As seen in a Forest Service bathroom last weekend. “For the greatest good” is like saying “be best.” Whose greatest good????
Something has changed. Something is always changing.
I woke up at 1am in the most excruciating pain I’ve been in since my diagnosis 16 months ago. How can that be possible? Answer: I’ve been masking the pain, and it’s been getting worse.
This is your song for this post, and yes I just watched Project Hail Mary. This song is my vibe today.
How did this happen?
It’s all related to the week in January when I felt like my spine was crumbling. My delayed pain upon standing had been getting worse over the previous month, and I had started to feel a “pulling” sensation in the left back side of my skull. As you may remember, a neck MRI and many doctors appointments later, my care team resolved that there was no surgical intervention needed. Yes, my spine is compressed in a few places, but it was a stable compression, not impinging on my spinal cord. I learned I was feeling a logical kind of pain, not a damaging sort.
I went to see a doctor at High Desert Sport and Spine, a clinic that specializes in non-surgical interventions, and we decided to try a nerve block in one of my compressed vertebrae to see if it would stop the delayed pain upon standing, which by this point had become a debilitating throbbing in my head and shoulders which lasted a full 10 seconds, 10 seconds after standing. The referring feeling of a pulling at the back of my skull, which I later recognized as a spasm, was a secondary pain, and an additional layer of the dreaded “p” word was caused by the constant bracing my neck and shoulders were doing to protect me. My body would brace for the throbbing before I stood up, while I stood up, and after I was already up. My neck and shoulders are almost constantly inflamed by this involuntary action, and I’ve been taking anti-inflammatories around the clock since then.
Luckily, the ibuprofen stops the neck and shoulder soreness and the skull spasms. This makes sense if the spasm is caused by an inflamed nerve in my neck; the anti-inflammatory reduces the swelling, which reduces (or eliminates) the spasm for the duration of the med’s effectiveness.
Nothing helps the delayed pain.
So, it wasn’t until the end of March that I was able to schedule the nerve block, and I had been coping just fine by taking mass quantities of ibuprofen over the previous months. But, the day came and the nerve block didn’t do anything.
I had put a lot of hope into that block.
I had rested my hopes and dreams on that block.
I could take all the meds because I was getting the block, it would fix everything.
I was even on the plane ride back home from helping my mom recover from a shoulder surgery when I watched a movie about a climber in Yosemite, and I felt so good that I knew I would thru-hike again. It was definitely possible! Two hours later, when the ibuprofen wore off: no way. There is no way I can hike again.
The truth of what I had been blocking revealed that my “feel good” hours were an illusion. I was not better.
Ok, so the nerve block didn’t work. I have another appointment with the doctor today to see if there is anything else we can try, but in the meantime, the pain has been getting unbearable. How do I know? I had an appointment with my primary care doctor for my annual physical, and my blood test came back with high potassium levels. It was very easy to determine what was causing that…the handfuls of ibuprofen I was taking each day. Unfortunately, high potassium can lead to kidney damage, which can be very bad, so my primary care doc told me to ramp up the gabapentin (nerve pain medication) and decrease my ibuprofen use and to get my labs drawn in another week to see the difference (that’s today). Well shit.
The problem with gabapentin is the slow increase of dosage that you need to take to get up to full power. My ramping up of the drug would take weeks, meanwhile the reduction in vitamin I (yes, we thru-hikers refer to ibuprofen as a vitamin because we often take it daily) would have to start immediately.
I spent some serious time in the pain cave this week, and it soon became clear to me that things were much worse than in January. The pulling feeling is a sharp icepick stab to the head. The neck and shoulder throbbing is debilitating, and all combined together: I can no longer function without constant pain medication. Oh, and oxy doesn’t work on nerve pain, so that’s not even worth taking.
Last night I woke up for my nightly pee and was easily in the most pain I’ve been in since the cancer diagnosis. I was hit by a mack truck. My skull was on fire on the inside and out. I was a 7.5 on the scale of 1-10 on the pain scale.
This is a now pain. My kidneys are a not now pain. I took the #&%^#& ibuprofen.
Where do we go from here? I have no idea, but I meet with the High Desert Sport and Spine doc later today, my oncologist and neck surgeon next week, and I am also getting an EEG test done for a neurologist appointment. I hope one of them can find something actionable to do because this isn’t sustainable. I can not live this way.
I was thinking I’d wait until I had a next step before writing all of this out. I don’t mean to scare anyone, but since this blog is for me, as a chronicle of what I’m going through, I’m choosing to publish this post when I’m crabby. When I’m exhausted, and my eyes are so tired they feel like sandpaper. I’m writing like I’m at the end of my wits, because that’s what I am.
None of this will ever be over. You don’t get to say “I’m all better now” with stage 4 cancer.
It won’t be over until I’m over, so this is just another chapter.
I finally had an appointment with my oncologist to go over all the great test results from the weeks before, but when I described the increasing pain I had been experiencing for months now (8-10 seconds after I stand up, a throbbing pain pulses through my lower skull and shoulders and lasts 5-10 seconds….often I have to close my eyes and grimace to get through it), she discounted my working theory that it had something to do with low blood pressure.
Frowning at my description, she said, “Lets order a cervical spine MRI to see if something else is going on.” I was relieved that she took the pain seriously and wanted to help me figure out what was going on.
