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.

Dealing with the Unexpected

Cancer is all about dealing with the unexpected. Let’s face it. No one expects to get cancer, yet it happens. And if you’re in the wrong end of the line, you’ll deal with it multiple times. I could write volumes on why cancer is an awful Beast that God needs to eradicate with a sweep of His mighty sword, but that’s been done. Sometimes it’s the unexpected that arises during cancer that makes you step back and think about why God is asking me to walk this particular path (and trust me, I ask A LOT). I try not to whine the whole “poor me” scenario since Coach Cathy has a strict limit on the number of pity parties I’m allowed to have, so I try to find those little nuggets of gold among the silt of the river. Sometimes you really have to look. Other times they come right up and smack you along side the head.

Christmas always brings unexpected blessings. This year, we were all nearly asleep around 10:15 when our doorbell rang. Hubby went to the door and found a large gift bag with a huge jar in it. The jar was a Christmas Jar and filled with money. Coins and paper up to the top. We were floored. An anonymous note accompanied the jar along with the book Christmas Jars. I’ve started the book and cried through the first 4 chapters. I also find myself crying at the thought of so many people wanting to bless my family this season. I can’t imagine who pulled this together and why everyone who donated felt led to give to us. I wonder if Mary felt a bit like this that first Christmas. Imagine all these strangers coming up to a cave bringing gifts for your baby. You know who your baby is, but still, he is a baby. I’m not sure she looked as serene as the nativity scenes and paintings make her out to be. After all, she had just given birth! She and Joseph had to be blown away by the sheer volume of blessings their baby boy was receiving.

We went to church Christmas Eve. I decided to go, despite feeling nauseated. I love the candlelight service and singing “Silent Night”. While that was moving enough, I was blown away by the sheer number of people who approached me and asked how I was and that they were praying for me. Some I know, most I didn’t. By the time I got to Pastor Brian, I was crying. As I hugged him, I was trying desperately not to use the shoulder of his shirt as a tissue. I didn’t want him to make a bad impression on those who only come to church on Christmas. When another person brought a plate of cookies just for my sons because she thought I wouldn’t feel up to making cookies for them, that was my breaking point. I cried through the whole service. It’s probably a good thing Momma Renie and Papa Dan weren’t there. I would have found Dan and cried like a baby since he reminds me of my own dad. Since he’s the head usher, that would have made collecting the offering a bit interesting with him walking down an aisle and me clinging to him like some sort of weird snake.

On Christmas, I opened my gifts from Sista Sue. She gave me an Angel of Hope. I think this is for both of us. She is reminding me to always have hope, while she remains hopeful that this cancer will be eradicated from my body. The Dammit Doll is much more practical. When you get mad or stressed, you’re supposed to slam it against the wall saying, “Dammit, Dammit, Dammit.” It’s going to chemo with me. I can’t think of any place more appropriate. I may even share it with a couple of the other regulars I know. Chemo patients are a strange lot, but we always stick together.

Last night, I reflected on my blessings. Yes, I have an incredible family, an amazing posse and friends who support all of us. But it’s more than that. I think God brought these particular blessings to me at this particular time to show me that while chemo sucks, it can be conquered. I have a choice to make this week, continue with my present course of treatment for one more cycle or switch to a new drug. Hubby and I believe that doing one more cycle of this cocktail will finally show significant results. My body is slow to respond to most drugs and the trauma of the DVT’s and liver biopsy, along with stress, make it more difficult. We’ve prayed about it and God hasn’t said not to, so we feel we should give these meds one more shot. A CT is tentatively scheduled for the end of January.

These are never easy decisions. My platelets and hemoglobin are at an all time low meaning I’m tired and cold all the time. El Nino is giving us a very mild winter, but, unlike our neighbors, we use heat because I’m always cold. My kids run around in shorts and T-shirts and I’m wrapped up in fleece blankets. But platelets can be transfused and eventually, I do get warm. Staying the course is the mantra of the day and I try to stick with it.

Embrace the unexpected and celebrate your blessings. Life has no guarantees, that’s why today is called the present. May 2016 bring you health, happiness, peace and a cure for cancer.

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.

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.

Land of Confusion

I feel like I live in a perpetual state of confusion. I’m not sure when it started, but I know it was sometime in late 2012. Like my friend Aunty Acid here, I feel like I don’t always have time to duck before it all hits the fan.

I feel like my life goes from worrying to living to being on a perpetual hold. I worry before my labs which, if you’re wondering – and I know you are – were fine last month. Just a bit higher than March, but still normal. And yes, I realize that “Normal is just a setting on the dryer,” (thank you Erma Bombeck), but it’s still nice to be considered normal for something. So after labs, I slowly reemerge to enjoy life again, only to fall into a perpetual holding pattern when something pops the bubble wrap I’ve put around myself.

Food is “popping my bubbles” lately. I’m trying a diet that “confuses” my body. Let me say this about ovarian cancer (I can’t speak for the others – thank goodness). It is NOT conducive to dieting. First you get to eat whatever you want during chemo. You might think this is great and it is, provided you aren’t so stinking nauseated that even the imagined smell of food won’t send you running for your Zofran, or in my case Ativan, hoping that it will tamp down the ickiness. Once you feel like eating, hopefully you won’t have mouth sores or suffer from metal mouth. Metal mouth is what I call the metallic taste things tend to get when you undergo chemo. I had a mild case, but I’ve heard of women who have to eat off of plastic silverware since regular flatware just adds to the metallic taste. Basically I had about 3 days during every 21 day cycle when I ate whatever I wanted. The rest of the time I lived on 7-Up, saltines, instant mashed potatoes and plain pasta with butter (carbo loading in the truest sense of the word).

Once you’re done with chemo, you get to deal with what I like to call “Chemo body.” Aside from the run of the mill issues, like profuse hair loss, you have the chubby steroid face to contend with. Yes, chemo is full of steroids so you don’t react violently to the poison. Unfortunately, your face isn’t the only thing that gets chubby. While some people lose weight, most gain weight during chemo (another LOVELY side effect of ovarian cancer). I gained a good 25 pounds on my already overweight frame. Unfortunately, for me anyway, it loves me and refused to leave (oh to be so loved)! Dr. Downer (my beloved oncologist) told me not to worry and give myself some time for my body to readjust. Okay doc, it’s been almost 27 months; isn’t time for it to readjust?

I’ve done Weight Watchers, Spark People, low fat, low carb, exercise, PT, fasting, eat only when you’re hungry, shakes, and just about anything else you can think of that doesn’t involve standing on my head or getting stuck with needles (yes, I’m now needle phobic, but that’s for another blog). So, of course, when second mom Kelley suggested the Fast Metabolism Diet, I just jumped right on that bandwagon. I hadn’t tried it so of course it will work.

The basic premise is that if you confuse your metabolism that your thyroid will fire and burn fat. The science behind it is solid. Unfortunately so is my fat. The author, a registered nutritionist, states that people can expect to lose between a half and full pound each day totally a max of 20 pounds in 28 days. In the two weeks I’ve been on the diet, I’ve gained a half pound. I think I need to talk to my thyroid and fat.

While emotionally I’m ready to chuck it for a Culver’s concrete mixer (or even a piece of cheese since there’s no dairy on this diet), mentally I realize that my body was under siege and has been through a lot over the last 2 and a half years. Actually, it was messed up before hand so it’s been longer. Logically, I realize that I can’t undo that in 2 weeks, despite my desire for it to happen. I’ve even gotten myself down to a quarter of the amount of coffee I used to drink and am learning to drink it black (I REALLY miss cream. You have NO IDEA how much I miss cream). I drink voluminous amounts of water (the B-man recently said it was my “blankie” since I take it everywhere with me), which means I am on a first name basis with the Tidy Bowl Man and am ready to buy stock in Quilted Northern. All of this to calm my adrenals, build muscle and burn fat. I can hear Jim Morrison singing “Light My Fire,” but there’s no sign of a match anywhere.

So I’m confused. Well, right now I’m hungry. There are three phases each week and I’m on phase 2. This is the dreaded “all protein and green vegetables phase” that lasts for two days (Wednesday and Thursday). I HATE this phase. If negative emotion burned calories, I’d be on the fast track to losing 10 pounds this week. By tomorrow I’ll be saying “If I see one more piece of lettuce, I’ll scream.” Actually, I screamed this morning. Not out loud, lest I wake the Ultimate Bengal Fan, but definitely in the dark corners of my mind. My mouth waters just thinking about the bowl of oatmeal I’ll have for breakfast tomorrow with almond milk and fresh blueberries and a side of baby carrots (you need eat your veggies).

