Protons, Heart Issues, and Other Woes

Trying to be "Anxious for Nothing."

Trying to be “Anxious for Nothing.”

I’m feeling pretty down today. So much going on it seems, but hoping for some perspective and hope as I know I can get this way, and God always sees me through.

Owen discovered yesterday that the hopeful outcome of radiation therapy as the final step in ridding him of his cancer, now seems rather grim. The radiologist looked at his scans and determined that the location of Owen’s tumor is in such a delicate place in Owen’s heart, especially after the heart itself has been so ravaged by the surgery and the chemotherapy, that he feels radiation would only damage it further. It is his professional opinion that the positive benefits on the cancer do not outweigh the negative effects it would have on Owen’s heart.

“You only get one heart, Owen,” he said.

So he is recommending Proton therapy instead, a newer form of treatment similar to radiation but using some sort of protons instead (hence the name) and supposedly much more gentle. So while that doesn’t sound bad, here is the stressful part. There is a good chance our insurance won’t cover it. And without insurance, my research shows it will cost roughly $30,000. This is money we do not have.

Furthermore, given the scans look good on the CT (We havent’ had a more accurate PET scan yet), it makes me wonder if it is even worth it. Yet, all the research I’ve done, which has included looking at medical journals written within the last year on Thymoma shows that for stage 3 B2 Thymoma, radiation combined with chemotherapy yielded much more success when preventing reoccurrence. Without that double treatment, likelihood of reoccurrence for Owen’s type and stage was very high. But in the end, does it even matter if it’s Proton therapy instead? Where’s the research on proton therapy for Owen? In other words, if the proven radiation therapy is not realistic for Owen, is it worth $30,000 of money we don’t have to pay for another treatment where there is no record or research done on its effectiveness for Owen’s type of cancer and stage in the first place?

So what to do?

Owen is most frustrated by the location of the Proton therapy location. It is in La Jolla, which is a good 40 minutes from our home with typical traffic. He is expected to go every. single. day. For 6 weeks. That is 40 minutes there, about an hour while there, and then 40 minutes back. That is basically 3 hours everyday that cuts out of his work time. And we’d have to find a sitter every morning to take the kids to school in order to get him there on time. At this point, chemotherapy was easier on his work schedule. So he is not happy. Neither am I.

My prayer is that God be guiding all of this. I don’t want Owen to beat cancer only to die of a heart attack. So if radiation is too dangerous than I don’t want it either. Chemotherapy has already ravaged his heart. He is getting palpitations everyday and has been enduring pain in his heart ever since his last chemotherapy treatment 3-4 weeks ago. He is still dealing with other negative effects on his body including tinitus in his ears, tingling and numbness in his fingertips and limbs, and general weakness.

I don’t want his heart issues to worsen. But I don’t want him to get a likely reoccurance of thymoma either. The survival rate for that is much worse. Over the last year, Owen and I have grown so much closer. I am more in love with him than ever and so the fear of losing him, is all the more heart-breaking to me. I want my husband to be with me for the rest of my life. And I want the time we have together to be healthy. Anything that disrupts that or threatens that fills me with anxiety.

If God does not allow proton therapy to be something the insurance pays for, I sure hope he is allowing that because he is telling us he’s got this and that Owen will not be getting a reoccurrence and so we don’t need more treatment. Please pray we have ears to hear God’s voice in this and not our own fears or itching ears.

Finally, after all of this–I am having health issues. And right now, all of our health/medical money is going toward helping Owen. And my issues just seem to be blown off by the traditional Medical establishment. As I seek alternative treatments, I recognize my dire need for a Naturopath, but that will come out of pocket since my insurance won’t cover a Naturopath. Until we get Owen settled though, I am trying to treat myself for my health issues with diet changes, supplements, etc. And I’m just praying that God bring me relief. I don’t want to get too into it until I know for sure if I am right. But I’ve struggled with a sensitive gut for years and finally found some relief when I cut down my dairy significantly. But now it seems that I’m developing more food sensitivities and my hearing issues aren’t improving that much. And on top of that, I had a tubal ligation a year ago when my daughter was born (4th c-section) and I’m starting to develop some issues that I believe may be complications and side effects to that. I’m just praying that God be guiding me through my journey through this process, show grace to me as I seek to treat myself and help provide me the answers needed to heal. I am going to be 36 years old and want the second half of my life to be healthy as well, not burdened by pain and aching all the time in my belly. I’m crying right now just thinking about it.

