Choose Joy

Finding joy on the PCT was part of why I kept hiking and made it my career.

Maybe I’ve been going about this year all wrong. Ok, I’m going to backtrack a bit…I don’t think I’ve done it all wrong, there have been a lot of beautiful moments, like when Amber opened up her house to us to have an exuberant birthday party with about fifty wonderful souls who rallied around me even when I spent the day puking. Like when Kirk and I went snorkeling in warm Gulf waters this May, or when I finished the Camino in Spain with two new friends. Is it this book project that’s tethering me to the pain of the year? What if I let that thread go for a while? What if I let the scab grow, which might be faster to do if I’m not picking at it all the time by trying to write too soon?

I’m going to choose joy for a while and see where that leads me.

And yes, that still involves writing, surprise! 

Yesterday, I was working through an exercise from Ursula K. Le Guin’s Steering the Craft book, the one about reading your work aloud and having fun with the sound and play of words, and something blossomed inside. I was writing around a scene on one of my hikes, a day filled with laughter and play, and I kept returning to that story again and again over the day. I wanted to be in it. I wanted to keep that scene fresh in my mind because the feeling was so different than writing about how my radiation has made my lower back perpetually painful and tight, or how a different approach to the tumors that surrounded my brain could have left me with memory loss or cognition problems. I want to think about something else for a while.

The hangover from that joy has been growing. I decided shortly after writing that exercise that I wouldn’t feel guilty about having christmas cookies for breakfast. I did eat a few nuts so that I got the protein that I need while taking my morning medications, but I ate cookies. I ate cookies dipped in whipped cream and I didn’t feel guilty about it at all! I decided to take the rest of the year off from guilt as well. If life is indeed short, what would it feel like to search for and create joy while saying goodbye to guilt? 

Anyone want to give it a try with me? 

Let’s make this a fun experiment…because that’s what I like to do! Let me know how it goes for you: the seeking joy and forgetting guilt for a while part. Perhaps in this next phase of trying to figure out who I am now, I will write about how my experiment is going, and also tell some stories from some of your experiments. When I worked at the publishing company for four years, that time was primarily filled with writing profiles on artists and businesses around town. It wasn’t quite journalism; it was finding what was interesting, compelling, and unique about these community members and sharing that through my writing. What if we do some of that with these stories? 


I’m posting this over at Substack as well where commenting is easier. All my posts are FREE. Just click ‘none’ on the subscription options.

Write from the Scar

In happier times…just a few days ago in fact! At the ONDA Christmas party with Phyllis and Mary, two amazing women.

I’m so tired. Maybe it’s the ghost of the impending anniversaries from December 2024 and learning the truth about my injuries, but what’s my excuse this year? I’m discombobulated. I’m depressed. I’m in pain, and I’m grieving for something. I think it’s for who I used to be.

Yesterday I sunk into the depths of a dispair that I didn’t know existed, but today I woke up determined to have a better day. That looks like standing up without bracing for the rushing pain of low blood pressure in my head and shoulders, and instead slowly moving through it, anticipating the other side of the dizzyness, not getting derailed by the dizziness. That looks like leaving the house to write at a coffee shop where I can type these sentences with the accountability of being a human in public.

I don’t yet have the words to explain why I dip into these deep chasms of weeping, but when I try to understand, when I type out the sentiment behind the feeling, I can at least distance myself from it enough to see it a bit more objectively. That perspective takes on more weight as I circle around and around the idea of writing a book about my cancer experience. “Write from the scar, not the wound,” author Cheri Kephart said in her workshop, and that makes sense for a book. My book will be written from the scar, but this blog is written from the wound. From the bloody front lines of a life torn apart and knitting itself back together. At times I think I’m healing and toughing up, but yesterday reveals that I’m still raw and bleeding. The wound is tender and sore. 

Bits from this blog may end up in the book, but I imagine the book will look back on this experience from a larger scale (hello fractal, my old friend). It will be putting all the pieces back together as a work of art, with thought and craft and structure… but now I’m still discovering what the pieces are, and what shapes they take. Writing here is sometimes messy, unshaped, uneven, and scattered, but it’s helping me find the pieces far faster than if I were stewing in this malaise and pain without getting it out into the open and letting it breathe. Writing from the wound is completely appropriate to this phase where I’m trying to make sense of what it means to almost die, to get a second chance at life, to confront my limitations in this new body, all within the context of losing my Dad just a few months ago. 

