Fever-free, finally?

Posted: August 31, 2011 | Author: | Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: , , , , , | 7 Comments

Yesterday was the first day since my surgery–exactly one week ago–that I didn’t have a fever for most of the day. I wasn’t exactly fever-free, as my temp peaked at bedtime, but that’s the best it’s been for one very long week, so I’m claiming it. After coming this close to needing IV antibiotics — again — I’m beyond thrilled to have been (mostly) fever-free yesterday. I’m guessing that the docs in my life would laugh a little, shake their heads, and maybe massage their temples a bit at me claiming yesterday as fever-free. I’m guessing my friends in the white coats would consider my being almost fever-free akin to being a little bit pregnant–it’s an all-or-nothing condition. That’s fine. They can chuckle and shake their heads at me, I’m still claiming it as a victory.

See, fever can indicate infection, and after my surgery last week, the fear of recurrent or new infection abounded. That fear was thick in the OR and it was pervasive in the days after surgery as we waited to see what would happen. It’s still lingering, in the back of my mind and on the fringes of my daily activities. I’m not a big fan of that loss of control. We did increase my course of oral antibiotics — both in duration of course and milligrams per dose. The usual suspects in the roster of awful side effects are back, but that tells me the abx are working. If there was a niggling infection trying to re-establish itself, the mounds of abx I’ve been taking for the last 7 days have contained it. I’m almost afraid to say this out loud, but I think I’m out of the woods.maria pace-wynters

Can it be? Like the joyous girl in the gorgeous Maria Pace-Wynters art, coincidentally titled “Out of the Woods,” I want to smile big and enjoy the view of the woods from the other side. I want to feel the relief that washes over me as I realize that the 6-day fever has broken, the pain & redness & swelling in the original infection site have abated, and I may be able to breathe easily now.

My infection-induced PTSD makes me wonder if I really can believe that the tide is turning, that I may be out of the woods. It’s been a long, long haul. A super-long haul. Reflecting back on the havoc that the post-mastectomy infection has wrought makes me very uncomfortable. I’m not yet in that happy place, and the calamity is not far enough in the rear-view mirror yet. Instead of feeling enormous pride, accomplishment, gratitude and general kick-ass-itude that it’s over, I’m gun-shy and untrusting.

This time last year, I was fresh out of the hospital, having just served day 27 of intermittent, back & forth hospital stays and at-home IV antibiotics. The last hospital stay to treat the infection was at Methodist in the Med Center, so I’d served time in 3 different hospitals–Memorial Hermann Southwest, Methodist Sugar Land, and Methodist Med Center–which allowed me to sample Houston’s best. I recall the direct-admit to the Med Center for the last stay, late on a Sunday night just before school started. Sweet Dr S had handled the details for me so I had a “fast pass” to get admitted quick, which allowed me to circumvent the circus that is a Med Center ER on a weekend night. Dr S and I were texting back & forth during the speedier-yet-still-complicated process so he would know that I was in the room before he had to get up and leave his family to come see me and get all of our ducks in a row.

I remember being furious about having to go back into the hospital. At that point last year, I’d been on antibiotics all summer, oral and IV, in every imaginable combination. Biaxin. Cipro. Minocycline. Zyvox. Vancomycin. Cefapim. Doxcycline. Bactrim.Vancanese. Levaquin. We were on the cusp of finding the magic bullets that would target the slow-growing and slow-to-kill infection (Bactrim & Minocycline), but it would take time to decimate the wily bacteria, so the infection still had the upper hand. As I settled into my room after navigating the maze that is Methodist Med Center, I was completely and utterly pissed at the ugly-ass artwork in my room. The shoddy impressionist landscape was hideous, the colors were barf-inducing, and the mere site of it reminded me that I was once again a prisoner — of my failing body and of yet another hospital. I couldn’t avoid that uproariously unpleasing “artwork” because it was in my face and I had nowhere to go to avoid it. That framed print became a symbol, a poster-child if you will, for all that had gone wrong last summer, and I was stuck staring at it. If I hadn’t been so ticked and so upset, I would have taken a picture of that “artwork,” and one day it will make me laugh instead of making me want to punch someone. But not yet.

