Mid October – Starting a new cycle

On Friday night, after a 14 day break, I started up my second full cycle of Sutent. I am LOVING this medicine, and I really hope that it is doing its job, and continues to do it for a long time.

Yes, the side effects are harder to deal with than my first med, Votrient, and if every day were like my 4th week of being on Sutent, then it would be more difficult to deal with than my second med, Inlyta. But I get the break, and that makes all the difference in the world – in dealing with both the physical side effects and, more so, the psychological effects.

The last two weeks were awesome. My last dose of the cycle was on a Thursday night, and by Monday, my feet and whole body felt back to normal. I could feel the side effects lessening before then, too. I had energy. I was fully mobile (though out of shape, so not doing any hiking yet). I could eat spicy food – Indian! Mexican! Yum! But most of all, I felt normal. I felt hopeful. I was looking forward to life. And, really, the emotional uptick wasn’t just the last two weeks, but the whole cycle. Compare that to being on Inlyta, where I often had thoughts of “maybe dying would be easier than this.”

So yes, I’m a fan.

That being said, there are side effects. Two doses in, and I am a little more tired. This afternoon, I am noticing a bit of the burning sensation in my hands and my feet. It’s really only at the “Yes, I feel you there, you sneaky little side effect” stage, and no where close to the “Dammit, why do you vex me and keep me from walking???” stage. I’ll get to that latter stage eventually (probably in two and a half weeks or so), but everything is manageable now. And later on, I’ll be able to count down the days until I get to take a break, so even if I’m wincing in pain as I walk, I know it’ll be over soon.

My oncologist and I had a chat earlier in the week. Among the questions he asked was “How is your weight? Have you lost very much?” Big sigh from me. I WISH! Instead, I gained. Thanks body. I appreciate that.

My goal for this cycle is to swim at least once a week, preferably twice a week. I can do that even when I can’t walk, and hopefully, the continuing exercise will make my fitness level jump up enough to be able to hike a bit during the next break. (And by bit, I mean at all.) Hopefully by then, too, the unending heat will have stopped and fall will have finally come to the bay area. That’ll make it even more pleasant.

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Update: 2/5/15

I met with my oncologist today for the results of my scan. The news isn’t great – in most areas there was growth. In some cases, it was only a mm or so, but in a few it was upwards of 10mm (basically doubling in size).

So, as of today, I am off the pazopanib and starting a new drug, Inlyta (axitinib). Keep your fingers crossed.

I’m having a hard time processing this. My doctor comforted me with “There are lots of drugs to try.” But in my mind I’m just picturing a bleak and short future. And there’s the problem – I’m picturing the future and it messes with my cool.

So, please, keep me in your thoughts and send lots of get your groove back vibes. And if you can wish away cancer, too, that’d be excellent.

Orange is the New Black Hairstyle Roulette

Once again, my hair looks crazy.  I did call it when I said I could use my cancer drug to create striped hair.  I’ve got stripes of blonde, stripes of grey, stripes of dark brown, stripes of lighter brown.  I feel the need to look like I’ve actually planned my hair color.

And so I bring you the Orange is the New Black Hairstyle Roulette.  Pick a color, pick a style.  They don’t have to match.

Here we go.

The Morello

The Morello

Morello, our favorite feisty, bus driving stalker, has hair that is close to my natural color.  I know the brown will look good, but it’ll be a bear to keep up – and anyone who knows me knows that upkeep is not my forte.  My hair is currently about the same length as pictured above, so that length wouldn’t take any effort on my part at all.  WIN!  But, really, it’s a little tame.

 

The Red

The Red

I don’t think I’ll ever be quite as bad ass as Red, but I have dreams that I’ll be able to cook again (though hopefully better than her prison fare.)  I’ve never rocked hair quite as Heat Miser red as Red does, but that could be a fun change.  Again, upkeep.  My hair probably won’t spike as well as hers, but it often has a mind of its own, so a medium short cut would be easy.

 

Nicky

The Nicky

I admire Nicky’s sarcastic humor.  I aspire to it, actually.  I have done Nicky’s more orange-red hair color, and I think it works pretty convincingly on me.  I’m not entirely thrilled about long hair, but I know that my husband would love me if I let it grow as long as Nicky’s.  But, again, upkeep on the color, and trying to tame it with the length – ugh!

