It's been 8 days since my last round of chemo. I am well, but tired. I was lucky to enjoy Thanksgiving. Thanksgiving has a whole new meaning. It really is Thanksgiving to me everyday. My bro-in-law opened up a bottle of bubbly at TG dinner and my sister gave a toast. Of course I got teary eyed. It's all still so surreal to me. That I had cancer. That I went through 6 months of chemo. I have been "normal" the past 6 months. Working, living, having fun. But I have been in a fog the past month. Every second was being counted down to that final day of chemo. That was all that occupied my mind. A lot people have asked "ok, so now you are normal right". Well it's doesn't happen. Just. Like. That. Some would say I was never normal (Minos!). But it will take 4-6 weeks for my counts (neutrophils, white blood cells) to bounce back from 0.1 to 8.0 to 11.0 range. I have become anemic because of chemo. My hair should be slowly growing back. I was lucky not to lose all of the hair on my head. It just turned into baby hair. I am actually looking forward to all the fun hairstyles I will rock. And all the tiny victories that lie ahead (thanks Ali). Cancer is not a marathon. It's an ultramarathon. I have many milestones ahead of me.
Before chemo, I made a mixed CD for my medical team at Northwestern. And I titled it Chemolicious. It was a soundtrack of my Chemo and Cancer journey. I love music. It really just makes my day complete. And I love dancing. Dancing in my car, the shower, in my bedroom, at the bars, in my head. Everywhere. And of course I danced at my last chemo. I captured video of the last Adrimyacin, the last Bleomyacin, Vinblastine and Dacarbazine. And I captured the moment the IV machine beeped and when I was officially done. I had so much adrenaline running through me. I was so excited. So happy. I didn't shed any tears. After I was done I walked out to the lobby and I had so much excitement built up in my spirit.But when I went into the lobby, and saw everyone, I felt like I was seeing people with a different set of eyes. I saw all these “sick” people.They seemed to look “sicker” than before.Was it because I have walked out with my blinders on all the time and was just going through the routine? I'm not sure but all I know is that I felt sad.I felt upset to see so many people in the waiting room, waiting for results, infusion, fluids, etc. I was reminded how much I hate cancer and what it does to people and their families.I felt it was unfair to celebrate.My voice and spirit stayed silent. The adrenaline wore off as the side effects kicked in. But I felt so different. Because I knew I was done with chemo. I think things will start sinking in next week. When I don't have to go in for chemo. Maybe I will be more emotional next week. Who knows. I see Dr. Gordon on December 21. The next 2 years will be appointments with him, blood work and CT scans. I hope each visit will bring positive news. I know it will.
It’s been a long and grueling 6 months. Just in case you didn’t know, my scheduled final round of chemo was postponed because of a fever I had a few weeks back which delayed round 11 therefore delaying my final treatment. I was pretty devastated when I was told chemo would be postponed. I have had November 16 stamped in my brain. I was crushed. I didn’t want to have treatment the week of Thanksgiving. I was looking forward to feeling good and savoring every single bite at Thanksgiving dinner. But now I am scheduled for chemo November 21st. Three days before Turkey day. Yes, I am thankful that I will be done. I just hope that my taste buds aren’t too whacked out for dinner.
I have found this part of the journey to be rather difficult. This part meaning the preparation for the final round. Mentally. I anticipate the world of survivorship. Yes I am surviving every day but there is a whole new meaning to this stage of survivorship. Chemo will no longer be in my routine. And my body, my mind and my spirit will be mending. I am aware of what survivorship means to me but I don’t know what it will bring me. Ever since I heard the words ”You have cancer”, I had to let go of “what if’s” and “what’s next” because I had to learn quickly to take each day at time and focus on surviving each day. And not waste energy on trying to rationalize everything and why things were happening or not happening for that matter. I want you to know that I am nervous for what lies ahead, no doubt. Maybe even scared. But I know now that I extremely aware of my feelings, my emotions, my fears, the things that bring me joy and happiness more now than ever. I am aware that I will cry for no reason any given time. I am aware that I will smile while thinking of something or someone that made me happy. There is no guide on how to survive survivorship. But with the continued support from friends and family I am sure I will get through this. Because of all of you, you gave me strength, you picked me up when I was weak, you made me laugh, you let me cry, you let me be irritable, annoyed and frustrated, you made me live harder everyday and you let me be me. The next two years will be filled with follow up appointments, CT scans, blood tests, cardiology appointments. I will have happiness, laughter, love, fears, sadness, frustrations. I will have hair growth, blood running through my vessels without cancer, new and much more white blood cells, new and many more neutrophils, scars, and a spirit that is so alive. I have been through so much the past 6 months. Six months may not seem long but it feels like eternity for me. In 6 months, you may be getting married, graduating from school, going on a trip, starting a new job, or having a baby. Let each day of the next 6 months ground you, humble you. Be alive every day going forward. Because that‘s what I learned to do these past 6 months.
You are a special thing to me. The first time I met you scared me. You brought tears to my eyes and fear in my spirit. But then I got to know you on a deeper level. Past that superficial shit. I saw that you really do have a good heart and you mean well. I realized you were my sweet poison throughout this relationship. You took my cancer away. And I am forever grateful that I am cancer free today because of you. BUT, we had to make sure cancer didn’t come back so I had to see you more. I kept saying I can move on without you but I still needed you. You gave me all sorts of issues. You wore me out. You gave me fevers, chills, muscle aches, nausea, metallic taste and hiccups! You backed my shit up, if you get what I’m saying. I get to see you tomorrow. You get to put me on this wicked trip for a few days. But I will be ready for that last trip on November 16th. It will be the final time you get into my blood and circulate your sweet poison through every vessel. And on that day, I bid you goodbye. I really don’t want to see you anymore after that. I’m sorry but it must be that way. It’s you, not me.
All My Love,
Noreen
Ok. So I know it’s premature. But I can’t wait to be done!!!!! And at least I didn't do it over texting. I’m so over this. I came across an interesting article about cancer and real people relationships. Getting dumped after a diagnosis has got to be rough! Now I didn't get dumped but a certain fellow I was interested in disappeared after I told him about my diagnosis. I'm glad he did!
I am also nervous and anxious for the aftermath. Survivorship. Recovery. Also thoughts of mourning this journey. It's been so constant the past 6 months. I find myself thinking a lot about my father. Remembering the days, weeks, and months after his death. I was circling back to how I felt. And I know it's crazy, but it's sort of the same feelings. We all knew my father's time on this earth was short but I still didn't know the day he was going to leave us. And I know I have 2 more weeks of treatment but I do anticipate similar emotions. I try to stop my mind from wandering that way but I can't help it. Everyday, I have been dreaming about the last day of chemo. Again, I'm thinking way ahead. Even though it's two weeks ahead and I'm not focusing on one day at a time but I'm anxious. It’s another milestone in this journey. Another reminder that I need to put all these life lessons I’ve learned into play. I’ve been asked several times “Now that you have gone through this, what will you do different?” I don’t quite exactly have the answer to that. I have an idea of how I want to live my life, how I want to be good to my body, to stop being wishy washy about things and take that step into doing what I’m passionate about. I'm anxious to learning a new me, a new body that will recover and change everyday. I tried meditation for the first time. I’m not exactly into it just yet but I am willing to try a few more times. I will try things. I will open my mind more and more. As I was creeping on facebook I saw a friend post a picture of this saying. So I leave you with these words. A reminder. A reminder that I will probably read every week. (And I leave you with a song of course, my f-u cancer song.)
