2/28/09 & 3/1/09

Maybe some of you are wondering where I am? Oh trust me, I'm still here. Just as sad as ever, some times more than others. I can appear fine when I am not- when I am dying on the inside- screaming and no one notices- smiling while fighting the tears- and all of that. But, I can actually feel some bits and pieces of happiness every now and then. I can smile and mean it. I can appear ok and actually be ok, although, most of the time this just isn't true.

If you all want to know some stuff that's been on my mind- I'll share. I'm actually feeling some anger again. Oh, the wonderful ride of grief!

Not that long ago, I ran into someone in the store who I had actually been trying to avoid. I had Zane and Kadee both with me and this person knew how much I had wanted nothing more than to be at home with them. Thanks to Cody and how everything worked out for us, I had been able to do this...Well, I can tell how people get so awkward around me and don't really know what to do or say and so what came out of her mouth was along the lines of her being so happy for me because I was getting to do what I always wanted to do. I knew that surely she didn't mean what she actually said or maybe she did, but the timing was horrible and how could you even say such a thing now? I, of course, smiled and went on my way. I wanted to make sure I wasn't the only one taking it wrong, so I shared with someone else what had taken place and they said, "Right, like losing your husband and being a single mom is what you always wanted!"

More recently, I ran into someone who told me how well I looked! It wasn't like a great compliment because there was some shock in this person's voice- just almost couldn't believe how well I looked and I took it as though she expected me to look different? Worse? There have also been those that comment on how busy the kids probably keep me and how that helps. Helps?

I have finished some more books. I read, thanks to a friend, 90 Minutes in Heaven. I finished A Grief Observed last night and also read Good Grief last night. I have about 10 more books on hand to go through...

Last week, this I didn't share at the time, but in between my counseling appt and my dr appt, in the waiting room, there were 2 couples. First though, let me give you a visual. (or try to) There is 3 walls... 2 chairs up against one wall, a small table in the corner with magazines on it, 2 chairs against that other wall. Then on the other wall by itself, there is two chairs with a little table in between them with magazines.

How convenient that I sat in the single chair that had the table in between that one and the other one? Then the couples of course, sat together. At first, I just tried to mind my own business. I looked at the board on the wall with different fliers... I played with my phone... I looked through my purse, digging around, in search of nothing... then, I couldn't help but watch.

The one couple was both each reading books. They would visit here and there... smile... look in each others eyes... They were in love. They had it! There was definitely a special bond between them. The woman started sharing some interesting stuff she had came across in her book. She offered to share her apple with him- how good it was! He tried it, wasn't as impressed, so she put it away : )

The other couple... he was picking her out magazines that he thought she would like to read. She was flipping through one and then they started discussing a recipe that looked really good! She got done looking at that one, so he offered to pick her out another one and she told him yes... so he carefully turned through them all to find just the one she might like. Then he found it and said, I think you'll like this one with a smile on his face. I must have been staring! He looked at me... then when I realized, I looked away... but not for long because I wanted to see more. After a little while, he noticed me again and I just smiled at him.

I was so happy for these couples while it ripped my heart out! That's what I miss. That's what I want. I think that's something we all need. Love. Tears had filled my eyes and I couldn't hardly see through the blur any more... I actually think that one time the man looked at me, he noticed... I was able to brush them away and keep it together, again.

One of my friends have seen I think two different guys that looked like Cody, since his death. My mom just seen one Friday night... weird, too. Out of nowhere and on a dirt bike... in her driveway... turning around to go back the other way... with dark curly hair... same build... and a t-shirt similar to those Cody wore sometimes. She was in shock. I'm sure I would've been, too.

My mom and I talked a (very) little about September earlier today. I tried to share it with one of my friends tonight on the phone and I couldn't even hardly get started and then started to cry. I fought to get through it because it was something I wanted to go on and share, but it was almost too painful to. That is why September is so hard for me! I just don't know if I can go back there...

We are all grieving. Whether we want to or not. Of course no one wants to feel pain, but it's there and there's nothing you can do about it, but try to get through it somehow. I know that many are trying to protect me and not share these stories and feelings and tears around me, but it doesn't matter. I live it day in and day out anyway. It would be better for me if I didn't feel so alone... I know how much Cody was loved and by so many and I know how much it hurts that he's not here. No one needs to compare their pain of his loss to mine. Of course it isn't the same, but it is still pain nonetheless. We miss him. Our lives will never be the same. And that doesn't have to be a "bad thing" because our lives can become even much more so because of ever having Cody be such a big part of ours while he was...

