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.