Six Tips for Finding Financial Aid for Cancer Patients

“Twenty-seven THOUSAND, six-hundred and six dollars?” my voice inched up the panic scale as I read the number out loud to an empty room and the kitchen table. “For ONE infusion of Rituximab?” I checked the number again, then flipped to the last page of the 25-page hospital bill. “That would explain the pharmacy bill of $135,870.25,” I muttered. And the total hospital bill for a 28-day stay of $249,190.38. I wondered if someone offered financial aid for cancer.

6 tips for finding financial aid for #cancer treatment http://wp.me/p2UZoK-4i via @blestbutstrest #caregiver

At the time, Rituximab was an new drug.

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Feeling Dismal? You Are Not Alone

Jesus felt your painDear Friend,

I know the day seems dismal and dreary despite the summer sun shining brightly outside your window. I know that each breath requires a herculean effort and retreat into a dark hole seems like the only option.

I know how difficult you find it to text, to call, to reach out through your fog and find a friend (after all, you think you don’t deserve friendship). I understand your resistance when friends try to force themselves and their opinions on you and what you should do.  You think you are unworthy and unhelpable and no one has ever felt like you feel right now.

The crisis you find yourself in is deeper than a spiritual crisis (although we pray daily that the Shepherd will guide you towards the help you need). Do not feel guilty because your ‘faith isn’t strong enough.’

Do not attempt to heal yourself—that’s like telling a cancer patient to cut out his own tumor or just pray it away. Don’t let embarrassment keep you from seeking the professional help that could start you on your journey to wholeness.

Depression manifests itself in many ways—physical illness, impulsive eating, emotional outburst or lack of feeling. Cancer manifests itself in many ways, too. You can’t cure either one on your own.

There is no shame in admitting that you need help. There is no shame in taking medication or participating in counseling or even going to a hospital. Do whatever it takes to discover the causes of your condition. Explore the treatments and the healing and embrace them wholeheartedly.

And just as I pray for my friends that face cancer, know that I hold you up in prayer as well. I have a friend who felt just like you do.

Jesus suffered the same darkness that you experience. “Jesus told his disciples, “Sit here while I pray.” He took Peter, James, and John with him. He plunged into a sinkhole of dreadful agony. He told them, “I feel bad enough right now to die. Stay here and keep vigil with me.” (Mark 14:32-34, The Message).

And so I will keep vigil with you.  You do not suffer alone. Jesus knows your burden. (tweet this)

He will guide you to the help that you need. Embrace the help that he offers.

You are not alone. Ever.

 

Linking up with Kaitlyn Bouchillon and other encouragers.

The Messenger (Dr. Doom) Takes a Seat

Dr. Doom Takes a Seat

Dr. Doom* came into the room and sat on Pedro’s hospital bed. He sighed and held his hands together. He leaned over and fiddled with the IV lines and shook his head. Pedro didn’t look good.Doom

“He doesn’t have any white blood cells,” Dr. Doom stated.

His news didn’t surprise me. After all, Pedro had just gone through a round of ‘salvage chemo’ (another term I never bothered to investigate too closely).

A plastic eye patch covered his right eye—which no longer closed due to the paralysis in his facial muscles caused by the lymphoma cells in his brain fluids. I watched the blood in his vessels flow through the skin in the sunken spots to the sides of his eyes.

“It’s a race between the yeast infection in his blood and his white blood cells,” Dr. Doom said. He looked at me for the first time.

I nodded and smiled. “What options do we have?” I chirped.

Dr. Doom looked a little startled. “There’s always a white-blood cell transplant,” he mused.

I nodded again. I probably looked like a bobble-head doll. “Where do we get the white blood cells?” (more…)

No Room in the Nave

(Would You Want YOUR Friend to go Through THIS?)

Insurance doesn't pay for caregivers who travel with an ill family member.

Insurance doesn’t pay for caregivers who travel with an ill family member.

No Room in the Nave

I stood on the busy street corner, staring at the imposing edifice rising from the concrete jungle in the shadows of nightfall. Churches in inner cities sure looked different from the ones back home in Montana.

