You're Going to Need to Get Yourself a Sharpie

A brief report from Monday's Jekyll/Hyde-like visit: the doctor removed the right-hand drain (yay!) but then took a look at the left surgical site and said I had an infection and that if the strong antibiotic (Cipro) he was about to prescribe did not start knocking it back in 24 hours, then I was going directly to the hospital for intravenous antibiotic "cocktails" and if that didn't work he was going to surgically remove the expander from the left side. (He feels strongly that this is all the result of the radiation I had four years ago, and that in all probability I will need a different kind of surgery for a good final outcome - involving using a muscle from the back of my left shoulder.)

He drew an outline around the infected area with a blue marker and said that if the redness went outside the marked lines within 24 hours, I should come back to see him, with a bag packed for the hospital.

I managed to fit in all 3 doses of my first day's worth of medication between the time I got home (about 7:30 p.m.) and bedtime. (And it was fine, for all you doctors/pharmacy experts, etc.) The redness started to abate, almost imperceptibly but for sure, and a little hope sprung up. Poor Rod; from the time I went to bed that night through the next day, every time he turned around I was lifting up or pulling down my shirt and asking him if it looked "any better." (Yes, some of that ole' magic is gone for the time being.)

Today was the go/no go doctor visit. He took out the other drain (said he was pretty sure it had done all it was going to do) and pronounced the infection beaten back enough to allow me to leave on Saturday with Rod and the boys for our annual trip to the Cape. I am going to keep up with the antibiotic for an extra week, just to be on the safe side.

I have been ordered to limit my upper body activity to prevent the formation of more fluid (now that it has no easy escape route.) And, the doctor re-drew the blue lines around the infected area. He further instructed me (Rod) to draw the lines each time before a shower and draw them again after every shower. If anything should start to redden where it was not before, we are to call his office, get in the car, and drive back to NJ, directly to the hospital.

It was then that he said, "You're going to need to get yourself a Sharpie." If I had not ridden such an interminably long emotional roller coaster these past few weeks, I would have laughed (as possibly a few of you are doing already.)

My Sharpie marker collection at work is carefully guarded by my aides - a hot commodity for anyone who wants "real" color instead of the washable markers we keep in the classrooms - and a huge inside joke, I'm sure (okay, so maybe not so inside.) I have tended it as one does a garden - making sure all the caps are on tightly, adding to the collection over the past years as I find new colors available (and on sale,) keeping them organized in special sectioned-off containers, weeding out the ones past their prime to make space for the strong - adding this year hot pink, mint green, powder blue, a peachy color, and a lovely lilac.

If I wanted to make life more interesting, I guess I (Rod) could re-ink my "infection corral" lines every day in a different color. But you know what? Life has has been interesting enough around here lately.

Instead, maybe we're better off with some un-interesting time sitting under trees by the lake. Add clam chowder, perhaps a lobster dinner, the penny candy store, several lightweight novels, some study I've been too keyed up (or dragged down) to enjoy, falling asleep (sleeping!) to the sound of the lake's gentle "waves" lapping up against the shore, visits with my dad and my brothers and their families..........sounds like a plan.

If You Can't Say Something Nice

How's the rest of that joke go? "Then, sit next to me."

Since there doesn't feel like there's much 'nice' to say, I have been adhering to the more traditional end of that line, which is not to say anything at all. The final pathology reports came back in on the lymph nodes, and there is, on a much closer inspection than I'm sure was possible even 5 years ago, a bit (piece? glob? atom? a centimeter) of cancer in one node. So the reports went to the oncologist and she has submitted that the samples be onco-type (sp?) tested, I guess to determine a course of treatment. She asked me why Dr. McIntosh didn't schedule another surgery to take a few more nodes, and I said I was told she didn't think it necessary.

So, Dr. Ligresti will call Dr. McIntosh (they are on first-name basis so Louise will call Merle) and discuss this. I feel grateful that the two of them are "teaming up" on my behalf, honest I do. I'd just rather it not be this way. (Dr. Ligresti's first words to me when she called after receiving my report from the hospital were "Why can't you just be boring?") And, after I grilled her about chemotherapy (how long does it take, do you still get really sick, how long until your hair falls out - all questions that nobody can possibly know the answer to in my particular situation because we haven't even GOTTEN to that point yet) she had SO much patience, listened, and said, "Stop talking as if you're definitely having chemo. We don't know that yet."

And, she laughed (sympathetically, not insultingly) through my justification of how I can't have my hair fall out while we are still having prospective members visit the synagogue because really, who wants to look scary to the young children you'd like to attend your school? Any other sane and busy doctor would have simply said "Let's discuss this later." But not this lady. She says I shouldn't worry because by the time we have to make those decisions it will take a few weeks to lose hair and we should be past that prospective member timing. This, my friends, is a mensch.

