Saturday, June 16, 2018

A Family Outing

I still have a few days to go before my next (last!) chemo, so I'm feeling "great!"  To celebrate, we had a family outing today that was completely unrelated to my health.  It was so nice to get out of the house and not be headed to the hospital or a doctor's office!

Out first stop was Ahi Sushi, where we blew through 5 rolls.  Luckily, the kids are fans of both sushi and the use of chopsticks, so a good time was had by all.  My appetite is still low, but I really enjoyed lunch.

Next, we swung by Blendin for coffee, and I got a delicious iced caramel latte.  I finished that while we drove into Houston to the Galleria area, where we went to...

Crate & Barrel!  It had been at least 5 years, probably longer, since we had been there.  We browsed the entire store and picked up a few kitchen items before deciding to finally replace our decade-old water and juice glasses.  Jamie waited at the register for everything to be wrapped up while I watched the kids jubilantly ride the escalators.




After stowing our new glassware in the car, we headed over to Sprinkles and enjoyed cupcakes for a sugar kick before going down the street to...



Central Market, our favorite grocery store to browse.  (Yes, when you're in your 30's you have a favorite grocery store to browse.)  We walked the entire store, giving the kids and Jamie a chance to sample everything on offer.  We picked up some yummy cheeses and a baguette for dinner, chocolate croissants for breakfast, and plenty of other goodies as well.

Pretty peonies at Central Market


Now we're home and I've taken my painkiller and am resting my very tired body.  It was so, so nice to feel normal for the day.  I may not look like I used to and my energy may be low, but at least we're still able to go out and do some fun things as a family.  It reminded me that this cancer treatment stage won't last forever.  Chemo is almost done, surgery is coming up quickly, and then it's time for radiation.  I won't worry about reconstruction for another year and a half from now, but with chemo coming to an end, I'm finally able to see that there will be a time when my life does not revolve around treatment.  I'm ready to be me again - not the cancer patient version of me.  And I will be me again.  Today reminded me of that.  



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Sunday, June 10, 2018

Only One Chemo Left

I'm finally coming out of the fog after my third AC (chemo) a week and a half ago.  It seems like my entire life is chemo/appointments/recovery right now.

It's strange to think about actually finishing up and moving on to the next stage of treatment - surgery.  But that will be happening, which means my thoughts have been turning more and more to my upcoming mastectomy.  The plan right now is for it to be a bilateral/dual mastectomy with port removal.  Speaking more plainly, toward the end of July, both of my breasts will be amputated.

I don't know how much I can do to mentally prepare myself for the way my body will be changed by the surgery.  I'll be coming out of surgery flat (no reconstruction until 9-12 months after radiation), so I'll have a long horizontal scar where each breast used to be.  I'm also having all the lymph nodes removed from my right arm, so I'll have a long scar in my right armpit, and a scar where my port was removed from my chest.

I've had my breasts for a long time.  I'm used to them.  I'm used to the way they look, the way my clothes fit, the way my kids fit against me when we hug.  I like them just the way they are.

You know, except for the cancer.

But before all that, I have one chemo left!  My next appointment is on the 20th, and as long as my counts are good, I'll have my last chemo on June 21st.  Onward! 

BTW - with chemo brain, I post more often on Instagram and Twitter than in longer blog posts.  If you'd like more frequent updates, please follow me there (@trishwhimsy for both)!  


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Thursday, May 17, 2018

Chemo Tips

I have 2 AC infusions left to go.  By the time I recover from my last infusion, I'll have been through about 6 months of chemo.  I'm not looking forward to surgery, radiation, and reconstruction, but I can't wait to finish chemo!

For anyone who'll be going through chemo themselves, I'm hoping this can be helpful to you.  Feel free to email me for more info on specific products I've used. 

These are the things I've found most helpful during this process.  I'm leaving out the things you can't buy, because I think it goes without saying that supportive and loving family and friends are the number one thing you need to make it through.  Though for some people, maybe buying friends is an option.  Who knows?

I didn't use cold caps (which can lessen hair loss), but have used ice socks and ice mitts throughout chemo.  I have had absolutely no neuropathy, and my MedOnc is going to recommend that her other patients use them as well, since I've had such success.  I bought mine on Amazon; I think they're all similar.  Buy extra ice packs so you (or your chemo companion) can switch them out partway through each infusion.  My ice socks & mitts went on about 10 minutes before chemo started (but after the premeds) each time and stayed on until it ended, usually with 1 quick bathroom break.  They're miserable - especially the socks - but it's worth it to not have ended up with neuropathy.

