FL here we come!

Dear Jesus, you are so good to me.

Re-reading some of my recent blog-posts, I noticed how much I mentioned pain. I’m typically not like that, but looking back now on the past couple of months, I can see just how much pain—not just physically, but emotionally and spiritually—I was in. Physical pain blooming from within my heart, my lungs, reaching more and more for pain medications than I like to even admit. Emotional pain: hearing terrible scan news, being encouraged to have power of attorney and end-of-life conversations. A new tent of sorrow hung between Josh and I, seemingly invisible but always there, connecting us in new ways that can’t even be spoken about (or maybe, we thought if we spoke, the tent between us would just collapse, with what little shelter we had to protect our hurts and hearts we desperately wanted to keep it there.) Thank God for His mercies and comforts He gives on this earth. Great friends from my church who come over with a single, last minute evening text to listen, laugh and cry with you. Doctors who are truthful and compassionate, taking time to listen and explain the best ways they can. Medicines that heal and massages that take away aches and acupuncture needles that create constellations of alleviated pressure points.

We had some good news come to us during the midst of chemo week last week. I got accepted into a clinical trial in Florida! I am very excited about this since I have been waiting for the trial for months to come to Columbus, but it keeps getting pushed back because of legal reasons. How ridiculous! People are waiting eagerly for this drug, myself included! So I told Nick a couple weeks ago to put me on the wait list for the Florida study, and about 10 days later I hear that I’ve been accepted. So much for all the months of waiting! The clinical trial  is specifically for relapsed Ewing’s Sarcoma patients. This is very exciting news! I have never had the opportunity to be part of trial that is specifically for relapsed Ewing’s Sarcoma patients, so this could be huge.

So many of you have donated or shared my GoFundMe for travel expenses. Thank you so much for your generous support of Josh and I! We will be heading to Florida early May and hope to stay for bit to vacation some. We definitely need it!

Please be praying for us for safe travels there and back, and for connecting with the doctors and care team there in Florida. It is so important and vital to have a good connection with the doctor, to literally trust your life and health to their opinions and decisions. If there is no respect mutually or no warmth and concern, that’s a bad sign! I’ve definitely learned that over the years just how valuable the patient-doctor relationship can be. I’m so grateful for all of the amazing and loyal ones I have had who God has used to keep me here over the years. Definitely wouldn’t be here without their wisdom and actions!

I’m currently at the hospital now as I type this. I returned here on Wednesday because of a fever. Anytime I get a fever, I have to come in (typically to the ER because of the timing) in order to make sure I don’t have an infection. Now, over the years I’ve had many, many fevers but I have never actually had an infection. Of course, this one time that I just dreaded checking to see if I have a fever, dreaded making the call to my doctor, I actually have an infection, technically 2 different types of bacteria trying to grow in me. That Wednesday morning I just woke up dizzy, and thought it was potentially a migraine coming on. And then I started sweating, and now here we are, on hooked up to an IV poll with fluids constantly running, various antibiotics flowing and steroids streaming within me. I’m supposed to be here until Monday at least :/ Pray that I don’t go crazy here! Or that something happens that makes me stay even longer. I feel pretty good actually, so hopefully I can get some writing in and use this time productively instead of watching the Food Network haha.

Please pray for a quick recovery and for a healthy body to start off this clinical trial right. Pray for peace and wisdom as I go through all the legal paperwork/will things. It can be a bit overwhelming to just take time to think about and process. It’s been a slow one, but I have great help and even Greater Hope to turn to.

Thanks always for reading!

hospital hibernation.

A couple weeks ago, I spent more time at the hospital than my own home; I spent 5 days and 4 nights there. And I hate hearing whenever I have to be admitted to the hospital, but looking back I am grateful that I did and went there when I did.

