Friday, July 13, 2018

Two profiles (and straight on) of cancer

Obviously the above photo was taken awhile ago, April perhaps, back when I had enough hair that it tried to strangle me in my sleep. 

The photos below were taken this morning. Dada actually got the light flashing on what I call my "Glade plug-in", my Neulasta patch that pumps an infusion into me to kick my bone marrow into high blood cell production. Technology can be absolutely fascinating. After chemo yesterday, my sweet nurse Jenny attached it to my arm after programming it to go off in 27 hours. It clicks and beeps and stings me once like a bee, which inserts a tiny catheter into my arm that will allow the infusion to proceed once the 27 hours have passed. In other words, I get to take my meds with me and not make another trip back to the oncologist the day after chemo. When my timer is up, it will beep long enough for me to notice that, no, it's not the coffeemaker or the microwave, "oh, wait, that's me, haha!" Then it pumps in my meds, clicks and beeps again when it's done about 45 minutes later, and I can then have it removed and shower or take a bath or go swimming or whatever. I take it back to the doc the next time I go and they recycle it as it counts as a "sharps" and shouldn't be just pitched in the trash. Fascinating! AND I get to look like a lightning bug overnight. How cool is that?

This selfie is from today. Eyeliner, earrings from my Daddee, necklace from my friend Ann, bandanna, good to go. Since I've been wearing bandannas in one form or another since junior high (no joke, some of you remember, and that was way before camp) it hasn't fazed a lot of you to see me in them. You probably have to work to remember that my real head doesn't have one attached, hehe! The shirt, from my friend Julie, is accurate. My friend Rachel took me to chemo yesterday and we were talking about what takeaway lesson(s) might be part of this whole experience. I knew right away and said that one of them, "is to show me how loved I am." Some of you are probably shaking your heads, thinking, "this girl has lost her brain cells to chemo brain for sure." Truly though, if I were to make a list of everyone who has stepped into this mess with me, you'd be amazed. I feel like I could change the sayings, "there's an app for that" or "I've got a guy for that" to "I've got a friend for that." God has blessed me incredibly. My friend Cammie used to say that she felt like she was God's favorite little child, but I think she must have scootched over for me to be beside her under that heading, because in spite of my disappearing eyebrows and eyelashes and Immodium with me everywhere I go, I am being loved on in ways I can't even imagine. I know there are some of you I may never even meet who are praying for me and that just blows me away. Thank you! 

And whoever sent me the box of Scripture flips with no note, it got here safe and sound yesterday, and delighted me. If nobody claims it, I'm going to declare it mailed directly from Heaven from my friend Jan who kicked off a moms' Bible study years ago where I made some of my very best girlfriends. She is the one who taught us to get index cards and work our way through the Bible, claiming God's promises and writing them down and keeping them with us to use them in real life. I have more than one set in various purses and Bible study bags, haha. So thank you, friend!

And thank you to all of you once again who are beside me on this journey no matter how far away you may be physically. We are touched each time by your love. And YOU are loved right back!

Chemo yesterday went very smoothly despite me having to pee four times while I was there, haha. I think that's a record so far. I may have already mentioned my Gramps used to say, "I gotta go so bad my false teeth are floating..." Still cracks me up. I inherited my love of plaid (and wearing more than one plaid pattern at once) from him, as well. He still makes me laugh though he's been gone for 15 years now. He reported for guardian angel duty 10 days before Carrie was born, and I can't tell you how many times I've heard him laughing over these ridiculous children we have...

Here are the numbers from yesterday, so if you're not interested, you may be excused. White blood cells were at 10.26, Hemoglobin still a little down but in the normal range right at 10.0 (I think 12 is a magic number- my nurse friends will be happy to set me straight in the comments), and platelets were 157, which I think is also down from last time but they said no worries. Rachel and I laughed over the graphs, which don't make any sense to me anyway, but especially over the oh-my-goodness-I-don't-have-any-white-blood-cells! 

