Archive

Monthly Archives: September 2007

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.


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.


yummy lunchtime smoothie

Originally uploaded by l@in.
today for lunch I had a delicious, healthy smoothie. they’re always better when you don’t make them yourself.

5 large strawberries
1 large chunk pineapple
2 medium chunks papaya
1/2 banana
1 TB flax meal
put into blender and fill halfway to top of fruit line with cranberry juice.

yummy.

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!

This evening we broke raw week at dinner with Indian food – salmon tikka and a potato and cauliflower dish. I have to say it was nice to feel fully satisfied walking away from a meal.

I do think that there are benefits to eating raw. You’re certainly getting plenty of fresh fruits and veggies. I found that I generally felt excellent in the mornings and had less difficulty getting out of bed which is funny since my caffeine intake has been next to nothing. As each day progressed I found myself hitting a wall somewhere around 1pm, and then getting progressively tired as the day wore on. I seemed to have more energy within one or two hours of eating though, so maybe I didn’t have the right pattern down and needed to snack on fruit or nuts or something more than I did.

I think leaning towards a more macrobiotic diet makes a lot of sense to me and I think I’ll strive to eat in that manner most of the time. While I don’t fully believe that what you consume can cure disease, I do think that health and diet are intrinsically linked.

That said, dessert was a homemade brownie sunday with cookie dough ice cream. Light ice cream, mind you.

%d bloggers like this: