Tuesday, February 13, 2018

Thoughts

  • My hair is falling out.  It's almost like sprinkles because of how short it is.  Lots of dark sprinkles, especially in the shower when I wash my hair.  Jamie says it's more chia pet than GI Jane now.  Lots of thinning, no bald patches.  I wish it would just happen already; my scalp will probably feel a lot less tender when it's all gone.
  • I'm really worried that I won't be able to get chemo on Thursday.  My MedOnc explained at my appointment last week that she really looks at the WBC (white blood cells) and Neutrophils Abs numbers when I get my bloodwork each week.  My WBC were 3.1; standard range is 4.0 - 11.0, and my neutrophils were 1.31 last week; standard range is 1.7 - 7.3.  If my neutrophils go below 1.0, I'll have to delay chemo a week to wait for my immune system to catch up.  Chemo is no fun, but it's the thing killing the cancer, so a delay is not good.  It's possible that the number will go up, but it's been on a downward trend so far.  Prayers are appreciated!
  • I've been avoiding public places for the most part, but Jamie and I are going to a 6th Grade Parents Info Meeting tonight.  Yes - Gisèle will be in 6th grade next year!  This meeting is all about middle school registration, choosing of electives, etc.  I don't want to miss it.  Since my immune system is so compromised and flu season is so bad, I have to bring - and possibly wear - a mask.  I'll already be in a hat and wrapped up in layers, and may be adding a mask to the mix.  I'll be feeling very cancer patientish tonight.  I'm not looking forward to that.
  • Chemo is giving me insomnia.  I get 1 good night of sleep each week (thank you, Friday exhaustion!) and am sleepless the rest of the time.  Undereye concealer is my friend.  I'll be talking to my MedOnc/nurses about it soon to see what it safe for me to take for the insomnia.
  • I've always been insulin resistant and can easily tell when my blood sugar is low, but that has disappeared with chemo.  I've been forgetting to eat because I simply haven't felt hungry.  I've had a few cravings, but other than that, I'd be perfectly happy to go without food.  Not a good thing, since my MedOnc said the most important thing for me right now is keeping my calories up.  So I'm eating a brownie with no guilt right now.
  • I have amazing friends and family.  The gifts, cards, prayers, and support I've received have kept my spirits up, and it seems like every time I start to get down, something arrives in the mail, or a message comes across my phone and I'm lifted back up.  Thank you.


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Tuesday, February 6, 2018

A Little Bit Harder

Cycle 3/12 Taxol was a little rougher.  The infusion itself was fine.  Better, actually, since they cut the steroid dose down so I didn't have to deal with that wooziness.  (They also stopped the Benadryl since I haven't reacted negatively to the infusion.)  The rest of this week has followed the same pattern as the first two cycles, but everything has been just a little bit harder.  Jamie looked back at his notes and saw that I took my first Zofran (nausea med) about 30 minutes earlier cycle 2, and then about 45 minutes earlier on cycle 3 than I did on cycle 1.  I had read that the side effects are cumulative, and it's proving to be true.

So far, chemo has been on Thursday, and I'm done around 12:30pm or so.  I feel sick the rest of the day, like my body knows it has been poisoned and can't do anything about it.  Friday is worse, with bone/joint pain and allover aching, a bad headache, weakness, and some nausea and lots of heartburn.  Saturday I'm completely exhausted.  I sleep a lot Friday night, and then take at least one very long nap during the day.  Sunday is better.  I'm tired, but can get out and go to church or a store as long as I spend the rest of the day resting.  Monday through Wednesday are pretty good days; I'm tired but okay.  Cycle 3 followed that pattern, but the bad days were intensified, and the joint/bone pain, headache, and aching has lingered into the good days.

I'm running into some issues with my bloodwork as chemo continues.  This is normal, I know, but still discouraging.  I have bloodwork done an hour before each chemo infusion.  As long as everything - especially my white blood cell count (WBC) looks good, chemo can go ahead.  And chemo needs to go ahead, because that's what is killing the cancer.  And killing the cancer is a very good thing.  Bloodwork is done on Thursdays and results are released to me Monday evenings through the patient portal.  The last 3 weeks, my WBC has been 5.0, then 4.1, then 3.6.  "Standard Range" is 4.0 - 11.0.  I meet with my MedOnc tomorrow, so that's something we'll be talking about.  I don't know what the cutoff is for chemo, but at some point, they won't be able to give me chemo until my WBC goes back up.  There's nothing I can do about it besides rest and stay hydrated, so I'm doing that and praying like crazy.  The other thing concerning on my bloodwork is my ALT level, which has to do with my liver.  "Standard Range" is 7-56.  Mine has been 81, then 222,  then 168.  Again, this is common on chemo (especially Taxol), but concerning to me.  Something else to talk to my MedOnc about.  

I'm of two minds about reviewing my bloodwork each week.  I don't know what all the numbers mean, and researching them doesn't necessarily give me peace of mind.  BUT - I want to know what my test results are; I don't like being ignorant.  So far, this is what is tested routinely each week before chemo:

Bilirubin Indirect
Bilirubin Direct
Bilirubin Total
Protein Total
AST
ALT
Alkaline Phosphatase
Albumin
Calcium
.Glomerular Filtration Rate
Serum Creatinine
Electrolyte Panel  (Sodium Lvl, Potassium Lvl, Chloride, CO2, Anion Gap)
BUN
Glucose Random
Manual Differential  (Neutrophil, Lymphocyte, Monocyte, Eosinophil, Basophil, Neutrophil Abs, Lymphocyte Abs, Monocyte Abs, Eosinophil Abs, Basophil Abs)
.CBC  (WBC, RBC, Hgb, Hct, MCV, MCHC, RDW-SD, RDW-CV, Platelet Count, MPV)
Magnesium

By the end of this all, I'll be an expert in what all of these mean, what my numbers should be - both ideally and just to continue chemo, and whether there's anything I can do to affect them.  For now, I'm just a bit concerned and frustrated.

I'm trying to keep my spirits up, but seeing, in black and white on the test results, what chemo is doing to my body is hard.  I know I just need to concentrate on killing the cancer, but it's hard not to think about how long this road is.  And the long road ahead is only if I'm lucky.  I want that long, hard road of trying to get my health back because that will mean that the chemo/surgery/radiation worked.  But right now it feels rough.  Right now I just want to feel better.



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Tuesday, January 30, 2018

Feeling Like Myself... Kinda

One of my sisters came to visit for the last few days, and yesterday, day 5 after an infusion, I almost felt like myself.  We watched a couple movies together, chatted about things other than cancer, and even made a cake together.  Yes, I was tired; yes, my head feels funny; yes, my appetite is low, but I almost felt normal.  And today, day 6 after the infusion?  I went to Target with a cute hat on, bought myself a latte, and (slowly) browsed the store for fun.  Yes - FUN.  Out of the house!

It's nice to know there can still be good days.



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