered established so it has only been a dream to one day show there.

Two days ago I recieved an email from the curator of the Latino Art Mueseum, when I saw it I thought it was just annoucing a new show coming up. It was in spanish and though I am billingual, I thought I was reading it wrong. It sounded like an invitation to be in a show. I was not sure to believe it so I used the handy google translation tool and translated it to english. I held my breath and reread the email. YES it was in fact an invitation to show. The thrill was overwhelmning.....and then the fine print, this was a juried show, therefore there was a showing fee. My medication bill each month is over 300 hundred dollars a month. I wanted to show in this mueseum so bad, but had to face reality. I did not have an extra 100 dollars to spare. My self protection buddy of depression kicked in and I wrote back to the curator a thank you note and said bluntly that I could not afford the fee, but thanks for thinking of me. I never expected anything back, but a few hours later another email arrived from the curator. She wrote that she was willing to waive the fee and I was still able to show 2 paintings. I am so excited about this. Finally something good has happened. My artwork will not be in a storefront gallery but in a pretigous mueseum.

Cancer is still a huge part of my life, but I am looking at whole picture now, that my life may not be easy or perfect, but there are moments of joy too. So for today, I embrace the joy.

Results are in

Okay the wait is over, the news is in. Today I recieved the results of my CT scan. The tumors that were in my lungs are gone but there is a 2cm node on my left lung. My oncologist wants to wait to see if it grows or gets buddies. I am trying to put on a brave face but deep inside I know this is not good. A node means lung cancer. I have NHL and it has gotten into my lungs, but never have had it turn into lung cancer. The stats on lung cancer survivors are not good. I am angry that the DR wants to wait but understand that I have had a ton treatment and my body can not handle much more. Fear has its hand around my heart....but the mask of bravery will come out for all to see. BE BRAVE......BE FAKE

Waiting..

Waiting, I hate waiting whether it be in a grocery line or for a phone call. I have no patience. I am waiting for the results of my CT scan. No news is sometimes good news but the nagging voice in the back of my head just wants an answer. It is like torture treatment to sit and wait for the answer.....Will I or will I not start treatment? The waiting is unbearable. I long for a distraction but each time the phone rings, I hope it is my doctor calling. There is nothing I can do but sit here and wait.

Does life have life insurance?

Does life have insurance? Today I am struggling with a few personal setbacks. Not to go into detail but life pretty much sucks right now. I keep trying to overcome the set backs, the disappointments but they are overwhelmning me right now. The message of things will get better is lost on me. I have been saying that for awhile and my life has not gotten any better. I question why some people have it easier, no disease, great love relationships and finacial security and I don't have that. Sleep is something that I wish for everyday and yet I get just a few hours a night, hence the rest of my day I am dragging. I keep hoping that today will be filled with good news and yet it still never comes. I look at facebook pages of friends and family and they all seem to be happy and have the secret to living a better life. Did I somehow miss that class? Life should come with a policy that when it starts to suck....you can file a claim and things get turned around. Maybe Wholesale insurance should start a program for insuring that happiness is brought to those who are suffering. I would buy that policy...after I visit the pawn shop to sell off whatever I could to pay for it.

Attidude

Attidude is everything.....I read it takes as much energy to have a positive attidude as it does to have a negative one. Lately I have been feeling extremely stressed out over my life. Trying to keep our household together, pay the bills, keep food on the table and not stress on my cancer journey has taken its' toll on me. I have noticed lately that I tend to be a pleaser.....doing things to make other people happy, putting their needs ahead of mine. I don't come first in their world and I don't even come first in my own world. Trying to fix things for others seems to be the priority. Or as I read yesterday, I am a codependent. I was married to an alcoholic and was physically abused. My way of coping was to hide my own feeling deep inside and try to make everyones elses world easier. I resented and maybe still resent that the ones I struggle to make their lives easier don't seem to ever try to make my life easier. If I stand up for myself, I am quickly put in my place....."don't be negative", "Don't ruin this event,"or even sometimes a snippy response when I ask about something. Recently I changed my message on my cell phone because I was bored and thought it was funny. A friend called to complain that she hated it and I needed to change it. I almost changed it, because I felt I needed to please her....and it struck me that I liked the stupid message, it made me laugh and I was tired of being the pleaser. My daughter has been out of work, I have another friend out of work also. Someone was kind enough to give me some links for state jobs. I shared it with both my daughter and my out of work friend. My friend has gotten several inquiries and possiable job offers from this. I casually mentioned how wonderful it was and that the money the jobs paid was great. I was reprimanded for saying that. Being told it is not about the money....I disagree, when you are struggling with not buying medicine so you can pay the electric bill, it is about the money. I understand that you take a job to be happy, but also understand that sometimes you take a job to survive. When you are in survival mode, taking jobs for the money is okay. Once you have a job, you can continue to look for something that will fit your emotional and personal needs.

