May 27 2011
The night before Disco Leo gives me a call with the results of my echo and says...
"Noreen, your ejection fraction of your heart is surprisingly low. Normal is 50-60% you are at 35%."
WTF?! What else can go wrong. If I have a heart issue, it changes the whole treatment plan! We are not sure if I fainted because of dehydration or because I may have a heart issue. Um, didn't I go to the freaking ER in December for chest pain?! They said I was fine! Anyway, we get a MUGA scan scheduled for after my bone marrow biopsy. The MUGA will give us a better read on my heart.
Lindsay picks me up and we catch up on the usual. She is such good mom to me:) We get to NW and I get prepped for the bone marrow biopsy. Lindsay went to grab me some food because she wanted to make sure I was eating! The doctor explains how he will go into my iliac crest (or hip bone) and will numb me up. Unfortunately he can't really numb up the area completely because he needs my feedback to tell him when I have pain. He is essentially going in blind and pulling a small little cork of my bone, but as he probes he will hit some nerves in the area. If I feel a sharp pain, I have to say pain, and he retracts the needle and tries again. I'm on my stomach and I can't see everything he is doing but he did a good job of explaining everything to me that I am not too nervous. I feel pressure and discomfort. I'm not crying. Yet. He gets to the "corking" process and I say "Pain", he tries again, "Pain", he tries again "Pain". I start crying. I feel such a weird pressure and pain. He tries again and starts the "corking". I feel like someone is hammering my bone from the inside. He pulls the needle out and says we are done. We got a good piece. First of all, I am lucky that they didn't have to do it on both sides of my hip as some patients do. Lindsay did such a great job of comforting and calming me. I think at one point she wanted to take the Dr. out! Ok, so it wasn't that bad. But I never want to go through that again!
The resident ends up wanting to give me a bag of fluids because I fainted the day before. As I was receiving fluids, my MUGA scan got scheduled. My day started at 11 am at the hospital and now its 3 pm. I go register for the MUGA scan and the front desk says I have no insurance. I get a little pissy and snap. "I've been here like 5 times the past week. I have insurance. It's in the system." I end up calling and sorting it out when the guy could've easily done that for me but whatever. I'm real crabby at this point. I get called back for the MUGA. The nurse explains that the test is about 2 hours. I lose it once again. No one told me how long the test would be. No one said I would have to get poked with needles again. At this point, I feel as if I'm not human. Getting poked and prodded every minute. I am completely frustrated, broken down and sad. On top of that, I was hungry! Luckily, they injected me with some stuff, let me go get a quick bite to eat and then take the scan. Ughhhh! This is getting real old real fast and it hasn't even really started.
I get a phone call the following Wednesday with my MUGA results. 57%! Good. But we can't have 2 tests that don't match up. So Disco Leo orders a cardiac MRI and a consult with a cardiologist. Done and done...
Cardiac MRI on June 4....
I'm scheduled for chemo June 8 and we still don't know what chemo regimen I will be on. ABVD is every other week with no radiation or Standford V every week with radiation.
I get a call from Disco Leo and he says that my cardiologist will follow up with me but they all decided to start with the ABVD treatment along with heart meds.
Next stop is round one of chemo to kill this nasty bitch of a disease!
Thursday, June 30, 2011
Can I get a side of 4 stitches please?!
May 25-26, 2011
It was a long day scheduled for appts. I had a CT scan of my abdomen to see if the disease had spread. I don't do so well with CT scans. I vomit from the iodine and now this time I had to drink that Barium crap. Oh, it's making me gag just thinking about it! Ugh!!! After that, I had to see Dr. D to assess the wounds from surgery. Then spoke to the social worker and then had a dentist appointment. I started my day at 8 am at NW and it is now 2:30pm. I had maybe a sip of water and a few bites of a sandwich. I was so tired I went to bed. I slept from 4 pm to 7 am the next day! Not a good idea. I woke up, went to the bathroom, walked out. The next thing I remember is waking up on my dining room floor with blood in my hands. I blacked out, fell and busted my chin on the hardwood floors. I actually dented a woodplank and cracked it. I was lying there in my back and luckily Amy was home. I called for her and she came to the rescue. Apparently I had a 5 minute conversation with her and I did not remember any of it. Ha. I had my lung function test and echo scheduled that day but canceled the lung test and made it to the echo for that afternoon. On my way to the hospital, I stopped at Dr. B's office to get my stitches. She ordered at CT scan of my head because I had signs of a concussion. She also wanted to make sure I didn't fracture anything. I got to Northwestern, had the CT of my head (no bleeder and no fractures-I'm so lucky!) and then had my echo. Minos was flirting with the echo technician...he would! I then went home and got ready for my next test for the next day. The dreaded bone marrow biopsy! AHHHHH!