I had someone with me for each infusion, but almost always preferred to zone out with something on my Kindle Fire.  I bought a 10 inch HD version and some good earbuds before starting chemo and it's been a lifesaver.  We have Netflix, Hulu, and Amazon Prime and I caught up on Doctor Who, rewatched (for the third time...) Parks & Rec, watched all of Psych...  I've used it during infusions, but also at home when I feel terrible and need to block out any outside stimulus.  You can also play games or read books on it.  I highly recommend a good tablet for chemo.  We call mine my Chemo Fire to differentiate it from my regular Fire or my Paperwhite.  I like Kindles.

Hard candies!  I found corn-free ones (I'm allergic), but have read that Jolly Ranchers are popular for most ladies.  Anytime my port was flushed when it was accessed, the saline tasted nasty, so the hard candies helped to cover that.  I went through 2-3 each infusion.

Saltines.  Jamie would bring something more substantial for him to eat while we were there, but I was usually feeling pretty cruddy and didn't want an actual meal.  Also, my hands were in huge ice mitts.  So he would feed me saltines so I'd have something in my tummy.  It worked.

A cozy blanket from home.  The kids (with my mom's help) made me a fleece blanket that I have had with me for each infusion.  I'm always cold because of the ice socks/mitts, so having that has been wonderful.  

A big water cup with a handle and flexible straw.  Mine is a hospital maternity gift we've had forever; it holds 32 ounces, so I know if I get through 2 of them a day I'm doing well with my water.  The handle and flexible straw make it easy to drink from whether I'm wearing ice mitts or simply feeling weak and cruddy.

At home, a comfy recliner with a side table.  I spend most of my recovery days in the recliner and the side table is full of my stuff - chapstick, Kleenex (with a trash can next to the table), prescription bottles, etc.  

Next to the recliner - an extension cord with all my chargers plugged into it.  Everything can reach the recliner so I don't have to worry about anything running out of juice.

Chemo hasn't been easy, but I've escaped some of the side effects that I was told I would get.  Granted, I still have 2 infusions left, but things have been "good" so far.  A few things that have helped:

A daily probiotic.  I've been taking one for a while - since before my diagnosis - and I think that has helped me escape the diarrhea and/or constipation that chemo normally causes.  I still get "chemo tummy" the day of an infusion (diarrhea) and take stool softeners to counter my pain killer's constipation side effect, but really haven't had any major issues.  I think the probiotic has really helped with that.  I use the Target (Up & Up) brand of the Culturelle Kids stir-in powder.  (It's corn-free.)

Multiple swishings every day of a baking soda & water solution.  Chemo (especially AC) can cause mouth sores, but I've swished 3-4 times a day with this solution and haven't had that problem.  (about 1 tsp baking soda in 20 oz of water.)  I also use a toothpaste (Tom's) that has both fluoride and baking soda in it.

Dark nail polish.  Other breast cancer patients had said that using dark polish during treatment was a way to protect your nails (a lot of times chemo causes them to fall off, develop sores underneath, etc.), so I got permission from my MedOnc to use it.  I'm alternated OPI Black Onyx and OPI Lincoln Park After Dark and have had no nail issues whatsoever.  I've lost my brows and lashes, but at least I still have pretty nails!

2 ACs to go, and then surgery will be toward the end of July.  I'll just keep trusting God and let Him handle this!



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Thursday, May 3, 2018

Delayed!

I met with my MedOnc yesterday.  Well, technically I met with my nurse and then a PA because my (pregnant) MedOnc had an appointment herself.  I'm hoping she won't be put on bedrest because (selfishly) I don't want to switch to a new doctor partway through my treatment.  And on a truly-I'm-a-nice-person note, I'd hate for anything to be wrong with her pregnancy, so bedrest wouldn't be good thing for her right now.

Nothing to report about the appointment itself.  I had no questions, got a couple medication refills, and then got my bloodwork done to make sure my counts were high enough for this week's chemo - AC #2.  (I wasn't worried since I'd had three weeks for my neutrophils to come up after my first infusion.)

I got a call a couple hours after my appointment, though.  It was the PA, letting me know that my neutrophils were 0.68.  That's the lowest they've ever been, and definitely below the 1.0 needed to get my chemo infusion.  I was told we'd delay for a week and go through the same routine next week - appointment & bloodwork on Wednesday with chemo (hopefully) on Thursday.  I held it together on the phone, and then started crying as soon as I hung up.

For the first time since my diagnosis, I feel like the cancer is winning.

I made it through 12 weeks of Taxol with flying colors - no neuropathy and minimal side effects, with an 82% reduction in the tumors and no delays in chemo.  (The lowest my neutrophils got was the last week - 1.01.)  I came into AC with my expectations high, so this is hard.  It feels like I've been in the ring with cancer, getting blow after blow in, and just got a strong right hook to the jaw, leaving my head spinning.  It's hard not to feel like this week's delay is going to allow the cancer a chance to start growing again.  I'm a cancer patient; my job is to power through treatment and keep killing the cancer.  If I'm not getting treatment, what am I doing?

