When Life Doesn’t Cooperate

The news isn’t good.  My cancer continues to grow (it’s nice to know I can grow something).  I had my CT scan yesterday and got the news from Lovely Liz around 2:20 pm (funny how you remember those things).  Strangely, she was a bit upbeat, like it’s time to get moving now.  We’ve played around long enough.

Now I was sure that my cancer had shrunk.  I would have bet money on it.  I think Pete Rose would have taken that bet.  But life didn’t cooperate.  I don’t feel bad, except for the persistent nausea from the cisplatin.  I’m not even that tired.  It’s strange, but a good strange.  I know God is in control, no matter what comes next.

It’s not that I didn’t cry, I did.  But not because I’m sad, because I’m really not.  Pissed off is more like it.  Pissed that I feel like I’ve wasted 12 weeks of treatment.  Pissed that my kids have to continue to go through this.  Pissed that I’ve got at least 24 more weeks of treatment and that will seriously cut into my planned vacation time.  Pissed that my dad is not personally here to share this experience.  I think my anger is being properly directed rather than being flung at the wall like taking a handful of darts and flinging them, hoping for the best.

Dr. Determined (I like this better than Dr. Downer) immediately went into full fight mode.  Lovely Liz told me he skipped over the next couple of drugs in line.  I imagine these drugs standing in line like tin soldiers waiting for their chance to be called up and Dr. D decides to call in the Navy Seals instead.  And I’ve got to say, I LOVE the name of this new drug.  It makes me smile every time I say it – Topotecan (pronounced toe-poe-tee-can).  Isn’t that just be best name for a killer drug.  Sounds so innocent.

Topotecan is from the Asian Happy Tree and is part of the Hyacinth family.  It has a single minded mission – to destroy the DNA of cancer cells as they replicate.  I imagine the double helix model with its red, blue, yellow and green ends twisting hoping to create more, when this little tiki guy comes in with his mask and rattle (think crazy witch doctor from Scooby-Doo and you’ve got my mental image) untwists the helix and starts pulling the ends of the DNA.  The helix collapses.  The witch doctor does another crazy dance and moves on to the next one.  You can’t help but laugh or smile with this drug.

There are some positives.  While my bone marrow will continue to take a hit and fatigue will be a greater monster, nausea may become a thing of the past.  I am so nauseated today that this sounds like the best trade ever.  It’s also done in 4 week cycles.  I get an infusion every Wednesday for 3 weeks, then I get a week off.  The infusion lasts about 2 hours, so I’ll only be at the hospital for 3 hours or so.  As I’ve asked so many, “What will I do with my Wednesday afternoons?”  Seriously, I’ve always had all day infusions.  This is great! To celebrate, I’m getting a new haircut tomorrow.  Well, actually I’m getting the haircut because my hair has lost its curl and is flat and thin, but it sounds better to say I’m celebrating.

God has promised me healing.  I heard Him say it and He NEVER talks to me audibly so this is a promise I cling to.  My husband and I ask only for shrinking tumors and that they become stable.  We can live with stable.  We can live with smaller.  Maybe this is why I’m just not all that worried.  As I explained to my Ultimate Bengal Fan, Dr. Determined’s job is to find the right drug, mine is to fight and not give up and God’s is to do the rest.  Since God has the biggest job, who am I to stand in His way?

Please don’t feel sorry for us.  We don’t.  Pity doesn’t make anyone feel better.  If anything, we are more determined than ever to fight as a family.  The boys are looking forward to a more nausea free mom and Hubby hopes his cooking days are quickly coming to an end.  I am looking forward to Wednesday afternoons.  And God has all this in His Hands.  Life may not be great, but it’s good.  I feel good.  Other than the nausea, better than I have in weeks.

Bring on the Topotecan and smile.  God has work to do.

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A Chemo Diary

Dear Diary,

Why does everyone want to know what chemo is like? Isn’t it enough that I post about the intense waves of nausea, the debilitating fatigue and the seemingly endless amounts of medication? Are these people nuts or do are they just have a morbid curiosity about the suffering of others? In an effort to satisfy this strange curiosity of my readers (and begging the forgiveness of those who know the drill all ready), here is a typical day of chemotherapy.

6:00 AM: Wake up to NPR. Slap alarm clock hard because I’ve only just fallen asleep two hours before because of the steroids I have to take the night before chemo. Throw off blankets when Hubby comes in to remind me it’s chemo day (like you can forget that. “Oh my gosh Honey, thanks for reminding me today is the day I get poisoned. I totally forgot!”). Stumble into the bathroom and again think about creating a mirror that doesn’t show your face first thing in the morning.

6:05 AM: Give myself my Lovenox shot to prevent blood clots. At this point, I think this is funny since my platelets were so low last week I was warned if I hit my head, Hubby needed to take me straight to the ER since I was at risk for cranial bleeding. After shot, I do a dance since the shot burns like crazy. I consider this my morning aerobics. After aerobics, I brush my teeth and get dressed. My outfit on chemo day is always the same; pajama pants and an comfy v-neck shirt. I also put my Emla cream over my port. Emla is a topical anesthetic cream that keeps you from feeling the stick of the needle when they access your port. Considering the needle is over an inch long, I’m entitled to be a wuss about this.

