March 9, 2017 Smilow visit and community choir

I visited NP12 (Smilow, cancer hospital, 12th floor) , just to see who was working, and to walk around the floor one time. I go from time to time as a part of my healing ritual. I saw Emilee’s favorite APRN, and got a hug. We talked for a minute, and then I headed toward the front desk. As I did so, I passed a couple of family members outside of a patient’s room.

I was struck by the looks on their faces. I felt like someone had just twisted my gut. I saw pain, hurt, sadness and concern on their faces. I saw fatigue, I saw them going through what I had gone through with Emilee. I wanted to go hug them and tell them it would be all right, but it is not all right. It won’t be all right. I felt an overwhelming sadness just from looking at the expression on their faces.

Now, you could say that I was projecting my feelings onto their faces….taking what I am feeling on the inside and putting those feelings outside of me. But, I don’t think that would be entirely accurate. I have walked the path that these people are walking and it is not smooth, nor nicely paved. I have….about as close as one person can….walked in their shoes. It is a bad trip. I know this sounds depressing.

Did I learn things along the way? Of course. Did it make me appreciate my loved one differently, and change the way I saw many things? Yes. Did it deepen what I had with my wife? Yes, in some ways it did. Did it add something to my being human, yes, I suppose it did.

But, it was still a bad trip….and, that overwhelming, forever present, dark cloud hovering in the background was what I sensed when I took in the expressions on these people’s faces and their body language. It was a feeling that shook me and was inscribed inside in such a way so as to not likely be erased too soon, or too easily, or ever.

The feeling washed over me. Then, I saw the woman at the front desk. She spoke about Emilee and how sweet she was, how Emilee asked about her when she had been sick with a bad cold. She told me how sad she was when she heard Em had died. I think it was when she said how Em was such a sweet lady that she touched that place inside me that brings tears.

I never truly know what is going to do that…in grief lingo they call it a grief spasm. I know it happens less as time goes on, but I am comfortable letting it happen. It is almost as if at that very moment I feel touched not only by the person who is talking, but also by Emilee…and somehow I am honoring her by allowing the feelings to happen and not pushing them back inside.

It is like she is taking her finger and reaching inside of me and touching the part of my heart that just started to ooze a drop of blood, and by touching it she cauterizes it and makes the bleeding stop. Sad and yet comforted by feeling she is close. Both at the same time or instantaneously close. There is a part of me that doesn’t want that to stop.

Then I went to see our nurse friend on the eighth floor for a few minutes. We talked about how her recently ended relationship was very much like grieving for someone who had died, how similar the emotional roller coaster.

Then I went to community choir. Very laid back and relaxed. I got to sing two songs with Bob before a few more people joined us. There were seven of us eventually, but only four at that moment,.

You have to realize that singing two songs with Bob playing the guitar, was a significant thing. I was not in the car or the shower or walking around the house. There were other people present and I felt almost as relaxed as when I am home working on a song.

There were witnesses. People I met a few minutes ago. I felt a combination of both validation, and an inner joy that felt like finally some part of me had been freed.

Harmonizing with the rest of the songs as other people had their turns was fun, mostly unstructured and comfortable. Comfortable just blending in with the other voices, especially since harmonizing on the fly is something I love to do.

Now, that activity was well worth the time on many levels. I think Emilee would smile, I hope she is smiling, seeing that I was taking care of myself. She was very worried about me being able to take care of me. She made me promise her two things.

First, I would take care of her, not leave her when it got rough, and stay by her side from beginning to end. I fulfilled that promise. The second one is a little more difficult. Promise to take care of myself. And, lol, don’t do anything too stupid.

Doing something that allowed me to experience joy, to engage with others, to feel some healing, to feel that it is okay to live, to be alive, to smile, to laugh, all of it. I think she is smiling, but this all….. writing this….. still makes me cry. As long as she is still around to stop the bleeding, (just like ET, when he touches Elliot’s finger or his heart or both, and it glows and he says …”I will be right here”….god I cried with that movie), I will be all right.

Today, I passed a couple of thresholds, hurdled a few hurdles, and crashed through some force fields, some invisible barriers.

You know I have not really cooked a home cooked meal since Emilee has died. Oh, I made franks, but that does not count for anything. I have been heating up prepared meals that I buy from a place in East Haven called La Cucina, or from Fresh Fields, and this may sound bizarre, but I hadn’t even gone vegetable shopping. Why? I mean I have been going to the supermarket for milk and yogurt and cheese and staples, but there is a store Em and I used to go to once a week for fruit and veggies, and a few other items like pasta and special grated cheese from Liuzzi’s a specialty Italian market that has some of its items in this store.

She was the one that would cook. Although not much the last few months because she was too tired.
So, why go to this store if nobody was cooking? Well, I started having this craving for oven roasted vegetables. One of my favorite foods Emilee used to make. So, I decided to go to Connecticut Fruit and Vegetable market, where we used to shop. I did not realize that walking into the store would be the first invisible force field I would cross. Bam, it hit me as I walked thru the automatic slide doors and grabbed a cart. No, I did not walk into the doors, silly, (although it is in my realm of possibilities).

I almost never shopped there without Emilee. I always pushed her in the wheelchair that we kept in the back of the car. In the store, I would grab the plastic bags for the veggies, and she would do all the picking, and I would put the stuff in the carriage. You have to understand that she was superb at handling the shopping cart from her wheel chair. She would put her feet on the bottom of the carriage and handled the turns and corners with superb finesse. Most people were overly nice, but on occasion we would encounter a totally oblivious individual (she had some other descriptive names for them).

So, even when she had deteriorated in cancer progression, we somehow managed to get out of the house and go. It is only ten minutes from our house, and it is fairly easy to negotiate the aisles once inside the store, unless it is a weekend, so we tried to avoid those times. It was our time out together.

When I grabbed the shopping cart today, and started down the first aisle, I almost lost it. I had to remind myself (without talking out loud which I do incessantly and drove Em crazy….she said I talked to myself more than I did to her….probably true)…..had to remind myself to breathe, but the sadness came on me like this wave that you (I) did not see coming. I was pushing the cart, not the wheel chair. I was picking out the veggies. I was making all the decisions…..what veggies, which ones looked good, checking the dates on the containers of seafood salad, deciding what pasta I was going to use to make the…..the tuna salad.

I knew we still had elbow macaroni in the house, but I did not want elbows. I wanted baby shells when I saw those. Then it would be like the salad they have in the store, which I like. I had to remember what I needed to do these simple but delicious roasted veggies Em would make. I wanted zucchini and yellow squash, broccoli, baby tomatoes, asparagus, spaghetti squash (yesssssss, such a cool vegetable, just like spaghetti but it is squash strands…..sooooo cool). I needed panko breadcrumbs, has to be panko, and I needed high end grated parmesan from Liuzzi’s. I also absolutely love roasted baby cherry tomatoes.

