Wednesday, August 31, 2011

Today

I showed up today and before I even got checked in my social work friend and supervisor greeted me.  Then I .started out with a blood draw to get things going.  My favorite phlebotomist isn't there on Wednesdays, but I had a nice discussion with her replacement.  Then I went into the chemo room, took some tylonol and got settled into  my chair, the nurse took my blood pressure, started the IV and gave me a load of benedryl. After about half an hour, started the rituximab.  My professor and friend showed up and talked and kept me company for a couple hours.  The social worker, my former internship supervisor came by and chatted for a while.  Then lunch came.  About then I had a little bit of itchy feeling in the back of my throat.  So they stopped the rituximab for a bit, loaded on some more benedryl and when the itchy went away started it up again.  When it was just about done, the nurse community coordinator came by to chat.  She told me to tell my mom that there were a whole bunch of motherly types, including her and the social worker, who were looking after me here. And to call if I needed anything at all.  Then I wandered to the little boys room, it is amazing what a liter of saline can do.  And in a few more minutes it was all done, the unhooked me and let me go.

Then I went and finished my talk with the social worker, and as I left I walked through the serenity garden, sat on a bench to listen to the waterfall for a few minutes, got really sleepy and took a nap on the bench.  I am feeling a little achy here and there and have had a little bit of inflamation like I have a bit of a cold, and I still feel pretty dopey from all the benedryl, but other than that I feel great.  

So I am eating some left overs and watching Robin Hood, Men in  Tights.  I didn't think I could follow any story line more complex, and this way I get laugh and snicker a bit.

Soon it will be off to bed.

Tuesday, August 30, 2011

It was the mousse

The walk around the lake was wonderful.  I am still not sure why dog owners have to pick up after their charges and carry it around in little bags when horse owners don't even have to kick it off the trail.  I think next time I will just carry a little scoop and just place Mader's poop on the next pile of horse apple's I run across. I guess some horse owners think their stuff doesn't stink.

The view was wonderful, and I was greeted with the sight of a harvester slowly chewing through a wheat field a couple of hill tops away.  The clouds were white and fluffy and the air had a coolness to the slight breeze.  Mader was full of enthusiasm and easy to walk.

Olive was out of the chocolate torte, so it was across the street to Brasserie 4.  Even in the 'to go box' the  arrangement is artistic with almond brittle down the side, a tub of anglaise sauce and some choice berries.  And if you have never been to Brasserie 4, you should make the trip, it is Ooooooooooooooooooooooooooooooooooooooooo, OOOOOOOoooooooooooooooooooooo, so good, it really is.  And I can enjoy that little scoop for an hour.

See you in the chair tomorrow.

Tomorrow... I haven't written it yet, but this may be some heavier stuff

Wow, I am really feeling a lot of emotion today as I think about tomorrow and my first day of treatment.  I don't think that I am all that worried about the treatment itself.  I may have a little anxiety simply because I don't know how I will react to the treatment.  The bulk of the emotion is something more.  I have been noticing it building in little bits and pieces.  The day I heard back from Stanford was a little disappointing, not because of the prestige of the organization but for what it represented.  The hope of something better.  I had no problem pulling the trigger and getting the treatment set up from that point.  Reasonably I totally agree with the rituximab treatment.  Last night I was a bit anxious and couldn't seem to get settled. I got to sleep ok because on Sunday I ran 4 miles following a thunderstorm and then walked home.  That was more than double the mileage I have been running at one go the last few weeks.  I ate some good food, but a little on the bland side because it was antiinflamitory.  So around bedtime I was having some cravings and ate a nice Claussen pickle and some dip I made from diakon radish, cucumber  and cashew milk,  almost tastes like tazaki.  Anyway, dreampt a lot and just didn't sleep too fitfully.  Got a coupe of things done in the morning and then got lost reading and returning some emails.  Thought I was late to my qi gong class so rushed out the door and got there 20 min. early.  It starts at 11:30 not 11:00.  So I ended up having a very nice conversation with the teacher about why I was there, how the training she had in soaring crane qi gong was related to cancer an some of the eastern theories of how and why it works.  Class was really good, excepting that as I concentrate I tend to hold all the tensions tight in my shoulders.  She mentioned it once and I immediately dropped my shoulders and a lot of tension with it.  Then I came home to make a quick sandwich and off to my client.  After I sat and ate my sandwich, I felt so relaxed and tired.  I micro napped  5 minutes at a time for about an hour and a half all together.  I realized how much of the tension I had been holding was gone.  I can also feel my emotions that I have been blocking and avoiding more vividly.