It was a long day scheduled for appts. I had a CT scan of my abdomen to see if the disease had spread. I don't do so well with CT scans. I vomit from the iodine and now this time I had to drink that Barium crap. Oh, it's making me gag just thinking about it! Ugh!!! After that, I had to see Dr. D to assess the wounds from surgery. Then spoke to the social worker and then had a dentist appointment. I started my day at 8 am at NW and it is now 2:30pm. I had maybe a sip of water and a few bites of a sandwich. I was so tired I went to bed. I slept from 4 pm to 7 am the next day! Not a good idea. I woke up, went to the bathroom, walked out. The next thing I remember is waking up on my dining room floor with blood in my hands. I blacked out, fell and busted my chin on the hardwood floors. I actually dented a woodplank and cracked it. I was lying there in my back and luckily Amy was home. I called for her and she came to the rescue. Apparently I had a 5 minute conversation with her and I did not remember any of it. Ha. I had my lung function test and echo scheduled that day but canceled the lung test and made it to the echo for that afternoon. On my way to the hospital, I stopped at Dr. B's office to get my stitches. She ordered at CT scan of my head because I had signs of a concussion. She also wanted to make sure I didn't fracture anything. I got to Northwestern, had the CT of my head (no bleeder and no fractures-I'm so lucky!) and then had my echo. Minos was flirting with the echo technician...he would! I then went home and got ready for my next test for the next day. The dreaded bone marrow biopsy! AHHHHH!
Sunday, June 26, 2011
Paging Dr. Gordon (aka Disco Leo)
May 23 2011.
Me, my mom, Ali, Minos, Dr. V, Dr. Gordon.
Let the 2 hour consultation begin...
Throughout this whole "meeting", I am still in disbelief! "I AM NOT A CANCER PATIENT"
We talk about ABVD and Stanford V chemo options, possibility of radiation 2 cycles (months) into treatment (which we are hoping I don't need), potential side effects and late term side effects, relapse, fertility, and so much more.
Ali wrote everything down for me that was discussed and made sure I had asked all the questions I had written down. This was extremely helpful as your mind is everywhere!
We discussed fertility. I am thankful that this was discussed as I soon learned not everyone had the fertility option discussed with them when they were newly diagnosed with cancer. With ABVD, there is a 10% risk of infertility. As the oncofertility specialist explained all my options, I felt real uneasy. I won't go into details but I didn't want to prolong my treatment. If I went with the egg cryo-preservation, I would have to wait an additional 2 more weeks for chemo to get started. See, they shoot you up with hormones, and then do the procedure to retrieve the eggs. Well, when you do the procedure, it also ages your ovaries. I'd rather take the 90% chance and have my ovaries be the age they are supposed to be when that time comes for little noreen's. (Side note, Minos was really intrigued with the female ovulation cycle)
We discussed all the next steps: echo, lung function test, and bone marrow biopsy.
The social worker also discussed all sorts of resources and support groups as I go through this fight.
They main thing I took away from this visit is that Dr. Gordon never said "This cancer is aggressive. You have 6 months". He said "It's curable! It's treatable. It's the best cancer to have if you get any cancers. You will do just fine!" I'm counting on you Disco Leo (Minos came up with that name)!
This is the time where I have to let go and let my medical team take care of me. I don't know what lies ahead. I am scared. I am sad. But I am ready to get back to being myself and shining everyday! I want this disease out of my body! I will not let this disease win! My body and life are way too precious. I have a full life to live, laugh and love!
Me, my mom, Ali, Minos, Dr. V, Dr. Gordon.
Let the 2 hour consultation begin...
Throughout this whole "meeting", I am still in disbelief! "I AM NOT A CANCER PATIENT"
We talk about ABVD and Stanford V chemo options, possibility of radiation 2 cycles (months) into treatment (which we are hoping I don't need), potential side effects and late term side effects, relapse, fertility, and so much more.