So, I obviously managed to swallow the lump in my throat and focused on what I needed to get in my cart. I wasn’t sure I had enough olive oil at home, but was banking that I did. (Just enough it turns out). Okay, back home, get the bags inside, and figure from watching and helping in the past (when she felt well she really did not like me helping, it was only when she couldn’t stand for more than a few minutes at a time did she let me help……. So, next would come the test. Did I really pay attention?

Remember, I am the guy who managed to kill a precooked frozen veggie burger, and killed the indestructible (??????) pan, one of those ceramic jobbies that supposedly cannot be destroyed…….YEP…I did……first time using it……(LMAOROTFL and crying)….I burnt the veggie burger…it stuck to the pan and scorched the s**t out of it….lol….had to throw it out…along with the burgers…lol….lol….lol…..tears…snorting right now……lol…..click and clack brothers…..oh god……

Okay, where was I????? hehe…. Do the spaghetti squash first cause you gotta do that first. Because it takes the longest. Right. Cut it in half with the big kahuna of a knife, and do not cut yourself, put in the big pan with enough water to just cover the bottom of the squash. Oven on at 400, timer set for 45 minutes. Now get the veggies prepped. And get some jazz music on for background help.

I am breaking yet another one of those barriers and crossing a threshold. I am cooking in my own kitchen, no one is there to tell me what, how, when, although I could feel Em grabbing the seat of my pants and nudging me this way and that. Now for some very questionable knife skills. Wash the veggies. Cut the broccoli flowers off (I don’t like the stems), break the asparagus so it is the tender part that is left, thinly slice the zucchini.

Now I am realizing, that I have more than will fit in one roasting pan. Thankfully, I do have four roasting pans, because I needed all four. So, spray the pans with pam so the veggies don’t get glued to the pan, coat the pans well, lay out the veggies nice and neat. Now to drizzle the olive oil, drizzle not pour. Requires a little finesse. I don’t want to overdo the oil, and I am conscious that I do not have an abundance of it, and I have four pans that need to get drizzled.

Next, the panko bread crumbs, neatly but heartily sprinkled. Finally the grated parmesan, then a few more bread crumbs and voila, looking good so far. Timer is beeping for the squash. Poke it with a knife and if it slides in easily, it is done, and the knife slides in without resistance, so out comes the squash. The veggies can go in the oven, but I can only fit three, so I leave out the pan with the tomatoes. The other three go in, two on top, one on the bottom. Now to watch and make sure they do not burn. Set the time for 10 minutes and then I will check on them.

Take the spaghetti squash out of the pan of water…..steaming away….. and hot. Let it cool for a few minutes, then take a fork and scrape out the insides, and watch how it comes out like strands, magic.

I get that done, and keep checking the veggies. The pan on the bottom is cooking faster than the ones on top, so I flip that pan around so they all get done, and after another 8 minutes or so, they come out, and the tomatoes go in, I reset the timer for 5 minutes so I don’t overdo anything, get the dirty stuff that I used washed, and of course I am tasting the first tray of veggies…..the zucchini and yellow squash, and I am getting excited. Good…….no, really good. The panko gives them a crispy crunch, the cheese for flavor, and the veggie does the rest……simple but delicious.

The rest of the veggies cook, and when the panko is nice and browned, everyone comes out. Tasting. Asparagus is perfect, they all are. The tomatoes, oh my god I love roasted tomatoes.

I don’t want to get erotic here, but the flavors are orgasmic,…..in a culinary sense. For the taste buds, it is orgasmic, and damn it they deserve it don’t they? Simple, rustic type food. My bliss.
And then the bittersweet wafts over me. I know she is watching me, but ……. Ahhhh…….here comes that lump in my throat again. And of course, I am also thinking that this is practice for making dinner for someone, a friend, someone, I repeat, a friend, to share it with. (She smacked my head, again.)

So, now to put the dish together. The spaghetti squash when warm, got a little butter, just a touch of I can’t believe it’s not butter, the veggies go on top, prettily arranged if I want to go for aesthetics and points for presentation. Some grated cheese on top…… and IF someone wanted, they could put marinara sauce on it, but I am not going that route tonight. Bread would also add a nice touch, but that will be for company. No bread tonight. You could also put some kind of dressing over the top…..but I want it plain tonight.

I broke another barrier. I did NOT burn anything tonight. It actually tastes really good. I made dinner from scratch. She is smiling. She knows I not only can take care of myself, but…..damn…she just smacked me and told me to behave. I can start to cook when I am so moved. I can explore and see what else I would enjoy making. I did just say enjoy. Bittersweet. She is not here to enjoy it with me. She wouldn’t have been able to keep from telling me what to do……actually towards the end, she would get exasperated with me asking so many questions……just do it…..she would say...lol…. she even had to talk me through making a grilled cheese. I mean who doesn’t know how to make a grilled cheese???

So, I don’t think I will be cooking every night. But my repertoire of functional behaviors is slowly expanding. And I am sure I will learn to cook other meals. But, I am happy and I am sad. I crossed another threshold, broke another barrier, cracked another invisible force field wall, how overwhelmingly sad I feel. I feel both, this sad piano music in the background is not helping at the moment. I did not pick it.

Silly Pandora always injecting variety into my own composed station of blues, gospel, jazz old and new, music is such a godsend these days. Pat Metheny, Chuck Mangione, Billy Joel, Marc Antoine, my Pat Metheny station that I just throw all the jazz fusion in the world onto, along with Al Jarreau (So sad he just died recently), Take 6, more than I can mention.

Music….the power to take you and carry you, to hold you, embrace you, move you, bleed every last tear out of you, lift you up above the clouds, catch you, toss you, surround you, care for you, move you to move and dance, with your feet and body or with your mind while you are sitting in a chair, move your heart to ache, to mend, to smile, to cry, to feel…..to feel….something…anything….to feel...to know you are alive, and that you have an encyclopedia of emotions that play like an instrument. They can be strummed, stroked, culled into harmony, twisted into discord, exquisitely entwined or torn apart.

I don’t know this for sure, but I think most of us probably do not use music as much as we could to soothe our souls. To escape when we need to, and to engage us and help keep us alive. I am pretty sure it does something to our endorphins although I did not google that. I feel it. But I would be willing to bet we can use it to help cope better with the havoc that chemo can play on the body and the mind. And not just for chemo-related effects, but for mood enhancing effects.

