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Friday, September 18, 2015

Welcome Back, Kotter

When I was a kid I absolutely loved this show. The dude with the "ooh ooh ooh!" raising his hand really tickled me for some reason. And who knew John Travolta's career was soon to skyrocket? Anyway, the idea for this post came about suddenly, and as you might be able to tell, one of my coping mechanisms is humor. For some reason I think of these non sequiturs, I guess to help with the shock and pain that sometimes re-occurs.

I don't mind telling you that this whole thing was a terrifying ordeal. I sometimes find the feelings of loss, sadness, anger, coming back. And they're not really welcome. They just barge in, triggered by things you might, or might not, expect. The good news is I've learned some ways to deal with it. The waves keep coming. And they will always and forever come. I know sometimes the waves will be big, but hopefully they will trend downward in amplitude.

I'm finding that some of the key triggers are the anniversaries (or days spanning) of the bad things that happened. The time I was admitted to the ER and the diagnoses. The kidney surgery and re-starting of dialysis. The stem cell transplant. I think these are all anticipated triggers of my (self-diagnosed) PTSD.

I found out this week, however, that other things can trigger the waves. These re-occurring feelings really do a number on my still-fragile sense of new normal. I found myself re-living the sense of losing control over things, fears for the future, etc. Probably all these things are normal, but it still happens, and there is no short-cutting the getting through it.

I'm still developing ways to cope. One way is to share these things w/ my wife. Another is what I'm doing right now: writing about it. For some reason, writing about these things helps me. It helps me compartmentalize, organize, deal with these feelings in a controlled fashion. I can't deal with these things all at once, it takes me (sometimes) days and weeks to sort it out. I mean to sort out the latest round of waves. I know more are coming, and they could be bigger or smaller; but they will also pass.

It's not easy dealing with these, and I hate that I have to be practiced at it. I find, though, that it is a skill, and it takes work to hone it. It doesn't make the badness go away, of course, but I need some way to deal with it.

I was sort of prepped for a re-living of these bad feelings by the passing of the anniversary of my kidney surgery (Sept 9). The final trigger this week was when I learned that a fellow that works at the same place as me was also diagnosed with MM. I work at a rather large place, and I don't know him, but word got to me about it. I initially wanted to reach out to him and his family (which I have), but in the background quickly all the old, bad feelings swamped me again. Reading his Caring Bridge journal reminded me of all we went through at the beginning.

In the beginning I felt very alone, and I prayed a lot. I mean a lot. For healing, and mostly for hope and strength for me and my family to deal with it. I still pray for that, but now I know and feel more assured about it. I wrote before that my faith is stronger now than it ever was, and allowing His Grace to come close makes a huge difference in my own life. It is a struggle sometimes, but I have to remind myself that I've let Him in, and I have to find Him again. Finding Him seems easier somehow, like He's just a lot closer all the time, sort of "on board" with me always, and not separate from me.

The weekend prior to this, while I was at church on a Saturday evening, I had the notion to find and read the parables about Jesus and the disciples in the boat. I didn't know why, but now after this week I do. I will leave it with this.

Matthew 8:23-27

23 Then he got into the boat and his disciples followed him. 24 Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. 25 The disciples went and woke him, saying, “Lord, save us! We’re going to drown!”

26 He replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm.

27 The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!”


Sunday, September 13, 2015

Time paradox

From Hitchiker's Guide to the Galaxy (Douglas Adams):

Zaphod:Yeah. Listen, I'm Zaphod Beeblebrox, my father was Zaphod Beeblebrox the Second, my grandfather Zaphod Beeblebrox the Third...
Zaphod:There was an accident with a contraceptive and a time machine. ...


While talking with a fellow cancer patient yesterday, the topic of "time paradox" came up. What does that mean? It has nothing to do with the quote above, but for some reason that popped into my mind.

I define it like this: The desire for time to pass between you and difficult times vs. the desire to not lose a minute more of your life.

Over this past 18 months, I have had times where I much desired for time to pass more quickly. I think we all have this from time to time, and it's usually because of something bad we'd rather forget or at least put some distance (time-wise) between us and it.

