Draining Drains

I did not appreciate until the drains were out, how draining they were. After my Monday appointment, the drains became very painful. The kind of drains I had are called Jackson-Pratt drains. Here is a picture of a drain laid out on a table. Note that the bulb is about 3.5" long, so you can get an idea of how long the white strip that is inside you is. Looking in the mirror, I could see that one of the drains had started to slip, so that you could see the tube/drain junction. Any move had the potential to cause a sharp pain: it was like an invisible sadist was tailing me and randomly poking me with a sharp implement. I was still not meeting the drainage guidelines on Wednesday, so we waited until Thursday to call and schedule an appointment for removing the drains.

Fortunately, we got an appointment at 11:30 to get them out. I took two perocet to be prepared for the inevitable pain. We arrived, had a brief discussion and out they came. OUCH! But after they were out, everything was OK. No more invisible sadist following me around. I really felt so much better, it is hard to describe. I was just left with two holes where the drains came out. It either looks like I was bitten by a narrow-jawed, thick-fanged vampire, or that I was shot twice. As soon as they scab over I can take a real bath!

Drains

Colin had joked with the Doctor about doing a spreadsheet with my drainage. When we went to the appointment on Monday where we were told that the drains were staying in for another few days, he gave us a hard time about the messy hand-written sheet we had. The chart is Colin's stab with an excel spreadsheet and a linear fit.

I managed to put all the data points in MATLAB with relative times and also calculated the drainage rate for each interval. I used MATLAB's Polyfit function to fit a second degree polynomial to each set of data, just for grins.

Surprisingly, the Doctor said he has just had another patient diagnosed with angio-sarcoma of the breast. Primary angiosarcoma should be a once-a-career finding for a surgeon, so to have two within two months is definitely an outlier.

Ruth Ann & Colin

Convalescent Activities

I have been doing puzzles, reading, watching TV, and actually working some at my computer. Colin was getting me out routinely for walks around the block, but the last few days have been too rainy and miserable. I cannot do any one thing for any length of time before I have to do something totally different or lie down. I am getting more and more stamina back to allow me to sit at the computer. This means I will eventually be able to sit long enough to really do some productive work.

I am working away on the various Sudoku puzzle books I have. Just when I think I can fly through a puzzle, I get to one that needs a different approach. I like the Kenken puzzles in the globe. I also got a book of Sudoku and Heyawake Puzzles that I took to the hospital (I cannot believe that I thought I would be able to do anything there.....). Heyawake are logic puzzles with a life of their own. I am working my way through the logic, but haven't finished one yet without a mistake. I have figured out that there is at least one unwritten rule.

So far, I have read "The Last Lecture" By Randy Pausch. My sister had sent it at Christmas, so I dug it out to see what it said. I recommend reading it -- now. It is much more to do with how to live than how to die. Of course, he is an engineer, so I enjoyed his very straight forward style. it is a quick, easy read.

I am currently reading:

Having Our Say: The Delany Sisters' First 100 Years

They were two really hot tickets. Born in the 1890's, the book was written when they were about 101 and 103. They lived through a lot of American History, and they have some great insights. This would be a great family night "read aloud" book since it is written in a very conversational style. They are very matter of fact about the difficulties they faced over the years under Jim Crow laws. I hope to be like them when I am 100.

The Island of Lost Maps: A True Story of Cartographic Crime
by Miles Harvey. A tale of a guy who systematically stole maps, books of maps, and other treasures from libraries all over the country. While he is not the only thief to target maps and rare collections, he stole more than anyone else. This is more than just the story of the crime(s), but also a trip through all sorts of things I never knew there was to know about maps. One tidbit: it is thought that Sir Frances Drake actually ended up circumnavigating the globe because he had stolen maps from Portuguese ships along the South American Coast. Since there was a price on his head, he didn't dare go back by the route whence he came. Luckily, some of the charts he stole had enough information to get him across the Pacific.

Big Stone Gap: A Novel (Ballantine Reader's Circle)
by Adriana Trigiani. I am not too far into this yet, but the premise sounds interesting. A single woman finds out she is not who she thought she was.

Why so many books you say? Well, I have gotten into the habit of reading the book I can reach. So I have a book in the living room, one by my bed, one at the dining room table.... Reading at the table is easiest, since I don't have to hold the book.

