As you all probably know by now, Monica, my wife, the mother of my children, my life partner, my soul mate passed on at 9:51PM Tuesday June 26, 2007. She was 42 years old. She passed peacefully with sons Joey and Jamie, her mom, family friend Michelle H., her loving aunt Helga M. and myself by her side.

In the coming days, I will write the final entries to this journal. It is time for me to complete this effort. Please know that I will need a bit of time in the coming days to complete all of the tasks necessary for me to make sure that we are all able to celebrate her life and to bring closure to her passing. Given that, a couple of the entries may be late. I have a lot of stuff to do to organize her Celebration of Life. I want to make sure that all of you who wish to say so long get that chance. I also need to get back the part of raising my two sons without their loving mother. It will all fall into place.

I am confident that this task will be easier just from the level of literally global support that we have received since this web site was put up. You all need to remember though, that Monica's entire journey lasted six and half years. The short period of time in which we opened our life to you was well received. I am humbled by the comments that I have received, and I am honored to have played a part in a healing process that goes beyond our life story.

Some day, we will rid ourselves of this bastard demon. The more people that are touched by stories such as ours, the stronger the motivation to find a cure. Had this site been up since day one, it would have reached all 50 states, I just know it. Maybe over the course of time, my personal dream of reaching every 50 states will be realized. In the meantime, I honestly did my best to give you the final three months of her journey. At times I felt as though I just couldn't do it any more. But something kept me going...even when she was actively dying. But it all worked out. All is good. I wish I could have given you more, but I just didn't get the sign from above to do it until three months ago when I got the indication that her final days were coming. Well, it is what it is. The journey that now waits before me begins today. My new mission is to see to it that Monica's dreams are realized. It was her wish to see Joey and Jamie grow up to graduate from college, start their own families and love them as she loved them. My role in that dream is to give them to tools, support and love that they need to make it happen. You all have given me the strength to move forward.

I want to thank all of you here and now for all that you have given us. I hope to get the opportunity to meet you all face to face in the coming days and to give you all an embrace of peace. Monica will live on in the hearts and souls of us all. She not only shaped our lives, she shaped the lives of thousands of others. By reading this site regularly, she has now become a part of you. Funny how that works. Leave that to Monica's infectious smile. Leave it to her wit. And leave it to her bravery.

Please continue to check back once in a while. I don't know how much longer I will continue to write daily entries. I am thinking that I will cease my writing the day of Monica's Celebration of Life. At that point, we will all be caught up and we will all have an excuse to move on with our lives.

I have reached the objective of giving people a first-hand account of the ravages of this God-damned disease. It was my intent to show you just how evil it can be. But even through all of the pain, the disease failed in it's mission. As I have said before, it can take you body, but it cannot take you soul. There is victory in her passing. Cancer has not destroyed the memories, the love and this family.

Peace to you all.

One of my most favorite shots
of Monica and I - August 2005

We Cooper boys are trying our best to resume some sort of "normalcy" to our broken lives. As I write, Jamie is off with Tom P. and his son Noah to hunt down some hapless bluefish or striped bass in the Chesapeake Bay. Joey is outside doing his best to break in his new pair of skate shoes, and later this afternoon, I will be off to play an adult hockey game with my "old guys" team in Fairfax. As I have said before, it is what we must do. Monica would have wanted it no other way.

Next week, I will have to start the process of notifying all of our financial, insurance and whomever else needs to be notified. Monday will be a long day, I am sure. While the list of parties to notify is long, Monica's pre-death legal preparation will save me a ton of time getting all of her business matters in order.

For now though, it's time to take a break and attempt to get back into life as best as we possibly can.

Friday June 29

It's been a couple of days since I've last written an entry in this log. It's been for good reason. I have simply been pounded with things to do involving her CoL party (and it will be a serious party - as she wanted), her cremation, and her other necessary final arrangements and tasks.

While my days have been busy, my nights have been quiet. Too quiet at times. The boys are getting on with their lives as kids must do. It's OK. But does make my evenings lonely. It is finally settling in that Monica is gone.

Last night was tough as I finally took the time to sit down and read the many cards and letters that Monica never saw. It's OK, though. I know that over the next few days, weeks and years, I will have many times like last night when the house will be empty and quiet. I will take those times to talk to Monica to tell her how much she is missed.

I love you, baby. I always will.

Wednesday June 27

(I have moved the plans for Monica's Celebration of Life Service above. Please move up the page to see those plans. They are the absolute latest)

As you can all imagine today was just a blur for me. However, there was a wonderful sense of peace in the house. The boys and I got our best night sleep in over three weeks. We know that there will come a time when the silence will be deafening, but for now, we savor the peace. We know Monica's spirit is with us. It is she who is embracing us in this shroud of comfort. All is good.

I do have to let you know that even though Monica's last moments were characterized by a pounding heart and laborious breathing, her passing was peaceful and merciful. I must also pass along the message to you that shortly after she passed, she gave us that endearing Monica smile. Joey and Jamie noticed it first. Within moments of her passing, they both said, "Look dad, she's smiling." I couldn't believe my eyes. It was undeniable. I thought to myself, "At last, she can smile." She will smile now into eternity. You can imagine the comfort that my boys and I got from that moment in time for it told us all that she was happy. She is now with the Lord...and we will hold that moment in time in our memory forever.

All is good.

Tuesday June 26

9:51PM: Monica has passed.

I would like to request that you hold off on calling us or contacting us for the next few days. As you can all probably understand, we are all physically and emotionally drained. It will probably take a few days for us to regroup.

Over the course of the next few days, I will be posting information about her Celebration of Life service. As of this writing, we are looking at Saturday July 7. That is tentative, but likely.

Thank you all ahead of time for your words of condolence. For now though we would like some private time.

As always, we thank you all for your support through this past month. It really has helped.

8:30PM: Things have progressed quickly since this morning. Monica is now probably within hours of passing. Her lungs are slowly filling with fluid making breathing congested and laborious. It is just a matter of time.

We have done our best to keep her comfortable. We believe that she is, but she is succumbing fast to the fluid in her lungs. We don't expect her to last the night.

She is surrounded right now with all of our immediate family. We have all asked her to let go. There is no more need to fight. We have given her permission to pass. It is now up to her to let go.

I am now confident in saying that the next entry that I make this evening will be pronouncement to the world that our hero has passed.

1:00PM: It's been a tough 48 hours for the Cooper family as Monica's condition continues to worsen. She appears to be comfortable although she shows occasional signs of physical agitation - which could be anything from breakthrough pain to muscle spasms - each signs of the approach of death. We have upped her morphine from once every six hours to once an hour. This helps her with the pain, the muscle spasms and her breathing, which is becoming more labored.

She is still able to communicate non-verbally, but that comes as goes with her fluctuating levels of consciousness.

We have someone by her side 24x7 now. At some point, things will begin to shutdown systematically. And when that does happen, we will gather to be by her side.

I will revisit this entry later this afternoon.

Monday June 25

8:00PM: Our hero has been resting comfortably since earlier this morning. Her pain is being managed effectively and she is resting quietly. Since the news got out this AM, she has received a steady stream of visitors today (mostly family and close friends). While she is no longer able to verbally communicate, she knows who is in the room. We have seen smiles from her letting us know that she knows. It's comforting for all parties.

Monica's condition will likely continue to deteriorate as the hours pass, but we will continue to speak to her, hold her had and tell her that all is good. All that we can now hope for is a lasting peaceful sleep.