And once again, a shameless plug for the comedy "What's Up, Doc?" starring Barbra Steisand, Madeleine Kahn, Liam Dunn, and a host of others, here are the meds I'm taking this morning. My brother is already reciting from memory, "see this little yellow pill, Bailiff?" "Yes, Judge. What's it for?" "To remind me to take the little blue pill." "Uh, what's that one for, Judge?" "I dunno. They're afraid to tell me."

Don't be alarmed. Today is the heaviest day of meds- cancer treatment does not usually look like this for me. Today is the last of three days a month I take the steroid which helps with the side effects of Taxotere, one of my chemo drugs. The other two are anti-nausea meds to also help. Yesterday, drugs like this were part of my IV cheerleader combo before they begin the chemo drugs, so I didn't need to take them orally also. I take them today and tomorrow and then as needed. Thanks to the meds and your prayers, I have not vomited at all and I am now 2/3 done with chemo! The vitamins I take everyday, along with the allergy med which has links to reducing bone pain from the Neulasta patch when the bone marrow starts cranking out the extra production. It worked like a charm last time and I had no bone pain at all that round. I mentioned that this dose is 10mg and the recommended one was only 5mg so maybe that's why. At any rate, I'm sticking with it. Round #5 will be in three weeks and then round #6 will be in six weeks on our second day of school and then this aspect of life will be done. 

Once my numbers stabilize I will have surgery and yes, I did get my surgical consult moved up an entire month so I feel better about that. I still have questions but did discover yesterday that according to my oncologist most of the reconstruction surgeries are not silicon or saline like I'd imagined but are actually the ones involving the tummy tucks. Who knew? Why does that matter? Well, perhaps I will be less pressured into something I am fairly sure I don't want and can actually be encouraged by the portfolios or photos or whatever will be shown to me at the consult. Again, just going off of what I've heard and thought at this point, I have no real basis personally yet. I'll keep you posted! Thanks again for the prayers- I'm proof that they are working!

Dude, that's MY coffee...

Look carefully above my coffee mug at the new root that crazy plant is sending down. Sometimes I pat coffee grounds into its soil and it must be telling me I haven't done it for awhile, so it's going to try out the liquid form for some variety...

Tuesday, July 10, 2018

Crying in a hammock is not recommended

Did you know that a hammock, while wonderful for seclusion and relaxation, is not an ideal place to attempt a good cry? Some of you are ahead of me on this one. You're already nodding as though this should be obvious. 

Well, it wasn't to me. I was taking advantage of the seclusion and relaxation when one of the *warning, sarcasm ahead* super side effects of chemo snuck up on me: mood swings. 

I've maintained all along that going through chemo is like being pregnant because it's a total body takeover kind of deal. Today I was doing some reading (until my eyeballs were ready to fall out, actually, but never mind that) and discovered some things I probably should have figured out earlier. This I will blame on yet another side effect: chemo brain. Chemo brain is like pregnant brain where your thinking is fuzzy due to fatigue, side effects of medications, anxiety, etc. Apparently, chemo causes a decrease of female hormones, which, as we all know, does goofy things to otherwise (mostly) rational women and girls. At certain times of each month, when hormones are doing their thing, females can be perfectly fine one moment and then raging over the smallest, most innocent infraction (real or imagined) and then in tears the next instant because they're angry about being angry.

Sounds like my week. 

Aha! Hormones! Who knew?!

I've found myself raging over how many decisions need to be made throughout this medical adventure and yet how many of them are out of my realm of control. I've become incensed at how many other people want to make decisions for me in areas I CAN control. I've been disappointed by the illusion that when you become a grown up you can call the shots. Adulting is full of double edged swords and catch-22s and "haha, no tag backs!"

And I'm tired. 

But am I tired because everyone has been telling me how tired I'll be? Am I tired because everybody reminds me, "it's cumulative"? Or am I tired because of the meds/toxins being pumped into me? Am I tired because I'm a mom? Am I tired because I don't drink enough water or caffeine or I don't get enough protein or not enough sleep or not enough exercise or...?

