I Will Not Suffer In Silence

Friday, December 31, 2010

I had diarrhea first thing in the morning before any food. Hmmm. No further episodes, and I was able to drink some Boost, so I can rule out the Boost as causing my intestinal issues. I guess my bowels are not completely healed from being bumped during surgery, perhaps that’s why I keep having diarrhea.

That morning, my husband made bacon and I very nearly allowed myself to eat some. But then I remembered that I’ve not had meat in 14 days because my intestinal system is still out of sorts since surgery. I don’t eat pork very often, and it’s the hardest meat to return to after one has been meat-free.
I put it in my head vividly the first time I tried eating pork after being pseudo-vegetarian for 6 years, and man, was that painful. So I successfully resisted the bacon. I say pseudo-vegetarian because I was still eating eggs, dairy and fish. In Michigan, I’d be considered vegan, but in California, I was scoffed at every single time I said I was ovo-lacto-pesco-vegetarian.

Anyway…

Firsts for Day 14:

• I was able to swing my right leg up onto my husband’s lap while we’re both sitting…for 30 seconds before my pelvis started hurting again.
• Without thinking, I had been sitting on the floor in front of the heater fan when I got up and slid onto the bed - on my belly like my husband was - to show him something. As soon as I did it, my eyes popped and I exclaimed, “I DIDN’T DIE!” hehe
  But after about 60 seconds, it was too painful to stay on the belly. Just the fact that I did it though was awesome.

• I was able to drink alcohol for the first time since before surgery, and I did not get violently ill, despite my fear (because of the intestinal issues I’m still having). I drank some champagne and also had some macadamia nut liquor.

Limitations:
Laughing while bent over still hurts a lot. I had gotten up off the couch and was still trying to straighten out my body when my husband said something that made me laugh, and I nearly cried from the shooting pain.

Complications:
Well, not really a complication. The belly button began hurting a lot on Day 14. All day long I had moments of intense navel pain, inside radiating to the outside. Looking back through my diary, it’s consistent to my last post-op recovery. I mentioned it on Day 17. Same thing applies with laying on my side - especially my right side - it’s still too painful to do for very long.

The scabs are raised, sensitive to the touch, and the glue plugs are trying to push their way out. Everything looks good, though. Healing is progressing normally.

I spent the day in a depressed funk. I literally just sat around and watched the hours tick by. I took no exercise that day because of the depression. I can’t remember if I had any ibuprofen that day. The weather was nice, but cold. I remarked that Michigan was roughly 10 degrees warmer than us - a heat wave for January. They had weather in the 50s and we we in the 40s.

Day 14 was New Year’s Eve, and we spent the evening at the same friend’s house where we had celebrated Christmas Day. I consumed rice crackers and spinach dip, fine cheese, and some sweets. There were far fewer people this time, and we watched the movie Aliens and enjoyed each others’ conversation. A very nice, low-key evening. Just what the doctor ordered.

When we left after 1am, the rain had started up again.

Thursday, December 30, 2010

Around 1am, I asked my husband if he’d like to go for a late-night stroll with me, since we were both up. He said yes, and off we went. We walked the same path I’d walked the other day, only this time, I was not on any pain medication. I had taken Ibuprofen only once on December 28, and twice on December 29. It was the wee hours of December 30 when I wrote this.

Along with the half-mile loop, we added a second round-the-block loop, which came out to a whole mile when I looked it up on Google maps. Go me! Last time I walked outside, my lower back hurt quite a lot. This time, it was the knees and buttocks that hurt the most. Even the calves hurt a bit.

I’m going to bed now, but when I wake, my goal for the day will be to climb and down the stairs attached to the front of the split Victorian I live in.

…

I had gone to bed close to 2am and woke up 8 and a half hours later with stinging pain in the abdomen. Urinating didn’t help. I think it is just that I still can’t lay around for that long - my body needs to be moved around. Also, I tried sleeping on my right side that morning and it was too painful to relax all the connective tissue and muscles to successfully fall back to sleep that way.

I drank Boost first thing in the morning and had diarrhea right after. Hmmm.

I had no diarrhea for the rest of the day but had one more instance of loose stool - it was solid but you know what I mean.

Firsts for Day 13:

• I wore underwear for the first time (I’d been wearing the hospital “fishnet” underwear this whole time because even my own undies were too constricting on the incision points).
• I walked up and down the stairs twice!
• I stayed on my feet for much of the day.
• I had a lot of energy all day, only waning once, but I did not require a nap.
• I was able to sneeze at full force without hurting.