As I drove home from my client I realized this dread settling heavily in the pit of my stomach.  Somehow, something about starting treatment makes it more real.  Like soaking a black and white negative in fixer, or adding a few drops of hardener to fiberglass resin, it seemed there was at least a bit more distance between us before tomorrow.  Tomorrow the image becomes that much more real, the glass hardens, there is no going back on this road.  Tomorrow morning, I won't be thinking about it, researching it, discussing it, or planning for it anymore.  The dress rehearsal is over.  This time when the lights come on and the curtain drops, it will be the real deal.  I don't want to do it again, I don't want to have to be again so close to fears that were buried for so many years.  I don't want to be so close there is no way to look away, surrounded by the warm breath in the mouth of death, infused with the reality of a pain filled world.  This is not the world I was made for.  Being once again so close to death is at once invigorating and petrifying.

That is where I will be tomorrow.  Not in shock, not with the cushion of denial, not wondering where this road might lead, maybe I'll even have the courage to leave the safety of intellectual reason to experience the presence of the moment, spending the day with a flower without naming it's parts.  I'll be there...tomorrow.

Today I'm going to walk the dog by the lake, and I might just have a slice of flourless chocolate torte at Olive or a scoop of chocolate mousse at Brasserie 4.

Monday, August 29, 2011

Process Painting the backgrounds of this blog...literally

If you are local to Walla Walla, you might have seen the story in Lifestyles of the UB this Sunday titled "The Healing Arts."   The cancer center oncology social worker, Barbara Bates, started the "Creative Expressions" class that is co-facilitated by Margaret Jamison and loosely based on the ideas of Stewart Cubley and "process painting."  I was fortunate enough to participate in the class in June and July, which amazingly coordinated with the time of my biopsy and diagnosis.  It was really wonderful to have the support of other cancer survivors as I got the news and diagnosis.  Many had experienced relapse and much more difficult treatments than the one that I am expecting.  We all joked and smiled and cried together in the meetings.

Art therapy has proven to be a very effective means to get at underlying emotions for all ages and appears especially useful for children and traumas.  From teaching skiing to psycho therapy, I tend to believe what works with children will work with adults, if presented in an age appropriate way.  Child therapy methods have a way of working without the need to do a lot of discussion and explaining, and as adults the cognitive and linguistic processing is where many of our defenses start to come up and get in the way of  healing and healthy ways of coping and experiencing emotion.

Where process painting diverges from art therapy is in interpretation.  Psychology can get preoccupied with testing, organizing, and defining, especially now with the drive towards "evidenced based practice" and the push from insurance towards the medical model.  Often art therapy is used as a diagnostic tool and for that it must be interpreted.  Even if not used in that mode, it is often a starting platform, and a very useful one for discussion on the possible meanings of the images.  Having an external object somehow helps us to see what is going on emotionally inside.

Process painting specifically does not involve interpretation, it doesn't not focus on the finished product at all.  Rather it works to remove any judgement or criticism creating safe environment for free expression.  In our support group we wouldn't talk about the painting, whether it was good or bad, or what the images meant, rather we would talk about the experience, what it felt like to paint with those strokes, or how were you feeling when you painted with those colors.  Like the name implies, focuses on the process not on the product.

It actually is a difficult thing, as the inner critic seems to constantly pop up saying "I don't like the way that looks...those colors didn't mix well...that doesn't look like a...that looks sloppy...crooked...whatever."  With practice there seems to come a moment when one gets immersed in the moment, all of that fades away and the painter meets the canvas at a deeper level.  It is not something one can "try to do" in the typical way, the fact that one is cognitively trying seems to get in the way.  Rather one has to set up as safe comfortable environment and allow it to happen.  What shows up on the paper is different as well as the quality of experience.

The current background of the tree and mountain is one of the first paintings I did.  Margaret is a professional artist and teacher that did teach us some things about mixing colors and using brushes, to get the juices flowing and give us some confidence with the medium.  She is very careful and purposeful to not introduce any "rules" of art or anything that would imply judgement.  She comments that she often finds her art training at odds with her process painting.  She does have a couple of voluntary tasks to get people into painting initially, and the tree and mountain is one of those based upon a Maori tradition of assessing life direction.  I completed 6 paintings in the 5 weeks of the 6 week course that I was in, and will be changing them as background images here occasionally.