It’s funny because earlier that Monday, I was at the hospital and every nurse just praised how great I looked, how healthy, how good, basically, how normal. And I felt exactly how they spoke: normal, healthy, happy. But as the day went on, a pain crescendo-ed. Pain drummed into my right shoulder, consistent beat, pain’s rod striking my bones every moment and sharper and closer to the last. Monday evening, it was at its worst, and I asked a dear friend to massage it for me. She massaged it for quite some time, at least 30 minutes, but the relief from it lasted no more than 3 minutes. Pain interrupted my sleep, and I reached more frequently for my prescription pain medicine than I normally do. I am someone who prefers balms, salves, heating pads, hot showers, massages, acupuncture—anything homeopathic compared to medicine. So for me to take the medicine meant I was really in pain, and that nothing was working, including the medicine. Tuesday the pain became worse and now was reaching my chest forcing me to sit on the couch with a heating pad on the majority of the day, once again reaching for that prescription pain medicine, which seemed to still not be working. Wednesday I wake up with pain as my alarm, and I feel like I’m going to either pass out or throw up as I move about the house. Now I can’t take this. Three days of pain is much too much, and so I call my nurse navigator asking if there is any open spots in the clinic for a doctor to see me. Prayerfully, there is one.

Once I’m wheeled into my room, its vitals time and of course, surprise surprise, I have a fever. Having a fever means more tests for me, seeing if I have an infection in my PIC line and investigating what else could be the source of this fever. I don’t even care that I have one, even though it is quite high. All I want is to be freed of pain. Waiting for the doctor to see me and prescribe some IV pain medication, I literally am moaning from the pain, the torture of waiting. This moaning is not just for today’s pain but also for yesterday and the day before that; this is the climax of my injury. I can’t help it, this instinctual cry that comes from within me, my own melody responding to the pain’s drumming thunderous beat. I don’t want to moan, because I find it kind of embarrassing and that I should keep myself together, but I can’t any more. The pain has unlocked me and my civilities.

After being tended to by nurses and my doctors and finally experiencing some relief from IV pain medication, it’s decided that I need to spend some time overnight at the hospital. I’m so miserable that I don’t even care. In fact, I almost just want to stay so I can get this pain to calm down completely. More tests are done throughout the next couple of days, trying to figure out the source and cause of this unbearable pain. On Friday, there is finally an answer as to what has been going inside my body to create storms of pain within my chest, a downpour that seems to never to ceasing: pericarditis. The sac that your hearts in, the pericardium, its own little heart-couch, had become inflamed, the cardiologist-oncologist explained to me. Finally, just knowing the source of the pain is an immediate comfort, knowing that you’re alright and that you’re going to be ok. Naming pain has some sort of new power, new control over it that you once did not have over the nebulous power that was presiding over you, weakening  you because you had no idea what to do to even begin to try to fight it and all of your weapons you went to were broken in trying to fight it.

My new weapons: high doses of ibuprofen around the clock, increased medicinal pain patch, and another prescription for my pain medication. Since I’ve left the hospital, this trio seems to be working. Some days I wake up and the pain is back, or late in the evening it’s slow steady beat returns, an unusual lullaby before bedtime. The more annoying and frustrating side effect though is my shortness of breath. During my 5 day stay, I was on oxygen for most of the time, the chest pain making it difficult to breath. Some mornings, like today, I have energy to move about freely within the house. Other days, I’m panting just trying to head to the bathroom, which is literally the room right next to our bedroom.

Sigh. The body. I can’t control it as much as I want to. The only way to control it is to rest, rest, rest, more resting that I was doing before this five day hospital hibernation. Which is frustrating and discouraging because up until that point, I finally felt like I had been experiencing good energy and better discernment when it came to resting and going out, even staying out later than I would have normally been able to do. So with me panting now going to the next room over…it just feels like I’ve regressed so much in such a little about of time. Like, how much more can a body rest? I’m trying to listen, I really am. And I guess there is progress since I haven’t been as frustrated with myself when I don’t complete all of the activities I was hoping to accomplish that day. That is life-giving and energy-saving. Discouragement drains.

Thankfully, I did have enough energy to attend our new young adult home-group that Josh and I have been going to. This week we studied a brief survey of Jesus’ miracles and their purpose to affirm his claims as the Messiah Savior. I almost just sat there and cried as we read passage after passage of the various healing miracles, from freedom of fevers to freedom from death. The climax (and the truest moment of holding back tears of realization)—

matthew 8

16 When evening came, many who were demon-possessed were brought to him, and he drove out the spirits with a word and healed all the sick.17 This was to fulfill what was spoken through the prophet Isaiah:

“He took up our infirmities
    and bore our diseases.”

