There’s no one reason for my blogging hiatus. Once we got settled into the new house, I could have resumed blogging. I thought about it many times, and even bookmarked several articles as good potential blog fodder. Fodder or no, my heart has not been in it. I’m a believer in this statement by Gandhi:
If something is truly important, that’s what we do. That which is most important is what we make happen. So as much as I have thought about blogging, I haven’t made it happen. A recent conversation with a dear friend helped me realize that I miss blogging, and that it provides a necessary outlet for thoughts, fears, and ideas. And venting.
A few weeks ago, I realized that the anniversary of my cancer diagnosis was approaching. Yesterday was the fourth anniversary of my bilateral mastectomy.
Four years a survivor. Somehow that doesn’t have quite the emotional “oomph” as Twelve Years a Slave, yet we mark the events in our lives — both positive and negative — in years, and we celebrate or commemorate anniversaries.
I’m not sure how I feel about another year of survivorship. It’s a prickly issue, and one in which the face of a very public disease gives way to a very personal struggle. The obvious-seeming emotion about surviving cancer would be relief, to be glad it’s gone. But here’s the prickly part: it’s never really gone. Instead, it’s the monkey on my back that manifests in every twinge or symptom that might possibly signal a recurrence; a random bone ache is surely a sign of mets. It’s the generalized anxiety about if or when recurrence will strike. It’s the niggling thoughts in the dark of night about the presence of micromets in the area formerly known as my breasts. It’s the questioning of every decision made along this “cancer journey.” Did I do enough? How much is enough?
Does it ever get easier, this uneasy survivorhood? Perhaps. Like grief, it becomes less raw, less all-consuming. But it doesn’t go away. As I’ve written about before, it’s never over. While some like to celebrate the anniversaries of survivorhood, I’m leaning more toward ignoring them, to not calling attention to them in hopes of not jinxing myself. It’s a personal choice, with no right or wrong status. I notice the dates as they approach, but instead of stopping to acknowledge them and the myriad emotions they evoke, I keep my eyes on the horizon.
If not for the priceless blog fodder, I’d be pretty steamed after my visit to my dermatologist yesterday. I’m ever so grateful for my sense of humor, especially after last week’s doctor’s appointment on a day that went from bad to worse to are you freakin’ kidding me??
My dermatologist is lucky I have this little blog as my outlet for all the things I’m compelled to rant about, to rail against, to bitch & moan about in general.
A little background: she’s a fantastic doctor. She embodies many of the traits I’ve come to appreciate and insist upon while spending time in an exam room. She’s punctual, no-nonsense, very thorough, and more than ready with the prescription pad. Her office is staffed by all women, with nary a male doc in sight, which thrills me to my feminist bones.
Perhaps it’s my bad for scheduling a first-thing-Monday-morning appointment. Maybe she had not had her RDA of caffeine. It’s possible that her personality pills had yet to kick in at that early hour. Whatever the reason, she didn’t waste any time with pleasantries. I’m cool with that, and as much as I enjoy having a comfy relationship with my health-care practitioners (especially those who see me naked), I’m good with the all-business appointment that gets me out of there and on with my life.
I sat on the paper-covered exam table in my thin paper gown precariously close to shivering — yes, people, a temperature of 52 degrees in South Texas does count as c-o-l-d, and I’m aware of the fact that 52 degrees could be considered a heat wave in some parts of the country at this time of year. I was awaiting my doctor to come in and do my annual mole check. Because I had melanoma several years ago, I take my mole checks very seriously, and as much as I hate stripping down to have every inch of my flesh examined, it’s a necessary evil and one I never skip out on.
