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In December I blogged about my less-than perfect experience at Washington Hospital Center, during my stay after breast reconstruction surgery. Since then I’ve received 2 letters of apology, including one from the pharmacy that took a bloody decade to dispense my drugs (why the drugs have to be dispensed by the pharmacy and aren’t more readily available to the nursing staff to be administered quickly to patients in the hospital is completely beyond me, especially when the drugs have been prescribed by your doctor.) Some responses sounded more sincere than others, but overall I’m pleased at the response and genuinely hope that improvements are made so that someone else doesn’t have the same lousy experience I was treated to.

That said, the nicest response came from the head nurse of the ward that I was in. Not long after my surgery, I received a call from her. She apologized, talked to me about my experience, and said that she was looking into the matter in the attempt to make sure that it didn’t happen again. It was a nice thing to do and she sounded genuinely concerned.

Ultimately, I’m glad I sent the letter. I would encourage anyone else in a similar position do the same. It doesn’t hurt to send praise to an institution where you’ve received exceptional care either. Up until the point that I was admitted to my hospital room, my experience in recovery at WHC was so good, I was already composing the letter in my head, between injections of pain killer and nausea medication.

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If you know me, you probably know I’m a Hillary supporter. I volunteered for her senatorial campaign until the whole cancer fiasco became too consuming to continue. I waited for her to officially announce her presidential run with great anticipation and was thrilled when she did. I won’t skirt the gender issue – I am extraordinarily excited about a viable female presidential candidate. Especially a Democrat who is wonderfully qualified, erudite, capable and can command campaign dollars. I really thought that the first viable, female presidential candidate would be a Republican. For once I am happy to be wrong.

I could keep gushing, but Dorothy really sums up my enthusiasm and general feelings on the election when she says,

“…your vote will be historic this year. And I’m not trying to influence your vote in any way; that’s your vote and yours alone. In fact, I really like Barack Obama. I’m tremendously moved by his words… if he wins the nomination I will support him 100 percent and put up yard signs and wear pins and vote with gusto. But that doesn’t mean I can’t vote with gusto for Hillary right now.

What has always bothered me about the way these campaigns have been framed is that one is transformational and the other is the same old same old. Certainly, the Clinton name is a standard-bearer in American politics. But why raise one candidate’s “otherness” above another candidate’s? In our nation’s 232-year history there has never been a black man or a woman president. Ever. So why pit them against each other? Both are extraordinary. Both would signal a massive seed change in the culture of our country.”

I’m also excited about Hillary’s recent endorsement by the American Nurses Association, and am of course, looking forward to voting next Tuesday.

30th annual meeting of the San Antonio Breast Symposium occurred in mid-December. The goal of the symposium is, “to provide state-of-the-art information on the experimental biology, etiology, prevention, diagnosis, and therapy of breast cancer and premalignant breast disease, to an international audience of academic and private physicians and researchers.” Interesting and innovative research comes out of this symposium every year. Some of the research that I found especially interesting this year:
A research group based in San Francisco has found a way to discover “lethal cases of DCIS (ductal carcinoma in situ) from ones that will never become life-threatening”. This could potentially prevent other other women in my situation from having a mastectomy or even a lumpectomy, which would be amazing.
new approaches to detecting early stage breast cancer and DCIS using high resolution MRI
the use of telemammography in rural communities
inaccurate application of the clinical breast exam (CBE)
High incidence of brain metastases found in patients with HER2 positive metastatic breast cancer
Survival outcomes in pregnancy-associated breast cancer

There’s lots of other interesting research presented at the symaposium. Abstracts and poster information is available at the site.

To whom it may concern,

I am writing to relay my experience at Washington Hospital Center on the December 20th-21st.

I was scheduled to have the 3rd step of my breast reconstruction with my plastic surgeon, Dr. Susan Otero, after being diagnosed with breast cancer in 2006 and undergoing two mastectomies at another hospital in 2007. Prior to my surgery date the WHC staff called me for my pre-op check-in and were also very attentive during the check-in process at the hospital. I was very pleased with the treatment and care I received prior to surgery and post-op during my recovery. Three nurses in particular, Birdie, Claudia, and Joan provided me with very high quality care. I was very pleased with the treatment I received in recovery.

However, the first major problem came when my initial recovery nurse, Birdie, called repeatedly to find me a room. My surgery was over between 2-3pm, and I recall being fully awake and able to be moved to a room around 5pm. Around 8pm I was moved to a different, larger recovery area and put under the care of Joan and Claudia, and told that I would be moved to my own room soon. After over a four hour total wait, I was finally transferred to my own room around 9:30pm.

By this time I had missed all the meal times and was hungry and tired and wanted to be in my own room, which should have been much quieter than the hustle and bustle of the recovery area. When I finally got to my room I was checked in and asked about getting food of some kind. I was told that the meal times were over. I pressed the issue as I was very hungry, not nauseous in any way, and definitely feeling up to eating a small meal. I was told that a boxed lunch could be ordered for me. In the interim, my nurse brought a large cup of juice.