Wah! Setback.

In order to reduce swelling after surgery like mine, drains are inserted. They have a bulb at the end to collect fluid, and when the drains are emptied, you squeeze it before re-plugging it to provide suction. In order to get them out, I needed to have less than 30cc. of drainage each day. It was clear that I was not going to meet the milestone for my appt. on the 19th of June, so I was re-scheduled for Monday the 22nd. He took a look, looked at my drainage record and said three more days! Sorry to whine, but wah! I was so hoping these things would come out. I really cannot move my arm much until they do. I am not allowed to drive until they come out. Wah, Wah, Wah!

Engineering Humor (1) June 20, 2009

Ok, you have been warned! This is engineering humor ;-).

I had been avoiding touching my chest since the skin is very sensitive. But the other night, as I was struggling to get comfortable in bed, my hand happened to fall squarely on my chest where my breast had been. The image that immediately came to mind was the Arizona Meteor Crater.

And now a reminiscence:

Now, this didn't really come totally out of the blue. When we were in Germany, we had gotten a National Geographic film out of the library about Comet Shoemaker-Levy-9. Eugene Shoemaker took his family to Nördlingen Germany to look at the local rocks to see if the area was a meteor rather than volcanic crater. By studying the stones of the church, which contained Suevite and Coesite, he proved his point. We watched it this film many times, and it prompted us to visit the Ries Crater and museum at Nördlingen Germany. I climbed the Daniel, built with rocks containing suevite while pregnant with Noelle. The night watchmen in Nördlingen, still call out the all clear "So G'sell So" (skip to the end of the film) at 10 o'clock each night from the post at the top of the Daniel.

Mastectomy -- Colin's view (9 June 09)

After RA was prepped (changed, IV, etc.) I was able to go back and sit with her in the pre-op waiting area. Eventually it was time for her to go to nuclear medicine for the radioactive tracer injection (used to find lymph nodes for the sentinel node biopsy). I was told there was no place to wait* with her at nuclear medicine, so I did not go with her. She was gone a long time, so I waited outside in the day surgery registration waiting room. I saw her come back from nuclear medicine and went back with her to wait for the surgery.

We had good visits with the anesthesiologist and the surgeon while waiting. The surgeon had a medical student with him, and the pre-op discussions indicated he had suspected the lump was not normal due to its "feel".

RA was taken back for surgery around 1135. I went to the waiting room, pulled out my laptop, got online and worked for 2 hours while watching her progress on the status monitor. When her status changed to 'closing' I started shutting down and putting away my laptop. Overall, she was in surgery for about 2.5 hours. The surgeon came out and chatted with me while she was on her way up to recovery. He said everything went fine. He took all the skin he could, and the base tissue looked good (intact, not impacted by the lumpectomy, with no visible signs of a tumor).

I watched the status monitor to see when I could go up and join RA in recovery. Eventually I was paged, with a request to go to the day surgery registration desk. I went up, and was told RA was OK, but it would be about 30 minutes before I could go back. I just looked at the recovery nurse and said "No, not acceptable". I said she needed me there, this was NOT run-of-the-mill breast cancer, and I would be quiet and stay out of the way. She let me in.

We had arranged with the pre-op nurse for me to go back ASAP after she came back from surgery, but that deal was obviously not honored. At some point I must do a post dedicated to how the medical system is setup to handle "average" patients/spouses, not those of us who are a bit more proactive and knowledgeable. I suspect they imagined they were doing me a favor by hiding the harmless, but potentially "scary" post-anesthesia side effects like the shivers.

RA was barely awake, but was responding to questions about pain as they tried to balance IV pain medication and her recovery from general anesthesia. Her vital signs were very good. The O2 sensor was flaky, which meant the monitor kept beeping. Poor design, and from my view unacceptable if the patient really needed to be monitored (the nurse mostly ignored the monitor due to the O2 sensor). I stuck my hand through the slot in the bed railing and gently stroked her left arm. It seemed to help some. Eventually she was moved to a hospital room.


* Which I found out later was incorrect, and she did have a long wait for the injection. Oh, well. Sometimes I believe what I'm told without pushing back....by now I should know better.

Mastectomy (9 June 09)

The plan for the day: Complete mastectomy of the right breast with sentinel node biopsy.

