The last week

I had my CT scan on April 12th and will only find out today if I'm still in remission. The past week has been difficult for many reasons.

Uncertainty, even though it doesn't seem like it, is a gift. It's still leaves room for hope. While I'm waiting on my results, someone else is learning they're terminal. It doesn't make waiting easier, but it helps put it in perspective... hope exists.

~~~

My new wheelchair won't be the model closest to the one I have because it's no longer made. I had two choices to pick from... neither one is optimal. If I get the wrong wheelchair, I'm stuck in my apartment indefinitely. Everyone thinks the process of finding the right chair is fun and quick until they go through it.

The day after my scan, I received my mother's ashes from my oldest brother. The funeral home had some delays with getting us her remains due to COVID and the storm in Texas. My mother raised us on her own (and we don't have a lot of extended family), so her loss is especially difficult. It also makes me dwell more on my mortality.

I'm barely hanging on... but I am.

Missing them

 I lost two people to cancer last year. One person was someone I called "uncle" who I didn't know was sick... why I wasn't told, I still ponder. The other person was a woman I met during chemo who lost her battle a month before Christmas. 

Cancer has stolen more lives from me than spared them.

I mourn and keep good thoughts of my chemo buddy. I mourn and remember her optimism and faith in the face of the rabid shark called "abysmal odds".

I mourn and keep love tucked in my heart's pocket for my uncle. I remember the boisterous and funny man who always seemed like he was in on something the rest of us could never guess.

Clear cancer, complicated feelings

The week before my PET scan, my brain slid into overdrive.  I was no longer cautiously optimistic and casting furtive glances at my future.  My thoughts perfected an uroboros, eating me alive.  I was sure my cancer was back.  I couldn't sleep.  I cried a lot.  I told myself all signs were positive, but it did little good.  When people would ask how I was coping, I'd answer "Stressed, but okay".  "Okay" was a type of prayer.  "Okay" was what I hoped to achieve.

Long story short: My cancer is still gone.  I found out Thursday on camera with Dr. Y. and almost burst into tears.  He said I seemed surprised.  It was an understatement. Relief flooded my body.

I thought I'd spend the next few days in euphoria, cascading into rainbow puddles. Except, I'm not.  Yesterday, I had one of the most complicated days of my life.  It was almost like I didn't know what to do with the information after receiving bad news for so long.  Relief, joy, guilt, and futility rushed towards me.

Why am I still alive when truly incredible people die every day? 

I want to hurt myself.

Even if I live to be 100 years old, I'll never be useful and worthy.  Giving me extra time to live is probably a waste.

Am I suffering from clinical depression?

Dr. Y. said he'll know I'm in trouble when I stop making jokes.  He has yet to figure out humor is my sword and shield.  It keeps people from peeking beneath my mask.  It disarms them and changes their minds about me.

Where is my head at today?  I'm not entirely sure.  Perhaps I'm just going to have blender-brain for awhile—everything swirled together and processing... processing.

My Decision to Delay

Since the world is filtering itself into unadulterated chaos, I'm making the difficult decision to postpone my oncology appointment until early May.  I want to know for sure that I'm still in remission, but there are too many factors to consider right now. An eleven-hour day with seven of it at a hospital is just not feasible (unless it's an emergency).  People scare me more than COVID-19 sometimes.

I will still get my blood work done at a closer hospital.  I don't want to risk blood clots in my jugular or other pleasantries if I don't go.

I'm looking at only going to medical appointments until May.  Unfortunately, it means postponement of things I've looked forward to or promised.  It means being housebound for over four months (my last non-medical outing was early January).  So much of my life is held-breath personified.

Thymic rebound?

On December 16th, I had a CT scan.  I was hoping for concrete good news, but my health generally ends up more complicated than that.

Important facts:

1. I'm no longer anemic.  The iron supplements are working, so I don't need to be scoped.
2. I might have cystitis.  My bladder wall is thickening, so it might be the chronic type.  I've had strange fevers once a month with low, pelvic pain and cystitis could be the explanation.
3. There is a spot in my chest that Dr. Y. is pretty sure is thymic rebound.  He said this before and it turned out to be Hodgkin's, so I'm not convinced.  I left the hospital feeling like round two of chemotherapy is in my future... but, I want to be wrong.  

I see a urologist in February for the possible cystitis.  Soon, I'll have a specialist for every organ and system inside me.

