Unexpected - dealing with all of this

It has always been remarked how strong I am and how I am handling all of this so well.

Well ...

Sometimes ....

I just feel like can't 

I wasn't expecting this at all.  I went deep into denial - I had no idea that I was going to be diagnosed with an acute cancer.

I know - everyone tells me how strong I am.

Everyone tells me how I'm the only one that could do this.

Don't get me wrong ... I am so glad that I have had this as opposed to any of my kids or my husband.  But .... really?  LEUKEMIA?  Chemo?

If I talk about the leukemia clinically - where I am physically and what needs to be done - I'm good.  I can have that conversation regularly.

But I just can't have the conversation. When I have any conversation about where I am emotionally - I cry. And hopefully the conversation is not very long.  But I will have my quick cry and then I try to re-direct the conversation so that I can stop the emotional side and any crying that I may be dealing with. 

I don't say this because I need help - I say this because I am finding myself avoiding the emotional conversations. I would rather talk to you clinically about what is going on than emotionally or deal with anything that is actually happening.

Unexpected - follow up appointment

So I was allowed to come home on Thursday, April 23. That was day 37.  I finished my initial induction treatment on day 36 late at night.

So I have been home for almost a week. I am still suffering with awful headaches and some nausea/being sick.  Monday I had my bone marrow biopsy (not as bad as I had thought it would be, but not a ton of fun), and today (Wednesday) I met with Dr. Van Deventer - he is my main doctor for oncology - and I love him.

So this is what I learned today: I need a port installed and that is scheduled for next Thursday, May 7th.  I have to have my port in for at least a couple of days before I use it for chemo and this is the first that we could get it installed.  Therefore, I have my first consolidation chemo treatment on Monday, May 11. I was even given the option of starting on Monday, May 4, but because I didn't have my port installed we had to go with Monday, May 11.

This was a bit much for me.  Dr. Van did say that according to previous treatments I should not wait the 3-4 weeks after induction therapy to do my consolidation therapy. I should do it as soon as I'm ready. Due to me not having a port we pushed out to May 11, but if I had one we would have done it sooner.

We do have a problem with one of the meds that I have been prescribed for chemo.  I will be on ATRA (orally) and Arsenic, or ATO.  You read that right - Arsenic. Not the same as what some wives have used to kill their husbands, etc.... :), but arsenic just the same.  Anyway a problem has been identified with the ATRA. I need it - it's one of the chemo drugs I have to have, but my insurance co-pay makes my ATRA $1200 a month. One thing that could lower the co-pay is if Dr. Van gives me the ATRA during my consolidation therapy - instead of me taking it orally on my own.  If we go that route we probably have to do consolidation at UNC Chapel Hill instead of being able to do this via Waverly Hematology outpatient. That is hard to deal with. I am not driving myself yet. I'm still suffering the effects from the stroke that I had and I can't even do anything on my own at this point - the therapists want me using the walker still. Specifically my right hand is still quite weak and numb. I see the occupational and physical therapists (2 separate people) twice a week. Fortunately, they come to the house and do my appointments here.

So I am technically in a hematologic complete response. My numbers are where they should be, but my marrow is showing that I still have evidence of promyeloctes/blasts, and that my cytogenics are still positive.  Dr. Van is not at all surprised by this and doesn't feel any of this is abnormal based on the fact that I have been diagnosed with APL.

The nice thing is he doesn't feel I need a bone marrow biopsy again until after the 2 cycles of consolidation. He also said that after the 2 cycles of consolidation I would just monitor the cancer with blood tests every 3 months from there. My bone marrow biopsy was not a big deal, but it wasn't fun either.

So if you have stuck with me so far, you have seen - clinically - where I am and what is next. That is where my head needs to be right now. I have been fighting nausea and headaches since I got home and we are trying to get those things under the control. But hearing today that I am not quite where they expected me to be with all my numbers, and that I need to start the next chemotherapy treatments sooner rather than later - that just took more out of me than I thought it would be. I have let it sink in all day, and to be honest, it's just not what I was hoping for today.  Not sure what I was hoping for or expecting, but I don't think this was it.

