• sarah@healingeyes.org

Tag Archives: chemo

Second guessing

Jumping into the whole God world head first is proving to be difficult.

I am not ‘Godly’, I am just Sarah. A wife, businesswoman, car lover, dog lover, writer, artist, and pianist. I crochet and enjoy gardening. I do not play with kids and I am not a teacher of kids. I can’t even have any kids biologically…Andy and I tried and there is no little Andy running around with his hazel eyes.

I know how hospitals work, the ins and outs of cancer centers, how to use an IV pole, how to set up a feeding tube bag, medication doses, nausea remedies, eating without a stomach, and watching someone starve to death. Those are my skills!

I can work on computers, lead projects, and communication with global teams, travel, play video games, bike long distances, rollerblade, and even teach dog agility. Those are my assets.

I am tired and ready to give up, to realize my grief stricken mistake of moving to an island believing in something bigger to escape grief. Move back to Michigan and renting an apartment and working in an office is quite suitable to my skill set. I could even take up a medical career since I have 2 years experience in care giving.

It’s acceptable!
I miss Andy.. I want my life back!

The Caribbean sea is a prison and my mind is the torture device to keep me in a fog. Over and over I see who I was and long to have it back. The Emergency Room visits and all the nurse questions I can handle. I have notes and records for all of that. Every bit of that old life I would gladly take back if I could just see Andy again. To hold him in my arms and see his smile. I am a wife with a ghost husband.

What so called ‘God’ takes a 34 year old man and gives him a disease and lets him starve to death. While allowing his wife to watch him die, and in the end makes the necessary requests for the final narcotic pain relieving drugs to be given to him so that he can die in peace. Why do Christians always say, ‘It’s God’s will’. … ‘It’s God’s plan’.  When really its just cuz cancer sucks and we are stuck on this earth where there is nothing you can do but suffer thru it.

We can choose to cling to words in a book. We can choose to drink the pain away…take pills..exercise a lot..or just ignore the pain by shoving it deep down in the abyss.  Hundred of outlets and different religions are at our disposal. Is there really one magical answer? I don’t think so. It’s going to take several tools to get past the pain of death…deciphering which ones to combine is the age old question. Why does God allow so much pain for the ones he ‘loves’?

I remember how I avoided ‘God’ blogs because I didn’t want to hear the cliché over and over about it’s God’s will and God gives me strength. Now it seems I have turned into that cliché and it irks me. Andy and I did not find our strength in that. We talked thru things, we discussed our problems, and we worked as a team. Before Andy died the drugs took that side of him away. He wasn’t coherent enough to be my partner anymore. He was a shadow of Andy’s personality. I lived with a ghost already dead.

I find it really hard to turn to God for everything. 14 years of the opposite mind set is hard to just reverse in a matter of months. I am not even sure if it should be entirely reversed because there is some validity to living outside a bubble of faith. Dose of reality and pain can give different perspective on things.

Now what to do…? Stay on this island and still test this ‘God’ theory out and see if it’s for real by studying the bible. Or. Go back to the states and figure out what I want to do and what I am good at now that I am a widow. Or maybe there is a middle ground.

Either way cancer sucks! And Grieving sucks even more! Us elite cancer caregiver survivors wobble between guilt and pain and loss. What could have been done differently? What did I do wrong? Why cancer? What now?

Healing Eyes

Walking with Andy

Today I walked with Andy reliving our moments of love and pain together. It was and is our 14th Wedding Anniversary today. We got married at 20 years old and never looked back.

Coming back ‘home’ to michigan to take care of Andy’s ashes and also the symbolism of it being our wedding anniversary has weighed heavy on me for days now. Finally the day of our wedding vows arrived but the ashes need to wait until this weekend when his best friend can drive me the 8 hours to where Andy and I fell in love.

