Last year I published 10 Prepping for Paleo posts for anyone thinking about trying the Paleo style of eating to clean up their act in the New Year. I thought I'd go ahead and share the links for all of the tips for anyone who (like me 2 years ago) feels like they have tried everything and failed again and again to get rid of stubborn weight (mine was lots and lots of belly fat), reclaim their energy (and not crash at 2pm and 8pm every day!), to stop the aches and pains in their joints or migraines or sinus pressure or whatever ailments were stemming from all the inflammation in your system, to sleep better, to feel better, to have clearing skin and healthier, stronger hair and nails, to eliminate bloat...
I could go on...because it really has been life changing for me and my family...
But I'll let you check it out for yourself!
My New Year's gift to you is a few of the things that made it work for us and the assurance that you can do ANYTHING for 30 days (I felt the difference in 11 days!) and it might just be the thing that works for you!
So, here are the links for each of the 10 posts from last December...pick and choose or read them all.
Happy, Healthy New Year Everyone!
1. Considering Switching to a Paleo Diet?
2. Phase It Out
3. Do Your Research
4. Buddy Up
5. Focus On the Positive!
6. Pantry Purge
7. Journal
8. Meal Plan
9. Shop, Chop and Prep
10. Start!
Feel free to message me through my Wildflower Kitchen Facebook page if you have questions...I do my best to answer within 24 hours. I am NOT a nutritionist or doctor or any other type of "expert" - I just have 2 years under my belt living this new life and cooking for others - so I do know where to find ingredients and how to substitute to make your favorite recipes Paleo friendly (do not ask me how to make a grilled cheese sandwich...just let it go!). I love food, I love to cook, we love to eat out and I never feel deprived...and I have experienced so many wonderful benefits. I am always happy to share what I know.
Good luck. #livehealthyeathappy
Wednesday, December 28, 2016
Tuesday, December 27, 2016
Paleo Roasted Mixed Veggie Soup
Today is the day after the day after Christmas...sigh...I love Christmas and I'm always sad to see it end. But...or should I say BUT, my stomach is beyond ready for this holiday season to be over.
I overindulged.
On sweets.
Cookies (ones that I baked, ones that were gifts, ones that I walked by at a party or event...), pie (the traditional requested Christmas dessert that cannot be ignored), Blue Bell Peppermint Ice Cream (it only comes to town once a year and I refuse to resist...totally my choice, but oh my goodness!), candies (the ones we decorated gingerbread houses with, the ones we bought for gifts and stocking stuffers, the movie candy I totally snuck into the theatre and those darned kisses and hugs that were supposed to be just for baking cookies and snacks) and probably other things I have blocked out.
And presents.
I bought too much...I didn't charge a thing, but I took our checking account all the way to the edge.
And so...I must cleanse...on a budget!
We opted for super-easy "Cozy Christmas" this year. It was just us and we wanted to relax and just spend the day watching movies and playing games. So the menu was pretty make ahead and reheat...perfect, if you ask me.
No big leftover containers of traditional holiday dishes. And not much else to create with.
But my produce drawer had some miscellaneous veggies and I always have chicken stock in my freezer and spices in my cabinet.
And soup (even though it's really pretty warm here in Texas) seemed like just what the doctor ordered to ease my tummy, kick start my post holiday clean eating and use up that produce so I didn't have to grocery shop (or spend) and I wouldn't have to throw anything out (bonus!)
So, this morning, bright and early, I got out everything that I thought would go great in soup, took a quart of chicken stock out of the freezer to thaw and got to work.
I am extremely pleased with the results and am going to share the recipe I used...but remember - you can make this with whatever you have on hand or whatever you like. I think you could also make this a bit quicker and in one pot by sauteing the veggies on the stove top in some avocado or coconut oil (in the pot you plan to boil the soup in) - just cut the veggies into smaller pieces and stir, stir, stir.
I decided to roast the veggies because I love the extra richness and depth of flavor I get when I roast anything. I had a roma tomato, 4 carrots, 2 russet potatoes, one huge onion and a red bell pepper.
I cut the veggies into 1 1/2 - 2 inch pieces (except the tomato, which I halved) and I placed them on a parchment-line baking sheet. I tossed them in about 1 T of avocado oil and added a good sprinkling of sea salt and cracked black pepper.
You will notice the red pepper is not in this picture. It takes less time to roast, so I added it 20 minutes into the roasted process, right when I needed to pull the tray out, rotate it and toss the veggies around to get even cooking and browning.
When I added the red bell pepper, I added a bit more avocado oil and a tiny bit more sea salt and stirred the veggies around. In my oven, whatever is touching the sheet pan browns first and quickest. I love those browned edges...but not burnt! So, if I toss them every 20 minutes (I like to roast the veggies for about an hour at 400°), I get lots of perfectly browned edges and no burned parts!
While the veggies were roasting, I put 32 ounces of chicken stock into a large enamel, heavy bottomed dutch oven to bring to medium heat. I also added a few spices to suit what I was craving...1 tsp of garlic powder, a pinch of red pepper flake and 1 tsp of turmeric. (You could add Italian seasoning and garlic powder or smoked paprika, cayenne and onion powder or dried mustard, garlic powder and oregano...play around with it!) I didn't salt my stock because I had salted the veggies pretty liberally and I always add salt when I am making my stock.
Once the stock has come to temp and the veggies are roasted to your liking (I roasted mine for one hour exactly at 400°) - combine them into the pot with the chicken stock. Then bring the mixture to a boil over medium high heat, then immediately reduce the heat to medium low, mostly cover the pot and simmer for 15 minutes. This helps the flavors to come together and the spices to flavor the entire mixture.
Once the soup is blended - taste for seasoning and add salt or pepper if needed. I did not. My soup was a bit acidic, which surprised me since I only had the one tomato...so, to create the flavor I was looking for, I added 2/3 cup of full-fat coconut milk. I love a creamy flavor and texture in almost any soup and coconut milk does the trick every time. I always turn the heat off before I add the coconut milk...I'm not sure why, I think I read it somewhere...but I always turn the heat off first. Up to you!
This recipe made 2 12-ounce bowls for my son and I for lunch PLUS 32 ounces to pop in the fridge for lunch tomorrow. This is also the perfect soup to freeze. Why toss out perfectly good produce when you can make a big pot of soup and have a nice container of soup for later in your freezer or fridge? It's so nice to come home after a busy day and have a hot bowl of soup without having to actually make it!...Just heat it up!
Here's the specifics of this pot of soup:
32 ounces of chicken stock (make sure you look for organic, sugar free stock if you're buying it)
1 large onion, rough chopped
4 large carrots, peeled and chopped
1 medium roma tomato, halved
2 medium russet potatoes, peeled and chopped
1 red bell pepper, seeded and chopped
1-2 T avocado oil
Sea salt (1 tsp) and cracked black pepper (1/4 tsp) to taste
1 tsp garlic powder
1 tsp turmeric
pinch red pepper flake
2/3 cup full fat organic coconut milk
Nitrate-free, sugar-free bacon, fried and crumbled (about 1/2 slice per bowl)
Toss veggies in avocado oil, salt and pepper and roast at 400° for 1 hour, stirring occasionally
Heat chicken stock over medium heat and add spices (garlic, turmeric, red pepper)
Combine roasted veggies and warmed stock, bring to a boil, reduce heat to medium low, cover with lid, leaving it a bit vented and simmer for 15 minutes.
Blend ingredients with an immersion blender until smooth.
Turn off heat and add coconut milk and blend again.
Serve topped with bacon crumbles
Wednesday, November 9, 2016
Cleaning Up My Act - or at least venting about it!
Today is Day 3 of a CleanLeanMean15 - so 15 days of squeaky clean Paleo eating (minus even the low-glycemic sugars) to get me ready for the holidays. To get my body free of the junk I consumed looking for comfort at the end of chemo and radiation. To just feel better!
I've been a Paleo convert for well over a year and I know exactly what I need to do.
But temptation is temptation and sugar addiction is sugar addiction and gluten withdrawal is gluten withdrawal. So today, I am dealing with the funny, salty taste in my mouth. The teeny, tiny headache and the wandering, sweet treat craving brain. And let's not forget convenience....Paleo eating is not as convenient as a classic American diet of bread and cheese and things deep fried in vegetable and peanut oils. So - I have to plan on top of everything.
But I am determined.
I know the benefits of clean eating first hand.
I already feel lighter and healthier and proud of myself for my resolve.
But...isn't there always a but when we are trying to do what's right and maybe not easy????...of course there is!
But, when I am tired (and I am tired today) and over-booked (and I am over-booked this week) and still fatigued from radiation (sigh...ready to be done with this...), I find myself wanting to quit.
I think it's because this is the very first bout of clean eating I have done without my family. I am alone in this endeavor in my house. So, there are fruit snacks being put into lunches and coconut-sugar-sweetened tea in my fridge and some tempting organic maple syrup calling my name whenever I made barbeque sauce...
So, I have a few Clean Eating buddies that I can text when I feel weak. A phone that allows me to post pictures of the healthy choices I am making. And a Facebook Page that I can use to encourage myself as I encourage others to stick to it until the 15 days are done.
When I first started Paleo eating - I did 30 full days of squeaky clean eating - I was 100% over my cravings by day 11. I was celebrating lots of extra energy and better sleep and no more bloat and clearer skin and shinier hair and let's be honest...a tinier wasteline!
SOOOOO...if that holds true - I only have about a week to go until I am out of the temptation woods. I can do anything for a week. We all can do anything for a week - even giving up drive-thru's and candy bars and soft drinks and coconut sugar in our morning coffee (yes, that is what I miss most of all!!!).
Sorry for the venting, but it helps me get through things and put things in perspective and strengthens my will to do right...yep, I think it worked. I no longer feel like I may sneak out and buy a dozen cupcakes and eat them in my car. I am going to post this and grab some chopped veggies and a touch of unsweetened almond butter and be proud of myself.
Happy Clean Eating!
I've been a Paleo convert for well over a year and I know exactly what I need to do.
But temptation is temptation and sugar addiction is sugar addiction and gluten withdrawal is gluten withdrawal. So today, I am dealing with the funny, salty taste in my mouth. The teeny, tiny headache and the wandering, sweet treat craving brain. And let's not forget convenience....Paleo eating is not as convenient as a classic American diet of bread and cheese and things deep fried in vegetable and peanut oils. So - I have to plan on top of everything.
But I am determined.I know the benefits of clean eating first hand.
I already feel lighter and healthier and proud of myself for my resolve.
But...isn't there always a but when we are trying to do what's right and maybe not easy????...of course there is!
But, when I am tired (and I am tired today) and over-booked (and I am over-booked this week) and still fatigued from radiation (sigh...ready to be done with this...), I find myself wanting to quit.
I think it's because this is the very first bout of clean eating I have done without my family. I am alone in this endeavor in my house. So, there are fruit snacks being put into lunches and coconut-sugar-sweetened tea in my fridge and some tempting organic maple syrup calling my name whenever I made barbeque sauce...
So, I have a few Clean Eating buddies that I can text when I feel weak. A phone that allows me to post pictures of the healthy choices I am making. And a Facebook Page that I can use to encourage myself as I encourage others to stick to it until the 15 days are done.
When I first started Paleo eating - I did 30 full days of squeaky clean eating - I was 100% over my cravings by day 11. I was celebrating lots of extra energy and better sleep and no more bloat and clearer skin and shinier hair and let's be honest...a tinier wasteline!
SOOOOO...if that holds true - I only have about a week to go until I am out of the temptation woods. I can do anything for a week. We all can do anything for a week - even giving up drive-thru's and candy bars and soft drinks and coconut sugar in our morning coffee (yes, that is what I miss most of all!!!).
Sorry for the venting, but it helps me get through things and put things in perspective and strengthens my will to do right...yep, I think it worked. I no longer feel like I may sneak out and buy a dozen cupcakes and eat them in my car. I am going to post this and grab some chopped veggies and a touch of unsweetened almond butter and be proud of myself.
Happy Clean Eating!
Chemo is Cumulative
Chemo is not what I expected. Even after asking all the questions I had typed meticulously into my phone - it was not what I expected.
It was harder and easier than I expected. It was less personal. It wasn't like the movies. I wasn't as scary, but it was terrifying if I let myself think about it too much. And - worst of the worst - it didn't follow my rules!!!!
I took good notes through each session, each week leading up to each session and every hour (or so it seemed) after each infusion so I could prepare for the next one.
Guess what? The days after forgot that I like things organized and planned. The days after forgot that it would be easier for me if they followed a pattern...what the...???
After my second treatment, day 6 after my second treatment, during a call to Krystal The Beautiful Soul (my oncologist's nurse) the light bulb went off when she said...
Chemo is CUMULATIVE.
Ding! Ding! Ding!
So, even though they space the chemo treatments out by 21 days exactly (that's based on the type of treatment I got specifically and the insurance company's policy on payment - NOT about needed recovery time, etc) - it's not because it takes your body 21 days to recover from the last infusion and be ready for the next infusion...It doesn't work like that.
The first treatment - I was out of the weird in about 7 and a half days.
The second treatment - it took me more like 12 days to feel right again.
The third treatment - it took every second of the entire 21 days...and I probably could have used a couple more.
This last treatment - well...I guess we'll see!
I asked some questions, did some reading, did some online research and have decided that the poison or chemo or whatever just sort of soaks up in your system and because it's poison - it also slows down all the stuff that might help get it out of you quicker with each treatment.
So, tired became exhausted. A head cold turned into a 2 week battle with snot and sneezing and a scratchy throat. That tinny, aluminum taste in my mouth turned into the bottom of a bird cage. The emotional, teary side became this weeping, openly sobbing, crazed person who was incapable of watching commercials or those human interest stories during the Olympics...I was terrifying! And my chemo brain has morphed into a blob that was slightly frustrated by not being able to finish sentences to a jiggly, jell-o mass that breaks into hysterical laughter because I'm too tired to care that I can't remember!
I belch in front of my kids and don't care. It happens and I am too full of chemo to waste energy hiding it. Heck, sometimes I don't even say "Excuse me!" I let a swear word slip out in traffic a couple of days ago and to their credit - the kids gasped and then both sent me looks to say "It's okay mom"...until they both started giggling and screaming with laughter. I un-apologetically take midday naps. I get up in the middle of conversations to go to bed. I chomp ice in front of and around the entire world. I don't care. I'm full-up with chemo and need all my extra strength to get it out!
The good news is - every day is about getting better. No more chemo going in, only chemo going out. It's a lot easier to handle the weary, wobbly days when I know they are the last of their kind. They may last longer than the last time, but from here on out - each and every day is going to be better. No more build up. No more poison.
Clearly, chemo kicked my butt...because I started this post nearly 2 months ago...and then, radiation kicked my butt...my chest and armpit, to be specific. And now it's over. I am getting prepared for the next phase...the crazy lady drugs. Not really excited about them, but the deal I made with myself and my children is - whatever it takes.
For those who care to read about chemo and cancer treatment...I'm going to go ahead and post this because it's important information. The idea of cumulative. The idea that cancer treatment doesn't have to and rarely follows any rules. That the reason doctors and nurses and techs say "Everyone's experience is different" is because Everyone's Experience IS Different!
The tinny taste is 100% gone (JOY!), the fatigue lingers, the weeping is waning and I can complete sentences and tasks and thoughts and remember birthdays, etc. All is well in my cancer world - On with the FIGHT!
It was harder and easier than I expected. It was less personal. It wasn't like the movies. I wasn't as scary, but it was terrifying if I let myself think about it too much. And - worst of the worst - it didn't follow my rules!!!!
I took good notes through each session, each week leading up to each session and every hour (or so it seemed) after each infusion so I could prepare for the next one.
Guess what? The days after forgot that I like things organized and planned. The days after forgot that it would be easier for me if they followed a pattern...what the...???
After my second treatment, day 6 after my second treatment, during a call to Krystal The Beautiful Soul (my oncologist's nurse) the light bulb went off when she said...
Chemo is CUMULATIVE.
Ding! Ding! Ding!
So, even though they space the chemo treatments out by 21 days exactly (that's based on the type of treatment I got specifically and the insurance company's policy on payment - NOT about needed recovery time, etc) - it's not because it takes your body 21 days to recover from the last infusion and be ready for the next infusion...It doesn't work like that.
The first treatment - I was out of the weird in about 7 and a half days.
The second treatment - it took me more like 12 days to feel right again.
The third treatment - it took every second of the entire 21 days...and I probably could have used a couple more.
This last treatment - well...I guess we'll see!
I asked some questions, did some reading, did some online research and have decided that the poison or chemo or whatever just sort of soaks up in your system and because it's poison - it also slows down all the stuff that might help get it out of you quicker with each treatment.
So, tired became exhausted. A head cold turned into a 2 week battle with snot and sneezing and a scratchy throat. That tinny, aluminum taste in my mouth turned into the bottom of a bird cage. The emotional, teary side became this weeping, openly sobbing, crazed person who was incapable of watching commercials or those human interest stories during the Olympics...I was terrifying! And my chemo brain has morphed into a blob that was slightly frustrated by not being able to finish sentences to a jiggly, jell-o mass that breaks into hysterical laughter because I'm too tired to care that I can't remember!
I belch in front of my kids and don't care. It happens and I am too full of chemo to waste energy hiding it. Heck, sometimes I don't even say "Excuse me!" I let a swear word slip out in traffic a couple of days ago and to their credit - the kids gasped and then both sent me looks to say "It's okay mom"...until they both started giggling and screaming with laughter. I un-apologetically take midday naps. I get up in the middle of conversations to go to bed. I chomp ice in front of and around the entire world. I don't care. I'm full-up with chemo and need all my extra strength to get it out!
The good news is - every day is about getting better. No more chemo going in, only chemo going out. It's a lot easier to handle the weary, wobbly days when I know they are the last of their kind. They may last longer than the last time, but from here on out - each and every day is going to be better. No more build up. No more poison.
Clearly, chemo kicked my butt...because I started this post nearly 2 months ago...and then, radiation kicked my butt...my chest and armpit, to be specific. And now it's over. I am getting prepared for the next phase...the crazy lady drugs. Not really excited about them, but the deal I made with myself and my children is - whatever it takes.
For those who care to read about chemo and cancer treatment...I'm going to go ahead and post this because it's important information. The idea of cumulative. The idea that cancer treatment doesn't have to and rarely follows any rules. That the reason doctors and nurses and techs say "Everyone's experience is different" is because Everyone's Experience IS Different!
The tinny taste is 100% gone (JOY!), the fatigue lingers, the weeping is waning and I can complete sentences and tasks and thoughts and remember birthdays, etc. All is well in my cancer world - On with the FIGHT!
Sunday, August 28, 2016
Chemo #4...or When CANCER became Cancer...Kind of!
Last week, on Wednesday, August 24, I had my 4th and hopefully, final, chemo infusion. On one hand, it seemed like this had been the longest summer in history and on the other, I couldn't believe how quickly it had flown by.
Chemo and cancer is like that for lots of folks I have talked to. It's overwhelming and in the middle of everything and every decision and thought and emotion, making so many things more difficult and heavier and pricked with that nagging "I have cancer" in the back of your mind. But life goes on, so all the heaviness and difficulty and newness and adjustments are coupled with all the stuff that just has to happen - making time seem short...
...and don't get me started about the obvious "time is short" part of discovering you have cancer...
...and before I knew it - I was making my Countdown To Chemo Checklist and adding things to my calendar to make sure I was prepared for my very last Chemo!
Which brings me to "When CANCER became Cancer".
When this hit my family - everything stopped. So much needed to be learned and heard and appointments were strange and full of words and terminology that we had never even thought of before...we went en masse. We scheduled everything to make sure everyone was available and there and we all had notepads and sharpened pencils and questions prepared and research done.
And then CANCER became our new reality. And life went on.
People are amazing and they care deeply. They want to make sure you have all the time and resources you need when you are going through something like this, but it's not their something. They forget.
Heck, I forget other people's stuff all the time. And I feel terrible - even though no one ever MAKES me feel terrible. People (at least me) are a little bit thankful when you forget their stuff - it makes us feel a little less terrible about forgetting your stuff!
My point in all that is - no one is going to have my cancer at the top of their 'things to remember and schedule around' list. Not my husband's job, not my kids' school or activities or friends or my doctors or anyone but us.
And that means, it's just not practical to think every appointment and chemo week and chemo session and nuelasta shot or prescription pick up is going to be set up to be a family affair.
That first treatment - we were like the Russian Synchronized Swimming Team at this year's Summer Olympics. This time - we were Martin Short and Harry Shearer on SNL...without the nose clip! The first time, everyone had their job, their responsibility and we reviewed and discussed each step and expectation. Things were planned and organized and executed precisely.
This time, well...this time, it was the 4th time. We knew what to do. We didn't "need" lists - we were experts. I've always said, I would have Chemo NAILED by the time I was done with it. And I really did! The Chemo Countdown Checklist. The Chemo Cold Cap Bag. The Chemo Day Kit. The Tricks, the props, the preparation.
But life got busy. The kids went back to school. I am tough.
So, I not only called in my prescriptions, I picked them up. I called in and arranged and drove down and picked up the dry ice by myself...and backed up that terrifying ramp without anyone to encourage or praise me or at least laugh at my pitiful, yet somehow impressive attempt! I had to organize friends to be my Chemo Buddy on the day of. I packed my own bag with my own checklist and it wasn't a big deal. No need to review the list or double check the bag or stare down at the contents and hold hands...I got this!
Truth be told - I did a little bit of thumb-sucking early last week. This was a milestone. A finish line. Something I was about to conquer and (not surprising) I wanted to slay it. And (also not surprising) I was still scared. Chemo for me has been difficult. The day is a blur and the meds make me out of body and I count on my Dream Team to protect me fiercely and make sure there is nothing extra to add to the hard.
But, I am also a realist and know that this had been a long, hard summer and CANCER has gotten in the way of a lot of things. I never dreamed I wouldn't be able to work - who knew the taste bud and exhaustion thing would be what it was for me? I never dreamed there would be days when I just didn't feel safe behind the wheel of my car?...but man, oh man - You're Welcome North Fort Worth!!! Who knew Ninja Fatigue would be so Ninja and so relentless?
I went to my last oncologist appointment alone - because at this point - it's kind of just a formality. I am doing well. I have been praised out loud for my white blood counts and my numbers and the fact that I keep moving and that I am keeping track and asking questions and not needing the narcotics and have gotten control over some of the less-pleasant-to-talk-about parts of chemo through my diet and kicking in the water and chomping ice and water-picking and the gift of being able to rest and not push myself most times through this battle. (I learned a bit of a lesson I will share at some point about pushing myself...but that is story for a different day)
I did as much as I could the day BEFORE chemo to make the last Chemo as effortless and stress-free as possible. Appointments scheduled...check! Hateful shrew dealt with...check! Payment made...check! Radiation conversation started...check!
So, for this last Chemo, CANCER had to become Cancer.
It was Chemo Day, but I still had to set my alarm and get the kiddos moving and make lunches and obsessively remind and make sure everyone got where they needed to be on time, all while trying to organize a Dream Team picture - that was only important to me and not really that important at all. It was something I built up and had to let go of. I have learned that my mental state - my zen, if you will, is the most important thing I pack in my Chemo Kit!
I went over my check list and rifled through my bags and said a quick prayer that I had managed to get everything important (I was thinking CRUCIAL at the time) into the bright pink polka dot bag. I texted my Chemo Buddies and tried to not stress out when we left 6 minutes late (at least I remembered to hug the kids) and tried not to feel sorry for myself when they were more concerned about their new high school schedules than my last chemo - because, have I mentioned, I am tough and they know it! I remembered to take my pre-meds at the almost exact right time before we left. I gave the dogs a belly rub for luck as we walked out the door. We got stuck in traffic, but not STUCK IN TRAFFIC, we got a premium parking spot, I didn't spill anything or drop anything or cry on the way. I carried things this time - because I could and it was necessary and when my sweet husband offered to drop me off and make two trips I told him absolutely not!
