Archives for category: Breast cancer

When I was a girl, my younger brother, Jim frequently rode our bikes. I remember the pumping my legs furiously so that I could coast along for awhile without having to do anything to propel myself. It was exhilarating going down hills and on the flat, it created joyful stretches of ease, moments of effortlessness.

Being a healthy person, having a healthy marriage, and being a good parent are all “works in progress”. When John and I saw a psychologist for marital therapy years ago prompted by family planning issues, I asked her sincerely, “When is the time when we get to coast in marriage?” She promptly responded, “Never.” I remember my shock at her response at the time. It’s kind of funny looking back at my thoughts at that time. I do know that I was quite overwhelmed by my life and about to enter my second episode of major depression. It was a fantasy I had that after all of the hard work I had done in my life, that I would be able to coast. I would have an easy time as a wife, parenting  would get easy.

I was reminded of my wish to coast recently when I realized that after all of my hard work, I had strayed off of Weightwatchers and begun to gain weight. I didn’t gain a lot of weight and I’ve started losing again. It may not seem to be a big deal to you but I have gained and lost weight many times since I was 14 years old. And as I have mentioned, the last two periods of weight gain had put me into the clinically obese range. My breast cancer was highly responsive to estrogen and progesterone. Our adipose tissue (fat and other stuff) has glandular function and increases female hormone production. I know it is important for me to exercise and eat right. I am very lucky to not have physical issues that would interfere with my ability to exercise and to have a life situation that makes it possible for me to work part time. But even knowing these things, my weight has crept up in the past when I stopped paying attention to my habits, when I tried to coast in my life.

I have lived a good bit of my life working at capacity and feeling fairly stressed out. At these times, I have thoughts like, “It will be SO much easier, when ____________” This blank has been completed in many different ways over the years, “when I finish school”, “after the baby starts sleeping through the night”, “after my career is established”, “after my daughter is grown”, “when my husband’s job situation improves”, “after my cancer treatment is done”, “after my energy returns”, “after I start working full time again.”

But the truth of the matter is that although stress ebbs and flows throughout out lives, we are never done with it. And there are always unknowns and unexpected challenges that loom on the horizon.

In my work, I specialize in what for most children are chronic difficulties. And although many of them have loving and very skilled parents, even the most loving and skilled of the parents gets exhausted with the extra work their child or children require. There is also a period of adjustment after diagnosis that can take anywhere from weeks to more regularly, years, and sometimes, never. It is the adjustment to the idea that there will be no coasting as a parent and that one’s children will likely need more support and over a longer number of years, than other children.

I sometimes use an analogy with parents. I tell them, “Raising a child with these challenges is like running a marathon of unknown length and unpredictable terrain, with uphill, downhill, and stretches of flat. It is important to take the cups of water whenever you can.”

If I really think about it, coasting on a bike only lasted so long before I either had to brake because I was going too fast or start pumping my legs again so I could keep going. I have been working hard to take care of myself but also to nurture my relationships and carry out my responsibilities. I will keep working on the rhythm of knowing when to pump and when I can coast so I can keep moving forward and maintain my balance. And if if that little cup of water looks too small to last a lifetime, I will take them when they are offered.

 

My daughter saw it for the first time. She saw my TRAM scar. She had been very careful to avoid seeing any of my surgery scars especially a year ago, after she saw my very small and tidy scar that runs the circumference of my belly button that was a result of TRAM reconstruction. Seeing that little nothing of a scar was upsetting to her. She is not squeamish. It upset her because as she explained at the time, “They did it to MY mom.”

I was trying on blouses. I had to wear one in the charity fashion show with jeans. My daughter also happened to be trying on clothes and since I have a full length mirror, she was coming in and out of my room.

She happened to walk in when my TRAM scar, which sits about 3 inches below my waist, was exposed. She said, “Mom, your scar! That must hurt!”

The scar is wide; it arcs from one hip to another. I have been told by physicians that it is an incredibly neat scar for a TRAM; my surgeon is extremely skilled. It has faded over a year’s time. But it is still red and the vertical suture marks are quite visible.

I explained, “It doesn’t hurt any more. But yes, it was a big surgery and it hurt a lot at the time. That’s why it was hard to get around and why was home for seven weeks.”

