Maintenance

Tomorrow I start another round of rituximab as a maintenance dose.  In some ways it seems a little weird, in the end it just makes sense.  It isn't because we know it is still there, it is because we know that we don't really know, and in b-cell lymphoma when it is used as a follow up round or several maintenance rounds, the number of complete remissions following the second round is really good.  Luckily the insurance approved it, a little later than scheduled, but without a fight.  So tomorrow and the following 3 Fridays I will be back in the chair in the infusion room.

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.