Ali wrote everything down for me that was discussed and made sure I had asked all the questions I had written down. This was extremely helpful as your mind is everywhere!
We discussed fertility. I am thankful that this was discussed as I soon learned not everyone had the fertility option discussed with them when they were newly diagnosed with cancer. With ABVD, there is a 10% risk of infertility. As the oncofertility specialist explained all my options, I felt real uneasy. I won't go into details but I didn't want to prolong my treatment. If I went with the egg cryo-preservation, I would have to wait an additional 2 more weeks for chemo to get started. See, they shoot you up with hormones, and then do the procedure to retrieve the eggs. Well, when you do the procedure, it also ages your ovaries. I'd rather take the 90% chance and have my ovaries be the age they are supposed to be when that time comes for little noreen's. (Side note, Minos was really intrigued with the female ovulation cycle)
We discussed all the next steps: echo, lung function test, and bone marrow biopsy.
The social worker also discussed all sorts of resources and support groups as I go through this fight.
They main thing I took away from this visit is that Dr. Gordon never said "This cancer is aggressive. You have 6 months". He said "It's curable! It's treatable. It's the best cancer to have if you get any cancers. You will do just fine!" I'm counting on you Disco Leo (Minos came up with that name)!
This is the time where I have to let go and let my medical team take care of me. I don't know what lies ahead. I am scared. I am sad. But I am ready to get back to being myself and shining everyday! I want this disease out of my body! I will not let this disease win! My body and life are way too precious. I have a full life to live, laugh and love!
Saturday, June 25, 2011
May 19th...
is my sister's wedding anniversary...
is Malcolm X's birthday...
is my official cancer diagnosis...
Classical Hodgkins Lymphoma Nodular Sclerosis
Dr. D said its the best one to have and its very curable. He said I will do just fine.
Um, I don't want cancer. I had a summer planned of ridiculousness. I had planned with Ali the summer of side ponytails, scarves and hats. Beach volleyball, Sunday funday at the pool. Maybe even meeting a normal guy for once.
Anyway, I was in shock, disbelief, and honestly numb!
As I began to tell friends and family, I still didn't believe that I was saying I HAVE CANCER. Everyone I told had very different reactions. Its shocking and sad I know. But everyone I talked had no doubt that I would be just fine and kick ass!
Next stop, Dr. Leo Gordon!
that's a soft and clean looking tumor!
May 16 2011.
So I had a wonderful weekend at my cousins wedding. Issa and Layla, you threw a fantastic party! Certainly a nice distraction for me before surgery! I love you both! I had my PET scan but still did not know the results. I am getting ready for surgery at my apartment and my bestie Rachel surprises me and at 5:15 am! She wishes me luck and we chat for a bit then hug! Rachel, that meant so much to me! Thank you and I love you long time;)
We get to the hospital and I am actually calm. I am with my sister Helen and my mom. I am more nervous about my mom because she is so worried. I get called back and all the prep work begins. Dr. D, my surgeon, checks in with me. He is the sweetest man ever! He tells me that my PET scan show activity in only the left side of my chest above my diaphragm. This is good news everyone! It hasn't spread. He also asks if my back hurts. "Dr, my back always hurts". " The PET showed you have arthritis in your back" Great!!!
I go into the operating room and honestly it's a blur. I get my sleepy drugs and then next thing you know I am awake in the recovery room. My throat and chest feel uncomfortable. My first words to the nurse was, "Do I have cancer?". She said I have to wait to talk to Dr. D.
I see my sister and mom in my room. They have a very concerned and worried look on their faces. I asked them if Dr. D talked to them. Helen starts explaining that Dr. D made an incision by my collar bone and couldn't get a good sample and biopsy of the tissue from the mass. He then had to make another incision a few inches down between my ribs. He was able to get good samples to send to pathology. She continued to explain that Dr. D felt that this was lymphoma and that I will need chemotherapy. Again, I start crying.
Dr. D comes in and explains everything to me and said my tumor looked really clean and soft. He said they are usually dark and hard. Ha, what does that even mean?! He said he hopes to have an answer by Wednesday as to what we are dealing with. So we wait....
