Hickory Dickory Dock

 A shower day. Those are exhausting. I probably should be showering every day, but both Dave and I are tired and adding the stress of showering to the thrice daily dressing changes of the wound on my now less smashed up self is sometimes too much, so showers are only happening every 36 to 48 hours. It's the best I can do right now.

But even with all that (and not even knowing if I'm making sense right now), there were no tears today. (Also, my period finally ended after, like, ten days, so maybe that has something to do with it.)

The infection is clearing nicely and the edges are starting to close up. We have to remain vigilant, but for the moment things are going the right way.

This is how out of it I am: I was reading the news and saw a headline that surprised me, so I had to confirm with Dave: "Are the winter Olympics on right now?" Turns out, yes, the winter Olympics are going on right now. That's a thing that's been happening in the world while I've been here in this hotel room.

And it was sunny today. So that's good.

My meals today consisted of a chicken and roast beef half-sandwich on sourdough with mashed up avocado, an easy meal to make to take with my antibiotic. A bowl of oatmeal with sunflower butter and soymilk and added collagen supplement. A repeat of the chicken and roast beef half-sandwich with my second dose of antibiotic. A half sandwich of Swiss cheese and mashed avocado with some baby carrots and cucumber slices. Half of a protein bar. Then, after my shower when my blood sugar was dropping and I felt faint, three tiny cookies (like, literally the size of a quarter) and two Werthers and a cup of soymilk. Then dinner --frozen chicken gyoza and tofu and some pre-cooked chicken--with the third of my four daily doses of antibiotics. Later, I'll have some more chicken with the fourth and final dose of my antibiotic.

And though we've been doing three bandage changes a day, I think today we'll do two so Dave and I can get an extra hour of sleep tonight. (God, don't let this decision be the wrong one.) At some point, we have to prioritize rest as an important part of healing, right? Strike a balance. Anyway, we'll pick up with the three dressing changes again tomorrow.

I have the energy for one more visit to the toilet and then to get into bed with Dave's help. I think I'll fall asleep to Pitch Perfect. (For awhile anyway, since I take my fourth dose of antibiotic at two a.m.) 

Tedious Tedium

Another long day in the hotel room.  They tested the hotel fire alarms this morning. It seemed to go on and on but was probably just over 10 minutes. Strangely, they also tested the fire alarms in the hospital the night I was there.  Maybe it's fire alarm testing season.

Speaking of seasons, it was fall out early winter here yesterday and today it's spring.  The sky is blue and it's still chilly but nice enough for us to have the balcony door propped open. 

We texted the surgeon a photo of the current state of the infected part of the incision and she said it's looking really good and on the right path.  Well see her on Monday to have her look at things since we'll be traveling home and back to our pitiful little state's archaic medical system next week. 

Please, do not get me started on trying to arrange follow up care once we return home. 

I napped in the afternoon, had a snack with Dave and took the last dose of azithromycin, then we changed the dressing over the incision. 

Just after surgery, when I was the most smashed up and needed all the help for all the things, I didn't care about dignity and it didn't matter who saw my smashed up self. Now I'm feeling naked when I have to strip down to the waist to change the dressings on the incisions and that feeling of nakedness and embarrassment is made worse when we forget to close the curtains. Our balcony looks out over a busy intersection, because of course it does.  I'm sure no one or nearly no one looks up into our room, but they could, and if they did, they would see everything. 

And I misjudged the timing of the Tylenol I've been taking for pain so the dressing change felt extra painful. The surgeon has a very mild manner and she had said something about pain increasing with wound care and as the affected area healed and it was so under the radar that the pain of it initially took me by surprise. I leaned a bit on the Tylenol with codeine and now I'm down to my last few of those. (The initial prescription was for forty of them--FORTY--and I had laughed because there was no way I was going to get through forty pain pills. Now I'm looking with dismay at the last five of them in the bottom of the pill bottle and wondering how to deal with this situation. Should I just double up on the Tylenol 325s we got over the counter or cut the last five in half and take a half with a Tylenol 325...because there's no way I'm up to facing the pain of this situation sans medication. 

