Good Weekend

       Seems like the weekend has flown by!

 Yesterday I did a ton of laundry and tried to get things somewhat caught up around here. And it was also my last day on the Dex (steroid). It didn't seem to give me as much energy as it has in the past but it sure did give me horrible acid reflux. It has everytime I've been on it and usually goes away within a few days of going off of it.

We have some more stuff to get done around the house today and we are planning on taking the kids to see Santa. I've been nervous about going out around the crowds and all the germs but this is something that we have done every year (with the exception of last year because of me being in the hospital). And this year we're going to check him out at Bass Pro in East Peoria - it's supposed to be pretty nice there.

My next doctors appointment is on Tuesday. And Wednesday Aly has her first Christmas program with school - it sounds like it will be pretty cute and I'm excited to see it.

The kids are loving our elf, Buddy. This morning they woke up and found out he had been up to no good last night and even played a trick on them (I found this idea on Pinterest and thought it was kinda cute). They loved it!!

It's hard to believe Christmas is next weekend!

I forgot to mention...

      I started the steroid, Dexamethasone back up this last Tuesday for five days. I don't know if my body is just starting to adjust to it or what but I definitely haven't had the "climbling the ceiling" feeling the last two times I've been on it. My sleeping hasn't been too bad, really. As I'm awake at almost 4 A.M. posting a blog. But I'm blaming that mostly on my Neuropathy in my feet bothering me so much that I had a hard time sleeping.

So what did I do? I ordered Christmas cards!

Yesterday afternoon I had Aly put on a pretty snow "woman" tutu/pant set and told her I wanted to take her picture. Her reply? Yayyy!! Okay, that was easy.

So while Connor napped I took Aly's picture (or 20 because I'm so picky) in front of the tree. Then Connor woke up and I changed him into his cute snowman shirt and he was okay with the whole deal until he got up from in front of the tree and discovered a piece of garlic bread I had left out from lunch on the counter.

We had spaghetti and garlic bread for dinner the night before and I kid you not, both kids would seriously eat that probably every.single.day if I would let them. So they had it for leftovers for lunch today. : )

So, what did I do? I bribed my 2 1/2 year old son to sit down for a "few" more pictures with that last piece of garlic bread. Hey, it worked!

I tried and tried however to get a good picture of the kids together but yeah, didn't happen. Aly insisted on holding Connor's hand and he would just laugh and look at her. But those there are the "real" memories. That seems to be what actually takes place in our house every day and I just love it.

Another thing from before we went to bed tonight, the kids were brushing their teeth and putting on pajama's and Connor bumped his head on our table in the living room. Without even saying a word, Aly just walked up to him and wrapped her arm around him and kissed his forehead. I about melted. She is such an amazing big sister to him and I love how crazy he is about her. Hopefully it will always stay this way.


Before I go, here are the pictures I'll be using on our cards. I think they turned out pretty cute! : )

  

Time for an update

 I've been slacking big time lately with my blog. It just seems like days are just flying by. Christmas is right around the corner and I still feel like I have a million things to get done.

The kids and I have been doing some Christmas crafts around here and we were working on one earlier but both kids were getting pretty cranky so we'll finish it later. I'll post after it's done. Pretty cute though!

I've had a good couple of appointments since my last post. My counts are staying about the same, not the best but not too low.

This last Tuesday I had a full day. My day started out at 7:30 for bloodwork, 8:30 oncology appointment, 9-ish chemo, then Justin and I went for lunch, and I had a followup with my radiation oncologist at Methodist at 11:30 and then my 16th spinal tap was scheduled for 12:30.

Everything went good at Dr. Vukov's office. My followup with Dr. Carpenter went well also. But he's concerned over the issue with my left eye and having the "floater". He made a referral for me to go see Dr. Catherine Cuite because he's worried I might have a detached retina from the radiation. I tried my best to explain to him how it is to me and then I came across this picture online and it is a pretty good example of what I'm seeing. It's especially visibile while focusing on bright and solid colors.