I medicated before stair climbing - I took 400mg Ibuprofen. After I was half way up the staircase the second time, the pelvic pain began. Although I have to say the sharpest pain was actually in my knees, because I’d been sitting or laying or reclining for the past 13 days. My knees are usually painful and crunchy, but on Day 13 they hurt more than usual.
Still, I made it back down the stairs and took some more Ibuprofen (400mg).

The rest of the day saw me active as well, even though I had bouts with the pelvic pain and had continued knee pain all day.

The rain had stopped and the sun was out, but it was cold and windy all day. Still, I walked to the corner store and back, and my husband drove me to three more stores that day, looking for something for a gift to my co-workers.

In the evening, my husband stepped out for a band meeting, and I had the place to myself. I turned out all the lights, fired up the faery lights and some candles, and put on my favourite music. I had quite a cheerful time of it, just hanging out online with friends, chatting with my chosen sister, and filing some paperwork.

When my husband got home, we had an interesting text session with a drunken friend in Seattle, which turned into a hilarious speaker phone call. I accused our friend of trying to pop my glue plugs, I was laughing so hard. We totally captured the audio and plan to embarrass him with it when next we see him.

Tuesday, December 28, 2010

Woke up that morning with the intent of going to the social security office, because both of us have name change stuff we’ve been meaning to do. I also wanted to call my doctor and see if I could get an appointment today for liver blood work, because I was still freaked out about the pink hue in my fingernails. I called UCSF and left a message. Then I called the local doctor’s office. They sounded condescending to me on the phone. “What, you think there’s a medication issue going on?” Ummm YES I’ve eaten over 80 Tylenol 3 since being in hospital on December 17, and I had an issue with high liver enzymes before, so YES I think there’s a fracking medication issue going on! I’m afraid of irreversible liver damage thankyouverymuch!

The local doctor had an appointment for me at 4:15pm. I then talked with my husband, who said he thought going to UCSF would be better, since they already have all my most recent blood work and surgery records. When they called back, they had a sooner appointment, so we took that.

It didn’t leave us time to go to the social security office after all, but I told my husband we could do that tomorrow, and that his priority is to me and making sure that I am well before dealing with any of his stuff. Yeah, he was still in the dog house.

The bumps in the road during the car ride did not bother me immediately and intensely the way they had when I was driven home from the hospital and like when we went out a few days ago. Rather, the torture was delayed. Half way to UCSF, I experienced stinging sharp pain under the diaphragm. The pain went away once we were out of the car and settled at the doctor’s appointment. The pain returned on the ride home, and returned again when we drove to a friend’s house that evening.

My exercise for the day came in the form of walking to the car, walking from the parking garage to the hospital and back, and walking back to the house.

I’d like to also note that while we were at the UCSF Women’s Center, I also walked across the street to the main hospital, where I delivered a Thank You card to Nurse Hannah. She wasn’t there, and the wing I had stayed in (4 East) was shut down and being painted, so I delivered the card to the other side of the wing (ICU).

Firsts for Day 11:

• Able to put on and tie my own shoes (have been wearing slip-ons til today)
• Able to wear a bra for part of the day
• Able to wear tights for part of the day
• Able to jump (we have ants entering at the top of the door frame. I was spraying the outside of the door frame with Bugs-R-Done spray, but wasn’t quite reaching the top. Before I knew what I was doing, I had jumped to spray. When I landed back on my feet, my eyes were wide, and I stood there in shock for a second. Then I thought, “Holy crap! I didn’t die!”

I was so excited by jumping that I jumped again. I giggled. And then I had to take a nap, because that had seriously worn me out!
I napped for about an hour.

Because of my fear of liver damage, I took no medication that morning or afternoon - not until I had gotten the blood work done. I gave three vials of blood that day; one for liver, one for kidney and one for blood count.

When I woke up from my nap, my husband informed me that it was time to head over to a friend’s house. She was going to take us to dinner in exchange for my husband watching her cats this coming weekend. We had Thai that night.

The weather had been rainy all day (winter in California), and worsened by evening to a drenching downpour. This made my life a little more miserable because of how slow I am in getting into and out of cars during recovery.

I had diarrhea as soon as we got to our friend’s house, and twice more as soon as I got home.

Nausea and stomach pain followed, lasting through bedtime. This was the second time since surgery that I had intestinal issues after eating Thai.
That night, I had fitful sleep. I was hot and cold all night - sometimes drip-sweating. This was about the third night in a row where I went to bed freezing and woke up sweating to death.