Jesus takes on our sicknesses and carries them for us.

In my moments of hospital over-nighters and chemo-driven days, this truth can many a times feel so far away. But with my Bible in my lap, hearing it read aloud that moment in homechurch, it couldn’t have hit home any closer. Because I realized that whether I remember this truth or not, all day, every day, Jesus has been doing this for me for the past 14 years. Man, I would not be here if he hadn’t all those years ago! He is always there, withholding more pain that I probably even know and halting cancer cell growth more than scans can show. This verse promises his very, very nearness to us, hugging us physically and spiritually with its compassion and comfort, the promise that he is more than just there with us but taking on and enduring it all for us too.

On the surface, it may not look like the traditional “miracle” since I’m still undergoing treatment after all of this time. My cancer hasn’t completely disappeared like the Peter’s mother-in-law’s fever; it is still here within my lungs and my bones. But it’s a miracle that I am still here, even with a rare cancer, stage 4 diagnosis pronounced upon me 14 years ago. You can’t argue that one. The statistics argue for my miracle.

He has taken upon my cancer.

He has bore it in so many more ways that I won’t know until eternity.

That is joy-giving, life-giving.

That is grace.

scan update.

It’s a strange feeling when you feel so healthy, so alive, so normal but then you’re given x-ray vision as you skim the scans of your body and see what is really going on.

My body is complicated and complex. Yesterday, Dr. Nick went over the CT scans of my lungs, at the same time comparing them to past scans. Some cancerous nodules have gotten smaller, but not by much. And one nodule has definitely grown, you can see it be a bit larger than the others.

Honestly, I don’t know how they can tell what is what on those black and white scans. In my vision, to me the air in my lungs is the black night sky, and the nodules are like tiny little white stars scattered throughout, making unknown and undefined constellations within me. And the blood vessels that also show up white look like shooting stars; make a wish. I  wish on them for good health. I wish even harder that the cancer will go away.

Although my scans weren’t the best of news, I’m used to receiving this kind of news. Is that bad or sad that I’m “used to” this? But really, I am so used to so many things within the cancer world. I think I sometimes shock people with the ease and casualness that I speak about treatment, radiation and procedures. But this is just my life. After 14 years of being on and off treatment, being a cancer patient is my normal more than not being a cancer patient. It’s just as normal for me to talk about cancer as it is for you to talk about your job. Because in a way, fighting cancer is my job. I write cancer, I fight cancer.

Upcoming next in my battle is a biopsy. I’m actually getting this procedure done on Thursday, Valentine’s Day. This biopsy isn’t being done to diagnose but instead to get my tumor DNA tested and see all of the gene sequencing and gene expressions. (I hope I am saying all of this correctly; I never was well-versed in the sciences as I am the humanities.) We are hoping to get this in-depth cellular information to make better and more informed decisions regarding future clinical trials and treatments. The latest in cancer treatment is immunotherapy. These immunotherapy clinical trials are typically targeting a specific gene, so knowing if I do or don’t have that gene will be a great asset in decision making on treatments. Please pray that this DNA testing will be beneficial to my family and I and for a good, quick recovery! I’m always shocked at how painful a biopsy can be post surgery. Even though they are taking a small sample of the tumor, they are still removing something that is attached to me, even though I think of cancer in my mind as this separate entity within me. So please pray for the pain to quiet quickly!

I have been thinking more about pain recently. Before this period of good energy, I was experiencing significant pain again in my chest, my neck and shoulders, and a short, sharp pain behind the knee. All over just felt this achingness that stayed as loyal as my shadow. As I was experiencing this period of pain, my reading just so happened to align and give me insight. I’ve been reading off and on the past year really Rose From Brier, a collection of letters by early 20th century missionary Amy Carmichael. My dear friend Hannah gave this book to me as she had heard that it was a book Amy wrote from one ill person to another ill person. As someone who experienced much physical pain herself, she reflects:

“What if every stroke of pain, or hour of weariness, or loneliness, or any other trial of flesh and spirit, could carry us a pulse-beat nearer to some other life, some life for which the ministry of prayer is needed—would it not be worthwhile to suffer? Ten thousand times yes. And surely it must be so, for the further we are drawn into the fellowship of Calvary [the cross] with our dear Lord, the tenderer we are toward others, the closer alongside do our spirits lie with them that are in bonds; as being ourselves also in the body. God never wastes His children’s pain.”

p. 128 of Rose From Brier

God never wastes His children’s pain.

