Somewhere out there!!!

Friday, June 22, 2012

Trying to find meaning in life

I search beg and plead, just when I think life is taking a turn for the better, WHAM!!!!!!!!! Things go insane. I was working, happy, Leah is doing well. I became racked with pain and had to be taken to the hospital. the same crap. Tests and Bloodwork, scans and everything. Bone marrow biposies, spinal taps my body just felt like it was dying. I had a baby to care for I can't be sick. Finally the tests and stuff all led to one thing. AML. I have only shared this with a few very close friends and family. I start phase 1 of treatment on Monday Chemotherapy. I am scared as hell. I don't want to die at times I feel like I have been given a death sentence. I just want to be a mum. I want to have a normal life. I DO NOT WANT TO BE SICK ANYMORE!!!! I have very few friends. I am losing more and more. I just hate the way my life is going at times. I sit and wonder is this all my fault did I cause this.

AML is Acute myeloid leukemia, cancer basically. Basically the Doctors have told me this. Acute myeloid leukemia (AML) is cancer that starts inside bone marrow, the soft tissue inside bones that helps form blood cells. The cancer grows from cells that would normally turn into white blood cells.

Acute means the disease develops quickly.

Persons with this type of cancer have abnormal cells inside their bone marrow. The cells grow very fast, and replace healthy blood cells. The bone marrow, which helps the body fight infections, eventually stops working correctly. Persons with AML become more prone to infections and have an increased risk for bleeding as the numbers of healthy blood cells decrease.

Most of the time, a doctor cannot tell you what caused AML. However, the following things are thought to lead to some types of leukemia, including AML:
Certain chemicals (for example, benzene)
Certain chemotherapy drugs, including etoposide and drugs known as alkylating agents
Radiation
Problems with your genes may also play a role in the development of AML.
You have an increased risk for AML if you have or had any of the following:
A weakened immune system (immunosuppression) due to an organ transplant
Blood disorders, including:
Polycythemia vera
Essential thrombocythemia
Myelodysplasia (refractory anemia)
Exposure to radiation and chemicals

Th doctors feel my gaucher's disease contributed to this. I just wish at times my body could be normal.

Treatment involves using medicines to kill the cancer cells. This is called chemotherapy. But chemotherapy kills normal cells, too. This really scares me.
Other treatments for AML may include:
Antibiotics to treat infection

Bone marrow transplant or stem cell transplant after radiation and chemotherapy

Red blood cell transfusions to fight anemia

Transfusions of platelets to control bleeding

When the signs and symptoms of AML go away, you are said to be in remission. Complete remission occurs in most patients.

With treatment, younger patients with AML tend to do better than those who develop the disease at an older age. The 5-year survival rate is much lower in older adults than younger persons. Experts say this is partly due to the fact that the body of a younger person can better tolerate strong chemotherapy medicines.

If the cancer does not come back (relapse) within 5 years of the diagnosis, you are considered permanently cured.

Complications of AML and cancer treatment include severe infections and life-threatening bleeding. Sometimes, the cancer comes back (relapses) after treatment.

Symptoms

Bleeding from the nose
Bleeding gums
Bruising
Bone pain or tenderness
Fatigue
Fever
Heavy menstrual periods
Pallor
Shortness of breath (gets worse with exercise)
Skin rash or lesion
Swollen gums (rare)
Weight loss

I have no idea where I go from here. I pray and beg G-d for healing. I want to better my daughter needs me I am all she has. Now people are talking to me about wills, advance directives. I am 22 yrs old I should not have to deal with this. WHY?

If you are reading this, I hope you are a friend. I need some. I need help, to be lifted up, to be encourages, and to help me fight. I really need this now more than ever.

Tuesday, June 12, 2012

Hope

Wow it has been so long since I last wrote. My little girl arrived very early and very tiny. She is 2 weeks old now and growing. There have been some scares but all in all she is doing quiet well. She arrived early on 29 May, 2012. They were not sure if she would even breathe, but breathe she did she let out a soft cry. I truly believe it was to let me know that she was OK and not to worry. She is my angel baby. I never dreamed I could love another human being as much as I love her.

The few days after her birth are a blur to me I couldn't see her I was in intensive care and I was bleeding. I had a partial abruption to the placenta which was causing issues with my uterus contracting and the bleeding to stop. The doctors tried so many things in the end they operated and saved my life, and repaired my uterus. Will I ever have more children they tell me only time will tell. I do hope so I would love to have more. I want a big family like my cousins all have. I want the family that neither set of grandparents or my parents were able to have. I sometimes wonder if life for me would have been different if my brothers had survived. If they had not been born with Tay-sachs. Would I even be here? Would my mum be happy? Would I be the perfect Jewish daughter? I can't sit here and wonder and think about it. It does me no good.

