And So, On

I am rapidly approaching the 5 year mark after my Leukemia diagnosis, which will come up in June. My regular life has been busy like anyone's- working, traveling to Asheville, seeing friends and family, working in my garden, running, hiking, biking... This blog became less and less important to update. I wasn't sure I had anything to say, to any audience really. So if you have stumbled across this, I am still here (now 50 yrs old!). People do get better after chemo and the horrendous fight that takes. People do survive and get back to their "real lives" - a new normal appears. I'm not sure I can ever get completely away from those many difficult cancer experiences and the attendant worries that shadow me. But I am moving on. I will close out this blog, grateful beyond compare for the life I have now. And So, On

New Mexico Pretty

I wish I had one of those features like the voice over on the TV show Glee so that I could quickly recap from the last posting to the current one. I am busy or lazy or both and find it hard to keep this up to date. It's a good sign that my life is now full of fun, activities, and yes, work, that I don't often stop to record my day, my week or even my month.

So imagine, a real quick summary goes like this...my Mom came to visit for a recheck at Duke; her vision is now 20/63 in the "blind eye." She had another Avastin injection. Follow up again in 1 month. My sister blew out her back-really, her disc ruptured, and she had surgery this week. Nurse Dad was there for a week, followed by Nurse Mom, who is there now. Handy when your parents can go from patient to medical care provider so adeptly. Work has been busy-crazy busy. I saw more than 100% of my expected patient load for July, August and September. That's a lot of charts, exams, notes, and labs to handle.
And, we took a week of vacation to New Mexico over Labor Day.

We met Holly's parents in Taos at a house her Mom had rented for the week (Pepe's Place). It was just north of town with a spectacular view of Wheeler Peak, the highest spot in NM at 13,161 ft. A beautiful mountain range stretched out behind the house with gorgeous views of pink and purple light as the sun went down each night. The light in NM really is spectacular- as wonderful as everyone says it is. I can see why Georgia O'Keefe fell in love with it. The light changes everyday, and the views of the sky and mountains are stunning. Taos is a terrific town and reminds me a lot of Asheville and Arcata. The downtown is small and walkable, with plenty of art galleries, boutique shops, and eateries. Wisely, they have relegated the chain stores to the highway on the southern edge of town. The mix of tourists, gringos, native americans, and hispanics makes for a pretty interesting culture too. We met two women who were hiking Williams Lake the same day we were, who said that they enjoy splitting their time between Ft Myers, Florida in the winter and Taos in the summer. I can see why. Summer is sunny and warm with cool nights. Winter, apparently is long but also sunny; they'll have snow by the end of this month at some of the higher elevations. Thus the abundance of Subarus everywhere.

Here's a partial list of things we did:

a trip to Santa Fe to see the Abstract exhibit at the Georgia O'Keefe museum

a hike to Williams Lake with another hour of hiking up the bushwack trail towards Wheeler peak

a hike up Gold Hill Mtn (12711 ft); it was 38 F when we started that hike

running through our Upper Colonias neighborhood each morning with the mountain vistas filling our eyeballs

Holly and her Dad went horseback riding with a real, live, honest to goodness cowboy in Arroyo Seco

I ate honest to goodness pinon caramel ice cream in Arroyo Seco (easier on the body in so many ways)

toured the downtown Plaza, where the historic center of town is now the de facto tourist crawl

ate lunch at a picnic area overlooking the Rio Grande

So that you can see what I mean about the light, I've included some photos from the trip.

Sadness Revisited

The last two days I have encountered worrisome laboratory findings waiting for me when I logged onto my computer in the morning. Yesterday, there were abnormalities in the bloodwork of one of my prenatal patients. After discussing her case with the OB specialist affiliated with our clinic, I had to send her straight to the hospital for a potential induction of labor even though her baby is only 33 weeks along. One of the sweetest parts of providing prenatal care is how one patient gets wheeled into the labor room but two, hopefully healthy, individuals emerge. However, one of the scariest parts is that both individuals are in danger when crises occur with the pregnancy or delivery. Hopefully, this time all will turn out well for both mom & baby.