Did I mention how good my dinner was? Perhaps I can invite you to join me sometime, metaphorically speaking? Or for real? A part of me wants company, and yet a bigger part of me wants to be by myself (have always been a loner), to write, to cook, to sing, to ……cry…..damn piano music again. Okay, switch it up. YES, Bob James and Earl Klugh, Handara on the album Cool. Now, that is music to groove to….such classy piano and guitar….god….they are blessed, a little calypso grooving funk. Can’t sit still.

You know, when I eat a really good healthy meal, I don’t look for dessert. At least not yet. Now they are playing Mahalia Jackson gospel, critics say she is one of the best gospel singers ever. She definitely has the spirit inside her. Then again, Bali Run by Fourplay on Fourplay, is more of a mainstay, staple, for me.

Intelligent music I call it. It takes you for a ride, with various twists and turns, and there are lovely sights along the way. Blue in Green (take 3) by Bill Evans on Best of Bill Evans, or Old Folks by Dave Hazeltine on Perambulation. And then, there is George Benson, my very first exposure to jazz when I was ……twenty-two. A housemate began my education in jazz. Hands over my heart to her (Mickey), wherever she may be.

And, on that note……..did I pull you in with me for a few minutes....you were here with me for a spell....and you kept me company.....as you always do...and for that...I am grateful....because without you.... I would truly be alone....this is my way of connecting...it is my channel...words and music....so....please come back...if you are having trouble with food, forgive me..... I hope my talking about eating did not bother you in any way. I hope you will pardon me and .....I am not sick with cancer.....I have lived through it vicariously, but..... I only know it from being next to it, so close....so close...so painfully close..........And, on that note…and a half dozen tissues …Always, Love, from my heart to yours…...

Losing her hair was traumatic. When her hair first starting falling out, it was as if she was mourning. There was a psychic or psychological pain that occurred. I think she felt like she was losing a piece of her self, a part of her identity. Her image, one she been looking at in the mirror for decades, was changing, drastically changing. She had long hair since her teens. The transition was scary. As her hair started to look sparse and uneven, it was time to take the big step.

We had a hair cutting party, with Jaime being the designated head shaver. Jaime’s head had been shaved for several years already, being a cancer warrior herself (Jaime has since passed, in Oct. 2016 after a long 5 year battle with breast cancer). And, Jaime had never shaved anyone’s head before, but Emilee was still entirely comfortable with her as the designated shaver.

She had her daughter for moral support, and Carol and Geri here for comic relief and distraction, and additional moral support. We had something to eat first, and Em was doing everything possible to stall. All went smoothly, though, and in spite of some tears, some of which were mine, quietly in the next room, everyone remarked at how nice her head looked. Even though the act itself was traumatic, and it would take a little getting used to, Emilee seemed to be in agreement that she looked pretty good for having lost one of her prized possessions. Still, it hurt my heart. I knew that it cut deeply.

Everyone should try wearing a wig for a day or at least several hours, before going out and buying five different wigs. Yes, five wigs. Of varying hair lengths and colors. To top it all off, she really did not like wearing them, and preferred her self, her natural, bald or short-haired self, as the hair started to grow back. The wigs were warm and got itchy after a while. She was becoming proud of her new look, and less and less self-conscious. She had variety also, bald or bandanna or various other stylish head wear. She also had her sunglasses and her many scarves.

You know, she was cold most of the time. Before cancer (ahhh, now I know what B.C. stands for), she did not like the warm weather, kept the thermostat at 64 winter and summer. We just wore sweatshirts in the house all year long. Now, in the summer the air conditioners were set at 74, and in winter the thermostat was at 70 or more. She was almost always dressed in layers. I had to adjust clothing accordingly, definitely sweating a good part of the time. She would frequently say, “Why are you sweating?”

Sometimes she had a hat and gloves on in the house, especially when she had the chemo pump attached with the 5FU going. Sometimes she just could not get warm. We bought an electric mattress pad, it goes on top of the mattress and under the sheet. Priceless, because it really helped. I highly recommend it. You can put it on prewarm, so when you get into bed, no cold sheets or blankets. Then, she kept it on low most of the time.

So, let’s talk about the initial impact of losing Emilee. I don’t know if I like my phrase, losing Emilee. Sounds like I am going to find her. I am the one feeling lost. Hopefully, she is not lost anywhere, and knows where she is going. I, on the other hand……let’s talk about the first couple of days.

After Emilee had died, the family came, and were in the hospital room with her. We were not rushed, no one was telling us to get going, and the nurse said they would wait until all our things were packed up and were ready to leave, before they moved Emilee. The funeral parlor wouldn’t do anything before 9 o’clock anyway. It was around 6 or 7 a.m. I had my cereal for breakfast and then we packed up the room. I was feeling strange, almost surreal.

I saw one of her favorite doctors on the way out, and told him Emilee has died that morning. He said how sorry he was, and we moved on to our cars. Mind you, we have two wheelchairs piled high with our belongings, with bags hanging from the wheelchair handles, people rolling luggage pieces. There’s five of us all together, carrying, rolling, all that we had amassed over the course of 31 days. Including, a comforter and pillow from home, and a small pantry of dry cereal and soups. We were a sight. A group of nomads. The Israelites crossing the desert. A bunch of homeless people who found a couple of wheel chairs. Just a few of the thoughts crossing my surrealistic state of mind.
We fit all of it into my Kia Soul. My brother followed in his rental car, and he and I headed to my house.

My brother and I were to meet the rest of the family in about an hour and a half at the funeral home, to make arrangements. As I backed into my driveway, which I have done a few hundred or more times, I misjudged the last few feet and heard a cracking or popping noise. I thought I hit the mini maple tree in the front garden, or maybe the corner of the siding which I had dented one or two times before (okay, verrry funny), but when I got out to look, I saw that I hit the electric meter on the side of the house, and knocked it half off, and……I cracked my passenger side tail light. Plus, I noticed that the basement light which is on for one of my plants, was not on.

Great. Can I please go to sleep now and pretend this did not just happen? I will have to deal with it after the funeral home meeting, but on the way (my brother is driving us….lol…I am now not currently safety rated or approved for driving), I call one of my friends who is handy, and explain what happened. I will have to send him pictures, when I get back home. For the moment, the basement level has no electricity, and that of course includes my furnace and the heat for the house, as well as the box freezer. The freezer will stay cold for hours, but the house will start to get cold.