When AC started as scheduled, I assumed everything would stay on track.  We made all of our summer plans - scheduled surgery, the kids' summer camps, my monthly Xolair shots, and even a couple out-of-town trips - around what I knew the "set in stone" treatment plan would be.  With chemo brain causing white noise to permeate my thoughts, having the calendar set helped me feel a lot more settled.  Now that chemo is being pushed back (which delays my other infusions, which may delay surgery, etc.), everything is up in the air again, and I'm back to realizing how little control over all of this I truly have.

Two things have helped me through this.

First, I have the most amazing family and friends in the world.  I have so many people praying for me and loving me that I know I'll get through this.  And I have an amazing husband and mom who both endured teary phone calls right after the delayed-chemo news, and both calmly told me that this wasn't a big deal - that I was strong, the cancer wasn't going to start growing again, and we'd just play everything by ear and be okay.

Second, Jamie and I have a playlist that has helped me through this entire process.  I've been tweeting out the songs periodically and then listing them on the right side of the blog.  Most, though not all, are by Christian artists, because knowing that God is in control is the most reassuring thing of all.  I like to think I'm in control of my life, but knowing I'm not - since I can make a mess of things so easily - puts me at peace.  He's got this.  That playlist will grow throughout treatment; we currently have about 235 songs on the list and are adding more all the time.  If you're going through anything difficult in your life, listen to some of the songs on that list.

Another week of regaining strength and neutrophils, staying away from anyone remotely sick, and trying not to lose weight.  I can do this!


Partway through chemo, with most of my lashes and brows gone!
(I have eyeliner and brow pencil on here.)


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Thursday, April 26, 2018

Personal Care During Chemo

Since being diagnosed with breast cancer, I've had to change a few things about my personal care routine.  My cancer is ER/PR positive, which means that it feeds on my hormones.  Therefore, eliminating anything I'm using that could mimic hormones is a good idea.  I also feel a lot better about using more natural products since I'm subjecting my body to more and more that is messing it up while treating the cancer.  #poisonwithapurpose

For anyone in the same boat, the most helpful thing I've found is to look for items that are free of parabens.  Here are the products I've been using and liking:


Burt's Bees Hydrating Eye Cream - Nice and light, but hydrating.  My skin is really dry from chemo, and this has been good. 
Acure Day Cream and Night Cream - They both smell good and sink right in - no greasy feeling, but leave my skin nicely moisturized. 
Josie Maran Argan Matchmaker Foundation - This is really more of a tinted moisturizer.  I've worn this for years on top of my other moisturizer and love it.  It evens my skin tone out a little without feeling heavy like a traditional foundation, and has made my skin look the best it has ever looked, pre-chemo, at least.


Native deodorant - I've been using this for over a year and really like it.  It's a deodorant - not an antiperspirant, which took some getting used to.  It smells really good (I use the coconut-vanilla scent) and it's all natural.  (If you switch to an all natural deodorant, give it a few weeks before you  decide to give up on it.  Your body needs to detox from the aluminum-based antiperspirant you've probably been using, and you may smell funky until your body is used to the new stuff!) 
First Aid Beauty Ultra Repair Cream - This is a good intense moisturizer that I dab anywhere on my face that I need a little extra help.
Tom's toothpaste - I've used this for years and years.  I'm making sure to use one with both fluoride and baking soda in it right now since chemo can do a number on your teeth.  I can't stand the taste of artificially flavored toothpastes anymore.  I love Tom's.


Alba Botanica Coconut Rescue Bath & Shower Gel - I switched to this for my showers instead of the Bath & Body Works stuff I used to use (hello parabens!)  It comes in a huge bottle with a pump, is very moisturizing, and has a gentle, non-offensive scent, which is really nice when chemo has made me queasy.  There's a mango one I'd like to try post-chemo. 


Anti-b Antibacterial Shampoo - great for when your hair is falling out and chemo has caused folliculitis, irritating all the follicles and giving you red bumps all over your scalp.  It has a slightly medicinal scent, but the lemon oil in it helps to cover that.  Very soothing for a balding scalp.
Cetaphil Baby Shampoo - Lightly scented and contains calendula; soothing and moisturizing when you're going bald.


Yes to Coconut Cleansing Stick - This has coffee and coconut in it, is moisturizing and scrubby, and is really easy to use in the shower when you're tired but need to scrub your face.
Neutrogena Fresh Foaming Cleanser - I've used this for years.  Very, very gentle.  It's great to use in the shower during chemo, especially, because you can use it gently on your eyes.  When your lashes are falling out it's nice to be able to wash your eyelids and this does a great job.

