The Night The Red "C" Turned "Pink for the Greens"

It's Friday folks! In our house, that means Friday Night Lights, Football Fever, Go Conard Chieftains!! Pulling out everything I have that is red, from shirt, coat, mittens, scarf, blanket, bleacher seat... heck, even the dogs wear red on Fridays!

But last Friday, I was in pink, because Conard went "Pink For The Greens"!

I had received a call from Coach C. (don't you love it?!), the week before stating that he and the team wanted to do something for our family to show their support and to help us out a bit. He wanted to do a fundraiser of some sort. He had talked to Torrie and I agreed. I thought there might be a poster or some pink ribbon stickers for sale; boy was I wrong.

From the moment we pulled up to the stadium, all you could see were pink and green balloons lining the way into the stadium and across the top row of seats. At the gate, you had your choice of a pink or green rally towel to wave. The cheerleaders, all 40+ of them, were in pink. People I knew, and people I didn't know, were decked out in pink. Unbeknownst to me, an email had been circulating through the Conard directory, describing the night and how to participate. Torrie, himself, had gone to school looking so great in his pink button down, khakis, and green tie. And finally, the Team themselves, were all wearing pink wristbands and carrying a green towel in their back pocket.

Amazing, Awesome, humbling.

We were playing Southington...State Champs...hadn't lost a game in 25 games...we were pumped, loud and excited! They were first to snap the ball and we held them to minimal yards. Our ball. Short run, followed by a quick, short pass. Another first down. And then the snap, the quarterback is looking left for Torrie and Torrie is in the endzone, a high pass, a big jump for Torrie amid two defenders, misses the ball, comes down awkwardly, SNAP...Broken Arm. Just like that. Senior season over.

Are you kidding me???!!
This is "Go Pink For the Greens" Night, not take Torrie to the E.R night!!
We haven't even been on the field five minutes!!
Rewind...do over...please!!

I can tell by the way he walks while assisted to the sideline, that he is hurt bad. In fact, the Dr. on the sideline told him it was more than likely broken, but Torrie insisted on staying until the end of the game.For two and 1/2 hours longer, in freezing weather, my hero stood on the sideline in pain, supporting his team. God, I want to be just like him when I grow up. So as I was trying to figure out which hospital to go to (one that we didn't owe money to because of me!), people were flooding us with offers to help juggle cars, take me home, etc. This great community, my community of angels.

So Torrie's onfield season is over, but he is excited to be helping the team on the sidelines. Our special "Go Pink for The Greens" night, just reinforced to us, at one of our families lowest moments, just how much Torrie is loved by his team, and how much we are loved by our friends and community. We are so blessed.

So we will dig out our red today and gear up for another Friday Night Lights. Tessa came home for the weekend so even she will be going to the game! Three of us in the stands, cheering for Conard, and loving our tough guy on the sidelines.

I still have so much to learn from him.

Peace,
Kim

Lessons Revealed at 3:30 a.m.

I think one of the hardest things about getting well, is admitting that you are not.

I came home in a pink cloud. I was heady over the miraculous accomplishments I had made in just a few days to go from NG tube, TPN nutrition and IV's, to protein shakes made at home. Friends and family welcomed me and even more enormous hurdles were overcome so quickly. Bit by bit, I started reclaiming my position as mom, wife, friend and confidant. An encouraging round of followup appointments fueled my desire to get out of the house and step back into life. So I did. I wanted to be as 'normal' as possible again.

