Partly Cloudy!

How can you tell if things are looking up if you're not supposed to be looking?  I think that's a paradox, or a dilemma, or something like that.  Having been given (and taken) the great advice that not paying too much attention to the depression is the first step towards it not ruling my life, how do I know when it's lifting?  Is it "getting better" on its own?  Or is it the very small (but nightly) dose of an anti-depressant medication?  Is it my one (not miraculous but hopeful) visit to the woman who I think will be my therapist for a while?  I don't know and don't care.  But I do know that I'm hungry and eating.  And I'm laughing at bad summer sitcoms.  And I'm having real sessions of industriousness. And the last time I cried was..................

on Thursday night around 7:30 when my oncologist Dr. Ligresti called me to say that I will not need chemotherapy.  So I think they were tears of happiness and/or relief, but whatever;  it was emotion, and I really hadn't felt anything in a while.  She told me to come in to see her in 2 - 3 weeks to get going with the Tamoxifen because one of the side effects is (yep), depression, and she doesn't want me to start until I feel better.

I really did think I had myself geared up to do whatever treatment she felt necessary and I would be okay with it, but I guess my reaction told me otherwise. 

Even before she called, though, I was getting ready to move up my next appointment with Dr. D'Amico to earlier than the end of the month. I feel like I've got to get going with the de-construction and subsequent reconstruction of Louie.  He's a pain in my side, almost literally.  The more he sits there, like a rock sitting on (sometimes digging into) my ribs, the more constantly I'm reminded that I've got equipment not installed in the factory, so to speak.  Ralph I occasionally forget about, and to have times when I don't think about either of them would be the best mental health boost of all.

In the meantime, I've also been trying to figure out why I have resisted visits from so many of you - the wonderful, the amazing, the cheering section extraordinaire.  It's not that I didn't think you could "cheer me up" and it's not that I'm afraid to have people see me.  And it's certainly not that I don't want you to notice that the house is messy.  After all, if you were a friend before all this, you probably already knew about (and in many cases have personally witnessed) my lack of housekeeping skills.  Whether it's a watered-down inheritance of my mother's insistence on privacy (which is really ironic considering the blog) or whether it's my own personal grasp at control in a situation where I have none,  or whether it's something else entirely, I have no idea.

It may be this way until after my final surgery, or it may be less of an issue once Ari gets back into the swing of high school unscathed, Alex, ditto with college, and religious school  (and the whole synagogue season) gets into its regular rhythm.  There's always some level of anxiety and apprehension about that stuff at the end of the summer.

Whatever it is, I'm (paradoxically) working my way out of my little fog by not working too hard at it.  But, in the same way you never really trust the weatherman (or even weather.com) until you see for yourself what it's like outside I need to just "do" and see what happens.  Meanwhile, my partly cloudy is quite an improvement over the leaden skies of less than a month ago.

(Today's weather here in northern NJ was stunning, wasn't it?)

Why Did the Depressed Chicken Cross the Road?

This is a trick question, of course.  The depressed chicken does not cross the road because she cannot get out of her roost in the morning, never mind look both ways for oncoming traffic.  I suppose if she were me (duh) it would be "to get to hertherapist's office, to take her kid to camp, to get to her workplace that she loves."

This chicken is successfully getting out of the house now.  Without crying first.  And she laughs sometimes and is actually hungry and eats. Small steps.  This entry is one of those steps.........

The weather on Cape Cod was lovely, and it was great  to see my dad and brothers and their families, and for my boys to spend some time with their cousins.  It was hard for me because I couldn't (didn't event want to) eat one whole lobster, or finish a whole chocolate frappe (that's what we call them up there - kind of like a milkshake but not exactly) or more than four steamers out of the order.  I didn't want to spend endless hours studying Hebrew grammar, translating sentences and figuring out verbal tenses, unraveling the mysteries of the dagesh, that mysterious dot that pops up where it seemingly doesn't belong.   I didn't even read much.  I didn't want to get out of bed, and when I finally did I couldn't wait to get back in. 

And of course the first few days Rod & I spent much time examining the infected area on the left to be sure it was getting better.  (It took two days for us to realize that our bedroom and bathroom at the lake house are wallpapered in pink and everything took on a pinkish hue; so for a while there was constant stress that it just wasn't getting better until we decided to take a look out in the white light of the sun.) By Monday already I knew that part was getting better but something else was not right.  I should have been so relieved, so happy, so excited, but nothing.  It was beyond sad, and although I usually leave the internet for games and curious facts about famous people, I looked up the classic signs for depression and there they all were.

