Friday, September 23, 2011
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.
Wednesday, September 21, 2011
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
Thursday, September 15, 2011
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! : )
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.
Tuesday, September 13, 2011
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.
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.
Saturday, September 10, 2011
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
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
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