And, three weeks to the day of my surgery, I still have both of my drains in. Yes, they are still there, and they are still draining, and they still get stuck on everything, and I have lost all interest in keeping track of the totals because it feels like they're never going to go down enough to make them come out. So Rod is recording the 24 hour amounts for me, along with everything else he is doing.

Here's the straw/camel's back scenario: Last Friday morning I called in my drainage numbers to the plastic surgeon's office, as they had asked me to do every day, and the nurse (Pat) said they sounded low enough for us to come on over at 2 and she'd "get those drains out." So we haul to Englewood, she takes a look at the collection bulbs and basically tells me she can't take them out because there's still too much. I joke that at least I'd better get a write-up in a medical journal for this, and she tells me that there was someone with drains for 7 weeks once, but, not to worry, that one had "issues." Seriously?

While I'm there, I calmly and reasonably mention that since it's been almost 3 weeks since the surgery, the Valium I hadn't wanted but that they had insisted I take to relax the muscles had run out and could they prescribe more. No, she says, "I can't do that. Try a glass of wine." I am not a doctor but I'm pretty sure this is not a very professional response. I don't even ask why. (Maybe at that point I look like a Valium addict? What does a Valium addict look like?) Back in hot car, 40 minute drive back to our neck of the woods, and I have HAD IT.

So I called Dr. McIntosh's nurse-practitioner's voicemail, left a completely honest summary of the situation, and not five minutes later she calls my cell and says "Hi, it's Pat. What's the number of your pharmacy?" This is who we call Angel Pat. I can't even come up with a suitable moniker for the other Pat. I'm sure she's a good person, really.

I don't care any more. Frankly, if I thought I could write down that no fluid drained for 3 days in a row and get away with it and then they'd take the damn things out........... (No, I wouldn't. I'm depressed, but I'm not an idiot. If the fluid needs to get out, it needs to get out.)

Here's the thing. I'm worried that something BIG and WRONG (and in my wildest most horrible imagination means another surgery of some sort, and soon) is causing the left side to not be dropping off as fast as the right is, although Rod assures me that the difference between the two is not that great. But, it will be enough to make a determination about whether or not one (or both - haha) could be removed.

Our family's annual trip to Cape Cod is scheduled for next week, and if I still have tubes runnin' out of me, I'm not going. (Because of Andrew's work schedule he is going up a few days later, so I might salvage part of the week if the powers above see fit to have the drains removed in between when the rest of the family goes and when Andrew goes.) So, between the worry that there's really something wrong on the left and the worry that by Friday (that will be going on FOUR weeks since the surgery) I will still have drains, that's a whole lot 'o worry.

Today at 6 we have another appointment with the plastic surgeon to survey the landscape in question and to hold our breath as Rod reads off the last 3 days' worth of 24-hour totals from the drains.

Yesterday morning, Rod made me get up, get washed, get dressed, get HUMAN, and as I sat in all my human-ness in my chair, the doorbell rings (Sunday morning? huh?) and in walks one half (his "better half" being in Europe for a while) of our dearest and unfortunately no longer geographically nearest friends. Garry Karner (who many think is Rod's brother, and might as well be, as close as we are despite the miles between us) flew from Houston for just a day, just to visit me (and Rod kept the secret.) And as much as I love you all and I really don't want visitors because I'm too unsettled in my own skin right now, he just sat and talked with Rod and the boys and we joked and watched TV and went to Kohl's (yes, Elyssa) and sat some more and it was like old times - old, normal, nobody is sick and cranky and uncomfortable, times.

Never say Never

Arent we always reminding our children not to exaggerate just to make a point and then we catch ourselves saying "I've told you a million times" to do/not do something or other? Well, years ago I started using the word "countless" instead. Now there's one less thing I can be accused of being inconsistent about!

Why this is relevant at all to the matter at hand: of all the prescriptions we had to load up on for post-operative care, the one I had steadfastly avoided was the Percocet (oxycodone) - whatever, it's a narcotic painkiller and I was told that if I could manage without it my digestive system would be a lot better off, plus, hello, it's a narcotic. I put away in a drawer figuratively marked "never." So in the meantime I gave in to the Valium and made do with extra strength Tylenol (no aspirin-related products for 2 weeks on either side of the surgery, so no Advil (which is looking real good right now.)