Here’s what I wrote upon settling into that room; note the frustration surrounding the words that described the room but actually meant a whole lot more:

So I got through the masses in the ER pretty quickly and got into my room and thought, yuck, this place is a dump compared to my lovely one-bedroom suite at Methodist Sugar Land. Call me a snob, but I like those hardwood floors and new, unchipped paint. I don’t really need the laminated sign on the wall here reminding me not to leave my dentures on my lunch tray. The view out my dirty window is of a wall, with patient rooms too far away to spy into [one of my pastimes at Methodist Sugar Land]. The chair I’m sitting in to type this is vinyl, and there is a lovely faux-cherry-wood desk with ornate colonial drawer pulls. I could sit there, but the desk chair is super scratched with dingy upholstery on the seat cover. And don’t even get me started on the artwork on the wall across from the 20-year-old bed covered in ultra-scratchy sheets. No wonder people get sick in hospitals. It’s from the decor as much as the bacteria.

I was one unhappy girl.

I was coming to terms with the fact that the infection superseded the cancer in every way. For a while, that was a good thing — being so focused on the infection kept me from thinking about the fact that I was a 41-year-old mother of 2 young kids battling cancer. The cancer was easy compared to the infection. While a cancer diagnosis is one of the scariest things ever, the treatment for and eradication of that cancer was, for me, much more logical and linear than the infection. The cancer left me flat-chested, but once the tumors were removed and the lymph nodes declared clear, it was done. My game plan was defined: a 5-year course of Tamoxifen for adjuvant therapy along with hormone suppression to snuff the cancer’s fuel. The cancer battle was over and the treatment had begun, but the infection war hadn’t even revved up yet. Little did I know that more than a year later, I’d still be fighting that war, and that sometimes the infection would gain ground and force me to retreat.

The infection left me with a hole in my newly flat chest — literally. The excised tissue created a wound that measured 5.6 cm long and 3 cm wide. Grab yourself a ruler and feast your eyes on those dimensions. That bad boy took 8 weeks to heal, almost double the healing time required by my bilateral mastectomy. I’d faced my diagnosis, done my research, made the hard decisions, endured the systematic removal of both breasts, and was still standing. The infection, however, was a whole ‘nother ball game. There was no logic and nothing was linear — it was a guessing game. Educated guesses by a crack team of infectious disease docs, but a guessing game nonetheless. Will this combo of antibiotics work? How long will I need to stay on them? How will we know if they’re working? What are the side-effects of long-term abx therapy? Will I ever get my normal life back? The questions were many, the answers were few. I wrote this after one particularly frustrating day in the infection war:

All this talk you hear about being a pro-active patient, being your own advocate, researching and digging up as much info as you can and thinking for yourself — forget it. Today is one of those days that makes me wish I was a sheep. I just want to follow along and do what I was told. Except I can’t. It’s not how I’m made. So I continue to ask questions and solicit advice, all the while feeling like I don’t have all the puzzle pieces. Sometimes there are a few pieces missing, or you have to wait a while for them to fall into place. You can’t force it, although I want to. I am impatient and a forcer. An impatient forcer.

And I’m still waiting for the pieces to fall into place.

Meanwhile, I will feast my eyes on another gorgeous piece from Maria Pace-Wynters’s collection. This one is titled “Unseen Beauty,” and my eyes are open.

Yesterday

Posted: March 31, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , | 10 Comments

Yesterday was busy, and I was so occupied with celebrating the removal of the last surgical drains (HOORAY!), I didn’t fully process all that happened in the 3 doctors’ visits. Also, in the interest of full disclosure, I learned that two of the three docs read or monitor this blog, and that fact inhibits me. It takes a lot to achieve that, as I’m not easily inhibited or shut-up-able. Yikes.

So if the docs are reading today, hellooooooooo! Hope you’re having a great day filled with smiling patients, easy procedures, and ever-flowing compliments. Y’all deserve it. As I gaze down at my newly created cleavage, I’m indebted to you once again. Thank you, thank you, thank you!