My phone was full of beautiful texts and messages and verses and pictures from my wonderful friends and family. My room was ready. There was no drama at the desk. The crushed ice machine was working beautifully. My beautiful friend, Lisa was coming through the doors to hold my hand while Patrick did the mechanics of the Cold Caps. My nurse was Bart, which felt like a wonderful sign of a good last chemo. I did manage to get everything I needed into the Chemo Kit and the set up was effortless. I felt more in control of the appointment than in the past - asking questions and confirming details instead of panicking and leaving it to Patrick or chance ... I mean, we were old pros at this!
But it was weird. Not having my family all there. Asking people who I love for this level of help. To be a part of something pretty raw for me. To show a weakness and fear and ugliness that I would prefer the world not see in quite that bright a light.
As always, those around me were the stars of Chemo #4. Efficient and strong and organized. All I had to do was survive in my zen. To stay in the calmest version of me that I could muster for those nearly 8 hours.
The medications do all sorts of bizarre things to me - I drift in and out of la-la land. I burst into sweat. I freeze from the inside. I make sounds. I require touch. I look ridiculous. I need my heroin...which is really just a square of Hershey's chocolate on my tongue during the first minute of every cold cap...and Yes, that is 18 squares of chocolate...nearly 2 full Hershey bars! Don't tell me sugar isn't a drug! I need my crushed ice, my Sprite, Spot, the yellow heart pillow, the electric blanket, my phone, my socks. I was also armed with my #thebadassissilent t-shirt, a sense of humor, a sense of accomplishment, less fear, a confidence in Patrick's face and the newness of friends at my appointment - like entertaining, but MUCH weirder!
And all of that is probably enough to say that CANCER became Cancer on my last appointment, but the scale-tipper was when my husband actually had to leave before we were done. His hand was infected - and he still managed to do all the manual, difficult work of the Chemo Cold Caps but he needed to see a doctor. The nurses at Texas Oncology all agreed it was important for him to get in to get some antibiotics asap. Well, we wouldn't be finished until most doctors were closing up shop. So, my fabulous friend Lisa babysat me and made me laugh while he made an appointment before her Chemo Dream Team shift ended. And the Amazing Amy got trained to be a Chemo Cold Cap expert in about 10 minutes near the end of her Dream Team duty and I actually managed to get through the end of Chemo #4 as a somewhat active participant.
I have always been pretty out of it during all the appointments. But this time, I helped (Amy may argue this point) pack up and tidy the room and rub my own pressure points to ease the nausea and administer my own Hershey's heroin and hold my own Sprite and adjust my own blankets during the last 2 caps...which was really only about the last hour. I carried things again. I managed to get to and into her car. I got into my own house - I have no idea how or if anyone else was even home, but clearly I made it!
And it was, by far, the easiest of all the treatments. Familiarity, knowledge, experience, support, faith, some luck and an amazing team of family and friends made it easy. And, as thumb-sucky as I was about it not being everyone's number one priority and for the world not stopping for me and my chemo...I think that really added to the ease. People get cancer all the time. The infusion room is always busy. This is a part of so many lives. And the world goes on - at least that's what I'm counting on. And the more normal bits of time you can have in the middle of it all - the less stressful it feels. And for me, less stress equals strength and a much better ability to cope and be tough and adapt and plow through.
And the next day, I got my favorite neighbor, Cheryl, the one who cracks me up and gets me and takes nothing too seriously (unless it's about our kids) drove me to my Nuelasta shot/fluids appointment and was with me when I rang the "I Finished Chemo" bell and I got my graduation T-shirt.
Monday, I go for my radiation consult so I can move into Phase 3 of this Kicking Cancer's Butt Crusade that I am on.
I am weary and wobbly and seem to be experiencing ChemoBrain at a higher level than usual this week, but I rang the bell. I have the shirt. I have no more infusions on my appointment card and the Cold Caps are going back to Dallas on Thursday. So weary and wobbly it is, but DONE WITH CHEMO!
Thank you everyone for being with me throughout this journey and for all of your prayers and support and encouragement - God is good!
Chemo and cancer is like that for lots of folks I have talked to. It's overwhelming and in the middle of everything and every decision and thought and emotion, making so many things more difficult and heavier and pricked with that nagging "I have cancer" in the back of your mind. But life goes on, so all the heaviness and difficulty and newness and adjustments are coupled with all the stuff that just has to happen - making time seem short...
...and don't get me started about the obvious "time is short" part of discovering you have cancer...
...and before I knew it - I was making my Countdown To Chemo Checklist and adding things to my calendar to make sure I was prepared for my very last Chemo!
Which brings me to "When CANCER became Cancer".
When this hit my family - everything stopped. So much needed to be learned and heard and appointments were strange and full of words and terminology that we had never even thought of before...we went en masse. We scheduled everything to make sure everyone was available and there and we all had notepads and sharpened pencils and questions prepared and research done.
And then CANCER became our new reality. And life went on.
People are amazing and they care deeply. They want to make sure you have all the time and resources you need when you are going through something like this, but it's not their something. They forget.
Heck, I forget other people's stuff all the time. And I feel terrible - even though no one ever MAKES me feel terrible. People (at least me) are a little bit thankful when you forget their stuff - it makes us feel a little less terrible about forgetting your stuff!
My point in all that is - no one is going to have my cancer at the top of their 'things to remember and schedule around' list. Not my husband's job, not my kids' school or activities or friends or my doctors or anyone but us.
And that means, it's just not practical to think every appointment and chemo week and chemo session and nuelasta shot or prescription pick up is going to be set up to be a family affair.
That first treatment - we were like the Russian Synchronized Swimming Team at this year's Summer Olympics. This time - we were Martin Short and Harry Shearer on SNL...without the nose clip! The first time, everyone had their job, their responsibility and we reviewed and discussed each step and expectation. Things were planned and organized and executed precisely.
This time, well...this time, it was the 4th time. We knew what to do. We didn't "need" lists - we were experts. I've always said, I would have Chemo NAILED by the time I was done with it. And I really did! The Chemo Countdown Checklist. The Chemo Cold Cap Bag. The Chemo Day Kit. The Tricks, the props, the preparation.
But life got busy. The kids went back to school. I am tough.
So, I not only called in my prescriptions, I picked them up. I called in and arranged and drove down and picked up the dry ice by myself...and backed up that terrifying ramp without anyone to encourage or praise me or at least laugh at my pitiful, yet somehow impressive attempt! I had to organize friends to be my Chemo Buddy on the day of. I packed my own bag with my own checklist and it wasn't a big deal. No need to review the list or double check the bag or stare down at the contents and hold hands...I got this!
Truth be told - I did a little bit of thumb-sucking early last week. This was a milestone. A finish line. Something I was about to conquer and (not surprising) I wanted to slay it. And (also not surprising) I was still scared. Chemo for me has been difficult. The day is a blur and the meds make me out of body and I count on my Dream Team to protect me fiercely and make sure there is nothing extra to add to the hard.
But, I am also a realist and know that this had been a long, hard summer and CANCER has gotten in the way of a lot of things. I never dreamed I wouldn't be able to work - who knew the taste bud and exhaustion thing would be what it was for me? I never dreamed there would be days when I just didn't feel safe behind the wheel of my car?...but man, oh man - You're Welcome North Fort Worth!!! Who knew Ninja Fatigue would be so Ninja and so relentless?
I went to my last oncologist appointment alone - because at this point - it's kind of just a formality. I am doing well. I have been praised out loud for my white blood counts and my numbers and the fact that I keep moving and that I am keeping track and asking questions and not needing the narcotics and have gotten control over some of the less-pleasant-to-talk-about parts of chemo through my diet and kicking in the water and chomping ice and water-picking and the gift of being able to rest and not push myself most times through this battle. (I learned a bit of a lesson I will share at some point about pushing myself...but that is story for a different day)
I did as much as I could the day BEFORE chemo to make the last Chemo as effortless and stress-free as possible. Appointments scheduled...check! Hateful shrew dealt with...check! Payment made...check! Radiation conversation started...check!
So, for this last Chemo, CANCER had to become Cancer.
I went over my check list and rifled through my bags and said a quick prayer that I had managed to get everything important (I was thinking CRUCIAL at the time) into the bright pink polka dot bag. I texted my Chemo Buddies and tried to not stress out when we left 6 minutes late (at least I remembered to hug the kids) and tried not to feel sorry for myself when they were more concerned about their new high school schedules than my last chemo - because, have I mentioned, I am tough and they know it! I remembered to take my pre-meds at the almost exact right time before we left. I gave the dogs a belly rub for luck as we walked out the door. We got stuck in traffic, but not STUCK IN TRAFFIC, we got a premium parking spot, I didn't spill anything or drop anything or cry on the way. I carried things this time - because I could and it was necessary and when my sweet husband offered to drop me off and make two trips I told him absolutely not!
My phone was full of beautiful texts and messages and verses and pictures from my wonderful friends and family. My room was ready. There was no drama at the desk. The crushed ice machine was working beautifully. My beautiful friend, Lisa was coming through the doors to hold my hand while Patrick did the mechanics of the Cold Caps. My nurse was Bart, which felt like a wonderful sign of a good last chemo. I did manage to get everything I needed into the Chemo Kit and the set up was effortless. I felt more in control of the appointment than in the past - asking questions and confirming details instead of panicking and leaving it to Patrick or chance ... I mean, we were old pros at this!
But it was weird. Not having my family all there. Asking people who I love for this level of help. To be a part of something pretty raw for me. To show a weakness and fear and ugliness that I would prefer the world not see in quite that bright a light.
As always, those around me were the stars of Chemo #4. Efficient and strong and organized. All I had to do was survive in my zen. To stay in the calmest version of me that I could muster for those nearly 8 hours.
The medications do all sorts of bizarre things to me - I drift in and out of la-la land. I burst into sweat. I freeze from the inside. I make sounds. I require touch. I look ridiculous. I need my heroin...which is really just a square of Hershey's chocolate on my tongue during the first minute of every cold cap...and Yes, that is 18 squares of chocolate...nearly 2 full Hershey bars! Don't tell me sugar isn't a drug! I need my crushed ice, my Sprite, Spot, the yellow heart pillow, the electric blanket, my phone, my socks. I was also armed with my #thebadassissilent t-shirt, a sense of humor, a sense of accomplishment, less fear, a confidence in Patrick's face and the newness of friends at my appointment - like entertaining, but MUCH weirder!
And all of that is probably enough to say that CANCER became Cancer on my last appointment, but the scale-tipper was when my husband actually had to leave before we were done. His hand was infected - and he still managed to do all the manual, difficult work of the Chemo Cold Caps but he needed to see a doctor. The nurses at Texas Oncology all agreed it was important for him to get in to get some antibiotics asap. Well, we wouldn't be finished until most doctors were closing up shop. So, my fabulous friend Lisa babysat me and made me laugh while he made an appointment before her Chemo Dream Team shift ended. And the Amazing Amy got trained to be a Chemo Cold Cap expert in about 10 minutes near the end of her Dream Team duty and I actually managed to get through the end of Chemo #4 as a somewhat active participant.
I have always been pretty out of it during all the appointments. But this time, I helped (Amy may argue this point) pack up and tidy the room and rub my own pressure points to ease the nausea and administer my own Hershey's heroin and hold my own Sprite and adjust my own blankets during the last 2 caps...which was really only about the last hour. I carried things again. I managed to get to and into her car. I got into my own house - I have no idea how or if anyone else was even home, but clearly I made it!
And it was, by far, the easiest of all the treatments. Familiarity, knowledge, experience, support, faith, some luck and an amazing team of family and friends made it easy. And, as thumb-sucky as I was about it not being everyone's number one priority and for the world not stopping for me and my chemo...I think that really added to the ease. People get cancer all the time. The infusion room is always busy. This is a part of so many lives. And the world goes on - at least that's what I'm counting on. And the more normal bits of time you can have in the middle of it all - the less stressful it feels. And for me, less stress equals strength and a much better ability to cope and be tough and adapt and plow through.
