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saiblln · 7 years

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Story of Sai: A Two-Time Cancer Survivor

By Marisse Lee

Sai Belloan, a young lady aged 21, is one of those souls I happened to meet by serendipity in the virtual world of Facebook. A twist of fate, I would like to call it that way.

If you check out her FB profile she would strike you as just another normal young woman who likes Game of Thrones and, most likely, has a crush on Kit Harington (lol, now, who wouldn’t anyway?); dogs; Justin Bieber (oh go and love yourself); Friends(again, who wouldn’t?); and must have, once recently, fall madly in love with K-Drama(Korean drama TV series) and the Ken-doll like Korean actors. Pretty much like everyone in her age in this country, I bet.

She is blessed with a lovely face and a lovely family. She is the youngest of two siblings borne from a family who earns their living from manufacturing shoes and bags. She was, therefore, living a normal and comfortable life until this huge challenge came along in her life at the age of 15.

She was afflicted with Hodgkin’s Lymphoma. The Mayo clinic described it as: “a cancer of the lymphatic system, which is part of your immune system. In Hodgkin’s lymphoma, cells in the lymphatic system grow abnormally and may spread beyond the lymphatic system. As Hodgkin’s lymphoma progresses, it compromises your body’s ability to fight infection.” Its symptoms include fever, night sweats and weight loss and oftentimes, the presence of a non-painful enlarged lymph nodes in the neck, under the arm or in the groin area. Feeling tired and itchiness may be felt by those affected with this type.

In Sai’s case, the symptoms consisted of itchy skin, persistent dry cough for 3 months (the phlegm was laced with blood in the latter stage), fatigue and a lump in her neck that was biopsied (via sample taken thru needle-aspiration) but with negative result. However, after surgery and another biopsy, the lump turned out as positive. She went through a treatment consisting of 4 cycles of chemotheraphy. Note that HL type of cancer has a high survival rate especially in the case of young patients. She recovered and was cancer-free for the next 4 years. She graduated valedictorian from high school and went to University of Sto. Tomas to study BS Finance. She was enjoying a carefree life like any teenager…but, BOOM! Just like that, cancer re-appeared.

Everyone had, one time or another, a brush with pain and sorrow. We all learn to deal with it, let go and then move on. However, nothing will ever prepare for anyone to have another tryst with the same demon. That would be devastating to say the least. You already looked this devil in its eyes. You weathered the storm…and yet, it is back. Staring you in the face.

Initially, Sai worried that she might undergo stem-cell-transplant, a treatment that is being touted as highly effective in treating cancer cases (I have different un-expert opinion on this matter but it is irrelevant to discuss it here so let us save that for another day) but it is quite expensive in the Philippines (approximately $50,000 or more). Fortunately (financially speaking), her doctors put her under the first-line-of-defense treatment which means she had to undergo 6 cycles of chemotheraphy to get rid of the cancer cells.

A trip to the hospital for each cycle which is equivalent to 2 sessions is a “trip to hell”according to Sai. She was in constant pain. What with being poked by needles so many times to insert the IV-line…when a battered vein refused to take in the meds, they will simply poke another one to go on with the treatment. I will never understand how a 21-year old was able to handle all that. But she did. After each session, she would hurt from the side effects of chemotherapy: bone/muscle/body pains, shortness of breath and soreness of veins. Alongside with that, she had suffered “moon face” (steroids side effect), uncontrolled eating and insomnia. But, thanks to God, she is, again, in remission – free from cancer once more.

Now, why the heck am I writing this story? Well, people, cancer is not just like having a flu, recovering from it, then going back to your routine. NOT AT ALL. Sai was in college when her HL cancer recurred. She was building her dreams…looking forward to finishing school because she remembered how happy and proud her parents were when her older sister graduated from the university. She wanted to make them proud of her also. A typical dream of a child who dreamed of somehow paying back their folks’ sacrifices. She hoped to get ahead in life as that is what we were raised to do. One has to make a place under the sun. Cancer provided her a choice-less choice but to quit school.

She is cured, yes…still, she lives life with Damocles sword over her head afraid that the cancer may recur a third time. She is scared of having dreams for herself again because one day she might wake up losing them once more. She worried about her parents because they are getting old and she would not like to see them earning and putting up money for her treatment. She posted a long recount of her cancer tale on 22 July 2017 putting up a brave face against this odd…what she did not tell you much about is that she lives everyday like someone near a cliff…anxious, frightened to fall in that abyss.

