Follow up

I had my one month follow up yesterday.  It is hard to believe it has been a month already, and I nearly forgot the address for this blog.

There are some parts of treatment that are more comfortable than after its over.  During treatment there is a schedule and a regularity, however shitty it may be.  But at least there is a fairly clear expectation and something to do.  I think one of the hardest parts of being a cancer survivor is that there is not necessarily anything do do about it.  I don't know if that makes any sense to you.  It isn't that there aren't things you can do, really there are so many things one could get obsessive about it.  Depending on who you believe, cancer may be caused by everything from the bug spray on produce to the electromagnetic radiation that is collected and pooled underneath you by your mattress and box spring.  Everything from a little charred meat to half the stuff in a bottle of lotion might be on someone's list.  Just trying to figure out what should actually be avoided and what should be supplemented is maddening.  But that isn't really what I am getting at.

The best word I can come up with for the feeling, and it is more of a metaphor than definition by any means, is abyss.  You know that scene in Indiana Jones and the Holy Grail where he comes to the end of the tunnel and there is that huge canyon.  Imagine that without being able to see the other side.  I suppose in clinical terms it is what we talk about as "finding your new normal".  Lance talks about several months after he finished treatment and started to feel well again, he just didn't know what to do with himself.  I wonder if his drive may have just been to find or rather make meaning.  Not of the cancer specifically, though he does allude to that conclusion as well, but to make meaning of life.  I am not sure if it is to deny the abyss or just to that a meaningful life somehow becomes more necessary.  The other thing is that he and some many other cancer survivors had a life or something to get back to, and that becomes a vehicle to meet the rest of the world.

I have been a bit more withdrawn I guess recently.  I don't think it is all about the cancer, because other things are weighing on my mind and taking up my time as well.  It is not like I have been anti-social, I have just stayed busy with housemates new work friends, and stayed here.  In someways I have always been living parts of the life that I thought made sense to everyone else, because I don't really know how to live a life that makes sense to me.  It is as though I am so weighed down by all of the things I think I should have or need, kind of like David going out to battle Goliath in Saul's armor, that I know if step into the abyss I will drop like a stone.  If I could really let it all go I would soar on wings I never knew I had.

My life, my understanding is so not material; enigmatic, esoteric, abstract. In my application to grad school, I described it as the difference between building a wall with bricks and building with random stones.  It seems like all the directions are for brick walls, "just do it like this".  There are different patterns you can lay bricks in, there are some artistic things you can do, but still the brick is a know quantity.  I don't seem to have any of those bricks in my life, I have a bunch of stones, and I feel like I am have been trying to end up with a brick wall.  I know how to build with stones, but what I haven't figured out is how to make my stone wall fit into a brick world.

4th one down

Good news today.  The results of the pathology of the needle biopsy came back negative for malignancy.  That is quite a relief.

Then I had my last infusion for this set of treatments.  First I had a meeting with Dr. C that went really well.  I had taken the time to organize the information that I had from several studies using rituximab, and write out a bunch of questions, rule outs, and thoughts about how I might want my treatment to continue.  As I asked questions and he looked at my notes, we really came to the same conclusion.  Because rituximab doesn't tend to show reduction in it's efficacy with multiple treatments, we can use it in a maintenance program.  So we made another appointment for a month from now to see how things are going, and we will monitor for symptoms  closely.  In six months we will do another 4X treatment of rituximab as a maintenance dose.
There is always targeted radiation, and toxic chemo regemins if things get worse not better, and there are newer monoclonal antibody drugs coming out as well. So physically, this one is looking pretty easy.

Cancer is just one more challenge of life

...and a big one.  Some how I didn't get in the right line when the LIFE manuals were being handed out.  It seems to me a lot of people have things more figured out than I do.  Oh well, one day at a time, right?

So my treatment yesterday went great.  I had the company of one of my housemates and my cousin for a couple of hours.  Ran the rituximab in at full speed with no problems.  No side effects afterward other than the groggy from the benedryl.

So now that I am getting near the end of treatment, I have to start getting back to the rest of life, adjusting to whatever my new normal is going to be as a 2x cancer survivor.  The jumble of things I left behind makes it hard to decide what to prioritize.  I had a job interview for a part time position that will be really good experience, but not many hours, and another opportunity, so I guess I will have to paste things together and make it work.

I think I am to the point of just rambling now.  So I should probably just end this post.

I do want to say a big thank you to all of you who have called and checked in and been generally supportive through all of this.  It means a lot to me.

Vicarious loss

I received some sad news today, more about sad for someone else, not me, but when that someone else is a wonderful, supportive, teacher and friend, I can't help but feel the loss some how myself.