So I had a wonderful weekend at my cousins wedding. Issa and Layla, you threw a fantastic party! Certainly a nice distraction for me before surgery! I love you both! I had my PET scan but still did not know the results. I am getting ready for surgery at my apartment and my bestie Rachel surprises me and at 5:15 am! She wishes me luck and we chat for a bit then hug! Rachel, that meant so much to me! Thank you and I love you long time;)
We get to the hospital and I am actually calm. I am with my sister Helen and my mom. I am more nervous about my mom because she is so worried. I get called back and all the prep work begins. Dr. D, my surgeon, checks in with me. He is the sweetest man ever! He tells me that my PET scan show activity in only the left side of my chest above my diaphragm. This is good news everyone! It hasn't spread. He also asks if my back hurts. "Dr, my back always hurts". " The PET showed you have arthritis in your back" Great!!!
I go into the operating room and honestly it's a blur. I get my sleepy drugs and then next thing you know I am awake in the recovery room. My throat and chest feel uncomfortable. My first words to the nurse was, "Do I have cancer?". She said I have to wait to talk to Dr. D.
I see my sister and mom in my room. They have a very concerned and worried look on their faces. I asked them if Dr. D talked to them. Helen starts explaining that Dr. D made an incision by my collar bone and couldn't get a good sample and biopsy of the tissue from the mass. He then had to make another incision a few inches down between my ribs. He was able to get good samples to send to pathology. She continued to explain that Dr. D felt that this was lymphoma and that I will need chemotherapy. Again, I start crying.
Dr. D comes in and explains everything to me and said my tumor looked really clean and soft. He said they are usually dark and hard. Ha, what does that even mean?! He said he hopes to have an answer by Wednesday as to what we are dealing with. So we wait....
What Does This All Mean?
I knew my body didn't feel right. I wanted to take naps all the time and when I did, I would nap for 3 hours. But it was so hard to tell what was causing my fatigue, joint pain and muscular aches. My father passed in April 2010, I had a very busy work schedule, I had moved back to the 2nd flr apt of my parents home to be closer to my mom and help her through the loss of my dad, I wasn't working out as much as I used to, I had a loss of appetite, I lost muscle mass (my ass is non-existent!) and I was ALWAYS TIRED! That's all normal right?!
I started to notice the fatigue increase around October 2010. I started noticing bilateral hip and knee pain. It would take me 3 days to recover after a night of dancing. And if you know me, my dancing requires total body movement!
Then December 2010 I had intense chest pain! WTF, am I having a heart attack?! Noooooo! My PCP was out of town so her office said go to the ER. I really didn't want to but my boss convinced me to. "You are a healthy, young girl! It was probably anxiety". Ok. Thanks NW for charging me loads of money to tell me that ;)
I was still having weird intermittent chest pains. My body ached all the time. I would roll out of bed and feel like an 80 year old. It would take me 10 minutes to get moving and the thought of hitting the stairs in the morning...HELL NO! I would look around to make sure my neighbors weren't looking because I was so embarrassed how I looked going down the stairs in the morning. It was time for my physical!
So I went to see Dr. O in Feb 2011 for my physical and mentioned all my symptoms. She just said "you were an athlete, your body took a beating, it's just catching up now". Riiiiggghhht! We took some basic labs and everything was normal. I get a message from her that my blood work was perfect. It's so hard being perfect...JUST KIDDING! On a side note, I notice a small red bump on my left shin. I showed it to Dr. O and she said just keep an eye on it. Which I did...
Come March, the bump on my shin looked bigger. I went to see a foot doctor who said I had a subdermal infection and treated me with antibiotics. 6 days later my ankle blew up..I had freaking CELLULITIS! Seriously?! Seriously! I thought I picked it up from working a high school wrestling meet because we all know how nasty wrestlers are... eeeeeeekkkk!
I went back to my PCP to close out the case of cellullitis. It's all good!
"But wait Dr. O, I mentioned last time I have a lot of joint pain and am experiencing fatigue."
"I don't see that in my notes Noreen and I take excellent notes. You didn't mention it"
"No, I know I did."
"Well I don't have any record of you mentioning it"
(WTF - she made me so mad)
After a 5 minute debate, I simply asked her to check for Rheumatoid Arthritis. She said it doesn't run in my family so she didn't think I have it but we will check for Lupus, Lymes and RA.