I get another PET scan in March due to the spot.  Out damn spot, out I say!  Ugh.

Overall, I suppose the news isn't too bad.  A possible (supposedly unlikely) tiny bit of cancer is quite preferred to knowing it's back for sure.  It's just... more uncertainty.

Anemia... again

TW:  Self-harm

The only thing learned from yesterday's oncology appointment was that I'm anemic.  Been there, done that.  The difference this time is I can't point at a specific cause and say, "Ah, here's the culprit!".

My doctor thinks I have a small, internal bleed (ulcer).  I must go back to iron supplements and stop taking my measly dose of daily Ibuprophen.  If things don't improve with my next set of tests, I'll need a scoping.  Been there, done that... twice.

*~*

My real problem is stress.  I internalize it, bathe in it, wrap it around me like a shawl.  I don't often talk about what's bothering me for multiple reasons (few people want to hear it, anyway).  I've tried various things to relieve it over the years.  There isn't much to dent it.  I can't turn it off.

The last few years were hard.  Two different cancers, apartment renovations, surgeries, an ill parent... more and more.

The month I was told I was in remission, I fell into a depression.  I cried every day.  I had bite marks up and down my arms (I've self-harmed since I was a teenager because it's a surefire way to cope with overwhelm).  A handful of people closest to me knew what was going on, but I didn't share the severity.  I didn't want to die, but I had a strong urge to disappear.  Thankfully, the storm of emotion only lasted a month.

*~*

Now that the renovations are over, I'm still in remission (as far as I know) and we're sliding into my favorite month soon, perhaps the strain will lessen.  I hope so.

The thing I'm fighting against currently is the feeling of futility.  But, that's a post for another blog.

Port flush merry-go-round

The port will stay in my body for a while because I'll need labs and scans.  I trace the bump beneath my skin, and think about how much easier these past months were because of it.  But, I'm starting to view my port with a startling animosity.

Once you're done with chemotherapy, you still need a monthly appointment to get it flushed.  My oncologist's office suggested I have it done where I went for radiation therapy (an hour away).  I was hoping for something closer because of how busy my summers are and how much chronic pain I endure.

So, I called the local hospital.  They don't do it.

I called my Nurse Practitioner.  Her office don't have the supplies, and she can't write an order for me (even if I can get it done locally).

I called the clinic here... no dice.

But wait, there's a cancer center here!  They do port flushes.  I had my oncologist's office fax them the order, but I didn't hear anything from anyone for a week or two.  I decided to call the cancer center today.  They never received an order!  I emailed my oncologist with a new fax number.  Later, it was confirmed the cancer center had everything they needed.  I made the appointment.

Hallelujah!

Except...

I need a local doctor to co-sign the order.  Since my Nurse Practitioner can't do it, I'd have to establish myself as a patient of another doctor here so they'll do it.  As it is now, none of the doctors feel "comfortable" doing it for me.  You'd think I needed a prescription for Dilaudid for as reluctant as they are!

So, I have to go to the place I received radiation.  We're back to where it began:  A two-hour round-trip just to get my port flushed.

I'm so tired of this.

Remission!

I'm in remission!  My next oncology appointment is in September.  I can breathe a bit.  I can plan.

PET Scan June 7th

I managed to make it to my last chemotherapy appointment.  I wished my four nurses well and handed out flower seed packets that said, "thank you for helping hope blossom" to everyone who assisted me over the last three months.

There is a month gap between chemotherapy and the scan to see if treatment worked.  It is a stressful wait.  It would probably be worse if I weren't too exhausted to think much of the time.

I can't let myself imagine what happens if this didn't work.  The last three months, I've barely been myself.  My writing has suffered.  My plans are on hold.

June 7th is the day before our twelfth wedding anniversary.  Will my husband and I have something more to celebrate this year?  I can only hope.

On (physical) weakness...

Since my mom was in the hospital for actual Easter, the Easter Bunny was kind enough to come to my family's house yesterday.  My family planned dinner around then so my husband and I could be there.  I was happy I didn't technically "miss" the holiday.

I decided to shower yesterday before getting ready to go.  Mistake.  I have chronic pain, and the shower was taxing and miserable.  When it came time to get in my wheelchair... I couldn't.