6:15 (or so) AM: I make my cup of tea and start on breakfast. I used to be a coffee drinker. I still love the smell of coffee and I can’t wait until I can drink it again. My stomach no longer appreciates the health benefits of coffee, thanks to chemo. I like tea, but it’s just not the same. I drink my tea as I make Cream of Wheat on top of the stove to take with me. Steroids make your blood sugar surge so I don’t eat before the Angel in Blue draws my labs. My blood sugar is always high, but it’s a psychological thing for me. That and I don’t get lunch until noon so I’m starving by 10 if I eat too early.

6:25 AM: Mamma Renie arrives, coffee in hand (I am SO jealous) to wrangle the boys. Actually, the boys are in bed so she gets to enjoy a few hours of quiet before the onslaught. We joke about the day ahead as Hubby loads up the car with my stuff. I take a backpack loaded with my Kindle Fire, my Dammit Doll, quart water bottle, Laughing Snoopy (more on him later), slippers, comics (which has the crossword on the back), book for Hubby and other assorted items including anything that will be used to decorate Ivy Poleski (my IV pole). Snowflakes seem appropriate given the weather so there will be some in the pack. This weighs about 12 pounds and I lug it myself (weight training). I hug Momma and she gives me my biweekly pep talk about how the cancer is dying and this is all good. I cry. She cries. Hubby leaves.

6:40 AM: Finally on the road. Hubby doesn’t listen to any stations with traffic since they’re always wrong. We start the 30 mile drive to the hospital quiet, but then we generally start mocking other drivers or talk about how we really need a new car. Or a new couch. Or a new mattress. He usually reminds me at this point that I need to e-mail the Bengal Fan’s youth leader about a ride home since Hubby needs to stay with me. We talk about the traffic and which exit to get off. We drive through the not so nice parts of town, but always past Graeter’s production facility. I tell him what kind of ice cream I’ll want that afternoon (coconut chip). I never vary the flavor, but it’s our routine. We watch the kids walk to school and he asks of the kids are caught up at home. Yes, they are. If we are lucky enough to be running early, we stop at Dunkin Donuts for a bagel with cream cheese. I save it for my lunch since I hate the one they give me at the infusion center. Otherwise, it’s straight to the hospital.

7:53 (or so) AM: John drops me off at the outside door to the infusion center. I lug my backpack for more weight training. It’s not a long walk, unless your hemoglobin is low. Then it’s still not long, just breathtaking. I see Nancy, one of three PCA’s who I would venture to guess are the sweetest and kindest in the world (my PCA is nicer than your PCA). We chat while she checks me in. Then she calls Karen, another of the sweetest PCAs ever, to take me back.

8:00 AM: The drill begins. I lug my stuff to the scale and get weighed. I hate this. Chemo patients should not have to be weighed. Oh, I know we need to so pharmacy can calculate the dosages for all the meds, but a little known fact is that the majority of chemo patients GAIN weight. Thank you steroids and carbs. Then I am escorted to my throne for the day, a recliner, which sits across from Karen and the Angel’s desk where she takes my BP and temperature. As if on cue when she’s done, the Angel appears and we get started.

8:05 AM: After hugs (yes, hugging your nurse is mandatory) and unpacking, we get started. Angel draws the labs quickly so we can get the results quickly. I have an 8 hour day at the center and the sooner we get started, the sooner I get to go home. Once the labs are drawn, I heat up my Cream of Wheat and fill my quart water bottle. I also decorate Ivy for the day. I am the only patient who does this and some of the other nurses come back to see Ivy’s attire for the session. Karen brings me my pillow and warm blankie. Snoopy and the Doll cuddle with me while I am set up on my first saline infusion. Because of the cisplatin, I have to have a half liter of saline before chemo and a half liter after. While I eat and soak up my fluids, we review my medical chart. I love it when we get to the allergies. It’s a joke. My list of allergies is longer than the list of meds I’m on. For some reason, Angel and I always find this amusing.

8:55 AM: Labs are back and are good. Premeds are started. Angel always assumes my labs will be good and orders the premeds. This is also the time I get my first dose of IV Ativan. Ativan is usually an anti-anxiety drug, but some chemo patients find it eliminates nausea as well. I get my Ativan, my Emend (anti-nausea), Prevacid (anti-nausea), Decadron (steroid) and Benadryl (anti-allergy). Benadryl doesn’t make me sleepy. I’ve taken so much of it over the years for my allergies, it has little effect at 25 mg. Mixed with Ativan, however, you get a nice mellow feeling.

9:50 AM: Time to pee; a first of many trips. This is usually when Karen asks about lunch. I always order a ham sandwich with this dinky cracker slice of cheddar cheese. The lunch is rounded out with unsweetened apple sauce and Snackwell cookies. You get your choice of chips (I take Cheetos) and a drink. Usually, Hubby brings me lunch so I eat the Cheetos, drink the drink and save the lunch for B-Man. He likes it.

