Timeline

During my dad's illness I was in constant search of timelines and signs and symptoms and what to expects. I wanted to be prepared. I hope anyone searching personal blogs like I did will find this useful. And if I can tell a fellow caregiver one thing, it's don't be afraid of the end stage. Everyone's story is different. Prepare yourself as much as you can, and know your strength will rise to the surface exactly when it's needed.

June 16, 2012 - Daddy goes to the ER, emergency bowel obstruction surgery, diagnosis stage IV colon cancer with liver mets

June 25, 2012 - Daddy is released from the hospital, and moves into our home - his home.

July 3, 2012 - Port placed

July 26, 2012 - Chemo starts, every other week

September 22-29, 2012 - Daddy was doing great, Fred and I went to Seattle on vacation, we came home to him feeling every possible chemo side effect

October 6, 2012 - Fred and I took daddy to the ER, they did a CT and we were told in the ER it looked like the cancer was growing. He was admitted and it took them 9-days to get his hydration and potassium levels regulated. When we asked his doctor about the CT, he said it was the chemo causing inflammation and we started to breath a sigh of relief.

October 15, 2012 - Daddy released

October 18, 2012 - His doctor says the CT scan show the chemo isn't working, the cancer isn't growing but it's also not shrinking. He's looking into other drug options that may work better.

October 30, 2012 - Daddy complaining of chest pains, and I took him to the ER. Feeling a bit like a pro after the first terrifying visit. He was admitted and released the same day.

November 1, 2012 - His doctor tells us he had the best treatment, but it didn't work. The next chemo option isn't as strong and comes with nasty side effects, so it's time to decide if he wants to live on chemo or he wants to focus on quality of life.

November 15, 2012 - Daddy admitted himself into home Hospice. Mother takes Daddy to a funeral home where he begins to plan his funeral and picks out his urn. (He pronounces it Ur-en...makes me smile)

Nov/Dec/Jan Appointments - He's doing great. So great at the January appointment they run tests to get a look at his bilirubin levels to see how the liver is reacting.

February 21, 2013 - Check-up. Daddy appears more jaundice. Complaining of pain under his ribs and around his spleen. Over the next few weeks his stomach started looking more and more bloated.

February 27, 2013 - Hospice nurse made her weekly visit and told him his metabolism was slowing down - eat 5 small meals a day

March 7, 2013 - His social worker called to check on him, and he asked they send a nurse that day. No one came. I called around 8:00 PM and they send a nurse out. She told him he was just constipated and needed to eat more fiber and start taking laxatives. He kept comparing the feeling to the way he felt before his bowel obstruction surgery, but he wasn't in pain - just uncomfortable.

March 10, 2013 - Daddy seemed to be doing okay. I asked if he wanted a nurse to drop by, but he said he could wait until Monday. Then around 6:00 PM he asked me to call. This time he was diagnosed with liver ascites and no bowel sounds. I asked the nurse if this was our sign that his health was starting to decline. She said not necessarily. Something told me it was. Listen to your instincts. From here on out he gets more and more jaundice by the day.

They delivered all kinds of fun pain medication that night and started him on some medication to get his bowels moving. And then it became a game of find the right pain medication. He doesn't like being knocked out, and the ascites causes fatigue in general so he was pretty out of it.

March 18, 2013 - Hospice nurse gets him on pain medication that makes him feel less fatigued. I leave a message for his doctor asking about getting the fluid drained, and they work me in the next day.

March 19, 2013 - The shock on Daddy's face when he saw how much he weighed, 172lbs. He was 161lbs at his last check up, and he's been eating so little we know he has actually been loosing weight. They estimate he's carrying 16lbs of fluid. We make an appointment to get it drained.

March 21, 2013 - Fluid drained. The removed 5.6 liters of fluid.

March 23, 2013 - He's lost an incredible amount of weight since the ascites diagnosis. Hospice nurse that diagnosed the ascites pulled me aside and said he was declining rapidly. This is the one that told me the ascites wasn't a sign of decline. Even with the fluid drained he's not eating normally, I tell him he needs to try to gain some weight.

