Wednesday, February 22, 2012

Get out your eyedrops, this one is going to be long!

Ok, deep breath for the huge catch-up post! I'm on my laptop today, able to sit at the kitchen table and type, which makes it easier. I couldn't fathom trying to do this from the tablet!

So, up to speed.

Tuesday, February 7th: Andy and I head up to Birmingham, where we first meet with Dr. Fix and his resident, Dr. Killingsworth (where do they get these names for plastic surgeons?). We discuss any further questions regarding the surgery, then I get marked up in blue Sharpie. The markings include lots of what looks like code, where Dr. Killingsworth identifies the major areas of blood supply on my abdomen as they showed up on the CT angiogram I had done a couple weeks ago during my day of pre-op testing. I ask Andy to take a picture before bed, but I haven't decided whether I'm going to post any of the pictures yet.

After the markings are done, I go to Nuclear Medicine for a lymphoscintigraphy (not necessarily for the faint of heart - but if, like me, you're incessantly curious about this stuff, go for it. There are no pictures), which is the procedure done to identify my sentinel nodes (the ones that, if the cancer has spread, it would go to first). Some of these nodes will be removed during surgery to check for spread. The procedure takes about an hour per breast, and while the folks who work with me are absolutely wonderful, including letting me use my own handknit blanket and gushing about my knitting, the procedure itself sucks. Between the two sides, I'm allowed to get up and move around, as I have to stay so still while they're working. I see a piece of paper nearby with my name and birthdate and in big bold caps the words DIAGNOSIS: BILATERAL BREAST CANCER. Obviously this isn't news or anything, but something about seeing it that way - so stark, so simple - begins crumbling my hard-won calm. I make it through the second part of the procedure, and am delivered back to ever-patient, ever-waiting Andy. He's told what an incredible patient I am, how I never complained, stayed still, did great. The second we're alone though, he immediately puts an arm around me and says "what's wrong?" and I tell him that's it, I've hit a wall. I have no more procedures in me. It's a good thing surgery is tomorrow, I say, or I don't know if I could go through with it. The sheer number of procedures I've been through at this point is staggering and I'm just done.

A friend and neighbor with whom I text frequently tells me to head back to the hotel and give myself a half-hour to lose my shit. Cry, tantrum, wail, have an epic pity party, whatever I need - but for only that 30 minutes. I take her advice, and at the end of the time she texts me "ding ding, time's up." Andy and I head down to the manager's reception, have snacks and I get a "baby" white Russian (translation: I can't hold my liquor, so there's very little actual alcohol in my drink). Afterward, we go for a long walk in the area around the hotel. I'm calm and the walk does a world of good. Then we have a lovely dinner and dessert. I take a Xanax (yep, a whole one - those who know such things about me should get a chuckle out of that) and am actually able to sleep.

February 8th: When I get up, I decide that I've got a choice: fear or tiara. If you don't know the deal with tiaras, watch this:


Andy expresses some concern that hospital folks don't care for things that are out of the ordinary, and I tell him that this time, I can't care. I'll comply with everything - I have all along - but damnit, I need something to keep the fear at bay, and this is what's going to do it. So I proudly don my tiara and we head to the hospital.

Unexpectedly (to us, anyway) for 5 a.m, the place is a madhouse. There are dozens and dozens of people there; some of the patients have brought their whole families, many of whom are decked out in various states of pjs, complete with blankets and pillows! I go to the desk and the attendant grins at me. In the chaos she deals with every day, apparently my willingness to show up in a tiara makes her day and she's tickled, which in turn eases my fear a little more. We sit down and I start knitting a chemo hat. Picture it: Andy surfing the Web on his phone, while tiara-clad me knits calmly, in a sea of half-asleep people who don't make eye contact with anyone else. Wait, that sounds a lot like our usual life, now that I mention it!

I'm taken to pre-op to get undressed and into my styling surgical garb. I put the tiara back on over my fashionable haircovering, and am helped into a Bair Paws gown. This thing is amazing - it's got its own heat supply and I can set it to any temperature that makes me comfy without affecting anyone around me! Once I'm settled a nurse brings Andy back. All the staff are thrilled with the tiara, agreeing that facing a surgery like mine, anything that helps with the fear is worth doing. My nurse agrees to let me wear it into the operating room, and while I have to take it off when we get there, she promises to wear it for me (and she does, we have a picture to prove it). I'd gotten some sedation in pre-op and am a bit sleepy but still awake and talking. This is me starting to get stoned:


I'm wheeled into the OR and with help, I get onto the table. I'm pretty far gone by this time; the last thing I remember is weakly mock-arguing with the nurse about the tiara. One of the nurses tells Andy later that at the last minute I got agitated and scared, right before the muscle relaxers hit and I went limp and was out. Fortunately I have no memory of this, but it's not really surprising.