Monday, December 27, 2010

My husband was in the dog house as he recovered from a severe hangover and a morning of puking his guts out, amongst other bad behaviour. I was severe in my verbal punishment, telling him he failed me as a caregiver, that I needed him to remain level-headed like he promised me he would be, because I’ve been scarred before by caregivers letting me down (my boyfriend promised my parents he would take care of me after a near-death head-on auto accident back in 1994, and then he left me alone for days while he hung out with friends. I had to crawl to the kitchen to get food, with a massive head injury and whiplash. I will never forgive him and in fact I sued him as an uninsured driver in that accident). So anyway, I’m scarred physically and emotionally, and it took many years to build up trust. I boasted to my parents how well my husband had been caring for me to this point. And then this. Oh my gods I was so mad.

On to brighter things though - on Day 10 post-op, I noticed that I was able to lay on my back, my right side, and my left side with effort and controlled breathing to settle. Although the right side is the hardest to lay on. I discovered through having to clean up my husband’s messes that I was able to sit on my knees. I was able to more easily swing my legs off the couch or the bed. I was able to more easily climb into bed.
All of this is only one day later than my last recovery, wherein I could lay on my sides by Day 9.

I have to keep reminding myself that this time is different. I had surgery a week before my period, not after. I have four incisions this time, not three. They bumped into the thin tissue outside of my bowel, bruising it badly, upon entering my body with the equipment.

The headache that started at 8pm the previous night still with me at 2pm the next day. It finally went away by 4pm. This, despite lowering the dose of Tylenol 3.

All day, I experienced cramps, and the bleeding had ramped up again. This was Day 10 of post-op and Day 5 of my menstrual cycle. I was still passing a lot of big clots. I cried from the pain and had to take a whole Tylenol 3 around noon. I held the heating pad to my pelvis for the first time since surgery, the pain was so bad. It felt like white hot burning in the center of the uterus, alternating on the ovaries.

Because I am determined to keep the body moving as doctors instructed, I went for a walk around the block. The weather had cleared again, and I wanted to take advantage. This is a half-mile round trip walk, and I did it! I walked at a shuffle in a Tylenol 3 induced haze, but I did it!

Because I was still constipated, I took two doses of miralax that day, and finally had a bowel movement at 10:24pm. It was a mix of solid and liquid.

I forgot to mention that around Day 4 or Day 5, I had noticed that my fingernail tips were turning pink hue. My fingernail tips have for years been so white that it looks like I have a French manicure, so when I looked down at my nails one day and saw that they matched my skin tone, it freaked me out.
I finally remembered to google it, right before bed…and found this page, which says, “White fingernails with pink near the tops are a sign of cirrhosis of the liver.”

This freaked me out further and nearly led to a panic attack. I went to bed uneasy that night.

Saturday, December 25, 2010

I slept in til 9:30am! For breakfast, my husband and I enjoyed our traditional Christmas Day fixings - smoked salmon and cream cheese on brown rice tortilla bites. We used to eat this on baguette but in 2006 I found out I have gluten intolerance. Since that time, I use rice crackers or rice tortilla as my bread. My husband has been very accommodating, and instead of getting baguette just for himself, he eats his favourite crackers alongside me. :)

Christmas Day marked the second time I drank some coffee. In fact, it was my leftover mocha from two days prior. I opened presents with my husband, called my family, showered and got dressed in clothes other than pajamas. We then spent 8 hours at a friend’s house for a Christmas Day gathering. I was amazed that I was able to stay out that long. I was still taking one Tylenol 3 every three hours for the pain that day, and I had to change my pad twice while we were there. I was still shuffling when I walked. It rained the entire day.

I enjoyed the company of friends and their children (so many of our friends have toddlers and infants, now, it’s weird). For food, I consumed naughty things all day: 3 chocolate covered Queen Anne cherries that my Ma had sent us for Christmas (it’s an annual tradition dating to my childhood that Ma had Queen Anne cherries in the house on Christmas Day). I also consumed 2 glasses of cold carbonated cranberry juice, at least ten bites of different cheeses, four bites of different fudge, several small macaroons, a chocolate truffle, about 3/4 cup worth of homemade gluten-free scalloped potatoes, about half a cup of fancy steamed root vegetables, and Smart Water™ to drink throughout the day. I went through three 20oz bottles of the water.