I've had to switch all of my makeup, as well, but won't go into that.  I've found that the more natural the product, the harder it is to find and the more expensive it is.  But it's worth it to get stuff that will be better for my body and won't help to feed the cancer!




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Wednesday, April 18, 2018

Done With AC #1

It's day 6 after my first AC infusion, and I'm finally feeling somewhat alive.

I don't remember a whole lot from Thursday, day 1.  I had 5 premeds in my IV, all of which had something to do with keeping nausea at bay, and a couple of them made me drowsy.  I nodded off during chemo and slept the rest of the day.  

I felt okay Friday, just sleepy and a little sick.  Saturday was a lot worse, and Sunday even worse than that.  I felt really sick.  I took Zofran around the clock as my MedOnc had instructed, but didn't feel any better until Tuesday, when I was able to skip a dose.  Jamie went back to work today - Wednesday, day 6 - and I took the kids to school.  And then went back to sleep for 4 hours.

On the bright side, I don't have to get the Neulasta injection to boost my white blood cells (WBC), so I don't have to deal with the horrific bone pain that is reported from it.  My infusions are 3 weeks apart, so my MedOnc is okay with waiting to see if my WBC will come up without the injection.  And the Zofran kept the nausea under control well enough that I just felt sick - I didn't actually get sick.

Now I have until May 3rd before my next infusion.  2 weeks to feel better and get my WBC back up!  



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Sunday, April 1, 2018

Holidays When Living With Breast Cancer

Today is Easter.  It has been a good day, filled with our usual traditions - a scavenger hunt for the kids' Easter baskets, an egg hunt in the backyard, a big breakfast and a yummy dinner. 

But breast cancer and chemo have necessitated some changes from previous years.  I had to take several breaks when filling the Easter baskets, because Taxol has left me very, very tired.  Breakfast was a thawed, previously baked pastry because I didn't have the energy/stamina to bake anything fresh, and Jamie made the bacon and eggs.  Dinner is being made mostly by Jamie, and the parts I contributed were done with me seated at the table.  I also had to skip church this morning because my neutrophils last week were at the lowest yet -  1.02 - and I can't risk getting sick.

The biggest change, though, is in my mindset.  It's subtle, but it's definitely there.  It's the faint whisper that there's a chance this could be my last Easter.  My last time to see the kids' excitement over Easter baskets and egg hunts.  My treatment is working - I know that from the ultrasound I had a few weeks ago.  But I also know that cancer is unpredictable and ruthless, and I will be living with this for the rest of my life, whether there is NED (No Evidence of Disease) at the end of this treatment or not.  For the rest of my life, I'll be getting checkups to see if the cancer has metastasized - spread - to other areas of my body.  I'll have to legitimately question every ache and pain in case it's a symptom of the breast cancer spreading to my bones/brain/liver/lungs.

There are so many stories of women who have gone through successful treatment and gone on to live long, healthy lives free of cancer.  And there are equally as many women who have had their cancer return months or years later, and have had their lives cut much too short.

I'm reminding myself every single day of 2 Corinthians 5:7 - "For we walk by faith, not by sight."  Whether this is my last Easter, or just the last one that I'll have to celebrate while undergoing chemo, I know God has a plan for my life.  And he has a plan to take care of Jamie and the kids whether I'm here to try to manage it for him or not.

Please pray that my neutrophils are above 1.0 on Thursday.  If they are, I'll be finishing Taxol Thursday and then hopefully starting AC - the "Red Devil" chemo - the following Thursday.  Here's to killing the cancer and making the most of every moment, month, and year I have left!       



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Wednesday, March 21, 2018

A Visit With Dr. Saleem

I only have 3 Taxol infusions left, so it was time for another visit with my MedOnc, Dr. Saleem.  

It was a good appointment!  We went over my ultrasound results from last week, and I learned that I've had an 80-83% response (so far) to chemo!  That is fantastic news!  She's really pleased with how my body is handling Taxol.  Most of her patients have the same achiness/pain/fatigue that I have, but earlier in the process.  I'm also still showing no signs at all of neuropathy in my hands or feet, which is unusual and really welcome news to us both.  If you have to go through this, I highly recommend using the ice mitts & socks, as they seem to be working for me.

Because my neutrophils were so low last week (1.05), Dr. Saleem had me do my bloodwork today so that I'd know whether or not I even needed to come in tomorrow for chemo.  I got a call about an hour after I left, and my nurse said that I'm a "walking antibiotic" - my neutrophils today were 1.5!  That's the highest they've been in weeks!  Still below the "standard" for a healthy immune system, but really good for me!  Chemo will proceed tomorrow as planned.  That leaves 3 Taxol infusions before I start 12 weeks of AC.