After the funeral home meeting, the funeral is set for Saturday (this was Tuesday, January 31), the coffin is chosen, the down payment is made, and another appointment is set up to meet with the minister on the following day. Once home, I am sending pictures of the electric meter box to my friend. He instructs me to turn off the main breaker to the house. Then, go outside and see if I can pull the meter off and put it back on, being careful to keep it straight and not to twist or push at an angle, push it straight in, push hard. So, I could only push so hard, and the prongs weren’t all connecting. The basement power came back on but the first floor was now out. Laugh or cry?

Now, call the electric company, because I will need them, and a licensed electrician to put humpty dumpty back together again. Amazingly, the electrician came, spoke to the electric company on the phone, and they got here in 30 minutes. Fifteen minutes later, they were all done. The electrician would not take any money from me, saying, in another place, at another time. I was very emotional that day, and his kindness was enough to make me cry.

And, a call to the car dealer for a price on fixing the tail light…..they wanted $560. Are you kidding me??? No wonder why people duct tape them and don’t replace them. Luckily, my son in law looked up the part on the internet, ordered one that was about a third the price of a new Kia manufactured one, and when we got it, installed it in less than 10 minutes. It took him longer to get the part and the tools out of the packaging, than to install the tail light assembly. God bless him.

My brother kept asking me what I needed in the store, since I hadn’t been living in the house for a month. He took me food shopping. A funny phenomenon was occurring that day. Wherever I went, to the supermarket, a local grocery store, wherever we went where there were people….I felt this strange ability to strike up conversations and connect and it was not always surface talk. I almost felt high, floating, somehow able to touch beyond their skin.

We were in a neighborhood market/deli and at the deli counter I apologized to a man a bit older than myself, for possibly being served ahead of him. He remarked how nice of me to say something to him. This started a whole conversation where we talked about pancreatic cancer, and someone in his family having cancer. I felt like my normal boundaries were lowered, I was more vulnerable, and more able to interact with complete strangers.

That day, this occurred several times, talking to someone on line at checkout, getting gas at the gas station, returning something to a department store. It was uncanny. It was what I needed. I felt less alone and isolated, I felt a part of something bigger than myself. For that day, it helped with some of my hurt, some of my bleeding. They did not know that they were helping me cope, I was helping me cope, with Emilee’s death and this enormous sense of loss that I was not even yet able to fully give in to. I had felt loss before but not like this.

Over the next few days, the crying, the sudden onslaught of tears would come in waves, rising….crescendo…..whooosh, a crashing, crushing impact, followed by quiet. The wave would lift me up and drop me down, only to lift me up again. All of a sudden I was back in my house after being in the hospital for a month. But I was the only one here. SHE was not here.

Was she out somewhere and going to come back? My brain couldn’t yet grasp the concept, acknowledge the reality that Emilee was not coming back. She was not coming back in the door later, or going to appear coming out of the bathroom, I couldn’t see her lying in her bed on the back porch from my recliner chair on the porch or from the couch in the adjacent living room. I wasn’t fixing her something from the fridge and warming it up. I wasn’t asking her what she wanted for lunch. I had to put away …….her peanut butter that she kept on her nightstand. And, the fluff that she kept with the peanut butter. I finally had to shut the TV. She had it on 24/7 for distraction. I had left it on the whole time we were in the hospital, to ward off intruders and because I thought she would be coming home.

Those first few days I took to wearing things of hers. I wore one of her scarfs, and one of her pairs of sunglasses. I slept in her bed on the back porch and I still am sleeping there. I put some of her stuffed animals from the hospital in the room with me. About ten days before she died she asked me to bring two of her favorite stuffed animals to the hospital, they are named Winnie, boyd bears. Winnie 1 and Winnie 2. They have been with us a long time (and Winnie 1 is older and really needs a bath). I gave Winnie 1 a bath many years ago, and she thoroughly enjoyed it. Winnie 1 went to counseling with us when we went through some tough times. She was instrumental in helping to pick a counselor. See, if the counselor did not acknowledge Winnie, and ask about her, that counselor was toast…..gone.

Winnie 1 is a very strong character and has very opinionated views and you had better stay on her good side or she would give you some evil hand gestures or kick you in the pants….lol…. I loved talking to Winnie and answering for her. I took Winnie for a walk (I was carrying her of course) in the hospital, waving to the nurses and patients. She is very smart and astute and can sense a person’s nature almost immediately. Yes, some may have questioned my sanity, lol, others got a kick out of it.

So Emilee asked for me to get her a stuffed animal from the gift shop. I got her two. One sang if you pressed her hand…..she sang “I’ll be there, I’ll be there, just call my name, I’ll be there.” It is a bear dressed as a doctor, with a stethoscope around it’s neck. It made Emilee cry. The other was a pink elephant, just because there’s often a pink elephant hanging out in the room that no one is acknowledging.

A few days before Em died, she told me she wanted her granddaughter Brynn, who is 5, to have both Winnies. When Brynn came to the hospital and we told her, she was so excited she didn’t want to leave the hospital without at least one of the Winnies. She wanted to take both, but agreed that Mimi needed to have one for company.

Brynn and I would look out the window of the hospital room and spot people down below (we were on the twelfth floor), and would call them “humans”. We would see how many humans we could spot, and what they were wearing, and if it was a man or a woman, adult or a child.

I am still wearing my wife’s wedding band. When I came across it, I tried it on my fingers and it fit just right on my left pinky, which is nice because it has company right next door on my fourth finger. The two bands are next to each other, and a spin ring that she liked, also on the fourth finger. It has her name, my name, and her two children’s names. Sometimes I wear her denim jacket when I get chilly and am in the house. And I have a handmade copper wire pendant hanging from my neck that she liked.

I am not quite as leaky now as I was the first week or two, but I still am porous and still have holes, still open, still like swiss cheese, still vulnerable, and still feel like my walls have separated at the seams, my tape and spackle have come apart, and I still can reach through the walls and touch other people. Maybe if we all felt this way there would be less wars, less conflict, more compassion.

I walked into Starbuck’s one day and as I pulled into the lot, I parked a little down from the entrance, leaving the handicapped spot open in the front. I watched as a man and two other women walked toward the entrance, and he had a severe walk. Noticing my car’s handicap sticker, he asked me why I didn’t take the spot in front. I said, “I left it for you,” and smiled. We walked inside. I was being spontaneous, but I didn’t know if I had offended him.

Once inside, I decided to take out the two starbuck’s gift cards that have been in my wallet forever. I decided to pay it forward, sort of. I told the trio in front of me, “ I have two gift cards and I don’t know what is on either.” I said, “Pick one”, and turns out that the one they picked only had 84 cents on it. We all laughed, and then I gave them the other one, which paid for theirs and mine. We all had a laugh, and a little conversation, and I knew my Emilee was smiling down on me, saying good job. She loved to, on occasion, at Dunkin Donuts drive through, pay for the person behind us, so when they got to the window they were surprised that they didn’t have to pay.

