It's been a few days...

 

   I know it's been a few days since I last posted. I just have been in a blogging rut, I guess. I have been fighting this fever all week and today is the first day I've actually felt somewhat better. But for some reason, I'm just feeling kinda down today. The sun is shining and I want to be outside and to feel it on my skin but I just know that is not the best thing right now. Why I'm feeling like this I really don't know. I have everything in the world to be thankful for. And I am.



I had my appt. on Tuesday and the nurse practioner said I'm doing just remarkable. She said with all I've been thru I'm just doing great. I had just started having the fever the day before and she said from my blood work it wasn't showing any signs of infection anywhere. That was definitely something I was concerned of. She also had me have a blood culture done to check for possible infection in my dual power port. She said to just keep an eye on the temperature and if I had any questions to call. I was also told that Dr. Vukov wants to resume chemo next week as long as my platelets are up. On Tuesday they were at a 46 (the week before they were at an 8, and then need to be atleast 100 before resuming chemo).

So I ended up calling later that day and ended up talking to her again the next day. On Wednesday I told her I was still having the temp and was just concerned so I asked for antibiotics, I just want to get this fever gone. It has been staying between 99.8-100.9. She said they had the results in from the blood culture for my port and it was clear. She also said this could all just be related to my bone marrow rapidly producing right now which is a good thing. So I'm on Augmentin for 5 days. Today is the first day I've really noticed a big difference, my temp has stayed below 100.0 all day without taking any Tylenol. So I don't know if it's the antibiotics actually helping for a bacterial infection or maybe this is just something viral.

I haven't had much at all of an appetite all week. Not quite sure what that is about. I have drank plenty of fluids but nothing has sounded good to eat. So I've snacked here and there but really haven't ate much. Hoping this passes soon.

Last night Justin and I sat down and did a big puzzle with Aly and she loved it. Connor was in bed and and it felt great spending that time with her. Let's see, something new with Connor that I have to mention. Anytime he goes to leave now with Justin I'll say "Love You" and "Bye Bye" and he gets so excited and repeats it. So stinkin' cute. : ) 

I woke up very early this morning so I could watch the royal wedding live and I watched most of it and fell back to sleep. So glad we have dvr. So I'm feeling extra tired today. I think I might try to get a little nap in before Justin gets home with the kids from daycare.



Kim

Fever...

   I took a nap around 3:30 today and woke up about a half hour later and my temp had gone back up to 100.4-100.6 (if it goes any higher than 101.5 we have to go to the ER). I took Tylenol and I'm watching my temperature closely. I have my weekly blood work tomorrow morning at 8:30 and I'm supposed to see the nurse practioner afterwards so I'll hopefully have answers. Other than the fever, I'm not feeling too bad. No chills or anything.

Off to bed, I'll update tomorrow.




Kim

Easter weekend

  I had such a wonderful weekend! Saturday morning Justin and I took the kids to Northwoods Mall to see the bunny. I sure thought Connor would scream seeing him but he didn't - and Aly did pretty good with him also. The picture turned out pretty cute! : ) Then we did a little bit of shopping and then let Aly do this giant trampoline (bungee jump thing, ha!) and she loved it!! She had such a blast! That night we let Aly stay up late and watch the movie Tangled and snuggle in our bed. I thought it was a decent movie but wasn't as good as I had hoped. Still, it was so nice snuggling and spending that special time with her.

 On Sunday, the kids woke up and we surprised them with goodies from the Easter bunny. Connor loved all the little trucks in his basket and Aly loved her sugar free peeps (of course, I would find the ones that were sugar free!). Then Justin spent time with them and I went and hid eggs outside and the kids had an Easter egg hunt and had so much fun! I was so glad I was able to do that, it meant so much to me! Afterwards we went over to his parents house and had dinner and saw some family and then the kids had an egg hunt inside and had a ton of fun. It was really nice seeing everyone and we had a great time. I plan on posting more pictures as soon as I get them uploaded off of our camera.

