I am now five weeks out from my primary reconstructive surgery. Things are progressing pretty well, which even three weeks ago I wouldn’t have believed.
I came home zonked out on pain medication, and extremely emotional. I couldn’t get up the stairs by myself, and using the bathroom was a bit intimidating. I couldn’t stand up completely straight (that changed pretty quickly, however) and I wasn’t allowed to use my right arm to lift or pull anything – including pulling myself up the stairs using the handrail. I looked like Frankenstein, with a grisly looking smile-shaped incision on my abdomen, my scabby new belly button, and the constantly changing (not apparently for the better) “boob.” I don’t remember that I had a great deal of pain, but after what I experienced with the mastectomy, I was terrified to get into that particular circle of hell, and kept on top of my pain medication. So I didn’t hurt that much, but I still cried a lot. I asked myself, “What the hell have I done? So I only had one boob, at least I could use my arm, I could bend at the waist to unload the dishwasher, I could clean my kitchen! I could drink coffee, for Pete’s sake!” So I cried and cried, and wished I hadn’t done this thing, and Ken did his best to soothe me, and convince me that one day this would pass, and I would be glad I had done it. One day we were wracking out brains, trying to figure out where my emotions were coming from. Was I afraid of something? Was I simply frustrated? What could be behind it? When my 10-year-old walked into the room, sat down beside me, patted me on the head and said “Poor mama. You need some coffee, don’t you?” I blinked at her, then started to laugh. The grown-ups were twisting themselves into knots, and my little innocent child put her finger right on the problem. I won’t say my emotions settled down after that, but it was easier to coast through them and be patient, and to wait until my post-op follow-up with Dr. Neligan. And sure enough, at my follow-up, he gave me the go-ahead for resuming my regular diet, including coffee. Halleluiah!
When I first got home from the hospital after the surgery, I had to pee every hour and a half to two hours, and there are no bathrooms on the main floor where I spent the first two nights. Which meant I had to wake Ken to come downstairs in the middle of the night to push my butt up the stairs, and wait to brace me from falling on the trip back down. Needless to say it was a HUGE relief to both of us when Ken fixed up our bed so I could sleep in our bedroom, and still have my torso propped up as per the hospital discharge instructions. I still needed his help to get me OUT of the bed in the middle of the night when I had to go, but at least we could cut out the mountain climbing just to get me there. And after a few days, I could get myself out of bed and back into bed, so he could sleep at night again. Until about 3 weeks ago, that is.
One Sunday night, I was having pain in my belly, which, to be frank, felt like horrendous gas pain. I took an anti-gas tablet, and felt a little better. We went to bed around 11pm that night. About 3:30 in morning, after waking with pain throughout the long night, I tried to sit up, or raise my legs, trying to find some position to relieve the pressure, and release the gas. After about an hour of whimpering, I was in the bathroom, sweating and clammy all over, crying in pain, which soon turned to screams, waking Ken immediately and bringing him to the door of our bathroom, asking me what was going on. I was in so much pain, I couldn’t even articulate what I was feeling. I was like a mute cavewoman, not able to understand how to respond to his questions, only crying out in agony. At that, he went across the hall to wake our daughter, after declaring to me that we were going to the hospital. I wasn’t sure I could get downstairs to the car, much less sit in it while we drove to the nearest emergency room – and I was definitely sure I couldn’t make it all the way to the UW Hospital, even though if my pain was connected to my recent surgery, I knew well enough that I should suck it up and go there. But the pain subsided, the sweating stopped, and we all got ready to settle back down to sleep, when another wave of pain hit me, and I was screaming again. That was enough for Ken, he hustled us all down stairs, into the car, and we were on our way to the nearest emergency room, Ken and our daughter wearing sensible clothes, me still in my purple polar bear jammie pants. Yeah, I was looking great.
We got all checked in, when another wave of pain hit, and the nurse quickly put me in a wheel chair and raced me down to an exam room, my husband staying behind to get out terribly frightened little girl settled in the waiting room before coming back to join me. I never like to leave her alone anywhere, but I guessed she’d be safe in a hospital waiting room, especially as she was under the watchful eye of the check-in nurse. She was fine the whole time, though after we were home she told me there was one sort of creepy dude that passed through, asking her if she was feeling bad. No, she said, just waiting for my mom. And that was the end of the conversation.