I want to be first in someones world. I want my needs to be just as important as everyones elses. There is nothing wrong with doing something for myself. I should not feel guilty because I long for a mini vacation and a manicure......I should be able to speak my mind without someone scolding me for having an opinion. I deserve to be respected because I am the mom, the mother in law and the elder. Yes this is a cultural thing, there is nothing wrong with honoring my culture. I don't want to be snapped at because I said something that was not recieved or said the way the other person thought I should say it.

I am trying to hold on to my sanity and stay afloat, so if my attidude is a bit defient lately, I will no longer apologize. Love me for me, or just get out of my life because I can no longer please you. My attidude maybe percieved as being crappy...but this is me, unfiltered and trying to stop being codependent.

Banana Barium again!

This morning I had a CT scan. The procedure is not painful accept when they hook you up to an IV that pumps in a wierd fluid that causes you to feel heat beginning at your throat and ending in your pelvic area. The worse part of a scan in th drinking of the Barium. One bottle before bed the night before and one an hour before the scan. No food or water until scan is done. The worst flavor is banana, it is artifically flavored and you burp it up hours afterwards.
Now the wait begins. Where is the cancer now? This test will decide if I go back on chemo with a new drug. For once I am not worried. I have finally succumbed to the fact I will be on or off Chemo for the rest of my life. It is a part of me now. No longer a strange foriegn event, just a part of who I am. Now the wait begins......and I will just go with the flow. Nothing I can do will change anything.

Goodbye Helmut

Goodbye my friend. You left so unexpectedly and I never got to say a real goodbye. God has an angel now with a twinkle in his eye, making beautiful wood carvings and sailing on the clouds instead of the Delta.

Thank you for giving me my first exciting Sailboat ride.....and my carved wooden jewelry box. The box sits on my dresser, as beautiful as when you gave it to me over 15 years ago. Thank you for sharing your stories of travels around the world and speaking more languages including spanish perfectly......a German man who spoke like a spanish native.

You left behind a wonderful wife and two great kids. Thank you for raising my best friend to be as generous, loving and kind as you were.

Today we will honor your memory, but the memories you gave us all will live forever in our hearts. Until we meet again my friend......watch down over us all.....loved ya more then you knew.

Dia de los Reyes

Today for the Latino culture is Dia de los tres Reyes, three kings day. When I was little I would place a box with grass under my bed just before I went to sleep and in the morning I would wake up and find small gifts. The day is last day of Christmas for Latinos, when The Three Kings brought gifts to baby Jesus.

When my daughters were little, we celebrated this tradition, but it faded away as believing in the Easter bunny and even the Tooth Fairy.

This was the hardest Christmas I have had to endure in a long time. When I was married, I traded my soul and body for a better life. I endured domestic abuse because the poverty of young was traded for a better life, filled with designer purses, new cars, and a no limit spending habit.

When I finally got the courage to leave, I was on a small pension from my old employer and Social Security. My daughter Jennifer offerred me her spare bedroom and with a strict budget, clipping coupons and shopping at bargain grocery stores my life changed. I no longer could afford to spend things on a whim, but with the mounting debt of medicines and medical co-pays and Jennifer picking up the most of the household bills like rent, utilities, we did okay.

Then the bottom fell out a few days after Thanksgiving. Jennifer was laid off. My income would have to take care of everything. I had gotten my spending down to a science. Every penny was accounted for and even saved a few dollars each month to take a yearly vacation.........but without her income life changed quickly. The extra expense of rent and utilities far exceeds what I bring in each month. She has applied for every job possiable, friends have given her job leads but nothing has come through. Christmas is not about the gifts but this year, I could not afford to buy anything for anyone. We spent Christmas at a family members house and it had been decided that the adults would not exchange gifts......but they broke that and bought gifts for each other, and as Jennifer and I watched and smiled did not participate in the gift exchange.

I could not wait to get home and even though we had a small tree, It quickly was taken down because it just stood as a reminder that life had hit another speed bump.

Each month, I refill my precriptions. The bill ends up being about 200 dollars a month. I had enough money to cover in December, but yesterday I needed to refill and I found myself deciding what I could do without. As a cancer patient, with high blood pressure and SLE Lupus deciding what drugs I could live without was hard. I applied for aid but I don't qualify because I am not poor enough.

I have 6 doctor appointments this month and each appointment has a copay......A new lump has appeared in my armpit area so I am affraid not to go to the appointments.

We made some changes on our monthly bills, cutting down as much as we could but I am embarassed to say, that I sitll don't have enough to cover it all.

Last week, my other daughter went on a vacation, It was humbling to say the least that I went and took groceries that would expire because we needed lunch items. For the last few days I have been unable to sleep because my brain will not turn off. Jen has a few interviews and I pray that something comes through. She has applied to every thing even working in fast food and still nothing....both our self esteems have plummeted to the ground.

Each month for the last year, my womans group and I volunteer at the shelter for homeless women. One night after volunteering, another woman said that most women in the shelter were just not trying hard enough to find a way out of being homeless. I was offended by the remark then and even more so now. I don't have a safety blanket, I am unable to work and with the job market as it is I am closer to being a client in that shelter then ever.