Ok, if you know anything about Arabs, they will never see a doctor! So who knows if it runs in my family because my family would never get something checked out!
Anyway, a week later I get a VM..."Hey Noreen, it's Dr. O. I've got your lab work here and you don't have Lupus and Lymes but surprisingly your numbers for RA are elevated. I want you to see a Rheumatologist. I will have their office call you"
Ok, now we are moving towards some answers.
April- I see Dr. H, my rheumatologist. Super sweet lady! She does her exam and looks at my lab work and says "now I'm not convinced you have RA but there is something systemic going on. Let's take some more tests and take x-rays of the joints that are bothering you and we will follow up in a month."
May 5 2011- I see Dr. H. She says she still is not sure after review my bloodwork. My sed rate (red blood cell test that shows inflammation in the blood) is still elevated. But I failed to mention to you my lovely readers, I have noticed MORE BUMPS on both shins now and both ankles are swollen. So I show Dr. H the bumps and right away she said "I think this is Erythma Nodusum which can be linked to Sarcoidoisis"...Huh?!..."let's take a chest xray because we may find some enlarged lymph nodes." Okey-Dokey
May 6 2011- "Hey Noreen, your chest xrays are abnormal- I want you to get a CT scan of your chest."
May 9 2011- So I am getting my CT scan. They shoot the meds in, intense pain shoots to my chest and I feel like I am peeing in my pants. I sit up and tell the nurse I don't feel right and then I throw up. Ugh!
So I leave my appointment and then walk over to our Northwestern office. I have a meeting with a new hire to go over what I have been working on in our market. I get a phone call at 11 am..."Hey Noreen, it's Dr. H. I have your results from your CT scan and there is a lymphoma in your chest. I think we may be dealing with a blood cancer such as Lymphoma or Leukemia. I need you to see a Thoracic surgeon."
I lost it! I am balling by the treadmill at work. I ask my boss to come by me. I'm balling in the bathroom now saying "I don't know what this means? What is happening to me? What does this all mean?" over and over again.
Bless my boss because she dropped everything she was doing and calmed me down and called over to the hospital to get my next appointment sorted out. Thanks KB!
May 10 2011- The elevator stopped at the 21st floor and I see "Lurie Comprehensive Cancer Center". The thoughts in my head "Wow! Welcome to cancer! This is crazy, I don't have cancer". My dear friends Ali and Amy went with me to meet Dr. D, the chief of Thoracic surgery. We were put in a consultation room. I was a bit anxious and began to rummage through the room. Next thing you know I put in Three Men and a Little Baby ...VHS! Then, a doogie howser resident walked in and took my history. He had very small hands. Then Dr. D walked in and he says,
" This ism't fair, you look so healthy"
"Are you telling me I have cancer?"
...then he goes on explaining the golf size mass (5 cm-non-bulky) in my chest located in the anterior mediastinum (where the lungs meet) and starts explaining surgery, biopsy, lymphoma, thymoma, sarcoidosis. He is pretty sure we are dealing with Lymphoma and needs to find out if its Hodgkins or non-Hodgkins. He says the word chemotherapy and I start crying. This is not happening to me right now! Next step, PET scan and surgery!
I started to notice the fatigue increase around October 2010. I started noticing bilateral hip and knee pain. It would take me 3 days to recover after a night of dancing. And if you know me, my dancing requires total body movement!
Then December 2010 I had intense chest pain! WTF, am I having a heart attack?! Noooooo! My PCP was out of town so her office said go to the ER. I really didn't want to but my boss convinced me to. "You are a healthy, young girl! It was probably anxiety". Ok. Thanks NW for charging me loads of money to tell me that ;)
I was still having weird intermittent chest pains. My body ached all the time. I would roll out of bed and feel like an 80 year old. It would take me 10 minutes to get moving and the thought of hitting the stairs in the morning...HELL NO! I would look around to make sure my neighbors weren't looking because I was so embarrassed how I looked going down the stairs in the morning. It was time for my physical!