Saw this on Substack and thought it appropriate, is depressed almost the same as stressed? In dessert speak, that is.

In a way, remission has been harder than treatment. At least during the treatment phase, I had a reason for being tired all the time, I had an excuse for staying in bed and not answering my emails. But after? Maybe it’s the scanxiety (the anxiety of the cancer coming back…all to be revealed in my next scans in early January, and every three months after…for the rest of my life) or it could be PTSD from my close brush with death a year ago. Or maybe there is no reason, and it’s just one big pile of shit that threatens to suffocate me each day.

Some days I don’t feel better, and wonder, is this the new normal? Now I’m starting to understand why people give up, why they don’t want to be alive with cancer anymore. But just thinking that thought scares me into thinking that thought will invite it back. If our minds are that powerful, can thinking about it coming back open the door? (proceeds to tear hair out)

Writing here has been such a lifeline; that’s a reason not to tear my hair out. Fun fact: my hair was thinning during the chemo process, but now it’s growing back, and in certain mirrors I catch a glimpse of myself with 2 inch hairs standing up from my part line; it does make me giggle (actually, you can see it in the photo above!). Through writing, I’ve been in conversation with myself and with you, and these connections have been everything. I’m sending out holiday cards this year, and it’s truly overwhelming. I look at the list of people who donated to my go fund me, who sent cards and care packages, who dropped off meals and stopped by for a visit, and there is not enough stationery or stamps to write enough cards. Hundreds of you came through for me this year, and even if you don’t get a card in the mail, please know how important you were and are to me. I’m so rich in friendship, true connection, and love that I know none of this has to be faced alone, even when I feel alone.

So let’s end this blog post on a high note. Thank you for listening. Even if it feels like I am screaming into the void, I know you are listening and care. That helps so much.

March 23 Cancer Update

Get ready for some neck.

I saw the neck surgeon this week to evaluate my collapsing C7 and look at my C4 three months post surgery, and I got the all clear! The doc said the C7 doesn’t have to be addressed, and that I can live with it (we didn’t talk about backpacking, I have a feeling a full-weighted backpack might paint a different picture). I then took some x rays which showed that my C4 is appropriately healed. So that means I can start taking my c-collar off. Get ready for some neck!

So the last few days I’ve been spending more time with it off, getting used to the weight of my head again. I’m practicing turning my head and nodding again, all things I haven’t been able to do for three months. A bulk of the work will come to play with my PT. I’m transitioning away from the in-home PT to an outpatient situation, and it’s like I’m graduating or something…I’m slowly being positioned to live without daily doctors appointments and check-ins. We are also looking at decreasing my meds…I’m already off the steroids and we are looking at the pain meds next. Am I in pain anymore? It’s hard to say. Are the meds masking pain or do I even have pain any more? I have discomfort for sure, but pain? 

All this is coming as I look at making my first trip to the trails summit in Wisconsin in three weeks. Can I be ready to walk around without my collar most of the day in three weeks? Can I have a glass of wine at a happy hour in three weeks? Can I sleep without an adjustable bed in three weeks? 

The rash is still rashing, but it’s not getting worse, I guess it’s clearing up, maybe a little?

I still feel the cancer in my spine and in my ribs. Is the tagresso doing it’s job? Maybe a little?

I’ve been sleeping a lot. Like half the day away, but again, I’m not fighting it. But I feel like I’m in a bit of a daze all the time. Sleeping so much puts a dream-like quality to everything. If I’m not myself right now it’s because I’m a dazed and dreamy version of myself. 

I’m struggling with the habit of productivity. I went on a walk with a friend yesterday and we talked a bit about it. She wondered if it was a mid-western quality…this need to always be moving some ball forward, even when dealing with stage 4 cancer. What am I trying to be productive about? Well, writing here for one, diving into my past for two, and putting out there that I want to write a book (Really! Sometimes that just seems insane), and then writing thank-you cards for everything. That it’s ok to let some or all of it go.  I know that it is, but the blog serves as a processing time as well, and it is keeping you all in my life, which I really need these days. 

