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.

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.

Time for Plan B

Yesterday I went to get my second infusion of my new cocktail (shaken, not stirred). Labs were good, premeds good and Gemzar (the first part of my cocktail) good. Then came the fun, I started on my desensitizing doses of carboplatin. Carboplatin, while extremely toxic to ovarian cancer, is also toxic to the body. So they give it to you in small, incremental doses to avoid an allergic reaction. For some people this works, but for others not so much.

Unfortunately, I ended up in the “not so much” group yesterday. Despite all the precautions, I ended up with a severe allergic reaction yesterday. Now, I’ve had allergies my whole life, with asthma to boot if I get around too much mold, so an allergic reaction for me isn’t a huge deal. But when I start with an asthma attack, intense itching and a body that suddenly is the shade of a just picked vine ripened roma tomato, there’s a problem Houston. Fortunately, my Angel in Blue was right there and started pumping me full of Benadryl, Prednasolone and a whole host of other drugs to offset the reaction. The Lovely Liz even had to call Dr. Downer in surgery to be sure they’d thought of everything. In the end, I was finally able to go home. Exhausted from the Benadryl and Atarax, but racing from all the steroids. Life can be grand at times.

Just a side note, if you get too much Benadryl, your legs will twitch – BAD. It lasts about two hours and it’s not fun – at least for you. My hubby and the nurses enjoyed the show.

So today I’m in flux. It’s a bad place to be. The Lovely Liz called to check on me this morning and assured me that she will be working with Dr. Downer to get a Plan B in place. She’s hoping to be able to call my Angel in Blue next week to give her the plan so she can review it with me. I tend to take things better from my Angel than anyone else. Maybe because I trust her more than anyone else. She NEVER lets me down even when down is the only place I have to go.

I’m worried about the next drug. What will it do to me? Truth be told, I think I can handle anything except losing my hair. How vain is that? I like the way my hair looks now. I don’t like the way I look bald. One of the drugs on the agenda is called Doxil. While I would get to keep my hair, I would get other lovely side effects like mouth sores (we’re talking liquid diet here), rashes and peeling skin. Sounds lovely, huh. Wondering if this is a valid trade for killing ovarian cancer, my life for the cancer’s.

I’ve come to realize that cancer doesn’t kill people. It’s the chemo, or rather it’s side effects. Nerves are damaged, kidneys fail, hearts become less effective, asthma gets worse, blood becomes anemic. It sucks! While I really want to believe that the chemo will put this cancer back into remission and I will be happy dancing with NED again. However, what’s the collateral damage to my body and my family? I dream of watching my boys grow into strong young men and become parents themselves. I want to walk with my husband well into our 80’s. I used to take that for granted. Now I can’t.

So while I wait for Dr. Downer to create his new cocktail (again, shaken not stirred), I will spend time with my family. I will play with my kids as much as my body will allow (Gemzar makes you very tired), I will date my hubby, I will enjoy co-op, I will visit with friends, I will be creative, and I will try to find something that I find hilarious every single day. Mostly, I will do my very best to trust that God has me tight in His hands. Early today, I posted on Facebook that I felt like I was dangling from His fingertips, just barely able to hold on. I will trust that He has all ready put the Plan B in front of Dr. Downer. I will trust that what little Gemzar I’ve had is killing cancer cells, even if it’s just a few of them.

Plan B wasn’t on my radar. Now I have to rearrange my life to accommodate something I don’t know yet. Until then I will do what I have to do; put one foot in front of the other and just go with the flow. And while I’m at it, I’ll make the most of the moments. And maybe just start that book.

Limbo Land

Life has been a mix of whirlwind and waiting these last few weeks.  It’s been a whirlwind in that it was only a month ago when the blood clots in my legs began to endanger my life.  It was those same clots, however, that triggered the alarm that the Beast had returned.  Since my last post, I have undergone a liver biopsy (not the worst thing, but definitely not for the faint of heart) and an MRI of my brain (which showed nothing).  Both were more of a CYA thing for Dr. Downer, but definitely raised my stress level beyond anything I’ve experienced in my life to date.