Back to the long day yesterday — it began bright & early at Dr Grimes’s office, and the adventure was kick-started as soon as we walked in the door–Amy and I wondered if someone had spilled a bottle of Febreeze, as there was a serious overdose of artificial freshness in the small waiting area. An older woman who was waiting to see Dr Grimes said she couldn’t smell a thing, darned allergies, and she really hoped it wasn’t her perfume. Amy & I giggled behind our hands at the idea of someone with no sense of smell piling on the perfume, hee hee. Guess what? It was her perfume! As she left the waiting area for an exam room, the smell went with her. Egads.

Dr Grimes was full of wisdom–even more so than usual. I told him that Amy & I took the “Do I Have a Problem with Alcohol?” quiz on one of his HIV pamphlets in the exam room. According to the pamphlet, “people with HIV are prone to abuse alcohol.” They don’t have an exclusive on that propensity, believe me.

So the quiz goes like this: Amy read the questions, and I answered.

  1. Do you lose time from school/work due to drinking? No, but seeing the “due to” construction misused makes me need a drink. It’s “because of” drinking! Sheesh.
  2. Is drinking making your life unhappy? No, just the opposite. It makes my life very, very happy.
  3. Is drinking causing a change or harming your reputation? Nope, it enhances my reputation. It’s all good. But would it kill ya to say “causing a change in or harming your reputation?” Seriously, who writes these things??
  4. Do you feel guilty or have remorse after drinking? No way, I don’t even remember having had the drinks. And another beautiful thing about drinking is that it kills those kinds of feelings (which is why we do it, duh).
  5. Has your performance at school or work declined because of your drinking? On the contrary, my drinking universally enhances my performances.
  6. Do you often drink alone? Define “often.”
  7. Do you ever black out or forget what you have done while you were drinking? What was the question?
  8. Does drinking make you feel strong or overly confident? Why, yes, it does. I couldn’t write this blog without being under the influence, every single time I write. People don’t do this sober, do they?
  9. Has your drinking negatively impacted your relationship with family, friends, and/or loved ones? No, and if they really loved me, they’d get me a refill.
  10. Do you drink and are under the age of 21? Yes, and no. But I like looking at people who are under the age of 21, especially cute guys. No harm in that. And again, can we get a proofreader here? “Do you drink and are you under the age of 21″ flows so much nicer and sounds so much better. It’s not that difficult.

With the quiz completed, Dr Grimes swept into the room and gave us a passing grade on it. We told him that the only problem we have with alcohol is that we weren’t drinking bloody marys as we took the quiz and waited for the doctor. He shared a quote with us from one of his college professors, a man whose first name is Chivas: “My definition of an alcoholic is someone who drinks more than me, and who I don’t like.” Well said, Professor Scotch.

Another funny thing: Dr Grimes was in the middle of the Chivas story when I started stripping down for the physical exam. I don’t think twice about doing this because I’m so used to it at this point, but he clearly doesn’t have a lot of patients do this. I bet he doesn’t have any who were slated for 3 physical exams in the same day. He was working hard to avert his eyes while he finished his story!

The other good quote we got from Dr Grimes came in the course of our discussion of how long it takes to treat and cure infection, and how much more patient I’m being than I have been in the past (he really said that, and I didn’t prompt him — it’s true!). I used to ask him as often as possible when I’d get off the oral antibiotics. I’d even have my friend Laura, who works with him, ask him for me. But now that I’ve had a flare-up and am back on IV antibiotics, in addition to the oral abx, I’ve stopped asking. I will stay on the oral abx as long as I need to. 231 days and counting, but not impatiently.

Ok, the quote: it comes from Dr Grimes’s grandpa, who said “Anything looks fast running past trees.” That’s pretty deep. I’m going to leave the interpretation up to each individual, like a Rorschach test in which everyone comes up with a different answer. 

Let me know what your answer is.

Speaking of open interpretation, Dr Grimes gave me a copy of my pathology consultation report from the Big Dig. Fascinating stuff. I think it warrants a separate post. Don’t want anyone to get behind in their real jobs because this post stretches on too long. Plus, I need to look up a few more words and educate myself a little more. Either that, or have a drink so I can better ignore the multiple references of adipose tissue in the path report.