My melanoma showed up on the inside of my right foot, on perhaps the one and only body part without any excess flesh. A number of specialists were consulted on how best to excise the infested tissue in such a delicate area. Opening the area and excising the melanoma weren’t the problem, but closing the incision was. Little did I know that that experience would be the first of many “think of the most complicated scenario” scenarios in which I would find myself. Post-mastectomy mycobacterium, anyone? In case you’re wondering, the solution to the flesh-less foot melanoma was Mohs surgery in which the surgeon used a zig-zag shaped incision to allow him to close that incision with limited flesh upon which to draw together. I have a now-faded zig-zag scar that predates Harry Potter’s lightning bolt on his forehead. I had a lightning bolt scar before lightning bolt scars were cool.
Anyhoo, back to my terse and not-so-warm-and-fuzzy dermatologist. The first thing she said when she walked into the exam room was, “What are you doing about your rosacea?”
Um, I didn’t know I had rosacea. My face gets red when I exercise and when it’s cold outside — and again, 52 degrees does count as cold — but I certainly have never had the bright red spots that I associate with rosacea. Great, now I’m feeling self-conscious.
I asked her what she thinks I should do about my rosacea (and I want extra credit for not asking it in a smart-assy way; I mean, she is the doctor, after all). She shrugged and said there aren’t any creams on the market that really help, although there are a couple in FDA testing that should be available in a few years. Meanwhile, she thinks I should go for several laser treatments, which start at $600. Out of pocket, I’m sure. She suggested that I figure out what my triggers are and avoid them. Since she didn’t go into any detail on the common triggers, I looked them up myself and found that they include stress (not gonna get away from that one anytime soon), spicy food (I do like my jalapenos and Frank’s Hot Sauce; I put that beep on everything!), hot beverages (I’m a two-cup-a-day coffee girl), sun exposure (did I mention I live in South Texas?), exertion in hot weather (again, South Texas), oral antibiotics (so I’m guessing that 267 days of two different oral abx would factor in here), and drumroll please…the last trigger for rosacea is…alcoholic beverages.
Ok, I’m out. I’ll just have to figure out a way to live with my extra-rosy cheeks because every item on the list is a factor, but the last one is a deal-breaker.
Moving along, she examined me and made notes of the normal-looking moles scattered here & there on my body. Because of being inducted into the pink ribbon club, I’ve spent plenty of time mostly naked in doctors’ offices. I’ve had my flesh poked & prodded and examined quite intently enough times that I don’t even think twice about it; in fact, I got so used to the weekly follow-up exams after the mastectomy, the multiple surgeries to rid my chest wall of the mycobacterium, and then the Big Dig reconstruction that it seemed weird to not take off my clothes at the doctor’s office.
However, none of my previous time spent in my birthday suit with a doctor prepared me for her question: Why did you have a mastectomy?
Ummmmm, because I had breast cancer?
Why else do women undergo such a physically and emotionally taxing surgery? What kind of question is that???
I wondered for a sec if I’d heard her right, then answered “Ummmmm, because I had breast cancer.”
She then wanted to know why I had a bilateral mastectomy; was the cancer in both breasts? I replied no, at least not that was detected by the multiple mammograms, bone scan, or PET scan, but that was the right decision for me. Once I heard I had breast cancer, I took a slash-and-burn approach. Good thing, too, because my post-mastectomy pathology showed a large and scary smattering of micro-mets that were likely just waiting to organize into a full-blown tumor, with a bonus of Paget Disease to boot.
She complimented my reconstruction and said it looks good, that they see a lot of it, and mine is better than most. I replied that I was very fortunate to have such skilled surgeons, yadda yadda. It never seems like the right time to mention that while my surgeons did an incredible job with my reconstruction (especially considering how wrecked my right chest wall was after the infection), it’s still reconstruction, and I was perfectly happy with my breast before I had to have them chopped off and rebuilt using another body part. It never seems appropriate to talk about how the reconstruction restored some mass to my previously scooped-out chest, but it’s not the same and will never be the same as it was before. I never feel as if the conversation will meander toward the topic of how no matter how skillful the reconstruction, there’s no way to escape the constant and visual reminder that I had cancer. I’ve yet to find a way to say that the myth of getting new boobs after breast cancer is just that, a myth. Yes, they’re new, but they’re not really boobs. I can’t ever figure out how to say that while I’m very grateful to have had access to the best docs in one of the best medical facilities in the world, and yet my reconstruction still leaves me feeling less viable. It’s certainly not considered polite chit-chat to recount how grueling the DIEP surgery is, how precarious the transplanted blood vessels are, how unbearably uncomfortable it was to be in the ICU with heaters blowing to warm those blood vessels, or how the stress of flap-failure can bring on some serious PTSD.