Around midnight no food had arrived and it had been about four hours since I had received pain medication. Around 12:30 when my nurse, Jillian, came into my room I told her that my pain was increasing and asked for more pain medication as well as lozenges for my throat which was very sore after being intubated. She said she would order the medication and told me that no meal had been brought. She eventually found some cereal and milk for me, which was kind of her, as the food that was ordered apparently never arrived.

At approximately 1:30 I received throat lozenges. Around 2:30am I still had not received any more pain medication and my incisions felt like they were on fire. It was almost impossible for me to rest. I had not been seriously uncomfortable post-op until around midnight when I had asked for the medication and as I stated before, had been very well cared for. In recovery I was asked about my level of pain and the nurses responded appropriately. Therefore I went from being very comfortable to being in an unacceptable amount of pain for an extended period of time even though I knew that my surgeon had ordered Vicoden for me during my recovery in the hospital. I paged my nurse. She said that the drugs hadn’t arrived from the pharmacy yet but if they didn’t arrive in 10 minutes she would go check on them herself. About 15 minutes later she came with the pain medication, apologized and she told me that it would probably take me two cycles of drugs to really feel better since the drugs I had received so much earlier were almost completely out of my system.

Around 6am my surgeon arrived and told me that I would be discharged that day, which I had expected. My nurse followed shortly thereafter and brought another round of medication. I was feeling much better by then and was awaiting breakfast since I had yet to really eat anything. When breakfast did arrive, I discovered chicken broth, jello, and more juice even though I had already eaten solid food and had requested a vegetarian meal. I was not able to eat any of the food that was brought for me. I paged a nurse and a tech arrived. When I told him about the problem, he got the person who was delivering the meals and explained the situation. The delivery person said that he had an extra breakfast and would bring it to me. It never arrived. By this time I wasn’t surprised and simply wanted to get out of the hospital so I could recover properly.

I am amazed that I was able to receive both the best and the worst care I have ever had in a hospital at the same facility in 24 hours. My diagnosis has necessitated six surgeries in the past 14 months and I have never had to wait so long for medication or food in any hospital – especially things prescribed for me by my doctor and/or things that I could have had at home. I would have fared far better if I had left the hospital and gone home after my time in the recovery area, which is unacceptable. I am at a loss as to the reason why I was not able to get the medication prescribed for me, in the hospital. Considering that during previous recoveries in other hospitals I had serious issues with nausea and required far more pain medication, my experience at WHC does not make me feel confident that it could provide me with a level of care that would keep me well and comfortable. If it was so difficult to get the medication specifically prescribed for me, I can only assume that if I became nauseous or needed a non-prescribed drug right away there was no way I would have gotten it.

While I appreciate the kindness and dedication of the majority of the WHC staff which I came into contact with, overall I am appalled by my experience there. As portions of the WHC were rated among the US’s best this year, I have to believe that I experienced huge flaws in an otherwise well-functioning system. Nonetheless, I consider my experience to be unacceptable and I feel I would be remiss if I did not relay the details of my situation in the hopes that the system can improve and others can enjoy at least a modicum of good quality care that was missing in the majority of my experience at WHC.

At 15 Rob Dyer had the idea that he’d skate across Canada and the US to raise money for cancer research at Princess Margaret Hospital, in Toronto, Canada. It was dismissed as crazy.

Now at the age of 23 he’s already skated across the US, is skating across Canada this year, and is planning to skate across Australia in 2008. Skate4Cancer has morphed into it’s own organization. Rob and others speak at schools, organize concerts to raise money, and have launched a a line of logo t-shirts to keep the funds coming in so they can keep moving. In February of this year they launched the Cure is Knowledge campaign to push the Canadian Government for better prevention through complete blood tests, check-ups, and education in schools.

Over the course of a few years Rob lost two grandparents, and in 2000, his mother to cancer. It’s easier to sit back and do nothing when we’re affected by what is often unexplainable disease and devastating loss. It’s certainly easier than taking a deliberate, expansive, and creative approach to making things better, in this case, mile by mile.

a lunch of fruit and sushi in a takeout container
So I’ve taken two days off of work to tend to Drs. appts. They’re all over the DC metro area and leave me feeling drained and often in pain so, I figured I’d just give myself the space to have 4 Dr. appts in 2 days and let that be enough to occupy my time.

I also haven’t been online in 2 days which is making me a bit nutty. (Yeah, yeah, even more so than ususal.)

The docs seem to think that everything is going well, although I’m getting a little bit of conflicting information. It’s this kind of thing that I’ve come to the realization is inevitable with my diagnosis – early stage, low to medium grade cancer, no known genetic predisposition. Pretty good in terms of a Cancerland diagnosis, but combine it with my age and it seems to make all of my doctors scratch their heads a bit. It kind of makes me feel like a car that’s making a weird noise, or has a part that the mechanic knows will eventually need replacing, but isn’t sure when. Apparently, I could go 100,000 miles or 5,000 and be fine “as is” but no one seems to know for sure. WTF?


2nd set of jackson-pratts II

Originally uploaded by l@in.

I got my second set of drains pulled yesterday. This time they were in for a week.

As they were being pulled (as they simply, literally undo the stitches and yank them from your body) were, “Fuck. God Damn. Motherfucker.”

Tonight I can finally take a shower. You can’t imagine how excited I am.

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