Today, I pulled up the labs from my patients yesterday on my way into our weekly staff meeting. At the top, was the blood panel I'd ordered on a 7 yr old boy with a nosebleed. Mom mentioned that he seemed to bruise easily, more easily than his older brothers, so I'd ordered the blood counts to reassure both of us. Unfortunately, this little boy's labs were severely abnormal with low values of infection fighting cells, red blood cells and platelets (they help the blood to clot). As a first year intern, right out of medical school, I'd seen numerous cases of abnormal blood counts like these in children before they were diagnosed with leukemia. We seemed to have at least one case of new leukemia each week, as doctors from rural and far away areas sent their sick patients to be evaluated and treated by the Pediatricians specializing in childhood blood cancers. I felt a sinking feeling in my stomach as I realized all that this patient and his mother had ahead of them. Though I had only seen the boy once, the previous day, I had to call his mom and deliver the bad news. And I had to send them immediately to UNC to be evaluated by the pediatric specialists in hematology/oncology. I tried to remain calm and reassuring on the phone even though I felt a dumptruck load of sadness raining down on me. By the time our staff meeting started, tears were rolling down my face. My colleagues were comforting, of course, but I couldn't hold back the tears. I suddenly felt so overwhelmed with pain and darkness for them, for their impending suffering. Childhood blood cancers are (now) 95% cured. But that road, well known to me from my own leukemia 2 yrs ago, is a tough one. Needless to say, I was never able to recover fully from the difficult start to my day-alternating between feeling so, so sad for them and reliving how hard all of that was for me.

Even now, hours later, I am still resonating in the sadness of what is to come for them. Though I feel especially lucky to have survived my own "major death scare," I feel uncertain and vulnerable. That is the hardest part of "sitting with it" . Tomorrow will be a bit better I do feel certain of that.

Flustrated

I try to let my patients tell me how they are feeling or describe whatever symptoms brought them to see me. Every once in a while, I hear a really good word that isn't, in fact, a word. When I was working in the rural countryside outside of Asheville, my patients often told me that they were "flustrated" by this or that. As I write it now, my computer's spellcheck is underlining it in red to let me know that it's not a real word. Well, let me say that it may not BE a real word but it IS a real feeling. I suspect the word originated when someone combined the words "frustrated" and "flustered," probably in some agitated state of mind.

Yesterday, my patients flustrated me (there goes that red underlining again). I had the middle aged, heavy woman who argued with me when I said I wouldn't write her out on disability from her Walmart greeter job. There was the young diabetic man with foot pain and whopping high sugar levels who doesn't take his insulin (which would lessen the nerve damage and subsequent foot discomfort). There was the 5 yr old just discharged from the Psych hospital, who screamed at his momma the whole time he was in the clinic. Regardless of what you personally believe about the value of psychiatry, some people really do need the help & expertise they provide. Suffice to say, he is one of them. Then there was the new patient who needed forms completed to renew her driver's license. After many roundabout questions, I finally learned that she needed to have an eye specialist evaluation and a psychiatry follow up for her schizophrenia. Whew! Am I helping these people at all? Some days I wonder if all of those years spent studying biochemistry and physiology should have been replaced by psychology and social work. I was completely undone by the end of the day, flustrated for sure.

Holly asked me what I planned to do for myself this morning before I head to the clinic. I decided to go to the Sportsplex and swim laps. I haven't been a swimmer in over 20 yrs-honestly. I used to swim quite a bit during college and graduate school. But I haven't been in a pool in decades (it's more scary to write that I haven't done something in DECADES than to actually do it. But there you go in middle age). I really had a great time. It took about 10 minutes to feel comfortable and get some semblance of form back. Then I swam for 50 minutes, which seemed long enough for a good workout and to chew up some of the anxiety and frustration from yesterday.