My husband and I tried multiple times.  My body wouldn't cooperate.  I didn't have any strength left.  I was stressed and angry.  I've always lifted myself before, even when I weighed over a hundred pounds more than I do now.  My strength is something I depend on.  We ended up calling my brother to come help us, which worked.

My last chemotherapy treatment is tomorrow.  I'm terrified I won't be able to get in my wheelchair to go.  I can't miss chemo.  I'm afraid my husband will get hurt trying to lift me, or I'll have to suffer humiliation as I phone EMTs for help.

Chemotherapy is cumulative and saps my strength.  Chemotherapy exhausts me for extended periods each dose, which has the added drawback of triggering my tachycardia.  But, I'm not used to weakness.  It's so hard to deal with.

Complaining... because I need to (no holiday)

Tuesday, everything seemed back on track.  Fourth dose?  Done!  Injection to keep my white blood cells up?  Administered.  I left the hospital feeling slightly confident and chipper (well, as much as you can after chemo).

You see, the injection and when my next appointment fell meant I could have Easter with my family!  I tend to miss at least one family holiday every single year.  2018:  I had surgery to remove the mass in my chest and missed Thanksgiving.  2017:  Thanksgiving was again absent because I was recovering from internal radiation.  2016:  Almost died Easter weekend and spent it in the hospital.

But, 2019 was looking up!

Until they switched my chemotherapy day to Monday instead of Tuesday...

Chronic pain means you rarely do days out, much less back-to-back.  So, no Easter.

If that isn't enough of a kick in the gut, I was also told I have blood work I have to do at the local hospital Monday or Tuesday this week.  I was supposed to be given a slip at my appointment.  The specialized van service in my area can't fit me in because it's last-minute.  My husband and I will either try the bus in our area or walk down and back if the sidewalks are clear.  I don't know what to do if I can't make it.

I spent most of the day yesterday crying and sleeping.   Few things in life I hope for tend to come to pass.  Maybe the energy of small hopes will end up in bigger ones...

Neutropenia, the last appointment, and not wanting to go

I had dangerously low white blood cells on Tuesday.  I was told by a nurse practitioner because I saw her instead of my oncologist.  Why?  I don't know.  Maybe Dr. Y. was on vacation.

I asked the nurse practitioner if we could give me the injection to remove the white cells from my marrow and give me chemo.  No.  I asked if I could have the injection before she sent me home to guarantee I could get chemotherapy the following week.  No.  Why?  I don't know.

Tomorrow, I see a different nurse practitioner.  Tomorrow, I find out if my body produced enough cells to get the green light for treatment.  I don't want to go tomorrow.  Why?
*~*
Tuesday was difficult for me.  I didn't feel listened to by the nurse practitioner or her assistant.  I had more pain than normal (chronic pain is a plague on my existence).  I do fasting blood tests and chemotherapy days are long (I didn't eat for twenty hours).  I counted on completing chemo by a specific date; the finish line helped me hang on.

After recovering from the trip, I had a good week.  No increased side effects.  My husband and I played video games and spent a lot of time together.  I wrote blog posts, made sure a project of mine could continue, and edited my forthcoming chapbook.  I had energy to sing.  There were no naps!  I was me again!
*~*
Today, I cried.  I don't want to feel sick again.  I don't want to lose my ability to think or my energy.  I don't want to deal with another nurse practitioner who dismisses me.  I don't want another bad pain day.  I don't want to make a trip for no reason.

I don't wanna, I don't wanna, I don't wanna!

Know what else I don't want to do?  Leave my husband a widower.  Everything else is temporary.  So, I will go and hope for better things.  Sometimes, that's all anyone can do.

Not Wigging Out

"You're going to lose your hair."

It's difficult to take.  My hair is one of the only physical attributes I like.  If I cut it too short, I cry.  My breath gets shaky when I assess my options.  I ponder wigs close to my natural color and texture.  I think about radical purples and neon pinks.  How will synthetic fibers behave in high winds?  I imagine a gust absconding with my temporary hairdo and giving it to a tree out of spite.

"It doesn't start falling out until shortly after dose two."

My hair thins out for a few days after my second dose, but then it holds steady.  I'm relieved by the temporary stop.  Maybe I won't go completely bald.  It doesn't have to happen to everyone, right?

"Are you sure you don't want hair?"