Sometime in the middle of the night on Saturday I woke up in so much pain (from something related to the giant ace bandage, I figure) that I dug through the drawer I had hidden it in, and took a Percocet. And you know what? The damn thing worked. It worked so well that I stayed awake for a while ON PURPOSE just to enjoy the painlessness. But still I reserved it for nighttime.

Yesterday morning I was in so much pain that I called the dr's service and reached Pat. The first thing she said? Did you tighten the bandage any more than when I put it on you? I told her not really, (ok, so I might have just a little, using the "more is better" theory.) And no, apparently I don't know any better by now. At any rate, she said to take the Valium and Percocet together, every 6 hours. Period. Got it. And it's (mostly) working. Not feeling like a walking Zombie or anything, just a little (more) tired after a couple of hours.

Today at 1:15 there's an appt with the breast surgeon and then we go down and across the street (literally) to the plastic surgeon. I don't even know what to hope for any more. If I could end the day with at least one fewer attachment and one more reassurance from an actual doctor that a lot of this stuff is normal and will get better, that would be awesome.

I desperately want to "turn the corner" everyone keeps talking about. Where is it?

It Could Always be Worse

Deep in my heart, I know this is true. That being said.......

Went in on Wednesday for another follow-up with the plastic surgeon. He was very happy with my progress (and the results of his work) and told me to come back on Monday. I know he didn't PROMISE the drains would come out but more than 2 weeks with drains? Seriously? At this point I'm resigned to doing whatever I have to do, but I'm not sure what else I can do. I rest, I take my antibiotic, I'm trying to be "active" and "take it easy" at the same time.

Yesterday was our 26th anniversary, and it is going to have to be a delayed celebration, for sure. Everyone is tired and on edge and we need a collective vacation. I just hope we can go to the Cape in a little over 2 weeks.

This morning, some kind of swelling appeared on the left side and when I called the doctor's office I got a recording that they don't "take calls" until noon through 4 on Fridays. So I freaked out for a bit, called Rod, and then called the doctor again at noon-oh-5....and got a message saying the office is out to lunch and to call back after 2. And the answering service wants to know "is this an emergency?" (At the risk of sounding like the classic Jewish mother-light bulb joke, "don't worry about me; I'll just sit in the dark,) I hemmed and hawed but in the end gave the poor message service guy the whole story and left it to him to pass the information along to the appropriate person(s).

You can't even imagine what was going on here by then (or maybe you can; either way I took a Valium) and Rod charged home on his white horse and announced that we were going down there, NOW. ("Now" is 30 minutes with no traffic on Route 4; so, almost always 40 minutes.)

In the meantime the office called and told us to come right in. When the nurse took a look she thought at first that the tissue expander may have misplaced itself somehow. She left the exam room to call the doctor and left me in tears at the prospect of a surgery on Monday to correct this problem. Given the choice of crying for the 15 minutes she was gone or trying to take a nap, the nap won (been getting my best sleep in the afternoons.)

Pat returned, did some more poking, and announced that the expander seems to still be correctly placed and that the swelling is most likely fluid. So now I have a kind of giant Ace bandage that wraps around to compress the area and I'm keeping it as tight as I can and still breathe. And I'm not looking at it again until tomorrow morning when, if I could catch a teeny break, the swelling will have dissipated a little. I just want to be headed in the right direction. Again? For a change?

There are SO MANY worse things in life than this. But just for a few minutes here and there for the past couple of days, I haven't stopped to smell the roses or counted my blessings even though I know the former are eminently fragrant and the latter so blessedly innumerable. My rose-colored glasses are out for repair.

Rest is Hard Work

Yesterday we went to the plastic surgeon's office for a follow up visit, and saw his nurse, Pat. (Actually the nurses for both surgeons are named Pat - makes it easy to remember.)

She removed the novocaine pump and its tubing, and all of the tape over the incisions. I didn't watch. (And frankly, although the process had been described to me as "completely painless," it was not.) She checked out the progress of the healing, and prescribed some kind of cream to "encourage the capillary action" on a small spot of skin.

Unfortunately, I am not yet divested of the two drains - the tubes that pull out the fluid that accumulates at the surgical sites. They are sewn in place somewhere on each side under my arm (again, not looking, so don't know exact location, and don't really care) and end in a kind of squeezy bulb that is a collection point. Twice a day you empty the bulb and measure what was in there, then write it down. The key to getting rid of the damn things is to be able to empty less than a total of 20 cc of fluid from each bulb over a 24-hour time period. And you can sort of help that along by not doing much with your upper body to cause more fluid to be produced. Pat claims that maybe when we go back next Wednesday I will achieve my goal of unfettered-ness. (To everyone I know who had to deal with more than two drains, you are seriously my heroes.)