The liver biopsy was to confirm that the cancer was, in fact, ovarian cancer.  I couldn’t imagine God allowing me to go through another type of cancer, but hey, it’s the oncologist’s party not mine.  The recovery took longer than the actual procedure (20 minutes versus 4 hours in recovery then two days of being a couch potato diva).  The pathologist said the biopsy was a perfect match to my previous one taken at my hysterectomy.  I’m always glad to oblige a doctor.  Makes both our lives easier. So once we had that, Dr. Downer confirmed his treatment plan with one caveat.  Get an MRI of my brain on the very, very, VERY low risk outside chance the cancer went too far north.

If you’ve ever had an MRI, you know those tubes aren’t huge.  Having a plate over your face and not being able to see out can be distressing.  Fortunately, the tech put a washcloth over my eyes so when I opened them (despite my hubby’s urging not to) I couldn’t see how I was crammed into the tube like a sardine.  Thirty minutes later, including the contrast IV, I was done and happily returning to my regularly scheduled programming.  A few hours later, the Lovely Liz called to tell me I had nothing but a brain in my head.  Good to know the brain is there.  Now I’ve been given the green light.  Let the poisoning commence!

I will say that I’m completely tapped out.  Coach Cathy and I were talking yesterday and I told her I was way overdue for the massive breakdown cry that should have come by now.  I have shed tears, but mostly because I feel like a lousy Mom because my kids are having to face the fear of losing Mom for a second time in three years.  I feel like an awful wife since Hubby has to deal with the worse and sickness part of our wedding vows rather than the better and health.  I feel like a moocher friend since I am always asking people to take the kids, go with me to appointments, pray for me and my family, and all the other stuff that goes along with being a cancer patient.  But right now I’m so tired I can’t even sleep.  I can’t focus.  My tank just ran completely out.  The last fumes are gone.

Yet tomorrow I will walk into Good Samaritan Hospital yet again.  I will go to the 4th floor to the Cancer Institute and begin bonding with my Angel in Blue again.  We will go through the labs, the premeds, then begin the hours long infusion process.  At least I know what to bring this time.  My laptop (for Netflix and Hulu), my grown up coloring books and nice pencils (no kid stuff for me) and some cross stitch.  Also my Lovenox injection, some Tylenol and the blanket my wonderful Mother-in-Law sewed up for me.  The look is casual.  PJ pants and a T-shirt with funky socks.  No make-up, but I generally do my hair (hey, when you haven’t had it, you tend to want to take care of it).  Oh and let’s not forget the wonderful lunch fresh from the hospital cafeteria.  Tomorrow is 1 of 12 infusions.  After I complete the first six, I have a scan to ensure the poison is doing more than killing off white blood cells and platelets.  If the scan looks good, then we go for 6 more infusions.  I’ll end in mid-March – again.  Actually, it will be very close to the end of my first chemo which was March 15, 2013.

I’m ready to say goodbye to Limbo Land and move on with life.  Today, though, is for hanging with my boys and having fun. It’s probably the last time I may actually feel good (relatively speaking since I’ve been so hyped up and overstressed the last few weeks) in quite a while so I need to enjoy it.  It’s about living in this moment and not the moments to come.  It’s about loving and living and embracing all that’s good in life.  Because even when it’s bad, there’s always something good in life.  Limbo land makes you appreciate that.  It makes you realize it’s the journey, not the destination.  It’s time to move on.

Reflections on a Year Gone By

As I write this I realize I was still in surgery one year ago today, blissfully unaware of what my oncologist was doing inside my body.  My husband and family were experiencing increasing anxiety since the surgery had gone on at least 90 minutes longer than they anticipated.  It would be at least 90 more minutes before John would be able to actually see me.  It would be at least an hour after that before I would be awake enough to know what was going on around me.  I still had a TPA injection, nuclear scan and admittance to ICU ahead of me.  To coin a phrase, this day sucked one year ago.

