Love IS All Around #100HappyDays

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This post is way too long in coming; but, it’s been something that’s been in my head and in my heart for quite awhile now.

We are finally getting back to some semblance of a routine. Dave went back to work last Thursday, and he is really starting to look and feel more like himself. It’s been amazing to think that he went into the hospital before Christmas at least feeling fine, only to go through such a nightmare after the surgery.

Before that first surgery, my friend, Jennifer (you may know her as @LittleYawps) decided to do “something.”

Jen was raised Catholic, and in the Catholic faith, there is a tradition when a child is born. The congregation holds its hands out as if over the head of that baby and the priest says a prayer. She thought that it might be helpful to do something similar for Dave and our family.

She reached out to friends of ours through Twitter and Facebook. She enlisted the help of my friend, Lesley, who contacted my mom. The word went out across the country and around the world.

Each person was to trace their hand onto a piece of paper, cardboard or whatever struck their fancy. They were to decorate the hands and then put them in the mail to us.

My mother got our kids involved, and though it was weird that our kids paid so much attention to the mail delivery all of the sudden, I just chalked it up to the fact that Isabel is always ordering another hoodie, or that Ben’s always buying another phone case. They hid the envelopes that started arriving, never letting on that anything was going on.

The Sunday before surgery, we went over to my parents’ house for dinner. Mom pulled out stacks of envelopes. First, she had us read a copy of Jennifer’s original email that had come through Lesley. That was enough to make me sniffle.

Next, we started opening envelopes.

You can’t imagine how touching it was…to see all of these lovely hands, decorated with crayons, markers, glitter, beads, stickers…you name it. All of them had messages of love and well wishes for Dave and for our family.

It took quite a while for me to stop crying. I just kept looking at them, and thinking about the time that everyone put into them.

Over the next several days, more and more hands came. It was like wave after wave of well wishes.

The hands came from all over the U.S., and from around the world. There was one that came anonymously, and the postmark is smudged, so I’m not sure who it’s from. All I know is that someone took the time to trace their delicate hand and cover it with love.

There are so many hands. All I can say is, “Good job, Team!” All of that love and all of those good wishes and prayers worked. Dave’s surgeon is confident that they got everything and that Dave is essentially cancer-free. I am grateful for every single fleck of glitter, every sticker, every tiny little Brownie hand, every single beautiful drawing and every hand.

To Jennifer, who started this shower of love, I just have to say…you have a friend for life, my dear. Not only did the hands work for Dave, they comforted me and got me through some very dark moments. I carried them with me the whole time I was going back and forth to the hospital. At night, I’d spread them out here on the bed and look at them and cry with gratitude. I’d pull them out at the hospital and Dave and I would look at them together.

To those that still have a tendency to belittle the friendships that you can make with people through social media, people who you may never get to meet “in real life,” I have only this to say: You are cheating yourself out of knowing some truly incredible people. Distance is merely an inconvenience and does not affect the friendships that I have made.

What lucky, lucky people Dave and I are. Thank you…from the bottoms of our hearts.

Love,

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We Now Return You to Our Regularly Scheduled Program #100HappyDays

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It’s been a long two months since Dave’s surgery.  I can hardly believe that it’s only been two months; but, yesterday, Dave went back to work.

When he first got out of the hospital, he was very weak and tired easily.  He was on a fiber-restricted diet, as Dr. Koep wanted to play it very safe.  He didn’t want to risk any perforations in Dave’s colon.

When all was said and done, Dave was discharged from the hospital with two new incisions, the bigger one about two inches long, open to his abdomen.  Because it was still draining copious amounts of fluid, an ostomy bag was placed over the open wound.  That last day at the hospital, we were given a lesson in would care and changing out the bag.  Fortunately, the nursing supervisor got on the phone with our insurance company and we were grateful to know that our insurance covered home health and visits by a nurse.  I’m not going to lie.  If I’d had to help Dave take care of the incision, I would have; but, it would have been rough.

Dave got to leave the hospital in time for the Super Bowl party at my parents’ house.  Friends of the family, my aunt & uncle, and my cousin, Tom, were all there.  I think that they were shocked at how drawn Dave looked.  They hadn’t seen him since before the first surgery.