Meanwhile, I was dealing with my own crap in exam room 8, answering questions, having stuff stuck all over me to monitor my heart, and having countless (I’m not kidding, I lost count) needle pokes, each of the nurses and medical techs taking their turn trying to find a vein, then finding themselves unsuccessful in squeezing any blood out of me. I had bruises all over my left hand for over a week after that. The on-duty emergency room doctor was trying to rule out what my issues weren’t, before he could hazard a guess as to what they were. But, no blood, and after a while I announced I’d had enough, and was ready to check out of there in frustration. We’d been there a couple of hours by then, I guess, Ken going out to the waiting area occasionally to check on the kid, or bringing her back to sit with us – until they got their poky needles out again, then she and dad went back to the waiting area. Ken came back, but the kid decided to call it a night, and wait for me until it was time to check out. The nurse at the check in desk found a blanket and a cuddly toy for her, and she settled down to watch the early morning kid shows on PBS.
In that time, we’d had a shift change, and I had a new emergency room doctor on duty, and after consulting with the doctor just wrapping up his shift, we all decided the blood draw wasn’t going to work, and so decided to proceed with other diagnostics. I have to tell you, I almost kissed him when he sat down next to me and gave me his theory (constipation, not appendicitis or drainage fail), then described the symptoms of that theory, which mirrored exactly how I felt, and which I hadn’t been able to articulate. So he sent me to get x-rayed, which the tech did with me lying down, after the doctor had told me I would be standing up. I didn’t protest however, as I just wanted to get the heck out of there, and so I survived it. About 10 minutes later, after I had gotten back into that torture device called a hospital bed, I needed to use the bathroom. No productive action there, but I made it down there and back under my own power, and without an incident of pain. Yay.
Another 15 minutes goes by, and the doctor comes back to show us my x-ray. Yup, the source of my pain is indeed a surplus of poo, and I was massively backed up. How embarrassing. I’m in the emergency room, and I’ve wasted everyone’s time because of constipation. But at least I’m not facing another surgery. The doctor goes back to write up my prescription (over the counter Miralax to start the next day, after a single 296ml dose of saline laxative that day), and set my discharge papers in motion. Oh, and no more of the prescription pain meds, which contribute to the constipation. I only had one more pill to go, and I wasn’t sad to give it up. Dr. Neligan’s nurse had told me earlier that week that is was common practice to go home with a prescription for paid meds, and to have one refill, and only one. They like to have patients go back to over the counter pain relievers, though you are allowed to call them for something stronger if you need it. The prescription made me feel sleepy, and I don’t think it helped my mood any, either. So no, I was happy to give up the “good stuff” a few hours early for Advil and my regular mood altering substance – caffeine. The good news is, once we got home from the emergency room visit, I didn’t have any more screaming episodes. We had productive visits to the bathroom starting about 90 minutes after I took the yucky tasting saline concoction (which you can buy over the counter at Walgreen’s, in case you need to know). No more cramps or spasms after that, for which I am extremely grateful. It’s nice to be free from mind-altering pain. It let’s you focus on other things, like recovering from surgery and building your stamina so you can do important stuff, like empty the dishwasher all by yourself. So, maybe it wasn’t a waste to go to the emergency room after all.
The lesson I learned after the first surgery – stay on top of pain medication. The lessons learned after this surgery – 1) Stay on top of your pain medication, but get off the prescription crap as fast as you can. 2) Sometimes the simplest answer is the solution to a great problem. Oh, and 3)When the discharge nurse tells you to get some Miralax and take it, it’s not just a suggestion. Fool.
Grieving what was
I’m grieving today. Grieving for the young woman I once was. I didn’t appreciate what I had at the time. I guess everyone wants what they don’t have, somehow believing it better than what they do have. I regretted my large pores, my broad forehead, my prominent chin.
Like most women, I tried in vain to shrink my pores.
For a long time, I wore my hair long, and kept it pulled back from my face, even as I looked at my reflection in disgust, considering my giant forehead.
And I actually considered plastic surgery to “dock” my out-there chin.
Fool. Looking back at photos of myself at 25, all that I see is how beautiful I looked. All twenty-somethings are beautiful. They can’t help it. You’re young, your skin is taut, and dark circles under your eyes just make you more fascinating. It means you have an interesting life, outside of your work life. You roll out of bed, messy hair and rumpled clothes, and last night’s makeup. You look gorgeous. You don’t believe me now, but when you’re 40, look back at pictures of yourself at this age, and you’ll see I was right.