Gayle bustles around the room, gathering hats and scarves for me before I go to my third chemotherapy treatment.  Everything is free, but I feel guilty taking it.  The disposeable cap on my head simulates baldness as I stare at myself in an oval mirror.  My husband compliments me with each thing I try on.  I leave with a pink gift bag full of things to hide one of chemo's more telling presents.

"Some people just buzz it all off."

My hair almost entirely abandons me after dose three.  I chop off the length to keep it from tangling as it evacuates onto my pillows and clothes.  I now have bare spots and downy wisps like a baby bird.  My scalp is sensitive and hurts for no reason, and I want to shave my head but decide against it.  I stare at my face in the bathroom mirror until I don't care about what frames my fat cheeks and quadruple chin.

"No one will be fooled by a wig when I don't even have eyelashes," I tell my mom.

Eventually, every hair on my body is going to go.  There will be no "hiding" what is happening to me.  I'm not artistic enough to draw convincing eyebrows.  I go outside in my turquoise hat for the first time, and I don't lament my missing locks... I rejoice that I'm still here.

When thoughts of death wake me...

...in the middle of the night, I come to consciousness sharp.  My body startles like birds buckshotted from branches.  I'm in the dark, husband with parted lips by my side.

And, I'm scared.  I fear death.  I've almost died more times at 34 than most people can boast throughout a lifetime.  I've had cancer twice.  Will this be what ends me?

I think of my last conversations.  Did I tell my husband he is my all?  Did my mom and I say anything meaningful to each other?  Will my sister know what a privilege it was to be her sidekick?  What did I say, and did it convey my love and gratitude correctly?

I tell myself I'm still alive.  Still here now.  This moment of anxiety and dread sponsored by a beating heart.  No one is promised anything else.  It's the same promise I was given before cancer:  You're alive this instant... congratulations!

Minutes tick by.

I think of everything I want for everyone I love.  I hold them in my heart and pray for them.  They are my legacy to this world—everything good I've ever done they helped shape a thousand ways.  I hope they can say the same of me.

Then, there are my favorite memories I keep like a mix-tape:  My first kiss at the airport the day after Christmas, singing to Kitty Wells with my mom, shooting bow and arrow in the barn, family camping trips, the walk of a thousand fireflies.  More things, each something beautiful and irreplaceable.  I focus my mind inside a moment that made me feel most whole or moved me.

By the time I fall asleep again, I'm smiling.

Maybe, by the time my life ends, there will be more mix-tape memories.  Maybe there will be more people I hold so close they smudge the glass of my soul.  Maybe fear is a partition my dreams exist beyond, should I choose to seek them.

Chemo: The guessing game

It's time to play, well, no one's favorite game! Guess What?!  It's the game where chemotherapy patients wonder just what the hell is going on.

Questions from this dose include:

Where is the blood coming from?  Toes.

When will I have another bowel movement?  Five days.  Then your toes aren't the only bloody part.

How much hair am I losing daily?  Half an ice cream pail of strands.

Why am I hurting so much?  Chemo, weather front, and an injection.

I'm entering week two (my "better" week of each dose) tomorrow.  I can do this.  I just wish it weren't so rough.

ABVD Cocktail

A = Adriamycin
B = Bleomycin
V = Vinblastine
D = Dacarbazine

These four drugs are in my chemotherapy cocktail.  Each comes with its own quirks or problems.

Supplementary medicines:

Emend = anti-nausea
Dexamethasone = steroid
Prochlorperazine = anti-nausea (as needed)
Ondansetron = anti-nausea
*~*~*
I am finally starting to regain the energy and mental prowess chemo absconded with this past week.  I was zonked, which is something I didn't expect this quickly.  It was difficult to deal with.

But, chemo doesn't stop there!  I also have/had:  Random muscle pains, urinary incontinence, severe constipation, and painful esophagus/stomach.  Some side effects are so bad I'm halfway convinced something terrible is going to occur soon.  My mouth always feels coated in something half-innocuous, half-vile.

I'm trying to mitigate damage as much as possible.  Ice cream helps my burning esophagus (small servings of fairly plain kinds or I get nauseous).  Stool softeners are at the ready.  Warmth helps the muscle pain.
*~*~*
I lack the will to do much right now.  Regulating my body feels like a full-time job, but the end results will be worth it.  I'm holding onto thoughts of life post-cancer.