I just don't know. There's so much I don't know... I don't understand!

I am being tested in so many ways.

I'm angry that he is dead! He just wanted to be home more than anything. By the time things were so bad, I could not bring him here. He would've preferred to die at home than there, probably anywhere but there! We didn't know he was going to die. We didn't expect him to die. And I know he would've rather the leukemia kill him than the treatments. It's like all of our worse fears came true. It's like we knew, but what could we do about it?

Here is the journaling I kept of 2/28/09 that I haven't shared before. I just posted about us making it home on blog, but not all of the details. Here it is:

Saturday 2/28/09 (6 months ago on the 28th, a Thursday, this nightmare had started!)

6:15 am- New IV bag, meds, lab
Can platelets come up on own? Yes, that's what the Vitamin K is for. (will transfuse if below 10,000 or actively bleeding)
7:05 am- Vitals BP: 135/86 Oxygen: 92 Temp: 99.9
9:00 am- Cody buzzed nurse about 8:30- wondering about Dr? He was ready to go home at 8:00. Nurse checked out rash because it's getting worse- on stomach, back and both arms now. Her opinion- reaction to meds? Cody is ready to go home! He is a little impatient. Nurse said to wait until 1:00 or 2:00, then get impatient, it's too early for that right now : )
9:15 am- Cody called Shannon.
9:45 am- Oncologist!
Platelets 11,000
WBC, RBC- low, but ok
Red rash could be effect from chemo & ATRA
Cody can go home!
He is in better spirits at home. He is ready to see Zane and Kadee.
Clotting factor, Fibrinogen- low when came in, better now- went up since starting treatments
Sending home an antibiotic in case fever comes back.
Cody needs to stay well hydrated.
He's done with the allopurinol.
Will take day by day.
Will probably need transfusion by Monday. (outpatient for transfusion)
Will continue ATRA at home for 4 more day, 5 total. (last time it was 5 pills twice a day for 10 days)
Will take Men's One A Day multivitamin for enough Vitamin K which helps clotting, platelets.
Will only take Nexium, Levothroxine, Vitamin, ATRA at home.
10:00 am- Shannon called back
10:35 am- Breaking out in red splotchy stuff all over face again. He's resting.
10:45 am- Just waiting... excited about going home!
11:25 am- Waiting on Heprin flush from pharmacy for PICC line so we can leave. Signed papers. Getting copy of lab. Called and got an appt.
11:30 am- ATRA, Celexa (depression), Flagyl (yeast)
Still waiting. Hopefully soon. (Note to self: 11:30 pm- more ATRA)
Noon- Vitals Temp: 100.8 BP: 120/86 Oxygen: 94 Pulse: 111
12:30 pm- Connie called : )
12:35 pm- Still waiting on flush. Nurse having trouble with pharmacy. Patience being tested. Cody is just so ready to go home. Hopefully soon.
1:00 pm- Cody out of bed. Accident- diarrhea. Headed to the bathroom. Grouchy- ready to be unhooked from pole!
1:10 pm- Cody's lip bleeding. He picked off dry skin. He's trying to get it stopped.
1:20 pm- Nurse here. Has Heprin flush. Aide going to get wheelchair.
1:35 pm- Can't find a big enough wheelchair. Cody decided to try to walk to leave. He's getting very sick. Vomiting horribly. Nurse gave him something through IV.
WE FINALLY GOT OUT OF THERE!
At home:
4:50 pm- temp: 101.3
5:15 pm- Phenegran
5:40 pm- temp: 101.1
6:20 pm- temp: 100.4
7:30 pm- temp: 98.8 It broke- he's very sweaty
8:40 pm- temp: 98.9
11:30 pm- temp: 99.4

(I'll go on and share 3/1, since it all runs together...)