Unfortunately, my body isn’t at all confused about what’s going on especially the fat. It’s hanging on for dear life. Actually, I think it’s Gorilla Glued itself to my skin and muscle and it’s not going anywhere. My dear doctor explained that sometimes our bodies don’t want to give up fat since it’s saving up for the next trauma. Seriously, I’ve had enough trauma to last a lifetime. And losing 20 or 30 pounds will still leave enough of the squishy white, well actually yellow, stuff to handle whatever gets thrown at me.

As luck would have it, I just broke my toe – literally. As I tried to help my Bengal Fan with the ice maker, a roll of sausage fell and dropped on my toes (how appropriate). So now I have to try to contend with the necessary exercise while hobbling around on my foot. I’m sure this will confuse my body to the point that it will cling onto my stores for dear life, lest I not be able to get to the kitchen for my regularly scheduled feeding (trust me, this is never an issue).

Ovarian cancer, thank you for bringing me to the land of confusion. Now if you would be so kind as to let me call AAA. I think I need an alternate route.

Fog as Thick as Peanut Butter

I’ve always loved Yukon Cornelius of Rudolph the Red-Nosed Reindeer fame. He was so blissfully ensconced in his search for silver and gold that he tended to be oblivious to what was going on around him. He came up with one of my favorite similes – “This fog’s as thick as peanut butter.” When Hermie (another great character) corrects him by saying, “You mean pea soup,” Yukon proudly tells him that he prefers his fog to be like peanut butter.

Today, my fog is as thick as peanut butter – chunky with low sugar (my personal favorite). Actually it’s been thick for a few weeks now, but today it’s beyond what I’ve experienced since chemo. I could write it off to stress. After all, my mom and the B-man both had surgery within a week of each other. While both are, thankfully, fine, stress wreaks havoc on my chemo addled brain. My stress tripled this morning when my hubby left for a conference in Las Vegas and a much deserved break from the madness at home.

I didn’t realize how much having my hubby gone would throw me until the boys and I headed out for church this morning. Since getting my smart phone two months ago, I’ve been able to feed my addiction to Dunkin’ Donuts coffee every Sunday on my way to church. I have their app on my phone and can just tap and pay. I have no idea how I lived without this. But I digress. When we go to church, we have our route that swings us past Dunkin’ Donuts then up to church. Today, I tried to turn down the wrong road not once, but twice. What makes this even more frustrating is that it’s the same route I travel to go to our co-op. Fortunately, I did get my coffee and made it to church with 10 minutes to spare. God is good.

Unfortunately, I haven’t been able to stay focused on anything else today. I can’t begin to tell you how difficult it is to write this today. It’s not because I can’t find the words, although they are elusive today. It’s because I can’t stay focused long enough to actually explain it. My brain is like a pin ball and my skull is the table. Thoughts are banging against the walls racking up points, then missing the final flipper. Fortunately, some are being caught and are being flipped back into play. God help me if my brain decides to “TILT.”

This is the first time I’ve been “on my own” since ovarian cancer struck. Actually, the year I met the Beast was the last time Hubby went to this conference. I’ve asked him to not be so generous this time and leave the Beast in Las Vegas this time. I’m not in a big hurry to meet up with ovarian cancer again. Honey, if you read this while you’re there. I don’t need anything. REALLY! I’m good. No guilt. I’d much rather have more mulch for the landscaping. Honest!

I think not having the safety net of my hubby has thrown me. Granted The Ultimate Bengal Fan is now 12 and the B-man is 9. They do a great job of reminding me to do things. Actually, I think they enjoy it. They only remind me of the fun things. The Fan needed a haircut, but didn’t really want to waste his time getting one. He didn’t remind me. He did finally get one, when I was driving past Great Clips and saw their $5.99 special. It actually worked out better than I thought since it saved me $9.00. B never reminds me to make vegetables for dinner. Let’s not even talk about bedtime. They do remind me about promises to go out to lunch and pizza night. I guess it’s about priorities – theirs not mine.

