I am often told in the gentlest of ways, how important it is for me to rest and take care of myself. And the people who tell me this are very loving and very correct.

However, there are reasons that it is hard for me to sleep as much as is necessary. I do it but I’m not sure if most people realize the consequences. Or to put exercise into my daily life. And to take time to eat well. I suspect that a good number of cancer patients who are taking care of themselves have a very different life than the “well” people who do not perhaps put as much time into self care as they might.

I didn’t sleep well for 18 months. And the two years prior to my cancer diagnosis consisted of five courses of stress for every meal. Although prior to cancer, I had pretty much slept well, the rest of my self care was lacking.

Now, at typical weeks goes as follows. Whereas,  a year ago used to be able to get up at 6:30 am to exercise, I am not yet able to do that again. The earliest I am able to get out of bed is 8:00 am and that is when I have morning patients or when I have an early healthcare appointment. If I have no scheduled morning obligations, it is very hard for me to get out of bed before 10:00 am and sometimes I am not up until after 11:00 am. This means that in a 24 hour day, I am often in bed more hours than I am out of it.

Six days a week, I go walking right after I get up. Usually it is for an hour but of late I have been extra stressed and I often walk for two hours. But even on days when I walk for an hour, it means that I don’t start the working part of my day until noon on most days of the week. If it is a day when it is my responsibility to cook dinner, that means I have about 5 1/2 hours to work and that includes showering, dressing, and putting on make-up if it is a clinic day for me. I have found that lately, if I don’t need to go into the office, I may skip showing all together in order to save time.The point of this is that due to my increased sleep needs as well as my need to exercise regularly, I have a compressed work day.

But wait, there’s more! I also have an above average number of healthcare appointments each week. I see my psychologist every other week, I still get acupuncture every three weeks, plus I have the normal oncology and every day person dentist visits, annual physicals, etc. Oh yeah, I am also a mom and need to bring my daughter to her healthcare visits. Next week, I have three of my own doctors’ appointments and one for my daughter. There’s no way I’m going to be able to pull this off. So I’m going to need to reschedule my appointments for the dentist as well as for acupuncture. I am keeping my psychologist appointment because I am dealing with a greater amount of stress these days and that is not a ball I want to drop.

And some how during that time I will be working, getting ready for a trip, and getting fittings for the charity fashion show. (Alas, I did not know that I would be wearing multiple outfits, each from a different store in the Greater Seattle area. And there are times I will want to have with my family and friends. And times when I am unable to do much of anything besides surfing on the Internet.

I know that my days of needing 12 hours of sleep a night will likely decrease. I am also hopeful that my healthcare appointment frequency will decrease. But I also know that they could all increase again if and when I have health problems again. It has been nearly two years since my initial diagnosis. I would say that I wish I had known how long of a haul this was going to be but frankly, knowing myself, it was better not to have known ahead of time.

Again, the fact that I need to take care of myself is correct. It is right for me to do what I am doing. But when you tell a cancer patient to “take care of herself”, I want you to know what you are asking her to do. And if you can find a way to magically make more time in the day, you will be her best friend forever.

I used to work in my garden a lot. Along with reading and cooking, it was one of my favorite hobbies. A garden is not so hard to maintain if I work on it a little bit at a time on a frequent basis. The garden was my space. I appreciated being outdoors, having my hands in the ground, and watching the birds, the bees, and the butterflies along with the changes of the seasons. And people appreciated the garden. I designed it organically. I started with a few plantings and then worked my way around them. I chose plants that were interesting and pretty. I chose plants that attract beneficial insects and birds.

 

Then I had all of those stupid surgeries. I got behind on every imaginable household task. And I got really tired. My yard got overwhelming. I’ve got tired of the jungle of weeds. I am not a super tidy person but I have more of a love of order than do my family members. Consequently, my house is typically about 50 times messier than I would like it to be. I spend a lot of time picking up after other people and I do a pretty bad job of it because there’s so much picking up, putting away, and cleaning to do. My home office is in need of a clutter coach. Who am I kidding? My whole house is in need of a clutter coach.

