Our hero enjoying the sun at the
Outer Banks of North Carolina - May 28

Things have once again changed for Monica although not necessarily for the worse. Late last week, our girl had an MRI to identify the source of her most recent breakthrough pain. As suspected, disease was identified in new areas on her middle back (T9). Our radioligist suspects additional disease in her pelvic region. Monica will undergo yet another MRI on Tuesday May 15 in an attempt to confirm that hunch.

Some of you are probably thinking, "Didn't he just say '...although not necessarily for the worse'?" Here's the skinny. Yes, it is not good news that she now has disease in new spots, but the good news is that radiation is a great tool for not only eradicating the disease at those new locations, but the resulting necrosis (death of the cancer cells) will give Monica the pain relief that she has been so desperately needing.

Monica will cease all chemotherapy until her radiation is completed. As of this writing, we don't have any idea how many "shots" of radiation she will need before she is able to recieve chemo again. I will update you all with any news that we get in the next week or two.

Just as she did in April, Monica continues to do her best to go about her daily routine. She is still bothered by chronic fatigue and she is now dealing with a nasty rash under her left arm. We believe that this rash is Doxil-induced. Currently no creme or ointment has any effect as the rash is originating from deep within her skin.

Monica has seen and done many great things these past few days. She has seen Joey become confirmed. She came and participated in the Avon 2-day Walk in a very special way. And finally, with the generosity of one of Monica's church ladies, we have started on a very special video project for our two sons, Joey and Jamie.

So much for good intentions. Reston Hospital called late in the morning to let Monica know that they were unable to find a safe match for the transfusion. They would need another day to find a match. Apparently the blood that our hero has flowing through her veins contains a rather uncommon enzyme combination. They are going to contact the American Red Cross for a match.

Folks, if you ever need a good reason to donate blood, this is one fine example. Just because you’re type O+ doesn’t necessarily mean that your blood will be a safe match for everyone else. It’s just not that easy. Changing the perspective the other way, if you are ever on the receiving end of a transfusion, I am willing to bet that you will be happy that someone else took the time to donate a pint for you.

In what will be my shameless public service announcement for the day - think about giving blood. It really is the gift of life. While your type may not be a match for Monica, it just may be for someone else. OK, off my soap box.

Our hero took the fast track home after radiation to go back to bed.

Tonight, I’m off alone to see Joey get pinned for National Junior Honor Society. This is a special moment for him and a proud moment for Monica and I. He has worked so hard this year and under so much pressure from issues within the family. This is a huge accomplishment and it speaks volumes for Joey’s determination. Like I’ve said before, Joey has a fantastic role model in his mom. Unfortunately, his hero is not going to be able to attend tonight’s ceremony. She simply doesn’t have the energy. Joey knows that. And he’s cool with it.

Wednesday May 30

Monica went to her regular radiation appointment at about 10:30AM. Once again, she had blood taken to follow-up on her counts from yesterday. As expected her counts have not improved, in fact they have worsened.

At about two in the afternoon, Monica called me to let me know that she had just met with her oncologist to come up with a plan to get her back in a better place. The first line of attack was going to be a quick trip to Reston Hospital to get a bag of saline to help boost her blood pressure and hydration. There is now talk about her getting two units of blood to boost her platelet count. There is some concern that she has some sort of internal bleeding going on. Monica was obviously quite upset with that possibility. In a rare expression of emotional release she said "Dale, I’m scared."

Folks, internal bleeding is never good. Our oncologist hopes that if Monica’s blood "thickens" after her transfusion that this will help her to regain her "legal" clotting levels. Blood can seep in a variety of ways. We’re hoping that having thicker blood will help whatever is bleeding to clot. Right now, it’s all a guessing game. We just don’t know much else.

After spending two hours at Reston Hospital giving more blood (they needed to accurately “type” her blood for matching), Monica went home physically exhausted and emotionally drained.

Monica and I spent some quality time together tonight as she settled in under the covers. I whipped her up a kick-ass PBJ sandwich and we talked briefly about what was in store for tomorrow. She told me that Reston would call her first thing in the morning to get her in for her transfusion. I told her to relax and to try to get some rest.

I spent the rest of the evening making sure that the kids’ homework was complete and that everyone else was fed. I “cooked” carry-out Chinese food for me and the boys.

After everyone else had retired for the evening and the house sat quiet, I sat alone and wondered just where this will all lead. Here’s a news flash: I’m scared too.

Tuesday May 39

As predicted in yesterday’s entry, Monica is now paying a heavy price for our journey down to the beach. Some people will undoubtedly say, "Ah, you knew that she was hurting already..." Well, yes, and no. Yes, I knew that she was going to pay some sort of physical price for spending a total of fourteen to sixteen hours (over the course of the weekend) in a car with a very sore lower back, but we (Monica and I) can never honestly predict the extent of the damage until the dust settles from whatever event she participated in. It’s how this disease operates.