10:30 AM: Premeds are done. Angel dons her nuclear fallout gear to set up my first chemo treatment. After checking with another nurse that I am getting exactly what is prescribed, she hangs the Gemzar. Gemzar doesn’t really bother me until Saturday after chemo. Then I start rocking with chills and fever. These drugs have such lovely side effects. Usually, I’m watching Netflix on my Kindle and don’t realize that it’s time for the Gemzar. Sometimes my mom comes to sit with me and we get to chatting. To say I’m clueless is correct. I’ve probably finished my first quart of water am off to the bathroom – again.

11:20 AM: Gemzar is done and I go to the bathroom and fill up the water bottle. It’s time for the first of 3 cisplatin infusions. They are done in increasingly stronger doses, with the first being 1%. I am tied to my recliner because my BP will need to be taken every 15 minutes. This is annoying because I have to undo myself from the BP cuff every time I have to pee. And because of the amount of fluid I’m consuming, I have to pee – a lot. This is also where Snoopy comes in. Snoopy likes to laugh in the face of chemo, especially one that is light sensitive. I take 2 Tylenol to offset the hot flashes that sometimes accompany the cisplatin. It’s not an allergic reaction, just another crappy side effect.

11:50 AM: Hubby arrives! Actually, he needs to be there. Since I had such a bad reaction to the carboplatin and was “by myself” (Angel was with a patient and Hubby was out walking) and was unable to press my call button, I am no longer allowed to be “alone” during cisplatin infusions. He brings my lunch and we eat while I’m still upright. The BP cuff continues its annoying pump up every 15 minutes.

12:05 PM: Bathroom break. Hubby and I look for someone to reattach me to my BP cuff before it pumps up again.

12:20 PM: Cisplatin #1 is done and it’s on to bag #2. This one is 11% and lasts for a little over an hour. The infusions go slower, just to be on the safe side. Snoopy laughs.

1:00 PM: Bathroom break. I get a second dose of Ativan by IV since I’m starting to get nauseated. The Dammit Doll gets smacked. Snoopy laughs again. I’m not amused. BP cuff gets reattached. Hubby starts looking for an escape.

1:20 PM: The Chaplain for Oncology, Dave, visits. Hubby and I see him for regular “counseling” every infusion. He helps us work things out. Dave always reminds Hubby he “can’t fix me.” Dave is spot on with his observations and I always feel better talking to him, but given the amount of medication in my system, I generally fall asleep and Dave and Hubby get some much needed quality time. Angel hangs bag number 3 of cisplatin, which will run for 2 hours.

2:15 PM: Bathroom break, with help. Legs are starting to get wobbly. Where is Hubby? Angel watches to make sure I make it to my destination okay. Fortunately, it’s about 10 feet. At this point, I consider the walk more aerobics for the day. Thank goodness for Ivy. She keeps me upright. I notice I’m on bag 3 of cisplatin and wonder when that happened. When I get back, Snoopy laughs. I smack him with the Dammit Doll.

2:30 PM: Time for Netflix. I’m starting to get agitated. I want to go home. Actually I want my coconut chip ice cream. Hubby comes through. I watch Netflix while savoring my ice cream. I laugh at Snoopy. Angel brings an ice pack. We keep one in reserve in case I get warm. It goes on the back of my neck. It works.

3:30 PM: Cisplatin is done. Snoopy and I both laugh. The last half liter of saline starts. This runs for an hour. Now that the BP cuff is off, I go the bathroom. Legs are still wobbly. I want to go home.

4:30 PM: Last infusion is done. Hubby has filled my water bottle for the ride home. Angel has my appointments for follow up fluids and labs. She also has the schedule for after chemo meds which she reviews with Hubby since I am now a a babbling idiot. I start crying because I feel so lousy. Hubby packs up my backpack and carries it so he can get his weight lifting. Angel makes sure Hubby is holding onto me because I wobble when I walk. I hear Snoopy laugh and try to punch my backpack. I miss. I think I’m losing it. Hubby puts me in the car and we head home.

5:45 – 6:15 PM (depending on the traffic): We arrive home. I hug my babies and collapse on Momma Renie. She knows how I feel. She sends me to bed and finds out how she can help Hubby before she leaves.

8:00 PM: Hubby wakes me up for meds. I hate this. I know I need them, but I was sleeping. I feel like crap and know that the next several days will be a struggle. Yet, without the chemo, the Beast will surely kill me. When this is over, I ought to be able to bench press a Mack Truck, since, as they say, “What doesn’t kill you makes you stronger.”

Now I will be the first to admit not every person experiences chemo in this way. I certainly chose the dramatic route, but I also know that I’m on extremely harsh drugs. As for Snoopy, I think he knows that a little humor goes a long way in making chemo bearable. So do paper snowflakes, Graeter’s and a big hug from God.

Great Expectations

I had thought about writing some profound Christmas blog, but I’m not feeling profound.  I’m feeling nauseated.  Nausea and deep thought don’t play well together.  It’s a lot like a couple of two year olds in a sand box.  Everything’s good until someone throws sand, then watch out.