Lord, please bring me and my husband relief!

In the end, despite the outcome, I am reminded of a song  Alanis Morisette wrote years ago that made such an impact on me. I will post the lyrics down below.

That I would be good, by Alanis Morisette

That I would be good even if I did nothing
That I would be good even if I got the thumbs down
That I would be good if I got and stayed sick
That I would be good even if I gained ten pounds
That I would be fine even if I went bankrupt
That I would be good if I lost my hair and my youth
That I would be great if I was no longer queen
That I would be grand if I was not all knowing
That I would be loved even when I numb myself
That I would be good even when I am overwhelmed
That I would be loved even when I was fuming
That I would be good even if I was clingy
That I would be good even if I lost sanity
That I would be good whether with or without you
So please pray that God guide is in the direction he will have us go, heal us on his own or lead us toward the doctors and treatments that can heal us, and that if he does, or if he doesn’t–that we both be good regardless. I want to be joyous and kind and encouraging and inspiring and giving always. I want to emanate God’s love no matter the ailment or suffering I have in my own life.
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Refiner’s Fire, My Hearts One Desire, Is to be Holy

It’s been a while since I’ve blogged and that makes me sad. Blogging is very cathartic for me. But it seems that ever since I got out of summer school, where I was given two hours a day of writing time, I just haven’t had time to blog. And ever since Owen got diagnosed with Cancer, I haven’t had much time to do all the other “extra-curricular” activities I had been doing before either.

God is with me in this fireWhere I Was

Prior to Owen’s diagnosis, I was working daily on my marketing campaigns for my children’s book How to Love Like Jesus, developing the content and finding the programmers for an awesome marriage app with my business partner Nikki Marie at TheMomIWantToBe.Com, and continuing writing resumes and memoirs for clients. Then two days a week I was exercising in a fitness camp and had even lost my pregnancy weight–finally down to my pre-pregnancy weight right around the time we learned what Owen had. I was feeling really healthy. Really energetic. And generally joyful through Owen’s sickness, we had yet to understand.

Where I Am
  1. Now I’ve gained all that weight back–eating carbs again and haven’t found the time to exercise.
  2. I’m not blogging.
  3. As for the marriage app– haven’t touched that project at all. Of course this is also because Nikki just had a baby and therefore hasn’t pushed me on taking the next step.
  4. I’ve replaced that time with taking care of my sick husband, my kids, and both my husband’s and my duties with our house. (that alone will take up every second of time!)

And add what I’m not doing, I’ve struggling with a few other complications.

  1. My back has started to really hurt. I don’t know if it’s that I started doing more of the heavy lifting after Owen’s surgery or because my 4th C-section has led to some really rough scar tissue pulling on my back muscles, or a combination of both. But I’m in pain. A lot. And I pray it is just temporary. I can’t imagine living with this pain the rest of my life.
  2. Little Scotland has been struggling with constipation as she has taken in more formula and solid food (my milk supply crashed after Owen’s diagnosis) which it has led to a little tear in her rear-end that really hurts her and she no longer wants to eat solid food. She’s 9 months old. Just wants a bottle now. Doctor is not happy. Wants me getting her back into food. Says once her tear heals she should forget and eventually hunger will win. But I’ve got to let her deal with her hunger. Not just give her a bottle because that’s what she wants. So I’ve got a fussy baby right now.
  3. Owen’s 2nd round of chemo hit him much harder than the 1st round. So what we were expecting to last just 5 days, lasted 9 days and even now which is day 12 he still has to take a nap, gets nauseous, and feels generally irritable from the effects of the chemo, which then provokes me. We’ve had way more arguments and spats this time around than the previous one. It’s been emotionally exhausting.

So as you can see I’m just tapped. I’ve got no creative juices. I’m just trying to get through it all. I cry about once every day over something. I’ve blown it at times as a mother and a wife because at times I struggle with my own selfish desires.

