A Silver Lining

Well I just got off the phone with my surgeon Dr. Byrd, and we have some good news.  The PT scan only shows cancer in the seroma I have on my neck, which means we have a chance that it is still contained.  Of course this scan only picks up larger chunks of cancer (say a grain or rice or bigger) and doesn't show very small and even microscopic cancerous cells that could be moving through my body.  So while we know that I don't have any other large concentrations of cancer beyond the cells in my seroma, this is far from the all clear.

It does mean that further surgery is a good idea, and we aren't limited to immunotherapy.  As soon as possible I'll be under the able hands of Dr. Byrd and he'll perform a different type of surgery than my previous procedure.  This time he'll take out not only the new tumor but also a larger number of lymph nodes in my neck (maybe all on my right side?), which will all be submitted for a biopsy.  So after the surgery, I'll be waiting again for more results of more lab results...but we'll take it.

While you never like to hear your cancer has spread from the original tumor to a new tumor, this is the best possible news we could have heard in terms of results of the PT scan.  The surgery will be longer and more invasive than the last one and I'll have to stay overnight at the UW, but these are trivial inconveniences.

Thanks for all your support, prayers, words, etc.  I'll write again as I have things to share...

Ned

Waiting for the news...

This past Friday I found out that my cancer is back…or actually that it was never gone, but had gone undetected until now.  Needless to say, not good news at all…Going into my surgery in early May, I knew that 10-15% of people receive an “NED” signal (No Evidence of Disease) from the sentinel lymph node biopsy which ends up being false…and I am in that group. 

I found out by luck.  Right now I have a large bump on my neck which is basically a ball of fluid called seroma.  Seroma is common after a large variety of surgeries and will usually go away by itself after a few weeks.  Mine was bothersome so I went in to get it drained to speed up the process.  They weren’t able to drain it, but they did get some liquid out of it and since they had it, decided to test it as a matter of procedure.  It came back positive for cancer cells. 

In early July Jamie and I went to Alaska with all the kids to serve at a camp up there for kids and teens.  They asked me to give a talk the last night about my experience with cancer, and knowing that River would be listening in, I found some time to take him out for a walk.  We were sitting on a huge old growth log, looking across the water at a glacier perched halfway up an 8000’ mountain.  Before our eyes the glacier was slowly dying as a 1000’ foot waterfall of melt cascaded down the cliffs and towards the sea.  On that log I told him more details about my cancer…but was able to do so from the comfortable position that it was likely all off my body… 

Telling River the more recent news has been more disruptive for him.  The other kids are still too naïve to understand the implications, but they are not lost on River.  I can no longer go into a room where he is and not receive a long hug.  He was the one who stated the possibility that I might die.  It takes great courage for a kid not to be told that, but to realize and state it on his own.

Yesterday I had a PT scan to see if they can determine how far the cancer has spread.  I should know the preliminary results before the weekend, but the treatment plan will likely still be up in the air.  Right now there are some amazing immune system treatments in clinical trials that are taking people who were previously without hope and helping a great number of them.  It seems that we are on the verge of major breakthroughs in how melanoma and other cancers are treated, and I’m hopeful that if mine progresses slowly enough that I’ll be able to take advantage of them!  The current treatments don’t excite me too much, but I must admit that there is a lot more for me to learn about them.

As you can imagine the news has been disruptive for all of us.  You’re perhaps in that group for whom it is disruptive.  Cancer doesn’t happen to individuals, it happens to families, friends, co-workers, clients, etc.  In that sense, my disease is not my own but is being carried by many, and I'm very grateful that I'm not alone in this.

Hearing the news has made the last number of days quite the whirlwind.  On one hand, it has taken Jamie and I right back to the place where we are uber-present to each other and our kids, savoring each ray of sun, each meal with friends, each moment with each other.  It has also been very surreal.  To face the reality that I have cancer, that statistics say that most likely I will die from this cancer—these are strange waters.  It is difficult to have the gravity of the meaning fully land—to be emotionally attached to the implications.   I think that until I know more about the status of the disease and how far it has spread, I’m not going to let myself really go there all the way. 

I don’t feel any fear.  My biggest concern isn’t for myself but rather for Jamie and the kids.  If I die, she will be the one left to deal with the challenges I will leave.  I don't feel anger.  People live and die all the time and there is nothing that seems unfair that it is happening to me.