Our two sons have been doing well. Each deals with the situation in his own way though. Joey has been very close to Monica's side almost the entire time that she has been home. It is where he wants to be. Jamie, on the other hand is handling his strain by spending up-time with his friends. Yes, he is running to some extent, but believe it or not he is still connected. He knows what's going on. He just doesn't want to deal with it head on. It's OK. He's 11. It's how he chooses to deal with the impending loss of his mom. He is doing much better than last week, but it will take him a bit longer to grasp the full meaning of her passing. Both boys love their mother dearly and they both hate to see what is unfolding before them, but they know it is what needs to be.

As for me, I'm admittedly frazzled. I haven't slept for more than three hours in a stretch since last week. Part of it is Monica's schedule and part of it is the adrenaline that is driving me to stay the course and complete the mission. My time will come, but for now, I have to make sure that everything stays together. I can't stop now. My time with her grows shorter. Sleep can wait.

10:00AM: It with heavy heart that I must tell you all now that Monica is probably hours away from slipping into a coma. She is no longer able to walk or to speak. She does know when we are present, but the life force that has kept her in the game for so long in now breaking down. She has moments of awareness, but it is clearly evident that she is now in what is called "the state of active dying."

As you can all easily imagine, it has been a very emotionally draining morning thus far. Monica has recieved visits from her mom, Aunt Helga, and Sage. We are expecting more visitors as the day progresses. Even though this is truly a sad day, it is finally time to say goodbye. Our hero has suffered for too long.

Before you read any more of this blog, please understand that even though I have put three thumbs down as an indicator of a mega-sucky day, it really is a good day. It is a peaceful day. All of Monica's loved ones are here and we are all in the process of seeing her off to a better place. We are all at peace with what is about to transpire. It is what must happen.

Sunday June 24

I have to confess to you all that I write this day's entry in hindsight. By the time I was able to have a few moments to write about the day, I was simply too exhausted to make the effort.

It is with sad heart that I must tell you that this day will always be remembered as Monica's final rally day.

The day was pretty much started out like the past few. Our hero would sleep in apparent comfort, then all of the sudden perk up either to walk to the bathroom or spend time with the person who was "on call."

In the early evening Monica perked up from a good nap and demanded to go downstairs for something to eat. What I am about to describe is typical Monica.

As you have all certainly gathered from my previous entries, Monica is as determined as any indivual can be. Her will to remain with us screams from my earlier entires. Today was like all of the others in that respect.

People on the outside see her actions as sheer determination, we, however see most of it as classic Monica stubborness. Just ask her mom. With our hero, nothing would stand in the way of her accomplishing a specific task even if it meant putting herself in deeper trouble. She has lived her life these past few years with that driving force, and she continues to show it well into the progression of her disease.

Tonight, she was absolutely determined to spend the night downstairs with the boys. As a family once again, we sat down and watched "School of Rock" on the TV. It was wonderful having her sit down with us, but I kind of had that feeling that she was pushing things a little too hard. "So," she started with a matter of fact tone, "What did you guys do today?" I have to admit that we nearly broke about the place. If it wasn't for that heavily sedated look in her eyes, it would have been passable. Nope, not for us. We rolled with laughter. She looked at us as if to say "What?". "Never mind, mom. We all got hair cuts today." She gave us that patented stoned smile. It was simply incredible.

Our family time was cut way too short as Monica soon dropped off into slumber half way through the movie. I walked her back up the stairs and got her situated for bed. At about 10PM she was down for the count.

Sunday June 24 will be always be remembered as the day that she spent her last coherent hours with we Cooper boys...and no one else. I will cherish this night forever.

Saturday June 23

Just as we have seen in the past week, Monica is able to rally after a downer of a day. But yet again, even though she is able to rally for a while, she ends up paying a heavy price or her burst of energy. Early this afternoon, our hero received a short visit from her close friend Vicki M. Ever wanting to be the hostess that she is at heart, she demanded to go downstairs to our three season room to entertain. Our hero did her best to keep the "party" going, but after about 30 minutes we could all see in her eyes that she was fading fast.

After Monica's visit with Vicki, I walked Monica back up stairs, got her back into bed and loaded her up on morphine. It's kind of sad how we healthy folks don't even consider walking stairs a minor physical task, for our hero, simply going down then up those 13 stairs results in severe breaththrough pain and a dire need for fast-acting pain meds and oxygen.

For some reason, my latest episode of visit emergency triage made me think back to all of our past Avon Walks. Every day, towards the end of that day's stretch of pavement, we would always seem to come across one of those annoying cheering station signs that read, "No Whining!" I now know with ever increasing clarity what those simple two words now mean. As the miles accumulated we would all bitterly complain about our blisters. It's all come full circle now, Monica learned the meaning of that simple phrase. She never complains any more.

You will all be comforted to hear that Monica has been able to keep up with her appetite for her favorite treat - strawberry smoothies. Today though, she wanted something different. With that in mind, I scooted down the kitchen and whipped up a simple vanilla smoothie to quench her thirst. When I gave it to her she kind of gave me that look. I could read her mind. "Where is my strawberry smoothie?" I said to her, "Please, give it a try."

After sucking down the entire glass, she looked back at me and said as clear as day that "That sucked." With the skill of a seasoned stand-up comedienne, she gave me a short pause, then expertly flashed her infectious smile. I was waiting for the infamous "Not." But the point was made. She loved it.

For the most part today was a steller day for our hero. It did have some minor physical set-backs (her muscles slip father and farther into atrophy), but we're making due with what we have...and so is she. Today, life was good.

I wish to offer a quick thanks to all of the folks who have sent us cookies and brownies. I will tell you honestly that not one has been wasted. I now have a freezer full for the days to come. My boys are digging the carb loads! Also, I need to pass along extended thanks to Cowguy for sending over a box of popcorn, bags of cookies and cards and letters from a good number of our Avon family. Cowguy and Avon peeps, you all rock!

Friday June 22

Today’s entry is a brief follow-up to yesterday’s words. I have to confess to you all that it’s getting harder and harder for me to write this blog. Monica’s condition continues to deteriorate and with it goes my will to write. I promise you all that I will do my best to keep you all “in the loop.” I owe it to each and every one of you. You have been the most incredible world of supporters anyone could ask for. It is your love for her that has kept her with us this long. I will do my best to return your gifts of love and giving...and, yes, cookies.

As of noon today, Monica is still able to verbally communicate, but her phrases are mostly short and soft in tone. It’s often hard to understand what she is saying. She does manage to blurt out some very clear words on occasion, but they are far from being the norm.

The words that we all long to hear over and over are, “I love you.” You know, it really is a linguistic gift that these three words require so little energy to speak. They are also easily mouthed. The energy that she expends uttering them us will provide us with years of fond memories and warmth. It’s kind of a form of linguistic fusion where small amounts of energy are combined to create greater amount of energy. It’s how the sun works. Ironic…don’cha think? (Now every thinks I’ve lost it.

We do not expect Monica to be able to verbally communicate much longer. It is impossible to predict when her disease will shut down her vocal abilities. Until then, we sit, wait and listen to her every spoken word. It is music that will echo through the rooms and halls of our home forever.

Given her current condition, I fear that we will no longer be scheduling any more visitors, unless you are family or hospice staff. I am sorry. Her situation has deteriorated so quickly, it even surprised everyone in her immediate support network. I will continue to read to her your emails. It is believed that even after she loses her ability to speak, she will still be able to listen. Your messages will be words of comfort, I am certain.