"This is your life. Do what you love, and do it often. If you don’t like something, change it. If you don’t like your job, quit. If you don’t have enough time, stop watching TV. If you are looking for the love of your life, stop; they will be waiting for you when you start doing the things you love. Stop overanalyzing, life is simple. All emotions are beautiful. When you eat, appreciate every last bite. Open your mind, arms, and heart to new things and people, we are united in our differences. Ask the next person you see what their passion is, and share your inspiring dream with them. Travel often; getting lost will help you find yourself. Some opportunities only come once, seize them. Life is about the people you meet and the things you create with them so go out and start creating. Live your dream and share your passion. Life is short."
Ten down, two more to go. What have I learned the past few weeks? Well, quite a bit. I have seen so many commercials about cancer and cancer awareness. I have seen sitcoms joking about cancer. When you hear the word cancer, what's the first thing you think of? "Damn, you are going to die" or "Damn, that sucks, now lets beat it!" Yes, cancer kills. Yes, it is a bitch. And yes I am lucky that I got the best cancer to have because of the outcomes and promising success rate. But I cant help the fact that I get mad about some of these negative connotations associated with cancer. It's not always like what you see on TV or hear about so and so. Cancer doesn't discriminate. It can happen to any of us. We can choose to fight and be positive or we can choose to let it take over our lives. We can listen to our bodies and make sure our doctors are listening to what we are saying. Every cancer is different, every person is different, and every person responds to their treatment differently. And that does affect the mind and spirit. No doubt, I have had my ups and downs. But the one thing that has kept me strong and going is that I surround myself with positive and supportive people. I am a member of this new cancer world, my family and friends are part of this cancer world as caregivers and supporters. I have coworkers, friends, family that are currently fighting, waiting for that one day to hear "You are cancer free". One of my coworkers had a scare last week. Her doctors thought they saw cancer activity on her liver. She is a breast cancer survivor. All week, her world was turned upside down. And then she hears "it's not cancer". My friend's nodule in his lung grew 1mm. 1 freaking mm! Now they are discussing how much chemo he should get. This is the third time down that road for him. Another coworker, had a "weird biopsy". And is still going through this wait and see game. And finally, a friend has her BIG SCAN tomorrow. I am praying for good news because I really hate cancer.
Earlier this month, we lost Steve Jobs. Earlier this week we learned Guiliana Rancic has early stages of breast cancer. She got an early mammogram because her fertility doctor asked her to. She was kicking and screaming because she felt she didn't need it. So I flash back. About 2 years ago I was at an Imerman Angels benefit. I vividly remembering a survivor speak out and saying she had Hodgkin's Lymphoma. Not knowing what kind of cancer that was I researched it later that week. And a year ago I was going about doing my thing, not knowing cancer had invaded my body. I traveled, went to New York and Vegas living life. I was telling my coworker "Suck it Cancer" as she ran past me in the Chicago Marathon last year. And I had cancer! It's crazy to me. But then things started to change with my body and I noticed. And I kept telling my doctor my symptoms. I was reminded that I had said jokingly that I had cancer when I started to notice all the red bumps on my shin. Did I think that was really going to happen?! Absolutely not. Like I said this disease does not discriminate. It can happen to any of us anytime. And that's why it's so important to get physicals and see your doctor on a regular basis. I am lucky that I am in the healthcare profession and act as an advocate for many athletes so I know what to look for, but one thing people in my profession forget to do is take care of their own aches and pains. And if I had never said to my doctor can you check for Rheumatoid Arthritis, I don't know how long it would have been till I found out that I had cancer. By me saying, "Listen, my body doesn't feel right, can you just check for RA", we found elevated numbers in my blood which then I was referred to a specialist who had found my cancer. It scares me sometimes. What if I wasn't as persistent, where would I be now? But I was persistent. And it's 5 months later and I am almost done! My round about point to this post is that Cancer is scary. But it doesn't have to be. Because we need to educate, be proactive, see your doctor on a regular basis, donate to cancer research and start associating cancer with a positive. Cancer has taught me several things and yes it has taken parts of my life that I once had. But now I look forward to starting a new life with of all these lessons I have learned. And I can't wait to live the life I WANT with the ENERGY that I once had and all the KNOWLEDGE that I have now gained.
Here are some videos of chemo day...See it's not that scary!
I have had this post brewing in my head for the past week and I am now just getting to it. I will make an attempt here to review the flick 50/50, you know, the one with Seth Rogen and Joseph Gordon-Levitt. I will try not to spoil anything for those who have not seen this movie. But if you haven’t seen it yet, you better see it this weekend!
This movie is based on a true story. As a young adult that has entered the cancer world, unwanted, I connected to this movie on so many different levels. Before the movie even started I was in the theater with cancer survivors, fighters and supporters. I was lucky to get a free advance screening ticket and was accompanied by my friend Deb. Johnny Imerman spoke briefly as well as others from LLS. The energy was amazing.
The moment Joseph’s character gets diagnosed everything around him is muted. The way the doctor spoke of his diagnosis was nothing like that for me. Gratitude point #1: so lucky to have Northwestern as my medical provider. Dr. Gordon, Betsey, Beth, Celia and Dr. Hseih, you are all amazing!
He then walks down the hallways and sees only sick people. Older people. Sadness. I vividly remember walking through the chemo side of the 21st floor and seeing older sick people. I felt there was no life anywhere. I told myself that whenever I would go to chemo, I would smile and bring energy. I always felt I was the youngest one in the waiting area. People looking at me and saying “she’s too young”…at least that was what played in repeat in my head, me thinking that people were saying such things.
As he told friends and family, everyone had different reactions. This is very true. I have learned a lot about others and how they deal with news of this magnitude. I have learned a lot about myself. I have seen the true colors of people. I have been touched by the amount of support and love. I have reflected and closed a few chapters that were lingering in my life. I have said take care to people I know I will no longer talk to and they will no longer be in my life. I have opened new doors and started new chapters. I’m entering a new journey. A rebirth. But if I was on the other side and if my best friend told me she had cancer, I really don’t know how I would react. It’s hard. It’s hard to even think that would happen to her. And I would never want any of my friends to go through what I have gone through.
He “ignores” his mom. Now, I wouldn’t say I ignore my mom but it’s a tricky little thing. He (and I) have been independent for years. He didn’t rely too heavily on his mom. He said he would get annoyed. And yes, I got annoyed. But what it comes down to is that a mom will be a mom. She will love you, worry about you, care for you, support you, take away all the pain and hurt in the world away if she could. And I couldn’t ask for anything more. My mom has been superwomen to me throughout this journey. She makes my heart smile even when my face can’t seem to smile. Gratitude and love to you mom!