My mom left this morning, after staying with us for the past week. She was here to get a second opinion and another surgery on her eye at Duke. She'll be back in another month for her next evaluation. Hopefully she'll regain some sight in that eye. I'll say more about that later.

Grateful to be here. Thank you Holly for all of your help with my Mom's visit.

We watched Cherry Blossoms, a German movie, recently. Very lovely and bittersweet. I recommend it. Also saw an older movie, Diva, which was excellent as well.
Photo: My Mom and me at the beach house a few weeks ago (on my birthday).

Why I Left

On Palm Sunday, 3/28/2010, my stepfather died of brain cancer. The week before, my friend's mother died of complications associated with lymphoma and heart failure. The following week, our buddy Jo died of pancreatic cancer. It was just too much illness and death from cancer to leave my coping mechanisms untouched. I felt myself getting pulled further and further under water with each of their last days. I wanted to feel lucky to be alive, to have emerged from my own two bouts of cancer, but I couldn't muster it. My mood slipped lower and lower, sinking me into a panicky, worried state. Several days later, I attended a medical conference on the H1N1 or swine flu. The researcher presented information on the number of cases recorded in the state with information on the number of deaths from the virus. Three people died in the Duke Bone Marrow unit where I received my Leukemia treatment from June until November of 2006. That just hit too close to home. Had it been different timing, it could have been me dying of the flu when my immune system was obliterated by my chemo. Had it been different timing, it could have been me who was treated with Tamiflu, only to discover that my virus was resistant. Had it been different timing, it could have been me they intubated when my lungs stopped exchanging oxygen. No, it wasn't me, but I became more anxious and unhinged anyway.

Then I had my own health scare when one of my cell counts fell a bit below normal during one of my routine blood draws. It sent me over the edge. I couldn't concentrate at work or at home. I couldn't relax without worrying that the numbers were evidence that my leukemia was coming back. I fretted through 3 weeks of sadness and a whole new round of "what ifs?" Then I had my blood drawn again. My counts were back to normal. It was just a hiccup. I'd love to say that I found a way to control my emotions and all of the negative thoughts, the worries, but I didn't. My counts just came back to normal, and my mood improved. Hallelujah!

That's where I went for a while.

Happy Birthday to me...48th today.

Losing My Way

Last Friday I got a message on my cell phone from a police officer who asked me to call her about a subpoena. I guessed that one of my patients had stolen or forged a prescription. The policewoman informed me that I was being subpoena'd by an attorney in Asheville who needed me to testify in the criminal case of a former patient. The attorney had actually called me two weeks prior to ASK me if I'd be a witness for his client, someone who had been accused in a sex abuse case. The attorney hoped to refute the sex abuse allegations with my testimony verifying that his blood pressure medications made him sexually impotent. I refused to testify in his case, so he had me subpoena'd to compel me to testify. Usually I would be only irritated by such a maneuver. But I really lost my way on this one. My family has had plans to vacation at the beach with my newly widowed mother for months. Each year, my mother rents a wonderful place at the beach during the week of my birthday. This year, after all of the stress associated with my stepfather's diagnosis and subsequent death from brain cancer, we have been particularly looking forward to our week at the beach. I explained to the lawyer that I had a week of vacation with my family planned for the week of his trial. He explained that the court proceedings in this criminal case in Superior Court would take precedent over my vacation. (As my friend who is a lawyer explained-"the court doesn't care if you have vacation since your testimony may decide whether someone goes to jail ..."). I have to say, I came undone by this whole episode, which seemed like such an unfair travesty. I did not want to testify for this creep, and I resented the jerk of a lawyer for serving me with a subpoena that would potentially wreck my vacation unless he found another MD from my former clinic to testify.

I am ashamed to say that I focused entirely too much on the potential loss of my vacation with this inconvenient timing. I was in an "ill mood" as my grandmother used to call it, for most of the weekend and the early part of the workweek. I found it hard to focus on anything other than my anger. I kept telling myself that I needed to relax and let it go. I was letting it control me. And then I realized this whole episode for me was about control. Apparently, I have to keep learning this same lesson over and over again.

