Giving Thanks

I feel incredibly blessed today to celebrate Thanksgiving with my family. Chaotic as things are when we travel, there is always a level of excitement that comes along with this many O’Neil’s in one destination. My sister Vicky is hosting, and everything she touches becomes the most beautiful Pinterest board you could find. My mother, with her wisdom, heart, and hands full of grandchildren. My sister Lindsey’s sweet growing belly carrying Cate’s best friend! It’s a GIRL!!!!!

With life all around me, I am able to thank God for opening my eyes this year. I once read an ancient proverb stating, “happiness is not having what you want, it’s wanting what you have.” Seems simple. Cancer has allowed me to actively live this proverb. I am thankful for what I have today. Waking up with my sweet husband, arms wrapped all around me. Hearing all the giggles as Carr says yucky Daddy as he gives me a morning kiss! Catherine babbling as if she is having a full conversation. This is my life, it is so full of love. Simple, honest, love.

This year I have prayed the hardest for God to change Carl’s condition. It seems as though our prayers will be answered. Fear occasionally creeping in as I watch Carl sleep. Wondering in fear what a holiday would be without him. What would it be like to have had a reveal party for my sister, and not have had him to share all the excitement of the next big thing. I can’t go there too much, because the pain becomes too intense. I pray that God let’s us grow old together.
Despite the fear that comes and goes,
I am so grateful that cancer has embedded in my heart and soul that tomorrow is not guaranteed, and that today is a blessing. I am so thankful for today, for sweet Carl and for my family! Gratitude for what we have today, though it may not be easy, perfect, or even what we planned, we are giving thanks for a life together! Happy Thanksgiving to all of you! Cheers to health and life!!!!

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Scan Results

The results are in, and nothing but good news! It appears the fluid collection is the only thing that is visible on the scan!!!! It is likely that scar tissue within the surgical field is the cause of the abdominal pains. God is good. Thank you for all the prayers, we are so blessed to have all of you on our side!!!! This will truly be the happiest Thanksgiving of our lives!! We are blessed for the continued good news of what appears to be a cancer free husband!!!!

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The Re-scan.

I just wanted to write to all our prayer warriors out there and give you an update. Sunday morning Carl was having severe acute belly pains that worried me to the point of calling his doctor. She wanted us to go to the emergency room, but my tough little cookie was determined to wait it out. Understandably so, ER co-pays generally being large sums of money, and likely result in the scheduling of further testing likely done at a later date. So, come Monday, when the belly pains had been on and off through out the night his doctor ordered a new scan to see if there have been any changes. Carl has what appears to be a fluid collection near his pancreas, that is a common result of such a large surgery. It has not changed in size on the previous two scans. This among a few visual markers on CT have lead the doctors to be very sure that it is just a benign fluid collection. These collections can sometimes cause pain. Worse case they may require surgical draining.

I cannot tell you how or why these tests unravel your nerves the way they do, but they surely do for me. Carl is calm as a cucumber. He shared with me his thoughts while laying completely still on the scan table yesterday. It was such a lovely and yet painful thought, that I must share. Carl said he that while he was laying there praying to Mary ( as he always does, sweet catholic boy that he is), a thought entered his mind about all the thousands of people that had previously laid on that very same table. He thought about those people being alone and all their prayers being whispered to save their lives. Much like his very same prayer that day. It was powerful to think about all those prayers being lifted to God!

Hope and prayer have become two very powerful words to our family this past year. The prayers of hundred flooded in on social media, via phone, and in person yesterday. We are as always so humbled by the love of our prayer warriors. Perfect strangers praying for us all morning at the beach!!!! Receiving loving cards from friends old and new praying for our fight! It is amazing to know that all these people care about your life!!! I often think of those close to me that have committed suicide, who were hopeless, and alone. If they could have only seen the outpouring of love that really existed for them in the world, could that have saved them. It is hard to say.
Hope, prayer, and love. Those are things that keep the soul alive. As we wait, I pray for all of you! Your love and prayers have taught us both how good the world really is!!! Thank you!!! As I watched from afar another cancer wife lose her partner this weekend, I realized that life on this earth is not permanent for any of us. That wife in particular, loved everyday like it was her last! It was a lesson I will take from her journey and carry in my heart, as we fight on! No matter what the outcome of the test today and those to come in the future, love, prayers, and hope will always be in our hearts. Keep y’all posted. I have not waited by the phone this much since I first met Carl 😊🙏!

