Sunday, March 29, 2009

I have no Title

Salaam all:

It has been a few days since I wrote but that's only because I am so bored I do not know what to write. My days are pretty boring. Wake up at 8:30, the hubby makes me eggs and coffee. I eat, take my medicine, watch tv, surf the net, walk around the house and get back into bed. Around 12noon, I go upstairs, take a shower - scrub (yes Hamid...scrub) the wounds, put cream on it and get changed into clean clothes. I come back downstairs, have some Green chia -- by this time moore or Hamid have arrived and we chat on who called, any family updates, bla, bla, bla.... so you can see how great my life is. I had a scare last night, I had some chest pains but didn't think much of it. My sisters bullied me to go the hospital telling me that I should take something seriously. When the tech told me that it might be a blood clot, N started to cry.....which scared me. N is an ER nurse and if she is crying over a possible blood cloth, why wasn't I take it seriously. So I decided at the moment I should take everything a little serous....I cannot be that lucky! After four hours in the ER, many blood work, CT scans the doctor came in and told me that it is not a blood clot but part of my surgery....THANK GOD. The SMS messages went out to all the family members..."false alarm". When I got home, Iqbal ordered me to bed and told me I am not allowed to get up, I had never seen him so mad. Rarely does he pull the husband card but he pulled it last night.

I do have a few things to report. One I noticed that my blog and my posts on Young Cancer survivor has given people courage to ask for help and ask me questions. I really want to change the Afghan mentality on how Cancer is viewed. This is a curable (in some cases), we should talk about it, we should ask for help, we should have a support system for us.....this should not be a death sentence! Dam it I am living proof that I can live life, kick my cancer in the ass and still have a great attitude toward life. I just found out that a family friend was rushed back from Afghanistan because she has Leukemia. In Afghanistan they told her she just had a bad cold, but when they brought her to the US, they said she Leukemia and was taken the hospital :(. Please, please pray for her. She is a newly wed who was educated in the US but decided to live in Afghanistan with her new Husband. She is only 21 years old. Secondly, I decided and convinced my parents that I do not want a Lavish 'get well" party at a hall. A few reason for my decision, the amount of messages from this blog made me realize how many misfortune people are living in Afghanistan and could benefit from the money I would spent on overfed, overdressed Afghans living here in the US. Secondly, I am afraid of "nazar" from the people who come to the party.

As soon as I am able, Iqbal and I are going to Haj and then I would like to visit Afghanistan and see if I can help cancer patients there......I feel a higher calling. I need help in opening a non-profit agency to help me....WE NEED TO EDUCATE, Screen and fund our people! the family members who left me get well messages "thank you, I will call you as soon as I get a chance" Love you and thank you for thinking of me!

Thursday, March 26, 2009

Going Crazy at home -- I feel like a caged bird

Today is 1 week after my reconstructive surgery. I feel much better, still sharp pains here and there but nothing like that first time in the hospital when they try to get me to sit on a chair......OMG. I am soo bored sitting at home and nothing to do....what do women do all day at home? I cannot go anywhere...between naps, pain medicine I am bored out of my mind!

I came home with four drains. The two drains on top is not draining as much and the Dr may take them out tomorrow. I have a gutt feeling the one on the bottom may stay for another week or so. They hurt when it gets pulled. The best part of the day is when I walk upstairs and take a shower. My grandmother is freaking out because in our culture they don't wet the wounds where the American Doctors wants you to take a shower everyday. So far so good, my first doctor visit is tomorrow to make sure everything is healing the way it should.

On the home front, my mom and sister come every morning to stay with me, they cook for me, clean and just entertain me (off course take my medicine, take my walk around the house, eat, drink). At night Iqbal slept downstairs with me the first night. The second night, Sami slept with me the second night and at 2am he woke up to make sure I was okay. Last night was Nina's turn. At 3am she stood by my bed and said "mommy, mommy can you get up and turn on the light so I can go to the bathroom". My little nurse was too scared to go to the bathroom in the dark....of course dad heard and he ran downstairs to make sure his girls were okay.

Tuesday, March 24, 2009

First night at home

What a great feeling to be in your own home. What a great feeling to have such great family around you. I came home yesterday and it felt to come home. It hurt to get up and walk but it is getting better. Before my surgery, I had no clue how painful this was going to be. I had seen enough before and after pictures on Cancer website so the scars and bruising I had expected, the pain I did not. I am also a baby when it comes to pain. At one point I refused the Hyperion shot (to prevent blood clots) but my SDubs heard me refuse and she told N who rushed in and ordered the nurse not to listen to me. I had to bear the pain of that needle every 8 hours.