Here is what we have all come to expect from Monica. She will willingly endure tremendous pain and personal discomfort to keep herself in the game. Yep, she’s stubborn. But that is how she wants to live her life. She knows that she is master of her own body and only she can set and abide by the limits that she sets for herself. Unfortunately, she occasionally ends up putting herself into harm's way out of love for us and due to the nature of the unpredictable progression of her bastard disease. It hurts her not only physically, but mentally. It’s humiliating for her to keep lowering the bar for herself.

Monica biggest concern is that she doesn’t want to become a burden on us. She doesn’t want to be the anchor in our lives. She wants to participate as much as she can in our lives, and if it means that she has to endure additional pain afterwards, it is what she is willing to do for us. Remember my recent entry about Pickett’s Charge? It’s how she wants to live her life. She fights on facing miserable odds just for us.

Here is where Monica is today. She has had to up her pain killers to counter searing pain in her lower back (where she is being radiated) and in her hips where she is unfortunately not being treated, and she is suffering extreme fatigue from her ongoing treatment(s).

Monica had blood taken at her morning radiation appointment to check her counts. The results of the draw threw up some red flags. While her white blood cells were in the safe zone, she was found to be low on platelets (which assist in normal blood clotting). She was immediately instructed to stop taking her Coumadin, a blood thinner which is commonly used to prevent clots that could lead to strokes. She was also given an injection of vitamin K, which is used to boost the clotting agents in her blood.

It’s obvious to say that today was not a good day. Monica will return to the oncologist tomorrow after radiation for follow-up blood analysis.

Monday May 28 - Joey's Birthday

Joey turned 14 today. God, where does time go?

Joey was the first to rise today and when he got himself dressed he came to our room, opened the door and asked her if he could say good-bye to the ocean. Monica knew what that meant. It was time for her to get up and walk with him to the water to make one last memory of what was a fantastic birthday weekend.

The love of a mom for her son

Like a true surfer though, once Joey saw the surf he just had to ride one more wave. With an approving nod from dad, Joey ran back to the house to put on his wet suit and grab his boogie board. How can you turn down a real surfer on his birthday?

Joey heads out one last time

We gave him an hour to get his fix. The road home awaited and I wanted to make sure that once again, I could make the trip back as painless as possible for Monica.

We arrived back in Oak Hill at about 7PM after another seven hour haul. Not bad for a holiday weekend. We will have to find a way to make that trip shorter in the future. I have that gut feeling that Monica is going to pay the price in some way, shape or form.

Sunday May 27

Beach Day #2 started off much later than day 1. Everyone slept in! It’s not too hard to understand why. Day 1 was such a crazy day that everyone suffered good dose of beach fun fatigue. Go figure!

Like day 1, we all made it down to the water to once again enjoy what the Lord has given us. Like yesterday, the waves were gentle, the fishing was good (if you don't mind catching rays), and Monica was there to enjoy all of the goings on.

Monica with Joey, Jamie and Tyler (l-to-r)

These are the kind of days that make us all wish that beach vacations would never end. With the boys busy boogie boarding and skimming, and Monica absorbing it all from the comfort of her beach chair, there really is nothing more to ask from above.

We finished off day 2 with a trip to our favorite seafood restaurant (Mulligan’s in Nags Head), where we all took great interest in watching Tyler eat snow crab for the very first time. I know that Monica enjoyed watching that adventure. She relishes watching one of her adopted kids make new memories of their own. Tyler may not know it now, but some day he will think of a very special lady who introduced him to snow crab and he will smile.

Saturday May 26

Beach Day #1 started at about 8:30AM. Everyone in the house was up except for me. Monica took the opportunity to run up to Corolla Surf Shop with the boys to secure wet suites for ill-prepared Jamie and Tyler. Since Joey already had his wet suit, he went along for the ride and for a quick breakfast goodie.

At about 10AM, Monica arrived back at the house exhausted just from getting the boys ready for the water. I had a feeling that she might overdo it today, but she took her time getting ready for the beach and made certain that she didn’t press herself too much. She’s good at pacing herself...most of the time.

Memorial Day weekend is typically known as the kick-off to summer vacation season, yet most of visitors to the Outer Banks this weekend are beach home owners who are there to prepare their property for the rental season. As such, we get to meet a lot of our fellow home owners. This trip we had the privilege to meet the owners of one of our old favorite homes. They were kind enough to let us park our car in their driveway while we were down on the water. It made Monica very happy as the walk from our home to the beach, while not overly tasking for a young, healthy body is a long uphill haul, especially when you’re schlepping beach chairs and beach toys. The trip from their driveway to the beach is no more than 100 yards. For our hero, that is huge difference.

Monica spent the afternoon as trip photographer. In what has become a tradition of its own, our hero records for all time the highlights of the trip.

