New Mexico!

I am back from an almost perfect trip to New Mexico.  My mother and I shopped for jewelry and art in Santa Fe, soaked in the pools at Ojo Caliente, explored the pueblo in Taos, and enjoyed a variety of delicious meals and sights along the way.

Santa Fe’s sights were almost overwhelming.  But it was a pleasure to chat with native artists at the Portal, and lunch with my friend, Ann, at La Fonda hotel’s La Plazuela was a delight.

Fence Post, Posi

Fence Post near the Posi Ruins, Ojo Caliente, NM.

When we reached Ojo Caliente, I was finally able to hike!  I spent part of our first morning heading up to the Posi Ruins, where there were old pot shards a plenty, along with amazing views of the Sangre de Christo mountains.

Sunset at Ojo Caliente

Sunset at Ojo Caliente

The sunsets were also fabulous, as were the dips in the various pools – iron pool, arsenic pool, soda pool.

Taos Pueblo

Taos Pueblo

We drove up to Taos and enjoyed shopping and the galleries in the downtown area.  We spent a morning at the Pueblo, eating fry bread, talking to the locals, and enjoying the sites.  (I know!  Fry bread.  But it was so good.)

During the trip, my mom and I got a chance to hang out on our own, which we rarely get, and never for so long.  We had some good talks, both among ourselves and with others, with topics often centered on cancer (of course), but also ranging to other areas.

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The energy vampire

I’m being stalked by a psychic vampire.  She’s the one who only has interest in me because I’ve got cancer.  Who, instead of adding to my life is sucking energy from me.  She monopolizes my attention at social events, inundates me with information that I don’t want or need, and has talked about me with others.

The kinder, gentler side of me acknowledges that she means well, but every other part of me shrieks, “I don’t care!  Make it stop!  Make her go away!” 

My friends and support group have counseled me to not respond to phone calls or emails – easy enough.  The other part of their advice is harder; when I see her in person, I should shut her down immediately.  “I don’t want to talk about this now.”  This is difficult for me on a couple of levels.  Of course it is hard to do something that might hurt her feelings.  It is also difficult for me to voice something that is a bit of a lie; I want to talk about all of this – the cancer, my health, the uncertainty I’m living with, thoughts of death and dying; I just don’t want to talk about any of it with her!  I don’t want to spend my time with someone who only sees me as CANCER VICTIM.

I know that I will need to learn to increase my boundary setting skills.  She might be the first of her kind that I’ve met, but she probably won’t be the last.

For those wondering how to best deal with a person living with cancer, I’d refer you to this blog post by Lisa B. Adams.

What to say to someone with cancer/thoughts on how to be a friend to someone with a serious illness

Lisa talks about some of the stupid things people say and gives hints on what are better things to say.  One of her hints that hit home for me was “One thing I think is very important is to always say to someone who is ill or has experienced a death in the family: do not write me a thank you note for this. Do not feel the need to answer this email. Do not feel the need to call me back.

When I was first diagnosed and immediately after my surgery (yeah, all of less than 2 months ago!), I received lots and lots of cards, calls, emails, packages.  And my brain was complete mush – I didn’t have the capacity to be able to answer everyone, thank everyone, even to acknowledge everyone.  Really, if it wasn’t right in front of me at the moment, it wasn’t in my mind (sometimes even if it was in front of me at the moment!)  Knowing that it was OK to not respond was a huge relief.  I could focus on healing and figuring out where my life was going with my stage 4 diagnosis.

I am muddling my way through this cancer thing, and I know the people around me are, too.  So as long as you’re able to view me as Lisa, not as Lisa’s got Cancer, then all will be good.

Layover in LA

We were all geared up to have to sprint to the next gate when we landed in LA, but upon our arrival, we found that our flight was delayed by an hour and a half. I figure this is the perfect excuse to do two things – update the blog and meditate a little while.
I want to find some deep parallel between a delayed flight and having cancer, but besides the fact that they’re both a pain in the ass, I can’t find one. If I really stretch it, I can point to blog writing and meditation and say that both the flight delay and the cancer diagnosis can make you stop, slow down, and take care of things.
Or maybe it is just the thin airport air that is making me play arm chair philosopher.
Time to go meditate for a few.

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!

Visiting the vampires

Today is my lab test day. Each week I have a few vials of blood taken out and tested. My left arm seems to have a semi permanent bruise in the crook of the elbow, to the chagrin of some of the techs. They don’t like to leave bruises. Seems to be a point of pride for them.

I’m just glad that they are all so good at sucking my blood out. I’m not comfortable with needles – who is? – and have had some bad experiences where they’ve had to poke me 7 or 8 times before getting anything.

Now, though, I can approach the blood draws with a sense of calm. I do a few deep breaths and just go with it, even chatting up the techs a bit.

Because it beats the alternative.

Now on to the pharmacy.

Surviving. Living. Thriving.

“You’re not a survivor, Mom!” Molly said when we went to check in at the Relay for Life this morning.  “Au contraire mon cheri.  I’ve survived cancer for 51 days since my diagnosis,” I replied while picking up my purple t-shirt.

To be fair to my younger child, it was kind of a wake up to me when I first encountered the idea of calling myself a cancer survivor, as opposed to a cancer patient.  “Don’t I have to beat it, first?  Doesn’t it have to be cured?”  The second question is more pertinent to me, since there is very little likelihood at this time that my cancer will ever be considered to be cured.  I may not die from cancer or cancer related issues, but I will probably die with cancer.

Immediately after diagnosis, I went around feeling sure that my days were severely limited, that I’d be lucky to see my next birthday (in November, for those keeping track).  I know that many in my family were having similar reactions.  But, as I’ve gone through the surgery to remove my kidney and have healed well from that and am feeling really quite healthy, I’ve started changing the tune in my head.  It’s no longer a funeral dirge, and while it may not be the most upbeat pop song out there, it is a comfortable and generally happy tune.

I don’t feel like a patient.  I don’t feel sick.  I don’t act sick.  I’m not in the hospital.  So describing myself as a patient seems alien.  But at the same time, the word survivor isn’t always comfortable for me – again, coming back to the question of “Doesn’t it have to be cured first?”  Looking around the internet, it appears that I’m not alone in this discomfort with the term.  Perhaps some of that comes from a discomfort with the ideas of death and dying;  we want to know we’re going to live through something.

I am still not comfortable yet with the idea of dying.  At least, not of dying in the next 20 years. (Will it ever be comfortable?)  But it’s less about not wanting to die and more about wanting to live.  And not just live, but to thrive.  I think I’m well on my way to that, for how ever long I’ve got.