Glancing nervously about, I checked the directions jotted on my suddenly cold palm. MUNI to route five, route five to 10th Street stop. Two blocks from bus stop. I stepped to the left, then the right, shifting the overnight bag that dug into my shoulder, hoping to find comfort and cell service. The phone started to ring. At last!

“Hello, Pastor Bob speaking.”

“Yes, um, my name is Anita and my husband has cancer and is at UCSF and a friend told me that your church has a guest room and I was wondering if I could spend the night there.” No point in beating around the bush. My exhaustion demanded a place to stay.

The silence on the other end made me check my phone once again for service. “Hello? Can you hear me now?” (more…)

Broken, Tattered, Beautiful

The Monarch butterfly travels thousands of miles and weathers countless storms--but it remains beautiful.

The Monarch butterfly travels thousands of miles and weathers countless storms–but it remains beautiful.

I wandered the halls of the huge hospital, looking for a chapel. For the past ten hours Pedro had been convulsing and incoherent. After the first episode (less than 24 hours after his arrival at UCSF via air ambulance), the doctors had moved him to a critical care unit.

I had functioned on so little sleep for so long that my every action seemed disembodied. I couldn’t seem to grasp the simplest directions (such as how to push an elevator button and get off on the correct floor), yet I refused to ask for help—to ask for a chapel would smack of a helpless, defeated attitude.

But I needed a chapel. I finally saw a small sign that led to a miniscule chapel that turned out to be devoid of people. Perfect.

“Why did you open up a bed at a hospital where the doctors would know how to treat Pedro,” I shouted in a whisper to God. “And yet he hasn’t responded to my voice since last night? That makes him worse, not better, doesn’t it, God?”

I clutched a notebook in my lap and stared blankly at my record of what had transpired in the past 12 hours. I had sat in the critical care unit and faithfully recorded Pedro’s every move and snippets of the words he spoke. He babbled about students he’d taught three years ago. He moaned incoherent words while he sat up and swung his legs over the hospital bed.

“Is THIS better?” I asked God. “We traveled so far. YOU arranged for the miracle that brought us here.” I allowed a few self-pitying tears to slip out of my eyes.

I know the plans I have for you, my child,” a voice whispered in the silence of the miniscule chapel. “And the plans I have for him.

I sank into the seat and let the tears flow freely. I felt battered, broken and unable to fight any longer. I looked down at the notebook again, and realized that my efforts would do nothing. Me keeping track of Pedro’s every movement through the long hours of the night would not change the outcome of his condition—it would not heal his cancer or give the doctors insight into how to treat it.

Any healing that took place would happen because God ordained it. I would have to shed my obsession that MY efforts kept him alive in between God’s miracles. The journey might take a long time. I might come out the other end feeling even more battered and broken.

But I knew now that broken IS beautiful—as long as the broken pieces and tattered thoughts rested in the light of his love.

I returned to the hospital room to wait for the next part of my journey towards beautiful.

Where has your journey towards beautiful led you?

I’m joining Holley Gerth and other bloggers for coffee this morning—coffee for your heart. Join us?  Coffee-for-Your-Heart-150
I’m also linking up with Jennifer Dukes Lee and Tell His Story

Happy-Face State of Grace

Sometimes, the grace of God protects you from news that could overwhelm you.

Sometimes, the grace of God protects you from news that could overwhelm you.

Today I’m linking up with Holley Gerth with some Coffee for Your Heart.  It’s a strong cup of coffee this morning, friend.  But I want to encourage you and let you know that God’s grace covers in ways you may not realize until much later.

“How’s your husband doing?” a vaguely familiar lady asked as I stood looking blankly at the library’s free magazine collection.

I smiled. “He’s hanging in there,” I assured her. “We leave for San Francisco for further treatments tomorrow.

“I’m Alicia, from the furniture store,” she reminded me.

“How could I forget?” I had never lived in a small town where people actually remembered details about you. “You were so helpful!”

“Did you ever find a recliner?” she asked.