I am paying the price. I was flat on my back in the hospital hooked to more tubes that I could count just 25 (!!) days ago. This weekend I was walking the aisles of Costco like I didn't have a care in the world.
Key word: Like

Impeccable honesty.
I had discovered in the hospital, that one of my character defects is often trying to be something that I am not, to fit in, be loved, not to be noticed, whatever the reason may be. I said "yes" because I was afraid to say "no". I said 'I'm sorry' if someone did something to ME. I often had strong ideas or opinions but didn't share them, lest be nonconforming or 'pushy'. I wanted to live a truly authentic life. An open book; so that I could overcome my writer's block and write my book. How easy it is to fall back into old habits and patterns... In the past few weeks, I've said yes to many things that I should have said no to, out of those same reasons I just listed. I don't want to hurt feelings, etc, etc. In my home, with my family, outside my home, it doesn't matter, I have such a difficult time with this.

You know you shower up, style your hair, slap on some makeup and for most outward purposes, you look "fine". Even better than 'fine', is 'great' or 'beautiful' or the best 'you don't look like you've even been sick". Tell that to the nightmares and flashbacks that I have of being in the hospital that has me writing this at 4:00 a.m. In our society, how you look completely overshadows how you feel. And of course, this is human nature. It is painful to see someone we love suffering or not feeling their best. Our words are to encourage and support. My family and friends want to see me looking better each day, doing more each day, putting this behind me.  I, so want to, also. But it's only been 25 days... I have my lifetime ahead of me.

The absolute hardest time of recovery is when you begin to feel better, but there is still so far to go. The wound is still so big from the MRSA. honestly, I don't know how it's ever going to close up, but I am assured that it will. And now there is a new normal, that I seem to be having some childlike temper tantrum about accepting. My emotions are all over the place. I am so happy to be home, but then feel like I am coming out of my skin because I am confined. I feel capable of doing something, but "oh no, you can't do that...ever!" So grateful, then beating myself up because I feel ungrateful. I am told it will take time, you have to adjust to your new normal, just relax... I want to smack them. I want to go dead head my plants, I want to put the fitted sheet on the bed, I want to move the plant from the living room to the dining room, I want to vacuum, I want to hold both of my dogs at the same time, I want , I want , I want...wah, wah, wah...

And then I read this, this morning, when I could not sleep due to restlessness at 3:30 a.m.:  "The Lord gives and the Lord takes away. Blessed be the name of the Lord." Remember that all good things - your possessions, your family, your friends, your health and abilities, your time - are gifts from Me. Instead of feeling entitled to all of the blessings, respond to them with gratitude. Be prepared to let go of anything I take from you, but never let go of My hand!

Well that shut me up real quick! Jeez...

God has given me the ability to breathe on my own, be upright and walking and in the process of making a full recovery to my new self. I must shed the past and embrace the day God has given to me. The restlessness I feel is mainly because I do not feel as if I am doing for someone else. I am the receiver of untold generosity and I feel as if my scale is tipping too far; I want to give back. And God says, "soon".

So I will continue to write and plan for November when I will begin leading mindfulness Meditation again. I will also slow down. I am still very sick. I pushed way too hard this weekend and I am feeling it. At one point, I thought we needed to check in with the docs; not too smart on my behalf.

I do have to come to grips with the fact that I cannot lift, push, pull, shove, kick, scoot (believe me, I've thought of them all) anything over 5 pounds. Ever. Really. Staircases are a challenge, as are hills. In the not so distant future, we will probably have to move; too much house for me alone while Ken travels and the kids are away.

But not today.

Today, I will get Torrie off to school and then get showered. That will then require a rest. Catch up on things at my desk and some phone calls. Lunch then nap. Outside with dogs, rest. That is sort of how it goes... But look how fortunate I am to be able to do all of those things in just 25 days!

If I could get out of my own head and out of my own way, I could really be amazing. That is my prayer for today:

Thy will, not mine, be done.

Peace.
Kim

I Live Among Angels

There is a quote that I love but have difficulty remembering the exact wording... but it so resonates deeply in my soul right now:

           "Friends are angles who lift our feet when our wings are unable to fly...".

I don't know who wrote it, or remember even the first place I read it, but it has become a statement of truth for me as of late.  