We came home and got the kids ready for bed and then headed to bed ourselves. I thought I felt warm and took my temperature and I was right, I had a temp. My oncologist always tell me to be very careful and watch for temps over 101.5 because with my immune system being weakened from the chemo I'm much more prone to infections. I kept checking it and the highest it got up to was 100.6. I took Tylenol and went to sleep. I woke up this morning and it was 100.1 at 7:30 and I took more Tylenol and have checked it frequently since and it seems like the fever has broke. It's been staying between 98.7 and 98.1 since. I called Dr. Vukov's and let them know what it's been at and they asked all the normal questions (am I having chills, any redness, sores, pain, etc. in which I haven't had any) and they told me to just watch it closely. I have my normal weekly appointment in the morning anyways for blood work. Other than having the temperature earlier, I'm feeling pretty good.

Now I have a request from everyone that reads my blog. I called last night to talk to my Mom and she was having a breathing treatment so I talked to one of my sisters. My Mom has had ongoing health issues for quite some time now but just recently it seems like things are getting worse. I don't want to get into details on here right now. Will you please say a prayer for an improvement with her health? I love my dear Mom so much.

Thanks for reading. Hope everyone has a great week!


Kim

Movie Time

      Listening to the rain while laying in bed and watching Independence Day with Justin. I haven't watched this movie in so long! Probably since it came out in 1996, actually. I love this special time with Justin.

 I felt pretty crummy earlier today and spent most of the day in bed just taking it easy. I woke up with this cold I have and was just congested and had an awful headache. So I stayed in bed and Justin stayed home with Aly and Connor. Yesterday daycare called and Connor had a fever of 102 so they sent him home and he has to be fever free for 24 hours before going back. Sweet boy seemed so much better today though. It's so hard seeing your babies not feeling well.

My neuropathy is bothering me pretty bad tonight. I think I'm probably going to be using an ice pack when I go to bed so I can sleep. It's especially bad in my right foot and my fingers.

Back to watching the movie. : )


    Feeling very thankful tonight.

Great appointment!!

   Yesterday was a great appointment with Dr. Vukov. He said my counts all looked (reasonably) good. My white count had gone down a bit since my last appointment but wasn't anything to be concerned over, my red blood cell count has increased greatly (which is great because those are the infection fighters), but my platelets hadn't gone up much at all.

He said he was very happy with how well I am doing and sees no signs whatsoever of the Leukemia coming back!!

Let's just say I was SO happy that I was talking like crazy to everyone around me. Haha! That was according to Justin. Love that hubby of mine! : )  I was just over the moon happy and feeling so thankful!

We have completed my first round of treatment and are now starting my second. I'm going to post in another blog what my last course of treatment was and what my next course will be. But since everything is going so well and my oncologist sees no signs of the Leukemia returning and can tell the chemo is doing what it is supposed to do my treatment schedule will be changing. From chemo quite often to only having it every ten days. To me that is a HUGE thing.

But like I said, my platelets were a little low (an 8) so he had me go in today for a platelet transfusion. No problems there, but like with any transfusion they had to constantly monitor my vitals. The first time my nurse checked my blood pressure it registered at 85/52 which is considered pretty low. My nurse was concerned so she kept checking it. I wasn't having any symptoms of the low blood pressure though. Finally after many checks it had gone up to my normal range of 97/64. I used to have perfect blood pressure before being diagnosed in December, but after starting the chemo my bp had gone up to around 150/115 and always stayed high. I had to constantly monitor it myself here at home and my doctor was very concerned so I ended up starting a med for it called Lisinopril awhile back.

Now I go back next Tuesday for my normal weekly cbc and then I won't go back for a few weeks. Dr. Vukov is waiting for my counts to "rebound" and go back to being completely normal before he starts the next round of treatment.