We got up and had a relatively normal morning before heading off to Lahey North in Peabody for my surgery. I enjoyed my black coffee during the drive. With an 11:45 procedure, I was allowed to have clear liquids including black coffee up until 8:30. Got there for the same old procedure... but this time, I had a detour through nuclear medicine to get the radioactive tracer injected. This, along with a blue dye, would provide guidance to the surgeon to the lymph nodes to be removed. For a change, I had a hospital gown with the slit offset to the side. No running around with my bottom on view. It also had snaps at the shoulders. Made procedures easier. Not that I am exactly shy or modest, but I have found that acting shy and modest keeps others from being embarrassed.

I had a long wait before and after down at nuclear medicine. They had told us that Colin could not come down with me "since there was no room for him". This was true for the 10 minutes I was in getting the (VERY PAINFUL) injections of the tracer*. The tech who did my prep was "due in two weeks", so how radioactive can the stuff be? But, for the other 50 minutes before and afterward, I could have used the company. The area was under construction, and the waiting room was the hall. At least I had reading material.

When I got back up, we talked to the surgeon and the anesthesiologist about what was coming up. We re-discussed the sentinel node, the opinion offered at Dana Farber, and the fact that we disagreed with DF. We went into this fully aware that a negative reading in the nodes does not necessarily mean all is good, but that a finding in the node would definitely provide information (bad....). We discussed follow-up, and his contact at Mass General recommends radiation. We may get a second opinion on the oncology side, just to provide more interesting statistical problems for Colin and I to solve;-). (Notwithstanding, that the sample sizes for primary angiosarcoma are too small to provide any statistical confidence). The anesthesiologist was the same doctor I had for both my hand surgery in 2007 and my lumpectomy four weeks before. It was nice dealing with the same doctors, nurses, and the overall situation for this surgery. I can definitely recommend the day surgery center at Lahey North. Finally, the time was at hand, and I hopped on the gurney, they connected the IV, put in some sedative, and we were off. I remember getting into the OR, moving to the table, and then it was lights out.

I woke up with the worst case of the shivers you can imagine. I didn't particularly feel cold, but they piled warm blankets on me and gave me demerol. I felt like the weight of the blankets did more than their warmth. I got some more pain medication through the iv. They were doing all sorts of things, making notes, etc. And then Colin came in and off we went to my hospital room about 45 minutes later.

*Note to anyone who will be having this, ask for EMLA so it is less uncomfortable.

Oncology Consult (8 June 09)

We met with an oncologist and surgeon from the Dana-Farber Sarcoma Center. All records related to this had been forwarded to them. After filling out more reams of paperwork, meeting the administrator, meeting the PA to go over the current details, we finally met the oncologist. He had a very laid-back style. We really liked him and his "bedside manner". According to him, Dana-Farber's current thinking is to watch and wait with primary angiosarcoma of the breast. There is no evidence that chemotherapy will prevent a recurrence. They believe it is better to scan frequently to catch any reoccurrance as soon as possible. He did say "...but if you will sleep better by are doing chemo (aka doing something), we can do that too.." My retort was "first do no harm". We did take their literature describing the various chemo options for reference.

Eventually, the surgeon joined us with his medical students. His bedisde manner was less...polished. We discussed the planned surgery. He thought the sentinel node biopsy was "totally unnecessary surgery". We did discuss what he thought was appropriate: removal of as much tissue border, including skin, as possible and removing the fascia on the underlying muscle. Colin noted everything for a final discussion with my surgeon the following morning. Once again, the best possible news that there could be, given the situation.

Good News

At the end of the day yesterday, my Doctor called with the pathology results.  There was a residual tumor of about 5 cm, but the smallest margin between tumor and the edge of the excised tissue was 2 cm.  This was exactly what we were hoping for.  The angiosarcoma is still lowgrade.  There is controversy over whether grade means anything with angiosarcoma, so we will see how I do.  According to the Dana Farber folks, this mean no chemo,  just watch and wait.  We are still uncertain as to whether we will look for another opinion.  

Some of the flowers...

Noelle's Breakfast

We slept in today. The kids were great, and did not make too much noise.

Noelle even fixed her own breakfast: tuna salad. Yes, tuna salad. She opened the can, cut up celery and onion, put in mayo. And then ate all of it!