A few weeks ago, I made a bold move. It was also expensive. I hired landscapers to weed my front yard. They weeded, pruned, deadheaded, and mulched. And it was like I could breathe again. Weeds started to pop up again in the last week. I was able to go out and take care of them because it wasn’t an overwhelming task. I spent a couple of hours in the garden today, including time chatting with neighbors, which is also an invaluable part of the gardening experience. It was an amazingly beautiful day and I had a wonderful time. This was the first time I’ve worked like this in my yard in nearly a year. It was like a resuscitation.

I hope that I will be able to continue working in the yard on a regular basis because it has been such a great love of mine. I can see how I feel tomorrow, and the next day, and the next. In the mean time, I hope you enjoy my spring garden!

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I dreamed last night that I packing up to leave my office at the University of Washington because I’d run out of grant money. That actually happened in 2007. I thought I was all packed and then found a bunch of cabinets full of things yet to be packed. I realized I had a plane to catch to go home to Seattle. I walked around the university campus and it was actually the campus of Indiana University. The University of Washington is in Seattle. Indiana University is in, you know, Indiana.

I walked around campus trying to get someone to help my move my remaining boxes before I was due to get to the airport. A couple of men offered to help me. I finally realized that I could not be in Seattle and Indiana at the same time. And how was I going to transport all of my office stuff back home and still make my plane. And then for some reason, the men and I walked into a building. The building exploded right as we walked up to the doorway, but some how we survived. Then I woke up.

In the dream, my assumptions about where I was, what I was doing, and how I was going to do whatever it was I was doing, exploded right in front of me. We live our lives according to assumptions. Those assumptions can be challenged in gentle but persistent ways. They can also be thrown on their head.

Until May 24, 2012, I assumed that I would not get cancer in my 40′s. I assumed as a woman from a long line of long lived women on my mother’s side that I would live a long life. I assumed that I would be alive long enough to raise my daughter and to retire in my 60′s or 70′s. (Note to hubby: Early 70′s, tops, and working part time.)

Then the assumption of health that supported all of my future life plans crumbled. I have worked to pick up the pieces, make new pieces, and reworked the foundational assumptions I have about my life. And all along, I have worked to be true to the person that I was before and not define myself only by fear and insecurity.

The early part of this process focused on physical reconstruction of pieces. Surgeons have subtracted and added in many iterations. When I was home following my mastectomy in August 2012, I was looking on Ebay for clothes. I had lost a considerable amount of weight and I do nearly all of my clothes shopping online. I came across this photo.

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The mannequin pieces do not fit together and the arms are placed on the wrong sides of the body. It makes the whole figure off. The large hands in particular reminded me of how drag performers can look. They have many feminine physical characteristics through make-up, body padding, binding, falsies, and good acting skills. But there are almost always clues. Things that don’t look quite right. Some drag performers take advantage of this to comedic effect. Grady West, who developed the character, Dina Martina, is a 50 something year old man with a pot belly and hairy back. He wears over the top feminine glitzy costumes that are several sizes too small and his dresses don’t zip up all of the way. Dina’s make-up makes Tammy Faye Baker look like a model for Pond’s cleansing cream. He uses the mismatched puzzle pieces to great advantage and his shows are hilarious.

Other drag performers aspire for “realness”, to be able to pass as a real woman. I was introduced to this concept when I saw the excellent documentary, Paris is Burning, which was filmed during the mid- to late-80′s in New York City. It was about the “Drag Ball Culture” in the city. (Remember “voguing”? It started there, not with Madonna.) I was fascinated by the communities that were built by the men in this culture. Most of them had been rejected by their families and by society, as a whole. But they made their own families with “drag mothers” and familial living situations. I thought the way that the men found a way to pick up the pieces and make news pieces to construct their own families was inspiring.

I know that there was a short time after my mastectomy when I was worried about “passing” for a real woman. But mostly, I have been trying to reconstruct the pieces of my mental life and to dance to the changing rhythm of my daily life.