So for those of you who are reading this to get a glimpse of why I did this. A year ago when I got diagnosed I attempted immediate reconstructive after my double mastectomy but they got infected and the Plastic surgeon had to remove them and told me to get my 15 month of treatment done and come back to rebuild my body. So off I went to get 15 months of all the treatment with half a body. I did not feel like a women (I am a very girly girl) and my self image started to get me depressed. So now after this surgery I feel complete again. It amazes me how great doctors are. It is amazing how they can rebuild the body! There a few professions that I has my full respect (Doctors, Cooks (yes I know not very interested but it amazes me), engineers, architect, Scientist). All of these professions builds from nothing!

My nurses just arrived (Moore and and H), my Afghan doctor. You know you are Afghan when every member of your family is a doctor. Everything gets healed with Spinach (Spasi), shorwa and food! But I do love the Green Chi.

Monday, March 23, 2009

Day four and I manage to walk to the hospital computer room. I made it through this final surgery! Thank you all for your prayers (I personally feel prayer is 50% of the healing and skilled doctors is the other 50%). The first day was brutal, Iqbal showed up with the kids and I was so much in pain that I kicked them out. The next day the drugs kicked in and I was able to enjoy their visits.

Okay, the nurse is telling me to go take a shower and I can go out of here I go!

Wednesday, March 18, 2009

To my Sisters / Family / Parents

On my last night before surgery, I will not write Thank you / Good bye letters like I did before but rather express it here!

Moore / Agha Jan - thank you for bringing me up the person that I am. I hope my children has the discipline and heart that you have given me. They say kids learn by example (well for starters, I am not a good cook, so we know that's not true, I cannot build anything - so Agha Jan I didn't pick that up and I cannot sew) but I do have a big heart which I learned from you both . No matter how hard our life was, you never made it see or feel it. No matter how big we became, you never let us forget where we came from. NO matter how much we had, you reminded us that we need to give back. No matter how much culture pressured you to marry off your daughters, you told us to focus on thank you for making me who I am. I know that I might have rebeled a little (yes, I said a little *wink*) but you where always there. I truly love you and pray that my kids feel about me the way I feel about you two.

To My Sisters - I cannot write to each one of you because you will sit there and read it to each other anyway! Each one of you are so different but so alike. We need a Shna dana because we truly love each other, hate each other and cannot live without each other. H - I wish you live life a little more like me and be selfish (you come first before anyone but I know you won't listen to me), N - I wish you all the happiness you are searching for. S - I now how the dreams you have and I have no doubt they will come true and my little M - life is not easy for you with so many mothers to tell you what to do but I know you can handle it. It is okay to break down once a while. If you are too tough, you might end up like me and I cannot bear to see you go through the hardship I went through! To Sdub - you were an angle who was sent to me -- I cannot express how grateful I am to you. You sent a care package for every treatment, you sent my kids gifts every week, you listened to me bitch and complain -- at the end of every conversation you made me smile. Our relationship is proof to the world that two people from different religion can be closer then family! To Z khala - you are my rock, I take my strenght from you. In the last year you have stood your ground and I am proud of you! I know it is hard.

To My kids (including all the nieces and nephew) - should you stumble on this blog many years later. You have no clue how much I love you! Everything I do is to make sure you guys can hold your head up high years later! Remember I had given one of you the moon and the other one the shiny star in the sky! I rode you all hard but it was only my way of preparing you for the hard world out there....I will be there to catch everyone of you (including my big bear N).

To my husband - who will probably only read this if I do not wake up from my surgery . I know you don't like PDA so I will not express it here to respect your wishes. There will be hand written note for you!

So now, I ask each and everyone of you to pray for me as I am going in for this surgery! I figured a way to blog on my blackerry. As soon as H gives me my Blackberry, I will let you know how I am doing. Should I not wake up, I hope my courage, zest for life gives the courage for everyone to live every day as a gift given by Allah! Enjoy your family, your friends and yourself -- make sure you can look yourself in the eye for all your actions. Don't sleep through life!

Tuesday, March 17, 2009

My favorite time of the day, early morning when the kids leave for school and Iqbal sleeps in. It is the time of day that I get caught up in the news, drink my coffee and just sit and relax.