March 27, 2013 - Fluid starts to return. Stomach distended, but not at previous pain level. Feet were swelling again to the point he couldn't wear normal socks.

March 28-29, 2013 - Started him on 12-hour slow release morphine pills. Visiting with his sister and seems to have much more energy. Eating well. No napping. Looking back I know this was his rally, the last spurt of energy before the decline.

March 30 2013 - Zoning out. Eyes rolled back, lids half shut, mouth hanging open, tremors in his hands. Oxygen fell to 85% the night before. Monitoring more frequently. Had visitors and was still able to communicate.

March 31 2013 - Much more zoning out. Dropped his drink and spilled it on himself. He aware he's declining. Slight ability to communicate - still wanted to stand to give hugs goodbye. Started getting hiccups.

April 1, 2013 - Near constant state of zoning out. Constant hiccups some almost gasping like. Decided it was best to bring Daddy back early from his sister's house early. Urine output went from yellow-orange to yellow-brown. Ate breakfast, very minimal lunch, no dinner. Drinking very little water.

April 2-4, 2013 - We brought in a bedside commode. He stopped eating completely. Taking in very little water. A few sips of Ensure. Went from being able to suck from a straw to having to drip water into his mouth using straw.

I requested family members to start saying their goodbyes on the 2nd. Before the decline, he wanted a will and to add me as a life insurance beneficiary. John, mother, and I told him he didn't need to worry about those things that his wishes would be met. I wanted to be sure he had nothing left unfinished to help him make the transition into his next home.

By the 4th we were only wetting his mouth with a water swab. He still had the urge to go to the bathroom, but he wasn't taking in enough fluid to go and it was getting scary trying to get him out of bed. We made him start using the diaper. I was alway nervous about reaching this point, but you do what needs to be done and in the moment when you love someone in this way it's not a big deal.
April 5, 2013 - More coughing to clear his throat. Eventually loosing the ability to swallow. My mother and brother visited until 7 PM, and he began the transition into the death rattle very shortly after they left.

WARNING: This stage is a fight. I didn't know it would be such a fight. A lot of coughing because he was unable to clear his throat. His heart rate was up, and I felt like his anxiety was high but hospice didn't give me liquid Lorazopan (anxiety meds) so I started administering liquid morphine every 30 minutes.

Looking back I should not have used the pulseoxmeter at this point, since his finger tips were no longer a good read for his heart rate. It very well could have been me projecting my own anxiety during this stage. By midnight he wasn't moving and had fully transition into the death rattle.

April 6, 2013 - Daddy passed away at 1:05 PM

Medi(ocre)caid. Alaughmony.

As I left for work this morning, I ran into our neighborhood deer family. No, not with my car. Just walked out the door and there they were munching on some breakfast. I thought, today is going to be a good day. Reality. It was probably just a little reminder to take a moment and breathe, because another emotional roller coaster awaited.

The good. Daddy finally has medicaid approval. It took over six months.

The bad. In spite of the divorce settlement being a legal document, his alimony payments are not being taken into account. The "spend down" amount (which is basically a monthly deductible) would leave him with a monthly income of -$800. We're taking door #2: I'll work out a payment plan with the hospital for the first months bills ($48,000) and Medicaid covers the rest. But I was left dumfounded that alimony payments are not considered deductible from his income.

So I asked (really should stop doing this to myself), if we were to go through this with my mother. Being that alimony isn't taken into account and she has no job, her monthly income would be considered $0.00 right? Wrong. Oh, so WRONG. Two words I had to google. Unearned Income. So alimony counts as her income, but doesn't count against his. Laughing yet? I wasn't either. 

Want to know what is wrong with our healthcare system. I didn't either. 