She listened relatively attentively and then went on with what she was doing. This was the longest conversation we have ever had about one of my surgeries. She didn’t run from the room. She didn’t say, “Mom! I don’t want to talk about it!”

When I first had my TRAM surgery, I could not stand upright and I was instructed not to do so for some time to avoid damaging any of the internal or external stitches. I couldn’t laugh for awhile. I could feel my strain of my tissue against the edges of my sutures, which were basically holding me together. It burned like Hell. The same thing happened if I sneezed or coughed.

Currently, I have no evidence of disease. The searing and burning fear of cancer have faded for now along with the physical discomforts and pain. There were times, early on, when my daughter was so anxious about my cancer that she paced like a caged animal.

My daughter is a teen and her life is complicated. Most teens have a lot of emotional tumult in their lives. It is the norm and it is part of the re-organization that takes place that allows them to grow and become independent. I know my daughter’s emotional plate is full without having to worry about her mother. And I hate that. I hate that she has to deal with her mother having had a life threatening illness and that she has to deal with the possibility of recurrence. It’s a loss of innocence; I don’t know if she really appreciates that.

I’ve never been an emotionally perfect mother. I work to be as healthy as I can be. And I can’t expect myself to be a physically perfect mom, either.

The love I have for her, though not perfect, is infinite. I am so happy to be a mother and I am beyond blessed to be the mother of my remarkable girl.

Yes, I know I’m posting a lot recently. And I’m still not caught up with my posts for New Orleans!

As you know, I would like my house to be much cleaner and better organized. I have been focusing on the fact that I live with very messy people. Although this is true, I also realize that I am railing against the consequences of my reduced stamina and the fact that I have to sleep a lot. I just don’t have the number of work hours available in a day that I used to have. So, I’ve been doing less cleaning and organizing myself. And my husband has had to pick up a great deal of the parenting load.

Today, I had a thought. “My house is artsy, colorful, and a little dirty.”

For some reason, that does not sound so bad. The “little dirty” is perhaps a minimization but I could argue that it’s only “a little dirty” because outside of my daughter’s room, a snow shovel is not a required cleaning tool.

An “artsy, colorful, and a little bit dirty” house actually sounds like fun. A good house for a get together where you don’t have to remember to raise your pinky when you sip your tea.

I am going to try out this little re-frame and see how it goes.

“How long have you been cured?”

Her question caught me by surprise. We were riding on a school bus from a beauty salon to the venue for the breast cancer charity event in which we  were both modeling. I knew that she was diagnosed less than a year ago. She was self-employed and had benefitted from the charity first hand.

I answered, ‘I was diagnosed almost two years ago.’

I could have corrected her but I didn’t. She had also invited everyone to a potluck at her house. I could tell that she was having a powerful experience of belonging, being surrounded by 29 other women who had been diagnosed with breast cancer as recently as 9 months ago and as long as 19 years ago. I could also see the fear in her eyes, that she had transitioned from the shock and adrenaline rush of the active treatment stage to  “Now what?” I figured that I needed to respect her grief process and trust that she would progress in her understanding of her disease.

Her question reminded me of past experiences. I grew up in a politically and socially liberal Roman Catholic church. We didn’t talk about Hell or who was going there. We didn’t talk about “being saved”.

So the first time I was asked, “How long have you been saved?” I was similarly taken by surprise. It just wasn’t the way I was used to thinking about myself because my religious upbringing was different.

I talked to one of my colleagues and friends about this a few years ago. He is a thoughtful man, raised Lutheran who is now a practicing Unitarian. He was shocked that I had been raised without the reassurance of going to Heaven. He’d found this belief quite comforting while growing up.

Being cured and being saved are absolute positives. They can mark an end of struggle and an end to gray.

I don’t wish to disparage anyone’s beliefs as long as they don’t hurt others. My personal belief is that God is beyond my complete understanding but that I experience God is in the love people show each other, how we take care of our world, and the beauty of nature.

I don’t know if I am cured. I don’t know if I am saved.

I know that I am here.

As I mentioned last week, I am dealing with anger. I am pretty sure that it is about my stupid cancer. Getting sick for my New Orleans trip was really disappointing. I had seen it as an opportunity for a romantic “second honeymoon”. Adding to the frustration, the trip almost didn’t happen and was also quite expensive.