Thursday June 21

According to the solar calendar, today is the first day of summer. In terms of total daylight, it is the “longest” day of the year. Unfortunately, the solar calendar is not in sync with the Cooper family calendar. As Monica’s health continues to decline, the days will become figuratively longer and longer as we switch focus from assisted living to 24x7 bedside care. Our own lives will soon be consumed by her every breath. This is the natural progression of the disease. It is what we now must face. Friends and family, our hero is sliding closer to death and there is no stopping it.

Folks, there is no possible way that I can sugarcoat things anymore. Our hero is losing a little bit more ground every day. Instead of two steps forward, one step back, it is more like one step forward, two steps back. Monica continues to battle the disease as best as she is able. But as her body continues to break down, her will to live also breaks down. For the first time since she’s been home, she expressed to me that she is sorry for what has happened and that she’s tired. I told her that she has given me all that I ever wanted. There is nothing more to do. Then I told her that everything would be OK. She smiled and then slipped back into sleep.

Monica enjoys periods of alertness, yet her speech is slurred and the words that come out of her frail mouth are most often disjointed and jumbled. She winces at her inability to put two words together. It is both humiliating and frustrating. But one thing always breaks through the suffering: that classic Monica smile. You may only get one in the period of time that she is able and/or willing to communicate, but that simple smile lets us know that she is at peace. And it brings peace to us. We can’t help but smile back.

Even through her hardest moments, she still manages to surprise us with some sort of wise crack or eye roll. There will come a time though in the next few days when even those will be silenced. Until then, we will continue to laugh with her.

As I’ve told Sage and the hospice staff, I feel that I am no longer physically able to cry. Some may think that I simply too fried to exhibit emotion. I am now convinced that contrary to my physical condition, I am actually at peace. Yes, it’s true. I face losing my life partner in the next few days, but it’s actually OK. I've come to accept it. It’s come to the point where her suffering is too much to watch. I am sorry to say that most of us are now all praying for God to take her home as peacefully and as comfortably as He can.

Sometime in the next few days, she will release herself from us. She will realize that her work here is complete. At that point she will place her trust in Him and let go of us. I can only hope that it is sooner than later. Enough is enough.

Wednesday June 20

It has be been said that a good night's sleep is food for the mind, body and soul. That old adage applies to our hero, as much as it does any other person. The problem is that if the person involved has terminal cancer, the rest required to recover from a long day can mean up to two days of bed rest...or more.

Our hero rallied a bit today. With about 36 hours to recover from Monday's events, she was able to spend a little more time active with us. I have to say that she was better off than me today. I feel like I've been running on adrenaline for the past few days. I swear to you that I've slept all of about five hours in the past 36. I'm whipped. Monica was up every 90 minutes last night. I had to jump to her aid as her balance and judgement are controlled by the morphine. And just how does one return to deep sleep when he/she knows that in the next 90 minutes, it has to be done all over again. I'm getting help tonight. Monica's mom has volunteered to do short straw duty tonight. I needed that. I cannot afford to crash due to fatigue.

I have to admit to you all that yesterday scared the crap out of me. I was honestly concerned that this was going to be the last day that I would hear her voice. Thanks yesterday's "quiet" day, I once again heard her say to me that she loved me. Sage's reassurance that all she needed was rest was music to my ears. I don't know where I would be with that girl. She's been the one who has guided me through the toughest times.

Tonight, my two sisters came to visit Monica. Both live in the area so they were able to respond to my "You might want to come over now. Her window of awareness is open. No telling when she'll shut down for the night." They both appreciated being able to see Monica one more time. It is what has to be done.

Folks, this is now how I manage all of her visits. I've tried to tell myself that if I can learn her sleep, rest, and wake patterns, I will be better able to schedule visits for her. Unfortunately the disease has its own schedule. There is no such thing as a pattern. As such, I've told every single person who wishes to see her, "You had better be ready to come at a moment's notice. There are no guarantees that she will be awake when you come."

Cookie update:

Thanks to all of the folks who have answered my plea and dropped off cookies and brownies. They have all been well received. My freezer is now stacked to the gills with confections. My counters are covered with chocolate chip cookies. And my kids are all strung out on sugar. It's all good. Sugar is good food. It's what keeps us all going at light speed.

Tuesday June 19

I went to work today assuming that this day would be a repeat of yesterday. When I got home at about 4:30PM, Michelle met me at the door. I asked how our hero was doing and she said in a muted voice, "Not a good day today. Monica hasn't been out of bed yet today."

I have to admit that that threw me for a loop. I thought back to yesterday when our hero she was up and about entertaining Lori and her kids and telling me what to do. Today, she was not even willing to get out of bed for food or water. I called Sage to find out what was going on. I was scared. After talking to her for a few minutes she told me that this was all quite common. She said to me "Think about yesterday. She was up for a good portion of the day. She will now need a day or two just to recover from that."

I felt some sort of relief after talking with Sage. I trust her. She's seen this many times before.

Tonight, I asked my folks to stop by for a short visit. It's times like this when I want to make sure that all of the family has had a chance to visit her. It's getting harder and harder. At some point, she won't be able to entertain any longer.

Monday June 18

Got O2?

That was the catch phrase that I learned last January when I took Joey and Jamie to Keystone, Colorado for a long weekend of real Rocky Mountain skiing. It was then that I had the misfortune to suffer a rather severe case of altitude sickness. In a matter of 24 hours, I went from skiing my butt off to spitting up blood and gasping for air. The final two days of the trip consisted of me having an oxygen tank strapped to my head, while my kids were off skiing terrain country with our trip buddies, the Jordans.

I will never forget that trip for a variety of reasons. First, the experience of spitting up blood scared the living crap out of me. Worse so, it scared the living crap out of my kids. It wasn’t very fun for my guys to see their dad spitting up blood and being unable to walk 50 yards without gasping for breath. Second, it made me appreciate living below 14,000ft where the air is thick and rich. Last, it gave me a little taste of what my wife has had to deal with for much of the past six years. For a brief moment, I walked a few of her steps. It was then that I realized just how easy I had had it in my life. She’s had to walk that path every day of her life since February 9, 2001.

Today, Monica found out for herself the beauty of bottled oxygen. While we have had the oxygen tanks at our house ever since she came home from the hospital, we’ve never had the inkling to fire them up. Why would we? Even though she’s been cranked up on narcotics, she’s up and around. She’s taking proper care of herself. She’s eating on her own. On a whim, she decided that she would like to see what the oxygen would do for her. I fired the up the unit and I strapped the hose around her head. Within five minutes she shouted out, “I have my memory back!” While that in itself didn’t surprise me as I know first-hand the effects of oxygen, it reminded me that that we could use the oxygen at any time to give her yet another tool to “stay in the game.” What is they say about lessons learned?

Monica had the help of close family friend Lori D. and her kids Brandon and Ashley while I scooted off to work in an attempt to keep some money in the pipeline. She also had a brief visit from Sage, our terrestrial oncology angel, and our hospice nurse Debby. At about 7:30PM Monica’s mom showed up at the door with Monica’s aunt Helga, who has flown in from Austria for a three-week stay. It’s been a great day for our hero. The smile on her face today cracked through the drug-induced mold of blandness that has taken over her face. She crashed last night at about 8PM, exhausted from the day’s activity. She was once again unable to join in our Tuesday night ritual of watching “The Deadliest Catch” on the Discovery Channel. It’s OK. I’ll tell her all about it tomorrow.

OK, time for a serious request. Our cookie bin is empty! Any chance one of you local peeps can slide us a batch of fresh brownies or Tollhouse cookies?!?! Please, pretty please!

