Still Hoping...For Him

Last night, I cried so hard that it hurt. Violent spasms emanating from the center of my being sent quaking jolts of grief throughout my entire body. In a futile attempt to stifle my tears and silence my cries, I laid, face-down, on my bed with a pillow over my head. But, before long, the emotional and physical pressure proved far too powerful for me to hold in, and everything spilled out. My tears fell freely and my sobs broke loose with a force that left me shaking and weak and gasping for breath. When it was finally over, I laid, crumbled in a heap on top of my bed, bruised and broken, buried in an avalanche of sorrow and despair. Sick with grief, I cried out to God for help and waited for Him to free me from the fallen debris of my broken heart. Feeling alone, in a valley of sadness, all I could think of was a song I used to sing, based upon Psalm 121... “I lift up my eyes to the mountains; when will help come to me?”  When will help come to Anthony?

These last couple of weeks have been really, really hard. Two weeks ago, Anthony was discharged from the hospital after a four day stay. He was treated for dehydration and acute renal failure. A few days after he came home, I spent a day in the ER being treated for severe exhaustion and dehydration. (Seriously....Since then, I don’t go anywhere without a sports bottle filled with coconut water or Powerade.) 

Because Anthony became so ill and had to be hospitalized, any plans for further treatment had to be put on hold. In the meantime, Anthony did decide that he wants to give the chemo (Gemzar) a try. We actually went to the chemo teaching appointment on Tuesday, but the nurse practitioner sent us directly to the ER because his lab work from the day before indicated that he was very dehydrated again. He had a few liters of IV fluids pumped in and then I brought him home. The doctor thinks too much fluid is being tapped each time he has a paracentesis...This is dehydrating him and causing serious imbalances with his electrolytes. So, from now on, only three liters will be taken off at a time. Unfortunately, this also means that Anthony will have to contend with abdominal distention most of the time. 

So, now what? Well, Anthony has chosen to have Hospice come in and get him set up on their service since chemo, at this time, is not possible. In order for him to start the chemo, his labs will have to improve considerably... particularly his kidney function and his sodium level. In the meantime, Hospice will be able to provide care and services at home that will not only help Anthony, but will also give the kids and me some support. We were told that Anthony can still choose to have chemo in a couple weeks (hopefully, his labs will even out and he’ll feel a little stronger), at which point, Hospice will be put on hold. At least, with this option, he does not have to give up his hope...which, by the way, he refuses to do! And since he still has hope, so do I. Oh, it’s hard...Harder than anything I’ve ever done, but I’m holding on to hope with him. And for him.

But, I still cry. Every single day, at some point, I bury my head in my hands and I sob. Mostly alone. Once in a while, with a friend or with one of my kids...but mostly alone. Never with Anthony. I think that’s why it always hurts so damn much. Anthony has always, always been there for me. He has always held me and stroked my hair or rubbed my back. He has always told me that everything will be OK. And, no matter how big the problem, how confusing the issue, or how sad the feelings, I have always believed him. There’s never been a reason not to...because Anthony has always made everything OK. I know that might sound kind of hokey to you, but it’s true. Anthony used to make everything better than OK. He used to.

Now, I don’t expect Anthony to tell me everything will be OK. He can’t. He is too sick. He is weak and he sleeps a lot. He gets sick to his stomach often and has trouble keeping his food down. Sometimes, he’s confused and he forgets. He needs help walking, even with his walker. I shower him and dress him. I’m pretty good at shaving him, too. I brush his hair and trim his nails. I feed him when he’s too tired to hold his fork or spoon. He’s been spilling his drinks lately...His glass gets too heavy for him to hold...so I put a straw up to his lips so he can sip on fluids throughout the day.  I stay with him, right next to him, in case he needs anything. And, I tell Anthony everything will be OK. I say the words and smile my very best smile as I hold his face the way he used to caress mine. And I think he believes me. I wish I did.

So now, when I cry so hard that it hurts, it just keeps hurting...long after the tears have run dry and my cries are silenced...It just keeps hurting. All the time. I try telling myself everything will be OK...I try to imagine Anthony telling me everything will be OK...but it’s not the same. And it doesn’t work. I don’t feel better. I just feel empty and lonely and sad. Even so, I keep holding on to hope...sometimes, only by a thread, but I keep holding on to any little shred of hope I can find. I do it for me. But mostly, I do it for him.