I don’t have cancer right now, but something is going on that doesn’t seem right.
I had gone to yoga that morning, modifying greatly as I do lately, but after meeting with her, decided that I would minimize extraneous movements in my neck for now. The MRI was scheduled for Friday morning, and I had my surgeon follow up on Tuesday. I was going to get some answers.
Wednesday, January 14
I walked to my acupuncture appointment in the balmy 50-degree weather that had been plaguing Central Oregon this June-uary. Kym found my neck to be incredibly tight, but my shoulders were the most relaxed she had encountered during the year I had been visiting her. Hmmm, strange, I thought.
I reiterated my complaint of throbbing pain in the lower half of my skull and shoulders when I stood up, the same thing I told my oncologist on Monday, and that a neck MRI had been ordered. While I was resting with her needles tapped into my muscles and meridians, Kym consulted a physical therapist in her office and came back with the suggestion to tuck my chin into my chest when standing up, using only my legs. I practiced the movement and was delighted to feel less pain upon standing. The theory was that something in my neck was getting pinched when I was standing up, causing the pain. I walked home, and every time I stood up the rest of the day tucked my chin into my chest.
Ok, so what was causing the pinching?
Thursday, January 15
I was up in the wee morning hours again. This time it wasn’t the steroids that woke me up like last year during my chemo treatments; this time I was worried about my neck. I woke up and couldn’t get my sore neck off my mind. I had additionally started to feel a “pulling” on the back left side of my skull. It felt like things were progressing.
I kept replaying that week’s appointments and pain in my head in an infinite loop when I finally decided to get out of bed. I put on an episode of Poledark, a show both my mom and I had been watching on Netflix.
One particular scene and line stood out, and I rewound the episode enough times to write it all down:
You can not fight all the world. You can only make your own small corner a fairer place.
We are living in such a tumultuous time, I was living in such a tumultuous body, that I found real solace in that passage.
We can only do what we can do in our small corner of the world.
It’s easy to throw up our hands in despair when we see things on a world scale. That shared story has been true always and everywhere. It really doesn’t matter if it is the 1790s mining communities of Cornwall, or today in the streets of Minneapolis. We have to do what we can do in our corners. I was happily ruminating on that line and its implications when suddenly the potential of my situation hit me like a ton of bricks.
My body was trying to tell me something and I hadn’t been listening. It’s time to put my neck brace back on.
My brain had been playing doctor’s appointments over and over in my head, I kept focusing on my pain and the really tight and sore neck, not seeing the trees for the forest. I even had the audacity to tell a few people that I didn’t trust my body anymore…it didn’t know acceptable pain from damaging pain. I didn’t have cancer so why is my neck pain increasing?
Duh!
My neck pain was increasing because something was wrong in my neck.
My neck muscles were sore from trying to stabilize the bowling ball that was my head.
The pulling feeling in my skull had to be related from my body trying to stablize itself.
I had started to move my body instead of my head when looking to cross the street.
I had ordered a $90 “Level 5” CBD pain ointment for my neck and shoulders.
When I let my brain catch up to what my body had been telling me the last month, and I admitted to myself that something was very wrong in my neck, I was devastated.
I heard Kirk’s 4am alarm go off, and went into the bedroom sobbing so hard that he jumped from the bed in alarm. I pointed to the closet and was finally able to eke out the words “I need to wear my brace again, it’s in the closet.”
Something was wrong.
I was convinced my condition could be an emergency, so I messaged my surgeon to give him a heads up on my symptoms and to prepare him for the MRI coming in the morning. I also mentioned we had planned to drive to the coast for a friend’s birthday weekend, but I could cancel the trip if my neck was too vulnerable.
I didn’t hear back from the doctor that day, but the neck brace and pain meds were helping tremendously. I felt safer. The muscles that had been working overtime were able to relax, and I took my pills without wondering if I should.
My concerns were legitimate.
Friday, January 16
Thank goodness my MRI was at 6:55am. I didn’t have to wait long, and once I was in the machine surrounded by the clicking and buzzing, I almost relaxed.
Something was being done.
I expressed my sense of urgency to the MRI tech. Last time I felt this way I had been wisked away to the emergency room and surgery. She assured me if it was an emergency someone would get in touch.
I went home in a strange calm.
The My Chart results came in an hour later.
It sounded bad, real bad, and I couldn’t decipher most of it. Parts of my spine were mentioned that had never been mentioned before. “Severly compressed vertebral body fracture,” was a phrase I knew, but the severely part was new. A “mildly compressed vertebral body fracture” in a completely new part of the spine was recorded, my pain was likely due to a “degenerative marrow edema,” and other “scattered degenerative findings” told me one thing: my spine is crumbling.
I waited for a doctor’s call, but none came.
I slowly packed and prepared to head to the coast. During the drive I kept my phone close, but no call came. By 5pm on Friday night I decided I wouldn’t be getting a call, and I’d need to wait until my appointment with the surgeon on Tuesday afternoon.
The Weekend
I kept the pain meds on deck, and let myself experience the joy of fabulous company in a beautiful part of the world. Oh, and I ate a cheeto for the first time in a year! And a strawberry starburst! I wasn’t fighting cancer at the moment, so I let my guard down and ate some food because why not! My spine is collapsing!