There are still things that catch me off guard and open me right up. Like when I had to press the dolls hand to remember the song she sang when I was writing this, sometimes a smell, a coffee cup she used, something of hers I come across in the car, certain songs. The prayer, by Celine Dion, which I have sung to her a couple of times, Come to Me, also by Celine Dion, Lullabye (goodnight, my angel) originally by Billy Joel but also performed by Celine, as well as Leann Rhymes, and the best one by a group called The Idea of North .

Please…..go….find it on U-tube, and have tissues handy. Trust me, have tissues handy. Write out the words and sing along with it and have a cry fest. Especially, the end of the song……”and if you sing this lullabye…….then in your heart…..there will always be a part, of me…………..someday we’ll all be gone, but lullabyes go on and on, ……..they never die, that’s how you and I ……will be”
I have listened to it dozens of times this last week or two, and it still moves me. Let me know if it speaks to your hearts as well.

Okay, I apologize for the length of this…like the lullabye…. I go on and on…but….this is my therapy for now….this is me finding me again….this is me finding my voice….finding my way….. living my grief…..finding my freedom…..accepting being swiss cheese and all the waves…..all of it…..finding life…..and part of me is scared, and wicked lost at times, and feeling guilty for feeling good, and….. “in the arms of the angels…..may you ..find……some comfort here”

Not done yet….

Joy….. god bless my son and daughter in law who invited me to meet them at the Bronx Zoo this last Sunday. I had to give myself a kick (thanks Winnie) to go. I haven’t been to the zoo in decades. The seals, love the seals, urrrr, urrrrrr, urrrrr. My 20 month old granddaughter was just wide eyed….the birds….the giraffes…..the carousel….. I loved it…… starting to feel alive…..deeep breath…… grief is not a constant, and I am doing no disservice to her memory by not staying somber all the time….this is a hard one to juggle……but this is a process…

..and I am flying by the seat of my pants….. I am in it….. like my flying dream a week before Emilee died……seated in the train, the roof of the train car disappeared and I floated up out of my seat…………above the train…..keeping up with it…..but going higher than the clouds….wondering how long I could stay up and how high and how fast I could go…… no fear, just wonder and joy at being able to escape gravity higher and higher, and then slowly coming down, even with the train, keeping pace with it……wondering how I was going to get back into the train…

and then the train was no longer there, and I was in a classroom, and we were discussing the experience and I was asking if anyone had enjoyed the ride and experienced the exhilaration like I did…… and they all looked at me with somewhat of a blank, emotionless face…..and I am like…..are you kidding me?….that was an incredible trip….intense lightness and freedom and joy…… and then I woke up…
and I can’t explain the deep, deep melancholy that I felt…. There was joy…bliss.. but no one shared it with me….. and…..s**t …I am crying at the moment because I never realized what that dream meant to me until right this moment…no one shared it with me….how that brought me down…. Isn’t it so much better when someone feels what you feel….and you both have that shared connection…..….

And so ….. maybe that is why I write….because I never know what I may discover…… and that is joy that I cannot describe…. Wow….that was a three tissue moment…..lol…….okay….. hope you enjoyed that ride…. With me….that never happened to me before….going back and reliving a dream and really feeling that I felt what it meant in my body….embodied…as I was writing about it .

thanks for listening to my thoughts

the writing seems to help and I know that when you read this…..It helps keep Emilee alive in our hearts…..and she is smiling…..that's all i need for the moment

some stuff I left out when I wrote about Emilee's journey..... the ongoing battle with dehydration..... numerous times at the emergency department for one symptom or another that was rooted in being dehydrated.......needing fluids …when in doubt about why one is having the symptoms they are having especially after chemo, suspect dehydration. Even if she wanted to she could not have drunk enough fluids, and most of the time she did not want to drink that much.

and, she would not take the enzymes....she didn’t like any of the pills…the enzymes were supposed to help with digestion of food…since the pancreas was severely handicapped by tumor…..she tried the enzymes in the very beginning....but did not like them....tried them again later on.....i even got the ones from the health food store that were not from pigs.....all the prescription ones are porcine based....poor piggies.....but she would not take those either....said they bothered her bowels.....the porcine based ones gave her a headache

she hated taking pills..... and even the potassium and magnesium....at least those she got by IV when her numbers were really low... i have soooo many pills that she would not take

she would speak to her daughter courtney repeatedly every day.....texts....phone.... they were friends.....close friends.... courtney keeps busy with children and work, but I know when she stops and it is quiet, she hurts

the dronabinol...... marijuana pills.... i still have them in the fridge....yeah...lol.... i did not try them yet....but i will....one of these nights..... she didn't like those either..... only took them a couple of times to help her get to sleep when she was so nauseous , but she did not like the way they made her feel….and….like she told me with ALL the pills, she would say, “You take them, I am not taking them”.

sleep.... she was up half the night every night..... would usually fall asleep around 9 or 10 and sleep for 2 or 3 hours and then be up from around 1 to 3 or 4 or so, then would sleep for a few hours, had to wake up to eat something so her blood sugar didn't drop too low.... constant worry about sugar dropping..... in the early stages it was worry about how high it was....and dealing with insulin….long acting and short acting........later on, it was worrying about how low it was going….and not going too long without eating something

dark days....some days i could not reach her, she was so depressed

some days she would bounce back with energy and start cleaning, straightening, dusting, and overdo it...and then be exhausted. .. early on we started using the transport wheel chair when going anywhere. Stamina or endurance was limited. Sometimes, early on, she would walk around the main floor in our house, one or two laps around and she would be fatigued. On and off she would need the rolling walker, mostly towards the end when her breathing was getting more difficult.

she was obsessive about the sheets on her bed being changed every few days.....and then she wouldn't always let me make the bed right away.... I had the clean sheets ready to go but sometimes it would be a day or two before she said okay, make the bed. And the sheet HAD to be tucked in with hospital corner style...It took me awhile to learn.....lol....she would get exasperated with me....HOW MANY TIMES do I have to show you...ahhhhhhhhhhh.....I finally got it.... well.... I got it good enough

probably no one really wants to hear about the bowels…… before the gastric bypass it was mostly constipation versus diarrhea……back and forth and back and forth…. Stool softener which she would not stay on regularly, senna or senna plus, sometimes lactulose ….before the bypass….but that was harsh, and she stopped using that after the results were…..okay, okay….censoring

after the bypass, we bought stock in immodium…… many, many of our outings were strategically planned around bathroom locations. Of course, they had to be decent bathrooms. I had the zagat ratings for all the available bathrooms in a 10 mile surrounding radius…not just for Em, but I frequently have an overactive bladder…sometimes needing to stop more than she did….So, Dunkin donuts was acceptable, Bishops was a good one, Mom’s house was always available, when nearby…, our favorite little market in Northford…. Bed Bath and Beyond, especially good because the bathroom is right near the entrance…verrry important….verrrry……..did I say very???