Anthony Will Always Be Anthony

One day, after teaching a math lesson, one of Anthony’s students went up to his desk, pointed at a problem on the worksheet in her hand, and said, “I don’t get this, Mr. DiRocco.” Anthony said, “Well, maybe you could try looking at it from another angle.” Before he had the chance to say anything further, the little girl immediately looked down at her paper and slowly rotated the sheet about 90 degrees. She cocked her head to the side and quizzically stared at the paper for several moments before glancing back up at Anthony. She was looking at it (literally) from another angle. Aren’t kids great?

Sometimes, we need to look at complicated things from another angle...get a different perspective on the situation. There are times when our vision may be too myopic that we fail to see the entire picture. We may concentrate on one little piece, perhaps even focus all our energy in the wrong place.  Other times, we may look at a particular problem or situation through such a wide lens that we completely overlook a small, but vital, piece of the puzzle. It kind of reminds me of those ‘Find the Hidden Object’ puzzles that I’d steal from my kids’ Highlights magazines. (Those puzzles were the main reason I kept the kids’ subscriptions coming...long after they grew out of reading the publication!) Sometimes, you can find things by taking in a view of the entire picture; other times, you can focus in on one small area and find that hidden piece camouflaged amid similar lines or patterns. It’s not all that different from the conundrums of real life. I wish solving the real life mysteries were as fun as the Highlights’ puzzles.

Since Anthony was diagnosed with pancreatic cancer, I have had to adjust and readjust my way of looking at things from so many different angles that my head has gone spinning. To further complicate things, many of the details, parts of the picture, have changed over the course of his illness. Even one of Anthony’s doctors told me that nothing about his case has been ‘normal’ or ‘usual’ from the very beginning. So, processing all the information we’ve been given and dealing with all the changes and ups and downs, has been challenging much of the time...usually frightening...and almost always exhausting. Only one thing has remained simple, uncomplicated, and consistent from every perspective, every angle, every vantage point. That one thing is Anthony...who he is and how he loves. 

Through all the tumult, in spite of the sadness, regardless of the outcome, this one constant...Anthony...has brought, and will always bring, me comfort and a sense of peace. You see, Anthony being Anthony never changes. His love for me is completely and totally unconditional. And it never wavers. I’ve never, ever...not even once...felt that he didn’t love me. For me, that’s huge...gigantic...pretty unbelievable. What’s even more amazing is that his love for me has made me (finally) feel that I...this broken, imperfect, flawed human being...am special and infinitely loved by God. You see, I can’t help but ponder this: If Anthony...a broken, imperfect, flawed human being...can love me so perfectly, how great must God’s love for me be? Only a person with a pure heart and a deep love for God can lead another to ponder such mystery. That is who Anthony is.

It has become very obvious to me that I am among many whose lives have been touched by Anthony’s love. Since he has fallen ill, hundreds of people have responded to our requests for prayer. Many have forwarded updates to others whose lives have also been touched by Anthony in some way. Childhood friends and former classmates, some of whom Anthony has not seen or heard from in years, have written or called to tell us they are praying. I have never seen anything like this. But, then again, I have never known anyone like Anthony.

I received an email the other day...a poem written by an old friend whom Anthony has not seen in decades. The poem was sent to others as an urgent request for prayers after learning of Anthony’s recent hospitalization for dehydration and acute kidney failure. I wept as I read this poem. I wept, not only over the beauty of the words...I wept because I was overwhelmed by the beauty of the man to whom I am married. I wept because this man I call ‘husband’ has grown over the years, but he hasn’t changed. His deep love for God has always spilled out and touched the lives of those who have been blessed with his friendship.

No matter how complicated things get, no matter how this illness threatens to change our lives, I can be sure of one thing...Anthony will always be Anthony. He will always love unconditionally, with a pure and beautiful heart.

Anthony J. DiRocco, Jr.
He has grown, but he hasn't changed.

Here is the poem I received from Anthony's dear friend, Gil Garcia. Thank you, Gil, for showing us Anthony through your eyes.

An urgent request for prayer for Anthony DiRocco  (February 28th, 2012)

A dear friend, Anthony DiRocco, lies fighting for his life in my beloved San Pedro.  

I ask all who know him, and those who do not, 

to reminisce of a morning you might have spent listening to the surf at sunrise.

 He is that!

  

He was created by God to bring joy to your soul, and freshness to your very existence, 

like the sounds of shore delivering the songs of nature from the creator.

 He is that. 

Much like the morning shoreline mist cleansing your senses

in blissful strolls along the water’s edge.

Similarly, Anthony’s music and songs throughout his life

have allowed one to find joy in the vibrations of his strings

and the beauty of his voice,

a gift he’s given freely throughout his life.

He is the man, the person, the Jongleur of life

who strolled into your troubled existence with music and rhyme;

He is that.

His contributions to one’s everyday life go beyond his music,

for his friendship is treasured by all who chanced to know him.