And everything hurt more than it should have. 

And the wound wash spray felt incredibly cold when it hit my side and ran down underneath the towel that I had wrapped around my waist. 

And I just cried. 

When we were done with the dressing change, I put my thin nighty back on. Dave pulled the curtains all the way closed. 

Bites of Reality

 Cloudy, dark, and rainy in Miami today. People cruise by on the street in heavy coats and hats. I saw one woman wearing ear muffs. It's the coldest they've ever been in their lives, looks like. It's around 62 degrees.

The infection is getting better. I'm on two oral and one topical antibiotic and over the last couple of days, the pain has decreased considerably and the margins of the incision are much less pink. The other signs are those that the surgeon said would happen as the infection clears up and the wound heals. I chat with Kelly via text and she says she knows it's tedious, and that is the perfect word: Tedious. It's tedious taking care of this smashed little bit of myself. Though the burden falls really on Dave, as I can't reach the incision myself, at least not easily. (It's in my left armpit--or "axillary" as medical professionals say.)

All morning I have little zaps along the incisions. These are very common. Are they from nerves coming back online, testing the waters? The surgeon was surprised when I told her that I had feeling in the grafts from day one. The right was more pronounced than the left, but both have always had some degree of sensation, maybe even more than before. Some people go weeks or months (some even longer) before feeling returns--if it ever does. Our friend who had top surgery over a year ago says that there are parts of their chest that still don't have feeling. Me? I practically never stopped, even though 90%+ of my breasts are history, what's left behind have all the feelings apparently.

The day the surgeon had to replace the suture in my left axillary, she said, "If you can feel this, I'll buy you a drink." She thought the nerve blocks she had put in me the day before would still be in effect. She owes me a drink for putting a suture in with no anesthesia. (She gave me a shot of lidocaine there later and that numbed it for a few hours, but it was shutting the barn door after the horse had made a run for the hills.) 

The zaps feel like it when acupuncture needles are pushed through a nerve or set off a nerve near them, a quick little but fierce crackle of electricity. They last for a few hours and then go away for a day or so.

So that's fun.

And I'm not sleeping.  I take one antibiotic every six hours and I have to stand up for half an hour then sit upright for half an hour after I take it or else it triggers gastroesophageal reflux, a kind of bitterly cruel heartburn that resists treatment and lasts for hours if not days. Standing up for half an hour is a fun thing to do at one in the morning. I wake Dave up and have him help me get out of bed. Then I made a snack because I have to take the antibiotic with food. After that, I'll stand at the sink and wash the dishes I've just used. Then I'll wipe down the kitchenette counter and straighten things up around the room. I do the NYT puzzles that are released at midnight. Then I sit and journal for awhile or read something on my phone. After an hour, I wake Dave up and ask him to help me get into the maddeningly tall hotel bed. Then I sleep on and off for four hours until it's time to wake Dave up again to help me out of bed. Sometimes, I sleep for an hour and then have to wake Dave up to help me get up to use the toilet because I drank too much water with the antibiotic...

Dave may be getting even less sleep than I am. Plus he's still doing work things during the day and going out to pick up groceries and prescriptions and coming back to do dressing changes and help me shower...I have no idea what I'd do if he weren't here.  He's the real MVP here, is what I'm trying to say. 

And my period goes on and on and on. It's day...let's see, day eight or nine now.  

And this afternoon, there was a piece of tape holding one of the bandages on that was pulling on my skin in an uncomfortable way so Dave peeled it off and with it came a bit of my skin. Being skinned, even on such a small scale, and tired and anxious and scared and full of too many medications was too much and I just broke down and cried for awhile. Dave comforted me and cleaned the area with hypochlorous acid spray and put a bit of Vaseline on it and then I felt a little better.

