One More Birthday

Thursday I got done with my work early, so I asked my boss if I could leave early to go and spend time with Kim.  She said yes.  I quickly shut down my computer and headed out the door.

The wind was cool and it was cloudy out.  I could feel the tears already wanting to surface.  I got to my car and sat down inside...took a deep breath and started the car.  I had to make it through the grocery store at least without crying to pick up some flowers. 

I went straight to the floral department and began looking.  None of them seemed just right, but I settled on some fall colored flowers--two bunches--a green vase and a small happy birthday balloon.  I went to check out and headed home to change clothes.  I sent Kim a text message, knowing she wouldn't respond, that I would be there soon.

I came into the house and changed.  I re-read my last post and decided to print it off.  I knew it would be hard to read it to her, but I knew I wanted to try.  I grabbed it off the printer and headed out the door.

When I got to the hospice home, I signed in and again I could feel the tears just beneath the surface.  I quickly scanned the guest sign in log to see if there was anyone else who might be in her room.  There was one name with a sign in time of about 10am.  I figured they had forgot to sign out. 

I headed towards her room.  I turned the corner and down the hall I could already see her doorway was decorated with "Happy Birthday" decor.  As I approached her room, I could not hear any noises.  I walked into the door way and noticed no one was sitting in the room.  A few steps further and I could see Kim laying in bed dozing.  I glanced around the room and there were approximately 6 vases of all different types of flowers.  Cards were scattered amongst them. 

I set to work getting the flowers I had bought her in the vase with some water and was thinking about where to put them.  Kim's eyes opened and she looked at me.  I said, 'Happy Birthday honey' in a soft tone.  I don't think she immediately recognized me.  She had a sponge swab in her mouth.  She pulled it out and said 'Thanks.'  She dipped the sponge in the cup of water by her bed and began sucking on it.

I asked, 'Have you had alot of visitors?'
She said, 'yep.'
'Did your girls come by yet?'
'No...not yet.  I have to call and find out when they are coming. But my phone is a piece of shit and I haven't been able to get it to work right.'

I finished getting the flowers in the vase and decided on a spot by the window.  It was so hard to hear her as she was talking that I asked if I could sit on her bed by her.  She said yes.

'I can't get out of bed anymore by myself.  I have that monitor on again.  (the bed alarm).  I fell yesterday.  I was stuck on the floor because I couldn't reach the button for help.  So....I laid there and had to call out for help until someone heard me.  When they came to pick me up...the way they were doing it...it hurt me. I hurt everywhere.  I don't think they believe me because they can't see anything wrong.'

As you read that, rather quickly I am sure, imagine it taking you about 10 minutes to say that...in between swabbing your mouth with a sponge because your mouth is so dry your tounge sticks to the roof of your mouth....and not being able to speak very loudly and having to repeat parts of it. 

'Are you eating or drinking anything anymore?' I asked.
'No.' She said.

I knew this was not a good sign.  'Do you want to go and sit outside?  It isn't too cool out.'

She asked, 'Can we go for a ride?  I really want a cigarette.' 

'Sure.'  I said.  She asked the nurse to come in and disconnect her from her IV pump which continuously gives her pain medication.  The nurse then helped her get into her wheel chair.  As the nurse helped her, it dawned on me that Kim's pj pants were barely hanging on to her waist.  If her belly wasn't bloated from cancer, they probably would have fallen off. 

It is hard to type out how disjointed her conversation with me was.  She was having a hard time finishing thoughts and would have to restart her sentences several times....and sometimes not finishing them at all.  I would gently try to help her finish her thoughts.  The nurse and I helped her to finish up little things she wanted done before leaving the room like emptying out and throwing away her water cup, putting the bottled water back in her fridge, turning off the lights.  She had not done this before when we would leave.  I suspect it is her attempt to maintain control over anything she can and I am fine with that.  As far as I was concerned, I was at her beckon call.

I pulled the car up to the front door as close as I could and the nurse and I got her in the car.  We started on our trip.  I asked her if there was anywhere she wanted to go or anything she wanted to see.  She asked, 'Like what?'  I said, 'do you want to stop anywhere for anything special to drink, eat, anything like that?  Ice cream again?'.

'Yes....ice cream...that twist kind.'  She said.  I replied, 'I know where we can go.'

As we were driving and she started talking, it was almost impossible to keep up any sort of a conversation.  She was easily confused as to where we were going, what she was trying to say, or where we even were.  When we got to the drive thru to order ice cream, I ordered her ice cream first, then I ordered something for myself.  She began trying to shout, 'That's not right!  What are you doing?!'.  I explained in a soft tone, 'Kim, I already ordered yours.' 

'That's not what I want though!  I want twist.' She was upset.

'Kim...that was the first thing I ordered.  It is ok.' I said again trying to reassure her.

'Whatever...I am so fucked up.'  and she resigned herself and leaned back.

We finished in the drive thru and pulled over in the parking lot.  Two men driving Harley Davidson Motorcycles drove by and she waved.  She took a few licks off of her cone and said, 'I can't do anymore with this.'  I was glad I had asked for an empty dish...I knew she would not be able to finish it.

