Camping With Chemo

I just took my last dose of chemo for this round – supposedly my last round.

Though I had planned on starting after we got back from our camping trip – my low platelet delay gave me some flexibility in when I started my ‘last’ round. Call me crazy, but I decided to get it over with, even though we were going camping. It went so well the last time I had the new lower dose, I figured why not? So, I experienced days 2, 3, and 4 at the beach and until today (day 4), it went remarkably well.

So, I thought I’d share some pointers on how to get through Camping with Chemo.

1. Prepare and freeze all of your meals before you leave home. It makes meals SUPER easy and they double as ice in your cooler.

2. Bring plenty of fresh fruits, veggies, and comforting protein snacks.

3. STAY HYDRATED!!! And then drink another bottle of water. And then another.

4. Do NOT expect to climb any mountains – or even large hills or driveways, you will be disappointed. My brother, who’s not on chemo, DID climb a mountain this weekend – Mt. Williamson, a Fourteener – and he was NOT disappointed.

5. Bring your pillow and don’t be shy about bringing a nice comfy air mattress. Good sleep is IMPORTANT if you plan to camp with chemo.

I had a great time and until we were all packed and ready to drive home, my energy level was good. I think some sleep deprivation (no air mattress) and not enough breakfast before the hard work of packing up camp triggered a headache and exhaustion.

Some non-chemo related advice for good camping fun…

1. If your eldest child has grown 7 inches in the last year or so – i.e. since the last time you camped – make sure she still fits in her junior sized sleeping bag. Ours did not and some serious negotiating commenced to get her brother to switch bags with her…he was convinced he should be paid to make the switch. He was NOT paid and despite his predictions to the contrary, he survived sleeping in a red sleeping bag.

2. If your eldest child says that we might want to get our smallish, short haired dog a sweater because we know it’s going to be cold…believe her. I can’t say I’m a fan of pet clothing and while our dog will willingly be dressed in a tie, I didn’t buy him a sweater. He needed one.

3. Leave all of your electronic devices at home. We had 5 kids who climbed trees, rode scooters, played games, and enjoyed each other’s company.

4. When you camp at the beach in Northern California, you can go from very cold and foggy to hot and sunny in just a few miles – be prepared with layers.  Also, even if you’re camping NEAR the beach, you’ll get sand everywhere. Be zen about it.

5. The Hula part of our new Kelty Hula House tent CAN be used as a hula hoop.

Kelty Hula House

Kelty Hula House

Happy Camping – with or without chemo.

My Stupid Platelets

Well, my bone marrow hates me. It’s official.

I had my pre-chemo appointment today – saw the vampires, peed in a cup, met with my oncologist.

My platelets are at 98…2 frickin’ ‘whatevers’ off the target 100. A week ago they were 104. Under 100 means no chemo.

Now I have to test again next week.

But we’ve decided that after the next round – #6 – I’ll be done with Temodar since my body doesn’t seem to care for it. 6 months is pretty standard, apparently. The bulk of the benefit was in the initial 6 weeks of treatment, we’re told. Some people continue Temodar for 12 months, some longer, but there’s debate about how much benefit it really offers.

I have mixed feelings about this decision. On the one hand, I’ll have what will hopefully be an enormous break from filling my body with toxins. On the other hand, it’s one less thing I’m doing to keep the beast at bay. I will continue the vaccine trial, so it’s not like I’m doing nothing…but still.

And the roller coaster of emotions continues.

OMG! IT’S SO ITCHY!!

No, I haven’t contracted something scandalous. I got my vaccine shots today (or at least my shots of what we hope is the vaccine – still a double-blind study).

The nurse argued with me about the needles…again. But she was wise enough to give my arm a little spa treatment with a warm, damp towel first to coerce my veins into submission.

It was quiet and uneventful.

Funny how spending 2 hours in a hospital bed and getting four (sometimes painful) intradermal shots in my thigh that produce intense itching for roughly 4 days can make me feel better simply because it means I’m (potentially) doing something to keep the beast locked away.

Today things got itchy almost immediately, which allowed me to experience the glove icepack – a fun little creation that tests a nurse’s (or in this case, research coordinator’s) fine motor skills.  Which is more creepy, the Hulk or the Icy Hand?