We still had fun but I’ve got to tell you, sitting on the plane on the way over was pretty uncomfortable. I was coughing a lot, I mean A LOT. I believe that I was the least popular person on the flight. The man sitting next to me had his body turned as far away from me as he could. A kind woman behind me handed me a cough drop. I already had one in my mouth not to mention the fact that I was fully loaded up with cough and cold medicine. And then I started having abdominal muscle spasms, which made me cough even more. That was a new one for me. I wonder if it has something to do with the abdominal muscle that was re-purposed for my TRAM reconstruction. I think that by the end of the flight, the man next to me was wishing that he’d sat next to a screaming toddler instead of next to me while I spewed my plague all over the coach section of the plane.

We arrived to New Orleans at about 3pm on Saturday. I took a short walk to the French Quarter with John. We walked down Bourbon Street until I finally said, “Yuck, I’ve gotten enough of an anthropological experience.”We walked over one block and had a delightful change of scenery to art galleries and such instead of Hustler clubs with horrible names like, “Barely Legal” with young and not so young scantily clad women standing in the doorways.

Sunday was our only full day without any band performances to attend. In the morning, I felt like I’d been run over so after John brought me some breakfast, I went back to sleep and didn’t get up until 4pm. I know I felt a lot better, showered, and got dressed for dinner. I have no recollection of where we went or what we ate though I know we walked there from the hotel, at my insistence and John’s objection. (I was still going to get in my 3 miles of walking in each day.)

On Monday, we went to a band performance, which went well. Then we took the street car to the Garden District to soak up the ambiance and to tour one of the cemeteries. We did a lot of walking that day. There were definitely some positives but I must admit that I was in a foul mood and complained a lot. Then John complained about my complaining and I said lamely, “But I’m sick! On our vacation. Waaaaaaaaaah!” (Okay, I didn’t really say, “waaaaaaaah!”) His suggestion was, “So you’re sick. Can’t you just make the best of it?” “But I am!!!!!!! I am out of bed!!!!! Also, your wife is sick and cranky. YOU make the best of that.”

So at this point of reading this post, you may feel sorry for my husband. And if you do not, you probably should because although I snapped out of my disappointed child routine for the couple of days following, once we’d gotten to the day after the fashion show, I was exhausted and mad again.

I was annoyed about every little thing. I have not been in a nasty mood like this in quite some time. And I don’t remember the last time it lasted an extended period of time like this. And John got the brunt of my perpetual dissatisfaction. I actually felt a lot better after I wrote my post complaining about how John often doesn’t answer me when I talk to him. Writing has a way of doing that for me. But by last night I was exhausted and fuming again. “Why is this house such a mess? Why do I have to live like this? This isn’t the way I want to live!”

Truth be told, although my husband is not the best at housework, he is a really hard worker. He is really bogged down with work and helping our daughter keep on top of her schoolwork. She missed nearly an entire week of school for that band trip and she takes a very difficult schedule. John spent many hours with her over the weekend sorting through what she missed, what she has to turn in, and what assignments needed to be done over the weekend. She is not easy to help, either, and is prone to getting frustrated and losing her reasoning skills. “What do you mean I have to answer in paragraphs? What does that mean? This is so stupid!”

He was so patient with her all weekend and here she and I were providing grumpiness in stereo. By the end of the night, I was feeling pretty remorseful. Today, my first thought was, “Put a cork in it, Elizabeth.” I know that my anger is very understandable and that I need to process it. Managing anger is tricky, though. There are ways of dealing with it that make it worse, for example, constantly complaining to one’s husband.

Maybe writing this post will help. Maybe I need to keep reminding myself that my anger, just like sadness and fear, do not last forever.

Even though all feelings are right. Anger FEELS wrong and I find myself looking ways in which I feel that I have been wronged in order to justify its expression. And then once I realize this is what I am doing, I feel wrong again.

 

As you know, I participated in charity fashion show last week. I had mixed feelings about the fashion show part but strong positive feelings about the charity itself. The day started in the afternoon. We met at the venue for the show, practiced walking as well as entering and leaving the stage as a group.

There were about 30 female models and all of us were breast cancer survivors. Many of the women were pretty young. Some were middle aged women who had been diagnosed in their 20’s. Some women were recently diagnosed. One woman was obviously still going through chemotherapy. They were all friendly and appeared to have a good time. I enjoyed the camaraderie and the chance to meet some new people, a number of whom live in my neighborhood.