Within a couple of days after the first nurse’s visit, the incision stopped putting out as much fluid and Dave was able to revert to bandages.  Dr. Koep pronounced Dave good to go.  His blood levels were back to normal and the incision was healing nicely.

The surgeon’s office gave Dave a return to work slip and wished us well.

For the past two weeks, Dave has steadily improved.  He began to feel significantly better, and last week, he turned a corner.  His boss, Steve, had flown out from Minnesota, and he made a point to drive across town and take us to dinner.  He’s a great guy, and really cares about Dave.  On Friday, Steve organized a team lunch.  Dave drove in to work, and spent time with his coworkers.  It was a good way to dip his foot back into work.  The night before, as we finished dinner, Dave said,

“I think that I’m getting a migraine.”

I told him that I wasn’t surprised.  There was a lot of anxiety, emotion and excitement wrapped up in going back to work after all that he’s been through.

Yesterday morning, we jumped right back into our normal routine.  When Dave came out of the bathroom after his shower, he pulled on his work uniform.  He was swimming in it!  Throughout this ordeal, Dave has lost forty-five or fifty pounds.  He’s going to need new clothes.

He texted me a couple of times throughout the day yesterday.  It was good for him to get back.  He was surprised and gratified to find out how many people were glad to see him and had been worried about him.

That’s really something…finding love and support from not just those close to you; but, to also get messages of caring and concern from friends around the globe.

There will be some follow-up appointments here in the near future; but, for now, we are so, so glad to be able to say that Dave is cancer free.

Dave the Survivor

 

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One Step Forward, Two Steps Sideways

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Today was a tough day. It shouldn’t have been, as Dave is definitely improving; but, we both were emotional and weepy all day.

When I got there this morning, Dave was looking and feeling better. He’s not in any pain, and the anti-nausea medication that he’s been getting has kept him comfortable. Dr. Koep came in shortly after I arrived, and promptly stated poking a Q-Tip into the end of the smaller incision. That’s kind of disturbing to watch. He is pleased with Dave’s progress. The abdomen isn’t hard and the wounds look good. He did say that the fluid draining out of the larger incision needs to run clear, as opposed to the color of beef broth. Yes. That’s gross, but it’s even worse, considering Dave is on a clear liquid diet, and his only meal choices right now are BEEF BROTH, chicken broth or vegetable broth.

Dave will have to stay on a liquid diet for awhile longer, as Dr. Koep doesn’t want anything disturbing the healing process in the bowels.

Once Dr. Koep left, I got a bit teary. It is very obvious that tomorrow is way too soon to think about Dave coming home. Neither of us want to rush anything, but it’s hard, just the same. It’s so far away…it can take an hour to an hour and a half to get there in the morning, and to get home at night. Throughout the day, his nurses would empty the drain and Dave would say, “There’s not much there! That’s good!” Except that it is still putting out a lot of fluid. They just emptied it more often today, so there wasn’t as much each time. It’s going to take several more days to change color.

Throughout the morning, Dave tried to nap, but that’s almost impossible in the hospital. He’d been without a roommate since early the day before, and I’ll admit, that made life easier. In addition to having more space, the room was brighter. Dave could see the window, and could move more freely. I wasn’t crammed into a small corner. Dave could nod off, and would sleep for small stretches.

Before lunch, a staff psychologist came in. I offered to step out; but, Dave wanted me to stay. At first, he was fairly hesitant to talk. As he got going, though, he really got his money’s worth. It was good for both of us. There is so much to this whole experience. It is hard for Dave to be so helpless, and to have so little control over his body and his emotions. He has always been very meticulous about hygiene, and when you need help to get up and go to the bathroom, when you can’t shower without undergoing a major production, when you’re too weak to make yourself comfortable in bed, it is incredibly frustrating.

After lunch, Dave decided that he wanted to try to shower. We agreed that would make him feel much better. We had to wait, as there was a lot of commotion on the floor…people being discharged, new patients coming in, and unfortunately, a new roommate for Dave. It’s amazing to me. There are signs all over stating that the hours between 2:00 and 4:00 each day are designated as quiet time. You’d never know it, as that’s when things seem to be the loudest and most chaotic.