Cindee is a wonderful, deep, intelligent, and most of all loving individual who has been my teacher, guide, and  friend since meeting her 2 years ago.  We have had marvelous discussions about spiritual development, theology and how psychology/clinical social work interacts with the divine and humanity.  Her discussions and class projects have helped me to know myself better, and embrace the goodness in myself and other.  She has given me the opportunity to grow as a person, a clinician, and a teacher, and for that I am eternally grateful.

Through all of that Cindee has become my friend, and enthusiastically has supported me, distracting me with conversation while I get my infusions at the cancer center.

Tomorrow I will miss her though the loss I feel will be much more than her physical presence.  Last night I heard the news that her husband Neil was in a traumatic car accident, and today I heard that he died Monday night.  I went on with my day, I had a patient to spend the afternoon with.   Sometimes the patient naps quite a bit and I had some quiet time.  Grief washed over me contemplating my friends loss and it was only the professionalism I have learned over the last couple of years that kept me from breaking down and weeping at that moment, I took in a deep breath and allowed the feeling to wash over me for a moment and blinked away the tears starting in my eyes.

When I left the home I called another new and dear friend, Barbara at the cancer center, who graciously agreed to change her plans and talk with me about Neil's death.  On arriving at the cancer center, we hugged, we shared the emotions and talked through the spiritual implications, talked about the weight of working in a field that is regularly faced with the disappointment of death.  We talked about what makes a for a good death, and shared experiences.  We talked about self care.  I have been blessed to be well supported with mentors and friends.

I came home and walked the house mate's dog, then returned home to indulge in some fruit and dark chocolate.

My mind is still chewing on things, my heart is aching for my friend, though only a fraction of the pain I am sure she feels.

Cindee,  I hope you and your boys are supported in the arms of family and friends, and in the depths of your grief I hope you experience the fullness of the peace that transcends our understanding and are embraced in the loving heart of the divine.

Poke, poke, poke

After being disappointed by the denial of a fine needle biopsy with the lymph node, my dream was finally realized today with a needle biopsy of the thyroid node.  You see I have a amazing collection of procedures, many that are no longer used, so adding another one was quite a pleasure. Though not completely unpleasant, the procedure was really mostly painless, and I only have a little discomfort left from the swelling.  It was nothing compared with a lymphangeogram of oldeI will get the results back as early as the end of the week, but most likely early next week.  So stay tuned.....


For those faint of heart and squeemish, this is probably as far as you will want to read.  I will describe the procedure in more detail following for those that might be interested in what it is like to have one.

First of all, an intern, which is only fair for how much interning I have done, took some snapshots of the mass just to make sure it hadn't changed significantly from the last time.  The node was located, everything was reviewed by the imaging technician and the radiologist was called in.  I signed a consent and away we went.  The radiologist and the technician relocated the node one more time and marked the skin where they wanted to penetrate the skin.  Then the tech wiped antiseptics all over my neck and her equipment as the intern laid out supplies and the radiologist readied himself.  Then a quick poke and little burn with some anesthetic.  A minute later he was back saying, "tell me if this hurts."  The technician brought up the ultrasound so he could see exactly where he was going, there was a little pressure pain as he pushed the needle into the tumor a half dozen times before pulling it out.  Apparently they could see the line the needle made.  The did the same with two more needles getting different parts of the tumor.  The doc seemed impressed that I didn't bleed much.  They wiped the gel off and put a clear bandage across my neck and sent me on my way.  Compared to other things, I am a pretty big fan of this procedure.  Frankly, I would rather have a needle biopsy than a urinary catheter any day.  Another one for the scrap book.

Information treatment number 2

Today was treatment number two and it went off without a hitch.  Because I had a slight reaction last week, they used a slower rate, no reaction this time, so didn't need the extra benedryl.  I am just a little sleepy, but not too bad today.  I will take another Tylonol so I will have less acheies this evening. I may have a part time job opportunity so I may change the day of the week.  We will see, and I will keep you up to date.

My professor visited with me again and we had a marvelous conversation that bridged life and theories.  It is always such a pleasure to have those conversations.  I can't think of a better way to pass the time in the chemo chair.

Treatment update

I ended up roadtripping to Longview and PDX for a whirlwind trip mostly to do a favor for a friend.  I turned out to be a really fun and rewarding trip.

We got an unexpected invitation to stay in PDX Monday night and visit, so I didn't get back in time to do the needle biopsy.  It has been rescheduled for 8am next Tuesday morning.

Tomorrow is rituximab treatment number 2.  Check in at 8:30.

Treatment update

After the infusion on Wednesday I had a few cold/flue like symptoms that evening, but went to bet early, which was pretty easy with that much benedryl in my system, and got about 10 hours of sleep.  Physically I have been feeling fine the rest of the week and into the weekend.

So next week we have the needle biopsy of the thyroid on Tuesday morning and then the regularly scheduled infusion on Wed. morning.