Life has pieces that change. Life has pieces that need to be replaced. Life has pieces that are lost and cannot be replaced. But my life is whole and I belong here.

I am good at seeing patterns in my behavior, better than I was in the past when my cancer experience was new. I think I am leaning into an anxiety and grief spiral. I have been very stressed about situations that are mostly out of my control. My pattern is (1) define a current or anticipated problem, (2) develop a plan, (3) put the plan in place, (4) fall into a pit of varying depth and circumference, and (5) cope like crazy until I regain my footing.

Right now I feel myself transitioning from step 3 to step 4. But meanwhile, I am dealing with another problem. Time I spent taking care of the highest priority problem meant that I got behind in my work. Now I am shuffling around to put a plan in place for that.

Additionally, I agreed to participate in a breast cancer charity function. The proceeds go to patient assistance fund at Swedish Cancer Institute, which provides very practical assistance like emergency rent money, meals, and transportation to and from medical appointments to breast cancer patients. This is a very worthwhile cause that makes a real difference in patients’ lives, not to mention the fact that I am very grateful for the treatment I have received at the institute. Last year, this event raised $120,000.

I do have mixed feelings about the event itself, which is a fashion show. You know how I love wearing pretty clothes but also have major misgivings about the fashion industry. I also suspect that I’m going to have to wear at least a little something pink at some time but based on last year’s video, I see that pink is present but not omnipresent. The models are all normal looking people. The women are all breast cancer patients. The men are friends and family. Everyone looked like they were having silly fun. And the fun was balanced out by speakers talking about the real negative impact of cancer on patients and their families.

The rational part of me thinks, “Why throw out the pink baby with the bathwater?”  The good outweighs the bad of participation. I have wanted to get involved in a small cancer related charity and this is a chance for me to see if this is an organization with which I would like to continue to develop a relationship. There are lots of things they do and a variety of events that are put on over the year.

Did I say, I was starting to spin? I spun at least a full revolution on my walk in the woods this morning. I’ve started having abandonment fears. I have been stressed and relying on my friends to give ear to my distress. This morning I was worried about being a burden and losing my friends because the sum of the negative parts of my life are really scary. I know this is irrational but I also know that my behavior can still be motivated by irrational fear even when I am aware of it. This is when I start flailing and apologizing to my friends. I try to solicit their support in an overly sparing manner.

And the fashion show? I was worried about that, too. I was afraid that I would lose some of you out there because you would believe that I was “pimping myself out” or that I have been pink washed. Then I thought, “I just won’t say anything about it.” I wouldn’t be able to get the word out about the event so that the charity would make more money and more patients would get real, every day assistance. How silly and counterproductive. In my efforts to reduce the attention to the aspect of participation that I don’t like or am unsure about, I would contribute less to the part to which I feel clearly committed. And the biggest flaw in my “avoid it” plan was the fact that the only person I need to convince about whether this is right for me or not is myself.

When I was a little girl, I used to spin in circles until I got dizzy and fell to the kitchen floor. I would get up and do it over again and again. I remember how the pattern on our linoleum floor used to bind together into a blur. It was mesmerizing and fun.

I don’t spin for fun any more. But I still know how to get up after I’m done.

I met with a delightful teen boy recently for a reassessment of his ADHD.He was in nearly perpetual motion, fidgeting, tapping his fingers on the arm rest, tapping his toes, and switching from one seat to another every 5-10 minutes or so. Although friendly and polite otherwise, he also interrupted frequently and I could tell that if I laughed too much at his jokes, I might lose him in a fit of giggles, non sequiturs, and additional jokes. It was hard because he was really funny!  Although delightful, the behaviors I described are signs of hyperactivity and impulsivity. He also had a long history of difficulties with inattention.

His symptoms were first noted when he was in kindergarten and he was subsequently diagnosed with ADHD in grade 3. There are three subtypes of ADHD: Combined presentation (significant inattention and hyperactivity/impulsivity), predominantly inattentive presentation (significant inattention but not significant hyperactivity/impulsivity) and predominantly hyperactive/impulsive presentation (the reverse pattern of predominantly inattentive).