He has a breakdown. This part gets me. Because I had a breakdown a few weeks prior to seeing the movie. It’s so hard to explain all the emotions but you do get sick of being sick! Then the day of his surgery…well, his inner child surfaces that we all have inside of us. We need our mommy and daddy. We need their support. He tells his parents he loves them. I did cry hard at this part because I so wanted to see my dad. I miss him. I wanted to tell him that I’m doing good and that mom was taking such good care of me just as she did for him.
I will no longer go into the movie because I want you to see it! And none of my friends have used my cancer to get them some play, if you know what I mean. But I do want you to know I am feeling better mentally. I have stayed busy which is a distraction. But I have been able to do things I enjoy and spend time with friends and family. Just a few medical updates as well. I had my pulmonary function test last week. My lung health is looking good! The Bleomycin (one of the chemo drugs) has not caused damage to my lungs and it’s breathing capacity. I had my CT scan as well of my chest. I know my PET scan was clear so I knew my cancer was gone, but I was still nervous. I didn’t want something crazy popping up. Dr. Gordon called me and I have a clean scan! That’s 2 clean scans within 2 months. I am almost done! Chemo #9 awaits me. Three more to go! I’ll keep on fighting the good fight!
It’s interesting to look back at these past 4 months. It seems like everything is moving in slow motion but really the past 4 months have passed by so quickly. I have done 8 chemo infusions. I have 4 more to go. You really have no clue how bad I want this to be all over. I remember the first 2 rounds of chemo I was still figuring out how I would respond to each treatment. And thinking, shit I have 5 more months of this. I was still figuring how to get in the swing of things. I remember seeing the green in the trees, smelling the summer air and hoping that this journey would go by fast. Now, my head is down and I just go. I have 4 months done and 2 more to go. I’m tired of this. All of this. I don’t even want to see what each day brings. I just keep pressing the fast forward button to 2012. And this is probably the worst thing I can do to myself. I really should focus on each day but I can’t. I should be looking at all the positives in this journey like I did in the beginning but I can’t seem to see it right now. I deserve to feel this way right? I’ve been positive, full of energy and fight. But I think it’s fair to have a shitty attitude… just for a little bit, at least. I hate looking at myself in the mirror. I don’t recognize myself. I want my bangs back. I want my long eyelashes back. I have a love /hate relationship with my wigs and have been opting to wear hats more. I am losing color in my face. I look sick. And I hate chemo and cancer right now.
These past few weeks have brought on so much frustration that I didn’t even know how to process. Instead, I let it boil up inside of me. I acted ways that I wish I could erase, I snapped at people, I was short and very irritable. But I didn’t mean to act that way. I don’t know how to process any of my emotions any more because I am so tired of it. So tired of thinking and trying to cope with it all. I had a break down a few days back. Tears filled my eyes, anxiety filled my chest, and hopelessness filled my head. It was my lowest moment for sure. I have been so “hard” on the outside, smiling, laughing, and living but in reality the last few weeks I have been a complete mess inside. How am I going to get through these next 2 months? How am I going to cope? How am I going to listen to my body? Is this what your everyday person deals with? Is this what every cancer patient goes through at some point? It really blows! But I realized I didn’t have the answers to any of these questions and I have to find some new outlets. Music has always been a medium for me, to connect and feel and express what’s going on inside of me. And that’s all I have been focusing on the past few weeks. Because music puts my emotions and feelings into words. Words that I can’t express right now. So grateful for music.
A few days after my break down, I was reminded of all the love that is out there for me. My sisters and good friends organized an amazing fundraiser on behalf of myself and the Leukemia and Lymphoma Society. Hearing words of “you are truly an inspiration”, “you are a rock star”, “you are amazing” was what I needed to hear. Seeing old friends from grade school and high school is what I needed to see. Reliving some of the old days with my friends was what I needed to feel. My family, their friends and all of their support to me and my family is truly amazing. We are so lucky to have each other in our lives. I have to remind myself it’s ok to feel down. Because at the end of the day, I know I will always have someone to pick me up. So grateful for all of you who lend me your guiding hand. Much love and gratitude. And I hope one day I can pay it back.
It’s been awhile since I shared my thoughts.The past few weeks have been complicated.Filled with distractions that I wish I could write about but can’t. Filled with ups and downs, excitement, let down, confusion, understanding. And today has been filled with reflection.It’s been 10 years since the Twin Towers were attacked.I was 21 and at UIC for our student athletic trainer meeting we had in the morning.I remember Zeev saying, the twin towers were just attacked.Confused, I followed him to see what he was seeing on the computer.I felt scared, worried.My sister!I tried calling right away to see if my sister was safe.I called Rachel who was in DC to see if she was safe.I was scared.I was scared to be an Arab-American.As weeks went by we learned about heroes.We learned about families that lost their loved one is such a tragic way.I would never know how that would feel. But these past years have been filled with lots. From falling in love to broken hearts, from rehabbing injuries and connecting with athletes to becoming the athletic trainer I am now, to losing my father, to becoming a god mother and an aunt, to learning I have cancer and to becoming a cancer survivor.But yet this world continues to be in war.And nothing seems to change.And I ask myself what have I done the past 10 years to be a better person and what have I done to make a difference.Is it normal to feel like I’ve been through so much already?Because sometimes I do.But the reality is that I am lucky to be here today and I really haven’t been through much.Nothing could ever compare to what the families of 9/11 have gone through or are going through till this day. Never will I know that feeling.But all I want to do is be a better a person. To carry on the true meaning of life of being kind to others and living life to the fullest.Because it can easily be taken away. I hope that you will smile to a stranger one day, say thank you to the person holding the elevator door for you, look at your surroundings and see the beautiful and not the ugly, imagine the clouds when driving down Lake Shore Drive are mountains (yes, I do that often), and live life.We are lucky to be here today.
I’ve been asked a lot, “how are you doing?” or “how are you feeling?” To be honest, I feel pretty good.Well, for the most part.Yes, I am drained of all life the day of chemo but I slowly climb back the next few days and bounce back high, just right before I have to plummet to the bottom again.I am going through the motions and I now have a sense, once again, of what this part of the chapter is like and what to expect.But I can never expect the emotions. As I have never expected these emotions that have surfaced throughout the past 10 years.
My heart. The big muscle that is supposed pump blood throughout my whole body. Well, not mine.I am very frustrated and upset about it.And today is monumental for me.It’s my 6th round of chemo.My halfway point.I am receiving messages from friends and family this morning of encouragement and excitement.So grateful for all of you. But back to this little ticker of mine.