I have a little bit of a cold and I still don't have a ton of energy but both are getting better!

Easter is almost here and we still need to take the kids to see the bunny at the mall for pictures. I am hoping for decent weather this weekend so we can possibly do a small egg hunt for the kids here but so far it's calling for rain all weekend. Aly's getting to the age where she is definitely getting more into the holidays and Connor just doesn't understand it all yet.    

   Hoping for sunshine this weekend!  : )

Relay for Life

   I just registered online to do my first Relay for Life walk here in town in June! I'll be walking as a survivor that day and I feel very strong about this cause. This makes me feel very happy! : )


~Kim

Drip...

   Go the platelets. I keep glancing over at the bag waiting for it to be empty. Then I will have to have my nurse flush my port and then take the needle out. I also had the 2 bags of blood today, they each ran a little over 2 hours apiece and the platelets run about 15 minutes. I'm so anxious to get out of here and just be home with Justin and the kids. This has been such a long week. I'm also very anxious to have this port "de-accessed", to have the needle out and the large bandage taken off. It's just such an uncomfortable feeling having all this on my chest. I have chemo on Tuesday for the push thru of vincristine and so my port will be accessed again then.

   I'm exhausted. But otherwise feeling pretty good. And I'm loving that Justin has been here with me all day long to support me and make the day go by faster. : )  Almost done! Hope everyone has a good weekend!


~Kim

Somedays...

     I went in this morning for another cbc to check my counts to see if they had improved any since having the blood, platelets, and Neulasta shot on Tuesday. My platelets were 8 today and had been at a 10 on Tuesday. My white count was at 1.4 today and on Tuesday had been at 1.1. So my white count improved slightly but not much. This might be too much information and if so skip ahead - I'm currently having my "monthly visitor" so they said that would explain why my counts haven't gone up more. So after that I went to Methodist and had another Type and Cross done. And the plan for tomorrow is for me to be back at Methodist at 8 o'clock for 2 more bags of blood and more platelets.

Somedays I have a very hard time dealing with all of this. Somedays I still feel so angry about all this happening to me and ask myself what I did to deserve this. I questioned myself constantly in the beginning asking what I did wrong. I know now that that is just part of the process of all of this - to be angry with the world.  The sickness from the chemo, the not knowing of what all to expect in the future, the not having the energy to do things like before (cleaning, laundry, doing more with the kids). And honestly, the fear of this or something else coming up in the future and me not being around for Justin and the kids. There I said it - I think it some but have never said it out loud.  And somedays I'll see other women at Illinois Cancer Care that are obviously going thru the same stuff I am and I look at them and wonder how they seem so confident in themselves. I'll see them walking around with huge smiles on their faces and completely bald heads and they just seem so positive. There have been so many times I've been tempted to just say something to them - to tell them how nice it is to see the smile on their faces and how it improves my day so much. But I haven't - I have definitely been tempted though. Somedays I feel confident and somedays I just want to crawl back into bed and cry instead of putting my hat on and going out and facing the world.

But I am so incredibly thankful to be in remission.

Then today a very nice woman named Kim came up to me while Justin and I were sitting in the waiting room waiting on my cbc results. She said she saw I had a mask on and was curious if I was awaiting a stem cell transplant or was just immunosuppressed. We talked for awhile and I found out she had been diagnosed with Lymphoma and was going through chemotherapy also and we also had the same oncologist. We talked about how nice it was to be able to talk to each other about all we are going thru and how it seems like everyone else around us are so much older. She said she's been to the support groups but it's just so hard because she is always the youngest there and it's just not easy to talk to them. I told her I feel the same way, I haven't looked into the support groups much yet, I just still feel like I'm not completely ready for that yet. Eventually, just not right now.     

I'm just taking this one day at a time...today has been a good day and I'm feeling pretty good.

Tomorrow will be another long day so I'm heading to bed. I'll post more tomorrow.

Thoughts.