Some of you are nodding for different reasons now. Some of you are remembering (or living), "oh yes, that sounds like being pregnant or a parent of a newborn. Am I drinking enough? Am I eating enough? Am I eating too much? Do I weigh enough or too much? Is the baby growing enough? Do I have enough fluid? Do I have enough milk? Are they nursing enough? Are they getting enough to eat? Are they growing enough?"

Some of you are replaying the thoughts in your head: am I good enough? Will I ever be good enough? Is this worth it? Am I worth it? Are they worth it? Am I supposed to be giving 50% and they're supposed to be giving 50% to make 100%? Or am I supposed to be giving 100%? What if they don't? What if I can't? What if...?

I'm sitting here, rubbing my stubbled head in frustration. Darn chemo brain. Can't even think; I sound like a fleet of hamsters on wheels just squeaking along in circles, not making any sense. I am surrounded by information from every source imaginable: the internet, books, friends, yet I still don't have enough information to make the decisions that need to be made.

In short, how does one decide if they want boobs or not? I am wrestling with that a lot lately. How does one make a coherent decision that will last for, God-willing, at least the next 40 years of one's life? For those of you who are new to this game, there are essentially 4 main options for those facing surgical removal of at least one breast (that's me, in case you're curious. Right side's gotta go. Left side is undetermined at this time.) You have your removal without reconstruction which is essentially "going flat" as your first option, reconstruction from your own body (there are multiple areas to choose from such as rear end, abdomen, and back) as your second, or implants of saline (third) or implants of silicon (fourth). Those last two options come with what I'm thinking of as "extended surgery plans" as they may need refilled or readjusted, requiring more surgeries down the line. Each comes with their own set of pros and cons. 

Now try making the decision while on drugs that affect the taste of foods you eat, wreaks havoc on your emotions because your hormones take a nose-dive, while trying to stay positive and not freak out about going into surgery in the first place with the catheters and fasting and breathing tube and the IV and all that jazz. How am I supposed to decide when my brain feels foggy and I can't take the usual comfort from a pint of Ben & Jerry's (not that that's stopped me from eating ice cream, who are we kidding here, but still)? 

To add insult to injury, or the other way around perhaps, I even finally have the swollen ankles that apparently comes with this territory (and pregnancy!)

I suppose I should give myself grace for bursting into tears in the hammock. However, due to my good friend Gravity, when you cry in a hammock the tears will coast down your face and behind your head and soak the back of your neck instead of down the front of your face and into your cleavage (which, yes, I realize that will be different after surgery as well. See? Total body takeover). Your nose will clog up even faster than usual, which I wouldn't have thought possible, and you might even get tears in your ears. As there is no graceful way in or out of a hammock, take your tissues in with you before you start your good cry. Better yet, skip the cry until you can watch a good movie. You're welcome for the Public Service Announcement.

And yet I really am okay. I don't want the tenderhearted among you to fret. I now know that hormones doing their weirded out thing is a contributing factor along with fear of the unknown. Tears won't hurt me. I'm sure I'll feel more on solid ground once I have that surgical consult to go over options with a professional, where I can ask my questions, talk about pictures I've seen, and so on. As usual, there is no convenient neon box lighting up which says, "This is what you should do. Love, God." Not that He doesn't play a part in the decision making, it's just that He's got me no matter what I will eventually pick, which does help with perspective when I get freaked out. 

How can you help? I'm so glad you asked. I realize this surgery can't happen until mid-September and it is only July, but let's get this party started. You can be praying for my surgeon, my team, clarity in my decision making, peace with whatever decision is made, smooth surgery with no complications, that I wouldn't get sick from three school's worth of germs coming home with all three kids while I'm recovering, flexibility as our family adjusts to my recovery time, that I be a good patient and follow orders to not lift and that I can start the stretches and exercises soon after to help with recovery and range of motion, that I will be able to sleep as I heal because I am a stomach sleeper, that in the hardest moments (like when the bandages come off, raw wounds, and there are surgical drains to empty-yikes) that I will remember that it's not going to be like that forever and that while my new normal will be different it will eventually become my new normal. Pick and choose what you like- I gave you lots of starting points. You'll even think of more, because hopefully you do not also have chemo brain!