The pain and throbbing continued, but as long as I wore my brace and took my pills, It was manageable and I was able to keep the demons at bay.
We walked on the beach, ordered pizza, put puzzles together, ate birthday cake, watched football, and walked on the beach some more. It was perfect.
On Monday morning I realized the “pulling” I had described at the back of my skull was really a spasm that was by this point, throbbing rhythmically at the back of my head. If I took pain meds the spasming stopped, so I kept on a steady regimine of drugs.
And this was it. This was the moment to put the “live now” blathering into action. If I was faced with a crumbling spine, which probably meant surgery, radiation, or some other combo of hospitals and extended bed rest, then I was going to have this day with the people I love and only focus on what was in front of me. That morning, it was a marionberry scone and delight at the jelly fish we found washed up on the beach. It was walking with the love of my life, my heart bursting with joy at spending the weekend with Brooke, Adryon, and Alex (Brooke’s brother).
I would die happy if today was my last day.
Tuesday, January 20
I was calm.
I woke, drank coffee, and made plans with Kirk to go to the surgeon’s appointment together later in the day. I slid into an easy morning.
I would have answers today. There was no reason to fear.
I had a phone interview with a woman working on a story about the Blue Mountains Trail, had a zoom with my creatives freelancing group, and heated up leftover curry for lunch while I watched more Poledark.
I started to get a little agitated when we got in the car to head to the hospital. I surveyed the clock to make sure we would get there on time…or early, I do like to be early. And by the time we walked into the waiting room my name was being called.
Yes!
Kirk and I sat waiting for the doctor to arrive and I surveyed the graphic of a spine on the wall. Ok, now my T3 was collapsing. The T3 supports upper body movement and respiratory function, and affects the lungs and upper chest.
Ok, got it.
The doctor came in, noted my c-collar, and I explained that I feel more comfortable with it on. I go over what I’ve been feeling, and he takes a big breath and explains that my spine looks stable in the imaging. I stammer, “But more vertebrae are collapsing, I feel like it’s crumbling.” He assured me I am not crumbling, and says again, “Everything looks stable, it looks really good in fact.” I look at Kirk in disbelief. “But, the pain?” Somehow, he doesn’t address the pain and the head and shoulder throbbing, and the skull spasms, other than to say nothing is wrong in the imaging.
It’s a short appointment. We walked out of there completely bewildered. “But!” I start again and again, “That doesn’t make sense!!”
I’m suddenly questioning everything.
Am I really feeling pain?
Is it all in my head?
But the My Chart results sounded so bad!
Even my oncologist said they looked bad, but she isn’t a spine specialist.
Am I making it up?
But what about the pain?
We drive in silence to Deschutes Brewery. I took off my neck brace. We walked in and ordered some food.
I’ll get a second opinion.
Maybe it’s not related to my spine.
Something must be wrong.
Maybe nothing is wrong?
But the pain? Is that real? I know it’s real!
I text my mom and some friends who were in the know. I hadn’t wanted to blog about my situation for this very scenario: maybe nothing was wrong. Maybe I was wrong.
This experience had been a week-long mindgame. I was convinced I was crumbling, then told I wasn’t crumbling.
What the %$##^$$#%!
Wednesday, January 21
Ok, maybe it isn’t my spine that is the problem
Google, what do you have to say about it?
I spent some time going through the MRI results, copying and pasting each finding into the search bar to decode the medicalese.
The plain truth of terms like “new sclerosis of the left C4 articular pillar” became much more innocuous when worded as “new hardening and increased density in the bone of the left C4 vertebra’s facet joint, usually a sign of osteoarthritis or wear-and-tear degeneration in the neck. It causes potential pain, stiffness, and reduced movement, and can be managed with conservative care like PT, anti-inflammatories, or sometimes injections.”
“Degenerative marrow edema,” became “fluid buildup in the bone marrow, often from degenerative joint diseases that causes pain, swelling, and restricted movement. It is treated with rest, anti-inflammatory drugs, physical therapy, and sometimes core decompression for severe cases, typically resolving over months.”
“Scattered degenerative findings in the cervical spine without thecal sac stenosis,” is “common, age-related wear and tear in your neck, but this wear is not compressing the main spinal canal where the spinal cord sits. This is a very common MRI finding, particularly in individuals over age 40, and often represents the normal aging process of the spine.”
Well shit.
Should I have googled all of this before letting my mind go hay-wire? Should My Chart results be shared without a doctor’s interpretation? Should I still get a second opinion?
I’ve been focusing on sleep for the past few days. Well, my focus is on getting more sleep – whether that is actually happening is debatable. My routine: At about 7 or 8pm I take my evening meds (some of which include sleep aids….much more on medication today, I’ve decided to go into a deep dive on the pills. What am I even taking??).