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Fear and Love

Well…I know it has been a while since I have checked in on the blog.

We are moving through chemotherapy, with every-other week being quite a challenge. Recently Carl had a clean scan, revealing that there appears to be no cancer in his body. He did have a spot on his pancreas, but it appears to be a fluid collection that has remained in the last two scans and its unchanged size is somewhat encouraging that it is benign (non-cancerous). We will do more diagnostics after chemotherapy is finished to be certain that it is nothing more.

Carl will have his 5th chemo treatment today. With each treatment the side effects seem to increase. He is unable to drink, eat, or touch cold objects. It is more physical this round than it was for the first. He is nauseated, tired, and weak the after his chemotherapy treatment. The recent victory of removing his feeding tube was a huge milestone for him. Now we have to focus on balancing the weight-loss battle daily. It is strange…I never thought I would be telling my chef-husband to eat more!!!!!

This is hard to admit, but it has been a struggle for me to write down my feelings.  At this point I feel a silent victory appears to have been won. However, when we received the news of the clean scan, neither Carl nor I, felt the rush of relief that I assumed would accompany such news. Maybe the fear of the reality of his cancer, will keep us constantly on high-alert and unable to totally relax from a diagnostic stand-point. As if we are forever waiting for the other shoe to drop. It is odd to find that at this point in the process, I feel the most afraid, the most alone, the most emotional and the most exhausted. My strength, as the care-taker, seems to be weakening. The role of the wife in the battle to beat cancer is one where you storm through…fighting so hard to keep high moral in the home, to maintain whatever semblance of normalcy you can, that you often bulldoze right over the fear that lies in the deepest chambers of your heart.

That fear surfaced for me in a very real way last week, as I stumbled upon another young mother and wife fighting a very similar battle. Her husband was cancer-free for 9 months. They too have a baby,  an incredible loving support system. Just like us. With cancer, it is dangerous to compare yourself to another, because no two cases are the same. This wife and husband team, have not been as lucky in their fight. He is, as we speak losing his battle with his wearisome fight.I pray for comfort for her and her daughter. When I read through her blog (cocktailsandchemo.com), it unravelled me to the core. I could not get enough of her poetic words, and at times felt as though I was reading my own thoughts. It was as if she was I, and to hear their victory and then see the loss that they are now facing…it pushed me into a mental space that all wives of cancer bury deep inside and try to avoid. Her words surfaced my ultimate fear…maybe every family faced with cancer’s ultimate fear…

That after all this fight, you lose.

Since the beginning I have buried that fear. It would surface every time things would get really scary, but I then I would bury it deep down once again. I thought that I had dealt with the thought of raising my children alone, but after reading her story, it hit me like a Mac-Truck that I surely had not. Alone…a word I now feel daily as my partner battles his own demons. And then, after reading her story, it occurred to me just what alone meant, as simple and very self-explanatory as it is, and the permanency of it all washed over me like the ocean waves, took me down emotionally.

These are the things I forgot to think about, these are the things I know I would ache for, God forbid, I ever am truly alone. My fears are now more real as I watch another’s loss. And our victory has left a bittersweet taste in my heart.

I have almost found away to live in the lonely world of co-habitation that happens through the long haul of chemotherapy. Weeks go by where Carl is in out of sleep. Then he wakes and is so present, it is as if he does not have cancer at all. It is a bipolar world of symptoms and a roller-coaster of emotions…anger vs fear vs sadness vs love. My closest friends remind me that I cannot think worst-case scenario, and to a certain degree they are correct. However… What if fear becomes so real, that I am actually forced to live my life as though I am not guaranteed tomorrow? What if my fear of losing my best friend, makes me a better mother, a better wife, a kinder  person…the kind of person God intended me to be? What if fear makes me live my life with more purpose?

Then maybe living in fear is exactly where I need to be.

I pray to God every night that I can live in that heightened state, so that I fear now and have no regrets later should this story take an unexpected turn. That blog, as much as it hurt me to read, as much sorrow I feel for this woman and her baby, it opened my eyes to the reality of cancer. Their story may not be our story, but we don’t know what lies in store for us. And God, I pray that our’s is one of victory. It is hard to imagine, what her week has been like. How does a husband say goodbye to his wife and baby… Do you lay together and talk until your voice is hoarse? Or do you lay there silently letting all of the unsaid words be swallowed up by the pain?

These are the thoughts that are running through my head and however unhealthy they are, they force me to think about fear and its ability to push me towards living each day to the fullest. Please pray for this family, and pray for mine, and all the other families out there fighting this fight. It is never really over, fear and love never really leave your heart. My vow is to cherish each moment with my husband, because I am blessed to have the opportunity to do so, while so many others have lost this battle.

We are fearfully and lovingly moving forward, always together in our fight.

Keeping my word.

Hello my sweet friends. We are in a tough spot, that is about all I can say about this phase of cancer. After such a big surgery, Carl is having a very rough respose to his new chemotherapy regimen. He is weak, exhausted, and nauseated all day. His beautiful head of hair has begun thinning, and energy is at an all time low. Today we went in to have chemotherapy, and were advised to break because Carl is Neutropenic. It is almost comical when you are at risk for infection with two toddlers……enough said. I must say that it is hard to imagine doing this for eleven more treatments, but the alternative is also just as scary.

I have realized with-in my heart, after some hard praying for patience, that I am working through those vows I spoke on the alter. To LOVE (not just be) in sickness, and in health, in good times, and in bad, for better or for worse….TILL DEATH DO US PART. It is interesting to think of that sweet little story I played out in my head….boy meets girl, white dress, babies, houses, careers, and growing old were all in those dreams, never once did cancer enter that story. This is real, this is hard, this is true love. It is not always fair, it is not always pretty, it is not always easy, or self benefitting. It is love, and with it came my promise to give that love, in all times, not just the good ones. I have have been doing a lot of soul searching about how active my love is in the good versus the bad days. How much added stress do I bring to my day to cloud my judgement, and make me less of a loving wife and mother. I have also been searching for the things that truely matter, and erasing the things that don’t. I am not sure if anyone is good at cancer, but I have to say, I am liking the person I am today so much better. I feel more like my authentic self than I have in years. Being true to myself allows me to be able to give more love. It is a time when I am listening to my heart, and living with my soul in all avenues of my life. The fear is gone, because the scariest thing that I could have imagined, is now unfolding in front of me. My heart, my soulmate, is sick and this has become very real for me and my children.

It is my vow, my promise, my heart that is in charge of this family right now. My actions on a day to day basis are what determines our future emotional-well-being in this house, and that means setting the daily pace for positivity and love. Truth, I am not always feeling positive. Another truth, it is scary to be alone all the time. The last truth, I now know that I can be alone. God forbid if that happens, as freeing as that truth is, that life would leave my real heart dead. So with all this truth on paper (virtual paper), it is now a second vow……I am to love, and keep on loving through all this sickness and bad…..so that we can celebrate all the good that started our sweet little family. Truth be told, I have done many things wrong in my life, but marrying Carl, being his wife, and having our beautiful children are the choices that I would do over, and over, and over again. That is real love. You stick together, even when worldly circumstances try with every ounce of energy to break you. We cannot be broken, in fact we are holding on tighter then ever. I thank God everyday that I gave my vow to Carl, and cancer can never take that away, nor will I let it break my promises!!!

Alix

Living for my Family.

I am sitting in an all too familiar seat atop the Tom and Gayle Benson Cancer Center at Oscher Hospital on a Friday morning with tubes running from my chest to a machine.

Today, I am not here for chemotherapy, but for simple fluids just to stay on top of potential dehydration throughout my long road to recovery.

One month ago, I underwent a surgery that changed me mentally and physically forever. And it has been one heck of a roller coaster ride since they finally got me “put down” on July 10th. When the 12 hour surgery concluded, Dr. John Bolton said it went beautifully with clear margins achieved. Overall 41 lymph nodes were removed, as well as the tumor that sat in the junction of the stomach and the esophagus. Nearly ¾ of my esophagus was removed as well as about 2/3 of my stomach. The remaining stomach was then brought up to my remaining esophagus for a “new” esophagus, and what was left is less than 1/3 of my original stomach capacity. They sent all the removed items to pathology; and the hope was that no living cancer would be detected within the tumor or the lymph nodes. We were not that lucky, however. 5 out of the 41 lymph nodes still had detectable cancer and about 25% of the tumor showed signs of living cancer well.

