Farewell Carboplatin, Thanks for the Dead Cancer Cells and Painful Hands and Feet

Since this is my last cycle with my first-line chemo triplet (carboplatin/alimta/avastin), I thought I would give a little more detail about the experience. Check me out, I'm getting nostalgic.

Day 0 (day before infusion): I start the pre-med steroids, and the effects kick in by evening. I feel amped up and my joints start arching, particularly my hips. Plus I get this weird insatiable hunger, with pronounced cravings for meat. I am unable to fall asleep until after 4 am.

Day 1 (infusion): I start with a blood draw to check that my blood work is good enough for the next onslaught of drugs. This goes off without a hitch, in and out with little delay.

Next stop is the oncology department. My oncologist is out of town, so I have a quick check in with the nurse. My blood counts look good so we go ahead with the treatment as planned, and schedule my next CT scan for November 8. I am leaving oncology at 9:15 am and head over to the Infusion Center for my 10 am appointment.

At 12:45 pm (after over 3 hours in the waiting room), they call me in for my infusion. The room is a large U shape with recliners and IV pumps set up around the perimeter, and a nurses' station in the center. I settle into my comfy recliner and ask for warm blankets to wrap up my arms. This helps to make the veins pop out more and hopefully make the IV access easier. Jason pulls up a not-as-comfy chair and goes to get us something to eat from the snack room. The steroid hunger is kicking in big time.

It takes two nurses and three needle sticks, but they finally get an IV going. No shots today, so that is the last poke for me. They start the anti-nausea pre-meds, and by 1:30 they finally get the chemo started. Jason and I get out the iPad and headphones and start watching "Orange is the New Black."

There is some drama when we hear a nurse from the other side of the room call out, "Guys!" Her voice has that blend of urgency and forced calm that speaks volumes. All the nurses run over and we hear an assortment of rapid-fire orders about Benadryl, call a code, history of asthma, allergic reaction. A tense quiet falls over us as all the patients freeze, hoping for the best and knowing that this could be any of us. Several minutes later the situation appears to be under control and everyone goes back to their business.

My final drug infusion wraps up around 3 pm and we head out. I feel okay, just very worn out. And STARVING. I stop at Panera and pick up a sandwich that I take home and proceed to devour. I spend the rest of the evening going back and forth between my bed and couch, plus enjoying a lovely Korean dinner thoughtfully brought over by a friend.

Day 2: I feel generally run down, but not terrible. Tired, vaguely yucky. Thankfully, Aloxi (the anti-nausea drug) works really well for me. I have a couple of nice bruises on my arm from the IV attempts, and some soreness at the infusion site. The tingling and sensitivity is starting in my hands and feet, a neurotoxic side effect of carboplatin. I spend most of the day on the couch or in bed, "lounging out" as Zander would say. There are also the other GI side effects, but in the effort of avoiding TMI, I will just say that Miralax is great, as are those flushable wipes made for potty-training toddlers. And Activia is really helpful. Who knew?

Day 3: Still tired and run down, increasing tingling and sensitivity in my hands and feet. It becomes uncomfortable to open jars and use hot water. The funny mouth taste is starting, a bizarre and rather gross side effect. It tastes like I have some strange after taste from something sour or slightly off. The only things that seem to help are sucking on hard candies or nibbling on snacks. More lounging out.

 

"Resting" on the couch with my girls

Day 4: My mouth tastes gross. Just gross, gross, gross. It makes me want to sip on something all day - which is a good thing overall, I just wish I could get rid of this weird taste. Salty snacks seem to help. The tingling in my hands and feet is pretty constant today. I feel worn out still, but managed to have a short outing for a hair cut. I have a chronic runny nose and itchy eyes, a side effect from the Alimta. Not terrible, it just feels like I have allergies all the time and I go through a LOT of kleenex.

Day 5: I keep thinking I have more energy, but little things tire me out very fast. I feel sort of foggy-minded, I guess it is a mix of the fatigue and "chemobrain," or the impact of having lots of harsh chemicals coursing through my system. I find that it manifests in that I have a harder time multitasking. If the kids are talking to me and the TV is on and the water is running for the dishes, I have a really hard time following all of the sounds. I have to turn off the faucet and look right at the person talking in order to really follow what they are saying. A very strange feeling when I am used to doing a million things at once. I do manage to do some studying and take the online quiz for my Statistics class (I aced the exam! Woo-hoo!). I just need to focus a lot harder than I am used to.

Day 6: Things are improving. The sensitivity in my hands and feet is decreasing, making washing dishes way less painful. I managed to do a bit of vacuuming, did a quick grocery shop, and carved pumpkins with the kids. Still tired, but things are looking up.

Day 7: I am a marathon sleeper (really, if there were a contest I could totally win), but I am starting to feel more like myself. My feet are still a little sensitive, but cozy slippers and socks make them much more comfortable. Time to get back on my exercise routine!

So, there you have it, a glimpse at chemo week. I am very thankful that I am one of the luck ones who is still able to function somewhat normally while on chemo. Now comes the "nadir week," where I feel more and more okay, but my immune system takes a nose dive. Lots of hand washing and Purell!