Dante

Parents, friends, children

A Christmas Story on repeat :)

Jean-Anne, Rebecca, Gwen

Daniela, controlling Badger via remote ;)

The appetizer table

Katie's grandpa reading to her and a friend

Alexander, being a good little host

Me in my Tylenol 3 haze, enjoying being with friends

Thursday, December 23, 2010

I had my third emotional breakdown in 24 hours, when the surgeon’s office called to say the assistant surgeon left my disability paperwork in my patient records at the hospital. I never heard my phone ring so by the time I called back just after noon, the surgeon’s office was closed for the holiday weekend.

I called the main line at my surgeon’s office, and I also called the nurse who had left me a message, and I left messages but never heard back.

I called the hospital and they said I have to fill out and snail mail a form to release my information, and that they’d have it to me in 10-15 days.

For some reason, I had it in my head that the disability paperwork was due no later than 11 days after becoming disabled, so that’s when I had a full on nuclear meltdown and sobbed for what felt like an hour.

On Day 5 post-op, I sobbed because my husband was in a bad mood over his upcoming birthday (he gets into this funk every year, and every year I forget that he gets into this funk). He is also in mourning over the loss of his job two days before my surgery, so he’s depressed as hell. I’m super empathic to begin with, and I needed him to be my everything for support right now, so I broke down as well.

Earlier that morning on Day 5, I cried while watching my own endometriosis video about my surgery. I just sat there and sobbed, because I actually went through with the surgery that I didn’t want to go through until next June. As a result of doing the surgery now, there were complications as I had feared, so I was full of “I should have…”

In brighter news, I took my first unassisted shower on Day 5, but I had to nap afterward. I was a good girl and took the Tylenol 3 before the shower. After the shower, I was a brave girl and went for a car ride with my husband (he drove my car this time, at my request). The bumpy roads were easier - I did not cry - but they were still hell at times on my innards. We went to my workplace so I could pick up some cards left for me, then we went to Mariposa Bakery for some gluten-free goodies and an almond milk mocha, and then we went to Whole Foods to get some vitamin D3.
I’d been having a hell of a time finding D3 again, and that day, my friend said he’d located some at Whole Foods with no soy ingredients. Every other place near my home has the D3 with soy, now. While at Whole Foods, we also found a cotton flannel unbleached cloth specifically for castor oil packs that my naturopath recommended, and we found vitamin A with the ingredient my naturopath requested. So that turned out to be fruitful shopping.

While we were out, the bleeding ramped up to the point where it now looked like my usual period. This alarmed me at first, but then I realised that had I not had surgery, my period would have been due this day, anyway. I called the hospital and left a message inquiring about it.

We got home and the gas company was there waiting for us - I had called two days prior about a droning noise which had been going on since August or September. PG&E said they’d be out sometime on Thursday, and that we didn’t need to be home. However, once they were at our home, they found that the earthquake alarm on the gas meters was hooked up incorrectly or something, and in order to do any work on the meters, they had to shut off gas to all the apartments in the house. PG&E called me to tell me they’d be at our house til 6pm, and if they missed us, to just call them back out to hook up the gas again. We got home at a quarter to six, and saw two trucks and a gaggle of PG&E guys were on our block, hanging out. The moment we entered the door and turned our light on, we heard a guy call out, “Hey! They’re home!”
The head dude came right over to us and told us that noise was in fact found on three of the six meters, and that on one of the meters, it was so loud that it reminded him of a car with exhaust issues! So they fixed all that. They came in and lit the pilot lights to our gas stove and wall furnace, and that was that. :)

Day 5, Thursday night, my husband bought us Thai food. I ate seafood curry for dinner. mmmm, foooooood.

I had a bowel movement after dinner, but was still constipated. By that point, I was using butt cream. I took some more Miralax after dinner and had to go again. I took 2 calcium/magnesium pills and a vitamin D3 right before hitting the bathroom. I was still constipated. :(
The bowel movement was very thick, long and paste-like, just the same as it was on Day 4 post-op. After all the pain and pushing, I sat for a moment and had to go again. This time it was much softer. I was glad I took a Tylenol 3 and 400mg ibuprofen for the pain, but I wished I’d taken it sooner than right before I had to go.

Total bowel movements that evening was 4, and as a result I had muscle spams on the left side from pushing so hard. :(

Weather-wise, the rain had subsided for us a bit on Day 6, which lent toward our being able to go out of the house for a bit without me being afraid of slipping on wet pavement.

Wednesday, December 22, 2010

I was still running a 99.9°F fever. I was still experiencing moderate low back pain. I still had bladder pain. My urine output was very good, but the hesitancy had returned.