People have commented that they don’t know what to say, that they are at a loss for words.  Let me just say that this is OK, one needn’t say anything, simply being with me is enough.  Words of solidarity or words that describe how you’re feeling, like “I’m with you, you're not alone” or “I’m pulling for you,” or “my heart is breaking with you,” or even “I feel awkward and don’t know what to say.”  All of these are wonderful ways of being present to one’s own feelings and to me. 

What is unhelpful for me is being instructed on how I should be, think or feel.  Advice like, “Stay positive,” or “remember the power of positive thinking” are not welcome words.  That isn’t encouragement to me, it rather feels like someone is telling me how I need to react to make them feel more comfortable with the situation.  Personally, I’m comfortable being blue at times.  I feel comfortable facing reality head on without resorting into naïve optimism (or falling into pessimistic fatalism/depression).  The reality is that I could live 90 years, but most likely I’ll die in the next five.  I see no need to ignore either possibility, and will continue to hold both.  I’m sick of being told to stay positive.  I think it comes from people’s own fear of death and view that somehow death is the worst thing and must be avoided at all costs.  To me there are many things worse than death, including existing in denial or naiveté. 

This isn’t to say I’m not grateful for positive people.  My father-in-law Burch is the most positive person I’ve ever known, but he also can be serious and doesn’t dismiss the gravity of the situation.  He is hopeful, but doesn’t somehow disregard the likelihood of hope being obliterated.

 I guess I believe in being hopeful, but not necessarily positive.  The former feels like having a posture of a faithful openness and desire to be fully alive, but not demanding that it play out my way.  The later seems to come from a clinging to life on earth, holding on for dear life to each breath, and refusing to welcome or even consider the alternative.

I have more to say on all of this, but for now my kids are calling…  I will update when I can…

Premature Good News 5/20/13

 

The following was sent on 5/20/13 after having recieved an initial clear report.

Well I have some good news to share tonight: my cancer hasn’t spread to the lymphatic system. This is good news; it’s great news. It means that I’ll have to cancel my early retirement party, round the world tour and as my dad would say, I can resume buying green bananas. Of course, not all is clear sailing. While this is among the best possible results from the surgery, the tumor was bigger than they thought, it seems to have grown from the time I had my first appointment with my surgeon until I actually had my surgery and I’m definitely a stage IIB which confirms my original concerns.

Stage IIb has 5 year survival rates of around 70% and 10 year survival rates of 57%. So while I’m not stage IIIb and the cancer looks to have been fully cut off my body for now, with melanoma you’re never out of the woods. In fact it is one of the only types of cancer that not only has no cure, but also continues to have increasingly worse survival odds the farther out you go in time. With many/most cancers, once you’re cancer free for some period of time, say five years, you’re considered cured as the odds that it comes back become so small as to be insignificant. Not so with melanoma. The odds of it returning are greater in the first five years than in years 6-10, which are in turn greater than years 11-15, so the longer you go the more secure you can feel, but the risk is still there and most docs won’t ever declare you cured of melanoma like they would with most other types of cancer. As one doc put it, you will know you were cured of melanoma when you die from something else! That actually made me laugh when I read it…got to find humor where you can.

I haven’t yet actually talked to my surgeon about the pathology report yet, the nurse was just forwarding it to me to read for myself but she hadn’t had a chance to talk with Dr. Byrd about it. She didn’t want to give the all-clear sound because she couldn’t tell if the margins were large enough. I guess I’ll hear from her again tomorrow about this. Theoretically, if the margins are inadequate, I’ll have to go back for more surgery which would entail taking out more tissue followed by reconstructive surgery and skin grafts by a plastic surgery.

During the past surgery Dr. Byrd came out and told Jamie that he might have severed a nerve to my face which would have resulted in me with a limp/paralyzed cheek and mouth on one side. Jamie didn’t know until seeing me in the recovery room if this had indeed happened. The prospect of them digging around again and doing what Dr. Byrd had previously described as “major reconstructive surgery” doesn’t sound appealing. My bet is that I won’t need more surgery but I guess I won’t know for sure until tomorrow. If you don’t hear from me tomorrow about it, then assume I’m in the clear.

All in all I feel much better today. Regardless of the statistics, you have to plan on being alive. I don’t see how sitting around expecting the worst will help anything. However, I also don’t view this as over or behind me either...that seems to be simply a naïve assumption as well. I feel comfortable with the ambivalence, with living in the tension of perhaps having a long normal life or maybe dying in the next few years.