Cancer changes a person. It makes you brave because you have no other recourse but to embrace courage. It makes you treasure life more because you have tasted what it is to almost lose it. It makes you cherish the people in your life because you are not sure how long is your time to share and spend with them. Nonetheless, at the same time, you always live with fear…less for yourself but more for the people you love and might leave behind. It is a harrowing tale that will continue to unfold every day of her life. It will take a very long while for her body to completely recover and regain back its maximum health…it will probably take double that time for Sai to be completely confident that things will be really okay.

She is thankful for the friendships she gained (strangers and otherwise) while she has been going through this challenge. Misery loves company, true. It may be “misery” but, from there, compassion and love bloom that only show our humanity in the face of adversity.

Right now, she is taking her time to recover. She would have wanted to go back to school right away to avoid the additional two years (thus, additional expenses) she may incur as a result of the implementation of K-12 Program in the Philippines. However, I tried to reason out with her that there are more important things other than college education…and that, at this time, priority should be given to her health; it, being given back to her for yet another chance. I love to mention here that Sai learned watercolor drawing by herself from the YouTube University (pun intended) while she was sick. When I asked her the other day what is she keeping herself busy with, she said: “Painting my bedroom.” Oh, the kid must be doing a Michelangelo on her ceiling, who knows?

She also continue to share stories of her friends that are still battling with cancer and seeking financial assistance in the hope that by sharing their posts she might be able to help find a charitable soul who may be willing to extend help. She established a Facebook group for HL and non-HL cancer patients which you can find through this link https://m.facebook.com/groups/1465490123521821.

Lastly, Sai never lost her faith that God is there for her and her family.

My goal in writing her story is not to educate you about cancer. Google can provide you with tons of information if you would like to read about it…neither am I seeking pity and consolation from you although understanding and compassion is very much welcome. If you are reading this, I am knocking at the door of love and kindness that reside in your heart, please hear my prayers:

1) I am begging you to show support to people who are suffering from cancer by sharing their stories especially those who are in need of financial assistance…that is the least we can do. By doing such, perhaps our efforts might lead to someone who has the means to help. It is shooting in the dark, yes, but who knows an arrow might find its way to the right heart.

2) If the cancer-patient is selling items to raise the money required for their treatment, we can either patronize his/her product or, again, help in the selling campaign (I do not have to remind you, though, to check authenticity of any such campaign before diving into it…Heaven knows how the Internet works these days).

3) If you have the financial means, kindly donate to their Go-Fund-Me

4) If none at all, sincere prayers will do. Humans are beings made of energy. Prayers are energy. You get the picture.

Having said that, please start with Ramon Christopher “Casi” Ramos Burgos. He is Sai’s friend…another soul suffering from non-HL cancer that she happened to befriend in the cancer community. Originally, we intended to write a story for Casi but he has been confined in the hospital and not available to provide details that we need. By sharing Sai’s story, you will be sharing Casi’s battle with cancer as well. If you are able, please check his Go-Fund-Me at https://www.gofundme.com/2ce3sqdw. Your financial help, whatever the amount, will be most appreciated.

Or, if you are interested in ordering cancer-awareness t-shirts, you can check this link to place your order https://www.facebook.com/iamcasimon/posts/1592362204139378.

PLEASE, I BEG YOU…share Sai’s story (and by that, sharing Casi’s plea) or kindly re-post Casi’s Go-Fund-Me link or help him raise the US$50,000 (it only has $500 so far, a loooooong way to go) by promoting the sale of his t-shirts. A simple click, a simple share is all we are asking from you. Maybe somehow, somewhere it would get result.

#hodgkins lymphoma #non hodgkins lymphoma #lymphoma #survivor #cancer #cancersurvivor #gofundme

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blankasolun · 4 years

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source: Metal Hammer 7th May 2020

How Dave Mustaine Took on Cancer and Won

By James Blaine (Metal Hammer) 21 hours ago

Megadeth mainman Dave Mustaine opens up exclusively about staring down cancer and what the future holds

The whole world is coming apart at the seams.

At least that’s the way it seems in Nashville, Tennessee this week. A T6 tornado tore the hell out of town just as the coronavirus hit the Volunteer State. Even President Trump is in Music City today, surveying the damage from Marine Helicopter One, hovering above us as we step into a dark, downtown studio to meet with local resident, Dave Mustaine.