I had my follow up echo and cardiologist appointment last week.Last night, I got the final word on the plan for my treatment.Dr. R spoke to Dr. Gordon and they have decided to put me on heart meds for at least year (Coreg) and continue taking the Zinecard along with my chemo treatments.My echo had the same findings as my first echo before treatment started.40-45% ejection fraction which is below normal.Normal is 50-60%.The ejection fraction (EF) is the measurement of how much blood is being pumped with every heart beat.My Left Ventricle is mildly depressed and my cardiologist would say.My Right Ventricle is normal.Since I am receiving chemo this puts my heart at risk.Hence why they give me Zinecard to protect it.Now my EF didn’t drop which is good but it didn’t get better.My doctors were hoping that the disease/cancer in the area around my heart was causing my EF to be low.But since I have no more cancer and the echo still showed the same findings.The doctors are still not sure what is causing my EF to be low.We have done several tests already and nothing has provided an answer.Dr. R thinks a virus may have caused this.That I was sick for so long and didn’t even know and that viruses are known to attack the heart.She said if my EF stays at 45% the rest of my life, I will be just fine. BUT, since I am going through Adrimyacin (one of the chemo drugs) I may lose 20% of my EF at some point in my life. When?It could be right away or 50 years from now.There is no real way to tell when the EF will decrease.But we monitor and try to prevent that decrease is muscle strength. If it drops I am at risk of heart failure. I am seriously frustrated.I have been a healthy eater (most of the time), a non-smoker, not a big drinker, an athlete the majority of my life, a good student, heck I got all A’s in grad school! Why me? What else can go wrong now?Why is it one thing after another?
I don’t want to feel this way but I can’t help it.My friends help me find meaning in this. I am grateful I now know about my heart.If it wasn’t for cancer I would have no clue. I am a tough girl.I beat cancer.And I can get through this.I have to keep my mind strong and positive.I am thankful for medicine.It is healing me and it will protect my heart and my health.I am lucky to be living and to have insurance and to have a wonderful medical team at Northwestern and to have all of my friends and family.I just want this year to end and move on to normalcy.
A little Robyn for you, with every heartbeat! I will go dance right now and feel every heart beat, feel my heart pumping, and feel alive.
It’s been an interesting week. And I have had a rough time. Trying to grasp on to something that makes sense to me. For the first time, I have felt that I needed a break from the cancer world. I needed to forget that I am currently battling and that I am part of this new world as a cancer survivor. I wanted nothing to do with cancer.
I started my journey devastated and crushed. I had no idea what to expect the next 6 months. May was full of shocking news. Learning I had cancer. Learning I had/have a slightly weak heart (physically). I was numb.
June was full of uncertainties. I didn’t know how I would respond to each treatment. I didn’t know I would feel like I had World War III going on in my chest. I didn’t know if I was going to lose my hair so I took control and shaved it off. I didn’t know how to feel yet. I was just going through the motions.
July was a routine. I slowly figured out my symptoms. I was working regularly. Yes. I took at most 2-3 days off of work every 2 weeks. I was full of energy and fight. I twisted out cancer all over Chicago with Jenna.
August. Well, I’m not sure about you August. You are slightly messing with me. I learned I am cancer free. Amazing news of course. I met NED, (No Evidence of Disease), as a dear friend of mine would say. People were more excited to hear about my remission than I think I was saying it. Because I knew this wasn’t over. I have 3 more months to fight. I have 3 more months to shift my focus. But I am not sure how to do that knowing that the cancer is out of my body. I have no association to make with the chemo because there is nothing left to kill. Besides my healthy cells. I found that I was extremely fatigue this last round of chemo. It extended longer than the usual. Why? I should have my energy back because all the cancer is gone. Well, not exactly. Chemo obviously runs people down. It is catching up with me. It’s adding up and dragging me. And I hate it! Of course I start researching and reading about how long the fatigue may last for. I read it can last for several years. I don’t want that. But I won’t know what to expect. I find myself wanting to be mute. Wanting to be in silence. I am trying to figure this all out. I end up going in for fluids for rehydration and ended up having a very good talk with the social worker. I find that I am crying basically the entire meeting with her. She told me everything that I am feeling is completely normal. She really puts things in perspective for me. She explains that when she found out that she was in remission (she had the same cancer as me 10 years ago), she was very angry and had to take a break from the cancer world for 3 years. She asked me to try to define why I was frustrated and angry. What caused those emotions? We talked it out a lot and she helped me vocalize my thoughts and emotions. It was so needed. I expressed that I should be relieved and jumping for joy that I am in remission but that fact that I am not makes me feel like a brat. So many others are currently fighting cancer for years and have yet to meet NED and yet I am lost. This state of in-between is, so far, the hardest thing for me in this journey. I thought all the preliminary tests were hard. Not exactly.
The past week I spent time with some great people. My sister Hilda was in town for 2 weeks. She pretty much made me breakfast everyday and offered up lunch and dinner. But I was moody and never knew what I wanted. Thanks for being patient with me. I know I’m not the easiest to deal with. You are so sweet and caring. Thank you and I love you, you nerd! ;)
I spent some good times with my cousin Rose. Ever since I was little, Rose was always the world to me. She was my superstar. I still feel that way about her! She’s the best! Love you Rose.
I stopped by UIC to have lunch with my former boss who is a survivor as well! He always puts a smile on my face and makes me laugh.
I saw a few of my old soccer guys. I started crying when I saw them. It was the weirdest thing. They were good tears. I was reminded of how much I connected with one of the guys. He and I had connected immediately. When he came in as a freshman, he had knee surgery so we automatically bonded during his rehabilitation. He had experienced some hardships from the loss of his brother, to relationship situations, to just life. I listened to him and was there for him. And this time, when I needed care, he was there. He would always check in with me. He was there for me. You are a special kid to me and right now I am saying “thank you” in our Mali language noise (click, click, click)!
I had dinner with my NovaCare girls. Amazing ladies that I work with. And might I say we have some attractive physical therapists!
I went to Jenna's event the day after my last treatment. The room was so full of love and energy. She is truly an inspiration. She freaking beat Grey Zone Lymphoma. It's a rare cancer. There is really no standard protocol for treatment. But Dr. Gordon saved her life. And Northwestern linked us together. She truly amazes me.
Through all these encounters, I was not sure of my emotions and tried to talk it out with some of my friends and family. But truly had a hard time. I am growing and learning though. I am processing. And that’s all I can do for now.
This Wednesday marks my halfway point. I will have had 6 of the 12 chemo treatments. And I can’t believe it. Everything has just happened so fast. But I still can smell the roses.
Here is Jenna's story and some video of us twisting out cancer all over chicago! My sister, Hilda, made this video. She did an amazing job with the animation. My cousin, Bliz Beats, created the beat playing in the background, "Shake It Off". My family is so gifted!
I'm in remission. But I don't quite believe it. Maybe because I have 7 more rounds of chemo. Why do I have to continue with treatment you ask? Well, Dr. Gordon is following the standard treatment plan. They have stopped people after 8 rounds of chemo but they don't have enough data to support the good outcomes. I wish I could stop now. I hate feeling so worn out after chemo but I love the bounce back of energy the week after. I hate the nausea, the sore throat, and the metallic taste but I love it when I can eat yummy foods when that's all gone. So a total of 12 rounds it is. Then a repeat scan 8 weeks after the final round of chemo, then every 6 months thereafter for the next 2 years. It's not over. Everyone is happy and excited for me and I have yet to figure out my reaction. I'm happy, no doubt. Should I be falling to ground crying tears of joy, should I be doing cartwheels? I haven't figure it out. We will see what the next few weeks bring.