But I am strong - I got this. I have a few more months of active treatment before I can start to relax. Time to get my head around that.

Unexpected - good news

I have finally had some good news today. I was convinced that I would need another transfusion last night because my numbers were headed down again. But last night my numbers went up all by themselves! Not a lot, but enough to make sure I didn't need a transfusion! They also took me off the 3 times daily sodium pills I was taking. These were the only things making me sick, and now I don't have to take them! That is a huge blessing.

Unexpected - Overwhelmed

I have been very overwhelmed while being in the hospital. It all happened so fast, and it has taken me a while to adjust to not only the leukemia diagnosis, but also the stroke I had. I have not even been able to respond to everyone who has sent me things. I get packages and cards every day. It has simply been amazing. I wanted to try to do a blog just on all the people who have loved me. So I am going to list all the people I can. Please be patient with me.

• Jonathan Howells: I can't believe you sent me the basket you did! Thank you so much.
• Shannon and Jason Johnson, as well as Oasis Next: wow. I look at your cards every day. Shannon you anointing me meant more than you know.
• Pam Tremble: I love the sock monkey. So do my nurses.
• Marsha Daniel: what can I say? You are my Marsha and I don't know what I would do without you.
• Aunt Linda: you have given me so many things. I love that I have gotten to know my aunt so much better these past few years.
• Adryeana and Ann: your present was amazing and so timely!
• Missy French: I love your gift and it is so helpful in my recovery.
• Lindsay Wikoff: I hope you are having fun with Sean. I loved your package. It had so much helpful stuff in it. Your card is the best.
• Nobuko Shiriashi: I can't believe we are still in touch! I have loved your package, especially the pictures of Michael Buble!
• Kris Geer: your package was great! Doctors love your hat! It's great for me to do with the girls.
• Kelli Ditmar: I can't have enough blankets!
• Johanna Holland: what can I say? You are amazing.
• Carol Bennett: the flowers you sent are amazing. Everyone loves them. They are perfect.
• Reclaim: your card was perfectly timed and made me cry.
• Janice LaFleur: your card from the womens bible study was beautiful.
• Toni Carpenter: your card and gift certificate are amazing and timely. So glad I got to know you.
• Bill and Shirley Vis: thank you so much for the card.
• Aunt Joy & Uncle Ed: your card made me cry.
• Cathrin & Kevin Joyner: Thank you for housing Becky and for your card.
• Rebecca Bell: Thank you so much for the card.
• Uncle Jerry: thank you for the card. I had to tell you that I got a purple rosary and I think of you often.
• Carol Anne Mullaly: I can't believe I got a card from you. It was wonderful.
• Jenny McCleary & Family: your visit was so timely. Thank you so much.
• Stacy and Jen: Your visit and the voodoo doll were so timely. Thank you so much.
• Jill Bartruff: What can I say? Thank you for everything.
• Ruth Wynja Gibbons : Thank you so much for the card.
• Lynn McConchie: Hearing from you was so wonderful.
• Uncle Jim & Aunt Deb: Thank you for the card, it was great.
• Aunt Stacy:you were the first to each out to me and it means so much to me.
• Jason and Chloe: thank you so much for your visit and gifts.
• Annalee Timmer: Getting a card from you was so special.
• Lori Tuynman: Thank you so much for all your visits and gifts. They have lifted my spirits more than you know. Seeing everyone from work was wonderful.
• Becky Bolser: stop making me cry.
• Shannon Dempsey: You are the best sister ever. No more words.
• Pat Dempsey: what would I do without you?
• Daren DeVries: I will get out of here some day. 

I am sure I have forgotten someone and will get more to report soon, but I couldn't ignore who has sent me what I already got. Thank you so much.

Unexpected - Go Fund Me

I have been gradually made aware of all the people who have funded my Go Fund Me pages. They mean so much to me. More than you will ever know. Thank you so much.