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.

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.