It’s A Platelet Miracle…OK, Not Really

I drove to Stanford today to visit the vampires. It took me 5 times longer to drive there than to have my blood drawn. I got stuck behind a newbie to the Cancer Center and had to patiently wait while he figured out how the valet parking worked – stopping to ask the attendants along the way from one side of the driveway to the other. I took a deep breath and tried to understand the anxiety and confusion he must be feeling.  No one wants to visit the Cancer Center, let alone deal with weird parking practices while the new hospital is under construction. I’ve been at it a lot longer and have had time to sort it all out, expecting the chaos and backup and friendly attendants patiently directing confused drivers every day, all day long.  But I digress from my minor ‘miracle’…

Drum roll, please.

My count is up to 111. Ok, not so miraculous (reminder that the lowest end of ‘normal’ is 150), but it’s over 100. Technically, that means I can start my next, and possibly last, round of chemo this weekend. I’m still waiting for the Dr. to give me the go ahead before it’s set in stone, however.

I’m starting to embrace the idea of not putting toxins into my body each month (or so.) Not having chemo brain might be kind of awesome – I may write more, sew more, cook more…create more in general. I’ll have more energy, less fatigue. I’ll think more clearly and perhaps spend less time retracing my steps trying to remember why I went into one room or another, only to forget I was retracing my steps when I walk into the original room. I’m thinking I’ll have to rewash at least 50% less loads of laundry I’ve forgotten in the washing machine. Maybe I’ll even be able to sit in a restaurant with ambient noise AND music and not get exhausted in 30 minutes!  Maybe I can’t blame the chemo on all of my issues – the tumor, cancer, a craniotomy, months of treatment, and some of my own high levels of distractibility should take some of the blame I suppose. But, I can’t help think that there may be more days of productivity and inspiration ahead.

Today, I saw more stories of survival than loss. The skies were blue and the sun was warm. We got the chance to visit with new friends from the Northeast. The dog met new doggy friends and saw a few squirrels. The kids got along surprisingly well, even with an abundance of energy.  I had a lovely date with my husband last night (I know, not technically today, but let it slide, ok?)

All in all, it was a good day.

 

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.

Just Another 80’s Mixed Tape

I had my pre-chemo appointment today. My platelets are right back down into the 80’s. Apparently my body is sensitive to the Temodar…as if 3 days in bed the last round didn’t tell me that.

The doctor will be giving some thought to what we do next. Reduce my dose or discontinue altogether. Either way, I’ll continue in the vaccine trial.

I have very mixed emotions about discontinuing. On the plus side, I’d probably start to feel pretty awesome – thinking more clearly, having more energy, feeling less sick and more alive. On the down side, I might feel like I wasn’t being as proactive as I could be to keep the beast locked away. Would I spend more time worrying about it coming back, watching everything I say, think, or do for ‘signs’ of tumor recurrence. Would that anxiety be worth the cost of not being sick in bed 3 days a month?

In light of Angelina Jolie’s revelation about her preventative double mastectomy – I have to admit that if there was something I could do to predict my risks and proactively reduce those risks dramatically, I’d do it in a heartbeat. That’s easy for me to say, however, when I’m not actually faced with the decision. But with brain cancer, with a GBM specifically, there is no gene test (yet). There is no preventative surgery. Those of us with brain tumors chase them constantly, in whatever way we have available to us, trying desperately to catch up and get in front of them – to lock them behind a door that can hopefully never be unlocked. Sometimes we win, sometimes we lose. But we continue to fight and we hope.

Would stopping Temodar make me feel like I stopped fighting? Or would it ultimately make me stronger and more capable of fighting?

 

April’s Brain Cancer Week Update

As I mentioned in my last post, there’s a lot going on this week in the the brain cancer part of my life.

Monday was my vaccine appointment. A friend I haven’t seen in a while drove me, so it gave us some good time to catch up since there was an excessive amount of wait time. My appointment was at 10:00, we were excused at 12:30 with rumbly tummies ready for some lunch. I’ll remember to warn the next person that volunteers to drive me to clear most of their day for the privilege of seeing me in my underpants and watching as someone sticks me with needles. I will promise to buy them lunch after, though. If there’s time.

