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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.

The last few weeks have been a little whirlwind with starting a new job and finally getting back to feeling more normal after my last surgery. I’ve recently gotten a gym membership and have been going off and on for the past three weeks. Even though for the first week and a half I was only walking on the treadmill, I developed a little bruising and would be in so much pain the day after that I had to go visit my plastic surgeon. Apparently all was well, but the internal sutures hadn’t dissolved yet, so were causing all the trouble. My surgeon gave me a refill on my Valium prescription to take as needed. The combination of that and the dissolving sutures (you can seriously tell that they’re slowly going away because they’re poking out of my skin) has allowed me to exercise more often and for a longer period of time, which at this point, feels like a luxury. The next surgery is scheduled for December 20th - looks like I’ll be getting new boobs for Christmas.

This weekend I saw Ani Difranco at the Meyerhoff. It was a great show. I love to see how she adapts her show to the space in which she’s playing. I also got to eat at one of my favorite Top 5, Top 5 restaurants - the Helmand. I haven’t been there in years, but the food is still amazing. Four of us had bread, appetizers, an entree, wine, and Turkish coffee for $30 a person including tip. It’s quite a deal.

Speaking of food I seem, to have developed a slight addiction to pretzel dogs. If you like tofu dogs, you should really try these little things. They’re quite yummy, and relatively healthy. It’s too bad that I’m not supposed to have a serving of soy more than once a week or I think I’d be eating them all the time… now that I’m thinking about it, maybe it a really good thing I’ve got to limit my soy intake…

I think I’m fighting off a cold, so I’ve got the first pot of vegetable soup of the season on the stove, and I think it’s off to bed with me early tonight.

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.

Tonight a friend of mine brought us a really lovely dinner of tomato basil soup and a zucchini and rice dish. The food was wonderful and I do love the camaraderie of breaking bread together. There is something wonderful and neighborly about sharing a home made meal.

I slept a ton today. I woke up for pain meds around 9, fell back to sleep until about 1 when it was time for more pain meds and then took a nap again from about 6-7:15. I really believe in the restorative powers of rest. Fortunately it’s getting easier for me to get in a comfortable position for sleeping which was really difficult the first few days. I still rely heavily on the pain medication, but I’m definitely improving, which is great.

I ran across this feature on CNN about Lindsay Avner who, at 23, made the decision to have a prophylactic bilateral mastectomy based on her extensive family history of breast cancer. If you can stomach the wide range of comments included with the feature it illustrates the controversy around this procedure and demonstrates how frankly clueless many people are about it. The comments range from making statements that her decision was “paranoid” to others who think that the decision was “…actually quite easy. Not only is she safe from cancer, but now she can have the perfect and paid for breasts.”

I wish I could say that I was surprised or amazed at these responses but quite honestly they simply make me sad. For another human being to simply wave off a gut wrenching decision made in an effort to live a long and healthy life is mind blowing to me. A breast cancer diagnosis at any age is abjectly terrifying and life altering for you, your partner, and your friends and family. Every new doctor appointment, every scan, every excursion under the knife, brings with it the potential for a worse diagnosis, more invasive treatment, more of your previously normal life being ripped from you and replaced with more time spent simply trying to be well. The decision to have reconstruction was anything but easy. I can tell you I would much rather have the natural parts of my less-than-perfect body, because it was mine, because it was real. The lack of genuine thought and feeling behind these kind of statements is unfortunate at the very least and at it’s worst extraordinarily callus.

Today has been spent lazing around for the most part. I’m still feeling pretty good but the pain management gets trickier. The pain is constant and present even with the vicoden and valium. Last night I had a brief meltdown while trying to go to sleep, it seems no amount of pillow arrangement would do the trick and no matter how I laid it felt as if my left pec muscle was being ripped in half. As a result I’ve upped the medication dosage to just a little more than prescribed, and am just trying to distract myself until I fall asleep. This usually entails falling asleep to something on TV. All in all it’s still not bad, but my goodness, moving around, is certainly an exercise.

I think I mentioned before that I was very upfront with my anesthesiologists before this surgery. I let both of them know that I was in an unacceptable amount of pain after the last surgery and had a completely unpleasant experience in the recovery room where, according to my dim recollection, I had to practically beg for pain relief. If this little discussion didn’t help, I’d be shocked because my experience this time was completely different. I felt as if I was taken very seriously in recovery and treated very, very well. One of the recovery room nurses recognized me, fed me ice chips, and provided me with vaseline for my dry, post-op lips.

I find the approach to pain medication by different medical professionals fascinating. My surgeons have always taken my discussion of pain seriously and have never denied me pain killers when I’ve requested them. My anesthesiologists have always behaved in a similar manner. That said, in my last hospital stay it was interesting to get the reaction of various nurses to my telling them I was in more pain than I wanted to handle. A few times it was explained to me that I only needed to click on my morphine pump when I needed it and the drugs would only be released every 20 minutes. I thought it curious that someone who had just underwent major surgery was expected to watch the clock and click appropriately and/or wait a little while to see how the pain was before clicking. My strategy was to click the button when I remembered. Morphine really doesn’t make you the sharpest individual, so I clicked when I could.

Later, after my doctor gave me the go-ahead to leave, I asked the attending nurse about my prescriptions just to make sure that I had what I was told I would get - an antibiotic, vicoden (for pain), valium (as a muscle relaxer for the tissue expanders). First she said no valium - but she’d double check. Then when she did find the prescription for my valium, she 1) assumed that I was taking it regularly pre-suregery, and 2) couldn’t understand any reason why I’d be taking it other than to put me to sleep. At which point I had to explain the tissue expanders, and the muscle spasms which result in trying to get your muscle and tissue to make room for a foreign object.

There were other instances too with various nurses who didn’t seem to have a clue as to why I was there and what I needed. I was asked to hold things, which I couldn’t really do. I was given a monitor on a pole whose wheels didn’t work properly so it was almost impossible to move by myself (I requested and received another). Finally when I left the technition who “helped” me get to the car, grabbed on to my left arm tightly to maneuver me around the wheel chair foot holders which she placed in my way. When I asked her to please not touch that arm, she watched me struggle with the car door.

This is less a rant against nurses and more of my amazement at a system that permits those providing immediate care to those who are almost wholly dependent on them to have a very limited knowledge of the situation of each patient. I had some wonderful nurses each time I’ve had surgery (5 times in the past year in fact). The night nurses that I had this time around were especially attentive and sweet. Overall my hospital experience was good, but there are aspects that make me a little nervous, especially if I were less coherent than I’ve been while staying in the hospital.

That said, I’m still enjoying sex in the city, and playing the sims 2. Joanna went on a bagel run this morning so I’ve had my weekly lox and bagel fix. yippee!