It’s easy to be a giver and caretaker when things are good. But when times get tough, there’s a breaking point, and then selfishness kicks in–What about me? What about my pain? What about my needs? And I think that when Owen is feeling pretty well and even when he is feeling so sick there’s not logical reason to believe he could meet my needs at that time. But the thoughts still come. I’ve been struggling a lot lately with those feelings. And then when I get into that, I don’t serve as joyfully as I once did. Selfishness reveals the ickiness inside me that I’m desperate for God to purge me from. Maybe this is part of the plan, part of why I have to go through this. God uses all things for good in the lives of those who love him and are called according to his purpose. God disciplines whose he loves. God’s spirit sanctifies and convicts his Children.

So I’ve been praying a lot–thanking God for the blessings in my life and asking him for forgiveness for my selfishness and the strength and love to keep serving my husband and kids above myself. Right now as I write this, I feel His Spirit inside me telling me this truth:

This is only a season. And even in this season of back pain and a sick husband and an endless list of to-dos, there is still much I’m blessed by.

My Blessings in this Trial
  1. My raise which as afforded me the finances to hire a housekeeper twice a month to do the deep cleaning.
  2. Extra time with my kids during summer vacation.
  3. Owen is so honest with me. And his transparency about his struggles and thoughts have been rather humbling and inspiring
  4. Our friends and church family who have  blessed our family with donations, meals, prayers, and emotional support.
  5. My husband who has not allowed his Cancer to stop him from running his business and bringing in income.
  6. Owen’s family who have come out to help us with our house needs (landscaping, housecleaning, cooking, and babysitting).
  7. Owen’s friend and masseuse Evan has given me one massage and offered me one more hour for free to work specifically on my pained area due to my extra work and scar tissue.
  8. Benjamin, my third child has finally accepted potty-training and is cooperating now with going to the bathroom in the potty. Buying one set of diapers is right around the corner!
  9. Reading Proverbs this summer has really opened my eyes to recognizing my own foolishness and therefore, desire for wisdom and growth as a person and child of God.
  10. My wonderful time in the Writing Project, working with other teachers and reigniting a love for teaching that had waned over time.

Well I’m glad I wrote this. I know this blog was not craftily put-together. I wrote this one more for myself than for my readers. More because despite my lack of creativity or eloquence, I needed to get my thoughts down. I needed to analyze my situation and find meaning and purpose in it all. And it has worked.

silversmith sweats over his fireIt doesn’t mean that my back has stopped hurting, that my Scotty has started eating solids, that my husband feels well, that my house is in order, that my app will bet made any time soon, or that my husband and I will be free from arguments. But it does mean that despite all those struggles, God loves me. And he is using this all for good. I just have to be in this fire with him for a while. It’s the only way for silver and gold to be refined. And its the only way God can refine me. But just like a Goldsmith or a silversmith, who knows the metal is finally ready when he sees his own image in its reflection, God has to sweat over me and with me in this heat to form me into the image he has planned for me–His Image. That is love. And so while it may seem like I’m someone cursed at times, I’m really a blessed woman. My husband too.

This whole trial reminds me of a hymnal I remember singing in the back pews of CBC (Community Baptist Church) of Alta Loma when I was a girl:

Refiner’s Fire

My hearts one desire

is to be holy,

set apart by you my master

ready to do your will.

Night

nightI love the night. While the sky darkens and the sun hides its head under the horizon, reality and what really matters become clearer in my home.

As a working mom, my day is filled with chaos— most days are a spit up cleaning, diaper changing, The Regular Show watching, grocery shopping, worker beeing, traffic sitting, copy machines breaking, coffee spilling, kids screaming, lesson planning, internet researching, phone texting, Facebook scrolling, dinner scrambling, dirty boy washing, loud music playing kind of day. It’s hard to see and hear and be under it all.

But at night…

We cuddle with our children as we settle for bed. We read stories or tell stories and above all else, we pray together. Owen and I listen to their prayers first as we close our eyes and then model other ways to pray. But sometimes their prayers are our model—pure and unadulterated, open to see what we as adults don’t see in the hubbub of the loud and distracting day.

Thank you for the funny people in our town

Thank you for my toes

Thank you for our pictures

At night as Owen and I lay in bed, I’ll wake up in the stillness to feel him reach out his arm over to mine …and I know he is saying, “I’m not mad at you for that spat we had yesterday afternoon right before dinner. I love you.” And then I scoot over closer to him and make sure that at least one part of my body is touching his thereafter–a foot, a hand, a leg.