Monday, I go for my radiation consult so I can move into Phase 3 of this Kicking Cancer's Butt Crusade that I am on.
I am weary and wobbly and seem to be experiencing ChemoBrain at a higher level than usual this week, but I rang the bell. I have the shirt. I have no more infusions on my appointment card and the Cold Caps are going back to Dallas on Thursday. So weary and wobbly it is, but DONE WITH CHEMO!
Thank you everyone for being with me throughout this journey and for all of your prayers and support and encouragement - God is good!
Wednesday, August 10, 2016
Chemo for me is a little bit like being pregnant...
It occurred to me this morning as I was frantically racing to my refrigerator to make sweet potato hash before I perished from the sheer desire for sweet potato hash that going through chemo is surprisingly like when I was pregnant.
Something is growing inside me and I pray about it all the time. There is incredible technology out there in the medical fields - whether it be my OB/GYN or my Oncologist team - they have ways to look at things. Ways to give you odds and predictions (always prefaced by the "now there's no guarantee" and "everybody's different"). But when you get down to it - there is no way to know the exact outcome until the time of the exact outcome.
So, I pray.
I asked God to take care of my unborn children. To give me the strength and wisdom to make the best choices for them (especially since I waited until most of my friends were realistically close becoming a grandparent before I had my daughter!). To fill me with positivity and joy and peace so the only energy they would feel was that they would be safe and loved and able to thrive.
Now I pray for many of the same things. Strength and wisdom and peace and positivity....Why does my computer not think Positivity is a word? Has my computer not met me? Has it not been here when I have typed it, had it put the red squiggly line under, basically calling me an idiot, and then seen me ignore and continue to type? Does my computer not understand that if I use it frequently in conversation and can't think of another way to spell it and choose to continue to type it that IT IS A WORD? Anyway, I have prayed a lot during this breast cancer ordeal.
The big difference is I am praying for God to kick the living crap out of this cancer. Not nurture it. Not help it thrive. Help ME thrive. Help cancer die! But still - I feel the same focus and peace and purpose when I pray as I did when I was pregnant. Praying for the inside. The unknown. The hope for tomorrow.
The fatigue...man, talk about something like being pregnant! I could sleep anywhere at a moment's notice when I was expecting. Anywhere! Totally not like me. I can nap occasionally - but usually, I sleep best in my controlled environment in a made bed with an exact positioning of pillows, ceiling fan speed and temperature.
With chemo - BAM! I am out like a light when the fatigue hits. I'm certain it's not pretty, but so many things about chemo aren't pretty that I just don't care. I sleep. In a chair, in the car, in the car-rider line at Central, on the stairs (that was just one time, but I think it speaks to the Ninja fatigue that hits you out of nowhere?)
With pregnancy, I was making a person - it made sense. With chemo, I am filled with poison and trying to kill a demon disease - all very tiring work for this old body.
Which brings me to another similarity...no matter how tough it is physically - it's worth it!
We had quite a journey getting pregnant with our son - our daughter, like everything else she does, decided she wanted to be born and that was that! But with my first pregnancy, we thought we would be those fun dog-parents and fill our lives with other things. And then I got pregnant. At 37. And all the things that happened to my body were weird and I was a hot emotional mess and my ankles took a 7 month vacation and the extra testing because of my age were awful and expensive and at one point, I had to have a wisdom tooth extracted - and I did it in the dentist's office with a local anesthesia and no pain meds after because I didn't want anything to happen to my baby.
Point being - no matter what I needed to do - I did it. No matter how icky or tired or emotional I felt - I pushed through it. Because I was making a person - a person I had been dreaming about for 5 years. My beautiful boy. And then my phenomenal daughter. Whatever nature through at me - I was up to the challenge. I feel certain I whined and probably moaned. And at delivery time - I signed the paper for the epidural, knowing that I wasn't going to have it. I breathed and panted and concentrated and trusted and had two ginormous babies naturally. Because it was worth it.
And no matter what chemo brings to the party - I am up to the challenge. No matter how much I want to lay around - I get up. No matter how tired it makes me - I rest and restart. No matter how hard the nausea pushes me - I sip the ginger tea and nourish my body with fresh fruits and stay strong. If chemo keeps me up all night - I find positive things to fill those hours instead of worrying about what I can't control. And when the next treatment looms - I find my center, ask for help, lean on my family and friends, trust in my ability to do whatever it takes because no matter how hard it is - it's worth the fight.
Amazing? Right? Chemo and Pregnancy - kind of the same, but totally different.
All of this realization brought on by the most obvious similarity - CRAVINGS!
Oh my goodness! I craved Enchiladas with my son for about the first 5 months, then anything spicy - but especially the green chili cheese crisps from Via deLoSantos in Phoenix...it was embarrassing how often we went there so I could not be a crazy person pacing up and down the hall of our tiny home craving that cheese crisp...which I could make, but it wasn't the same! With my daughter - watermelon from start to finish. I have pictures of me at work, on a plane, at the park, at restaurants with little zipper bags of watermelon chunks because it was all I wanted.
I think it's ironic that watermelon was all I wanted with my first and second chemo. I was averaging an entire watermelon every day or two...all by myself! Near the end of chemo #2 came an addiction to stone fruits and now that we are into the second recovery week of Chemo #3 - it's sweet potato hash and eggs. It's crazy. I wake up and can't function until I get my fix. Breakfast, lunch, dinner - who cares...just get me some sweet potato hash and eggs...NOW! Sadly, there is no restaurant in town that makes what I am craving...so I am forced to cook myself and everyone in my house is DONE with this for every meal...so I am kind of on my own. But I am fighting cancer - so they just have to deal with it.
I expect that is why my husband has been so amazing during all this - he got to practice dealing with my particular brand of crazy when I was pregnant with our kiddos. He was ready to deal with Chemo Brain and Chemo Emotion and Chemo Cravings and Ninja Fatigue, because, for me, it is eerily similar to Pregnancy Brain, Pregnancy Emotion and Pregnancy Cravings and Fatigue. Who knew?
Something is growing inside me and I pray about it all the time. There is incredible technology out there in the medical fields - whether it be my OB/GYN or my Oncologist team - they have ways to look at things. Ways to give you odds and predictions (always prefaced by the "now there's no guarantee" and "everybody's different"). But when you get down to it - there is no way to know the exact outcome until the time of the exact outcome.
So, I pray.
I asked God to take care of my unborn children. To give me the strength and wisdom to make the best choices for them (especially since I waited until most of my friends were realistically close becoming a grandparent before I had my daughter!). To fill me with positivity and joy and peace so the only energy they would feel was that they would be safe and loved and able to thrive.
Now I pray for many of the same things. Strength and wisdom and peace and positivity....Why does my computer not think Positivity is a word? Has my computer not met me? Has it not been here when I have typed it, had it put the red squiggly line under, basically calling me an idiot, and then seen me ignore and continue to type? Does my computer not understand that if I use it frequently in conversation and can't think of another way to spell it and choose to continue to type it that IT IS A WORD? Anyway, I have prayed a lot during this breast cancer ordeal.
The big difference is I am praying for God to kick the living crap out of this cancer. Not nurture it. Not help it thrive. Help ME thrive. Help cancer die! But still - I feel the same focus and peace and purpose when I pray as I did when I was pregnant. Praying for the inside. The unknown. The hope for tomorrow.
The fatigue...man, talk about something like being pregnant! I could sleep anywhere at a moment's notice when I was expecting. Anywhere! Totally not like me. I can nap occasionally - but usually, I sleep best in my controlled environment in a made bed with an exact positioning of pillows, ceiling fan speed and temperature.
With chemo - BAM! I am out like a light when the fatigue hits. I'm certain it's not pretty, but so many things about chemo aren't pretty that I just don't care. I sleep. In a chair, in the car, in the car-rider line at Central, on the stairs (that was just one time, but I think it speaks to the Ninja fatigue that hits you out of nowhere?)
With pregnancy, I was making a person - it made sense. With chemo, I am filled with poison and trying to kill a demon disease - all very tiring work for this old body.
Which brings me to another similarity...no matter how tough it is physically - it's worth it!
We had quite a journey getting pregnant with our son - our daughter, like everything else she does, decided she wanted to be born and that was that! But with my first pregnancy, we thought we would be those fun dog-parents and fill our lives with other things. And then I got pregnant. At 37. And all the things that happened to my body were weird and I was a hot emotional mess and my ankles took a 7 month vacation and the extra testing because of my age were awful and expensive and at one point, I had to have a wisdom tooth extracted - and I did it in the dentist's office with a local anesthesia and no pain meds after because I didn't want anything to happen to my baby.
Point being - no matter what I needed to do - I did it. No matter how icky or tired or emotional I felt - I pushed through it. Because I was making a person - a person I had been dreaming about for 5 years. My beautiful boy. And then my phenomenal daughter. Whatever nature through at me - I was up to the challenge. I feel certain I whined and probably moaned. And at delivery time - I signed the paper for the epidural, knowing that I wasn't going to have it. I breathed and panted and concentrated and trusted and had two ginormous babies naturally. Because it was worth it.
And no matter what chemo brings to the party - I am up to the challenge. No matter how much I want to lay around - I get up. No matter how tired it makes me - I rest and restart. No matter how hard the nausea pushes me - I sip the ginger tea and nourish my body with fresh fruits and stay strong. If chemo keeps me up all night - I find positive things to fill those hours instead of worrying about what I can't control. And when the next treatment looms - I find my center, ask for help, lean on my family and friends, trust in my ability to do whatever it takes because no matter how hard it is - it's worth the fight.
Amazing? Right? Chemo and Pregnancy - kind of the same, but totally different.
All of this realization brought on by the most obvious similarity - CRAVINGS!
Oh my goodness! I craved Enchiladas with my son for about the first 5 months, then anything spicy - but especially the green chili cheese crisps from Via deLoSantos in Phoenix...it was embarrassing how often we went there so I could not be a crazy person pacing up and down the hall of our tiny home craving that cheese crisp...which I could make, but it wasn't the same! With my daughter - watermelon from start to finish. I have pictures of me at work, on a plane, at the park, at restaurants with little zipper bags of watermelon chunks because it was all I wanted.
I think it's ironic that watermelon was all I wanted with my first and second chemo. I was averaging an entire watermelon every day or two...all by myself! Near the end of chemo #2 came an addiction to stone fruits and now that we are into the second recovery week of Chemo #3 - it's sweet potato hash and eggs. It's crazy. I wake up and can't function until I get my fix. Breakfast, lunch, dinner - who cares...just get me some sweet potato hash and eggs...NOW! Sadly, there is no restaurant in town that makes what I am craving...so I am forced to cook myself and everyone in my house is DONE with this for every meal...so I am kind of on my own. But I am fighting cancer - so they just have to deal with it.
I expect that is why my husband has been so amazing during all this - he got to practice dealing with my particular brand of crazy when I was pregnant with our kiddos. He was ready to deal with Chemo Brain and Chemo Emotion and Chemo Cravings and Ninja Fatigue, because, for me, it is eerily similar to Pregnancy Brain, Pregnancy Emotion and Pregnancy Cravings and Fatigue. Who knew?
Saturday, August 6, 2016
The Best Laid Plans of Mice and the Chemo #3 Dream Team
I feel certain that Robert Burns was not specifically thinking about my day last Tuesday when he wrote "The Best Laid Plan of Mice and Men", but man that phrase kept running through my brain...along with an alarming number of 4-letter words aimed directly at those who were waylaying my 'best laid plans'.
I am a planner. I should have a shirt or a tattoo or a bumper sticker.
My family knows it, my friends know it, people who follow me in line know it...I am guessing some can just sense it.
And throughout chemo, it has been an asset. As I've written before - I expect to have chemo figured out just when I'm through with it. But after Tuesday, maybe not!