I got a card from a stranger, a hiker that has been reading my blog for years but I’ve never met, and I needed to read that card that day. It made such a difference in my morale and mood. I need all of you in my life, so I want to be productive enough to update the blog to keep you all informed and close. I need all of you. 

I got another card recently from a volunteer that came on one of my trail work trips last year. I only met her that one time, and she wrote the most beautiful card with gifts of song and book recommendations. I love that, that kind of thing fuels my day, and I’m thrilled to add to my reading list too 🙂

So all of this to say, I don’t know where my need to be productive comes from, but I don’t want to give up the need to write, and sure maybe I’ll stitch some of this together into something that could be called a book, but I do want to give up the idea that I’m going to come out the other side of this looking for a publisher. I want to give myself time to just be. And right now that looks like a lot of sleeping. Not as much reading as I’d like (reading puts me to sleep right now), but I’m just going to let it be and not fight against it. 

You will probably have to remind me of that from time to time! 

March 20 Cancer Update

I was doing this last March 20…section hiking the Idaho Centennial Trail.

It’s the first day of Spring. Lets do this.

I’m ready for some change.

In all honesty, I’ve seen a lot of change this week. For one, I’ve been sleeping! Something flipped last weekend and suddenly I was sleeping most of the night and sleeping throughout the day. I couldn’t sleep enough. I was in a dis-combubulated haze of sleep for a few days there, and didn’t fight it. I don’t know if it was transitioning from Trazodone to Magnesium Glycinate and a sleep THC/CBD tincture, or maybe it was decreasing the steroid I was taking, or maybe it was my body saying, “enough,” but it was time.

I’ve also been seeing changes in the form of some of those side-effects from my new mutation drug, Tagrisso. There was a line about adult acne in the list of side effects, and a few days ago my legs erupted in a red rash of something. It’s not really itchy, but it looks bad. Real bad. I had a consult with the docs this week and they prescribed a steroid cream for it, and my acupuncturist suggested drinking celery juice for it’s anti-inflammatory and cooling qualities (Note: for those of you suffering from high blood pressure, try some celery juice!) I fully believe that food is medicine, and hope to be learning more and incorporating more food medicines through this journey of mine.

What else has been going on? Oh it’s winter again, or it was for a while this weekend. Snow and ice have covered the ground and curtailed some of my daily walks…I think that has added to my malaise.

And I’ve lost my taste for coffee…I’ve gone several days without it, which is very odd. Oh and my stomach is a mess. I can’t seem to digest anything.

So in general I’ve been living in a foggy state of existence this week. I’m not sure if I’m snapping out of it? I woke up at 1am this morning and got up, so we’ll see. 

You all continue to send me exciting books. I’m eager to read some of the new arrivals: Between Two Kingdoms, Wind, Sand and Stars, and My Journey to Lhasa. One that I’ve been working on for a while now and am almost done with is The Mission Walker. I’m really in the mood for good adventure books.

As for shows, Kirk and I just finished season 1 of Severance, and just started season 2. Go Mark and the Innies!

In general all the changes seem to be not so productive. I haven’t seen a big difference in my pain levels, in the feeling in my spine and ribs. I hope the new med is working, but I guess we won’t know for a while. At least I don’t feel like the cancer has changed course since I started Tagrisso, but who knows.

I don’t think I’m going to deep dive into past stories today. Not feeling it. 

Instead I’ll open one of those books and read until my eyes can’t stay open and then go to bed again. 

Peace out.

Cancer Update 2/21

Amber and I hiked the Corvallis to Sea Trail in 2021 when it opened.

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. 

Sometimes I take a THC/CBD gummy. I’ve been trying the Bend Mission Farms Rest CBD Gummies with Nano CBD, but tonight as I was looking at the sugar content (I’ve really been trying to avoid sugars…they make me bloat up and I have been feeling better if I avoid too much of the stuff) I ordered the Full Spectrum Max Rest CBD Oil – 2000mg CBD, 1 fl oz, Orange Lavender Spice to try out. So we’ll see if that makes a difference.

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!