The new roommate is a man who appears to be about our age. His liver is apparently in very bad shape and he’s going to need a transplant. Immediately upon arrival, I was kicked out, as they had to take some X-rays. With the roommate, there is also a wife, and several family members and friends who all feel that it’s appropriate to camp out, bring in all kinds of food and talk loudly. This set my teeth on edge, and I had to take a break. I find myself, more times than I care to admit, locked in one of the little bathrooms. I’ve cried and cried and cried in there. It just infuriates me to find how inconsiderate people can be. When the last roommate. Jim, left, his daughter pulled over the chair that they’d appropriated from somewhere. It’s more comfortable than the standard chairs in the rooms. She made a ‘gift’ of it to me, and I purposely left my jacket on it when I left tonight, so that nobody would take it!

Once the roommate had moved in, we were able to get Dave ready for a shower. Poor Dave. Seeing his own body is such a shock. He has the great big scar that goes from one side of his body to the other; and, now, he’s got two open wounds…the bigger one has a circular bandage with a plastic bag piece attached. It collects all of the fluid that drains, and has a Velcro close at the bottom. It’s actually pretty ingenious. So much better than pads or bandages that would soak through and would have to be continuously pulled off of the skin. It does make Dave very upset. He keeps saying that he is broken, and can’t get to that place mentally when he will be healed and will feel normal again.

Once he’d showered, and his nurse had redone the smaller bandage, Dave felt refreshed. That does wonders for anyone in that type of situation. I had just left the hospital when Dave texted. They’d gotten the order to discontinue one of the antibiotics…the one that made him feel so nauseated. That’s good news. An order was also placed for some sort of supplement with his meal…maybe an Ensure or something.

It took over an hour and half to get home this evening. I wanted to spend some time with the kids, as I worry about them, too. We ate dinner and talked about their dad, and about school. Thank goodness our kids are older. I can’t imagine trying to do this with little kids.

Later, My mom called. I normally call her on the way home; but, I was perilously close to falling apart, and I didn’t have the energy for that while driving. I can’t tell if it’s sad that I am the age that I am, and still cry to my mommy; or, that I’m the luckiest girl to be able to do that with my mom. Maybe a bit of both. She keeps asking me what she can do to help me. There isn’t anything. We just have to wait for Dave to recover. That is happening…it just takes time.

I think that one of Dave’s coworkers is going to stop in tomorrow. That will be good for Dave. We got a call on Friday from the disability folks for his company. His leave was supposed to end on Sunday and he was supposed to be back at work on Monday. Dave had to call them this morning to let them know about this complication.

I am exhausted. I do a lot of the little stuff for Dave…stuff that nurses could do, but that we both know he’s more comfortable with me doing. I am hoping that sleep will come quickly. The big dog is snoring down alongside the bed, and the kids have settled down for the night.

Here’s hoping that tomorrow will bring progress and that Dave will be feeling that much better.

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Pink Lollipop Sponges

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Surprisingly, I can’t sleep. It’s almost 11:00 on Friday night, the end of a long, scary, emotional week. The dogs are stretched out alongside the bed, snoring. Both kids have watched their last YouTube videos and have faded off to sleep.

I’m hoping that Dave is asleep. If anyone deserves some rest, it’s that man.

When I got to the hospital this morning, he was awake, and had slept for a few hours, thanks to the morphine & mix of anti-nausea medications. He was several hours into the no liquids before surgery period, and was becoming increasingly uncomfortable and agitated. The night nurse had given him mouth swabs. They look like little pink lollipops, but are sticks with a piece of foam on the end. You dip them into a little cup of water, and moisten your mouth with them. It’s not a lot of liquid; but, they provided some relief to the cottonmouth that was driving Dave a little nutty.
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Dave’s abdomen was becoming warmer and there was definite pressure building up. He was experiencing a lot of discomfort; and as the hours passed, he was becoming more and more anxious.

Originally, we were told that they would take Dave down to pre-op at about 1:00 or 1:30. They actually showed up for him right as my mother arrived, at 11:30. While we were surprised, we were glad, as the sooner he went in, the sooner he’d be done.