If you are interested, process painting is something you can do just about anywhere.  It isn't too expensive, as you can pick up some art paper, a basic set of poster paints and a brush or two for under $20 .  Maybe even under $10 if you are creatively frugal.  If you wanted you could do it with crayons, colored pencils, and regular paper, though I find having more room on a bigger sheet feels less confining.  You could even buy some sidewalk chalk at the dollar store and do it in your driveway if that felt right.  The only rule is don't judge it, just let it be, let it come out with whatever force and feeling it wants.  It may feel like it has a story and that is ok, it may not, you may have no explanation for it, and that is ok too.  It is deceptively simple, and not necessarily easy, but you are worth it.

Thyroid info

Had and appointment with the Dr. C this morning to talk about the thyroid mass.  Most of it is what would be expected decline and thyroid nodules due to the previous radiation.  There were a couple of solid nodules that correlated with the hot spots on the PET scan.  The next step is to get a needle biopsy http://www.mayoclinic.com/health/thyroid-nodules/DS00491/DSECTION=tests-and-diagnosis  of the solid nodules so they can determine if they are cancerous or not.  Doc is getting that scheduled and said it won't effect of be affected by treatment, so we are still on for Wednesday morning.

Sunday, August 28, 2011

Thyroid mass

On Monday morning I will meet with the Doc. again to go over the plan for the thyroid and whatever other details of the rituximab treatment we need to discuss.  From our previous conversation, the thyroid is not the primary concern at this point, more just preventing loose ends.

Denied...so starting treatment soon

Well Stanford doesn't have a current protocol study running for NLPHL, so the best we have to go on is the protocol from the last study and the recent study from Germany.  If you are interested in the academic details here are links to  articles. Not the most recent one, but ones you can access without an account somewhere.  This first two have a lot of good background info on differentiating NLPHL from classical Hodgkin's http://theoncologist.alphamedpress.org/content/14/7/739.full
http://asheducationbook.hematologylibrary.org/cgi/content/full/2006/1/266
This second one has the basic protocol for rituximab that we will be using. http://bloodjournal.hematologylibrary.org/content/101/11/4285.full

If you don't care to look it up, it is "4 weekly doses of rituximab at 375 mg/m" and we have the first one scheduled for Wednesday morning at 8 or 8:30, I don't remember which.  I have a check in, then blood work, then head to the oncology suite where I get to hang out for 5 hours and let the juice trickle into my veins.  All in all it is a pretty sweet setup, nice reclining adjustable chairs with personal tv's and volunteers who will get drinks, food, and warm blankets if you want one. There are big windows with a great view of the Blues, the only problem is the chairs face the other way.  So I will bring a couple of books and my laptop, and maybe a funny movie like Nacho Libre or something to distract me for a while.

Thursday, August 25, 2011

ULTRAsound

Doc C emailed a summary of the ultrasound results.  There is a mass consistent with multinodular goiter, which was the suspicion.  There was one node in the mass that the radiologist estimated had a 20% chance of being malignant.  It is an easy spot to get a biopsy.

So that leads me to the discussion of  % percentages % and what that really means.  For a little background it might help if you knew that I had a nasopharyngeal angiofibroma when I was 12.  "Juvenile nasopharyngeal angiofibroma (JNA) is a rare, benign, vascular neoplasm that accounts for less than 0.5% of all head and neck tumors." (http://www.utmb.edu/otoref/grnds/Angiofibroma-Juv-NP-070103/Angiofibroma-Juv-NP_070103.pdf) Then I had the first round of Hodgkin's lymphoma, and now the second is a confirmed case of NLPHL which has about 400 cases diagnosed in the US each year.   I'm not sure what that makes the percentage, but I'd bet it's pretty small.  Also consider that Zoloft passed the FDA approval and is prescribed regularly, with only a roughly 65% success rate when the placebo was at 55%,  (I didn't double check my statistics on this but I do remember seeing 1 study with these numbers.)  despite a host of negative side effect that include a number of cases of suicide.

So I have a slightly better chance of not having thyroid cancer than of Zoloft actually working.  I don't find that very comforting.  Add to that my experience of already being in the .5% of head and neck tumors and the 400/311800000 chance of NLPHL.  What are the chances I would get both?? (Where is Jason when I need him, I was a TA for research class, but I am no statistician.) If I have already done both of those, a 20% chance is a virtual landslide in my experience.