I had a good day today.  I watched the B-Man play basketball (and his team won), then went to breakfast to celebrate the Ultimate Bengal Fan’s Forever Family Day.  Then I was able to head out with the Best Husband Ever to do some Christmas shopping.  I was out for over 6 hours and I don’t need a nap.  Tums, yes, but not a nap.

Christmas is tough when you have cancer, especially when it’s a recurrence.  I spend a lot of time trying to figure out how to make it awesome for the boys without going overboard.  It’s a balancing act and I’ll be honest, I’m not very good at it.  I want to get them everything, take them everywhere and watch every Christmas special.  I’ve bought more Christmas movies this year than any previous year (stupid Netflix), just so we can spend time together.  I want to keep them home from basketball and youth group so I can be with them.  I’m gone four days out of the first seven of each chemo infusion so I feel like I’m always gone.  When I am home, I feel like I live on the couch, napping.

The worst part of it is that I feel guilty.  Mom guilt is the worst.  I should do more and be more.  But I can’t, because the stupid chemo has to be extra toxic to kill the stupid cancer.  And at this point, the stupid chemo isn’t doing a very good job of killing the stupid cancer.  I guess the chemo is too stupid to know which cells to kill.  Perhaps I should draw it a picture or let it use the GPS on my phone.  Maybe it needs its very own “tour guide” to show it the way.  As I said, it’s stupid.  And despite its being stupid, I still feel guilty.

People ask me what I want for Christmas.  My first response is “A cure for cancer,” as if anyone could actually give me that.  I feel a bit like Ralphie in A Christmas Story.  Remember the scene when his mom asks him what he wants for Christmas and he tells her he wants to Red Rider BB gun with real carbine action and a compass in the stock and she tells him he’ll shoot his eye out?  Then Ralphie says he was kidding and would be happy with some Tinker Toys.  I’m Ralphie.  I really want a cure for cancer, but I’d be happy with some new stainless steel cookware or a gift card to Kohl’s.

What I realize is that I need to let go of my expectations.  If I’m going to trust God on this journey, then I need to TRUST Him.  That means that my expectations probably aren’t the same as God’s plan.  It means letting go of what’s happened before, accepting what’s happening and knowing that God knows what will happen and has it under control.

If I let go, my expectations won’t disappoint me.  That’s not to say there won’t be some disappointments along this road.  There will.  Even when I finally reach remission (because failure is not an option here people), there will still be disappointments.  Life is full of them.  The trick is to not let the disappointments become the focal point of your life.  They’re just part of the ups and downs.

So while I’d really like a cure for cancer, which would just exceed my expectations on so many levels, I’d also like a digital camera, some snowmen to add to my collection, a Life is Good shirt and some jewelry to give me some bling.  Any of those would make me happy and actually exceed my expectations (because that means that my family actually listened to me when I told them what I wanted).

While my life is not where I expected, it’s not disappointing.  I have a wonderful husband, two beautiful sons and am still blessed to have my mom.  I am surrounded by an incredible network of friends to are willing to step up and help out.  Combine that with the gift of Christ in the manger and I am bound to have the best Christmas ever.

May you find love, peace, health and happiness in the miracle of Christmas.

 

 

Every Girl Needs a Posse

With Thanksgiving being so close, I did what most people do. I began to count my blessings. Of course, I count my wonderful husband, amazing sons and devoted Mom among my greatest blessings, but I also began to think about that core group that keeps me going. These are the people who link arms to keep Satan away and provide me with the strength to keep putting one foot in front on the other. It occurs to me that every girl (and guy for that matter) needs a posse.

Back in the old West, the sheriff rounded up the most trusted citizens to help him catch cattle rustlers, bank thieves and other nefarious neer-do-wells to maintain law and order. These men were duly deputized to hold up the law and do everything they could to ensure that justice and order were kept. In the same way, my posse does everything it can to ensure my life has some semblance of order and they support me just like the posse supported the sheriff.

At this time of giving thanks, I’d like to give a shout out to my own posse and publicly acknowledge their ongoing love and support no matter the season.

Despite being at Learning Tree together for eight years, it wasn’t until three years ago that Coach Cathy and I truly became acquainted. Shortly before my hysterectomy, she introduced herself and explained she’d had one a few years before and was a breast cancer survivor. After my surgery, she checked in with me and once it was determined that I did have cancer, I asked her to be my “Coach.” She agreed and became the person I called when my scalp itched before my hair fell out. I cried on her shoulder when I felt like I’d been scraped off the bottom of a boot. I rejoiced with her every time my tumor marker went down. She was my cheerleader and never let me feel too sorry for myself.

As I face my second battle with cancer, Cathy has moved from “Coach” to Chief Cheerleader. During the long weeks of continual testing following my diagnosis, she let me cry on her shoulder with astounding regularity. However, one Monday at co-op, she quickly announced that we were done crying. It was time to laugh. And I’ve followed her advice ever since, even to the point of dressing up my IV pole as “IVan Polesky,” complete with a dapper hat. We have eaten vanilla pudding out of a mayonnaise jar and made jokes about cancer. She is the first to stop a pity party since a party only truly exists if there are margaritas involved. I love Cathy and am eternally grateful that God placed her in my life. It’s so much fun to have a friend who can look at you and say, “Cancer sucks,” and knows it’s true.