Late in the afternoon, the entire crew gave up the waves for a dip in the hot tub and pool. While the boys splashed the afternoon away, Monica retired for a long nap. At about 7PM, we all headed out for a bite to eat. We closed out the day with a beach pizza from Tomato Patch, a visit to the fudge shop and a go-cart race for the boys.

Friday May 25

The weekend closest to May 28 is usually the weekend in which I take Joey down the Outer Banks of North Carolina for a little father/son getaway. May 28th is Joey’s birthday and he (and yes, I) can think of no better way for him to celebrate his birthday than to boogie board and skim board his special day away. Joey loves to be in the water regardless of the fact that the water temperature at the beach rarely comes above 60F in May. We figured that out a long time ago. Joey dons a wet suit to keep the chill to a minimum.

Joey’s determination is like that of his mom. If there is something that he wants to do, he will figure out a way to make it happen. He may pay the price later, but he’ll suffer a little now to live the life that he wants to lead.

Joey rips a curl

This year I was able to convince Joey to let mom (and Jamie) come down with us. It didn’t take much convincing to be honest. He knows where things stand in life. He agreed unconditionally.

My main concern this day was to get Monica down to the beach house as quickly and as comfortably as possible. She is still experiencing a good deal of pain in her back. We were all hoping that she would begin to get some much anticipated pain relief by this time, but I am now certain that it’s going to take a bit longer. You can’t rush radiation therapy.

We arrived safe and sound in Corolla at about 10PM after just over seven hours on the road. Monica made a bee line to bed as soon as we settled into the house for the night. Since she didn’t get her normal afternoon nap, it didn’t take long before she was down for the count. It took me a bit longer to unwind. Seven hours of fighting traffic does it to me. I made a quick run to the grocery store to pick up food and drinks for the weekend, then I took my customary moon-lit walk on the beach to calm down and mentally unwind from the trip.

Thursday May 24

Monica is doing her best to remain active during the day. While she continues to experience that constant lower back pain and nagging fatigue, she is able to keep both at bay long enough until all of her boys have started their end-of-day routines.

To pass along some good news, our social butterfly has been out and about (that’s "ote and abote" for our Canadian friends) a good bit this week. She’s been seen chatting with our neighbors in the afternoons. She’s been spotted at Kohl’s stimulating the economy. She's been waiting in line at Lowe's with a tray or two of landscaping plants, and she’s been found relaxing in Starbucks with her Chai Latte in one hand and a good book in the other.

Things could be worse. Much worse.

Wednesday May 23

Just as Monica’s travel brochures proclaim, pain relief from radiation treatment does not come immediately. This is especially true when the target tumor(s) sits right next to a large nerve bundle in your lower back. As predicted, our hero is experiencing a noticeable up-tick of pain in her target area. She has been able to get some comfort with Aleve.

Tuesday May 22

It’s safe to say that that first shot of radiation isn’t nearly as effective as modern pharmaceuticals when it comes to quick relief. That’s OK. We have the utmost trust in what our radiologist claims. We expect to see significant pain reduction in the next week or so, if not in the next few days. We know that as fact. We’ve been there before.

With day two under her belt Monica met with Tracy P. for a nice Mediterranean style lunch in Reston. In a short phone call after her bug zapping appointment, she gushed to me about the lunch that she had just consumed. That made me happy as I know how poor her appetite has been of late. Any food these days is good food. It’s nice to hear that she has found something else to eat besides three-grain Cheerios and peanut butter and jelly sandwiches.

As I write, it's closing in on 8PM and she's already made a speedy exit to the comfort of her bed. I hope she's not asleep yet. It's "crab night." The Dealiest Catch is on at 9 tonight. That's our quality time for the day.

Monday May 21

It’s been said that bad things come in threes. If that truly is the case then we’re officially past that in terms of attacking Monica’s disease with radiation. Today, Monica started her fourth series of radiation to kill the cluster of cancer cells in her sacrum.

Her first series of radiation was back in 2001 when she was first treated for her cancer. The intent then was to create a “safe zone” where any post-surgery cancer cells remaining in her upper body would be destroyed.

In the summer of 2003, our hero was diagnosed with metastatic disease after a strange fracture of her left shoulder exposed cancer on her coracoid process (a small bone in her upper chest and shoulder). She received 10 rounds of radiation to halt the disease progression there.

In the fall of 2005, Monica began to complain about excessive pain in her middle back. Once again, bone scans revealed more disease on her spine and ribs. Ten more rounds of radiation and Monica earned her frequent flyer wings from the radiation clinic and the pain relief that was advertised in the office brochures.

Today, we began round four. If bad things truly come in threes, then this bout of radiation should be the start of something good. We won’t know the answer to that question for a few more weeks.

Sunday May 20

Once again, Monica’s disease has reminded her that even the most subtle activity will be rewarded with some sort of repercussion. Our hero spent most of the day in bed with severe pain in her back and hips. Damned this stuff.

