Annalee????

So Mike and I were sitting in the livingroom and we noticed we had a voicemail message.  We checked the message and it said "Hi, I'll just call back later".  We looked at each other and didn't recognize the name or number so figured it was a wrong number. 
Later tonight the phone rings again and we see it is the same caller.  I answer and there was a lady on the other end of the phone and she said "Annalee?"  I said yes.  She then said that this was going to sound very strange but her name was Annalee as well and she was wondering where I got my name from.  I didn't hesitate and I stated that I was named after the nurse who delivered me.  She then says...."are you Heilman?"  I said "yes".  She then said..."omg - Annalee Nicole"  I then said "omg are you Weiman - the nurse that delivered me?"  She said "Yes".  She then went on to say I see you have 3 beautiful children now.  FREAKY! lol   I said yes and she chuckled and said she saw my name in the paper for the Babies of 2010.  It all made sense then. 
She then asked " I trust all is well with you then?" And I told her of the news.  She immediately said "I don't want you to worry because Annalee is a very strong name and we are fighters"  She herself is a 7 year Breast Cancer Survivor.  She then gave me a pep talk and told me if I ever needed anything or wanted to talk she was available.  My heart is so full of the love and the selflessness of others is overwhelming.  I don't know how I could ever thank everyone enough! 
Why was it today when I was feeling low that she called to bring me back up?  It isn't like I have talked to her for years.  I know she called my mom when I was 16 to say hi and to see how I was but to call me today of all days is just plain weird.  My faith is becoming stronger that there is a plan...and everything is the way it is suppose to be right now!  I'm sure I will eventually see the bigger picture but for now - I must take things one day at a time.

I heard an ANGELS voice..his name is Jack Moon.

so I just received a phone call from Jack Moon...my new found Angel!  I joined the National Bladder Cancer Network and he is the President.  Joined with him is David Gutmann.  Together they are working very hard on this holiday to find me a highly qualified world renound Urologist to help me!!  They have 2 world renouned doctors on their board and they are trying to find out credetials of the Urologists here in Saskatoon and the local hospital cancer clinic!  He explained that there is really no research available for my cancer and not a lot of information but they are working with a bunch of professionals to get me the help I need!  He even explained another option of an Indiania Pouch which uses my large bowel and a stoma by my belly button for elimination.  He then went on to say there are highly qualified Urologists in Edmonton and if I am willing to travel that is a great place to go!  I don't care where I go..just get me help!  Oh did I tell you that I heard all of this becauase he personally called me to tell me I have a group in my corner and his words "YOU ARE NOT GOING TO DIE...WE ARE NOT GOING TO LET YOU"  It is so nice to have people who have had these procedures, know what I am going through and are knowledgable about bladder cancer and best of all HELPING ME!  I am so happy right now.  I have a smile again..because of angels - Jack Moon and David Gutmann! 

A glimpse of HOPE!

so during my research I came across Bladder Cancer WebCafe.  OMG...in less than 5 minutes after posting my story I had people who had bladder cancer and are survivors and are advocates reply to me.  they are both working together and making my case priority because of the severity of it.  I am hopeful again. The Canadian Cancer Bladder Network may be my miracle I am looking for.... They suggest I get a 2nd opinion immediately as a lot of the members on the board have had misdiagnosis.  I am so hoping they are wrong with my diagnosis and it isn't as bad as they say..but I am not hoping too high so I get crushed.  Just someone listening and on my side and knowing what I am going through is a million tonnes lifted off my shoulders....Today I have a GLIMPSE OF HOPE!

Happy New Year???? Nope back at the bottom

Mike asked if his old roommates could come over (good friends of ours) to celebrate New Years with us.  At first I really didn't wanna be around people just my family but then I said ya why not....try and make it a new beginning in 2011 knowing of the struggles I have ahead of me.  The evening went really well, my mind barely wandered, no tears...all 3 kids made it to midnight (well AJ fell asleep at 1130 but for some reason the flash of a camera at 11:58 seemed to wake him up! hahaha).  And Barenaked Ladies sang me into the New Year.  I kissed my kids, my husband and was smiling!  For those few seconds...I was happy again.  Cory and Candida left and I instantly fell asleep in the chair with my baby boy laying on my chest.  Mike wanted to move him but I didn't want him moved.  I wanted to cherish that feeling forever.  I never wanted him to leave and I was at peace with him there.  Mike finally put AJ to sleep and told me to follow..but I just fell back asleep in the recliner.  I got up at 430 and Mike had stayed up to make sure I made it to bed and then just cuddled me.  That is the best place - in his arms.  I fell back to sleep but woke up to terrible pains in my stomach and went to the bathroom to pissing blood again and bits of something.  I heard a pop...wondering if it hasn't come back already.  Looks like I may have an ER visit today...what a great way to start the New Year. I am back at the bottom again! ;(
Bella leaves for G'ma Annas today for the week...I don't know if that is a great idea...I need the distractions...but I also need to rest and gain strength for this battle.  One day at a time....my battle starts now.

