Day 173 - journal recs and more

What a lazy day today was! I read a couple of journals and did some weaving and that was about it! I've been planning this weaving project for ages; I think I bought the yarn a few years ago and just haven't felt like doing it. I'm not sure why because it sure is beautiful. It's a nubby silk/wool blend and the idea is to do a nice overshot sort of pattern with the same warp and weft. I'll show you the front tomorrow when there is enough done to see the pattern.

About half of the warp I'm working on now.

As for journals: The Dec 6, 2012 NEJM is completely lacking in interest for me except for an OK Clinical problem-solving article. The Dec 4, 2012 Annals, however, is packed with stuff I thought was worth a real look. The first article was on "Estimating Overdiagnosis in low-dose CT Screening for Lung Cancer" and was from Italy. They had a bunch of people who were getting low dose CTs every year and they had a complicated protocol where they didn't tell people about small nodules without scary features and just repeated the CT in a year. If a lung cancer appeared one year that wasn't there the previous year, they assumed it was there with a size of 2 mm (just below their detection limit) and calculated the cancer's doubling time. About 25% of people had slow growing or indolent (doubling time of 400-599 days or 600+ days). Their suggestion was that these were likely to be "overdiagnosis." People with fast growing tumors had a mortality of 9% and people with slow or indolent tumors had a mortality of 0.9% per year. Kind of interesting, but only works if the patient has regular lung CTs.

Next of interest was an article about "Interventions to Improve Adherence to Self-administered Medications for Chronic Disease in the US." Big surprise: reduced out of pocket expenses, case management and patient education with behavioral support are useful. I think I have read other studies that found case management not helpful--even one that found it made mortality worse for (I'm pretty sure) COPD'ers and I think I have also read one study that found surprisingly that the co-pay did not make a difference to compliance (in this one study). I've never read that patient education has had a negative effect on compliance. At the back is an "In the Clinic" article about hep C. I didn't read it in any detail because the way I manage hep C is to get a hepatology consult. I know how to diagnosis, vaccinate and put in the consult request. That has been a successful strategy for me so far.

The final article of interest in the Annals (see what I mean?) was a review of "Comparative Effectiveness of Warfarin and New Oral Anticoagulants for the Management of A Fib and Venous Thromboembolism." So, you may not know that Warfarin stands for Wisconsin Alumni Research Fund (arin added to the end). I did med school in Minnesota, you see. So, the New Oral Anticoagulants (NOAC) are in one of two classes: factor Xa inhibitors or direct thrombin antagonists. Thrombin antagonists' names end in -agatran and there is only one on the market right now, dabagatran. Ximelagatran was taken off the market due to liver toxicity. Factor Xa inhibitors' names end in -xaban. There are four, only two of which I had heard, apixaban, rivaroxaban, edoxaban and betrixaban. It's kind of easy to remember which is which because direct Thrombin inhibitors are the agaTrans and factor Xa inhibitors are the Xabans. The direct thrombin inhibitors may not be all that important to remember because the only one left is being evaluated by the FDA for reports of excessive bleeding especially in elderly and renally impaired patients. Anyway, for Afib, the conglomeration of the evidence slightly favors but with a bar crossing 1.0 NOACs (0.78 to 1.02), best estimate 0.89. For venous thrombo embolism, the range is 0.48 to 2.10 for the risk ratio, best estimate 1.0. For adverse effects of fatal bleeding and major bleeding, NOACs were superior. For GI bleeding, warfarin was superior. With respect to MIs, factor Xa inhibs appear to be about equivalent to warfarin and direct thrombin inhibitors appear to be associated with MIs. People on factor Xa inhibs were about as  likely to discontinue the med as people on warfarin due to side effects, but people on direct thrombin inhibitors were more likely. It looks like they are all about equivalent for LFTs greater than 3x the upper limit or normal. It also appears that the studies that showed bigger benefits for NOACs had worse control of the INR in the warfarin arm (not surprisingly).