He is a gift to all life; He is selfless.

He is that and more.

I implore all who have known him, and those who have not,

and to those who have forgotten how to pray,

to pray this day for the healing of this soldier of joy. 

Please, if you have ever loved another human being, male or female,

before you lay your head down tonight

let your higher power hear in a massive common cause

a request from mankind to heal our Jongleur of song.

Please, I beg you because he is all that I say;

He is that and more.

Please hurry to send this on to your friends

and ask them to send it on to theirs from country to country today.

Do not wait!

                                                                                                                ~ GIL GARCIA

Check out Gil's artwork at 

Gil Garcia's Art Gallery

We Walk By Faith and Not By Sight

February 23, 1988. Twenty four years ago, today, my youngest child was born...a son. Twenty four years ago, I was holding him in my arms...Every inch of my healthy, beautiful baby boy, wrapped up snug in one neat little bundle, fit perfectly in my arms. Amazing how something that small and vulnerable could be so full of energy and life.

Tonight, after helping Anthony into bed, I crawled under the covers so I could hold him in my arms. He’s too big to swaddle or wrap into a compact little bundle, but I did the best I could to make him feel safe and loved and cared for as I held him close to me. I nearly drove myself into despair as I pondered how my husband, a grown man, could feel smaller and more fragile than a newborn in my arms.

I don’t know what to think or how to feel tonight. Even though we were told the tumor shrunk to a size that’s too small to see on an MRI, I can’t deny what I see with my own two, imperfect eyes, right in front of me, as big as the day. I see my husband shrinking, his clothes hanging loosely on a bony frame that, up until now, had always been so strong and robust. His once long stride has been reduced to tiny steps that he takes slowly and with great caution, leaving him feeling tired and weak. When I see Anthony like this, it’s very hard for me to stay strong and positive for him...or for me.

********************************************************************************************************

I wrote the above late Thursday night. Perhaps I had a premonition about Anthony’s doctor appointment yesterday (Friday) afternoon. Or, maybe past experiences have taught me to trust my instincts, face my fears, and to stand tall against adversity. I don’t know how I knew something was wrong, but I knew. Still, I was completely unprepared for what we heard yesterday afternoon, and it absolutely knocked the wind right out of me. I’m still trying to catch my breath.

One of the things I’m struggling with most is telling all of you what happened. I don’t want you to become disillusioned or lose faith or hope. This is really hard and really painful, but we have to remember, above everything, that God has a plan. We are called to “walk by faith and not by sight.” I keep saying that over and over to myself as a reminder that God sees everything and He can answer all the ‘whys’ we may have...We may not get the answers in our time, but someday, we’ll understand. So, for now, I ask you to join me as I put one foot in front of the other and continue to walk in faith.

Yesterday afternoon, Anthony’s oncologist told us cancer cells were found in the fluid taken in his last paracenthesis. This means the cancer has spread to the abdominal wall.  Anthony has three options: 1) He can start on the standard chemotherapy treatment for pancreatic cancer with a drug called Gemzar; 2) He can sign up for a protocol out of UCLA that uses the standard treatment (Gemzar) in combination with a new drug being tested. With these trial studies, there is always the possibility of getting a placebo instead of the real medication. The good thing about this trial is that he won’t be compromising his treatment because he will still be receiving the Gemzar in a standardized treatment regimen. If he starts treatment, he can always stop it, at any time, if it makes him too sack; 3) He can opt to abandon any further treatment and sign up for Hospice care at home. 

All of this was completely unexpected and really hit hard. Anthony and I need the time to talk, cry, and just “be” for a while, until we come to a decision together. I’ve told him I want him to choose what he feels is right for  him...even if that means he chooses to stop all treatment and go on Hospice. I can live with that. I absolutely can not live with him suffering on my account.

Please pray for us...and with us. And, please, don’t let this tear away at your faith. Yesterday, I was so upset and angry because, just three weeks ago, we received miraculous news of healing; yesterday, all that changed. But, life is like that, isn’t it? Things happen all the time, and it only takes a moment to change a lifetime. We have to make the best of it. So, Anthony and I will continue to walk by faith and not by sight. We ask you to do the same. God bless all of you.

Yes, Miracles Do Happen

It seems that, when doctors have bad news, they usually give you whatever good news they have, first...At least that's what Anthony and I have experienced throughout the course of his illness with pancreatic cancer. So, when the office visit with his oncologist began with good news, I immediately braced myself.