 

The Yoga Jones

The Yoga Jones

Now, supposedly, peacemaker Yoga Jones and I hail from the same area.  But while she was growing pot, I was just doing the growing up, going to college thing.  Jones’ hair is the closest to the color that is growing now, thanks to the Votrient.  (Premature grey, premature menopause, and on top of that, cancer?  Yay!)  So, this hair color would be the least amount of work on my part.  I enjoy the ease of a short hairstyle, or if I feel like shanking someone, I can let the hair grow out and channel Taslitz, one of the senior inmates.

 

The Miss Rosa

The Miss Rosa

Miss Rosa has been living with cancer in prison.  Cancer sucks.  Dying of cancer sucks.  Dying of cancer in prison?  Well, maybe that won’t be happening.  I’ve always thought it would be interesting to shave my head.  But, no, I’m not going there.  I just think Miss Rosa is the bomb.

 

The Showrunner

The Showrunner

Jenji Kohen is Orange is the New Black’s showrunner.  Apparently, what you see is her way of dealing with grey.  Given the similarity of our hair length, curls, and face shape, I think I could probably pull the style and the color off.

So, what say you?  Give me the color and style combination you think I should go with.

Update

Late Tuesday night I got home from my Live by Living trip to Colorado.  I’ll write more on that later, when I’ve been able to process all my thoughts and feelings about it.  For now, I can just say that it was an amazing, wonderful trip.

Coming home, I feel like I’ve been dropped in this strangely foreign world once more, and have to readjust.  I haven’t had time to sit back and reflect as I’d like.  Instead, my days have been filled with carting the kids to school, volunteering in the middle school library,and running around to various appointments.  (You know, all the normal day to day things for the parent of tweens and teens.)  I’m writing this post quickly so that I can make it to an appointment across the bay in Palo Alto later this morning.

I have written about my troubles breathing, and before I left, things seemed to get pretty bad on that front.  Climbing the steps to our front door would leave me winded, as would chasing the cat across our (not large) back yard.  I didn’t have much respite from breathing issues when I was in Colorado – although the air was lovely and clean, there wasn’t much of it at 11000 feet.   I do notice a slight positive difference now that I’m back down at sea level, though I suspect that won’t last for much longer.

Before I left, I talked to my doctor about the breathing problems, and he brought up the possibility of heart failure caused by pazopanib/votrient, my targeted therapy drug.   One of my appointments yesterday was with the cardiology department at Kaiser, where I had an echocardiogram to check my heart.  I still need to wait a few days for results, but I’m hoping that it won’t be the cause of the problems.

I’m not sure what I’d like the cause of the problems to be – most of the possibilities that come to mind aren’t pretty.  I’m much more worried about how my breathing problems will affect my quality of life than I think I’ve let on.  Strangely, I don’t feel worried about it affecting my life span, just my quality of life.  As I get more information, I’ll continue to update.

Oops

To steal a line from Arrested Development, I’ve made a huge mistake.

I’ve been taking my pill once a day for the past 5 weeks.  See that?  Pill.  Last night I actually read the prescription label which said to take FOUR pills once a day.  Oops. (understatement)

I immediately emailed my oncologist, who wrote back, not sounding too worried, and said that I should keep an eye out for side effects.  (A minimal dose would explain why the side effects are fairly non-existant!)

I am trying to remain in the mindset that I cannot change the past, and therefore shouldn’t spend time or energy worrying about this.  I am now taking the full dose, and am moving ahead with the full treatment.  That’s what I have control over, what I can do.  And, as a friend wrote to me, “I can’t think of one good reason why you could have been distracted and confused.

On the up side – pazopanib can affect healing, so taking a smaller dose probably helped my body heal from the surgery faster.  I now know that I can easily handle a 200 mg dose each day, which is a stretch for some people.

So, just in time for my trip to New Mexico I’m going to once again be looking out for side effects, which include, but aren’t limited to:

  • Headache
  • Nausea
  • Diarrhea
  • Fatigue
  • High Blood Pressure
  • Loss of Appetite

I’ve been lucky to not have to deal with these (aside from a bit of fatigue, which exercise seems to help).  But, I’ve already experienced one other side effect – a change of hair color.  The roots of the hair on my head seem to have lost color, and the hair on my face has become very light, including parts of my eyebrows.  I’ve gone 45 years without much in the way of grey, but it looks like I’m going to be fully grey in a few months if this keeps up.  Maybe I’ll look fantastic, like one of those lovely older models.  We can wish, right?  It’s a very interesting side effect, to say the least.

Wish me luck!