One day…..just one….we actually laughed about this. Laughed till I was crying, tears running down my face, not knowing if I should be laughing so hard because it was so heart wrenching and yet hysterically funny at the same time, kind of like now as I am writing this and tearing at the same time. At least on that day, she laughed with me….which by the way, could be dangerous…….damn….I miss her voice, especially her laugh.

I can’t help myself. Emilee…..forgive me hun. It is worth telling. At various times throughout the ordeal, and especially when going from sitting or lying to standing, there basically was no control over the gas. None. Some periods were worse than others, but it was pretty much a given, if she stood up, she had gas. Our granddaughter said one day, Mimi, you sure do make a racket. That became a standing joke….ha…no pun intended. We had a T-shirt custom made. It said……on the front….racket coming with a cloud that said CHEMO. On the back, it said, racket going, with a CHEMO cloud. Funny, I think she only wore it once……I will have to find it and take ownership proudly.
Her sunglasses, she was soooo the movie star with her sunglasses. She had at least six pairs or more. Her favorite ones were the turquoise ones. Very cool, especially when her hair was short or gone completely. Almost always on top of her head if she did not have them covering her eyes. And, yes, we do need a picture.

More to come…….stay tuned

My wife of 16 years, Emilee, passed from pancreatic cancer (exocrine adenocarcinoma) on January 31, 2017. She was first diagnosed on May 9, 2015. Here is a summary of her journey.

She hadn’t been feeling right for several months, maybe about six months or so. She had been losing weight, which is something she had wanted to do, so it did not initially sound any alarms in her head. Well, it might have, but she did not talk about it. She was also not quite right energy wise, and was feeling depressed.

One week before we went to the emergency department she asked me if her color looked funny, and I said that she looked a little pale, maybe a little yellow cast to her skin. I said let’s go to the emergency room. Initially she said okay, but then said no, she would wait.

Emilee did not like doctors, and she had to be pretty sick to even contemplate going to one. So I knew she was not feeling well, but she was very stubborn when it came to medical issues. Another week went by, and it was a Saturday morning. She called me into the bedroom and said look at her color. She was extremely jaundiced. Orange yellow color, like she had used some type of tanning cream. We knew something was wrong, very wrong.

At the emergency department, they took blood, and did an immediate CT scan. A short while later, the young resident doctor came in and said, I have some bad news. You have a carcinogenic mass on your pancreas. He really was a nice man, he just needed a softer way to break such devastating news. Also, her blood sugar was around 700, and now had diabetes which would have to be controlled with insulin.

Emilee would spend the next few weeks in Yale New Haven’s Smilow Cancer Hospital. Known as Smilow, they first addressed her blocked bile duct by performing surgery and placing a bile duct or biliary stent, to allow the bile to flow. Her cancer was staged at stage 4 with metastases to her right adrenal gland and both of her lungs (diffuse but numerous tiny spots on her lungs, and the tumor was on the pancreatic head).

Eventually the blood sugar was brought under control. It took several weeks for her to stabilize and be strong enough to go home. Surgery was not an option, and her first oncologist presented limited chemo options, due to her debilitated condition at the time. In July she started Gemcitabine and Abraxane, the only regimen her oncologist felt she could tolerate. It seemed like just about every chemo treatment Emilee would wind up in the emergency room for one reason or another.

By the end of August (she was getting chemo every other week), the side effects from the Abraxane were so bad that it was decided to just try the Gemcitabine alone. We also decided to change to an oncologist that had a little more hope in his approach and some optimism in our being able to explore different chemo regimens depending on how Em was responding.

If there was a side effect listed, Emilee had it. Mouth sores, loss of hair (she actually looked really good bald and then very stylish with short hair, and decided to not wear the four wigs she bought except for one or two occasions; I guess I have to mention the one day I wore one of her wigs and looked like a real hippy for a day), neuropathy, nausea, skin issues, sometimes pain, ocular migraines, neurological migraines, the list went on and on.

The neuropathy in her hands and feet stopped progressing once the Abraxane was stopped. Her new oncologist felt that the Gemcitabine alone could be helpful, and it seemed to be lowering her CA 19-9 antigen, but then she started with signs of lung toxicity from the Gemcitabine.

In addition, she was having ongoing nausea and digestive issues. She went back into the hospital numerous times for nausea control, for migraines, for occasional bouts of pain, and finally she needed a duodenal stent, actually two, (around January 2016) to help hold open the intestine where it meets her stomach (the duodenum).

That helped with nausea and digestion for about a month, and then the stent was no longer working properly and food was not going through as the tumor was infiltrating it. There was a period of about 4 weeks where she was constantly nauseous, with intermittent vomiting.

Emilee then had surgery (in the hospital from mid to the end of March 2016) to perform a gastric bypass and thus go around the blocked area of intestine. Finally, she was able to eat. Her bowels were not normal, and the food did not digest very well, she had frequent bowel movements, but she had an appetite and was no longer nauseous. The temporary GJ tube that was placed after the bypass surgery was removed within a week.

In January of 2016 she had one pleurex drain placed in her left lung due to repeated fluid build up. Then the gastric bypass, and 5 months later(June 2016), a pleurex drain was placed in her right lung. I was doing the draining every other day. Those stayed in place without any infections until December 30, 2016.

The chemo…..the Folfiri regimen. After she recovered from bypass surgery in March 2016, she began chemo again, and she did not like the infusion pump that stayed attached for two days. Oh yes, by the way, she finally had succumbed to having a power port placed primarily because she had no choice with the folfiri regimen. Up till then, she resisted, even though her veins were uncooperative and required some skill on the part of the IV nurses.

Folfiri had its side effects, the mouth sores, the nausea, some diarrhea, but overall not too bad and tolerable. We had a fairly good stretch where we stayed out of the hospital. I will always say “we” when referring to hospital stays, since I stayed in the hospital with her. Although out of the hospital, depression was an ongoing battle from early on. It varied from mild to severe.

Emilee’s breathing difficulties gradually got worse. By December of 2016 she was using oxygen at home both at night and during the day. It started out that she was more comfortable with the oxygen at night only, but as weeks went by, she needed it for comfort during the day as well. Her oncologist had decided that after the holidays, she would change to Folfox, swapping out the irinotecan for oxaliplatin.

