Living with Uncertainty

January 16th, 2011 § 2 comments

I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.

Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).

At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.

When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?

I realized that her parents have somehow come to terms with uncertainty, as we all must.

In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.

I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.

But just as Monica’s parents have learned to deal with that uncertainty, so must I.

Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.

I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.

The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.

I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing, living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.

October 27, 2010

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Fear of the Unknown

November 21st, 2010 § 0 comments

Sometimes I think this quality manifests itself in perceived negativity. Every so often, Clarke accuses me of focusing on the negative. I can’t say I think he’s wrong, I just think he’s wrong about what drives the concern.

It’s not that I focus on the negative. I just want to be prepared for whatever I am about to confront—good or bad. Of course, being prepared for bad things is harder. But I’m not even sure that I’m ready for good things to come my way.

Here it is in a nutshell: I have a terrible fear of being unprepared.

I never entered “suitcase parties.” These type of lotteries were popular in college. A business would purchase 2 round trip tickets and donate them to a sorority (or other organization) as part of a fund-raiser. You packed a suitcase and went to the drawing. If they chose your name, you and a guest would leave directly from the party to go to the airport.

The twist was, you had no idea where you would be going. You packed your suitcase and showed up without knowledge of whether you were headed to the Caribbean or Vermont. It could be anything, so you had to pack accordingly.

Sound fun? Not to me. Not appealing—at all. I never entered any of them.

I was always like this. But it really changed in December of 2006. The one time I wasn’t worried I got bitten on the ass. When I went back for my second mammogram I wasn’t concerned– in the least. There was no lump, I had just had a clear mammogram 18 months earlier, I was 37 years old, and I had had multiple benign lumps removed throughout my life. Every time I had needed a lump removed, I had worked myself into a tizzy of fear. And each time I had been proven wrong: the lumps were benign.

So to have vague density issues in one breast a few months after I stopped nursing my third child did not provoke worry in me at all.

So when they kept taking pictures I wasn’t worried. When they did the ultrasound I wasn’t worried. When the technician called in the radiologist to look at the ultrasound images I wasn’t worried. When they took me into a separate “discussion room” I still wasn’t worried.

But then the radiologist said words that scared me… hearing words I wasn’t prepared for was devastating.

It’s as if the words she said weren’t in my vocabulary. And therefore, when I heard what she was telling me… it’s probably cancer… I had no reflex in place to catch me while I fell. Here I was, unprepared in every way to digest the news.

So from then on I was fixated on preparing for what lay ahead. I didn’t want to be unprepared for the biopsy, for the double mastectomy, for the chemo. I walked through the world in a blur for that month while decisions were made. My body shut down and I was anxiety-laden. I knew I needed to get a plan. In getting a plan I would feel more powerful, more in control. And I did. Once my decisions were made about surgery and adjuvant therapy (chemo and long term hormone therapies), I think I became resigned. I needed to know what to expect. I needed to know what I might be able to do to take care of my family and how to carry on during what would likely be one of the toughest physical and emotional challenges of my life.

When my hair started to come out in clumps on the morning of my second round of chemo I went to the garage with my clippers and shaved my head. I needed to take control.

“What ifs” are my lifeblood. What if my cancer comes back? What if I die from this? What if I have such a poor quality of life that it’s not worth it anymore? What if I made a mistake being as aggressive as I have been?

The passage of time is helping me with these questions. I know you can’t control it all. And I don’t have the energy to worry all the time. But I also know that in being prepared I am self-soothing, rubbing my mental worry beads, trying to reassure myself that things will be okay.

I’m not sure I believe that yet. It’s a daily struggle. But I learned my lesson by dropping my guard. As a student of life, I failed once. I won’t do it again. Control what I can, be prepared for what I can’t. That’s as far as I am right now.

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Living with uncertainty

October 27th, 2010 § 0 comments

My last post (“These things are not wrapped in a pink ribbon”) was special. It was the hardest for me to post, the most personal. I said things in it I hadn’t shared with anyone; I described my feelings in my typical honest way. Readers loved it and embraced my effort. My heart soared.

I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.

Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).

At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.

When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?

I realized that her parents have somehow come to terms with uncertainty, as we all must.

In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.

I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.

But just as Monica’s parents have learned to deal with that uncertainty, so must I.

Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.

I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.

The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.

I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing,living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.

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Hoarders and Obsessed

August 27th, 2010 § 0 comments

My mother and I discuss psychology often. We’ve had a few conversations lately about the shows Hoarders and Obsessed (both appear on A&E, a second show Hoarders: Buried Alive airs on TLC). I used to like and watch both, but lately Hoarders has started to bore me. It seems like such a script in terms of the show; it’s like a Mad Libs where the only variables are name, sex, and age of the hoarder. The rest of the situations seems strikingly familiar each time.

The thing that frustrates us with the show Hoarders is that there’s no real therapy. There’s no discussion of treatment, no display of a change of thinking for the hoarder. Instead, over the course of 4-5 days (often it’s only 2 days) the hoarder is expected to suddenly “be ready to change” and start throwing things away with some prompting from a therapist and team of cleaners.

Why the therapists or family members seem surprised when initial enthusiasm wanes and the hoarders are reticent to part with their cherished belongings (often, literally, trash) is beyond me. Hoarding is a manifestation of a mental illness, and needs to be treated with counseling over a period of time. Like that of an addict, the pattern of behavior will not shift overnight, without education and a true desire to change.

Obsessed, on the other hand, shows the power of both a good therapist and a patient who is really ready to change. The process that they use takes about three months. With slow immersion into situations that are anxiety-provoking to the person with OCD, therapists use increasingly challenging situations to “untrain” the person. It may mean having an agoraphobic drive for a distance beyond his/her comfort zone or preventing a person with washing compulsions to wash his hands after doing a task that gets him dirty. Slowly building up to more traumatic and anxiety-provoking situations allows the patient to feel a sense of accomplishment and pride at making progress toward undoing these compulsions. At the end, the patient performs the task that they stated was their “dream goal” to achieve. This goal might be getting on an airplane to visit a relative or risking a dirty, germy home by inviting guests over for a party.

For me, a key takeaway from the show is that the body cannot stay in a period of highest anxiety for a long period of time. Even during all-out panic attacks that patients may have, if they can ride it out, focus on breathing and realize that they are okay, eventually their anxiety level will diminish. It may take minutes or hours, but eventually patients report that their self-rated anxiety levels revert to tolerable amounts. Individuals will see that they confronted their fear and remained safe. Therapists use cognitive behavioral therapy as their guide to teach patients that their particular fears are unfounded (if you don’t flip the light switch a certain number of times, no harm actually does come to your loved one, for example).

My point with this discussion is to say that not all OCD reality shows are the same. It’s unrealistic to expect a condition that’s been in place for years, perhaps decades, to be undone in a few days while cameras are watching. There’s a reason so many people relapse after going to rehab — it’s hard work. To me, showing the arc of recovery with cognitive behavioral therapy is a more realistic and appealing process, and ultimately a more beneficial one to the patient.

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