I'm not supposed to be here. This young. Seeing. Learning. Knowing the things I now know. I fight against it daily. Hourly. My parents weren't the kind to get a divorce. Those vows. Rich/Poor. Sickness/Health. They failed. It was no one person's fault. They failed together. And I'm here. Doing the things that my mother was supposed to do, loving him in sickness. 

There are days when I feel incredibly strong and empowered. There are days I want to curl up in a ball and sleep. Forever. (Pretty much did that from November thru mid January.) And there are days that I spin the wheel, and go though every emotion possible. I've debated writing about this stuff. For months. But I want a record. I want to remember the struggle as much as I want to remember to good. I want to be transparent. Because when someone calls me strong, I hope they know I'm only strong because I've been incredibly weak.

Come what may...

They say there are whispers. That G-d gives us signs, and it's our responsibility to pay attention. Notice them early, before the boulder crushes you. My whisper came less than a year ago. We were looking over divorce papers with daddy, and he said he didn't see himself living more than 10 years. THAT was the whisper. From that moment Fred and I made the decision to not take a moment with him for granted. 

At the time he was living with my brother. We welcomed him into our home whenever he wanted to stay, but once he lost his job he stopped coming over as much because gas was expensive. John had the bigger house, and one without stairs. I just didn't know there was a time limit on that living arrangement. I had hoped they could hold out until Fred and I could get a bigger place, but that wasn't what they wanted for their family. The month they moved him out, Fred and I took him along with us on a mini-cation to Charleston. We rented a boat, and we had him to take us and some dear friends of ours fishing. That is a memory I will forever hold dearly. Because that was the last time we would spend with him BC (before cancer).

It was around that time that I was diagnosed with endometriosis. And my doctor said try for a baby now or surgery. At the time my symptoms were intermittent, one month nothing - the next painful. We decided it was time to really try. Though we wanted daddy with us, we only have 2-bedrooms. And we wanted him to move in with us...forever. I couldn't do that if we were trying to expand our family. And it broke my heart. He moved in with his cousin. From mid-April through June we tried to get him to come over or let us take him out to dinner, but he would find excuses. I didn't know he was hiding how sick he was.

My dad was diagnosed with stage IV colon cancer Father's Day weekend 2012. I was with some girlfriends when I got the call. And until that moment, I didn't know what the phrase 'all the air was sucked out of the room' actually felt like. Now I know. As I was driving home from my friend's house, I kept repeating in my head - Come What May. Meaning whatever happens I'm going to accept it and move forward.

When I finally got home, Fred was as crushed as I was. And people don't really get that. They think, oh it's just his father-in-law. But we've been "Fred & Heather" for over 15-years. When we were at the hospital, our worst fears confirmed, I asked him if it was okay to bring daddy into our home. Because our place is small. And I know how important it is for everyone to have their space to retreat. But without a bit of hesitation, he said yes. Knowing fully what that meant.

A few days later, when daddy was less medicated, I held his hand and asked him to move in with us. Forever. He said that sounded like a good idea, but didn't want me fretting over him. (yeah, right) That was all we needed, Fred and I went into business mode and spent the next 3-days cleaning, organizing, painting. Turning a room into a bedroom. A week later he was released, moved into our home, and Fred and I earned a new title: caregiver.

And it's around here that people usually ask if we were still trying, and the answer is yes. The doctor gave him 2-years with treatment, and 1-year without treatment. My mindset was, come what may. We are going to continue to move forward, and whatever happens - happens. If we are blessed with a child, we'll find a way. We'll make it work.

Between my own doctor appointments and the week daddy was in the hospital, I had essentially expended my paid time off for the year. I had a little left for vacation, and needed to keep a few days just in case I needed surgery. Fred has Thursdays off, so while I would attend the big appointments Fred would be the one taking him to/from his doctor's office to chemo treatments. And we quickly realized that someone needed to attend the appointments because daddy didn't fully comprehend what was said. He would twist or make-up things. Fred was there. From the word go, Fred was there. Loving and caring for my dad. Supporting me. And I knew he was a pretty fantastic guy, but watching him love in that way. There are no words.