It’s hard to know where to begin with my day but I know that today was planned out for me and I didn’t even realize it. I had 4 things that were predetermined today. Everything else that happened was unimaginable when I first started off on my journey today

1. Doctor Appointment
2. Hair appointment
3. Lunch appointment
4. Meeting with Andy’s past doctor and close friend

After I finished by doctor’s appointment I made my way to Starbucks to get some tea for a friend back on the island. Little did I know that when I walked in this coffee shop the first words I would hear were ‘Cancer’. Ok a bunch of woman were sitting by the door discussing something cancer related. I decided to just walk by and get my tea and go. But there was this little voice in my head that said, “Pay Attention Sarah, I have a blessing lined up for you”. So what should I do? Well I walked right back out of the coffee shop with my tea and stopped at my truck, paused, struggled, and then turned right around and swallowed my fear of people and said hello to this group of ladies. “Hi, I may sound crazy but I heard you mention cancer”. I found out they were brainstorming ways to improve the cancer center that Andy and I went to…they all worked there. LOL! So I then told them a very brief version of my life and Andy’s death and just soaked in the blessing of connecting with people who UNDERSTOOD cancer.

Then I walked out feeling choked up and also a bit glad I took the courage to speak out to a bunch of stranger.

Now I looked over and there was the hospital Andy died in almost 6 months ago. Alright…the little voice started again and this time took control of my steering wheel. Minutes later I was standing in the ICU on the 4th floor just outside the room Andy died in. What was I doing here????!!! What crazy widow revisits the place where their husband dies on there 14th wedding anniversary?! I stared blankly at the door and the glass window which months ago held the image of Andy connected to wires and tubes. Room 403. I asked the nurse if I could sit in the room. Seriously! Yes, I broke down and cried and just soaked in the memories of that fateful night.

Andy had led me to this room.

Andy’s body was gone but my mind wouldn’t let go.

Now what? Well, guess what?! I kept on walking the path laid out before me….

Walking

The cancer center is just next door, sooo what did I do? Yup, I went there next. I followed the bread crumbs to the place of diagnosis and treatments. Once inside the doors I stared at the receptionist and said, “this is going to sound crazy…but…. can I speak to Katie, my deceased husband’s nurse”?  Short answer I was allowed back but not after a few back and forths and crying and then a stranger holding me and yea…I kinda broke down.

Nurse Katie…She was there when Andy first got dosed with chemo. She was there to watch me and Andy sit for hours and hours in those chemo chairs. She saw the dramatic change in Andy after the surgery. She saw our pain and she was helpless to fix it. The nurses at the cancer center see so much pain come thru there doors. I told her she meant a lot to Andy and I and that we appreciated her kindness. In return she told me that me and Andy were undeniably soulmates. That when she saw us together those long chemo days that she was amazed at how much love we had for each other and how we tried to find any kind of joy in the situation. We even tried to get her to say funny words like, poop in the pool. She remembered our dogs too. The one things she told me that I needed to hear on this day was that she saw our love for each other and she saw the change in Andy’s health. He died months before he died! She saw it too! I am not alone in that memory! It’s not my fault! Let go of the guilt!

My morning didn’t end here. After my hair appointment (where my favorite stylist ever did an amazing job, as always, to my hair) and therapy session with my hair stylist:). I have to say Amanda is great at cutting hair but even better at listening to a crazy lady ramble on and on about God this and God that. LOL. Who am I these days? You would think God has taken over my body and really has complete control over everything now.

Then I drove past my old house…I then turned back around and marched up the stairs and rang the door bell. Seriously, I did! Well I was led to do it. The guy that opened the door was a blessing. He let me in my old house and showed me how much they loved this house. How much joy and laughter was in this house now. There are 5 kids living in this house! Amazing! A lot of it looked the same and yet different. They kept some of the paintings up and the kitchen was still gorgeous. The old computer room was now a kids room for 3 (pink walls). And Andy you were wrong! There was hardwood floors under that carpet in Perfect condition! I told you so:). The mother in law also lived there and she spoke Spanish. He translated to her who I was and why I was crying in there living room. Oh my word…how did I get the courage to do that? Well this closure was just what I needed. He talked to me about his experiences with people in hospitals he has helped and told me how much they loved the house. He even said the one neighbors mentioned I was a nice lady and that my husband had passed away. Upstairs he had taken some shelves andy made and was using them…I burst into tears of joy. Andy lives on!!!!