All that from a sincere compliment about my reconstruction. Sheesh, what a head case I’ve become.
Just as I was talking myself down from the myriad ledges my brain landed on and working hard to get back to the present moment, which was a simple mole check, my dermatologist asked another question: Where did they get the flap from for my DIEP? From my belly, I replied, and braced myself for the inevitable comment about how nice it must be to get a “free” tummy tuck. Before she could utter that platitude, I launched into a distrationary tale about how I had to gain weight to create enough belly fat to make a good flap; ha ha ha, I said, it was so funny that I had plenty of fat in my hips & thighs but not in my belly. As I lay on my belly and she examined my back, she asked why they didn’t take it from my back (because apparently there was plenty available, and she was staring right at it). Well, because I didn’t want to lose my tennis serve, I said, resisting the urge to ask for a mirror so I could see just how fat my back is.
The coup de grace, though, came when she said how lots of people probably envied me having to gain weight for the surgery, and then delivered the final crushing blow to my already-battered ego by saying, I guess you’re still working on losing that weight, huh?
Yep. Still working on it.
And I’ll keep working on it. Right after I find a new dermatologist.
My first instinct when I sat down at the computer today was to bitch & moan about the fact that I’m rapidly approaching one month post-reconstruction and I still have the 2 JP drains, one on each hip.
Have I mentioned how much I detest and despise these drains? While I understand their importance, and I’m a big supporter of fluid being outside instead of inside my battered body, I detest and despise the drains.
Because of the latest flare-up, i.e., the MRSA infection, the drains will stay for the foreseeable future. It’s a vicious cycle: I probably got the infection from the drains, but the drains have to stay until the infection clears. As long as I’m on IV antibiotics, I need the drains, and as long as I have the drains, I need the IV abx. Twisted, huh?
I’m starting week 2 of House Arrest, and this week isn’t any easier than last. The idea is that if I lay low and do next to nothing, the fluid levels will decrease and I can get the drains removed. But now with the MRSA, the drains need to stay, because if there is infected fluid, it’s gotta come out. Nothing makes me more nervous than infected fluid sitting around making mischief on my insides. I had a crazy idea this weekend: since the drains are staying anyway, why not get some things done around the house? Well, because increased activity means increased fluid levels, and then I’ll be stuck with the drains even longer, that’s why.
Instead of bitching & moaning ad nauseum about drains and House Arrest, I need to find another topic. My quick run-down of all the positive things about this situation left me uninspired. The usual suspects in my list of “bright sides” seems stale and failed to provide me with the literary verve I need.
But then I remembered my port-a-cath. Yes, the port! That’s a bright spot on this barren landscape of bad news topped by rotten luck. And what a story, too: I thought I needed it for chemo, then I didn’t need it for chemo, and had some trouble with it once I got it, but then ended up needing it for so much more! And voila, the topic du jour.
I used to hate my port. I hated that I had to have it in my life at all. I hated that getting it meant yet another surgery and all the hospital stuff that I detest. At first, it was red and angry and painful, and looked just plain awful. At the risk of sounding like a xenophobe, my body clearly doesn’t like foreign things. First the tissue expander got infected, then the skin around the port got hot and red and big-time uncomfortable. The port made it clear from Day One, on June 25th, that this was not going to be an easy co-existence. The port caused me to spend a Saturday in the ER (Good golly, have I not spent enough time in the hospital already?). Thank goodness there was a “Deadliest Catch” marathon on TV that day, or I would have been fit to be tied.