Chemo wasn't bad for Round 5. My sister Hilda, my cousin Rosie and my coworker and dear friend Cooper joined me for round 5. My counts are extremely low (as low as they were when I had a fever, meaning my white blood cells and Neutrophils (all the good fighting cells) are nearly at 1 and 0 respectively. I have been extremely fatigue this past week and my nurse said it's because my counts are so low and chemo can have that effect and worsen as we go on.
I still have my hair. It's thinning but not too noticeable. I still have my eyebrows and eyelashes. And my arm hairs, other than that all my other body hair is gone or slowly growing back. I even lost my nose hairs! I wonder if Iwill lose the rest of my hair as chemo continues. It's going to be weird to say I don't have cancer but I look like a cancer patient (that is if I lose my hair). Ok, I'll stop looking ahead. This brings me back to the first day I was diagnosed. Each day was like I was moving in slow motion. I was fast forwarding to December and not taking each day as it came. I assumed I was going to be bald and bought scarfs and wigs. I buzzed my freaking head. I wanted to take control and not have the cancer control me. But now 3 months later, time has passed by, I still have a head of hair and I am one step closer to being done, I am cancer free, and I appreciate things so much more. It's amazing how your life can dramatically change within 3 months. Do we need something tragic to happen us to realize all the fruits of life? Do we live in a world were it's work, work, work and no time to slow down and smell the roses? I think I did, and I don't want to go back to that. I need to slow down, and do the things I enjoy, and do something I'm passionate about. I will do these things. Because I am not one to settle, or sulk, or feel sorry for myself. Not once did I feel guilty or sorry or ashamed that I have, I mean had, cancer. Don't get me wrong, it sucks but there is so much to be learned from this. And I chose to blog to help me cope and learn. I am learning so much about myself. And yet it's strange that I chose to share my journey so openly. I would consider myself somewhat private. I'm selective about what I share on Facebook in general. But yet I chose to share my story. I wanted to show people what I was going through so they wouldn't be scared or worry for me. I wanted to keep friends and family updated as it was the easiest form of communication. I wanted to share videos of music, because music has been so therapeutic for me. I want someone, who may be diagnosed with Hodgkins today, to come across my blog and connect and learn from it. I want to pay it forward.
I want to make another reference to my "t h r e e " blog that 2 special people pointed out. I am 3 decades (1 y) old. In 2 years, after complete remission, I will be consired Cured! In 2 years I will be 33. Three, you are my new favorite number. My friend reminded me of the jam "three is the magic number" by School House Rock. Did you know I learned the Preamble and can still recite it today because of School House Rock?
Anyway, I also failed to mention a few thoughts I had in the "t h r e e" post. As I was driving to my PET scan, "Another One Bites the Dust" came on the radio. I smiled! I thought to myself, today, another Hodgy is going to bite the dust. And I when I was getting my pet scan, Jenna, my angel told me to imagine that I was in a cocoon being wrapped around with the love of my family and friends. I did imagine that, took a deep breath and smiled. I closed my eyes and hummed "Another One Bites the Dust"!
Thank you all for your love and support. I couldn't have done this without you. Please continue all the positive chi as I finish my journey. I love you all!
My note to you cancer, "Cancer, you stood no chance! You can't have me and you can't handle me!"
The number 3. Exactly three months ago, I received that awful phone call from Dr. Hsieh telling me they found a lymphoma in my chest and I most likely have cancer. I was blindsided. The past 3 months I have cried, laughed, fainted, became feverish, worried, became hopeless, became hopeful, became a fighter, became a survivor. Today, 3 months later from the dreaded phone call, I got my "unofficial" read on my PET scan.
I had my PET scan scheduled on August 8th. I wasn't nervous. More tired than anything. I had an extremely busy week. I took a flight to Connecticut for work and I didn't get sick! I washed my hands literally as often as I could. Or used my hand sanitizer. I had my first glass of wine since May. It is recommended that you don't drink while undergoing chemotherapy, but I have been feeling pretty good that I asked my nurse if I could cheat. She gave me permission to have a glass of wine here and there but closer to my chemo day, not after. I can't have sushi, because of the risk of getting sick. But she gave me permission to have a california roll (no raw fish, just imitation crab, ha). So I did do those things. I went to a favorite Sushi spot called Shine with Amy, Vivian, Rachel and Renee. I savored every sip of the wine. I loved the california roll even though that is an amateur roll. I drooled over every bite (ok, maybe not) of the chicken pea pod dish. So yummy. I find myself dreaming of food.
I had dinner with my cousins Freeda, Shafeeg, and Fadi. Lorena, Ari, and Minos too. We shared some good laughs and reminisced about the old days.
I had an amazing dinner with my sisters and bro-in-law at Picollo Sogno. I had another glass of wine (shhh, don't tell my doctor). I swapped wigs with Layla, my niece. She rocks a mean pink mullet!
I went to a Bollywood Groove class with Rachel, Andrea, and my sister Hilda (who is in town the next 2 weeks). I got my heart pumping. It felt so go to be alive and to be dancing and working out. I was able to make it through more dance routines then last time.
I had dinner (I know, I eat a lot) with some high school friends Katie, Kitty and Jamie. We went to Retro on Roscoe and I danced my little heart out to 80's songs played by my favorite band Spazmatics!
So, yeah I had a busy week of work, food, dancing and laughing. The whole week I knew how important the following week was going to be. I had reached a milestone. 1/3 done with treatment. Repeat PET scan to check the activity of the cancer cells. An echo to see how my heart is holding up and if the ejection fraction is still low. But yet, I was still calm about going in for the scan. I even asked the nurse to take a picture of me after my scan. This machine is my enemy and my best friend. It told me I had cancer. It can tell me I'm cured. It can tell me my cancer returned (hopefully that won't happen in the future). I saw the this machine and said to it, "Hi dear friend, You are going to be good to me this time, right?"
So what were the results….
I emailed Dr. Gordon, I mean Disco Leo, if he had the results yet. He replied to me late that night but I was sleeping. Today, on August 9, three months later, my alarm wakes me up at 7am. I look at my phone to see if I have my envelope icon. I do! It's an email response from Disco Leo. I read:
"Noreen, Report looks great (just saw it) and I have not seen the scan myself but will tomorrow. All disease reported as gone. Looks like a non-significant area of inflammation in lung."
My CANCER is GONE! Am I in remission? I think so! I still have yet to hear the official words come out of Disco's mouth but I go in tomorrow for Round 5 of chemo and I will see him. I think this means no radiation and continue with chemotherapy for the next 4 month to make sure there is no reoccurrence. It's a blood cancer. Kill all those nasty cancer cells and make sure they never come back. I will hear the official words from him tomorrow if I am in remission. I believe the word Cured is used till after 5 years of remission, of being cancer free…but don't quote me on that.