I put on my Husco wrist and ankle bands, my over-the-ear-headphones, plug them into my phone, and choose a sound/vibration sequence to fall asleep to. My options include (Wow, I had no idea there were this many until I typed them all out):
Stillness – Helps you quiet unwanted noise in your head
Relief – Aids inthe alleviation of pain and discomfort on a physical level
Ancestral – Awakens Ancestral memories held in your DNA
Integrate – Balances and harmonizes body, mind and spirit
Expand – Opens up the mind gate to higher consciousness and meditative states
Safety – Allows for comfort and release of fear
Calm – Deeply relaxes you so that you sleep soundly and wake up rested
Heal – Relaxes your energy centers and releases built-up anxiety
Serenity – Quiets the mind so that you remain completely awake and sharply aware
Regulate – Helps bring body systems back into balance after trauma, shock or stress
Vitality – Revitalizes what has been depleted in body mind or spirit
Peace – Creates calm in the midst of chaos and agitation
Ground – Brings you back into your body and anchors your energy to the earth
Tranquility – Soothes jangled nerves, transforming anger and frustration into inner stillness
Focus – Allows for easier access to problem-solving and synthesis of new material
Comfort – Gently washes away worry and soothes emotional grief states
Mystica – Reawakens magic and reconnects to primal memory
Release – Facilitates access to memories and resolution of deep-rooted issues
Harmonize – Synchronizes what is out of sync in body, mind or spirit
Clarity – Uncluttered the mind, quiets random thoughts and opens the door to inspiration
Free – Transcends feelings of entrapment and helplessness
Renew – Resources what is out of balance due to illness, stress or trauma
Oceana – Facilitates connection to life’s mystery and your fluid nature
Elevate – Frees your mind and spirit to soar
Opening – Increases mental perception and expands the body’s energy centers
Create – Stimulates and expands the creative flow
Rejuvenate – Stimulates the life force to enable cell repair and regeneration
Soothe – Reduces fear and anxious thoughts
Bliss – Opens the heart and mind to love and well-being
Awake – Brings body and mind back to a state of alertness
Transcend – Opens the mind to realities beyond the collective consciousness
Balance – Harmonizes yin (feminine) and yang (masculine) energies to create a sense of equilibrium
Nurture – Connects you to feelings of safety and warmth, generating a sense of support and well-being
Relax – Alleviates extreme stress and anxiety while deeply relaxing mind and body
It has become a ritual to get ready for bed this way:
I get all snug under the covers,
sometimes put my bed into zero-gravity mode (feet above head – I play with the sleep settings quite a bit, but I do like my legs elevated most nights),
take my neck brace off,
fluff a down pillow behind my head,
lay back,
put on the earphones,
Cover my eyes with a lavender-sented eye pillow that Carrie made for me years ago,
turn off the lights,
And pick one of the vibration experiences to start with. I usually choose a 30-minute sequence and often fall asleep before it finishes. Everyone once in a while I stay away through the full session and will pick another.
About two hours later my bladder wakes me up. I have a new pee-device that I can use when I wake up! This is a new addition to my cart this week. It fairs much better with my middle-of-the-night aim than the psytle did.
About this time I tend to hop on a device and scroll for a while (I know, I know…big that’s a big no-no for sleep interruption), then I’ll queue up a podcast or two, swap my over-the-ear headphones for some earbuds and sink back into the bed to have someone talk at me for the next hour or two. Often I’ll fall asleep, but sometimes I hang in there and listen to the episodes.
That might take me to midnight or 1am. After talking with one of my docs last week I decided to play with sleep meds this week. I’ve been deferring my 10mg of melatonin for a few hours, and instead of taking it at 7pm will take it one of the first few times I wake up. So far I haven’t noticed that helps much.
I know my meds are messing with my natural rhythms quite a bit, that’s why I want to do a deep dive into all of them tonight. But to be honest, I wasn’t sleeping well for MONTHS before my diagnosis. I was quite haggard, and my neck was a real problem.
Well, my ribs were too. Laying myself down and then sitting up last fall was a major chore. When I needed to set up I would roll over to my left shoulder and brace my arms on the wall (my bed was close enough to the wall that I could get some traction on it), I would brace my legs off the left side of the bed, and squeeze my abs enough so that I could evenly transfer the weight between my arms/shoulders, abs, and legs to lift myself to a sitting position. It didn’t always work out well and I might get a spasm out of the movements. Then I would scoot myself to the end of the bed to brace my legs again and hang onto the wall to stand up. I’m glad it’s not that much of a production anymore. The pain in my neck and back prevented me from getting good sleep pretty much up until my surgery in December.
And I haven’t even told you about my pillow fiascos! As you may remember, part of my thinking this past fall was that I was sleeping on my neck wrong, and perhaps everything could be solved if I could just find the right pillow to make things write. I started with a TEMPUR-Cloud Adjustable Pillow. It had removal filling so I could try and move the material around to find just the right scoop of the neck so that the meat of my head would rest a little lower than my neck…I spent alot of time looking into the placement of the neck and shoulders into alignment when I was sleeping. I am usually a side sleeper too (both sides please)! But with my intercostal injuries, I couldn’t lay on my left side; and on infrequent occasions, I would be able to find comfort sleeping on my right shoulder for a few hours before inevitably returning to my back position.
The problem with the Tempur pillow was that I was the one doing the adjusting and scooping out of filling. I had Kirk take a tape measure to my back to see if I could work on getting that alignment right, but I just didn’t trust that my efforts were working, and my neck still hurt, so I quickly abandoned that.
I had been seeing a Physical Therapist during this time, so I talked about pillow placement with them and ended up buying a version they sold at the clinic to try out. I figured they knew, right?