Making Small Talk When Your Life is Upside-Down

It is day 4 after chemo (cycle 6), so I am pretty wiped out. My exciting outing for the day was a quick haircut at Great Clips, since we are going to have some family photos taken on Tuesday and I thought I should try to look decent. We have been meaning to get photos done since the girls were born (yes, over 2-1/2 years ago) and we are finally doing it.

I hadn't realized how complicated small talk with strangers can become when tackling a major health issue. My friendly stylist chatted away, as they always do, asking me what I was up to today.

WHAT I THOUGHT: Sleeping, recovering from chemo, trying to eat a lot of calories and keep my fluid intake up.

WHAT I SAID: Oh, I have had a pretty relaxed day. Just taking it easy.

Somehow the conversation came around to what I do, which is a weird topic of conversation for me now, because I am still in grad school, but only taking 1 class, and I am only working very part time. She asked what I was studying, I replied Theater for the Young, and of course she asked what sort of work I would do with that.

WHAT I THOUGHT: I used to know. I wanted to be a professor. I was going to develop arts integration curriculum, and write and direct shows for young people. But who knows now what I am going to do. My priorities have all shifted. The most important thing now is spending time with my family. 

WHAT I SAID: Oh, teaching, working with kids in the arts. Freelance stuff.

As we discussed my haircut, she mentioned that I was last there in March for a trim of my shoulder-length hair (I didn't realize they kept track of that stuff). I explained that I chopped my hair short this summer, and she asked what prompted the drastic move.

WHAT I THOUGHT & WHAT I SAID: Well, actually, I'm on chemo. I cut my hair short because I was expecting it to fall out. It has thinned a lot, but I still have a lot left.

I felt bad, this seemed like a lot to dump on my friendly stylist who just wanted to have a pleasant chat. But she took it in stride and we wrapped up the haircut.

It made me realize how differently I view things now. Life changes when you no longer assume you have an endless string of tomorrows. It's not that I mind talking about all this cancer stuff, it just seems to shake people up a lot and then I feel bad that I have upset them. No one likes my answer when I say the prognosis isn't good. I remain perpetually optimistic, but my situation has radically impacted my thinking. Sometimes I feel like I am in some alternate reality, where future plans are forever unstable and all that really matters is this present time.

And then, I think, this may be how life really works.

Health Kick, or Is It Possible to Get Healthier on Chemo?

On Tuesday I am due to have cycle #6 of this chemo cocktail (carboplatin, avastin, alimta), the second of my "bonus rounds." For some reason, cycle #5 has been incredibly kind to me. Sure, I had lots of the annoying side effects, (a weird taste in my mouth, tingling hands and feet that become incredibly sensitive, plus I got a stye in my eye) but those left after about a week. The fatigue is always rough, but this past week I have felt my energy returning to levels much higher than before I started chemo. The main thing is that I can breathe so much more clearly. 

After I was diagnosed, I remember looking around our backyard, and I noticed that I had placed a lawn chair next to every one of the kids' play areas. I was so short of breath that I could not stand for any length of time to play with them. I didn't go up to Zander's room because I would be so very winded by the time I reached the top of the stairs. In those days, having a shower and walking back to our room was enough to require at least half an hour of bed rest to recover. 

Somewhere over the past few months, that has all started to change. I can now walk around carrying my daughters (one at a time, mind you!). I discovered this quite by accident when Mikaela was fussing and I picked her up purely on instinct and started walking. After a minute or two, I realized that I wasn't puffing for air. That was a wonderful moment. 

My new found ability to breathe has put me on something of a health kick. About 2 weeks ago, we bought this lovely new toy.

Mikaela working out

I decided that, since my lungs actually seem to be working again, I have an obligation to keep them as healthy as possible. I appreciate the ability to breathe so much more than I ever have before.

At first, I struggled to do more than a few minutes on the bike. However, after 2 weeks of dedicated practice, I can go 20 minutes nonstop. It's not so impressive - I have to keep it on the lowest setting, but remembering that it was only a few months ago that I could not climb a flight of stairs, I feel pretty excited.

I have also been drinking protein shakes to help keep me at a 2000+ calorie a day diet. Weight loss is a major problem for cancer patients, both because the cancer steals nutrients, and from chemo related nausea. Thankfully, the anti-nausea meds have been very effective for me, so I have been working to pack on the pounds. I am pleased to say that I have gained back all of the weight I lost, and then some!

Hopefully, Cycle #6 will be relatively tolerable, and I will be able to continue (slowly) improving my fitness level. It's not much, but it makes me feel good to be able to do something to keep myself in good condition. I hope to be in this fight for a very long time. 

Cancerversary

23 years ago today, at age 14, I was diagnosed with osteogenic sarcoma of the right humerus.

It is strange that now I have to refer to that as "the first time I had cancer."

I recall driving to the biopsy early that October morning, when the first fingers of Minnesota winter were really starting to grip the state, covering everything with frost and making the air harsh and brisk. I looked out the window and thought to myself, quite dramatically, "thus begins the winter of my life."

