recovery – day 5

day 5

Originally uploaded by l@in.

Recovery has been both better and worse than I anticipated. I think I already mentioned that the implant was removed (and reinserted!), which resulted in the increased level of pain that I’m experiencing. And again, the drain didn’t help (although, I know not having it could have been disastrous.) However, I am feeling better quickly. My range of motion is pretty good and while I’m not trying to lift anything of any significance, I can pick up a glass or a plate in my left hand and carry it a short distance without an issue, which is nice. I’ve even been able to knit small projects! I listened to my Dr.’s exercise mantra, “you can walk”, and did 30 minutes on the treadmill today at a really slow pace. It’s better than nothing, and I’m so happy we were able to get that before the surgery.

I’ve done this enough that I feel like I kind of have a system. I try to do whatever I feel compelled to. If I feel like laying down, I do. If I feel like I need more pain meds I take them (and if what I feel I need seems unreasonable, I know there’s a problem). If I think I can tackle some house work I try and if it doesn’t hurt, I do it, and if it does – forget it. It really helps that I’ve been able to work from home this week, and can hang out with the laptop in bed if I need to.

And if I’m hungry, I eat. This is probably the most complicated thing for me because I do love to eat. I’m also trying to be healthy for many reasons, one of which is because I’m, of course, concerned about the cancer returning. So I try to eat healthy, exercise, and do all the things you’re supposed to do to stay in optimum health. Did I mention I love to eat? And I love sweets? I know when I’m exercising a lot, I feel like I can cut myself some slack, but now that I’m struggling with a 28 minute mile (ugh! it hurts just to type), I don’t really have that luxury. So I stocked the freezer with pasta sauce, chili, and soup, and Joanna has been great about getting me out of the house to find yummy healthy things with the occasional flake (like a delicious chocolate cake from whole foods). I am looking forward to being able to handle the damn blender again – I miss my green smoothies!

With Cancer You Get Smoothies

lunch smoothie

Originally uploaded by l@in.

The other day 1L asked me some questions about my smoothie making. I thought they were pretty good so I thought that I’d just write about them here, instead of responding on my flickr stream. I didn’t really start making smoothies until the cancer thing was really under control. I wanted to eat more healthfully which was something that I’ve been trying to work on for the past few years, but my health issues really kicked this into high gear. I started reading about people who were using nutrition to combat cancer, mainly macrobiotics. I feel like I’ve made a lot of progress, but it’s an ongoing thing. Joanna and I did a week of raw eating last summer. I’d definitely like to do that again. I don’t think I could do it all the time but I think it’s a good break from normal eating and gets me back into eating more fresh, unprocessed foods. I still eat too much sugar and sweets in general. That said, the last time I saw my doctor, he said my cholesterol was in a really healthy range and I’d lost some weight, so clearly I’m doing something right.

Anyway, 1L asks:
“I’ve been thinking about juicing for a while now, and I’ve got a couple questions for you, if you have the time:
-Where do you find your smoothie recipes, or do you just make them up and experiment?
-Did you buy a special juicer or blender? I don’t have either right now, but was looking to buy a blender with some BB&B gift certificates that I have.
-Do you transport smoothies to work for lunch, or just drink at home?”

At first I looked for smoothie recipes online. I think I found a lot on raw food blogs. It might have been through Kris Carr’s Crazy Sexy Cancer documentary that I really started to consider juicing and green smoothies, using kale as a base for the smoothie. After I made them a bunch, I just started throwing anything in. Now I’ve started to experiement with more vegetables. The other day I put leftover broccoli in it, and today some fresh carrots that need to be eaten. I’ve discovered that pretty much everything works. Also, if you’re drinking it right away, ice is a good thing to add for texture and temperature.

I usually try to throw a little bit of fruit juice in too, but not too much and I use water as the liquid base. Though, if you’re looking for protein, all fruit and a little yogurt or milk is a yummy smoothie. I think the weirdest smoothie I’ve ever made was when I was recovering from surgery and got a really big protein craving. I put a banana, milk, and a few tablespoons of peanut butter in the blender with some ice. It was pretty good.

I use a plain old Oster blender that I’m pretty sure I got in college to make frozen drinks. It’s not special. I don’t think it was the cheapest model I could get, but I don’t think it cost more than $40. You could get something nicer, and it might work better, but right now this one is working for me.

I used to only drink smoothies at home but I was chatting with a friend recently who said that she’d been taking them to work for lunch. I peppered her with questions and she said that it separated a little, but a little stir fixed that. It was fine in terms of temperature if she put it in the fridge right when she got to work. She said that she just put whatever fresh or frozen fruit she had on hand and sometimes used yogurt and it always worked out fine. I tried it the other day; I made a smoothie, popped it in a drink bottle with a straw and froze it. I took it to work and let it sit on my desk and it thawed out in about four hours and was yummy and slushy. This way I don’t have to make the smoothie in the morning, because I’m really lazy and unless I’m working from home, it won’t happen.

San Antonio Breast Symposium, 2007

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.

an open letter to Washington Hospital Center

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.

I can take it

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.

drains are pulled!

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’s here

It was lost on me until just yesterday that I’ll be recovering from my second mastectomy during breast cancer awareness month.

I have mixed feelings on the month, most of which are summed up in Barbara Ehrenreich’s brilliant essay, Welcome to Cancerland: A Mammogram Leads to a Cult of Pink Kitsch. I’ll be thinking about this throughout the month and certainly posting about it more, as it’s my first BC awareness month after my own first cancerversary.

I will say this, though I don’t think sending in your crusty yogurt lid, or buying a pink blender can be classified as part of a movement and is just another sad commodification of a serious, and life-altering situation.

Sending a check to an organization of your choice, volunteering, or offering assistance to a person who needs your help or a pick-me-up in the form of a card, flowers, a cup of tea and some company is far better in my opinion then buying a pink spatula and feeling like you did your part.

dinner and big decisions

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.

recovery – day 2, and a thought on hospital treatment and pain management

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!

back from the hospital …again

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!