Times I wished time would pass away? Here are a few.

  • Hospital stays. Seemingly, nothing turns as slowly as the great Hospital Wheel. I saw the doctor once a day, but most of the time we were waiting on something. I obviously did not feel well. Plus, they do things to you in the hospital you'd rather not have done. I had two longish stays in hospitals in one year, one for 2 weeks, and one for 17 days. I just wanted to be away from there.

  • Surgery or other physical pain. I found myself enduring a lot physical pain over the last year or so. Those are days, hours, you want to disappear. I felt like I just wanted to get in my little space ship and jet away from that place, down the Cosmic Time Line. Pain killers are fine, but those times made me feel like I had to live hour to hour, just get to the next one. Then hours turn into days, days into weeks.

  • That day I joined the "C" club. This was an overwhelming feeling, almost like a bomb going off in your life. This is the one I fought the most against. I felt like I was trapped in a place not of my choosing, and it was unfair that I had to stay there. I look back on my previous writing, and best I can describe it was that my life was "re-organized in ruthless way."

Treatment (chemo) for the cancer is something I want to pass quicker; I'm on a 2-year course of "maintenance chemo". Thankfully, my cancer is "in remission", but who knows how long it will stay there? I want those two years gone, but on the other hand, I do not. Two years could be a significant part of what's left of my life; I don't want to miss it. Chemo steals days from me, and I want those days over. Chemo is the best chance for my long-term survival, though, to break out of this paradox. I treat it more like an investment. Investment requires giving up short-term gains for hope of a greater long-term gain.

I don't know how yet to balance these things. I feel like it's a major part of this burden. Trying to make it less of a paradox and more of a balancing act. Like walking that "ambivalence tightrope" I mentioned before.

In the end, there might be less paradox and ambivalence, but it required effort on my part to resolve them. Having walked to the edge, stared death in the face, and come back, it changed me. Permanently. I had to let my beliefs and feelings guide me back to what's really important. Did I love my family before this? Of course. I love them more now, somehow, because I have viscerally felt their preciousness.

"Don't ever give up". Every day is a gift, and don't you forget it. Cling tightly to what matters, and love it, because today's not coming again, and tomorrow's not promised. Ask me how I know.

Saturday, September 5, 2015

Let me help you help me help you

I wrote earlier about my falling away from my previous "normal" life. I am very independent, and being put into a position of needing help was beyond difficult. Like a lot of people, I was more comfortable helping others than receiving help.

When calamity like this strikes, a natural reaction is for a lot of people surrounding you to want to help. There were a lot of emotions mixed up in that for me. For one, accepting help meant that I had to accept that I in fact needed help. It also meant acknowledging that something really bad is happening to me and my family. There was a lot of denial, or refusal to believe, but eventually I had to accept it.

As a family, we are lucky in the sense that we have 1) strong extended family support; 2) strong faith community; 3) strong friends; and 4) strong neighbors. I kept the word "strong" with all those because it does take strength (and courage) on the part of others to be involved with you and to help. Being involved means taking the time from your own life and mustering the courage to face the ugliness life sometimes deals out.

At first I often found myself walking what I call the "ambivalence tightrope". One the one hand I wanted people to feel bad about what happened, too, to acknowledge it, cut me some slack, feel sorry for me, be awed by the fact I've been so torn up and fought my way back. On the other hand, I hated that feeling, hated that I even had that feeling. I did not want anyone to feel sorry for me, to just mind their own business, or just treat me like nothing bad had happened.

Help from Afar, Indifference from Nearby

Not everyone fits the bill, however, and at times I felt like some near me distanced themselves. It felt like they let me down. I don't know why this is, and I don't think I imagined it. I didn't choose to have this happen, but it felt like some people just didn't want anything to do with me afterwards. Or, they were seemingly indifferent about it. Like you're contagious, damaged goods or something. Get out the 10-foot poles. Leper alert. Wow, that's a bad car wreck, let's  speed away from that mess. And so on.