The chemo was working, the blood work looked good, and he was experiencing very few side effects. Fred and I went on vacation the last week in September. A vacation that was planned 9-months ago. When it was his dad that had the cancer diagnosis. And we came home to a sick man. Every side effect listed, he experienced. A week later we were taking him to the ER. And while he thinks it was the on-call doctor that told us to come in, that decision was placed fully on my shoulders. And that was. Terrifying.

That was when we got the first inkling that something was wrong. The ER doc ordered a CT and said it looked like the lesions were growing. Crap. Then his actual doctor came in and said no - we're going to treat this as a bad reaction to the chemo until I see proof otherwise it looks like the colon and liver are inflamed. Whew! He was released from the hospital 10-days later. His next doctor office visit was only going to be just a blood draw, so Fred didn't attend. Unfortunately, the doctor made a special note to see him. And that's when daddy was told the chemo wasn't working, and they were looking for other treatment options. Crap. Another appointment, another special note. Daddy said the doctor didn't seem too positive. Bigger crap.

The next appointment was an "extended" appointment. Anxiety was pretty high for all of us, but you try to keep it in check. Stay positive. Monday we found ourselves back in the ER. He was having chest pains. Nothing was found, and he was released the next afternoon.

Thursday. Big day. Come what may. The doctor comes into the room, and right away it feels...off. The doctor begins to explain that he was given the best/strongest treatment, and it was working. But it's just one of those fast growing cancers and it's become resistant. There is another option, but it's not as strong and the side effects are worse. So...decision...choice...live...quality of life. And my head is spinning, screaming HOLD IT TOGETHER.

The doctor continues talking and I'm looking at daddy. Watching. Does he comprehend? Still nodding my head making sure the doctor knows I get it...stop nodding your head Schiller, pretty sure you look like a bobble head. Hospice. Oh G-d, oh G-d...I'm too young to be witness to this. Hold it together. Why do I need to witness this, why am I here, what am I learning from this. Daddy begins to cry. G-d, how do you comfort someone that's just been told their life is coming to an end - rub his back, let him know he's not alone. The doctor starts to explain he doesn't have to make a decision today. Go home. Pray about it. Be with family. And even then you can always change your mind. And he leaves, giving us some time to compose ourselves.

Daddy is sitting, hunched over and starts playing with his cane. The cane Fred bought him. He begins, "you know I gave this all over to G-d, and if he wants to call me home a little sooner then I guess that will be okay." Then he started talking about trips he wants to take. And I'm relieved. Or as relieved as one can be in that situation. Because he wants to live. Enjoy this bit of time he has left. And then I'm heartbroken because we're here so quickly. Too quickly. I'm not ready.

So with all the emotion that comes. With an end. I'm writing. Writing my story. Writing our story. Because that is what helps me process. Because I have a lot of anger, and frustration, and sadness. Because I don't want to be numb. I need to get it out. Now. And it will be irrational and gross. I'm giving myself two weeks. Two weeks to get out all the gross. And then I'll focus on the life. On the days I want to remember. Forever.

Maine.

"May we be diligent and true,

dedicated to the right

and like the stalwart lighthouse stand

a beacon in the darkest night."

-Becky Jennings, The Lighthouse

Refreshing the artistic eye...

My love for Death Cab For Cutie just grew because of this video...

I love it because I do this everyday.

Everyday I have a goal to find something.  Beautiful.

Occasionally it's the socially acceptable form of beauty.  

But usually it's something odd, 

like a flower growing out of cracking foundation

or a streetlamp at night

or wind picking up a bit of trash and swirling it weightlessly through the breeze.

You can read more about the concept here.

[29] & [30] wrapping it up...

Day 29:  Something you hope to change about yourself. And why.