Sunday June 17

OK, folks. Before I get into my daily Monica update, I want to share with you a little history lesson. I have included for you a snippet regarding the origin of the first Father’s Day. I found this posted on the Wikipedia website.

”In the United States, the first modern Father's Day celebration was held on July 5, 1908, in Fairmont, West Virginia. It was first celebrated as a church service at Williams Memorial Methodist Episcopal Church South, now known as Central United Methodist Church. Grace Golden Clayton, who is believed to have suggested the service to the pastor, is believed to have been inspired to celebrate fathers after the deadly mine explosion in nearby Monongah the prior December. This explosion killed 361 men, many of them fathers and recent immigrants to the United States from Italy. Another possible inspiration for the service was Mother's Day, which had recently been celebrated for the first time in Grafton, West Virginia, a town about 15 miles (24 km) away.

Another driving force behind the establishment of the integration of Father's Day was Mrs. Sonora Smart Dodd, born in Creston, Washington. Her father, the Civil War veteran William Jackson Smart, as a single parent reared his six children in Spokane, Washington.”

A little additional research on my part (I know, I am such a loser) uncovered the fact that Mr. Smart raised his six children by himself after his wife died during childbirth of his sixth child.

Obviously, the parallel of Mr. Smart’s life and mine struck a chord. In the next few weeks, I will likely walk the same path as he. Now before any of you rush to say “What do you want? National Dale Day?” No. The meaning of Father’s Day is now very personal. What was most meaningful to me was the subtle reminder that others have blazed the trail before me. I used to think that Father’s Day was a meaningless Hallmark holiday. After reading these words, I will forever hold Father’s Day in a much different light.

“Enough about you. How’s our girl?” yells the crowd.

For much of the afternoon, Monica enjoyed the company of her dear friend Kathy P., who moved to a suburb of Houston, TX just a year ago. Monica and Kathy were inseparable before she moved away. The beaming smile on Monica’s face as she walked into our room said it all. “There you are.” Monica said.

Monica gets a visit from Tracy P.(left)
and Kathy P. - June 17

Monica, Kathy and neighbor Tracy P. spent the entire afternoon together sharing stories and relishing their moment together. Since I was being oozed over with girl talk, I elected to take my boys out to lunch and a movie to celebrate my day. Of course, who paid for this afternoon’s escapade? Me, of course.

It’s OK, really. My Father’s Day gift was truly Monica’s happiness. The day with my boys made it even sweeter. I will never forget this day for as long as I live.

Saturday June 16

I’m slowly getting a better feel for what Monica’s day is going to be like. I am starting to feel OK about her sleeping habits, her eating habits and her times of peak alertness. My biggest challenge continues to be her pain management. And she’s not helping me out very much with that. Here’s the problem. I have to take Monica’s cue as to what she needs and when. Yes, she wears several pain patches that give her around-the-clock relief, but she purposely (and silently) tolerates a higher level of breakthrough pain just to “stay in the game.” She reminds me of a certain kid who suffered a compound leg fracture in a hockey game and told his coach that he was fine to play. That kid was Joey. And that coach was me. That was the time when he broke both his tibia and fibula in a tournament game in Richmond. He just didn’t want to leave the game. He didn’t want to disappoint me. I wonder just where he learned that from.

Even as we collectively discover what we think is the right pattern of care for her, each new day brings a new challenge. One day we will struggle with amount of pain killer she needs. The next day we will wonder just how much food she can consume...or just what kind of food will appeal to her. And yes, every day we wonder just how much Monica will be with us in terms of mental alertness. She’s now sleeping up to 20 hours a day. Those few hours that she is awake are gifts of time that she shares with us all. At some point though, she will begin to sleep more and more. And at some point, she will not wake up. I try not to think about that right now. I can’t let it throw me off course. Like Joey, I have to stay in the game.

This is all so frustrating for her right now (and for the rest of the Cooper family). Our hero is frustrated by the fact that she can no longer interact with us as she used to. Don’t get me wrong – when she’s awake, she is mentally sharp as a tack. She listens to every word. She processes the information very carefully. What sucks is the fact that the reaction time between your question and her response can be anywhere from 10 to 30 seconds. I‘ve learned a new brand of patience that I never thought I would ever possess.

Monica is with it in terms of being able to communicate, but her outgoing enthusiasm for life is now suppressed by her meds. She shows little real emotion. She no longer laughs. She no longer cries. She no longer has the emotional ups and downs that we all experience in our day-to-day lives. It’s all the meds. I know. And to be honest, maybe it’s a gift in disguise. I would hate to see her face wracked with pain, because I know that that is what I would see if we went off the meds. There is no turning back.

I am happy to say though, that she does maintain the ability to let me know when things have gotten a little to silly. She manages to show me her disdain for poor jokes or a spoken absurdity with that patented eye roll. Any of you who have ever seen her face-to-face know exactly what I am talking about. Don’t think for a second that just because she’s whacked out on morphine that she has lost her sense of humor. Nothing gets by her.

In that respect, she reminds me of Jamie when he was a baby. Jamie was known as the baby who just sat back and watched the proceedings. He didn’t show much emotion. Nothing seemed to phase him - good or bad. Hence his early childhood nickname: “Chilly Dog.” Oh sure, he giggled and laughed as all babies do, but there was rarely a overly outward display of emotion. He just sat back and absorbed every second of what was going on.

Monica perked up tonight knowing that her best friend, Kathy P. was flying in Texas to visit with her tomorrow. The drugs may be doing their best to keep her face smileless, but she did manage to crank out a small smile when I told her that Kathy was on her way. See, the small victories are what keep moving us forward.

Folks, I have to give you this little bit of practical information. Please do not expect any more emails from her any longer. She can no longer type on a computer. She just doesn’t have the motor skills necessary to find the right keys. In fact, she can no longer read or write. So I guess that means you’re stuck with me. Somewhere between her brain and her fingers, the drugs have robbed her of ability to do the most rudimentary things.

It is where we are today. I have to say that I'll take her in any way that I can.

Friday June 15

Today started off on a bad note. Monica's sleeping habits are now changing from the "user friendly" nights of sleep and days of being awake to the exact opposite. Last night was probably the hardest days I have had in terms of being her primary caregiver. As her liver continues to swell, the pressure placed on her other organs is increasing. The most effected organs are her lungs and bladder. While her breathing is still good, it's the bladder that is suffering the most from the distension. Gravity is also playing its nasty role in this situation as the added mass in her abdomen pushes down with added force on her bladder as she rises off of the bed.

Our hero no longer has the control that she once had. Without mentioning the obvious negative side effect, the hardest part is the interruption of her (and now my) sleep patterns. She's up every 45 minutes to do what she needs to do.

To add fuel to the fire, due to the mind-altering effects of the drugs, that simple task is made even more difficult. I have to be with her every step of the way so that she doesn't end up on the floor. The fun never stops.

This afternoon things took a turn for the better. Monica was up for a couple hours of the afternoon and accepted visits from Sage and our night nurse. We crossed a major hurdle today in that her fanny pack of fun (the Dilaudid pump) was deactivated. Monica has made the vitally quality-of-life enhancing move of being freed from that little burden. Folks, we take small victories when we get them.

Our hero's pain will now be controlled by her Fentanyl patches. We hope that she will regain a bit more of her mental awareness, but time will tell. She's only been off the Dilaudid for 12 hours.

