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.

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.

On the trail again

Recently I went to a writing group for cancer survivors.  The coordinator gave us prompts, letting us write for several minutes after each prompt.  I was surprised to find that much of my writing that day had to do with hiking.

It’s been many months since I’ve been able to take a proper hike – and even more since I’ve taken a proper hike.  Between the cancer diagnosis and subsequent surgery, the job from hell before that, and a long bout with bronchitis, I haven’t been in a place to hike since before Christmas.

God, how I miss the trail.  There are moments on the trail when my heart feels like bursting.  When I look around, amazed by the greatness, the beauty, the power.  When a cool breeze tickles my face, when I’m on top of the world, looking down on everything.  When I feel at one with the universe and all the life it holds.

I feel strong on the trail.  Even when I’m huffing and puffing and stopping every 2 minutes because the path is so steep, I feel strong.  When I get blisters on my feet I feel strong.  When I flop down on the ground, utterly exhausted at the end of a hike I feel strong.

It has been almost a month and a half since my surgery and I feel like my body is almost ready to hike again.  (Apparently, my brain is already ready to go.)  My stamina is up – I can walk 2 miles on flat ground now.  The lingering pain around my incision is gone.

Next week I’m traveling to New Mexico and I am packing my hiking shoes.  It may be a short one, but I plan to hike a trail while I’m there.  It’ll be the first of many more trails in my future.

Complementary Medicine and all up in my beeswax

While I am going through my targeted therapy with pazopanib, I am also keeping an eye out for complementary and/or alternative care options.  I have a sweet friend, Jule, who has offered me weekly chiropractic visits with her.  She gets to feel me up, I walk out feeling lovely and loved, and we both get to spend a half an hour a week being with each other.  I feel so honored to have her treating me and I love getting to know her even better through our time together.

I’ve met with a nutritionist and am on the road to making what I eat do the very best for me.  I am taking more vitamins and supplements (all with my oncologist’s ok) to fill in any holes that might be missed in the diet.

I have been practicing guided imagery and last night tried my first run with meditation (without the guidance).  That was hard work, leaving me fairly exhausted after 15 minutes.  I think that I might have had a minute, total, of focusing on my breath and not other things.  When I completed my practice, I had a sense of calm and relaxation.  Really, it kind of felt like I’d run a mile or two, without the physical pain that would give me.

On Tuesday, I went to a retreat where they offered sessions of healing touch.  I lay on a table for about 35 minutes, while a woman lightly (very lightly) touched me or ran her hands over or near my body.  I didn’t notice any changes while this was happening, but I did take the opportunity to enjoy the quiet, restful time on the table.  That evening, after running around much of the rest of the day, I went for dinner and shopping with a couple of friends.  Both commented on how much energy I had (something of an anomaly lately), but it wasn’t until Wednesday that I thought there might be a connection.  I don’t know if there is any causality there, but I have felt more energetic the past few days.  I’m willing to try it again (and maybe even pay for it) to see if anything similar happens.

I also had a remote reiki session before my surgery.  Now, I entered into that fully and completely skeptical.  I mean, I can understand how someone in the room might, possibly, have some influence on your body, but from miles and miles away?  Well, ok, it’ll be a chance to just lie quietly.  And then all of a sudden, the area around my left kidney (I still had it, or the tumor around it, at that time) got very very warm.  That warmth also moved down my right leg.  So, count reiki as another modality that I’d like to try again.

Now, I don’t believe that any of these other care options are going to cure my cancer, but I hope that they will help me with my overall mind and body health.  And I do see a difference in my life and my health.  My oncologist said today that I look very healthy, and that he was very happy with my lab work.  People have commented on how good I look – not just for a cancer survivor, but in comparison to how I used to look.

Now, all of that being said, I’ve started receiving those emails.  The ones with the miraculous cures that the native Americans/Pacific islanders/Chinese have known for ages, but that western medicine practitioners won’t believe.  Blah blah blah.  I’m going to have to gently let some people know that if they want to pass anything on to me, they should please look up the information first; make certain it comes from a reputable source, isn’t a scam, and preferably locate clinical trials or *real* medical journal articles on the subject for me.  (There’s the librarian in me coming out.)  I don’t want to go through those processes for every bit of information that comes my way.  I don’t even want to have to think for a moment about whether that claim might be true or this root is the one before I delete the email or toss the faux journal into the recycling.

Mother’s Day

I have so many wonderful women in my life and it seems like a fair number of them have lost their mother at a young age.  Many posted about their mothers on Mother’s Day, and it left me feeling despair that my daughter would be doing the same in early middle age – noting the year when she’d had more Mother’s Days without me than with.

But I look at these women I know and I can see how they’ve thrived and blossomed and I know Molly will be ok.

And I remember that Ihave so many wonderful owmen in my life, and just as they give their love to me, so will they offer it to my family when I’m gone.