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.

Feeling a little better...

  


       My fever finally broke late Friday early Saturday morning. I felt pretty decent yesterday and felt like I had a little bit of energy back. Until today. Kids slept in a little so we did also. Now the kids are eating lunch while Justin mows and hangs up Christmas lights (before it gets really cold) and I feel like I could seriously crash - go back to bed and sleep, sleep, sleep.


      I had a long and hard cry last night. I've just had many emotions and feelings running through  my mind lately. From the radiation treatments and it just seems the farther into treatment I get the more anxiety I have, missing my Mom so much and knowing the kids won't know her growing up - especially Connor, to my seriously neverending medical bills,  and just so much more.

       I just feel drained. I was told to expect fatigue and with my white blood count still being low I'm just exhausted.


    I plan on putting the kids down for rest time in a bit and taking a little rest myself.


   Kim

Update

          This post is going to be short. I'm pretty sick right now and hardly have any energy to do anything.

Monday night I started feeling pretty sick. Nauseated and spiked a temp. It ranged between 99.7 and 101.2. From past experiences, I know a fever while on chemo is not good.

Justin called Dr. Vukov's and Dr. Carpenter's and the radiation was put on hold yesterday until I went in for bloodwork and my weekly appointment.

Well, my counts are still pretty bad. Even worse than last week. That is one big reason I'm feeling so crummy.

White Blood Cells
0.53 (normal range is 4.26 - 9.66)

Red Blood Cells
2.76 (normal range is 4.20 - 6.02)

Hemoglobin
9.5 (normal range is 11.5 - 16.0)

Platelets
89 (normal range is 133- 382)


Between the brain radiation and my extremely low white count I am completely exhausted. Actually, exhausted is an understatement.

I went in yesterday and was put on an antibiotic (Ciprofloxacin) to get this fever gone but they don't think I actually have an infection going on anywhere. They think that since I'm having a fever it's from my body trying to fight off anything and everything that is trying to invade my body right now since I basically have zilch for infection fighters.

I also have no appetite for anything. Nothing sounds good. I'm trying to force myself to eat.

Same thing happened when I was in the hospital from Dec. to Jan. and I lost my appetite and ended up losing 48 lbs. in one months time.

I've pretty much been sequestering myself to our bedroom to rest as much as possible and to avoid germs (pretty tough with a 2 year old and a 4 year old running around)! But Justin's been fantastic with letting me rest as much as possible.

I was also given a shot of Neulasta in my stomach to hopefully boost my white blood cells. Hoping it works!!


Okay, longer than I planned but I wanted to give everyone an update.


4 radiation treatments down, 8 more to go!

Second Treatment

   I had my second treatment today and I was in and out within 30 minutes. The radiation itself only takes about 30 seconds on each side. And I seriously think the worst part of the whole process is wearing that mask.

All went well with it. But from my first treatment yesterday I was just exhausted from the headache I had afterwards. I talked to the radiology techs and they told me that the headache can happen since they are focusing solely on my head/brain. They said that the radiation can cause my brain to swell and cause it to rub against my skull creating the headache. The headache I had after yesterday's treatment was awful. I felt intense pain from temple to temple and then towards the end of the headache I felt like I was having pain at the back of my head. It was just awful. I took some medicine and went to bed early and Justin took care of the kids and put them to bed. Around 8 A.M. I noticed it was starting to go away...

And then I had treatment at 2 P.M. and it was back very soon after. So I called Justin's parents and asked if they minded me keeping the kids over there a bit longer and I came home and took it easy. It's now almost midnight and I still have the headache. It's not as severe as the one I had last night.

But they told me that especially since I have a history of seizures that I need to watch these headaches extra close.

I'll post more later with more details on how my first day went, my appointment with Dr. Carpenter, and a few more pictures from my first treatment. But right now I'm going to bed and hoping this headache goes away.


Kim

First Treatment

    All went fine with my first treatment of radiation today. I'm completely exhausted though and have a terrible headache so I'm going to bed but I will post more tomorrow. My second treatment is scheduled for 2 o'clock tomorrow afternoon.


   Goodnight.


    Kim

2 P.M.

   That's what time I have my appointment at Methodist. I'm so nervous...


   Today it's cold and dreary out - I've spent most of the morning snuggling with the kids and trying to keep my mind off this afternoon.

   I'll post again tonight.

Appointment and Mask

     I went in yesterday and had my normal appointment and saw the NP, Laura. My appointment went well but my counts weren't the best. My white count was 0.71 and my platelets were 141. As she put it, my counts are in the gutter (due to my most recent spinal tap and the oral chemo pills I'm taking at home). Because of my white count being low I just need to be extra cautious since I don't have any infection fighters right now, so pretty much wherever I go that is public I have to wear a mask.

They had no problems whatsoever getting good blood flow from my port. I'm so glad! They drew blood and then flushed it with heparin and when the NP went to look at it it wasn't sticking up near as much as it had been. But I still just need to keep a close eye on it.

I knew it was about time to start the radiation therapy. So after my appointment we left there and then Justin had a doctors appointment himself and then we went to Methodist. I had a cat scan done and then had the mask made for the therapy. This morning the radiation oncologist, Dr. Carpenter, reviewed the images and then gave me the go ahead to start tomorrow (they weren't sure they were going to be able to proceed with starting this week because of my low counts). So I go in tomorrow at 2 o'clock. I'll have a total of 12 sessions. 2 days this week, M-F next week, and then M-F the following. Each session is only supposed to last about 15 minutes.