The Apocalypse’s first and second horsemen take a back seat, at least for the moment. Right now, we’re more concerned about Dave’s dog. Oblivious to its diminutive size, the long-haired Chihuahua descends upon us like some high-pitched Hound of Hell, menacingly baring his teeth and threatening to devour our very soul if we step any closer to his master.

“Easy, Romeo. Easy,” Dave says, reaching to save us from the snarling beast. We coil back, cautiously offering the back of our hand. Dave laughs gruffly. “Oh, no,” he says. “That doesn’t work with him.”

As the Megadeth frontman corrals his pup, it gives us a chance to check out the legend after his recent health crisis. Mass of fiery mane – intact. Black jacket, jeans, black t-shirt, white sneakers. Honestly? Well, he looks like Dave Mustaine, like the hellraiser still not sold on cheap or easy peace. He moves a bit slow, but not creakily – more like a man who’s fought the Devil bare-fisted and lived to tell the tale.

With the hound at bay, he turns to greet us. It’s difficult to know what’s appropriate in this season of paranoia and mutant pandemic, especially for a man who’s just had his immune system nuked. Do we fist bump? Nod and touch elbows? “Nah, I ain’t worried, man,” Dave assures us, shaking hands with a vice grip. “I’m healthy now.”

The backstory: March 2019. After being bounced from doctor to doctor, Dave gets an official diagnosis that sounds like some dystopian speed metal verse. Squamous cell carcinoma on the base of your tongue.

Hold up. Cancer? Mustaine? No way.

If anyone seemed indestructible, it was Dave Mustaine. Bad ass, bad attitude, snarling, spitting, raging, red-headed, black belt-carrying soldier in God’s Army, Godfather Of Thrash. That cancer could sink its claws into someone like Dave sent shockwaves through the metal community. Now, one year after the diagnosis, Metal Hammer comes to Music City to hear his testimony first-hand. Because Dave Mustaine kicked cancer’s ass.

“Yeah, I’m pretty stoked about that,” he says, grinning as he grabs a bottle of water and motions for us to have a seat in a private, black- walled dressing room. The obvious first question: So, how do you feel? “I’m a little run down, but a lot of that’s from the medication and all the stuff that goes along with treatment. They hit the cancer really hard, nine doses of chemo and 51 radiation treatments, which just beats the hell out of you. My mouth is still messed up but overall, I feel really good.”

Dave settles in on the couch to tell us how he got the news that he was cancer-free. “I was here in Nashville, at my doctor’s office. He had to reach down the back of my throat, which was really unpleasant, but it was important for him to feel and make sure. And he said my progress was amazing, that both sides felt the same. I’ve got a metal plate in my neck that I figured might cause problems, but the doc told me, “Dave, you are in perfect health, 100%. You’re free to go.”

Dave pauses to slide a piece of Big Red gum into his mouth, twisting the foil between his fingers, reflecting before he continues. “It sounds bizarre, but I kind of knew. I took good care of myself. I’d done everything my doctors told me to do. I had tons of support from family and friends. And I had lots of prayer. I don’t want to sound arrogant, but I expected it. I had faith that I was going to be healed.”

At this point, Dave rewinds to early 2019, explaining how he received the grim verdict. While out shredding with Joe Satriani and Zakk Wylde on the Experience Hendrix tour, severe mouth pain struck. “I’d gone in to get some dental work,” he says. “And after, it felt like the dentist had broken a piece of scraper off in my gums. I went back and he sent me to an oral surgeon who checked me out and said, ‘You need to see an ear, nose and throat doctor. I don’t want to say anything bad, but it looks like the Big C.’ Well, fuck, dude! Why’d you say that, then?”

Dave shakes his head, still pissed, taking a long pull of water. “Anyway, I figured I’d take care of myself once the Hendrix tour was over. While out on the road, a friend of mine knew an ENT at the local emergency room. He came over, took a look, and said it wasn’t anything to worry about. But I knew something was wrong with me. It was just too far down for anybody to see.

“We had a day off and I was home in Nashville, so I saw a local specialist who suggested a scope. I don’t do good with scopes, so they had to knock me out to get the tube in. But yeah, they confirmed that it was cancer in the side of my throat that had spread to two lymph nodes.

“Initially, they wanted to send me to MD Anderson in Houston for 11 weeks and I said no. fucking. way. I’m not gonna be away from my family for that long. So, they set me up at Vanderbilt, with Dr. Cmelak, who’s actually one of the best radiation oncologists in the country. I had a good team.”