My platelet count was 92. So much for the break doing wonders – BUT I have to admit that I did have a beer or glass of wine each day on vacation. It was vacation after all. I’m eating my dark leafy greens, taking my iron/B12 supplements in hopes that they come up over 100 before Friday. Think good rising-platelet thoughts for me!

The nurse who drew my blood reached a whole new level of bedside manner. She did ask me how to pronounce my name rather than just guess (it’s not odd, just spelled different.) She didn’t argue (much) with me when I said I needed a size 25 needle. She only stuck me once. That’s all the positive things I have to say about her. She’s probably lovely, but was certainly hiding her charming personality that day.

The vaccine site didn’t start itching until Tuesday and it’s too low for me to use my ‘ice pack in the pocket’ trick. My neighbor gave me some Incredible Hulk ice packs that are perfect pocket-sized too! If I only knew more about the Hulk, the bad jokes I could make as I place him gently in my pocket and sigh with relief would be WAY funnier. To me. I’ll have to ask that they do the injections above the ‘pocket line’ next time and study up on the Hulk.

I got five reminder calls yesterday for my MRI appointment on Friday. Not kidding, FIVE calls. All recorded, all identical. I guess they really don’t want me to miss this one. As if I would.

Waiting for a scan is this strange mix of excitement and dread. On the one hand, you dread the possibility of bad news. On the other hand, you eagerly anticipate just knowing what’s going on in your brain. I hesitate to be too optimistic, for fear it will be bad news. But at the same time, my gut is telling me it will be just fine. In the mean time, I’ll stay busy doing post vacation errands and laundry, catching up with friends, and devising new pocketless ice pack holding contraptions.

 

Call Cyndi Lauper: My platelets are stuck in the ’80s

Low platelets…those damn low platelets!

I had my pre-chemo appointment today. My platelets were at 82 (a week ago, they were 100). If they’re under 100, I can’t start my chemo round for the month.

So, I have to have MORE blood drawn each week until they’re back up over 100. We have a vacation to Hawaii planned, so apparently, I’m getting a ‘reprieve’ from the toxic cancer killers this month. Luckily, everyone agrees that doing chemo while on a (planned pre-tumor discovery) vacation in Hawaii is just wrong.

AND my experimenting with things that might raise my platelets has been a complete failure.  SO, maybe there really isn’t a way to increase them. I have been drinking Goji berry juice – some say it works. Not for me. I have been taking and iron and B12 supplement – some say THAT helps. Not for me.  I avoid sugar and alcohol. I am eating my body weight in dark leafy greens, fresh fruits, etc. Nope, that didn’t work for me either – but I’m not going to stop eating them, because that would just be nutso.

Ah, hell. Now where did I put that Emergency clown nose?

This Ain’t No Spa Treatment

The standard post-surgery treatment plan for a GBM 4 does NOT include a sugar scrub, a pedicure, OR a massage. Instead, it involves an intensive 6 weeks of chemotherapy and radiation. I think the only ‘benefit’ of brain cancer is that the tricky blood brain barrier means chemo is taken 7 days a week in pill form rather than intravenously – with a drug that doesn’t cause you to lose your hair, usually.  Radiation is 5 days a week and involves a mask and being attached to a table – and hair loss.  Damn.  There are weekly blood tests – what I call visits to the vampires.  Regular appointments with my Radiation Oncologist, my neuro-oncologist, my neurosurgeon…all attended by nurses, residents, and medical students. At these visits, I’m weighed, examined, questioned, and tested for memory and motor controls.