I want to dedicate this page to amount of support I have received from everyone. When I started this blog it was to update friends and family on my health. I also wanted to provide a window to Muslim Women around the world that life goes on with Cancer. With any hardship in life, we turn to family and freinds to get us through. So when I got diagnosed, I wanted to reach out to other women who had gone through the same thing I did. The first person I reached out to was a co-worker who I was friendly with but never really close. I aslo looked up Muslim / Afghan women who had gone through this but found nothing. So I joined the Young Breast support group on-line and read the blogs and comments from the privacy of my home. In the past year, the Young survivor has become my source of information and my co-workers has become a 5th sister. They say people come to your life for a reason that only God has planned for!

So again, thank you for your prayers and support! It means a lot to me.

On the home front, last night I had an "Aha" moment with my son. I cooked his favorite food (Dal) and he got upset and said he doesn't like it. He said I am not a good Afghan cook (so many critics). For the last week this kid has been acting up. He has been screaming and crying over everything. I swear there must have been a full moon somewhere for him to be acting like this. It finally hit me that he is upset over my surgery because last night he asked how long I will be in the hospital. We know kids cannot talk out their emotions so they act up. Later at night I talked to him and told him he hurt my feelings because I was thinking about him at 3pm and cooked his favorite food. He said he liked it but would rather have been asked what he wants (so I named all his favorite foods and told him I knew him better then he knew himself). He laughed and said I was right - we called it a nite. Today is Nina's day but off course the controlling girl that she is, she left me a note that she wants Hot Dogs with pudding for dinner on her nite.

As for my big day -- I am starting to get nervous and excited about Thursday. I spoke to my girlfriend about her surgery and she told me the first week home will be tough. I went to the medical supply store and put the hospital bed on hold. If my insurance will not pay for it, I can rent it for $150 a month. For the first three weeks they are telling me I will have trouble getting up from a flat bed. I need to go grocery shopping today to stock up the fridge, pack my hospital bag and vacuum this living room that never gets clean.

Sunday, March 15, 2009

I cannot sleep!

The past few nights I am not able to sleep. Last night, I kept waking my poor husband and asking him if he was awake. The good husband that he is, would say "yes I am awake" between snores. He told me to close my eyes and try to sleep -- as if he was talking to our 6 year old. When I sleep, I have these terrible dreams, so I just stay up and watch tv. Thank god for HBO and Showtime!

How did I get blessed to have someone like him by my side? The last few days with everything going on at work - he has stopped his world to make me happy. For him to call and ask me if I want to go out to dinner is a major indication that he is worried about me.

Today I shared with him my decision for us after surgery. He did the most amazing thing. He took my by the hand to next room (away from the kids) and sat me down. He said, I am your husband. It is my responsibility to feed you, shelter you and make you happy. He said, as long as I can work physically and mentally, I am going to take care of you and the kids. You don't ever have to worry about it. The only thing he asks for return is the silly, loud and "Carey" girl he loves back. (side note, our favorite tv show was King of Queens, he always thought my attitude was like Carey on the show. A girl who goes through life with the middle finger to anyone who does not like her way of life). I never doubted that he couldn't take care of me. I just never allowed him -- call it giving up control. Something I don't do very often.

On the home front. Laundry got done. During dinner, the kids were fighting over who gets the "cool" cup. I got so mad that I threw the cup out the back door. Off course, Nina cried and tried get her Baba to go get it. Sami got upset and said he is going to throw my blackberry out the door. Iqbal just laughed and said, kids -- mom is back.

Hamid and I Went to Bed / Bath and Beyond and looked at the Wedge pillow. It was not what I wanted. I am going to see if the medical store will rent me the hospital bed tomorrow. I reached out to a friend who had the same surgery a few months ago. She was on her way to a Sixer game and said she will call me tomorrow. I need to pick her brain on what helped her get through this.

I wish everyone the relationship I have with my husband. It took us 10 years to get to this stage. For those of you in an arranged marriage (today's culture) -- it does work! You have to be able to let go and give to get back!

Saturday, March 14, 2009

My last weekend before the big surgery. I have so much to do but I cannot be motivated to do anything. On top if it is my Birthday! I know I should be thrilled that I made to my 36th birthday because last year this time I felt doomed. My house was full of flowers as if it is was my funeral. I had my mastectomy two weeks before my birthday. So to make it today is a major mile stone but how ironic that I am preparing for another surgery 1 year later. AT least I do not feel like the world is over this year! Friday was my last day at work to prepare for the surgery. I am going to be out of work 8 - 12 weeks.