Many of you know through Facebook and Crowdrise, that I had some serious trepidation about my 3rd Chemo treatment. I was so nervous. I think I was realizing how tired I was from our family vacation - which was perfect and restful and full of family and love and fun and laughter and relaxation...but it was a long drive both ways and (along with being a planner) - I like to drive. I am a planning control freak! Maybe it's control of the music or when we stop or the game of "speed buddy"...yeah, it's the "speed buddy" thing. I pick someone with just a bit more speed confidence than I have...say I'm comfortable going 3 miles over the speed limit (don't do the crime if you can't pay the fine!), but a guy in a normal car, not using cruise control, preferably with in-state plates is doing 8 or 9 miles over the speed limit - he or she becomes my "speed buddy". I fall in line and follow them for as long as it works.
Sometimes I have to give a couple of buddies a try - some people are put off by someone following you...obviously following you, but on our trip home - I found 2 perfect speed buddies who I believe took at least an hour off our total trip. I did my best to teach the theory to my son (I know, what kind of mother teaches their child that it's ever okay to do any miles over the posted speed limit...I REALLY wanted to get home, but I also knew how much he wanted to drive for a while...so I let him have at it on the OK Turnpike and taught him "speed buddy"...but used a 3-4 mile over the speed limit guideline...compromise!)
Anyway, I was tired from the drive, the unpacking, the resettling into our lives and the knowledge that in less than 3 days, I was back in the chemo treatment room.
I thought that was why I was nervous.
I think I was wrong about that!
The Universe was sending me a message to find my calm, call in my prayer warriors, muster my yoga breath, surround myself with comfort and my dream team because the wheels were about to come off my Chemo #3 Bus!
To all the amazing folks who checked in, sent a prayer or message or emoji or post - God Bless You! My feet didn't touch the ground as I was checking in I was so lifted!
Sadly, it wasn't long after my harmless signing in that I almost hit my knees.
I got there and went to the "wrong" desk. In my mind, it was doctor, labs, treatment. So I went to the doctor's entrance (mind you, they all connect to the same places...so why this is even an option, I have no idea). I was told it was labs, doctor, treatment and no, I couldn't just walk back from this side, I had to check in at the other side.
And then the dreaded "Were you aware that you have a balance due of...." That was all she got out of her mouth.
The very first time I went for chemo, they drug me into the finance office and told me that my portion (my 10% of each chemo) would be just over or under $1000, depending on the pre-meds for that treatment...we have moved solidly into the over $1000 because I require the anti-anxiety meds and so does everyone else in my circle (for me, not them!!!). Anyway, it's a personal flaw of mine to take everything to heart, but that's who I am, so I was not only scared to pieces about my first chemo, I was so overwhelmed and embarrassed about my inability to pay in full this surprising amount for 4 total treatments that I did not handle it well - which I am certain played a significant part in my total come-apart during Chemo #1.
So, as a planner, I did what I thought was the proper thing. I contacted the nurse in charge (the amazing Krystal, the Beautiful Soul) and told her of my experience and asked if they could make a note on my screen/chart/profile/whatever to NOT approach me about finances until the next day after chemo when I was going to be in anyway for my Nuelasta shot and to let them know I would be making payments, not paying in full.
Chemo #2 - no problem. Not a mention of financial responsibility or burden, not a scouring face at my empty checking account, no judgement or tsk, tsking. Just a smooth sail into Chemo #2.
So, thinking I had it handled, aka planned, I was surprised when the receptionist asked me about my balance. So, I explained to her that I had asked to handle finances the day after chemo and she was nice enough to put a note on my screen and I even heard her tell the shrew at the other check-in desk NOT to approach me about my balance and that I would be making a partial payment when I returned on Wednesday. I mean, seriously, we had barely gotten back into town...I hadn't begun to divvy up what we had to give to who we still owe.
So, off I went, to the other side to check in and breeze back to have my lab work done, before seeing the oncologist and embarking on Chemo #3 treatment and don't you know...she asked me about my balance!
Not directly. She looked up from her desk, sort of smiled and asked "Are you Lisa?" in a louder-than-necessary voice (should have been my first tip-off) and then her eyes went directly to an unopened folder or the top of her desk or somewhere downcast away from me and she she mumbled "I understand (insert name of receptionist from the other side here) let you know you have a balance of.............................." and I lost my mind!
Not one of those quick, got-it-under-control mind losing experiences...it was a full on WTF (sorry) implodes.
My eyes went wild. My voice went up (I know this because people looked away and peaked around corners) and my outrage made my entire body shake.
I couldn't believe it.
I explained to her that I personally heard the other receptionist ask her nicely to not bring this up and that I was aware and that I was planning on taking care of it the very next day.
And, bless her heart, she didn't have the good sense to let it go.
She wanted to be right.
She wanted to challenge me...the clearly crazy person across the counter from her. Poor thing.
I would never survive in a physical fight - even at my best - unless maybe someone was messing with my kids...but you know what I mean. I'm not daunting. Or ruthless. Or aggressive. Physically.
But I have always been blessed with an ability to verbally take down almost anyone. And I did.
I am not proud of it. I actually walked away because I could sense, even in my rage, how outmatched she was and I hate to ever be cruel.
And that's exactly where I was going. I did call her a liar at one point and the Capital B made it onto my lips (for the obvious B-word that she chose to be), but I think I stopped it before it came all the way out. For all I know she was already in the back room behind the magical locked automatic doors by the time I was headed out. I would have been! The old man sitting by the harmless unlocked entry door that I was raging towards caught the capital B and thought it was hysterical. Glad to know I made his morning.
By the time I made it back into the doctor's reception area, I was in tears, red-faced, couldn't breathe and so angry that I had worked all night and morning to find my center and it was all blown up. And I let myself get angry and I hate that.
I am certain she has a list of things she has to do - and at the top of that list is making sure people pay their bills or know about their bills or at least have to feel guilty about their bills so they are more likely to pay their bills. I am also certain she sees hundreds of people every day (there were 67 of us in for treatment that fateful Tuesday...I hope the other 66 were calmer!)
Anyway, she should have been kinder. Smarter. More caring. I should have ignored her. Been more insistent on going through the taboo doors and not going to the other side...I knew something bad was over there....
But I hate to be cruel and I hate to lose my cool. But I did both! Big time!
It took a while, but I finally got back to see the doctor. The poor nurse that had to put in my numbers was terrified. Talk about peaking around corners...when I came back across to the doctor's side, my control was pretty much gone. I was scolding and horrified and outraged and not the least bit quiet. Even my sweet family was averting their eyes and pretending to look at their phones and arrange things in the chemo kit so they didn't have to look directly at me!
But, eventually, it was all back to normal...or so I thought.
I had my appointment with my oncologist. Things going right on track. Next steps. Expectations. Double checking pre-meds and prescription refills. We were off-track time-wise, but I was getting back to my zen, happy place.
Off we went - back to the ONLY private room in the entire infusion area - reserved for those who are doing chemo-cap therapy or who had a severe reaction or fear or whatever during their treatment.
When I turned the corner, I noticed this look on my husband's face - I honestly thought they were turning me away because I was so awful earlier. But no - it was worse!
They had given my private room to someone else. They actually moved all our things out of the room (that we had already set up) and pushed them over into a corner! Right out in the middle of everyone!
ARE YOU KIDDING ME??????
This was clearly a dream...nightmare...whatever. No way this was actually happening. No way! I was just back at zen. Just back to mentally tough enough to endure 8 hours of -35° C ice hats on my head and severe nausea and exhaustion and the crazy surging cold of T/C treatment. No way!
But yes, it had happened.
I suppose everyone goes through a lot of steps to get ready for chemo. But all I really cared about were the steps we had gone through. The time off that had to be requested for my husband and son. The rides for my daughter. The mental preparation. The packing. The planning. The understanding that if we followed our part of the bargain, the chemo folks and oncologists and nurses and administrators and even the financial people would do what they had said.
It was bad.
It was pretty obvious they knew they had probably made a mistake, but somewhere deep inside, they were hoping I would be more understanding. Or quiet. Or agreeable. The poor messenger nurse tried. And I sent her off to find a supervisor - who didn't have the guts to come out on his own (I had a few select words for him) and sent her back to deal with me. What a baby!
I could see they all knew what they did was wrong, but it was too late. Someone else was in my room and no one was going to deal with it or take responsibility for it or fix it.
I panicked. We were running out of time to finish the treatment. I knew I was unable to go through this sitting in a Barco-lounger in the middle of a room (they did offer a white sheer screen thingy, but please!) and it would be almost impossible to get my dream team another day off that soon after vacation to be with me and this is not a solo gig.
I can't explain the bargaining and the conversation and questioning and back and forth that went on. And my complete surprise that as open and honest as I have been, my note taking and attention to detail and reputation as a planner, that they would actually say out loud...."I know you had your things set up in there, but they were ready to go, so we moved you out."
Without a warning or a word or the option to GET IN THERE and stake my claim. I respect doctors, but I respect chemo more. I would have walked right out on my oncologist (who I adore) to have my room. I cannot express how important routine has become in getting through chemo days. And part of that routine is having my room, my privacy, the ability to make the horrible little noises I can't stop during the first 5 minutes of each cold cap. Having a safe place where I don't have to put on a happy face or be upbeat or smile or buck up. What was I going to do?
In the end, the other family (who had moved their appointment which is why we were both there on the same day) moved out into the main room and used the little sheer screen and I got my room. The room we were told we had reserved. There was some back-and-forth about whether that was ever "really" said...which disappointed me at a pretty deep level, especially when I was able to quote conversations where I was clearly led to believe that YES, we had an appointment for that private room.
Except responsibility people! Even when you screw up - unintentional as it might be. Don't make the crazy lady with cancer and tons of fear feel like she is losing her mind more that she actually is. Just apologize and make it right.
I had to see the husband of the lady we displaced while I was trying to get myself back together and I lost it. I felt so bad. I didn't want her put out of her comfort zone either. I wanted someone who allowed this to happen to magically fix it so no one was put out.
That's not how it works in the real world.
Someone is inconvenienced. Or moved. Or made less comfortable.
And, maybe for the first time in my life - I made it someone else.
I always give. I always let someone go in line before me. I will take the next cab or let them have the corner piece of cake (that's a big deal for me, just so you know...I adore frosting!) or use the good goggles.
But not Tuesday. I know my limits. Chemo is tougher than I ever imagined and in order to survive, I chose me. I let them move out. I moved in. I kept my head down and felt terrible, but I took the room.
I also switched my next appointment so they wouldn't have to. It felt like the least I could do. I have no idea if they appreciate it or even know, but I know. And I feel a little better about it.
It meant some juggling for us, but nothing that we couldn't handle with 3 weeks notice. And it felt like the right thing to do.
I made it through Chemo #3 in pretty good shape. There were a few other glitches - I mean seriously, people steered clear of us! Usually, there are 3 or 4 people who come in to check and offer and get and peer...not Tuesday. It was just us. One brave nurse and no one else...and I'm sure she drew the short straw.
Krystal the Beautiful Soul checked in until we got the next appointment conflict ironed out- because no one wants to have to go through that again!, and then even she disappeared! How nice to be infamous!
But we made it. My family got to work and got me through Chemo #3.
The infusion room was all but empty by the time we left for the day, coolers and bags and a big stuffed dog in tow. No one looked directly at me - which was fine - I prefer it that way when I am vulnerable.
I have no idea what was said about me or my situation or my response. I'd like to think someone recognized a teachable moment...but who knows? Not me. And I can't make that my concern. But, as a planner, I have put notifications into my calendar to call ahead and confirm my expectations and my private room and my payment schedule.
When I did return on Wednesday for my shot, I got in line at the "other" reception desk (away from the shrew), we did not make eye contact. She was smart enough to not try and help me. I paid what I could and the appointment went off without a hitch. At one point I thought I saw her consider asking "can I help you ma'am?", and decided not to. There was no waiting on her side, but I was weary from the day before and decided it would be incredibly unwise to even chance eye contact with her. My son thought it might have made the day more interesting, but he's a teenager and easily amused by things that shouldn't be amusing!