Questions keep coming in about the port, and after I mentioned it in yesterday’s post, I guess I incited the curiosity again. Here’s Wikipedia’s definition of a port: a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.
I agree with all of that, except for the period being outside of the quotation marks around needle stick at the end of the sentence. The period should be inside the quote marks. Other than that, it’s all good.
While there are lots of different ports, I got the Power Port. I didn’t express a choice, didn’t think about it, but trusted Dr Dempsey to choose the right one for me. I was still healing from that damned infection that showed up after the mastectomy, and wasn’t thinking about which port was best for me. I got the port because the most respected oncologist in my area said I needed chemo, then a another highly-recommended oncologist seconded that opinion, so I was going to do chemo. Long story short, my lymph nodes were clear and my margins were good, but I had micrometasteses, which essentially are cancer cells that are floating freely and not organizing into tumors. Some oncologists consider micromets to be node positive, meaning the lymph nodes are affected, and some oncologists consider them node negative, meaning they have not traveled to the lymph nodes. Some crazy patients, especially those who watched their sweet, irreplaceable mama die from cancer, think the micromets may not be organized, but need to be blasted with chemo anyway.
Yes, that was me.
Statistically, my case was contraindicated with chemo, but I’ve never been a numbers person, and I admit that my initial pro-chemo decision was based on emotion, not statistics or science. I was still reeling from losing my mom, and sure didn’t want my kids to have to suffer that terrible fate. Who am I kidding saying “I was still reeling” — I AM still reeling and probably will be for the rest of my life. Stupid cancer.
So I reacted emotionally and, driven by fear, decided to do chemo. I had done my due diligence by consulting two vastly different oncologists (one old and established who is super conservative; the other younger than me and quite current on the latest & greatest research, and also highly recommended by a friend in health care. Both doctors based their pro-chemo recommendation on the fact that I was 40 years old and healthy, and able to handle the chemo. Or so we thought.). I wasn’t thrilled with starting chemo — who is? — but was prepared.
Then the mycobacterium entered my life, and 11 months later, is still a huge part of it. The only good thing I can say about the myco is that being sick, sick, sick in the hospital with a post-surgical infection disqualified me for chemo. I was too sick to start it, and my body certainly wouldn’t have withstood it well. In the meantime, we crunched the numbers again, consulted a third oncologist, and I came down off my emotional decision-making high horse and saw that the numbers really didn’t bear it out. Chemo for me would result in a very marginal increase in survival rate. If the fortunes had not granted me that one small favor, and I had needed chemo but was too sick from the mycobacterium to start it, I would have been a basket case. Much more of a basket case than I already was, that is.
Talk about a blessing in disguise. While I was reeling from and healing from the infection, Dr Dempsey suggested I consult a third oncologist, because maybe chemo wasn’t what I needed. She never thought so, neither did Trevor, and neither did oncologist #3. My cancer happened to be slow & lazy, which is the best kind of cancer to have. Except for the nonexistent kind, that is. So no chemo, just Tamoxifen for 5 years. But I’d already gotten the port.
Nobody ever accused me of sitting on my hands.
The Power Port comes with a handy, dandy patient pack. When I got home from the procedure to insert the port under my skin and into the vein, I laughed at the handy, dandy patient pack. It seemed so stupid, and to me typified the excess and waste that’s prevalent in the pharmaceutic and medical-device business.
There was a pamphlet full of meaningless prose written to allay any fears I might have about the port (like the fact that it’s sewn into the jugular vein. Hello???) and make me feel warm & fuzzy about the little device. It also included a jelly-type bracelet that I guess they expect port people to wear, along with an ID badge with the serial number of my particular device. Why I would ever need this I couldn’t fathom, so I pitched it all. If you were hoping I’d give you the snazzy jelly bracelet, too bad. You missed out.
My favorite part was the list of bragging points:
“Lightweight for patient comfort.” “Reduced artifact.” “Easily identifiable.” “Power injectable.” “Titanium port body.”