But I'm a nervous wreck!  The mask molding/fitting was terrifying. It is put on wet and dries to your face within a matter of minutes, but it just gets tighter and tighter. At one point of the whole process I could feel my heart pounding through my face - I felt so scared and just wanted to throw my arms up and be done. But I didn't. I know this is just one more thing I need to do. At one point, the radiation tech came over the speaker to talk to me and ask me to turn my head a little to the left and I tried but there was just no way - the mask was dry and rock hard and also bolted to the table. Talk about feeling scared!!

I wanted to have some pictures for this blog so I asked Justin to take some for me.

So here you go. The "pillow" I'm laying on was specially molded for my head also. If you want to see larger pictures, you can click on them and they will enlarge.

A radiation tech, Bob, taking pictures also for their records. He was so nice and made the entire process much easier!

All marked and ready for Thursday.

Happy Halloween!

       Aly had her Halloween party and parade and it was beyond adorable!

Afterwards we did lunch and then we went and watched the young Marine, Jordan Bastean, return to Pekin after losing his life fighting in the war a little over a week ago. It was so sad and my heart goes out to his family and friends during this difficult time.

I was called this morning from a nurse about the issues with my port. They wanted me to go in and have it checked out today so I went in and saw a NP named Judy and she said she thinks the line has just moved from all the scar tissue I have built up from all the procedures I've had done (2 picc lines, liver biopsy, having the port placed, etc.) and said she thinks it's fine but she wants for me to have it checked out more tomorrow (at my normal scheduled appointment) by another NP and to see how it does with blood flow. So we'll see...I'm hoping it's fine. I'm so used now to having my port accessed and used for everything that when it was mentioned about me possibly having to have my blood drawn peripherally I seriously cringed.

The kids went up to their Great Grandparents tonight for trick or treating and had a great time spending that time with everyone. And afterwards I took them to do some more trick or treating and then brought them home. We brushed their teeth extra good from all that candy they had tonight and they crashed! Long day!

I'm exhausted also. So I'm off to bed. Hoping all looks good tomorrow with my port and my counts!!

Port issues...

     I haven't posted in a few days. I've had a pretty low key week which has been nice.

Until last night. I stayed up late and watched a movie in bed and then after it was over I got ready to go to sleep. I got nice and comfortable and then scratched my neck and noticed the "line" from my dual power port in my chest seemed like it was bunched up (I don't know the medical term for this so I just call it the line, it's what connects my port to my jugular vein). So much for starting to doze off, I went into full panic mode and woke Justin up and he said he could definitely tell a difference in it also. I could literally wrap my fingers around the line where it felt like it was bunched up. I wasn't having any pain with it but still very concerned, so I called the after hours line and talked to Dr. Shawn Seibert. It was late (2 A.M.) and I feel bad calling and waking him up (he was the on call doctor) but this was something I just couldn't chance in case I needed to head to the hospital. He said that as long as I'm not having any pain at the location or showing obvious symptoms that it's okay and to call Dr. Vukov's office on Monday. He said it does happen, ports can move or become dislodged. He said my doctor will take a look at it and then decide if I need to have surgery to have it re-attached. AHH!!

I've never had any issues with my port and it's definitely something I am still so glad I've had done. It's used to draw blood from, for when I have blood and platelet transfusions, and to receive chemo treatments. Some people are pretty surprised to hear I have a dual port instead of single but my oncologist said this one would be best for me due to all the chemo I would be receiving. SO much easier than constant iv's.

So I'll be calling first thing tomorrow morning to try and get this all taken care of...


I'm off to bed. Tomorrow is Halloween! I'm a room Mom and Aly has her school party and then parade of all the preschoolers in their costumes and I'm pretty excited!  : )  Then tomorrow night we're taking the kids to see family and for trick or treating.



Kim

Finally!

   Feeling better (for the most part!). My body is pretty achy right now from going off the steroid but other than that things are okay. No appointments this week, I seriously cannot remember having a week without a doctors appointment!

 Aly had her Halloween dance/costume party last night. She loved it! I'll post a few pictures soon.

I was hoping Connor would nap today because he has a major case of the crankies but I don't think that's going to happen. So I guess instead him, Aly, and I will all watch Tangled together for the millionth time.

         : )   Kim

The house is quiet...

       Both kids are sound asleep. Justin is asleep. I have 20/20 that I recorded the other night on in the background just for a little bit of noise. But my mind is just running.

I'm not ready for the weekend to be over. They always go by way too fast.

Yesterday didn't go as planned. I met up with my three sisters to decide on what headstone we wanted for Mom's grave (my brother said he wanted to leave this up to us girls to decide on so he didn't go with). We all agreed on one that we loved but then one changed their mind so nothing ended up getting ordered. It was tough. It was tough even walking in that place knowing what we had to do, but then leaving and knowing that what was supposed to get accomplished didn't was even harder. It's all just so final. I don't have any hard feelings towards my sister Connie over this, she is grieving in her own way. As we all are. I miss my Mom every minute of everyday. But one thing I always think about is that Connie took care of my Mom for the most part at her house before she was hospitalized the last time. As everyone knows, none of my siblings are close at all.  Even though we very rarely talk I still wonder how each is doing all the time, and I think of Connie. She has to be having such a hard time with this because she has to walk back into the house that our Mom was at so much of the time towards the end of her life. Again, I don't harbor any hard feelings towards her. We all need to do this for our Mom, and I know it will get done. But it's just tough.


I'm still sick with this cold. I'm assuming that I'm not getting better as quick as I usually do when I have a cold is because of being on the steroid. It seems like one day I'll feel a little better and then the next day I'll feel kinda crummy again. But I am off of it now so we'll see how I feel tomorrow and if not better than I'll call Dr. V's.


I always worry. I can't help it, I've always been this way.