Fortunately for Mustaine, Music City is also the healthcare capital of the United States. The band cancelled tour dates and put the brakes on a new record so Dave could begin a brutal treatment regime, resting at his farm in the rolling hills of nearby Franklin between blasts of radiation and IV chemo drips. The worst, he says, is over.

“I’ll have to do another MRI soon and check in with the doctor regularly, three years, five years. But the cool thing is, my voice came back even better than before. I think the treatment shrunk whatever was on my vocal cord that was making it hard to sing. I’d seen pictures of my voice box and there was some kind of bubble on the flap that was giving me trouble. Cyst, tumour, nodule, whatever the fuck it was. But that’s gone now, and they say long as I don’t do anything stupid, I should be good for the rest of my career. I know once you get cancer you’re never really out of the woods, but if the process doesn’t scare you into changing your lifestyle, then shame on you.”

Dave is no stranger to injuries and pain. He suffered career-threatening nerve damage to his left arm during a 2002 stint in a Texas rehab, and a decade later, underwent emergency surgery for spinal stenosis – whiplash, if you will – resulting in titanium implants in his neck. Flashing his trademark maniacal smile, Dave insists he felt no fear in the face of death.

“I already died once,” he says, referencing his 1993 overdose on Valium. “I don’t remember anything, though. No light or tunnel or any of that shit. I respect death but I’m not living my life in fear. There was a little when I first found out that I had cancer, but it wasn’t so much about dying, as not being able to use my gift anymore, to play guitar or sing. That really shook me. To be inconvenienced is one thing. It’s something else to lose your gift.”

Dave leans in. His steely glare, coupled with the white beard and wild hair, gives him the appearance of some Old Testament prophet of doom. “When they told me that my arm was 80% and I would never play guitar again, I thought, ‘You have no idea who you’re talking to. I will absolutely play again, and it’ll be a matter of days, not weeks.’ There’s a couple things I still can’t do, but I feel like I can play almost as good as I used to. Going through that thing with my arm was helpful. It gave me the courage to face any kind of medical problem I might have down the road. I’m going to do everything they say and if there’s blood, I can handle it. I’ve seen my own blood before.”

We ask about the darkest days, if his reputation causes people to expect an unrealistic level of strength. Dave fidgets with his shoelace. Ruffles the pup sweetly. Reaches for another piece of gum before the reply.

“I think people do expect me to be invincible. It is a lot of pressure,” he admits. “But when you come out on the other side victorious, they cheer even louder. I like being a man of the people. That might sound corny, but it’s true. The hardest part was having to let others take care of me. I’ve always been so independent that even if I do need help, I’m not going to let anyone know. But overall, chemo wasn’t as ugly for me as it is for a lot of people. I had a couple of days where I got really sick and threw up, but that was it. I tried to be upbeat. When I would go in for treatment, I’d talk with the other patients, try to be encouraging.”

The thrash titan was forced to miss the band’s inaugural MegaCruise in October, with his daughter, Electra, stepping in to represent the family. Upon completion of treatment, Dave was able to return for the Killing Road tour with Five Finger Death Punch in January. While on stage at the SSE Arena in Wembley, he announced that the cancer was in complete remission.

“Actually, I think I mentioned it from the first show of the tour,” says Dave. “If not Helsinki, then Stockholm for sure. I wanted the fans to know that I’m OK and how great the crew has been. And for sure, I want to tell the truth and let everyone know how much I prayed through this whole ordeal. Not just like, ‘Oh, yeah, thanks, God.’ But that I really, seriously prayed.”

Christian for nearly two decades, Dave has always been vocal about his beliefs. While discussing the role faith played in his recovery, he pauses, raking fingers through his beard, measuring his words.

“After growing up as a Jehovah’s Witness, there was a time that I hated the concept of anything that I had to answer to. The church disfellowshipped my sister, Debbie, and I was the only one who would sit and listen to her cry. It flipped me out and all I wanted to do was get back at the people who hurt my sister,” Dave explains. “But now, I try to keep my prayers pretty gentle. I don’t pray for anyone to get hurt or get what’s coming to them, only for God’s will and that he would help me do what I need to do. To me, prayer is just an open, honest, easy conversation like you’re talking to your dad. Essentially, that’s what God is supposed to be, our Father, right? So that makes it easy for me to engage in prayer.”