Despite the goofy marketing, I have to admit that having a port is highly advantageous if you have wimpy veins. And I do have wimpy veins. At first blush, they seem perfectly competent and cooperative, but once the needle pierces the skin, they flop around like fish out of water, making it hard to pin them down (no pun intended).
After multiple hospitalizations for the blasted infection, though, that port came in handy. And it was crucial during the courses of IV antibiotics I have had at home. And it was supposed to be quite handy in my reconstruction, because the anesthesia, antibiotics, and pain killers (lots and lots of pain killers) can flow through the port instead of an IV in the crook of my arm. However, the port was in the way during the Big Dig, and so the Drs S decided not to use it during surgery, even though it had been accessed, and they put an IV in anyway. At least I was asleep for that.
I don’t hate the port anymore.
It still kinda creeps me out, but I don’t hate it. I shiver a little when I think about the fact that it’s sewn into a vein, and not just any vein but the jugular vein. That’s super creepy. I don’t like that the 3 little nubs on the port’s septum are visible through my skin, and if I turn a certain way, the nubs really protrude. I guess that makes it easy for the nurses who access the port, but it looks weird and reminds me that it’s sewn into the jugular. Sometimes it gets crunched when I’m sleeping on my left side, but I’m still not allowed to sleep on my side since the reconstruction, so never mind.
Several people have asked me why I still have the port and when I’m going to get it out. The answer is not until the infection is gone for good. And no, I don’t know how long it will take. Almost a year into it, I still don’t know. I stopped asking, and you should too.
The main downside to keeping the port is that when it’s not being used, there’s some maintenance required. No big deal, just a trip to see the oncology nurses every 6 weeks. Every visit reminds me how fortunate I am, and that my cancer business could have been even more serious. The infection is plenty serious, but at least the cancer side of things was pretty straightforward.
So the port maintenance goes something like this: the nurse puts a sterile drape around the port site and tells me not to look down or breathe on it. She scrubs the top of the skin on top of the port real well with iodine. It’s cold, and the sensation of the iodine-dipped wand passing repeatedly over the port is disconcerting. The smell of the iodine is gross and reminds me of post-infection wound care, without a single happy memory to be found.
After rigorous cleaning, the nurse jabs a short but very thick butterfly needle through the port’s septum, using the three raised nubs to guide her. Every time I’ve had it done, which had been lots, the nurse has essentially told me to brace myself for a really big stick. They do not exaggerate. The Power Port website says, “For most patients, there is only a mild pricking sensation felt during needle insertion. Frequently, the sensation of the needle insertion decreases over time.”
Lies. All lies.
Sorry if the photo sicks you out, but if I have to endure the “mild pricking sensation,” surely you can manage to peep at the picture.
Once the super-thick needle is in, the nurse attaches it to a thin tube that she can then attach a syringe to and inject whatever needs to be injected: chemo drugs, antibiotic, pain killers (yes, bring on the pain killers!) some contrast dye for certain scans, or in the case of port maintenance, saline and heparin.
After I’d had this process done several times, one of the chemo nurses asked me if I had used the numbing cream before that day’s appointment. Numbing cream?? What numbing cream? No one had ever mentioned that before.
Well guess what–there’s a numbing cream. Lidocaine and Lanocaine and some other caine all whipped up in a prescription cream that will make the port maintenance so much more pleasant. Yes, please. It does help (when I remember to apply it before my maintenance appointments), and Macy and her friend Ella both used it on their earlobes when they got their ears pierced.
So every 6 weeks I get the port flushed–sometimes with and sometimes without the numbing cream. No big whoop, although one day it bled quite a bit after the needle came out, and made a bloody spot on my most favorite white hoody that remains even after multiple bleachings. Perhaps it’s a symbol of what I’ve been through, and of how much I can endure. It’s a reminder not to whitewash the bad stuff, to leave a hint of the gore around to bear witness to the hard times and rough road that one must travel, sometimes precariously, sometimes fast and sometimes slowly, to get to the other side.