The doctors very strongly suspected that the biopsy would come back positive for cancer, and told me they would be able to tell by looking at the specimen for just a moment under a microscope, so the plan was to keep me under anesthetic and put in my port once they confirmed it was positive. I remember waking up after surgery and feeling for my new port. It was there, so I knew my answer. "Here we go." I fell back into my groggy slumber.

What followed were 11 of the hardest months of my life. I seemed to get every rare complication from the chemo drugs, so much so that at the end of my treatment, one of my oncologists remarked, "When I told you all of the possible side effects, that wasn't meant to be a challenge!" My chemo was all inpatient, with five days in a row of infusion. After every cycle, without fail, my counts would drop dramatically and I would come down with an infection which would keep my in the hospital until it was time for the next chemo cycle. I was so violently ill from the chemo that I was fed via IV for months, and still lost 30 pounds. I spent virtually a whole year in the hospital, a building that was less than two blocks from my home.

I remember arguing passionately on Christmas eve day, begging them to let me go home so that I could wake up in my own bed on Christmas morning. First, they said, I had to prove I could eat and drink. I set to that task with great resolve, and later that afternoon proudly told them that I had kept down half a glass of water and one and a half saltines. At that time, it was a huge accomplishment, and somehow they agreed to let me go home. I spent a lovely 24 hours with my family, opening presents, and having a fairly normal Christmas before checking back into the hospital that night.

Not surprisingly, my second dance with cancer has led me to reflect on that time a lot, and I keep wondering if there are others like me out there who won the battle the first time, then got reenlisted into a whole new fight. At my follow up appointments when I had finished treatment, I used to ask about the other young cancer patients I knew, until one day I was told that two of them had their cancer recur, and one had passed away. I stopped asking after that.

I have only kept in Christmas-card-contact with one of my old cancer buddies, and while I would love to talk to her, I think it would be kind of cruel to call her up and say, "Hey, remember when we went through hell together, then got cured and went on with our lives? Well, it can come back in a whole new form!"

In some ways, I am thankful that I have my first experience to think back on, because I know just how much I can handle (a lot). So far, at least, this hasn't been nearly as terrible as that was. Side effect management has improved by leaps and bounds, and I am currently on a fairly tolerable chemo triplet. I know that things will get a lot harder. But I am also older now and have a lot more life experience. Most importantly, thought, I have three little ones who keep me very grounded in the real world of day-to-day life. They are three small people for whom I would do anything.

Reality Check

I learned today that a young woman just lost her 29 year old husband to stage 4 lung cancer. Three short months from diagnosis to death, he leaves her with two small children and another on the way.

I am speechless.

It is a brutal reminder of just how cruel this disease can be.

And it reminds me to count my blessings. This round of chemo has been remarkably kind to me. I feel quite well right now. I can breathe so much more easily than I could before starting chemo, and I have virtually no pain from where the bone mets are (were?). Today, I was well enough to take a long walk around the neighborhood with my husband and dream about our future endeavors. It was the sort of day where I could almost forget about cancer.

Fear

As I am awaiting the results from my CT scan, I have been trying to think of ways to deal with this fear of the unknown.

I have tried to logic my way out of it, by telling myself that nothing is significantly different before they tell me the results versus after, the only difference is my knowing.
That kind of helps.

I have tried to comfort myself with numbers which, incidentally, is how I had such a wonderful drug-free birth with Zander (keep the mind busy so it cannot address the pain!). Currently, I am trying to quantify my fear of various outcome. If there are between 1 and 2 new mets, then I will feel somewhat fearful. If there are 3 to 5 new mets, then I will feel moderately terrified. If there are greater than 6 new mets, then I will feel very scared.
This has been somewhat helpful.

I would be nice to use a lovely bottle of wine to address the fear, but I am trying to protect my liver so that option is out. I heard from a fellow lung cancer survivor that she pops a Valium to get through the horrible waiting. Doesn't sound like such a bad idea to me!

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While I was in the waiting room for the CT scan, drinking the oral contrast solution, I got into a conversation with two ladies who were also consuming this lovely beverage. In a very thoughtful attempt to make the drink palatable, the nurses mix it with a flavoring syrup. Our site offered banana, vanilla, berry, and mocha. I opted for the berry, which my cohort agreed tastes fine at first, but by the second cup (yes, we have to drink two large cups) is much too sweet. One lady asked the nurse if she could prepare a flight of contrasts so we could sample each. I don't think the nurse found this quite as funny as we did.

Instead, we pooled our knowledge and decided that banana is disgusting, berry is okay, vanilla is rather bland, and mocha is pretty decent, though a bit strong. One woman then came up with the idea to mix mocha and vanilla, which she tried for her second drink and said, "Actually, this is really good!" I know what I am getting next time.

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I guess my sleepless night was for nothing - the results of my scan were good, showing more shrinkage of my main tumor, and stability or shrinkage of the others. 

Now, off to chemo!

Thanks, as always, for all the love and support.