I ended up starting to show signs right around this time last year of being sick -  but I didn't know it was cancer. My symptoms all seemed like a bad cold that just wouldn't go away. And then the enlarged lymph nodes appeared on my neck and I think I "knew" it was something more. I know my oncologist is right on top of everything and all is fine. But my mind still wanders back to a year ago. I can't live my life living in fear of the "what if's" and so on but still. I'm making sense in my own mind right now, not so sure I'm getting it explained so well though here. Do you know what I'm saying?

But one thing I do know for sure if that I am incredibly thankful to be here. To worry and all.  ; )


I'm tired. Aly has school in the morning and I think I'm going to try and get some sleep.


Goodnight.   



  

Random

My cold seems to be getting a little better. I'm so glad!

My mouth sores are rearing their ugly head again. I totally forgot about making my mouth ice cold when I had the Vincristine on Tuesday. So far they aren't too bad and are just on the inside of bottom lip.

I am seriously in love with the new show 2 Broke Girls on CBS. That show cracks me up. I just wish it was longer than 30 minutes once a week. I think I say that everytime I watch it.

Today I slacked big time and let Aly watch a lot more tv in one day than she usually does. Neither her or Connor watch much tv but since I wasn't feeling the best this morning I let her watch two Disney movies. Aladdin and Tangled. She LOVES both and is currently obsessed with Princess Jasmine and Rapunzel. And every other Disney Princess out there.

I'm making Christmas lists for the kids. Family members have been asking and I feel so excited to be doing it this year.

Brr...it's definitely getting cold out. I'm not ready for cold weather. At all. I think we might need to get the kids winter coats this weekend.

Aly's Halloween costume is so pretty! I'm anxious to post pics but I need to find her some shoes to match it before I take any pictures. For the last couple of years I've bought Aly cute glittery shoes from Target. They come in assorted colors. I'm thinking about picking her up a pair from there that will match her costume and I know she'll get plenty of wear out of.  And Connor's - I might have already mentioned it but his is perfect for him! He even does this perfect little "roar" to go with it. And nope, he isn't going to be a lion. That was last year. : )

I'm thinking about trying to make Chicken Enchilada soup *possibly* tomorrow. I love it from Chili's and I have the exact recipe. Everyone that knows me knows I do not like to cook unless it involves a crockpot so this sounds pretty easy.

Without going back to my last blog I can't remember if I had mentioned it or not, but Dr. V started me back on the steroid, Dexamethasone, at this last weeks appointment. My sleep is so out of whack right now. I take two in the morning and one in the evening and so sleep is not going very well. Usually I have a huge spurt of energy while on it but not this time. I'm pretty sure it's from being sick this week. I'll go off of it on Sunday and if things go like they usually do, I'll probably be hurting pretty bad a few days afterwards for a couple of days. Just body aches mostly from going off of it.  

...

My sisters and I are meeting up this Saturday morning to order my Mom's headstone. I'm not ready to do this. But it's time. Last week I was told that even if it was bought then than it still wouldn't be able to be placed until atleast January. I know Saturday is going to hard. Justin offered to go with but this is just something I feel like I need to do. None of my siblings really get along and I know he just wants to be there to support me but I just feel like I need to do this "on my own". And I'm thinking about possibly going to Bloomington afterwards to the cemetery.

I really miss my Mom.



Okay, I'm going to try and get some sleep.

   

Feeling alright

 


    Yesterday was my bloodwork, doctor appointment, chemo, and 14th spinal tap. Everything went fine with all of it. Dr. Vukov said he's very impressed at how well I'm doing and handling all of my treatments. My next appointment is in 2 weeks with the NP Laura and that is mostly to check my counts and make sure I'm doing alright. My counts have dropped a little bit but Dr. V isn't too concerned, he said it's from the chemo pill I'm on here at home, 6 MP (Mercaptopourine). And I also started the steroid back up again, so I'm on Dexamethasone for days 29-33. I really should make a list of stuff I want/need to get done right now because each time I've been on a steroid in the past it's given me a ton of energy. And then I go off and crash.


  I'm still sick with my head cold. Mostly just sinus drainage and I'm very limited on what I can take because I'm on Keppra and it has so many drug interactions. But other than that I'm not feeling too bad. My back is a little sore from my spinal tap but I think I've just learned what to expect from having so many. My next one is scheduled for December 13th and the one following is scheduled for January 10th. Dr. Chee is the one that performed it yesterday and he's great, he's quick and makes me feel very comfortable.


  My friend Carrie picked Aly up from here at home this morning and took her to school so I wouldn't have to go out. She has a daughter right at the same age as Aly and they are both in the same preschool class which is nice. Aly is crazy about them! She's planning on taking the girls to McDonald's for lunch after school and then dropping her back off here at home. This way I can have a little bit more of time to rest today. Right now Connor is driving his little Mickey Power Wheels car through the upstairs of our house (I have a gate up so he can't decide to go for a ride down the stairs).


 Aly's Halloween costume is adorable, it was just delivered a few days ago. I'm excited for Halloween! And I just love Connor's - it fits his personality so well! ; )  But at the rate we are going I'm hoping we won't have snow on Halloween. Fall is definitely my favorite season but I'm not ready for winter! I think it's about time to shop for winter coats though for the kids.


  Alright, time to get going. I'm going to play with Connor some (now he has on his sister's Minnie Mouse ears, oh my!) and then possibly put him down for an early nap before Aly gets home.



*If you would like, leave me a comment on here or send me an e-mail and I'll add your e-mail address to the list so when I post a new blog you'll get a notification.*
I have it already for Butch & Carrie, Jack & Mary Lou, and Don & Marge.


     Have a good day!

Blah.