Although I have been told that many women go out and about with their drain bulbs neatly tucked in a fanny pack, and therefore presumably unnoticeable, I am apparently not one of them; besides, it's about 90 degrees outside and I have no desire to purposely get that hot and sweaty when taking a shower is such a procedure. Plus, no deodorants, creams, powders, or other such things are allowed for the foreseeable future.

Other than the drains, the only outwardly visible remnants of my time at the hospital are several horrifying-looking bruises on my arm and hand where the IV was and where a well-meaning but badly aiming nurse named Ed tried to move the IV to when my hand got unbearably sore, round about day 2.

Every so often, I think about what has happened to my body, and the complete irreversibility of it is still very surreal and a little (ok, a lot) depressing, despite the fact that it was really a necessary move. (And, yes, I know deep down that I'm luckier than many.) So I stop thinking about it. Seems the best option for now.

There are a few pathology reports that we are still waiting for, and when those arrive then we'll visit the oncologist and see what she advises.

I know my job is to try to relax and heal, which is easier said than done! Many, many thanks to everyone for the food, the flowers, and the lovely emails, cards, and Facebook messages.

This is the first time in about 18 years that we have not been on Cape Cod for the July 4th week. We'll go later in the month when I've got more of this healing thing done - but I still won't be able to help with the driving, packing and carrying, unpacking, bed making, etc.

Looks like one of those silver linings...........

News from the front lines

Actually, I have no idea what the scars are going to look like. For now, I'm avoiding mirrors.
I am, however, home. And the initial reports on the sentinel node biopsy are all clear.

There is some "discomfort" but right now it's almost all in my left shoulder/upper arm area. My guess is that during the surgery they move whatever they need to out of their way and hold it there for a while. The fact that this particular pain showed up almost exactly 24 hours after the surgery is, I feel, not a coincidence and is therefore a muscle injury of some kind. So I'm icing it.

Got my extra strength Tylenol (no advil allowed) my antibiotics and my drain maintenance to keep track of. And then the instructions to sit up straight, walk around a little, practice deep breathing with this Machiavellian plastic contraption,and not lift anything heavier than a teacup or a telephone. (plastic surgeon's words exactly - I couldn't have made that one up.)

Rod helped me with the biggest adventure of the last 24 hours - taking a shower - yes, with all the drains and novocaine tubes still attached Thanks to Elyssa for the suggestion on how to make it a little easier. That worked.

And a HUGE thank you with a hug (when I'm able) to Jackie, who arrived in the house, assessed the situation and started Andrew and Ari into action. In no time at all everyone had a plate of the delicious food Iris had brought over, clean laundry that had mysteriously remained unsorted got sorted and put away, leftovers were stowed in the fridge (thanks to Elyssa's earlier space-making rearranging,) and by the time Rod rolled in at 7:30 all he had to do was eat something.

Hospital details (some) coming when I can sort out what's worth sharing and what's simply whiny. I will say that Englewood Hospital is a world-class medical facility and their staff is, on the whole, very kind and caring. They want you to heal, learn to take care of yourself, and get out of there.

Any misbegotten fantasy about my hospital stay - getting rest, catching up on some reading, studying; in short, any self-centered activity I thought I would have the luxury of doing while "laid up" was simply that, a fantasy. I imagine many of you out there shaking your heads while saying "well, duh!"

Thank you to all for your well wishes, and I am especially grateful that for now they are coming in emails, text messages, and Facebook messages. I am not really up to phone calls or visits from anyone other than a very small group.

Tomorrow we will go to see the plastic surgeon and if the drains are finished then he'll undo those stitches and pull them out. I'm hoping that will trigger a better mental picture for me. We are also waiting to hear the final pathology reports on the sentinel node biopsy and the cancerous tissue they removed. Good news in that department, i'm sure, will make a big difference.

Rod has been most amazing, starting with the hundreds of details he's been managing from the beginning, including his charging around the hospital yesterday afternoon trying to get me discharged, continuing through the shower scene this morning.........Ari not only unpacked and put away all my clothes from the bag when I got home, but sorted a whole basket of clean laundry. He now serves as all-around go-fer and call screener/bouncer. (for all who know him, the picture of my 5'7" beanpole as bouncing anyone is kind of funny, no?) That's why he's a phone bouncer:)

Andrew does what Jackie (gently suggests) says, as does Alex. The whole family is full of caring, concern and will come if I call. (which I'm trying not to do. Gotta do some walking around.)

You know how you start the week on Monday and then all of a sudden it's almost Friday and you wonder where the time went? This week, I'm not wondering at all, and I'm glad this particular leg of the voyage is over.