Then after that…

I went to lunch with Andy’s old classmate from high school. She shared stories of how Andy was in Chemistry class. I guess he was super smart even though he looked like a punk. Oh Andy.

Free Cookies

Free Cookies

Then after that…

I went to the other cancer center downtown and saw Dr. Abby my friend. I hate to cut short on this part but I do detest long blogs:). She as always had some great therapy for me in our talk. The sarcasm and joking about some new business ideas was very enlightening. When you go thru cancer and see so much pain you can’t seem to avoid hospitals. The nurses and doctors can become family to you and a level of support no other family member can give you. They are with you from the start and you may get frustrated at each other but it still is a journey thru hell together.

Finally I went to Hope lodge. A place where during Andy’s surgery I was given a bed and comfort. There was a journal that I needed to find on one of the 3 floors. The guy at the front desk was very nice and we went to each floor looking for this public journal where visitors can tell there story. When I had stayed there I wrote an entry in it and I wanted to re-read it. Then I wrote another entry for today in memory of Andy. By this point I actually didn’t cry that much. The guy that helped me did the one thing that not many people think to do…. he asked me what my husbands name was and in that moment made Andy real again. All a grieving person wants to do is bring that person back to life in some way, even if for just a moment. Having someone ask his name is the most precious gift you can give.

 

I faced each terror at each building I was led back to and finally gained some peace.
God or Andy or both wanted to give me an anniversary gift today…a gift of peace and love.

I LOVE YOU ANDREW STACILAUSKAS… Andy’s song for me today.. Click Here

Healing Eyes

Lose it all to Gain life?

One more possession gone.

One more piece of me taken away.

I asked him his story before he took my iMac away. He was a college student studying music..he was a drummer but now wants to produce music. His little macbook Pro laptop wasn’t cutting it and it was time to upgrade to a faster, sleeker machine. He searched all over the place and the prices were high and then he found my craigslist post. One iMac for sale at an amazing price.

It helps to know the story of the person that buys my ‘stuff’. In some ways it lessens the pain when you know what it will be used for and what good can come from letting go something precious. The iMac was just a computer but it was also something Andy loved. He was my Mac guy! He was THE Mac guy! He was so happy when we purchased that computer a year ago with my bonus check. Although he never really did use it much but it was the idea of owning a 27″ slim iMac that really made his day.  I will take comfort in knowing that a college student will be getting more use out of it than Andy did….that it will be editing and recording music just like Andy used to do. At his job he had a sound lab where he helped students record music…he even let me use the room to have conference calls from when I took him to work when he was going thru treatments. What an odd world we live in, where one minute you are alive and struggling thru cancer and then the next I am moving away to an island and getting rid of all my possessions.

I truly own nothing of value anymore! I have clothes and a bed (the bed isn’t really mine though, it’s my parents).  Who am I? What is God up to?! How will I ever survive this crazy new lifestyle when all I have known is collecting stuff and living for a paycheck.

I am staring at the cash I just got my my iMac and thinking, “Man that’s nice but it’s just cash…it’s not going to bring Andy back and it’s not going to bring my joy. It could pay rent though, or maybe buy me a laptop when I need one”.

Why do we put so much value in material things? They are fleeting…

“It is impossible for you to have a need that I cannot meet. After all, I created you and everything that is. The world is still at My beck and call, though it often appears otherwise. Do not be fooled by appearances. Things that are visible are brief and fleeting, while things that are invisible are everlasting.”

Sarah Young, Jesus Calling

In a little over a week I am flying away, one way ticket to St. Croix! This Sunday I am telling my story to a video camera in my extremely empty apartment. A year ago I was with Andy just finishing up Chemotherapy and dreading the months of unknown re occurrence of cancer…not knowing if he was to live or die or when. Tomorrow I will wake up and wonder again what my future holds because that’s just what I do… constantly worry about tomorrow and paralyzed to live for today. Oh what release to live and truly understand happiness. Is it possible to live with little and gain more than my mind can ever imagine?

Healing Eyes

An incurable disease

No sign of disease is not the same as cured.

No sign of disease gives hope to an impossible situation.