I tell my mom right away. She sheds several tears of happiness, relief, joy. I have yet to cry tears of happiness. It hasn't hit me. Maybe because I need to hear it from Disco Leo. Maybe because I have 4 more months of treatment. This journey isn't over. It will never be over. I say that because I have a different outlook. I am entering a new chapter of this journey of life of being a cancer survivor.
Anyway, I woke up at 5 am this morning and had many random thoughts running through my head. I would like to share;)
First,
I had round 4 of chemo yesterday. It was much easier with the port. It hurt the first time when she "stabbed" me with the needle but they gave me a prescription for a Lidocaine cream to numb it up for next time. I love medicine! I had quite the entourage at my chemo session. Minos took me to the hospital, where I was greeted by my handsome cousins, Issa, Feras, and Malik. Then my buddy Andrea came by and Jenna my angel stopped by. So much fun! I was pretty beat after chemo. And am feeling tired today with an uneasy stomach. Good thing for Zofran!
Second, what a wicked storm last night. It woke me up and it was scary yet awesome. At least the storms are happening at night and not during the day so we don't get stuck in it. Although I love looking at lightning storms!
Third, can you take a guess of what the cost is of all my medical bills? Since April 1, 2011, my bills have added up to $132,000! Whoa! Thank goodness for health insurance. I do have a portion that I have to pay out of pocket but its not too terrible. Well maybe a little. This doesn't include my pharmacy meds and wigs and parking. But luckily I have awesome support. I got one of my wigs covered by Amy's sister-in-law's foundation called For Mercy. Super grateful for that and I will pay it forward! My pharmacist, my legit pharmacists, over at CVS on Irving and Western have been nothing but fantastical! Ali and Mark take such good care of me with their follow up phone calls, candy in my prescription bag, and working on my stupid insurance. I am shocked that several of my meds aren't covered. They gave me a 25$ giftcard to help cover the cost of my last prescription. Awesome people! Just in case you didn't know I take 3 meds minimum a day and can go up to 9 a day depending on symptoms, poop control, and my antibiotics that are taken 3 times a week. All preventative meds to help when my counts are low to steer away any infections, colds, viruses, whatever. And the parking (or barking as my fellow arabs would say because they have a hard time saying the "p"), about a month into my cancer world I learned that the American Cancer Society provides free parking vouchers for each visit related to the cancer at Northwestern. That saves me about $40-80 a month. Again so grateful for all of this support.
Fourth, I seriously think I have the whole world in my hands...My catholic school girl is coming out because all I hear is "he's got the whole world in his hands..." one of my favorite Jesus songs. Ha. I have people supporting me from all over the world. I have family and friends everywhere, It's amazing. I have a load of my former athletes that have given me so much support and have reminded me how much I love being an athletic trainer. They have reminded me that the care I provided for them was appreciated and they would love to show their way of caring now. I have had my Bear run a race in croatia for me, I have had one of my lovely softball girls send me a handmade quilt, which I absolutely love, I have received flowers and loving words from all of you. All of you are so dear to me. You made my years as an athletic trainer at UIC and DePaul memorable and heartwarming!
My coworkers! You doves are the bomb! I couldn't have a better team of co-workers with all the support and help you have provided. Go NovaCare!
My dearest and closest friends. Words can't express what I feel. You have all done so much for me and supported me every step of the way. To my Justin Bieber life size, to the "no." necklaces, to the numerous care packages with loads of goodies and Cosmo magazines and skin care products, to movie nights at my place or at the theater, to golfing and bollywood dance, and to the pure laughter you give me everyday that keep my spirits up and especially the love you pour out every single day. I love you!!
My angel, Jenna. You and I are truly Lymphoma Soul Sisters. So grateful for you. You have no clue! I will get back to you in my sixth thought;)
Fifth, my family! I have some amazing sisters (and bro in law) an incredible mom, a guardian angel above...my pops, and awesome aunts, uncles and cousins and a beautiful niece. My family give me so much love it's disgusting (this means that it's a good thing). I, again, am at a loss of words to describe these feelings. I am one of the luckiest girl to have such an amazing family. And mom, you truly rock my world. I threw you a curve ball. Your baby girl has cancer but I am a fighter just like you! I don't know how you do it but you just provide so much care and love that I hope one day I will do the same to my little noreens. I love you and all of you!
Sixth, my pops. Of course I think about him a lot. I always wonder what he would have said the day I found out I had cancer. Perhaps he would say " Noreen, you will be fine. Now eat mushrooms!" I find myself doing little things and I realize my dad used to do these things such as the way I wash dishes, or twiddle my toes (ha), my mannerisms, my smile, my caring heart. It's him! My dad would give the clothes off his back or our home if he could to a homeless person. That was just the kind of person he was. A man with a golden heart! He is my guardian angel from up above. Watching over me, my mom, my sisters, Layla, Elise, Anna, Tanja and Maya and my doggie Morgan. He sent me a real life Angel, Jenna. And I find it comical that he sent me a Jewish angel because we all know the debates my father has had about the Jewish community. I mean my sister married a Jewish man and he is amazing! We all love Mark! Ok, don't read this the wrong way but again it just shows how we are all connected! Pops, you know how to make me laugh even from up above. Thanks pops! I owe you a visit. Love you Baba!
Finally, what states and countries do I have in my hands? Here are the spots where all this positive chi is coming from:
Illinois *duh
Indiana
Michigan
Wisconsin
Iowa
Minnesota
Missouri
Kentucky
Georgia
Florida
Pennsylvania
Connecticut
Massachusetts
NewYork
Texas
California
Nevada
Arizona
Colorado
Hawaii
Canada
Jordan
United Arab Emirates
Serbia
Croatia
Germany
Ireland
Australia
Japan
Netherlands
England
I seriously have the whole world in my hands. Thank you to all of you!
I opted for the port. I had to save my veins. I had 4 bruises on my arm from the last infusion. My mom said I looked like I was a heroin patient. I can't have that! The port is a nice alternative. I had the procedure today and basically they put a "port" in the right side of my chest with a catheter (underneath my skin, and over the collar bone) into my jugular! Crazy huh?! Add 2 more scars to my chest and now I have 4! I just hope the scars heal nicely. I love wearing strapless dresses!
Here is a video clip of what a port is and the procedure.
Earlier this week, I went to a Bollygroove class. Rachel found this awesome dance/cardio class called bollygroove that does Bollywood style dancing. With a whole bunch of "cheesies" and "light bulbs", Rachel and I danced our butt off. It was such a great workout. My heart was pounding fast and I was definitely out of shape. It felt good to sweat from working out and not this darn heat! I had so much energy after but quickly fell into a food coma right after dinner.
In no time Rachel and I will conquer this!
Round 4 of chemo is scheduled for July 27. Then my follow up PET scan is August 8. We are hoping the mass will be gone and the cancer will be out of my body. If so, Chemo will continue for four more months but no radiation will be needed. If the mass is still present and they see "cancer" activity, I will need radiation. Keep those prayers and thoughts coming because I do not want to go through radiation! Love you bunches!!