It’s insane how just one day of activity can have such a price. And you thought hangovers were bad.

The boys and I spent the better part of the day picking up around the house. Tomorrow the maid comes by to do the deep cleaning. We did our best to make the house semi-presentable. I hate these days. We actually have to clean up for the maid! Where’s the logic there? It doesn’t matter. It’s better us than Monica. She has other things on her plate to worry about.

Saturday May 19

There’s just something really great about Saturdays. Oh yeah. It’s that sleeping in thing that we all wait five hellish days to enjoy! Today, the Cooper boys took Monica’s lead and slept in until noon. Man, we haven’t done that in weeks (frankly, it’s nice just to have our weekend mornings free once in a while!). While I managed to revel in that great accomplishment for a brief moment after waking, Monica looked at me with that famous "yeah, that’s what I do every day" look. How quickly she can burst my bubble.

That’s OK, she couldn’t crush the gleam inside that all we had going on today was some work around the house and a couple of ice hockey games in the early evening. Joey played in his Oakton JV game at 5PM and I had a geezer league playoff game at 7PM. Since we had a little bit of a time conflict, Monica volunteered to take Joey to his game, while I went my separate way to my game at Fairfax. Joey was very happy to have mom in the stands for his game. I know that it gives him a little mental boost.

Everyone returned safe and sound later on in the evening to enjoy what remained of the night together as a family. These are the kind of days that we like: relaxed yet sprinkled with activities that give us a little break from the insanity.

Friday May 18

Our hero took this day to rest from all of the activities of the past few days, but not before getting up to take Joey to Starbucks for his celebratory end-of-school-week Passion Tea. Monica took it upon herself to fill in for me this week while I prepared myself (as a chaperone) for Jamie’s 6th grade class field trip to Gettysburg Battlefield Park.

At about 10:30AM Monica called me on my cell to check in with me to see how my trip was going, but I had to let her go as we were right in the middle of our two-hour bus tour of the battlefield park. I told her that I would call her back when there was a better time to chat. That time didn’t happen until well into the afternoon between a trip to the wax museum and our reenactment of Pickett’s Charge. When I did manage to check in with her she asked me how things were going. I told her that unlike many Virginians that fateful day in history, I would somehow survive unscathed.

Jamie and I returned home from Gettysburg at about 6PM where we found Monica in her favorite place of refuge: her bed. As what has been the norm for the past few weeks, the excitement from the day simply wiped her out.

Sidebar. Gettysburg was the most important battle of the American Civil War as it turned the tide of the war into the Union’s favor. It was also one of the bloodiest battles of the war (the honor for the bloodiest day goes the Battle of Antietam where there were over 23000 casualties in one day). According to historical statistics, nearly 8000 fighting men died on the battlefield over the course of those fateful three days, and well over 42000 were wounded.

I could not help but think about what all of the participants thought as they faced each day of that battle, especially during the climax of the battle: Pickett’s Charge. Certainly many young men under Pickett’s command knew that they would never see their loved ones again moments after the ill-conceived order was given to charge well-defended Union forces over one mile of open ground.

As our group of kids walked the very ground on which that charge was made, I thought about just what would drive men willingly forward into dismal odds of survival. Then the answer came to me that it is the same thing that drives our hero onward. While Monica certainly knows what fate awaits her, it is the love of her family and of her home that allows her to endure tremendous pain and suffering. She does it every single day of her life. And she forges on with the simple hope of living with her loved ones forever in peace.

Thursday May 17

I met Monica in Reston shortly after noon today to deliver her latest collection of MRIs to our radiologist. As we expected, there is new uptake in Monica’s sacrum and left femur which is causing our hero some pretty serious pain. We pretty much knew that there was crap in there already. But, thanks to this incredible bit of modern technology, our radiologist will now be able to zap with pinpoint accuracy the offending cancer.

Monica will undergo a series of treatments in the next couple of weeks that will not only eradicate the disease from her sacrum, but will give her the pain relief that she has been so longing for. There will probably be some initial increase of pain as one of the tumors sits right against a major nerve junction. Our radiologist ensured us that it will get better over time. Damaged tissue tends to swell. Once the tissue finally dies, the area will heal and Monica will finally get the real relief that she has been hoping for.

Wednesday May 16

Today was relatively quiet. In a sense it was sort of the day before the storm. Tomorrow we meet again with Monica’s radiologist to discuss Monica’s latest MRI photo shoot. We fully expect the MRIs to show disease in her hip complex as that is what Monica has been complaining about for the past few weeks. The question is: where and how much? We’ll know soon enough.

Special ‘Hanx! go to our local supporters Susan P. and Beth R. for a delightful turkey dinner tonight. Yum! I do have to tell you that Monica didn’t partake as the sight, smell and/or glimpse of anything meat turns her off. Nothing personal folks. It’s a classic, yet undesirable side effect of liver disease. Fear not ladies, all of the Cooper boys wolfed it down! Oh, yeah… those brownies were out of this world!