I was able to get out this morning before my appointment (coffee with a friend after school drop-off), then had my appointment and ran to the grocery store afterward.  I'm exhausted now (and still need to pick up the kids later), but it was nice to get out and feel semi-normal.

The face of a "walking antibiotic"

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Monday, March 12, 2018

Taxol is Doing Its Job!

I've had 8 of my 12 Taxol treatments, and my MedOnc was pleased with my progress last time she saw me; she couldn't feel the tumor when doing a physical exam!  One area of concern, though, - to me, not her - is that I've had some pain in my ribs, near the initial tumor site.  I had an ultrasound this afternoon to check on that area, and to see what kind of progress I've made with chemo.

The Methodist Breast Center has the best waiting room music.  Among other songs, they played "Weird Science," "Come On, Eileen," "I Love Rock & Roll," and "It's Raining Men."  They were rocking some Bangles as I left.

Nothing in the pain area showed up on the ultrasound, so that's reassuring.  And in even better news, the ultrasound showed a "significant decrease" in the size of the largest affected lymph node, and my largest (of three) tumor and gone from 3.6cm - on ultrasound - to 1.2cm!  That's fantastic improvement for an ER (estrogen receptor) positive breast cancer on chemo, only 8 infusions in!  

Keep those prayers coming!

I realized in the waiting room that I had dressed in #chemochic - a beanie, button-down, leggings, and comfy boots.  My chemo fuzzy brain is now equating all medical appointments/procedures with chemo infusions.


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Saturday, March 3, 2018

Taxol 7/12

I'm over halfway done with my first chemo, Taxol!  I've done 7 of the 12 infusions, and my body is handling them well so far.  I saw my MedOnc earlier this week, and she's really pleased that I'm showing no signs of neuropathy thus far.  The ice gloves and ice socks, painful as they are, seem to be doing what they're supposed to.  I continue to have fatigue with each infusion, though usually that's better by the last couple days of the week.  I've had headaches and bone/joint pain, but the Tramadol prescription helps with that.  I've had some nausea and heartburn, but the Nexium and Zofran help with that.  And my hair has thinned terribly (and my eyebrows and lashes are starting to go), but the... nope - nothing can help with that!

I've had some pretty bad pain on my right side in my ribs, exactly where I had it when I was diagnosed, and I talked to my MedOnc about that, also.  She's not concerned, but is going to order an ultrasound to check on it.  She did an exam, and can no longer feel the tumors!  That's a great sign that the chemo is working and the tumors are shrinking.  Since the chemo is working, the cancer shouldn't be growing, which means I shouldn't have to worry about it metastasizing right now, so the rib pain shouldn't be bone mets.  It's probably just residual pain from the tumor(s) breaking down.

I'm continuing to lose a tiny bit of weight each week.  Not enough to really concern me, but frustrating all the same when I'm trying to keep my weight up right now.  I simply have had no appetite.  I have had a few cravings, but usually when I finally think of something that sounds good, it's not something that we have on hand.  It's no good craving cinnamon coffee cake when it's 10:30pm, or a chocolate layer cake when you don't have the ingredients on hand.  Sweets have sounded a lot better than anything savory, so you would think I'd be putting on weight, but nope.

Today is Saturday, and I'm exhausted.  I'm in that frustrating stage where I just want something to make me feel better - but nothing sounds good to eat, I'm too tired to do anything, somehow not sleepy, and feel too "sick" to want to do anything.  I'm no fun to be around right now.  But Jamie took the kids to the park and to run some errands, and he's bringing a latte back with him, so I'll be doing better soon.

Halfway done with my first chemo!



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Thursday, February 22, 2018

I Met My RadOnc

I had my first meeting with my Radiation Oncologist (RadOnc) last week.  Luckily, I really liked her, as I'll be seeing her a lot once radiation starts.

This was just an initial consultation, since radiation won't start until chemo and surgery (and possibly some physical therapy) are done.  That timeline probably puts the start of radiation around the end of August.  

I learned that I'll have 6 full weeks of radiation instead of the more standard 4.  I'll have weekends off to give my skin a break, but otherwise it'll be daily Monday through Friday.  Each treatment, other than the dressing/undressing/positioning, will take 10-15 minutes.  I'll be holding my breath for the treatments, 40 seconds at a time, to keep my lungs further from the radiated area. 