Borrowed time to live another day and perhaps many many more. A sink hole fell beneath our feet but it didn’t cave in.
Four simple words, ‘no sign of disease’, a chance to think farther ahead of the next doctor appointment or scan. We have 4 more wonderful months to appreciate the memories yet to come.

Hopeful to not under appreciate what this gift has been. Almost a year ago the doctor said, large mass found, on that day we fell into that sink hole…it has taken that long to see the light of tomorrow again. If someone had asked me last year if I thought we would make it, I would have shaken my head in disbelief and whispered no. No…cancer always means the end. How can anyone survive it.

I’m not going to say we have survived it because that would mean its over and it was all for nothing. No we haven’t survived it or beaten it… We have learned to live thru it, to not give up, to keep some sanity, and to never give up on each other. Everyone loses hope and feels sorry for the bad that comes in their lives. I have felt that way, still do some days. But then I remember what i saw when andy was going thru chemo… I saw him suffer and still try to stay alive…he was so weak but he pulled thru, he endured those long days of treatment and tried to smile for me.
If we made it past those long days to be where we are now than I don’t want to squander that gift, I don’t want to rationalize what happened or why it had to be. To do that would let cancer pull me down.

There are others out there learning they have cancer….there are caregivers realizing they will never be the same….only those who make it into this elite group will see what we see. The world in a different light. Not a bright and fuzzy light but a real, difficult, unique point of view. Wake up tomorrow knowing its going to suck…it’s going to hurt…and you may not want to try….but remember life sucks for a reason. We just don’t know what that reason is. Just like doctors don’t know what cancer really is or how to fix, predict, or prevent it.

Maybe that’s because it’s the one illness we should never understand. If everyone lived charmed lives what a dull and uneventful existence that would be. I do wish they knew where or if the cancer would appear next … Wait no I don’t because knowing your future doesn’t make that future any easier to face.

Healing Eyes

series of events

Recap on the weekends series of unfornuate events are as follows (via the perspective of Sarah the caregiver)..

Saturday evening noticed a change in andy’s behavior and pain level. He had a small fever, more confused than usual, and the new pain meds weren’t cutting it. So as a frantic wife does I called up the emergency doctor on call that evening. An hour later we were back to nothing.. the fever was gone and the doctor saw no cause for us to fret.

Night progressed.. I took my sleeping pill and dozed off.. I then remember andy standing over me saying ‘wake up..mumble mumble..something about egyptians’. Ok that made no sense. I stumble up and see what is going on. Andy is standing in the kitchen and he looks feverish and in pain. I grab the good ole thermometer and yup 101 degrees. Ok not panicking yet since thats not the magic number.

To anyone who doesn’t know the magic number you are told when you are on Chemotherapy it is 100.5.

Few minutes later I check again.. 101 .. then 101.99 .. then 103 .. then 103.99. Ok now something is definitely wrong. Start calling the doctors and then wait for one of them to call back. Meanwhile I check again and his fever is dropping.. GREAT .. now when a doctor calls me back I’ll look like a fool because he has no fever.

Eventually someone calls me back. Not the doctor I was hoping for but good enough..we get the cue to go to the ER. I start pacing back and forth, which hospital (because we have 2 different doctors at different hospitals). My gut says go to St Mary’s ER because that’s where the surgery was and that’s where the most number of doctors are that know us. Plus if we get admitted than I already know the place like the back of my hand.

I drag Andy to the car, he isn’t very coherent which makes it actually easy to persuade him to come with me. We pull into the ER drop off zone and Andy steps out of the car where a security officer grabs him a wheelchair..I leave him behind and find a parking spot. We’ve doen this before so I have my emergency bag of knitting to keep me busy that I run to the main door with. I find him at the front desk talking to the receptionist. The lady asks our name and asks our problem. I say ‘CANCER’ long pause  ‘FEVER’  long pause ‘Insurance card please’. The receptionist asks what type of cancer, I guess she had cancer and wanted to tell us to stay positive. Yea ok, thanks.. we’ll do that right after we get thru this lady.

It must have been a slow morning because no one else was there.. we were brought right back to a private room and the questions began, the several nurses and various doctors of different specialities started there list of questions. Bla Bla Bla.. yes.. cancer.. yes.. no stomach.. yes fever.. yes I brought all his medications let me just spill them all out on the counter for you.