And now we are in #chemoweek and all that goes with it. Eating fruit, chomping ice, taking naps, taking tiny walks, getting in the pool when I have a chauffeur and watching the Olympics! What a wonderful coincidence - finally an excuse to sit and watch the Olympics without guilt - all of it!
I believe I hear the swim trials calling my name right now...thanks for listening to my rant...Chemo #3 really was quite a day!
I am a planner. I should have a shirt or a tattoo or a bumper sticker.
My family knows it, my friends know it, people who follow me in line know it...I am guessing some can just sense it.
And throughout chemo, it has been an asset. As I've written before - I expect to have chemo figured out just when I'm through with it. But after Tuesday, maybe not!
Many of you know through Facebook and Crowdrise, that I had some serious trepidation about my 3rd Chemo treatment. I was so nervous. I think I was realizing how tired I was from our family vacation - which was perfect and restful and full of family and love and fun and laughter and relaxation...but it was a long drive both ways and (along with being a planner) - I like to drive. I am a planning control freak! Maybe it's control of the music or when we stop or the game of "speed buddy"...yeah, it's the "speed buddy" thing. I pick someone with just a bit more speed confidence than I have...say I'm comfortable going 3 miles over the speed limit (don't do the crime if you can't pay the fine!), but a guy in a normal car, not using cruise control, preferably with in-state plates is doing 8 or 9 miles over the speed limit - he or she becomes my "speed buddy". I fall in line and follow them for as long as it works.
Sometimes I have to give a couple of buddies a try - some people are put off by someone following you...obviously following you, but on our trip home - I found 2 perfect speed buddies who I believe took at least an hour off our total trip. I did my best to teach the theory to my son (I know, what kind of mother teaches their child that it's ever okay to do any miles over the posted speed limit...I REALLY wanted to get home, but I also knew how much he wanted to drive for a while...so I let him have at it on the OK Turnpike and taught him "speed buddy"...but used a 3-4 mile over the speed limit guideline...compromise!)
Anyway, I was tired from the drive, the unpacking, the resettling into our lives and the knowledge that in less than 3 days, I was back in the chemo treatment room.
I thought that was why I was nervous.
I think I was wrong about that!
 | |
| Chemo #3 Dream Team |
To all the amazing folks who checked in, sent a prayer or message or emoji or post - God Bless You! My feet didn't touch the ground as I was checking in I was so lifted!
Sadly, it wasn't long after my harmless signing in that I almost hit my knees.
I got there and went to the "wrong" desk. In my mind, it was doctor, labs, treatment. So I went to the doctor's entrance (mind you, they all connect to the same places...so why this is even an option, I have no idea). I was told it was labs, doctor, treatment and no, I couldn't just walk back from this side, I had to check in at the other side.
And then the dreaded "Were you aware that you have a balance due of...." That was all she got out of her mouth.
The very first time I went for chemo, they drug me into the finance office and told me that my portion (my 10% of each chemo) would be just over or under $1000, depending on the pre-meds for that treatment...we have moved solidly into the over $1000 because I require the anti-anxiety meds and so does everyone else in my circle (for me, not them!!!). Anyway, it's a personal flaw of mine to take everything to heart, but that's who I am, so I was not only scared to pieces about my first chemo, I was so overwhelmed and embarrassed about my inability to pay in full this surprising amount for 4 total treatments that I did not handle it well - which I am certain played a significant part in my total come-apart during Chemo #1.
So, as a planner, I did what I thought was the proper thing. I contacted the nurse in charge (the amazing Krystal, the Beautiful Soul) and told her of my experience and asked if they could make a note on my screen/chart/profile/whatever to NOT approach me about finances until the next day after chemo when I was going to be in anyway for my Nuelasta shot and to let them know I would be making payments, not paying in full.
Chemo #2 - no problem. Not a mention of financial responsibility or burden, not a scouring face at my empty checking account, no judgement or tsk, tsking. Just a smooth sail into Chemo #2.
So, thinking I had it handled, aka planned, I was surprised when the receptionist asked me about my balance. So, I explained to her that I had asked to handle finances the day after chemo and she was nice enough to put a note on my screen and I even heard her tell the shrew at the other check-in desk NOT to approach me about my balance and that I would be making a partial payment when I returned on Wednesday. I mean, seriously, we had barely gotten back into town...I hadn't begun to divvy up what we had to give to who we still owe.
So, off I went, to the other side to check in and breeze back to have my lab work done, before seeing the oncologist and embarking on Chemo #3 treatment and don't you know...she asked me about my balance!
Not directly. She looked up from her desk, sort of smiled and asked "Are you Lisa?" in a louder-than-necessary voice (should have been my first tip-off) and then her eyes went directly to an unopened folder or the top of her desk or somewhere downcast away from me and she she mumbled "I understand (insert name of receptionist from the other side here) let you know you have a balance of.............................." and I lost my mind!
Not one of those quick, got-it-under-control mind losing experiences...it was a full on WTF (sorry) implodes.
My eyes went wild. My voice went up (I know this because people looked away and peaked around corners) and my outrage made my entire body shake.
I couldn't believe it.
I explained to her that I personally heard the other receptionist ask her nicely to not bring this up and that I was aware and that I was planning on taking care of it the very next day.
And, bless her heart, she didn't have the good sense to let it go.
She wanted to be right.
She wanted to challenge me...the clearly crazy person across the counter from her. Poor thing.
I would never survive in a physical fight - even at my best - unless maybe someone was messing with my kids...but you know what I mean. I'm not daunting. Or ruthless. Or aggressive. Physically.
But I have always been blessed with an ability to verbally take down almost anyone. And I did.
I am not proud of it. I actually walked away because I could sense, even in my rage, how outmatched she was and I hate to ever be cruel.
And that's exactly where I was going. I did call her a liar at one point and the Capital B made it onto my lips (for the obvious B-word that she chose to be), but I think I stopped it before it came all the way out. For all I know she was already in the back room behind the magical locked automatic doors by the time I was headed out. I would have been! The old man sitting by the harmless unlocked entry door that I was raging towards caught the capital B and thought it was hysterical. Glad to know I made his morning.
By the time I made it back into the doctor's reception area, I was in tears, red-faced, couldn't breathe and so angry that I had worked all night and morning to find my center and it was all blown up. And I let myself get angry and I hate that.
I am certain she has a list of things she has to do - and at the top of that list is making sure people pay their bills or know about their bills or at least have to feel guilty about their bills so they are more likely to pay their bills. I am also certain she sees hundreds of people every day (there were 67 of us in for treatment that fateful Tuesday...I hope the other 66 were calmer!)
Anyway, she should have been kinder. Smarter. More caring. I should have ignored her. Been more insistent on going through the taboo doors and not going to the other side...I knew something bad was over there....
But I hate to be cruel and I hate to lose my cool. But I did both! Big time!
It took a while, but I finally got back to see the doctor. The poor nurse that had to put in my numbers was terrified. Talk about peaking around corners...when I came back across to the doctor's side, my control was pretty much gone. I was scolding and horrified and outraged and not the least bit quiet. Even my sweet family was averting their eyes and pretending to look at their phones and arrange things in the chemo kit so they didn't have to look directly at me!
But, eventually, it was all back to normal...or so I thought.
I had my appointment with my oncologist. Things going right on track. Next steps. Expectations. Double checking pre-meds and prescription refills. We were off-track time-wise, but I was getting back to my zen, happy place.
Off we went - back to the ONLY private room in the entire infusion area - reserved for those who are doing chemo-cap therapy or who had a severe reaction or fear or whatever during their treatment.
When I turned the corner, I noticed this look on my husband's face - I honestly thought they were turning me away because I was so awful earlier. But no - it was worse!
They had given my private room to someone else. They actually moved all our things out of the room (that we had already set up) and pushed them over into a corner! Right out in the middle of everyone!
ARE YOU KIDDING ME??????
This was clearly a dream...nightmare...whatever. No way this was actually happening. No way! I was just back at zen. Just back to mentally tough enough to endure 8 hours of -35° C ice hats on my head and severe nausea and exhaustion and the crazy surging cold of T/C treatment. No way!
But yes, it had happened.
I suppose everyone goes through a lot of steps to get ready for chemo. But all I really cared about were the steps we had gone through. The time off that had to be requested for my husband and son. The rides for my daughter. The mental preparation. The packing. The planning. The understanding that if we followed our part of the bargain, the chemo folks and oncologists and nurses and administrators and even the financial people would do what they had said.
It was bad.
It was pretty obvious they knew they had probably made a mistake, but somewhere deep inside, they were hoping I would be more understanding. Or quiet. Or agreeable. The poor messenger nurse tried. And I sent her off to find a supervisor - who didn't have the guts to come out on his own (I had a few select words for him) and sent her back to deal with me. What a baby!
I could see they all knew what they did was wrong, but it was too late. Someone else was in my room and no one was going to deal with it or take responsibility for it or fix it.
I panicked. We were running out of time to finish the treatment. I knew I was unable to go through this sitting in a Barco-lounger in the middle of a room (they did offer a white sheer screen thingy, but please!) and it would be almost impossible to get my dream team another day off that soon after vacation to be with me and this is not a solo gig.
I can't explain the bargaining and the conversation and questioning and back and forth that went on. And my complete surprise that as open and honest as I have been, my note taking and attention to detail and reputation as a planner, that they would actually say out loud...."I know you had your things set up in there, but they were ready to go, so we moved you out."
Without a warning or a word or the option to GET IN THERE and stake my claim. I respect doctors, but I respect chemo more. I would have walked right out on my oncologist (who I adore) to have my room. I cannot express how important routine has become in getting through chemo days. And part of that routine is having my room, my privacy, the ability to make the horrible little noises I can't stop during the first 5 minutes of each cold cap. Having a safe place where I don't have to put on a happy face or be upbeat or smile or buck up. What was I going to do?
In the end, the other family (who had moved their appointment which is why we were both there on the same day) moved out into the main room and used the little sheer screen and I got my room. The room we were told we had reserved. There was some back-and-forth about whether that was ever "really" said...which disappointed me at a pretty deep level, especially when I was able to quote conversations where I was clearly led to believe that YES, we had an appointment for that private room.
Except responsibility people! Even when you screw up - unintentional as it might be. Don't make the crazy lady with cancer and tons of fear feel like she is losing her mind more that she actually is. Just apologize and make it right.
I had to see the husband of the lady we displaced while I was trying to get myself back together and I lost it. I felt so bad. I didn't want her put out of her comfort zone either. I wanted someone who allowed this to happen to magically fix it so no one was put out.
That's not how it works in the real world.
Someone is inconvenienced. Or moved. Or made less comfortable.
And, maybe for the first time in my life - I made it someone else.
I always give. I always let someone go in line before me. I will take the next cab or let them have the corner piece of cake (that's a big deal for me, just so you know...I adore frosting!) or use the good goggles.
But not Tuesday. I know my limits. Chemo is tougher than I ever imagined and in order to survive, I chose me. I let them move out. I moved in. I kept my head down and felt terrible, but I took the room.
I also switched my next appointment so they wouldn't have to. It felt like the least I could do. I have no idea if they appreciate it or even know, but I know. And I feel a little better about it.
It meant some juggling for us, but nothing that we couldn't handle with 3 weeks notice. And it felt like the right thing to do.
I made it through Chemo #3 in pretty good shape. There were a few other glitches - I mean seriously, people steered clear of us! Usually, there are 3 or 4 people who come in to check and offer and get and peer...not Tuesday. It was just us. One brave nurse and no one else...and I'm sure she drew the short straw.
Krystal the Beautiful Soul checked in until we got the next appointment conflict ironed out- because no one wants to have to go through that again!, and then even she disappeared! How nice to be infamous!
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| Ice caps & a Jiffy Pop Hat |
The infusion room was all but empty by the time we left for the day, coolers and bags and a big stuffed dog in tow. No one looked directly at me - which was fine - I prefer it that way when I am vulnerable.