Also, Dr. Arzu wants me to be flat for radiation.  This means that after my mastectomy, I can't have expanders placed in preparation for reconstructive surgery.  My SurgOnc, Dr. Miggins, will need to make sure I'm completely flat to give the radiation team the best angle(s) to work with.  That will limit the options I have for reconstruction, but the focus needs to be on getting rid of the cancer at this point.  9-12 months after my skin has healed from radiation, the plastic surgeon who will handle my reconstructive surgery will use the best option available at the time - probably (hopefully) DIEP flap - to construct a new breast (or breasts) for me.

A lot of information to take in.  One more step to kill this cancer!  


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Tuesday, February 20, 2018

Five Infusions In

I've done 5/12 of my Taxol infusions, and am praying that my numbers are good for my sixth one on Thursday.  If I can go ahead and get my chemo on Thursday, I'll be halfway through my Taxol infusions!

I spoke with someone from my MedOnc's office yesterday.  The steroid I've been given with each infusion has made me woozy and nauseous each time.  They've cut the dose in half and tried giving it in a bag instead of pushing it, but it's been rough no matter how it's administered.  Dr. Saleem is going to get back to me on whether she'll try a different steroid on Thursday (assuming I get chemo), or get rid of the steroid altogether.  

In the same phone call, I was told that my WBC were actually looking good.  The number was 3.1 two weeks ago, but had come back up to 3.6 last week (though still lower than "standard"), which means that my body may be figuring out how to recover a bit on its own.  My neutrophils were still trending downward, but the WBC number was a good sign.  Keep praying that things look good on my bloodwork on Thursday.  Uninterrupted chemo is chemo that is still killing the cancer!

I've been a lot more tired with this 5th cycle than I had been before.  It doesn't help that tree pollen is insanely high right now, and I'm allergic to it all.  I'm extra tired and headachy, and it's impossible to know how much is due to chemo and how much is due to allergies.

In happier news, my sisters and my parents have all come to stay and help out at different times, and the abundance of awesome guests, with the promise of more to come, finally prompted me to spruce up the guest room.  I was able to buy a new bedspread at Target, and cheerful curtains and a sunny yellow nightstand are on their way.  And my favorite part was coming up with some easy wall art.  I combined my love of stitching/needlework - wooden hoops - and pretty fabrics and Brandi and I put together this display while she was here:



It makes me smile.  And I hope the sunny yellows and calm greys make our guests smile, too!


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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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Sunday, January 28, 2018

My New 'Do

Today was the day!

We headed over to Jason's place right after church to get my head shaved.  We forgot to get a good before picture, but there's a semi-recent one below.  Jason did a mohawk before the complete shave (at the kids' request), and then took the rest of it off.  

My head feels light and cold now!













(My shirt?  A favorite Shakespeare quote:  "Though she be but little, she is fierce.")



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Friday, January 26, 2018

Hidden Costs of Cancer

I read part of a rant online the other day about people that raise money for medical needs when they have insurance to "pay for it all."  I only read part of the rant because it made me angry and I don't have room in my head for negative thoughts right now.

We have insurance, and we are very blessed to have it.  After we meet our deductible (which happened with my very first day of scans this year), we pay 20% of everything else until we meet our out-of-pocket maximum, which will be any day now when the claims catch up.

What insurance doesn't pay for is all of the hidden costs of cancer.

I can only speak specifically for breast cancer, and more specifically for me and my type of breast cancer, but we've already run into a lot of hidden costs.  And I'm still at the beginning of my treatment.  I'm sure as we get into surgery, radiation, reconstruction surgeries, and hormone therapy there will be many more.

Here are the hidden costs we've run into - so far - with my cancer:

A complete wardrobe overhaul.  I was never a fan of button-up shirts before cancer, but with port surgery and chemo, I wear a lot of (new) soft flannel button-ups.  Along with those, I purchased leggings, cozy sweatpants, and fuzzy socks.  Layers are also important - zip up hoodies and soft cardigans.  All things that I can get on without pulling them over my head since I couldn't raise my arms well after my biopsy or port surgery.  They'll also come in handy after my mastectomy.  I just bought a few loose V-necks, too; I can raise my arms now, but need to leave my healing port area to air out since the skin around it is still peeling due to my adhesive allergy.

New bras - wireless, yet supportive, and front-close.  (See above, re: not raising my arms.  Front close is also much easier when you are too tired to get dressed without a break after chemo.)  Button-up pajamas, also.

I just had my second chemo treatment and my head is feeling tingly/itchy, which is a sign that my hair will be going soon.  I have an appointment in a few days for my awesome hair guy, Jason, to shave my head (there will be photos!), and have purchased and been gifted a hat collection to be prepared for months of baldness.  I also bought an all-natural baby shampoo to use on my scalp to keep it healthy and clean for those months.