Thank goodness Amy was with me for the long day yesterday, both because I have proved to need adult supervision, and because I tend to miss half of what the good docs tell me. Not sure when I became such a birdbrain, but once I get in those exam rooms, I can’t seem to retain everything.

That, and I need a witness to some things like the fact that all three docs yesterday approved of my trip to Napa next week. Well, Dr Grimes’s approval was less than wholehearted; he basically said, I’m not going to tell you what to do because I know you will just go ahead and do what you want to do. I’ve learned that about you.” I think he coughed and muttered “tennis” a few times, as if we needed to dredge up the past in which there were rumors of me playing tennis before I was officially cleared to do so.

He said yes to Napa but wants to keep me on the IV abx right up until we leave, just to be sure. He thinks that whatever potential infection was stopped in its tracks before it had a chance to get ugly, hence the lack of progression. He was treating my symptoms but not seeing evidence of anything getting worse, so at this point the extra week of IV drugs is insurance. Anything that ensures me getting on that plane and heading to Wine Country is all right with me. He did tell me to try not to drink too much. Huh, yeah, right. I’ll give that a try. While in Napa. Uh huh. Gonna try real hard. Sure.

He let me go and said to come back in a month, but I had to make a return visit to the infusion room after I saw Dr Spiegel to get my next week’s supply of IV abx, and to have Nurse Shakey change the needle in my port and insert a new one. See why I need to drink, people???

On to Dr Spiegel’s office. Amy and I spent some time in the waiting area reading the pathology report,  giggling, and admiring this week’s delivery of fresh flowers. Once back in the exam room, I stripped down again, the second of three times in one day. I guess that would be weird for some people, but it’s all in a day’s work for me.

Dr Spiegel was as stunning as always, and I wish I’d asked her who cuts her hair because it’s a great cut. She continues to be pleased with the healing going on in the multitude of scars on me, and gave me the ok to ditch the flimsy post-surgical bra and buy a real bra. A real bra! Wow. Haven’t had one of those in almost a year. That’s strangely exciting. What’s not so exciting was learning that my belly may stay a bit swollen for 6 months. There was a lot of excavation done there, so it makes sense, but I’m ready for everything to be back to normal now! I need some compression on my belly to help reduce the swelling. How ironic is it that when I had a bit of a belly, I never wore a “compression garment” but now that my belly has been relocated north, I need a girdle. Fine, whatever, I’d wear a suit of armor at this point if it meant getting rid of the drains. Hooray and hallelujah that the drains are gone. What’s really amazing is that the holes that held the drain tubing are already closed. Not healed completely, and still really bruised, but not open and not seeping any fluid. Yes, it’s another gross photo but this one actually represents something to be celebrated. As in, I’m celebrating the absence of any rubber tubing. And instead of cringing, you should be celebrating that you don’t have any either. And while you’re at it, cross your fingers for continued healing and no drama. And be glad you’re not wearing a “compression garment.” Not that I’m complaining. Just saying be glad it’s not you.

My visit with Dr Spiegel concluded with her blessing to go to Napa, have a great time, just don’t go swimming since the incisions and drain holes aren’t completely healed. Trust me, the last thing I’m going to do is anything to jeopardize the fragile peace that I’ve made with this complicated wreck of a body.

From there, we zipped back to Dr Grimes’s office to take care of the port maintenance and pick up the latest box of goodies, then headed out of the med center and down University, past the beautiful Rice University campus, to Second Silhouette, the nearest medical supply company to get my new bra. Yea, how exciting — getting a bra at a supply store. No boutique or Victoria’s Secret for me. No sir, I got to shop at a store that also sells prosthetics and diabetic socks. Yea.

That’s all right, I was shopping without any drains, so it was all good. We were in and out of there quickly, since we were starving, needed to raise a glass to the drain-free status, and still get to Dr S for the third and final appointment of the day.