Well with Leah's early arrival I was able to start my internship. A week late but I was able to start. I am loving it. I spent this past weekend at the Belmont Stakes. Horse racing is something I have always loved and is a favorite with my mummy2. Then Saturday night and Sunday at Pocono International Raceway in Long Pond, PA for the NASCAR Pocono 400. All I can say is it was amazing. I mean utterly amazing. The only thing that could have been better was having my special guy there to share it with. I was able to go through the pit and paddock area and got to sit in the spotters box during the race. Experience of a lifetime. I am planning on hitting Indianapolis on 7/29 Pocono again on 8/5 and Watkins Glen on 8/12. In case you haven't noticed I love NASCAR. I am also going to see the Jets and Eagles play preseason. Gonna have me a healthy dose of Tebow.

As for my job. What can I say, it is a dream come true absolutely amazing. Words can not describe how much I love doing what I am doing. Being part of a nationally syndicated sports program utterly amazing. I had the opportunity to meet Rex Ryan from the jets. Now waiting for that Tebow moment. OMG I think I will die if that happens it would be so awesome.

I am still struggling with my ED. I won't lie it is hard. Even more so now. Looking down at my belly with Leah not in it and seeing the flab, my boobs being larger then I feel they should be. I am still getting treatment and still working on it. I know I have to. I need to be there for my daughter. I am all she has. I have to do this for her more than anything.

Oh I can go on and on and on about things but I will leave you with this a favorite quote of mine

How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these. ~George Washington Carver

Thursday, May 24, 2012

Living anew

The past few months I have been through hell. I seen my world come crashing down when my ex instead of proposing, dumped me via text message, I've been sexually assaulted, got pregnant, been through horrific accusations and abuse on social networking for just trying to be me, I've seen the reemergence of my eating disorder, something I thought I truly had beaten, been through a semi quasi marriage and divorce, lost friends, went into treatment for my eating disorder, had a close friend just completely belittle me and make me feel lower than low, and now diagnosis of a genetic disorder, which was found by accident, and finally been told because of the said disorder I have an old persons disease osteoporosis, fractured my femur, cracked my knee cap, and now fractured my forearm, all from simple little trips and falls. Now, I have to give up my dream summer, My dreams, and now I am losing hope.

How can one person be expected to handle this? What have I done to deserve this? I have always tried to be the perfect daughter, grand-daughter, friend, student, and partner. Why am I being punished? I am slowly losing all faith in everything? I am so in love deeply in love. But, I am so afraid to admit it to loudly. Who's to say that will not be taken away from me? I don't think I can handle losing him.

Chronic illness is what I hear over and over from everyone. On the outside I look like a normal pregnant 22 yr old girl on the inside, I basically have the body of an old lady and my bones are brittle. No one gets it. I'm anemic, my liver and spleen are enlarged, and I have bone marrow involvement. Everyone looks at me as this girl that has everything. Guess what!!! I FUCKING DON'T!!! Money can't cure me! THERE IS NO CURE!!! No one realizes how much this sucks. I hear you'll be fine, you're ok, I'm so sorry. DON'T BE SORRY!!!! DON'T PITY ME!!!! I want to be able to rant and scream and yell and fight. I want someone to listen. TO tell me how much this sucks, to be angry with me. I want my friends to ask me how I am. To cry with me. To just be!!!

What I want most is to be me again. The me I was in December. I was so different then. I had such a love for life. Oh if you had known me then. Some had a brief glimpse of that me. The me before I was raped, before my pregnancy. I love my daughter don't get me wrong. I love her and will fight for her. I will give my own life for her. She is my daughter. It just is hard somedays. She will grow up and I am sure want to know about her dad. I sit and think when I give birth, her birth record will read Father: UNKNOWN. What kind of cruel joke is that. How will I tell her about her conception. My choice to love her and give her life. What kind of mum will I be? Can I be enough? Give her enough so that she will not miss that father she doesn't have? I pray to G-d to give me the strength to make be the best mum I can be.

Christ I just ramble at times don't I but I needed to get this out I needed to just vent and rant it helps me keep it together.

The story

Right now this song hit me hard

Thursday, May 17, 2012

Ups and Downs twists and turns

It's been awhile since I last posted. Things have been a bit crazy. I am in a clinic for my eating disorder getting well or so I thought. The other day I was taken over by excruciating pain. I got a high fever and became the only way I can describe it completely out of it. I was rushed to the main hospital. Once there the blood work the tests all began. They take caution with me because I have had cardiac issues related to my eating disorder and also because I am 20 weeks pregnant so it's not just me they have to worry about. The doctor's noticed my liver and spleen were enlarged, it sent up a red flag, because I was in a Jewish medical center , they looked at my genetic testing and my amnio study. The Doctors in PA tested me for the fatal Jewish genetic disorders which BTW I woulda already been dead if I had them, but none of the other ones. Tests were ran and the diagnosis came in. The told me I had Gaucher's Disease. Now to many of you I am sure you have never heard of Gaucher's disease. So here it is in a nutshell.