Another side effect of chemo is incredibly dry skin.  I stocked up on heavy duty moisturizers  - face and body - to combat the dryness.  I also bought aloe-infused socks.  Radiation will come with its own challenges; I don't know if I'll have prescription creams for that or not.

Chemo can make your nails painfully lift off your fingers/toes and then fall off.  A way to combat this is to use nail strengthener & dark polish along with ice mitts and ice socks during infusions.  Those are not covered by insurance.  We also purchased a small rolling cooler to transport the ice mitts, etc. to the infusions.

My cancer is ER and PR positive, which means that it feeds off of hormones.  I need to switch all of my beauty products to natural ones that will not affect my hormones.  That means eye cream, face lotion, night cream, body wash, shampoo/conditioner, etc.  None of that is covered by insurance.

I'll be attending a Look Good Feel Better class (run by the American Cancer Society) in about a week.  Friends tell me that they encourage you to throw away all of your open makeup due to the bacteria that grows on it.  In a healthy person that bacteria isn't such a big deal, but in someone with a low white blood cell count, that can be a problem.  It will all need to be replaced with new, natural makeup.  I've also had to purchase eyebrow makeup for the first time in my life since my eyebrows (and lashes) will fall out.

Other costs we've incurred:  books for the kids to help them cope with what's going on; a large Kindle and earbuds (and earbud holder) to watch shows during chemo; gas to and from all of the appointments; extra groceries for visitors and for my cravings to keep calories up; a vest since it was easier to get on than a jacket with sleeves; more printer ink to print out forms and test results; and hard candies and snacks for the infusions.

We're learning as we go, and Amazon Prime is more useful than ever right now.  (If you'd like info on any of the products we've found useful, let me know and I'll send you a link.  I don't make any money off of it - I'd just like to be helpful.)

So to everyone who has sent gifts or donated to the GoFundMe (Linked on the right - please share it!), thank you, thank you, thank you.  Your support, encouragement, and prayers are more helpful than you know.  You're enabling us to get through this without panicking when we open the mail.

My 2nd infusion (2/12 Taxol) is done and went fine.  I do need to call my MedOnc to see if they'll lower the steroid dosage for the next infusion, because it makes me woozy.  Otherwise, all is going well.



Port area (left on 1/16, right on 1/24)

The room for my 2nd infusion; a recliner instead of a bed
All set up and watching Dr. Who.  Tired from premeds! 
We added the ice mitts, etc, before the chemo started right after this.

 

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Sunday, January 21, 2018

Chemo Side Effects

Taxol 1/12
Day 4


(Taxol is the chemo I'm currently on.  I've done 1 of the 12 weekly infusions so far, and I'm on day 4, if you count infusion day as day 1.)

I'm finally on the upswing!  Side effects so far haven't been too bad.  I'm told they compound, so with each chemo round it'll get worse, but round 1 has been manageable.  

So far I've had a bad headache, a little bit of nausea (easily controlled with Zofran) and some other tummy issues that I won't go into, bone/joint aches, and weakness.  My port - and adhesive-irritated skin - is still very sore, too, but should heal over the next week or so.  Day 1 the side effects weren't  too bad, though I didn't sleep at all that night because of the steroid.  Day 2 was worse, with the headache bothering me the most.  Day 3, yesterday, I was completely wiped out.  Going from one room to another wore me out, so I spent all day in the recliner.    Today is a lot better, and I've improved throughout the day.  I'm still aching and have a headache, but can move around better than I could before, so I have high hopes for the next few days.  Good timing, too, since Jamie will be back at work tomorrow and I'll be doing the drop-off/pick-up routine with the kids.  

By all accounts, my hair should start coming out sometime between day 10-14, so my awesome stylist, Jason, is ready to shave my head for me a week from today if I need it then.  (Expect to see lots of pictures of the experience.)  If my hair is still hanging on, we can delay the appointment, but I'm assuming things will follow the expected timeline there.  Eyelashes and eyebrows usually hang on a little longer, from what I understand.  They could last a few more weeks or even longer.  We'll see! 

I think I'll handle losing the hair on top of my head better than I will handle losing my lashes and brows.  I think having the hair on my face gone will make me look sick in a way that not even being bald will.  I've always liked my full brows and my long, thick lashes.  Hopefully when they grow back later they'll come back the same.  (Maybe I'll have to look into one of the expensive lash treatments out there to encourage that regrowth when it's time.  Any recommendations?)

Friends and family have been amazing with their support.  We've had so many prayers, donations to the GoFundMe campaign, and supportive messages, and I've received gifts with gift cards, cute hats, and more.  Call me shallow, but having a surprise package arrive at the door when I'm feeling cruddy (physically or emotionally) has cheered me up every time!  So thank you for making this easier than it would be otherwise.  