While this is not necessarily the best news, it is not the worst either.The affected areas are, in fact, removed. And we did get what the doctors called “clear margins”; meaning all of the cancer in the affected area was removed. Since the cancer that was still living was undetectable by PET scan, we will be doing a precautionary round of chemotherapy (16 weeks of a combination of inpatient and outpatient), which will once again bring me back for regular visits to the fifth floor of this now familiar building. This time, I know what to expect. My cancer treatment team has become like family. We feel comfortable here. We know our way around, and it is good to see familiar faces. It’s almost like a reunion. (And you know we love our reunions in New Orleans!) With this round, we will see if this stubborn Italian head of silver/black hair can withstand another treacherous chemo drug combination! I am thinking some hats are in my future, but you never know.

One thing I know I need to do in preparation is become stronger.

Recovery from surgery has been a whirlwind. This is one of the most intense, stressful, and complicated surgeries that can be performed on a human being. They created a brand new G.I. system for me; so the way I eat, breathe, sleep, walk, cough, sneeze, and even yawn is all different. I have to re-train myself to do all of these once simple, overlooked motions. To help with eating, I have an insurance policy in the form of a feeding tube that I get calories from at night. I am still on minimal pain medication, but the slow process of weaning myself off of narcotics for over a month has led to some nausea and other complications. There are also many emotional struggles that one faces after such a major surgery, that therapists call post traumatic stress syndrome. I experienced a lot in the ICU that I will leave out, some of it pretty graphic; but those experiences will stick with me forever.

I am moving forward though. 20 pounds leaner, I have a gentle exercise routine, and am beginning to eat foods on my own more regularly. There have been days where I have looked at food in disgust, as if it were a foe. It is hard to imagine, but all too real.Through cancer we have not been very fond of the saying “one day at a time,” but this really is the only way to approach recovery. Every day is different. There are days where getting out of bed is not a possibility, leading to depression, appetite suppression, and dehydration. These are the days that will kill you. You have to fight. You have to get up. It is hard, but it must be done. I think of all the support that has come our way in the form of donations, prayers, cards, actions, and I use this for motivation.

Mostly though, I think about Alix.

I think about our two children having a blast in the other room. I think about Carr and Cate. They know their dad is sick, but they will not take that as an excuse to try to climb in bed and smother him with hugs and kisses. They are why I must get up. They are why we are going to do another round of chemo. They are why we are going to be cancer free, and live our life to the fullest.

I am just living one day at a time, and for that, each one will become the best day that I have ever lived!

 

Carl

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The reality of Cancer

The lack of communication on our end is in no way an indication of our lack of wanting to reach out to all of our amazing support system. Life since we left the hospital has honestly been full of the lowest lows, and a few of the highest highs (babies coming home). I have been short with words at this time. To be honest the feelings we are having are so raw at this point. Cancer has become real. The inability for a chef to eat, constant dry heaving, nauseated with every smell under the sun. Life is very difficult. Recovery is slow. We are finding joy in the smallest victories.

Cancer is so scary, how it creeps in unnoticed, and literally changes your entire life. Right now it feels as though the symptoms are winning to Carl, for the first time he feels weak, unsure, and like the cancer is getting the best of him. Food is his life outside of family. It is physically painful for him to eat, and that is more heart breaking than the diagnosis itself. Simple things like yawning, coughing, and hiccups, are extremely painful. We are working each day to set small goals to increase normal activity. Prayers are needed at this time, more than ever. For my children, for myself to keep patient, and for our parents who have been here around the clock helping us since we came home.

A special thanks to Oschner, Dr. John Bolton, Siobhan, and all the nurses on the GI Step Down Unit and ICU. I have never seen such flawless nursing in all my life (that is saying a lot considering I have worked almost every avenue of nursing care). Their pain management, time management, endless attention to details made for an excellent experience. Our surgeon, and his team of surgical residents were at our side night and day, they were tirelessly working!!! Our surgeon was incredible. The cancer was all removed, and our margins are clear. The worry and reason for additional chemotherapy is that there was so much cancer still living and 5/41 nodes removed were positive with cancer, and 1 cm of his tumor had living cancer. We will be doing 16 weeks of chemotherapy that will start in 2.5 weeks or upon healing from surgery. Thank you all for all of the love and support. Carl will hopefully be turning a corner soon and able to starting feeling up for visitors. At this poing he is so nauseated that it is difficult. Thank you all for your prayers and continued support.