Unexpected - what is leukemia?

I found an excellent video describing leukemia and why it is so insidious.  Please view it to get a better understanding of this cancer and how it works.

This video will give all of you a better understanding of how this cancer starts and why it is different than other cancers.  It is a cancer of the blood.  There is no tumor - it starts in the bone marrow and in the past 60 years there have been a ton of advances in the research for this cancer.

Unexpected - treatment schedule

I just realized that most people don't know what my treatment schedule is.  Seems I have been living within my own mind on this one. So here it is and I can refer people to my blog.  :)

I was diagnosed on3/17/15 with Acute Promyelocytic Leukemia in the ER. Needless to say that Saint Patricks day is no longer lucky for this Irish Girl! I was immediately admitted to UNC Chapel Hill and started the induction therapy part of my treatment.  It was a 36 day cycle in the hospital and I was released on day 37. On a side note - it was awful - we'll just leave it at that.  But at your lowest you find out just how many friends and people who love you you truly have.

I had to have a port installed. The port is a Bard Power Port: Bard Information. A port is something that is implanted under the skin and allows clinicians to access larger veins for just about anything - such as blood work, CT or CECT scans, chemo, etc...  It is in place instead of having to use IVs, which we all know I am now a horrible stick. It takes a conscious sedation procedure so that I can react if need be. It was not the most pleasant procedure, but it wasn't awful either in consideration of all the surgeries and procedures I have had done in the past.  Especially when you consider that I have this in place of the fact that I won't have to have IVs as a result. We have named my port Rupert and it is still a "baby port" and can occassionlly give me pain, etc... If I had the port installed earlier I would have started my chemo earlier.  My wonderful doctor was ready to start it up to a week after I left the hospital, but I needed the port installed and it wasn't there.  So we had to wait for the port and so the chemo started 2 weeks after I left the hospital.

Right before the port was installed I had a bone marrow biopsy after leaving the hospital to see the how the induction therapy had done. It was not super fun either, but not awful, and the results were amazing.  According to my doctor 98% of the people with my results never saw APL again.  So I am amazingly grateful.  The chromosomes they were looking for for my APL were undetectable.  Thankk you God.

Back to Chemo. 2 weeks after leaving the hospital I was able to start my first consolidation treatment and we were able to arrange having it at Waverly Hematology with Dr. Suzanne Kirby who is familiar with my oncologist at UNC Chapel Hill - Dr. Hank Van Deventer. This was a huge answer to prayer. My first consolidation treatment is 28 Days - Monday through Friday with the weekends off. A little confusing but I hope you are following me. I am taking ATO (also known as Arsenic - no comments please) through IV at Waverly for about 2 hours every day as well as ATRA by mouth twice a day. I am allowed to take the weekends off.  The ATO comes through my port. The 28 days of treatment comes out to be about 5 weeks.  I am about 2 weeks in so far.  So far my numbers have not been awful. We will see how it goes.  One of the side effects of both drugs is headaches.  Seriously. I have no words. Another side effect is dry eye. My make up hates me.  Also chapped lips.  This is Pam here. Ugh.

After the first consolidation round we will do the second consolidation round.  It is also 28 days like the first one, but the drugs follow a different regimen.  I will be doing the ATO by IV Monday through Friday as before, but the ATRA will be Monday through Friday on weeks 1, 3, and 5. I will also be doing this consolidation round at Waverly Hematology.

Currently during my consolidation rounds I have EKGs on Mondays.  This is because some of the side effects effect my heart and they want to check to make sure my heart is OK.  I also have blood work on Monday, Wednesday and Friday to make sure I am taking the drugs well.  They can do the blood work through my port.

After both consolidation treatments the current plan is to do another bone marrow biopsy to check how treatment is going. All expectations are that it should be fine.  Then I will start what is called the Maintenance Phase.  The maintenance phase is all oral and can be done at home and will be based on 3 month blood tests. I should be at a point where I can recover enough from both the chemo and my previous stroke in the hospital that I can hopefully get to a point where I can get back to work and participate in the maintenance phase while being at home and at work. I hope that makes sense.  The maintenance phase will be anywhere from 1-2 years and will be based on the blood work.

So this has had a lot of information in it, but I hope it answers a lot of your questions.  I think it has all of the information I have in it at the moment, but if there is not anything in it that you still have questions on please let me know. I would be happy to answer them.

Thanks.

Unexpected - Henna Crowns

I have had several people suggest that I need to have a Henna Crown done.  I whole heartedly agree! I would LOVE to have a Henna Crown! If you don't know what I'm talking about - this is what they look like:

Pure Henna has healing properties in it and can be great for those healing from chemo. Today I did some research and found a fantastic person who has done them with pure Henna powder, aromatherapy, essential oils, and lemon juice.  After my doc gives me the go ahead I believe I may have a little Henna party for those that would like to do this with me (because I have had several express an interest in this with me). Let me know!

Unexpected - Great Cards

I had a friend send me this link a while back and it made me howl. Then I saw something on it on GMA this morning so I just had to blog about it today.  Please support this woman, Emily McDowell, because SHE SO GETS IT!  Here is a link to her studio:  Emily McDowell Studios and here are some pictures:

You know me and my humor.  This is right up my alley.

Unexpected - Overcomer

Several people have sent this to me and I have resisted acknowledging it, much less posting it. And yet - here it is.

Sigh. One can only hope.

Unexpected - test results

I got an email today from the doctor in charge of my oncology:

Ms Devries,Your PML/RARA transcript level was undetectable on your last bone marrow biopsy. This is the most sensitive test used to detect your leukemia. We will continue to monitor this transcript as you continue with treatment - and, yes, we will use a peripheral blood test and not a bone marrow biopsy. However, patients that get to this point and finish treatment have 98% or better chance for cure. 
Your B12 level was 520. This is more than acceptable. 
I know there is still a way to go - but you have done very well. 
Page me with questions (919-216-1215). We will start your treatment on 5/11.
HvD

Is that not awesome???