Here’s what happened:

A short time after checking in at the front desk, Anthony was called back and put into a patient room. We waited (and waited and waited) almost an hour before finally seeing the doctor. This was actually the first time, at this office, we’d ever had to wait more than 10 or 15 minutes to see the doctor. Of course, my already primed imagination was running at full speed by the time we entered the building, so after an hour plus of waiting in that tiny exam room, my thoughts were in orbit. I had managed to convince myself that the doctor was saving us for last because the news was bad. I figured she could spit it out right before escaping through her office back door and diving right into her weekend. 

When the doctor stepped into the exam room, she promptly sat down with Anthony’s medical chart spread across her lap. She removed a large clip from a stack of test results and began rearranging the order of the pages. Uh-oh...Here we go. I tried to read the expression on her face and all I could think was that she’d make one hell of a poker player. When she finished rearranging and reordering, she looked up and made eye contact. Anthony and I sat there with our hearts in our hands, but she was holding all the cards. 

First, the doctor commented upon the unusual fact that Anthony has had a paracenthesis (a procedure to remove excess fluid [ascites] from his abdominal cavity) every week for the last 12+ weeks and that, not once, have any malignant cells been found in the fluid. When pancreatic cancer patients have ascites, it is usually caused by the cancer spreading to the abdominal wall, in which case, malignant cells are present in the fluid. This does not appear to be the case with Anthony because every single time his fluid is sent to the lab, the report comes back negative for cancer cells. We also learned that ascites, if not caused by the cancer, can be a symptom of serious liver disease. Once again, the doctor was a bit perplexed because nothing in Anthony’s blood work or imaging studies suggest liver disease. Those results were normal as well. 

I made a conscious effort to breathe deeply as I watched the doctor flip through the next set of pages. My stomach felt like it was doing a few flips of its own.

Next on the agenda was the matter of Anthony’s dizziness and loss of balance that resulted in him falling a couple times. I’ve known several people who have had cancer that eventually spread to the brain. We were about to hear the results of Anthony’s MRI of his brain to rule out this horrifying possibility. I grabbed the seat of my chair and held on as I watched the doctor intently. It seemed like everything was moving in slow motion as her lips formed the crucial word: Nooooooor-------maaaaaaaal. Wait. Did she say normal? She must have said normal because Anthony was smiling and she was smiling and now they were talking really, really fast and I couldn’t understand one word until ribbons of “ha-ha-ha-ha-ha-ha-ha-ha-ha-ha” filled the room and eventually bumped into the sides of my head and made their way into my ears. Aaah...laughter! Did Anthony just tell Yogi Berra’s story about the doctors x-raying Yogi’s head and finding nothing? That’s Anthony for you...In times of stress, bust out the Yogi-isms.

I took a few more deep breaths. OK, so far, so good. Two more items on the agenda: The tumor marker level and what the tumor looks like on the MRI. These were both biggies and she saved them for last. I didn’t know what to think, so I told myself to empty my brain of all thoughts. Ha! That’s very funny. The day my brain shuts off on command is the day pigs fly. I decided to try focusing, really hard... 

She went for the tumor marker first. Just in case some of you have not had experience with this, tumor markers are substances that are found in the body (via blood sample) when cancer is present. There are different tumor markers for different kinds of cancer. So, if the level for a particular marker is high, it can be an indication that a specific cancer is present. When a patient receives treatment, the test is repeated at various intervals, and the results are used to help determine whether or not the treatment is working. 

Anthony’s CA19-9 (the tumor marker for pancreatic cancer) was over 250 in early November of 2011. (The normal range for a healthy person is 0-37.) At that time, he was beginning his first round of treatments, consisting of six weeks of concurrent chemo and radiation every day, five days a week. He finished this grueling treatment regimen on December 22, 2011. I had never seen anyone so sick. He said he had no idea a person could feel that sick. I don’t know how many times I wondered if he would even live through it. Too many nights, I laid awake, next to him in bed, just listening to him sleep...going over and over in my mind what to do if he stopped breathing.  As we sat across from the doctor, waiting to hear the new number, I didn’t realize I had stopped breathing. I don’t know if the momentary dizziness I experienced was from a lack of oxygen or from the excitement of hearing  a few select words...“dropped”...“way”... “down”...then, finally...“120!” Did I hear that correctly? I actually said that out loud...“Did I hear you correctly?” A voice (sounding like it came straight from Heaven, complete with a chorus of angelic “aaaaaahs” in the background) said, “Yes. His level is 120. It dropped way down, by more than half.” I’m surprised the doctor didn’t ask me if I needed my hearing checked....I don’t know how many times I’d asked her to repeat herself during this visit.