Just when I was feeling like I was going to be smothered in peanut butter, I read a study that had been published in Great Britain. Apparently chemo brain is real (GASP – Really?). Chemo affects the brain’s ability to focus for more than just a brief period of time. You can no longer order your thoughts (as in putting them in order, not telling them what to do. Apparently I can no longer to either) and your mind drifts even when you think you’re on task. How crazy is that? I’m surprised I can type coherent sentences after reading that.

While the study does confirm what I knew to be true, it does seem to provide me with a sense of relief. I’m actually not crazy. I have a legitimate reason to forget things. I can play the cancer card without feeling like I’m duping people. While I hate to play the card, sometimes a girl’s gotta’ do what a girl’s gotta’ do. I rarely play it though. I tend to forget where I put it.

In the future, I will be using the GPS on that phone. I have a new purse with a special pocket just for it. Hopefully, it can find the closest Dunkin’ Donuts. Until then, hand me a spoon. I need to get through this fog.

Dual Reality

For those of you who have been patiently waiting, the news is in. I have officially passed the 2 year mark in remission. This is HUGE when you’re a survivor. It means I only have to put my feet in the stirrups once every 6 months, instead of once every 3 (I apologize to my male readers for the mental image). I will still get my tumor marker drawn every 3 months since I have to get my port flushed anyway, but it’s still another step in the right direction. The next milestone is at 5 years, so I’ve got a while for that one.

Now, you’d think I’d focus on just carrying on with life and I am. Came home from the doctor, ate some lunch, did some schoolwork with the boys, thawed out some meat, did the laundry, etc. Just another day in the life of a homeschooling mom who freelances from home. Yet my brain is somewhere else. It’s focused on how to maintain what I have in spite of what may be.

So as I’m getting dressed this morning, I realized I had mixed emotions about being a 2 year survivor. If you’d asked me 2 years ago, how I’d feel today, I’d of said, “Ecstatic! Overjoyed! Relieved! Amazing!” And I do feel all those things, but with a twinge of sadness. Please understand that I am so very thankful that God has blessed me with healing to this point. I am able to do most of the things I love. But I grieve so much as well. Two years later and my neuropathy continues to be a royal pain (pun intended). I finally gave in last month and started PT so I could get my hips and back into some type of alignment so I could walk again (talk about pain!). When your gait is a cross between a penguin and a duck, you need some work. Despite the progress I’ve made, I wonder if I’ll EVER be able to walk without pain. I forget things I shouldn’t forget – like my sons’ names.

You’d think a mom could remember her kids names. A couple of weeks ago, I called the Ultimate Bengal Fan “Sierra.” Sierra is our 14-year old cranky, snow white cat who is part Angora with the hair that goes with it. He looked at me and said, “Seriously Mom, do I look like the cat to you?” “No, but you do need a haircut,” was my reply. Still couldn’t remember the kid’s name. I remember it now, but I could tell that through the joke there was pain. “My mom can’t remember my name.” Chemo fog, you’re one cruel master.

On the good days, I barely notice the neuropathy and chemo fog barely raises a blip on my radar. I go through life doing what I do. On the bad days, I need an iPhone so Suri can remind me of all those things that I would otherwise forget. With my luck, I’d probably forget where I put the phone.

I realize that I live two different lives on many days. There’s the one I show the world and there’s the one I live. The one I show the world is the one who is a doting wife and mom, writes articles, schools her kids, attempts to clean the house, and loves to cook. The life I really live is one that wonders who will do this if I’m not here. The life I really live is the one that has the Beast lurking in the shadows. While the Beast is safely off my property for the time being, I know he’s an opportunist and if I give an inch, he’ll take more than a mile. Meanwhile, he’s got his friends Chemo Fog and Neuropathy to remind me that he’s only a cell mutation away.

It’s tough to live in two places at once, but I’m too scared to go all in where I should be and too smart to go all in where I shouldn’t. So I stay where I’m at, trying to balance in both worlds while keeping more of myself in the present and less in the “but what happens if…” place. Actually, I like where I’m at. It keeps me from getting complacent without being a hypochondriac. Maybe a little “what if” every now and then is okay.

As always, God’s got this. And let’s face it, we all have a dual reality where God’s concerned from time to time. There are times when we’re in sync with Him and times we’re not. That’s okay too. The disciples weren’t always in sync with Jesus, but He loved them anyway. I know God loves me just the way I am – a foot in two realities. And I’m okay with both of them.