   Yesterday was a long day! I had a cbc done to check my counts, weekly appointment with Dr. Vukov, chemo treatment with vincristine, a shot in my lower abdomenen of Neulasta (rapidly increases my white blood cells), and then had to go to Methodist for a transfusion of 2 bags of blood and platelets. I was initially supposed to have the blood and platelets on Monday and had gone in to Dr. V's as planned from Friday for the cbc and then was supposed to go to Methodist. Well, after my cbc we headed to the hospital and they told us orders had been changed and I would just be having the Type and Cross done that day and would have to go back the next day for the transfusions. So I had the Type and Cross done and then headed home.

All went very well with my weekly appointment, Dr. V seemed pleased with how all is going and is working on my next course of treatment. He did say I will be having another bone marrow biopsy sometime in the near future (will be my 3rd) to make sure I'm still in remission and the chemo is working. From my weekly appointments and blood work though all shows I'm still in remission which is great!

So I ended up having the transfusions yesterday and it takes 2 hours per bag of blood and about 15 minutes for a bag of platelets. All went well and I went home last night. Aly had tap and tumbling last night and Justin left to take her to it about half way thru my transfusions. She is getting so close to the recital and can't miss any of her classes right now so I really pushed for Justin to take her. He picked the kids up from daycare and met with his parents and his Dad watched Connor and then him, Carrie, and Aly went to her dance class. It was watch week and I wanted to go so badly but knew even if I wasn't sitting in the hospital it wouldn't be the best idea with my counts being so low. After Aly was done then Justin went back and picked me up from the hospital and his parents watched the kids. We've had some stuff go on between all of us in the last couple of years and things have really changed in the last 6 months and I'm so thankful for that. I love his parents and love so much that Aly and Connor have a great relationship with their Grandparents. They had a great time and both were so tired when we picked them up.

Today I haven't done much. I've tried to take it easy but it's so hard to just sit and do nothing all day. I have had more energy today than recently and have felt pretty good. I worked on some laundry and then tonight after Justin got home we had dinner and then played with the kids. I loved.every.minute. of it!

Tomorrow morning I have another cbc to see how my counts are and depending on what they are I might need to go have another Type and Cross done and then transfusions on Friday.

Before I forget about it, I want to mention this shot I was given yesterday. The Neulasta shot had to be approved by our insurance before I could be given it. Only one company manufacturers it and it costs an arm and a leg! My nurse told me yesterday that on average this shot runs in the upwards of thousands of dollars so I looked into it and she was right, on average this ONE shot costs about $9,500. I was like, are you freaking kidding me? I was floored! Then when she said they had to wait to get approval before giving me it I just wondered what people do when they don't have insurance? What would I have done yesterday if insurance wouldn't have approved it (which according to my nurse happens quite often) and this is something I NEED to get better? Good grief.

I just went and checked on Aly and Connor before I head to bed. Aly changed out of her pajamas and had on her Disney princess Belle dress, tiara, heels, and clip on earrings and was curled up in bed sound asleep. So what does this Mommy do? Quietly sneaks back out and grabs a camera and goes back in and takes her picture. She didn't budge. Must have had a long day! Love her so much!

Off to bed. Another long day tomorrow.

This and that.

  I had planned on posting a new update on Friday but just from having such a long week and everything finally catching up with me I completely forgot. Justin and I went into my oncologist's office on Friday for my cbc and for the possible Neupogen shot. They did the blood work and then sent me upstairs to wait for the results. Very soon after one of the nurses came out and told me my counts were very low and she highly doubted I would be given the shot or have chemo that day and would probably be sent to Methodist for blood and platelets. By then I was panicking. About to pace the floor panic. I do not handle stress and anxiety well at all when it comes to any of this. I totally freak out. My nurse, Shelby, called Dr. V and he wanted to know how I was feeling physically and said as long as I was feeling okay than he would continue with treatment that day and have me go in there for another cbc first thing on Monday and then go to Methodist. Definitely surprised us all.