I am a bit of a ham socially, if I tell the absolute truth. I also enjoy public speaking and miss making research presentations at conferences. I am not the smoothest orator. As an “out loud thinker” I tend to revise what I am saying on the fly, sometimes mid word. And sometimes I repeat myself. This is also the way I converse. Somehow I nonetheless manage to communicate well. And even when I get nervous when public speaking, I usually get over it easily by saying something funny. Once I get an audience to laugh, it is much much easier to present because the presentation is so much more like an interpersonal exchange when people are paying attention.

But walking in front of people and trying to look pretty? That’s a bit intimidating. I love beautiful clothes. But I like what I am wearing to be a garnish rather than the main entree. I thought about my wedding and how incredibly self-conscious I felt to have all eyes on me.

I have done a lot of work to feel more comfortable with my own body, imperfections and all. And the challenge of this fashion show was not lost on me. This chance to challenge myself was one of the reasons I agreed to do it. Not the main reason, but a small reason. I knew I could do it if I adopted the right frame of mind and did my job.

I am pretty good at doing an assigned job even if I don’t like it or would never do it under other circumstances. I remember the first time I went fishing and actually caught something. I was 12 years-old and my family had gone to the trout farm a couple of miles away. This is where I learned that there is a fish food called, “Purina Trout Chow”. It’s pretty easy to catch a fish at a trout farm, especially using trout chow as bait. I am a sensitive person by nature. When I caught a fish and needed to kill it? I started crying, not a little but a lot. I was upset. My mom said, “But Jesus was a fisherman.” My reply? “Then Jesus was mean!”

Eight years later I was working at a daycare. We took the kids on a field trip to the very same trout farm! But I was an adult who was supposed to be a good role model for children. So I helped them bait their hooks, take their fish off of the line, touch the fish guts, etc. I just did my job.

For the fashion show I told myself that I was playing a role of myself minus my unproductive self-consciousness. It was easy to smile because I am a generally happy person with a nice smile. People respond well to it. I planned a couple of “moves” including a goddess-like arm raise to accompany the dress I wore that had a bit of a toga feel to it. The arm raise was inspired by Rupaul so to me, it was funny because Rupaul cracks me up.

I was happy with how I modeled. I smiled, I walked comfortably in heels, I showed off the clothes, and I used a little hip action and a few Vanna White moves, when appropriate. My hair and make up was done professionally and I was wearing pretty clothes that I liked. I felt happy and pretty. The experience also led to some deep reflection about my cancer, my life, and the preciousness of my life.

So all in all, it was a varied and satisfactory experience. Yesterday, I looked at the video my husband took on the night of the fashion show. I didn’t recognize myself. I was shocked by my appearance.

And that was the point at which I forgot my job as a mother. I blurted out, “I look fat!” I said it right in front of my 15 year-old daughter. To my recollection, I had never before made a negative comment about my body in front of my daughter. Reminding me that she really is my daughter, she took me to task for being a bad model of positive body image but she did it in a nice way.  I am really proud of her. In contrast, I was disappointed in myself for not treating myself fairly or with kindness.

I have been putting on weight lately and I went back on Weight Watchers right before I left for New Orleans. And I know that I am back on track. Honestly, I am only about 5-7 pounds overweight. It’s really not a lot. But it’s about 15 pounds more than I was prior to the winter holidays. That’s over a full dress size, well kind of. I usually wear dresses. And over the years, I have become a master at choosing dress styles that accommodate my historically variable weight. When I’m not wearing dresses, I wear spandex work out clothes and spandex is stretchy. It takes me awhile to notice that I’ve gained weight. Oh yeah, I had also stopped weighing myself. And even though I’ve continued to exercise regularly, I was eating more and more.

Realistically, I looked pretty. That was that stupid negative tape in my head that was shocked into a reappearance. But I didn’t look the way I thought I did. And for someone who has a hard time keeping my weight down and further, is supposed to keep my weight down for health reasons, I scared myself a little.

I had mixed feelings prior to the fashion show and I leave it with mixed feelings. As Rupaul says, “You better WORK.” I still have a lot of that to do as I continue to work toward self acceptance.