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Thursday, January 18, 2018

First Chemo

I made it through my first chemo with no allergic reactions!

Jamie and I got to MD Anderson Sugar Land at 8:00 this morning. I had planned my outfit carefully and wore soft leggings, a button-down shirt (for easy port access), and soft Toms boots that I could slip off and on easily. Jamie carried the chemo bag full of supplies and a cooler containing the ice socks and ice mitts (that I'll use to hopefully ward off neuropathy and keep my nails attached.)

Blood was drawn first, this time through my arm since the port was still covered from surgery on Tuesday; in the future they'll use the port. Blood will be drawn before chemo every time to check my counts to be sure I'm healthy enough for the infusion. 

After the blood draw, a nurse removed the dressing from the port and applied numbing cream (something I'll do at home in the future), and my vitals were taken.

My skin doesn't like adhesives.  My face reflects that.

Shortly after, we were shown to my chemo room for the morning.



It hurt when the nurse accessed the port for the first time. I don't know how much of the pain was soreness from the newness of the port and how much was normal port access pain.  Jamie popped a hard candy (corn-free and yummy!) in my mouth to mask the awful taste & smell from the saline flush of the port, and then the nurse started the pre-meds - Benadryl, Pepcid, and a steroid. 

I was all cozy with the OU blanket the kids made me and Dr Who on my Kindle while the pre-meds ran. Right before the chemo infusion started, Jamie got out the ice socks and mitts. I added a hat and a scarf to my ensemble and got iced up. And the socks hurt. The mitts weren't too bad, but the socks were painful.  I felt like my toes were going to fall off.  I left the socks on for about 15 minutes before needing a break. They went back on after a 5 minute (and bathroom trip accompanied by IV pole) break, and were more tolerable then since they were less frozen.

The chemo itself was okay. It took about an hour and then we were suddenly packing up and heading home. I was already feeling very, very tired, but otherwise okay.

We left the hospital around 11:30am. It's 5:30pm now, and I'm feeling flu-like. Very tired, a little dizzy, and achy. My heart has felt a little fast (but not bad), and my throat/nose/sinuses are incredibly dry. My skin is also already drying out, so I need to stay on top of that.  I'm told the side effects will build with each chemo treatment, but at least week 1, day 1 is tolerable so far!

The mitts have ice packs over the fingers, and the socks have ice packs over the toes.


Wednesday, January 17, 2018

Helga

Everything iced over in the early morning hours Tuesday.  School was canceled, but some friends offered to have Gisèle and Miles over while Jamie and I were at the hospital.  We dropped them off and then arrived at the hospital shortly before 8:00am.

Leading up to the port placement, I had a lot of anxiety.  This was the first permanent, visible change that marked me as a cancer patient.  I already knew I had cancer.  I had gone to all the appointments and had all the scans.  But this?  This surgery would result in a daily reminder that I was going through treatment.  This was the beginning of everything.  It was hard not to get emotional leading up to it all.


I got checked in quickly and taken back to interventional radiology.  An IV was started first, and blood was drawn.  The echocardiogram came next.  It was done as a baseline since chemo can be hard on your heart; when I have subsequent scans done, they'll be compared to this one to see if any damage has been done.   After that we waited a while for a lung biopsy to be done on the guy next door before my procedure could start.  

While waiting, a good friend of ours who works at the hospital came by to visit.  She works there in the IR and was able to be present for my port placement.  When I was wheeled back to the procedure room, she was waiting for me.  Chatting with her while everything was being set up around me was a nice distraction.

The actual procedure was no fun.  I was given twilight sedation, so I was completely awake for the entire thing.  (I was hoping it would just knock me out.)  When it started, I felt quite a bit of pain, and had to be given two more doses of the pain medication in my IV before I was numb.  After that, there was a lot of pushing/pulling/pressure in my neck and chest during the fifteen minute procedure.  I tried to just keep my breathing even and not think about was going on. 

Recovery there in the hospital for an hour was a breeze.  I was still numb and relaxed and was ready to go so I could get something to eat and drink and get out of the hospital gown and back into my comfy clothes.  It was on the ride home that the pain started to creep in.  About halfway home, every bump in the road seemed to jar my collarbone.  Once we got home after picking up the kids, I managed to get out of the car, but realized that walking used my chest muscles.  And my chest muscles were angry.

For the last 36 hours or so, I've been either in the armchair or propped up with pillows in bed.  Today has been a little better than yesterday, but I think I'll need every day of the two weeks I was told it takes for full healing.

I've named my port Helga because it hurts like hell.


Feeling pretty good right after port placement



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