m00se

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.

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.

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.

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.

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.

nick & nora cow slippers

Originally uploaded by l@in.
After my second overnight stay in the hospital this year, I think I’ve figured out what I need to make myself comfortable without over packing the way I did for the first mastectomy. I thought I’d share just in case someone else needed to make similar plans.

• trash magazines. - lots of pictures and and little written content is best. this time i think i took curve, the fall fashion issue of elle, northern virginia magazine, venus zine (for the MIA article), and bust. i just wanted something to glossy flip through. as the time went on, i was able to do a little reading, but very little.
• ipod - i didn’t end up actually listening to it this time, but last stay when i was overwhelmingly sick, i don’t think i could have done without the distraction. the important thing is to attach it to something since they’re so small so they don’t get lost in the sheets, fall on the floor, etc. i used an athletic strap to attach it to a stuffed animal which also served as an arm prop. it worked rather well.
• lip balm - being intubated left my lips incredibly dry. one kind nurse even applied vaseline to my lips in recovery. i used the lip balm a lot while i was in the hospital.
• slippers with treading - the hospital usually provides slipper socks with plastic treading, but i usually find them ill fitting and scratchy. this time around i got cute little slipper sock things kinda like these with rubber tread that were nice and soft and warm and made me really comfortable. the nurses all loved them too.
• snacks from home - last time i was so sick i didn’t eat anything until the next morning which, i think, was some sherbet. this time i actually felt like eating, at least a little but was never given any menu selections so every entree was meat, meat, meat, which just made me feel ill, especially the smell of it. i think i ended up eating sherbet and squash one night and some frightening wonder-like wheat bread for breakfast. i had packed joanna some snacks - nuts, seeds, dried figs and crackers and ended up eating some of those, which made me feel much better. pete also brought me a 2 liter of diet ginger ale, the contents of which i drank almost all of before checking out the next morning.
• This may be mastectomy specific, but for the trip home, a button or zip-up shirt to wear as well as pull-on pants and slip on shoes were invaluable. For the car ride a pillow was essential to put between the seatbelt and the foob (fake boob). it still hurt, but certainly lessened the impact, especially over bumps, around sharp turns, and at abrupt stops.

It should go without saying that it’s important to develop a nice rapport with your nurses and nurse technicians if possible. That said one shouldn’t be afraid to ask for things that you need - that’s why the nurses are there. I will say that most of my nurses were kind and attentive, especially the night nurses who happily untangled my IVs from my pole when I returned from late night bathroom trips, poured me endless cups of ginger ale over cups of ice they supplied, and brought me extra blankets.

Just a little food for thought for making it through a hospital stay without losing your mind.

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!

essentials

Originally uploaded by l@in.
As you may or may not have known, I had surgery again yesterday. This time I did a really bad job of communicating to people what was going on, so if I’ve left you out of the loop, I apologize now. Work has been incredibly busy, however well it’s going, but I’ve also logged close to 50 hrs. a week or more for the last 6 weeks or so. I know that’s normal for some people, and if it is, my hat is off to you. This kind of schedule left me exhausted and feeling as if I had little time to myself, which sucked especially right before surgery.

Anyway, yesterday morning I had a prophylactic, simple mastectomy on my left breast and a tissue expander was placed, just like the last time. Since there is no known cancer in this breast, a sentinel node biopsy wasn’t done. I think this combined with better pain and nausea management left me feeling much better after the surgery and with a far greater range of mobility. Pete and Mark actually came to visit last night at the hospital, which gave Joanna a nice chance at a break from napping on an uncomfortable looking chair in my room, and they were treated to a puke-less evening, which was unexpected.

Making the decision to have a prophylactic mastectomy wasn’t an easy one, and may seem a bit draconian. Getting diagnosed with even low-grade breast cancer at 28, genuinely freaked me out. Especially considering that I had related symptoms at 26. Receiving negative results from my genetic BRCA1 & 2 testing made me more nervous than anything. It meant that I probably wouldn’t need to make any drastic decisions about removing my ovaries, but it did leave me with no reason whatsoever as to why I had breast cancer at such a young age. It made sense to me to try an lower my risk as much as possible, and a mastectomy on the seemingly healthy breast accomplished that. There was actually an interesting article in the NY Times about this process last Sunday.

So now I’m home, and anticipating a whole foods run for dinner tonight. I’m actually feeling pretty good, and considering how I felt last time, I’m surprised by how functional I am.

In other news, it’s been a big week as I turned 30 on Wednesday - eek. Thanks for coming out to the party at Be Bar, and for all the gifts and good wishes. And a special thanks to Allison who trekked all the way in from Chicago for the weekend. It was a real treat having her in town. Among other things, Joanna gave me seasons 3 & 4 of Sex in the City. I bet they’ll be close to finished before the weekend is out… off to it!