Day 5 was the first time I had a ten hour lapse in medication dosage. My last dose had been 1 Tylenol 3 at 1:30am, and I didn’t take any more pills until 11:30am because I was officially tired of all the Tylenol 3. This did not serve me well, however, and by 11:30am I was near tears with the pain. By 12pm I was sobbing due to being overly emotional in general and being in pain combined.

My husband had been in a foul mood since the previous night because it’s his annual depression time (every year around the time of Christmas/his birthday he gets depressed), and because the layoff is hitting him hard emotionally. This in turn affected my emotional state and I broke down sobbing and cursing his employer, and urging my husband to just pretend to have uplifted spirits right now because I must lean on him so heavily during my surgery recovery.

That afternoon, I went for a walk and hung out outside with a friend for about an hour in 55°F degree weather, which felt warmer than it has in days due to some humidity and dark cloud cover.

The scent of midwest spring was in the air. It was nice. However, the cramps ramped back up in that hour, and I had to go back inside because my bladder was screaming at me. I went to the bathroom and discovered I was bleeding dark red with debris and clots.

My headaches, which I had forgotten to detail in earlier posts, returned.
Suddenly, I was light-headed and starving. I hadn’t eaten anything but jello and 3 small gluten-free pancakes and some broth a few hours before my little trip outside, so I made some gluten-free mac ‘n cheese and drank some coconut water and some electrolyte water. I took 400mg ibuprofen - Day 5 post-op was the first time I took Ibuprofen since a week before surgery.

On Day 5 post-op, I noticed that there were things I could do by day 2 post-op without causing debilitating pain:

• yawn
• shift weight while standing
• shower

I also noticed that there were things I could do by day 3 post-op without causing debilitating pain:

• lightly blow my nose
• gently stretch to stand at my full height

Things I could do by day 5 post-op without causing debilitating pain was cry, and I seemed to do a lot of crying that day.

Lastly, I noticed that there were things that were the same as my last post-op experience:

• moderate to heavy fatigue
• still on mushy foods / liquids diet
• still an effort to get up, walk, sit or lay down
• still can’t cough, laugh, sneeze, suddenly lean forward while sitting, sit up from laying position, plop down, roll over on my side, nearly drop something and impulsively try to catch it, burp, hiccup, walk any faster than a shuffle
• headaches and eye pain

Despite the good healing progress, it still felt like a step back - Day 5 felt more like Day 3 again for me. The bleeding, debris and cramps had me concerned, but at the same time, I was told to keep moving and being active after surgery. I didn’t feel like I’d ruptured anything, so this must be normal. But ouch…

Monday, December 20, 2010

By the third day post op, I was able to stay awake for 3-5 hours at a time, and I had to nap for 1 to 1.5 hours at a time.

Around quarter to nine in the morning, I took my temperature. I had been feeling feverish since Sunday night, so I took my temperature and it was 100°F. Hence, taking the temp again in the morning. The glass thermometer read 100.2F, the temporal therm read 99.3F, and the digital oral therm read 99.3F. I thought glass was the most reliable, though. I asked friends’ advice, which really didn’t come back definitive. So I called and left a message with my surgeon’s office. I never did hear back that day.

Around 9:30am, I had diarrhea. Finally, some movement after all evening yesterday suffering with gas that would not exit. The bowel movement happened right after I had a tablespoon of Miralax with my cream of rice and mango cereal.

I took my first shower that afternoon. Note to self, have a meal and tylenol 3 *before* the shower.

Even though I had a shower seat (graciously given to me by my psychologist, who suffers from Crohns Disease) and I had help stepping into and out of the shower, the cramps and mid-back pain still ramped up after my shower. I was so happy to have had a shower, though! No regrets! I was excited to finally change my clothes. I got to wear the new footie pajamas with the drop drawer in back. Turns out the drop drawer doesn’t go as low as I needed, or else my body is all the wrong proportions for those jammies. But it worked out - it did the trick.

Freshly showered and footie pajamas!

I tempted fate and had a baked brown rice tortilla topped with goat cheese and mushrooms for lunch! These are what I call my pizzas.

I tempted fate again and had Saag Paneer with some rice and a mango lassi for dinner!

It felt soooo good emotionally to have solid food.

However, after eating each meal, the pain under the diaphragm returned, because of the stomach being too full yet for my innards to cope well.
I bitched about it on facebook:
“The residual carbon dioxide in my body is REALLY pissing me off. I hurt a lot. :( Walking as much as I can to relieve the pressure build-up.: - December 20 at 3:36pm  
“Although what is hilarious is that my cat Kiki is following closely behind me wherever I walk in the house. Cutest thing ever!” - December 20 at 3:42pm

Monday was Winter Solstice, so I lit lanterns in all of our windows. It was still raining all day for days.