When I had cancer the first time, I realized that we are all going along, living our lives, just under the illusion that we are in control. I got through that tough, tough 6 mos of treatment, happy to emerge from the other side no worse for the experience. I went back to work, my hair grew back, and I moved on. When I got cancer the second time, as a result of the chemo and radiation used to treat the 1st cancer, I got that slap in the face again. It's as if the universe was saying (again), "You are not in control." Oh man, how many times am I going to learn and relearn and relearn this one? I mean encore un fois over again...
Sooooo, here I was realizing, encore un fois, that I am not in control. If the Superior Court of Buncombe County tries to subpoena me to testify in this case, who I am I to say that I won't be there-vacation or no. When I finally came to that realization, and let it go, my moodiness lifted. I felt so much happier. I wasn't ill or angry or resentful anymore. The next morning, I telephoned the lawyer and surprisingly was told that I didn't have to appear. He'd found another MD to testify in my stead.

What's the life lesson here? I lost my way because I thought I could control something that I couldn't. We all delude ourselves like this each and every day. Maybe it helps us somewhat. It can be paralyzing to think that whatever you do or plan can be readily undone by the universe. Here's what I took from it: I spent so much time being angry and upset, fretting about what would happen if I "lost" my vacation, that I lost 4 or 5 days to that funk. I'll never get that time back. And unlike most people, I actually am aware that our time here is precious. I squandered some of mine on something that didn't matter, really. Thankfully, when I let it go, I got good news, and I am now writing this from the beach. Hopefully, I'll be smarter next time.

Forever and a Day

I have been reluctant to write for quite some time, trying to deal with all of the life events of friends and family. On Palm Sunday about 9am, my mother became a widow. Brian's death did not come as a surprise, of course, since he had been diagnosed with an aggressive brain cancer in September of 2009. But he seemed to do well with the surgery, chemo and radiation, and was at least, holding his own until the cancer returned around Christmastime. He never really recovered from the second major surgery- marked by one mishap after another-a head bleed, leakage of spinal fluid from his ear, delirium, a stroke that left him with poor strength on his right side, and then countless hours of rehab, followed by a restless course at home with hospice care. The end is never easy, and his wasn't either as my mom and his son, Vernon, struggled with him until his placement in the hospice facility in Mt. Pleasant. Even the last little bit dragged on more than usual, until Palm Sunday when he passed away just before 9 am.

We had a church memorial for him that Wednesday followed by the scattering of his ashes off the dock at their house. The service was terrific with Father Charlie, their former minister, doing the eulogy. Charlie had know Brian and my mother for a long time, and he really conveyed that familiarity in his remarks. The memorial included a full church service, something that I think Brian would have really liked. The scattering of the ashes involved just family-all of us huddled together on the dock, at extremely low tide, watching his dust scatter in the wind and water. Amazing that such a big guy is reduced to not much more than a gallon sized bag of ashes and bits of bone after cremation. I scooped a big handful of the gray dust and bone shards to feel him between my fingers for the last time- a welcome relief after all of the words and feelings that had been swirling about all day. The wind took some of the dust into that shallow water and mud and blew some of it onto my pants leg and the dock surface. It felt so good to have a bit of bone in my handful and get to feel something solid. But that is just the way we are, isn't it, holding onto solid forms for as long as we can. I was so glad that we could scatter Brian's ashes exactly where he wanted to be-the very place he most loved in the world. It makes me tear up even now to think about how sweet that was. How it made me feel part of something bigger than myself, than any of us. What a delight to share all of that community and fellowship in Brian's honor. I know that I was not the saddest person there that day, but I had my own special reasons for being sad and touched and fortunate to be there as a LIVING being, given all I have been through with my own cancers. It makes me all the more grateful and pleased to be here.