After some libation and a quick but yummy lunch, it was onward for the highlight of our week: seeing Dr S. His new office is configured so that he has a little desk visible from the check-in window, which has no glass (love that). He was sitting at the little desk, waiting impatiently for his favorite patient and her trusty escort, who he likes the most! I think he glanced at the clock to remind us that we were late, and I’m sure he didn’t want to hear that the reason we were late involved adult beverages. We said howdy, checked in, then fled to the hallway. He wanted to know where we were going, so I told him: to go smoke a butt. No, really, just needed a pit stop.

After that, we got right into an exam room and I once again eschewed the paper gown.

Greenisites.com

Save that for a “normal” patient who isn’t used to stripping down multiple times a day. I’ve saved a lot of trees from my frequent doctor visits. Always looking on the bright side. And I’d much rather hug a tree than a person. Can’t help it, I’m just not very touchy-feely. I just hope that this new habit of mine isn’t permanent; don’t think I need to strip down for the allergist or the podiatrist.

Dr S joined the chorus of “yeses” saying go to Napa, girl, you’ve earned it. ‘Bout time you got out of town. I remembered to get a letter from him to present to TSA saying I have metal in my body (the port) so I may set off the metal detectors. If they are suspicious, I can always strip down and prove it. Amy showed our shared gratitude by washing his glasses, which we could tell were smudged when he gestured and pointed with them. That’s full service. Always happy to help make Dr S’s life better, easier, more joyful. When he mentioned my little blog, he suggested I say some nice things about him instead of always busting his chops. I may have to start a whole ‘nother blog just for him, and to contain all the words of praise and appreciation I have for him. I forgot to tell him that guest blogger Kayte VanScoy described him as “fit and attractive” and likened him to a combination of Justin Timberlake, Arnold Schwarzenegger, and Karl Lagerfeld. What a mash-up!

We had some serious talk about Little League baseball and his 6-year-old’s stellar season so far. He knows I’m a big baseball fan, and we bonded over baseball about this time last year. He helps out with his son’s team and Amy and I both think that’s awesome. He has a seriously busy schedule and a very important job (well, the work he does for cancer patients, anyway; the more cosmetic stuff not as much), yet he’s proven time and again that his family is his priority. I’m sure the coach appreciates the frequent input that Dr S gives him, and he’s been known to make suggestions on the line-up.

After we solved the problems of the Little League team, our business was done. At least for that visit.

The Morning Report

Posted: March 4, 2011 | Author: | Filed under: breast cancer, Surgery | Tags: , , , , , , , , , , , | 4 Comments

Nancy had a restful night–as restful as being woken every hour can be.  A shout-out to her nurse, Amira, who was extremely capable and attentive.  Nancy did snooze very soundly when she was able. The combination of Norco and more Norco seemed to diminish her headache, although it’s not completely gone.  The pain is still there and is being managed by the Norco also.  This morning a bit of muscle tightness and tenderness in the stomach area reared its ugly head and has taken the forefront in the battle for attention.  While Nancy hasn’t actually called it pain, I think that may be the best word for it, and she did say it was a new sensation that came up today.  I bet the other stuff has diminished enough that this now gets to grab her attention.  She has bruising around the hip to hip “free tummy tuck” incision and Jennifer, Dr. Spiegel’s PA, says that they did have to work hard with her muscle layer there as well as on her chest wall so this is to be expected.  She has been given Flexeril (a muscle relaxer) to help with this and the added benefit is that it makes you VEEEERRRYYY sleepy.  So, even though at 5:15 AM, Nancy was confident that she was up for the day and we did the teeth brushing and face washing that comes with a new day, she was within minutes back to sawing logs.  Good Girl!  She has been dreaming out loud and woke asking me, “Is that due tomorrow?”  You can take the Mom out of the home but you can’t take the Home out of the Mom!

The fever is no longer an issue.  Nancy did a great job with her breathing exercises and coughing so those nurses must have been right about the phlegm.

Today is a going to be a busy day.  It started with a flurry of people in and out at shift change.  Dr. Spiegel specifically trains the nursing staff that takes care of her patients so there is only a handful of nurses who are qualified to be Nancy’s caregivers.  Her new nurse is Karina. There are promises of getting rid of her IV and a few other constant companions since she’s had the surgery.  Once that is done, she will get a shower and be expected to walk the halls at least 3 times today.  Nancy is looking forward to that since the compression stockings can be taken off during this time.