It ended up looking something like this:
I slept ok on it for a while, but by the middle of the night/morning, my shoulders would ache so bad that it would take hours of a heating pad in the morning to ease the pain so that I could feel an inkling of normality. And normality was in short supply this fall. I also think the bed we were sleeping on was too soft, and I was sinking into the mattress a bit too much, which was janking up my neck height too.
We needed a new bed for a long time before this, but putting an investment of a $5,000-$8,000 bed into the budget last fall just wasn’t going to happen. So I continued to suck it up and sleep poorly.
That’s about it for the pillow antics. Again, everything changed when I got to Louisiana and had surgery. My reasons for not sleeping now are less neck pain, than awareness and letting my brain turn on instead of keeping it dark and sluggish in the early morning hours. And maybe some pain.
Back to this week:
The big news is that I have started walking! Soooo, the next phase of cancer-independence has begun! I didn’t rush into it this week. Wednesday was the day, but I started like most of the others with my 6am med cycle. Kirk made me a coffee, and I putzed around on the computer for a while before deciding to get up. The only thing we had on our agenda that day was a 2:30 blood draw for my genetic testing (finally! I got the blood drawn, and will have another full biopsy next week).
Mid-morning I asked Kirk to get the walker out. His work buddy Greg gave us a walker to use along with a lot of other medical items that he had on hand for his Mom when she needed them. The walker was brand new, cherry red, and featured a platform where I could carry stuff or sit on should I get to the middle of the room and suddenly get tired.
Walking didn’t feel as weird as I might have thought; I lost count of the weeks I hadn’t been walking, but standing up next to those handlebars felt natural, and the steps came easily. I walked around the house and immediately started tidying things up. Ha, it’s hard not to!
I toured the house, inspected the fridge, and took a seat in the living room. Very satisfying. Using the walker is key because of its carrying capacity, but I did also take a few short walks without it. I’ll play around with movement for the rest of this week and my PT will come to the house next week and give me some proper exercises to work on.
So I didn’t really sew my walking oats until yesterday morning (or steam my oat milk).
I woke shortly after midnight and decided to get up. I loaded up my walker with a few books and headed out into the living room.
Tucked under one of my delicious new wool and cashmere blankets, I finished one of the books my friend Phyllis had loaned me.
Then I figured it was coffee time, so made my way to the kitchen to make myself an areopress. Mr. President had gifted us with a bunch of different types of dark roast, and my lovely friends Cookie Monster and Purple Rain sent me a big bag of the CDT blend of Triple Crown Coffee too.
I scooped some coffee into the areopress with a bit of decaf (seems like the right thing to do…. cut down a little bit on my caffeine intake), and put some oat milk into the frother.
Taking my latte back to my chair I felt that I was returning to a little bit of the life I once led prior to all of this. I’ve always been an early bird…really early. A typical morning last year BEFORE all the sickness would have me waking up at about 4am, I would make a cup of coffee and read/scroll until about 5:30 when I would either get ready for a 6am yoga class down the street at Namaspa, or get ready for a sunrise walk. I would do one or the other every day, and have for years.
6am yoga is about the best and only time I’ll make my way to the studio. The classes are small, the teachers are friendly familiar faces, and the baptist power flow at 90 degrees is just about the perfect way to wake up. I’ve been going to the 6am class 2-3 times a week since 2011. (I can be a creature of habit, and I credit my yoga habit with a lot of my general fitness.)
My sunrise walks have also been a source of great joy over the years. During the winter I would sometimes turn them into a sunrise ski, and often would meet my friend Marina at the Virgina Meissner snow park for a quick tour around the Tangent Loop. Other times I would head to Swampy snow park by myself and follow the blue diamonds into the woods with my headlamp until enough light would glow around me and I could fully immerse myself in the white world. My morning skis are one of the great joys of life. And they will be again, I know it!
Oh mornings, I love you.
This morning I got out of bed about 2am, went ahead and made myself a coffee, and finished one of my new Atlantic magazines.
So lets talk meds!
Here is my schedule:
4am
dexamethasone x 2 4mg tablets (steroid)
take with food (usually some nuts that I keep in the snack tray on my cart)
6am
levETIRAcetam x1 500 mg tablet (anti-seziure med)
gabapentin x1 300 mg capsule (nerve and bone paid med)
folic acid x1 mg tablet
ondansetron x1 8 mg tablet (anti-nausea, usually only days 4-8 after chemo as needed)
For days 0-3 after chemo I take a prochlorperazine x 10 mg tablet three times a day as a preventative nausea measure.
methadone x1 tablet (long-acting pain reliever)
Just last week I started methadone to replace the oxyCODONE I had been taking for months. I could take oxy anywhere from 2-8 hours apart depending on the pain levels I was feeling, but it was all over the place and now I feel much more even by taking methadone twice a day…it evens it all out, and I can always take an oxy for break-out pain as needed.
Methadone usually comes with a prescription to Naloxone which can quickly reverse an opioid overdose.
10am
Some kind of laxative like Miralax and/or smooth move tea
12pm
gabapentin x1 300 mg capsule (nerve and bone pain med)
ondansetron x1 8 mg tablet (anti-nausea, usually only days 4-8 after chemo as needed)
6pm
methadone x1 tablet (long-acting pain reliever)
7pm
gabapentin x1 300 mg capsule (nerve and bone pain med)
sennosides-docusate sodium x2 (laxative)
levETIRAcetam x1 500 mg tablet (anti-seziure med)
LORazepam x1 1 mg tablet
ondansetron x1 8 mg tablet (anti-nausea, usually only days 4-8 after chemo as needed)
middle of night
X1 10mg Melatonin or x1 mg Lorazepam (If I don’t take it at 7pm – or THC)
this is my new attempt at altering my sleep schedule this week, to take one of the above when I wake up the first or second time.