Cancer vs. disease

If the doctor said you had cancer, what would be your first reaction?  What about a disease?  Would it feel the same?  Better?

Cancer carries a death sentence in most people's minds.  It doesn't matter what stage.  The first thing that flashes through their heads is "I could die".  Or worse:  "I'm going to die."

A disease sounds yucky, but it doesn't necessarily mean fatal.  It sounds like someone is sick and can be treated.  There are various diseases.  Cancer is simply a type of disease.

Words matter.  They change our perceptions and possess different amounts of baggage.  If you can't handle thinking about "cancer", think about your "disease".  You're sick.  You aren't dead yet.

There are more statistics than number of deaths.  There are millions of people who've survived cancer.  More will be declared cancer-free tomorrow.  Hope still... and always.

Port placement, blood, and snow

The most frightening thing is the unknown.  What will the test feel like?  What side effects will I have?  Can I even do this?
*~*~*
Port placement is a relatively simple procedure, though the process before and the recovery after take a bit.  In fact, the doctor only works on you for fifteen minutes... tops.  You get a little twilight sedation and numbing agent.  They give you antibiotics.  You turn your head to one side.  Your breast has tape on it that they stick to your leg to recreate gravity while you're lying down.  They put blue paper-cloth around the work area (which might drape over your face a bit).  You have quick imaging before the doctor cuts so they know where your veins lie.  It doesn't hurt beyond the poke of the lidocaine injection.
*~*~*
I made it through fine, though a little woozy from the anesthesia.  When I went to lie down at home however, I started to ooze blood down my chest.

After a few phone calls (and a frightening twenty minutes), I learned I hadn't clotted properly and simply had to sit up longer.  So, after four additional hours of sitting (which isn't easy with my chronic pain) and putting a pad on the wound, everything is fine.  Scary, but I'm fine.  I'm sore for a lot of reasons today.
*~*~*
My first chemo treatment is Monday.  My area has a snowstorm watch for Sunday and Monday.  I might have to reschedule.
 

Rough day (chemo starts January 28th)

You know how some days just go incredibly wrong?  Yesterday was one of those.

*~*~*

At the first appointment, everyone I spoke to thought my port placement was happening that day.  I showed them the paper, but they were not convinced.  They conferred with each other, but no conclusion was made.  Thankfully, the system had the correct day.  Even after they checked the computer, the nurse still had someone walk my husband and me down to the surgery department... and it wasn't to show us for next time.

The second appointment was cancelled.  I wasn't told.  It took us twenty minutes to be told to go to my next appointment.  I snapped at my husband in the elevator because nothing was going right—and I need things to go smoothly when I'm stressed.

The third appointment was my echocardiogram where I ended up needing an IV started so I could receive an injection.  Apparently, there is something they give patients whose heart doesn't show up clearly.  (I'm quite fat and wasn't lying down, so...)  After the exam, I had bands of pain radiating down my biceps.  Strange, but it only lasted five or ten minutes.  Though I experience a lot of different aches, that was new.

At my last appointment, they could only do part of my pulmonary test because I can't sit on a normal chair inside a raised box.  I guess my difficulty with transferring isn't written in my file.

*~*~*

As we get on the van to go home, my husband dropped his headphones and broke them.  He thinks he can fix them with tape.

When we get to our apartment, there was a bill for over $3,000 in our mailbox for my MRI.  I'm not supposed to be responsible for my medical bills (one of the few benefits of being a cripple in poverty).  Something has gone wrong.  I talked to someone about my "prior authorization" rejection recently and they told me not to worry if I haven't received a bill...

I'm just so exhausted.

Three Cycles of Chemotherapy

Late this month, I start chemotherapy for stage one Hodgkin Lymphoma.  Potential side effects:  Nausea, vomiting, fatigue, trashed immune system, hair loss, neuropathy, and heart/lung damage; some side effects are temporary. I will need a port put in for treatment.

If I understood correctly, I will be receiving one dose of chemo every two weeks for a grand total of six doses.  Yes, most of my time will be spent feeling like hell, but there isn't much else to be done.  Yes, I'm nervous.  My body doesn't handle things well most of the time.  Yes, I'm scared.

There are currently no plans to combine chemotherapy with radiation, which is the standard procedure.  My oncologist said it might cause me more problems down the road.  I've already had radiation once in my life, if I can limit further exposure, it's probably for the best.  We can always reconsider if we must.