Mr. Morphine Pump has become just an extra appendage.  Nancy last summoned his prowess on yesterday’s second and final “sitting trial.”  She’s planning to shed him when she sheds the other hangers on.

It’s going to be a good day.  The staff is quite certain that the shower and ambulation will bring strong feelings of rejuvenation.  It has been mentioned twice already that she may be ready to be discharged tomorrow.  We’ll see how she feels later today and as Laura mentioned when she popped in for a quick Hi this morning, “Knowing Nancy, it might be better for her to stay until Sunday, just to keep her from doing too much.”  Yep, Laura, you are probably right about that!

We’ll keep you posted.

This is too good to keep to myself

Posted: February 27, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , | 6 Comments

So it’s Sunday morning, I’ve got my coffee to quell a roaring headache (from the pollen and not the champagne that Mr Cremer pours with a heavy hand. I love a heavy pour). I should be pulling everything out of the pantry and organizing it (again) in a manner that will make it easy for the little people who live in my house to find exactly what they need the precise moment in which they need it, because I’m gonna be parked in a room at the med center for a while and unable to do their bidding.

Once I finish that, I need to gather up all the laundry in this house and wash, dry, hang/fold it all and return it to its original home in each recipient’s dresser and closet, then try to convince those recipients to wear the exact same clothes (turn ’em inside-out if you need to for variety) for the next 3 days so that when I leave the house for the hospital, the chore I really hate will remain completed for more than 2 hours.

I still need to put away the groceries I bought yesterday (I already put the perishables away, as soon as I got home, so don’t worry about spoiled milk and moldy cheese). Then I need to clean out the fridge and discard anything that won’t get eaten while I’m gone so it doesn’t confuse the folks who try to eke out a subsistence in my absence.

One of the big tasks hanging over my head is to sit down with the calendar and make a master schedule of all the events I will miss in the next little while, to ensure that the kids get where they need to be and that Trevor and my dad (who’s coming to help run herd on my little calves) know who’s coming and who’s going. Also need to take a peek and see what events are upcoming for which I need to stockpile, be it a birthday gift or card that needs to be readied.

Instead, I’m getting ready to go play tennis and scratching my head at one of the weirdest stories I’ve ever come across. No wonder I can’t get anything done; this is all-consuming.

If you missed this story on your local news, you must read it now. Thanks to Amy Hoover for calling my attention to what is by far the craziest story I’ve heard in a long, long time.

It will take you 30 seconds to read it, maybe a minute if you slow down to read thoroughly and fully digest all the details, unlike some of us who skim wildly to find the juiciest bits.

I don’t even know where to start with this one. I’m glad the story was so short, because there are so many points on which I’d love to wax poetic. But where to start?

Ok, I’ll start with the woman’s photo. My first thought was, I sure hope she was driving to the hair stylist’s because she needs to touch-up her color right away. Yikes! I haven’t seen roots like that since Macy pulled the world’s biggest tap root out of our flower garden last summer. I mean, that sucker was as tall as Macy. And now this woman’s roots rival that super weed.

Next: her ex-husband was in the passenger seat, as she’s driving to meet her boyfriend AND grooming herself for said meeting. Huh??? Presumably it was her car, since the ex was in the passenger seat, so why was he going, too? I could see it if he were dropping her off, but what in the world was he doing in the car? And more importantly, what was he going to do once she got to her boyfriend’s house? I’m assuming he knew what activity she was engaging in at the same time she was driving a car, so why didn’t he tell her to pull over and let him drive so she could finish her other task.

Moving on: she’d been busted the day before this insanity for DUI and driving without a license. So driving while shaving her nether-region is what she does while sober? Holy tequila shots, what does she do while drunk? That must be a whole ‘nother story. Probably much longer. And crazier.

And finally: the woman and her ex drove a half-mile after the crash and exchanged seats; ok, I can see how that makes sense in the mind of someone crazy enough to do what she was doing. But my question is: if the officer had witnessed a similarly insane situation, why on earth didn’t he share that one, too?

Now I’m really curious.