I set alarms for the above times and have a spreadsheet for each day and time so Kirk and I can check off that I actually took the med. Don’t worry, it’s color-coded.
Alright, lets learn more about these meds!
Lorazepam
What is it?
Lorazepam belongs to a class of medications called benzodiazepines. It is thought that benzodiazepines work by enhancing the activity of certain neurotransmitters in the brain.
Lorazepam is used in adults and children at least 12 years old to treat anxiety disorders.
Lorazepam is also used to treat insomnia caused by anxiety or temporary situational stress.
Lorazepam is sometimes used to treat nausea and vomiting from cancer treatment and to control agitation caused by alcohol withdrawal.
Warning:
Lorazepam can slow or stop your breathing, especially if you have recently used an opioid medication, alcohol, or other drugs that can slow your breathing. These effects can be fatal.
Things to avoid while taking this med:
Do not drink alcohol. Dangerous side effects or death could occur.
Avoid driving or hazardous activity until you know how lorazepam will affect you. Dizziness or drowsiness can cause falls, accidents, or severe injuries.
Common side effects:
dizziness
Sedation
drowsiness
weakness
feeling unsteady
Dexamethasone
What is it?
Dexamethasone is a corticosteroid that prevents the release of substances in the body that cause inflammation.
Dexamethasone is used to treat many different inflammatory conditions such as allergic disorders and skin conditions.
Warning:
You should not use dexamethasone if you have a fungal infection anywhere in your body.
Dexamethasone can weaken your immune system, making it easier for you to get an infection or worsening an infection you already have or have recently had.
All vaccines may not work as well while you are taking a steroid. Do not receive a “live” vaccine while you are taking this medicine.
There are many other diseases that can be affected by steroid use, and many other medicines that can interact with steroids.
Things to avoid while taking this med:
Avoid being near people who are sick or have infections.
Avoid drinking alcohol while you are taking dexamethasone.
Do not receive a “live” vaccine while using dexamethasone. The vaccine may not work as well during this time, and may not fully protect you from disease. Live vaccines include measles, mumps, rubella (MMR), polio, rotavirus, typhoid, yellow fever, varicella (chickenpox), and zoster (shingles).
Common side effects:
fluid retention (swelling in your hands or ankles);
increased appetite;
mood changes, trouble sleeping;
skin rash, bruising or discoloration;
acne, increased sweating, increased hair growth;
headache, dizziness;
nausea, vomiting, upset stomach;
changes in your menstrual periods; or
changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).
LevETIRAcetam
What is it?
It is used to treat seizures.
I had a few seizures after getting chemo the first time. Could be because of my brain tumors?
Warning:
Tell all of your health care providers that you take this medicine (levetiracetam tablets). This includes your doctors, nurses, pharmacists, and dentists.
Have blood work checked as you have been told by the doctor. Talk with the doctor.
Do not stop taking this medicine (levetiracetam tablets) all of a sudden without calling your doctor. You may have a greater risk of seizures. If you need to stop this drug, you will want to slowly stop it as ordered by your doctor.
A very bad reaction called angioedema has happened with this medicine (levetiracetam tablets). Sometimes, this may be life-threatening. Signs may include swelling of the hands, face, lips, eyes, tongue, or throat; trouble breathing; trouble swallowing; or unusual hoarseness. Get medical help right away if you have any of these signs.
Tell your doctor if you are pregnant, plan on getting pregnant, or are breast-feeding. You will need to talk about the benefits and risks to you and the baby.
This medicine may not work as well during pregnancy. Talk with the doctor.
Things to avoid while taking this med:
Avoid driving and doing other tasks or actions that call for you to be alert until you see how this medicine (levetiracetam tablets) affects you.
Talk with your doctor before you drink alcohol or use other drugs and natural products that slow your actions.
Common side effects:
Stomach pain or diarrhea.
Feeling dizzy, sleepy, tired, or weak.
Nose or throat irritation.
Trouble sleeping.
Headache.
Upset stomach or throwing up.
Not hungry.
Flu-like signs.
Gabapentin
What is it?
Gabapentin (Neurontin, Gralise, Horizant) is a medicine used to treat partial seizures, nerve pain from shingles and restless leg syndrome. It works on the chemical messengers in your brain and nerves. Gabapentin is from a group of medicines called anticonvulsants.
Neurontin (gabapentin) is used to treat pain you may have from shingles (postherpetic nerve pain). It is also used with other seizure medicines for partial onset seizures in patients 3 years and older.
Warning:
Gabapentin can cause life-threatening breathing problems, especially if you already have a breathing disorder or if you use other medicines that can make you drowsy or slow your breathing. Seek emergency medical attention if you have very slow breathing.
Some people have thoughts about suicide while taking seizure medicine. Stay alert to changes in your mood or symptoms. Tell your doctor right away if you have any sudden changes in mood or behavior, or thoughts about suicide.