After that appointment I went up to radiology. I got there and did the routine pregnancy test which must be done before proceeding. Then the nurse asked if I had a preference on which doctor did the procedure and I told her Dr. Chee. She said I lucked out and he was there but in another procedure but could most likely do mine if I waited a little longer. So, I did - about 30 minutes longer and Cliff from Radiology came and got me to go back. I'm very fond of Cliff, he's been in for every spinal tap except for one and he's always been so kind and calming. One reason I like Dr. Chee so much is that he's very personable, he talks about his kids and asks about ours and so on. And another reason is he's the fastest of the four doctors I've had there but he really tries to make sure I'm numb before proceeding. He will numb me up with lidocaine and rub the spot for a few minutes and then numb it some more. And then for the procedure itself he has me lay with my body a little tilted and always goes in between the L4/L5 vertabrae. From there he has to take the bigger needle and puncture the fluid filled sac to get to the spinal fluid, from there he removes the fluid and then inserts the chemo Methotrexate. The whole procedure doesn't take too long but the worst part of the whole thing is trying to get through all my built up scar tissue. Every doctor that has done this on me has that issue. And then I'm off to recovery for an hour and then discharged.

Tuesday is always our super busy day, especially when I have all these things crammed in and Aly also has dance that night. So since I had my spinal I had to come home and rest and Justin took Aly to dance (and Connor went to bed early) and it was also pajama night/watch week. But I know from previous experiences, if I don't go lay right back down I will have a horrible headache the next day (that usually will last about a week). So I stayed home and took it easy and didn't get a headache. 

The weather was decent this last Sunday so I went to Bloomington and took a pretty Christmas wreath for my Mom's grave. It was so hard. As soon as I turned on the road to get to the cemetary I lost it. Justin asked if I wanted him to go with but I just needed to do this by myself. And I knew I was going to have a long week and didn't know if I would be able to make it back in before Christmas. It was so hard. Not having her here for Christmas is definitely not going to be easy, I know that. But I just keep reminding myself that she's not in pain anymore and is in a better place. But I miss her so much.

I wish we would get some snow. Yes, I really did just say that. We've had a ton of rain lately it seems and here we are right before Christmas with no snow. I've never really cared too much for snow but since we've had kids and just how excited they get over it, I like it (just not 5 feet of it!). Last week we had a tiny bit come down and I knew Connor was already asleep in his room but Aly was awake in hers so I ran in and got her and showed her it on our deck and she was just in heaven! Her eyes just lit up! And it was all gone by the next afternoon.
      
Well, other than all that not too much has been going on. Just busy around here like usual. Trying to get the rest of the Christmas stuff done. It's going to be here very soon!


Hope everyone is having a Happy December!




Kim

The Evolution of Leukemia Treatment

  I just came across this and thought I would post it. To me, it's pretty interesting.

Tired.

       I'm so tired. Actually, that doesn't even begin to come close to how I'm feeling.

Before starting the radiation Dr. V told me to expect exhaustion about a week or so after I was done. Well, he was right (I never doubted him). I have no energy to do anything. I've been trying to take it easy but it's just so hard have two little kids.

Today is the first day of our Advent calendar so I forced myself to get everything done for it (all the papers cut out, written out, and put into the pockets) but I honestly didn't even feel like doing something as simple as that. I plan on starting it tonight with the kids.

My appointment with LH went well Tuesday. My white count is down to 1.59 but my platelets and hemoglobin are okay. I started the chemo pills back up (6 MP and oral Methotrexate) back up. And I'm still scheduled to have my next spinal on December 13th, she had talked to Dr. V about possibly delaying it one week because we know how much my counts drop with it, but she talked to him and he wants me to go ahead and stick with that day. I'm okay with that, and if my counts do drop a lot - which I expect - than I'll have enough time to get in for blood or platelets before Christmas. I'm so excited for Christmas this year, so I'm hoping and praying that everything works out good.

All in all it was a good appointment. Another thing, I thought I would only be having one more year for maintenance therapy but I was wrong, I'll have two more years. Whatever keeps me in remission though. : )

I seriously cannot remember the last time I felt this tired. I'm waiting for Justin to get home from work and then we are doing a simple dinner. Very simple.