Doesn’t your heart just stop but also soar at the same time in hearing this? The spirit of God within me affirms this, that God does see and care about my pain. He more than just notices; He knows and He Himself experienced more pain on the cross than I could ever bear. He never forgets that I have cancer, that I have limp, that pain seems to bloom for a moment within me, a destructively beautiful flower blooming within me, it’s petals of glass cutting and tearing into me as its unfolding. I imagine there are still more seeds of these flowers waiting to sprout and scorn me.

But, God never wastes His children’s pain. One day in the future, when my soul flies to Him, He will comfort me as I hurriedly run into His arms. He will explain the whys that aren’t necessary to always know in this lifetime. Even though there is pain, He is still good.

He is still—always and forever, past and preset—immensely good.


I am still in the long process of transforming my blog into a book. If you would like to hear a recent update, check out my Kickstarter. Thanks again to all who have donated! Your support—financial, thoughts, prayers—means everything! This upcoming week I am participating in a writer’s workshop through your donations. I am very excited about this and hope it helps propel even more momentum for me in the editing and writing process. Thanks all for your encouragement to take this next step of faith to craft a book!

bright.

hello all.

It’s sunny, bright, cold and crisp today. It is the perfect January winter day in Ohio.

A week out from my chemotherapy transfusion, and I feel refreshed. The winter sun is energizing and at the same time calming, grounding me and fueling me. Its brightness is such an encouragement against the bleakness I usually feel.

I truly believe God has heard everyone’s prayers this past week for me. I honestly can’t believe how good I truly feel, just normal so quickly. I am not complaining, and I hope it lasts! I want to ride this energy as long as I can. Sustain me Lord to do your work! Keep me in this perfect peace, this relaxed and content state.

My pain has lessened. Looking back on the past few weeks, I should have experienced a sore and swollen throat, a side effect from radiation. I had been so worried about it, since the last time I had radiation to my neck, my throat was burned so badly from the inside out. These past few weeks though, I only noticed a tight constriction of pain whenever I yawned. I tried to hydrate with water and green tea to keep the inflammation down. Praise God for such little pain! What a relief!

My neck and shoulders also have been improving. I no longer feel this ache-y stiffness all the time, and my electric heated shoulder pad proves its usefulness daily. To begin to feel some freedom from such an intense pain for over a year now is a miracle! I cannot begin to express how much this impacts my mood, my mindset, my perspective, my quality of life. Thank you Jesus!

I hope this report brings brightness to your day, joy, and a clear reminder that God hears our pleas and listens to us in our time of need.

back to treatment.

Last night, pain became my alarm clock again. I had been freed of pain’s interruptions for a little over a week, being treatment-free for 11 days. I also was no longer waking up around 4:30a/5:00a with Josh as he prepared for the police academy. I hadn’t even thought about that when he graduated that I too would now be getting more sleep, a bonus blessing! During my 11 day break, I was sleeping better, eating more and having an appetite once again, having more energy to go and do the things I love on my own, with no one needing to drive me. I’ve felt almost normal again, and then the pain comes again, a signal throughout my body that it needs more treatment again, and its cue is right on time.

It amazes me how much my body does communicate to me, be it through pain or feelings. Over the past year, I’ve tried to look at my cancer care even more holistically. Diet has always interested me, but for the most part when I read “what to eat for when you have cancer or to prevent cancer” books and pamphlets, I find that I’m already eating the things they recommend. (So what does that say about me? haha) This past year, I added acupuncture and meditation to quiet the pain and my mind. As needles have been placed on me, I’ve felt currents between the needles, mapping out constellations and images of good health for me. I listen to a meditation before I sleep, hoping I will focus on my breath instead of the pain I’m feeling or shift my focus from the anxiety of what I feel like I must do tomorrow. Through adding  both acupuncture and meditation, I sense I can “read” my body more and therefore know what it needs. I’ve always had a sense or feeling come over me when I’m about to hear of bad news from scans. I can tell the difference between fatigue from treatment working from the fatigue that growing cancer cells cast on to me. And there are times when I can’t read the Morse code of pain-strikes within my chest. Is this pain from cancer birth and growth or from cancer cells dying within me? (Isn’t it interesting how both birth and death bring their own types of pain?)

