Thursday, 14 June 2018

Dosage reduction...

So yesterday was a bit interesting.  At the beginning of every cycle (I am currently on cycle 9 of 12!) I have to answer a bunch of questions about side effects and whether or not I'm struggling with them.  I've been handling the side effects really well.  Some have gotten more prevalent and some (like the hair loss and jaw pain) have almost disappeared, so overall, things are going ok.

But when she asked about neuropathy (the numbness I've been experiencing) I was honest and told my nurse that my fingers are pretty much numb all the time now and were still numb yesterday from the last treatment two weeks ago.  But I told her I could still do things like typing and sewing, it just felt a little funny, like they're asleep.  Then I told her that that numbness had also moved into my feet and sometimes it hurt to walk a little.

So she consulted with the other nurse and they phoned a couple of oncologists to consult, and they decided to reduce my oxapilaten dosage.  I had to go home for about an hour an a half while I waited for the pharmacy to remix my new dosage, so I didn't get home from the infusion until after the kids were home from school.

While I appreciate the lower toxicity going into my last four treatments, I'm having mixed feelings.  I do feel like I can handle the numbness as I have been so far, and I worry that lower dosages might be less effective.

I'm sure it's all in my head... the nurses are the experts, not me.

Anyway, 9 almost down (get unhooked tomorrow), three to go.  Then we will see what my upcoming scan shows.

And... shoutout to my cousin, Joy, who has been dealing with the after effects of her kidney cancer for the last several years and had emergency surgery for a brain tumour that her oncologist discovered in January.  She's been going through radiation and chemo pills and has been officially given the "No evidence of disease" diagnosis.  So, YAY JOY! 

Wait for me, Joy, I'll be joining your survivor's club, soon!  Feeling optimistic these days.


Thursday, 31 May 2018

Haven't blogged in a while...

Nothing really to update.   I'm still doing well.  I'm dealing with tingling and numbness in my fingers pretty much daily now and starting to feel pain in my feet now, too.   I'm not getting any of the breaks in week 2 (my off chemo week) that I was at the beginning.  On the plus side, though, I'm in the middle of treatment 8, so there are really only 4 infusions left and in 8 weeks I'll be saying goodbye to chemo (hopefully forever if my post-chemo scans look promising).

Tired is not adequate to describe how I'm feeling, though.  It's a complete utter exhaustion that is affecting my every body part and my brain, and I'm sure my personality.   Today is a good-day (steriods coursing through my body make chemo days actually quite productive) but tomorrow I will likely crash again.

I have to lower the expectations I have on myself and stop writing this "Oh, I have all this time off work, I'd better get stuff done around here" expectations I have of myself.  Today's goal... laundry.  Tomorrow's, relax.  Keep it realistic! 

I have all summer off with the kids; we can do the decluttering of the winter clothing that still clutter up the area surrounding our front door, the clothes that are outgrown but still in the kids' dressers, and the toys that haven't seen the light of day in years,  during July (or August when I'm completely off the chemo).

So really, I'm doing good. The stereotypes I had in my head pre-chemo, have proven to be needless worries.  Only had one bad day of vomiting out of the 3 months I've been doing this.  Also only lost about a third of my hair and the loss seems to have slowed back to what it was before chemo --- normal, daily, clean-out-the comb, levels of hair loss.  So, if you know me, you know I had insanely thick hair to start with.  Now I have a lovely medium amount of hair.  Cutting it short probably helped with stemming the loss, and for the first time with short hair, I don't resemble a mushroom!

On to the next two months of this adventure.  Then... the recovery and eventual return to work.  I miss my Monday to Friday people and the adult conversations, but I have to admit, I love being home in the quiet house during the day.  I'm reading the third novel I've actually started and finished in May; I've scrapbooked a ton of pages; I've started stockpiling the homemade greeting cards; I've had to take a break from the crocheting because of the numbness in my fingers but for a while I was doing that consistenly; I can still type despite the lack of sensation, so I've even started writing again (read "proof-reading and revising" my Nano-novels.  Maybe 2018 is the year I'll finish a book and start looking to publication.  I have said that before, haven't I?    :)

Oh, and the laundry and basic housework is almost being kept up.  If you know my house, when I'm working it's a weekend slog to catch up.  Now, not so much.