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Living Through Chemistry

I know the phrase is ‘better living through chemistry.’ In my case, it’s just ‘living through chemistry’ since my chemistry-in-pill-form just may be the thing that’s keeping me alive…and driving…and not throwing up…and not freaking out daily with anxiety and depression. I’ve never been a huge fan of taking pills, but this week I would LOVE to add a decongestant and an allergy pill to the mix…alas, I can not. Sigh. Sniff…Aachoo!!!

Day 2 of chemo: Tired, but managing the nausea so far.

Alarms, texts, emails, a poke in the ribs from my eldest child – sometimes it takes all 4 for me to remember to take my pills. It’s not that I don’t WANT to take them, it’s simply that I still haven’t quite learned that if I don’t stop what I’m doing IMMEDIATELY and take them, I will forget. Seriously. It’s crazy.

This is a small portion of what some people take, but behold my chemistry for a 24 hour period – minus 1 or 2 more oblong yellow ones if needed (my supplements are included here, for the record, since I have to take extra B12 and zinc):

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Post chemo cycle, the number of pills drops by 5 or so. I just feel grateful that there are no pain pills in this collection and that the ones here seem to be doing their job with few side effects.

A brief and not very informative history lesson: The phrase ‘Better Living Through Chemistry’ is derived from the DuPont advertising slogan  “Better Things for Better Living…Through Chemistry.” This was their slogan from 1935 through 1982, when they dropped the ‘Through Chemistry’ part. It’s also the name of the first album from Fat Boy Slim, a 2013 movie about a pharmacist, and a song by Queen’s of the Stone Age.

All That Waiting For Nothing

Today was my pre-chemo appointment with my neuro-oncologist (NO). These appointments start with a trip to the lab to see the vampires and pee in a cup. With luck, we know my platelet count before or during my visit with my NO.

1. Being early and hydrated makes the lab visit go WAY faster.

2. No bears were sighted on Alaskan cruise. Mrs. Dr. Recht is sad.

3. My platelets are stubbornly hovering just UNDER 100 (95 specifically), which means I can’t start my chemo today.

4. We’re reducing my dosage. Yes, you guessed it – the pills I waited around for all yesterday morning are now worthless to me. Temodar comes in specific dosed sizes…none of which translate to my new dosage.  I’ll have to wait around for another delivery now.

5. I have my blood work done again next week to see if my platelets are cooperating. If they are, I’ll start after a quick weekend trip with my daughter to AZ to see some of our favorite people.

Planning beyond that is once again thwarted.

Waiting For My Toxins

Assuming my platelets are cooperating, I’ll start my next round of chemo tomorrow.

I, being forgetful (or a master procrastinator), waited until the last minute to order my refills. My particular brand of toxins have to come from a specialty pharmacy, they deliver them right to my door. They scheduled delivery for this morning. That’s how specific they get with the delivery window – ‘Tuesday morning.’  Of course, receiving my toxins requires an adult signature. So, I quickly ran my kids to camp and left a note on the door saying I’d be right back. An hour and a half later, they’re still not here. Did I miss them? They don’t leave a note like UPS. What’s their definition of morning? Will they be here before I have to go pick up my child who doesn’t want to ride the bus 45 minutes away to sit on the side of the pool in the wind and rain? What if I get in the shower and THEN they come? What if I’ve missed them? When will they come back? What if they have to come back tomorrow morning? I’ll be at Stanford visiting the vampires, peeing in a cup, and chatting with my Neuro-oncologist about my platelets and his cruise to Alaska. What will I do if I don’t get my toxins in time?!  (Run around the room in a panic waving my arms in the air)

I understand I’ve brought this on myself because I didn’t order them sooner. I don’t like generic delivery windows. I’m impatient, I don’t like waiting around…even if I was going to be home anyway.

I guess I’ll just go ahead and do some laundry.

Today: 6/6/2013

Today is the second to last day of school. My baby graduates from Kindergarten tomorrow. My other baby will be a 5th grader.

Today everyone is feeling good – no sign of tummy bugs and chemo has ‘left the building’.