Tuesday May 15

Monica spent the early afternoon hours at Fairfax Radiology getting the MRI of her hip complex performed. In what was advertised as a 45-minute adventure, the entire procedure took about 90 minutes. While Monica wasn’t too happy with the duration of the exam, she was emotionally relieved in that she went feet-first into the tube. For a claustrophobic, that’s the difference between being in an open field instead of a cave.

We’ll know the results of the test on Thursday when we once again meet with our radiologist. We should also know by then the plan for her impending radiation schedule.

Monday May 14

Our hero spent today pretty much the same way as she did on Sunday: in bed. Monica did get herself going at about 9:30AM to join Tracy P. for a Belgian waffle at IHOP. But shortly after returning home, Monica found the comfort of her bed too appealing to pass up. She slept on and off until I got home from work.

Such seems to be the norm now. Monica made an interesting statement to me before our normal bed time. While expressing her unhappiness about sleeping so much, she said (I’m paraphrasing here...) "I think that I’m purposely shutting myself down as a way to deal with all of this pain." To be honest, it makes perfect sense to me. Just who would want to deal with pain that she has to deal with day in and day out?

As for Monica’s pain, tomorrow she’s off to Fairfax Radiology to get another MRI taken of her pelvic region. We know she has more disease in her hip complex. That’s not the issue. The purpose of this drill is to provide our radiologist with an exact roadmap of the area of interest so that she can blast the crap out of it. The real objective here is to give Monica some well-needed pain relief.

Sunday May 13 - Mother's Day

The theory behind Mother’s Day is that we, the testosterone-laden members of the family, encourage mom to relax and enjoy her day without issues. Well, as we all know, theories are just that, theories. Things never seem to turn out quite as what you might expect or hope.

Today, Monica took that "relax" part to the extreme. She ended up sleeping for probably 20 hours of the day. Looking back on yesterday’s activities, I am certain that all of the craziness took a physical as well as an emotional toll on her. This is what happens when she tries to push back the fatigue. She might be able to push it back for a while, but it comes back with a vengeance the next day.

Monica did make it up late in the morning to enjoy her steaming hot chai latte and to witness me planting 10 new pink azaleas around the back of the house and a tray each of pink impatiens and yellow marigolds along the front porch and around my koi pond in the back yard.

The afternoon brought more classic Mother’s Day activities (sarcasm intended). Jamie returned to Fredericksburg with one of our roller hockey families to wrap up his tournament play. Joey and I headed off once again to Reston later that afternoon for his second Oakton JV ice hockey game of the weekend. And Monica headed upstairs for yet another Mothers Day nap.

Saturday May 12

Today was day one of a very busy weekend for the Cooper family. I spent the first half of the day in Fredericksburg with Jamie for a roller hockey tournament (his first game was at 6:40AM – yuck!), while Joey and Monica held down the fort in our absence. From what Monica told me later in the day, both she and Joey took the morning to relax and enjoy their time together as mother and son.

Monica will tell you that there is something special about being able to spend quality time with just one kid at a time. Not that being with both boys is a pain. It’s just that having just one to focus your life energy with is something truly enriching.

You all need to know that when dad is out of the picture Joey relishes the idea of pampering is mom. Just the same, Monica cherishes the time that she gets alone with Joey. Oh sure, the same goes for Jamie when Joey is away (sort if), but Joey is very close to his mom where Jamie is more "dad’s" kid. It’s times like these though, that keep our hero alive and happy. She gets a lot of energy from our boys, individually or together.

Jamie and I returned from Fredericksburg shortly after noon. With only an hour break in between the entire Cooper crew headed off to Springfield to attend a special reception held in honor of my parents, who celebrated their 50th year of marriage. The site of the reception was Messiah United Methodist Church in Springfield – the very church in which Monica and I were married just under 20 years ago.

The whole family standing on the alter
where Monica and I exchanged our vows almost 20 years ago.

While Monica shared this special day with my parents with all due love and admiration, deep down she was a bit melancholy. In her mind she knows that she will probably never see that same milestone for us.

Upon our return to Cross Creek, it became Jamie’s turn to spend some quality time with Monica. I hit the road with Joey to coach his ice hockey team (Oakton JV) at Reston. Joey and I returned home at about 10:30PM to find Monica fast asleep exhausted from the day’s activities. It was a long day for my girl...all of us for that matter.

Friday May 11

Many women out there will agree with me that there’s something very therapeutic about shopping. That said, most of you won’t be surprised to know that yes, Monica is a member of that sorority. Today she took advantage of a good day and refreshed our closets and drawers with some new summer attire.

