He's a fighter

So after an intense visit to the ER, Ben was intubated and moved to Children's hospital. Ken spent the day with him and he is doing much better. We suspect that after days of having the flu, he just couldn't keep his anti seizure meds in. Plus, when he gets a high fever a seizure usually follows. He was just exhausted and deyhydrated too. The good news is that he was taken off all sedation meds this evening. I went to make a quick visit tonight. When I talked to him he opened his eyes. That sweet boy! I spent awhile talking to him, and he would try so hard to open his eyes. Finally I said, "Show me what Ben wants." That cute little guy lifted his arm for the first time and pointed straight to my face. I wanted to cry. He definitely understood what I was saying. When he wakes up more fully they will remove the breathing tube. He is my rock!

My little Peanut

My sweet boy

My sweet boy had some seizures this morning. Looks like the fevers and flu got the best of him. After 20 min we called the ambulance. He is in the ER being taken care of. The seizure lasted nearly an hour. Poor little guy. I love him so much.

Twenty Eight is Great!!

28 more days till my last treatment.... Let's do a dance!!

Casting call

Finally some good news. I got casted for my leg! I have chemo all next week while they are building my leg. The following week I will go for my next fitting to see if anything needs adjusting. Then it will be another week until the final leg is done. I have had a little bet going (with myself) to see if  I will be able to actually walk in to my last chemo appointment. It is too close to call yet.

Better skip the garnish

Here is my free information on what Neutropenic means. About 10-14 days after your first dose of chemo is when your white blood count is at its lowest. This is when your body is most in danger of developing a fever from any bacteria or infection that you are exposed to. So for those days I have been good to stay at home and not go out to public places. I don't let my friends come over, or the kids' friends. I wear a mask when the kids are home and Kenneth has even slept on the couch so I am not in personal contact with anyone. Well, even with all our precautions some germ got in my system and I got a fever and that is why I ended up in the hospital after the last two rounds. But here is my interesting fact. When I would get my food in the hospital it was always stamped with "Neutropenic Diet. No Garnish". So, of course I had to ask the nurse what was wrong with the garnish.
Any guesses?? ........

 I can't eat anything Fresh. That means no salads, no fresh vegetables, no fruit, no raw nuts, and no raw meat (not a problem with that one). What???? I have been trying to eat as healthy as I can and that included lots of fresh fruit and vegies. I was very proud of myself actually at how good I was eating. What the heck?? Well, since fresh produce can contain trace amounts of bacteria, it is a risk to eat it. I wish someone would have mentioned that. Oh, perhaps I should have gone to the "Getting ready for Chemotherapy" class I opted out of. (I didn't want to sit though a whole class telling me how I was going to practically be poisoned to death for the next 3 months). Oops.
So lets hear it for overcooked and processed foods!

Home sweet Home

Finally!! I am home again! Spent the last 4 days in the hospital again. I got a bad cough Wednesday night at by 3am was running a fever. We went down to the hospital and checked into the ER. It was the worst experience I have ever had at the ER. Enough said. I was admitted back to the oncology floor for observation..aka isolation. They pumped me full of antibiotics for 4 days to kill whatever germ was floating around inside of me. My white blood count was down to 0.2 this time. Pretty low for my body to fight any infection. It was really no fun to be there but I am glad that they are keeping me alive to live through the chemo treatments. As of tomorrow it is only 5 more weeks till I am done with it all. Sounds easy but I have to just take it day by day now and just survive. This is getting exhausting.

Smooth

I have felt so run down and sick this week. I have kept myself isolated at home since these are the days my immune system is so low. I'm trying to learn from having to be hospitalized last round at this same time. Since I feel pretty gross, I decided maybe I would take a hot shower and shave my legs. That always helps you feel better, right?. This is when I found the only good side effect of chemo yet. Since shaving my legs 3 weeks ago, it hasn't grown back! Nice.

Very round

Today Kenneth was rubbing my my head (without my hat) and said, "You have the most perfectly round head of anyone I've seen." Now I'm sure he is comparing me to the bald men he has seen in his life because I am pretty sure he hasn't looked at too many bald women. But regardless, is there a difference when it comes to bald heads? I don't think so. So I am taking that compliment! Now, I would like to thank my mother at this time for molding my infant head into a nice shape. As I was preparing myself to lose my hair my mom said, "You should have a nice round head. I made sure I kept turning you from side to side when you were a baby so you would never have a flat spot on your head." Thanks mom!! You thought of everything!

Sunshine and Huevos

I lived through the weekend and was happy to see the sunrise this morning and have that weekend over with. Our beautiful sunny weather has been a hazard for me. It is probably only 80 at the most but it feels like 100 degrees when you have chemo drugs flushing their way out of you. Icky! I decided that having cancer treatments through the winter is much better than the summer. I am seriously thankful not to be doing this in the summer. And I am so thankful to be over the hump. More than half done now.

Although I continue my love affair with Pei Wei soup, I have found a new food that is so delicious. I can't get enough of it. Let's hear it for eggs over easy with pepper and lawry's salt on top. There is something about the drippy yolk that has me hooked.

