m00se

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.

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!

Diacetyl, a chemical most commonly used in microwave popcorn is finally getting the bad press it deserves and its use is being discontinued by some companies. Expect more to follow.

• My previous post about diacetyl
• As covered buy the Toronto Star
• Wired News
• The In the New York Times

yesterday i went running for the first time since my mastectomy. i was told by my plastic surgeon that i could have gone about 2 weeks ago, but i just didn’t feel up to it. technically i had full permission to do as i pleased, but when i tried to lift weights again i could feel this sickening tightening against the hard tissue expander in my chest and a faint ripping sensation and when i walked too fast, i could feel the muscles tightening against a mass that would not give.

so i waited. i worked with a 2 pound weight. i walked for miles. i became convinced that this was my new state of being, no more 9 mile runs, no more weight machines. i’m kinda funny about physical ability and illness. i’m often convinced that my malady is mentally construed, that my inability is me not trying hard enough. throwing up my own barriers and refusing to jump over them. this became most clear to me the morning after my 4th surgery, after i got the morphine drip i was told i wouldn’t need and i was in so much pain i couldn’t see straight. when my plastic surgeon came in at 6am the next morning, i asked her if it was supposed to hurt this much. i was again convinced i was making it up, but she reassured me that she had cut clean through my muscle - it was no minor surgery.

fortunately i was wrong about the running. i always hate the first half mile, but this time it really hurt like a bitch and it did the whole way. not only were my underused muscles protesting their return to activity, but only one breast bounced, the other felt like it was going to rip through my muscle with every step. but i did it anyway. for 2.5 miles. and i’m pretty happy about that.

post-op

Originally uploaded by l@in.
So it was decided by my plastic surgeon that the best way to deal with the seroma that developed post mastectomy was to go in and drain out the fluid. It had become so large that my right breast was approximately the same size it was pre-mastectomy. Since my tissue expander is already inserted, going in and doing it manually presented the potential of a puncture.

Therefore this morning I found myself at Washington Hospital Center, at 5:30AM checking in for yet another surgery, exactly two weeks after my mastectomy. My amazing plastic surgeon, Dr. Susan Otero, went in, evacuated the fluid, scraped out some clot build-up (ew!) and inserted two new drains which will stay in for about a week. This means I’ll probably get to take my drains to work with me, which should be a laugh a minute.

Happily yesterday I went thrifting and got several oversize button up shirts and a sweater, all nice enough for work, which will hopefully cover the drains.

I am exhausted, overly emotional from the anesthesia, and am hallucinating really negative things when I try to sleep so, here I am blogging, waiting for Joanna to pick up my prescriptions, and watching Annie Hall, which I just discovered came out the year I was born. How funny.

One of the most frustrating things about a cancer diagnosis is what you can’t do about it. You can have treatment and surgery, etc. but you can’t fully predict the results, nor can you make certain that the cancer won’t return or the treatment from the first cancer won’t increase the likelihood of a different type or cancer or illness in the future. You have to deal in the now and do it quickly. Without the diagnosis of a serious illness like cancer yourself, it’s easy not to think about it unless it’s touched someone you love or care about.

If you’ve dipped your toe into the cold pool of research or academia you know how difficult it is to fund and plan for a longitudinal study. The American Cancer Society is in the process of launching an exciting new study that will follow half a million men and women who have no personal cancer history for the next twenty years. The study is referred to as CPS-3. The goal is:

to better understand the lifestyle, behavioral, environmental and genetic factors that cause or prevent cancer and to ultimately eliminate cancer as a major health problem for this and future generations.

Each one of my bevy of doctors has told me, “we have no idea why you have this.” My doctors are affiliated with such places as NIH, Johns Hopkins, and George Washington University. It is disconcerting at best to have such an amazing team of experts tell you that you’re an inexplicable anomaly. In my own personal life, I have two other friends under the age of 35 who have also been diagnosed with various forms of cancer that for all intents and purposes, they should not have.

If you fall into the age range of 30-65 and have no personal history of cancer and are interested in the study, you can contact them by phone (1-888-604-5888) or email (cps3@cancer.org) for more information.

Incidentally, I know I’ve mentioned it before but I still plan to participate in the Komen National Race for the Cure on Saturday June 2nd. If you’ve donated already, I can’t tell you how much I appreciate the support. If you’re considering making a donation, there’s still plenty of time. I’m still hoping to run, but the way I’m feeling now, I may be walking, but more importantly, I’ll be there.

georgia avenue 6am

Originally uploaded by l@in.

I was up at 5:10 this morning to make the 5:57 bus down Georgia Avenue to get to the hospital for a couple of tests …which led to another test on Monday.

*sigh*

I’m really over this whole cancer thing.

The street was pretty this morning, and sadly Meg, the coffee didn’t happen until after the first test was over this morning. :)

bad blood draw attempt

Originally uploaded by l@in.

you’d think that if a meth addict can manage to inject themself in the neck to get their fix, surely to god a trained professional could manage to get 7ml of blood into one vial without too much trouble, no?

on monday when i went to get the blood drawn for my genetic test, it took 5 tries, and two people to get the necessary biological fluid. it also involved a call to myraid to make sure that i could use a different series of smaller vials to contain the appropriate amount of blood, as the vial provided in the kit was unusable after a heroic attempt to drain blood from a tiny ass vein on the top of my hand, as you see here.

my left forearm is a disaster. i look like a junkie. i’m glad it’s still cold and i’m not living in baltimore anymore.

0309071111a.jpg

Originally uploaded by l@in.

My insurance company finally came through and approved genetic testing for the BRCA1 and BRCA2 gene mutations. All of my doctors have recommended considering a prophylactic mastectomy of the unaffected breast if I test positive for the mutation. Therefore to be able to make a more informed decision, the surgery has been pushed back to mid April.

Ultimately it’s a good thing. The test is about as expensive as an MRI, so I was surprised that it was approved. But now it’s more waiting. More biding my time, waiting for the test results and another big decision to make.

It also seems that I’ll probably be having surgery later in the year for the fibroid issue. It’ll be an outpatient thing with a short recovery period so at least that’s a positive thing.

After never being in the hospital before since I was born, buy the end of this year I will have had 5 surgeries over the period of a year and a half. I’m going to be really happy when I can start taking vacations again instead of surgery breaks.

I no longer have hobbies - I have doctor’s appointments.

This week I went to five different doctor’s appointments where discoveries were made such as:

- I have a large fibroid pressing against my spine
- My ovarian cysts have rejoined the party
- I will have an expander placed at the same time as my mastectomy.
- I have calcium, B-6 & B-1 deficiencies. I have been taking supplements for months. They are the only supplements that I take. WTF?
- I need to take vitamin C as my immune system is in the toilet.
- My bone density isn’t what it should be.
- The incision site for my most recent surgery has developed an abscess.
- I have conjunctivitis

I also have a date for surgery: March 21.

All of this news, I’m sure, is just as thrilling to you as it was to me and you, dear reader, are so lucky as to get this parcel of information all at once, whereas I was forced to get just a little bit, day by day, throughout the week.

My primary care physician (whom I’ve seen 2x in the past seven days - he says hello.) does all of these crazy blood tests pretty much every time you go there which used to seem a little excessive to me, however I’m now really happy that I know what my blood levels are.

So now I’m on antibiotics for the abscess, a different set of antibiotics for the conjunctivitis, and the usual round of vitamins and tamoxifen. Taking regular drugs like this had me a little concerned about my liver, as I do like to give it some exercise. Thanks to my primary care physician’s fastidiousness I know that my liver is in tip top shape. Thank god something is.