He went out again to pick up a refill of the prescription antibiotic ointment that we are using. He brought back some kiddy watercolor paints (I stupidly brought no art supplies with me on this trip, just a journal and a few pens), a pencil sharpener, and some glue sticks. These were added to the Crayola colored pencils and multimedia art journal he picked up for me at the Office Depot across the street yesterday. I have a little set of art supplies now. Yesterday, I drew myself--my new self--and marked the area of infection and drew the antibiotics attacking those areas. I also drew a cross between a dog and a bunny in a Peter Pan collared shirt. And today all I had time for before dinner was to do a quick test of the watercolors and to discuss with Dave what color he thinks teal is and how it differs from what color I think teal is.

Then we had dinner--rice bowls with faux "beef" bulgogi for Dave and chicken and roast beef for me, vegetables (kale, carrots, cauliflower, yellow squash and cucumber slices). I finished half my dinner, stood up, took my antibiotic, and finished my dinner standing up. Then I did the dishes, straightened up the room...

And now it's time for another bandage change.  

 

Alive and Kicking Like A Rockette

 So there is some infection in the incision under my left arm. The surgeon looked at it, cleaned it really well, gave me yet another two antibiotics (one oral, one topical) and then showed Dave how to dress it. We'll have to do dressing changes three times a day (she suggested two, I suggested three and she said if I could stand it, it would be better to do three). Then she gave us some wound care materials (sponges, saline wash, povidine swabs) to use. 

It's not a comfortable process for any of us, but at least I have Tylenol with codeine to help on my end. 

We came back to the hotel room and changed the sheets on my bed. (I'm using disposable sheets because I don't trust hotel sheets.) I was exhausted by then so I lay down. Poor Dave's day continued. He went to Trader Joe's to pick up some provisions, then to Walgreens for the new prescription, then to another grocery store for soy milk and a few things that Trader Joe's doesn't carry. After he got back, I took more pain meds in anticipation of the next dressing change.

The surgeon thinks it should take about five days to turn things around. We'll only be here another seven days, so hopefully that prediction is correct (and we don't end up in the ER with me on IV antibiotics). 

I just took the second antibiotic--Cephalexin, 500 mg--so now just waiting for the anaphylactic reaction to kill me. (This is how my brain works, in case you were wondering how health anxiety manifests itself in my life.) 

So far so good. But it's only been about five minutes. I'm still alive and kicking.

We took an Uber to the surgeon's office, the second time I've been in an Uber. Ubers still freak me out. Also, why does every Uber driver wear all the cologne? Is it part of their contract. Two of the three Uber drivers we've had have worn all the cologne in the world. It's like the Axe Body Spray Wars were fought in the backseat of their cars. It's even better when you consider that my oxygen concentrator is CONCENTRATING that odorous poison and sending it straight up my nose. That's really the best part of Uber as far as I'm concerned.

I'd say that it's different with taxis, but it's not. The taxi driver from the airport also was wearing all the cologne. And the one we had on the way to the hospital also had bathed himself in all the cologne and then apparently opened another bottle and gargled with it. Because why not?

I understand the addictive personality way of thinking ("If one is good, a thousand must be AMAZING!") but I don't see how this applies to cologne, or any scented thing really. It smells like dying brain cells to me.

Okay, ten minutes in and I'm still alive. (Though I'm not sure it's ten minutes. Maybe it's only been nine.)

Of course Dave has final say, but here are some things that should be on record: My friend Grace gets one of my sewing machine. The Janomes are the most user friendly.  My Juki is the best machine I own, but it is not user friendly and it only does a straight stitch. You can't even zig zag stitch on it and forget all those decorative stitches that make life fun. Anyway, Grace can also have any of my art supplies--and can share the rest with the artist whom our cat has recently fallen in love with. After that, they can send the rest to the art space at the same place as Healthcare for the Homeless is.

My mom can have the pick of my quilts, if she wants any. My aunt Char and Kelly and Kevin, too. I don't really have anything else of value and none of them sews so maybe they'd like a quilt or two.  

Dave came in and sat with me while I had a snack and then he got into his pajamas and is now in bed, napping. He's as exhausted by all this as I am, so spare him a thought or ten while you all are sending good and healing vibes my way.