And mucho thanks to those of you who have already kept me covered. I appreciate every prayer you send on my behalf. I really have been overwhelmed with mail, gifts, meals (goodness, the meals!), the wonderful hugs, the "just checking in"s and the "whaddya need"s. Thank you. Thanks for being in it with me for the long haul. Please keep them coming!

And don't cry in a hammock. Unless it's from laughing too hard, I suppose, but be careful as that has its own risks!

Monday, June 25, 2018

Birthday girl

Yes, this is really old news. The Evil Overlord (or so she might like to think of herself) turned 15 a month and a half ago. Today I have the relative peace, quiet, and brain function to post about it...

She's such a nut. 

Contrary to being a certified karate black belt, little kids tend to orbit her anyway, including in restrooms. She looked up through a crack in the stall once to discover she was being ogled by a small girl whose caregiver quickly went into Admonishment Mode. The funniest part was that she had unknowingly found said small girl's name tag at church previously. To hear "So and So Such and Such, how would you like it if someone was peeking at you while you were using the restroom!?" just about sent her into a fit of giggles. She recounted the story with great glee. There's always a spot on her albeit still bony lap for a small child:

She loves the water and is such a fish. She loves making people laugh, most recently by employing that double edged sword that is sarcasm. It's been really fun to be able to joke around with her and have her get what slips over the boys' heads. "I can't wait until you're old enough to tell you what I really think of you" has been uttered on more than one occasion around here if I am being honest, usually followed by the Toy Story quote, "but there are preschool toys present." Most often, it's followed by snickers from most parties, the moment is diffused and life goes on. 

She decorated her own cake this year. I thought I had pictures of it, but apparently I have this BosleyBomb one. I mixed the colors for her and she went to town. Grandmama was in town to help celebrate. Fifteen! We've had that kid forever! She's quick to delightedly point out that soon she'll be able to drive me for my maintenance meds. Talk about being glad all my hair is already gone, because boy, oh boy, would that be an occasion for pulling it out! Yikes. We are so not ready for this...

She claims to be anti-physical touch, but as you can see there is still plenty of personal space invasion going on. I'm honestly not sure how many of her friends hug her as she also claims several of them are afraid of her. She's crafting a quiet, witty, but watch out when I let loose kind of persona. 

And she also runs on ice cream. 

I never dreamed my daughter would be a black belt or ride skateboards or want to play the ukulele (that's on her Christmas list) but here she is in all her glory. She's at her grandparents' this week and I really miss her and her hugs. And not only because the new dishwasher still hasn't arrived and she'd been doing the dishes...

Happy belated birthday, Carrie. Thanks for being so patient with us this summer when things are seven kinds of crazy. We are blessed to have you, kiddo. Love you bunches. 

Friday, June 22, 2018

Hip hip hooray halfway!

Yesterday was my third chemo round which officially puts me halfway through this aspect of treatment! Wahoo! Thank you so much for praying over me and supporting my whole fam through this adventure. I firmly maintain that I've still never felt like a file number, not even once. I've been treated with respect, kindness, compassion, professionalism, and humor the whole way. I know a lot of that is a testament to the higher ups who do the hiring of fabulous professionals, but I also know that your prayers of protection and soothing-ness are contributing factors. Please keep it up as they are working. 

To be honest, I'm trying to not look ahead to the impending surgery as that just seems overwhelming at this point. At the very least it will involve a right side mastectomy. I don't have enough information (though I have tons of questions) to make a decision on reconstruction or not and/or if I should leave the left side alone as nothing has shown up there (yet? ever?) or have it removed and be done with it. All those Q&As will come at a surgical consult that I'd rather have sooner than later. I'll keep you posted. ;) I'm also a side and stomach sleeper which makes me anxious as I'm assuming I'll have to sleep upright while recovering. I'm also not looking forward to being put completely under with being tubed and cathed and all that. Yiiiiikes. Like I said, trying to be in the now and not the eeeeeeeek-then. One thing at a time...