Children are home now... suddenly I can no longer hear myself type.

Logging off,

Wednesday, 9 May 2018

Thoughts and Prayers

Just a thought that I didn't have the guts to say on Facebook (because you all know I'll get attacked for it)...   This group I follow and occasionally comment on is full of very devout Christians who are dealing with cancer.  They continuously post "Praise God, no evidence of disease," or "Praying for your recovery," or "thank God, I'm in remission," or the more dangerous,  "I'm leaving my treatment in God's hands" (ummm... maybe he WANTS you to do chemo, did you ever think of that... he's up in Heaven rolling his eyes while you are taking the natural approach and praying for a miracle?) etc.

So anyway, good for those of unwavering faith.  It's awesome!  Please feel free to pray for your recovery and give all your thanks and credit to whomever you worship if it makes you feel better.  But what I keep thinking, every time they thank God for their recovery, is...

Umm... who do you think gave you cancer in the first place?  If it's his design that you recover, it kind was his design that you suffered, too. Right? Maybe I'm jaded, but it seems a little one sided to credit God for their recovery, and not credit him for the disease in the first place.  You can't have it both ways.  Or can you.  I'm over-thinking this way too much!

I will wisely keep my smart-ass mouth shut on this one.  At least on Facebook where opinions can easily be miscontrued. 

Thursday, 26 April 2018

Conversation with my youngest...

So, this isn't a conversation I expected to have with my five-year-old last night, but she was very serious and not upset or overly anxious. Just curious.  I'm thinking I'm not going to read more into it than I really need to.

Brooklynn:  "Who's going to take care of us if you die?"

Me:  "I'm not going to die!"

Brooklynn:  "Yeah, but if you do, who's going to take care of us?"

Me:  "Well, your Daddy will."

Brooklynn:  "Okay, but who's going to take care of me if Daddy dies?"

Me:  "I will."

Brooklynn:  "What if you both die?"

Me:  "We're not going to both die at the same time!"

Brooklynn:  "You will when you're a hundred!"

Me:  "Okay, fair enough.  But you'll be sixty-four, then.  You will definitely be able to take care of yourself."

Brooklynn:  "No, I won't.  Who will take care of me when you die?"

Me:  "Well, if Daddy and I both die, Uncle Eric and Uncle Vince will become your parents."

Brooklynn:  "WHAT!!!  But they're both boys!  I need a Mommy!"

And then she wandered away, neither perplexed nor upset, just having vocalized her opinion.  Leaving Cory and I to wonder if we're still going to have a 65 year old Brooklynn climbing into our bed in the middle of the night when we're 100 and on death's door.

And leaving me to wonder if I actually ever let Uncle Vincent know that we have a will and it stipulates that my youngest brother is to be appointed guardian of our children.  Did I ever mention that to him? That when he married my brother he was signing on to guardianship of four kids should Cory and I perish in some crazy accident when we turn 100.  Might want to revisit the old will.   Just in case!  Because that's a pretty long-term committment!

Wednesday, 18 April 2018

So funny!

I laughed so hard at this last night, that it felt like I popped a couple of stitches.  But the pain was worth it, because I constantly forget our grocery bags and always feel guilty when the cashier asks, "Do you need bags?"

Tuesday, 17 April 2018

The eve of infusion 5

I've finished four rounds of chemo.  Tomorrow is round 5.  I have to say, I kind of got cocky about this whole chemo thing.  Rounds 1, 2, and 3 were no big deal and the side effects more amusing than uncomfortable.  So when round 4 knocked me on my butt, I had to admit, it's not so much fun!