Gaucher's (go-SHAYZ) disease occurs when certain harmful fatty substances accumulate to excessive levels in your liver, spleen, lungs, bone marrow and, less commonly, brain. This accumulation of fatty material in tissues interferes with how your body works and may cause organ enlargement and bone pain.

Gaucher's disease is caused by a deficiency of the enzyme glucocerebrosidase, which helps the body process the fatty substance glucocerebroside. The disease is sometimes called glucocerebrosidase deficiency.

Gaucher's disease can occur at any age. It's most common in Jewish people of Eastern and Central European descent (Ashkenazi).

Treatment for Gaucher's disease may involve enzyme replacement and other therapies.

The major types of Gaucher's disease and associated symptoms are:

Type 1
This form of the disease is the most common and generally the mildest. Type 1 accounts for about 90 percent of cases. In this form of the disease, there's usually no damage to the brain. This type can occur at any age, although it's most common in adults, with an average age of 30 at the time of diagnosis. Possible signs and symptoms of type 1 Gaucher's disease include:
Skeletal abnormalities, including thinning of your bones (osteopenia), bone pain and bone fractures
Enlarged liver (hepatomegaly) or spleen (splenomegaly), or both
A decrease in healthy red blood cells (anemia)
Excessive fatigue
A greater susceptibility to bruising, which may mean you have a low number of blood platelets (thrombocytopenia)
Yellow spots in your eyes (pingueculae)
Delayed puberty
Nosebleeds

he cause of Gaucher's disease is a deficit of the enzyme glucocerebrosidase. This enzyme normally breaks down fatty substances (lipids) called glucocerebrosides. When the enzyme is scarce, however, the fatty substances can build up in your brain and other organs, and within your bone marrow.

Gaucher's disease is passed along in an inheritance pattern called autosomal recessive. Both parents must be carriers of a Gaucher's genetic mutation for their child to develop the condition. So far, researchers have noted more than 300 genetic mutations associated with Gaucher's disease. Even when both parents are carriers, there's still only a 25 percent chance that their child will develop the disease, compared with a 50 percent chance of their child being an unaffected carrier, and a 25 percent chance of his or her not being a carrier and not having the disease.

All types of Gaucher's disease tend to be progressive. Possible complications depend on the type of Gaucher's disease.

Complications of all types
Possible complications of all types of Gaucher's disease include:
Bone pain, which can become severe and may be associated with fractures.
A tendency to bleed, which may result in repeated hemorrhaging in the nostrils or nasal cavities, or bruising in the skin (ecchymosis).
An increased risk of certain cancers. Older people with Gaucher's disease may have an increased likelihood of developing certain types of cancer, particularly multiple myeloma — uncontrolled multiplication of plasma cells.

To treat type 1 or 3 Gaucher's disease, your doctor may recommend:
Enzyme replacement therapy. This approach replaces the deficient enzyme with artificial enzymes. These replacement enzymes are administered in an outpatient procedure through a vein (intravenously), typically in high doses at two-week intervals. Although results can vary, treatment is frequently effective in people with type 1 Gaucher's disease and, in some cases, type 3. In many people, enzyme replacement therapy can reduce the enlargement of the liver and spleen, help to resolve blood abnormalities and improve bone density. It's unclear whether this therapy is effective for the neurological problems of Gaucher's disease. Occasionally people experience an allergic or hypersensitivity reaction to enzyme treatment.
Bone marrow transplantation. This surgical procedure has been used for severe cases of Gaucher's disease. In this technique, blood-forming cells that have been damaged by Gaucher's are removed and replaced, which can reverse many of Gaucher's signs and symptoms. Because this is a high-risk approach, it's performed less often than is enzyme replacement therapy.
Medication. The oral medication miglustat (Zavesca) has been approved for use in people with Gaucher's disease. It appears to interfere with the production of glucocerebrosides in some people with type 1 disease. Diarrhea and weight loss are common side effects. This medication may also affect sperm production. Contraception is advised while using miglustat and for three months after stopping the drug.

Pregnancy
Although pregnancy may worsen the symptoms of Gaucher's disease, most women who have the disease can have a successful pregnancy. However, it's not clear if enzyme replacement should be continued during pregnancy.

Prognosis
People with mild cases of Gaucher's disease, particularly those who develop it in adulthood, have close to normal life expectancies. Children whose illness begins during infancy generally don't live beyond 2 years old. However, children with type 3 who live into their teens often survive for many more years.

They say when it rains it pours well I am ready for the rain to stop and the sun to start shining, I don't have very many people to count on in life and my list of friends continues to get shorter and shorter. I am not even sure who will be with me to fight this battle but I can't give up my daughter is counting on me. I am not even sure if my blog helps anyone but me, but I keep writing. It at least helps me put my thoughts down and maybe even get some kind of realization. If anyone is reading this please keep hope at this point in life it is always have to face the uncertainty of our future.