Not only did this kind soul remember my husband’s cancer diagnosis, but she remembered the specific type of furniture I had looked for. That worried me a bit. Had I spilled my guts to a complete stranger? “No,” I replied. “My husband went into remission rather quickly, and we found him a comfortable deck chair that we could carry outside. He loves hanging out in the front lawn.”

“That’s nice. I’m so glad to hear he’s doing better.”

The details of our first encounter came back to me. Sometimes, I had difficulties remembering where I’d met someone and what I’d told them…I tend to talk too much when I’m nervous.

“Actually, he’s back in the hospital, but we just got news today that a bed opened up for him in the oncology unit at University of California San Francisco in California.” I smiled again, this time a more genuine one.

“I’m sorry,” Alicia said. Honest concern clouded her features.

“It’s ok,” I smiled again. “It’s a large hospital and they will know how to treat his cancer.”

“I’m glad he’ll get help,” Alicia gushed. “I hear there’s a really sad case at the hospital now. A young man has inoperable brain cancer.”

“How tragic,” I murmured.

“It is!” she conceded. “He has two young daughters and the doctors can’t do anything for him.”

“Wow,” I answered, feeling sudden pity for the wife and children, “that’s horrible!” I glanced at my watch. So much to do. “I’ll have to look for them this evening when I see Pedro. Thanks for asking about him.” Alicia smiled her reply as she hurried out of the library. I selected a couple of random magazines, and suddenly remembered that I needed to talk to a librarian and explain my late books.

“Excuse me,” I said with a smile, “I need to ask if there’s anything I can do about the late fees on these books.” I held up the offending children’s books and looked my most apologetic. “My husband has cancer and—“

“I spoke with you earlier this summer!” the librarian exclaimed. “How’s he doing?”

“Hanging in there,” I smiled in amusement but thought to myself, “Which is hard to do when one has lymphoma cells multiplying like bunnies in one’s brain fluids.” Someone else recognized me.

“Don’t worry about those fines.” The librarian took the books from me. “Life must be pretty hectic for you right now.” She tapped on her keyboard and my fines magically disappeared.

“If only cancer would disappear like that,” I thought. “Thank you so much!”

“Don’t worry, honey,” the librarian replied. “I can just tell from your smile that he’s getting better.”

If only my happy face mask could restore my husband’s health.

That evening tears filled my eyes as Laura and Sarah ran toward me down the hospital hallway. My parents walked more slowly behind them, and I just couldn’t believe all the ways God had blessed us: My parents had moved in with us to watch our children; a patient liaison who had arranged for an air ambulance for Pedro’s flight to San Francisco; community members who cared enough to ask; a kind staff at Bozeman Deaconess Hospital. How could I wrench myself away from this little community and throw myself on the mercies of a big teaching hospital whose employees probably outnumbered the population of Bozeman.

I took a deep breath and put on my happy face, excited to share our good news with the girls, even if it meant separation for who knew how long. The important thing remained—Pedro would get help!

When visiting hours ended, I hugged the girls one last time. “Will we see you tomorrow?” Laura asked.

“I don’t know,” I answered. “I won’t know until tomorrow what time our plane leaves. I promise I’ll come to the house and let you know and say goodbye if I have time. I f I don’t, I’ll call you for sure.”

“Ok.” I could see the uncertainty and sadness and the unanswered questions. But I couldn’t answer them yet.

I hugged them both again, my arms aching for that other mother with small children, girls, I think Alicia said. I just had to explain a trip to another city. How could that poor mother explain to her daughters that they were losing their daddy to an inoperable brain tumor?

Laura and Sarah walked back down the hallway—a hallway that seemed to darken and stretch and swallow my two small daughters as I prepared to carry my husband with cancer in his brain off into the unknown. I shook myself and looked around. I should find that other woman. Maybe I could comfort her in some way.

***

I wandered around the hospital for a good twenty minutes, looking for the other woman with two young girls and reminiscing about the time I’d spent there over the last five months. The short stays, the long stays, the stays where the cafeteria ladies inadvertently gave me the employee discount because I ate there so often, the sweet nurses and CNAs, and he doctors had tried all they could, but who seemed to have given up hope.

I finally wandered back to Pedro’s room and prepared my cot for another night in the hospital.