Solstice lantern - kitchen

Solstice lantern - computer room

That night, we watched the lunar eclipse from our front door! How exciting to know that this was the first total lunar eclipse on Winter Solstice in 372 years! We watched the first half of the eclipse before my body gave out - I experienced debilitating neck pain from looking up (damned bulging discs), and bad pelvic pain from all the standing in the cold misty rain. The next morning, I watched this cool time-lapse video to see the rest of the eclipse.

On Day 3 post-op, I went through 7 Tylenol 3 pills. I had started trying to take one every three to five hours instead of two pills, but it didn’t really work out. Each pill was staggered by half an hour, though, which is a start.

I had started having crazy dreams and nightmares from the Tylenol 3 as of Day 2 post-op. I kept meaning to write down the dreams…alas, I forgot.

Sunday, December 19, 2010

When I had surgery three years ago, I counted the same day of surgery as ‘Day 1′ post-op.

This time I’m counting the first 24 hours post-op as Day 1, so that means Day 1 post op began Saturday, December 18 at 10am.

I was finally released from the hospital by 2pm on Saturday the 18th, and we got me loaded into the car by 2:45pm. We got home by about 4pm because my husband drove slow where he could to try to spare me the bumps in the road, and because traffic was really bad. Once on the freeway across the Bay Bridge, it wasn’t so bad. But San Francisco and Oakland city streets are a different story. I was crying.

From December 18 to December 20, I took two Tylenol 3 every 3 hours religiously for the pain, so I was constantly loopy.

I noticed by Sunday (Day 2 post-op) that I could already yawn. I couldn’t even do this very well on Day 5 three years ago. All that “10 deep breaths every hour” stuff in the hospital really paid off this time!

I am walking earlier than last time - though I was made to shuffle to and from the bathroom in the recovery room after surgery last time, I was not ordered to walk the length of the corridor and back again before my release, and I certainly wasn’t motivated to do any walking once I got home.

I had two moments of Note to Self over the weekend: first, if you are allergic to everything like I am, always bring some of your own food with you to the hospital in case you are kept longer than you planned for.
Second, always bring your own medication with you to the hospital, and ask for your own type of meds as soon as possible after surgery, if you know in advance that the morphine derivatives that they put you on won’t work. UCSF seems to prefer Dilaudid initially, then Vicodin for pain managment, but those medications leave me with nasty side effects. The first night after surgery, I was already requesting my usual Tylenol 3. When they discharged me Saturday afternoon, they forgot to give me my last dose of Tylenol 3, despite my asking for it a few times. The day staff on 4 East leaves something to be desired.

As of Day 2 post-op, I realised there’s another important thing to remember: count your pills! Record every pill you take so you don’t overdose or short-shrift yourself!

It was on Day 2 that I got confused as to how many pills I’d taken, and so I did a manual count. Thankfully, my memory of the last 24 hours was good.

Pill counting

Another thing that occurred to me on Day 2 post-op was to remember to count how many hours I am awake and asleep. For the first couple of days, I was up for 1 to 2 hours, and asleep for 1 to 3 hours all day/night.

December 19, 2010, 4:20pm - great news! My bowels work! ;)
It was the thing I was fearing most, just like last time - to have a first bowel movement after surgery. I did not force this one, and it was not solid like last time. I ate solid foods and the wrong kinds of foods too soon after surgery last time. This time, I took Miralax one day after surgery, and was able to have a bowel movement two days after surgery - that’s two days sooner than I did last time!

A note about the weather: it’s hard to go walking outside of the house when it’s pouring down rain. It’s been raining since Thursday, December 16.

A note about my diet: I’m eating cream of rice cereal with mango mixed in. I’m drinking lots of smart water and lots of Trader Joe’s free-range chicken broth. I’m eating jello, almond-milk pudding, and Amy’s brand gluten-free, dairy-free freezer mac ‘n cheese. No meat other than the chicken broth.

A note about what I’m wearing - a nightgown! First time since childhood I’ve worn a nightgown. I wish I would have purchased several of these.

A nightgown is your best friend right after laparoscopy.

Day 1 post-op

I had blood drawn at 4am and again at 7am Saturday morning. I didn’t really obtain deep sleep all night, so it wasn’t too bad to be woken up by the nurses. I think I got up for the day before 8am.