I will go back in next week to have blood drawn to check my counts and then my next appointment is on the 13th, I'll be starting back on Vincristine that day also.


Kim

A few more pictures

     Every week during radiation they had to take new x-rays. These pictures were taken during my first week of treatment but I thought they were pretty interesting. These were taken with Justin's cell phone so I'm sorry if the quality isn't the best.

All over the place post...

       Things around here have been great. I'm feeling pretty good. Tired and busy, but good and grateful.

We have Comcast for our internet and home phone and have recently been having issues with it. We couldn't figure out for anything what was causing the problem because Comcast said it wasn't on their end and it wasn't on ours and because of our busy days we couldn't have them out during the week and were finally able to have them out this last Saturday. The guy came out and figured out right away what the problem was - he went into our backyard and I guess the connector box that is right between our house and our neighbors, had been disconnected. I guess a neighbor had recently had their service turned off and instead ours was turned off by mistake. So we went a week and a half without service! I was so irritated, but atleast they were able to get it fixed and our account is being credited for that time we went without service.

I haven't posted since my last appointment. My white count had gone up from 0.53 to 7.51 in ONE week. Thank you very much, Neulasta shot. I may just be asking for another one right before Christmas - it will raise my white count and lasts for fourteen days.

I have an appointment tomorrow with the NP Laura Hertz. I'm curious to see what my counts are right now.

I am DONE with the brain radiation. SOOO glad. That was tough, and going in there everyday was so hard. Walking into that hospital brings back so many memories, from days when my Mom was there at different times, to my hospitalization last December, all my procedures, and so on. And then just walking in there everyday.

Right at the end of radiation I started to lose my hair. I lost it all in the exact spots I had the radiation. But then some spots still had bits and pieces of hair. It looked weird. So one night I had Justin shave it and this is by far the shortest it's ever been in the three times I've lost it in the last year. My head is officially bald - but then tonight we noticed that in one spot on the back of my head it was starting to come back in a tiny bit. I was joking around with Justin and told him that it actually looked like a mustache on the back of my head, so I had him shave that part again. And, once again this just proves how awesome he is - the Sunday night we shaved my head he did his also. He's shaved his head each time I've lost my hair. He told he thought I looked beautiful and very brave (as I was crying and looking in the mirror).   Now we just will have to wait and see if my hair comes back in - with brain radiation there is the risk of hair never coming back in or if it does it might just come in in patches. So time will tell. And for now, I'm wearing a winter hat when I go to bed at night. My head gets so cold at night since we sleep with fans on - Justin thinks it looks cute but hey, it works. : ) 

Speaking of hats, I'm looking for a red hat and scarf. So far I haven't had much luck but I'm still looking so if anyone sees one somewhere please let me know. Thanks!

I'm not really feeling too bad. Nothing a thirty minute nap during the day won't fix. But, I am having an issue with my left eye. I finished radiation last Tuesday (12 treatments total) and didn't have this until my last treatment. I can see something out of my left eye and it looks like a small gray line that is folded (it's hard to explain). I can only see it when I really focus on something and can see it in great detail when my eyes are looking straight forward and as soon as I turn my eye it goes off to the side. I'm hoping this will go away and soon, it's more annoying that anything. At first I thought it might just be something on my contact but it's still there when I have my contacts out. I plan on bringing it up tomorrow at my appointment.

We had a great Thanksgiving! We all ate so much and just had a great day! : )

Yesterday we put up our Christmas tree and decorations. I'm so excited for Christmas this year. The kids are really getting into the spirit and I'm so happy! We brought out Buddy the Elf (Elf on the Shelf) on Thanksgiving and the kids love hunting him down every morning. It's almost time to start our Advent calendar and I'm just so excited!!  

I think I'm going to do majority of our Christmas shopping online this year, that way I can avoid the crowds and all the germs. I'm even more paranoid about germs now, but I have to be.

I need to finish up the kids' Christmas lists for a few people, if you haven't heard from me yet, I'm sorry. I'll get it done and sent sometime tomorrow. And we also have to "mail" Aly's letter to Santa tomorrow. It's been such a long year and I'm so excited for Christmas and the New Year.


Off to bed! Goodnight.