If Cathy is my cheerleader, Mamma Renie is my “second mom.” She is the first to tell me on Sunday morning if I look too tired or if I’m looking fabulous. She and her husband Dan are surrogate grandparents to the Ultimate Bengal Fan and the B-Man. I never worry about them with Momma Renie. They spoil them more than their own grandmothers. Renie is often at our home at 6:30 on a Wednesday morning to send hubby and I off with hugs and greet the boys with a smile on chemo days. Renie is another cancer survivor and when I look at her and say, “I don’t feel good,” (imagine this with a 4-year old whine in my voice), she gives me a hug and lets me cry knowing that I really don’t feel good and there’s not much that can be done about it. I value her wisdom in my battle. When I complained about having metal mouth (a metallic taste that some chemotherapy drugs cause), she immediately recommended Skyline Chili. It works. I tried it today. Two chili cheese sandwiches and a sweet tea cured metal mouth for a couple of hours. It’s true kids. Your elders really do know what they’re talking about. I’m thankful for my second Mom who knows what I need to feel better.

While the boys love hanging with Renie and Dan, the also love being with their second family, the Finke’s, which are led by my good friend “Second Mom Kelley.” Kelley truly is their second mom. They walk in and and make themselves right at home, which gives me peace of mind. Not only does Kelley create a nurturing environment for them, she also gets them to do their schoolwork. She’s been at this homeschool thing so much longer than I have, she even has B-man’s evasive tactics figured out (I doubt there’s anything she hasn’t seen). The other day at co-op, we were talking about arranging rides to a basketball tournament and I began crying. I feel like I am asking too much of my friends. She explained that this is what friends do. They figure out a need and respond to it. She is a true friend, sister in Christ and another mom to my boys. I am constantly amazed that God brought her as a friend, not only to me, but as someone my children could feel safe with and love.

If you’re lucky, you have at least one friend you’ve been connected to at the hip – literally. While we’re not connected physically any longer, my “Sister Sue” is as much as part of my life as a real sister. When I was in college, we were together all the time. If we weren’t, people asked why. I can’t tell you how much Wendy’s we ate. Fortunately, our tastes have improved and we prefer places like “The Cheesecake Factory,” for sharing meals.

Like a true sister, she cries with me, loves me, shares my deepest fears and never judges me. She loves my kids as if they were her own nephews (and I am honored to be Aunt Shelli to Matt, Sarah and Kate, whom I love like my own children). No one understands my frustration, fears or puts up with my foolishness like my sister. And when I go to the dark places, she tells me she doesn’t have time for my crap and to knock it off. Only a sister can do that and I love her for it.

The person pictured above is as important as any of these other women. She is my “Angel in Blue” and I can honestly say that she is truly a gift from God. God knew I’d need someone a bit crazy, but loaded with love and compassion to poison me on a regular basis. Sharon Sanker is that person. I remember when I met her. She told me we were in this together. When I recurred, she told me we were beating this together; period, end of discussion. While all the nurses at the Cancer Institute are incredible, Sharon is special. She loves IVan and liked my idea of giving him a twin sister IVy (complete with my old wig). My hubby bought me a laughing Snoopy for chemo (shake him and he laughs). Sharon and I shake him throughout my infusions, not only to “Laugh in the face of chemo,” but just to lighten the mood. Let’s face it, chemo is serious. I can’t handle too much serious when I’m being poisoned. Sharon lets me be silly, as silly as I need to be. And when it’s time to cry, she hugs me and tells me it’s all going to be okay. Then she tells me to wipe my eyes and start kicking butt.

These amazing women all play an incredible role in my life. While they let me blubber a bit, they mostly kick me in the pants and tell me to kick cancer’s ass and show it who’s boss (well, not Kelley in those words, but she does say something more gentle that makes the same statement).

There’s a “saying” that goes God doesn’t give you more than you can carry. He doesn’t. When it seems like to much, He gives you a really great posse to help carry the load. So when I give thanks on Thursday, I will be thanking God for Cathy, Renie, Kelley, Sue and Sharon. The load is so much easier to carry when your posse has your back.

Climbing out of the Pit

Hitting bottom is not fun. It hurts – badly. I don’t recommend body slamming unless you have the body of a superhero. When you hit bottom, you generally don’t flutter down softly like a feather, you hit it full force and there’s nothing to break the fall. If you’re like me, you land face down and get a mouthful of mud on top of the indignity of laying spread eagle at the bottom of a huge hole. It’s the end of a long line of bad things.

Sometimes, it’s easy to get out of the pit. The ground is spongy and you can get a decent jump to catapult yourself to a limb or other hold to pull yourself you. Or, if you’re like me, you just lie there. After all, there’s no place left to go. You’re all ready as low as you can go. Why tempt fate? Better to wallow in the pit with the worms and slime then to run the risk of sliding back despite your best attempts not to. And why not stay in the pit. Blood clots, liver biopsies, brain MRI’s, failed chemotherapy, all pushed me down further and further into a dark place that I felt like no one could reach. Not my children, my mom, my husband or even God. NO ONE. And I preferred it that way. At least, I wasn’t going to have any more issues.