The humble truth comes out at night. None of the chaos matters. You matter. We matter. God matters.

At night-time, we talk about our day, we ask for advise, share our fears, our laughter, our conquests and need for growth.

We have time to be still at night. To breathe in deeply and know we are here and we have a purpose and we are blessed. That God is here with us. That we are each others’ biggest fans.

Night brings us back to center like a Sunday sermon, giving us the strength to make it through the next day.

Beginnings

Beginnings (1)Sitting in a Writing Workshop at Cal State San Marcos, my teacher gives us a word of the day to write on for 6 minutes. We wait eagerly with pens in hands.

“Beginnings,” she says.

Normally I like beginnings–it reminds me fresh starts–clean sheets, swept floors, fresh air, new home, new babies with little pink noses and corn kernel toes, 1st day of school, excitement and goals, new year’s resolutions. They remind me of fresh green plants. Cool blue water.

But not today.

Today the first thing I think of is that this week my husband begins chemotherapy. This beginning is one I’d rather fast-forward to the end.

This is not clean or blue or fresh. This beginning is vile.

It will fill my husband’s throat with bile and stain our bed sheets with sweat that smells like poison so strong,

I will throw them out when we are done in 5 months.

This marks the beginning of foggy thinking

and of needles in the arm that are inserted by cold, rubbery gloved hands

meant to protect the nurses from the toxic liquid

they will drip into my husband’s veins for one hour, two hours, four hours, eight.

This is the beginning of a summer with neither beaches or swim parties, nor hikes in the hills on sunny days

…can’t have his skin burn.

This is the beginning of hair loss, and no sex for 24-48 hours after chemo

because the chemicals will leach out of everything

as it, “kills everything, everything” his oncologist repeated in his office last week, hands waving through the air to emphasize his point.

Everything except Owen. My love, Owen.

Who wants that?

I hate this post.

I don’t want to publish this post.

I’m supposed to be optimistic: a positive role model. A vision of courage. A cheerleader. I’m supposed to inspire people with my faith, and avoid awkward moments where my audience doesn’t know what to say so they respond with canned comments that only make me want to scream like–“It’s all for the best” or “Just think about the good this will do in the end, right?”

And they are right. But it doesn’t make it easy. And I do have faith. I am a cheerleader. I am courageous.

I am.

Just not today.

Can I get one day? Just one day to be depressed and voice it on a public page and share with everyone that I’m NOT looking forward to this beginning?

Vacation (1)The only thing I look forward to is the end.

That bright, clean, blue end where we can plan our new years resolutions for 2016.
Where we can throw away the prescriptions and the Peptobismol and the SPF 100.

Where we can go on vigorous hikes on hot days, finding rest in the shade to sip the cool water in our canteens and talk nothing more about the pain or the nausea or fatigue, but instead about that sunny summer cruise along the Pacific ocean beaches we just took. 

Where we can move from sickness and on to health in our marriage.

Where we can submerge ourselves in its new waters and wash this year all away and reemerge revived and reborn.

Where we can both grow our hair out long and wild…and stay up until late together eating pizza and laughing about nothing…and make love anytime we want on clean smelling sheets.

I want to skip this beginning and get to the end. The end of cancer and the beginning of our resurected life where nothing more will be taken for granted. 

Circles

Chocolate eyesLast night I saw my 2-year-old son draw a circle on his magnetized drawing board.

“Mommy, wanna see me dwah a circle?” he asked eagerly.

“Yes!” I exclaimed, “I would LOVE to see you draw a circle.”

And I meant it. In my current world of cancer and bills, errands and cleaning, there would have been nothing else in the world I would want to see more in that very moment than watch my son draw a circle.

And he did. Oblong but connected and certainly circular, he drew one—chubby fingers clenching his plastic magnet pen, attached to the string of the board.

Then he said he’d turn it into Daddy. He drew two more circles for eyes and a third circle for a mouth.

“Where’s his hair?” I asked.

And he quickly scribbled a patch of hair on the top of his circle Daddy head.