I'm in OR for a marathon 13 hours. It's normally a long surgery but mine is a bit longer as I'm told there were blood supply issues that mean my left breast is now partially pieced together with abdominal skin rather than only being the outer shell of original breast skin, and Dr. Fix had to take a layer of a small area of muscle from the left side of my abdomen. (I learned at my post-op appointment that they are reconstructed from opposite sides - left abdomen/right breast, right abdomen/left breast. I found that interesting.)

An aside: apparently not everyone received texts or didn't feel they received enough updates. Let me tell you how Andy described his day, so nobody feels hurt or slighted. He was in a large waiting room with all the other 5 a.m. family members. There weren't enough seats, and while he had decent wi-fi, he had little or no cell service. In order to make/receive calls or send/receive texts, he had to give up his seat and go downstairs to an atrium area, at which time both phones - he had his phone and mine - would explode and he'd have to answer all those calls and texts. He did this a few times throughout the day, but he couldn't leave often, because any time he did he had to check in and out with the attendant, since the waiting room is where nurses and doctors expect to find family members to give update. My surgery was so long that the waiting room began emptying out, until finally Andy was the only one there, with even the attendant having long gone.

I'm brought to my room until sometime between 11-11:30 that night (and remember, we had to show up at 5 that morning). Andy said that I was so deeply under they gave up trying to wake me, and he was astonished that I snored (I was under anesthesia, shut up) my way through everything the nurses did to me. I have no memory of anything from pre-op til around 3 a.m. at which time a lovely nurse was with me, working on my vitals.

From this point on (and probably before, I was still out) I'm woken every.single.hour. They have to listen to the new blood flow in my breasts with a doppler and make sure it's taking properly. So between that, vitals, meds changes, twice daily unholy-painful Heparin shots and all the other assorted things nurses do to torture patients, I only get what precious little sleep I can snatch between those hours. Fortunately I have little nausea, though the antibiotic I'm on makes my mouth feel as though I've licked metal, so nothing tastes good. I drink my weight (at least it seems that way) in ginger ale, and only eat bland oatmeal for breakfast. Day 2 post op Andy shows up with a giant Starbucks mocha and metal-mouth or no, it's the best thing I've ever tasted in my life.

Mid-morning the first day post-op my catheter is removed. I'm told it may be awhile before I'm able to go to the bathroom, and not to worry because that's normal. They haven't met me: I'm stubborn as hell and I am not letting petty things like peeing get in my way! I've managed to go by the afternoon, although what an ordeal: every time I have to go, I need to call the nurse so she can unplug me. I'm on oxygen to boost the new skin and blood supply, inflatable lower-leg massagers over compression hose to avoid blood clots, and the biggest IV I've ever seen (it's got my antibiotics, fluids, pain pump, and periodic other meds). Every one of those things is plugged into the wall. I hate calling the nurse for anything, but I simply can't so much as get off the bed without help. I shuffle-walk to the bathroom since I can't stand upright yet, the nurses celebrate (as they do every bodily function for the next two days, which is odd as heck and makes me think nurses are amazing people who maybe need to get out a little more), and afterward I decide to sit in the recliner, which is where a surprised Dr. Fix finds me when he comes in on rounds.

Saturday (for those of you keeping track, day 3 post-op) I'm told I can go home if I feel up to the 4-hour ride home. I'm going. I need to sleep, I need to be with my son (one Skype chat the evening before helped him tremendously, but he needs his Mama Llama!), I just want to be HOME. I'm going. After lunch, we head out and everyone is amazed. It's hard work, as I have 5 drains that have to be managed, but I get some decent sleep and by Sunday morning I already feel much better.