My journals I'd like to have sent to the American Diary Project.  I have years and years of paper and art journals. Maybe they'll be of interest to someone someday. 

It's fifteen minutes and I'm still alive, so there's that.

I do have to go to the bathroom though, so I'll finish this up later. 

 

Discharged

The anger woke me up: I was made so incredibly angry at an argument I was having with a firefighter who had gone off to tell stories about fighting fires while there was an active fire I was helping to fight. He had taken the light I was using so that he could go meet with his buddies to talk about fighting fires, leaving me in the dark, helping to load hoses onto a fire truck with one unsteady old man.

This is the way of the world, I think. 

I just did something stupid:

It's cold in our room (no heat, no reason for it in Miami hotel rooms usually), 64 degrees, so I put on my robe over my thin nighty and I made the mistake of tying the robe belt only to find that it hits just at the incision line. I realized this fact as soon as I sat and the robe belt tightened, pushing against the incision. That did not feel good at all.

The doctor prescribed an antibiotic this morning. Dave will go soon to Walgreens to pick it up. I maybe might possibly be developing an infection and she just wants to be proactive about things, which I appreciate, even if I hate antibiotics almost as much as I hate most all other medications, even ones that I know are helpful to me (because menopause has meant so many bad reactions and emergent allergies to drugs I took with wild abandon back in my youth, things like antibiotics and Pepto Bismol, wild and crazy things like that). 

Just to assure myself and everyone, this antibiotic  prescription is based on a very slight odor to some of the discharge on the bandages--not a foul odor, just a slightly "warm" odor, which I sometimes get in skin folds if I skip a shower for a day or two. The discharge doesn't smell every time I change the bandage, it comes and goes. My temp is normally 97.6, at the low end of normal, and the highest temp I've recorded in the last three days is 98.4--which is also a normal temp during my period or even during hot flashes when my temp sometimes rises by a degree or so. The incision site is not red or more painful than usual (though it's hard to say it's more or less painful when everything still hurts and I keep leaning on the incision site to get in and out of this maddeningly high hotel bed). I don't feel any more rundown or tired than you would expect from someone who had a fairly major surgery six days ago--and I feel considerably better and more energetic than I did day before yesterday.

I'm not overly worried. (But since I worry about everything, it's hard not to worry about this--and everything else, you know?) I'm trying to worry just enough, the correct amount of worry, but gauging that amount of worry is difficult, even though I've been practicing worrying for decades.

I'll tell about other things then:

In the "ask and you shall receive" category: Dave came back from Trader Joe's the other night with a roast beef in a box.  It's not bad tasting, is fairly low in sodium, and is ready to eat as soon as you open the package. It came at the perfect time, as I was getting sick of pre-cooked chicken and need to keep my protein intake up. It's a bit on the medium rare side, but I popped some in the microwave and had it for my snack (one of them) last night.

Here's an easily skipped paragraph that is meant more for my own bookkeeping than anything: Speaking of keeping my protein intake up--sigh--I'm supposed to be between 100g and 150g or so per day and that amount of protein is...difficult for me. One reason is that I don't eat eggs or have the ability any longer to tolerate much dairy (cheese is okay, milk no way). I have soymilk, chicken, protein bars and cheese as my main sources of protein. I have soymilk (16g for two cups) with oatmeal in the morning (and yesterday I started adding a scoop of collagen powder to it (5g) and sunflower butter (4g), so that's 25g for breakfast. I have a protein bar for a snack (20g), making it 45g. I have cheese for lunch (2 slices, 16g), that's 61g. Then some chicken or beef for dinner (roughly 20g for 3 ounces of either), so that's 81g...then I just kind of tap out. Another protein bar is another 20, so that gets me to 100 g for the day and I also try to drink another cup or two of soymilk during the day to get over 100.

These are the boring details of recovering from surgery, the minutes and concerns of my little life in this cold hotel room. 

More to come.