I will admit, wallowing in the pit, while it can be strangely comforting, isn’t a good place to stay. Well, unless you like worms, slime and other creepy crawlies. Personally, I find them a bit, well, creepy. And while mud is supposed to be good for the complexion, I’ve never read any studies on the dental benefits of mud. So what’s a girl who’s been through the wringer to do?

Well, this girl didn’t do anything – at least at first. I stayed in that pit. It was safe, relatively speaking. Yes, it was slimy, and dank and definitely gloomy. But I knew I wasn’t going anywhere else. I was at rock bottom. Rock bottom isn’t a bad place to be. Hard, yes, but not necessarily bad.

I’d like to say I had an epiphany that got me moving out of the pit, but that would be a lie. It was more like my vivid imagination working overtime. I could see myself in the pit with these creatures dancing around the top of it. Think the Habersham Brothers from Horton Hears a Who. They were the evil monkeys who were going to roast Horton is Beezelnut oil (which I’m sure is loaded with trans fats). They reminded me of evil minions out to do Satan’s bidding. Unfortunately, I just can’t imagine Kevin, Stuart or Dave (the minions from Despicable Me being that evil, despite being actual minions.

So as the Habersham Brothers are doing their dance around the pit, who should appear but the Archangel Michael in all his glory. I will vouch for the fact that he is glorious. I can’t begin to imagine what the glory around the throne of the Almighty must be like. When Michael comes with this blazing sword and his angel army, you don’t lie in the pit and tell him you’re too tired, scared, or overwhelmed to move, you move. And if you don’t, he moves you. I was swept up on the wings of angels to the edge of the pit, with the Habersham Brothers standing their with their mouths open catching the flies coming up from the pit. Michael made it abundantly clear that I was now “off limits as a child of the Most High.” Suddenly, everyone was gone and I was alone, standing in the grass, and at peace.

If you’ve been reading my blog for long, you know that God has to hit me with a 2×4 to get my attention. An archangel with blazing swords qualifies. However, I never felt chastised by God for not being strong enough, or brave enough or faithful enough. Jesus sympathized with my plight. He reminded me that he was alone in the Garden, sweating blood, praying that he could avoid death. Then he was beaten, scorned and forced to carry his cross, only to be nailed to it as a common criminal. He was alone. Yes, his mom was there as was John, the beloved. They were there, but were unable to hold his hand or offer any comfort. In his last hours, even God left. My savior was ALONE, tired, scared and dying. He was separated from the Father, whom he’d been with forever. I cannot begin to fathom the depth of Jesus’ pit. I can’t even imagine being that alone.
Talk about dark, scary places.

This is why I am out of my pit. Not because Michael flew in and saved me, although I am eternally grateful to God’s angel army. No, it’s because Christ said, “I know what it’s like to be alone; to be scared and not know what’s going to happen next. I know the worst. It’s being separated from God. I promise you will never be separated. I know it feels like it, but you won’t. I am always here, even when you don’t think I am. I’m ALWAYS here.”

This doesn’t make facing cancer a walk in the park or have me thinking that life is all sunshine, lollipops and rainbows. It isn’t. It’s full of nausea, fatigue and too many trips to the Cancer Institute to count. It’s still looking at my kids and hoping I’ll see them graduate. It’s still striving to be the best wife, mom and daughter I can be despite feeling like crap. It’s deciding to have a positive attitude even when you feel like crap. I’m still convinced it’s for times like these that Ativan was invented. It gets rid of the nausea and if you don’t fall asleep, you don’t care. I think God’s okay with that for brief periods.

I am better able to focus on what’s important for today. Actually, I live my life in two week increments, starting on Wednesday. I get chemo on Wednesday, take a bunch of steroids and nausea meds on Thursday, go for fluids on Friday (and more meds for nausea) to get through the weekend of spending time with my family and attending worship, go to co-op on Monday and then get more fluids and nausea meds, rest of Tuesday (and attempt to catch up on school since I’ve been at the hospital), then get labs and MORE fluids and meds on Wednesday. Then I spend the next 7 glorious days at home, trying to drink enough fluid and having fun with my kids. I let the little things slide. They just don’t bug me. They aren’t important. On Wednesday it starts all over again. Life is slowly getting a rhythm. Not the one we want, but it’s still a rhythm.

It’s good to be alive, cancer or no cancer. I’d take life without cancer, but that’s in the cards right now. What is in the cards? A life that’s speaks to others. May my life speak as a blessing.

Note: I tolerated the new chemotherapy well. Cisplatin works best with Gemzar as was considered the gold standard for treatment 5 years ago and still is, but has horrible side effects. I would appreciate prayers that I don’t react to the cisplatin. I have high hopes of remission with this cocktail – shaken not stirred of course.

What’s Your Color?