Now I was breathing fast. Probably too fast. I couldn’t feel my feet on the floor, and that made me think about my mom and dad. I remembered what great dancers they were...It was like their feet never touched the floor. They were two people, moving as one, gliding across the dance floor with so much grace and beauty that you’d believe anything was possible. That’s when I knew. That’s precisely when I knew that Anthony’s oncologist was saving the best for last. 

As the doctor flipped through those pages one last time, to the very end, I  turned to face Anthony as she spoke. I wanted to see the look on his face when she told us what the tumor looked like on the MRI. I was waiting for a size comparison, dimensions, changes from the first scan...the one that showed an inoperable tumor in the pancreas and in the blood vessels going up into the liver. I was sure she was going to tell us the tumor was smaller...measurably smaller. I just knew it...But, apparently, I was wrong. 

No, the news we received was not what I expected at all. The doctor did not give us any size comparisons or measurable changes in the tumor. She didn’t do that because the tumor could not be measured. Actually, the tumor could not even be seen on the MRI. There was nothing visible to measure. 

In answer to your, “WHAT?” .... Yes, you heard (well, read) correctly. The doctors do not see the tumor on the MRI. It shrunk so much that it’s too small to see. 

To say this is miraculous is an understatement! Anthony’s response to the treatment was far better than anyone expected. Before he started treatment, the prognosis was “grim, very grim” (the exact words used by his doctors). We’ve been given a gift of time...How much time, no one knows. For us, we are grateful to have this time together, time to pray even harder, time to see and experience this miracle continue to unfold. 

So, what’s the plan now? Well, the doctors are still very concerned about the ascites. Each week, Anthony has anywhere from 6 to 8 liters of fluid removed from his abdominal cavity. That’s a lot of fluid all at once. His blood pressure always drops significantly, and it takes a while for it to stabilize, so he gets exhausted and very weak. So, his doctor wants him to have a paracenthesis twice a week, starting this Monday. He’ll go every Monday and Thursday now, and hopefully, it won’t be so taxing on him. Still, the cause of all this fluid remains a mystery, so Anthony is scheduled to see a liver specialist next week to make sure nothing is being overlooked.  If the cause of the ascites can be found and treated, there may be a chance Anthony can have surgery to remove the rest of the cancer. 

Anthony remains steadfast in his faith and truly believes he will experience a total healing. I have never met anyone like him and his faith inspires me and helps me stay strong. I am so proud to be his wife, to walk beside him in faith, in hope, and in love. We continue to take one step at a time, confident that God will strengthen us for the journey that lies ahead...no matter how arduous or challenging that journey may be.

Please stay with us and continue to pray for a complete and miraculous healing for Anthony. He still has a long way to go before he can be pronounced cancer free; but, he and I believe, with all our hearts, that day is on the horizon. Miracles do happen! In that spirit, we ask that you continue to visualize Anthony healthy and whole as you pray for his miraculous healing. 

We thank you...we thank God for you...and we send our love to every single one of you. May God’s peace and blessing be upon you, and may His love fill your hearts with hope every minute of every day. 

Praise God for His goodness, His kindness, and His love! 

Staying Close to the Center

You never think it’s going to happen to you...to your husband or wife or family member. You hear about other people being struck with a horrible disease or illness and you convince yourself it won’t happen to you. No, cancer will not become a part of your life...until it does. 

I re-read my first post and I remembered everything exactly the way I described it. And you know what’s strange? Every now and then, I feel those same feelings all over again. Out of nowhere, I feel terrified, as if I’m hearing the word ‘cancer’ with Anthony’s name in the same sentence for the very first time.  

This afternoon, we’re going to get the results of Anthony’s MRI. The anticipation is sickening. The fear of what might or might not be is maddening. Will I be trying to plug my ears again to block out the doctor’s words? Will I feel the chair (and the rest of my world) fall right out from beneath me once more? I’m seriously thinking about wearing a rubber band around one of my wrists to the appointment. That way, if my vision starts to blur and I feel my mouth moving but can’t hear myself talking, I can SNAP! myself back into reality. I don’t know. Maybe trying to defy nature’s way of softening a blow isn’t such a good idea. 

OK, I have to stop doing this. I have to stop thinking about the worst possible scenario. It’s hard, though. When I think back upon all the tests and procedures and waiting rooms that led to the face to face meetings with all the doctors and specialists....when I do all the math....well, I can’t deny that we’ve received more bad news than good. It’s hard to stay positive and hopeful when the scale is tipped that way. It’s hard to not be scared.