Before 9am, my surgeon Dr. Giudice came in to see me. She told me that overnight, my blood count had dropped, and she was concerned. She told me that before surgery, my blood count was 34, and right after surgery, it was still 34, but at the 4am blood draw, my blood count had dropped to 27.

I asked her what that meant. She said that if my blood count gets to 20, they’ll have to open me back up again, because it means internal bleeding.

My heart dropped. Panic began to set in, but I didn’t want to start screaming like Ren & Stimpy in Space Madness. Meanwhile, my surgeon was talking about blood transfusions if I stay in the 20s with the blood count. She suggested that I start asking friends who would be willing blood donors, rather than going to the blood bank.

I emphatically told my surgeon with a smile that my next blood test would be 33. She said that her realistic expectations were 27-29. I told her it’ll work out, you’ll see.

At this point I cannot recall if she showed me all the photos of my surgery on Saturday, or if it had been Friday night. In any case, I’ll detail it, now. My surgeon told me that I am currently stage I or stage II endometriosis, because it was centered on the ovaries and uterus alone. She could not find the 1cm endometriosis implant on the bladder reflection, and said that sometimes, implants disappear like that. WHOA. CRAZY.
She also found no endometriosis on the bowels or the rectum or the vagina, THANK THE GODS.

The left ovary was adhered to the side of my uterus this time, and all the adhesions were cut away and they freed the ovary up again. Endometriosis was burned off the exterior of the uterus and the pelvic sidewall. I think the left ovary is the one that has an endometrioma dead center in it, so they could not get to it without destroying the ovary. I am assured it will not cause pain.
The right ovary had two endometriosis surface lesions, which were burned off of it.

Dr. Giudice took a shitload of photos of my surgery - before and after shots - and they were not blurry like the one single ‘after’ shot I got from my last surgery.

When my surgeon left, I drew a deep breath, suppressed a scream, and then called my husband, who had gone home to try to sleep in a real bed.
I tried to sound as calm as I could, but as the words spilled out about the low blood count, my voice got higher with panic. This news of course made my husband panic. He panics by getting silent on the other end of the line. He then said solemnly that he’d be there as soon as possible. I apologised and said I just need him physically close, is all, and not to worry, that it will work out, but that in the moment, I needed him real bad.

I then posted to facebook, asking if anyone out there is O+
Nobody was who saw that post go by that day. My husband is O+ but the surgeon refused him as a candidate outright, in case we want to have children some day. It messes with the antibodies or something. Feh. We don’t want kids. Feh.

I realised after I’d called my husband that the rental car he was to try to score that day would no longer be happening, and that I’d be doomed to ride home in his moldy compact car. More feh. I was not in a good mood, but I was determined. I had a little talk with my body and ordered it to straighten up. Then I got up and went for a shuffle down the corridor, and I did my breathing exercises I was prescribed to increase lung capacity again and keep the blood flowing well (10 slow deep breaths in through the mouth, then out through the nose every hour).

I can’t remember when I finally noticed it, but the night before, my husband had put some goals on the white board for me…

Goals for the day...

At some point, I got my I.V. removed, because I was peeing up to 10oz at a time, and having to pee every half hour to hour. This helped elevate my mood a bit, because I felt more free range at this point, rather than tethered.

My husband arrived shortly before my next blood draw. My left arm was now looking pretty scary from all the times I’d been stuck over the past 26 hours.

My poor bruised arm

My husband leaned over to hug me and I clutched onto his arm and just held on for a minute.

The rest of the day was a waiting game - I had to wait for delayed breakfast. I had to wait for the nurses to come in when I called them and they were always late or didn’t show at all, which meant my meds were constantly late. I had to wait for the results of the 9am blood draw. Then I had to wait for my urine ‘hat’ to be emptied and realised by this time, nobody was bothering to record my urine output, anyway. I was putting it on the whiteboard in case anyone cared, but the damned hat was full. When someone did come to empty it, I immediately filled it with 10oz again and nobody ever came to check on it again. The daytime nurses really are not in my fan club. The daytime nurses are fragranced, at that. There was one nighttime nurse who was perfumed, but she was not my nurse. I passed her in the hallway and nearly choked to death. She asked me if I was okay. I told her I’m chemically sensitive and that health care professionals aren’t supposed to be scented, anyway. I asked another nurse for a face mask and was happy to receive one with a charcoal filter in it. The scented nurse made rude comments as she walked away. I pfft in her general direction.