Not sure if it was something I ate that disagreed with my new, super-efficient, digestive system or if it was the chemo, but after spending almost all day last Monday being a slug on the couch, I woke up to horrible stomach pain and incessant vomiting Tuesday morning.  And sleeping.  Seriously.  I woke up long enough to barf, and then I passed out on the couch again.  I have never slept so much in my life as I did last Tuesday.  So chemo nausea... we can now cross that off the "side effects to experience" list.  I ended up back up at the hospital getting 2 litres of fluids pumped back into me Tuesday night (which I pretty much slept through).  Then I had four days of what I can only describe as a chemo hangover with residual stomach pain. I could barely move by Thursday.  It tapered off by Saturday night, Sunday morning with the help of some lovely T3s.  So, I had two good days this cycle where I felt relatively normal.  One at the beginning, and yesterday.  I'm ready to kiss this cycle goodbye and see what Cycle 5 has in store for me.

On a completely related note, I no longer have a PICC line in my arm.  I am now sporting a "Power Port" (sounds like a superpower, hey? Where's my cape?) which I had surgically installed this morning.  No more allergic reaction to the PICC line and, once my sutures heal, the world is my oyster again. I can get my PORT as wet as I want in the shower without having to worry about infection.  Also I have full use of my right arm again; I can golf, do jumping jacks, and push ups (because we all know that I've been missing out on those activities) and I can lift heavy stuff and pack my purse full of bricks without worry about pulling out the line or clotting it, or whatever might happen. 

Getting the PORT in was actually a relatively easy experience that was done under light sedation.  I woke up when I as getting stitched up, but that didn't even feel all that bad. The worst part was the surgical tape that they ripped off my head at the end of the surgery.  (Why didn't I think to ask them why there was tape on my head for a procedure on my chest?)  And the nurses and doctors are just lovely at our tiny hospital; everyone was very kind and reassuring.  The doctor that did the procedure, was actually the doctor that admitted me to the hospital after sending me for the x-ray and ct-scan last December.  She saved my life.  I was happy to be able to tell her that this morning. 

So now I have this ugly lump of bloody dressings on my shoulder, hiding my new hardware, and I am a little uncomfortable with the sensation now that the freezing has completely worn off.  It feels like my neck (incision 1) is connected to my chest (incision 2) (I think it is, one incision has the port, the other is where they inserted the tube into the vein) and I am having a hard time moving my head separately from my neck and my shoulder.  Sleep might be a bit funky tonight.

Anyway, on to Cycle 5, with a little more trepadition than I had last time. 

Saturday, 31 March 2018

Chemo Hair

So, despite the handout that clearly states that hair loss is "not common" with Folfox chemotherapy, I have experienced some.  If you know me, you know that I can totally afford to experience hair loss.  I have a ton of hair.  So, I'm okay with a little thinning.   However, the thinning made my hair very dry and coarse and tangled.  Every morning for the last two weeks I would comb my hair and tug a knot out where the loosened hair was clinging on to the rest of my hair for dear life.

So... I have cut it.

And yes, of course I regretted it immediately.  It's way too short for my liking.  But as per usual, when you get it cut they spray it down, make it nice and wet, and then two hours after the cut, when it's completely dry, it's shrunk another couple of inches.

I do like it when it's wet, so I guess that's something.

Anyway, best case scenario, I just got rid of the dead, straw-like hair that I've developed.  Worst case scenario, I'm easing my way into hair loss a little at a time.  If it continues to fall out over the next four months, at least it wont' be such a shock to the system, as I've transitioned myself to short hair.

Here's my before and after photos of my new chemo do.
 BEFORE my impulsive "solution" to my brittle hair.
And AFTER - feeling softer and looking a little healthier, but geez, what was I thinking?

It's hair.  It'll grow back.  And I still have lots!

On to round 4 this Wednesday.