Today I did some of the things with my boys that I did on the day before my surgery last year.  We bought Braeden’s Halloween costume, then went to Barn and Bunk to buy our pumpkins.  Unlike last year when we had amazing weather, it poured down rain today.  After lunch at Max and Erma’s we headed home to watch Halloween specials we recorded.  Nothing major, nothing out of the ordinary unless you consider that the pulmonary embolism last year nearly killed me.  Now I love those ordinary moments.  We never know how many we have.

October 17, 2012 started a whirlwind I didn’t think I’d be able to escape.  I went from being totally out of it in ICU (those of you who visited me can attest to those 8 minute naps I took between hits on the pain pump) to walking the halls of the gyn floor.  I listened as my oncologist pulled the rug out from underneath me believing that if after 4 days I’d had no bad news, it must be good news.  “You have Stage 1C ovarian cancer.  I believe I got all of it.  You will need to undergo 6 rounds of chemotherapy as a precaution.  Here’s your report.  Let’s talk about it.”  It’s amazing that with the chemo fog I can still remember his words verbatim.

Three weeks later, with port inserted, I began chemo for what ended up being 7 rounds instead of 6.  I endured blood thinners that were injected into my abdomen, compression stockings, nausea, baldness, hot flashes, cold spells, constipation, headaches, ringing ears, blurry vision, neuropathy and a whole host of other symptoms that were supposed to be suppressed by a shoebox full of medications.  I still suffer from hot flashes (as a result of instant menopause from the hysterectomy), cold spells (from the anemia I had prior to the surgery that got worse with the chemo along with the Coumadin I take to thin my blood), constipation (chemo side effect, neuropathy of the large intestine), floaters in my eyes (thank you again, chemo), and neuropathy and joint pain in my hands and feet (kudos, chemo).  I can also add hernia to the list, but with a 12″ scar down my abdomen I shouldn’t be surprised.

I have spent the last few weeks wondering if I’ve been walking in a dream for the last year.  Then I check the mirror.  The salt and pepper hair and hysterectomy scar are the visual reminders I face every day.  The pain is a visceral reminder.  Every so often chemo fog kicks in and gives me a reprieve.  I can’t remember what I’d like to forget.  I really don’t remember much about chemo except that I was VERY sick and scared the crap out of everyone who saw me, except for Cathy.  She knew what to expect.  Chemo friends are like that.

I cleaned out my closet and room last week and packed up all my cancer hats.  They are in a box in my cedar chest waiting for me.  I got rid of my “sick” clothes I wore last year.  I just couldn’t stand to think about wearing them again.  I don’t like having my picture taken.  While my hair finally looks “normal” I’m not allowed to color it yet.  I look strange, old, tired, cancerous.  There’s something sad about the person in the mirror.  She lost a part of herself and gained a shadow that’s always lurking behind her.  I am waiting for the shadow to become commonplace so I can feel normal again.

I still don’t plan too far ahead.  The idea of having to tell my boys that we can’t do something because I’m sick again is more than I can handle.  I have made every soccer and flag football game so far this season.  I have bought Halloween candy.  I am working on losing excess weight to help me get healthy and help the hernia.  We’ve discussed visiting John’s family for Thanksgiving.  I see my doctor every 3 months.  I get my CT scan every 6 months.  Despite the 88-90% chance of being “cured,” it’s a long 10 year road.  And someone has to be in the bad end of the line, not that I’m asking to stand there.

The last year has been a dark, scary one.  I have found that I have people that I can count on and who love me.  God has blessed me with new friends, strengthened casual friendships to something stronger, and made me a better person.  I am more tolerant and less concerned with the little things (unless it’s schoolwork, then all bets are off).  I nap more and feel guilty less.  I appreciate what I have and don’t pine for what I don’t (except for a Kitchen Aid stand mixer – that I drool over in stores).  I hug my husband and sons a little longer and a little tighter.  I say I love you more often.  I am more willing to get rid of the clutter.  I’m willing to try something new since you never know if the chance will come again (hello canoeing).

Life can change in an instant.  I know that now.  I only wish I hadn’t chosen such a difficult way to learn it.