It was his first drawing of something that took a real shape. No longer the scribbles where I’d have to ask what it was. Oh how I wanted to keep that drawing forever–to tuck that precious circle away in my scrapbook box until the day I could frame it in construction paper and etch it with lace on a background covered in photographs of his dark brown, orb-shaped eyes that look like chocolate when he cries or smiles or laughs.

But I couldn’t–he erased it before I could even take out my phone and snap an Instagram worthy shot.

So instead I frame his picture on a page in my notebook, etched with words too minuscule and insufficient to capture its impression on my heart and my mind.

Coming to Terms with Cancer

In this together!!

In this together!!

Today Owen came home from the hospital. He had a strumectomy done to remove the 12 cm sized tumor growing in his chest–a malignant thymoma. When the CT scan was performed a month ago, the oncologist said it looked like it was in stage 2 and it was the size of like a tangerine. But this one was the size of a grapefruit, the largest the thoracic surgeon had ever seen in his career (and he has been a surgeon for like 40 years!) and it had grown into stage 3 cancer–invading his heart.

So they couldn’t remove all of it. Had to leave the part of the tumor on the heart alone. It has left an exclamation mark scar on his chest. I knew that meant either radiation or chemo or both. Deep down, I was holding out for just radiation. But sure enough, on Wednesday, the oncologist came in and explained to us the treatment plan in his thick Hebrew accent. We held hands hearing about all the chemical combinations and the side effects–  hair loss, fatigue, nausea, weight gain. He used words like “aggressive” and “kill everything” to explain the process but encouraged us with words like “you are strong, you will be able to handle it.” Supposedly the research suggests that with the chemo combination  often called PAC, performed every 21 days for 4-6 sessions and included with it a month of daily radiation at UCSD, Owen will have a 80-90% chance of being cured.

I don’t like those numbers. I want 100%. I can’t even imagine a world if that 10-20% chance comes crashing through our lives. That would mean more chemo. More radiation. More suffering.  And what if, it is never cured? Then what? I don’t even want to imagine. So I cling to what Owen says.

“You know the strongest man you’ve ever met going through Chemo, doctor?” He said, matter-of-factly.

“Yes,” the doctor replied, questioningly.

“That will be me, doctor.” I loved that.

Given we were already mentally preparing for this talk, however, it didn’t come nearly as emotionally shocking as it did when we were in the hospital a month ago, and the first doctor from upstairs came down and suggested the word Cancer with her concerned eyes. We were not expecting that. That was the moment that slowed down, where like in the movies, the sound quiets and all you see are the characters’ expressions as they hear the grim news. The doctor pulls out the documents and solemnly words the news. The wife stares blankly at the doctor and puts her hand on her husband’s knee. He leans down and rests his head in his hands. And you know. You as the audience know they just heard they’ve got cancer. But when you are the one in that scene, it feels like a dream. At least it did for me. Is this real? This wasn’t part of my life plan.

But still, I was emotionally jarred by the official news that chemo was next. It made everything all the more real. Even more real than the surgery. This is what I think of when I hear of cancer. I think of the chemo–the monster that kills cancer patients faster than the cancer can kill them–but somehow, doesn’t kill them, just leaving them bald, frail, weak, and in bed. So after the doctor left the room, I went into the bathroom and cried. Cried for my husband. Cried for me and for the kids. I don’t want to go down this road. I don’t want to have to see my husband in that state. There are many more tears ahead and I don’t want to cry anymore.

Today I had time to process it a bit more. In the quiet of the day as my husband recovered on the couch and I paid the medical bills we had already accumulated with the blessing of donations in our GoFundMe Campaign, an intense chest pain came over me–anxiety. Almost an attack. But I prayed and asked for prayer. I decided–no cleaning, no added stress. Instead, I spent an hour designing a banner for a buy, sell, trade group I’m co-administering on Facebook with a couple of close friends. It was medicinal. I need a creative outlet. In the end, I think today’s anxiety came today of all days and not earlier because my body is finally having time to just feel. I’ve been in survival mode for a while. I just hope my milk supply goes back up. The baby is now drinking mainly formula, because 2 weeks ago, once Owen started getting another flare up (chest pains, nausea, night sweats, fatigue, weakness, poor appetite) my supply plummeted. In my mind, I felt like I was so strong. But the body knows. Survival mode kicked in. And that means less milk for my baby.