Why the boring details of my wife’s conservative buying habits? I have to tie her shopping trip story to one we heard on Tuesday when Monica and I met with our radiologist to discuss Monica’s latest MRI. While chit-chatting about how some people deal with stressful situations, our radiologist informed us that one of her clients took that simple pleasure a bit too far when she rang up her credit card up over $30,000 in one day! We sat and wondered out loud just what was on that list of sorely needed items. We also chuckled about how that lady’s husband must have reacted when he got that dreaded call from the credit card company... "Uh, Mr. [so-and-so], this is Mr. [so-and-so] from Visa, has your card been stolen?" Doh!

I guess that I can consider myself lucky. My girl would never go that crazy...never mind. ;)

Thursday May 10

It must have been that loving touch of hers, because I seem to have rebounded nicely from last night’s allergy attack. I took the morning off both to get the rest that my body was calling out for and to spend some quality time (if you call it that) with Monica. Both of us rolled out of bed at about 1PM. She sort of mocked me as she reminded me that on many days, that was her normal wake-up time.

I convinced myself that I was well enough to report to work for at least a half day. With all the time I have taken off this week, I couldn’t afford to be out for much longer. That’s the sucky part of being a contractor. You don’t work, you don’t get paid. On the other hand, I'm glad I'm a contractor. No corporate manager in the world would tolerate the amount of time I spent with my wife instead of at work. I am thankful for my clients though. They understand what is going on and they support me 100%.

Monica and I slammed down a quick lunch at the Wendy’s right down the street from my office. After lunch we each went our separate ways. Once again, we managed to pull off another quiet day. Maybe I should get sick more often!

Wednesday May 9

It’s always nice to have a “quiet” day once in a while. Today there were no doctors’ appointments, no treatments, and no other activities related to our hero’s situation. I might have benefited from a trip myself, but more on that later... Monica took the day to take care of pressing things like laundry, food shopping and other stuff around the house.

We closed out the day as a family by joining one of our neighbors for a night out...kind of. We bought take-home dinner and spent a quiet evening chit-chatting about the current events.

By about 9PM we were all home again. It was all for the better as I started to feel worse and worse as the night dragged on. It’s allergy season for me. Damned trees. By 10PM I had a 101F fever and was achy all over. Not to worry though. This works well for Monica as she kicks into nurse Monica mode. She made certain that I was properly loaded with my fever, pain and allergy meds. Then she tucked me into bed...in the guest room of course. That works be design. We don’t need to be in contact with anything that I might have come in contact with. If I, or anyone else in the family has a fever, we make sure that any contact with said person is minimized. Monica’s counts are still low. We cannot take any chances.

Tuesday May 8

We met with Monica's radiologist today to discuss the findings of last week's "MRI from Hell." As expected Monica has new disease in her spine. As expressed previously, that isn't necessarily the worst news. She will get the much needed relief from the pain that has wracked her frame for the past few weeks. It was determined however that additional MRIs will be needed to study her pelvic region. That test will be conducted next week.

As a result of this new development, Monica's oncologist has decided to withold her next chemo originally scheduled for next Tuesday. The primary goal right now is quality of life...it is to resolve the pain as quickly as possible. Once her pain is under control, we will continue with the chemo, but only when the effects of the radiation have waned. This is yet another fine example of how quickly things can change for our hero in a blink of an eye. It's really OK. We're all good with it.

Monica's only concern now is the thought of another bad MRI experience. Her radiologist has ensured us that this new test will only take about 30-45 minutes. She'll be OK. Valium is good food. ;)

Monday May 7

I took the day off today not only to recover from the Avon Walk, but to do something very special for our two boys. With the help of Becky K., one of Monica's Women of Worship friends, Monica and I spent the better part of the day creating a video scrapbook of our life as a family.

The intent of this project is to give our kids (and me) something that will allow us to see Monica and to hear her voice long after the disease takes her from our physical world. To many people this may sound like we're giving up. You all need to understand that we haven't given up. Monica fully intends to continue to battle her disease as long as she possibly can. However, the bitter reality is that sometime in the not too distant future, Monica will no longer be with us. Our desire is to capture her image now while she is fully able. To us, it makes no sense for us to wait. By doing it now, we hope to capture her in the best light in which she should be seen.

The project has been very powerful to us both. We found that recording conversations about how Monica and I met, how her life was changed by the arrival of each boy, and how each of them played such a rewarding part in our family's life will be a powerful reminder of who she was, what she meant to us all and what she wants us all to do when she is no longer in our physical presence. We look at this project as way to keep Monica's memory alive and as a treasure to be held for a lifetime.

Sunday May 6

After pounding the pavement for the final 13 miles - all in the name of breast cancer advocacy - the hardest part of the day still awaited me and my 3100+ new friends: closing ceremonies at 3:30PM.

I spoke with Monica sometime before 3PM to let her know that my trek was nearly complete. The cheery voice at the other end of my phone congratulated me on my success and assured me that my personal hero would be there with me to participate in the Avon Walk's closing ceremony.

Some day, you should all experience this event. If you never elect to do this walk, you must someday participate in this single aspect of the Avon Walk. It is the most emotionally charged part of the weekend.