Asked to elaborate, Dave adds, “In the Bible, the Pharisees liked to pray in public so everybody could see them. They thought the louder they prayed, the more pious they would seem, like it’s an indication of their righteousness. For me, righteousness is something that’s exhibited through consistent behaviour that’s Godly in nature. You sum up the gospels with the Golden Rule. Helping others, no matter what. There’s this old song by the Circle Jerks called Wonderful.”

He sings the chorus of the 80s punk classic. Romeo perks up, cocking an ear in his master’s direction. “It’s a great song that talks about how it’s really not so hard to do something nice for someone else. Help a stranger. Smile. If you see a homeless person, give them something to eat. I was homeless once. It was the worst, man. Scrounging for food, living in [bassist] David Ellefson’s van…”

Dave apologises for losing his train of thought, blaming the lingering effects of “chemo brain”. After a break, he switches gears, discussing the positive changes that have come from his battle with the disease. “My wife and I are getting along tremendously, and things are really good with my son and daughter right now, too. I’ve got a better relationship with my band. The other day, Kiko [Loureiro, guitarist] says to me, ‘I really like this new Dave!’ What he was talking about, is when you’re dealing with pain, you drink, you smoke, you bitch, because you don’t know what’s going on. But soon as I found out what was wrong with me, I attacked it. Once I did, I could feel myself getting happier too.

Support also came from outside Dave’s immediate circle. His old band brother, James Hetfield, reached out, as did Kiss’s Paul Stanley and Ozzy, who was at war with his own medical demons in 2019.

“Everybody’s treatment is different, but Bruce Dickinson had been through throat cancer about five years ago, so he was able to give me a lot of insight into what to expect. His biggest advice was to listen to the doctors and don’t rush to get back onstage. They told him to hold off, but he went back out to perform and nothing came out. Well, OK. I get it. Bruce waited a month before his first show, so I held off a little longer. My last treatment was in September and I made plenty of time to rest, exercise and eat right before we went back out on tour. We did 22 dates overseas, and I feel great now, except for the fatigue. But I think a lot of that might be due to um, extracurricular activities. Staying up late. Not sleeping. Maybe a little, you know…”

Thumb and forefinger to his lips, Dave inhales sharply, making the universal symbol for partaking of the herb. Could he be referring to the alleged medicinal benefits of CBD oil? “Don’t screw around with the oil, man,” he growls in the same gravel baritone as his crushing thrash classics. Our eyes go wide as the voice from sixth grade Headbangers Ball comes to life.

Dave cackles at our reaction, pushing back a wayward strand of hair. “If you’re gonna do it, get the good stuff. I think the world is just now finding out the beauty of cannabis and everything it can do for you. I hear people talk how it’s good for cancer patients. C’mon, it’s good for any fucking patient! The radiation zapped my salivary glands so I couldn’t make spit, which made it really hard to swallow and get food down. They gave me this crazy mouthwash to use that had Benadryl and lidocaine in it, but I still couldn’t eat. So cannabis helped with that, except I got a terrible craving for kiddie cereal. I went to the store and got, like, 20 boxes.”

The thought of the Tornado Of Souls singer devouring countless bowls of cereal is a pretty cool picture and we can’t help but inquire about his favourite fix. “Trix with marshmallows. Froot Loops with marshmallows. Frosted Flakes. The kind with little marshmallows. You get the idea. My cancer team told me to try and watch the sugar intake, but they said, ‘Dave, if you can eat – then eat.’ The doctor threatened to put a feeding tube in my gut if I lost too much weight. Well, they scared the shit out of me with that one, but it worked.”

With Dave healthy and back onstage, the follow-up to 2016’s Grammy Award-winning Dystopia is on every Megafan’s brain. Late last year, Dave teased songs that were “heavy as hell” with titles such as Rattlehead, Part Two and The Dogs Of Chernobyl.

“I don’t know if any of those titles are still holding up,” he says, revealing that the band has been tracking at Nashville’s Sound Kitchen with co-producer Chris Rakestraw at the controls again. “Whenever I make a record, the names of the songs change so many times. I think we’ve got 14 songs for this album and another folder with six. The songs are constantly evolving and as they do, we change the title to be more reflective of what makes the song distinct.”

So, will we see a new Megadeth album before 2020 ends? “I hope so, yeah,” says Dave. “We’ll start back in a couple of days and keep plowing until it’s done. Metal Tour Of The Year starts this summer, but that should be fun and easy [Editor’s note – we spoke to Dave before COVID-19 outbreak]. We’ve got a week’s vacation coming up soon and I’m going to go rest up and get ready to come back and make a brilliant record.”