I promised myself I wouldn’t go there this year, yet here I am. I told myself I have to immerse myself in my own battle and not try to fight any others. Yet, here I am. I know I’m too tired to really fight effectively, but I will try. Someone has to.

In case you haven’t noticed, it’s Breast Cancer Awareness Month. Despite the brilliant reds, oranges, yellows and tans of the leaves and the gorgeous sunsets, all I see is pink. Bubble gum, Pepto-Bismol pink. The Ultimate Bengal Fan commented the other day that orange and pink should not be worn together, and this is the kid who would wear stripes and plaids.

It seems that cancer has been boiled down to a color. What color is your cancer? Are you pink, blue, teal, yellow, purple, green, white or some combination thereof. Are you saving the ta-tas or some other body part? A fellow teal sister on a Facebook group I’m a part of commented on the tasteless “Go Braless” campaign to promote breast cancer awareness. She thought we should go commando to bring awareness to gynecologic cancers. Actually, guys could join in with this as well. Prostate and testicular cancer are below the belt as well.

I think the people who come up with these “campaigns” mean well, but they don’t think things through. When you’re fighting for your life, you aren’t thinking pink, teal, purple or any other color. You’re trying to figure out when you can take your next anti-nausea pill. You’re trying to decide how you can hide the overwhelming fatigue from your family so they don’t worry. Some days you wonder how you’re going to haul your butt out of bed to go to the bathroom, then you hear some perky AM news host talk about how they’re painting the town pink with bras. Hey, I would gladly go braless, but as a former boss of mine used to say “You’ll take your eye out ” (I’m rather well endowed).

I’m tired of hearing about moms who have breast cancer and take care of their families. Lots of people with cancer go through therapy and take care of their families and never receive one bit of recognition. I certainly don’t blog about my journey for the recognition. Truth is that the vast majority of cancer patients deal with their families and some have to work to keep their insurance or a roof over their head. Those are the real heroes. The ones that go through treatment and keep life going. They should get a gold crown. They deserve the recognition. Not that the mom with breast cancer doesn’t – she does. She’s doing the toughest job imaginable while fighting cancer. She just shouldn’t be singled out when there are so many others who do the exact same thing.

Cancer isn’t a color. It’s a wretched disease that destroys your body, mind and spirit and leaves families shattered. If you’re lucky, like I am, you have an incredible support system that holds you close when you can’t do it on your own. I have a God who is immensely powerful to save and holds me close. I have friends who will gladly stay with my children so I can get my infusions. Yesterday I discovered that I am in need of fluids on the weeks I don’t get chemo. This means a 90 minute infusion of saline, along with some extra steroid and anti-nausea meds. My quick 45 minute trip has turned into a “3 hour tour.” Fortunately, the 3 hours I spend affords me a few days of actually feeling good before I descend back into the depths of feeling lousy.

It just seems wrong to try to limit cancer to a color. It’s as if tying a deadly disease to a color makes it less threatening. How can something pink or blue or yellow take lives every day? I guess it’s like a tiger in the wild. They are majestic to look at, but I certainly don’t want to meet one up close.

Fortunately, we’re about halfway through the “pink month.” Then we can get on with life again. Until then, I will politely decline when asked if I want to give to a another “pink ribbon” charity. I will explain that pink doesn’t represent all women’s cancers. And I will laugh at the lack of color coordination on the part of the NFL. Pink shoes with football uniforms just doesn’t do it for me. And don’t even get me started on how much of what’s raised actually goes to patients. That’s for another rant on another day.

The color of cancer is reflected in the eyes of every patient, male or female. It’s reflected in the color of their skin since cancer is an equal opportunity destroyer of lives. Cancer is the plague of the 21st century. The only color I want associated with it is whatever color the cure is. Then, I will proudly wear the color of cancer. The color that caused it’s demise.

What I Learned from Cancer

I know, it’s been a while. And dear reader, I know you’ve been longing for my nuggets of wisdom (or lack thereof). It’s not for lack of trying. It’s just that sometimes life gets in the way of my best intentions. I have been getting ready for school (both here at home and for Learning Tree (#best homeschool co-op EVER), vacationing with one of my dearest friends, and trying to generate some income writing.

However, with a new school year comes looking forward to learning new things. The Ultimate Bengal Fan is doing an in-depth study of American History and I love hearing what he’s learned. B-man is telling me all about Ohio History. All this learning at the homestead has me thinking about what I’ve learned and what I continue to learn on this journey called life.

A couple of days ago my Facebook account showed me my memories from past years. My post on August 23, 2012 went something like, “Visit to the GYN ended with finding out I have a cyst on my left ovary. Ultrasound next week. Nothing like 5 years of fertility drugs to give you side effects.” My post was my usual “Who me, worry?” I remember that day like it was yesterday. I sobbed for hours on end. I KNEW I had ovarian cancer. Don’t know how, but I did. My entry into the world of cancer was swift and painful. I’m still looking for a way out that doesn’t involve ceasing to be an active participant in this world.