With the assistance of social media, it seems that almost everyone I have known my entire life, and people that I have yet to meet, know that I have been really sick for a very long time. The title of my blog kind of gives it away! I have been fighting cancer for the past 17 years. During that time, I have had over 30 cancer-related operations, including open heart surgery. I have had blood clots, transfusions and hundreds (really) of Xrays, Ct scans, MRI's, bone scans PET scans. I have been in the hospital for over a years' worth of time. I have been unable to walk, had to use a walker and/or cane, and was strapped to portable oxygen for several months. Cancer has prevented me from having a career of my own. And most of all, cancer is VERY expensive. Every three weeks, for the rest of my life, I will have a treatment of some type. Currently, each time I walk in for my treatment, our insurance company is billed five figures. Anyone who does the simple math can imagine the financial stress this has placed on our family.

This past month long, unplanned hospitalization, finally brought me and my husband to our knees. As if on cue, my angel friends flew in and surrounded us. I had one very brief, heartfelt conversation with a friend and literally hours later my families' miracle started to happen.

In the  metastatic cancer community, there is a phenomena known as Survivor's Guilt. There sometimes comes a point in the survivor's life where we actually start to put a financial value to our lives. The summer before Tessa went off to college, this happened to me. Fighting this battle, of course, Ken and I have depleted our savings. Lord, our insurance premium alone is more than most household's mortgages, car payments and utilities...combined! But somehow, with God's grace, we have someway remained afloat. It was such a dark time for me that it was hard to justify in my mind, that enormous burden on Ken, as college expenses were coming up. His answer was to just work harder, and harder, and harder. 

"Would they be better off without me?", 'Would it be easier for everybody if I just passed?","Had the kids become old enough that they didn't need me anymore?", "Should I keep up this endless day in and out pink battle?"...

At my darkest time is when I also was informed of what all of this chemo was doing to my body. I was being poisoned to fight the cancer, but now I was living long enough to fall victim to the long term side effects. My body was beginning to show the havoc that long term chemo reaps.  With the support and love of my family, I was able to get through that very dark time, and I made a decision:

FIGHT.

The promise of this surgery in August, was to build a new core abdomen for the one that was falling apart inside of me. Seven large hernias are present due to fascia that was breaking down. Move muscle from here to there, physical therapy, etc. Only my insides were much worse than expected, the surgery was not a success. And then, HA-MRSA. Hospital acquired MRSA. And the fight of my life...

Back to my angel friends. Everyday meals were delivered. Mass cards, funny cards, serious cards, arrived daily to cheer and support me. Flowers and pink pumpkins, and mums left silently and anonymously outside our door. And at our bleakest hour, our family became the recipients of the most incredible generosity; donations were made to us to help carry us through the next few months. My angel friends set up a GoFundMe page and within days, I saw a mortgage payment paid, Hospital bed rental paid, an insurance premium kept in effect. Ken and I breathed... 

My angel friends are from my school days, my single days and our married days. Friends and clients of Ken's, friends of Tessa and Torrie and friends who wish to remain anonymous. 

Angels.

I live among angels.

This outpouring of love has brought a bright light to my family. We are filling our love tanks from you so that we may go back out and fill others' tanks. We have learned that true friendship knows no boundaries of time or distance. So many people have come into our light. It's funny, I am now dreaming so much about people from my years; I've always believed our angels speak to us in our dreams!

There is no conceivable way for Ken and I to express how deep our gratitude is or how profoundly moved and blessed we feel. 

But we will spend the remainder of our lives trying to do just that.

God Bless each and every one of you.

I love you.

Kim

Ken.

Today is the first time in the two weeks that I have been home from the hospital, that I am up before my husband, Ken. To me, it is a sure sign of healing, that I am waking on my own after a good nights' rest. I have always been an early bird; I love getting up before everyone (including Brutus and Bella), greeting the day and doing my morning prayers. It has been a routine that I have kept for years. Since I have been home though, Ken has been the early bird.