Seizures may increase if you stop using gabapentin suddenly. Ask your doctor before stopping the medicine.
Do not stop using gabapentin suddenly, even if you feel fine.
Things to avoid while taking this med:
Avoid driving or hazardous activity until you know how gabapentin will affect you. Dizziness or drowsiness can cause falls, accidents, or severe injuries.
Common side effects:
fever, chills, sore throat, body aches, tiredness;
headache;
swelling of your legs and feet;
trouble speaking;
vision problems, dizziness, drowsiness;
tremors, problems with balance or muscle movement; or
nausea, vomiting.
Folic acid
What is it?
Folic acid (vitamin B9) is a B vitamin supplement that may be used to prevent and treat folate deficiency (low blood levels of folate) that can cause megaloblastic anemia. Folic acid may also be used to control high levels of homocysteine, prevent serious birth defects in pregnant women or women who think they may be pregnant, and prevent methotrexate-induced folate deficiency in people prescribed methotrexate.
Research is ongoing, but folic acid may have other benefits, such as reducing the risk of certain cancers, supporting mood and cognitive function, and possibly reducing the risk of dementia and the development of autism spectrum disorder (ASD).
Warning:
May increase the risk of seizures in some people with epilepsy receiving phenobarbital, primidone, or diphenylhydantoin.
Common side effects:
nausea
loss of appetite
bloating or gas
stomach pain
bitter or unpleasant taste in your mouth
confusion or trouble concentrating
sleep problems
mood changes, such as depression or excitement
impaired judgment.
Ondansetron
What is it?
Ondansetron blocks the actions of chemicals in the body that can trigger nausea and vomiting.
Ondansetron is used to prevent nausea and vomiting that may be caused by surgery, cancer chemotherapy, or radiation treatment.
Ondansetron may be used for purposes not listed in this medication guide.
Warning:
You should not use ondansetron if you are also using apomorphine (Apokyn).
You should not use ondansetron if you are allergic to it or to similar medicines such as dolasetron (Anzemet), granisetron (Kytril), or palonosetron (Aloxi).
Before taking ondansetron, tell your doctor if you have liver disease, or a personal or family history of Long QT syndrome.
Things to avoid while taking this med:
Ondansetron may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be alert.
Common side effects:
diarrhea or constipation;
headache;
drowsiness; or
tired feeling.
Prochlorperazine
What is it?
It is used to treat anxiety.
It is used to treat upset stomach and throwing up.
It is used to treat schizophrenia.
It may be given to you for other reasons. Talk with the doctor.
Warning:
Tell your doctor and pharmacist about all of your drugs (prescription or OTC, natural products, vitamins) and health problems. You must check to make sure that it is safe for you to take this medicine (prochlorperazine tablets) with all of your drugs and health problems. Do not start, stop, or change the dose of any drug without checking with your doctor.
Have blood work checked as you have been told by the doctor. Talk with the doctor.
This medicine may affect certain lab tests. Tell all of your health care providers and lab workers that you take this medicine (prochlorperazine tablets).
Dizziness, sleepiness, and feeling less stable may happen with this medicine (prochlorperazine tablets). These may lead to falling, which can cause broken bones or other health problems.
Call your doctor right away if you have signs of liver problems like dark urine, feeling tired, not hungry, upset stomach or stomach pain, light-colored stools, throwing up, or yellow skin or eyes.
This medicine may cause the results of some pregnancy tests to be wrong. Talk with the doctor.
Things to avoid while taking this med:
Avoid driving and doing other tasks or actions that call for you to be alert until you see how this medicine (prochlorperazine tablets) affects you.
To lower the chance of feeling dizzy or passing out, rise slowly if you have been sitting or lying down. Be careful going up and down stairs.
Low blood pressure has happened with drugs like this one. Sometimes, this has been deadly. Talk with the doctor.
Talk with your doctor before you drink alcohol or use other drugs and natural products that slow your actions.
Be careful in hot weather or while being active. Drink lots of fluids to stop fluid loss.
Low white blood cell counts have happened with drugs like this one. This may lead to a higher chance of infection. Rarely, infections have been deadly. Tell your doctor if you have ever had a low white blood cell count. Call your doctor right away if you have signs of infection like fever, chills, or sore throat.
Common side effects:
Dizziness.
Feeling nervous and excitable.
Constipation.
Dry mouth.
Feeling sleepy.
Methadone
What is it?
Methadone is a long-acting opioid medication that is used to reduce withdrawal symptoms in people addicted to heroin or other narcotic drugs, and it can also used as a pain reliever. Methadone is highly regulated medication (Schedule 2 Controlled Substances Act) and when used for OUD is only available through approved opioid treatment programs (OTP) that involves regular monitoring, counseling, and drug testing to make sure that patients are making progress in their recovery.
When methadone is used for pain it should only be used for pain that is severe enough to require daily, around-the-clock, long-term opioid treatment when no other treatment options have helped adequately. This medicine is not for use on an as-needed basis for pain.
Methadone works by activating the opioid receptors in the brain and nervous system, it is usually taken orally as a liquid or tablet.
Warning:
You should not use this medicine if you have severe asthma or breathing problems, or a blockage in your stomach or intestines.
MISUSE OF METHADONE CAN CAUSE ADDICTION, OVERDOSE, OR DEATH, especially in a child or other person using the medicine without a prescription. Keep the medication in a place where others cannot get to it.