Today, my eldest pulled out her own tooth – don’t worry, it was ready to come out. Hoping that her retainer will now fit again…

Today I start a new book – I’ve just finished ‘Don’t Let’s Go To The Dogs Tonight’ – and I’m looking forward to exploring all of my options and talking about them with friends.

Today I need to get some laundry done…and maybe pick up the house a bit.

Today I have officially resigned from my job after nearly 15 years at the company. No regrets.

Today I drive to Stanford to get my monthly vaccine shots. Right leg today. The Hulk(s) are frozen and ready.

Today I’ll try not to worry too much about what my MRI next Friday might show.

Today, we’ll eat a frozen treat after school, practice our breakdancing moves, and enjoy the warm weather.

Itchy and Scratchy

I mentioned a couple of times that I have psoriasis. For those of you who don’t know – psoriasis is an autoimmune disease of the skin. Mine is of the plaque variety, but there are many different forms – some very painful and debilitating. Psoriatic Arthritis is a fairly common development for Psoriasis sufferers and there is an increased risk of other health issues. If you’re interested in more details, you can find more information here.

Mine is mostly on my scalp, but pops up on occasion in other spots. It would be considered a minor case considering that some folks with psoriasis have it on 90% of their bodies and end up in the hospital to control the pain and other symptoms. For me, given what other people suffer with this disease, it’s mostly an annoyance. It’s like having the worst case of dandruff you could ever imagine. Sometimes the spots on the other parts of my body hurt – especially if I have a breakout on my face – which doesn’t happen often.

I’ve tried a lot of medicines – mostly topical creams/ointments containing steroids. Some helped, some didn’t. But eventually, it came back and very often worse than when I started any given treatment. I decided – as my psoriasis flared at one point – that I needed to do something to treat the potential root causes. One of the (now ironic) risks of scalp psoriasis is hair loss and I really didn’t want to lose my hair (ha!).  I stumbled upon Dr. John Pagano’s Healing Psoriasis: The Natural Alternative and a couple of other books that seemed to point to similar triggers and approaches.

So, I changed my diet. I stopped eating nightshades – peppers, tomatoes, eggplant and some other foods thought to be triggers, like strawberries. I already avoided sugar, but I cut way back on my drinking (like, 3 glasses a week to 1). I also tried to switch to all natural products – minimizing my exposure to chemicals – shampoo, soap, makeup, deodorant, etc. I started taking supplements that Dr. Pagano recommended – drinking Saffron tea, taking slippery elm and lecithin capsules. I did a 2 week cleanse. Not only did my psoriasis nearly disappear, but I lost about 15 pounds. It was pretty remarkable. For the first time in my adult life, I didn’t leave a trail of flakes behind me as I left a room.

But, psoriasis is a fickle beast. Eventually it stopped working as most things that help seem to do. Shampoo, cream, or medication rotation is a common trend among sufferers.

I had also heard that chemotherapy would reduce or eliminate psoriasis. Some folks who don’t have cancer actually begin a chemotherapy regimen to control their severe psoriasis. They are so desperate for relief, they willingly take chemotherapy drugs. I figured that – aside from battling the beast in my brain – it was maybe one of the only benefits. I think it probably did help during that 6 weeks of non-spa treatment. But maybe I just didn’t care as much. It’s come back since then. As it always does.

After watching William Li’s TED talk on anti-angiogenesis, I thought that in my efforts to control my annoying minor case of psoriasis, had I inadvertently fed sleeping cancer cells in my brain – triggering rapid tumor growth? There are some who dispute William Li’s claims of anti-angiogenesis effects on cancer, but every theory/approach/treatment has doubters. If we knew what ‘worked’ to prevent/treat/cure cancer there would be a news story or two about it. We’d need less money for cancer research, not more. Each cancer is different, each body is different – it’s all a mystery and there’s never likely going to be that ONE thing that works. As much as we all might hope.

So, I eat tomatoes, strawberries, peppers and the other things I tried to eliminate to reduce my risk of losing my hair (ha!). My psoriasis is back – sometimes it’s worse than others. But IF anti-angiogenesis has any chance of helping control my brain tumor (or other potential tumors) – I’ll eat those foods that have shown to have an effect. If chemotherapy continues to keep my beast locked away, with or without a potential benefit of helping my psoriasis, bring it on. I’ll take an itchy head and a few days of nausea over a terminal brain tumor any day of the week.