Round 3 Finished!!!

I got through the 4 days of chemo. I was talking to one of the nurses telling her that sometimes I just break down and cry and I feel like such a wimp. She told me that when I was a new patient and she looked over my schedule of meds, she said a prayer for me because it is a tough cycle. I guess I am allowed to cry a bit. So now that I am done, I have the worst two days to look forward to. Saturday will feel like I am dying and Sunday is a close second. I have nightmares both nights so I am going to try to stay awake watching anything to take my mind off it.I am very thankful that my worst days happen on the weekend.It is a very hot day here today. What's going on with that? I got my leg measured again yesterday and got the process rolling for a new foot. A few more weeks to go still for it to be built.Now it is like a race to see if I will finish chemo or get a leg first. Didn't expect that to happen. I think I am most definately rambling on. I will check in when I am out of my dark days.

Round 3 started. -Day one finished

The first day is not so bad. I went in with enthusiasm, ready to get it done. But I know I will feel progressively worse until Friday. I started a good book this time. I like to read suspense or mystery novels. All my friends read historical type fiction. It is too depressing to me to read about real life hardships like war or death or abuse and stuff. So I am stuck. I can't read my murder mysteries because it is too much to handle. Not soothing enough. But I don't want to read the historical stuff and be saddened by how bad life can be. I'm living my own sadness right now. So what do I read? I'm open to suggestions. A friend of mine dropped a book off last night called "The Help". I started reading it today and got through hundred pages. I like it so far. I am told that it won't have a big ''bomb' drop at the end that all the characters die or something. I know I will do lots of crying along with it. I cry alot during these days of chemo. Everything hurts and I get so weak I can hardly move. Day and nights seem endless. I feel like this round my kids have figured out my cycle and they are adapting to it easier. They are a blessing.
Oh, I went yesterday to see my prosthetic doc to finally get measured. And wouldn't you know it, my leg was swollen. What?? Then I remembered the night before I got up off the couch and put my invisible foot down and banged my stubby leg kinda hard. Maybe it swelled. So I have to wait a few days to see if the swelling goes down. What a disappointment! Tomorrow makes 3 months without a leg. I really miss my leg. A lot.

A masterpiece

Charlotte came home from church today and excitedly gave me her handout from Primary class. They learned how we have a body and a spirit. She had a clear cutout that represented the spirit and another cutout that she colored to look like her body. She said, " Mom, this is for you. It was actually supposed to me but one of the legs fell off so now it is you." Funny thing was that it was the right leg and it came off the body cutout, just like me.

Notice my body has one leg but my spirit is still perfect with two!

Back to the Urgent Care..

I made my third trip to the Urgent Care today. This time it was Courtney. She was wrestling with the same brother that collided with Ben the other day and wouldn't you know it... his knee made contact with her thumb and jammed it all up. When she woke up this morning she was still in a lot of pain so we went to the Urgent Care to make sure it wasn't broken. The nurse greeted me and said, "Back again? Well at least you are looking much better than the last time we saw you." This is true. I was. The good news is that it is just a sprain. Doctor said it will be sore for awhile.

I'm getting a leg!!

I saw my surgeon yesterday, the one who has been watching the progress of my leg wound. It is almost healed. The good news is it is close enough that I can get measured for my leg. Hooray!!!!
In honor of a fellow amputee, check out this blog. It cracks me up. Watch the little video and scroll down to see his previous posts. I find it amusing. Hope you get a good laugh too.
www.waveatthebus.blogspot.com

We are both still alive and still talking to each other.

We made it on our drive. We went in  the McDonalds drive-thru and then to Target. She did great! Just got really close to the passenger side curb and parked cars. We will try again after school tomorrow.

First time driving with mom

Driving Miss Kari

It's been a long time for her to wait but my daughter got her driving permit. She had her first behind the wheel yesterday and she is anxiously looking forward to coming home from school and driving with me. I am a bit scared. It feels weird that I don't have a foot myself, like I can do anything from the passenger seat anyway. So how far do I let her drive? No freeways for me yet. And no driving at night. Oh gosh. Only 2 hours till she gets home. Maybe I should medicate myself before we go???

She doesn't look like a bad driver.. right?

another trip to urgent care

Ben was playing with his brother and collided. The results were a busted lip and lots of bleeding. His mouth was bleeding and his nose was bleeding. Since Ben can't talk to tell me if he has more pain we always side with caution and I took him to the urgent care to get checked out. He was a mess and cried for a long time. The doctor checked him out and since they can't sew the inside of his lip there was not much to do for him. This morning he has a huge fat lip and a swollen nose. It looks a little crooked to me but we will wait until the swelling goes down. Poor little guy.  I love that kid!

Did they get the PICC line to work??