 

    I woke up this morning with a head cold. Scratchy throat and a slight cough. But as the night has gone on I've begun to feel even worse. I'm hoping I'll feel a little better tomorrow.


  Tomorrow I also have bloodwork at 8:20, appointment with Dr. Vukov at 9:20, chemo (Vincristine), and then a spinal tap at Methodist. A long day ahead!


I really should be sleeping.


But tonight I keep thinking about Lisa Schmidgall and her family. I knew she had gotten considerably worse in the last week. And then her husband posted an update on her blog yesterday afternoon saying she had taken a turn for the worse and wouldn't make it much longer. Such a sad situation. If you aren't familiar with Lisa, she was a teacher here in Pekin and was diagnosed last year with Stage 4 lung cancer. She has two children, right about the exact same ages as our kids. She was only 33.  She passed away today. Just so sad. Please say a little prayer if you are reading this for comfort for her family during this incredibly difficult time. I'd appreciate it.

I'm going to try and get some sleep now.


-Kim

Our weekend...

   Consisted of a lot of this...

The finished product...the kids' painted and decorated pumpkins.

Oh, and this.

 I can't forget to post about this. Especially since it's not something that just happens everyday...

We all spent some time with Bogdan, the 5 week old white tiger. 

The picture above is so cute, even if Connor is giving the lady that works there a not very nice look... ; )    He just wanted in on the action also!

We spent the afternoon at Brown's OakRidge Zoo in Smithfield, IL.

What a great experience! : )

Thoughts...

    I'm always terrible at coming up with titles for my blog posts...



    The radiation has been put on hold for a couple of weeks.

 I went in and had bloodwork done today and met with my oncologist to have him answer some of my questions regarding this upcoming radiation. I told him exactly what was on my mind and all my worries/fears about having it done and we talked about all the risks involved. He reassured me and also told me he wants to put this radiation on hold for now and wants for me to meet back up with the radiation oncologist at Methodist, Dr. Carpenter, and have him go over things better for me before starting it up. So instead of going in tomorrow morning for my appointment for the Cat scan and to have the mask made and marked I'll be scheduling another meeting with Dr. Carpenter.

Dr. V did answer most of my questions but he did tell me he doesn't have all the specific answers I need and that is why he wants me to wait until I meet back up with Dr. Carpenter again. Another reason is because since I was originally supposed to start this up next Monday and my new round of chemo is supposed to start this coming Tuesday which includes Methotrexate orally, Vincristine, and then a spinal tap with Methotrexate also - he said he considers all that more important than the radiation right at this time and doesn't want me to miss that. And with the Methotrexate I'll need a little bit of time for it clear out of my system or could have some nasty side effects. So now it looks like it will be around the first of November before starting.


Tonight Aly had tap and tumbling. She did so good! I loved watching her! Justin has been taking her because lately by the time her class starts I'm just exhausted. But tonight was watch week and I'm so glad I went and watched, and Justin's Parents went with also while he stayed home with Connor.





Aly brought my Mom up tonight just out of the blue...she told me she wanted to go spend the night at MeMaw's house. And it hit me, hard. I wasn't expecting it and just didn't know what to say...  I asked her where MeMaw was at and she told me that she went to Heaven because she had too many boo boo's and that they just weren't getting better. Oh goodness...  My sweet girl.

My sweet 4 year old that just is too young to understand.

I've had a decent couple of days but I'm missing my Mom so much tonight. We went to Bloomington this last Thursday and I went to my Mom's grave for the first time since her funeral. It was so rough. I took a beautiful bouquet of flowers that I know she would have loved and one pink and one blue balloon from each of the kids and tied it on to the bouquet. I talked and cried and talked some more...but it's not the same.

I miss her.  

Wonderful weekend!

   Justin told me this last week he bought tickets for us to go see Reba in Bloomington. Mostly for me, he's not a big fan of Reba. ; )  It was a HUGE surprise!! I've always wanted to see her in concert and she used to come to Peoria every year but hasn't in a long time. And he planned it all out and kept it as a secret for me. And this also included an overnight stay in a hotel.

We rarely get out so this was an extra special treat! Usually my counts are low and it's just not worth the risk of me getting sick so we don't go out. But right now I'm doing a chemo pill from home (6 MP) and my counts are good and this is before I'm supposed to start the radiation so this was perfect timing.

We went to Bloomington on Friday afternoon after dropping the kids off with Justin's Mom and Dad. And we went to the hotel room and got ready and then headed out to Outback for a great dinner. We both had steaks and they were SO good. Oh my goodness, soooo good.  And after we went to the concert. We had really great seats but since nobody was sitting in the seats a few rows up from us we decided to move up before Reba came on so we could see even better. The Band Perry was the main opener for her, but a few other bands performed as well (Eden's Edge and Steel Magnolia). And afterwards, we went back to the hotel. It was a great night and we had such a good time! We very rarely get out just us two - we missed the kids like crazy but we knew they were having a good time with their grandparents. : )  And on Saturday we left and came home. I had such a great time and was so thankful for that special time with Justin. And I love that he completely surprised me with the little get-a-way. A very much needed break for us, from this long year we've had.

 But I'm glad to be home, under one roof again with my little family. Feeling incredibly blessed and thankful.

Questions regarding radiation

I am scheduled for an MRI this Tuesday before starting the brain radiation therapy. I'm being honest here, this whole thing scares the heck out of me...  My doctor, Dr. Carpenter, at Methodist had to tell me all the risks involved with it.

1.)  I have a chance of memory loss with having this brain radiation. Dr. Carpenter said if I was 85 years old he wouldn't have even bothered mentioning it, but since I'm not even 30 yet he needed to. I'm terrified if this does happen I'll lose all the precious memories I have of everything from my life.