I do realize, however, that cancer is a great teacher. Yes, that is a positive and seeing as there are so few, it does bear mentioning. I have learned a great many things; some about myself and some about others. All of them have shaped how I look at the world.

1. Cancer is a jealous lover. Remember the movie Fatal Attraction? Glenn Close played a creepy jilted lover. Cancer is a lot like that. It does not go way quietly. Trust me, there’s nothing quiet about chemo. From the beeping of the IV’s to the quiet moans of pain to railing at God and the universe, there’s no peace. And just when you think you’ve got a chance at staying in remission, it rears it’s ugly head like Jack Nicholson in The Shining and says, “I’m back!” No, mine’s not back, but I hold no illusions that I’ll be able to avoid this intruder for the rest of my life. When cancer wants to return, it will. And if it doesn’t, hooray for Dr. Downer.

2. Family is a relative term. Family is more than who you’re related too. My family of origin is relatively small. When I was diagnosed, my mom and cousin Ginny were really the only two people I spoke with. My husband’s immediate family is a bit larger. My mother-in-law made the 3-1/2 hour drive several times to help me after a chemo treatment and took me for fluids. However, there were other people who surrounded me and became as important as those who society would call my “family.” Momma Renie took me to an ultrasound, stayed with me when I got fluids and loved on my kids (and Mr. Dan helped out too), as well as dried a lot of tears. Sister Sue was there as was my niece Sarah to help out with transportation and child care, loving me as only a sister can. Second mom Kelley stepped up and loved on my children as only a mom can while I was at chemo. Coach Cathy quickly became my trusted confidant when I just couldn’t take one more infusion. While my BFF Denise only visited once, she made it count. She came a few weeks before Christmas and helped me bake cookies and put up the tree when she should have been doing that for her own family. My sister in teal, Lisa, whom I’ve never met except on Facebook, called several times with orders “Do NOT quit!” You don’t say no to Lisa. These people surrounded me and my family and loved us in a way that I still find incredible. God puts who we need in our life and they aren’t always a relative.

3. Laughter really is the best medicine. I love good humor (and the ice cream’s not bad either). In my opinion, my dad had the greatest sense of humor. Even now, I’ll say something and my DH says, “That’s a Budism.” There were a lot of days when I’d think of something my dad would day and would laugh (imagine a 6 year old singing “Walking in My Winter Underwear” to the tune of “Winter Wonderland” and you’ll get the idea). My B-man is a natural comedian and it was healing to my soul. I learned that when life is crappy, find humor. Life probably won’t be any less crappy, but if you can make fun of it, it’s easier to get through.

4. You are always stronger than you think. I can’t tell you how many people tell me that I showed amazing courage during my illness. Honestly, it didn’t occur to me not to be any other way. I had two young sons who needed a mom and a husband who, despite being an incredibly gifted engineer, has a tough time keeping things rolling at home. They needed me. So I just kept putting one foot in front of the other. Eventually, you find a rhythm even if it’s just walking from the bed to the couch, while stopping to get a cup of coffee. It’s like Nike Just Do It! I think God will let me know when it’s time to stop. Until then, you fight like hell.

5. Life is full of choices, not all of which you can control. We all make choices every day. What to wear. What to eat for dinner. What time to go to bed. Those are easy. The hard ones aren’t as easy. The toughest choice I had to make was when Dr. Downer told me that he recommended two additional chemo treatments beyond the 6 initially prescribed. My DH and Mom were supportive, but Coach Cathy cried with me. I was all ready so beaten down. I chose to do number 7, but drew the line at number 8 when my body was so broken that another treatment would have landed me in the hospital. Dr. Downer ultimately decided number 8 was not an option given my body’s physical state, but I’m not sure what my decision would have been if it had been presented to me. Fortunately, I didn’t have to make that choice, but lots of other teal sisters do every day. The choice of living while being poisoned or dying from the Beast doesn’t really seem like much of a choice.

6. God is always in the storm. I never felt closer to God than when I was battling cancer. Being in the pit, you decide to shun God and “punish” Him or hang on for dear life. There’s a song I love which goes something like this “Sometimes He calms the storm with the words ‘Peace, Be Still.’ He can, but it doesn’t mean He will. Sometimes He holds us close and lets the wind and waves go wild. Sometimes He calms the storm and other times He calms His child.” He calmed this child in ways I never thought possible. Yes I was nervous, but never afraid. God had this and I was just along for the ride. I vividly remember placing everything in His hands and walking away before my surgery. Unfortunately a few weeks after chemo ended, I snatched it all back. I need to remember that control is an illusion. How I chose to respond is what matters. That applies to everything, not just the Beast.

So I have, like my quote, begun to grasp that the unexpected happens. Courage, grace and humor go a long way to making life more tolerable. Those same attributes will help me as I continue on this journey and as I move onto my next. I am meeting with a dietician this week to get a definite weight loss plan in place. The weight has got to go. I got rid of cancer so now it’s time to get rid of the flab (vacation pictures can make you realize what you really look like). The Beast wants me to keep the fat. You know I hate listening to the Beast so the flab has got to go.

Here’s to lessons learned. May we never stop learning.