I really wish I could say that I’m not afraid. It’s not that I’m ashamed of being afraid. We’re all afraid of something (or some things). No, I’m not disappointed in myself or embarrassed that I’m scared. I just don’t like the way it feels. It’s uncomfortable and makes me feel sick down to the core. You know that feeling. You know what it’s like to walk around with that knot in your stomach. Sometimes, it feels like you’re going to be sick and the thought of eating makes you even sicker. Then, other times, you feel your stomach churning and you want to put something inside it...anything to fill that pit...just give it something besides itself to gnaw on. 

OK, I have to stop this. If I’m going to make it through this day with my sanity intact, I’m going to have to change the way I’m thinking and adopt a new outlook. Somehow, I’m going to have to make that internal shift and focus upon the positives...no matter how small or insignificant they may seem. I’m going to have to tip the scale back in the positive direction...or at least find that place of balance. That’s what it’s really about...finding balance... moving toward the center.

I can do this. I’ve been doing this. I just have to remember that I’m not alone. First of all, God is with me every single step of the way. He always manages to get His message across to me...to let me know He is all around me and in me. 

Second, I have all of you. Please know this, and believe me when I say that I feel you with me...with us. We are connected through love...through God’s love...and I feel you here. You are waiting and praying for good news, right along with us. Thank you for that. 

And, of course, I have Anthony. My dear, sweet Anthony. I know he’s scared, too. But, I also know that we can get through anything...together. We always have. We have this ‘thing’ together...this super, duper powerful bond of love that sustains us and allows us to forge ahead. I know why it’s so strong...It’s because we’ve always put God in the center of our lives, and our love for each other comes from that center. I can’t forget that. No matter how scared I get, I have to stay focused on that center. 

I can’t wait to tell Anthony that it’s all going to be fine. I’ll remind him to focus on the center, too. He’ll understand, right away. And I know he’ll feel better...calmer. Yep, we’ll make it through this day, no matter what. We’ll stay close to the center and we’ll be just fine. 

Time Is Precious

It’s hard to describe what life is like these days. Sometimes, I feel as though I’m walking around in a daze and I’m not sure what I’m thinking or even feeling. It’s been so hard to write...next to impossible...so I’m forcing myself to sit here and put whatever thoughts come to mind on paper (well, on screen). I’m hoping I’ll get some clarity, maybe learn something about myself that will help me cope with Anthony’s illness a little better...and at the same time, give you all an update on his condition.

Yesterday, Anthony had MRIs of his abdomen and his brain. He also had blood tests to check his overall metabolic functions, as well as the tumor marker level. (Since Anthony has fallen a few times lately, the doctor ordered the MRI of his brain...just to be on the safe side.) 

Tomorrow, Anthony goes to the hospital for his weekly paracentesis. Fluid continues to fill his abdomen and has been increasing in volume the last couple of weeks. Even though no cancer cells have been found in the fluid, as of yet, it is not good that it continues to build up as soon as it is drained. Pulling off the large volumes is very taxing on the body, it causes major shifts in blood pressure, and results in Anthony feeling weak and very tired. But, it is way too uncomfortable if it’s not drained, so he continues to have the procedure every Thursday....and it is usually an all-day affair. (Since his blood pressure drops significantly after the procedure, he has to stay in the recovery area until it comes back up to a safe level before going home. Sometimes, that takes several hours!)

 We see the oncologist on Friday and will find out what the next step is, with regard to further treatment. (The results of the abdominal MRI and Anthony’s latest blood tests will be used to determine the type of treatment [i.e. chemo] he will get.) Hopefully, the MRI will also show if there are any blockages and/or damage to the liver that could be causing all the fluid to collect. One of the hardest things we have to deal with is all the “not knowing.” We are really hoping and praying for some answers on Friday... something to sink our teeth into...something hopeful to hang on to when we feel tired and scared and overwhelmed.

Speaking of tired and scared and overwhelmed, lately, I have been plagued by anxiety attacks of the strangest kind. Some of my thoughts are so scary that I don’t want to give them any more energy by writing about them. I will tell you this much though: My imagination can be quite vivid...frighteningly vivid. During the course of my recent anxiety/panic attacks, my mind has tried to convince me that I will come down with any number of catastrophic illnesses or that I will be destroyed in or consumed by the worst of the worst natural disasters. Crazy stuff. 

I suppose my experiences are not all that uncommon for someone in my position. After all, I am on the frontline of this battlefield with Anthony, and I stand beside him through each firestorm. Sometimes, we both feel like burrowing ourselves deep inside a foxhole and staying there for as long as we can. Let everything fall down around us....as long as we’re snuggled together, we’ll be OK.