So, I put in a call to our primary longtime beloved physician and he prescribed something called Celexa, 20 mg.  The local CVS obligingly filled it and the next day I was not only depressed but also now nauseous and yawning through most of the day.  Lovely.  So I called and was told that a) it takes at least 2 weeks to "kick in" and b) to cut the pills in half.  And that's what we did for the rest of vacation.  (We've since changed to 10 mg which we're cutting in half, and I'm willing to give the thing a shot as long as the side effects are minimized.)

I also needed a person, so took recommendations from people I trust for someone to talk to.  More about who I've chosen when it happens, but I've been to one and I've got another booked for next week.  Hopefully that process will get on track soon.

I am trying to stop examining my own psyche to try to "fix" what I perceive as "broken" in myself.  As I was advised by so many, I am trying to just "do."  One foot in front of the other.   And I think it's getting easier.  (Oops, there I go self-examining again.)

On the physical front, I'd like to introduce Ralph and Louie, my reconstructions.  I've decided that it's more fun than "right" and "left" and it made the plastic surgeon smile (me too.)  So call it my refusal to come to terms with reality, call it silly, but too bad.  For now, they're Ralph and Louie.

I went in to the plastic surgeon and told him that mentally I was not ready for him to keep enlarging Ralph while just waiting for Louie to get completely well (or explode, or whatever.)  Because of the previous radiation, he remains convinced that we will be going ahead with the latissimus dorsi (sp?) procedure on that side, and I think he's right.  It's one thing to be a little different, but Louie's more of a rock than he ought to be, and not in the supportive way one usually uses the term "rock."

Doctor D. gave me "off" until the end of the month to be ready to make the next moves, which are: Under minimal anesthesia, in a brief procedure he will remove Louie's expander, and then wait for the area to heal.  During this time he will (very) gradually expand Ralph to a "final" desired size.

Then, (and hopefully in just one surgery,) he will do the new reconstruction for Louie involving my back muscle, and also put in both permanent implants.  That's at least a 72-hour hospital stay - no fun but hopefully with an outcome everyone can live with.  It's a lot to digest but for now, one step at a time, like I said.

In the meantime, we have also met with Dr. McIntosh (breast surgeon) who gave me the results of the Oncotype test.  My score is 8, which she says is very good and to her indicates no chemo, just Tamoxifen or whatever the appropriate thing is for my age/hormone count (something like that.)  She said this unequivocally and (I felt) without fear of my being told something different by the oncologist.  Dr. M. also told me to come back in a month, reiterated that she definitely wasn't going after more lymph nodes (there apparently having been recent studies showing she was right, and it isn't necessary or useful) and gave me the words to tell Dr. D'Amico that I needed a couple of mental health weeks.  If you need her, and I hope you don't, ever, you should use her.  She is awesome.

I called Dr. Ligresti's (oncologist) office to see if they had the test results and when I should come in to talk. She had just returned from being away and was completely "snowed under" in paperwork.  Her receptionist asked if I could call back next week to make an appointment.  She said they had also received the results and, when I said "looks like I should be happy, right?"  confirmed that this was "good" news.  (Here it should be noted that ordinarily receptionists for my doctors do NOT say anything like that.  I'm pretty sure they're not allowed to because, well, nobody wants to get sued for their employee giving out information that later turns out to be inaccurate.)   And these people are very professional.  So, I distill from this that the woman has seen a lot of these results and felt very safe in saying what she said.  And that's what I'm going with until I hear otherwise. 

Meanwhile I've been back at work on a "gentle" basis.  Alex, for one, is relieved that I'm driving again but Alex, (and Ari, and Andrew, and Jackie, and Daddy, and above all, Rod) - you have been and continue to be my champions.)  I love my family, I love my friends, and I love my job.  I just can't seem to "feel" it or "live" it or express it and it's frustrating as all get-out.

Tonight I'm going to lead services with my friend Evelyn, and although I'm completely prepared (we've been doing this annually for going on ten years I think) I'm nervous and a little bit excited.  And now I'm hungry too so I have to stop writing.  Besides, you all have been patient enough already:)

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...........