Actually, Ken has been the early bird for the past couple of months. He is up with Torrie, packing their lunches, and sending Torrie off with a fist bump that carries the meaning 'I love you, I'll miss you, Have a great day, See you tonight' all without saying anything. They are both men of few words first thing in the morning, unlike me!

Bella and Brutus are next. They sleep burrowed in covers in a crate next to our bed. They patiently doze until it is their time to get up. Ken opens the door and they

race to the top of the steps. We don't allow the dogs to go up and down the stairs because of risk of injury to their backs. Normally, I would just scoop them up and head down the stairs. Ken has a much different method and I almost ruptured another hernia laughing watching him one morning. He sits on the top of the staircase and calls the pups. Each dog runs to either side of him under his arm, and he scoops them up like little footballs! They go outside and then he prepares their breakfast. Once they are settled and watching chipmunks through the glass door, he takes care of our two cats; feeding, cleaning litter, etc. We have quite the farm!

I have done these jobs everyday for the past 20 years, other than when I have been in the hospital. Ken has willingly and without comment stepped right into the job. And he has allowed me to sleep...and heal.

As many couples do, after twenty years of marriage, raising kids, activities, pets, traveling, illness, etc., Ken and I had fallen into a pattern, or rut as I would rather call it. Limited conversation about things that needed to be taken care of, mindless small talk "how was your trip" 'It was good" "Great", blah blah blah. Sometimes hardly noticing each other as we passed through our days and nights. A couple of times, I caught myself thinking, "What happens when Torrie leaves next year? What will we talk about ?" Often my prayers centered around those fears while I laid in bed at night alone while Ken traveled.

Be careful what you pray for...it just might happen.

When I went in for surgery on August 5, Ken was at my side. As he should be of course, but there were many surgeries in the past, that I faced alone because Ken was with our young children. It was always at my insistence, "be with the kids, I can handle this". But our kids are so much older now, that allowed Ken to be with me. I awoke to his face. He had gotten my room prepared with my lamp and diffuser filled with essential oils. He took a hospitality suite and spent the night. He left reluctantly in the evenings and was there most mornings by 9:30 a.m. even with an hour commute.

He did this for nine days. Finally, I came home after the initial surgery. I now had a visiting nurse and he could breathe a little. Not for long though, within 48 hours I was back in the hospital beginning my horrible fight with HA-MRSA. For the next two months, Ken was at my side every single day, except for the one day that he visited Tessa at Villanova. Countless hours in the car, parking garage fees to break the bank, on top of everything he was doing at home (he has not missed one of Torrie's games, plus helping with college Common App, school searches, etc.), and unfortunately, missing work and big opportunities to be on the road.

He chose me. Again. How amazing is that?

At a time, when we were often living a life of glorified roommates, the GIFT of being hospitalized and seeing the true love and devotion this man has for me, was worth every moment of being sick.
The talks that we had, the hopes that we shared, the love that was palpable to nurses and doctors, all reignited the flame inside us that never went out. I saw in Ken traits of strength, selflessness, drive, motivation and hope that I had not seen before. We rediscovered each other, in room 236 at Yale.

And so my amazing husband sleeps in on this gorgeous Sunday morning. I am doing what I love, writing and having coffee in the quiet. Today brings some chores around the house that I would normally do alone, but today we will do together.

How wonderful...thank you, God.

Peace.
Kim

Home.

I have been home from Yale Hospital for one week. Ahhh....

I have been wanting to write this past week about the wonderful feelings of being home, but honestly, I was afraid that I would somehow jinx myself or awaken from this wonderful dream to find myself back in the nightmare of being in the hospital. I finally feel well enough and strong enough to believe that will not happen (I"ll pray not again anyway, just to be on the safe side). I truly think I have a touch of PTSD or something similar because I have not really allowed myself to go back and think about my experience in much detail. In fact, it took me until yesterday, just to book my return visits to all of my doctors because I just can't bear the thought of making the drive and walking back into that hospital. It was truly a hellish experience interspersed with incredible moments of being the recipient of true miracles. There were times of complete darkness and times of overwhelming love and light. Over the next days and posts, I hope to share my experience so that some sense of all of this can come to me. But right now... I am home!