Taking opioid medicine during pregnancy may cause life-threatening withdrawal symptoms in the newborn. See below for more information on using this medicine in pregnancy.
Fatal side effects can occur if you use opioid medicine with alcohol, or with other drugs that cause drowsiness or slow your breathing.
I had to take and EKG test before I was prescribed this med because Methadone may cause a life-threatening heart rhythm disorder.
Things to avoid while taking this med:
Do not drink alcohol. Dangerous side effects or death could occur.
Avoid driving or hazardous activity until you know how this medicine will affect you. Dizziness or drowsiness can cause falls, accidents, or severe injuries.
Grapefruit may interact with this medicine and cause side effects. Avoid consuming grapefruit products.
There are many dangerous drug interactions with methadone. Tell your prescribing doctor about all medications that you take.
Common side effects:
dizziness, drowsiness;
nausea, vomiting;
increased sweating; or
pain, redness, or swelling where the medicine was injected.
OxyCODONE
What is it?
Oxycodone is an opioid analgesic used to treat moderate to severe pain, it changes how you feel pain by blocking pain signals in your body. Oxycodone works by activating opioid receptors in the nervous system, as it is an opioid agonist. Oxycodone is a prescription medicine used for moderate to severe pain when other pain medicines when do not work well enough, or are not tolerated.
Oxycodone can be used as a single-ingredient pain reliever (Oxycontin, Roxicodone) and is also available in combination preparations with acetaminophen (Percocet).
Oxycodone is a controlled substance Schedule II, which means it has an accepted medical use but may lead to severe psychological or physical dependence and has a high potential for abuse.
This medicine should only be used for an extended period of time if the pain remains severe enough to require an opioid analgesic and other treatment options continue to be inadequate.
Warning:
You should not stop using this medicine suddenly. Follow your doctor’s instructions about gradually decreasing your dose.
Your doctor may recommend you get naloxone (a medicine to reverse an opioid overdose) and keep it with you at all times. A person caring for you can give the naloxone if you stop breathing or don’t wake up. Your caregiver must still get emergency medical help and may need to perform CPR (cardiopulmonary resuscitation) on you while waiting for help to arrive.
Things to avoid while taking this med:
Do not drink alcohol. Dangerous side effects or death could occur.
Avoid driving or operating machinery until you know how this medicine will affect you. Dizziness or severe drowsiness can cause falls or other accidents.
Avoid medication errors. Always check the brand and strength of oxycodone you get from the pharmacy.
Common side effects:
headache,
constipation,
feeling sick (nausea),
feeling sleepy (drowsiness),
dizziness,
tiredness,
stomach pain,
vomiting,
itching, red eyes, or flushing.
Sennosides-docusate sodium (over the counter med)
What is it?
Docusate is a stool softener. Senna is a laxative.
Docusate and senna is a combination medicine used to treat occasional constipation.
Docusate and senna may also be used for purposes not listed in this medication guide.
Common side effects:
gas, bloating;
diarrhea; or
mild nausea.
Melatonin (over the counter med)
What is it?
It is often used to help with jet lag or trouble sleeping and comes as tablets, capsules, an oral liquid and chewable gummies.
Melatonin is also a natural hormone your body secretes in response to darkness to help maintain your wake-sleep cycle (also called “biological clock”). The wake-sleep cycle is the process of sleep and wakefulness; in humans this averages 8 hours of nighttime sleep and 16 hours of daytime activity.
Natural melatonin levels usually peak between 11PM and 3AM. Nighttime levels are roughly 10 times higher than in the daytime. Levels fall sharply before daylight, and are barely detectable in the daylight hours. The rise and fall in natural levels signal wake and sleep times, known as our circadian rhythm.
Shorter periods of natural melatonin production occur in the summer with longer days, and longer periods of production occur in the winter. Light at night (such as from smartphones or the TV) blocks production and can lead to sleep disturbances. Age also lowers nighttime melatonin release, which may contribute to the problem of insomnia and early awakening often seen in older adults.
Things to avoid while taking this med:
Avoid driving or operating machinery for at least 4 hours after taking melatonin, or until the drowsy effects are no longer present.
Avoid using this medication with other prescription medications, over-the-counter drugs, or dietary supplements without asking your doctor, pharmacist or other healthcare provider.
Avoid alcohol while taking this medication.
Avoid coffee, tea, cola, energy drinks, or other products that contain caffeine, as it may counteract the effects of the melatonin.
That’s it! Well, that’s it for now. My meds have been changing almost weekly, and once we figure out this darn mutation I’m sure the drugs will all change again. We are still probably weeks out from knowing the results, especially since I won’t get my new biopsy until next week, so I stay patient. Or try to.
Today is a good day though! I’m meeting with my Radiation Oncologist to discuss further treating my ribs. I would say 75% of my pain is in the ribs, front, back, top,and bottom, so any relief I can get there will be amazing.
So that about wraps it up for the day, but friends, I like hearing from you when I post these diatribes.
Would you mind sharing something with me today?
How about one thing you are looking forward to today. That’s today, Friday, February 21. Give me something good. Give me something hopeful. It can be a snuggle with your cat, it can be the first sip of your tea, it can be your morning walk or whatever!
She-ra Hikes 