We closed out the day with Monica's mom, who has stepped up to help me during the evenings. We will probably be tag-teaming on that responsibility for however long it is necessary. As primary caregivers, we need to be mentally and physically "in the game" as much as possible. Her help was much appreciated.

OK, on to relevant topics of local supporter interest.

1) Food. Thanks goes out to all of you who have sent along food gift cards. Each is right in tune with what we Cooper boys like. The big win here is flexibility. I, or a snappy volunteer, can zip out to one of our favorite joints to pick out a tasty meal with little worries. Thanks, folks! Those are awesome.

2) Visits. I am still enforcing a very limited visitation pattern. Since our hero is now out of it for over 20 hours a day, we're being very restricitve of who she sees and for how long. You folks have to realize that you are all thought of fondly, but she can only handle so much social interaction at a time. Here's a prime example. Monica's brother Mike came out from Arizona for two days to see his sister. His visit was brief, he saw her fall all of three hours, but he got the opportunity to see her at some of her better times. Again, everyone with me...sit tight. I am hoping that things get a little better with the drug switch.

3) Miscellaneous. We received the much-anticipated family video from Becky. We are anxious to view it, but I fear that Monica's "hang time" will limit her viewing to just a few minutes at a time. While she continues to watch her favorite shows on TV, I wonder just how much sinks in.

Thursday June 14

For the first time in quite a while, I've removed the sucky day icon from this daily entry. This isn't to say that Monica's new role as a hospice patient is great news (it is and it isn't). I now judge her days by her activity level and her fighting spirit.

Today has been a good day as she rather firmly instructed me to once again drive her to one of her favorite food joints. This morning's jail break was to Starbuck's for one of her favorite snacks, Starbuck's famous Orange Creme frappuccino. That was at about 9:30AM. We were joined by Joey, who we allowed to skip one of his final days at school to be with his mom. That dude slammed a Passion Punch and three, yes three, glazed donuts. I guess he's eating for Monica. Oi!

By about 10:30 we were back home and she was back in - what I call her hospice-supplied Barcalounger. At about 3PM we received a visit from our primary hospice doctor for a brief visit and consult. We were pleased to hear that he had confirmed Monica's request to get off of the Dilaudid and start back on her oxycontin. This will help Monica to regain her mental capacities and to keep her pain in check. This is a huge win for our hero.

Our ulimate goal is comfort. If Monica can get to a point where she can interact with us free of toxicity-induced mental confusion, her remaining good days we be even better.

We hope that the next few days will bring much desired relief. If she shows signs of better "hang time" there is a reasonable likelihood that those who are in the area will get to see her. There are never any promises, nor do I want to put her in a further compromised state. So once again...everyone say it together... sit tight.

Please note that this move is most likely not permanent. At some point she probably need to return to the Dilaudid. For now, we're not thinking about that. We only look to today.

Late this afternoon Monica received a box in the mail. The box was from MooCowGuy (Best Bovine Seth J.). In it were two framed pictures. The first was of Monica and MCG sitting in the in the now famous Avon Pink Cadillac (please go back to the May archives to see that very picture). The second was of me and my new friend Mike "Baseman" Base, which was taken at the end of the DC Avon Walk. Monica and I will cherish each forever. MCG also sent a country cow doll and my personal favorite, a cow Pez dispensor! You rock, MCG!

Wednesday June 13

2:30PM - Our wonderful hospice nurse, Debby, stopped by at about 11AM to perform an assessment of Monica's condition. After she completed the assessment she briefed us all on what she intended to do for Monica. The discussion - which was co-absorbed by Sage, our best bud with Life with Cancer, focused upon a change in meds. Monica wishes to be more active in life and the Dilaudid is taking her "out of the game" far too much. We are switching gears a bit to allow Monica the same amount of pain relief with less negative side effects.

Below is the absolute latest picture of Monica. Get this folks. At 1:30PM she demanded to go to Wendy's for her vanilla Frosty! As demanded, we piled in to the suburban assault vehicle and had lunch! She was so excited to learn that she could live better. We knew it could be done. That is the blessing of hospice. We just had to celebrate this great event.

Monica piles into our suburban assault vehicle
with her portable Dilaudid pump. You can't see it here, but she's
been licking her lips in eager anticipation of a vanilla Frosty
June 13

Now before you all relish in this minor miracle, know that that little adventure took a lot out of her. She is now upstairs resting from her sprint to Wendy's.

So, many of you are probably asking "So what does this all mean?" It means that Monica is going to get the absolute best care available to make her life more enriched. That is the goal of hospice. She is now talking about accepting visitors.

This is incredibly good news! However good it is, keep in mind that she is still a very sick lady. We will be discussing later today just what she can handle and when. Once again, we ask you all to please, (all together now!), sit tight!

11:00AM - It's been a lazy day for our hero thus far. That's good all things considered. Monica has been sleeping quite soundly. For the first time this week, she was not been nagged by a nurse for vital signs, nor has she been bothered with room service offering her food that she couldn't eat. She is home and she is happy.

It has been about as good as you can get...again, all things considered.

In the past 24 hours, Monica has received several visits from the hospice staff to check on her. This will now be a daily event. As time goes on, the visits will likely increase in frequency. But for now, we are only expecting only one visit from hospice per day.

Monica is still full of pepper when she's up and around. She is able to take care of herself in terms of personal care. Yet her "up time" is definitely short. She will be up for about five minutes, then she will return to bed suffering from simple exhaustion.

It is now that I must discuss with you all what we wish from each of you.

First, please know that I have personally read every email that you have sent me. I have responded to a fair portion. Please note that while I have not responded to them all, each has been well recieved. I will get back to you when the time allows.

Second, Michelle is being pounded for requests for dinner and visits. I will cover each to clarify things for you.

Dinners: Please know that Monica is eating very little. If I can coax her into a few bites of watermellon or a few mandarin oranges, I have succeeded. The issue is that her body is no longer able to process anything heavier than fruit. I have that firmly under control.

The issue then remains what to do for us. The Cooper boys, like most of their peers are very picky. In the past, I have told folks to limit all dinners to the American staples of grilled chicken (no BBQ), glazed ham, turkey breast, and hamburgers. That menu pretty much stands today. My guys will also eat tator tots, mashed potato, sweet candied yams, slightly salted green beans, and fresh raw broccoli. As for desserts, anything goes as long as it's toll house cookies, simple brownies, and cake. Keep the recipes simple. We're simple guys. We don't go much for froo-froo foods.

Now, we do have our favorite fast foods. Jamie is big on soft tacos from Taco Bell (#8 combo) and Joey is big on Burger King and Papa John's cheese pizza. Both boys will scarf Subway subs any time.

I will get back with you later today about their specific likes and dislikes. If I print it now, I risk the wrath of them for screwing it up. When they come home from school, I'll "get their orders."

Now, the issue is scheduling. If we allow everyone on this list to give us food I will have to open the house up as a soup kitchen. We three boys can only eat so much. Please coordinate with Michelle to schedule meals. We will be allowing folks to do round robin. As with our current line of expectation, please sit tight. The best thing to do to help Michelle is to send her an eM. She can coordinate with me and we can make it happen.

Next is the issue of visiting. This is the hardest thing for me to personally address as Monica's condition has deteriorated so quickly that it has even taken me by surprise. Heck, just a couple of weekends ago, we were all at the beach eating snow crab!