2.) I have a 1 in 1,000 chance of a new form of cancer developing from the radiation.

3.) As soon as I met with Dr. C he asked if I had help with the kids. Um...yes. He said I need to expect that I am going to have major fatigue from this. This scares me because the kids need me - they depend on me during the day to be well, their Mommy. If this does drain me how am I supposed to take Aly to school, and so on? 

4.) Since this will focus only on my brain I will most likely develop cataracts within five years.

5.) Have you seen the mask I'll have to wear? And then basically be bolted down to the table so I can't move? Oh my. I've been told exactly what it will look like by my doctors so I'll know what to expect. But this scares me also. I seriously need a block on Google Images on my laptop. Okay, this last one is a little funny. ; ) Guess I'm just trying to find something a little humerous in this...



I plan on calling my oncologist's tomorrow morning and see if I can be fit in for even just a few minutes to talk things over with him before I start this next week. I'm scheduled to start this next Monday and then have my appointment with Dr. Vukov the following day. But I need to have my questions regarding all of this answered before I start it.

Procedures

I've finally compiled a list of procedures, etc. I've had done since being diagnosed in December. I don't have every single spinal tap and blood/platelet transfusion written down. But especially so in the beginning I would on average have 1-2 transfusions a month and I am currently at 12 spinal taps and have more coming up. And I don't have it listed but I have an appt. with my oncologist EVERY week, usually on Tuesday mornings.

I've been wanting to get this all documented so I'll have it to look back on and I've finally taken the time to go over all of it.



10/1/2010
Cbc - everything looks fine. Assured my symptoms (swollen lymph nodes, trouble breathing and signs of a cold) were not cancer. I had googled swollen lymph nodes and cancer was the first thing to pop up... (Later on my oncologist told us he thinks this came up around Halloween).


12/6
Appt. with Dr. D., my family medical doctor. I push for an x-ray. Still sick, not showing any signs of improvement.

12/7
Call from Dr. D himself, said radiologist called him from Methodist and said I needed to go in for a few days - possible pneumonia. Packed my bag and headed to Methodist. Had to stay the night, did bloodwork, wasn't told much.


12/8
Diagnosed with Acute Lymphocyctic Leukemia (ALL)
Thoracentesis - removed 1 1/2 liters of fluid from my right lung.
Echo cardiogram done
Met with my oncologist, Dr. Vukov, for the first time.
PET scan

12/9
Bone marrow biopsy
Central line placed (which ended up getting infected 3 times in the next month).


12/10
Started chemo

12/11
Haircut in the hospital


12/14
Chemo


12/17
Chemo - Rough day of it


12/
Major hair loss all of December
Numerous scans done

12/24
Was expected to be discharged that day - but as I was in the process of being discharged I had 5 seizures. Immediately moved to ICU. Obviously not discharged (very thankful it happened there and not at home in front of the kids!). Met with Neurologist, Dr. Dong, for the first time.


12/25
Moved back to Oncology floor so I could see the kids on Christmas Day and things were better with me. Seizures were caused from toxicity level of chemo drug (Asparaginase) to my brain.


12/27
Per doctors orders; all chemo was stopped. Liver enzymes had skyrocketed and they were worried about me possibly going into liver failure. Met with liver doctor.

1/4
2nd bone marrow biopsy


1/5
Met with physical therapist (they were worried about me losing strength and muscle from not being able to move around as much).
Also met with a nutritionist, as of then I was down 48 lbs. since 12/7 (I had no appetite at all and was constantly sick from the chemo).


1/7/11
REMISSION!!
Liver biopsy done (thru my jugular vein)

1/8 Discharged


Bloodwork 2 times a week after being discharged. But still no chemo; liver enzymes were still all out of whack.


2/22
Dual Lumen Powerport surgery (small port placed in chest for chemo).


3/1
Started chemo back up


Chemo went as follows:
4 days a week for 2 weeks. Then chemo 1 time a week for 2 weeks. Repeat. Repeat. Repeat.

4/12
Neupogin shot in stomach to increase white count.
Type and Cross at Methodist (always needed before I can get blood transfusions).


4/13
Blood and Platelets at Methodist


5/3
Spinal tap
Type and Cross


5/4
Blood (2 bags)


5/7
Mouth sores (first time having them)  All from chemo (Methotrexate).


6/3
Spinal tap
Type and Cross


6/6
Blood and Platelets

6/28
3rd Bone Marrow biopsy
PET scan
Given a week off from chemo for counts to rebound.


7/1
Echo cardiogram done at Methodist


7/12
Spinal tap


7/26
Mouth sores are back

7/30
Was told to expect hair loss, again. Started coming out in clumps today.

8/6
Now down to very little hair.


8/8
Just another follow up with my Neurologist.  


8/13
Was frustrated with the whole losing my hair thing - to be honest, I was tired of taking a lint roller to my pillow every morning to pick up all the hair I was losing. In some spots it was still a little longer so I had Justin just shave it for me. And then he shaved his. And then my brother in law Jon shaved his in support of me. : )

8/17
Spinal tap
Fighting with insurance over covering a much needed chemo drug/pill. They finally gave in after arguing back and forth and it was taken in front of an emergency advisory panel and was covered for the most part.
Chemo W, Th, and F that week. And Tuesday - Friday all the next week.


8/23
Spinal Tap


8/31
Type and Cross

9/1
Blood and Platelets


9/2
My Mom passed away. I kept rescheduling my appt. with Dr. Vukov because I knew it would be very soon for my Mom and he just gave me a week off because of everything going on.


9/13
Spinal Tap


9/15
4th Bone Marrow Biopsy - GREAT results!