Monica and Mohawkman (me) at closing ceremonies.
Notice the light eminating from her head. Coincidence???

Closing Ceremonies bring forth a miriad of emotions. Shreaks of joy come from people who are simply happy to have completed the walk in one piece. There are tears shed by people who have suffered painful and dabilitating injuries along the way. And there are thousands of tears shed for the millions of other women and men stricken by this bastard demon disease. The latter of course is the most gut-wrenching. You see too many survivor shirts to ignore that simple fact. There is rarely a dry eye in the house as the ceremony concludes. It's where the thoughts and emotions of the weekend's physical suffering boil over with the sheer magnitude of the event and the sobering mental impact experienced by all of its participants. For many including myself, it's an ever-unsettling thought that regardless of how much we personally suffered on The Walk, people just like Monica have suffered 100 times more over the course of their personal journey.

Saturday May 5

The Avon Foundation’s Walk for Breast Cancer most enduring slogan is "Good things come to those who walk." I accept that as fact as I’ve gained priceless insight to my life with Monica by participating in this incredible event every time I do it. But never before has that slogan echoed in my mind as much as it did today. Much to my surprise, Monica, with the help of The Walk’s most notorious personality Moocow Guy, schemed behind my back to find a way for her to participate in the event the best way that she possibly could. Instead of going home after seeing me off, she teamed up with Moocow Guy to become an honorary member of Moocow Guy’s Moo Crew to cheer all 3100+ participants on.

MooCow Guy and the Moo Crew is made up of one incredible family (plus a few special friends) who attend this and many other breast cancer events with the sole intent of cheering on every single walker who participates. Their contribution to every event goes beyond simply cheering. These folks make every participant a member of a bigger family those of the ever-widening breast cancer community.

Today’s entry is about what our hero did to participate in The Walk even though her health prevented her from being a full-fledged participant. You will see for yourself how Monica continues to mock her disease. Frankly, it's pretty remarkable how she gives her disease the respect it deserves. None.

Monica and I spent a restless night at the lovely Renaissance M Street Hotel. Trust me, it wasn’t from the accommodations. Folks, if you get the chance to stay there, do it. The beds were soft, the staff was cheerful and helpful, and the ambiance was classic upscale Washington. Our lack of sleep originated exclusively from the excitement of the day to come.

We arose at 6AM, slammed down a bunch of donuts and made our way to the Kennedy Center for opening ceremonies. At 7AM, the route was opened and as if we were reliving last year's event, we made our way hand-in-hand along the opening steps of the route. I told Monica that she might as well tag a long if she could for the first mile or so as the route wound it’s way one block away from the hotel.

She just smiled and said, "Of course, I’ll walk with you until I can’t take another step." After about one mile, we stumbled upon MooCow Guy and his band of Moo Crew cronies. It was a homecoming of sorts as Monica and I had only been in touch with him via email for much of the past few months as we all ramped up to the event.

After exchanging happy yet teary hugs with the entire Moo Crew, Monica made the remark to me that her hips were bothering her and that she would have to stop soon. Coincidentally (or so I thought), Monica’s chariot was already in sight. A dear friend of the MooCow Guy brought his classic ’56 pink Cadillac to event as a prop for the event. Monica told me that her ride was here and that she would be heading back to the hotel to find our car and head back home.

I gave her a weepy hug and agreed that it was best for her to call it a day. After spending a tough night in the hotel, I could only imagine the fatigue that she was starting to feel. I gave her one final kiss and told her that I would call her later in the day to give her an update. She smiled and waved as the Cadillac drove away.

After seeing her off, I resumed the walk. Now firmly at the end of the pack of 3100+ walkers, I thought to myself how lonely this walk was going to be. Little did I know of what was ahead.

At about the five mile mark (somewhere along Wisconsin Avenue in Georgetown), I heard a crowd of cheering people. As I got closer I saw MooCow Guy and that pink Cadillac. Upon reaching the cheering site, I nearly broke down after what I saw next. It was Monica sitting in chair with the biggest smile on her face. Finally it came to me. She had schemed with MooCow Guy to stay with him and his family for as long as she was able. At that instant, I though to myself, "Now why does this not surprise me?"

Monica would join me one last time this day. She would meet me at our lunch break at Sibley Hospital. After sharing a sandwich with me, we walked together up the famous "Hill from Hell" to once again meet up with MooCow Guy and his Moo Crew.

It was here that I saw Monica finally fade. MooCow Guy arranged for her to be taken back to our hotel to pick up our car and finally make her way home for a well-deserved rest.

As once again I resumed the walk, the realization of that slogan rang in my mind. "Good things do come to those who walk." Indeed, my fondest memory of Monica this day will be the smile that she gave me when she finally headed home. As the tears streamed down my face, I thought to myself that final glance will become one of the fondest memories of my life with her. It was yet another example of how this incredible woman continues to push herself beyond the limits of her health to make a loving mark in not only my life, but in all those who witnessed it and were the beneficiary of her commitment to us all.