Here's the deal. You all need to understand that allowing all of people who wish to visit her now is simply not going to work. First, she is extremely emotional when she is up. I know that you are too, but you have to think of Monica right now. When she sees close friends, she gets extremely emotional and she weeps. We all do when that happens. The problem is that crying, as with coughing, sneezing and even going the bathroom causes her extreme acute pain. The disease in her liver is putting so much pressure on her upper body that even the slightest strain causes discomfort. That is not what we want.

As such, I am going to be limiting her visitors heavily. Priority will be going to family. Secondary visits will be granted to close family friends and clergy. I know that this is very hard for you to read, but Monica is heavily drugged right now and her condition requires a lot of rest. We want Monica to be comfortable.

Please also acknowledge that if you are asked to visit, please do your best not to upset her in any way. Talk about good things. Don't ask how she is. Tell her she looks happy to be home. Stay positive. Remind her of good times that you had together. Tell her that her kids are doing well and look happy that their mom is home. Stuff like that. I know that it will be extremely hard to keep your emotions in check, but you have to do your best.

It pains me to write this, but it is what must be done. Michelle and I will be orchestrating visits. Please understand all that I have written. I wish to God that it wasn't so, but it is.

Last is cards and flowers. Please hold off on flowers. They are beautiful, but juding from what Monica once instructed me to do "Get rid of those things. This place looks like a morgue." Flowers aren't a good idea. In the near furture I will be setting up a foundation for the kids for college. If you wish to spend your hard earned dollars on something of better value, consider that option. As for cards, we are happy to accept any and all cards except those that say "Get Well Soon." Again, think positive. Find cards that lift the spirit. She will never get well. She will feel happy knowing that she is loved and has friends who think warmly of her.

I never thought that I would have to write these instructions, but with the volume of people who wish to help us out in any way they can, this is the best that I can offer at this time.

Thank you all for everything thus far. Our journey is not yet complete. If you're the praying type, per the suggestion of one of our dear neighbors, start your prayer with a gratitude. Thank God for something. Then ask God for personal guidance. Finally ask God to love Monica. That really is the best medicine for her at this point.

Tuesday June 12

It's been a rather bittersweet day for our hero (hence the sucky day/good day icons), but she is finally home. With an extra hit of Dilaudid for the road, Monica was strapped onto a stretcher and brought back home via ambulance. I wanted them to run the lights and sirens, but no such luck. Monica gave me that stare when I made my request to the ambulance crew. It was the first time I saw her smile all morning.

After a refreshing shower and a short meeting with our "tuck-in" nurse, she is now resting comfortably upstairs in her sassy new hospital bed with our Lab/Newfy mix at her feet. He has missed his mommy as much as we have.

It was an emotional morning as even though Monica knew she was headed home, she also knew what that ride home meant. I broke her from her tears to remind her that home is where she needed to be - not some damned hospital.

I have to tell you that Monica is glad to be home. Not only did she walk up our stairs to her room, but within minutes she was telling me what to do! Move this over here...move that over there. Here's me: "How about another zap of pain meds, dear! - OI!" Honestly, it was refreshing to see a little vinegar from my girl.

Folks, I want to thank you all for your continued emails. I do have to let you know that my email box has jumped from 350 messages in my inbox to now well over 750. I am doing my best to keep up, but I am simply overwhelmed by the volume. Don't let that phase you. It's OK. I have yahoo premium. ;)

Many have concluded their heartfelt messages with "Please don't respond." For that jesture I thank you, but it is my pleasure to respond in kind. EACH of you has been a source of relief, solice and comfort. I will try my best to respond ot every one. It may not be today. It may not be tomorrow, but I will respond, I promise.

Rock on fans of Monica. She is comfortable here at home with her boys and she is blessed to have every one of you as a friend.

One last thing, please keep Michelle as your logistics contact for the time being. She is working the food schedule. We continue to ask everyone to continue to sit tight and to keep your prayers working. She is happy now. She is at home.

Monday June 11

Early this afternoon, I signed all of the legal documents necessary to enroll Monica into hospice care. She will be coming home tomorrow afternoon to live out the remainder of her days with us, as she should.

Monica and Joey celebrate her
plans to come home - June 11

It is unfortunately the time for express to you what truly needs to be said: with all due respect, please observe our need for privacy during this final stage of her life. Monica has made it clear to me that she only wishes to see members of our immediate family and close friends of the family. I regret the fact that I must ask this of you, but I know for a fact - as do you, that the number of people who wish to say goodbye to Monica is enormous.

You must aslo understand that we simply will not be able to handle it physically or emotionally. As such, we are also asking that you hold back on calling us. We simply will not be able or willing to respond to your calls. The process of fielding calls is now simply too emotionally draining.

If you wish to contact us, please continue to use the email tags. I read my email every day. I will be accepting all of your thoughts and prayers unconditionally. I will be happy to pass along any messages that you send to me. In know that many of you will feel that this is impersonal, but it is now a matter of logistics and focus.

In lieu of overwhelming us with your calls and the like, I have assigned close family friend Michelle Henry to quarterback all coordination of tasks for our family. As you can all imagine, I will need to focus all of my attention on Monica and her personal needs. If you wish to cook us meals or perform any other task for us, please give Michelle a call to coordinate. You may reach her at (703)447-1637 or at this link: Email Michelle

We love every one of you for your support in the past six and a half years. Without it, Monica would have passed long ago. The energy, the love, the compassion, the joy that you all brought to her, is what kept her in the game for so long.

I will continue to update this page until the hand of Our Lord reaches out to take her home.

Sunday June 10

The number of sucky day indicators says it all. Monica finally met with Dr. W. at 8AM and the decision was made to bring her home. Unfortunately, that is not because she is getting better, it is to begin hospice.

With the grace of God, her pain is under control, although there isn't much else that can be done to attack the cancer in her liver that has indeed gained the upper hand.

Folks, this is the hardest entry I have ever written. As the tears stream down my face all I can think is that you all have been the most incredible group of friends and supporters that anyone could ask for.

Monica's journey is not complete yet. Over the next few weeks, she will be spending what time she has left in the place where she needs to be. At home with her family.

I will probably add to this entry later today. But for the time being, please continue to pray for us all. We need it now more than ever.

As for all of your emails, you will rest comfortably knowing that yesterday I took the time to read to her well over 20 email messages from you, our readers. She and I sincerely appreciate all of them. Keep them coming. They do help!

Saturday June 9

Our hero got a visit this morning from yet another one of Monica's stand-in oncs. Before you all freak out, it just so happens that this one is married to Dr W. I am comforted that even though Monica isn't his patient, he is a little more knowledgeable about Monica's case than the other doctors who worked Monica's case this week.

The primary purpose of his visit was to see how the pain management was going. He was satisfied with what he saw and made no changes to her protocol. He also wanted to make sure that Monica was as comfortable as she could be.

Once all of Monica's medical issues were addressed, he spoke to us briefly about what would probably happen in the next few days. First, he assured us that Dr. W. would come tomorrow morning at 8AM to speak with us about where things stand. Second, even though Monica's pain seems to be under control, her release could not be expedited to Sunday as the company that provides the portable pain management systems is closed on the weekend. Third, a Monday release is looking very realistic.

To be honest, I'm good with all of this. I have a feeling that tomorrow is going to be a very difficult day for us all. We all know what is going to be said tomorrow. We will just have to be willing to hear it, process it, and act on it. We probably won't like it, but it is what must be done.

On a good note, Monica slammed down an orange frappuccino from Starbucks for breakfast. I'm glad that her docs aren't worried too much about her diet. We've opted out several times for more nutritious meals. Monica has developed quite a fondness for Wendy's vanilla Frosties, french fries and chili. Hey whatever works!