I learned there is such a thing as a portable X-ray machine! and I can’t be in the room when they do it, it’s quite interesting they wheel this large thing in and then turn the lights off and everyone steps out (except the patient ha) and then the push the bottom from this long extension cord that looked like an old rotary phone cord.

Next thing I learned was what ‘Full Code’ means. It means yes please save his life at all costs, electric paddles and all. I guess we signed something saying that last time we were there and they wanted to confirm because Andy’s heart rate was ‘Full Flow’ (another new term meaning his heart was beating very very fast). His oxygen levels were dangerously low too, this was all very fascinating as they rattled on about heart rates and no oxygen and full code and save his life.. I of course said Yes please keep him alive:)

We had hoped we wouldn’t stay long but when you come in with these symptoms and you are still recovering from chemo they don’t let you walk out. We were admitted back to the ICU room. Down the hall from where we were during the surgery months before. We even had the same nurse as last time during the day shift…funny…full circle.

The official diagnosis reads : Fever, unknown cause. Some doctors said Pneumonia and some said nah it was just a little fluid in the lung. Either way it was something and some sort of infection but a butt load of antibiotics were prescribed… and then halted .. and then I’m not sure but the IV bags did lessen. Two days later we are free. Back to nurse Sarah and assistant Miko… and mopey Yoshi.

Healing Eyes

How was your day dear

Day 1 million it seems. What I wish the most for today is for Andy’s pain to stop. I want to wake up tomorrow and see him smile at me the way he used to..with pain free eyes. I want the chemo out of his body. I want his body to heal. This won’t happen over night, it will take many more nights.
Many more silent nights together where I look in and see him hunched over in his chair from his drugs. At least the drugs can give him the relief he needs desperately.

I wish to find a way to brighten his day that doesn’t sap his energy. A way to pull him back from the abyss. If I could just be strong enough a bit longer to bring him thru this.
Oohhh the adventures we could have, the fun we will have, the new normal to begin.

I will wait..gain patience as I silently watch thru my foggy window. Shadows of andy slide by and come into focus long enough to remind me don’t lose sight of our love. It’s there resting and growing stronger. Come back to me.

To anyone that sees thru my eyes for a moment..I know others walk this road. We all have different twists and bumps that make that road unique to you. Cancer is unspeakable. It literally is a topic we hide from because it is so painful for patients and caregivers. We are one in this never ending battle. People avoid you, they stumble over words to say, the will say our prayers go out to you by default but that does nothing for the moment we are in. It’s fear of saying the wrong things that make it hard to talk. No matter what or how careful anyone is there is no right thing to say.
I like honesty over fluffy words. Yup it sucks, yup still in limbo, and yup I still go to work, and yup i deal with trivial things while my husband fades in and out at home.
..and how is your day?

Healing Eyes

Last long day

image

At the cancer Center getting our last chemotherapy. Well last long day at least. Here’s hoping it kills the bad stuff and leaves the healthy Andy behind. Can’t wait for April to come when we get more scans to see what’s going on inside.

Healing Eyes

A plan..

Breathe in …. and …. sigh
Being around people hurts
Its all a cruel game on trying to pretend that I’m ok

Ok that it’s another year passed by
Ok that we can’t have children
Ok that my true love hurts
Ok that I can’t make his pain go away
Ok that chemo starts soon

ok that I have three me’s fighting over me.
The first is the loving wife, to stay strong and never give in.
Second is the career woman, trying to keep the brain functioning while I feel powerless to move ahead.
The third one is my dark shadow, always there waiting to pounce on signs of weakness, every day it slithers out and drags me to the reality that cancer is hurting us.

It’s easy to Know what one should do to survive…putting it into action is a whole different challenge.
A wise man said to me, “You need a plan and follow it.”
That sounds simple…
1. Exercise
2. Eat
3. Make andy smile
4. Have quiet time to reflect or read
5. Know my limitations and seek people who care

I’ve done 2.5 of those things so far. Tomorrow who knows I might just succeed in four!

Healing Eyes
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