Sidebar: For those of you who are interested, I will be setting up another page off of this one in the next few days summarizing my personal thoughts, experiences and highlights of The Avon Walk. Stay tuned...

Friday May 4

Later this afternoon Monica and I will be heading down to downtown DC to get me checked in to the Avon 2-Day Walk. Tomorrow, I will be hitting the pavement with about 3500 other walkers. Sadly, my life walking partner will be opting out this year due to the advance of her disease. It's going to be kind of a bittersweet evening (and walk for that matter) as this will be the first walk that Monica has missed since she started do breast cancer walks six or seven years ago.

I have made up a really cool t-shirt for the event. I promise you all that you will see it when I get all my pictures in order. Here's a sneak peek.

Well, I'm off to pack up my gear. I have one major task left to do. I have a date with my personal barber. Bzzzzzz... Mohawkman returns!

Please note that I this will be my last entry for a few days. I will try to resume updates on this site on Monday. Sorry for the interruption of the pipeline, but I have a higher calling. I'm sure that you all understand.

Thursday May 3

What I am about to tell you all is yet another example of how this damned disease turns your entire perspective of life upside down. Here's the scoop. Monica's MRI showed active growth in her hips and spine. That is what we both expected going into the test.

Now here is where things get crazy. We're actually happy about it. Why? Because it's treatable. Monica's #1 complaint of late has been her severe and debilitating breakthrough pain. While the confirmation of the progression of the disease in her bones is far from joyful news, we now know that the pain that has gripped her for the past few weeks will likely be reduced with radiation to the affected areas. That's the second benefit of radiation second to high-energy targeted cancer cell eradication. Once the cancer cells are destroyed, the pain is reduced significantly.

Folks, it's all a matter of relativity when it comes to fighting cancer. One of the slogans that I plan writing on one of my walk t-shirts is "Some folks on chemo would trade anything for your bad hair day." Think about it.

Monica's positive for cancer in her bones is yet another example of how bad news isn't so bad once you look at it from our perspective. Again, it sucks majorly that the stuff has advanced, but this saves Monica the possibility of being so doped up on pain killers that she can't function as she wants. You see, this is the meaning of effective palliative care. Our doctors' job is to provide our girl with the highest degree of comfort even though their ultimate prognosis is still not favorable.

Bring on the sun tan lotion. It's time to fry those damned demon cells.

Side bar... please note that we are asking for all visitors to this site to sign our guestbook. We want to see just who is out there. Simply click Monica's BLOG in the left panel and follow the directions. We know that we have accumulated a good following. Leave a note! We want to hear from you!

Wednesday May 2

Utter the words "You need an MRI" to a certified chlostrophobic and you are guaranteed to make his/her day a living nightmare. Forget the fact that the mission of the test is to check for progress of metastatic breast cancer. For Monica, the very thought of being stuck inside of that damned tube for over two hours...(yes, two hours) and then being instructed not to move a muscle while the shots were being taken is sheer terror.

Well, that is exactly what Monica had to endure today. Thanks to the loving touch of our neighbor Tracy P. who stroked Monica's leg for the entire test and for the soothing effects of valium, she made it through the exam. She was a little stiff from the adventure, but no worse for wear. I can say that from here. I know that she would have said something different.

Clinically speaking, the intent of this MRI was to see if there was any new activity. This most recent head-to-toe image set will let us know where things stand and if any of her cancer can be treated with radiation. Unfortunately, we won't know the results of the MRI for the next few days.

Monica slept for much of the rest of the day. She did make it up at about 8:30PM for some of my fine home cooking (OK I lied...Chinese food). I expect her to sleep well once the sun goes down.

On a side note, the Avon 2-Day walk is fast approaching. Just to let you know, my updates will be delayed a few days over the weekend as I wander the streets of suburban DC and MD. I will do my best to brief you all on the results of the walk when I return. I may dedicate a separate page to document this great event.

Also, thank you all for all of the positive feedback about this site. It's a pleasure for me to do this for you all. It's not only informative to you, but it's also a little therapy for me. Thanks for all of your kind words of support to both of us. We do listen to your thoughts, prayers and best wishes.

Tuesday May 1

Monica spent the late morning at her onc's getting her blood checked. She gets tested weekly to monitor her counts. Everything seems to be in what we call legal limits. Her red and white blood cells are low but in the range of "acceptable." Neupogen really does work. I'm glad. At over $200 per shot, they had better!.

Tomorrow, she will be getting an MRI to check the source of the pain in her hips. If there is disease, it will probably be a candidate for radiation. That is one of two ways to reduce pain. The first of course is with pain killers...which haven't been doing much good of late. She was also promised a call from the Pain Clinic. Yeah. How long has it been since this topic first came up?!?! Don't get me started.