Friday June 8

It’s certainly trite to say that this past week has been the most challenging week of Monica’s ongoing battle. Monday saw our hero being admitted for internal bleeding. Tuesday saw her getting an endoscopic procedure to find the source of the internal bleeding. Wednesday saw her getting an MRI to evaluate the source of increasing pressure and pain in her upper abdomen. Thursday saw her finally receiving some pain relief via intravenous pain medication (Dilaudid). Lastly today, we received the bitter confirmation from her oncologist that her liver disease is gaining the upper hand and is the primary source of her current discomfort.

The last sentence of the previous paragraph totally glossed over the hoops that I had to jump through this morning to get that final bit of information. As Monica’s onc is based out of Fairfax Hospital, I took it upon myself to drive to her office to meet with her face-to-face. I wanted information now and I wasn't going to wait. Also, I prefer face-to-face meetings over a phone call any day.

Reassuringly, Dr W. was glad that I made the drive. She took time away from her day to brief me on what she knew. Sadly, what has been the sore point of this week’s adventure is the absence of the one doctor who has been intimately involved with Monica’s treatment since day one. [Devil’s advocate] I cannot blame Dr. W. for being out of the picture. Timing is everything in life. She has a professional obligation to the remainder of her practice to stay current with the latest developments in the field. Going to major oncology seminars is part of her job. In my opinion, Monica hasn’t truly suffered from her absence. Dr. W. has a great staff of supporting doctors. What has been sorely missing all week, however, is the speedy exchange of information between the person most knowledgeable about Monica’s plight and the caregiving doctors at Reston Hospital.

I met with Dr. W. for about 10 minutes. In that time, we talked about where Monica is now and what we should be looking to do for her in the coming days and weeks. Since I popped in to her office unannounced, she was not prepared to show me the MRI nor the official written report. I was OK with that. She assured me that she would be coming to visit Monica tomorrow morning to review the events of this past week and to discuss where we need to go next. As I have done with all of the other doctors this week, I made it clear to her that I was to be contacted before she says anything to our hero.

This is how we live now. One day at a time.

Pink Ribbon Sidebar. Last night I appended this month’s "Where Monica Is Right Now" section with a blurb describing my plans for making a map of the US on which I would place a pink ribbon on the town where anyone who has sent us email lives (how’s that for an ugly sentence? – be merciful oh grammatical critics of the world). I was ignorant to the fact that this web site now has readership overseas. Looks like I have to change my plans a bit. I'm on my way to Discovery Store to buy a globe! Welcome Cologne, Germany!

Everyone else, please go to Monica's BLOG for more instructions on how you can help me start this crazy project!

Thursday June 7

At about 10 o’clock this morning, Monica’s stand-in oncologist (her primary oncologist is still in Chicago) stopped by to discuss the results of the yesterday’s MRI. Thankfully, I just so happened to be in the room when he arrived.

The bottom line is that there appears to be definite progression of the disease on her liver. We kind of knew that already given all of the signs. What we didn’t know already was that there were no major blockages of key arteries or liver ducts. If there was anything in the report to be happy about, it was that. Clogged ducts require immediate and intrusive action.

The proof was in the pictures. The source of Monica’s pain is definitely a product of the advance of the disease. The issue now is what to address first.

Per yesterday’s entry, our first course of action is going to be getting Monica’s pain under control. Currently the pain is so severe that something simple as a sneeze or a cough triggers a severe episode of acute pain. According to Monica, it hits 8 on the infamous pain scale of 1 to 10. Our stand-in onc prescribed a course of intravenous pain medication that will provide Monica with a constant dose of pain killer. The key word here is constant. The problem with oral pain killers is that the pain killing effect peaks then drops off as the drugs get metabolized in the system. An intravenous drip will give her more effective pain management.

This isn’t exactly the greatest news, but it does give us hope that Monica will be released from the hospital in the next few days. They have portable booster packs that allow her to manage her pain as she feels the need. Most importantly, it gives her the chance to get out of the hospital and into her own home…where she wants to be.

Our second area of concern is the progression of the cancer. Once Monica’s pain is under control, we will discuss the next option of chemotherapy.

Monica and I did manage to cause a little trouble today. After we finished meeting with her onc, Monica decided that she wanted to go down stairs to the gift shop to grab some sort of snack. I put her into a waiting wheelchair and off we headed to the elevators.

After pacifying Monica’s need for sugar and caffeine, we decided to take a walk out side. It was an absolutely gorgeous morning. I pushed her wheelchair outside and we made our way around the building to a group of tables that sit outside of the surgical unit. Monica and I sat a chatted for a good 45 minutes. During that time, I pulled out my Palm IPA and dialed into my email box and read about 15 messages to her that I have received in the last day or so from friends and family.

When we returned to the room, Monica’s nurse popped in to check on her. We told her that we escaped for a few minutes to get some fresh air. Her nurse looked at us sternly and said, "You are not allowed off the floor! You need to get a doctor’s note to do that!" Doh! Monica and I just laughed. "Well, hook us up then!"

Wednesday June 6

Today was a very hard day for Monica (for us all frankly). While the good news is that she is no longer bleeding in her upper GI, there are still two major areas of concern; the bloating and pain in her upper abdomen, and the progression of the disease in her liver. The former needs to be addressed ASAP. The latter will determine what we have to do once the pain is under control.

After speaking with Monica’s GI doctor, he convinced me that the bleeding in the upper GI was caused by a combination of Coumadin (blood thinner) and Ibuprofen – which is known to cause upper GI bleeding in people of compromised health. We can put that issue to rest.

At about 2PM, our hero had an MRI to get a better look at what may be causing the severe pain in her abdominal cavity. In what should have been a routine 30-minute MRI, this event turned into the MRI from Hell. While most of you know by now that Monica is extremely claustrophobic, her biggest problem stemmed from what she was asked to do in order for them to get a clear "shot."

For most of us, holding our breath is a simple task. For Monica, holding her breath is simply impossible given the amount of pain in her upper abdomen and given the amount of fluid that is building up in her abdominal cavity. She got around the requirement to hold her breath by tightly grasping a couple of objects with her hands. As anyone who has ever opened a jar of pickles knows, the grasping and twisting of the lid stabilizes the core area (your abs), which is what they ultimately needed her to do to get clear pictures. Our hero did the best that she could. We had a tearful gurney ride back to her room.

By about 4PM, she had relaxed to the point where she could snooze for a spell. Shortly after 5PM, our awesome oncology counselor (Sage Bolte of Life with Cancer) dropped by to see how Monica and I were holding up. We gave her a dump of what our day had been like and she took the time to give us emotional and practical support. I don’t know what we would do without Sage. She, like Monica, is an angel in this terrestrial world.

I left the hospital at about 6PM to restoke the home fires. The boys were both home now and I was needed there to make sure that they were fed, watered and caught up on school work.

Tomorrow we expect a complete report of today’s MRI. I made certain that nothing slips under the carpet. Per Sage’s suggestion, I left all of my phone numbers available to all of Monica’s doctors.

Note to present and future caregivers: make damn sure that you establish a direct line to all of your loved-one’s people. From the experience I had today, you must do it. You cannot be expected to retrieve vital information from a person who has been so heavily sedated that she cannot even remember her own cell phone number.

Tuesday June 5

Monica underwent an endoscopic procedure late in the afternoon to confirm or deny the existence of internal bleeding in her upper GI track. The procedure detected three small lesions at the lowermost part of her esophagus.