A little distance and the new normal no information...just musing

Looking back over the last few days,  seeing that I haven't made a post since Wednesday just makes me think a little.  I guess we all need a little bit of distance from our difficulties from time to time.  Having both experienced and studied trauma and grief that is one thing I am certain of.  In grief work they call it "portioning."  It is something children do naturally but many of us adults may have developed glitches or defenses that stop this mechanism from working.  Still,  I bet you all can think of a difficult scenario that you faced, and some time in that work, you reached a limit and just had to set it aside for a while and come back to it.  Often when you come back to it, you may have had a new perspective on the problem or at least some renewed energy to face the problem.

With the blog, I think part of it has to do with with acceptance, or what lack of acceptance I am still dealing with, as well as portioning and giving myself a little break from directly thinking about the cancer.  Though it has similarities to denial and one might conceptualize a spectrum, it isn't contradictory to the event, but more like a side track.  When functioning completely healthy, it is like a pitstop in a race, a necessary reprieve to refuel and perform maintenance.  I can identify both healthy and unhealthy elements in my past few days.  I have habits of avoidance in my coping tool bag that sometime don't work well for me.  In this situation, my plan of action is already in place and is not likely to change significantly in the next 4 weeks.  So this one really can go on the back burner and allow me to catch my breath and focus on other things for a day or two, i.e. healthy coping.

The more unhealthy part would be avoidance of communication to reduce the sense of reality.  As I posted before in "Tomorrow..." there are somethings that tend to make situations hit home and feel more palpably real for each of us.  They may be common or distinct to any individual or situation.  For me, and from what I understand generally common, it the fact that writing about something and especially having others read it, tends to bring it from thought in my head, feelings, worries, to something much more real.  So, avoiding communication about something can be a very real denial defense.  It come down to "I don't want to tell you because I don't want to believe it myself."  Though I found other things to do instead of writing in this blog, I was still putting myself in and allowing social situations, and telling people about my experience.

With traumatic situations, as we accept them and they become real in this way, they change who we are.  The nature v. nurture or genetics v. experience debate is well fought, from metaanalysis it looks as though somewhere between 65-80 percent of what we might call our personality or conscious comes from genetics.  That is why we have solid examples of identical twins raised in different cultures with identical mannerisms.  Experience shapes the remaining part of us, and as we develop maturity and awareness, our intention can shape us as well.  Such a dramatic event such as cancer, the death of a close loved one, losing a job unexpectedly, the list goes on..., can significantly change a person.  Events before the age of 25 tend to have an even greater impact because they can have the added effect of developmental interruption.

The real on the other side of the event is never the same as the real before, and this change, especially when so abrupt, is what we resist with denial.  We never really get over it or go back to the way things were, because things aren't the way they were.  I love the quote from Oliver Wendell Holmes, "The mind, once expanded to the dimensions of larger ideas, never returns to it's original size."  I believe this is true for traumatic experience as well, really for any significant experience.  For someone who grew up in the plains of south Dakota, it may be as simple as trekking to the coast and seeing the expanse of the ocean.  Suddenly the world is more expansive and will never be a small again.

I am a cancer survivor and I could sooner forget the ocean is there.  I have experienced cancer from many sides and vantage points, it is woven into the fabric of my being.  Even when I was cancer free for 22 years, it was still apart of my daily life.  From seeing and feeling the scars, to taking pills, even my body can't just get over it.  But then is life really just about "getting over" the tough times and enjoying the good times?  What if we can find joy in the tough times just as some enjoy the resistance of a workout?  What if developing spiritually isn't about living up to an external structure, but rather about being open to the maturation and change that occurs with the experience of life?

In the business, one phrase we use for the whole experience is "new normal" though the sentiment isn't really that different than "getting over" or "getting past" something, it also acknowledges the fact that this event is significant enough to catalyze real change in our being.  Though the essential components are still the same, we may be as different on the other side as a recycled pop bottle when it becomes fleece fabric.  Material makeup is still the same, but the shape, the feel, the texture, even the purpose may be very different.  My belief is, that even though we don't want these things, and I don't believe God purposes us to experience them, the more fully we can accept them and embrace what our new normal might be, the more we develop as fellow humans, as spiritual beings, and the closer we grow to becoming who we created to be.  If the pop bottle really knew how awesome fleece was, would he really want to be a pop bottle any more anyway?

Having shared the end of this life with many people and their families, and sharing the experiences of colleagues and friends, I have seen the difference between people who are still fighting the resistance and those that understand to some extent, the new normal.  Acceptance doesn't remove the pain, the difficulty of the unfairness of a situation, but it does put those things in a more useful perspective.  I may not be able to swim against the current, but I can use the eddies and flow to get where I need to go.  I hope someday, when I am on my death bed, that along the way I will have learned to embrace the new normal with grace.

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.

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.

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.

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/m² " 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.

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 ;-)

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.

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.

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.