There was an extra spoon in the dish and as she tried to dump the cone over into the dish, she tried to get the spoon through the middle of the cone.  I wasn't sure what she was doing, so I said, 'Kim...what are you trying to do?'  She said, 'Well, isn't that what it is there for?  I am trying to get it on there.'  I said, 'Kim, that's a spoon.'  I moved it out of the dish and guided her hand to set the cone down.  She was obviously confused. 

The rest of the drive, this is how things went...not making sense and I got to the point where it was easier to not disagree or try to correct at all.  I would go along with what she was saying or doing to try to keep her from getting upset. 

It was hell.

Seeing her fall apart and loose herself slowly is one of the most heart wrenching things to see.  I remember months ago when I asked Kim to let me know when she thought it would be our last visit together.  What a ridiculous thing for me to ask of her.  Being a nurse myself and having seen people die, I should have known better.  I found myself getting angry again.  Movies romanticise death so much that when people don't have actors and music playing in the background as someone fades away, the contrast is shocking. 

After ice cream, I drove her around some more so she could have another cigarette.  She tried dialing her cell phone and was getting upset and started swearing.  I asked her to give it to me so I could see if I could get it to work.  I did without a problem.  She asked me to show her how I made it work, so I did.  She could not do the 3-4 steps and gave up.  It was too monumental of a task for her to do anymore. 

We were almost back to the hospice home and asked her gently, but directly, 'Kim...are you ready to die?'.  Without hesitation, she said 'No.  I made it through one of my daughter's birthdays, and I am going to make it through the other's.'  Her eldest daughters birthday is today, Saturday.  'I don't want to die on her birthday.  It is her day.  I don't want to ruin that.  Some people know when they are going to die.  I don't.  Maybe I will.  I don't know.'

One more birthday. As of today, she will have made it through one more set of birthdays.  I wonder now how long she will fight.

We arrived back at the hospice home and we got her back to her room.  I helped to get her into the bathroom and she insisted I not stay in the bathroom with her while she did her business.  I told her fine, but that as soon as she was done, she had to call me so I could get in there to help her.  She agreed.  I thought to myself, I will read her what I wrote as soon as she gets situated in bed again.  Just then, her older brother walked in.  Damn.

Kim called me back into the bathroom and I helped her back into bed.  Her older brother helped as well.  She asked me to do several things for her.  I more than happily obliged.  Get her a new water cup and put some cold water in it.  Put her phone in the right spot.  Help her get covered with her blankets, but move her legs for her first because it is hard for her to do it under the weight of three blankets.  Set her chap stick next to her magazines.  She looked at me and said, ' I am sorry for asking you to do all of this stuff.' 

I stopped and looked at her and said, 'there is NOTHING else I would rather be doing.'  Once everything was in its place, I sat down.  Her brother already knew better than to try and engage in long conversation.  I had been there a little over two hours and I knew more visitors were coming. 

'I have to get going sweetie.  And I want you to have a little rest time before your girls get here.'  Truthfully, it is more than I can handle to watch her girls be there with their dying mother.  Maybe that makes me weak.  Regardless, sitting there and crying while they visit is not okay. 

'Okay.  Thanks for coming.'  I stood up, hugged her fragile, failing body and kissed her fore head.

'Love  you.  Happy Birthday.'  A few tears found their way down my cheek.

'Love you too.' she said.

As I turned to leave, her brother stood up and told Kim he would be right back because he wanted to go and have a cigarette.  We walked down the hall and didn't say anything.  I signed out at the front desk and the nurse looked at me with eyes that told me so much even though she said nothing. 

The wind was cold and I didn't have a jacket.  I didn't mind.  It felt good. 

Her brother and I talked for a little bit. I asked if their mom had been out yet.  He told me she had been and that Kim spent most of the time yelling at her about something so she had to leave.  Kim called her mom about an hour after she had left and asked when she was coming to visit. 

I told him what she had said about not wanting to die on Saturday because of it being one of her daughter's birthdays.  We both agree that this is probably the last thing she is waiting for.

'I want her to let go.  It's not that I don't want her here, but I don't want her suffering anymore.'  The tears I had managed to keep back for hours finally broke free.  Neither one of us said much more after that. 

I got into my car and began to drive home. 

Anytime after I see her, I am utterly exhausted.  I do not physically do much when I am with her, but the emotional energy is incredible.  I do not mean that to sound negative in any way.  This is a unique experience for me...thank goodness...and I sometimes wonder if others have felt the same way. 

She is a shadow of who she once was.  I want to try one more time to see her, but every time I leave her, I wonder if it was my last.

Why NOT?

Tomorrow is Kim's birthday.  She will be 33.

I sent her brother a text message today asking if there was anything special going on tomorrow for her birthday.  He said he didn't know of anything going on.  This struck me. 