9/20
Spinal Tap (12th)


10/11
CT scan scheduled before radiation begins.


10/17
Will begin 12 days of brain radiation. This is part of my treatment plan, nothing is cause for concern. Exact words from my doctor: If there are any cancer cells floating around that haven't formed yet this will kill them off". I'm terrified of it, it's something new that I've never done before and of course, it has risks, but it's something that is part of the treatment plan to keep me in remission. Oh, and add hair loss to this here also - I'm expected to completely lose it again (3rd time) and there is even a chance it could be permanent this time. But something that weighs very heavily on my mind is the chance of me having memory loss in the future. More about that in my next post.

I'm exhausted...

  But I can't sleep for anything. Having this steroid in my system has me wired - today I had so much energy that I moved furniture around in 2 rooms downstairs. I feel so tired but just cannot fall asleep...Justin is sound asleep snoring next to me in our bed right now. Must be nice! ; ) I kid! For right now I'm going to be on it until Sunday and then I expect to crash. From past experiences it makes me feel like I have all the energy in the world while on it and when I go off I feel like I've hit a brick wall and then want to sleep for days. Aly has preschool in the morning so I'm hoping for a few hours of sleep...Off to bed. Again.

Fantastic Results

   That's just what Dr. Vukov said yesterday regarding my bone marrow biopsy last Thursday. He said everything looked fantastic and he couldn't be more pleased at how things are going. That makes me so happy to hear! All of my counts are rebounding and all looked good there also. After my doctor appointment I had chemo, it was pretty quick since all I had was Vincristine. Then I had to go to Methodist for another spinal tap. Dr. Chee did this one and he's very quick and is a very good doctor. He is the same doctor that performed my first procedure after being diagnosed back in December, my Thorocentis - where he removed 1.5 liters of fluid from my right lung. He always asks me about the kids and just makes everything go smoother. Afterwards I went to recovery for an hour and then came home and rested for the rest of the evening. Aly had dance last night and Justin took her ~ she does so good at dance! Today she had school and it makes me feel so happy knowing how much she loves it there!! And I love having those few hours three days a week with our sweet boy here at home. I'm having a rough time still with missing my Mom, I know that's normal. I miss her so much. My hardest time I think is at night when I just want to call her and unwind. Or right after my oncology appointments when I just want to call and give her an update. Or when we are driving in the car and Aly talks about "MeMaw running on the clouds". That's just what Aly always called her from when she first started to talk. Gosh, it's all just so hard. I miss her. I know this blog post is all just running together but I'm posting from my phone and just having issues with it. The plan for chemo coming up sounds like it will mostly be from home. I'll be doing Vincristine in the office every so often, but I started yesterday with doing a pill form of chemo called Mercaptopurine for days 1-84 and the steroid Dexamethasone for days 1-5 and then from days 29-33 and 57-61. On day 29 of this phase I'll have another spinal tap. And in the next week or so I'll be doing the brain radiation. I'm very nervous about it - it will consist of a low dose of radiation directed to my brain and it will be everyday for 10 days. But I'm trying to remain calm and praying for comfort. I'm going to go now, just wanted to give an update. Off to bed. Goodnight!  -Kim

Update and a few pictures

       I had my 4th bone marrow biopsy done today. I was a nervous wreck as usual when it comes to having these done. A NP named Deb Rufus did this one and she was fantastic. I asked for sedation and they gave me a small dose of Demerol and Versed mostly to calm my nerves. I was completely awake for the entire procedure. And then to numb the skin they used Lidocaine. It hurt just as bad as all the others I've had done but she was pretty quick about it. Justin was in the room with me but because it's such a small room and from all the people that were in there for the procedure he wasn't able to be right up with me. But atleast being able to have him in there helped calm my nerves. Afterwards I had to lay on my back for 30 minutes to make sure there wasn't any bleeding and to let the meds wear off. I asked them to show me what the marrow sample looked like and they showed me. The easiest way I can explain it is that it just looked like very thick red blood with small bone fragments in it and they already had it on a slide. I wonder how many people actually ask to see it, but I was curious.  Now they just have to send it off and will have the results by my appointment with Dr. Vukov on Tuesday.  On the way home I told Justin it felt like they were using a cork screw and it was being screwed into my back - and he said that was actually exactly what it looked like. Ehh.

Aly has her third day of Hobby Horse tomorrow and is loving it!!  A friend of ours has a little girl in Aly's class there and she offered to take Aly in the morning so I wouldn't have to take Connor out and could try and rest up. I usually don't take people up when they offer to do something (I admit it, I'm just stubborn and try to do everything myself) but I actually accepted her offer. She even offered to bring Aly home but I told her I have a few errands I have to run about the time Aly would be getting out so I'll just pick her up. She is such a nice lady! While I was in the hospital from December to January she brought over a bunch of meals and has even done some since I came home. One day she even dropped off right out of the oven banana bread and pumpkin bread.




And here are a few pictures of Aly from her first day this last Monday. Such a cutie!  Love her pose in the second picture!

Here is a picture of our two cuties sitting on a swing together at the park. This was taken with Justin's cell phone so it's a little blurry but still adorable.

And here she is when she started back to Tap and Tumbling recently. Notice the Disney Princess slippers? She insisted on wearing them! : )

Off to bed. Goodnight.

What a day...

      I had my weekly appointment today. Last week Dr. V gave me a week off because of everything going on with my Mom. So I started back today and saw the NP Laura.

After dropping the kids off with Justin's parents I headed to Peoria for my appointment. I kept hearing sad songs on the radio and was constantly flipping stations so I wouldn't have to listen to them. Then during my appointment I'm told I'm going to have to have a bone marrow biopsy done very soon (which was later scheduled for this coming Thursday there in the office) to make sure everything is still going in the right direction.  And I was also informed I will be starting brain radiation very soon.