For those of you who are the "where are the numbers" types, on May 31 my white blood count as 15.4 and yesterday it was 10.21, so it's down but not alarmingly. My hemoglobin was 11.0 May 31 and yesterday registered 10.4, also down. I asked if I should be eating more red meat or anything but my adorable Doc said, "think of your bone marrow as a factory. You have all the raw materials you need, but the chemo means your machinery is slower. Just keep taking your multivitamin, that's all you need." That was reassuring and a great mental picture for me! I'm assuming PLT means platelets and they were 247 in May and yesterday was 170. He said all were in the realm of normal and to not worry about it. He was pleased that I was doing so well and said that my big smile when he entered the room made his day. Another important number is my favorite; I only needed Immodium three times this past cycle instead of the 7-10 times I used it the first round. Can I get an amen and several hallelujahs!? Again, I know it's your prayers and I won't name names but you know who you are so thank you! 

Blackbutton, you asked about the Neulasta and yes, I was told to take Claritin and Aleve to help with the bone pain. I take a Claritin generic almost daily anyway, and I might have already said that Aleve works great for my dad but my mom can't tolerate it so I brought that up with my doctor and she said, "then stick with Advil since that works with you and don't risk the Aleve"- fine by me. I tried it this last round and managed to head off the old-lady-I-need-one-of-those-self-raising-chairs pain, wahoo! I took Advil the first day and was in pretty good shape, skipped it the second day because I didn't feel like I needed it but then didn't sleep well at all because my darn femurs hurt, so I took it before bed the third day and that was much better. Then I didn't need it anymore.

 My patch for this round is on and should fire early this evening and then I won't be a lightning bug anymore, haha. Dada told me I should sit out on the porch last night, blinking away, and see who I could attract. I thought it would be fun, but something (other than my husband) snuck into bed with me Tuesday night and chomped all over my torso. I didn't want to invite anymore bug bites so I abstained from attracting any more unfriendly visitors to my poor itchy bod! My Doc checked it out and said it's definitely not shingles or poison ivy or an allergic reaction. And it wasn't from weeding the garden because I only got 2 bug bites out there. Something definitely crawled into my pajamas! Stupid bugs... 

Liam had an appointment with his pediatrician and asked what chemo would do to bugs. Dr. Jon had a good chuckle and said, "wouldn't it be great if it had bit you and flew into the neighbor's yard and dropped dead? But think about the awful stuff some of them carry already..."
Liam piped up, "like malaria!"
Dr. Jon continued, "right, and Zika and West Nile and all that. I think chemo probably wouldn't do anything to them since they're capable of hosting all that icky stuff as it is..."
Well phooey! 

My Rita kept me good company yesterday while Mommee watched the Thingz and Bosley Underfoot. Not sure who needs a bigger medal. ;) Again, thanks for the support, the dinners, the cards, flowers, prayers, visits, groceries- you all are amazing, near and far! I have several more posts to do, but we are off to get some summertime bowling in since it is pouring today and then karate tonight. Have a fabulous weekend! 

Wednesday, June 06, 2018

Brimful of blessings

I want to start off by thanking those of you who have been touching base with me and for the gentle nudges about, "so, um, the blog doesn't have anything new on it yet, does it?" 

You're so sly. I love it.

You're right! The blog does indeed not have anything new on it. And there is old stuff that is also not yet on the blog.

So here I am. Thanks for the reminders. 

Last Thursday I had my second of six chemo treatments and my sweet Emily went with me to keep me out of trouble. 

Everything went well, I had a fabulous weekend, good energy levels for the most part with a touch of fuzziness around the edges, all food staying where it belongs, and had a good time with Grandmama visiting. We even got a girls-only breakfast out. Thank you, Mommee!

Monday night we had the honor of hosting a retirement party for one of Dada's coworkers. I heard several of them say they very much enjoyed themselves, but I had an absolute blast. It was so nice to talk with people and let the kids run around in the yard  and have "far too much food" and enjoy the sunshine in the trees. Even the bugs were minimal! The weather cooperated beautifully and nobody was tempted to stay too late as it was a work evening, so we had a perfect shindig. Thank you all who helped plan, prep, clean, and party! Thanks for blessing our home with your fun selves. We loved it.