4 weeks post surgery, I went for a ‘planning’ appointment for this treatment. This involved vampires, a CAT scan, physicists (no kidding), and being fitted for a mask.  The mask is made out of this odd material that becomes pliable when warmed up, but hardens when it cools back down, so it can be used each day.  The material reminded me of those meshy, styrofoam ‘jackets’ they put on Asian pears.  I should mention here that I started this process with a slight case of claustrophobia.  Multiple MRI’s, being fitted for a mask and then being attached at the head to a radiation table 5 days a week for 6 weeks is an extreme form of immersion therapy, but it works.

I found out quickly that while my neurosurgeon had an excellent bedside manner – my radiation oncologist did not.  He is a lovely man and very good at his job, but either I’m not very funny or he lacks a certain sense of humor or an appreciation for bad Star Wars and Hobbit references.  Yes, an ability to laugh at my ridiculous jokes is required for passing my bedside manner test.

Aside from being a very tedious process, I tolerated it all pretty well.  I was tired, nauseous and gradually got more so.  The treatment accumulates – particularly the radiation – resulting in more side effects – fatigue, headaches, hair loss….

1. At the beginning, I napped most days, but usually not much more than a cat nap.  Toward the end, I was napping 3 times a day.  Walking up the stairs was exhausting.

2. The thought of food was gross, the smell of food was gross, seeing food was gross – but I had certain things that tasted good so I could still manage to eat.  Those things changed over the course of treatment.  For instance, I hated a specific kind of ‘cheese’ at the beginning, but craved it starting somewhere in the middle of treatment.  The funny thing about constant nausea is that I found myself thinking about food a lot.

3. The thirst was insane.  I was ALWAYS thirsty and water did nothing to quench it.  I started adding Vitamin Water Zero to my water bottle and it did the trick.  Who knew?  Every one is different, but this is one piece of advice I’d share with anyone going through radiation because unquenchable thirst is very frustrating and I would never have thought that just a little something slightly fruity would make such a big difference.

4. Radiation will likely cause hair loss.  I ended up with what I call a ‘reverse monk’ – imagine a friar with his ring of hair around his head at ear level – THAT is where I went bald.  Sometimes people don’t lose hair until after treatment is over.  I was a ‘3 weeker’.  When you know it’s coming, it’s easier, but it still freaked me out a bit and hats became a wardrobe staple.  There are stories about people not growing hair back or it coming back a different texture or color.  When you only lose PART of your hair, this possibility can create all kinds of anxiety.  Turns out it’s coming back the same color, same texture and I only have one spot where I’m still bald.

5. Radiation can cause swelling in your brain.  Which will give you headaches.  Which requires you go back on the steroids you took post surgery.  These steroids will make you irritable and ravenous.  I ate…a lot.  No seriously, a lot…and constantly.

6.  Chemo will mess with your blood levels – it’s inevitable.  The thing that they watch are your platelets. The platelets are essential for clotting.  The lower your platelets are, the greater the risk of bleeding to death from a paper cut.  OK, so that’s a bit of an exaggeration. I started out with a low(ish) platelet count, so I asked every nurse and doctor I met, ‘what can I do to raise my platelets?’, ‘I’m vegan, so is there something I can eat to reduce my risks?’  EVERY one of them said there was nothing I could do – ‘chemo will lower them, it happens.’ (More on this topic later) Some people live full and active lives with low platelet counts – but if mine went below 60, I was going to have to stop chemo.  That happened in my last week – so not REALLY a big deal in the overall plan, but I felt like I was missing out on the opportunity to hit the cancer full throttle.  What surprised me is how many people congratulated me when I mentioned that I had to stop chemo.  It made me angry that they didn’t ask what it meant, why I had to stop, how I felt about it – but just jumped to an assumption that….well, I’m not sure what the assumption was…but I didn’t like it.

It was an experience.  Not a day-at-the-spa kind of experience.  It could have been worse based on stories I’ve heard or read.  But radiation is something I’d rather not do again, if possible. Chemo, however, I’m stuck with.  But now it’s 5 days each month at double the dose I took daily for those 6 weeks.  Everyone asks, ‘how long will you have to do that?’  Each time, I answer ‘as long as it keeps working, for the rest of my life’ – however long that is.