As for news of the previously leukemic body, I was a little bit sore from yesterday's exertions so I decided to take today off from the gym. I am looking forward to Planet Fitness tomorrow. I also have my second opinion date: January 2. I may have mentioned that I have to see pulmonary too and am working on getting that set up (the reason is that my CT scan is still not normal. Every time we look, it's abnormal in a different way so I'm thinking none of it can be too bad. John thinks it is probably post-chemo stuff. I was very happy to see the nodules go away, speaking of screening for lung cancer).

I haven't barfed in 48 hours. My family is so proud of me.

Since this a a complete pot pourri entry, here is a nice video about kids who play instruments in Paraguay.

For me, I am hoping for a restorative night's sleep. For you, restorative sleep is not a bad thing either.

Day 172 - work and books

As promised, today I visited my therapist to talk, largely, about my return to work. We talked about what kinds of indications would let me know I was doing ok and could keep working or even increase my hours versus letting me know I needed to go more slowly or even decrease my hours. Of course, things like what my family notices or if I start looking or feeling tired or overwhelmed will be indicators. Other ones are if I am not able to get nine hours of sleep in a night (that seems to be what I need now), if I am not adhering to my four hour limit or if I am having a hard time keeping work to the twelve hours I'm starting with, if I feel like or other people feel like I'm not thinking well or not looking well or getting tired out regularly.

She also pointed out that since I am going back the week before Christmas, that it will probably be pretty difficult to work three days the week or Christmas and the week of New Year due to holidays off so those weeks I'll only work eight hours--two days--those weeks. I can do that! Then after two or three weeks, I'll reassess and see where I am: ready to add four more hours or wanting to wait another week or two. That seems like a nice gentle schedule.

My friend, Rob, pointed out quite wisely that in either direction, if I am off the mark, it is not hugely problematic; I can easily ramp my hours up or go back out on disability. I really want to avoid the going on and off that I have seen other people do, however, but I guess it would not be that terrible if I had to do it; it just seems very disruptive to everyone.

I appreciate everyone's opinions and thoughts. Thank you. At this point, my plan will be to return to work a little bit on the 18'th. I'll be starting first with Home, Health and Hospice and then back to Dartmouth in a few weeks.

In other news today, I decided to push myself a little bit on my walk today. I was able to put three 14 and a half minute miles in a row so that's pretty good. I was a little tired, but good tired, like I'll sleep well tonight. Sadly, it is so much colder now than it was this afternoon, I'm afraid it's back to Planet Fitness for me tomorrow. Today, I also did tons of laundry, a bit of weaving and dealt with a barfing dog.

I finished John Iriving's newest book "In One Person" today. I thought it was tremendously ambitious and didn't really succeed at all that it tried. It seems like the kind of "summing up" book that an author would write at the end of his career and I wonder if I will like it better when I'm seventy. It was also one of those books that refers quite a lot to other works of literature and I did not know any of them well. I wonder if that impeded my affection for the book, too. I thought it quite entertaining and funny in the way John Irving books always are, with a story not quite as engrossing as most of his other books, but more than adequately engrossing and a better plot than most recently written books seem to have. I wonder why John Irving's mothers are so weak and unlovable at best. I wonder what would happen if he wrote a book whose protagonist had a mother as good as the average step-father in his books is. I thought that in some ways "In One Person" was a reworking of some of the material from "Owen Meany"--the parallels are pretty clear, especially in that both seem to be quite autobiographical. The protagonist of "Owen" is more forthcoming with his inner life however which makes a much stronger work. I thought "In One Person" was quite a brave book to write and admired John Irving for that as well as for writing a great story. If you'd like to borrow it, let me know.

For me, for tonight, I'm hoping for skill in my work, writing and weaving efforts. For you, I hope you are able to get the results you would like as well in your skilled endeavors.

Day 171 - visit to HHH

Today was a fairly busy day. I watched a movie with Ellie ("Clue" from 1985), went to Planet Fitness (interestingly, I started out on a different exercise bike than usual and this one thought that 67 year olds should have a heart rate eight higher than my usual bike. I switched once I figured this out.), had lunch with Tommie and paid a visit to Home, Health and Hospice. All fun, except for the short misadventure on the first exercise bike.