Radiation? Where did that come from? This is the first I've ever heard about it being part of my treatment plan. And when I hear that word I immediately begin to fff-reak out, my mind jumps from one thing to another and I just about have a melt down right there in the room. I had a million questions running through my mind but couldn't really form sentences that made sense to anyone but myself. I've read so many other blogs of people going through cancer treatment and they have had radiation therapy but they have had it to shrink tumors - so that is what I immediately think of. I asked why I would be having it and LH told me that it's just part of my treatment plan and if I do have any cancer cells floating around in my brain this will kill them off and to not worry. By then, I sit up more in the chair and move about as close to Justin as I can without actually sitting in his lap. She asked if I had any questions - and then she went on to how it works. She said I'll be referred to a doctor at Methodist (my hospital of choice, or I could even have it done there in that office), and then go meet the doctor and go from there. She said it will be a medium to moderate dose and will be up to that doctor on how many treatments I'll have. Oh, and then she mentions about the mask. You have to wear a mesh mask covering your entire head and then have it hooked down so you can't move for the entire procedure. The thought terrifies me. My appointment next week is with Dr. V and we're supposed to talk more about the radiation therapy. As scared as I am about the whole thing, I just need to be strong for myself, Justin, and the kids.

Whatever it takes to stay in remission, I'll do.

She says she's sorry to hear about my Mom and how I'm doing and I about lose it. I try to talk and my voice breaks.

All my counts are rebounding which is great news. The paper is upstairs with all the numbers and honestly, I'm just too tired to go up and get it right now.

Then Justin and I walk out and one of my favorite receptionists asks how my Mom is doing. I mutter out, she passed away on the 2nd. She apologizes and I know she feels bad bringing it up. I don't want her to feel bad, she was just being nice.

I go to chemo and get in and out pretty much, all I was having was Vincristine so I wasn't there for very long.

Head out to the parking lot. Call Justin and try not to cry (he left and went to work since my chemo was going to be so short). Just feeling so stressed and overwhelmed. I used to call my Mom right after every appointment and then it hits me that I can't call her today. When stressed or worried I would call and she would calm my fears and makes things all right in the world.

Get back to Pekin and pick up the kids. I fed the kids lunch and put both down for naps. The mailman comes to the door with a package and then I'm flipping through the mail and see a letter addressed to me. So I open it and it's a letter from a granite and marble company trying to sell me a damn grave stone. Not something I needed to see today. And no, it wasn't just junk. The first lines of the letter said something along the lines of "We're sorry this letter hasn't come sooner, we wanted to give you time to grieve".  They must have been given my name and address from the funeral home from the day we were there setting things up for my Mom's services. Seriously??? So I tossed the the mail on the stairs and went downstairs to lay down while the kids were napping.

And tonight Justin took Aly to tap and tumbling and I stayed home with Connor. Connor has a blister on one foot and a mark that looks like it's the start of a blister on the back of one of his legs. And I remember seeing a mark on his gums a few days ago that looks like a blister and I'm just a little concerned. And my first thought was "I'm going to call my Mom and see what she thinks". Oh my goodness, Kim. You can't. You can't call.

You can't call anymore.


And I just cry.


Justin and Aly come home and I tell him how I'm feeling. Aly tells me how much fun she had and it cheers me up and we talk about what all she learned. Then we put her to bed (Connor was already asleep) and then head to bed ourselves and now I'm working on this. I wanted to get all this out tonight. And now I'm crying again. I have my good days and my bad days, and today is definitely a bad day. I know I keep saying it, but I just miss my Mom so much.


So much.  



I need to go to bed.

Lost...

    That's how I'm feeling right now.

 My Mom passed away on September 2nd. I was there with her during her final moments. With Justin by my side for support. I kept going back and forth on whether or not I could be there at the end. Knowing what was going to take place. I just felt like I wouldn't be able to handle being there with my Mom in her final moments when she took her last breaths. But Justin was there with me for support, and that helped me so much. Now I look back and I'm glad I was there. She went peacefully surrounded by many people that love her dearly.

As hard as it is knowing my Mom is no longer here I know she's no longer in pain and isn't suffering. I miss her so much. Nights are so much harder on me. I miss calling her to discuss what took place on Nancy Grace that night and for her to call and give Justin a hard time over the Nascar race and who was going to win. She loved joking around with him over the races, and so did he. I know he'll miss those phone calls also.

Her wishes were to be cremated and to just have a graveside service. So on Tuesday all of us headed to Bloomington to plan out everything. And then we decided to have the services on the following Friday. And it poured almost the entire day. After the graveside services were over we went and had a family and friends dinner. My Mom would have loved it and having everyone together. And we attempted a balloon release from all the grandkids but again, it poured most of the day and the balloons just wouldn't go up. So we held on to a few and brought them home and let the kids release them.

I'm sorry to everyone for not calling you back right away. Right now I just honestly don't really feel like talking. I'm having a very difficult time with my Mom's passing. I know she's in a better place but I just feel like I've lost such a big part of me.



I called Dr. Vukov's office this last Tuesday and informed them about what all was going on and they told me to take a week off from treatment and just to go back on this next Tuesday for bloodwork, appointment, and chemo. With everything going on it was very much appreciated. But I did go in to have my counts checked just to make sure things were alright.

 I had gone in the week before for chemo and to have my counts checked and they were pretty low then so we decided it would be best if I went in for platelets. I didn't need the blood right then and I was going to hold off but not knowing what exactly was going to take place with my Mom I decided to go ahead and go get both, I knew the blood would make me feel a little better physically. So I went in and had a type and cross done that day and the transfusions done the next day, 2 bags of blood and 2 bags of platelets.