So I went to see Dr. O in Feb 2011 for my physical and mentioned all my symptoms. She just said "you were an athlete, your body took a beating, it's just catching up now". Riiiiggghhht! We took some basic labs and everything was normal. I get a message from her that my blood work was perfect. It's so hard being perfect...JUST KIDDING! On a side note, I notice a small red bump on my left shin. I showed it to Dr. O and she said just keep an eye on it. Which I did...
Come March, the bump on my shin looked bigger. I went to see a foot doctor who said I had a subdermal infection and treated me with antibiotics. 6 days later my ankle blew up..I had freaking CELLULITIS! Seriously?! Seriously! I thought I picked it up from working a high school wrestling meet because we all know how nasty wrestlers are... eeeeeeekkkk!
I went back to my PCP to close out the case of cellullitis. It's all good!
"But wait Dr. O, I mentioned last time I have a lot of joint pain and am experiencing fatigue."
"I don't see that in my notes Noreen and I take excellent notes. You didn't mention it"
"No, I know I did."
"Well I don't have any record of you mentioning it"
(WTF - she made me so mad)
After a 5 minute debate, I simply asked her to check for Rheumatoid Arthritis. She said it doesn't run in my family so she didn't think I have it but we will check for Lupus, Lymes and RA.
Ok, if you know anything about Arabs, they will never see a doctor! So who knows if it runs in my family because my family would never get something checked out!
Anyway, a week later I get a VM..."Hey Noreen, it's Dr. O. I've got your lab work here and you don't have Lupus and Lymes but surprisingly your numbers for RA are elevated. I want you to see a Rheumatologist. I will have their office call you"
Ok, now we are moving towards some answers.
April- I see Dr. H, my rheumatologist. Super sweet lady! She does her exam and looks at my lab work and says "now I'm not convinced you have RA but there is something systemic going on. Let's take some more tests and take x-rays of the joints that are bothering you and we will follow up in a month."
May 5 2011- I see Dr. H. She says she still is not sure after review my bloodwork. My sed rate (red blood cell test that shows inflammation in the blood) is still elevated. But I failed to mention to you my lovely readers, I have noticed MORE BUMPS on both shins now and both ankles are swollen. So I show Dr. H the bumps and right away she said "I think this is Erythma Nodusum which can be linked to Sarcoidoisis"...Huh?!..."let's take a chest xray because we may find some enlarged lymph nodes." Okey-Dokey
May 6 2011- "Hey Noreen, your chest xrays are abnormal- I want you to get a CT scan of your chest."
May 9 2011- So I am getting my CT scan. They shoot the meds in, intense pain shoots to my chest and I feel like I am peeing in my pants. I sit up and tell the nurse I don't feel right and then I throw up. Ugh!
So I leave my appointment and then walk over to our Northwestern office. I have a meeting with a new hire to go over what I have been working on in our market. I get a phone call at 11 am..."Hey Noreen, it's Dr. H. I have your results from your CT scan and there is a lymphoma in your chest. I think we may be dealing with a blood cancer such as Lymphoma or Leukemia. I need you to see a Thoracic surgeon."
I lost it! I am balling by the treadmill at work. I ask my boss to come by me. I'm balling in the bathroom now saying "I don't know what this means? What is happening to me? What does this all mean?" over and over again.
Bless my boss because she dropped everything she was doing and calmed me down and called over to the hospital to get my next appointment sorted out. Thanks KB!
May 10 2011- The elevator stopped at the 21st floor and I see "Lurie Comprehensive Cancer Center". The thoughts in my head "Wow! Welcome to cancer! This is crazy, I don't have cancer". My dear friends Ali and Amy went with me to meet Dr. D, the chief of Thoracic surgery. We were put in a consultation room. I was a bit anxious and began to rummage through the room. Next thing you know I put in Three Men and a Little Baby ...VHS! Then, a doogie howser resident walked in and took my history. He had very small hands. Then Dr. D walked in and he says,
" This ism't fair, you look so healthy"
"Are you telling me I have cancer?"
...then he goes on explaining the golf size mass (5 cm-non-bulky) in my chest located in the anterior mediastinum (where the lungs meet) and starts explaining surgery, biopsy, lymphoma, thymoma, sarcoidosis. He is pretty sure we are dealing with Lymphoma and needs to find out if its Hodgkins or non-Hodgkins. He says the word chemotherapy and I start crying. This is not happening to me right now! Next step, PET scan and surgery!
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