Nashville traffic is anarchy these days and Romeo looks like he needs to hike his leg. As the sun sets over the Cumberland River, Dave stands and slides an arm around our shoulder, recruiting Metal Hammer to thank the fans for all their thoughts and prayers. It strikes us, how we expect legends to be carved from granite. On one hand, we understand that our heroes are human. But on the other, we never want to see them frail, or sick, or down. And that must be a hell of a burden sometimes. But perhaps, it’s also what keeps them moving. If our heroes can keep pushing, then that gives us the courage to keep pushing too, through all the shitstorms of life, disasters both natural and manufactured, even the ones we bring upon ourselves. Decades later, they still inspire perseverance, hope, and the determination to never let the bastards grind you down. Maybe even a little 21st century metal up your ass.

Still, we have to ask one last thing. Dave’s been on the road almost 40 years. Dues paid; the mark has been made. Was he ever tempted to call it a day, sit back on the farm and enjoy a slow, simple life?

“Yeah, I guess I could do that,” he admits, shrugging like it’s no big deal. “But I love what I do, and I like helping the band and crew make money. Playing music makes people happy. A lot of times while we’re out there, they share stuff with us, some good, some bad, but we get to bring our own little brand of panacea to people and somehow, that makes them feel beautiful. Even if it’s for just one night.”

Published in Metal Hammer #334

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Dave Mustaine Talks About His Fight With Cancer source: Metal Hammer 7th May 2020 How Dave Mustaine Took on Cancer and Won By James Blaine…

#bruce dickinson #chris rakestraw #dave mustaine #david ellefson #dystopia #james hetfield #joe satriani #kiko loureiro #kiss #megadeth #ozzy osbourne #paul stanley #sound kitchen #tornado of souls #zakk wylde

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n0spit-blog · 7 years

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Ch. 11: Atelectasis

Have you ever been in a car accident?

After the initial violence of deployed airbags and twisted metal, after the dust has settled, the world drifts back into focus. A wave of adrenaline washes over you. You take stock of yourself: your head, your limbs, your racing heart. Is everything still there? Is there any blood? Are you ok?

Living with a metastatic cancer diagnosis is like perpetually existing in that moment.

The middle lobe of my right lung has collapsed. It's a condition called atelectasis. The tumor that occludes the middle lobe bronchus, the one I call "The Big One", it's been there long enough that it has kept that portion of my lung from inflating. So I imagine that part of my lung as a shriveled piece of cellophane -useless and crackling when jostled by outside forces. It doesn't hurt. I am not breathless. I can still do yard work. I can still hike. I can still spin Kiddo around in our backyard, or carry him over the rocks and into Lake Huron. It takes three flights of stairs before I am short of breath. Even so, I find myself doing the same gut check that you do after any close call multiple times in a day. Is everything still there? Is there any blood? Am I ok? My blood work is near perfect. My weight is stable. My lungs are clear. I still have my hair and I’m tan from all the time I’ve been spending outdoors. To look at me, you’d never know that there was anything wrong.

But I don’t really know if I am ok or not. I won’t know until the next scan.

My most recent set of scans revealed that, while most of the cancerous lymph nodes in my lungs remained stable, one of them grew. A lot. It doubled in size. At our last meeting, I asked Frank, my oncologist, whether or not growth of one lymph node constitutes disease progression. My proper and brilliant oncologist shrugged his narrow shoulders. Frank said: “Progression is usually more frank than this.” Progression is the scary word for us cancer patients. Disease progression means that the cancer is continuing to grow despite treatment. Disease progression of more than twenty percent means that I am no longer welcome in the clinical trial that provides my medication for free. So far, the growth of one solitary lymph node does not equal twenty percent, so I am allowed to keep going into my seventh cycle of Ibrance.

I am trying to prepare myself just in case the next scans reveal that the cancer is growing. I feel ok, but I am tired. I lay down for naps often, but I never sleep. Instead, I plot. I research. Frank and his sidekick Mary Beth have told me that I will never again be cancer free, regardless of whether or not this treatment works. Facing that, it’s hard to find hope. I don’t want to accept it. My gut tells me not to. In fact, my gut tells me to fight like hell. Do not rest. Do not get complacent. But I need more than a gut feeling. I’m an ex-paralegal and a former English major; I need something that I can write up an MLA citation for and take to court. So I look for some good news to hold onto. The outlook is pretty grim for a patient like me: a rare disease that has no known treatment, lung function painlessly compromised, iffy scan results, a doctor's promise of eventual demise. You know, the usual stuff. In my darkened bedroom, while I should be sleeping, I comb the depths of the internet for evidence that my survival is possible. The spark of hope is there inside me, but it needs fuel. So I endlessly search for something to feed it. Admittedly, I don't find much. But I keep going all the same.