Maybe some people don't want to face the reality that bad things happen to good people, or they don't want to identify with you. Or, they just don't know how or what to do because the situation has become so awkward and upsetting. I may have behaved this same way myself, in the past, being on the other side of it, unaware I was even doing it. I'm not saying it's right or wrong, or that others have a duty to help. There is no duty, but I had expectations, and my expectations were not met.

On the other hand, we received help from people that I wouldn't have expected. Some people I didn't even know prior to this. I can't say what qualities they all had, except for a real empathy and a desire to act. Being friends or acquaintances prior to this had no bearing on it. We were so grateful to have these people rush in.

We received everything from help around the house to meals cooked and brought to us. My mom and siblings stayed with us for times, watching the kids, making sure the homework got done, etc. while we were at the hospital or at the doctor. Some people sent money, which seemed weird at first, but you don't think of all the extra gas, groceries, eating out, etc. you do in these times. Those who had been through similar experiences did think of these things, and this is how they helped. Others advised us on how to maneuver the maze and sometimes slow-as-molasses medical world.

In the end, allowing others to help also helps them. The shape this takes depends on the person, as I've found that every single relationship I have to someone is different. It's as unique as the person is. It was important to let them help, let them minister to me. When my life blew up, it hurt others nearby. I needed to help them help me, too.

I received more hours of help and hope than I can count from my pastor. He visited while I was in the hospital, out of the hospital, at the house. He really helped by providing key insights to kindle the hope I needed to get through. Now that the acute phase of this is over, he still visits, helping me find my way back into the world.

What Else Helped

  • Meal signup. Someone (our close neighbor) volunteered to organize a meal sign-up. This is a way a lot of people, neighbors, friends, church friends, can and will help you. She took care of it all, saying what kinds of things to bring, when to bring it, and (importantly) instructing not to discuss the situation with whoever was at home. Basically, leave it in cooler at the door, ring the bell, and take off. Not to be rude, but you try explaining the same thing 60 times a month to different people.

  • Trusted spokesperson. Our wonderful neighbor who did the meals also served as our spokesperson. She was the contact person for everyone outside the family. She would update everyone, protect our privacy; she was like a hawk circling around us, looking out for us.

  • Caring Bridge. My wife set up a Caring Bridge page not long after this all began. It was too difficult to talk, text with everyone that wanted to know what was going on. We only kept direct communication to our immediate family, and they would disseminate the information as needed. The Caring Bridge site gave us a way to keep everyone up to date all at once. It also helped control the message, reduce gossip and speculation. I did not want this plastered all over Facebook or Twitter, so we requested everyone honor that.

  • Volunteer to do something specific. Saying "what do you need?" in times of crisis is not always helpful. Doing specific things, and not even asking, helps more, like

    • I can take Johnny to hockey practice for you.

    • I'll mow the lawn tomorrow

    • I'll walk Suzie to the bus-stop in the morning / afternoon

    • Here's a basket of breakfast food and drink

  • Prayer. I found this difficult at times, because I didn't know what to pray for: healing, that this would go away, strength. Mostly I prayed for strength for myself, and for vigilance by my caring team (doctors and nurses). I sometimes prayed for my fellow patients. I do believe that He is an endless source of Grace and Hope, and to endure this, I needed them; I prayed a lot for strength and signs of Hope. I more wanted Him near me than I wanted results, if that makes sense. In the end my faith is stronger now than it was before.

  • Cards or notes. I received several cards from friends, and they helped lift spirits. The ones in which they took the time to write a note meant a lot to me.

  • Support group. My wife (caregiver) and I have begun attending a local cancer support group. I was reluctant at first because I didn't see myself as one who needed it, or could contribute. I'm glad I got over that, because I did need it, and I can contribute. Everyone's story is different, but many of the struggles are the same. I'd gotten some advise on outlook and dealing with it from my family. And they were right. But, hearing it from others going though it gives instant credence. It's helping a lot in terms of getting back to life.