My counts on 8/31 were:
White Blood Count    0.76    (normal range 4.26-9.66)   So mine were very low meaning - meaning I basically have no "infection fighters".
Platelets   8   (normal range 133-382)  Very low also.
Hemoglobin  (Red blood cells)  (normal range 11.5-16.0)


My counts on 9/6 were:
White Blood Count   0.99
Platelets  78
Hemoglobin  9.1


Aly had her orientation back at Hobby Horse this last Wednesday and she loved it! She was supposed to go for her first day this last Friday but had to miss it because of everything going on. But she'll start back to school on Monday and then go M,W,F each week. And she has tap and tumbling on Tuesday nights.
So busy busy busy!



Off to bed now. Thank you all for the prayers, calls, and cards during this difficult time. We appreciate it so much.


                  Kim

Finally an update

      The last 4 weeks have been a whirlwind of craziness. That is the easiest way to explain.

I'm awful about remembering dates. Without asking Justin exact dates (and he's snoring in bed next me right now!) or writing dates down in which I'm also really bad about doing I can't remember them for anything. So please excuse my lack of memory here.

I kept calling my Mom on her cell phone for a few hours one day and wasn't getting an answer. Deep down I had a feeling something was going on but didn't let my mind get ahead of myself. I told myself if something was wrong I would get a call. Well, that night around 7 P.M. I got a text saying my Mom was the ER. So Justin put the kids to bed and I headed to the hospital. I got there and saw her and we talked for a little while. While there she was even talking enough where she asked the doctor if it was safe me being there since I'm going through chemo - and his answer was no, I shouldn't be there because it wasn't safe for me. I knew he would say that. But that was my Mom - thinking of me.  She told me to go home and spend time with Justin and the kids and to take it easy. That's the last time I've heard her voice now in a few weeks. That was so hard to even type. That night she was moved to OSF and within a few days time they ended up doing emergency surgery and had to remove most of her colon due to diverticulosis. The night she had been transferred her breathing was so bad they had to put her on a ventilator. This isn't her first time on a ventilator and we had hoped so badly she would be able to come off of it within the 14 days you are allowed to be on one. But her body just wasn't able to do so. So after 16 days I believe it was they ended up having to do a tracheostomy (again, not her first - the first one she had almost 2 years ago was reversed). Since having the trach, my Mom has been transferred to Triumph hospital in Peoria and is in the ICU. She hasn't been doing too well with weans from the trach and they've been keeping her mostly sedated. I talked to her nurse earlier and she is supposed to be taken tomorrow to OSF for a CT scan of her abdomen to check for infection around her feeding tube.

Two of my sisters (Lynette and Connie) are getting along with each other and but are refusing to be civil with myself, my sister Debbie, and my brother Jim. Things between all of us have never been great, but have just gotten even worse over the last few years. I have pretty much just been talking to my brother for updates or from nurses or when I go see my Mom. And I think the final straw between myself, Connie, and Lynette was when I received a text right after all this started with Mom and it was Connie griping at me for not being at the hospital as much to support Mom and to let her know what she needs to be fighting for. I have been going up, I admit not near as much as previous times she has been in the hospital. But before I wasn't fighting Leukemia. My Mom understands this. But two of my sisters do not. They treat me like a child and just don't understand my situation at all. Or seem to care. My own doctor has told me if I do go up that to protect myself that I need to wear a full gown, gloves, and mask. I'm not sick and risking my Mom's health but since my immune system is pretty much all wiped out it won't take much at all for me to get sick. I'm taking it one day at a time...hoping and praying for the best for my Mom.



My counts are dropping. I know it and I can physically feel it.

I had an appointment on the 17th with NP Laura and she told me that it was just part of my scheduled treatment plan (but I wasn't informed ahead of time just due to miscommunication) but I would be having chemo starting that day and everyday thereafter until the 26th for about 3 to 4 hours a day. And a few spinal taps tossed in there also. Things are still going good though. It was a long week and a half of going everyday for chemo. Oh, and I can't forget about the whole insurance not covering a chemo drug thing that really had me stressed. Us stressed. Dr. Vukov wanted me to start a chemo pill here at home and our insurance thru CAT wouldn't cover it. Plain and simple. It's not a new drug, or a tiered drug, or even had a generic. They just wouldn't cover it. After Justin calling United Health Care and the business office calling and many arguments later it was finally taken in front of an emergency advisory panel and was approved. If it wasn't approved than we would have had to pay $300. AT cost of the pharmacy for 35 pills. But since it finally was our co-pay was $40. Pretty big difference. We don't just have $300. sitting around -  I have a million medical bills that just seem to never end along with all the rest of bills, the Trailblazer finally being fixed and so on. We could have squeezed it by but still - it should be covered and thankfully it was.

So I'm starting to feel pretty rough. I was awake for 2 hours this morning and was ready to go back to bed. That right there tells me I need to rest. I expected this and I hope my body will bounce back some and I'll start to feel better. I have bloodwork, doctor appointment, and chemo on Tuesday. For right now it is back to once a week.  Aly also starts back to tap and tumbling Tuesday night.  And she starts back to HH for preschool beginning of September. She's so excited! : )


Just so much has been going on. So much. I'm thinking about making this blog private. If I do so, I'll be able to keep people updated as long as I have e-mail addresses. If you read this than please let me know and I'll keep you updated.

I needed to vent. And as long as I don't listen to the saved voicemails on my phone from my Mom I'm alright. When I do, I cry and cry hard.


Off to bed.