Most mornings, I’ll get out of bed early and go downstairs to start the day. But then, it doesn’t take long before I get lonely and miss Anthony’s company, so I go back upstairs. Even though he may be sound asleep, it makes me feel better just to be close to him. And, when Anthony wakes up (even if he just opens his eyes for a second), he smiles as soon as he sees me. He tells me it’s always so comforting to know I’m there. That’s all I need to hear...to know...to be sure...that being there is what’s most important.

Do me a favor...No...Do yourself a favor...If someone in your life needs you, even if it’s just to sit there, quietly, without saying a word, be there. Drop everything and be there. Time goes by so quickly sometimes, that we forget the treasure that lies within every second. It isn’t until you try to stretch out the moments and squeeze out every morsel of life from them, that you come to see how sacred, how sweet, how precious time is...especially when it’s shared with someone you love. 

The Real Deal

Merry Christmas and Happy New Year! 

Yes, I know it’s been quite a while since I have blogged. Don’t think I haven’t thought about it every single day. I have missed writing...tremendously...and, specifically, I have missed writing  to you, more than I can express. During the last month, the  days  just overflowed and toppled into each other, without any breaks or time for me to catch my breath. It’s been one thing after another...

Taking care of someone receiving chemo and radiation treatments five days a week is a full time job, all by itself. Getting Anthony to his treatments became the focal point of our days. Most everything else revolved around those treatments and how they affected him. Special meds, with special directions, at specific times. Special foods, special drinks, special clothes, special sleeping arrangements...etc., etc. We went nowhere without packing a bag with supplies and snacks and meds and a change of clothes, and whatever else I could anticipate needing. Needless to say, we‘ve gone very few places...none of them very far...mostly all of them treatment, doctor, or hospital related. It’s a whole different way of life.

Just as Anthony was suffering the worst of his treatment-related symptoms, tragedy struck our family. We lost our dear cousin, Ryan (only 27 years old), to lymphoma in December. His passing hit home...and it hit hard. Anthony fell into a funk for several days. Only God knows all the thoughts that must have gone through his mind. The same weekend Ryan passed, my sister was admitted to the Intensive Care Unit at Torrance Memorial, in critical condition. She had a urinary tract infection and, due to several other underlying conditions, complications set in, she became septic, and almost died. After more than a week in the hospital, she was finally discharged and continues to slowly recover at home.

Several weeks ago, I mentioned (in one of my emails) that I’d been having some problems with my arms and hands. My symptoms have become more severe, with a significant increase in pain. I can hold a pen only long enough to write my name, and typing....well, I can type a few words before I have to stop, massage my fingers, then rest a bit before continuing. I have seen the doctor a couple times now, and have been going through a series of diagnostic tests. If I thought it would make a difference, I would say that I can’t handle one more thing going wrong, but I know better. The truth is, we all handle what we’re given, as best we can; so, whatever happens, I’ll deal with it. I will let you know when I find out what is going on.

As if all the above was not enough to deal with and keep us (me) very busy, Christmas was still on the calendar and could not be rescheduled. The kids and I managed to put up a tree and a few decorations, here and there...just enough to make the house feel festive and lift our spirits. Anthony loves Christmas, so I really wanted to make things feel as “Christmas-sy” as possible. I am happy to say that, during the last few weeks, he has spent many hours lying on our living room sofa, admiring the tree and the garland-laced mantle, his heart warmed (with or without a fire in the fireplace) by the Spirit of Christmas. Mission accomplished.

So, now that things have calmed down a bit, I have been writing, a little at a time, and have managed to put the following together. I’ve tried to include as many details as possible in order to catch you up on what’s going on with Anthony...specifically with regard to his illness and treatment. Here’s where we are today:

Anthony finished 6 weeks of aggressive treatment, consisting of daily chemotherapy with concurrent radiation, on December 22, 2011. He hung in and endured some really difficult days and nights. He battled debilitating nausea and fatigue, and suffered  through bouts of vomiting and persistent diarrhea. The last 2 weeks of treatment, from my observation, seemed to be the worst, in terms of these awful side effects. He even had to skip a couple of days of treatment, here and there, because he was just too sick and too weak...There was no way he could get up, let alone walk. (The 2 or 3 days he skipped were tacked on at the end, so he didn’t really miss out on any treatments...just postponed them.) 

I wrote the following about a week before his treatments concluded. I didn’t post it then because it was right around the time my cousin passed away and my sister fell ill. Oh...I forgot that right around the same time, I also participated in a Christmas concert at church, directing my choir. I was busy with rehearsals and the performance. (Anthony was too sick to sing with us, but he did attend the concert!) Anyways, it will give you an idea of how the cancer treatments affected Anthony...and me. I called it The Real Deal: Uncensored.

