Change is Inevitable

I decided today that since I had not heard from Kim I would just go to see her. I ate dinner with my family, helped get baths going and my husband took over from there. I got into the car and all I could think about was getting there.

I drove down the curvy drive way to the hospice and as I was pulling into a parking stall, I saw her sitting in a wheel chair in the sun room. A small wave of relief washed over me. I figured...ok....she got some help getting there. Totally understandable. I shut off the car and walked to the door. I noticed another car coming in as I crosssed the small parking lot. I recognized him immdiately....Kim's brother. I waited for him to catch up to me and we walked in. The nurse spoke to both of us right away.

She said that Kim is no longer allowed to get up and walk around on her own. She must be escorted at all times. She can go for car rides, but is not allowed to get out of the car anymore. Kim realized it must be taking her brother and I a bit to long to find her so she called out, "I am in here guys." We walked in and she was obviously a little upset. I immediately noticed that some of her teeth had broken off...a terrible side effect from all of the chemotherapy drugs. She said, "Great...now what am I supposed to do?"

I asked, "About what?"

K:"Both of you are here now and I didn't think I had to people coming at the same time. I screwed up again!"

Me: "Kim...it's no big deal. I came unannounced. If you had other plans, it's fine. I just had not heard from you so I wanted to come and see how you were." I could tell this answer was not going to satisfy her. I felt like I was in a no win situation. Not come, and not know how she was or what was going on, or risk coming and upsetting her. I guess I achieved the later of the two.

Her brother said they were going to go for a car ride so she could have a cigarette and that I was welcome to come along. I decided I would. The nurse helped Kim to get into the car and I sat down behind her in the back seat. Her brother was talking to the nurse and Kim said "hey! knock it off! I am right here".

I asked her, "Kim what is wrong?"

K: "I know they are talking about me. I HATE that. I am sitting right here. It is rude."

Me: "Kim, the nurse is just telling your brother that she will help us get you back in when we get back."

K: "oh......."

As her brother began to drive, the details of the week came out. She now has a bed alarm, needs help with getting up and moving around at all times, and she has drastic mood swings that make it difficult for her to calm down. Evidently her mental state has not been very good the last three to four days. Every once in a while she would sort of trail off mid sentence and neither her brother nor I had any idea what she was talking about. It is almost like she was mixing the past and present tense together. We just let it pass in the conversation as normal.

We got back to the hospice facility and got her to her room...helped her into bed. She can't boost herself up in bed anymore so her brother and I helped. Her body is so tiny and frail. The nurse came in to give her a bolus of her pain medication since she had been off her pump for a bit. Her brother and I talked with her for about a half an hour and it was then obvious she was rather tired. I gave her a hug and a kiss on the forehead....told her I loved her and left.

Her brother and I walked out together. I didn't want to start crying before I made it outside, but it just didn't happen. I said to her brother, "you know this just sucks." He said, "she's got time yet." My response, "I know.....but watching her go through this...". Neither one of us said anything. I asked him to keep me posted on how she is doing if anything else should change for the worse. He said he would.

I got into my car and started bawling. The one measly tissue I grabbed from the nurse's station was not going to be enough....I just used the back of my hand and wiped my tears on my jeans. The 'low gas' buzz came on and all I could think was that I didn't care and if I had to walk home because I didn't stop before I came, I couldn't have cared less.

I want to scream I am so angry! If she has to loose her life to this battle...fine. If she can't be there for her daughters growing up....fine. But why does this have to be such a drawn out and unforgiving process?? Why does she have to be aware of everything that is happening to her? Can't God just say, enough is enough! Come to heaven and be at peace. Why does it have to be THIS way? Where is the mercy? Full throttle tears erupted from my eyes and burned down my cheeks. I just let it out...plain and simple. I am tired of holding it in and being composed and all that nonsense. An emotional tidal wave came out in an empty minivan.

About two miles from home I knew I had to pull it together. My boys were still awake and I didn't want them to see me upset. Thankfully it is dark out and their bedroom lights are off. Steadying my voice is easy enough. I walked into the house and the boys realized their Mama was home. I gave hugs, kisses, and a few snuggles.

I am so tired...not as tired as Kim, I am sure....I hope sleep finds me quickly tonight.

1...2...3

Kim's text messages seldom come anymore. I liked to wait for her to say it was ok to come, but I am begining to think that won't happen anymore. I don't know why I feel like I need courage to go and see her. She is my friend. Why should I need courage? It is less intimidating to walk into a meeting at work with some of the 'higher ups'.

I have taken to reading books about the meaning of life and people's near death experiences. I find them rather soothing to the soul...and I truely believe that there is something amazing on the other side of this life and that she will be free. And I am happy for her...grateful that true peace awaits her. But my heart is still sad and doesn't understand the 'why' of it all. I have come to know that is what my faith in God is all about...that I am not privy to the 'why' just yet. Some day...I will be...and not before God decides it is my turn to know. Faith...that word means so much more than it ever did before for me.

A long time ago, Kim told me that the hardest part of her in this journey is not knowing if she did everything she could to beat this cancer. There are no websites, foundations, etc for the very specific cancer she has. It is so rare. In an effort to help these people who are scattered throughout the world, I started a simple face book page in her honor: The Kimberly Ann Network: Clear Cell Sarcoma Information and Support. For many months, no one joined. I checked in faithfully, but admittedly so have not had the time to update and research as much as I would like.

This past week, two people affected by this horrible cancer have joined to make 3 of us. As sad as I am that there are people dealing with CCS, I am so happy to be working to provide a resource to people....to connect, to support, to share. If what Kim has gone through provides one single person with information that aides them in their battle, her life has been given so much more meaning despite it's end. The tremendous ability to give birth to a child is knowing that you gave life to someone...working through KAN gives all members the opportunity to share a life saving measure,test, medicine, support...over and over again in Kim's name....even though she will soon be gone.

I can NOT for the life of me think of a better way to honor my dear friend.

The Sun Begins to Set

It gets harder and harder every time to deny what is happening to my friend. Of course I know she is dying and she won't get better...but if she is having a good day, it is easier to pretend it isn't happening, to protect myself emotionally. Her face is getting thinner...temples more sunken in. Her jaw line is hard and her skin has a very washed out tone. Her wrists are so skinny and her fingers look so delicate. When she is sitting on the bed, she looks about 6 months pregnant...the cancer is ravaging her insides causing her belly to expand. She should be pregnant...not laying in a hospice bed. It is a cruel visual deception and another reminder of how this just isn't fair.

She tells me she is sleeping more and more...she dreams about her dad frequently. It's almost like you can watch her brain process each movement she is going to make. It is heart wrenching at times.

I usually bring our junky car to go see her. That way, we can walk out side and she can still have a cigarette. When we are sitting in the car talking, it almost feels normal. I park the car facing the random field to the east of the building. We talk about whatever comes to mind.

We walk back to her room and she lays back in her bed. She drifts off and then comes back again. The bolus dose of medication she got is making her sleepy. We talk a bit more and she says to me, "I don't remember the last time I saw my babies." It is hard for her to keep the days straight. She calls her exhusband and asks her to bring them for a visit.

I know I can't stay and watch her with her girls. It is just too much for me. I stay for a few more moments and then I let her know I have to be getting home. I give her a hug and a kiss....tell her I love her. As I am walking out to my car, I see her daughters. They are eating icecream on a hot summer day. I get into my car and watch them go in....it's just not right.

I start the car and head home as the sun begins to set.