I have no idea what was said about me or my situation or my response. I'd like to think someone recognized a teachable moment...but who knows? Not me. And I can't make that my concern. But, as a planner, I have put notifications into my calendar to call ahead and confirm my expectations and my private room and my payment schedule.
When I did return on Wednesday for my shot, I got in line at the "other" reception desk (away from the shrew), we did not make eye contact. She was smart enough to not try and help me. I paid what I could and the appointment went off without a hitch. At one point I thought I saw her consider asking "can I help you ma'am?", and decided not to. There was no waiting on her side, but I was weary from the day before and decided it would be incredibly unwise to even chance eye contact with her. My son thought it might have made the day more interesting, but he's a teenager and easily amused by things that shouldn't be amusing!
 | |
| Daisy, the Medicine Dog |
I believe I hear the swim trials calling my name right now...thanks for listening to my rant...Chemo #3 really was quite a day!
Monday, July 18, 2016
This Chemo Crap is a BEAST!
So, here I am, Day 7 of Chemo Week #2 and I am still in the buzzy little
foggy head space that my chemo seems to induce. I'm still convinced I did
this Chemo Week better than the first Chemo Week, but I am bothered that doing
it 'better' didn't shorten the duration or solve a couple of the least pleasant
things about Chemo Week....I know, I know....
Of course, I've pondered the differences - I think I am determined to get it "all figured out" for the very last infusion. Like it's a puzzle or a challenge (which it is) or something I can get certified in.
One of the main differences is the absence of my husband. He was able to take 5 days off last time and he is calming. To me, at least. He brings strength and warmth and calm and broad shoulders and laughter to my days. He's not used to taking care of me - I gladly accept the role of nurturer in this family, so I guess it's a little weird for both of us. But MAN, he's good at it - just by being here.
Another difference - no Nationals. Last time, my daughter was competing at Nationals in dance and I am all about ignoring any symptoms or inconveniences when something needs to be done. Hair changes and dream duffles and costume changes and cheering and pictures and packing snacks. Those served me well last Chemo Week. I was so busy making sure I could do all that I needed to do, I lost track of the energy it took or how I was feeling or having time to be annoyed by any of it.
Last difference (I assume) is this is now Infusion #2...more poison. More impact? Probably. So, an extra day of jittery or buzzy or jangly or whatever is probably to be expected.
Top it all off with a HUGE pile of hair that came out of my head this morning!
"It's only hair. It's only hair. It's only
hair..." I know it logically. Heck, I even look like I still
have a full head of hair to the average observer who didn't pull out, watch
fall out and stop from going down the drain and then pile up my hair for a
marathon nearly-5-hour hair crisis this morning.
Suffice it to say - if you have long, naturally curly hair and are doing chemo cold caps - you may not want to follow the instructions to the tee on the web site. I did as instructed, using clips and not bands, washing only twice a week during non-infusion weeks, not combing or wetting my hair for an entire week+ (this includes 3 days before and 5 days after chemo), and just 'leaving it alone'.
Oh. My. Goodness.
When I finally got in the shower at 6:40am this morning to wash and condition my hair - there was a matted rat's nest the size of a baseball in my hair. It took me, my husband, the big comb we bought, a ton of conditioner, 8 or 9 times in the shower to let the water try and untangle my hair and finally, a trip to PetSmart for a special comb for matted fur. My husband is not only calming - he's a 'think-outside-the-box' (and species) kind of guy! I considered not typing that - because really, who wants to admit they had to use a doggy comb? Oh well, this will crack me up someday! (It actually cracked us up several times this morning...but it was that disturbing, anxious laughter on my part!)
I tried to tackle it all by myself before the rest of the house was up and finally had to toss in the white towel.
I had a feeling I was going to lose a LOT of hair - I could feel that mass last night when I tried to readjust the clip so I could get comfortable and try and sleep (something which has been alluding me for the past 2 nights). I was worried, but had no idea it would be this bad.
It took nearly 5 hours before we finally got it all untangled. And all the while, I kept piling up the hair...it was a massive amount. I feel certain I did not see it all...I am 99% sure Patrick was tucking strands into his pockets so I wouldn't notice how much was coming out....I just love him!
And then there was the hair that I lost walking to the car and in the car and probably on the stairs and at the pet store and in the final shower I took because combing and raking and unmatting your hair for 5 hours is a LOT of work. I had to start over or risk offending everyone I came in contact with today. Nothing like a good anxiety sweat to go with major hair loss and chemo fog.
But it's over. It's done. It is what it is and I'm okay.
We made a memory - my sweet husband and I. We laughed and were silly in the midst of this distressing task. He was kind and practical and sometimes all business and sometimes so gentle and sometimes the perfect mix of both. And, as trivial as it sounds after all that - my hair is CLEAN! I had no idea how spoiled and first-world I am...but not being able to wash my hair every day has been a challenge.
I was exhausted. I took a nap. I cleaned a bathroom (except the tub...I just can't lean over this week...my balance is at best, that of a drunken 80 year old after a hard night.) and now I am typing and frantically eating cherries.
The sweet tooth is in full-force. And right now - cherries and nectarines are my Jones. The nausea stays at bay as long as I honor my body's need to eat real food. A sip or two of gingerale and root beer is okay, but no junk. I pay dearly for junk.
So, cherries and nectarines it is. With clean hair. And a clean upstairs bathroom. And two sleeping dogs at my feet. And lots of ice water. And this new (soon-to-be) hysterical memory of the Dog-Comb-To-The-Rescue, Five Hour Detangling Session...and my lovingly piled up bits of "it's just hair."
I am hoping to come out the other side of Chemo Week #2 by day after tomorrow - but if it takes an extra day or two...I'm going to do my best to roll with it...'cause this Chemo Crap is a BEAST!
Of course, I've pondered the differences - I think I am determined to get it "all figured out" for the very last infusion. Like it's a puzzle or a challenge (which it is) or something I can get certified in.
One of the main differences is the absence of my husband. He was able to take 5 days off last time and he is calming. To me, at least. He brings strength and warmth and calm and broad shoulders and laughter to my days. He's not used to taking care of me - I gladly accept the role of nurturer in this family, so I guess it's a little weird for both of us. But MAN, he's good at it - just by being here.
Another difference - no Nationals. Last time, my daughter was competing at Nationals in dance and I am all about ignoring any symptoms or inconveniences when something needs to be done. Hair changes and dream duffles and costume changes and cheering and pictures and packing snacks. Those served me well last Chemo Week. I was so busy making sure I could do all that I needed to do, I lost track of the energy it took or how I was feeling or having time to be annoyed by any of it.
Last difference (I assume) is this is now Infusion #2...more poison. More impact? Probably. So, an extra day of jittery or buzzy or jangly or whatever is probably to be expected.
Top it all off with a HUGE pile of hair that came out of my head this morning!
Suffice it to say - if you have long, naturally curly hair and are doing chemo cold caps - you may not want to follow the instructions to the tee on the web site. I did as instructed, using clips and not bands, washing only twice a week during non-infusion weeks, not combing or wetting my hair for an entire week+ (this includes 3 days before and 5 days after chemo), and just 'leaving it alone'.
Oh. My. Goodness.
When I finally got in the shower at 6:40am this morning to wash and condition my hair - there was a matted rat's nest the size of a baseball in my hair. It took me, my husband, the big comb we bought, a ton of conditioner, 8 or 9 times in the shower to let the water try and untangle my hair and finally, a trip to PetSmart for a special comb for matted fur. My husband is not only calming - he's a 'think-outside-the-box' (and species) kind of guy! I considered not typing that - because really, who wants to admit they had to use a doggy comb? Oh well, this will crack me up someday! (It actually cracked us up several times this morning...but it was that disturbing, anxious laughter on my part!)
I tried to tackle it all by myself before the rest of the house was up and finally had to toss in the white towel.
I had a feeling I was going to lose a LOT of hair - I could feel that mass last night when I tried to readjust the clip so I could get comfortable and try and sleep (something which has been alluding me for the past 2 nights). I was worried, but had no idea it would be this bad.
It took nearly 5 hours before we finally got it all untangled. And all the while, I kept piling up the hair...it was a massive amount. I feel certain I did not see it all...I am 99% sure Patrick was tucking strands into his pockets so I wouldn't notice how much was coming out....I just love him!
And then there was the hair that I lost walking to the car and in the car and probably on the stairs and at the pet store and in the final shower I took because combing and raking and unmatting your hair for 5 hours is a LOT of work. I had to start over or risk offending everyone I came in contact with today. Nothing like a good anxiety sweat to go with major hair loss and chemo fog.
But it's over. It's done. It is what it is and I'm okay.
We made a memory - my sweet husband and I. We laughed and were silly in the midst of this distressing task. He was kind and practical and sometimes all business and sometimes so gentle and sometimes the perfect mix of both. And, as trivial as it sounds after all that - my hair is CLEAN! I had no idea how spoiled and first-world I am...but not being able to wash my hair every day has been a challenge.
I was exhausted. I took a nap. I cleaned a bathroom (except the tub...I just can't lean over this week...my balance is at best, that of a drunken 80 year old after a hard night.) and now I am typing and frantically eating cherries.
The sweet tooth is in full-force. And right now - cherries and nectarines are my Jones. The nausea stays at bay as long as I honor my body's need to eat real food. A sip or two of gingerale and root beer is okay, but no junk. I pay dearly for junk.
So, cherries and nectarines it is. With clean hair. And a clean upstairs bathroom. And two sleeping dogs at my feet. And lots of ice water. And this new (soon-to-be) hysterical memory of the Dog-Comb-To-The-Rescue, Five Hour Detangling Session...and my lovingly piled up bits of "it's just hair."
I am hoping to come out the other side of Chemo Week #2 by day after tomorrow - but if it takes an extra day or two...I'm going to do my best to roll with it...'cause this Chemo Crap is a BEAST!
Friday, July 15, 2016
Chemo Week #2
Chemo Week - it's a phenomenon. To me, at least. It's sneaky and doesn't follow a specific pattern (can I tell you how much that frustrates this control freak?) and it's fraught with emotion. For me, at least.
As I've said, all doctors, nurses, techs, survivors, caregivers, neighbors and relatives will tell you Chemo is different for everyone. It's starting to feel like those warnings they make you sign at every doctor's appointment or when picking up a prescription and all the "possible side effects" grossness you get to hear at the end of every miracle drug ad. I get it. We are a litigious society and will sue at the drop of a hat. I have to think it all goes back to that hot cup of coffee spilled in someone's lap and then they got the bright idea (clearly a first for someone surprised that a HOT cup of coffee might burn them if they placed it in their bare lap, probably between their legs and then drove off in a car...sigh...sorry...I ramble...) to sue McDonald's or Starbucks or whatever company was trying to do their job by providing a hot cup of coffee...which is probably what they wanted...nevermind...
Anyway, everyone's chemo week is different. Which makes it hard to plan.
I like to plan. I find planning to be comforting and spine-straightening and superpower-inducing.
So, not to shock anyone - I planned for the possibly unplannable (not a word, but it's what my mind wants to say).
The medication modifications are working for me. I have totally laid off the nausea medicine in favor of ginger tea - hot and cold, depending on my mood (thanks Mickey!). And gingerale - because man, oh man, this chemo gives me a SWEET TOOTH! I am a salty girl, but not with this...salt can't touch the nasty, tinny taste in my mouth, but a pop of gingerale or a bite of perfectly ripe fruit - BAM!
I have also, with my doctor's approval, changed around the dosage of the steroids...which I do not like to take, but appreciate their benefit during this recovery time. I am taking them longer past chemo, but in smaller doses. Kind of like weaning myself off them slower, but still getting all the mg or whatever they come in. I think it agrees with me.
I have not bothered with the 'deep bone pain' medicine...yikes! That was a total butt-kicker! In favor of acetaminophen...the generic kind, you know, really cheap Tylenol! It's keeping the white blood cell regeneration pain at bay quite nicely. And doesn't turn me into a buzzing freak of nature. YAY!
I am forgetful. My balance is shot. I am weary. And I am weepy.
