difficult recovery

Hey everyone- I am back. It has been a difficult few weeks. I have been sleeping a lot (ya right, difficult you say), but I get tired so easily it is frustrating. Especially in the morning, it is difficult for me to get up and going.

I feel like I am confined to my hospital bed, in my room. I can't help even less than before. I finally yesterday walked down the stairs holding onto my dad's arm and doug monitoring so I didn't fall. I barely made it back up the stairs later, that was a feit. I did get out to enjoy the sun and warm a little while, which was great.

I have my nephrostomy tubes (for urine) on either side of my body, the dressings for that on my back with my epidural on my back as well. I have the g tube hanging from my front left side which I have to hook up to a suction machine when I feel full or like i am about to throw up. Then there are the ostomies, the colostomy which only requires a small dressing but I have had some problems with it lately. Then my active ileostomy which requires the full ostomy dressing. After my last hospital admission, I had so much swelling in my legs from my feet to my pelvis. It now only remains in the pelvis area which we are unsure if that is tumor or not.

I feel like I am losing my relationship with my daughter, I can't help her. She does come sit with me in my bed to watch a cartoon, read a book or occasionally I will get on the floor to do a puzzle or play candyland. I still get to see her as she is growing so independent, beautiful and smart. I still get a morning hug and kiss and an evening kiss but my time with her has gotten much more limited and that makes me so sad. I am trying to get things done for her, a journal, video, something for her to remember me by, it is difficult though.

I am starting to get better, to the point where I may be able to have more visitors. I know that I have had a few people who have called but it hasn't been the right time yet. I am just getting strong enough now to have visitors more. It's just hard to know when, I never know when I am going to feel good or not. I fly by the seat of my pants these days! I hope all of you out there haven't given up on me. I need to go read all my comments. My computer hasn't worked the last couple of days when I finally felt well enough to get back on.

So this is a glimpse into my life right now. It has been very mentally difficult to go through, many emotions not only with me. Thank you all for your continuous support you give my family. I believe it is getting closer to the end of this journey and we are going into it blindly, trying not to fear but to give up our control and take it day by day.

Take car everyone. Thank you all who have helped us with Ella, meals, etc. My parents have especially gone out of their way to drop everything and help us almost every spare moment they have. love you all. Shawndra

long nails suck sometimes....

Like this. I can barely write now. My nails have grown so since I have been off chemo, I wish my boobs grew with then. Sorry it has been so long, lots has been happening, as you can imagine. I am tucked into my hospital bed at home near our bed,just a few bodies apart.ugh. I feel like a prisoner, I have to hook atleast two tubes to the bed everynight. lots of changing dressings on wounds,taking care of my port-a-cath and pic line. I know this is overwhelming for those of you not medical.
The first few days home I was pretty out of it, sleeping a lot. I finally came around about Wednesday I believe. A lot of this is hazzy! I am weak, weaker than I have ever been since a surgery! That shocked me. I am getting stronger but I still can't just get up and go somewhere, I have to have help. And the stairs,yikes two guys have to firefighter training lift me like my sister the fabulous, all knowing Physical Therapist taught us. Thanks dre!. So this is my life at the moment.
I haven't had the chance to read my email,actually I'm kind of scared to see how many there are. Thank you all for your support. Thank you to the neighborhood for the blue ribbons on all entrance trees! You all amaze me more and more every day.

As you all now I am probably reaching the end of this battle. I continue to get stronger and still doing most of what I can to continue to be here with you all. I know a lot of people have contacted my immediately family to find a time to come and see me. I am overwhelmed with outpouring of love. I need to take control of it because it is getting too hard for everyone. So to try to get this organized I would appreciate if you would call ME, not my husband, my parents or my sister. I am going to try to be in control of this one. I will give you all my information and we can make plans.

Phone number 913-226-0171 (If I don't answer I will get back to you, and please don't abuse this number)

Email: shawndrab@hotmail.com (I am overwhelmed with them so phone might be easier)
Thank you for all your patience, trust me I am just regaining the happenings in my world and what has happened these past several weeks/months. I have missed you and look forward to hearing from you!
shawndra

Home at Last

-- Tuesday Evening --
After a long three week stay at St. Josephs Hospital, we're home at last. As an anonymous commentor mentioned, her care is now in the hands of KC Hospice, although the immediate family is still very much involved in the day-to-day activities. Today, Misty, an RN from KC Hospice, spent approximately three hours with us, doing all the things Shawndra needs. There are so many tubes now, that it can be overwhelming. I'm happy to say that her pain is under control, enough so that she walked from our bedroom to Ella's playroom and back this afternoon.

A lot of people complain about health insurance premiums. Perhaps some of that is warranted, but one thing to remember is, when something devastating happens to a family member, like it has for Shawndra, the coverage is there when you need it. I cannot give enough praise to Blue Cross Blue Shield of Texas. Not once has a claim been denied. And, although private nursing is not offered as part of the health insurance policy, the company has approved 40 hours this week, for a private nurse to help us. That's in addition to hospice. We're blessed.

Since this is Mommy's first day home, in a long time, Ella decided she didn't want to go to daycare/school this morning. She was a good girl for her grandmother and me.

-- Wednesday Evening --
Sorry, I didn't have a chance to finish this post last night. Today Shawndra slept until 4PM. It's now almost 7PM. Three hours is a long time for her to be awake, we're all cherishing it. Gary (Shawndra's father) and I moved furniture in the master bedroom to accomodate the hospital bed. This bed is much more condusive for when Shawndra is sleeping and awake, since it moves in a lot of different ways. Currently, Ella is lying between Shawndra's legs, watching Scooby Doo.

A few of the "Lake House Ladies" surprised Shawndra with stories of receiving tattoos of butterflies on their ankles (to honor Shawndra). This past Saturday, I met three ladies at Irezuma's to videotape the event. There was laughter, grins of pain, but all in all, an enjoyable, especially bonding experience. I too was tattooed on the shoulder, but with a custom design, created by Mark (at Irezuma). This was a rather impromtu decision. Like Mark said, every tattoo has a story behind it. I'll explain more of the symbolism my tattoo has on another day. (And, yes, a photo. Perhaps even a video.)

Well, it's time to prepare Shawndra's evening "cocktail" as we call it. Thank you for your prayers. As far as visits are concerned, yes, she welcomes them, but please call well in advance so we can plan for it. We are also considering the idea of having set times on certain days for "open house" visiting. That may work better. What say all of you?

Good night, all. I'm anxious to get some REM sleep tonight. This brain of mine isn't firing on all cylinders right now...
- Doug