That is really the point.  What does the statistic mean and what is it useful for.  As a patient, what is means is really nothing.  What really matters is if I am in the 80 camp or in the 20 camp.  The numbers really don't mean anything to any individual.  Lance Armstrong (in his book "It's Not About The Bike") and other cancer survivors talk about how it is unfair to talk to newly diagnosed cancer patients about their likely hood of survival in percentages for just this reason.  That doesn't mean that they aren't useful in making treatment decisions, but they are only one part of the equation.  There are much less easily measurable, more subjective things such as quality of life, impact and permanency of side effects, and alternatives that don't fit neatly into the statistical medical model.  That is why it is so important for patients to become informed, to look at options, and be a big part of their treatment decisions.

Whooah Nellie,  stopping and getting down off my peach crate ;-)



Tuesday, August 23, 2011

Information: thyroid ultrasound

I had the ultrasound at 10am this morning and it went well.  The technician said it was easy because I had such a long neck.  He said the pictures turned out great, the radiologist would read them today and my doc would have them "in three days." Reality is once the radiologist types his report into the computer, my doc can pull them up.

Still waiting to hear from Stanford.  So I made and appointment for next Mon. at 8am to talk with Dr. C, I will check Friday morning to see if he has heard from Stanford, and if not, might bump the appointment.

Monday, August 22, 2011

sick people don't follow schedules

I just checked my voicemail, because I live in the basement and sometimes my calls and texts don't come in, and my ultrasound got bumped by some sick guy already in the hospital.  How rude and insensitive can sick people be? right....  Anyway, the receptionist happily rescheduled me for tomorrow at 10 with a check in at 9:30.  So if you were on the edge of your seat to see my thyroid in ULTRAsound, you will just have to wait.  In the meantime I will find the sick guy's room number so you can harass him.
About the only hospital I haven't been "squeezed in" and probably bumped someone else was Mammoth, and that is because there was no one else there to bump.  If you really want service when you are sick or injured, find an empty hospital.

Sunday, August 21, 2011

Info Update

I will work on filling in the background in a bit, but want to go for a run before bed so just a quick note on what is coming up.  I have a ultrasound of my thyroid, it has a small mass on the side and was mildly lit up on the PET scan so the doc wanted to cross a few things of the list if we could.

As far as treatment,  we are planning on a fairly standard treatment of rituximab 4 weeks, 375mg/m2,  one infusion per week.  We will start with that as soon as we hear back from Stanford to see if they want to lab rat me.  Considering there are only 400 NLPHL diagnosis in the US yearly, they just might.

The first post

Yea! my first blog post.  Hopefully this will go a little better than my journalling.  This blog is for two things, primarily to put up information about my treatment for nodular lymphocyte predominant Hodgkin lymphoma (NLPHL) is going, and secondarily, to vent a little bit where others might comment on it.  As far as the info part, I don't anticipate any problems.

As far as the venting part, I have been around this track, both the cancer track and the spiritual track, a few times.  Part of the venting process it to be able to hear, or in this case see, my own words so that I can cognitively manage the emotions and information better.  Please keep that in mind, and if you haven't been here, don't tell me how it is or what I should be feeling.  I do journal about death quite a bit, it has been an existential and spiritual concern of mine since I was a teenager.  I do know a fair bit about it both experientially as well as theoretically.  I have worked with hospice for a year and a half and at the cancer center for a year, it is something I deal with on a regular basis.  I am open and raw and it may appear "dark"; if it makes you too uncomfortable, you are free to stop reading and move on to the next informational post. Because I can talk about death, doesn't make me suicidal, I interact with professionals on a regular basis, and they think I am rather healthy.  Also I am not "losing my Christianity," I don't need to be saved, I've been on the North Face of God before and it only made me stronger and opened my mind to how awesome God is.

On the issue of spelling.  The English language is a mess and doesn't even follow its own rules.  So...if you know what the 'right' spelling is, then you know what the word is, that means my communication was effective, and frankly, that is what I care about.  I can proof and grade writing, I did it well as a TA, but I'm not getting paid to do it here and neither are you.

Wow, I sound pretty aweful here.  Really, I am not that uptight and snarky, I just don't need anymore frustration at this moment so I thought I would be proactive with a boundary or two.  So if you are up  to it, read on.