So anyway, yeah, the daytime nurses were also scented, but not nearly as bad as the one nighttime nurse was. Thankfully she wasn’t my nurse that night. My nurse was Hannah, and she was the best nurse I had the entire stay in that hospital. I’m in her fan club for sure. She did everything with a pleasant air about her and unconditionally, and really listened and was attentive to her patients. Even when I mentioned as nicely as I could that the guy next door was keeping me awake by his incessant pounding of the call button and his constant adjusting of his bed, nurse Hannah nodded and told me in a non-judgemental tone that the poor man is really ill. She’s a doll. I told her so myself. I’m going to send her a thank you card.

When the blood count finally came back around 10am, I was thrilled that it was 30. I asked if I could go home, and Dr. Wang said I could! Another doctor on the surgery team came in a short while later - the only male doctor on the team - and he told me too that I could go home. He asked if anyone had ever told me I am anemic. I told him no, and that I’d tried to get blood work to prove it, but it always came back “in the normal range.” He told me that my ‘normal’ before and right after surgery, being 34, is anemic. I thanked him for this information, and told him I’d suspected it for years. I told him I have gentle iron tabs at home to take, and he was pleased by this.
Both doctors felt that my surgeon was being a bit too overprotective to keep me longer with the blood count the way it was, but I told them I trusted her word and didn’t want complications to arise later. So they called her up, exchanged the info, and she okayed my discharge with a blood count of 30.

I gently high-fived my husband twice and grinned ear to ear. WOOHOO! I’m being discharged!!

But the waiting was not over, yet. I had to wait nearly FOUR HOURS from the time I was told I’d be discharged, to the time I was actually given a wheelchair ride to freedom. In that time frame, every last one of the people in the rooms adjacent to me, including the guy who was “really ill”, had been discharged! It was a ghost town in that ward!

Waiting to be discharged

My I.V. port was finally taken out, and I was finally given the discharge paperwork around 2pm, but the nurse on duty did not have the prescription pain meds. She had to phone the surgeon and get it called in to our local pharmacy. In that time, she set the discharge paperwork on top of water the food tray lady had spilled, and then she began writing info on a piece of paper on top of the discharge paperwork, which are carbon copies. So of course whatever she was scribbling went through the copies. Stellar. And she was scented - so I had to put my face mask back on.

I was really glad to be out of there when the wheelchair guy arrived. I forgot to take my breathing contraption. Ah well. I put on my festive fez and off we went!

My husband went to get the car and the male nurse waited with me in the lobby. I was wearing my fez, and the nurse was fascinated by it. I let him hold the fez and examine it, and told him the website where he can get one of his own. :)

Me in my zombie monkey fez, ready to go home!

My husband opened the passenger door and I could immediately smell the mold in his car. YUCK!! I braced myself so as not to cry at this indignity, and allowed the male nurse to help me into the car. It was still raining outside, as it had been since the day before. The rain and wind had been fierce overnight. I was given the giant pillow chair to hold onto for the ride home - my pillow chair which had sat in my husband’s car all night, and now smelled like his moldy car. Ugh.

The ride home was just as excruciating as last time. It’s a compact car on bumpy roads. I cursed Mercury Retrograde all the way home for not granting us the ability to have scored a luxury rental car for a smooth ride. I cried, literally cried, on the way home. I took off the fez before the tears spilled, because there’s nothing more sad than a sobbing person wearing a fez.

We got home and I shuffled to the door. My husband was so exhausted that he did not get the wheelchair out of the car that we’d packed for this moment. He walked me to the door and let me in, and then he went and parked his car.

I’m pretty sure I went right to bed. It was excruciating to have to climb into a bed that didn’t have a motor to lower the bed for me. We had to prop up blankets and pillows to get the right incline for me, which also supported my head well enough. And of course once I was settled, I had to pee, so I had to get out of bed again, which hurt like hell. I think I cried a lot that day (Saturday).

Pillowpalooza.

I averaged being awake for an hour to an hour and a half at a time, and then sleeping for an hour to three hours in between.

I ate chicken broth and jello and drank smart water all night, and continued to take two Tylenol 3 every 3 hours all night.

My husband tried to get some more housework done Saturday night; dishes and laundry I think. He was already mentally and physically exhausted, but he kept trudging along. I kept telling him to stop and take a break, but he wanted the stuff done. But I swear, it broke him. He was near tears himself, the poor man. I could tell that the work layoff had begun to take its toll on his mental state.

It’s just the last thing we needed when I needed him so desperately to be at beck and call throughout the surgery and the weekend. So to the company that laid him off, I say a big EFF YOU. I say it again. EFF. YOU.