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.

Overwhelmed

     I just feel so overwhelmed right now.


I'm about to try and wind down a bit and watch Big Brother with Justin and I'll post more later on tonight about everything going on.

Just a quick update...

     Being on this steroid is making sleep very difficult for me. I feel so exhausted. But that could also be part due to my counts being low. I go in tomorrow at noon to have blood drawn and then will possibly go to Methodist for the type and cross. If I need blood and platelets than I'll most likely have them given on Wednesday. I put the kids down for naps earlier and was hoping to sleep for a bit myself and couldn't, so I just got back up and worked on laundry.

I know this is a bit off track here - but this morning Aly and I made fresh blueberry and chocolate chip muffins and both kids just loved them. I love how Aly is getting to the age where she wants to help out more and more. These things make me smile.

This heat. Oh my heatwave. I am SO ready for Fall! My favorite time of year, going to the pumpkin patch, drinking apple cider, and being able to spend time outdoors without sweating our butts off.

I know my last post was about me starting to lose my hair, again, and feeling down about it. I was just hoping so badly I wouldn't lose it again. But I was told I would and so I think I somewhat had myself mentally prepared for it. I guess as much as you can, right? It's definitely still thinning out quite a bit. If I run my fingers thru my hair it just comes out. I'm trying to be strong. And I keep telling myself it's hair. Just hair. What really matters is that I'm in remission. That's all that truly matters.

The kids are waking up from naptime and I'm going to try and come up with an idea for dinner. I'm craving ham so bad for some reason. I've been craving it actually since Easter - I just haven't made one.

Aly is in such a good mood. Her laughter is just contagious and making me feel so happy.  : )



Will update more tomorrow.


Love, Kim