We went with him, and Isabel met us in pre-op. It took quite a while before he actually went into surgery. To manage expectations, I asked the nurse how long they expected the surgery to least. She said that the OR was booked for two and a half hours. It was a long wait, sitting there. I was glad that Isabel and Mom were with me. Poor Dave was so uncomfortable that it was better if we just let him rest quietly. At one point, Dave needed a minute, so the three of us stepped out of the bay. As we were standing there, a little, short guy walked past in a Seattle Seahawks jersey. My mother waited until he walked pat us and whispered, “Boo! Go BRONCOS!” He made a flip remark, and Mom just mumbled something about the Seahawks getting the crap beat out of them. How about that? My mom starting shit in pre-op!

Dr. Koep came in, right out of another surgery. He needed a few minutes to recharge, and then was ready to go. We kissed Dave good-bye and checked in with the nurse in the waiting room. We figured that we’d be there for awhile, so the three of us made our way to the cafeteria for a late lunch.

After lunch, Mom started to get worn down. She went home and Isabel and I headed back to the waiting area. We rounded the corner to see Dr. Koep with the nurse.

She said, “There they are!”

Dr. Koep came over and said that they were all done. They’d been in there for less than an hour. We were thrilled. It took another hour or so to get him out of recovery and back to his room. Isabel and I got upstairs to his gurney parked in front of his room. He was able to walk in and get onto the bed.

Dr. Koep said that the infection was most likely caused from a perforated colon. Some bacteria might have leaked. He did say that Dave’s liver looks really good. He made two incisions over the original incision, and cleaned everything out.

When Dave got back to his room, he said that he already felt better…no pressure in the abdomen. Once he was settled, and he was allowed some ice chips, Isabel and I decided to leave. The idea was that he’d sleep better if he didn’t have us hovering. He was alert, and a bit chatty…much more himself.

I am sincerely hoping that when I get there tomorrow, he will feel significantly better.

The picture above is a little angel pin. It was my grandmother’s, bought as a reminder of Isabel as a baby. She had baby orangutan hair. It stood up all of the time. I needed a little bit of my grandmother.

I’m finally fading, so I’m going to call it a night.

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Losing It (Part II)

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Thursday. It’s hard to remember what day it is. Thankfully, they write the day and date on the board in Dave’s hospital room.

Yesterday started out rocky. Dave was exhausted, and was still running a fever. He is emotionally shredded, mostly because he’s not getting decent rest. I had slept a grand total of two hours, myself, the night before, so I wasn’t in great shape, either. Fortunately, the nurse for the day, Seung, was a wonderfully kind, patient man. He was so good with both of us. He suggested an anti-anxiety medication, because he could see that Dave was sitting here, just stewing over everything. It was turned down by the doctor, over concerns about depressing respiration, so Seung tried to find other things to occupy Dave’s mind. He suggested that we turn on the television, and talked football throughout the day. Too bad for him…he’s a Niners fan.

Dave was able to eat lunch, and was doing ok when I left to pick up Ben. I hoped that we’d both sleep better last night. I fell asleep at about 8:30, and one of the kids must have turned off the television. I don’t remember another thing until 4:45.

When I got to the hospital this morning, I found that Dave had had a rough night. They are bombing his system with two different antibiotics, and one of them nauseates him. He hadn’t kept anything down and had been sick all night. He hadn’t slept, either.

They gave him a second type of anti-nausea medication, and he tried to eat a little bit of cereal, but that didn’t sit well, either.

Today’s nurse normally works on the oncology floor. She said their specialty is nausea. (I would hope she was kidding. Yuck.). She’s checking on the possibility of Atavan. Though it’s an anti-anxiety medication, it is also used for nausea. That would be a two for one, in my book. Here’s hoping that they approve it.

Dr. Koep stopped in this morning, as well. Dave’s abdomen is red; but, it’s not draining like it had before, and it’s not hot. Dr. Koep spent some time checking the incisions. About the time he got what looked like really long Q-Tips and started poking them into the incision, I had to step out. Dr. Koep said that he’d be by every day, to check on him. That’s great; but, it doesn’t give us much indication as to when we can expect Dave to be discharged. We have a way to go.

We requested and received some earplugs. Dave’s popped them in and seems to have dozed off. His mom is coming by at some point, so the more he rests before that, the better.

