May 2013 Update

Okay, I know its been a long time since my last post.  I'm thinking again that I might start posting more often.  I've been doing really well lately.  Dr. Richman is working on getting me off more of my pills.  I started at roughly 20 pills a day and I am down to 6.  I'm still not back to work but I am helping out a lot at my daughters volleyball club.  The club is actually owned by my sister-in-law and brother-in-law, Shannon and Irv.  It has been an amazing experience for Hailey and one that I know she is going to continue.  I also was "team mom" for this season....talk about a lot of fun.  I still have my days that I "over do it".  But they are getting farther apart which is nice.  It means I am getting stronger!!!

Sunset Volleyball Club

13 Black

Chemotherapy

I have one more dose of Busulfan left and then I'm moving onto Cyclophosphamide, Mesna, Thymoglobulin and Tacrolimus for the next three days.  (Days -3, -2 and -1) Cyclophosphamide is another chemotherapy to kill off all my cells before the transplant (day 0).  The Mesna is used so I don't get any harmful effects in my bladder due to the chemo.  Thymoglobulin and Tacrolimus are medicines to help prevent rejection after the transplant.  I will also be taking Methotrexate on day +1, +3, +6 and day +11, this drug is used to help prevent Graft vs. Hose Disease. 



This whole experience is really taking a toll on me emotionally.  I can't see my kids which is very hard for me.  The girls text me a lot especially Hailey.  I am missing out on Hailey's birthday party today because we didn't think it would be a good idea to have me around a bunch of kids right before my transplant.  It will be nice because Taylor is going to help Josh with the party. Taylor promised to take tons of pictures for me.  I can't wait to see them.

I'm actually going to see about meeting with Doctor about getting my anti-depression and anti-anxiety meds increased.  I'm tired of crying all the time.  I know that this is not an easy process and there is a lot of fighting that I need to do but I need a little more help to keep it under control.  I miss my family and home so much.  This is great being in such a big hospital room but its hard at the same time. 

I'm gonna go for now and see if I can catch the kids and Josh on Skype.  We bought a webcam for my laptop so we can see each other.  I love you all very much!!!

Back at the hospital

Well I'm back in the hospital for my transplant. I was was checked in yesterday after I was finished with getting a  PICC line put in. It was not the best experience because I have weird blood vanes.  My regular chest port is on my left side so they wanted to use my right arm for my PICC line. Well since I have weird vanes they were not able to thread the cord to the correct part of my body so it only went into the mid part of my chest.  So we will use the PICC line for just the stem cells and we are using my chest port access for everything else.

I'm on day 2 of chemo and have 6 days left. Then on March 29th, I will do the actual transplant.  I was fortunate to find out my donor is a 10 out of 10 match, 50 year old female. Thats all they will tell me about her for up to a year. My hospital room is amazing, it is huge. I have a closet and a dresser for my clothes. I also have table and three chairs, plus a recliner bed for visitors.  Not that they really want me having too many overnight visitors but once in a while is okay.

Monday the 21st was Hailey's birthday so it was really nice I didn't have to go into the hospital until after her birthday.  Dad is letting her have a slumber party this weekend which I'm bummed I'm going to miss.  We couldn't take the chance of me getting sick before I came in.   Taylor is in charge of taking pictures so I will get some uploaded after the party.

Well I'm gonna go and relax for a while, take a shower and wait for Josh to get here.  I am going to do my best at updating my blog on a more daily basis, so please feel free to leave comments and I will comment back.

xoxo

10 out of 10 Match

We got GREAT news this last Thursday...They have found me a bone marrow donor. The donor is a 10 out of 10 match!!! We don't know much more than that right now but we will find out more on Tuesday when we meet with the transplant doctor. My Oncologist did say that it could be within the next few weeks, so I shouldn't need to do another consolidation treatment. I will need to do one more bone marrow biopsy before the transplant to be 100% certain the cancer is still gone!!!

I have to admit I wasn't really sure how to react when my oncologist told me the good news. Don't get me wrong, I am so happy but at the same time I am pretty scared. I actually just requested some more learning material from NMDP or National Marrow Donor Program. The NMDP has support resources for patients, caregivers and families.

One of the guidelines of the transplant is that I can't know who my donor is for one year. Also my donor will not know who I am. At the one year mark either party can request to get the others information. I am so greatful that there are people who are willing to be donors. Thank you so much to the man or woman who is a perfect match to me, you are truly a lifesaver.

I will post more on Tuesday after I meet with the transplant doctor.

xoxoxo

Going home

Just finished up my first five day consolidation treatment. It actually hasn't been too bad. The nausea still comes and goes but nothing I can't deal with! I will be back in about 30 days for another consolidation treatment and as long as my blood work stays in line I won't need to get another bone marrow biopsy.

I'm still waiting to be matched up with a bone marrow donor, so hopefully I hear something soon. If a donor is found we will move straight to a transplant and no more consolidation treatments. I'm really nervous about the transplant but I know it needs to be done. I could be in the hospital for a minimum of 30 days which I don't look forward too. It's really hard being away from the family that long.

Well enough about that for now. I'm gonna go home and enjoy my family!!!!

Xoxoxo