While it is good news (in a way), it still does not answer the question of why she experienced the bleeding. The good news is that the lesions are no longer bleeding. The question remains as to why she had this bleeding to begin with.

An MRI has been scheduled for Wednesday to examine her upper abdomen, which is a growing source of bloating and discomfort. Given these indicators, I personally fear liver breakdown. I will let the pros confirm or set that fear to rest.

On a side note, I would like to thank all of you for your latest outpouring of support. We have heard from folks all over the country. The amazing thing is that a good number of these folks we have never personally met. If anyone doubts the power of the internet, your fears are misguided. Personally, this web site has been a Godsend to all affected parties. It has allowed me to bring you all the latest in Monica's journey and it has saved me countless time in repeating the same story to literally hundreds of people. My time with Monica is the greatest gift that I can give her. And this web page has allowed me to maximize that time with her (except for the time that I spend doing these updates!). But all is good.

Again, stay the course folks. We are. The road is rough and the future is unclear. But I am blessed with knowledge that we have a network of friends and neighbors who truly love us. And please tell me what better gift there is that you can give.

Monday June 4

At about 11:30AM I received a call from Monica’s radiation oncologist. At first I thought the call was from Monica. When I heard the voice of Dr. M, I got a bit concerned. My unsettled hunch was well-founded. She told me that she was going to admit Monica to Reston ER for examination. She was quite concerned about how Monica looked and felt. I spoke briefly with her about Monica’s condition and decided that I was more needed at Reston than I was at Homeland Security. As quickly as I hung up the phone, I packed up my gear and headed off to Reston ER.

I got to Reston Hospital after a enduring a frustrating 20-minute 5-mile drive from Fair Lakes. You just can’t get anywhere fast in this damned town. Of course, the source of my frustration really wasn’t the obnoxious drive, it was Monica’s latest stumble.

When I arrived I found Monica resting comfortably in a Reston ER room with friend Vicki M. by her side. Vicki was kind enough to drive Monica to her final radiation appointment today.

Monica looked pale and droopy. The crew at Reston ER ran a battery of tests to see what was going on. More blood tests, an EKG, and a quick routine body examination.

The results of her blood test indicated elevated bilirubin in her bloodstream. Other than that her blood appears to be in a much better state than it was last week. The primary concern became what they believe is slight internal bleeding.

They say timing is everything. Monica’s oncologist is currently attending the annual American Society of Clinical Oncology in Chicago. While this is definitely not what we had wanted, Monica is being taken care of by another fine doctor in her practice.

As of this evening, her acting doctor is more concerned about Monica’s blood issues than of her primary liver cancer. While elevated bilirubin is a sign of advancing liver involvement, all of Monica’s doctors (Onc and GI) seem to agree that there may be some continuing minor internal bleeding somewhere and with Monica’s history of upper gastro-intestinal (GI) issues, they seem to think that she may have ulcers or other lesions in her upper GI track that are causing the continued blood passage. They do not believe that there is massive hemorrhaging as her blood pressure and counts are holding and are acceptable in their eyes.

I left Monica last night at about 8PM to get the boys to bed and for me to catch up on what needed to be done at home. Tomorrow, they are planning to do a GI scope to see where the bleeding may be originating. The fun never stops.

Sunday June 3

Today was pretty much a repeat of yesterday. The only difference was that Monica’s mom came over and bailed me out of laundry duty. I was visibly reduced to tears with that gesture of good will. Honestly, I was extremely thankful as I had to work in two hockey events into the day.

Before anyone freaks at the idea of me bolting off to play and coach hockey games during these tough times, that is my time to clear my head and to recharge my mental state. I’ve told many folks that if I didn’t have hockey, I would have crashed a long time ago. Having Monica’s mom help us out today was very gracious on multiple fronts.

Monica once again spent the better part of the day in bed still trying to recover from Friday’s transfusion. She got a visit from close family friend Michelle H. later in the afternoon.

Like yesterday, the jury is still out on the effectiveness of the transfusion. Our hero is still very weak. She is still very tired. And she is still appearing to be having increased swelling (ascites) of her abdominal cavity. I are concerned that the swelling is a symptom of advancing liver involvement and that it may be compounding Monica’s blood issues, which our fine doctors are starting to think is gastro-intestinal in origin. As previously expressed, we simply don’t know at this juncture.

Our hero is eating well although her meals typically now consist of high protein banana and vanilla smoothies, the occasional PBJ, and peanut butter and Grannie Smith apples. So believe it or not, she is getting the nutrients that she needs to keep herself fed.

Saturday June 2

Knowing all of the events from yesterday, it’s shouldn’t be surprising to anyone that our house didn’t begin stirring until about 10AM. Monica and I were exhausted from the last night’s blood/hospital adventure and Joey was wiped out from his band retreat down at Busch Gardens.

Monica spent most of the day in bed or in close proximity to it. In all honesty, we haven’t seen much improvement from the transfusion. It may be another day or so before we see anything appreciable. From what the nurse said at the hospital, Monica may feel symptoms similar to that of the flu for the next few days. According to them this is normal. The deal is that even though the blood is a type match, it’s still foreign to her body.

Our hero is still dealing with quite a bit of pain. Monica still hasn’t found any noticeable pain relief from her radiation. Obviously, this is very distressing to us both. We were hoping for something by now.

Monica got a visit from close friend Stacy H. this afternoon. Stacy is talented in the art of healing touch and she gave Monica a customized session to help her relax. Thanks Stacy. I know that Monica enjoyed your therapy session.

In terms of keeping the home fires burning, I managed to wrap Joey’s afternoon ice hockey game between loads of laundry.

Now before all you women out there chuckle at the idea of a man doing laundry, I’m not a complete rookie. I somehow made it through college by studying the basics of laundry science. Mind you, I was a little less concerned about separating colors from whites back then. My problem now is the sheer volume. My God, how many shirts can two boys go through in a week??? I now know the answer: 14.50 per boy. Didn’t know that now did you oh, laundry-wise women in the audience.

Thank God we don’t have girls. I am certain that the volume of laundry then easily triple. Then again, I am also certain that they wouldn’t let their dad do their clothes either.

Friday June 1

Monica's blood saga continues. Shortly after her morning radiation appointment, Reston Hospital called her to notify her that they finally had found a match for her blood. She was requested to come to the hospital around 5PM to begin the transfusion procedure.

According to the doctors at Reston, they told Monica that she tested positive (via the Coomb's Test) for a special condition in which antibodies in her bloodstream target healthy red blood cells as foreign objects. This may have been the superficial cause of her anemia, however, the underlying culprit is probably related to the chemo (chemo kills healthy cells in addition to cancer cells), the radiation (radiation destroys bone marrow) or a combination of the two plus other related factors (liver involvement, stress). We're learning the hard way that blood chemistry is very susceptible to any new condition and/or treatment protocol.

The transfusion process took just over six hours to complete. Monica and I slogged home shortly after midnight exhausted from the procedure and from the emotional slap in the face.

I wish to extend special gratitude to neighbor Olga T. (who just so happens to work in the field of blood chemistry) for taking Monica to her radiation and transfusion appointments. I offer her my thanks for really helping me (us) out today. Today was just one of those days for me. In addition to Monica's appoinments, I had to balance my day between work, getting Joey to school at 4:30AM so that he could join his Rachel Carson symphonic band on a trip to Busch Gardens, getting Jamie to his final roller hockey tournament game in Chantilly, picking Joey back up from school at 9:45PM, and just trying to keep all of the wheels turning on this runaway frieght train called life.