Forgetful seems far too normal to my family - they just chuckle (have I mentioned they are evil???). The balance thing is weird, but I have 3 strong family members who are more than happy to lend an arm to hold me up. The weary is my new reality. I am set up to rest when I need to. I still push a bit too hard - but only in the safety of my own home or when there is no other choice...like the dogs need to go out or be fed or I need to do something recovery-related and there is no one around to assist. I napped a little bit yesterday, but I feel better if I just veg out on the couch awake and watch my myriad of recorded shows that are just for me! I was in "A Chef's Life" heaven most of the afternoon yesterday...thank you Vivian!
The weepy part is wearing on me. My lovely doctor gave me and my family wonderful advice when we had our very first appointment. She talked about how we should talk to each other during chemo - the appointments, the recovery, the ups and downs. We listened, we practiced, we heard her...but I think yesterday I was "thumb sucking" as Daddy used to call it.
Feeling sorry for myself. Not because I have cancer, but more because I have a new reality. And I can't and wouldn't change it - I want this new reality because I believe it's going to lead me right out of cancer and into survivorship.
But, there I was - weepy. Needing people around me. Paying attention to me. Wanting to hold my hand and talk to me and watch my shows (which they could care less about) with me. During the summertime when they have plans.
I may be in chemo week, but first and foremost, I am a mom. I want my kids to enjoy their summers. I want them to have as much normalcy as possible. I want them to be happy and carefree and joyful and with their friends.
So, without hesitation, I gave them permission to go. Away from me and my weepy self. I didn't make them feel guilty (at first...but we'll get to that). My only conditions revolved around getting them places - because, let me just tell you that I have no business driving right now! My lack of focus and balance and overall weariness seems a poor combination to put behind the wheel of even my compact car!
And so they left.
To my rescue - a friend I haven't gotten to spend as much time with as I would like - because life is like that. Business comes when it comes and you have to respond, especially when it means an easier life for your family or a bit of a bump to your passion or business or goals. And so, no matter how much we enjoy the heck out of each other, we have not had the time to make the time to hang out. And seriously, we know the risks...I don't think we have ever had a "coffee" that lasted less than 3 hours!!!!
So, she was sweet enough to sit with me at my kitchen table and we talked and laughed and enjoyed a few hours. But then she left. And the house was empty. And I was weepy. Full of totally unfounded loneliness. I was tired...why didn't I just rest or take a nap? And I wanted to make something, but
I knew I needed help. Why did that matter so much? And I wanted someone to hold my hand. But I had 2 perfectly lovely dogs keeping me company and completely eating up the extra attention.
Now, my son got home first - it's no wonder - I burst into tears when he was leaving (so yes, I did kind of make him feel guilty for leaving me, but it was unintentional...I had no control in that moment)....I'm certain he was mortified and thought I had lost my mind....but I just couldn't help it. I didn't want him to leave. But then I had to send him out to pick up my daughter. And they handle things completely differently, so I should not be surprised that when they got home from a pretty short car ride together, there was tension. I'm sure it was about crazy mom and why one got to go out for lunch with a buddy and one just got a Sonic drink. Or something just as Earth-shattering.
Anyway, I handled it poorly. Because I'm weepy. And weary. And I was thumb-sucking.
So, last night I had my worst evening so far. Nothing I can't handle, but it tried my patience and I lost my ability to say "I need you to...." or "It's important to me that we....". I was silent and stoic and totally self-involved and not the least bit proud of it.
But no matter how much I knew my behavior was selfish, I couldn't get out of the funk.
Even on the most normal day, if the entire family is at home at dinner time, I expect us to eat together at the table. Without our phones, with music, but not television in the background. I hope for conversation, but sometimes we settle for camaraderie or just a bit of togetherness and laughter and silliness.
I have decided, after a fair night's sleep and a beautiful rain this morning and a quiet cup of coffee, THAT was the root of my weepiness. I wanted a family dinner since we were all home. But I was unable to create a family dinner in my current state of unbalance and out-of-focus and weariness and it's just not as important to anyone else. They see it as too much work for me, and since they didn't understand how important it was to me (and I couldn't tell them with my thumb in my mouth like a big ole baby!), they thought it would be easier to just fend for ourselves, make it more casual, grab something. My husband wants to make everything less stressful for me wherever he can. My kids (since the switch to clean eating in our home) seriously jump with gusto at any opportunity to eat carry out junk....it hurts my heart.... And, I am eating for my life right now. I don't want to put anything in my body that doesn't help more than it hurts...unless it's a crazy craving - like the gingerale or the perfect piece of dark chocolate salted caramel fudge...huhn? where'd that come from....man, I want a piece of fudge right now!!!
Anyway, we made it through. I am still buzzy and unbalanced and tired and the hair thing is causing some crazy manic thoughts (I am actually taking pictures of the bunches and tangles that are coming out....why?), but I am feeling less weepy towards my family. I have cried a dozen times at the violence that is happening in our world. My heart broke wide open watching the horror in Nice, France last night...just minutes after watching and weeping over another funeral for an officer here in DFW. I don't and can't understand hatred. I do understand fear, but I just can't get my brain to make the jump from fear of different or unknown or something past or something perceived to hatred. And my heart hurts. Thankfully, it makes me want to reach out, give a hug, a smile, any piece of myself that might help, a prayer or an extra ounce of patience and tolerance and love. It's how I was raised and I hope it's one of the things I bring to chemo week that will help me heal (and if not heal the world, at least not hurt anyone else during my new reality.)
Anyway, everyone's chemo week is different. Which makes it hard to plan.
I like to plan. I find planning to be comforting and spine-straightening and superpower-inducing.
So, not to shock anyone - I planned for the possibly unplannable (not a word, but it's what my mind wants to say).
The medication modifications are working for me. I have totally laid off the nausea medicine in favor of ginger tea - hot and cold, depending on my mood (thanks Mickey!). And gingerale - because man, oh man, this chemo gives me a SWEET TOOTH! I am a salty girl, but not with this...salt can't touch the nasty, tinny taste in my mouth, but a pop of gingerale or a bite of perfectly ripe fruit - BAM!
I have also, with my doctor's approval, changed around the dosage of the steroids...which I do not like to take, but appreciate their benefit during this recovery time. I am taking them longer past chemo, but in smaller doses. Kind of like weaning myself off them slower, but still getting all the mg or whatever they come in. I think it agrees with me.
I have not bothered with the 'deep bone pain' medicine...yikes! That was a total butt-kicker! In favor of acetaminophen...the generic kind, you know, really cheap Tylenol! It's keeping the white blood cell regeneration pain at bay quite nicely. And doesn't turn me into a buzzing freak of nature. YAY!
I am forgetful. My balance is shot. I am weary. And I am weepy.
Forgetful seems far too normal to my family - they just chuckle (have I mentioned they are evil???). The balance thing is weird, but I have 3 strong family members who are more than happy to lend an arm to hold me up. The weary is my new reality. I am set up to rest when I need to. I still push a bit too hard - but only in the safety of my own home or when there is no other choice...like the dogs need to go out or be fed or I need to do something recovery-related and there is no one around to assist. I napped a little bit yesterday, but I feel better if I just veg out on the couch awake and watch my myriad of recorded shows that are just for me! I was in "A Chef's Life" heaven most of the afternoon yesterday...thank you Vivian!
The weepy part is wearing on me. My lovely doctor gave me and my family wonderful advice when we had our very first appointment. She talked about how we should talk to each other during chemo - the appointments, the recovery, the ups and downs. We listened, we practiced, we heard her...but I think yesterday I was "thumb sucking" as Daddy used to call it.
Feeling sorry for myself. Not because I have cancer, but more because I have a new reality. And I can't and wouldn't change it - I want this new reality because I believe it's going to lead me right out of cancer and into survivorship.
But, there I was - weepy. Needing people around me. Paying attention to me. Wanting to hold my hand and talk to me and watch my shows (which they could care less about) with me. During the summertime when they have plans.
I may be in chemo week, but first and foremost, I am a mom. I want my kids to enjoy their summers. I want them to have as much normalcy as possible. I want them to be happy and carefree and joyful and with their friends.
So, without hesitation, I gave them permission to go. Away from me and my weepy self. I didn't make them feel guilty (at first...but we'll get to that). My only conditions revolved around getting them places - because, let me just tell you that I have no business driving right now! My lack of focus and balance and overall weariness seems a poor combination to put behind the wheel of even my compact car!
And so they left.
To my rescue - a friend I haven't gotten to spend as much time with as I would like - because life is like that. Business comes when it comes and you have to respond, especially when it means an easier life for your family or a bit of a bump to your passion or business or goals. And so, no matter how much we enjoy the heck out of each other, we have not had the time to make the time to hang out. And seriously, we know the risks...I don't think we have ever had a "coffee" that lasted less than 3 hours!!!!
So, she was sweet enough to sit with me at my kitchen table and we talked and laughed and enjoyed a few hours. But then she left. And the house was empty. And I was weepy. Full of totally unfounded loneliness. I was tired...why didn't I just rest or take a nap? And I wanted to make something, but
I knew I needed help. Why did that matter so much? And I wanted someone to hold my hand. But I had 2 perfectly lovely dogs keeping me company and completely eating up the extra attention.
Now, my son got home first - it's no wonder - I burst into tears when he was leaving (so yes, I did kind of make him feel guilty for leaving me, but it was unintentional...I had no control in that moment)....I'm certain he was mortified and thought I had lost my mind....but I just couldn't help it. I didn't want him to leave. But then I had to send him out to pick up my daughter. And they handle things completely differently, so I should not be surprised that when they got home from a pretty short car ride together, there was tension. I'm sure it was about crazy mom and why one got to go out for lunch with a buddy and one just got a Sonic drink. Or something just as Earth-shattering.
Anyway, I handled it poorly. Because I'm weepy. And weary. And I was thumb-sucking.
So, last night I had my worst evening so far. Nothing I can't handle, but it tried my patience and I lost my ability to say "I need you to...." or "It's important to me that we....". I was silent and stoic and totally self-involved and not the least bit proud of it.
But no matter how much I knew my behavior was selfish, I couldn't get out of the funk.
Even on the most normal day, if the entire family is at home at dinner time, I expect us to eat together at the table. Without our phones, with music, but not television in the background. I hope for conversation, but sometimes we settle for camaraderie or just a bit of togetherness and laughter and silliness.
I have decided, after a fair night's sleep and a beautiful rain this morning and a quiet cup of coffee, THAT was the root of my weepiness. I wanted a family dinner since we were all home. But I was unable to create a family dinner in my current state of unbalance and out-of-focus and weariness and it's just not as important to anyone else. They see it as too much work for me, and since they didn't understand how important it was to me (and I couldn't tell them with my thumb in my mouth like a big ole baby!), they thought it would be easier to just fend for ourselves, make it more casual, grab something. My husband wants to make everything less stressful for me wherever he can. My kids (since the switch to clean eating in our home) seriously jump with gusto at any opportunity to eat carry out junk....it hurts my heart.... And, I am eating for my life right now. I don't want to put anything in my body that doesn't help more than it hurts...unless it's a crazy craving - like the gingerale or the perfect piece of dark chocolate salted caramel fudge...huhn? where'd that come from....man, I want a piece of fudge right now!!!
Anyway, we made it through. I am still buzzy and unbalanced and tired and the hair thing is causing some crazy manic thoughts (I am actually taking pictures of the bunches and tangles that are coming out....why?), but I am feeling less weepy towards my family. I have cried a dozen times at the violence that is happening in our world. My heart broke wide open watching the horror in Nice, France last night...just minutes after watching and weeping over another funeral for an officer here in DFW. I don't and can't understand hatred. I do understand fear, but I just can't get my brain to make the jump from fear of different or unknown or something past or something perceived to hatred. And my heart hurts. Thankfully, it makes me want to reach out, give a hug, a smile, any piece of myself that might help, a prayer or an extra ounce of patience and tolerance and love. It's how I was raised and I hope it's one of the things I bring to chemo week that will help me heal (and if not heal the world, at least not hurt anyone else during my new reality.)
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