There was no report available of his ADHD diagnosis. I saw him practically rolling around my office so I said with a slight wink in my voice, “I see that you were probably diagnosed with combined type ADHD?” His mother, a physician, replied with some surprise but non-defensively, “No, purely inattentive type.”

I said, “I see that your 11 year-old son also has ADHD. What is he like?” Not surprising to me, younger brother is a major fireball. And as the frame of reference, older brother is comparatively sedate. Also, older brother does not have a history of behavior problems. In many people’s mind, ADHD is synonymous with behavior problems like arguing, fighting, and having anger control problems. The truth is that a large proportion of children with ADHD do have behavior problems but what’s little known is that behavior problems are not part of the diagnostic criteria for ADHD.

ADHD is really complicated. It’s presentation varies widely from person to person as well as across development. People with ADHD display a different pattern of neuroanatomy as well as neorophysiology. When I am explaining ADHD to a science-minded teen, this is the time when I geek out and start drawing diagrams of presynaptic and postsynaptic neurons as well as relative differences in dopamine re-uptake in people with ADHD verses those without ADHD. I will spare you this part of the presentation. If ADHD, based on our current understanding, could be boiled down to one problem, it would be difficulty attending and persisting on tasks that are not interesting and/or fun.

ADHD also does not define a person. They have other strengths, weaknesses, skills, aptitudes, and personality attributes. Treatment response also varies from person to person. So, people with ADHD are not one person. They are all individuals. So why do I often hear people argue that someone definitely has or doesn’t have ADHD based on a limited frame of reference. And I’m not just talking about people with a vested interest in the diagnosis. I include casual observers, some extremely sophisticated, but who treat diagnosis and treatment like common knowledge. These folks also love to give advice and unsolicited opinions to the parents of my patients, to my patients, or to me if we’ve just met and I’ve answered the question about what I do for a living.

Does this sound familiar to any of you out there? It’s kind of like how everyone is becoming an expert on breast cancer. How they might tell you what kind of treatment you should get because they know someone who had breast cancer and it is assumed that all breast cancer treatment is equal. There may also be people who assume that they can predict another person’s breast cancer prognosis. There are assumptions about how people with cancer should look, act, or feel.

I know there are a lot of breast cancer patients who feel blamed for their disease. It’s not that I have not felt empathy for people with that view, it’s just that it didn’t resound for me because of my frame of reference. In my professional life, I work with children who are often blamed for their disease, even children who are in preschool. As a cancer patient, I had a much different experience. No one told me, “You need to stop having cancer right this minute!”

So the sense of being blamed did not fit into my immediate frame of reference after being diagnosed with breast cancer. But I am learning from all of you, from our shared and unique experiences. I am very thankful to be part of a community that “get’s it”. A community where it is okay for me to reveal faults and fears without being seen as wrong in some way. I appreciate your adopting a very wide frame of reference, one that accommodates personal choice, individuality, and the fact that breast cancers impact us but do not define us.

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As I continue to heal from the stress, the meds, the surgeries, and all the rest, I am taking on more and more of my responsibilities. My life is getting to be less about me and more about work, marriage, and parenting. Not to worry, friends I am still working hard to take care of myself because I know that moms in particular can be kind of bad at that.

The public part of my blog, however, is going to be more about me. Last weekend, a member of my family was verbally attacked in the comments section of an old post, a post that I HAD WRITTEN. My writing has never been about hurting anybody, least of which about exposing my family to abuse.

Consequently, some of my posts will be password protected. I have contacted a number of you privately, through other social media or email with password information. But I don’t know how to contact all of you who have been regular and respectful readers, leaving thoughtful comments over the years. I hope you will understand.

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I was in line at my bank last weekend, waiting to make a deposit. There was a customer talking to one of the tellers:

Teller (politely): I’m sorry ma’am, we now require picture ID to make cash deposits. May I see your driver’s license.

