Catching Up

 I have been writing and making notes since I was diagnosed, I just wasn't ready to talk about it until now.  Here are the most current entries to get everyone caught up.    

I now have an official diagnoses: Acute lymphoblastic leukemia (ALL) with the Philadelphia chromosome. 

It all started because I was doing some grocery shopping at Wal-Mart and I started to feel sick so I headed to the check out.  All of a sudden, I couldn't breathe, I couldn't see, and then I woke up looking up at the ceiling.  

This was the first time in my life that I have ever passed out.  It left me with a nice goose egg on the back of my head. 

 

My husband took me to the doctor to have it checked out.  My doctor was concerened I might have blood clots so I was sent to the ER who did a CT scan.  It was confirmed that I had two bloods in my lungs. 

They went on to try to find out why I have the clots, and to make an extremnily long day and stroy short, they found the leukemia. 

I was put on an ambulance and taken two hours from home to the nearest leukemia treatment center.  

Have you ever wanted to know your number? You know, how you stack up to the rest of society? I now know. There are 4,000 new cases of ALL every year (most of those being kids as ALL is usually a childhood cancer, only 1/3 of the 4,000 are adults) and of those 4,000 only 30% have the Philadelphia chromosome and of the 30% that have the Philadelphia chromosome, the number of people who have the cyst on their brain is unknown. I am told I am the first one that the doctors at the hospital has encounter. I know I'm special (ha), but this is taking it too far!

The term "Acute" means very fast growing and without treatment, it grows very fast and kills swiftly. Passing out and going to the doctor to get checked saved my life. I have been told that mine was caught super early. Leukemia has no "stages" as some other cancers do.

Will be getting my first spinal tap soon. This will determine if there are cancer cells in my central nervous system and the fluid surrounding my brain. We know there are no cells in my brain, but there may be some around my brain. Hoping it was caught so early, that the cells have not had time to get into my CNS and cerebral fluid.

Here are some links, but please don't freak out when you see the statics. They aren't good. You have to remember that ALL attacks with vengeance and a lot of this data is based on patients who were untreated for a significant about of time. The long term survival rate is about 50-60%.

Unfortunately, this means that of the 3,999 other cases that will be diagnosed this year, their survival rate dropped by one, as I WILL be one of the 50-60% that gets through this. Steven and Jared can't get rid of me this easily.

http://en.wikipedia.org/wiki/Acute_lymphoblastic_leukemia

http://marrow.org/Patient/Disease_and_Treatment/About_Your_Disease/ALL/Acute_Lymphoblastic_Leukemia_%28ALL%29.aspx

http://en.wikipedia.org/wiki/Philadelphia_chromosome

 

Got some more news. 30% of people have something called the Philadelphia chromosome. People with this chromosome have to have bone marrow transplants.

I have the chromosome. They have to get me into remission and then they will do the bone marrow transplant.

The issue right now is the cyst on my brain. They need to know if meds can go through the cyst. If it can't, I will have to have neurosurgery to have the cyst corrected. They are worried meds won't cross it and they don't want me to relapse at that one spot. Will go this afternoon and test that. The cyst that is on my brain is no big deal. I was probably born with it and, had this not happened, I would have never know it was there.

The best bet for a donor will be an unrelated donor. The best donor is usually a sibling and since I don't have one, an unrelated is the next best option, with a parent or child last.

A very special thank you to everyone who has sent me flowers. Unfortunately, I am not allowed to have live flowers in my room. I should have said something, but you guys know me, I don't think about people buying me stuff.

Now, as far as the blood marrow goes, there are donor centers all across the US that you can go into and have your bone marrow tested. You never know, you might be able to save someone's life. There is someone out there right now that went to one of the centers and got tested that just might save mine.

I will keep posting updates and I know them. It's kind of a hurry up and wait situation right now.

 

  

Today has been an exhausting today. Had three chemo treatments today, a spinal tap, and two CT scans.

I already mentioned the cyst that is on brain. The two CT scans today were to find out how much that cyst is going to play into my recovery. They are trying to determine if the Chemo is going to be able to get through the cyst and get treated.

The CT scan proved today that the chemo can NOT get through the cyst. So, what does this mean? Does this mean that it will be only one spot to not get treated? Could this mean I could relapse with this spot? Does it mean since Chemo can't get through it, can the Leukemia get through it? These are answers we just don't know yet. As soon as they know how this cyst could or could not affect my treatment and remission, then they will know how to proceed with that part of the puzzle.

We will have the test results from the spinal tomorrow. They did the spinal to see if there are Leukemia cells in my CSF (cerebral spinal fluid). http://www.nlm.nih.gov/medlineplus/ency/article/003428.htm You know you wanted an education, LOL!!!

 

 

So far, the only update is that I made the decision to withdraw from school (for now). Its breaking my heart (since I am SO close) but its the right thing to do. I am leaving in good standing so I will be able to pick up where I left off and get my last 6 classes done and get my degree. The school was very understanding and made it painless.

 

Chemo round two. Blood sugar is too high, getting round of insulin. Blood platelets are low, getting round of platelets and two rounds of blood. Chemo round three is scheduled for this afternoon with a spinal tap. The chemo will be infused directly into my spine. Test to check brain cyst also scheduled for today.

It's going to be a long, tiresome day.  I will post updates as I know more.
 

 

 My biggest issue right now is modesty has been thrown out the window and I have to get used to people helping me. I'm used to being the caregiver and if I need/want something I get it myself.

Now, I need help showering and even walking (as I have a pick line and more tubes than Steven's aquarium and I'm still horrified at the chance of blacking out again) and I have to ask if I want or need anything.

More later as I have more.