The Real Deal: Uncensored

In the shadows of the dimly lit room, I barely recognize your face. Are those really your eyes, so hollow, so dark, so tired? Where are the cheeks, rosy and round, I’ve held in my hands and kissed over and over and over again? Now, when my lips brush against your face, I can trace the laugh-less contours of your bones. Leaving my kisses in the hollow spaces of what used to be you almost feels as empty as the spaces themselves. 

Is this what happens when a horrible disease ravages the body? Or is this part of the horrible treatment necessary to combat the horrible disease? Fighting fire with fire? It seems more like fighting an atomic bomb with another atomic bomb, just as lethal. How do we tell the difference? Is there a way to find out who’s winning right now? At this point, the treatment and the disease both seem like bad guys and they are duking it out inside my Anthony’s body. And we’re all just standing around watching this thing go down. Waiting. Watching and waiting. Maybe my hair isn’t really falling out....Maybe I’m actually pulling it out because I am so nervous...watching...and waiting.

I keep telling Anthony, “Only five more days of chemo and radiation, Babe. Just five more days.” But, what do I know? What do I know about living one day in hell...one hour in hellish agony? Yesterday was the lowest of the low, the sickest of the sick...every single waking hour...suffering. I understand why he was losing his nerve and thinking about laying down his sword, even if only for a minute. I’m not going to lie...I thought I might walk into the room and see Anthony calmly sitting, waving a little white handkerchief, a flag of surrender. I thought I might find his weapons cast aside, and Anthony resolved, and ready to accept defeat. 

After sitting with him for hours, I finally sneak away for a few minutes when he falls asleep. I retreated, and backed myself into a safe corner and cried. And cried and cried and cried until my eyes were dry and red and sore. When I got up to wash my face, I looked in the mirror, and I didn’t recognize the person staring back. Could that really be me? What happened to my eyes that breathe life into everything they see? With my hands cupped, I filled them with water and splashed it over my face, hoping to erase that lifeless person looking back at me through the mirror. As I slowly opened my eyes, a multitude of faces stared back. Disappointment, confusion, sorrow, fear, anger, devastation...they all looked at me with those hollow eyes, pleading for a sign of hope. When I could muster none, I sank back down to my knees and wept, this time quietly, almost gently. Anything else would have required too much energy, too much feeling.

So this is what it’s like. This is the real deal right here. I hold nothing back. This is part of the journey and, unfortunately, you can’t pick and choose the parts you want. It’s not like a travel package where you get to take this tour or that, eat here or there, browse through an art gallery or see the city sights. Nope. Doesn’t work that way. You get what you get and you do your best to accept it with grace and dignity.

See, you try your best to start each day hopeful. You tell yourself it’s a clean slate, a blank page, and there’s a full palette of colors waiting to paint the day.  You start out hoping and praying for a beautiful picture. Some days, everything falls into place, and you smile with delight. Other days...well...other days, things just don’t come together... Colors clash, proportions are off, and every brush stroke is awkward, labored. But, you hang in there and accept that day like any other. I know...it doesn’t seem fair. And, believe me, it’s definitely not easy. Sometimes, real life is neither fair nor easy.

❀

Back to the present......

In addition to chemo and radiation treatments, for the past seven weeks, Anthony has had a weekly paracentesis...a procedure to drain excess fluid from his abdominal cavity. (He will continue to have this procedure done every Friday, for as long as necessary.) On “paracentesis day” we usually spend several hours at the hospital...if everything goes smoothly. Any glitches in the system, the schedule, the orders, etc., and a few hours quickly turn into a very long day. Each time the procedure is done, some of the fluid is sent to the lab for analysis. The peculiar thing about Anthony’s fluid is that, as to date, no cancer cells have been found in it. None. Both his oncologists, several of the oncology nurses, and many other health care professionals working on his case...all having dealt with ascites (excess fluid in the abdominal cavity) in pancreatic cancer patients...have never seen this happen! We’ve been told that the fluid is usually “full of cancer cells.” Usually. Well, anyone who knows Anthony, knows there is nothing “usual” about him...and I very much mean that as a compliment! 

As of today, Anthony has had about two weeks free from chemo and radiation. He is still very fatigued and continues to suffer with intermittent bouts of nausea, but nothing like before. His doctor told us it would take at least two weeks (without treatments) for him to notice a difference in the way he feels, and we are now starting to see some spots of improvement. As a matter of fact, he had a pretty good day today! We make sure to pay attention to those gifted moments when Anthony actually feels hungry and wants to eat, or when he can be up and about for a few hours without feeling sick or exhausted. These are the moments we live for...the moments we celebrate. Because these are the moments that give us hope.

They are also the moments that give birth to miracles.