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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.

better than champagne

Originally uploaded by l@in.

Here’s to a cancer free, drama free, boring, average, normal, yawn-worthy, surgery-free 2008.

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.

holiday slippers for the hospital

Originally uploaded by l@in.

feeling good.

oop! bagels are here. more later.

me.  had a 100cc expander fill (about 3.4 fluid oz.) and i’m at work.

had i not seen the actual fill done, i would be convinced that someone inserted a grapefruit into my chest during the night.

that is all.

sorry for the lack of posts, but the title pretty much feels like that’s i’m doing. if it’s possible to have a negative level of energy and not actually be dead, i think that’s how i’d describe my current state of being. i know i owe calls and emails and drink/dinner/coffee dates - just let me give a blanket apology right now.

we’re halfway through breast cancer awareness month. you all know i’ve got plenty to say about that, but clearly do not have the energy to do so. it’s ruminating though. as a teaser, i have noticed that lots of the “big” media and “big” women’s mags have coverage, but lots of the feminist or lesbian, and sometimes even health mags geared towards women aren’t mentioning much which bugs me a bit.

Time magazine did a kind of interesting set of pieces on breast cancer which might be worth checking out.

more later. i promise. i’m told my energy level will eventually return. in my current headspace, i have trouble believing it. so, it’s just like my last mastectomy. :)

Today I met up with my Castle Connolly, top rated plastic surgeon, for the 2nd post-op visit. She asked me how I was doing with the pain. I was honest and told her that when I was able to rest whenever I wanted during recovery, I was down to taking the pain meds from every 5 hours to every 8 or so, which was a big improvement. Yesterday I had some appointments and errands to run downtown, so it was kind of my test run day to see how I’d do on the metro, walking all over the place and generally having a more normal day than I’ve had since surgery. As I informed my Dr. this pushed me back down to needing the meds every 5-6 hours again. I told her that I had been doing pretty well but refused to suffer in pain when I didn’t have to. She quickly agreed that there was no reason for me to suffer through it needlessly and that I was smart enough to figure out when I didn’t need the drugs again. I also told her that I’d been taking some darvocet that I had left over from severe back pain that I was experiencing this summer which seemed to knock me out and make me feel a little more out of it which let me sleep (otherwise I would wake up in the middle of the night for meds, or sleep very badly and wake exhausted). So she gave me a prescription for that as well.

Since I was still in pain, she said that she’d wait to fill my tissue expander until next week. I said, “No, no, no!” as I had geared myself up for it, had taken some anticipatory drugs and had the rest of the day off. She asked if I was sure, and I said, “Absolutely - let’s do it!” She called my favorite nurse, who gathered the needle and the saline bag and then used a magnet to find the metal valve in my expander so the saline could be inserted. When she got to 100ccs she asked me if I wanted to stop - I told her, I’m ready, I’ll take as much as you’re willing to give me. She stopped at 150ccs, which, according to my understanding is quite a large expander fill and if I have the conversion correct it’s about the equivalent of about 5oz. So now there’s essentially just over a serving of juice that’s been injected to a silicone container which sits half under and half over my newly split pectoral muscle supported by alloderm, and a whole lotta stitching.

To give you an idea of what this feels like, it’s as if someone has placed a concrete block on the left side of my chest, and occasionally pokes the outer perimeter with an ice pick. The actual filling process is less intense, but still increases according to the amount of fluid being inserted. If you’re familiar with the Peaches song Operation, where she all but screams, “I can take it!”, that’s what was going through my head towards the end of the fill.

Now I’m safely at home with a nice cocktail of valium, vicoden, and darvocet-n coursing through my veins, and thanks to Joanna, sushi waiting for me in the fridge. You should be impressed that I was able to type this out at all.

jackson-pratts

Originally uploaded by l@in.
woo hoo!

I went to see the wonderful nurse at my plastic surgeon’s office and she pulled pulled my jackson-pratts. By the time I went in today I was draining well under the 20-30ml of fluid in 24 hours required to have them removed. Hopefully there won’t be a fluid build up like last time which required emergency drain re-insertion. I feel like in April I had them removed 5-7 days post mastectomy. This time I had them in for 13 days so, cross your fingers.

I still can’t shower until Saturday morning (it’s worse than a camping trip) but it feels amazing not to have this constant pulling around the exit area of the drains and the stitches that attached them to me. While there’s still pain, it’s no longer constant. This is quite a boon, not to mention that I no longer have to find places to hide them in my clothes when going out in public. This time, the drain tubes were long enough that I could tuck them into the back or side of my skirt or slacks, which just made my ass look lumpy.

Again - it’s nice to have them out.

it occurs to me that no one would ever respond to a person who’s face had been disfigured in, what say, a car accident that at least they got a free face lift out of it. however the “at least you got a free boob job” seems to be a surprisingly frequent response to women who’ve had reconstruction after breast cancer.

fortunately no one has ever actually said this to me within my range of hearing or in conversation, but if they did, i promise that my response would not be pretty.