I never did find that lady with the terminal husband and two small daughters.

How has God’s grace shielded you?
Link up with other talking about words of life here and Telling His Story.

A Soft Gentle Voice

Hopeful Anesthetic

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A precious memory from the beginning of our journey.

A precious memory from the beginning of our journey.

The anesthesiologist let us know, in subtle ways, that he didn’t really appreciate having this emergency procedure to squeeze in amongst all the other operations scheduled for the day.

He seemed a little impatient, a little harried, and just a little unsettled that we parents were still standing by Andrew’s gurney. Of course, at this point in the journey, we didn’t have a clue where we should be standing.

We’d stood outside the chemo room while Andrew was given his first dose of cell-killing poison. We’d been outside the treatment room while they drilled for marrow and poked a giant hole in his spine to see if the cancer was there, and we’d been standing at the bedside through discussions and procedures we hadn’t even known existed.

This time we were standing beside the gurney, awaiting the installation of Andrew’s port in his chest. The anesthesiologist bustled around, doing his thing in readying Andrew for his operation. He informed us that we could stay until Andrew went to sleep. Yeah, we thought so, too.

As the drug was injected into Andrew’s IV tube, his blinks slowed way down, and he looked up at us with bewilderment. He blinked long again and began to sing softly, “Sing hallelujah to the Lord.”

The anesthesiologist looked up from the tube and impatiently probed, “What did he say? That made no sense.”

Andrew sighed dramatically and slowly, and then a little more loudly, sang the second line of the song, “Sing hallelujah to the Lord!” Then he drifted off to sleep.

We knew no matter the outcome of the operation, Andrew was going to all right.

 

This post is part of the Not So (Small) Stories: Fourth Edition–where we write about ‘song’.
I STILL HATE PICKLES

I’m linking up with Tell His Story–if you’d like to know how to join, click the icon.

A Tree, A Friend, A Prayer

This Willow Tree figurine perfectly describes one of my dearest community members.

This Willow Tree figurine perfectly describes one of my dearest community members.

The first non-family member I called when Pedro received his cancer diagnosis was my college roommate, Carolyn Sturges. She’s the kind of friend that I only see every couple of years, but our conversations pick up where they left off the last time—whether it was a phone call six months ago, or a visit three years ago.

“Pedro has non-Hodgkin’s lymphoma,” I announced bluntly.

“Oh, Anita,” Carolyn murmured, “I’m so sorry. We’ll pray for you,” she promised. “Let me know if there’s any way I can help.”

Two months later, I called her up, “Carolyn, could you give my girls a ride to summer camp?”

“Of course,” Carolyn answered, before even hearing the whole plan. “How’s Pedro doing?” she asked. “We pray for him every day.”

“He’s in remission—they think he’ll need just one more treatment, and it’s scheduled for the Friday before the girls are supposed to be at camp.”

“That’s wonderful! When will the girls be here?”

“I hate to impose, but could they come four or five days early?”

“Not a problem. We love having them visit with us.” I knew she meant it.

Pedro felt well enough to go camping at Big Lake during the last few days of camp, so we drove to central Oregon and enjoyed some peaceful evenings with just the two of us in our RV. We picked up the girls on Sunday morning and headed home, stopping for the night at Carolyn’s. By the time we reached Red Lodge, the niggling headache that had been bothering Pedro had turned into a full-blown, raging headache that caused him to vomit at the least movement.

We pulled into a campground late at night, hoping that all he needed was a break from the motion. Unfortunately, Pedro wasn’t any better for having stopped. If anything, he was worse. By the time we reached Bozeman, both girls were thoroughly traumatized from Pedro’s vomiting (he is a wretched retcher who gets esophageal tears when he vomits).

Over the next few days, the vomiting and headaches worsened. Finally, we went to the ER to see if they had any ideas. They admitted him for pain management, and started testing him.

“Pedro’s cancer has relapsed,” I told Carolyn. “It’s crossed the blood-brain barrier and the lymphoma cells are in his spinal fluids.”