So last night I prayed that perhaps on the Dia de los Tres Reyes, perhaps things would change.......Jennifer will find a job, and slowly we will dig our way out of this finacial mess. Somehow, someway things will get better......but for now, I am trying to believe that this last day of Christmas will bring something good......even though I did not put a box of grass under my bed.

happy birthday dad

can't sleep

Mourning

My laptop has been my partner for the last few years. If I had to list what I needed to live my laptop would be at close to the top of the list. I am addicted to reading my emails, reading Facebook, following blogs, writing my own blog and of course storing my photographs and pictures of my paintings. A few weeks ago, my laptop started having problems, it was running slow, and I had to refresh pages sometimes just to see a page. I am sometimes am slow, so I thought, this is ok........my laptop would not abandon me. It stayed up late with me at night when I could not sleep, it woke up early to deliver everyday the mass of emails, it was just like a part of me. I knew that I should back up my files because I take tons of pictures. Not just of my family, but of things I find interesting like a puddle of water that has a rainbow in it. I again suffer from the tomorrow disease.....I never backed up my files.

Right before Christmas, I poured myself a cup of coffee, and turned on my laptop, I waited for the screensaver pictures of daffodils that I had taken at Daffodil Hill years ago to load up. My stomach started tightening.....the screen was blue, not a bad shade of blue but nothing happenned. I tried everything I knew to restart it, but my faithfull laptop just would not turn on. A quick call to the pc repair people was made and I ran to the shop as if I was taking my baby to the hospital. The news was not good. It would cost more to repair than to buy a new one. Debating the pro and cons of getting a new laptop was hard. Then the pc doctor said he could pull my hard drive and save my files. It would become an external hard drive and every picture and document I had created would be saved. I could live with this, I would still have a part of my old faithful but also have the speed of a new laptop. Feeling a little guilty for shopping for a laptop was like I was cheating on old faithful, but I found a sleek new model.

I was going into debt for this new gadget, but checking Facebook on my cell phone was not the same....I needed this purchase.

Yesterday, I decided I wanted to look at some picture to add to a blog piece. Plugging in the external hard drive was like introducing my old faithful to my new love. Instantly I knew that they did not get along. I tried to open up files and the drive will not open. Old faithful is holding my lifes work hostage. It will not let me see my pictures or documents. I mourn for the vacation pictures of Hawaii and the Carribean. The family pictures, the babys first photographs are held in this little device that will not cooperate. The PC doctor was called and he promised to call back but has not. I am in mourning for photos that I will never be able to reproduce. Again I am reminded that the attidude that I will do it tomorrow has come back to bite in the arse.....

When will I ever learn??? I pray that the external drive will work.....until then I am in mourning.

Life Insurance

I have a friend who writes several blogs for a living. This is like a dream come true for me since I have been blogging for years. A personal diary saved in cyberspace to pour out my feelings, fears, and joys. On one of her blogs she has annouced a contest about what you know about life insurance. Life insurance is something that I have always wanted and do not have.

Years ago I graduated from college and got married. I started out a career and started amasing all the things I thought I needed to be an adult. I got the cars, the clothes and the house. My work offerred a life insurance but I was young and healthy and thought I had plenty of time to buy life insurance. In my mind, I was invincable. Sickness had never entered my life, so buying insurance was something I wanted, but it was not a priority. I would buy it tomorrow was my motto. Tommorrow never came.

I read Angela's blog daily. Each morning, I get my coffee, and I search facebook for her several blogs. It is like reading the paper, but getting her view on life. It has also become something of a temptation of something I will never have. One of the blogs is Wholesale Insurance. I have relearned more about insurance and I resent the fact that I can not get insurance. It is like holding out a chocolate bar just out of arms reach to a chocoholic.

When I was young I had different priorities. I knew I needed life insurance but I also wanted to go on vacations, shop and get all the trapping that life had to offer. My parents had life insuance and I knew how much it helped when my dad passed away that my mother recieved all the benefits because they had planned and made life insurance a priority.

I was happy in my life when illness came to live with me like an unwanted houseguest. I was diagnosed with SLE Lupus, an auto immune disease. When first diagnosed not much was known about the disease and it was like getting a death sentence. Now everytime the question was asked "Do you have a serious disease?" on a questionaire I had to say yes and I could not get life insurance. I thought I would make up for not having life insurance by saving, but that did not take into account that I would later get cancer in 2004 and seperate from my husband.

Now daily, Angela's blog taunts me for having the I will do it tomorrow attidude. I don't qualify for life insurance and now that I have a grandchild, I will not be able to leave something for her or my daughters. It really is self torture that I read the benefits of having life insurance, yet it is something that always will be a carrot in front of my nose that will never happen.

My life's lesson is not to wait until tomorrow to do the things that are important, because you never know when your chance will be taken away. The chocolate bar is encased in an unbreakable glass case, and I do not have the key to open it.