Fast-forward to yesterday (I could post a lot more but I know that actual people with eyes read this, and I would like you to avoid long-post blindness and boredom if it's not too late!). We go up to UAB and see Dr. Fix and Dr. Killingsworth. (The second the nurse comes into the room I start to cry. Andy asks me why, and the best I can tell him is that I am still just procedured-out. In my online support group we talk about breast cancer patients having PTSD, and it's really true.) All but my lower drain are removed, and it's so freeing to be able to move around better and not have those things attached to me anymore! We go to a restaurant - my first time since the night before surgery - and I manage to go into Target to find a bra so I can get out of this surgi-bra contraption. The thing is horrible! It's not soft, it's got exposed seams, I don't know who designed it but I hate it. We can't find anything I can wear, so we get back-extenders for the sports bras I currently own. I'm technically a cup or two smaller but there is so much post-op swelling that I temporarily need everything I wear to be looser than I expected.

So you understand: I've had a huge amount of abdominal tissue removed - not technically a tummy tuck, though down the road it will look similar - and both breasts basically hollowed out and reconstructed with the abdominal tissue, with part of the left one having some abdominal skin on the outside. So I'm sort of... pieced together, I guess you could say. The skin on the front of my torso is very tight, and for the first week or so I have to be very careful, as I can't stand upright yet and it makes my back ache fiercely and near-constantly. Now, though, I am doing really well. I'm hard-pressed to believe I'm only 2 weeks post-op; while there is a lot I can't do and won't be able to for awhile (some due to physical limitations, some due to doctor-imposed limitations to facilitate healing), every day I try to celebrate at least one new thing I can do: the day I sit at the kitchen table for a meal, dress myself, put on my own socks, walk outside, make my own cup of coffee, and so on. Celebrating the little things and paying attention to our bodies is something we neglect in our busy day-to-day lives, and since my life currently revolves around healing and resting, I have time to be very slow, and to observe these things that seem so small, yet for me, right now, each is a huge milestone.

Aside from the recovery going so well, the other great news is pathology: I am cancer-free! There was no lymph involvement, no spread at all. The tumors were still contained and no cells had broken out, meaning I don't have to have chemo! While I know a lot of people considered my treatment choice unnecessarily aggressive, reading my pathology report validates that I made the right choice. Not only do I not have to undergo radiation or chemo, but it's likely that had the cancer not been found when it was (or had I chosen lumpectomy instead), at some point in the not-too-distant future I would have had both, in addition to still needing the surgery I've had. This would have been after I'd had lumpectomy already. So basically, I cut it off at the pass and now I can recover and begin to piece my life together post-cancer.

Thank you, so very much, for reading this far. It means the world to me to know that others find my words meaningful.

6 comments:

wintermoon said...

You are so incredibly amazing. I can't even imagine the strength and courage you've drawn on to get through this ordeal, and I know that I'm just one of bob-only-knows-how-many who have been sending you immeasurable amounts of love and mojo through all of it.

I read every word of this, and I laughed at the doctors names and cried happy tears at the accomplishments and good pathology reports and sent retroactive hugs to the scared pre-op llama.

I sincerely hope that my texts during your surgery weren't adding to Andy's stress levels. I had no idea he had to go somewhere else to receive & respond. Please tell him that as your friend receiving info to pass on to my own family and the Pants, I am eternally grateful for his responses and his patience. He's awesome.

Thank you so much for the update. You've done some amazing stuff and been through some scary shit, and you're sharing it all and I'm honored.

Marla said...

Thank you for sharing your odyssey with us, Melissa. Your strength during this ordeal has been awe-inspiring. Sending lots of lots and curly haired karma, my friend!

Jan Conwell said...

I'm glad you broke down the basic process of what you had done, I wasn't understanding it before. Soooo glad the prognosis is so good! Yes, the little things make a difference once you can't do them anymore.

I had 1/3 of my colon removed in 2010 and during the recovery, my first poo a giant celebration!

Keep getting better and better.

debbie hagen said...

You are incredible. The degree of skill in writing about this conveys so many emotions. I laughed and cried at the story, even though I know that so much of the fear and anguish you felt has been hidden by the reality of it all. I am so grateful to read this and know how you are doing. I am sad that you are having to go through this at all, but so proud of you for the way you are handling it and especially how you are sharing this with everyone. My love to you and your "guys".

C heryl said...

Eye drops - no-kleenex yes! I am so lucky to know you. Perhaps one day we can design better bras for breast cancer surgery patients together! I loved the tiara-and watched the Big Bang episode again. I love you dear friend. I am blessed beyond words to have you in my life.

Amy McWeasel said...

Thank you, lady, for taking the time to share all this info. I think you & your family & your caregivers are all amazing. <3