Let Me Off This Ride!

I’m finally feeling reasonably human again after this round of chemo. Maybe it was just that I was feeling so good and the shock of it was greater. Maybe the month off cleared so much of the previously ingested toxins out of my system that it really just hit me harder.

I took my first dose on Tuesday, by Friday night I was constantly nauseous – in spite of my efforts to stay ahead of it with my anti-nausea medicine. I couldn’t eat more than saltines – even my ‘go to’ toast with PB was disgusting. I couldn’t open the fridge without gagging. I already have super smell (NOT a super power it turns out), but this goes way beyond my normal sensitivity. I was exhausted, my mind was foggy. Every time I tried to do something – say shower – I needed to lay down after. I spent Friday night, Saturday, Sunday, and most of Monday in bed aside from brief forays outside or to the kitchen to refill my water bottle.

My husband became a single father and did an amazing job. The kids were anxious and worried – though they didn’t say it outright – and it showed in their behavior. He handled it beautifully – keeping them busy, teaching them lessons of why you shouldn’t beat on your sibling, giving them space to feel whatever they were feeling. All while keeping his cool and taking care of me – mostly just letting me sleep/wallow in my nausea.

It wasn’t fun. I don’t really want to do it again. I will if it means keeping the beast locked behind a door, but I don’t want to.

I wonder what the REAL definition is when the doctor says you ‘tolerate’ Temodar well. Does he mean it creates the ‘normal’ level of hell or does he mean it doesn’t kill you? I’ll have to ask him when we see him again on the 15th in preparation for the next steps.

Until then, I’m going to eat a lot to try to regain the weight I’ve lost (never thought I’d say that), enjoy the beautiful weather, hug my kids a lot, kiss my husband, and relish some glorious between days.

Toxic Chemicals

The weird thing about a grade 4 Glioblastoma Multiforme is that even when there’s no immediate evidence of a tumor in your brain, you still have to continue fighting it as though it’s there, hiding and ready to pounce out from behind the curtain at any moment. Actually, even with lower grade primary brain tumors, you have to treat it so it doesn’t BECOME a grade 4 GBM. Which means that I intentionally ingest toxins each month in an effort to keep the lurking beast behind the curtain – or better, behind a locked door that can never be unlocked again.

Because my platelets started off low, the chemo (Temodar) will drop them below an acceptable level pretty quickly. Which is why I ended up skipping a month of treatment. During that month off, I felt pretty awesome. I had energy and was able to exercise regularly (meaning I walked) without trouble. My thoughts seemed more focused and clear. My long-term memory seems to be in pretty good shape – can’t say the same for my short-term memory, but that’s ok. I went on vacation and relaxed. I was able to chaperone a field trip with my son’s class. Generally, I was feeling more like myself – the self that I remember – than I have in a long time.

I started this month’s chemo on Tuesday night. That puts me at day 4 (I just had to count that on my fingers). I felt so good last month that I forgot what it was like to feel foggy – to have to count 4 days on my fingers. I forgot what it was like to feel nauseous constantly – to have even the thought of food make me cringe, but know that if I don’t eat, I’ll continue to feel nauseous. I forgot that simply climbing the stairs would sap me of energy. I forgot what a burden it is on my husband to have to help with the kids in the morning and then come home to make dinner.

I thought I’d prepared better this time. I knew I needed to stay on top of my anti-nausea drugs. I knew I needed to have easy food on hand – for me, sourdough toast and peanut butter and vitamin water zero become staples. I knew that if I was feeling good at any point, THAT was when I needed to prep dinner or get a load of laundry done or just eat – whatever didn’t make me gag at the thought. I knew that I might not get a lot done – I might need to just sit and read or watch a movie or take a nap – and I had to be ok with that, allow myself to get nothing done. And yet, I sit here feeling slightly shocked at the nausea and feeling guilty for all that I feel and all that I have not done.

He conquers who endures.  ~Persius

Let perseverance be your engine and hope your fuel. ~H. Jackson Brown, Jr.