I look back at the image the 25-year-old that I was, and I grieve for what has been lost. The youthful outlook, the anything-could-happen-so-everything-wonderful-is-yet-possible mind set.
I’m no longer that young woman, with the quick, light step. I still believe anything is possible, and I will always believe in hope. But I have to hold onto that based on faith – I don’t have the energy I once had, and I sure don’t have the physical resilience I once had. And now I accept the fact that I am mortal. I don’t think I fully believed in death and mortality when I was in my 20’s. It seemed so far away, as to seem like only a story. Yes, that happens to some people. But not to me.
But today, I am disabled. At least for the foreseeable future. That is a hard truth to come up against. I am not what I once was. And I never will be.
I am strong. I am powerful. But I now walk with a shuffle and a little bit of a limp. I walk like an old woman.
In my mind, I see the image of who I was 25 years ago, and I see a young woman skipping down the escalator at Westlake Mall. I remember a young man, a stranger, approaching that woman, and asking her to have lunch with him, because he is so drawn to her.
Then I look in the mirror, and grieve.
I sit at my computer, and my hands begin to tingle as I type this. Shortly they will feel numb, and I will have to stop.
I get up from the computer to walk into the living room to rest my hands. I shuffle along, because my hips are stiff, and my legs ache. Where is that girl with the light step, now, I wonder?
I sit down for a while, putting my feet up, to take the pressure off my knees and my hips. I can’t knit, because that hurts, too.
I try to relax, and I have stabbing pains in my heel, I assume from neuropathy.
I am disabled. But I am glad to be alive.
Monday and Tuesday AM it looked like we were going to glide into an easy recovery….
That may be why Tuesday was crash day for me. Late Monday night I hit a wall of stress after we did her first shower. Surgery drains, newly uncovered stiches, plastic to keep things dry etc. Once we finished the stress of not “breaking” Tina hit me and then some. Pretty sure I am releasing stress I felt very little as I managed the last few days.
I slept hard.. and then Tuesday morning was mentally exhausted.
Tuesday AM Tina was up and doing chores.. I told her not to….
Then something got pulled there was sudden pain and the last two days have been tougher.. Periodic pain spasms etc. I seem to remember my triple wisdom teeth extraction was like this… it got better for 4 days then I had 1-2 days where it was really bad.
She is healing and we are in communication with the DRs… but right now pain management seems to be #1. Her surgeon thinks it may be that she didn’t keep ahead of the pain.. from what I see.. pain hits. creates stress .. creates more pain… Lesson of the day.. when you get a body part cut off.. its ok to take pain meds for a few days and not worry that you don’t really need them..
Thursday AM.. I am getting a bit better sleep but needing to use ZZZZQuil tabs to get down the last three nights..
I totally checked out from work…the last two days (which I hate… but I was mentally useless for intelligent work) watching email for emergencies etc. but I thought we were on track for an easy recovery week one…. not so much..
Michaela is sleeping on the couch to be close to mom.. and has been doing a good job letting me know if Tina needs something.. What good kid.. but I worry she is stressed and not willing to talk about it.
At some point we might get her some time with a consoler ….just to make sure.
Tomorrow we see Dr Javid who has been great this week.. even dealing with a problem where her resident didn’t return 3 calls in a row.. (she dealt with that pretty fast and it never happened again…)
And for those keeping score at home and who have bets pending with Vegas bookies… pathology game back…
- Tumor… 12 Centimeters (5 inches!) Sorry for those who bet on a more normal size…
- Single Mass… Good…
- Clean Edges Good…
- No skin or chest wall involvement.. good..
- 2 lymph nodes of the 24 removed affected good given the size…
That makes the final stage 3A which is where we were last week…. Sorry I have checked with Vegas and no one had all it all right.. so no jackpot winners this week..
Joking aside it was big hummer..that came from no where and was undetectable 10 months earlier by a DR doing a breast exam, and was even hard for them to spot on imaging when they were looking for it… Get your tests.. do your monthly exams etc.and get weird stuff looked at right away people!!!
That said it appears to be a lazy SOB of a cancer which is good..content to sit in one boob and get fat vs going out to explore.. so in general pretty good news.. Given SCCA’s stats on all stage 3 cancers.. I think we still have a very positive prognosis…