She took a holiday break from the chemo. At some point, I believe back in October 2016, she started doing chemo every three weeks instead of every two weeks, to have more recovery time and to have some days where she could actually enjoy activity and have some energy to go food shopping with me, go to her daughter and mom’s house, and to go gift shopping and furniture tag sale shopping. She ran an online home decorations and furniture site on facebook, which required ongoing effort, and could keep her very busy when she had the energy and patience to do so.

Up to this point, she kept herself going by setting short term goals, such as making to a birthday, a holiday, birth of a grandchild, grandchild birthday, and many other such goals to give herself something to shoot for.
The Christmas holidays were always a major event, and she loved going all out with gift buying and making sure each person was very well covered.

She was starting to feel weaker and her breathing was starting to deteriorate gradually. One of her fears was that she did not want to die around the holidays. She did not want her family to associate the holiday with her death. Her dad had died three years earlier of Alzheimer’s related issues, on January 31, 2014.

In late December (the 30th, a week after our sixteenth anniversary), her two pleurex lung catheters were removed, and a biopsy was taken from a large lump near the right drain. Her interventional pulmonologist suspected it was tumor growing out from the drain site. It was not painful, and even though the biopsy was positive, he did not feel it warranted any action.

On new years eve, which was a Saturday, she started having more difficulty catching her breath and her oxygen saturation was erratic, so we called 911 and the ambulance took her to Smilow and they admitted her. She was having sporadic breathing crises where she felt like she could not get enough air, even with 90 to 100% oxygen. These episodes would last an hour or more.

She was now on her favorite floor in the hospital. The rooms were not cramped and all were singles on the floor, most with a decent view and a large window. The staff were familiar, and competent, and Emilee had met many of them before.

With her breathing somewhat stabilized, they started her new chemo in the hospital on Tuesday, January 3. As an outpatient, she would have had the portable pump infusing the last of the chemo meds, the 5FU, over the course of 46 hours. In the hospital, she was attached to an IV/pump pole.

On late Tuesday (11pm), she was dropping to 88% O2 on 6 liters oxygen and although she was not fond of Lasix because it usually messed with her blood pressure, they started with a small dose of 10 ml, followed by 20 ml about an hour later. They switched her to a face mask for oxygen at 95%.

We were able to lower the oxygen to 45% after a half hour and she was maintaining 88% and above. We had to place a bedside commode since it was too much to keep getting to the bathroom to pee. The nurse came in at 5 a.m. to take blood to run labs, and after waking Emilee, she left to get something she had forgotten. I was asleep on the cot in the room. Emilee sat up in bed and needed to pee, so she stood and took half a step toward the commode and her feet got tangled…..and she fell.

I woke up to the sound of her flesh and bones hitting the floor. My yells brought a group of nurses and PCA’s. She did not hit her head and did not rip out her port, but she was talking about left hip pain and also having to pee. We got her on the commode (little did we know this would be the last time she would get on a commode for weeks). We got her into bed, for the beginning of an ordeal no person should have to experience.

They took Emilee down stairs for an initial left femur and hip x-ray, and CT scan of her head. Transferring her from bed to x-ray table and back to bed was excruciating, and to add insult to injury, after she got back to her room, orthopedics wanted additional x-rays taken and so they had to repeat the process all over again. The nurses placed a foley catheter so she would not have to worry about getting on a bedpan to pee.

They also wanted to get an MRI to rule out bone pathology, and that did not happen until about 6 P.M. She got some IV Ativan before the MRI, but refused dilauded at this point. It was not a restful night. Ortho came into the room at 5:30 a.m. to tell us that they still did not get the MRI report, but that they knew the bone was fractured at the greater trochanter and would need a titanium rod and screws to secure it at the top and the bottom, that would secure the three or so fragments that were cracked and displaced. Surgery probably would not be until later in the day due to the large number of emergencies (Emilee was thinking….uh, what am I???).

Later in the day she was in so much pain that she agreed to a small dose of dilauded, which prompted her to desaturate, and they had to maximize her oxygen until she improved. This is not what you want to happen before a surgery where they are going to intubate you. I was extremely concerned about them being able to extubate her after the surgery. Fortunately, her oxygen desatting episodes were scary but not much worse than the one she had just prior to the surgery.

She was in crisis mode shortly after getting back to her room after recovery, but after some debate with the floor doctor, he agreed to see how she was in one to two hours rather than send her to the intensive care floor. Luckily Emilee stabilized during the next couple of hours. We were able to control her pain with tramadol and Tylenol, and Zofran for the nausea she was having.

Since it was still too painful to move, or change positions, Em had to use a bedpan. If there was any modesty or dignity left, well let’s just say I did my best to remember to pull the curtain on the side of the bed towards the door, and to close the door….if anyone did come in (they almost always knocked first) they would encounter the curtain and I would ask them to give us time to finish.

I gave myself a new title, CPO, chief potty officer. Emilee was more comfortable with me than anyone else, and I accepted the responsibility and quickly learned two things. How to do it right, and that it was near impossible to keep the bandage on her tailbone clean. The skin was starting to break down from pressure, moisture, lack of movement. So frequent changing of the puff something or other (I don’t remember what it is called, the name of the bandage) was required.

We plodded on, with intermittent breathing crises, gradual improvement in ability to move her left leg, and standing with usually assistance of three, a physical therapist, a physical therapy assistant, and an occupational therapist. She would get on the commode only when they came, and she was taking a few steps by the following week.

On January 17th they started talking about discharging her to rehab, but Emilee said wait a couple more days. She had been on prednisone for a few days to help her lungs, and they stopped it today due to its wreaking havoc with her blood sugar. She was also starting to have incidents where mucus would get stuck and she would have trouble getting air exchange which was very frightening. These would last for a few minutes. Increased nebulizer treatments, percussion to her chest, and use of a plastic apparatus you blow into called an acapella, were helping somewhat.

She was getting agitated that afternoon, after having a migraine, and was just getting fed up with everything. I got her Japanese food that she liked for dinner as she was sick of the hospital menu by this time. She also started having pain that evening in her lower back and right abdomen which was tender. Tramadol was not helping, but the IV torridol helped with the pain and the agitation that accompanied the pain.

The next day she had a fever and felt like she had the flu. An ultrasound of her abdomen indicated possible bile duct blockage. After 2 a.m. she was npo (no food or drink). Her fever had gone up to 102 but started coming down after Vancomycin. She waited all day for surgery which didn’t happen until about 5:30 p.m. and they needed to place a biliary drain (January 19) with an external tube and drain bag.