At HHH, I chatted with my boss and then went to the annual meeting. There were a lot of people there I knew--both employees and volunteers--and it was when people got their awards for years of service. It was lovely to see lots of people getting their pins--there were a lot of ten year, some fifteen year, a twenty and a twenty five year employee. There were also volunteers who got awards for more than 100 hours (the maximum seems to be about 600) and for lots of years of service. There were a lot of ten year volunteers.

It was nice to chat with people and to see everyone, to wear something besides cords or jeans and to be reminded that my professional life is really out there somewhere calling me. Well worth the trip.

In other news, I'm still thinking about the exact timing of my return to work. I am seeing my therapist tomorrow to check out that there is not some remnant of dysfunctional childhood affecting my decision one way or the other.

For me, I am still wishing for wisdom to make the right decision about going back to work. For you, I wish for wisdom in your decision making as well.

Day 170 - ETA for work

If you were to look at Maggie, you would be able to guess one of the things I did today--take her for a long walk. Ana and her beautiful shepherd came over to accompany us through the PEA trails and wallow in the muddiest gullies (to be accurate, Ana did not do any wallowing). A good time was had by all and, as everyone knows, a tired dog is a good dog. Other activities were a little weaving and cooking some more of the delicious Greek bean recipe. I also got my xkcd volume 0 collection of webcomics in the mail. I got one for a present for a non-reader of the blog and, well, one for myself too. I also went to an unnamed location to finish my shopping for Terry.

I was a little tired after our walk; I feel like I'll sleep well tonight and that I am building some leg muscles. Walking three miles in PEA on trails is much more tiring than walking three miles in town on sidewalks. It's also more tiring than riding the exercise bike at Planet Fitness although I don't think it's as good for getting my heart rate up.

The topic I'm thinking about most these days is timing of going back to work. Dr. Hill thinks I should go back in January and I feel ready to go back in a couple of weeks. I think the difference is that I am planning on going back very part time and building up and perhaps he is imagining me working more hours initially. It is interesting to talk with my medical friends about this issue: some of them think it will be fine for me to go back, even good, and some of them think I should stay out longer. I like my job (OK, I love my job) and really miss it and the people I work with. My team at HHH has been working super hard and will be glad to have an extra set of hands (so to speak) around. I also feel like an incredible slacker to be on disability for a single second longer than I need to be. I am grateful for how generous my Dartmouth benefits are and don't want to take advantage of their kindness either. On the other hand, I don't want to be stupid, to exhaust myself unnecessarily or to risk having to go out again two weeks after I go back in. Let me know your thoughts on the subject.

For me, for tonight, I'm hoping for the wisdom to choose the correct path for me. For you, I hope you are able to make good decisions too.

Day 169 - giving bad news

Today's activities: more weaving (another Christmas present), reading (back to the new John Irving novel) and shopping (a ceramic Dutch oven type thing and cookie trays). I decided to buy Patagonia's warmest jacket online and did some grocery shopping. I'd never been to Mckinnon's before, but had heard people rave. It was pretty fun; they have a lot of really delicious appearing things and the veggie sushi that I had for dinner was very good. Portsmouth is really turning into kind of a shopping mecca.

I did want to take this opportunity to talk more about second opinions. The official reason to get a second opinion is to get a "second set of eyes" or to have someone who is uninterested (in that they know ahead of time that they will not be treating you) make recommendations. It uncouples the interest in treating a patient (financial and emotional) from the exercise of judgement.

In my experience, the second opinion was extremely valuable--before we even had an appointment with the guy--because it forces one to get one's "files in order" and to go through the exercise of organizing one's story sufficiently so that some one else can make judgements. This can be useful, as it was in my case when John recognized the lab result which had been languishing in my chart for months. It can also be useful for the patient to put together "here's what I've been through in the past six months" together.

Other reasons for getting a second opinion are when you seem to have two opinions from your one treating doctor as was the case for one of my friends recently.  In person, her doctor said "you don't have cancer," but two hours later at home, she read her office visit notes and found that her diagnosis was listed as "ovarian cancer." This feels partially like my situation also. Initially, I heard "we'll have to think really hard about whether or not you need an auto-transplant down the road" and then to be hearing "no transplant; wouldn't even consider it" without a change in my situation. Gosh, even with only one doctor, I need a tie breaker!