Yesterday was Damon's birthday. Can you believe that kid is 8 already? Me neither. I love the Facebook memory feature that shows pictures of my huge stick-outy belly and the big kids as little kids kissing it. And yes, I'm aware that Carrie's birthday has come and gone and there was no blog post about that yet. Hush. I'm getting there eventually...

Did I mention when I asked what kind of cake he'd like he told me, "a minion leading a storm trooper"? 

So far today I've had to kick Carrie off my laptop two or three times and it's only lunchtime. And she slept in until ten. Yesterday I had to kick Damon off of it at least three or four times. So as you can see, blogging is difficult when one has no access to her tools. Another part of the procrastination is having coherent blogging thoughts, which are much more difficult to come by once all the kids are home. Mainly because there is no quiet once all the kids are home. I hear that that is something I will miss once they all move out. Someone who has actually experienced such an event might have to let me know if that is true or not. To go to the bathroom in peace... but I digress.

Annnnnd my computer is sticky. Ewwwww.

Also, Dr. Pepper doesn't taste like Dr. Pepper when you're doing chemo. *sip sip* It tastes astringent like what I'd imagine cleaning solution would taste like. As I need the liquids anyway, bottoms up. Please ignore any belching you hear from my general area. My apologies. My mouth is just now starting to feel a little pebbly and strange again, but as I know that doesn't last forever it is easier to mentally manage. I've also been using my alcohol-free mouthwash this round but haven't started the baking soda and salt rinse again yet. Perhaps today. Fritos taste pretty much the same in case you were wondering.

After the first chemo, I had a few good days and then Immodium became my best friend. I think I already talked about that in a previous post. I find it interesting that two of the chemo drugs caution you against constipation and one of them warns about the likelihood off diarrhea; you would think you'd end up about even in the middle. My bod declares otherwise and ends up needing Immodium, though I have to say that this round has been much better thus far, and yes, I'm knocking on my wooden kitchen table as I type. All that to say thank you to those of you who are praying over such things, and I know some of you definitely are. It is greatly appreciated, even though I have no secrets, haha. Nobody wants to spend all summer in the bathroom. Thank you, thank you, thank you. Mucho! Keep it up! I have no shame. ;)

Also knowing that bone pain would be approaching this time around, I got proactive and popped some Advil this morning when my femurs started to feel sore. No point in feeling like I'm 80 when I'm not there yet. Femur is such a funny word. Nothing like when your femurs start feeling funny. Teehee. My Doc said I could do Advil as long as I did it with food and only 400mg as 800 would be too much. Since mine are only 200mg, I can happily oblige. Aleve was recommended and works well for my Dad, but Mommee can't tolerate it and I already knew Advil works well for me, so my other Doc said to just skip it and stick with what works. I like that they are willing to work with me and be flexible instead of me blindly following orders. 

I've had super incredible friends pop in to visit, take me to treatment, bring us dinner, clean our bathrooms (seriously!), go grocery shopping for us, give us blankets and candies to settle my stomach, lavish us with books, flowers, coffee mugs, and other gifts, offer to take the kids to karate, give us money for pizza; it's been amazing. My sister in law's Bible study made us 14 freezer meals. Fourteen! Then her family drove them out to deliver them and visit with us. People all over creation are praying for us. And still you ask how you can help. You all are so loving and so supportive! We are truly blessed. Every day. Your love and the ways you show God's love, grace, and mercy blow us away. How could we ever not believe that He is good!? 

Two bits

And then there were none. Hairs, that is. Carrie officially has the longest hair in our household, and she can actually get it into a half-inch ponytail. Me? Not so much:

Thanks to Mommee, Lainie, Jessie, and Theresa for the scarves and head wraps. Adding them to my bandanna stash, nobody will ever know the difference since they're so used to seeing me in them already! Hehe!

So far, I still have eyebrows and eyelashes. One of my Docs ruefully told me I may still have to shave my legs. Talk about a lack of justice. Sheesh. ;)  My other Doc said my hair will grow back, and probably curly. Then I will look exactly like my mother! At least now Merida hair for the summer, whoohoo!