“Oh, Anita, I’m so sorry,” she said. Once again, I could feel the empathy. “Let us know if there’s anything we can do. We’ll be praying for you guys.”

Over the next few months, Pedro deteriorated rapidly. By October, a secondary infection almost claimed his life. I shot desperate prayer request emails off on a daily basis. Miraculously, the tide turned and Pedro started to recover. The doctors finally declared the cancer vanquished and the time for a stem-cell transplant had arrived.

Stem-cell harvesting should be a short, three-days-at-the-most process. Pedro, of course, defied all odds. After two weeks of daily apheresis and Neupogen shots to the stomach, we were starting to feel the financial crunch of living in hotels and wandering around the city looking for food Pedro could taste.

Our daily routine started at seven, when we would wake up and ride the MUNI to UCSF and Pedro would check in to the apheresis unit. I would wander off to Starbucks to eat my breakfast, then look for Internet service to hunt for cheap flights home or hotel reservations. By one or two, Pedro would finish, and we would leave in search of Indian food. Because we were living day-to-day—never knowing if today would be the last day of apheresis, our hotel reservations were hit and miss. Some days I’d find a deal for two nights at a hotel, but when I’d look online the following day, there would be no cheap rooms left and we’d have to switch hotels.

“Anita! How are you?” Carolyn’s voice warmed my day. “We’re in town and we’d love to stop by and see you guys!”

I explained where our hotel was, and waited impatiently for Pedro’s apheresis to finish so I could share the good news with him.

“Mark and Carolyn are in town and they’re meeting us for lunch!”

“Cool,” he answered with a lopsided smile. “They like Indian?”

“Absolutely,” I answered as I helped him up the steps to the MUNI train.
After an incredibly good meal at a nearby restaurant, it was time to tell Mark and Carolyn and their kids goodbye. “Have you ever read John Adams by David McCullough?” Carolyn asked as we walked back towards the hotel.

“I haven’t. Is it good?” I smiled to myself. We always randomly recommended books to each other—some things never change.

“It’s excellent, in fact, I have a copy in the car that I just finished.”

The goodbyes distracted me, and Pedro looked tired, so we made our way to our hotel room without ever picking up the conversation about the book. Five minutes later, the hotel room phone rang and I rushed to answer it. Maybe it was the hospital with news that they’d harvested enough stem cells and that Pedro could go home.

“Anita?” Carolyn’s voice disappointed me, but made me happy at the same time. “I’m in the lobby and I have that John Adams book for you.”

“Be right down!” I ran down the stairs for one last hug goodbye and some reading material.

“Here’s the book,” Carolyn handed me a worn copy and gave me a hug. “Make sure you start reading it right away!”

“I will,” I assured her, “I’m getting tired of magazines.” I went back upstairs and settled into a comfortable chair to read and wait for the phone to ring with the stem-cell count.

The book fell open on my lap as I gazed out the window, wishing for escape from my worries—would Pedro ever have enough stem cells? Would the endless bills and expenses ever get paid off? It might be convenient for the hospital to have Pedro as an outpatient, but our bank account sure took a hit. I struggled with my fears, and decided that I could do nothing, other than give my fears to my Father. I whispered a prayer, than looked down, ready to start reading.

The book had fallen open because there was a fat bookmark pushing the pages apart. A green and white bookmark consisting of several hundred dollars. No doubt about it—God heard the silent cry of my heart before I even uttered it, and he provided with a refreshing visit from a dear friend and money to help us out.

***

It wasn’t until nearly four years later that I stopped at Carolyn’s house again. We dove back into our friendship and our conversation as if we’d seen each other last week.

“Did I ever tell you about Pedro’s tree?” Carolyn questioned.

“No. Pedro has a tree?”

“He helped Mark plant it right before he was diagnosed with cancer.” She pointed to a tall, healthy tree in their back yard.

“It’s beautiful!” I exclaimed.

“It almost didn’t make it. It struggled and struggled the whole time Pedro was sick. We tried everything, but nothing seemed to work. Finally, I started going out there every day and praying for Pedro. That’s why we call it Pedro’s tree.”

Tears filled my eyes. Who would have known that a monument to a miracle thrived in my friend’s back yard.