I was angry.  She is dying.  But she is still living.  Why NOT celebrate her life?  Does she need cake, presents, balloons, or any of that...No.  I think she does need to know that she made a difference in the lives of other people.  That her leaving us is a loss.  That we love her....and a part of our lives goes with her.  Yes..one day we will be reunited, but until that time, an irreplaceable piece is gone.

Why NOT celebrate her life?

I want to get her some of her favorite flowers.  I want to find her a card but I doubt I can find one that says:

Thank you...for reminding me that life is fragile and we need to cherish EVERY day.  For reminding me that friends are a tremendous part of what gets us through.  Keep them close.  For making me think about what having faith really means.  It isn't 'knowing' anything.  It's believing, despite proof, that there is something else to this life that we are just not privy to yet.  That what we experience here is temporary and we move on to something even greater.  You have taught me that love carries on...despite disease, time, separation, and difference. It always brings us back to who and what means the most in our lives. 

You are someone I can not replace.  I can only hope the pang of loss fades with time.  Happy reminders of you will always be in my heart.  And everytime I see a butterfly, I will think of you and wonder if it is you saying hi. 

I love you. 

Please tell God I am doing my best down here.  I hope I am doing right.  And if you drop me hints once in awhile along the way, I promise, I will do my best to pay attention!

Kim..it's ok to let go...to finally have peace.  I want that for you as much as it hurts me and I will miss you.  It is selfish of me to want to keep you here. 

Happy Birthday Kim.

I don't think I will find that on a card in a store.  Nope.  Maybe I will have to print this off and take it with me. 

Letting Go

I have been to see Kim a couple of times since my last post.  Her girls had their birthday party.  She had asked me if I got the information about the party.  I told her no.  She said she would make sure I had it in time to get there.  I waited until an hour before the party was to begin.  I never got the text message, so I went on with my day.  I was not upset or anything.  I figured something came up or maybe it ended up being more of a family gathering. 

I knew she could not text anymore as she had become so weak.  I called her the Sunday after the party.  She asked why I wasn't there and I told her.  She said her girls had wanted to meet me.  I reminded her that they had.  I suggested a little meeting by her....she said that would be great.

Things seemed to be unchanged with her status overall until yesterday.  I had tried calling her several times and she did not answer.  I decided to take a ride over.  I walked into her room and she was nodding off.  I said hello. 

"I was just waking up." She replied. 

"Did you have visitors today?"  I asked

She thought about this for a few moments and then said, "I honestly don't know." 

It was obvious she was still tired.  I sat and glanced at the tv as she was rubbing her eyes.  When I turned back to look at her, she was sleeping again.  I sat and waited for awhile, watching her breath.  It's amazing to me how sunken her face is, how skinny her finger and wrists are.  Her skin looks waxy and is discolored in such a way that it seems if you took a warm soapy wash cloth to it, you might get that color off.  Truth is...you wouldn't be able to do so.  Her lips were so dry.  It was obvious she had lost more teeth.   Her nails were still perfectly manicured....the one thing that makes her feel pretty. 

As I sat there, it dawned on me....she is letting go.  You can tell her soul is barely hanging on to her body...instead, it is reaching towards heaven...away from the misery this life has given her.  Visiting her is no longer for Kim...it is for me........to say goodbye and see you soon....for me to get any last ounce of closure. 

Her birthday is this Thursday.  She will be 33 years old.  Her daughter's birthday is this Saturday. I wonder if she will be here.

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.

Her New Home

Kim has been in hospice for just over a week now. I have visitied her twice. She seems to be doing ok. Her room is pretty...very nice view of a water fountain that the birds love to bathe in. She has a couch, a comfy recliner, a small desk type area...a television...and a few other things. You can tell they try to make it homey. She has three windows right next to eachother that all can be opened and a door leading out to a small patio. There is a few store bags with a castle and princess toys for her daughters...plenty of pictures of Kim and her girls. I have been trying to think of something to bring her that would give it a 'touch of home', but I can't think of anything.

The swelling in her feet has gone down tremendously. I assume it has to do with all the adjustable positions on her chair and bed to keep her feet elevated.

She is able to get up and walk around...sit outside. Her spirits are good. I asked her the last time I was there if she is still seeing her dad, and she said, 'not lately.' She is sleeping more and more. I am glad she is comfortable in mind and spirit. There is even someone in her life who has come to make amends with her and she is happy about that.

It's amazing to me....how different our lives are at this point...how easily it could be me instead of her. She is preparing to die and I am working full time, raising a family, going on a vacation this weekend. Our lives are very similar in some ways too...we are both mothers, dedicated to our children, have hopes and dreams. It is such a difficult thing for me to process and I have had over a year to wrap my mind around it. I suspect I never will.

I decided to memorialize my friend and everything she has taught me in a rather personal way. I designed my first tattoo. One of my other closest friends went with me to get it done. I wasn't sure Kim would be here long enough to see it, but she did. She very much approved. I am not sure I could ever convey the deep meaning this tattoo has for me. It is not a tattoo, it is a piece of art that I will always have with me for the rest of my life.