This seems to be a very healthy place to be, indeed I consider it a gift. Rather than being allowed to exist with the illusion that I’ll live forever, I get to have a constant reminder that our time here isn’t permanent and to hold it with open hands. Rather than being allowed to have a stranglehold on life and a fear of one day no longer having a pulse, I get to regularly have a gentle nudge to let go of being alive here and as a result be fully alive while I am here. As my spiritual father puts it, “die before you die”.

Surgery was a much bigger deal than I thought it would be. Going into it I was in a great state of mind and spirit and really felt quite strong. But since then this past week has seen a much larger range of emotions as I’ve also felt exhausted, frail, down, very stressed, and depressed. I think that it felt like as much letting go as one can do, as much as one can live with open hands and an open heart, we end up being taken to new depths where we are shown where we have even more work to do.

This past week was an experience in having to let go…ever more and yet again. Letting go is certainly not a onetime affair, it is a process as well as a posture, and it is never mastered no matter how long we practice it. I feel fortunate to again be taken to a place where I’m in over my head, a place of powerlessness where I must rely on love, grace, and on the support of all of you. I feel fortunate to be able to have been shown a few more places where I need to release my grasping for control, for power, for my ability to impose my will. Sensing one’s lostness is an important place on the journey of being deeply found, I think it always must predicate new depths of development almost by definition.

I did have some great moments in the last week as I got to spend some quality time with Burch delivering gravel to a rental property, fishing, and buying an old 1989 Ford F150 for projects on our new Greenwood home which we’re enjoying. Jamie has absolutely blown me away with her love, strength and energy through this whole thing and I have felt tremendously lucky to have her on my side. But I’ve also been short tempered with all the kids at times, had to apologize to Truss for over-reacting to his not being a full grown man already, and have felt stressed over insignificant things that shouldn’t bother me. Ah well, failing is part of life. My struggles to be the kind of father I wish to be will never be over.

Thanks for all your love, support, prayers, thoughts, calls, etc. I don’t know what the next steps are…(likely it will be monitoring and hoping that it doesn’t reappear) but whatever happens I know I’m not alone in this adventure and for that I’m very grateful.

The night before surgery 5/11/13

 

The following was an email sent on 5/11/13 the night before I had my original surgery...

 

Hey Friends!

I've felt like I've had no news to share about my cancer for some time, but finally I do have some information.

Tomorrow at 12:30 I'll check in at UW for surgery with Dr. Byrd, one of the top guys in the NW for this particular procedure. I'm having a sentinal lymph node biopsy in addition to the removal of the tumor. There is an infusion of radioactive isotopes into my neck before surgery and they'll use a geiger counter to find out where they travel to identify which lymph nodes to remove. Then the actual surgery will be from 3:00-4:30 and I should be home somewhere from 6:00 to 7:00.

The pathology report on the sample won't be back until the following Monday when I'll find out if I'm stage III or not. The docs I've spoken to have confirmed that I'm stage II and it appears that I'm II (B), but no one wants to say for sure until after the surgery and the resulting pathology report.

Likely, after the surgery I will have skin check ups every 90 days, but other than that no additional treatment. Based on what I've read about Melanoma and what the various docs I've spoken to have said, there really isn't much that they can do to treat it. Chemo, radiation, interferon, simply haven't been effective at all and there is nothing right now that looks to promising. Melanoma is an extremely personal cancer and you just hope that your particular version is one of the lessor dangerous varieties. It seems that luck has a huge role in survival rates, along with catching it early and getting it removed.

I've certainly felt a huge beneficiary of love, support, and prayer from many friends and even a number of strangers as well. Moving into our new home was stressful but we had the help of 30-40 people to shoulder the load which made me conclude that if anyone ever wants help moving, the best thing to do is announce that you have cancer... it works I promise. :)

There have been a lot of thoughts going through my mind. I don't really feel like dwelling on the negative but neither do I want to be stubbornly optimistic without acknowledging the downsides either-neither polarity seems appropriate. I guess I feel opmitistic and also realistic. I don't feel worried for myself, I feel at peace with whatever lies ahead for myself...it is my kids and Jamie that is the larger concern as my premature departure would have much larger impacts on them. I would like to write more on my thoughts and feelings down at some point but won't tonight... The other night in a prayer/reiki session with the mother of a friend of ours, the title "The Gift of Cancer" came to me. More on that later.

I believe that grace will be experienced from whatever transpires...and hoping that the surgery is successful tomorrow.

Thanks for your support and Happy Mother's day to all you mothers out there!