Two weeks ago, this morning my doctors were at the foot of my bed informing me that because my condition had not changed over the past several days, surgery would need to be performed on Monday or Tuesday. That day marked the 22nd day with an NG tube and no food or drink. The prior CT scans had shown a large bowel obstruction of inflamed intestine, infection and scar tissue. The plan had been to let my body heal itself, by completely shutting down the bowel activities. After three weeks, and no bowel sounds or activity, it was time for medical intervention. They had waited this long because my body was so fragile after the two earlier surgeries and the enormous wound that had been caused by the MRSA (the size of my whole hand, plus about 1" deep, completely open wound). I had terrible counts to ward off infection even though I had been on IV antibiotics for almost 7 weeks. I would be walking in, unprotected, to an infection battlefield. It would also tack on at least another three weeks of being hospitalized, attached to the TPN feedings and NG tube. It was so overwhelmingly terrible to even think about, yet plan on doing within 48 hours.

Plus, I was alone. My constant companion, Ken, was at Villanova for Parent's Weekend with Tessa. Torrie was at home for football practice and to take care of my furbabies. I missed my children desperately and was heartbroken that I was missing the opportunity to see Tessa, to hear her sing, and to just hold onto to her. I felt so dark and empty inside. I wasn't able to meditate to relax, nothing seemed to calm my insides. Even God felt very far away from me...

To make matters worse, a huge mistake involving my pain medication was about to happen. At that point, I was receiving pain medication every two hours. By the two hour mark, the pain was so high, that it that it never became controlled. The nurses put in for a pump that I could administer by own dose and not get too far behind the pain. It all seemed well and good except the doses that I was receiving were three times the strength that I was supposed to have had. This was on Sunday afternoon, so by the time Ken got there Sunday night on his return from Villanova, I was already at the beginning stages of being overmedicated. By the time he arrived back on Monday morning, even though I had not pressed the pump at all during the night, I was barely conscious. I remember horrible nightmares caused by the hallucinations of the medication, plus trying to communicate to Ken and not being able to. At one point, I told Ken that I thought I was dying. Somehow (this is one of the miracles) I was able to tell Ken "it's too much medicine". He called the nurses and the mistake was caught. While this was happening to me, plans for surgery were still happening. I was to go down for a final CTscan, to help the doctors navigate when they began the procedure of looking at every piece of intestine and cutting away blockages. They tried to force me to drink the huge amount of contrast; I begged them not to, as I knew it would all be thrown up. From that delirious drug-induced state, I felt like I was in a wide awake nightmare. Ken had to leave in early evening to go home and get ready to stay with me overnight after surgery the next day. It was the darkest moment for me and I prayed to God for His will to be done... I surrendered. The Ct scan finally happened at 9:00 that night, I remember nothing until I was awoken by my Dr. at 5:30 the next morning.

In her words, "I can't believe it." The blockages were gone. Completely. No surgery. Miracle (another).

That was Tuesday morning, the same day as the surgery was planned for. Ken arrived and I shared the incredible news. Later that day, I was allowed to have ice chips to start the bowels up again. By Tuesday night, I was having sips of water in addition to the IV nutrition. Everything stayed down, but still no bowel sounds. Wednesday morning I was given jello and clear liquids, by Wednesday night I was on a soft diet and bowel sounds were now audible. Thursday morning brought the long awaited full diet status and the bowels began to kick into gear. I thought I heard the words "discharge to home care imminent'... And Saturday afternoon, I was home.

Thank you everyone, for my miracles, as a result of your prayers!

God Bless You,

Kim