So another surgery was performed, fortunately without general anesthesia, and although I was told there was some cursing on her part during the procedure, she generally tolerated it well. It was only on December 30 that she had her two pulmonary catheters removed, and now had to have another drain, but at this point she did not mind so much. Anything that kept her more comfortable was acceptable.

Ten minutes after returning to her room from the recovery room, she began what they call rigors. Pronounced “rye gors”, severe chills with violent shaking, her temp went to 101, her heart rate was 130, sugar was low at 60, BP went to 180/100, but came down to 130/82 after awhile, and her o2 sat was at 82 on 5 liters oxygen, and that came up to 90 with facemask and o2 rate at 50%. Heart rate lowered to 84 after 20 minutes, and IV dextrose brought up her sugar.

By the following day, her bilirubin was decreasing, her sugar was better, urine output was still low. She had been on Vancomycin and ceftazadine the last two days for the biliary issues and I believe a urinary tract infection. She had also been using a urinary catheter for some time after the fall and fracture and following the hip surgery. Physical therapy was able to switch her to nasal cannula oxygen with good o2 stats maintained, so she could take a few extra steps from the bed towards the door to the room.

Early Saturday morning 4 a.m. January 21, Emilee woke up nauseous and vomited, and got some Zofran and Ativan. The doctor wanted to try a small 1 mg dose of Haldol but she refused. At 10 p.m. she was nauseous with head turns, achy all over her body, body very cranky….got Ativan and tylenol, and finally quieted down by 2 a.m. Sunday morning she was still nauseous, and had blood in her urine, but an ultrasound did not show anything.

The night before they stopped the Vancomycin, and this morning stopped the pantoprazole. Her o2 dropped at 4 p.m. and she needed to switch back from nasal cannula to mask. The same thing happened at 11:30 p.m., and she stayed on the mask, and was able to drop from the initial 70% o2 to 40% after a half hour. She was able to go to sleep with 28%, but at 430 a.m. woke up and her o2 sat was 84%, which improved with 40% O2. Her respirations had increased to 28 per minute during the event. They gave her 1 mg Ativan during the episode.

At 7 a.m. Emilee’s achy back and legs increased to severe pain, and the tramadol was having very limited effect. Torridol was given. Later in the day (Tuesday January 24), they gave Em a unit of blood to boost her hemoglobin and hopefully improve her energy. She was still on the ceftazadine. At midnight Tuesday into Wednesday, she had right abdominal pain and her abdomen felt harder in that area.

Later in the day on Wednesday, two different hospice people came to talk to us. One was inpatient hospice which means she could stay right where she was, have the same staff treating her, but an outsourced hospice team oversees the medical orders. The other was a hospice facility that she would have to be moved to.
Emilee slept all morning and most of the afternoon on Thursday January 26. I don’t think she wanted to be dealing with the decision of hospice. It all came on too quickly, hastened by the fall and leg fracture. She did not want to deal with it, so she slept.

Unfortunately, the number of beds allocated to “hospice” in the hospital were limited. That meant if we did not make a decision soon, the allocated space would go to someone else. So to add to an excruciatingly difficult decision to be making about your death, a little pressure to hurry up and make a decision, made for one very upset and very angry Emilee. She flung a package of cheese just out of sheer frustration. I think she really wanted to break something.

Emilee finally ate something at 4:30 p.m. that day, she had one of her favorites, a grilled cheese. They resumed the pantoprazole, as she felt burning in her abdomen. Our favorite APRN came in to talk about the hospice decision, and since Emilee was leaning towards staying where she was already comfortable, with staff that she knew and liked, it just reinforced what she and I were already thinking. The decision was made.

Everything remained the same except it was easier to increase the frequency of pain meds. On Saturday much of the family came to visit, and she had visitors most of the day, which made for a very tired Emilee. My son and daughter in law came with our 1 ½ year old granddaughter and 1 month old grandson. The baby laid on Emilee’s chest as our granddaughter gave Em a hug. To say that was priceless doesn’t begin to describe my feelings, and Emilee’s as well I am sure.

I did not hear any formal goodbyes, but the feelings were present in the room. When I said goodbye to them downstairs and my granddaughter reached out for me to pick her up and hug her, I lost it completely. I held her and sobbed and my daughter in law hugged me too and we all cried. She said she would come back in a few days and I told her I didn’t think there was that much time left. They live about 2 and a half hours away. I had already called my brother in Florida and he was flying up on Sunday.

Saturday night Emilee started having difficulty at 10 p.m. We gave her Ativan and increased her oxygen to 70% and then at 4 a.m. her O2 dropped to 78 so we increased her oxygen to 98%. IV Ativan was repeated, we were using the rebreather which is essentially 100% oxygen, she had a nebulizer treatment, and finally her O2 sat came up after dilauded was given. She finally fell asleep and seemed more comfortable. She really did not want the dilauded I think because she thought she would not wake up. She was so distraught in discomfort and pain and getting increasingly agitated that I had no choice.

Emilee slept until about 10 a.m. She was very groggy at first, with absolutely no filter to what she was saying. I can’t recount all that she said, but some of it was quite hilarious, and her daughter decided to wait a little while to bring in her children lest the last thing the children remembered of their mimi was something very off color.
Emilee was okay while her daughter, son in law, and children visited on Sunday. Her mom had been there on Saturday, and Emilee’s son as well. On Sunday afternoon, my brother arrived to a tearful scene, and a close friend came early evening. That night Emilee was up from 1:30 a.m. to 7 a.m. Multiple doses of Ativan and torridol, and she was telling me to take her home, she said, “take me home, take me home, I want to go home”. Another dose of dilauded at 7:20 a.m. and she finally went to sleep. That was the last time she spoke.

She slept all day Monday, except for around 5 p.m. when she got very restless and started pulling at her oxygen mask and her port line and we had to give her more dilauded. Her daughter, my brother and I were with her all day, and one of my sons and my nephew came to see her as well. Another friend came at 10 p.m. because I told her to come to say goodbye. She stayed with me and Em until midnight.

I moved my cot next to her bed. I held her hand as I lay near her and said all the things I wanted to say and I told her not to be afraid, that I loved her, that all of us would be okay, and it was okay to let go and be at peace. I woke up at 3 a.m. I could tell her breathing had changed and was now slow with long pauses between breaths. I put my head on her chest and listened to her heart and felt her chest slowly rise and fall. By 3:40 a.m. she had breathed her last breath. This incredible woman, my wife, was finally home.

Exactly three years earlier on January 31, 2014, her father had died at about 12:30 a.m.

I will do my best to share what I have been going through since she passed. That will be my next effort.