What a long road this is. At the same time, though, I know that it’s not forever. They just need to knock the infection down and he’ll be on the road to recovery. His current roommate is an older gentlemen who has some very serious conditions. It sounds like they have to make plans for end of life details. It’s hard to be bitchy about noise levels with all of the activity on his side…there is a constant stream of specialists, palliative care specialists, phlebotomist, nutritionists, etc., coming in. They aren’t quiet, unfortunately. We’re going home. He is not.

This hospital is a very busy one. It’s a magnet hospital, and they are at maximum occupancy. We’ve had wonderful nurses, assistants, doctors…even the sweet lady who cleans the room every day. We are fortunate in our insurance, our jobs, and our situation. We know this.

We are more fortunate in the love and support that floods in from every corner. It makes me weepy when I think about it. From the interaction on social media, to the emails, texts and phone calls, to the pretty lights that my mom’s next door neighbor has hung in her kitchen window for Dave…I cannot express how much it means to us.

Though I’m a bit of a basket case these days, our kids are the pride of my life. They are going to school, Izzy is working, and they just keep things rolling at home. It’s in times like this that I am glad that we had our kids when we were young. Having older kids is a lot easier in times of crisis.

As the minutes and hours tick by, I know that we are that much closer to life returning to normal.

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Image credit – Washington National Cathedral

Losing it.

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Well, here we are again. 2014 was supposed to be a BETTER year; but, so far, I am unimpressed.

Dave’s recovery has been slow. It is entirely possible that we brought him home too soon. The first several days were tough, indeed. There is a lot to be said for nurses, interns and caregivers in general. There is an intimacy to taking care of someone when they are sick and hurting. Inhibitions are forgotten, and privacy has gone out the window. When you have been married for as long as Dave and I have, one would imagine that there is not much that we haven’t shared. One would be surprised to know that isn’t the case. Dave is an incredibly private person. His hygiene habits are impeccable and they are something we both take care of out of respect for each other.

We had several late nights when Dave first came home. There were things that he couldn’t do for himself, and it pained him to ask for help. It’s funny. I can’t stand watching the blood and guts movies that people watch, and just talking about cuts, or stitches makes my stomach roll. When I’m in the moment, though, and something needs to be done, I can change dressings, empty drain ports, clean up wounds…anything that needs to be done.. It’s afterwards that I fall apart and cry in the shower.

They gave Dave oxycodone, for pain, after leaving the hospital. For a man who BARELY takes aspirin, and will only use one kind of cold medicine, regardless of the indications or symptoms, this was like giving your neighbor’s kid acid. Poor Dave. He started hallucinating. If he tried to sleep, he’d have horrible, grotesque nightmares. By the time we got to the surgeon’s office that Monday before Christmas, Dave said the floor looked like bubbling tar, with alphabet noodles floating in it.

There had been so many things that Dave just couldn’t do for himself during those first couple of days that the hallucinations and physical discomfort were wearing us both down quickly. Dave begged first the resident who came in, and then the surgeon, to please, please change his medications, and I nodded vigorously. The resident said, “You know, people pay a LOT of money to get their hands on that stuff.” Good for them, jerk. Give us something else…something less trippy!

After Dave got his drain ports out, ten days after surgery, we thought that he would start recovering…slowly at first, and then there would come a time when he’d turn a corner and recovery would speed up exponentially. It did start out that way; but, soon, we were three weeks out from surgery, four weeks out…the corner was still a long way off. Dave was getting way too tired with even the least bit of activity. He started getting chills and his heart would race, even when he’d been napping. He’d also developed a weird cough.

Dave had talked to a nurse from our insurance company about a week after he got home. She had reassured him that some of the stuff he’d felt initially was normal. He hadn’t talked to her again, and wasn’t interested in calling. I began pushing to get him to at least consider an appointment with our family doctor, and had convinced him this past weekend to let me call and get an appointment.

On Sunday, we went to watch the Broncos game with my parents. Dave was exhausted from the short trip we’d made to the grocery store the day before. By the time the game was over, Dave started getting chills, and his temperature was climbing. When we got home, he stretched out on the couch and took a nap. He woke up again just as I was getting ready to go to bed. His temperature was 102. That did it. I insisted we go to the ER. I was worried he was developing pneumonia.