So a few good things happened this week

1. My six months tests showed up clean - so monitoring them for 1 full years, every 6 months show no new growth. No Cancer and my Heart function is getting stronger. The Chemo treatment I am on, weakens the heart. I was worried about it 3 months ago as the test keep showing the pumping of my heart kept going down. This last test showed that it actually went up by 3 points! The medical terms I learned this year is enough to put me through medical school!

2. I also release that I really need to re look at my career / family balance. I was so focused on my career that before Cancer that I aimed for the sky. When I got Diagnosed, I focused on me and my family and put my career on the back burner. Now that I might see a light at the end of this dark tunnel, I need to relook at where I need to be. I am not the stay at home type but I feel I need to make a difference in this terrible world!

3. The hospital called to tell me that my insurance is going to pick up most of the cost for the surgery. I am going to be responsible for 10% of the cost. Our lovely health system -- we have no clue what the cost the hospital / doctors will settle with the insurance company and that that means to me (except 10% of whatever they settle at). I do have to be grateful that unlike some countries, I will not be allowed to have this surgery unless I pay upfront before the surgery.

A few things on my to do list before I go under are: Get the house cleaned, stock up on ready to eat food, do domestic duties (clean kids clothes)! I still fear that I might not wake up, so I need to write some good bye notes for my family and kids. I must turn in Nina's add a Pearl necklace to the Jewelers. When she was born, I stated a Pearl Necklace -- for her every birthday, I add the numbers of Pearls to represent her age. I had planned to give it to her on her wedding day. I want to make sure that I turn that in as her Birthday is April 1s and I will not be able to drive for up to 4 weeks. For those of you who knows me -- that is going to kill me! I cannot stay home and watch TV all day!

Tuesday, March 10, 2009

WOW, what a day today was at work. I cannot go into details about this but God is truly testing me in every way he knows how. You know that old saying about God only gives you what you can take and what does not break you will only make you stronger -- well that is bullshit! I was and am strong to begin with -- if I get any stronger I might be too full of myself. I guess what he is trying to teach me is patience, something I know I don't have.

Okay, the surgery is next Thursday and I am still scared but I know I will get through this as well. The Dr told me I will be in the hospital for 4 days and then not able to drive for up to three weeks with drains. I hate drains (these little juice like bombs that hang from you to collect all unwanted fluid from your wounds). Iqbal tries to help me drain them but I know he cannot stand the sight of blood. Moore (mom) and Hamid are very good at this. What would I do without them?

This weekend, I will have to buy this Wedge pillow everyone is talking about to make sure I can prop myself up when I get home from the hospital. I need to make sure there are plenty of snacks and easy to eat meals for the kids -- for those of you who has not had my son at their house, you should know for an 8 1/2 year old he is an eater. I cannot keep enough "American" food in the house for him. Hanna (nina) can live on bread if I let her. What a huge difference a boys and girls make.

Saturday, March 7, 2009

Light at the end of the Road

What a year 2008 was for me! I have always thought I was lucky and had an angel watching over me. I was thankful for what I had -- Great husband, a job I like, healthy kids...bla,bla,bla. Boy did my life get tested with a small lump! For once in my life I felt I didn't know where I was or where I was going. My future was no longer safe.

Some how I made it through the chemo treatment, the loss of my hair, the extra wight that comes with chemo (like I need an excuse for all the gain weight). When you are five feet tall, gaining 1lb is enough to make you look like a gaining an extra 20 lbs on top of the "desk job" weight is enough to wear a mu-mu for the rest of your life.

People tell me I am strong for making through this -- I am not strong. I had no choice. I had two little kids I needed to worry about. I am not done with leaving my mark on the world! I still want to know why me?

Where I am today, I have two more Hercepton treatment to go and scheduled for a DIEP surgery with Dr. Serletti in two weeks. I am very scared -- but then again I get scared anytime I have to go under. I am also scared of the pain and depending on people after the surgery.

You ask what is a DIEP (Deep Inferior Epigastric Perforator (artery). A type of surgery that takes my lower abdomen skin and fat (I do have a lot of this) and created my new Foobs. The main reason I decided on this was I did not want the DR to removes my stomach muscle. I know too much details. If you only knew the amount of pictures and website I visited to make sure I was doing the right thing.