FYI: This is the goddess pose I copied from Rupaul.

FYI: This is the goddess pose I copied from Rupaul.

When I talk to my husband, he often doesn’t answer. This is not new to our relationship. It has been true for decades but waxes and wanes depending on his stress level.

Sometimes, he is just spacey and lost in thought. Other times, he is feeling anxious. He is very sensitive to rejection at these times. I may actually be annoyed or mad at him. I may not be mad, at all and just trying to get the business part of our lives done and coordinate household responsibilities. I am an organizer and a “big picture” person when it comes to administering a household. John is not. After many years, he asked me to start writing tasks on a “honey do” list, a little white board in our kitchen. I don’t really like doing this. I think he would be more likely to remember to do the task if he wrote it down himself. For some reason, that is something he just won’t do. He wants me to write it down. Sometimes this feels like a face saving move on his part. I wouldn’t mind writing it down if I didn’t know that a number of the things I’ve written down, stayed on that little board for years. So it filled up with tasks, most of which never got done. And every time I worked in the kitchen, I would see it and it was a visible sign of my frustration.

I hate the silence. The non-answers that could mean many different things. But even when my husband is merely lost in thought, the silence hurts. Relationship intimacy doesn’t just come with the package, it is something that must be continually nurtured and protected. It is important for marital happiness, for sexual health, and for emotional well being.

I nag, it is true. It is not a super power but I am also not an evil villain. I often feel caught between a rock and a hard place. John tells me that he is going to do a task and then he doesn’t do it. An excellent example might be doing the dishes. I’d say that between 1/3 of the times that John says he will do the dishes before he goes to bed at night, I wake up to a sink full of dishes. About half of the time, most of the dishes are done but some are either still on the dinner table or on one of the kitchen counters. And almost 100% of the time, either the table, counters, or the stove top are dirty.

If I say something, he probably won’t finish the job because he’s already gone to work. If I need to use the sink, then I need to clean it out. Later, when we are discussing dishes, because they are never to be taken for granted because they are not yet a habit, I might clarify that what I am asking is for him to do ALL of the dishes and if the kitchen stove top needs to be wiped, I expect him to wipe it. By this time, I am at my best, using a businesslike voice and at my worst I am doing nothing to conceal my annoyance.

The follow up discussions almost never go well. John feels criticized. And you know what? I am criticizing. I am complaining about the job he did. I understand why he doesn’t like it but he often communicates to me an expectation that a loving wife doesn’t ever criticize or complain. Although I don’t think he 100% believes this, it is an ideal he has and I even think he believes it to be attainable. These are the the times when my husband’s dreamy romanticism conflict with my pragmatic realism.

Relationships are full of noise. Some of it is like beautiful and romantic music. Some of it is not. Some of it is disagreement, some is problem-solving, some is negotiation. Relationships are also full of silence. But this kind of silence, the not answering with clear words but instead answering with confusing actions or lack of actions, is not helpful. These are the times when I feel that I am to match his silence with my own. And sometimes that is what I do because I have already tried to make my point and failed time and time again.

These are the time I feel silenced, that my job is to pick up after the many unfinished tasks in my household and not say a word. Just do other people’s work and carry through on other people’s promises. There are times in my life I am resigned to this. There are times in my life when I know that my husband has many other wonderful qualities that compensate for these shortcomings.

At other times, I feel alone. I feel like there is work that I have to do and for which I will never be appreciated. If I say something, I get a negative response. If I am silent, I get no response. To have to have no routine between the two of us to take care of these things is a perpetual stress to me. Routines can make life a lot easier and require a lot less higher order thinking. I would like to preserve my mental energy for things other than working and reworking the daily household routine as well as keeping track of so much of the family’s schedule. People who do not have organizational skills like this, the skills for carrying out and managing the most boring and perpetual household tasks just don’t get it. They don’t get the value they don’t get toll that it takes on the very most developed part of the human brain. My husband and I do not have a traditional marriage but my brain works like a housewife’s and his does not.

When it comes to managing my cancer, I am even more alone. And that’s one of the main reasons that I blog. I don’t need my husband to attend my appointments any more. He has no idea what my schedule is like and how it impacts the rest of my life. He can read about it here but he can’t experience it. And when I talk about the anger I feel, the fears I have, or my annoyance with the inconvenience of it, I know he gets afraid. He wants to do something. And there’s nothing for him to do but there’s a great deal he could say.