The hospital across the way from us has a busy emergency room, and Sunday night at 11:00 was no different. It took hours for them to get blood taken, scans done, or a doctor to come in. They determined that Dave probably had an abscess, and that they needed to send him back to Good Sam to be treated by his liver specialist. It took until 6:00 Monday morning to get a bed, and get him into an ambulance. I followed behind, only getting separated when the ambulance jumped into the carpool lane.

At Good Sam, more tests were done, and we saw three different doctors over the course of eight hours. At about 3:00, in the midst of a flurry of activity for Dave’s roommate, a team showed up with a gurney to take Dave down to put in drains. Dave flipped out, I flipped out, we were both sobbing, sloppy wrecks. I made it abundantly clear that Dave wasn’t going anywhere until we spoke to a doctor. I was perilously close to pulling a Shirley MacLaine, “GIVE. MY. HUSBAND. A. SHOT!!!!” Dave was adamant that whatever they did, he be sedated. I needed to know WHAT they were going to do. The idea of drain ports had made Dave nearly inconsolable. The poor intern who’d come in with the transport team and had said the word, “drain,” looked panicked. I’m sure she hadn’t expected that sort of reception.she paged the doctor, and we got to ask several questions. I had to apologize to her later. She was quite graceful about it.

We calmed down, they took Dave downstairs, and put him under. They inserted a small, different type of drain, and cleaned out the area that was infected. An hour and a half later, Dave was still flying, with pupils like marbles. He was babbling to the girls that brought him back up, and said, “Tell everybody downstairs I had fun!”

Ugh.

As soon as he was settled, I took off for home. I fell into bed by 7:30, and was dead to the world until my alarm this morning.

Dave was still running a fever throughout the day today. I would imagine he’ll be there until at least Thursday, maybe Friday.

His mood is fragile. He’s very disappointed, and I think that the seriousness of all of this has finally hit him. This is a set-back, in his mind. Combined with finally being vulnerable to all of the emotions of this past year, it has hit him hard.

With all of this, my mother had a close call a couple of weeks ago, too. She’d been feeling off for about six months. She finally got some new blood work done right before Christmas. We’d attributed the low energy levels and general malaise to depression. Her doctor discovered abnormalities in her blood. What’s more, her kidneys were shutting down and she was in Stage 4 kidney failure! She was immediately hospitalized and it took a couple of days to figure out what was going on. Turned out that she was experiencing side effects from her blood pressure medication.

The good news is that they’ve figured it out and I don’t have to see if I’m a donor match. The bad news is that it takes a while to recover.

I’ve decided that 2014 is one hell of a hangover from 2013. I couldn’t wait to get into the new year and onto to happier healthy friends and family. Now, I just want to get out of this stupid month.

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Silent Night

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It’s just twilight on Christmas Eve. Isabel is at work, and Ben’s down in his room, probably watching YouTube videos. Earlier today, my parents came by to deliver presents, and to see Dave first-hand. We usually spend Christmas Eve with them, but we aren’t going anywhere right now.

On my dad’s suggestion, Ben and I ran to Cabela’s and got a reclining patio chair for Dave. He hasn’t been able to get comfortable on the couch, and can’t lay flat in bed. Once we got him snuggled in, made him some dinner, and got his next round of meds, I turned off the television, and dimmed all of the lights except those on the tree. Dave is finally dozing. The chair is big enough that he can stretch out, he’s flat, and his feet are up.

Santa can’t come until later anyway, so I’m going to let him sleep.

Though it doesn’t feel much like our traditional Christmas, I am just so glad to have Dave home. This has been a rough, scary year, capped by a very traumatic surgery. Dave is exhausted and emotional, and frankly…we all are.

I am so grateful to have this time to be with him. My partner, Marcie, took over enrollment duties for a couple of our biggest clients; and, with the help of my co-worker, Nicole, made sure that I didn’t have to do anything but concentrate on Dave and the kids. She also fired a client that has been one of the most high-maintenance, stress-inducing clients we’ve ever had. At a time when clients equal important revenue for our little company, I so admire her for this.

I am also grateful for every card, text, email, phone call, hand print and kind thought that has been extended to me throughout this journey. I am a very fortunate woman, in my friends and family. I can only hope to be deserving of the love that has been showered upon me and upon my family.

Tonight, I wish each of you a joyful holiday season, and a happy, healthy, prosperous new year.

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