I think if it had been framed more carefully, I would have been comfortable with the change in opinion. Let me tell you my thoughts. Many of you will be familiar with the standard advice for "giving bad news": get the right people there, control the environment, give yourself plenty of time, sit down, start with a warning shot, etc. Although this was not "bad" news, and with the proper mindset was even "good" news (getting the same result with less treatment is always good news), I think it would have been better delivered as a piece of "bad" news. Maybe the "delivering bad news" heading should really be called "delivering serious news." Something big about my treatment needs to be told to me carefully and a "warning shot" would have been most welcome; "I have some news to discuss with you that will probably surprise you" I think would have made all the difference in the world to me.

I know John was really surprised by my response. Most people when you tell them they are going to need less treatment than they thought are elated. I was not; I was puzzled, confused and worried. How could John have told ahead of time that this was going to be "serious" news that should be framed with care? In this case, the issue of how much treatment I needed seemed wrapped up with the issue of how likely I was to relapse and, thus, how likely I am to, well, continue living long term. I think it seems safe to say that anything that might seem connected to how likely is the patient to survive should probably be treated as "serious" news. I think I would have agreed to the statement if asked before my diagnosis, but I'm not sure I would have understood that it's not just "the cancer is spreading despite the strongest chemo your doctor has been giving you" that is a statement about survival. That leukemia; it's the gift that keeps on giving.

Anyway, I'm happy to be getting a second opinion, even if I get nothing more from it than knowing my NPM1 was positive. I am happy my friend is getting a second opinion.

I am hopeful that my second opinion will get set up soon and make me feel 100% confident about the course of treatment I end up doing. I am hopeful for you that you are able to feel confidence in your decisions and, if not, that you can figure out how to get the help you need.

Day 168 - 167 too

First, let me tell you the exciting things from yesterday. I started my day off with a quick trip to Manch to talk with my boss about going back to work. Kind of exciting, no? There is some controversy. Dr. Hill thinks I should stay out until mid-Jan, but I think I am ready to go back mid-Dec. I really don't want to feel at all like I am taking advantage of the incredibly generous benefits that Dartmouth has. I think I'm lively enough that I could start working soon. I'll keep you posted. It is always nice to remember my worklife out there waiting and to visit it so I enjoyed the trip in. It was also nice to see some of my old work friends. Mostly people are very nice and extremely tactful and happy. One person who must have been caught by surprise by seeing me said something that implied they were surprised to see me still alive! That Dr. Hill, he's a miracle worker.

Me, upright, in a blouse that Tanya made and gave me. You can also see how much hair I'm getting!

If you don't read xkcd, you should, but for sure, you should read today's. You could pretty much stop reading the blog now; I think he does such a good job of summarizing the whole "what's it like to be a young-ish person with cancer?" issue.

In other excitement, Diane and I went to the Beach Plum's indoor restaurant and I am ready to pronounce it every bit as good as the outdoor stand except for the view. Diane is doing well and it was nice to see her. We stopped at Matt's to buy fruit and he is also selling wreaths and Christmas trees now. Diane decorated a wreath for my family--very pretty and smells nice, too.

I can't make it a scratch and sniff picture, sadly

Ellie had play practice after school and on the way home, her friend asked if she could spend the night so--surprise--no kids! We went out to the Blue Moon and had a nice snack and drink. Ellie arrived home this morning not too tired nor too grouchy. After some sleepovers, people are so cranky you can't believe it.

Today the big news is that I finished my current weaving project. I wish I could show it to you because I am thrilled with it, but it is a present for a regular blog reader so I'll have to show you after Christmas.

Tonight is the Exeter Christmas parade which I love to go to, but some people in the house are too old and dignified to go to it anymore. Instead, Terry and I are going to go to a friend's house for dinner. For me, I will hope the parade goes well, with no frostbite or MVCs. For you? I will hope for a pleasant evening with no unpleasant surprises.

Day 167 - out carousing

Ellie was unexpectedly invited to spend the night at her friend's house so we took advantage and went out. I'm continuing to do well, and will post tomorrow. I hope you have a good night.