  • Visits. Going through a stem cell transplant makes visitation tricky because of the immune system weakness. A lot of people, primarily family, wanted to visit, and that was good. Some people seem to want to lay eyes on you, see that you're OK, or whatever. It helped that they were here, but also it helped them, too.


Wednesday, September 2, 2015

I've fallen, but I can get up

Earlier I mentioned the sensation of falling down and down during the first few days in the hospital as the diagnoses came in. It felt like falling away from my past life and loss of control. As the diagnoses piled up, seemed like the hand-hold we'd found the previous day broke away.

When my life went sideways, I wanted it to stop. I didn't like it, and frankly it made me very angry at first. It also made me afraid. While at first I was also ashamed of that, I now see it as ok. I am the primary provider for my family, and I'm fiercely independent. Part of this mixed up emotion was the stripping away of the illusion of control.

The kidney stone diagnosis was not really that alarming. The following detection of a "mass" in my left kidney was a bigger blow, especially since at first we didn't know what it was. Based on its make-up, however, cancer (renal cell carcinoma) was suspected. Turns out that was true.

The final blow came on a fateful Wednesday morning when the "Multiple Myeloma" diagnosis came. This one was hard to take, not only because of the nature of MM, but also because my youngest son was with us at the time (out of school).

This was the point at which I crossed into that "C" club. It's obviously a club no-one wants to be in.

Recall that while all this was going on, I was also on hemodialysis and pheresis treatments simultaneously. The cancers were the cause of the problems, primarily with the MM being the Real Malady. However, the side effects, kidney failure, and massive amounts of "kappa light chains" proteins clogging my blood, needed to be cleaned up.

All of this gave a sensation of falling away. We found hand-holds each day, praying that this was as bad as it could get, but for a few days it just got worse and worse. Eventually the diagnoses stopped and we could focus on the carnage, the loss. We tried to define the new normal.

It would probably take a year to explain all the ins and outs of this, all the uncertainty I felt as a father, husband, son, brother; all the fear, anger, worry. The shock and disbelief as seemingly my life values were suddenly stripped away. I had the distinct feeling of being isolated, really isolated, unlike those moments of quiet solitude one might seek out. It's a sad and lonely place, somewhere I didn't want to be. I don't think it's natural for people to be or feel totally alone.

It was from this place, though, that the real changes began. Those changes in person and life perspective that can only be brought about by losing everything, or thinking that you're going to lose everything, really believing that. Yes, my body was ravaged and I had to endure a lot of unpleasant things; a single one of which I would never wish on anyone, but that's just biological processes and medical wizardry. Cancer is not just a physical battle, however. Cancer is mean and unfair and attacks a person on all fronts.

Here's where things get a little weird, or spiritual, or religious, whatever you want to call it. I don't hand out flowers at the airport, but I'm a believer. In God; Jesus Christ. It may be a surprise to some to know that about me because I don't always live up to it; I'm not in your face about it, maybe I'm a little too quiet about it. I'll talk to you frankly and openly about it, however. I wasn't always a believer, and it wasn't because of cancer I suddenly became one. My faith was kindled peacefully some years ago. It's only by this faith and his Grace I've made it through.

It was tough sledding at first. I started seeing myself as alone, just stripped down to nothing. I was connected through prayer to Him, however. It really was just Him and me in the early going, me praying for strength, healing; and at times wailing against the injustice of it all. I soon though began to see myself as connected to my family, my wife, kids, mom, dad, building my connections outward again. It may sound strange; of course I felt connected to them and loved them before. Now it was different, though. It really was one of those perspective altering experiences where my life long values were stripped away and now with great urgency those connections that matter most reveal themselves first.

Not long after, I began seeing and filling in more connections outward, many or all of them fanning out from Him or because of Him. Connections to all my family, and friends, and really out to a larger church community, including my friends' and family's churches.

I received (and still receive) so much help, relentless help, from my church pastor navigating these tough times. I see it now as fitting that the last church service I was well enough to attend the year of my illness was Easter sunrise. I returned again one year later at Easter, but with a new faith, rebuilt from the ground up, from the inside out.