Communities come in all shapes and sizes—distance and time make no difference to a community of prayer warriors who leave books and pray under trees.

Join us each week as we explore the art of story.

I STILL HATE PICKLES

Dancing With Elvis and Scaring Ivy

I failed to take photos of UCSF's robots, Waldo, Lisa Marie and Elvis, but they looked similar to this one from Boston's Children's Hospital (Photo credit: Justin Ide/Harvard University News Office)

I failed to take photos of UCSF’s robots, Waldo, Lisa Marie and Elvis, but they looked similar to this one from Boston’s Children’s Hospital (Photo credit: Justin Ide/Harvard University News Office)

I met Ivy the week Pedro’s hospital room started to heat up like an oven in the late summer sun. Finally, we couldn’t stand it any more, and I went to a mom and pop general store down the street and purchased some duct tape and purloined blankets from the linen closet. Pedro approved of my plan, and my blanket-taping antics served as a diversion. Hospital life can be boring. Unfortunately, Ivy caught me red-handed—balanced on the windowsill, struggling to get the tape to stick to both the wall and the blanket.

“Mrs. Ojeda,” she exclaimed, “be careful.” She glanced around the room, took a deep breath and fanned herself, then continued, “Here, let me help you.”

I tightrope walked on the window ledge and Ivy kept the blankets under control until I’d successfully taped them in place.

She nonchalantly turned to Pedro and said, “Here are your meds, Mr. Ojeda,” and proceeded to take his vital signs.I felt guilty about involving a nurse in defacing hospital property—I’d lived in dormitories and knew all about the rules for hanging things on walls and using duct tape on windows.
As she left, Ivy turned and said, “It feels better in here already!”

Yes, Ivy was a brick. She was one of the sweetest, most even-tempered nurses on Eleven Long—always conscientious, always polite, always wearing ivy-colored scrubs.

Earlier that month, when Laura and Sarah came to visit (one of those visits because-it-might-be-the-last-time-you-see-him-because-he’s-in-ICU), Ivy took the time to play with them. Ok, not your typical lets-play-with-little-kids type of play, after all, Laura and Sarah, at 10 and 8, were too old for that. No, Ivy saw them wandering forlornly down the hallway and invited them to dance with Elvis.

UCSF is a high-tech hospital, complete with elevator-riding robots from the pharmacy named Elvis, Lisa Marie and Waldo. When Ivy saw the girls gazing in wonder as Elvis glided down the hallway, she asked them, “Who wants to open Elvis?”

“Is Elvis that thing?” Sarah asked, having never seen a robot (nor having much knowledge Elvis). (more…)

How YOU Can be a Secret Millionaire

Carol discovers the Secret Millionaire.

You can be a secret millionaire by showing that you care for someone who is going through a rough time.

I was laid up for a while, under doctor’s orders to not do anything physical. My iPad and I threw a party. I watched Netflix movies and read books on my Kindle app. Then one day I found the ABC app and a show called The Secret Millionaire 

My life goals have always been pretty clear-cut—being monetarily well-off has not been at the top of my list—which explains my choice to be a teacher. My main goal and focus, handed down through my parents’ example, is to serve others.

Ah, but The Secret Millionaire caught me and drew me in as I watched episode after episode. A millionaire would spend a week in a needy area of the United States. While posing as a person making documentaries, the millionaire secretly decided how much of their own money to hand people and/or organizations who were trying to make a difference in that area.

Suddenly, I really wanted to be a millionaire! What sheer joy it must bring to have the ability to just present someone with a giant check? To see a need and say, “Here, I want to help you with that!”

Then came the episode with Anne Beiler, founder of Auntie Anne’s, Inc. I’ve never had Auntie Anne’s soft pretzels, but apparently they are well-liked as she has built a successful company.

Anne went to Baltimore for her sojourn. One of the places she visited was the Casey Cares Foundation. This organization works to enrich the lives of critically ill children and their families. Suddenly, I wasn’t watching with envy as someone with lots of wealth donated money to people with whom I did not share a connection.

Now it was personal.  (more…)