So, tomorrow I go back for chemotherapy.  Today, I’ve been preparing my body with my pre-medications. And, when I think about it, I’ve been preparing my mind/soul also. I’ve been doing things around the house now so that later in the week I won’t look around and be overwhelmed. I already made some soup ahead of time so I have a go-to meal to eat, because cooking on treatment is just overwhelming. I’ve been talking to God more and reading more and listening to Bible teachings while my mind is clear like a summer night sky, able to think, reflect and meditate on the Word with much more ease. I constantly need to guard my heart with gratitude fences that surround and keep me at peace within my heart and mind.

I don’t want to admit it, but taking chemotherapy and steroids and medications that all come with it just transform me into a different person. I try really hard not to let that Jenna-version exist and to jump-start the return of me with little joys that I know I love: walking and petting my dog Wylie, going to coffee shops, rummaging books, prayer-journaling. But sometimes it is really hard to bring me back. Sometimes I wonder if I’ll ever come back or am I cursed under chemo’s spell. The spell’s curses include feelings of defeat, physical tiredness, insomnia, lack of appetite, lack of joy. It’s hard to be the damsel in distress and also feel like I have to be my own knight in shining armor to defeat the disease and the negatives of the chemo-not-yet-cure.

So please pray for me. Pray for strength, patience, and joy. Pray for gratitude and promptings to express that to my parents, husband and friends who always are quick to help me.

happy new year!

happy new year!

I hope the new year so far as treated you kindly with fresh perspectives, warm surprises, and warm blessings. In my household, the new year has already been eventful: Josh graduated his police academy training and ceremony after ceremony has been celebrated, appreciated and endured. Josh gave me the honor of pinning on his badge, and I held its weight in gold and silver, in awe of all that Josh has persevered to get to this moment. My family and I couldn’t be more proud of him!

In the midst of all the celebrating, I was undergoing and finishing up my last few rounds of radiation. I was recommended to have 10 sessions of radiation to my C5 cervical spine (the area around the back of your neck.) I at first panicked because it was radiation to my C7 cervical spine a couple of years ago resulted in intense shoulder and neck pain for months. It has improved for sure, but still when any medical professional touches my neck, their hands immediately fly into the air as if my shoulders were a hot kettle that burned them. They are always just in shock of how hard my neck and shoulders are; you honestly don’t have to be a medical professional to tell this fact. Today, I still combat this pain with a pain management trio of massage, acupuncture, and medication.

So I write to you now with the 10th radiation treatment completed. It’s tradition to ring the bell after completion of treatment, but this was like my 4th time completing a radiation regiment. Isn’t that bell supposed to signify that I am completely done with radiation, that I will never have to return back here again? In my case, I’ve returned several times. It would almost feel like I’m lying if I rang that bell. It’s not that I’m not hopeful about my health, but when you look back and remember the other 3 bell ringings its hard not to feel conflicted about this bell for me. I don’t want to stain the bell’s brass for other hopeful cancer patients with my unfortunate multiple trips back here.

Now, I thankfully have a little over a week break from all treatment. My body definitely needs a break from radiation and chemotherapy and multiple-day trips to the hospital. Since I’ve had radiation to my neck before, I’m anxiously trying to prepare against the side effects that come afterwards. I follow a yoga YouTube instructor for neck stretches, hoping to prevent pain and the moments providing stress relief as well. I almost always put a neck/shoulder heating pad while I watch tv or read. I massage a salve onto my neck every night before sleeping, praying that I don’t wake up in the middle of the night to have to take any pain medication. I’m trying to be more hydrated in hopes that I can keep my throat and esophagus moist, to relieve any burns that might have occurred on the inside of my throat, drenching the radiation fire with water, Propel, tea, coffee, anything.

I will update again sooner rather than later my friends. Thank you always for reading my updates and faithfully praying for me and asking how I am doing. He is good!