I go to work. I walk in the woods with my dog. I clap for Kiddo when he uses the potty. I snuggle with Husband while we watch Game of Thrones. Life goes on, but every so often, the memory that I have this disease surges through me like an electric shock. It’s a gut punch. One minute, I’m watching my child stomp through the living room in my old, worn out New Balance sneakers, and my internal monologue is an innocuous refrain of cute cute cute cute cute. The next moment, I remember that I may die before kindergarten starts and I think about how strange it is that I could be gone, but my shoes will still be here. Immediately there is an urge to throw away all the shoes but one pair, clean out the closet and live out of a suitcase until the end. On the final drive to the hospital, Husband and I will stop and hurl the suitcase off a bridge, Big Lebowski style. It seems cruel for Kiddo to see Mama's shoes on the floor of the living room, like I've just arrived home from work, if I am never coming back.

According to Frank, though, having only one cancerous lymph node grow larger is just plain confusing. If cancer is going to grow, it usually just grows – all of it, not just some of it. Plus, these lymph nodes may be still trying to work. Lymph nodes are part of the immune system. When you are fighting off an infection, they swell. My son had a cold when I had my scan. Maybe the lymph node was swollen because my immune system was trying to fight off Kiddo’s cold? That’s the hope anyway. Frank tried to reassure me. “It’s not as if [the cancer] is blossoming,” he said. Blossoming. Like tulips in my spring garden. Except we were talking about the cancerous tumors in my lungs.

If the next set of scans shows that the cancer has grown more than twenty percent, I will have to change my treatment plan. If I had a more common cancer like breast cancer or colon cancer, there would be ribbons and awareness months and options. But for me and my rare, unstudied, underfunded parotid cancer, there's only cisplatin, an IV chemo drug from 1978 that causes kidney damage, endless vomiting and baldness. If I accept treatment with cisplatin, I fear that my current quality of life (and my hair) would disappear, never to return. Given that, I again endlessly search for other options. Frank doesn’t want to give up on Ibrance, even if the cancer grows despite it. He went as far as petitioning my medical insurer to cover it, even though the FDA hasn’t approved it to treat my cancer. This is good news, but it comes with a caveat, like most “good” news in the cancer-verse. The caveat is that my prescription drug plan doesn’t cover 100% of the cost for meds and Ibrance costs $10,500 per month. Even if insurance covers 80% of the cost, that’s still $2,100 coming out of my pocket. Spoiler alert: school's out, so Husband isn't working, my hours are reduced on account of my cancer treatment-related fatigue. Also, we don’t have an extra $2,100. So, figuring out how to afford the drug that allows cancer to grow while making me sort of sick and extra sleepy would be another hurdle to overcome.

I think I can follow Frank’s thought process. Ibrance is a CDK 4/6 inhibitor. My cancer has shown that it likes the CDK 4/6. Ibrance is supposed to keep the stuff that the cancer needs to grow away from it, so that it doesn’t grow. But, if keeping the CDK 4/6 away isn’t helping us accomplish the goal of overall disease stability, then maybe adding another drug to the plan would. I get it. But which drug do we add? Won’t adding an IV chemo drug make me sicker? And if so, what’s the benefit, if Frank and Mary Beth do not think that I will ever reach remission? These are the questions I’m wrestling with currently. This is the equation that I am trying to solve all those afternoons in my darkened room when sleep will not come. I will not give up. But I’m afraid that my situation is not as easy as following the doctor’s orders either.

So now we wonder and we wait. I am ok. I have a hard time reconciling the idea that I feel this ok if there is cancer running rampant through my body. But what will the next scan tell us?

We try to cram as much life we can into the time that we have. I won’t deny that I sobbed the other day because it was gorgeous outside and Kiddo wanted to go to the park and I did not feel up to taking him. But I took some narcotics, watched a YouTube video and off we went, dog and Husband in tow.

I am still looking for some hope. I haven't found much so far, but I keep going all the same.

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