Hmm, I can't think of one particular item at the moment.  Body, mind, spirit. I hope to experience a change in each of those areas. Continually. Because being stagnant in life is boring. And dangerous.

~~~

Day 30:  A letter to yourself, tell yourself EVERYTHING you love about yourself.

Yuck!

Dear Self,
You are awesome.
And not as...
fatskinnybeautifuluglyhairyfreckledzitfacedwrinkledoldyoung
as you think.
And I love you.
Just as you are.
The End.

[28] knocked up...

Day 28:  What if you were pregnant or got someone pregnant, what would you do?

Welp, say it was me that ended up preggo. I'm pretty sure I would be ecstatic. I would probably eventually have a little mourning session over the loss of our life as a couple, but it wouldn't last.

For us, it was important to establish a life before kids. You would think after 14-years we would have had enough of each other, but I'm just now getting really comfortable with the thought of starting a family. I've enjoyed life before kids, I will enjoy life with kids, and I will enjoy life after the kids move away. The point is that no matter what life sends my way...I'll be joyful.

[27] the best things scare us...

Day 27:  What’s the best thing going for you right now?

Well, my husband's company filed for bankruptcy a several weeks ago. The first question was what chapter was filed. And the next thought was okay he's still working until he's not...and we'll deal with it. And it's looking more and more like soon enough he will not be working.

But rather than letting fear take hold we are trusting our faith. Worst case. Best case. Whatever happens there is a purpose and we'll learn something powerful. 

I'll be honest there was a week spent in worry and fear and doubt. And then one day I felt completely at peace. Because of all the Goliaths I've faced, he's sort of not all that scary anymore. I may doubt myself for a bit, but then it's all...bring it dude with the pituitary problem!

Call me crazy. But this unknown. The excitement. The IBS. I just know in my heart something wonderful is awaiting us on the other side. 

[26] to give up (but not really)...

Day 26:  Have you ever thought about giving up on life? If so, when and why?

Life all together, no. Never. The closest I ever came was craving escape. Just leaving everything and everyone behind. I had gone through an incredibly tough time - sorting through my past and realizing what made me and shaped me was not necessarily a good thing, but I was strong enough to take the bad and make it good.  

Unfortunately in order to turn it around, I had to leave some relationships behind. But it was the ones that were pulling me down, and I was not strong enough to pull myself up while attached to those relationships. And unless you have experienced it yourself, I think it's impossible to understand.

And it was that very lack of understanding that made me want to flee. Because I didn't know how to put into words what I was feeling. Because for someone that has never experienced that level of pain and hurt and collapse there are. No words.

But once I worked through my own grief and mourning, I found my words again. Too often fingers were pointed my way. I got the whole "I'm praying for her" routine. Because obviously working through my past and cutting unhealthy relationships means I'm Hell bound. 

But how many people can one person finger before realizing that finger is pointing in the opposite direction? I don't know. I do know, slowly but surly, the cracks are being revealed. Eventually there will be no choice, but I wonder at what cost. And that is the exact reason I took the steps I have. The pain, though great, is far less than what it would have been had it been allowed to fester. Mmm, that's a tasty description...but not really. 

Where in I adore Home Goods...

It all started out innocently enough.

The hubby bought me flowers for Valentines Day.

Then...he bought himself a new television.

(dude! we feel so modern now)

 

And new furniture just gets me in the mood to rearrange and buy new stuff.

Lucky for me a Home Goods is not far away.

There is one within a 5-mile radius of my office and house...

at least when it finally opens.

(pulling out the angry eyes)

Dear Retail Leasing Agent,

The notice is appreciated,

BUT 6-months and still not open...

your "coming soon" sign is kah-illing me!

Little funky storage box.  Check!

 

Swanky new pillow. (that doesn't photograph well) Check!

 Crazy-rad textured vase. Check!

Now the only thing left...

• a new area rug (how bad-to-the-bone is this one)
•  new curtains - because the skank ones have got to go
• and finally purchasing some frames to hang our travel photos
• oh, and finding a space saving solution for our DVD collection!