Tag: comfort

Self Injection Day 1: I learned how to shoot up!

The calm surrounding restarting the drugs evaporated about two hours before I had to head up there.  I started getting headachey and overheated.  I tried everything to make it go away (eating, drinking, pain killer.) it wouldn’t go away b/c it was psychosomatic.  This was happening a bit in PDX. My Dr there explained to me that it was a very well documented phenomenon that chemo/interferon patients get psychosomatic symptoms *before* they go to actually get the drug.  So chemo patients will start puking in the morning before they go to the hospital for chemo.  In my case, I got headaches, feverish and even more tired in the hour before I was going to leave for infusion.

My appointment was for 5pm.  I got there 15mins early.  But when I arrived at the office, it was like an episode from the twilight zone.  All the receptionists were different, they didn’t know the nurse practitioner I was there to see, they didn’t my Dr’s Physician’s Assistant, and they didn’t even know my doctors phone number. Apparently this office is used by different doctors each day.  Rather than have one set of receptionists and assistants, each doctor has their own set of receptionists and assistants.  I guess they just sit in a cubicle the rest of the time answering calls and scheduling appointments.

So I call up to the receptionist who is in her cubicle, and she says that she will page the nurse and send her down.  15 minutes later I call back, but it is 5:02 and the call goes straight to the message system.  The twilight zone receptionist leaves.  Doctors leave with their bags. You can see where this is going.  Knocking on doors I found someone who knew what I was talking about and who i was looking for.  He made some calls, and actually spoke to her: there was an emergency in the chemo clinic, but she would be down as soon as she could get there.  

About an hour passed.  I was starting to get more psychosomatically symptomatic.  Plus I was getting tired and hungry.  Right when I was really ready to walk out the door I decided to try the open-the-book-when-waiting-for-the-bus technique.  Right when you give up on the bus coming quickly, sit down and open up your book to read, the bus inevitably shows up before you finish the first page.  Its like Law of Nature.  So I announce that to S, who doesn’t quite get me, and I go turn on one of the computers in the waiting room.  They have two public computers to keep people from getting too bored.  And sure enough, right as the first little windows flag shows up in the boot cycle, the door opens and the nurse walks in.

After all that waiting, the injection was really easy.  I’m glad I got instruction, b/c I would have screwed some things up.  I would have pushed the needle in too far.  And not done it at the correct angle.  As is, I didn’t really do it at the right angle.

Pushing the needle in is painless.  As in, I couldn’t actually feel the needle enter my skin.  It was weird that way.  Injecting the IFN stung a bit.  I had to do it slowly.  I did the first half, then I did the rest.

After I did the injection I had this 5 minute spurt of energy, optimism, and other kinds of good feelings.  It was partly b/c it was over, and it was soooo much easier than I thought it would be.  But it was also probably partly chemical. I’m sure there were a lot of endorphins, or adrenaline or whatever that my brain pumped out when my brain groked that i *really* was about to stick a needle in me.  It was so weird to be looking down and think “I’m going to stick this needle into my stomach…”  and then to do exactly that.

Train ride sucked, but not that bad.  I got the headaches for real right as we turned the corner to the apt.  I got some chills, but not that bad.  I should transition to a mild fever shortly.  But overall, not so bad.  Not as bad as restarting.  Which is interesting because I am at the same dose that I was at for the second two weeks of IV, I just take it 3 times per week, rather than 5 times.  I guess the body doesn’t absorb as much when the IFN isn’t mainlined into the vein.

Verdict: Ice Vest Rules!

The ice vest totally worked.  I feel better than I have felt since I returned to NYC, even though I had a full day.

I wore it for 3 hrs running errands in the morning and in in to the studio.  Refroze the ice packs (though I don’t think they fully froze b/c they were stacked on top of each other…). Then I wore it to meet BH for lemonade, ride the subway to chinatown, get a massage, and then eat dinner.  After about 4 hours, all the umph was gone from the packs, so I took it off for the last ride home.