wedding handsOwen went through it too–negative emotions I mean. Some friends of ours, the Pallottos, came over tonight and took care of the kids for a couple of hours, asking us to go out for a while and just be together. We did. It was good for us. We went to Red Lobster and picked at our crab legs between holding hands, talking, and sharing silence. We laughed. We even cried. My husband’s lips were ash and he didn’t have much of an appetite. He broke down a couple of times unexpectedly. We held hands and for the first time in our marriage, remembered that in the big scheme of this life–it is the two of us in our family who are one. Our kids will grow up one day and leave and they will not be with us. It will be us two. I will be with him through this cancer. And he, God willing, will be with me when I experience my big issue in the future, whatever that may be. It became so much more real tonight. So this is marriage. This is sickness and health. And strangely, it brought me comfort and an overflowing surge of love. I love him. I love this man. And he is mine and I am his till death do us part.

I drove us back home afterward, and felt a poem forming in my mind about my mixed emotions– sadness, anger, and yet love and joy still.

I told Owen–“I have a poem forming in my mind. It’s called the Paradox of Pain. You know–I want to laugh, I want to cry.”

Then Owen replied quickly, “…I want to stab you in the eye.”

“Yes!” I cried, “You know!”

psalm 56 3I write this blog because I believe in being translucent. I don’t think we can truly know each other and love each other unless we allow ourselves to see one another as we truly are. Listen, I know the truth. I know God loves us. I know he has a plan for us. I know he will use this for good. I know he will be there with us through it all. I know this. And knowing that certainly gives us a hope and a strength, I could no way have on my own. But it doesn’t mean that I want it. I don’t want it. I want a life of bliss and no suffering.

Ironically, I say that knowing that it’s silly and knowing that it is through our suffering that we become strong and better people, which I want too. I want to grow closer to Christ. I want to be stronger. I want to be more compassionate toward others. I want to grow closer to my husband. I want to appreciate life more and take less for granted. I want all of that too. But you can’t get all that growth, without some pruning. Pruning cuts and it pinches and it hurts. It hurts! But I do know that the Master Gardner has a beautiful plan for his garden. And we get to be a part of that plan. I do trust in that. And while today was a tough day and not the last of those tough days, I know that because of what I know, there will be many great days too.

Thanks for reading. If you have gone through cancer, how did you deal? How did you come to terms and move forward? Would love to know more of your stories.

My Proof Copy is Here!

book proof 2I have been going back and forth with the book designer I hired to make sure the layout looked good in print when using Amazon’s self-publishing contractor called Create Space. But I finally got my proof and I am very happy with it. The skin shade of my darker-skinned characters is a bit darker than it looked on the digital pdf, so their facial features are a bit harder to see, but otherwise, my characters look mostly close to what I had intended. The picture of me at the back is slightly warmer in its color than the original but still looks like me so that is good. 🙂

But here is the most exciting part: The book is effective. 

How do I know?

I tested it out last night on my son, Kanan, for whom I originally wrote this book!

  • We sat down and read the book, making sure after each section to go over the questions and talk about it. He thoughtfully reflected on each one–thinking about how he could demonstrate patience, politeness, kindness, etc.
  • At the end of the book, I prompt the child to think about which areas of love they struggle on most. Kanan was able to go back and flip to 4 different areas where he struggles: jealousy, counting wrongs of others, delighting in wrongdoing, and losing hope in others.
  • Then I prompted him to pray to Jesus to help him in those areas, just like my book advises. We prayed together. It was so awesome watching my son become convicted by the Word of God.

No, my book is not the bible, but it takes a verse from the bible, and breaks it down word-by-word to help them understand. A child cannot be convicted by the Word of God if the child does not understand it. And if we only tell them what love is, but don’t show them, and give them time to think about their own actions, they won’t think about it long enough to become convicted and grow.

I love God’s word. His word convicts us of our sin, but thankfully, it reminds us as well that we have a savior who paid the price for us and with his spirit, can give us the power to change. And if we mess up and stumble, he is there to help us up to try again, washing every stumble away. We can then do well in our actions, not to save us, but because we are saved. It is a beautiful, harmonious, dichotomy. 

I’ll approve the proof tonight and keep you posted on it’s release.

UPDATE: The Book is now available for purchase! Check it out here or click on the link on the side bar to the right.