Do I have to tell myself everyday, you will get through this? Do I have to talk to my cancer cells and tell them to "go away!" so they can go away? When I feel sharp pains in my chest, do I just ignore it or tell my brain...CHECK YOURSELF? What do I do? Well, everday is a different day. Everyday is a step closer to being cancer free. Everyday is a different emotion, an emotion that I may have never experienced and an emotion that I am not exactly sure how to process. Everyday is a different symptom, another reminder I am not well and I am not myself.
I have had a lot of time to think this past week. And a lot of time to say F@!# YOU CANCER. I was at the movie theater watching Transformers (I love Shia) and my chest pain was acting up. I am told that the cancer pains I am experiencing are my nerves talking and the chemo working and destroying all those nasty cancer cells. Or the cancer cells exploding in my chest, as Jenna, my angel, would describe it. But the pain really sucks. I can't even sit comfortably without having stabbing pain here and there. I am sitting there saying to myself, "Really? Damn you cancer! I can't believe I have cancer and that I am going through this." I go back the feeling of shock and denial. I don't believe I have cancer.
The day before Transformers, I meet up with Jenna to help out with promoting her Twist Out Cancer event. We call ourselves the Lymphoma Soul Sisters. We are working on a dance video to premier for the Aug 11 event. And as we are recording and replaying the video, for the first time, I actually see and hear myself saying I have Hodgkins Lymphoma. I didn't know how I felt about it. It was weird. I stored that thought away because I was having a good time with Jenna. But I certainly thought about it all weekend.
At the beginning of this week, I was driving with my friend Ali to meet a mutual friend who just finished her battle with Hodgkins. Seriously, there are way too many of us out there! Anyway, during our drive, I bring up the video thing to Ali. Having a hard time putting a word to the feeling I was experiencing, Ali sums it up perfectly for me. She said it was the first time I was labeling myself as a cancer patient. She reminded me that I didn't like it when the oncofertility specialist kept referring/labeling me as a cancer patient (and not my name), and I was pretty upset and mad about that. The hard part about that time was that I was just learning that I had cancer. Let alone I had someone "labeling" me as a cancer patient when I didn't even have a second to process it. Now that I am about 2 months into this fight, I for the first time, heard those words come out of my mouth. Yea, I tell people I have cancer. But I was seeing myself saying it, feeling it, and living with it. Accepting it perhaps. I don't know. It's just funny because the other day when I was watching Transformers, I was not having any of it. None of this cancer nonsense. But the next day I was connecting with it. This just shows the ups and downs I deal with everyday. Everyday there is something new or something old that surfaces. Or some new discomfort or pain or the same run down feeling. But then I tell myself to remain strong and positive. Use my brain and its' immense healing powers. Mind over matter. So everyday I check myself before I wreck myself. Word!
Round 3 of chemo today. I feel out of sorts. I am not getting chemo on my typical wednesday. I am scheduled for the afternoon instead of in the morning. I start off the day working. I get some things done. My sister is taking me to chemo today and Deb is meeting us there.
We stop at Panera on the way so I can grab a quick lunch. I am waiting in line. There are 8 kids running around and the next thing I see is this kid vomiting on the floor. I get the heck out of there. No thank you!
We head to the hospital and Deb meets us there. I get my blood check and all my counts look great. I bounced back! My white blood cells and Neutrophils are back in the normal range. I am relieved. I get placed in a room, but not my usual room. I have no bed this time. Celia starts preparing me for my iv. We put a hot pack on my arm. She pokes me once, then twice, then a third time. Unsuccessful. She was able to get in my vein but my blood flow was poor. We need to have proper flow because my chemo drugs are caustic and can damage to my pretty little veins. Celia gets another nurse to try. Her name is Cheryl. She immediately asks me to change my music because she was not having Gnarls Barkley. Deb changes the music for her and she is happier. She pokes me 1 time. Unsuccessful. She says I am valve-y, whatever that means. We discuss getting a pic line. This is were they put a line in my inner arm. I feel pretty upset because I don't want to have a problem with chemo and I don't want a pic line. I don't want it to get postponed again. I tear up. I am frustrated. Cheryl tries again. As she is poking me again she says to me, "Baby, if you can get through a pap smear, you can and will get through this" I immediately laugh. She gets in the vein. Success! She gives me a big hug. Then brings me candy and says I got a star for today for being the best patient:)
Wonder Woman with some barbie on her shoulder;)
We start the Zofran (anti-nausea). Then the Zinecard (heart meds). I immediately get dizzy and everything I see starts spinning. I lay back and recover after 15 minutes. Celia puts me in another room. We start chemo this time and she administers my Adriamyacin, then Bleomycin, the Vinblastine. We then get my final chemo drug started on IV drip. I get immediately tired.
Beth, the social worker stops by and we chat. Beth always does a great job of checking in with me and makes sure I am doing well. I start telling her the latest with me, my wig story, and some other stories about my BM. I learn that she too had Hodgkins at the age 20. She is 31 and a survivor. We start talking about the word survivor and I tell her I can't wait to be a survivor. She tells me, "Noreen, you are a survivor today and everyday. You are surviving each day of this journey" I guess I never looked at that way. Then it leads us into another discussion. I tell her that many people say I am an inspiration, courageous, and brave. I often don't know what to say to people when they say that besides thank you. I feel I have no choice to face this disease with a positive attitude. I am not a negative person. I would be this way even if I didn't have the Hodgy. She says maybe people are reacting to the way I am handling this and friends and family know what kind of person I am and it is truly showing now that I am going through this. She definitely brought some insight for me today. Thank you Beth!
We get done with chemo and Celia and I start talking about getting a port. A port is this device that gets placed in my chest and connected to a main vein. It has a rubberized center which gives easy access for IV's and shots and what not. This is a way to save my veins and it will be less frustrating for me and them to find a vein that is "working". It is another surgery but I am sure it's well worth it. The sucky thing is that this will be a 3rd scar on my chest. Another war wound, another reminder I will face everyday of what I went through and will overcome one day. Another day to shout "Oorah!"
I am leaning towards the port. I need to save my veins. We wrap up and we get going. I am extremely tired which again this is not normal for me after chemo. I get home and my Aunt Intesar (really cousin) and Uncle Maurice are over. It's so good to see them as they always make me smile and laugh. My little terror of a niece is over as well running around like a mad woman. My aunt an uncle give me this sweet pajama set. I put it on immediately. We eat some dinner then I go upstairs and nap. Still pretty tired. I slept for maybe 15 minutes but it felt like I was out for 1 hour. I hear Ali talking...she is at my apartment. She came by to give me a special gift. I actually know about the gift. It's a necklace. And this is how I knew. I stopped by our Lakeview clinic on Friday to say hi to my coworkers and show them my newly buzzed head. I then look at Bethany's necklace and say "wow, that's really cute". She has this look on her face like "Oh shit". It clicks. Someone a few weeks back mentioned something about a necklace and I didn't ask any more questions. The necklace is silver with an id tag. On the tag it reads " no.". I say oh the "no" is for my nickname and it also means "no" to cancer. Then Laura turns her necklace around and I see she has it too! Anyway, I went back and forth as to wheher I should tell Ali I knew. I know she was super excited about it. I didn't mention anything yet but it does come up. I open the box and read a note from the designer. She said she is so happy to be making these necklaces for me and my friends. I open the box, and of course I love it! I see names of my friends that have purchased the necklace. This is a nice surprise. It really hits me. I have so many friends and family that love me. I have so many friends that are supporting me every step of the way. I am extremely touched and grateful. I give Ali a big hug. Even though I knew about the necklace I was still surprised. I told Ali I saw it a few days ago and she didn't care at all. She said she didn't tell anyone to keep it a secret.