Frankly, I think everyone who gets overheated should be wearing one of these during the summer here.

Yay!

Day 16 with the Oracle of Not Doing

Infusion was uneventful. Passed my blood test.  Got the drugs.  No major side effects.

I was pretty stressed yesterday and this morning.  I got really anxious before Monday treatments because the side effects start again IF my liver function is within a normal range.  I was really nervous my liver would be working too hard and I would not be given the drugs — I have a plane ticket out of here on Saturday morning, and now I know that I am going to be on that plane.  Nice.

Today I spent the morning with LK.  She has been here since Thursday, and took part in the EPIC pizza party and hike.  Today was a little bit of solo time with her.  I met her cousin, and she told me stories about her family.

Early on in my diagnosis I spoke to LK on the phone for a long time.  She kept saying “so M, you realize you are really going to have to change how much you can do, and you are going to have to say no, and not do things.”  And I said something like “yes, yes, just after I finish this next project” or something like that.  And she repeated herself a little more insistently.  And then she offered to say no for me.

The deal was I would either email her to ask if I could do something, and she would tell me “No.”  Or I would simply know that she would say no, and say no myself and then tell her.  So here is our email exchange.  She became The Oracle, and I became the Supplicant.  NOTE: This was all written before the positive result from the lymph node surgery and the second major surgery.

Dear supplicant,

The Oracle accepts your energetic shifts regarding your grant, your now-ex, and your mother, but she wonders about your priorities, given your decisions about how to compose this e-mail. The Oracle would appreciate less self-reflexivity in your tone, because really, she already knows.

When it comes to mothers, there are no mistakes.

Perhaps your mother would like to sew you something to protect your calf from new york city, brooklyn, car insurance, and other contributing factors. It could also have reflective tape, and maybe a family photo tucked inside. The Oracle senses that your mother might not be sure how the pinstripe suit will help you with your skin cancer. Is the fabric supposed to shield you from the sun while you are riding your bicycle? Are you going to grow your sideburns long and buy a big black hat?

The Oracle is considering visiting Portland at Christmas. Would the supplicant join her on this path? The Oracle likes your parents, and is nearly envious of their ability to engage intellectually with a variety of topics.  Oracles cannot, of course, be envious, but if they could be, she would be. The Oracle is also curious about their house and how the kitchen looks now. Although I sense its quiet, pulsing perfection, the tactile reality of opening the fridge would give the Oracle great pleasure.

The Oracle doesn’t really care if you apply for that grant, because many of her fellow priestesses are approaching 50 years old and have applied for that grant for the first time. The Oracle considers SL to be very Wise in his proclamation that there will be time for things like this later. The Oracle will make psychic contact with SL and invite him to join the circle of healing currently in place, held together by an infinite number of people and animals, most of whom you do not know, all of whom wish only for wholeness, smooth scars, and neat incisions.

The Oracle loves you. Take five deep breaths, shut your eyes, and imagine your parents’ refrigerator. Then imagine opening the fridge and being one with its bright, shiny light, sinking into its sterile, nurturing shelves and merging with the salad greens until you feel washed, spun, crisp, and good enough for your mom to present in her favorite bowl.

yours in bliss

LK

On Mar 8, 2008, at 8:09 PM, m wrote:

> Dear Oracle,
>
> I have forgotten many of the things i have not done.
>
> You could say this was a good thing: to forget the things which you decline.  Mostly it was because I am strongly remembering three things I decided not to do, two of which were hard but good to do, and struck hard at my spirit, and the last of which was something I should not have said no to.
>
> I did not apply for a big grant.
>
> This made me feel like my illness and my resolutions surrounding it were finally, actually impacting on my so-called life.  The fact of the matter is that my CV is not my life.  I know, oh Oracle, that I must repeat this many times.  Also, another fact of the matter is those things are such crapshoots, though I do feel like I had a better shot than in previous years, and supposedly getting into final rounds is good just by itself and often leads to other invitations.  Yet another fact of the matter was that I didn’t really have a project that would work for them anyway.  SL reminded me that we aim for long so-called careers, and will be around and alive for the next round in three years.
>
> I did not succumb to the relationship-games started by the woman I was dating
>
> Which is to say: we broke up. She started a fight over my defining boundaries.   I insisted that my boundaries were important.  She said that it was not okay with her the way I was “distanced.” I think she was bluffing, and wanted me to give in to her and come running back.   She thought that I was going to say ‘all right, for you, just this once’ or something.  But i did not.  This caused her to cry and cry.  This was exhausting.
>
> This is overly simplified, as the Oracle does not need the details, but rather the universal truths.  The only detail the Oracle might need to know was that the fight she started was over whether I should sort through her automobile registration and insurance papers to make sure they were in order.  She made it sound like she had spent most of her time ruminating over this seemingly insignificant detail since it had happened five days earlier.  Needless to say, it was an inappropriate request to make of someone you have been dating for a couple of months on weekends.  And so I said no.  And then when she started relationship-games, I also said no.
>
> I also said no to my my mothers repeated requests to help-me-out-in-my-time-of-need.  This was a mistake.
>
> I repeatedly explained to her that there was nothing she could do.  She could not fly here and come take care of me; it would just be more difficult for me, as I would feel compelled to take care of her and she would get in the way of my daily life, which has to continue in some form or another.  I turned down her request to send me money to pay for… take out food… cab rides… etc.  I told her I would take more cabs, and that I could pay for it.  I told her that take out makes me feel like shit.  This is true.  She just got more anxious.  So today I told my mother she could help in whatever way she wanted.
>
> But Oracle, I arrived at an even better way for my mother to feel like she is involved with me and helping-me-out-in-my-time-of-need.  I invited her to make a project with me.  I want to make a pinstripe suit with reflective stripes.  She sews. She is going to do some looking and talking to people. I made a wiki page for the project, made her an account, and invited her to post her research the wiki.  Nevermind that in a spurt of research after I got off the phone, I found someone in the UK who has done it, and patented his process. It is the process of sharing with her that matters, right?
>
> your supplicant
>
> m
>
>
>
> On Mar 6, 2008, at 2:28 PM, LK wrote:
>
>> hon, the oracle has been so slack. I’m sorry. look for her feedback soon!
>>
>>
>>
>>
>>
>> On Mar 1, 2008 at 1:02 PM, m wrote:
>>
>>>
>>> Dear Oracle,
>>>
>>> This week i had to do things I had previously said yes to, and could not say no to.
>>>
>>> The planets were already spinning.
>>>
>>> When my wounds heal, I will pretend to join a gym so I can use their sauna.
>>>
>>> I will perform the breathing exercise as soon as my cleaning lady leaves.
>>>
>>> This week I asked for help.
>>>
>>> I asked someone to come clean my apartment (and paid them).
>>>
>>> I asked someone to rub my back (and paid them).
>>>
>>> I asked someone to rub my body and touch me gently (I did not pay them, they are my regular intimate)
>>>
>>> I asked several people to spend time with me, for lunch, for dinner, just to be in the same space
>>>
>>> I asked several people to accompany me to my doctor’s appointments, and wait for me until they were over.
>>>
>>> I asked my friends to send me funny things from the Internet because laughing makes me feel good.
>>>
>>> I did say no
>>>
>>> I said no to someone else’s intern who wanted me to hold their hand through a software installation
>>>
>>> I said no to three people who wanted help building websites
>>>
>>> I said no to a meeting I did not have to be at
>>>
>>> your learning supplicant,
>>>
>>> m
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> On Mar 1, 2008, at 2:12 AM, LK wrote:
>>>
>>>> Dear Supplicant,
>>>>
>>>> The oracle requests that you perform two exercises. One involves breathing through your nose one nostril at a time. Hold the other one shut. breathe in, change nostrils, then breath out and in again. Change.
>>>>
>>>> The other involves locating a sauna in your neighborhood and sitting in it. You might have to pretend to join a gym. It’s probably better if you wait for your leg wound to heal somewhat first. The oracle has heard good things about this place, which while not quite in your neighborhood, feels like a resonant harmony with your current state: http://www.russianturkishbaths.com/enter.html
>>>>
>>>> “being early” is an intense space to occupy. Be very careful. Be sure to look at a wide variety of colors, especially blues and purples, whenever you’re early.
>>>>
>>>> yours in bliss,
>>>>
>>>> LK
>>>>
>>>>
>>>>
>>>> On Feb 25, 2008, at 7:47 PM, m wrote:
>>>>
>>>>> Dear Oracle,
>>>>>
>>>>> I pull at my spinning planets to slow them down:
>>>>>
>>>>> Today I informed a colleague that I would not be able to be a guest lecturer in her class, as previously arranged.
>>>>>
>>>>> Today I told a client I had a health issue and would not be able to deal with their website issues at my usual speed.  (And then delegated it to my assistant.)
>>>>>
>>>>> Today I am going to be early.
>>>>>
>>>>> in supplication and heavy-yoga-breathing
>>>>>
>>>>> m
>>>>>
>>>>>
>>>>> On Feb 25, 2008, at 10:41 PM, LK wrote:
>>>>>
>>>>>> Dear Supplicant,
>>>>>>
>>>>>> The oracle requests that you send data re future activities so that she might better channel your unresolved energies.
>>>>>>
>>>>>> Presenting successful resolutions to the oracle only effects currently spinning planets at their current spin rate.
>>>>>>
>>>>>> Continue with the prostrations, as directed.
>>>>>>
>>>>>> Yours in bliss,
>>>>>>
>>>>>> LK
>>>>>>
>>>>>> On Feb 24, 2008, at 4:53 PM, m wrote:
>>>>>>
>>>>>>> Oh Guru of Calm,
>>>>>>>
>>>>>>> Oh High Priestess of Doing-Nothing-Ness
>>>>>>>
>>>>>>> I report these things which I am not doing:
>>>>>>>
>>>>>>> I did not go to the big event at the studio on Saturday, even though everyone else was there.
>>>>>>>
>>>>>>> I am not doing the alumni interview.  I contacted the Alumni chair, and told him i had an emergency and could not do it.  His problem now.
>>>>>>>
>>>>>>> I am not going in to school for the applicants job talk on tuesday.  Emailed in, and told them I had a medical procedure on monday.
>>>>>>>
>>>>>>> I am not going in to the studio on Tuesday, even though I dont have to go in to school.
>>>>>>>
>>>>>>> I turned down an interview for a exhibition catalogue. They can reprint something i already did. Or not. That is enough.
>>>>>>>
>>>>>>> Your supplicant initiate
>>>>>>>
>>>>>>> m
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>
>>
>

day 12, a meditation question

The drugs were fine today.  I mean, I felt like shit, but it was okay.  I am not going to let it keep me down.  I had headache and chills and fever when I got home.  Not as much of a spike as the first day restarting, but I felt worse longer.

Last night I had a meditation conundrum.  I realized I might be doing it wrong.  I was using music to block out the sound.

so I asked three meditation-minded friends a question:

can you listen to music?  what do you do when your environment is really loud?

i know you are supposed to do it silently.  and i had just listened to one guided meditation by gil fronsdal where he says explicitly that it is not allowed, and that it is a crutch.  his reasons make sense.  but he lives somewhere in marin county.  you could hear cars driving by every three or four minutes, but that was the only sound.  plus he’s an expert, and i’m a beginner, and I need this for my health.  it may be a crutch, but people with broken legs use a crutch until their leg is strong enough, no?

when I do it at the infusion center at the hospital i use early ambient brian eno to block out the noise.  which is about as close as you can come to listening to white noise.  the center is loud, with phones ringing and machines beeping, and all kinds of old folks gabbing away and trading war stories about their chemo?

or also thinking about when i go back to nyc, and the apartment is so loud.  just the apartment.  people upstairs, people in hallway, friggin loud refridgerator.  i dont expect that will be anywhere near as bad as the hospital, and yet being able to do it at the hospital is crucial for my calm.

I asked three people.  My massage/healer/counselor person, HT who is a verifiable Tibettan Buddist (proving her street cred by flying across the country to hear one of the holy men speak), and SL who whispered something about learning to meditate across the studio table very early after my diagnosis (with his trademark crafty one-sided raised eyebrow.)

My massage person said that yes, it was a crutch, but because I was not using the music for entertainment, but for more of a white noise effect, it was okay for now.  The most important thing was that I was getting what I needed from the meditation.  That the music is familiar to me, and therefore comforting; part of the problem with the the infusion center is that it is scary, so the comforting effect may help me be more mindful.  (we spent more time talking today, than we did massaging.  that is def what i needed today.)

SL is hardcore (as usual), while acknoweldging that rules are always meant to be broken (also as usual).  He wrote:

I use earplugs sometimes.  There’s also something called sound meditation where you try to hear every sound but not focus on any of them.  Or something like that.  I have only *heard* about it. har har.

This might be helpful?  I haven’t heard it myself…

http://www.buddhanet.net/audio-meditation.htm

Mindfulness of sound and thought, firstly instructs on how to use sound as an object of meditation then asks the listener to shift attention to thoughts. The second part of this track is more instruction on how to manage difficult thoughts when they arise rather than a guided meditation.

But the thing to remember is that the noise out there is just like the noise of your thoughts. They’re just gonna be there. Always. And what you’re learning is how to get past the noise (noisy thoughts or audio noise) and let it go. A busy room is tricky, but it’s a great place to practice!

Also, do what you gotta do.  The rules aren’t rules.

HT is a softy, though wise. She wrote:

of course.

and no, you are not supposed to do it silently. at least, it’s not the only way. that’s only a part of it. and there are totally all kinds of different ways to meditate.

yes, the music is a crutch, but i think it is important to identify what it is aiding. it’s aiding you to stay calm, which at this time i imagine is very important in getting through your treatments.

in the future, when you have a little bit more ‘space’ (the japanese word is ‘yoyuu’…can’t quite describe it but maybe S would have a better word), when you’re back in nyc etc. i imagine that would be a situation in which you could develop your ‘meditation’ further- which from what i have learned so far is about trying to be in the present, looking at oneself, and it is a way in which we can develop our mind as a muscle- our mind to stay calm amidst all the chatter of thoughts, desires, insecurities, the sound of cars, apartments etc.

So I went halfway.  I listened to the guided meditation tape, but I turned up the volume so that the hiss of the recording noise and the MP3 compression noise was loud enough to just dull the sounds around me.  I could hear talking, but I couldn’t understand the words.  That was enough.  I just need to get through these next two weeks.

I did get a chance this evening to meditate “in silence.”  Right before dark I walked up the Marquam trail to Fairmount, a steep uphill 15 minute hike.  When I got to the top I sat on a rock and waited for my dad to come pick me up and take me back down.

It was dark by then, and not many cars were driving by.  It is true, what SL said.  Its all noise.  Even the swishing of the branches of the trees, the rustling of the leaves, and the scurring of the squirrels are noise that you have to block out to concentrate.  I could see the lights of each car through my eyelds, and I spent most of my time resisting the urge to look and see if the car that was approaching was going to stop for me.  As it turns out I was distracted by most of the cars that passed, but not my father’s car when he arrived.  Maybe he turned out his lights?  Maybe he was just going slow enough that the engine was mostly silent.  His arrival and my opening my eyes was very peaceful.

Then I got rather feverish on the ride back down(!)

UPDATE: SL points out that I got my facts wrong, and that it is easy to be a hater:

Also, Gil Fronsdal is in Redwood City – which is why you hear the cars going by in his talks.  Kornfield is in this totally remote part of Marin County or Fairfax or something.  Where it is almost totally silent except for the trees and everything else.

What’s funny is when I’ve been to Spirit Rock (the remote location) people will come in late and they make noise and you just *hate* them.  Even though you’re not supposed to.  “what the fuck just sit down already”  Then you gotta work with the noise AND the fact that you’ve turned this person you’ve never even seen into the worst person in the world.

I’ve heard about long retreats where people fall asleep and start snoring.  Or my friend Annie was on a silent retreat (no speaking for days) where someone’s watch alarm went off every hour or something and they never thought to turn it off.  When you’re not speaking to anyone it’s really easy to turn that person into the worst person in the world in your mind.

104, but thankfully that’s not my fever

it was so hot here in portland this weekend.  104 degrees yesterday.  something a little less today, but with nasty humidity.  If feels like a rainforest.

i keep having to lie down with an icepack on my chest.  a big icepack.  it takes the edge off for a bit, but then i’m hot and sweating again.   my mouth is all parched and cottonmouthey.  no matter how much water i drink.

and this is *with* air conditioning.  i can’t even imagine what this would be like in nyc with my wall AC.  wow.

Chemo day 3

Chemo day three was uneventful. I got myself psyched up to go, but by the time we were halfway there I was deflated again.  And then I realized I had forgotten to take my anti meds (lexapro and klonopin) that morning, so I felt defeated.  I shuffled in to the clinic, while my mom went back to the house for my anti meds.  They hooked me up, and the IV happened.  I shuffled out of there and crumpled into my seat in the car.

My friend AC came by that evening.  She is a friend from high school, who I fell somewhat out of touch with for a while, but have been back in touch with over the last two years.  My mom made dinner, we chatted, and then I went upstairs to rest for a bit.  Anna made her way up, after attempting to help with the dishes (my mom would not let her, LOL.)

We talked.  I asked her to hold my hand.  This is something I have found really comforting: holding people’s hands.

And I asked her to hold me.  I was a little nervous about that, but she understood and was glad to be able to.  It is so comforting to me to have people hold me, but it is something that I find really hard to ask for.  Both because I feel like I can only ask certain special people.  And b/c in the wrong context it could imply emotional and sexual things that are not meant to be implied. It helps that AC is gay, so there it is clear that my request was def not a come-on.  LOL.

She held me.  It was so nice.  I cried.  I find I can only cry when someone is holding me.

Before I started the anti drugs I was crying all the time.  I would sit down on the subway, and start crying hysterically while some poor 12 year old girl stared at me with compassion and curiosity, and her mother tried to not to look.

Now, the anti drugs keep me from crying.  The lexapro makes it so i can’t cry. The klonopin makes it so i dont care that i cant cry.

Though my doses are low, I think.  10mg of lexapro and .25 & .5mg of klonopin.  At least that is what a nurse said today when we were talking about adding back in some Ambien.

Anyway, I cried, AC held me, and we talked about everything that was going on.  I hadn’t really told her the story, so I did.  I showed her my scars.  We talked about how it was changing me.

Being held was so wonderful. It is the thing that I want the most.  I think that it is a major absence in Cancer care.  They have massage, and accupuncture, and complementary care, and nutrition.  But no holding.  Can you call it Cancer Cuddle Care?  I know, it sounds jokey, but I am completely serious.

The problem is that there are undertones to it. Our society needs safe boundaries for anyone to touch anyone else.  And people would have to get certified in Cuddling.  MPC: Masters in Professional Cuddling?

At some point after I broke up with K, and before started seeing O, I desperately wanted to be held. In a non-sexual way. I went through a laundry list of everyone in New York I could ask to do it, and decided they would either be freaked out by it, or read it as a sexual invitation (and accept).  I seriously considered hiring a call girl to come and hold me for an hour.  No sex, just holding.  I parsed the listings on CL, and realized that wasn’t going to work – they were either cracked out or sexed up.  There were no peaceful, caring, call girls on CL.  LOL.  But it is kind of indicative of how much I wanted to be held.  And it was also kind of a low point.