Unexpected - generally all of this

I haven't updated this in a long time.  Basically this whole journey has been unexpected and to tell the truth - I just haven't known what to say. This is so unknown to me.

I am currently in the break between my two consolidation rounds.  I didn't get much of a break between my infusion round (when I was in the hospital) and my first consolidation round when I was outpatient at Waverly Hematology outpatient.   I had chemo for five and a half weeks every day Monday through Friday with weekends off.  I was beginning to feel like I had chemo ever since St. Patrick's Day when I was diagnosed.

One thing I have discovered is that every cancer is so different.  Most cancers have chemo like once a week, or every couple of weeks, or even once a month.  But cancers of the blood, like I have, need to attack where the blood is made - in the bone marrow. So you have chemo EVERY DAY. I'm the only person there having chemo EVERY DAY. In fact, I'm the only one there every day.  It's uncommon for adults to get leukemia.  Surprise surprise!  It's much more common for children to get leukemia than adults.  You just knew that this woman would get something uncommon.  In fact, out of all the people to get acute leukemia - I got what 5% of people who get leukemia get.  That's right.  That's who freakin' rare I am.

So I finised my first round of consolidation on June 18.  This was also my anniversary - our 21st.  Can't believe we made it that far. Kind of hard to believe.  And to be honest.  This has to be the hardest thing our marriage has ever endured. I don't wish it on anyone.

The last week of chemo was so hard.  The build up of chemo in my system was really starting to take it's toll on me. I was struggling with nausea, and the headaches and bone pain was starting to really get to me.  I was hoping that since chemo had stopped I would start to feel better, but ..........

The build up would take a while to come down. It is now 10 days later and I have yet to see the light at the end of the tunnel.  Headaches are still very strong, I have to keep a strong eye on the nasuea when I eat, I am therefore still loosing a lot of weight (lowest I have ever been ), and the bone pain is AWFUL. I am also having to keep an eye on my blood pressure. Not in the traditional sense.  Mine is too low.  It gets so low and stays low for too long so I have to make sure I get it back up or I will have to go in and get more fluids to help bring it up. I have to stay hydrated for several reasons - blood pressure and my headaches and pain. So basically I should always be drinking - and it should not be caffeinated because caffeine can be dehydrating.

But I am finding that a lot of the things I liked to drink before taste much different.  I used to drink milk like it was going out of style.  I can't drink it at all now.  So much so that I am defficient in D now. I never was before. I am also defficient in Folic Acid. Not to mention B12. I am going to need a lesson in Vitamin Defficieny here soon.

The other thing I am really struggling with is the bone pain.  It's like nothing I have ever experienced. My bones actually feel like they are breaking at times.  The pain is unbelievable and the pain medicine isn't touchig it. It used to be that keeping moving would help it, but I am finding that  I am more unsure of my movements right now and my muscles are very week. Going up and down the stairs is the hardest thing I do.  Doing it more than once is so difficult. I keep waiting for this to pass and get to the point where I'm feeling better and I'm fearing that It was be feeling better just as I start my second round of consolidation.

Not all is bad. I'm glad to be on a break. My girls just left with my mom to go to Florida to visit my sister.  I am upset to have to miss this trip.  I wish I could go, but I'm not comfortable being away from the doctors just at this point. My mother was gracious enough to take the girls with her.  This gives them some time off to enjoy before they have to go right into seventh grade!  They are getting so big. And this will give me some time with my son.  It's always different spending time with just one of them. And the girls will enjoy time with their cousins. I can't wait to see my sister again.  I don't know what I would do without her.

So I don't mean for this to sound depressing.  But I wanted to explain why I don't put many updates out there and havent updated my blog much either. I'm just trying to get by these days and it's taking a lot out of me.  But please don't hesitate to reach out to me.  I'm trying to reach out to everyone.

Thanks.