So the weekend passes by and Monday rolls around. We got up at 5:30 so we could get the kids ready for daycare and to get to my appointment in Peoria at 7:30. We get there and they do the cbc and come out and tell us my counts are very low (which we all knew and completely expected) and tell us they'll fax the orders to Methodist and we could go ahead and head there. So we did (after hunting down a Baskin Robbins for a yummy coffee).  We get there and they tell us that Dr. V wanted to just do the Type and Cross today and have me go back in tomorrow to see him for my weekly appointment, another cbc, chemo, and then for the blood and platelets at Methodist.

 By the way, have I mentioned Tuesday is always our busiest day of the week? Aly has tumbling on Tuesday nights so Justin rushes home from work, picks the kids up from daycare, we all eat dinner, get Connor to bed early (on weeks I don't go with to her dance/tumbling class), get Aly changed, and then rush out of the door. Speaking of her class, she has a tap dance recital next month and she's going to be a duckling. Can we all just say Aww?? Justin went and stood in line Sunday morning for over 2 hours to get the best seats available for her recital. What an awesome Daddy! She is going to look so cute in her little feathery costume. : )

As far as the chemo goes and everything, I'm not feeling too bad. I really have to push myself to drink plenty of fluids and I can definitely tell when I don't get enough (I'm supposed to drink 64-80 oz. a day). Days I don't drink enough I feel so weak. One of my absolute new favorite things now are lemon-berry slushies from Sonic. Just recently I've started loving anything sour (sour candies also) and this drink has a little bit of sweetness to it also and I just love them. Justin picks them up for me some and they are SO good! I love munching on the slush ice also. Yummy!

Here is something cute Aly said over the weekend and it just makes me smile thinking about it. Her and Connor were coloring with crayons (or more like she was coloring and he was trying to eat them) and I asked her what color hair Connor has. She replied with orange. So I asked her what color hair Mommy has and she said orange. But she said Daddy has black hair and she has brown. Just thought it was cute how she didn't even hesitate and just said orange. : )   Speaking of hair...I haven't lost much since I started this second round of chemo. I still lose some here and there but nothing compared to when I was in the hospital in December for my first round of chemo. It's very thin and definitely something I still have a hard time adjusting to since I've always had thick, long, and curly hair. They told me to expect to lose it within days 10-14 with this round and for some reason it has stuck around. I'm okay with that though. Even if I do lose it all I will be fine, it's hair and will grow back.  And tomorrow will be day 43 of this cycle. I'm also finally starting to get used to wearing a hat while out in public.

 While going thru the initial round of harsh chemo in the hospital my liver enzymes skyrocketed and they ended up having to take a break from the chemo for awhile to get things back to normal so I wouldn't go into liver failure. Scary. And that was all was from one of the chemo drugs they had given me. And they also figured out the 5 seizures I had on Christmas Eve. were from that same chemo drug. Even scarier. But from when they stopped the chemo from end of December to March 1st my hair started to regrow. Not too long ago I got out of the shower and saw this new peach fuzz on the top of my head and ran downstairs and showed Justin my head. It was so hard to not get excited. I know it was from the break I had though and that it will eventually regrow on it's own and that it's just hair. Maybe if it does all completely fall out I'll go and buy an "orange" wig.  ; )


I know this post is all over the place but this is just what is on my mind right now.

How things change...

 
    I used to drink Pepsi. That was the only soda that I really liked and that tasted good to me. Now I can't stand it for anything and have converted to being a Diet Pepsi drinker. My taste buds have really changed since starting chemo in December. Funny how things change, huh?

 It's a chilly and just overall gloomy day outside today. And so is my mood. I'm just feeling a little crummy. Yesterday it was gorgeous out and I was in great spirits.