Sunday, 3/1/09

6:30 am- 100.8
6:45 am- 101.7
7:30 am- 101.8
8:30 am- 100.8
9:00 am- 97.8
11:15 am- 99.5
12:20 pm- 102.3
1:20 pm- 99.7

10:00 am- Sore in ear. Up out of bed. Hungry. Cody ate breakfast. Still has appetite.
I noticed spots in both ears, bleeding. Called Highlands. Dr. R returned call.
Then, noticed PICC line bleeding. Fever at 102.3 at 12:20.
Called Shannon. She returned call- got in touch with Cody's oncologist. Concerned it could be reaction to ATRA. May put ATRA on hold or skip tonight's dose. Will get platelets and blood if needed on Monday. (tomorrow)
Headed to hospital around 2:00. Cody very thirsty! Stopped by Sonic for water. Still very thirsty after drinking.
Got admitted quickly.
3:00 pm- Up in room. Waiting. Cody walked- didn't want wheelchair. He is very pale. Ears are not bleeding at the moment- dried blood. Cody doesn't feel good at all!
3:05 pm- BP: ok Oxygen: ok Temp: 100.2
3:25 pm- Lab
3:35 pm- Off for chest x-rays
3:50 pm- He's back from x-ray. Has a very dry mouth.
Wanting someone to help him... He won't come out and say it, but he feels like before, like he's dying. But, when you're so low on blood, you would and the nurse took so much earlier, it was like watching them drain the life out of him all over again! He's so tired!
4:30 pm- Starting IV fluids and Vancomycin.
Will run through more antibiotics later.
Cody off to the bathroom.
Neutropenic- WBC 1.0
Hemoglobin- 9.6 (Nurse said they usually transfuse at 8)
Platelets- 16,000
Lab tech will come by to try to draw blood for cultures. Earlier it was taken from PICC.
5:00 pm- Brought supper tray to Cody, but he doesn't even have a bedside table/tray in here- nurse looking for one (He's not too upset- he doesn't want the food anyway)
5:35 pm- Stopped IV's for about 10-15 min. Can draw again from PICC, instead of a "stick". Vitamin K.
7:00 pm- Levaquin
Darrell and Lenora came and ate with us. They brought us Taco Bueno. (Cody's request) Cody's stomach started cramping... Side effect of antibiotics? or too much taco in your bueno? : )
9:30 pm- Temp: 99.5
9:45 pm- Zosyn
Will repeat antibiotics throughout night.

Okay, I'll share the next day another time, if I haven't already blogged it.

My chest pains have gotten so much better. It seems like that couple nights of good sleep I got really helped. I know I need more than just two night's of good sleep. It's 11:30 pm now... I need to try to get some rest tonight... I hope everyone had a nice Mother's Day.

Cody,
It's not easy going back through these days... recalling all of it. It's not like I don't do it anyway, but not every little detail. I think my mind just gives me some little pieces at a time. I don't get much of September at all and I know that you seen me shed many, many tears over all of that. You wanted to protect us. You didn't want us to ever have to go through that again, see you that way... I told you that I never wanted YOU to have to go through that again. You were such a kind person. I always knew you had such a good heart. A big heart! Full of love. I know how much you wanted a family and even though for a brief time, I'm glad you got it! I know how much you loved us! Everyone is missing you so bad. I can't get over even as sick as you were, you always made sure that all of us around you were comfortable. You had no problem asking for extra chairs when you knew we were going to have extra visitors or making sure I had a comfy place to sleep instead of that 10-second chair : ) You are constantly on my mind. I'm trying to figure parts of life out and maybe I don't even need to worry about it. I guess it'll all just have to take care of itself. Life. It doesn't seem like much of one without you. This all sucks. Everyone agrees. It sucks! We wish you were still here- healthy. It's hard to deal with just because we had some of the most amazing times of our lives, in the months after September, as short of time as that was...it has a big impact! I went from you being ok on the 6th and having our family time together and leaving with plans of bringing the kids back the next day... to you warning me by phone of what you thought was to come and then it all coming true and me losing you in such a short time later. We didn't go in this thing thinking you weren't coming home with us... that's all you wanted the whole time. I know at the end though, you knew... and you were ready for home- home.... but even knowing all that I know doesn't seem to make this much easier for me. This pain is just such a deep pain. It feels like I will be this way forever... but I know this isn't so. Couldn't be. Or I will die from grief!- from a broken heart! But, I know this isn't what you would want to happen... you want me to live! I just have to figure out how...
I love you. 1-2-3-4!
Fi