I was sitting and admiring the necklace. I start tearing up a bit because I am so touched. I also feel sad for some people that are fighting cancer alone. It's not fair to them. It's not fair to anyone really. I send Ali a text "You got me tearing up! I am so lucky to have you and everyone. There are people out there with no one to help and I feel so sad about that. But I feel so loved and supported and it's a true blessing. Thank you!" She replies back, "you DESERVE all the love in the world. We are lucky to have YOU! You are a blessing and we love you!" Just typing this makes me tear.
She sends me the email that she sent out to our friends. The opening paragraph is beautiful:
Hello Friends of Noreen!
In an effort to show our support and love for Noreen we have created a custom-Noreen necklace. We found a modern artisan jewelry artist who hand makes "i.d. plate" necklaces. They are funky, simple, and classy, and I think they would make a great statement of support for our friend. The necklaces are elegant, eclectic, and unique as our Noreen is, and we want to invite anyone and everyone to rock one in support of her and as she undergoes treatment and recovers from lymphoma. She has been surrounded by so many family members and loved ones and this would be one more way we can jointly remind her that she is loved and cared for. We all contribute differently, and aside from our physical presence and words of love and support, it would be awesome for our immense network of friends and family, people she has trained and cared for, and people that adore her to be able to send our message in a shared way that says we are all behind her.
Seriously! How awesome is she for doing this?! I love you Ali! I love all of you who are supporting me. Thank you. Thank you. Thank you!
Attached are pictures of the necklaces:
And a video for my latest obsession...this tune has a happy beat! I am an escapee of Cancer. It's taking me on a messed up ride but I will escape!
I had a great 4th of July weekend. Saw lots of friends and family, did some dancing, played a few games of Washers, and laughed a lot. On July 4th, I woke up feeling exhausted. I was getting the chills, my gums were sore, I didn't feel well. I took my temperature and it was 100.4. My nurse said if it ever gets to that temperature call the doctor. So it's 8 pm on 4th of July, not thinking Disco Leo would answer, I call him at home. He answers! He calls in a prescription for different antibiotics.
july 5 2011
My temperature is 101.3. I email the medical team. Disco Leo asks me to come in and get some bloodwork checked. Fever breaks but then comes back later that night in the 100 range. Counts are low and my absolute Neutrophils are at 0. No infections show up in the bloodwork/cultures.
july 6 2011
I go in for my scheduled infusion. They check my counts again. I end up being evaluated by Disco Leo and he says that we are going to postpone treatment to Friday or Monday. I'm pretty upset because I don't want to be off track and I want to get better fast. My Absolute Neutrophils are still at 0 but I have some baby cells being created, healthy cells that help with the fight. Disco Leo says 1% of people get unexplained fevers. Leave it to me to be placed in that percentage. Chemo gets pushed to July 11!
My roommate Amy calls me and tells me my wig was at the store. Here's the story; 2 weeks ago I went to a specialty store to get fitted for my wig. We order a few options and the lady said it would be there in 2 days. I schedule my appt for the following week. When that day came, I called and rescheduled the appt because I wasn't ready. Yes my hair was shedding, but not falling out in clumps. I decide to reschedule to the day before chemo (which was postponed), so I can mentally prepare myself. And besides I was certain that the 3rd round of chemo was going to officially speed up the hair loss. Right as I was about to leave, the store calls me. "We don't have your wig. I don't know what happened. I am so sorry". I was pretty upset. Don't they realize that this is an emotional thing!!! Amy and Renee call them to sort things out. Amy tells them maybe they should have told me that the wig was not in yet when I called the week before, so I could be prepared that it may be there or it may not. So back to Amy calling me the day it came. Since I didn't have chemo, Minos, Deb and I go to the store for my wig appt. I failed to tell you that they had my wig all along and got the order mixed up with another Noreen. First of all, how random is it that there are 2 Noreen's getting wigs. People, check the last name! Minos is driving my car and insists on playing Chiddy Bang. I say no. He basically became a brat and I cave and let him have his music. After a song and a half play, I switch to my ipod and play Justin Bieber. Minos freaks out...ha! Then I went back to some music he would like...Matt and Kim. Good pump up music for a trip to get your head shaved! We get to the store and they apologize over and over again. I sit down in the chair. We do a few things before the official buzz. Minos is intrigued with all the breast prosthetics and the options of nipple colors. The lady grabs the clippers. I was pretty stoic up until this point. Once the clippers touched my head, I lost it. I was crying so hard. My hands were covering my face and I was balling. Deb held my hand and comforted me the whole time. Thank you Deb. I couldn't look in the mirror. I took my hands away from my face and kept my head down. I didn't want to face this. But I had to. I slowly looked up and saw my newly buzzed head. Is that me? Really? I immediately thought that I looked like how I did when I was a baby. When I was baptized in Jordan, they cut my hair so short like a boy. 30 years later I am blessed to look like a 1 year old again in 31 y/o body without the olive oil on my forehead. In a way, this was aother baptism. To be free of everything and start new. To take these nuggets I learn throughout my journey and take another step into this new chapter in my life.
The wig lady places my new wig on and it was amazing how it looked so natural. It was me! But I still felt that was not the true me.
Minos, being the superman he is, gets his luscious greek locks buzzed as well. Oooweee he is so handsome!
I stopped at Mac Daddy. MacDaddy is the salon I go to and my friend/stylist cleans up my buzz cut for me and cuts my wig to look a little more like me. We decide not to cut too much off because it won't grow back. Duh!
So a few days have passed and I have been rocking the buzzed look. I actually am getting used to it. I did feel weird going into the public, I'm not going to lie. I felt like people were looking at me. Were they wondering if I was sick? Did they think something tragic happened, like I went mental like Brittany Spears? Did they think I was a european model? Ha, I didn't really think they thought that last one but I felt self-conscious. I went to a friends going away party and it was my first major public appearance with the new do. I felt, well, I actually don't know how I felt. It was different. And I didn't like it. I felt trapped and I'm not sure why. I knew I was comfortable with the new look. So I couldn't understand this feeling, and as I write this, I think isolation or alone would be good words to describe it. Again, another lesson for me that I am still trying to figure out. Another emotion that surfaces. Another day into this journey. Another day closer to getting better and being stronger. I feel like yelling a "Ooh-rah" like the marines right now! OooooRAH!