I empathize with him, really I do. I empathize with him when I don’t know what to say to one of my friends with mets, when they speak of incredible pain or fear or anger. Every once in awhile, I think I rise to the challenge and say the “right” thing. Other times, I just do my best to communicate the fact that I care. It never seems like enough but I also know that I can’t solve the problem of cancer. I can just do my best to be present. Sometimes, and I’m ashamed to admit it, I feel negative toward my friends’ cries of pain. I have thoughts like, “She must have waited too long to take her pain meds.” It doesn’t happen frequently but at those times, I understand why so many of us have lost the support of friends and family. Our brain tricks us into blaming someone with a painful and life ending disease to protect ourselves from our own helplessness and guilt. At these time, I am forced to stare at hard truths about the vulnerability of life and that fact that people I love are in excruciating pain and experience incredible isolation.

I am a loving human being. I am also flawed. I do, however, commit to keeping present with my family, my friends in face to face and cyber worlds. In our relationships, I will make noise.

 

Anger is a stage of grief. And the grief stages don’t go in a lock step linear order. They swirl in and out. I have had difficulty managing anger in my past and it was typically rooted in anxiety and not feeling like I deserve to assert myself to others. I am not a wallflower by nature and there’s only so much time I can act like one. And then I get really angry.

I have not felt a lot of anger since my cancer diagnosis nearly two years ago. But today, I am so incredibly angry. I have gotten through some of the most stressful few weeks of my life being relatively reasonable and calm outside of an eye tic. I don’t blog about EVERYTHING in my life. I’ve got to tell you that the stress has been big but I THOUGHT I was managing it.

Then I got a stupid cold! Right before I leave for New Orleans on Saturday to visit the city and see my daughter sing. I see this as a once in a lifetime opportunity. I have never been to the city and I have never seen her perform in such a setting.

The trip almost didn’t get scheduled at least for John and me to be able to attend. There were financial issues that needed to be addressed. It is very expensive for me to take off time from work not to mention the cost of air travel and hotels. Then there was a whole issue of my seeing the trip in a much different light than John did for awhile. Without going into a great deal of detail, I saw this as a chance for us to have much needed time together. It took awhile for us to see this similarly.

Then there came the fashion show/charity opportunity, which turned out to be far more of a commitment than I had realized. I turned my schedule upside down and was able to get everything done including my work.

Then I got a stupid cold. An annoying stupid cold. I rarely get sick unless I travel. My typical pattern is to get sick within three or four days of a trip, assuming that it involves air travel. Airplanes are floating germ boxes if you ask me. I get sick about a third to one half of the time. Now I am sick before hand. The whole thing will be in full bloom by Sunday.

Again, I rarely get sick but when I do it can be severe. I was a premature infant and was born with respiratory distress. I have residual respiratory issues. So although my immune system is strong, my respiratory system is compromised due to probable damage including collapsed alveoli and missing cilium. Alveoli help us breath. Cilium help move fluids out of our body.As a consequence, my body relies more heavily on coughing to move fluids. So I cough A LOT when I am sick to the extent that after 27 years together, it still freaks my husband out, especially when I wheeze and gasp for air. My daughter also gets alarmed. The parents of my patients get alarmed. You probably get the picture by now. My cough is alarming to people. The only way I can describe it is that at its worse, it sounds violent. I can’t tell you how often I am asked to reassure people that I am not dying when I am in the middle of a coughing attack. By the way, this is not a time to ask someone to talk with you, especially when I am wheezing. I have attempted to use the logic that if I am coughing it proves that my wind pipe is open, but this has yet to convince anyone.

So now I am two days from getting on planes and having people think that I am going to die in my seat not to mention my fears that despite all of the hand sanitizer that I use will not protect others from catching this stupid cold from me.

Body, I can forgive you for getting cancer, as long as you make a firm purpose of amendment (the nuns taught my mom that apologies don’t count without one) but if you think you can keep me from seeing MY kid in New Orleans, you have another thing coming.

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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Lindbergh High School Reunion '82, '83, '84, '85

Join us this summer for our reunion in Renton, WA!

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

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