No longer that robot

Well I woke up today and sat at my computer and the tears came uncontrollably.  It has hit me...hit me hard.  It is hard to breathe and my heart is aching so bad.  Bella wanted to cuddle and listen to I'm a Bee on youtube.  She sat on my lap and gave me a hug and I started to bawl incontrollably. She was so hurt and scared asking me not to cry as her eyes filled with tears as well.  Then she looks at me and says "I love you Mommy - I don't like when you cry.  Please don't cry Mommy."  All I could do is hold her tighter.  I love my little girl so much.  After I controlled my emotions I picked up AJ and danced and he just smiled and smiled.  I began to cry again wondering how many of these moments I will have with him.  He is so small. I want him to know me..know how much I love him...know that he is my hero because if it wasn't for him we would have never found this horrible tumour known as Wally.  Wally has left behind a world of destruction....but he will not win...I plan on stomping on any reminance of him.  I HATE WALLY SO MUCH.  YOU WILL NOT RUIN MY LIFE!  I WILL NOT LET YOU.  

A lot of family and friends have been doing research for me.  There are survivors out there....I just need to figure out a system to compile everything so when I talk to the doctor next week I have a page of questions, options and action plans.  I will be my own advocate..the doctors will not dictate a no treatment plan.  there are options out there...I will find someone to help me.  I must...I am only 35. 

Diagnosis in...

Dec 30 - 2:30 pm my life changed forever. 

I am lost for words. My breathe is gone... I can't breathe. My heart aches and tears rapidly flowing down my cheeks. Today they tell me there's a good chance I won't see my lil boy start school, my lil girl walk down the isle or give me grandkids, my Zach graduate high school. I plan on proving them wrong and fighting ...the biggest battle I have ever fought. Today I found out I have cancer - untreatable cancer...a very rare cancer that even rare cancer people don't have. Today....I must be strong!

 

urachal adenocarconoma is what it is called. I have a cat scan next week to see how far in the muscle it actually went.
2% of bladder cancers are in the mucscle. 98% are in the lining. Mine of course is rare in the muscle. But in that 2% I fall into another rare category that even those people don't get. They know it is very aggressive and most likely will come back even when they do what they are going to do. I need to be watched like a hawk. It likes to come back in the pelvis even with the bladder gone. At 5 years if I make it that long only 50% of people made it that long. 2years is usually the determining factor of how things go. Radiation and chemo don't work...it doesn't react to it.

so right now..catscan Jan 5 to see how far in muscle and where abouts all the cancer is.
Then we have one of 3 options...

1) partial cystectomy where they remove part of my bladder (top part) and sew it back up. problem is that after they send surrounding tissue to lab it may have cancer in where they cut and so I'll have to get it all removed anyway and more surgeries.
2) complete removal of bladder and replace bladder with a piece of my intestine to make a pouch...but I have to catherize myself to empty the stuff that cant come out because it doesn't contract. It also still produces mucous so that has to be drained as well. there is a high risk with this one. Also high infections with it as well due to the cathetor.
3) complete removal and bypass with intestines. So basically the urine will pass through my intestines into a pouch on my side.

either way I have to have my lymph nodes removed, a complete hysterectomy, and a triangle piece removed. (apparently when you are being created you pee through your belly button. when you are born it is tied off..thus belly button. That tube that was carrying waste usually collapses. Well mine didn't and the cells stayed causing the cancer at the top of my bladder. that tube needs to be removed now)

so that is all I know....I will be doing research in the next couple days. Telling my immediate family has been very hard...especially lil Zach who instantly was in tears. And poor Bella just wants to give me medicine to make me better. If only that was the case sweetheart!

I have pretty much been a robot reciting word for word what was told to me to every person close to me.  Seeing and hearing the reactions has to be the hardest.  Even people who don't pray and believe in God are praying for me...so you know something stronger must be controlling us all.  I don't understand why God has chosen me to fight this battle with 3 kids and a new husband but he did.  I need to find my strength...I need to find my fight.  Today...I will get through the initial shock and tell everyone while I am going through the motions...the days ahead...won't be so easy.