A few people have asked me if I finally got the PICC line to work or if the have to replace it. So here is the end of the story.
The doctor had cleared me to go home. My white blood counts had reached an acceptable level so I could go. After 2 doses of de-clotting medicine and 2 hours of trying and failing at getting the blood return, my nurse said,  "This is our last try and you will have to discuss with your doctor tomorrow if he wants you to pull the line and have another on placed." She attached the empty syringe and pulled it back. Nothing. She tried a few times. Nothing. So she left it attached while she went to inform the doctor. My mom was there to drive me home and I told her, "No way am I getting another line placed." So I proceeded to pull back the syringe myself to get a blood return. My mom said "Don't do that. She is going to catch you and you are going to get in trouble." I continued determined to get it to work. And then I screamed, "It worked!!!! I see blood!!" I buzzed the nurse and excitedly told her. She said "You rock! Now let's get you out of here." When she came in the room I told her that she couldn't bust me because she was the one who left the syringe attached so we would go down together for this. We were both happy and I was discharged to go home. Today the line worked perfectly. Small miracles are the best!

I need Marge

Marge is a nurse specializing in PICC lines. She works in the outpatient center but sometimes comes to the chemo suite. She can do it all. When I first met her was the day I got my PICC line placed in. I had spent 4 hours at the hospital for a 30 min procedure. This is when I passed out during the procedure and they had to start all over. It was just a mess. Well in the afternoon I met with my oncologist and told him my heart was fluttering. He ordered to have the line pulled back a bit. That is when I met Marge. She scared me. Kinda tough looking and stern. She looked at my x rays and said it looked just perfect but would do what the doctor ordered.  She scared me that day but I got the line repositioned and felt much better. I saw her again during last chemo round. My line was tough to get fluids to flush through so the nurse said, "I'm going to call Marge to come down and help." "No!" I protested. Surprisingly the nurse said "Why?" Well I couldn't say 'oh that is because she scares the crap out of me.' So I just said "Oh, I'm just nervous". Well Marge came down and worked her magic and my problems were solved. Now, I'm starting to like Marge a bit more. Maybe I just need to peel back her tough layers. Last week when I had a bandage change (every week I have to have the bandage changed around my PICC line), it was Marge who changed it. I asked her how she got interested in specializing in PICC lines because it is the last thing I would want to to. I'm a bit phobic about IV lines and stuff. She told me they were going to teach nurses to place the PICC lines and she was the only woman nurse to volunteer to learn. That is because they were practicing on the inmates and the men's prison. Oh my gosh! She spoke with love and concern for these inmates. And then I started to love Marge! She is tough! but she loves her job and works hard at it. This weekend at the hospital they couldn't get my PICC line to work. After hours of trying to de-clot it they were about to pull the line out and start a new one. All I could think was.. I NEED MARGE!!! I love her.

Are you going to read me my Miranda Rights too??

During the 3rd day of my hospital stay, a random nurse came in my room rather abruptly and started typing on the computer, She says to me that she just noticed that I was listed as a "Risk for Falling". She came over to my bed and said, " I have to set the alarm. If you need to get out of bed then call for a nurse." And then she started to leave. Are you joking me?? An alarm on my bed to keep me in it? "Wait"! I told her that I had been getting out of bed to use the bathroom for 3 days using a walker and no one had a problem before that. She said, "Have you ever fallen?" I replied no. She said " Have you fallen since you had your amputation. I told her only once, the first day. That was 3 months ago. She said, "Then you have a risk for falling." She told me that it was policy and she was sorry but she had to do it. I then told her that it would be a big hassle because with all the fluids they were giving me that I was in the bathroom alot. Oh and I have to dangle my feet off the side of the bed to get circulation to my legs so I would call her for that too. By the way, who is she anyway? I had never seen that nurse before. But for a brief moment, the thought of being locked in a bed was just too much. I told her that I would apologize now at how much I was going to be calling the nurse button for help. It worked! She finally gave in and said she would remove the "Risk" warning in the computer and took my alarm off my bed. I won over my freedom. At least in my little space.

Happy New Year from the hospital

I rang in the New Year from my hospital bed. It wasn't so bad really. At least that is what I told myself. All week I have felt like I had gotten sick on top of my chemo side effects. Plus a couple of the kids had sore throats and coughs. Well on Thursday my sore throat and cough were finally better and I thought I had beat it but I got the chills and the fever. After two call to the oncologist to verify that I really did have to go to the ER, we stopped by the urgent clinic to see if they could give me the IV antibiotics I was going to need or if we had to go to the germ infested ER. They ran by blood work and my white blood count was 0.6. Which means I basically had none. They immediately started me on 3 antibiotics and called an ambulance to drive me to the hospital. The hospital we use is downtown, about 45 min. Fun times. We didn't go with sirens, I just needed to be under medical care since I was already hooked up to the IV. The good news is that the oncology floor is all private rooms because of the germ passing factor. The nurses and all who enter my room wear masks. My door stayed shut for the 4 days I was there. I felt like I was in isolation. Oh wait... I was. I watched so much tv that my brain might pop. We don't have cable at our house so some of these shows were new to me. The highlights were...The Back to the Future trilogy, The Deadliest Catch, Ghost Hunters, Sister Wives (I watched 6 episodes), Say Yes to the Dress, and even Native fish of Thailand. I watched the ball drop on New Years Eve and the first person I wished a happy new year to was my night nurse, who was an older man nurse- awkward.