Right now I'm sitting in the treatment room by myself. This room is large and has 16 chairs for patients to sit out in the open for chemotherapy. This is one of 4 pods for treatment. Everything you've seen in movies or tv shows with patients sitting out in the open for therapy together is definitely true here. Somedays this room is full of iv polls and patients. A lady was in here earlier for treatment and she recognized me from when she was here one day last week and she sat down by me and we talked for a bit. Guess that says I'm here quite a bit. Oh, and the receptionists and nurses all recognize me and know me by name. Oh well, whatever keeps me in remission.

 I had a rough morning this morning. Aly has been especially clingy to me lately and I don't mind it one bit. But this morning she was not in a very good mood and just wouldn't listen to me for anything. She didn't want to wear the clothes I had picked out for her or eat her breakfast. All she wanted to do was sit in my lap but I knew Justin had to get her and Connor off to daycare and get to work himself. So Aly left screaming and crying and it was just hard seeing her that way and starting all of our day off like that. I'm ready to get out of here for the day and for Justin to get off work and to pick the kids up and bring them home. I miss them all so much today.

I've had treatment all week and I always look so much forward to Friday nights. We usually do a quick and easy dinner and just relax. We really never have an exact idea on how my counts will be so we just stay home and take it easy together. Instead of having chemo tomorrow though it sounds like I will instead be having a blood drawl from my power port and then most likely be given a shot called Neupogen to stimulate a rapid increase in my white blood counts. From a few different nurses here they say it really works well but causes quite a bit of bone pain for a few days. Great, just what I needed to hear. They told this to the person that sees a needle and almost passes out. Can't be anything compared to the two bone marrow biopsies I've had done though. If only they could give it to me thru my port...haha, now that's an idea! : ) Hopefully this will work good and give me some energy back. Friday nights are always my best day it seems, and then it seems like the rest of the weekend is kinda rough on me and just seems like from having treatment all week that then is when it all catches up to me.

 The neuropathy in my hands and feet has been especially bad this week. All that seems to really help with it are ice packs. As soon as I lay down I put an ice bag on my feet. Definitely helps with the tingling and burning sensation. Then I'll sleep all night with it. I love this ice bag so much that Justin found a few more just like it and ordered them for me offline.

I have about a half hour left and then heading home. Hopefully before the rain starts...


   Kim

Finally...A Post.

   I've been wanting to sit down and do this for quite awhile now. Actually, since I was initially diagnosed on December 8, 2010. The day I felt like my entire world came crashing down on me. There are so many things I cannot remember from that time that I feel like I am purposely blocking out because of all the "scary" memories that came with it all. I still to this day don't remember every single procedure I went thru while in the hospital. I know someday though I will want to look back on things and somedays I know I won't want anything to do with any of this. I definitely have my rough days but it's expected and I know that. This blog is for me to let out my thoughts, fears, and frustrations.

Right now I am sitting in bed with my laptop and telling myself I need to get to sleep. I've had a long day and definitely feeling drained. I met with my nurse practioner and she was very pleased at how well I am handling all of this. She said my hemoglobin and white counts have dropped but it is completely expected at this point. I had chemo today and it lasted 2 1/2 hours. Laura Hertz did mention she talked to my oncologist, Dr. Vukov (whom are both great and make me feel very comfortable!), and he said he wants me back in on Friday morning for a cbc to check my counts and might hold off chemo that day and just give me a shot to increase my white count. Tomorrow will be another long day of chemo, about 3 hours is expected. With my counts dropping I'm so nervous about getting sick, I definitely am catching every little thing right now which is also totally expected. A mask, Dial soap, and Purell seem to be very close by me at all times right now. : )

I'm taking this all one day at a time. I have rough days where I want to stay in bed and cry and feel sorry for myself. But I cannot. I have so many people that need me and love me and I know that. I need to be strong and I know I AM strong. I'm in remission and that is what matters!

 That's all for tonight. Off to bed.