Customer (annoyed): I never had to do that before. I don’t want to do this every time. Can’t you just use visual recognition?

T: I’m sorry, ma’am but I don’t know you.

C: But you gave me two piggy banks last week!

T: I’m so sorry. I’m new and I have not learned everyone’s face yet.

C: How long have you worked here?

T: I started at this branch in December, ma’am.

C: By my recollection, you’ve worked here five months! Did you work here intermittently?

T: Yes, ma’am.

The customer left having taken 10 seconds to produce photo ID and far longer in first arguing with the teller and then using up time to prove her wrong that she was “new” to the branch.

As a cancer patient, I am asked to produce my insurance card all of the time, so frequently that I keep it in a very accessible pocket on the outside of my purse, right behind my driver’s license. I was tempted to show this lady my purse and say, “Look, instead of digging your ID out of the main compartment of your overnight bag-sized purse, you could have this handy dandy purse that makes it so easy to prove your identity!”

I said nothing. It would not have done any good. I suspect that having the inconvenience of digging her ID out of her bag every time she made a cash deposit was not the issue. She wanted to be recognized. She wanted to be seen, to be important, and to matter. We all want to be recognized from time to time.

Having cancer can be a challenge to one’s identity. It can impact us in different ways from person to person and change over time. Treatment can be so physically, emotionally, and spiritually altering that it can be hard to recognize oneself.

A lot of us dislike the pink ribbon culture because we don’t recognize ourselves in it. That is the biggest disconnect for me because the corporate presence has made it about making money, not about breast cancer.

Other associations are murkier. For example, many people do not like the war metaphor in fighting cancer. For others, it rings very true. I don’t have strong feelings about it as long as the metaphor is used as a coping strategy that makes sense to the person at the time and is not used as an explanation for why some people die from cancer and some don’t. Coping strategies should not be used to blame people for dying. Coping strategies are ways to make the best of a bad situation.

A lot of people do not see themselves represented in the breast cancer research, especially as reported by the media. A lot of people feel like research findings are blaming people for having gotten cancer. I have a hard time with that. I don’t feel blamed by research but then again, I was a researcher for many years. My particular case of breast cancer fits some research on risk factors. For example, I have a history of obesity and did not breast feed until after I was age 30. I understand the evidence against women under 50 getting mammograms and even agree with it. However, I was 46 and invasive cancer was uncovered by a routine mammogram. I did monthly self exams and annual clinical exams with my physician. Even after I knew I had cancer and the location of the tumor, I could not feel it. I know that there’s a concern about over treatment of breast cancer but as it turned out, I had four invasive tumors. Given that the growth of cancer is progressive, I would have preferred to learn about my cancer earlier rather than later.

I suspect that just as we do during different identity transformations in our lives, as breast cancer patients, we try on different concepts and struggle against outside definition from others until we feel weave a new spider web that makes sense, one in which we are connected with others but recognizable as the unique individuals we are.

 

 

His eyes were wide and near tears. He is a pre-teen boy who I first saw when he was a 3 year-old. He said, “I can’t talk about it. If I talk about it I will have to run out the door.”

The kids, I see, however, are not typically good at keeping their thoughts to themselves. I waited for less than a second and he talked about it. He talked about it a lot. His mother was diagnosed with cancer last fall. He hates that his mother’s chemotherapy makes her so sick. He blamed her oncologist. I told him that a lot of people feel that way but explained how the drugs work and their side effects.

At one point he said, “The side effects of cancer treatment have affected my behavior and my attitude.” He also noted that his mother is less patient when she is sick from chemotherapy and observed, “I’m a person who needs people to be very patient with me.”

This wonderful boy has wonderful parents. He has a unique set of challenges and strengths. He works hard to help himself and his parents work hard to support him. Cancer does not give anyone a pass. And it doesn’t give our children, even the most vulnerable among us, a pass.

The more time I spend with cancer in my life, the more I re-encounter my friend, Nancy’s statement, “Cancer has tentacles. It affects many people.”

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